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"Normal" for Down Syndrome- please join me
Posted by: arianasmom ()
Date: January 14, 2009 11:29AM

I've been thinking alot lately about how on this board and other similar settings, there's always discussion about a child being 'normal' for having DS, or being 'different' than other kids with DS. Recently, a dear friend pointed out that maybe some people felt that way because the trend is that when our kids do great things, we brag about them- rightfully so. But, when our kids don't do the same things as others, or do things much later than others, we keep quiet and don't post. Therefore, 'normal' may look a bit scewed for those reading the board that don't have much exposure to other kids with DS. So, I thought I would post about Nana now, and hope you will do the same, no matter what your child may be doing.

Nana is 5. She can walk, and walk fast, but does not yet run or jump. She can feed herself with her hands, as long as she is only handed a few bites at a time, or else she will likely stuff anything that's on her plate into her mouth. She likes lots of different foods and can drink from a straw.

She can recognize most letters and is learning to count to 10, but she still rarely follows direct commands. She knows some colors, and will spontaneously say a color that she sees, but will not answer the question "What color is this?" She loves books and loves to be read to. She holds onto dear objects like the plastic basket in my sig photo, for hours, days, weeks.

She loves to smile and laugh with people she knows, but is wary of new settings and people, especially if there is noise and commotion. She will repeat little games if she gets a good response (ie laughing, smiling, praise from us). She loves to be held and hugged by people she trusts, but won't hug a stranger.

She has been tested for autism and apraxia, and tests negative. Her health is good and she takes no medicine (except Miralax, lol).

That's MY child with DS- how 'bout yours?

Chris

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Re: "Normal" for Down Syndrome- please join me
Posted by: TammyandParker ()
Date: January 14, 2009 12:11PM

I'm Tammy, Mom to Parker.

Parker is 4. He was born 6 weeks early with a tethered spinal cord, Imperforate anus, chronic lung disease, and pulmonary hypertension. He is trached and has a g-tube.

The first three years of his life was pretty much spent in the hospital.

He is pretty much non-verbal due to the trach. He does sign, but perfers to point to what he wants. sigh.

He can't figure out why anyone would want to actually eat real food when I g-tube gets the job done so well. double sigh.

He is just now standing up on his own and beginning to take a tentative first step.

He loves, loves, loves other children. He is picky about the adults he hangs out with, lol.

He loves to be read to. He 'reads' to himself. Will point to objects on command. Knows his own mind and exactly what he wants. Is determined to do things on his own first.

He plays games. He loves to play anything that involves a ball. We are working with him to develop his skills in playing make believe. Wooden kitchen from Santa this year.

He sorts, builds with blocks, LOVES playing cars and puzzles, can idenify a given object out of a set, and is learning his colors. He prefers red, btw.

Doesn't watch much t.v. LOVES playing outside. He's a man with a mission.

He can identify animals by selection and sign. He can't say the sounds they make, but he can identify them by sound.

He demands songs and finger plays, and will do the actions with you.

He's very suspicious of any and all ride on toys, lol.

Due to the IA it will be awhile before he is potty trained. But he will train.

He's an original. Normal is in the eye of the beholder.........totally relative to your unique kid, Ds or 'typical.'

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Re: "Normal" for Down Syndrome- please join me
Posted by: lorent035 ()
Date: April 24, 2017 06:36AM

TammyandParker Wrote:
-------------------------------------------------------
> I'm Tammy, Mom to Parker.
>
> Parker is 4. He assurance chat was born 6 weeks early with a
> tethered spinal cord, Imperforate anus, chronic
> lung disease, and pulmonary hypertension. He is
> trached and has a g-tube.
>
> The first three years of his life was pretty much
> spent in the hospital.

Hello!
This is my first post her please be indulgent with me because i realy love to read the post in the forum.
Thanks!

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Re: "Normal" for Down Syndrome- please join me
Date: January 14, 2009 12:53PM

Love you, Chris, for initiating this! Clap

Michelle here - momma to Elliot (our entirely "normal" child with T21) and others...

Elliot is 29 months old

He was born at 32-weeks gestation and received his diagnosis a week after birth

Elliot has dealt with significant endocrine issues, having antibodies for two competing autoimmune thyroid disorders at birth - transient issues

His tethered spinal cord was detected in early 2008 and corrected in March 2008

He has a Dandy walker variant and venous hypertension

Elliot is extremely gross motor delayed and has very strong food aversions...oh, and he has 8 teeth coming in currently

Elliot eats only Pediasure - Vanilla Pediasure - nothing else (but he will eat…momma will make sure)

Medically, other things, but I'll move on to the fun stuff…

Elliot loves Signing Time

Elliot adores his siblings

Elliot is "trying" to speak - so far we have "ma ma," "daaa," "hi" in a very guttural tone and "eeety" (kitty)

Elliot is being evaluated for autism - and "evaluated" is the operative word in my mind – we have yet to see the guru

Elliot is more social than any of his siblings, with an attention span that cannot be matched in our family...and eye contact that is picture perfect (which I love as I could gaze into his baby blues forever...and a day)

Elliot loves it when I vacuum and tries to catch me as I scurry through the house with the thing

Elliot smiles at the drop of a hat and loves to play patty cake

His latest game is to crawl as fast as he can while I "try" to catch him

Elliot loves interaction and especially enjoys himself when his eldest sibling plays ball with him (as in roll it back and forth until "she" is tired)

Elliot loves the wind on his face, and kisses on his face also

Elliot enjoys having his head scratched and lotion applied on his arms, legs and tummy – he’s very ticklish

He enjoys dancing with momma, brother, dad and sissy and is enthralled with music, and musical instruments of any kind

Elliot favorite "person" (besides me) is Elmo

There's my “archetypal” baby boy - Wee E in a nutshell

xo


Michelle, Momma to Elliot (8.8.06 T21), Nora (2.12.02) & Isaac (9.7.07)
[elliotsexpeditions.blogspot.com]

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Re: "Normal" for Down Syndrome- please join me
Posted by: MommytoMadison ()
Date: January 14, 2009 01:19PM

I mostly lurk here, but I thought this was an interesting thread - so here goes.

I'm Penny, mom to Madison who turned 7 last October.

Madison was born 2 weeks and 1 day early via C-section and with an AV Canal Heart defect. She had OHS when she was two months old.

She never really crawled, but she started walking when she was 22 months. She started running when she was 22 months, 1 day. She can climb on anything that will stand still. The higher the better.

She likes swimming, and would probably stay in the water all day if she could.

She loves jumping on the trampoline and doing somersaults.

She plays T-ball, she does gymnastics and is pretty good at both.

She helps her daddy and her papaw feed the cattle. She loves to ride the 4 wheeler with them and help to feed.

She has a battery operated 4 wheeler that she goes all over the place on. She does a great job steering, putting in reverse, forward, etc.

She loves to dress up, have her fingernails and toenails painted - she can be so girly girly, but is also a tomboy.

She is a whiz on the computer as far as getting to websites that I have set up a shortcut to for her.

She is day potty trained and can go to the bathroom by herself. We are still working on night training.

She loves most people and will willingly give hugs to people I let her give hugs to. We are working on stranger danger with her now. She is very social and probably knows more people in town than I do - and they know her.

She loves to help me cook in the kitchen.

She can get her own snacks and drinks out of the cabinet/refrigerator.

She can write her name, if you write it down first so she can copy it. She can also draw a circle, square and almost has the triangle down. She has also started drawing mommy and daddy lately. Do I really look like that! LOL

She can say a handful of words, but is more or less considered non verbal. She does alot of sign and pointing to what she wants.

She can't say her abc's or 123's. Part is because she can't say them and the other part is because she does not know them. She does know some, but not near all of them.


She can't hold a conversation with you because she isn't talking. She said her first sentence Monday night. "You mean" and even "Mama, you mean" after I made her pick up the toys in her room.Shocked! She is saying a few words, but mostly only her dad, myself or immediate family can understand her.

She can't dress herself yet, except to pull her underwear up and down. She can't button buttons. tie a shoelace or zip a zipper, but is a whiz at taking off her clothes.

Regardless of what she can or can't do, I'm proud of each milestone she has reached because I know how hard she had to work to reach that milestone. Even if she is still reaching milestones as an adult, I don't think I could be any prouder of her than I am today. As long as she does her best in her endeavors and is happy, I'm happy.



Edited 4 time(s). Last edit at 01/15/2009 12:28PM by MommytoMadison.

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Re: "Normal" for Down Syndrome- please join me
Posted by: Emmesmom ()
Date: January 14, 2009 02:05PM

really good topic!

Emme is 2 1/2 yrs
Treated for Infantile Spasms at 7 months, OHS at 10 months, has had Tonsils, adnoids and tubes (thank GOD)
no meds, no time in NICU at birth, full term and huge!

She is starting to try to take some steps but mostly crawls and cruises furniture.

Loves people, very huggy and has a knack for zeroing in on emotions.

Says mama, dada, ball, gg, cakey (her aunt), baby, night nght, puppy, fish, drink, and various other words..not all can be recognized by others though.

Loves Signing time and signs pretty good, will do the first consonant of the object with her signs.

will request you to sing certain songs with her and will do the actions with you, Itsy bitsy spider, etc.

LOVES her siblings and plays ery well with them, except when she takes things from brother or wacks him..hehe..pretty normal stuff there!

does not dress self but will assist me in dressing her.

Knows parts of face/body.

feeds self, uses spoon and fork...not pretty but functional. drinks from straw cup and thankfully no food aversions.

great kid!!!!

Vicki, mom to Mackenzie 5yr, Emme 2yr T21, Austin 1yr

Photobucket

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Renee
Posted by: Georgianna ()
Date: January 14, 2009 02:14PM

Let's see, Renee is now 8 years and 9 months old. She has dealt with a lot of medical issues in her life that I think have definately affected her gross motor skills.

She sat unassisted at 1.5 yrs old. She crawled at 2.5 yrs, and walked unassisted at 3.5 yrs. She still has trouble with some skills, like walking up and down stairs with one foot per step, she still puts 2 feet on each step. She had gotten a bit better with this but recently has lost some strength and won't do it anymore unless absolutely made to. She is starting to learn how to ride a 2 wheel bike with training wheels.

She was tube fed until she was 4.5 yrs but quickly transitioned to table foods at that time and fed herself. She was potty trained at 5 yrs old.

She talks constantly but not everyone can understand what she is saying and often she isn't talking with really constructive conversation. She likes to say phrases over and over that at one time got a reaction out of someone. But she rarely has trouble getting her point across when she wants something.

She is reading at probably a 1st grade level. She knows a lot of sight words and can phonetically read when reminded to sound a word out. Her reading skills are better than her comprehension though. She can read a story and sometimes not get what it is about. But she is improving on that and is starting to take reading tests at school on books she has read a number of times.

She LOVES math. She can count to above 100. She does touch math for addition and is pretty good at that. She is working on subtraction and 2 digit addition with regrouping.

She hasn't done many sports, largely because of her health but she does swim in the summer and is doing pretty well with that. She can "dive" in (kind of a belly flop) and swim probably 20 yards without anyone touching her but she needs someone in front of her encouraging her to keep going. She doesn't swim freestyle but she does put her face in the water, swim a while then come up for a breath then put her face back in and swim some more.

She loves to play video games with her brother. Her favorites are Mario Sluggers, Mario Kart Wii, Go Diego Go.

She mostly prefers the company of adults but she is just recently starting to prefer to play with the kids at school.

Thanks for starting this thread, I think it is great to see what a range "normal" can be and how varied kids' skills can be.

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Mr. Mikey
Posted by: mom2mikey ()
Date: January 16, 2009 08:05AM

What a great thread!

Mikey just turned 10. He is a little character and likes to tease and joke around but is by no means the "social butterfly" that is is painted by the stereotyping brush of children with Down syndrome.

Mikey reached many of his early gross motor milestones quickly - he crawled at 9 months, walked at 16 months, hopped on 2 feet around 2 years old, walked up and down stairs with alternating legs by about 3...etc. Yet, he has never mastered riding a bicycle and still needs waterwings when he is swimming as he can't quite keep himself up.

Spoken language has always been Mikey's biggest delay. He started signing words shortly before his first birthday and at one point knew and used hundreds of signs. He made very few noises in the first years and was not driven towards spoken language at all. It is only in the past couple of years that he has started saying much of anything. He still speaks in single words and most of his words are very concrete. Its coming... but its coming at his own pace. Through the years we have used signing and PECs to facilitate communication. He does very well with both of these systems.

Academically Mikey does well with his sight word reading program but struggles with phonetic concepts. He reads books with several words on a page very well as long as they are words tha the he has in his sight language vocabulary (which is well in to the hundreds of words). He can count to 10 but has trouble with adding and subtracting unless he has manipulatives to work with. When given a number of objects up to 10, he doesn't actually count them - he looks at them and tells you how many there are (quirky kid). He can find the right type of money like nobody's business - if he needs a 20 dollar bill from the wallet or a quarter, he gets it out without issue. He struggles with printing and although he can make his letters and numbers, he still has a long way to go in this area. For spelling words, we use little tiles that he gathers and puts in the right order when given a word to account for the fine moter skill issues.

Life skill wise, he can dress himself (although often doesn't want to), can assist with making his meals, can clean up his room...etc. Toilet training has been an ongoing battle and we still have many BM accidents. We are currrently looking to weather this is diet related as his BMs continue to be very running (too much information I know).

On the behaviour/routine front, we have come to discover that he needs a lot of assistance. Things must be done in a certain order or long-drawn out meltdowns (which can turn in to aggression to self or others) may occur. We have a routine at school where he works for a certain amount of time and then gets part of his 'sensory diet'. He has been diagnosed with sensory integration many years ago and we have looked in to Autism. Ultimately, although he displays behaviours consistent with children on the spectrum, his language and social skill delays are not "off" enough in comparison to his developmental age to say he is on the spectrum. His school has proceeded with putting in the interventions as if he is on the spectrum as these seem to be strategies that work for him. Mikey will shut down in new situations - simple close up and pack it in.

Socially, he has struggled as other kids have wanted to mother/direct/take care of him through the years and he is not at all responsive to this. This left him on his own for many years. He is a solitary little boy by nature so this was not something that upset him. In the past year or so, he has started having more "real friendships" where he just plays with kids. Most of these kids are a few years younger than him but size wise they are the same. And really... I have very few friends that are the exact same age as me either.

Mikey has many many many "stim behaviours" - he is constantly fidgeting, shaking his hands, making stim noises, shaking his head...etc. There are very few moments in a day when he is still or quiet. When he gets absorbed in something he is doing, these will decrease but they are never far from the action winking smiley.

