Reasurance from a mom whos seen alot of what you are all going through.

Michelle - posted on 04/14/2009 ( 1 mom has responded )




Jimmy is my oldest, he's now 15 years old, you can see his pics on my profile. He was born when I was 25 so I knew my age had nothing to do with it. They diagnosed him with poor muscle tone at birth and basicly told me not to worry, that a developmental specialist would keep tabs on him. He was an easy baby, not being able to do much he slept alot. This scared me though, having taken care of more than a few neices and nephews I knew something was wrong. Never a diagnosis. He was able to eat when propped up at 5 months, but still could barely hold his head up. He would cry when I would try to stand him on my lap. A jolly jumper was torture, he screamed at many noises, he screamed at the touch of grass and sand. Everything was a guessing game for me it was scarey. One of my biggest comforts was an older man for his pediatrition. He always re-assured me that although he was delayed he was healthy. As long as I knew it wasn't life threatening I could deal with it. I started services for him when he was only 6 months old, teachers, PT, OT, speech, I did everything I could. I learned during his therapy how to continue to do things with him on my own, worked with him all the time. I taught him never to say "I can't." Now, at 15 years old, he still is a bit slow, but he started walking with a walker around the age of 5, He was potty trained at 7, got rid of his wheelchair completely around 5 years ago. Doesn't need the walker anymore, only wears orthotics to keep his ankles from turning. His speech therapy has just been cancelled, he talks a bit slow, can understnd him most of the time, and when he knows he said something wrong he corrects himself. He's not a good reader because of his poor tracking ability with his eyes, but rarely do they cross or wander like they used to. He can read enough to get by though. He's of average intelligence otherwise, not much if any mental retardation. Best of all he's happy, healthy, 6 foot tall now, acts like a typical teen, and is my pride and joy! I still to this day have never heard a doctor tell me, he has this or that, only maybe some cerebral palsy, but no muscle tone never was spastic, maybe autism, but no because he never minded cuddleing and expressed emotions appropriately. I, to be honest lied many times to get him help. I constantly did research, saw which disorders matched his delays the most (most times it was Athetiod Cerebral Palsy, in which the muscles are low tone instead of high tone, only the doctors knew that it wasn't because it usually becomes spastic after the age of two) Now I see that his biggest problem is defianately S.P.D., maybe a severe form that effects the nerves in his muscles that make them know how taught to be. I'm not sure, never will be, but I'm content to know, hes done better than anyone expected, will live a normal life span, and is smart enough to get by. He may need help with things for the rest of his life, but he's so darn lovable it shouldn't be hard to get people to help him! Try not to focus on the diagnosis, I know it's not easy, answers would help, but concentrate on your child not what the docs tell you, you know your child better than anyone, trust your instincts, make yourself heard, learn all you can, being an advocate is more important than anything else. Anyone with any questions, feel free to contact me, my yahoo is mcoon12369, for e-mail or IM.


Rabaab - posted on 05/08/2009




hi Michelle, thanks for this.. It has really helped. My daughter has some developement delays and i just feel i do not know what to do anymore..

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