Ilovemyson
05-25-2005, 12:52 PM
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.
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.
Sponsor
NJenn
05-25-2005, 02:43 PM
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.
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, 04:31 PM
Good post NJenn. By the way, what does"AB child" mean? Thanks.
JellyRJFan
05-25-2005, 04:49 PM
AB= Able Bodied
and for future reference
PWD= Person with a disability
NT= Neurologically Typical
:-)
and for future reference
PWD= Person with a disability
NT= Neurologically Typical
:-)
bsjones
05-25-2005, 06:55 PM
Thanks JellyRJFan!
Ilovemyson
05-25-2005, 11:21 PM
Thank you NJENN. I appreciate your perspective a great deal. I am going to do some investigating into availible services in North Africa (where we are moving) I don't know what there will be. I can't help but think alot of the therapys they used for him in the past and from what I have seen they are pretty straightforward. If I can't find a good therapist there well I am not opposed to becoming an expert in physical therapy myself (at least as far as my son's disability is concerned).
As for a diagnosis. No, he has not been diagnosed with CP. I was told that there was a probability that a neurologist would not diagnose him with CP at this point because he has so much functionality that his disability is quite subtle. They said that the neuro would want an MRI and then base the dx on the findings. I was really frustrated by this approach because my son already had an MRI at birth that showed he did have brain damage and I find repeating these tests to be a) expensive b) traumatic c) unnecesary. We were being seen by a neurosurgeon who pronounced my son "normal" at the age of 7 months...mind you my son was not sitting up on his own at the time nor was he crawling.
Its just so frustrating. I want a doctor who will take my son's problems seriously and look at them for more than 30 seconds (or even 30 minutes) but at the same time I do not want a doctor to scare the pants off me!
Early intervention kept mis-diagnosing him to the point where it was just ridiculous. Example: during the 30 min "evaluation" that they did, they watched him drinking a bottle. At the end, she let me know that he had "poor suction" because milk was escaping from the left side of his mouth. Now, this may have been true of this moment. But I had been feeding the child every single meal for 6 months...and I think if this were an actual issue he had, I might have noticed!!! As it happened I NEVER saw him ever drool out of the left side of his mouth from a bottle again (and you can bet I watched him like a hawk ever after). But no matter how hard I tried to communicate the problems that I noticed myself...they would just ignore it....and focus on things that seemed totally bogus to me. Then when he wouldn't repeat the "mal-function" at the next session they would pronounce the issue cured and move on to another bogus thing.
Excuse me while I growl in frustration: RRRRRRRRRRRAAAAAAAAAAHHHHHHHHH!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!
As for a diagnosis. No, he has not been diagnosed with CP. I was told that there was a probability that a neurologist would not diagnose him with CP at this point because he has so much functionality that his disability is quite subtle. They said that the neuro would want an MRI and then base the dx on the findings. I was really frustrated by this approach because my son already had an MRI at birth that showed he did have brain damage and I find repeating these tests to be a) expensive b) traumatic c) unnecesary. We were being seen by a neurosurgeon who pronounced my son "normal" at the age of 7 months...mind you my son was not sitting up on his own at the time nor was he crawling.
Its just so frustrating. I want a doctor who will take my son's problems seriously and look at them for more than 30 seconds (or even 30 minutes) but at the same time I do not want a doctor to scare the pants off me!
Early intervention kept mis-diagnosing him to the point where it was just ridiculous. Example: during the 30 min "evaluation" that they did, they watched him drinking a bottle. At the end, she let me know that he had "poor suction" because milk was escaping from the left side of his mouth. Now, this may have been true of this moment. But I had been feeding the child every single meal for 6 months...and I think if this were an actual issue he had, I might have noticed!!! As it happened I NEVER saw him ever drool out of the left side of his mouth from a bottle again (and you can bet I watched him like a hawk ever after). But no matter how hard I tried to communicate the problems that I noticed myself...they would just ignore it....and focus on things that seemed totally bogus to me. Then when he wouldn't repeat the "mal-function" at the next session they would pronounce the issue cured and move on to another bogus thing.
Excuse me while I growl in frustration: RRRRRRRRRRRAAAAAAAAAAHHHHHHHHH!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!