Mikey attends a school that has both a Learning Assistance and Behaviour program. Although he is not officially part of the Behaviour program, the Behaviour specialist in the program has offered a lot of suggestions throughout the year. These have been wonderful and have made a world of difference for him. Mikey spends about half his day in the learning assistance program where he does his math, language arts and life skills. This is while the grade 3/4 class that he is a part of is doing math, language arts, social and science. Mikey then joins the 3/4 group for lunch, recess, all other classes and all class activities (field trips, skating, assemblies...etc.). This is how the school does the learning assistance program for all students. It is a perfect fit for Mikey as he was all too aware of the fact that he was working on different academic work when he was integrated and this frustrated him. Now when he is with the 3/4 class, he is doing basically the same stuff (although his final product may be a bit sloppier - lol) and doesn't stand out. This works for him and has resulted in him buidling some nice little friendships with those kids.

I have always said that Mikey is writing his own developmental book. Everyone who comes in contact with him quickly says how bright he is but I also know that he is not bright in the traditional sense of the word. I believe that he will always live in at least semi-supported situations. I cannot yet imagine a time when I will be able to leave him alone. The activities that he is currently involved in (Beavers and Gymnastics) are done with a community support 1 on 1 worker for him. He always has a support person with him at school (although they have been able to move away from him more and more over the last couple of years). He has a long ways to go but he has also come a long ways in the past little while.

Most importantly, he is happy most of the time. He loves his life and brings true joy to those around him. He is constantly making progress (although it can seem at times that things are not moving forward). He gets up each morning excited that he has another day in front of him. His most used expression is "Wow! Woook! Wook! Mom-mom Wook!" because there always seems to be something fascinating in his world. As a parent, I have had nights where I've cried myself to sleep wondreing if I had it in me to fight another day for his rights and I have had to lock myself in my room while I deal with my frustration as he has broken or messed up yet one more thing. I have had my heart stop as he got his hand loose in a parking lot while we were walking and he went running across the parking lot without any safety regard for the cars driving through the parking lot. But always... a kiss and a hug when he goes to bed and then the excitement the next morning when its a new day. I wouldn't change a single hair on his head!

Monica (mom to 9 year old Mikey and in the process of adopting number 2)

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Re: "Normal" for Down Syndrome- please join me
Posted by: luvmypeanut ()
Date: January 14, 2009 02:23PM

Hi I'm Rhonda, mom to Alex who will be 9 in two weeks!

Alex was born full term at 10lbs 3 oz (so much for our babies being teeny tiny huh?) and spent 15 days in the NICU.

Had ear tubes at 6 months of age

Hospitalized twice in his first year for pneumonia

VSD repair one week before his first birthday.

Started walking at 16 months, broke his leg two months later and had to learn walking all over again!

First teeth came in at 17 months.

At one time we had 10 specialists on his case, seeing 4 of them regularly

He went to the Feeding clinic for about 6 months.

He got glasses at 9 months of age

He has a primary immune deficiency

He has ADHD

He knows most of the nurses in the CARES unit at Children and they love him.

he is pretty much non verbal but is improving. Two years ago a speech therapist said he would probably never talk, but he is doing it now - new words all the time! He knows lots of sign and can gesture with the best of them.

He was potty trained at age 7. He can say poop or pee and go by himself (just don't leave him alone in there!!!)

He has broken both legs (at different times)

He has had 14 surgeries.

He is the most social guy around. He loves kids and his teachers and his grandparents and brother and sister. He loves animals and cartoons! He's never met a stranger and loves attention especially from the girls (just like his dad)

Went on his Make A Wish trip in May 2007 to Disneyworld. He absolutely adored it and Give Kids the World!

He knows his alphabet and numbers up to 20, knows money (not counting but by sight) is learning to tell time and reading and addition. He loves to know how things work and if you show him, he usually has it down pat. If he asks for 5 pieces of candy and you give him 4, you will hear about it.

He can pretty much dress himself, although this morning shoes were on the wrong feet and he was pretty mad at me for changing them! Sometimes the underwear goes on backwards too... but who cares?

He loves the Wii and Guitar Hero and the Wii Fit

Loves chocolate and can ask for that by name! He also loves milk, cookies, noodles and ice cream cones, all which he can ask for! And don't you dare drive past a McDonalds without stopping for French fries!

Belching and farting on comman are hysterical. Typical boy!

Loves his bike, playing ball, swimming, and remote cars.

His behavior of late has been terrible. Working with a behavioral doc on this and he is on medication for ADHD.

He has sensory issues and loud places and way too much stimulation will put him over the edge. He hates haircuts and dentist with a passion!

he does weekly transfusions of SQ IG.

I know I left out alot....other than we love him like crazy! I just had to edit after reading the others and I thought of more things! LOL

Rhonda and Alex, 9 yrs.

[luvmypeanut.blogspot.com]

Ice Cream Cone



Edited 1 time(s). Last edit at 01/15/2009 07:04AM by luvmypeanut.

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Re: "Normal" for Down Syndrome- please join me
Posted by: maysonsmama ()
Date: January 14, 2009 02:23PM

Wow.. this is a AWESOME thread ..thanks Chris!!

Miss Mayson is going to be 3 on Feb 15th.. wow three... cant believe it!

She was born at 37 weeks and was diagnosed with Ds right after she was born..

She was a very healthy baby. Rolled over at 4 months, sat on her own at 7 months. She never crawled.. only scooted on her bottom. Finally walked a few months ago! That has taken much longer. She is a very cautious child. She is starting to get over her cautious stage as she is climbing up on our kitchen chairs now and walking a lot more.

Has always been a great eater and drinker. Still has a bottle at night but other than that she drinks from her sippy cup or straw cup. She doesn't seem to have any texture issues and eats or at least tries most things. She self feeds herself but usually ends up throwing her spoon and using her hands... some day she will use it!

Mayson was very slow at getting teeth. First tooth did not come in until she was 21 months. She now has about 15 teeth.


Mayson doesnt sign alot. She has about 10 signs. Thats partially my fault but she always mimics many words and sounds and uses them instead. She has about 30 plus words.

Mayson is learning to match her colors. If asked "what color is this" she does not know but we are matching the right colors together.

She can count to three and recognizes that letters are letters. She does not know a "t" is a T etc but she will point to a letter on my sweatshirt and say"e" even though its not a E. (hope that made sense)

She is starting to learn animals and what sounds they make. she gets them mixed up except for pig and duck.. she knows those by heart.

Mayson is really into imaginary play now. She loves to play with her little doll house and her babies. She also will sit through a whole movie. The kid cannot get enough of Elmo or Dora. Elmo is the love of her life right now.

In the next few month Mayson will have eye surgery to correct her Esotropia in both eyes. She wears glasses and has worn them since she was 10 months old.

Amazingly enough, Mayson has peed and pooped on the potty for me. I am training her yet because she has just learned the sign for potty and I dont think she really gets the whole concept. She does get that she has gone in the potty though and gets excited. She goes almost every time I sit her on it. Now, to figure out the next step so she processes it.

Mayson has a long way to go, but she is getting there. she is sooo tiny.. barely 21 lbs and 31 inches long.. tiny for almost 3. but she amazes me everyday at what she achieves. I wish I could achieve as much as she does in a day. All your kids are amazing to me no matter what they can and cannot do. I love hearing about their achievements and what they can and cannot do. They are my inspirations!!!
Hugs!! amy

*edited to add that Mayson doesnt have issues with loud noises, large crowds, etc. I see that lot in our kids. She has been to wrestling meets, sports events, etc, since she was born and I think its just natural to her!

Amy, mama to Jayden, Rylee, and Mayson (DS)




Edited 2 time(s). Last edit at 01/14/2009 02:32PM by maysonsmama.

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Re: "Normal" for Brig
Date: January 14, 2009 02:50PM

Karen, Mom of Brig here. Brig is 18 years old. He was born at 37 weeks gestation, and he rolled over at 6 weeks. I was convinced he was a genius and would not have the delays most kids with Down syndrome experience. Haha!

Brig walked at age three, which almost made me insane since he had a brother who was younger than he was, who walked first! He potty trained fully at age 7. Brig does not ride a bike, and he probably never will. He has significant hip/lower torso instability. His gait is awkward, especially when he runs. Which is why he so prefers swimming! He is actually very athletic in the water and consistently wins gold medals in swimming in Special Olympics!

Brig's huge strength is his people skills/personality. He has never met a stranger. He loves people and is always looking for a common denominator to talk about. He deceives people, actually. They assume that he is cognitively capable of much more than he actually is because of his social skills. Intellectually, he can read through a newspaper article and pick out enough words to make sense of it...if he is interested in the topic. Meaning, he reads the Sports section. Typical male. His math skills are not so great, and he still can't tell a quarter from a nickel. He doesn't care, though, as long as the Coke machine spits out a drink! (He definitely prefers to put a dollar bill in, though, so he doesn't have to worry with the change.) Brig will listen to conversations for something he gets, and then he jumps in with all kinds of info. This can be annoying to some of us at times, I might add. But for the most part, we are really thankful that he can carry on a conversation so well.

Brig has been extremely healthy since birth. His one issue was reflux, and finally at age 5, he had surgery to correct it (Nissen fundoplication). He has a chronically goopy nose during the school year, but allergy testing did not show anything. We manage it with Claritin which helps a bit, but it never completely goes away until summer break. Brig has also been blessed with a fantastic metabolism. He stays in good shape, and I think the swimming really helps with that. Goodness knows, he consumes enough Coke that he should be enormous! And you know, as he ages, he may put on weight like his (ahem) parents.

I worried for years about some of Brig's fine motor skills. I figured that once he was out of elementary school, he probably wouldn't advance much more. I was very wrong on that one! He learned to tie his shoes and button his pants just last year at age 17! He was probably 14-15 before he could start a zipper on a coat. He has learned cursive over the last couple of years as well. I'm adding this in case any of you are ever told your child won't continue to learn stuff after a certain age, or that they no longer need OT. They DO continue to gain skills, even through high-school, so keeping up those therapies is important!

*Editing, like Mayson's mom, to add a blurb about loud noises. They used to FREAK. BRIG. OUT. He would scream, cover his ears, and act terrified. Basketball games, concerts, fireworks, even music at church could do it. Somehow he has outgrown that sensitivity. I don't know if he has learned not to fear it, if the pleasure of a sports event or concert is worth the pain to his ears, or if he has damaged his hearing with his silly iPod or what, but I guess he was in middle school when that sensitivity just kind of went away.

That's all I can think of for now. It's fun to get a real snapshot of everyone's kids!



Edited 1 time(s). Last edit at 01/14/2009 02:53PM by Karen (Brig's mom).

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Re: "Normal" for Down Syndrome- please join me
Posted by: karitristansmom ()
Date: January 14, 2009 04:28PM

I love this smiling smiley
Tristan is going to be 5 on January 30th. I was induced at 36 weeks because I was really sick. I was told when Tristan was 1 hour old that they suspected he had DS. 10 days later they confirmed it with the blood test but I already knew. On that day I came here and found the T21 community.

Tristan was the most peaceful baby out of all 3 of my kiddos

He slept the best. I used to set my alarm every 2 hours to wake myself to feed him and had to for 4 years because he digests so slow he needed to be fed small amounts and often. So I happily didn't sleep for 4 years. He is worth it!

Tristan had alot of problems breathing and swallowing and had pneumonia alot as an Infant and we had alot of sleep overs at the hospital the first few years.

Tristan sat unassisted at 9 months'

He never crawled but rolled quite well

He pulled to stand by his first Birthday

He was walking by 16 months and running and jumping before he was 2 BUT he rarely ever walks where I'd like him to go. Lately If I hold his hand he is learning to walk nicely beside me Finally!

Tristan had his T&A removed and pallette shaven at 4 and has been a really different child since. Way healthier!! He can breath and swallow without aspirating.

His speech is really coming alot. He will repeat after me now which is new before he would always say NO! Now he at least tries and is doing really well.

Tristan knows how to pedal a tricycle but doesn't like to. It is hard work and he will only do it for a few minutes then says all done and tries to run off.

Tristan knows over 200 signs and can identify with what they all are BUT he will NEVER come up to me to ask for something. He is like Spiderman and gets into the top cupboards himself to sneak cookies etc...

Tristan does puzzles better than either of my other 2 kiddos did at this age BUT he flat out refuses to color or draw. This has me concerned because how will he learn to write.

Tristan can say his ABC's quite well and count to 11

He is really good at stringing beads and loves looking at his books and even will point things out and say what they are.

Signing Time and Dora&Diego are his Favorite things to watch on TV

Tristan has sensory Issues especially to loud noises. Through different things we have done and life experience he has come a long way. Wanted to take him to Sesame Street on Ice but Just know he won't have fun too noisy.
Tristan loves fruit, veggies, meat, cookies and frozen yogourt tubes BUT I cannot get him to eat much else. Despises grains any cereal bread, rice etc.. oops except cheddar flavored rice cakes. He doesn't have Celiac he had the biopsy

We are working on using the potty without much success. He will go first thing in the morning and that's it. Other than that He flat out will not and tells me No and will get mad if I continue with it. I have backed off because I don't want him develop an Aversion to the Potty. He starts kindergarten in the fall. I was told there is a chance (depending on the aide) the school will call me if he has a BM and I will have to come and change him.

My favorite thing about Tristan is no matter what he always has a smile for me. Even in the worst situations. He woke up from surgery in tons of pain but as soon as he saw my face he grinned from ear to ear and melted my heart for the millionth time in his short life.

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Re: "Normal" for Down Syndrome- please join me
Posted by: maxsamemsmom ()
Date: January 14, 2009 04:54PM

Max is 4. He was born at 36 weeks and burst into the world after 2 1/2 hours labor. He also rolled over very early so I was convinced he was a genius too. It just so happened that he arched his back so much, it flopped him over.

His gross motor skills are probably his strength, well and also his charming personality. He loves everyone. He's extremely social. He can charm the most cynical and bitter people. He started taking steps at 17 months and was a true walker by the time he was 19months. (About the time Sam was born.) He started jumping at 24 months. I think he's a gifted jumper. Of course now, he's excellent at escaping the house and running away. And I mean running.... He's fast.

He loves chaos. The more activity the better but I notice he is developing a sensitivity to sound. The tornado siren freaks him out and he barely tolerates the train that we go see unless I cover his ears. But for the most part, he thrives in crazy, energized, environments.

He's very healthy. He had eye surgery for strabismus and tubes put in at 10 months. We've since had 2 other eye surgeries and 2 more sets of tubes. He's also had some croup episodes, one which landed him in ER. He's also been to ER for a busted lip (stitches), a swallowed metal ball, and a possible broken nose. Hey he has no bridge so he was good! I think most of that is due to boyness not an extra chromosome.

Max's biggest delay is speech and impulse control. He is finally having a burst of language but mostly repeats what we say. He also talks to himself frequently but I don't know what he's saying. He used sign for a long time but has recently dropped it as he has discovered speech. His imaginary play is excellent and he understands most of what we say. He follows direction unless he figures there is nothing in it for him. LOL!

With the burst of language we also get..."Don't like it"...a lot. NO! in an annoying, growling, voice (and mostly in public). I get a lot of "STOP IT! GO AWAY!"...also in public. He also likes to show his displeasure by physically striking out at me. He likes to pinch, hard, and hit. I'm not sure how to deal with this yet.

Max can take off ALL his clothes and put on some. He is not potty trained and I see no end in sight.

