slow progress

Carol-lee - posted on 09/18/2010 ( 1 mom has responded )

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Hi, My boy Jack has a complete non repierable AVSD. Jack was 4 weeks prem and spent the first 12 months in hospital. He has had heart surgery with more to come in the future, he almost died after contracting golden staf. His hospital stay was torture for him. Jack is now 3 1/2 yrs old we work closely with therapists, he swims goes to day care and early intervention classes. But I feel there is no progress. I know he has health issues that stop him from growing and make him weak but mentally I dont see much improvement, though I give it everything Ive got he only will use a few signs, he cant walk or talk at all. he wont hold his own bottle though that seems to be a choice and he has bad gag reflex so he only eats soft food. he has never put anything in his mouth other then his thumb. He knows everything im saying but is limited in wanting to communicate, he loves the wiggles goes crazy for music and is very affectionate. I just see other kids with Downs that are so far ahead. I know i should not compare. But I cant help it.

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Rita - posted on 10/01/2010

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Hi Carol-lee. I'm not sure that I'm the person for you, but your story has touched my heart. My son Erik is 8 and in grade 3. He has no other real problems except for the delays associated with DS. I guess I feel that he is on the higher end of the spectrum of learning delays. We are probably in the group that give you the most grief. I usually tell people to keep from comparing if you can. Just enjoy the successes as they come along, which they usually do, just not at the usual times.
I guess I can empathise with you on a certain level, Erik is still just starting to speak in sentences, and is schedule trained for the toilet (meaning if I don't tell him to go...he usually goes in his pants). It's easy to say "don't compare", not easy to do though! I still compare at times, but all that does is make me be harder on myself. We moms of children with special needs have enough on our plate without being hard on ourselves. So I try to keep things in perspective. I look at how far he has come and am filled with hope for how far he will go!
I hope that you can hang in there and enjoy the time you have with Jack. Be proud that he is using signs to communicate and hope that he will find them so helpful that he will want to use more (Erik knew 125 signs before he started to drop them for speaking). Enjoy the music with him and take all the love that he gives. Really, life is not a competition, it's all about doing the best that each of us can. So far, Jack may be doing the best that he can, and with your support and patience he will continue to do that!
I don't want to be preachy and to sound like I know what you are going through, because it sounds like I have it a lot easier than you. I just wanted to give you a hug and hope that it will help you to hang in there. Every so often, I'm sure Jack will show you another way that he is SO SPECIAL!
Take care,
Rita

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