"Can't" is not in our dictionary, don't let it be in yours!
Don't fall into the trap, the one that tells you your child is defined by their disability, when medical professionals talk to you about their "prognosis" they are talking about the predicted outcome of an illness, disease, or disability. Take what they say with a gain of salt, they never know with complete certainty how something will and will not affect your child, each child's progression is unique, though you may be able to draw parallels between others with the same condition there are many things that effect the outcome which is why two people with the same disability may be at two different levels throughout their development.
My son for instance has severe PVL, caused my medical malpractice during his delivery, and developed Cerebral Palsy. The day we found out the extend of his brain damage I had a neurologist come into the room to explain what his level of damage meant. I was told "I have never seen PVL this bad in a child who has survived the NICU, you have to be prepared for what is going to come. I'm sorry but with this amount of damage the outlook isn't that great, severe quad spastic cerebral palsy is the most likely outcome. It is unlikely he will talk, crawl, walk, he has a high chance of being deaf and having vision problems, and less than 1% have normal intelligence. I'm sorry." He was VERY, VERY WRONG! By the time we found out how severe his damage was he was already doing the commando crawl, talking, pull himself to a stand, etc. the neurologist was shocked that he was talking about Nicky, he thought he was talking about his brother who was sleeping hidden in his stroller. He was so shocked in fact that he walked out of the room to verify he had the right child and report, he was not the child the scans implied he'd be. -Which is why we are thankful his damage was hidden from us for so long, if he would have had his level of damage and prognosis on file he would not have qualified for the INTENSE therapy he had gotten since shortly after his discharge. Sadly though even with his level of progress once it was on file, because with his level of damage his was "unlikely to progress", his level of support was being drastically cut which left us with only one option...to pay for it out of pocket!
Years later when he was diagnosed with epilepsy we were greeted by the same shock, they were expecting a severely disabled child, they expected him to be "infant like" heck even the guy who did his EEG expected the same. When his EEG was over and done with we were told he was having short seizures every few minutes, both awake and asleep, when they realized how well he has progressed the treatment plan went from simply trying to minimize them to trying to eliminate them. Once again he did not fit into the mold they had been taught he'd fit into, he was thriving, and even though he did have some issues that were caused by the seizures they were, for the most part, overcome shortly after he started treatment.
We don't know "can't", he does not live in this house, and is not welcome here. In fact "won't" isn't welcome either, you will never know what your child is capable of doing unless he is given every chance to try. Yes there may be things he can't do and won't do but the key is to open every door, work towards small goals, and give them a chance. If your child can't walk, start with the basics, just like every other child they need foundation skills and even though they'll come naturally to some children, other they won't. Some of these skills they will still do poorly at, rolling was not a strong skill Nicky had and sitting properly unsupported isn't either, but that doesn't mean they wont be able to progress to the next step and develop the harder skills. We've been told he may never walk independently but we never tell him that and he is determined to do it, even tonight he grabbed the bottom piece to a lego table and held onto it while he was hunched over and walked a good 3 feet with it. He's grabbed onto the rail going upstairs and hoisted himself up and used it to try to walk up the stairs, he made it up two by himself. He also loves gymnastics, he took it in school, now he's determined to do a headstand. He doesn't even come close to doing it properly and quite frankly it makes me cringe, his version of the tripod is to put the side of his face on the ground instead of his head, he then slowly moves one leg at a time until his knees rest on his elbows, then he ever so slowly tries to stick his legs in the air. He has done this almost daily and you can see the determination in his eyes, so far he's got his knees part way up his chest, that's a few inches further than what he was able to do over the summer. Slowly he's doing it, slowly he's progressing, and I know that one day he will succeed. All the skills you'd think he would need to be able to do this he either hasn't developed or does poorly with, but that doesn't stop him from trying, and I won't either.