Max can use a fork and spoon and drink from an open cup BUT, he prefers to be fed and likes to dump out his cup. GRRRR.

Max loves to swim and is a thrill-seeker. He loves jumping off the diving board.

Max loves animals and is very gentle with our pets unless he's chasing them.

Max has been a good eater though somewhat exclusive in his likes. He finally will eat hotdogs and try other meats. The other day he ate some salad and I thought I was going to faint.

Max loves the treat of sleeping in Mommy's bed and when he gets to will softly rub my arm and say "Mommy....Mommy's bed".

Max will also repeat "Lub U".

I don't know if he's "normal". I just know he is Max and I love him to death and my only hope is that the world loves him also and have high expectations of him.

Cris,Emma(9),Max(5),and Sam(3)

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Re: "Normal" for Down Syndrome- please join me
Posted by: lucasmom ()
Date: January 14, 2009 05:08PM

Great topic Chris!


Lucas is 25m olds
Born with Complete AV Canal Defect which was repaired when he was 10 weeks old.
He is not walking, but army crawls. He is just know pulling to his knees.
He is being fitted for fmos per PT request.
He is on one heart med and one allergy med
Drinks from a transitional Think Baby sipper cup but will only hold it on his own with assistance
Will feed himself with a spoon if you ask him as you hold the spoon in front of him but he is good with feeding himslef with his hands.
Has texture issues and will only eat food that is Stage III food consistancy, but we are working on the chewing thing and he is slowly getting it and enjoys the new flavors of food
Has stranger anxiety and has had it ever since he was 10m old
Lucas is teething and has 10 teeth to date.
He hates brushing his teeth and screams to no end, I have to swaddle him in order to do a complete teeth cleaning, oh happy times smiling smiley
Lucas loves to throw things, whih drives me insane but we are working on his impulse conrol.

On to the good stuff...
Lucas loves his brother and sister and hugs and kisses them every chance he gets.
He pretends to "talk" on the phone
Plays patty cake and peek-a-boo
Dances
Points to 6 body parts when asked
Uses 4 signs, and has about 20 real words
Calls "Maaa" for his brother Mark and "Ba" for his sister Ava
Loves Elmo and points to the tv and says "o eese" for "elmo please"
Intiates songs like Old Mcdonald, Itsy bitsy spider, and twinkle twinkle with words and finger play
Says bottle as soon as he gets up and around his bedtime
Points to objects in books
Intiates animal sounds
Loves his bath, as soon as he hears the water running he says "bath" and pretends to wash himself
Loves the park and says "weeee" and laughs to his hearts content when swinging on the swing
Lucas is one of the most loveable little boys and loves to be around other children



Edited 2 time(s). Last edit at 01/14/2009 06:39PM by lucasmom.

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Re: "Normal" for Down Syndrome- please join me
Posted by: thegreathoudini ()
Date: January 14, 2009 05:56PM

Caleb was 9 yrs old.

He was born 37 weeks, and was in the NICU for 1 week, coming home with oxygen. He had a PDA which closed on its own by the time he was 7 and some other heart thing that closed by the time he was a year (I can't remember the name of it).

He has had a T&A and ear tubes since he was 14 mos (although he doesn't have any in right now.) He had occipital-axial instability and had his neck fused when he was 3 1/2 yrs old. When he was 7, he was in a sledding accident and hit a tree face first, then 9 mos later he was in car accident. Thank goodness for the fusion!!! He also had his tear ducts probed when he was 3ish. Other than having bouts of constipation which we take care of with flax seed, Caleb has been comparatively healthy.smiling smiley Caleb was toilet trained just a few months ago, and still wears pull-ups at night and sometimes he does doing the day too. It wasn't until we got the constipation taken care of that he was able to toilet train.

Caleb is moderately deaf,has auditory proccessing disorder, wears glasses, has severe verbal apraxia, and a TBI (from the sledding accident).

Communication: Caleb's receptive is about 2-3 yrs. Verbally, he says very few words. Caleb's main form of communication is ASL but he doesn't do sentences. He jabbers when he is telling us something and he acts out things out with some ASL thrown in.smiling smiley He says "Baba" for "Mama" and when ever my 2 yr old hears him, she starts saying "Baba" also!

Motor skills: Caleb walked at 19 mos. He has been very strong in gross motor skills. He climbs like a monkey. He learned to pedal a trike when he was six, but does not like scooters or bikes, even with training wheels. When he was about 2 yrs he became deathly afraid of water, even bathtubs and showers. He is fine with bathing now (after 3 yrs of him screaming at bathtime) and last summer that he semi-enjoyed swimming lessons and didn't scream like a howler monkey if you took him past his waist depth wise. He gets really upset if his brothers pass him when riding bikes or running. But he loves to play t-ball (he likes the catcher position and tells the other players that how to swing the bat and hit the ball) and soccer. He loves to watch sports on tv, any sports including something as boring as golf to football etc. (I don't know where he gets that, neither my dh or I are sports fans.)

Academic: Caleb is homeschooled. He is doing first grade math, slowly but surely and is learning to to add up to 5. He can count to 20 (in ASL) and is working on more, less, between, before, and after with the numbers. Reading we are working on all the sounds of the alphabet and learning to write in cursive (we don't do print at home).

Caleb is also an escape artist. I don't know how many times he has gotten out of the house.

Caleb loves teenage and 20ish age women. He'll go sit by them and "talk" to them about anything. When we lose him at church, he is usually with the teenage girls. He also loves the grandpas. One of his few words is "gapa".

Caleb loves animals of all kinds and has to stop and pet all dogs that we see. He loves to go to the zoo. He loves to color, play games on the computer, nintendo, etc.

He loves to listen to us read, and is starting to really get into legos.

Caleb can dress himself, and is getting better at buttons, but still has a hard time with snaps, zippers, and laces.

Caleb also does not like loud noises, but we take care of that by not wearing hearing aids at loud places.

And for those who are LDS and are wondering, Caleb has not been baptized. He goes to the 7 yr old class with his younger brother. And for cubs scouts we are just starting Tiger cubs this month.

kaylene

Kaylene and DH; Kirsten-11 yr, Caleb-10 yr (DS),Nathan-7 yr, Jacob-5 yr, Metta-3 yr

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Re: "Normal" for Down Syndrome- please join me
Posted by: sharrae ()
Date: January 14, 2009 09:26PM

Well, you've convinced me! A chance to talk about one of my favorite topics?? (Ava being the other!)

Marco was born 2 1/2 weeks early which made his Mommy pleased as punch! As soon as they handed me the little bugger I knew he had DS. The ped. confirmed it later that night. He was tiny, weighed in at 5'13", 19 1/2 inches. He is STILL tiny weighing in at only 31 pounds at the age of 4 1/2. He is still wearing 2T clothes although I refused to return the 3T clothes I bought because I wrongly assumed he must fit in them by now - we just roll them up!

Marco had a mouth full of teeth by the time he was 11 months old. Sat up unassisted by about 9 1/2 months old. He commando crawled at about 17-18 months old. At his 2 year cardiac appointment we were told that we had been misinformed and that actually the heart defect he had would absolutely need surgery. So in preparation he had a T&A done in September of 2006. They would not perform the OHS until this was done as he had moderately severe obstructive sleep apnea and would not risk intubation. So at the age of 2 1/2, December 11, 2006 (while Mommy was 22 weeks pregnant) he had surgery to repair his ASD. Surgery went beautifully but he unfortunately contracted a MRSA infection which eventually resulted in them reopening his surgical site and letting him heal from the inside out. Yes, you are right, cleaning the gaping wound in his chest was not real easy on his preggers Momma! He was FINALLY cleared on February, 15 2007 - one day after Mommy's birthday. Couldn't have asked for a better present!

So after that his main mode of transportation became the absolutely adorbale butt scoot. He mastered it and could get to places before I could!! I sometimes miss seeing him do that! At last, just shy of 3 1/2 he began to walk- what a day that was!! It took him another solid 7 months before he would find the strength to stand up independent of a stationary support! We are still working on the steps, but as with most things, Marco has a fear of the unknown, and is approaching it with apprehension.

Marco knows all the letters of the alphabet and approximates sounds for most. B, C, D, E, G, P, T and V, all sound the same:-) He knows his numbers one to ten and approximates those as well but recently has been saying eight as clear as you and I.

Which brings us to his speech development. Marco was recently diagnosed with Apraxia of Speech. Although I have seen consistent and steady progress, it is slow. Most of the words he says, he has signed for some time. The biggest thing I have noticed of late is that he is following directions MUCH better and is coming to me to ask for help when he needs it! (Guess he doesn't have autism afterall as one local expert suggested once - all based on the fact that he didn't bring toys to me!) He has been 'talking' more consistently to himself and there are certain words that he uses consistently and functionally. He is beginning to repeat words - but not on a consistent basis. His speech development is very sporadic and inconsistent. It will melt my heart the first time he calls me Mommy!!

He is 95% potty trained. The 5% remaining being the fact that he doesn't necessarily tell us that he has to go. We put him on the pot at about 3 hour intervals. If you ask him if he has to go he will say no or walk to the bathroom. However, since he recently developed an obsession with the toilet he will say yes even if he doesn't necessarily have to go and squeeze like heck to get a few drops out because he knows he can't flush if he doesn't go:-)

Feeds himself with a fork, drinks from an open cup and straw but I still give him a sippy cup at home because he likes to do that throwing thing! LOVES meat, eggs, cheese, raisin bread, pretzels, yougurt, applesauce, french fries and more. Will tolerate peas and corn but refuses any other fruit or vegetable. Oh wait - I lied, he eats all frut and vegetables at school for his one on one, but not for me - little sh*t! Only recently started like sweets and will TEAR UP a piece of cake or a bowl of ice cream. Give him a new food and he will smell it, lick it and likely double pump and throw it!

He loves watching select videos (one of his words) and is very hard to break into new ones. Same with new books. I always say it is like breaking in a wild horse, one minute at a time. Absolutely loves any toy with music or alphabet related. Has started to like art activities more. He can write his first name with verbal prompt of strokes and some hand guidance. He can take his coat off and hang it on the hook - again at school, not for Mommy. Can pull his pants up and down for tolieting with some assist - again at school, not for Mommy. Anyone noticing a trend here?

Loves his sister Ava, most of the time! Has an odd way of showing affection, he gouges your eyes. Loves to play with eyelashes and when he is exicted and having tons of fun wrestling, look out because that enthusisam comes through in a BITE!!

Gosh...I guess I should stop, but I did warn each of you, one of my favorite topics. Who knew I would find my hero in such a pint-sized body???? Thanks for starting this great thread Chris!!!

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Awww, shoot, you know I'd be in!
Posted by: Chelseasmommyt21 ()
Date: January 14, 2009 10:59PM

I love reading all of the posts, how fun!

Chelsea is THREE (and 5 days!)

She was born full term and diagnosed shortly after birth. She had a small ASD which has been cleared. Ear tubes at 12 months, she bit her tongue with her razor teeth at 12 months also which hit an artery and she had to be sedated and her tongue was stitched up! Other than that she was the healthiest kid on the block! Until ...

At 20 months she was diagnosed with leukemia. 8 months of treatment, 157 days in the hospital and she hasn't looked back. Super snotty girl since, but never really turns into anything more. Right now we're fighting sleep apnea, breathing issues at night, sleeping sitting straight up.

She rolled at 3 weeks (I noticed an early trend w/ rolling!), sat at 6-8 months, walked at 18 months (but digressed in walking when she got cancer). RAN right after treatments ended, 2 1/2 ... She can kick a ball and stand on one foot for 1-2 seconds. She's not jumping, and only alternates feet on steps when prompted. Sometimes she can do one step outside w/out holding on to anything, but it's rare. She can't peddle a bike yet.

She scribbles, but won't draw a circle. She's beginning to: draw horizontal/vertical lines, identify colors, button and zip, count, but still needs a lot of work. She can match colors and shapes and is an expert at the peg/picture puzzles (the more difficult ones prove extremely challenging, but she'll give it her all if she puts her mind to it).

She poops in the potty a lot, and often will tell us when she needs to poop. Potty, another story, but she did pee for me yesterday and then a little at school today, so maybe we're on to something. She has MASTERED undressing and can basically dress herself ... shirt, pants, socks, shoes ... although sometimes it's backwards or inside out, but her dad does that too, so oh well!

Speech, well, ahem. She's been diagnosed by hospital slp and EI slp with apraxia. She's a classic case even though she's young. She's got 168 signs (I just counted last weekend for her teachers!) She has ten words, but to be honest I'm not sure you would understand them, we do though! Still waiting on that "MOM" I'll take "bob" for now. Drinks from open cup/straw/sippy (when we're lazy).

She loves music, dancing, imaginary play (w/ babies) and signing time. NO stranger danger, and that's a little scary. She's a climber and escape artist. She's manipulative and does whatever her brother does. She can definitely hold her own. NOT AT ALL worried about loud noises. She's usually the loud one. You can hear her yelling, "HEY" a block away. She has to notify EVERYONE everytime something happens (someone enters a room, a new song is on TV, big brother is drinking milk ... WHATEVER ...) SHE yells, "HEY" and taps you until you acknowledge what she's pointing out to you. Funny, but a little annoying sometimes.

Wow, did I just write a book?! And I could go on ....

Carey, mom to Chelsea, 3, and Logan, 5
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Logan

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Love this thread Chris!
Posted by: Anonymous User ()
Date: January 15, 2009 08:13AM

I'm Vicki, mom to Aaron who is 9.5 years old. I have been in lurk mode here since we made the switch to this board.

Aaron was born at 37 weeks by csection and came home 2 days later. We were relieved to find that he did not have any medical issues to deal with.

My favorite baby milestone was when he sat himself up in his crib for the first time at 11 months. He crawled a little, but not much and walked at 17 months.

When he was almost 3 his PT told us he would never jump...2 months later he was jumping and he pretty much hasn't stopped since then Bliss

Aaron is a running, jumping, climbing little monkey. He will go go go and then crash. He doesn't have a lot of endurance, but does have lots of quick energy.

Aaron is not a self-motivated boy. He needs lots of prompting and praise. He would rather someone else do something for him so it is easier. He is passive and laid back and I fear he will get picked on as he gets older and not take up for himself.

He potty trained at 4 and was staying dry at night by about 6.5.

He struggles with fine motor skills like buttons, zippers, snaps, etc. He is finally getting his shirt buttoned, but it takes him about 30 minutes to button his shirt on Sunday mornings. We have been working dilligently on tying his shoes for about 6 months with little success, but he can get the first part now.

Aaron loves to ride his bike and can ride without training wheels. He loves to swim, especially under water, but still swallows a bunch when he swims.

Aaron LOVES people. He never meets a stranger and we litterallly cannont go out in town without someone knowing him. He has always been popular at school, and has had the same best freind for about 3 years. Aaron is a good friend...lots and lots of fun. I think his very social personality has really helped his speech/language, which has been a strength for him from early on.