Zagreus
05-27-2005, 09:19 AM
20 months is not too young for a diagnosis for a child with subtle symptoms. My son's symptoms are also subtle and he was diagnosed at 15 months. Get a referral to a pediatric neurologist and then after that visit see if you can get a prescription for physical therapy.
Newtocp
05-27-2005, 02:10 PM
Im going to offer another prespective please don't personally attack me as we are all entitled to our opinions.
I have a three year old his cp is noticable but possibly won't be in a few years. THe drs and I have opted not to dx at this point. First of all becasue it doesn't effect the amount of services he can get and secondly there are ramifications to getting a dx as well. that dx is for life. I have read too many sad stories about the difficulties of getting health insurance with the dx if its not a group health care after the children wiht cp turn 19. WHile I acknowledge my son's disability I see no reason to make it offical. At one point I was going to try and get it offical and the pt working with him said 'please don't' He already has to work twice as hard to do things but he will have the added difficulty of overcoming steryotypes from teachers about intellect. Everyone is so gung ho about getting these kids labeled but I just don't see the point in this day and age with 'no child left behind' the urgency for a dx is just not that important. jmho.
Steph
I have a three year old his cp is noticable but possibly won't be in a few years. THe drs and I have opted not to dx at this point. First of all becasue it doesn't effect the amount of services he can get and secondly there are ramifications to getting a dx as well. that dx is for life. I have read too many sad stories about the difficulties of getting health insurance with the dx if its not a group health care after the children wiht cp turn 19. WHile I acknowledge my son's disability I see no reason to make it offical. At one point I was going to try and get it offical and the pt working with him said 'please don't' He already has to work twice as hard to do things but he will have the added difficulty of overcoming steryotypes from teachers about intellect. Everyone is so gung ho about getting these kids labeled but I just don't see the point in this day and age with 'no child left behind' the urgency for a dx is just not that important. jmho.
Steph
NJenn
05-27-2005, 02:31 PM
Double post, see below. Sorry.
NJenn
05-27-2005, 02:33 PM
The original poster is in Germany, which has a national health care system. Therefore, your worries about health insurance, Newtocp, are not relevant for her. I do hope your take on "not making it official" does not extend to teaching your child that he is different. If you keep this from him, you would be doing him a serious emotional disservice. I know a lot of adults with CP. I am an adult with CP. One thing I can tell you for certain, is that CP does not dissapear as kids get older, no matter how "unnoticable" it is. It has the capacity to improve, but it will not disappear. I still don't understand why healthcare providers tell parents this--it just sets you guys up for disapointment and heartache.
I also know a few adults with "barely noticable" CP similar to your son's. Their diagnoses were kept from them, or minimized, and they grew up wondering what was wrong with with them. Furthermore, there are many adults on this board who will attest to the fact that, while CP may improve a bit in children, we tend to age faster and experience more wear and tear as adults. Therefore, it is as if CP gets worse as we age. What I'm trying to say is, please don't minimize your child's condition. You are setting him up for more problems if you do.
Just my 2 cents, as someone who has lived with CP for 26 years.
I also know a few adults with "barely noticable" CP similar to your son's. Their diagnoses were kept from them, or minimized, and they grew up wondering what was wrong with with them. Furthermore, there are many adults on this board who will attest to the fact that, while CP may improve a bit in children, we tend to age faster and experience more wear and tear as adults. Therefore, it is as if CP gets worse as we age. What I'm trying to say is, please don't minimize your child's condition. You are setting him up for more problems if you do.
Just my 2 cents, as someone who has lived with CP for 26 years.
Newtocp
05-27-2005, 09:52 PM
Like I said in my first post I completely acknowledge that he has sometype of movement disorder and He is special needs preschool to address his 'struggle' areas but He gets all of that without an offical dx. My son is hypotonic and mildly ataxic(this form continues to improve until age 8 or 9) rather than hypertonic which makes his situation from most other people with cp completely different from my experience but we in no way tend to hide that things are harder for him. I just get irritated with the need to label. yes, no kid 'grows out' of cp, will my son be hard to a distinguish..... probably so I don't see the need for it to be a on a trail that will follow him the rest of his life when we can acknowledge and address that without it and possibly protect him from the hassles of getting health care later. Also on our hypotonia support board we have people from across the world and you don't have to have a dx even in universal health cares systems.