Give them every opportunity to try new skills out, help them, encourage them, even if they don't do it right or it looks too hard let them have a go. Eventually they'll expand what they want to learn and will try other things, but if you let their diagnoses hold them down and allow it to tell you what they can and cannot do, you may never know what they are truly capable of doing. Don't let their disability prevent you from opening the door to the possibility that they can do it or they may never even try. When they get older encourage them to become more active, it doesn't matter what the activity is, just find something they like and give them the opportunity to learn. Even if they can't do it on their own doesn't mean they can't do it at all, you can get special bikes with seating systems attached to them so you can take them for bike rides. There is ski equipment that allows them to sit while you ski around with them, you can get a sledge with or without a handle bar so either they can skate on their own or you can skate around with them. Don't be afraid of them getting a bump or bruise, if your child wasn't disabled it'd be a normal part of childhood, allow them to try even if there is a risk. You wouldn't stop a "normal" child from learning to ride a bike or skating just because they may get hurt so don't prevent your child from having an opportunity to try new things either.
Nicky has taken up wheelchair basketball, he is the youngest person on the team here, he plays with teens and adults alike and they don't know the word can't either. They don't even allow him to get away with slacking off, he is part of the team and he's expected to give it his all just like everyone else. He races back and forth up and down the court on his own, he's passed the ball and passes it back, he is not left out and his disability is ignored. There is no "he can't do it", or "this is too hard for him", and definitely no "take it easy on him", he choose to play and begs to go back every week, he loves that they allow him to play without babying him or doing everything for him. Though there are times he gets lazy and wishes someone would push him and do some of the work for him, but he's 6 and I wouldn't expect any less, it's normal for people to give up or get lazy but he has a whole team cheering him on and reminding him he can do it and he will do it. Yes it puts me on edge and I'm scared he may get hurt someday but if he wasn't disabled there would still be risks, when he asks to try or do things I do weigh the risks but I also ask myself "If his brother asked to play, would I allow him to?". For this activity it's a yes, and in fact even his younger brother it was a yes, he may not have played because it was too risky for a 4yr old to be out playing with adults but he stayed on the sidelines and learned to pass the ball and get around in the wheelchair (which he's a pro at) and a few weeks later, after they were done playing, they brought all our boys out onto the court and played a child friendly game with them. By the way my boys' won =)
I'm not saying your child will overcome all their obstacles or that they will be able to do some of the things my son does. I am saying to make sure you give them every chance possible to expand their skills and learn new things. "Disabled" doesn't mean "unable" it just means they do things differently and some times need to find their own way to do things and just because they do something differently doesn't mean it wrong or they shouldn't do it, it means they have adapted and removed the road block that says "You can't do this".
My son for instance has severe PVL, caused my medical malpractice during his delivery, and developed Cerebral Palsy. The day we found out the extend of his brain damage I had a neurologist come into the room to explain what his level of damage meant. I was told "I have never seen PVL this bad in a child who has survived the NICU, you have to be prepared for what is going to come. I'm sorry but with this amount of damage the outlook isn't that great, severe quad spastic cerebral palsy is the most likely outcome. It is unlikely he will talk, crawl, walk, he has a high chance of being deaf and having vision problems, and less than 1% have normal intelligence. I'm sorry." He was VERY, VERY WRONG! By the time we found out how severe his damage was he was already doing the commando crawl, talking, pull himself to a stand, etc. the neurologist was shocked that he was talking about Nicky, he thought he was talking about his brother who was sleeping hidden in his stroller. He was so shocked in fact that he walked out of the room to verify he had the right child and report, he was not the child the scans implied he'd be. -Which is why we are thankful his damage was hidden from us for so long, if he would have had his level of damage and prognosis on file he would not have qualified for the INTENSE therapy he had gotten since shortly after his discharge. Sadly though even with his level of progress once it was on file, because with his level of damage his was "unlikely to progress", his level of support was being drastically cut which left us with only one option...to pay for it out of pocket!