He's also a great big brother and loves his brother and little sis. He still loves to give hugs and snuggle on the couch, which makes my heart melt!

Aaron does well in school. He reads on an early 2nd grade level, regroups double digits with addition and subtraction. He has trouble recognizing nouns in sentences, but can tell you that a noun is a person place or thing. He is working on money in school right now and it is difficult. He is far behind his regular ed classmates, but continues to make his own progress, and we are really proud of him for that.

Aaron loves sports. He loves watching sports and playing them. He is currenly playing basketball and has played soccer for several years.He is in his second year of a gymnastics tumbling class. He is learning to do back walkovers. He did a front handspring for me not too long ago after his favorite team scored on TV. He has lots of upperbody strength, but when he does the flips he will usually fall backward after he lands because he has weak legs. He also loves to do workouts with his dad and surprisingly can do 3 pull-ups. (this makes dad REALLY proud) His other favorite pasttime is playing gamecube. THe sports games are his favorite of course.

He's also in his 3rd year of scouts and our hope is that he will one day make Eagle.

My favorite thing about Aaron is that every time he walks into a room, it lights up. He is a burst of sunshine and fun.



Edited 1 time(s). Last edit at 01/15/2009 12:02PM by aaronsmomvic.

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Re: "Normal" for Down Syndrome- please join me
Posted by: Anonymous User ()
Date: January 15, 2009 08:59AM

This is FABULOUS! I love this thread!!!

Abby is 3. She is a little sister to AJ and will be a big sister in a few months.

She rolled over at 3ish months. Don't remember when she sat unassisted, never crawled on all 4s, and walked right around age 2. She does not run (although she's getting faster at walking when she's trying to catch her brother). She does not jump. She can't pedal a trike, but she can move a ride on toy with her feet.

She was born 9 days early. We found out at 2 hours old that she had tracheo-esophageal fistula with esophageal atresia. Which meant that at 7 hours old she went in for surgery. That was repaired, and then she ended up with significant breathing issues and went on a lung bypass machine (ECMO for those familiar) a few days later. She was in the NICU for for 6 weeks. Due to her issues, she has asthma and reflux.

Her reflux took up most of her first 7 months until we got her on Prevacid. Made a world of difference. She had been on an ng tube for those first months, and once we made the switch to Prevacid, she started taking a bottle, and by 10 months no longer needed the tube. Feeding has always been a huge struggle for us. We determined when she was 2.5 that she has a milk protein and soy protein allergy, and once we eliminated those from her diet, she started to eat "real" foods, and was able to come off of formula. She still has a pretty limited diet (won't eat anything wet, no fruits, etc). She has eggs for breakfast every day. She LOVES Oreos. Greg says that you haven't seen real joy until you've seen Abby have an Oreo. She drinks from a straw cup (WATER ONLY). She won't really even try an open cup. She still gets a bottle a day to get her milk into her, keep her hydrated enough, and we put her Singular and any other meds she might need in that bottle. She has significant dysphagia which can be a bit unnerving sometimes.

She has had a bunch of hospital stays. Usually due to pneumonia (or her allergist now thinks many of those were really asthma flares). I think that we're a lot better about managing things from home now.

She has severe white coat syndrome. She freaks out when going anywhere that's medical. A few times lately she has calmed down some once we're there, so that's been nice. We actually got her teeth cleaned on Monday. She screamed the whole time they were doing it, but was fine as soon as they were done.

She only has a few words, and those aren't clear to people who don't know her. Her most clear word is probably "baby". It's precious. She has about 30 signs, and points and says "dat" a lot.

She does not know colors or shapes or anything like that. She has recently started to enjoy "coloring" (more like scribbling). But she's happy doing it now.

She DOES NOT want to be forced into doing anything. If it isn't her idea, she's not interested. No matter if it's giving you a hug, or coloring, or eating. She'll do it when SHE wants to do it, and not a second before. She's got a very strong personality.

Her favorite TV shows are Jack's Big Music Show and Miss Spider. Her favorite thing to do is probably chase her brother around the house. She also likes to "play" Wii when AJ is playing. She holds the controller like she is playing. She calls it the "bee" though.

She's in two different schools. She gets bussed to an IU class 3 days a week. And she's at a typical nursery school 2 days a week. We're upping the typical school to 3 days next year. She loves it there, and they seem to really love her. The kids are great, and she's very happy. She started both schools in September, and only in the past week would she walk in and out of school on her own. She's made me carry her up till then. Not that she didn't want to go, she just would not walk in there. I am happy to see that phase come to an end.

I have no idea how she will react when the new baby comes. She's pretty attached to my lap currently, and I think that we'll have some jealousy. I hope that she transitions well though.

That's all I can think of for now. Great idea Chris. I have loved reading about everyone!

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Re: "Normal" for Down Syndrome- please join me
Posted by: BetsyBiscuit ()
Date: January 15, 2009 10:00AM

I haven't really posted on this board, but thought I'd chime in on this topic. Maybe being the mom of one of the "older" kids with T21 will help someone...

Paige is 11 now.

She was born full term. We were prenatally diagnosed with T21, but told she would not survive past birth because she had no viable kidneys or stomach. Turns out she had esophageal atresia and a fistula, which required surgery right after birth, along with too many follow up surgeries to count. She spent about 6 weeks in NICU, with probably 60+ stays in the hospital in her first 4 or 5 years for various medical "stuff."

She didn't sit independently until nearly 2, and didn't walk until she was almost 6. She learned to walk with a walker first, at around age 5.

She stopped walking at age 10, when severe hip dysplasia made it impossible. After nearly two years in and out of body casts, with two big surgeries in the middle, she is just now out of the cast and working on recovery. It will probably be another year before she regains her ability to walk.

We've been through lots of phases that some of you are probably going through now - you know the ones "will this EVER end?" phase, lol

Some of our favorites (lol!) were,hmmm, having to tip every chair at the dining room table over. As soon as it was picked up, it was her MISSION to tip it over again. Same with certain lights - certain ones had to be one, certain ones had to be off. Same with doors, lol.

Then there was the "hi" phase - saying hello to everyone in public - and saying it 800 times if necessary until they said hi back!

Oh, and the tossing of the shoes - that was a fun one - lost a few shoes (and sippy cups) out the car window that way!

And it always seems like one bad habit was just replaced with another one, lol. But, I'm happy to report, those behaviours do eventually go away - and I'd say Paige's behaviour is one of her strongest suits now.

When she was younger, she hated getting her hands dirty - a fleck of oatmeal on her finger was enough to stop her from eating her entire meal.

She was not a food lover and there was a lot of experimenting with temperature, texture, flavours, etc. to get her to eat at all. Happily, she is now a very good eater, and eats anything.

She is tall and super skinny - God only knows where THAT came from - my husband is 6'4" and probably 280 lbs. and I'm 5'0" and probably 180 lbs!!! No lightweights in our genes, lol.

Things Paige still can't do:

Drink from an open cup (only conquered a straw at around 7 or 8)
Dress herself independently (can help, but can't button, zip, tie by herself)
Go to the bathroom by herself - she needs assistance with clothing
Identify her body parts - can't show you "nose" "eyes" etc.
Talk - she has only a very few words "mama" "dada" "DiDi" (for Dakotah) "d-dog" "all done" "yeah" "no" "bye bye" Those are ALL the words she says. And she does not repeat them after you - she just uses them when appropriate.
Write - she just doesn't have the fine motor skills to do it. She does most of her work on the computer.

Things Paige is great at:

Paige can run the dvd player and tv like no one's business -and has been able to do that since she was probably 18 months old.
She does very well on the computer, and plays on "starfall.com" all the time.
She knows all of her colors and all of her letters. She is sight reading very well now. Don't ever let anyone tell you your child has to speak to read...its not true!!!
Paige is great at puzzles and any sort of organizing - stacking, matching, etc.
She is very affectionate, and instead of full body hugs, she has started to learn that she can touch someone on the arm with a little pat to say hello. That has been a big lesson, although full body hugs are still our very favorite!
She adapts well to all kinds of situations, and doesn't ever get overloaded - she has never thrown a temper tantrum, or had a meltdown. She is very easy to take along anywhere.
Paige potty trained quite easily, although it is habit trained - she has a schedule and goes by that. Because of her cast, she has been back in diapers twice - so we will potty train for the third and hopefully last, lol, time again.

Quirky things Paige does:
She flaps her hands and arms when she is excited.
She adopts a favorite toy, and that toy is IT for weeks and months on end. It takes her a long time to warm up to a new one.
She's a hummer - which is better than the teeth grinder she used to be!

Paige is The Great Observer - happy to sit and watch the world go by. She is quite entertained by other children and all people, even if she cannot or does not join in - she just loves a crowd, lol.

Paige is a great kid! She is significantly developmentally delayed even for a child with T21 - by all accounts, she would be considered low-functioning on every level. The reality is, she is one of the people with Down syndrome who are more "affected" if you will...

She was also diagnosed with autism last year, although as we all know, that is somewhat subjective, and always seems to be a concern when kids with T21 are not progressing as we think they should be.

Paige will probably never live independently, and is currently in a "Living and Learning" classroom at her school. She was fully integrated the first few years, but it was not the best fit for her, and the L & L'ing Program was developed in her school primarily around her needs - now the classroom has 8 children with significant delays in it. She integrates a small part of her day with her regular classroom, but her main class day consists of both academic and life skills programs. She gets all of her therapies at school as well.

I think the one piece of advise I'd offer to parents is to go with the flow - don't set anything in stone now - don't decide on the next 20 years of your child's education, don't get frustrated at a roadblock in milestones, don't panic when they take a little longer...it really does all work out in the end.



Edited 1 time(s). Last edit at 01/15/2009 10:09AM by BetsyBiscuit.

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Re: "Normal" for Down Syndrome- please join me
Posted by: BetsyBiscuit ()
Date: January 15, 2009 10:03AM

Just to add...just to show you the difference, one of Paige's best friends, who is 7 and has T21, is so, so, so far ahead of Paige developmentally - she walked early, climbs everywhere, jumps, hops, etc. She is a big talker, and is learning to read, etc...

But, she still has stuff that her mom worries about too - she isn't potty trained, she still takes a bottle, she is a runner, and has escaped her house more than once, etc.

All kids are different...

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Will...at 4 years old...
Posted by: artist30 ()
Date: January 15, 2009 10:05AM

-He breast feed well from the start (after nurses told me he wouldn't)
-He babbled early and grew quickly (1 pound a month) (after reading he wouldn't)
-He chewed at 8 months on cherrios and sat up with out assitance
-He said "hi" and "da da" at 9 months (didn't keep doing that though)
-He military crawled at 11 months and crawled normal within the next 2 months and then did what I call a mogali crawl until 16 months...
-He to my suprise started walking at 16 months! He also learned to stack blocks and clib stairs and walk on sand and gravel, all that good stuff.
-He was diagnosed with AML leukemia at 19 months old.
-while under-going treatment, he learned talk alittle more had 9 teeth comein (unlike what the doctors said would happen...seeing a trend here?)
-He learned a few more new words while at the hospital, but again he would say something new, and not repeat again for a year or more! Shrug
-he learned his alphabet quite well during this time because he loved letter factory movie by leap frog, so we watched it ALOT (when mommy needed a break with the IV pole)
-Finished chemo dec 2006 (6 months after treatment began smiling smiley )
- He went to school summer of 2007 and went to a good school (where he is now!)december of 2007
- after 6 months he was starting to sit with the class and listen to the teacher and stay in line without holding hands with someone. He again suprised me!

Will now...

-Will biggest weakness is his feeding skills, or lack there of. Hw doesn't chew, at all. He swallows, so he eats baby food #3 with stuff added to it for texture. He gets oral-motor therapy once a week by a therapist and whenever I can doit, (once a day would be good) he gets oral motor therapy by me.

-Will recognizes his name and all his letters, (he still like that letter factory movie) he knows the sounds of his letters, has a hard time saying sounds for "N", "Q", "F", "V" , "X" ,"Z",all others he does well with.
-I have not sat down and wrote out everything he says, what words he does say, he doesn't articulate well, but he has the desire to.
-He often says "Daddy", OmmY for mommy..., He has a way he says "sister" , we all know who he wants when he makes his sound. He has a way he trys to say the dog's name "Tigger", I'm impressed that the dog recongnizes Will's way of calling him. cute. He says truck and car, tree, his colors etc. He knows alot of his shapes and enjoys trying to count, he counts to 10, sometimes. Again the words he "says" are consistant sounds that I have learned to recognize as his way of saying those things. Will uses more body language combined with sign language to communicate, we almost always know when he wants something and what he wants. He makes it quite clear when he comes up to you and pats you till you ask him what he wants and pulls you to where he wants you to go.

He does not dress hisself, but he'll take things off, and run around the backyard like a cartoon character! (pants off, only his shirt on) He has a hard time taking shirts off. He is starting to go potty on the toilet!!! smiling smiley HE has gone poppy on the toilet for his teacher. His playing with other kids involves chasing them and pretending to be a monster. (like at chick-fila) He likes to watch tv, he loves blues clues, wow wow wubzy, pinky-dinky-doo, jack's big music show. He loves to dance with his sister and her friend. He loves trucks, cars and burping loudly in public, you know, typical guy stuff. LOL

I should think this about does it! Good idea! BTW! smiling smiley

Elise and Will Christmas 2008



Edited 1 time(s). Last edit at 01/15/2009 10:06AM by artist30.

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Brant is 5 1/2...
Posted by: Katrina ()
Date: January 15, 2009 11:50AM

Brant is 5 1/2 years old.

- I breastfed Brant until he was 15 months old
- Brant had Open Heart Surgery to repair an ASD and VSD when he was 8 months old
- Brant has strong communication skills and had an extensive Signing Vocabulary before adding words. Now he has dropped most of his signs in favour of saying words. He uses PECS (visual pictures) a lot at school when his words aren't understood clearly.
- Brant is not yet walking independently. He walks with the help of a walker. This is due to a spinal anomaly in which his vertebrae from c1-c4 (top 4) were malformed and compressing his spinal cord causing a significant right side weakness. He had surgery on his spine just over a year ago to repair this and is slowly getting stronger. The PT says he is "so close" to walking but just not quite there yet.
- Brant is a lightweight. He is only 28lbs. His 2 1/2 year old brother is taller and outweighs him by about 10lbs.
- Brant has just been diagnosed with Celiac Disease and we are on day 3 of a Gluten Free Diet. Because of the CD he has been sick since November with messy BM's and lots of throwing up. Before getting sick he was constantly constipated.
- Brant is mostly toilet trained. He began doing BM's on the potty a few months before his 2nd birthday but he has had a lot of accidents lately because of being sick.
- Brant LOVES the Wiggles!!!!!! His favourite Wiggle is Jeff and my boys like to play "Wake up Jeff" where one pretends he is sleeping and the other says "1-2-3 WAKE UP JEFF!!" and the other "wakes up" and does silly things and they giggle like it's the funniest thing in the world.
- Brant loves songs and "dancing"
- Brant recognizes his name and is learning to write it. He can make circles and squares and is starting to draw recognizable people smiling smiley (circle for head, eyes,nose,hair,mouth and stick legs)
- Brant loves OT and Speech Therapy. PT not so much.
- Brant is usually healthy with the occasional sinus infection.
- Brant attends Kindergarten and everyone in school knows him. He is mr. popular smiling smiley
- Brant is a "people magnet" and people are drawn to him. He does not always like this though and sometimes tells people to go away lol.

