Please help me help my son! - Cerebral Palsy Message Board

Ilovemyson · 05-25-2005, 09:52 AM

Hi everyone! Thank you for being so helpful and informative. This board has really opened my eyes.

I am a young mother, only 21. I have three children, a daughter and son born fullterm and another son who was born prematurely in 2003. My son had an interventricular hemmorage in the right side of his brain "grade IV." I was told that he had brain damage and that they could not predict the outcome at the time of his birth. When he was 6 months old he was evaluated by early intervention and they said that he was showing assymetrical movement but his development was on track. They said he didn't qualify for their services based on development but based on the diagnosis of the bleed they would work with him. We did physical therapy and speech for the next 5 months. When he was 11 months old he took his first steps and he would sing "tinka tinka tinka saaar" (twinkle twinkle little star) and they said they really didn't think he needed therapy anymore so I canceled the services. I was never really impressed with anything they did anyway...in fact I was totally unimpressed.

Now he is 20 months old. He did not actually start walking until 14 months and he wasn't really able to walk without falling alot until 17 months. He still has a noticable limp. He falls often and always seems to have a bruise on his forehead

He uses his left hand, but I can tell he gets so frustrated sometimes like if he wants to bend over and pick something up...he just can't quite do it. Or if he is trying to untie something or put blocks together...he just yells so frustrated. I try to treat him like an AB person because I feel like in the end, that's the way he will want to be treated...but maybe this isn't the right thing. I try to let him be independent, knowing he may fall but he'll be allright and knowing I have to let him fall and get back up, fall and get back up...but its so hard! When I ask my pediatrician about it, she just says, "oh he'll figure it out." or "oh I think he'll be just fine." That's easy for her to say!
I gave myself a mental time limit of two years. They say all preemies catch up by two years. So I said, if he's still limping then, I will take him back. Only I just learned we are moving out of the country in two months.

I want to help him. I would do anything to fix it. I want to trust that he is perfect and will always be perfect (regardless of whether he is 100% AB). I want to let him "work it out" and show me all he can do, overcoming his physical difficulties. I don't want him to be poked and prodded and labeled.

But then again, maybe I am doing him a huge diservice. I don't know what is right. I just love him. I just love him so much. I think he is so strong. He falls and he doesn't cry.

Does anyone, have any suggestions of things I can do at home to help him with his walking? Is there anything I can do to help him with his drooling? (he has always drooled a bit extra)

Please don't bash me for kicking early intervention to the curb. They were wasting our time. I know I may also be wasting time. I am really torn.

I am sorry this was so long.

Thank you.

NJenn · 05-25-2005, 11:43 AM

Your post hit home with me... my mom was 18 when she had me. She was very young and overwhelmed too. In your heart, I know you think you are doing what's right for you son. And I can hear the love that you have for him through your words. I can understand why you feel so torn. I won't argue what you've done for a minute, but I do want to give you a few things to think about.

Do you have an actual diagnosis of CP yet? If not, you need to get him diagnosed. Please don't get caught up in the labels. Having a diagnosis makes getting services possible. I suggest finding a new pediatrician, preferably a developmental pediatrician who can help you find more appropriate services for your son. Now is the time to do this. If he's walking at a young age, chances are he has much less functional involvement than some (by comparison, I didn't start walking until I was 5, and didn't start walking independently until I was 8). Early intervention could really be of help, if you find the right fit. Early intervention isn't just about PT, OT and ST, though, it's also a chance to socialize your child, and it's a chance for you to have questions answered, too!

Your little boy needs to grow up knowing that he's a little different than other kids, and that that's OK. Keeping it from him serves no purpose other than to confuse him and make him ashamed. For that reason, you can't quite raise him as an AB kid. It's ok to pick him up when he falls, and it's ok to help him get around so that he doesn't fall. He won't be any weaker because of that. And yes, CP kids are very strong. As a little kid, my parents would not even acknowledge me when I fell. If we were out in public, they would just keep walking. Their intent was to "make me strong," but all it did was make me sad. We pick up our AB kids all the time when they fall. I'm not sure why some people feel the need to let their disabled kids pick themselves up. I'm not saying that you do this, but just putting it out there as a thought.

Keep fighting for him, it will serve him well.

bsjones · 05-25-2005, 01:31 PM

Good post NJenn. By the way, what does"AB child" mean? Thanks.

JellyRJFan · 05-25-2005, 01:49 PM

AB= Able Bodied

and for future reference

PWD= Person with a disability
NT= Neurologically Typical

:-)

bsjones · 05-25-2005, 03:55 PM

Thanks JellyRJFan!