Hi Friends,
Jaime is now ten months old. She has just begun to sit alone (only for about 30 sec.) She isn't showing any desire to crawl but does a little rolling. She is able to get finger foods to her mouth through fist grasp. Late last spring I requested a PT eval. It was done (informally I found out later) and I was told they'd visit her in a couple of months. Now the PT took another job so we are without. My biggest concerns for Jaime now, are physical. She is very observant and interactive (5 sibs will do that for you). I feel like we've lost time when we could've been trying to build those skills! Up to now she's only seen her EI teacher once a month. Does this seem appropriate to you? It seems to me her teacher should be proacrive not waiting for delays to show up. No OT, PT, or ST! I'm SO frustrated. What kind/how much of EI program/therapies are your children receiving? PLEASE help!

Oh by the way...I forgot to say that I'm trying to get services in place by going outside the school system (since I no longer have confidence in them. ) I've had her doctor refer her to dev ped and phy evals. If I can't get the quality therapies through the school district I'm hoping to get a doctor order and get them privately. Jaime has MA & SSI and I think they will pay for the services.

Karen

Hi Karen -

It sounds to me like Jaime is doing very well. However, I know when people tell me that about my son, Russell, I still feel that he should be further along than he is. I'm very proud of what he has accomplished but it seems like it takes so-o-o long to really master one thing.

Russell is 11 months old and receives PT once a week (30 minutes)and his Early Intervention Specialist (EIS)comes once a week (1 hour). The EIS has been very proactive and helpful in suggesting the areas that need to be focused on at that particular time. In fact, she is in the process of putting in a request for him to be evaluated by a Speech Therapist because she feels he needs some help. She said that it is not necessarily a "given" that he would receive ST or OT even though we know these will be areas where he will need help! These are services through our state Early Intervention program. If I were you I would definitely complain and be the "squeeky wheel". Jaime deserves the best and your taxes are paying for these services.

One other side note - you've probably already been doing this but just in case, I found that the book "Gross Motor Skills in Children with DS" was very helpful for me even before we started PT. I felt it at least gave me something to work with and a way to chart his progress.

Hope this has been somewhat helpful. God bless you in your efforts.

Hunter gets EI twice a week for 1 hr, speech once for 30 min, OT once for 30 min and PT once for 45 min. He has just turned 17 months. I would also be upset if he were not getting therapy. Yes they develop at their own rate but the therapy really does help.

You did not mention what state you live in, what I've found is that it really depends on your state to how all the services are funded/administered. Where I live, Hunter gets services from Childrens Home which can be found in the yellow pages under social service organizations. The schools service does not pick up till age three.

Dena

Preston started recieving therapy when he was just 5 months old. His 1st therapy was PT. which was once a week for 1 hour. At 11 months we started OT once a week for 1 hour. At 15 months we started Speech therapy once a week for 1 hour and also increased PT to 2 x per week for an hour each. By 16 months , right when they new he was ready to start walking we increased PT to 3 x per week for 1 hour each. Once we got him on his feet, we decreased to 2 x per week, then added a 2nd speech therapy. Now at 2 1/2 Preston recieves PT 1 x per week, OT 1 x per week, & Speech 2 x per week. He does excellent! His therapist have done well with him. It makes me feel so proud when Therapist say wow Preston accomplished this goal early or when they show me the charts of his progress. He has moved along so quickly.
I feel therapy plays a very important role. It's great that Jaime can do so well with so little therapy. I would definately push for more therapy. I was a very squeaky wheel, and they listened to me. I couldn't have asked for better therapist. At 2 1/2 there's not a thing Preston can't do. I think with added therapy , you'll see great improvements. Best of luck to you!!!

This doesnt have anything to do with the posted note or replies, but this was the only subject that i could think of to pu this under. I am 16 years old, and last year i worked at a center for handicap children, i worked with one child in particular who had down syndrome. He touched me immediately, i had so much fun with him, he was so loving and giving, and he was just an awesome all around kid. working there showed me that i would really like to get into that kind of work. So i would now like to go to collge to major in special ed. i was wondering if anyone knew any good places to go to maybe study any of this or if any one else has an interest, i know im only 16 but i love this! i dont get to see my little boy any more i had to stop working there, but i plan on going back visiting very very soon!

Although I can't think of any right off hand. I'll ask our therapists and service coordinator if they have any ideas of schools with good special education study programs. I just wanted to say that I think it's great that you have such a wonderful attitude and desire to help kids with special needs achieve their goals. We need more teachers who are so motivated! Good Luck!

KC, Wesley received theraphy at least every other week from all areas(Speach, OT, PT, etc...). Sounds to me someone has dropped the ball. I'd look into it.

BABYBLUE715, I'd let you come work with Wesley anytime if you were closer to Alabama. Check out your local colleges education departments. They can tell you exactly where to go. There is pleanty of jobs available for caring individuals like you. Good Luck!




Steven

I think that I should be asking my questions in this area of the site...sorry if I am in the wrong spot. Hopefully someone can answer part of my questions. I am a 23 year old Child Development major and the mother of eight month old Delaney. I will eventually go into special ed. I am currently researching Down syndrome for a paper I am writing. While I am quite familiar with the scientific aspects of Down syndrome, I know very little about what actually happens as far as education and early intervention. I am interested to find out how early the learning begins, I know that PT starts quite young, but at what age and how often etc... What sort of support systems are our there to help with the education of the children? I would also like to know how the school systems plan to work with you guys and your children. Are they helpful? Are they not so helpful? I have heard differing information. I guess I would like to start off with these questions. Please feel free to elaborate as much or as little as you wish. Thank you very much for your time and information. K