Katrina, mom to Kristina, Brant, and Owen

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Re: "Normal" for Down Syndrome- please join me
Posted by: mum2brady ()
Date: January 15, 2009 11:53AM

Wonderful thread Chris - I LOVE IT!!! I mostly just lurk here since the move too - but I'm Christie, mom (or mum LOL) to Brady, who is 6 smiling smiley

Brady was born at 37.5 weeks by c-section due to low (no) amniotic fluid, the smallest of our bunch of 6, at 6 lbs 1 oz and 17 inches long. He's still a little guy at 6, at 41.5 inches and 38-39 lbs. We knew there was a 1% chance of him having T21 from markers on our US, but it was first suspected the morning after he was born and confirmed at his 2 week check up. He never spent any time in the NICU and nursed like a champ from the moment he first latched on. He was an easy going baby, as long as his needs were met, fairly quickly - he's always known his own mind smiling smiley

His milestones have been slower - rolled at 7 months, sat unassisted at 8 1/2 months, army crawled at 11 months, quadraped (mostly, except for one foot) crawled at 15 months, walked at 21 months, jumped at 4 and started to run about the same time as he jumped. He has really really loose joints and fairly low tone, so his gait is a little awkward. He walks up and down stairs independently with alternating feet, although he will still sometimes do two feet on each step going down depending on the steepness of the stair case or how high up he is. He is very cautious and very afraid of heights and open spaces high up.

Fine motor is very difficult for Brady and he really resists a lot of fine motor activities. Drawing, coloring, lacing - not his favorite activities - but he can do them smiling smiley He can write his name, it just doesn't look very pretty and usually is written one letter on top of the others LOL

Speech and language have been very slow for Brady. He is now, at almost 7 really starting to put 3 and 4 words into phrases and sentences. Although he can sing whole songs, and has been able to do that for a long time. His intelligibility is low and for a while we contemplated whether he has apraxia, but we don't think so. By age four he had 400 signs, but he has really slowed down in his use of signs since he can speak verbally and be understood most of the time by family. He is a man of few words and for the longest time would try and get away with only using one word to get his point across. EI always told me that once he had a vocabulary of 150 words he would start putting them together - that didn't happen on it's own for Brady, it's been a lot of work to get him to put words together, except in songs or when he's repeating funny lines from his favorite movies. He is getting better at using more now, but it has taken a long time and a lot of repetition smiling smiley He isn't conversational and is much better at pointing out the concrete than pulling answers out of his head. He can tell you lots about something, but he struggles with answering social questions like "how are you" "what did you do at school today" "where did you go today" etc.... He will now make observations about things he sees and ask "what" questions, so I'm hoping more conversational language will come smiling smiley His huge delays in language have translated into significant social delays, although Brady is very social with people he knows. He is aware that he can't always keep up with typical kids his age and will often play for a little then go off and do his own thing, because he can't keep up. He is hesitant about joining into activities sometimes, even if he is very capable of doing them, when he thinks he won't be successful. Usually with prompting he will join in and have a great time. He is much better with more gross motor type games (tag, playing outside, swimming etc...) than imaginary games, where more abstract thinking comes in. Brady is not a great imaginer - but hopefully as his ability to process things improves, so will his capacity for imaginary play. He loves to play with his Buzz Lightyear and Woody toys and make them act out Toy Story smiling smiley

Academics - well concrete academics - have always been a strong point for Brady. Although his IQ test scores are low, he did fine on ingoing kindergarten tests, scoring well in the middle of kindergarten range for literacy but a little lower for math. He has known all his alphabet letters, upper and lower case since he was 3, learned the sounds all the letters make at 4, knows numbers to 29, can count to about 24, can count with 1 to 1 correspondence to about 13 or 14. Can read A1 and A2 level books and can sound out simple CVC words. Brady can recognize and spell his first name, and we're working on his last name now.

Brady doesn't have the hand strength to open round door knobs, but he's working on it winking smiley But if anything opens electronically - DVD players, computers, the doors on our van, you can bet he knows exactly what button to push to make it do exactly what he wants smiling smiley He does not dress or undress himself independently, although he has the ability for most of the undressing, and part of the dressing. He does help consistently and we are trying to encourage him to undress independently from his pj's, and then we'll work up to the rest smiling smiley He is a little like Vicki's Aaron - if he can get someone else to do it for him, why would he ever want to do it for himself smiling smiley He's tricky that way smiling smiley He cannot button or tie or start a zipper, although he can zip if it's on his pj's or someone starts it for him. Fine motor stuff is a huge struggle.

Brady loves his friends and family and pets. He loves to go and do things, from shopping to playing at the park, to swimming or playing outside. He also loves to watch movies. He didn't watch a single movie til he was almost 2 and we introduced him to signingtime, and for a couple years he would only watch signingtime and the Wiggles - he's branched out now, with ST! and Wiggles still being favorites, but he also loves Toy Story, Nemo, Spongebob, Lilo and Stitch, Monster House, Shrek, Ice Age, Kungfu Panda and the Land Before Time Series (which is strange because he hates it when people scream, but I think all those dinosaurs ever do is scream winking smiley He loves to play games - board games, wii, v-motion, and circle games.

Brady has sensory integration disorder and the things that go along with that. Loud noises freak Brady out, but he is getting a little better. I don't know if he's getting desensitized or just putting up with it, since we keep making him go to sporting events where people scream and cheer, and band concerts where clarinets squeak smiling smiley But, he's doing better. He doesn't like really cold things and eats only selective sweet things - chocolate cake with no frosting, pop, juice, chocolate milk. He won't eat fresh fruit or vegetables, but will eat canned fruit and cooked veggies. Although occasionally he will eat salad - go figure. He won't touch candy, but loves all sorts of carbs and salty snacks - goldfish crackers being his favorite.

Brady is a ray of sunshine in our lives smiling smiley He's different than lots of kids with T21 that we know, but he just amazes us every day with the things he learns and does. We couldn't live without his smile and love and hugs. He is fun and funny, loving, kind, compassionate, friendly, mostly happy, goofy, fairly easy going and adaptable. He is fun to be around and just melts our hearts every day with the things he says and does. He always has a huge greeting for everyone as he sees them in the morning, or when they get home from school or work - he misses everyone when they're gone - I don't know what we'll do when they all leave home, he will miss them so.

I think every child with T21 is as unique as every other child. It's been fun reading about all your kiddos - I think they're all amazing and superstars in their own ways smiling smiley

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Re: "Normal" for Down Syndrome- please join me
Posted by: fbfrothkopf ()
Date: January 15, 2009 12:07PM

Oh, this is a terrific thread - it should probably be marked for the "New Parents, see this first!"

Ok, La Principessa Sofia Phoebe Daniella was born 4 weeks early, the day after we ordered the minivan (our first call the next morning was to Toyota, to say we would NOT be in that day to pick up the vehicle...).

We knew about the extra chromosome ahead of time, so she'd already had 3 fetal echos. Had a regular echo on Day 1 - minor heart issues including ASD, VSD, prolapse mitralvalve, pulminary stenosis, and a PDA. So far, things are healing nicely on their own, and she has not needed any cardiac intervention. After her sedated echo last summer, they dismissed us for 2 years.

She had to be "finger-fed" for about 3 weeks, until she woke up enough to latch on. Once she started nursing, she was a pro, AND she slept through the night until after her second birthday. The finger-feeding was tough, but since I knew what I was doing with nursing, I was able to hang in with the pumping. I'm not sure I would have been able to succeed if she'd been my first child.

Let's get the health issues out of the way: I stayed off of dairy for her first year while nursing. She nursed for 22 months. This year we are treating her as if she has a wheat allergy - blood tests have been negative, but we saw some significant positive results (rash went away, distended belly calmed down), and it's worth the experiment.

She eats just about EVERYTHING. Peas and Edamame are her favorites, along with Grits (EVERY morning) and yogurt. And anything that doesn't move too fast... She can use a fork and a spoon and a knife better than her 9 year old brother, and she's very ladylike with her napkin.

She will turn 4 in one month - oh my! After three very full years of Early Intervention, she goes to preschool now 5 mornings a week. She gets Speech Therapy 3 times a week, OT I think 2 or 3 times, and PT twice a week.

She loves school, and I'm told the kids in the inclusion classroom love her. They flock around her when she shows up late, and at parent events, all I hear is "Oh, that's Sofia! My child talks about her all the time!"

Miss Sofia entered preschool last year with more than 200 signs (thank you, Signing Times), and has added to her sign vocabulary over the year. She has also had a huge verbal spurt this year, and I've lost count of how many words she can say. But she will only put words together with prompting (want-more-crackers- please). We are working on building multi-word phrases. Her IEP had specified Signed Exact English, but we have quickly moved into more verbal prompting, since she's doing so well.

She's very bossy! And opinionated. If she wants you to sit down and read with her, she will say firmly "DIT. BOOK." And if you sit in the wrong place, she'll let you know. When playing ball on the floor, she wants you to have your legs in the same position as hers - which is generally not possible, since she is so flexible. I've NEVER been able to do a split, and she just sits like that!

She started walking on her dad's birthday when she was 26 months (makes it easy to remember). She can run, march, walk, jump. Sometimes she takes me through Target directing me as to how to move.

She can also climb. Everything. In the winter, she's mostly limited to her brothers' bunk bed (and then she proceeds to dismember everything big brother has on his shelf, so we keep the boys' door locked). In warmer weather, she tackles the playground at the elementary school with no problem.

We have a swing in a doorway in the kitchen, and she loves to hang over it and swing, or spin around (sometimes bonking her head on the doorframe). She also likes to hang by her hands - I have to watch her with towel bars.

She loves imaginative play, and will play with baby dolls for hours. She will also follow her brothers around with a sword or light saber - as long as she has properly accessorized with a purse, also!

She just switched from months of "Madagascar" every day - now we are stuck with "Monsters, Inc." (which she specifies with a huge scary roar).

She knows most of her colors, both verbal and sign. She still gets red and pink confused, and purple is tough to distinguish. Her favorite color is yellow.

She knows lots of animals, all by sign and some verbal (many she can at least do a noise). She has NO fear of animals, and will try to approach dogs three times her size.

She adores her brothers, in very different ways. She calls Sam "Boy" with great adoration - he's the gentler brother. Micah is more of a play organizer. She also loves her babysitter, Emily (she says "emilemily"). And she's got Mommy and Daddy totally wrapped around her little finger.

She wants to be my baby, so there are many things I know she can do for other people (like teachers or Daddy or Emily) that she refuses to do for me - putting on her shoes, getting dressed, etc. When possible, I try to have someone else work with her now (even 9 year old Sam can get her to do more than me).

She usually poops on the potty (unless she's really engrossed in something), but still wears pullups all the time. She won't always sit on the potty for me, but will for Daddy and Emily.

She wakes up early - 5:45 - and hungry and demanding. "Mama - wake - eyes (glasses) - grits - walk" and then she pulls the blankets off me. Yeah.

She totally disses most women - won't even look at my sister. But she's a complete flirt with men. I anticipate some problems when she gets older.

Recently she's gotten slightly less outgoing, as she gets more stubborn about who to talk to. But she's a charmer, and will say "hi" (or more likely "bye") to everyone. Loves to dismiss people with "bye" and sometimes a push.

In recent months she's taken to chewing on her fingers, and pciking at her nails when I force them out of her mouth. I'm at my wit's end on how to stop her.

She's been my generally healthiest kid - minimal ear infections, less issues than her brothers.

When she goes to her brothers's school, she thinks SHE goes there (perhaps she thinks she owns the place), and she makes a beeline for the kindergarten classroom. We are hoping she'll be able to join them there in another year and a half (it's a private Jewish Day School).

She knows what to do when I light the Shabbat candles on Friday nights, or when we do other religious rituals in the house. When she sees the candles ready, she yells "hat - hat", and runs to get a yarmulka. Then she comes back, gets in place, and covers her eyes (similar to what I do when lighting).

She loves music and dancing. She adores Angelina Ballerina (yuch!) and plays with Dora toys quite a bit.

When frightened or upset, she doesn't usually cry, she just hides her face and freezes. Cries usually only when physical injury occurs.

She is so much FUN to be with (unless I'm trying to nap). Oh, and she's figured out how to use my iPhone to call people on my Shortcuts list. Smart little cookie.

Enjoys lining things up (the other day she started with bottles from the liquor cabinet, but I redirected her to her dolls):
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Francine

Francine
Blog: 2 Pirates and a Princess [fbfrothkopf.blogspot.com]

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Re: "Normal" for Down Syndrome- Patrick...age 9
Posted by: bforaker ()
Date: January 15, 2009 02:54PM

Hi! I haven't been here in ages but I think this is a great topic and very helpful.

Patrick was born full term at 8 pounds. He did have the AV Canal defect and had to have open heart surgery (at UCSF with Dr. Mohan Reddy) at nine weeks old. It was successful and now we just go for check ups every 2 years.

I was able to successfully nurse Patrick almost immediately and I am thankful that he was my third child because the lactation people were very discouraging about that idea. I nursed him for about 18 months.

Patrick was very healthy with no ear infections and rarely a cold until her was 34 months old...at that point he was diagnosed with Acute Lymphoblastic Leukemia and things really sucked. He had a 3+ year chemo regime. He had extreme fatigue from the chemo, and serious eating issues during that time. Up until that point he was a great eater.

Today, three years after finishing all treatment, our biggest issue left over from treatment are his eating habits. He's all about the carb...will eat pasta, bread, cereal, etc; he loves eggs and toast, but he infrequently eats fruits and veggies and the only protein is eggs and turkey and sometimes peanut butter.

Patrick crawled on all fours, after doing the bear crawl for a very long time. He walked for the first time right at his second birthday but then he stopped walking with treatment from chemo so had to learn all over again. Pat Winders was a huge help for me then.

Patrick took up signing easily and has been in many Baby Signs videos. He could really sign for his needs when he was nonverbal. I remember having a serious fear and anxiety about Patrick never being able to speak but it really started to come on around age 5 and now at nine he can speak to almost anyone. Sometimes he is garbled but he can get his point across.

Patrick was interested in potty training around 3 years old but with the chemo and everything that had to wait until he was 5. He is blessed with a camel bladder so he was successful quickly.

Reading has really helped Patrick with his speaking! The visual support given in reading helps so much with tongue placement and pronunciation it is amazing.

Patrick is fully included in his 3rd grade class in our local Catholic school. He has a full time aide that is working toward independence in larger chunks of the day. His class is exceptionally wonderful with him and it has helped him tremendously to have the same peers year after year in his class. His school is small and very predictable so that helps him as well.

