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Thursday, March 27, 2008

Q and A

*Updated with new questions...

I had a few questions from this post and I've got a few minutes to actually answer them now!

1. I'm wondering how much speech therapy Kayla had & when she started talking a lot. Kayla started receiving therapy through ECI when she was around 4-6 wks old (I don't remember exactly when it started). She received PT once a wk and ST every other week (OT started at 5 months for once a week.) She was in ECI until she turned 3 and "graduated." She receives either 30, or 60, minutes of ST in preschool now. (Isn't that terrible that I can't even remember what is in her IEP!) It isn't one-on-one though, it's in a small group setting with a few other kids from her class.

She didn't really start saying many words until after she turned two. Then she slowly started with naming objects and once in awhile would use a 2-word sentence (hi daddy was the first one.) The closer she got to her 3rd birthday the more words she seemed to pick up. At 3 she really started to have a verbal explosion.

I'm always surprised when people comment on her speech though; I don't think it's always that clear. She doesn't pronounce a lot of her words correctly, even though she can make the letter sound. For instance - she can say perfectly clear the word "FOUR" with the "F" sound, but add a "K" to the end for "FORK" and it comes out "sork" - no matter how many times I've worked on that with her. She can pronounce the "M" in "Mommy, me mine" but she says "nonekey" (monkey) and "nulk" (milk). Cup is pup, apple is papple unless I say "how do you say it?" and she'll say "aaahhpull." Same with zeeza (how do you say it?) "peeeezah!" So some words she needs a reminder to stop and think about how she's pronouncing it and then she'll say it correctly.

2. Do most kids with Down Syndrome need speech therapy? I'm not an expert by any means, but I do believe the answer is yes...of course the key word is "most" as I'm sure someone will say "that's not true of all kids with Down syndrome!" LOL And there are parents that opt to not put their child in ECI and do their own therapies at home. Again, most, kids with Down syndrome have hypotonia which is low-muscle tone. This also affects oral motor skills, so speech and oral motor therapy help with strengthening the facial muscles/jaw to help with speech (and any eating problems).

3. My question for you is do some children with Down syndrome have brain development delays? from my mom his lt side of his brain has slowed in developing. I honestly don't know the answer to this one. I know there are cognitive delays, but I'm not sure if there are delays in the brain developing or not. It isn't something I've come across before. I haven't seen any research, or information, on part of the brain slowing in developing - you're right in that there might be something else also going on with your nephew. (Sorry I couldn't provide any more information!)

4. What are your future plans for Kayla's education? Will you always be able to keep her in the public school system (I hope so) and, if so, will she be assigned an aide to help her as she gets older? I imagine that Kayla will always be in the public school system, but I don't know yet whether she'll be completely mainstreamed or not. Our hope, and goal, is for her to be fully included in the regular ed classes, but I also want to be realistic and keep an open mind. I don't plan on limiting her to what she can and can't do - I'd rather her show us what she is capable of and give her all the opportunities to succeed. I have heard from parents who have older children say how wonderful they think full inclusion is and they were gung-ho and adamant about it when their child first started school. They were determined that their child would remain fully inclusive, but as their child got older they recognized that full inclusion just wasn't working. They still went to the public school, but took some classes in special ed and other classes with their typical classmates. After reading about those experiences I realize we can only do what is best for Kayla at each grade level, if it means that she'll need special ed classes for some classes, then that is ok. I also realize she has a right to be in regular ed classes with modifications as well. So I guess we'll cross that bridge when we get to it! I just want to provide her with the best learning environment to help her be successful.

As for an aide I guess that is another wait and see approach. Right now Kayla is in a DD (developmental delay) public preschool. The program has "peer models" so there are typically-developing kids in the class too. There are 2 classroom aides, but they aren't one-on-one, so she doesn't have one specifically assigned to her. I was told that she'll go right to a regular, inclusive, Kindergarten in the fall (at the same public school). We haven't talked about aides, but I think the Kindergarten classes also have classroom aides. As she gets older, if it becomes apparent that she needs a one-on-one aide for whatever reason, I won't be afraid to request that in her IEP, but as of right now I don't foresee her needing one.

5. Is the average life expectancy the same for someone with DS? What can be done to extend it? From what I can remember reading, the average life expectancy is 50-60 yrs old, so shorter than the typical population, but so much more than what it used to be! Years ago I think the life expectancy was under 10 years old...that was mainly because of heart problems and lack of medical technology. Now doctors can perform life-saving surgeries which greatly increases the life expectancy. I don't really know what can be done to extend the life expectancy; more research I would imagine. I do think it is important for parents to follow the recommended medical guidelines for preventative care...ie...yearly blood work for thyroid, seeing a cardiologist etc.