Academically, he is behind his peers, especially in math. He is currently working on money and really having difficulty telling the difference between a nickel and a quarter consistently. He can count by fives and tens and we are working on that with the money, playing many games from the book for math learning and DS from Woodbine House.

Patrick's reading is a strength for him. He is reading at high second grade level and very motivated. Just other day he brought home a Hardy Boys book to read...he loves mysteries. There is no way on the planet he could read the Hardy Boys but he was quick to tell me that I couldn't read it (nor his sisters) because this is a book for boys. He also listed all the boys in his family who could read it! smiling smiley

Patrick has really good social skills and loves people. He's super friendly and ready to celebrate anybody's birthday. He loves celebrations of all kinds but his most favorite is Christmas...he talks about it for months and saves cookies routinely for Santa all year long. This year my two year old wanted ice cream from Santa and Patrick insisted that Santa would not give it to her...it needed to be a toy. When Santa did give it to her, our two year old looked at Patrick in shock and said, "But Patrick you told me no!" I was waiting for a sheepish reply but he was quick. He just smiled and said, "I was just kidding, look!"


Patrick cannot tie his shoes, button a button reliably, or handle snaps, (he wears elastic waist pants to school) ride a bike (although we're close) or swim all the way (we're close on that too!). He is getting stronger and can just now play on the bars with his peers at school but very limitedly. He loves it. Oh and our recent full battle has been about getting himself dressed for school. We have been too lenient in helping him to get ready and we are paying for it now. Since school has started he has been dressing himself this year and it has been a big battle but I think we may have rounded the corner on that one. Ugh!

Patrick is very motivated by music and participates in these mini-musicals through our local art center. He loves it!!! He hustles for nothing and often drags his feet going anywhere but he will sprint to this from the parking lot.

He absolutely LOVES High School Musical and creates "shows" all the time at home. He also loves TV and that is his motivation to have a good day at school, TV time. He worships our Friday night pizza/video party night and will do just about anything to get to participate in that. Bribes really work for Patrick...and distraction. He is also very motivated by praise and encouragement; yelling doesn't phase him at all and doesn't get him to behave at all. Oh and Patrick still loves Barney. He was his friend through many a time at the hospital and provides comfort to Patrick still. Just a few days ago I found Patrick in bed pretending to sleep and Barney in the middle of his room. He was hoping Barney would "get real". I wish he would! smiling smiley

He has a big brother, a big sister and a little sister. His little sister has become a "partner in crime" with him and they are always up to something. ALthough she is only two, she can gross motor wise do things better than Patrick (like ride a scooter); right now it's motivating for him but I hope it won't get to be discouraging. He loves being the bigger brother, bossing her around. He loves everybody in his family with great passion and is an awesome snuggler. I pray that Patrick can have a honey to snuggle with when he gets older because I know he will love it!

He's an exasperation, an inspiration and best of all my boy. He's sunshine, goodness and giggling joy wrapped up into a nine year old guy. I'm so grateful for him! He instinctively knows what's important and helps me to keep things in perspective constantly.

Chris, thanks for this!!! Beth

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Re: "Normal" for Down Syndrome- please join me
Posted by: Momtoaiden ()
Date: January 15, 2009 06:02PM

I guess Aiden is just as normal as most:

Aiden 29 months

Aiden was born at 34 weeks gestation via c-section due to one very small pocket of amniotic fluid. And he spent 29 days in the NICU gaining the 1 lb 3 oz needed to come home.

Aiden first rolled over at 3 months.

At the age of 5 months, he underwent open heart surgery to repair an AV Canal Defect and Tetralogy of Fallot (a heart only his mother or cardiologist - but not the surgeon) could love. He was given a 3% chance of survival following the surgery. And spent almost 6 weeks in the hospital.

Aiden then spent another month in the hospital at 9 months for complications from his heart surgery. He still has one more surgery to undergo regarding a leaky mitral valve.

He learned to army crawl at 15 months. He never has done the "typical crawl" and refuses to. Today at 29 months, he chooses to 'butt scoot'.

At 18 months, I took him to the dentist to see if he even had teeth. A week later his first tooth came through - a molar. He know has 10 teeth, they come in pairs and he knows how to use them.

Aiden's main source of nutrition is Pediasure. He won't eat enough of the real stuff to maintain his weight. But he loves pizza and baby back ribs.

Aiden's first word was at 11 months. He now has 5 words in his verbal vocabulary and dozens of signs - not typical signs, but Aiden signs. We know what he means at that is good enough for him.

Aiden was 23 months before he stood supported for the first time (after being positioned) and 25 months before he stood up by himself (supported).

Aiden was 26 months before he started cruising.

Aiden was 28 months before he crawled up onto the sofa for the first time by himself.

His hair is naturally spiky. It will not lay down regardless of how much styling product is in it.

He can open any door, but can not reach the handle on any of them (future escape artist?)

He can put his foot in his mouth - literally - without bending his knee.

He can do the spilts 360 degrees.

The child can sleep sitting up.

He has just learned to use a straw. (This is good according to school)

He hates the dog, but loves the chinchilla.

He hates the vacuum unless it is turned off.

If he thinks something is remotely edible, it will go into his mouth.

It is impossible to take a shower or shave my legs without Aiden's assistance.

He loves to watch NASCAR and football and cheers for both teams.

He will shake your hand and tell you hi. He will also "high 5" you.

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Sir Rhett.....
Posted by: mom2rhett ()
Date: January 15, 2009 06:50PM

Rhett is 3 years old.

He was born at 34 weeks gestation, and was a scrawny little chicken when he was born, but he was oh so cute!!

He was born with a Complete AV Canal, Another large VSD, Pulmonary Stenosis, Pulmonary Hypertension, as well as a congenital Diaphramatic Hernia, and a tethered spinal cord.

The Hernia and spinal cord weren't diagnosed until he was 16 months and 30 months. It was a huge blessing that his intestines were not in his chest when he was born even though the hole was there, otherwise with his heart condition he wouldn't have made it.

He is fed through a G-tube and has had a Nissen due to severe reflux that was causing aspiration issues. Which in all reality he still aspirates even without eating by mouth and refluxing. Our family joke is that he aspirates on air.

He has had 6 major surgeries in his three short years. Not to mention countless hospital stays.

Rhett has been on oxygen off and on his whole life, but always uses it at night. He has issues with a super slow heart rate, but we **think** it's normal for him.

I don't remember when he started rolling over, I think it was close to 8 months old, which is about the time that he started sitting as well. He started walking at 26 months, but has never really gotten over that whole toddling walk thing. He still to this day looks like a brand new walker, and falls down more than he's on his feet.

He also walks with his head down, and doesn't watch where he is going. smiling smiley (Kinda like his dad)

Rhett's strongest point in his development is his speech and communication skills. He has 300+ signs and 250+ words. He is using signs combined with words to make sentences, and is just an amazing talker.

He struggles in the fine motor and gross motor skills, but that's okay. He has just barley grasped the concept that he can acutally propel himself forward on a ride on toy. Now he runs everyone over. smiling smiley

He loves animals, especially farm animals and although at first he will try to convince you that everything is a cow and says moo, he really can identify most animals along with the sounds that they make.

He hasn't started preschool yet due to his health concerns, but we are hoping he will get to go in the spring/summer.

Rhett loves to play with his siblings. He can often be found playing guns with his older brothers and yelling "POW!! Oooo Dead!!" Him and his older sister love to play babies together, and him and Daddy love their nightly tickle matches.

Rhett and I spend our days together. There aren't many times that we are apart. Mommy is the only one that can put him to sleep, and mommy is the one who does his feeds and changes his dressings.

Sometimes I wonder if he is part fish. He is obsessed with water and would spend his life in the tub or in a swimming pool if I would let him. We have found that if we ever want to teach Rhett anything the best time to do it is when he is in the tub.

That's where we have practiced his signs and words. However it may be that way just because it's the only place I can actually get him to hold still for more than two seconds.

Our lives have been blessed beyond words having this little tyke in our lives. We have learned that no matter what he does and when he does it, well, that's normal for him. smiling smiley


Pam Wife to Andy
And Mom to.......
Dakota 13 yrs............................&.............................Hunter 10 yrs


Chloee 6 yrs..............................&.........................Rhett 3 yrs (Ds)



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Re: "Normal" for Down Syndrome- please join me
Posted by: E ()
Date: January 15, 2009 09:16PM

Oh this is wonderful! I'll come add my own when I have a bit more time smiling smiley

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Re: "Normal" for Down Syndrome- please join me
Posted by: myally ()
Date: January 15, 2009 09:31PM

Allysa is 15 years old. And is in grade 8. She is in regular high school classes with modifications. She says she wants to be a "Cooker" when she grows up....she loves to help in the kitchen. She brought home an "A" in foods class last term!

She was 7lbs 14oz when born. At 4 months old she had open heart surgery and
weighed only 8lbs 9 oz.
She rolled over 2 weeks after her OH surgery. Did the bum scoot at 7 months,sat unassisted at 9 months,walked at 16 months. She could feed herself with a spoon at 1 year and was off the bottle using an open cup at 14 months! She could ride a two wheel bike at 7 years and tied her shoes at 8.

Allysa go all her teeth at the typical times and lost them all the same way. She has NO cavities and her dentist is very impressed with Allysas beautiful pearly whites.

Allysa was potty trained by the age of 3 1/2 but wet the bed until she was 12.

I CONNOT get her to stop sucking her thumb. even the worst tasting stuff wont work.

Most people have a hard time understanding what Allysa is saying. But that doesnt stop her from talking your ear off! And she is a huge self talker and will talk to her "people" everyday. She does her "peoples" talking too so i can hear the whole conversation.

Allysa has a hard time staying on task . I have to constantly tell her to do what she is sposed to...IE every morning for school i have to go throught the steps of getting dressed, brush hair, make lunch, have breakfast...etc. If i dont keep on it...she will take an hour to get dressed....or brush her hair etc...


I love it when Allysa walks in the door after being anywhere. She yells..."I'm home. Did you miss me?" And giggles like crazy when i yell back "YAy Allysas home. I sure missed you." And when the people she loves most come for a visit she says "yay your home" as they get a huge hug and kiss.

Allysa can be very social but prefers to be on her own. Sometimes i have to beg her to hang out with us.

Ally can read at a grade 3 level and struggles with math. She knows most of her money and is learning more as i am giving her a list and money to shop with when we go shopping. She knows $5 can buy her her fav magazine though!

speaking of magazines...Allysa LOVES looking at them! teen mag are her fav but just about any will do. She will cut out all things she loves from them and store flyers. She has a wooden box FULL of these cut outs. And she will sit and line them up and cover her bed floor etc with these cut out paper things.

Give her pop,chips, and a movie and we have a party!

She LOVES music. mostly 80's stuff like my ABBA, Billy Joel, Police, etc...but really loves Hannah Montanna too.

Allys also LOVES LOVES LOVES to swing. No exageration when i say she will swing for over 3 hours straight! The palms of her hands are one big calous. I believe this is what helped her trim over 10 lbs and stay that way. She wears a ladies capri pant size 6 sometimes 8 and they fit perfect!

Allysa has chores that she does daily. Every sunday Allysa, her sister and myself have a paper route that we do. I drive,and the girls hand out almost 200 papers. And Allysa LOVES it when the people she delivers to are waiting for her. She gives em high fives and celebrates that they got the paper!

She is a fish and can swimm in the deep end, under water, and off the diving board. But she cant swim on her back and hates it when I try to help her on her back.

I know i could keep going...

She is unique just like everyone else.

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Re: "Normal" for Down Syndrome- please join me
Posted by: Roselle ()
Date: January 16, 2009 12:56AM

I mostly lurk as well but here is an update on my Angel Bear

She is 16 months old.

Her strengths are definitely music and being able to memorize the hand movements to the "Wheels on the bus," "if your'e happy and you know it" (the clapping part at least), "shake your sillies out", "put your finger in the air" and so many other songs.

She wakes up her dad every morning and days very clearly "daddy get up." or when she wants to wake anyone up she says "get up."

She signs 20 or so signs.

She is standing and learning how to walk which we are absolutely excited for her.

She is trying to feed herself and loves most food.

She is very helpful when we dress her. She puts her arms and feet through the holes.

She loves to uncover my belly and say "baby." (I am 8 1/2 months pregnant with a baby girl)

She knows how to blow kisses, says hello and goodbye. Sings songs on her own..

The list could go on and on, but she does do a whole whole lot whether it's typical or not we are so proud of all that she can do.. I am excited to have our new baby girl too cause I know Angel Bear is going to give her little sister so much love and teach her so many things




posted by Roselle


I'VE BEEN TOUCHED BY AN ANGEL




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Re: "Normal" for Down Syndrome- please join me
Posted by: annikaleigh ()
Date: January 16, 2009 12:47PM

Our Emma Sage......

Is now 7 1/2 years old and in the first grade. She loves school and is blessed to be in a wonderful enviroment, fully included, in a co-teaching classroom, there is an aide for the class who assists anyone that needs help....sometimes Emma Sage gets assistance, most times her teachers report that she works indpendantly.

She was born five days past her due date, at home [unexpectedly] and was 9lbs 2ozs.....she took a good 24 hours to latch on, but then became a champion nurser, ending at 3 years 10 months [yes, just call me Bessie]

She reached physcial milestones within the typical range, walking at 15 months, running, jumping, skipping, hoola-hooping, rollerskating, bike riding, kart-wheeling, all at an even pace. Physical, both gross and fine motor skills are a strength for her.

She has taken dance lessons since she was 3 years old, and this is by far her most favorite activity to perform.....she tells me she is going to be on 'So you think you can dance'.....but this week, after watching American Idol, she is determined to also be on 'Amercian Idol' - too bad she is tone-deaf... This year she is taking Hip-hop/Jazz, as ballet was getting a bit too structured and boring for her....she LOVES to move, so the pace and movements with this form of dance is perfect for her. Her recital will be in June, I can't believe it is going to be her 4th one. Each year she steals the footlights and spotlights and brings down the house.

Her greatest struggle is articulation....which she works very hard on. She is very clear reading [as the pace is slow and she can enunciate each word] but when you have her in a conversation and she is excited....well, jumbled words will flow...............

Right now her IEP is the typical first grade curriculmn, and she is mainting the pace with her peers, I do know in time that will slow down and the teachers are wonderful where we are, so my hope of hopes is that modifications will just be seamless implemented when the time arises for them.

Our 'normal' for Down syndrome recieved a different kind of normal this past year, as we finally got a complete karaotyping of her cells [since she was born unexpectedly at home we did not have cord blood to be drawn and then they were unable to get enough cells to test more than 4 cells from a draw to have a complete karotyping done and I just never thought about it again] but this past year when we were having all her labs done, her doctor suggested we get a complete karotyping, so we did and we found out that Emma Sage's Down syndrome is different than most, as she has mosaic down syndrome, where some of her cells have 47 chromosomes and some have 46.

She is the light of our lives......her spirit is radiant, and I don't just say this as her Momma, but as an observer, as she goes into a room and lights up the room with her smile and enthusiasim for life. She is truly a good-will ambassador and everywhere she goes she makes friends, from young to old.

She can be stronged-willed at times, but can be reasoned with [or put in her place easily...lol!!!] and I am finding as she gets older, the strong-willed moments are less and less.

Emma Sage has a true love of life and of family. She adores her siblings, especially her sisters. She misses her oldest sister dealy who is away at college....and will breakdown and cry when she hears us talking about her sister Greta and making her choices for college next year.....this Momma's heart aches to think of the loss she is going to feel when they both are gone so much of the time. One thing that is so sweet is that Emma Sage reads her nightly reading homework on the phone to her big sister......I love that they have this little routine set up. Katrina keeps telling me I have to get this program so Emma Sage can sit in front of the computer and read to her and she can see and hear her?!?

Emma Sage is quite active....she takes riding lessons [and rides independantly, I have a clip on my blog if anyone would like to see, it just makes my heart burst to watch her in control of such a beautiful animal....[emmasage.blogspot.com] you just have to scroll down to September 16th.

She plays indoor floor hockey and next fall will follow in her sisters footsteps and play girls field hockey [I started the league years ago and will go back to coaching this fall], she is taking gymnastic lessons with a coach that is putting together a special olympic team [and a friend of mine] and swimming lessons.....as I said before, this little girl loves to move, move, move, so we keep her busy to spend all that energy she has.

She did one really cool thing this winter and we have gone back a few times....she started rock climbing. We went with her brother and his Boy Scouts troop and she was able to get on line and climb up and I was her belayer [I'm a former rock climber] It was so cool to watch her persistance and finding the right hand and foot holds to climb up the walls.......She also loved the part of hanging in mid-air and being lowered to the ground. The climbing gym is about an hour and a half away, but I am hoping that we can do this a few times a year as she grows up and that she might be able to do some real outside climbs when she is older.

Oh, and the biggest accomplishment she achieved this year is she ran her first 5K race on Thanksgiving......she did it!!!! She wanted to give up half-way through, but something clicked in her [maybe all the cheers from the sidelines?] but she dug in and completed the whole 3.1 mile race. So, we will try and do a few a year and who knows, by the time she is a teenager she might be able to have the stamina to complete a 10K or even a 1/2 marathon someday........whatever she wants we will be right by her side helping her and encouraging her on.

So, that is our 'normal' for Down syndrome.........a life that is full. Full of joy, love, happiness, excitement, patience, laughter, dancing and song.

Oh, and one very special thing, my little girl is engaged to be married!!! lol!!! Yes, this past summer a very dear and sweet boy [our own Ryan Quinn] got down on his knees and asked Emma Sage for her hand in marriage. She answered with a big YES!!!!! [emmasage.blogspot.com] Pictures of the moment are on our blog, scroll down to July 13th!!!!!

Chris, I thank you for starting this thread, as I am loving reading about our unique and very special children. We are truly blessed by gifts that present themselves sometimes in the smallest package and others in grand ways.

I am also guilty of being a lurker as I could not figure out how to log back on here....but I've figured it out and we are here!!!!

Peace and love, Tara Marie

My four children....Otto - 12, Greta - 17, Katrina -19 and Emma Sage -7

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Re: "Normal" for Down Syndrome- please join me
Date: January 18, 2009 01:13AM

I usually lurk and haven't posted at all on this board yet, but I love this thread.

David is seven years old and in first grade. He was born at 36.5 weeks and of my three children had the easiest delivery by far, for which I am eternally grateful. He was in the NICU for a week due to persistent fetal circulation. He did not have a strong enough suck to breastfeed well at first, but I worked with the lactation consultants on pumping and finger feeding and after several weeks of that he nursed for 15 months.

Davy rolled over at 10 days old but that was just because he hated tummy time! His muscle tone is quite low. He was able to sit independently around one year of age, army crawled until he was around two, and walked at three years and three months. He had early intervention and some private physical therapy, including aquatherapy, but he never liked it because it was so difficult.

David's speech is coming along. His first word was "bath" -- actually a combination of the sign for bath and making a ba-ba-ba sound. (He still loves baths and wading pools) I'd have to look up how old he was, but it was probably between 12-18 months. He learned a lot of signs and words but couldn't use 3-4 word phrases consistenly until this past year or so. He tends to stammer and his tongue gets in his way (he says "le" for "the" as if he's speaking French) so I often have to translate, but his teacher understands him pretty well and he's definitely improving.

We did three years of preschool since David's birthday is in the summer and it was definitely the right choice to wait until he was 6 to start Kindergarten. He attends a public school about 2 miles from home. He is integrated into a gen. ed. classroom with the help of his spec. ed. co-teacher and para-professionals for 60-70% of the day and spends the rest of the time in the spec. ed. room or other pull-out (speech). He is in a guided reading group with peers. Reading is one of his strengths as he has always loved books and we read a lot at home. He can write all of the letters pretty well and some words too. He's improving in coloring and drawing. Math is harder -- he still doesn't count well and I should practice that with him more.

Potty training: Ugh. I've been pushing it for about four years now. He usually does not tell us when he has to go, but stays pretty dry with potty visits every 1-2 hours. We have him sit on the potty for five minutes after every meal, and if he poops he gets to watch a video.

Davy loves music, books, movies, playing on the computer, playing Wii games and Rock Band with his dad(love the no-fail mode in Rock Band 2), going to the park or McDonald's Playplace or Menard's, and his favorite toys are his Mickey Mouse and a blue bandana, both of which he waves and shakes like a pom-pom. He will not ride a bike or trike, though he sometimes tries sitting on them. I think he is too unstable in his torso to really do it, but I want to find a good solution because his sisters and I love to bike!

David loves his sisters. His older sister (age 10) is very good with him. She loves to laugh and he loves to be silly, so it's a good combination. She can often get him to do things when he's being stubborn and I'm being too impatient. Her name was another one of his very first words. Davy was 23 months old when his younger sister was born, and he laid on the floor and cried for two days when we brought her home. He could hardly even look at her for a week, and it was heartbreaking at the time. Now they are great friends as well as great rivals! Sometimes they play together so sweetly, but then he'll take something of hers or she'll try to boss him around and then I have to keep them separated for awhile!

Medical: Mitral valve prolapse not requiring surgery, hearing loss in right ear, very near-sighted in left eye (glasses, had surgery for strabismus, tried some patching but now using atropine to prevent right eye from focusing in order to strengthen lazy left eye), treated for hypothyroid, somewhat chronic constipation (one enema, added fiber and water to diet, Miralax as needed). No food allergies and a pretty good eater. He drinks from a cup but prefers to use a straw.

This got long! I'm thankful to be able to share our version of "normal" and to read everyone else's too.

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Re: "Normal" for Down Syndrome- please join me
Posted by: kj_26 ()
Date: January 19, 2009 06:58AM

I am hardly here these days, but I am Kris, mom to Jennifer who is 6.5 years old. Here is our story:

She was born overdue! We were lucky that I scheduled an ultrasound a couple days after she was due as her fluid was very low and she most likely would have died within the next couple of days.

She was a whopping 8 pounds 11 ounces - open PDA at birth, also couldn't pass a hearing screening - she is mild/moderatly hearing impaired but it still may correct as it mostly seems to be fluid related. I nursed her for about 4 months and it was hard work for her. It took her about that long to learn how and then I had to go back to work, so I quit.

Some of the early gross/finemotor milestones I do remember... she would hold her own bottle at about 5 months as I went back to work and I would prop her in my bed as I got ready for work. She crawled at about 14 months and walked at 20 months. She could pedel a trike around age 3 - 4 and rode a bike with training wheels at about 4 - 5 or so.

We started potty training at over age 5 (school had brought her to the toilet and she would sometimes pee, but she could wet minutes later) and she started taking herself after 4 days and I considered her trained in about 9 days. I describe this as choosing the right timing, and getting lucky!

She babbled a lot as a baby and I remember thinking she is saying words, but then we found she had lots of speech disorders/hearing loss, so that sort of stopped. She signed a lot and I remember that she could sort of sign a couple of signs to the song twinkle, twinkle for her first Christmas which she was about 9 months.

She signed as her primary mode of communication until she was about 5, she had some word approximations, but hard to understand. She probably knew 4-600 signs, lots!

She has a bunch of speech disorders, apraxia, dysarthria, dysphonia, so speech is really difficult for her, but she is progressing each year, so that is exciting! She does say sentences now, many of them are sort of the "canned phrases" but more and more novel stuff too. I remember early on speech therapists, not being very positive about her ever being able to speak, so this is very exciting to hear. Her articulation is extremely poor and is probably understood less than 50% of the time.

She has had 6 sets of tubes or so, and currently has a perforated ear drum which will need surgical repair. Still hearing issues, but we hope most will repair - she uses an edulink device at school part of the time.

She has some processing issues, auditory, visual, as we know she has trouble with complex information in either area.

Her social and communication abilities were very different than most kids we met with T21 and we had her evaluated for autism. They suspected that she may be PDD-NOF, but they also said that it could be her degree of MR, so they wanted us to come back for testing. This year however, at age 6, she started interacting socially and initiating communication quite regularily. So I am not going to bother to retest her. Of course she has learned all the naughty stuff too, but I will take it!

Has worn glasses since she was 2 and done a fine job, but she is very far sighted - 5.5 and more in each eye.

Reading is her strength, she could sight read some words at 14.5 months believe it or not and has continued to develop well in this area. We have used reading to help her speech abilties. She has the ability to sound out words also. She is doing generally well in school in this area.

She struggles with fine motor, she just opened a door for the first time at age 6.5 Learned how to write upper case letters at age 6 - still very rough, but evolving. She has taken a class for two summers at our therapy place, they use handwriting without tears and it has helped tremendously.

Math, not so much smiling smiley still working on basic concepts at age 6.5.

She is learning how to spell, we use word tiles and then she attempts to write them. She doesn't spontaneously write words or anything like that.

She is in our neighborhood school 1st grade, with pull outs for Math, some of her speech, adaptive PE. Her OT occurs in the classroom. Our school seems very good with kids with special needs.

This is her 4th year in community dance - tap, ballet and jazz. Her first year, she spent mostl laying on the floor smiling smiley

I know the most important thing I have learned is there are strengths and weaknesses in all our kids and their skills are very scattered for the most part.



Edited 2 time(s). Last edit at 01/19/2009 07:03AM by kj_26.

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Re: "Normal" for Down Syndrome- please join me
Posted by: Anonymous User ()
Date: January 20, 2009 01:06PM

This is a great thread. It's been fascinating to read about everyone's kids.
Yona is turning 9 years old in 2.5 weeks. She is in grade 2 in a regular school with a full time aide and modifications.

Yona was born at 37.6 weeks weighing 3.2 kilos. She came out in a hurry after about 30min of labor, with dh assisting the midwife who was taken by surprise (we were not yet in the delivery room). Yona spent 3 days in the NICU and then another 8 days in special care. She had breathing issues, jaundice (spent one day under lights), some blood sugar thing which resolved after a few days and myolukepenia which resolved after a few months (very low platelets).

Yona was a very sleepy baby for the first 18 months. I had to wake her to feed her through the night. She's making up for that now! She sat unassisted at 12 months, crawled at 18 months and walked at 24 months. She can ride a bike with training wheels but doesn't particularly enjoy it. She loves the trampoline and can do a somersault. Yona has had swimming lessons from age 3.5 and could swim independently by age 5. She is a fish in the water and continues to swim every week. She can do freestyle, backstroke, and a form of breaststroke. She can also do butterfly for a few meters.

Health wise, Yona was born with a PFO which closed last year by itself. She has been wearing glasses for 2 years. Last year she was diagnosed with hypothyrodism and takes medication for it.

Yona's gross motor skills are very good. She is quite hypotonic in her shoulders and upper arms but swimming and spending a lot of time hanging in the park from bars helps build up strength. Yona does karate with special needs kids in a therapeutic setting once a week and loves it. She swims once a week. She was doing dance but we recently cancelled it since it was too much for her. She also has ST once a week.

Yona's fine motor skills need a lot of work. She can now do up a zipper most of the time but cannot do a button or laces. Her writing is not very clear and she gets tired after writing a few sentences. Her OT is working with her on this at school.

It took almost a year to toilet train Yona and she was fully trained at age 4.5. But that was an incredibly difficult year. She trained herself at night a few months later. Yona used to be a runner and escape artist. I used to avoid going to crowded places or really anywhere with all 3 kids as she was too hard to control. The good news is that over the last year or two her behavior has really improved and she is a pleasure to go out with. So yes, there is hope. She occasionally shouts for no reason or when someone bothers her. It makes people jump. She will occasionally spit at her friends when she is angry. She does not like people invading her personal space and will let them know!

Yona is bi-lingual. We speak English at home and with the family. She had years of ST in English. Yona also speaks Hebrew in school and her surroundings. She used to mix up the languages a lot but now she understands they are 2 different languages and she knows who to speak to in which language. She also thinks she speaks French since there are a few French speakers in her class (but she doesn't know a word). Yona's love is reading. Ever since she learned how to read last year she doesn't stop (in Hebrew). We have to pull her away from books sometimes. We have not taught her to read English yet. Maths is a real struggle for her. She does her own program at school and it is going very slowly - 2 steps forward, 1 step back.

Yona attracts people. There is something about her. She lights up our family and has taught us patience, love, tolerance and much much more. She has a special relationship with both grandmothers. She calls my mother in Australia and tells her "Omi, I miss you. When are you coming back". Yona gives the best hugs and kisses. Lately she is much more huggy. A few years ago, she didn't give them out too much. Yona thinks she is just like everyone else. I don't think she is aware yet that she has DS or is different from others.

I could go on for pages and pages but I'll hand the floor over to someone else.

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Re: "Normal" for Down Syndrome- please join me
Posted by: CherylV ()
Date: January 20, 2009 01:46PM

Our youngest daughter E was born with DS and had a VSD that closed at one month. Other than that she has been very healthy with tubes in at about 18 months, T and @ at age 5 as she was a mouth breather and later surgery for an unrelated to DS thyral glossal duct cyst (which I had thought was just her putting on some weight around her neck due to low tone at first.)

In terms of early intervention services and funding today, 1983 was actually a much better time to have had a child with DS at least in Virginia for three of reasons:

1- There was plenty of funding and providers of early intervention services both for those young children with a disability and also at=risk.
2- The schools were incorporating the education of children with disabilities more fully with mainstreaming as policy and also used the "medical model" in terms of evaluating the need for related therapies - unlike the educational model today.
3- At the time private health insurance also much more routinely covered related private therapies. We had years of private speech therapy. Today, it is much more limited and not based on developmental model at all, but on the medical model.

I would say growing up with sisters at birth aged 3.5 and 7 that our family life was more typical than not. E had preschool experiences with both special education and regular education settings, culminating in a 5th year in two regular preschool programs with 5 sessions of therapies before and after sessions at the local neighborhood school. The choice on her education to get her the skills she needed was self-contained K=12. She did do a mainstream class each year K-4, and she was kept in a first grade placement for two years as she was strong enough to be in a regular reading group. For me school was all about educating and less about socialization etc. However, I do realize that giving kids as typical a childhood experience as possible with peers can also be an important consideration.