6. I'm wondering did your family use sign language? How big is Kayla size wise compared to other kids her age? Does she have hearing or ENT problems? Yes we used sign language...specifically the Signing Time DVDs that are on my sidebar. We loved those and they really helped us bridge that gap of communication.

Kayla is actually pretty small compared to other 4 year olds...I think she's even small for other 4 yr olds with Down syndrome! She is only 34 lbs (haven't measured her height lately, but I know she's small.) When she was 5 months old (after a weight check showed she was the same weight as when she was 4 months old) the NP told me, "well she may just be burning her calories faster than you can get them in her!" She's always been really active and I imagine she must have a high metabolism; that and the fact that she really doesn't eat much - especially for dinner (she'll only eat a couple bites and that is it.)

She does have a problem with fluid in her ears (although she's only had 1 ear infection that we know of). The fluid just isn't draining so she currently has her 4th set of ear tubes in.

Great questions! Thanks for asking and giving me an opportunity to share a little bit more :)

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Karen said...

That was a wonderful Q&A. I esp. liked reading about Kayla's education plans. We're currently trying to determine what is best for Micah and it's interesting to see that you have pretty much the same views.

Melissa said...

awww. you are such a wonderful mommy :)

Sunny said...

I just found your blog. I'm also a T21 mommy. My little girl is 18 months. Thanks for such a great post.

schatzi said...

Thanks for sharing and answering all those questions...your answers to those questions are so similar to our daughter who has Sotos Syndrome...You are a great mom.



Catch said...

What great questions and answers Michelle! You are such a wonderful Mother! I was looking at the pics of Lucas and Kayla....they are so precious! I esp liked the pic of him smiling!!! Such a pleasant baby! BTW..I posted!

Killlashandra said...

Those are wonderful answers and very informative. You and Lee and Gabe have a lot of great information about development on both your pages. It's really great to read about. She might be small but she'll always be a cutie and she has the best smile. :)

K.T. is Mommatude said...

Great job!!!

Kendall is small for age as well,smaller than most children with Down Syndrome at the same age too,in fact.LOL.She is 55lbs and is 11 years old.She didnt change weight for about 3 years and we are so happy that she finally hit the 4 ft tall mark!!!!

Tracey said...

Great Q&A, Michelle.

Tammy said...

That was a fascinating Q&A, Michelle!

I am off for Disneyland tomorrow...see you when we get back (with lots of pics!)


Mama Mia said...

Thanks for answering our questions! Very informative answers. Kayla may be small, but she's too cute!

Cate said...

That was a great post. I always like to hear your perspective on DS stuff. You have a very reassuring way of putting things.

Stephanie - A Place For Love said...

Thank you for answering those and giving us a more in depth look into your life and how you deal with everything. Kayla is SURE cute and you should be very proud. You have a gorgeous little girl.

Tanya said...

Thanks for answering all of those questions! Very informative - especially for those of us who aren't knowledgeable with DS.

Shelley said...

Great Q and A Michelle. Iread them all with interest. Love th pics of Lucas too - he looks so gorgeous!

Paulette said...

Hey Michelle,
I loved this post. I am very involved with my best friend's daughter Cayti who is has downs syndrome. I also know 3 other kids very well who have downs syndrome. Cayti goes to a school called Green Oaks where we live. It is a school for only downs syndrome kids. They have 150 kids in this school and it is amazing what they do with the kids. There is no age limit and once they reach 18 they fully incorporate home living classes and teach the kids to go out and grocery shop, cook, do laundry, sew. It is so amazing to volunteer there. They teach them so many great things which is accentuated in the home, so they can be productive in society one day. A couple of the 20 year olds there want apartments and we can see that happening!
Wanted to tell you Lucas is adorable and so is precious Kayla with him!!

Chris said...

Hi! Thanks for a very informative post.

Tara said...

Thank you so much for sharing so much information. I learn so much thru your blog.

chelle said...

So awesome that you share so much!

jotcr2 said...

Thanks. Its always interesting for me to know what other parents are doing therapy wise.

Julia said...

What a beautiful blog! Thank you for finding us.

So much sounded so familiar. Abbie is 5 and weighs only 35 pounds! Abbie also speaks but really only uses the vowels in each word. We work hard on signing but so many other people don't sign, so we just started with an AAC device, the SpringBoard Plus. She lOVES it!

Overwhelmed! said...

Thanks for your answers, Michelle. I really enjoyed reading each response. You're such a good teacher. :)