She never had or needed her own aide and was able to move through a 3-building campus in middle school years. In a scary high school setting, she also did fine going to come classes outside of her usual functional skills room. She was the strongest reader as a senior in a multicategorical language arts class. The teacher, however, was too lazy to do much with her. But you pick and choose your battles, and we got permission for her to go off campus to do some job training two days a week supported by a college student.

In high school she was a member of the service group Key Club, which her sisters had been president of and my husband's Kiwanis Club sponsors. Interestingly enough, it was the educated, high-achievers in high school that could look right through her or not acknowledge her at a Key Club end of year dinner. Whereas, it was often those viewed as "the dregs of society" who could have punched her lights out and were scary even in the day time who were so often nice to her or left her alone to safely navigate in high school. It is often these same now young adults who will say "Hi E" or I went to high school with her when we are out and about.

During high school years and in the summers, we have always connected her with a high school or college student to support her in volunteering and doing other community/social activities. This has worked well with her to do things typical of college-aged students. At the same time, she has always been active with area Special Olympics, though not a great athlete, with a strong therapeutic Parks and Recreation program as well as piano lessons.

In preparing for work after public education ended, we felt that looking at the skills sets of setting up/clearing and/or cleaning up in a dining room would offer her a set of marketable and flexible work skills. This was a skill set that would not involve the heavy slop and mop of working in say a fast food place nor the hot, steamy setting of a dishroom/kitchen setting. She could learn tasks that could be generalized to different settings in any community such as in a school cafeteria, adult daycare program setting, assisted living dining room or a busy college dining room. These are all settings in which she has trained in, volunteered and/or now works in. At the same time this area of employment gave her skills she could use in paid or unpaid work settings, which is really important if:

1- One should not be able to find paid employment, have one hours reduced or loses one job.
2- Works only part-time and would like to be able to volunteer in the community
3- Should relocate to a different areas with one's family

In fact, she did volunteer with support during the summers in post-high years at a new assisted living center, trained in the high school cafetria and then in two college dining rooms. She was hired to work in a college dining room in August 2003 and is in her 4th year and had worked up to 20 hours a week. With the economy, her hours have been reduced to 12 hours at this time, and just this week I reconnected with the assisted living center so she can go there two afternoons a week to help out after lunch. It is my hope that by the summer she could go there on her own to do the tasks, though right now for the spring she will be shadowed as I have another daughter expecting twins in a week that will need support out of the area at times.

E has some very good life skills and yet is weak in some, and I fully admit that I could have been more strident in teaching her. For example, she really cannot handle washing her hair all on her own or brushing it quite suitably for work. Yet, she lays out her clothes and all items for work a day or two before needed. She can handle a cell phone in a call on preset numbers, but will leave it on running it down. She can take paratransit to and from our own to her job. It is a work in progress.

As I listen to the inauguration, I am struck at the range of opportunities that have been afforded to my youngest daughter and the road yet ahead to be traveled and defined - much like that of our country at this pivotal moment of change. E voted for the last two presidents - ahead of time - and she followed the election as well as anyone with a limited understanding capacity. Now surprising to us, she does follow news of the economy, too, and clearly gets the connection of why putting out too many napkins in the basket to be wasted by college students can cost her employer money. And why tight budgets mean less hours for workers.

In writing this summary, I would just point out that E came of age when our economy was doing so well, and she had the best of services at no cost to us st least in preparing for a job. However, today federal and state budgets are all about cutting services and will be for some time. In Virginia, Maryland and Maine that I know of directly no more clients are even being enrolled for job support services. And, I would say in most states that there is limited, if any, new funding for spots in Adult Day Activity or Center-Based Work Settings (and probably little work at them right now, too.)

**Thus, it is incumbent upon parents of middle and high school students to:

1- Find out by age 14 just what are the options for adult services in your area.
2- Find out what the costs of a day of service is and what the funding streams, if any are.
3- Then, step back and take a hard, realistic look at your teenager in terms of both life skills and vocational skills and interests. AND talk to him/her about what she would like to be doing.
4- Then, bring this information to the table for the next high school IEP AND start asking just how public education between the years of ages 14-21 can prepare your son or daughter to work, to volunteer or to participate in a day activity program.
5- REMEMBER THESE SERVICES ARE FREE AND YOU WILL NEVER HAVE THIS OPPORTUNITY AGAIN ONCE PUBLIC EDUCATION ENDS.

At the present time, E is doing very well, and I do believe that over time we have done all that we can to get things in place for her for now and in the future. Interestingly, she may actually have some sleep apnea. For your information, a nurse practitioner actually told me there is a first, simple test to evaluate which we had done for free. It is to take a pulse oxygen reading by putting a gadget on one's finger, the monitor on one's chest and then tubing from one's nasal openings over the ears and attached to the monitor. From this first overnight reading, it seems that it will be good to go to see a neurologist for a possible sleep study. Now how that will go and if she would wear a CPAP thing is up for discussion, but we will pursue this spring. What brought it to m attention was the amount of sleep she always seems to need whether working or not.

Final Note: If any of you have a spouse near retirement age within 10 years say, then I would go to www.SSA.gov and read about the Disabled Adult Child Benefit when a parent retires, becomes disabled or dies. I have been told it really isn't that important a thing to stress, but the more I think about it, right now it is the middle and upper income families' only long-term equivalent to having an MR Medicaid Waiver:

1- Basically, if criteria are met, the DAC will receive a monthly Cash Benefit which is half of the amount that the parent will receive (but does not reduce the parent's benefit.) So if one is at the top of the scale n 2008, this would mean receiving for the parent $2280 per month and for the DAC $1140 per month. (This would assume that the other spouse would retire on their work record.)

2- This would be a TAX FREE benefit for the Disabled Adult Child (unless earnings are above $25,000 per year), and we are talking about a monthly Cash Benefit that is not Income Averaged as SSI is. THIS IS A LIFETIME BENEFIT.

3- Now a key to eligibility is that the son or daughter meets the working criteria of disability which currently is not being able to earn more than Substantial Gainful Activity of $980 per month gross (in 2009). So it is important in looking at work activities for a son or daughter to consider carefully whether one should ever go above this ceiling. While it may be great if someone could work full-time, you have to consider whether one with DS could sustain this level of working for a lifetime, whether one could lose the job in the future, what is the likelihood of decline and/or what is the chance of getting a Waiver Funding slot? I am told that SSA will look back to see if one ever worked enough not to be viewed as disabled or demonstrated even "the abilty" to.

4- This benefit is important to parents who upon retirement will most likely be living on less and with these volatile times it may even be hard to predict how much less than one planned for. At the same time, parents may well be starting to need and to pay for more services for a middle aged son or daughter and not have the money to do so. Why, because at this point it is only when a real crisis hits such that one does not want to think about it with the family members that one might be given serious consideration for a Medicaid Waiver funding slot. Even if it is just the option of looking at residential options for a young or middle aged adult, to have a guaranteed monthly income that could be almost double SSI's cash amount and certainly much more than retirement on the disabled person's limited work record is very important - while waiting for Waiver

Well such an exciting time to be an American at such an uncertain time for our country. It is my earnest hope that we can all work together to improve things for each of us.

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Re: "Normal" for Down Syndrome- please join me
Posted by: annikaleigh ()
Date: January 21, 2009 11:48AM

Hello Cheryl......I just wanted to say "hi" and to thank you for your post. I have put it in a file as I found it to be very informative. Thank you!!!!! Your Miss E sounds like a wonderful young woman who has had lots of great experiences.

Peace and love, Tara Marie [Momma to Katrina 19, Greta 17, Otto 12 and Emma Sage 7 [T21]

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Re: "Normal" for Down Syndrome- please join me
Posted by: LauraQ ()
Date: January 23, 2009 09:19AM

Chris,
This is a fabulous thread, thank you for starting it! You Rock!

I am on my way to work, so I don't have time to write alot, but I did want to share a blog post I wrote last night. I think it's relevant for this topic:Basketball Season

I can't wait to get home from work and read about all of our fabulous children later this evening.

Laura, Ryan (5/21/99 DS) Kelsey (7/31/01) & Mackenzie (5/9/05)



www.nowimamom.blogspot.com

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Who knows what is "normal"?
Posted by: nashtaters ()
Date: February 15, 2009 09:26PM

I will join in. Not sure what “normal” is , especially when Down syndrome is thrown into the equation. I will just chime in, on Nash’s 8th birthday on the 16th, what we have experienced with our son, our only child.

We were thrilled to become pregnant with Nash, as I was 39, and we had been trying for a few years and had several miscarriages before and after Nash. So “normal” for us is a strange concept. I have no idea what “normal” is for any child-is there such a thing? I do know on this 8th birthday, I want a redo of his birth knowing what I do now. I cried for days after learning Nash probably had Down syndrome, and then weeks, months after getting the official diagnosis. Although I had premonitions, which are set forth in my Chapter 8 in GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives I thank god every day we didn't have the triple screen and amnio offered to us. By CHOICE. We had Nash. We made the decision we wouldn't terminate and declined all testing other than an ultrasound. I shudder to think if we hadn't decided to forgo prenatal testing, as we would have been so uneducated about Down syndrome and no doubt pressured to terminate, we may not have our beloved son with us today. Tears form thinking about this.....so I move on.

Nothing can really prepare you for the reality of being told you are going to have a child that this society views as not “normal”. Because the reality of having a child with Down syndrome is nothing society teaches us either. We have our child, who happens to have Down syndrome. It’s a part of him/her, but there is so so much more. I think that is what I wanted others to understand from our chapter in GIFTS.

So after Nash was born, and we grieved, we rolled up our sleeves and went to work. Parenting, learning, researching, and later, advocating. And always loving. But what was Nash doing this entire time?

He was following a “typical” timeline, well, as “typical” and “normal” as I thought all kids did! He rolled over at 10 weeks, slept through the night at 8 weeks (yes, I woke him up to make sure he was alive!), ate rice cereal at 4 months, the rest at 6. Waved Bye at 12 months, walked at 17-18 months, ate and drank the “typical” stuff at the appropriate times. But he still hates vegetables, and is a very picky eater. Is that “normal”? Dunno.

He knew 350 plus signs at age 3, read his first sight word at age 15 months, I kid you not. We were doing Love and Learning and he saw the last word in book one “hug” and leaned over and hugged me. I used to do flash cards with him, and he knew his abc’s by sight at age 3. He was potty trained at age 4, through the night at age 7. Now he just disappears and a few minutes of quiet I check on him and yell, “Nash where are you” and sometimes the response is “In the bathroom! I need privacy”! (another thing we just learned…..some things are “private”!)

Now his milestones are fewer and farer between. (or maybe I am not putting those little notches in MY belt anymore?) But we still celebrate them with huge high-fives and big smiles. And we know that it’s not all about milestones, and how much he can accomplish compared to those that are “normal”.

He plays flag football with the guys from his class.

He gets 3 point shots in Upward Bound basketball with the other 7-8 year olds. Not all the time, but he did yesterday!

He is reading at first grade level in second grade. But Math, well, let’s say he’s more right brain like his mom.

He has many friends, but only about 3 that invite him over for overnights or play. Is that “normal”, who knows.

He is a wiz on the computer! He can hunt and peck and find games like there is no tomorrow. But we also have found we need to put parental control on our computer!

And he is loved. He is happy (but I will never be a “they are always happy” spokeperson!)

But I do see frustration kicking in that he can’t do things like he wants; writing is so difficult for him. We are using a keyboard for spelling words right now. He gets very frustrated with anything having to do with fine motor skills, and I am ready to request an evaluation as it looks to me like a motor planning issue. He hates art class.

He has a wicked sense of humor, and can repeat volumes of movie lines, and lyrics to songs. It really is amazing. Wish he could apply it to math facts!

But most importantly, he is happy. He loves his movies, playing outside with his dog, Seger, and the neighborhood kids. He can now play outside without me hovering, goes to the creek with the kids, and well, insert “normal” here…..I know many think going to the creek to play isn’t “normal”!

So that is that. Who knows what is “normal”? Not us!

Jan, mom to Nash 7

[mauzysmusings.blogspot.com]

_MG_3863[1]



Edited 1 time(s). Last edit at 02/16/2009 11:13AM by nashtaters.

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Re: "Normal" for Down Syndrome- please join me
Posted by: joanie5 ()
Date: October 18, 2009 09:11PM

Haven't posted in a while this is a great way to post again.

Thomas will be 7 on Tuesday. He is in kindergarten 50% of the time normal class 50% lifeskills.Told he works very hard when in both classes. He still is not talking a few words here and there is all. Working on the potty training just not there yet.Has sensory intergartion issues but is making progress all the time in this area.Thomas is one of my most loving chidren and brightens up each day of my life. Could not imagine Thomas being any differnt then the way he is. Getting a stubborn streck at school letting them know what he likes and doesnt like.
Joanie , Thomas

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Re: "Normal" for Down Syndrome- please join me
Posted by: Kareninchina ()
Date: October 25, 2009 07:26PM

Yippee! Finally got back on here after 4 years (it was blocked from where I was in Asia)
Anyway, Jonathan is 5, and, like Nana he can walk fast, and is almost running -- every once in a while he gets a little "lift off" but not really a good run. No jumping yet, unless he's holding our hands. Also, like Nana, he's drinking from a straw and feeding himself with his hands, but he tends to stuff everything into his mouth at once, so just have to put a few things down at a time. He's learning to feed himself with a spoon at this point. He's learned to open the refrigerator, and get out his box of drinkable yogart, and he'll sit down on the floor and drink that by himself.

He doesn't seem to recognize letters or colors, but he will occasionally say "apple" or "up" if he sees the word written down. He has a vocabulary of about 50 words and a few short sentences ("read a book" "watch a show" "I need to poop!" "go to the pool"). He has had absolutely no early intervention except what we've given him at home, because there isn't anything available here. He goes to regular kindergarten half a day (in a different language) and there he follows the routine well, but he doesn't understand a lot of what's going on, and then we try to teach him the rest of the day (he doesn't like to sit long and do worksheets and stuff). He does understand two languages and can speak about 10 words in the 2nd language, but he rarely follows direct commands.

He counts backwards (3,2,1) but not forward. He LOVES all people, and is quite comfortable especially with young people (because he's been surrounded by Asian university students his entire life). He loves getting on the bus and going places, and getting on the airplane and traveling (which we do a lot of). He loves swimming -- he can't quite swim on his own yet, but with his little floatie ring he makes a lot of progress around the pool. He loves reading books.

He drives us crazy by throwing everything on the floor -- anything that's on any surface (cushions on the couch, etc.) will eventually get tossed down.

He's about 80% potty trained -- he will pee and poop in the potty when we take him, and he will sometimes come tell us when he needs to poop, but he doesn't communicate his need to pee, so we just take him once an hour. He can't pull his pants up and down by himself, so he needs help with that.

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