Years later when he was diagnosed with epilepsy we were greeted by the same shock, they were expecting a severely disabled child, they expected him to be "infant like" heck even the guy who did his EEG expected the same. When his EEG was over and done with we were told he was having short seizures every few minutes, both awake and asleep, when they realized how well he has progressed the treatment plan went from simply trying to minimize them to trying to eliminate them. Once again he did not fit into the mold they had been taught he'd fit into, he was thriving, and even though he did have some issues that were caused by the seizures they were, for the most part, overcome shortly after he started treatment.
We don't know "can't", he does not live in this house, and is not welcome here. In fact "won't" isn't welcome either, you will never know what your child is capable of doing unless he is given every chance to try. Yes there may be things he can't do and won't do but the key is to open every door, work towards small goals, and give them a chance. If your child can't walk, start with the basics, just like every other child they need foundation skills and even though they'll come naturally to some children, other they won't. Some of these skills they will still do poorly at, rolling was not a strong skill Nicky had and sitting properly unsupported isn't either, but that doesn't mean they wont be able to progress to the next step and develop the harder skills. We've been told he may never walk independently but we never tell him that and he is determined to do it, even tonight he grabbed the bottom piece to a lego table and held onto it while he was hunched over and walked a good 3 feet with it. He's grabbed onto the rail going upstairs and hoisted himself up and used it to try to walk up the stairs, he made it up two by himself. He also loves gymnastics, he took it in school, now he's determined to do a headstand. He doesn't even come close to doing it properly and quite frankly it makes me cringe, his version of the tripod is to put the side of his face on the ground instead of his head, he then slowly moves one leg at a time until his knees rest on his elbows, then he ever so slowly tries to stick his legs in the air. He has done this almost daily and you can see the determination in his eyes, so far he's got his knees part way up his chest, that's a few inches further than what he was able to do over the summer. Slowly he's doing it, slowly he's progressing, and I know that one day he will succeed. All the skills you'd think he would need to be able to do this he either hasn't developed or does poorly with, but that doesn't stop him from trying, and I won't either.
Give them every opportunity to try new skills out, help them, encourage them, even if they don't do it right or it looks too hard let them have a go. Eventually they'll expand what they want to learn and will try other things, but if you let their diagnoses hold them down and allow it to tell you what they can and cannot do, you may never know what they are truly capable of doing. Don't let their disability prevent you from opening the door to the possibility that they can do it or they may never even try. When they get older encourage them to become more active, it doesn't matter what the activity is, just find something they like and give them the opportunity to learn. Even if they can't do it on their own doesn't mean they can't do it at all, you can get special bikes with seating systems attached to them so you can take them for bike rides. There is ski equipment that allows them to sit while you ski around with them, you can get a sledge with or without a handle bar so either they can skate on their own or you can skate around with them. Don't be afraid of them getting a bump or bruise, if your child wasn't disabled it'd be a normal part of childhood, allow them to try even if there is a risk. You wouldn't stop a "normal" child from learning to ride a bike or skating just because they may get hurt so don't prevent your child from having an opportunity to try new things either.
Nicky has taken up wheelchair basketball, he is the youngest person on the team here, he plays with teens and adults alike and they don't know the word can't either. They don't even allow him to get away with slacking off, he is part of the team and he's expected to give it his all just like everyone else. He races back and forth up and down the court on his own, he's passed the ball and passes it back, he is not left out and his disability is ignored. There is no "he can't do it", or "this is too hard for him", and definitely no "take it easy on him", he choose to play and begs to go back every week, he loves that they allow him to play without babying him or doing everything for him. Though there are times he gets lazy and wishes someone would push him and do some of the work for him, but he's 6 and I wouldn't expect any less, it's normal for people to give up or get lazy but he has a whole team cheering him on and reminding him he can do it and he will do it. Yes it puts me on edge and I'm scared he may get hurt someday but if he wasn't disabled there would still be risks, when he asks to try or do things I do weigh the risks but I also ask myself "If his brother asked to play, would I allow him to?". For this activity it's a yes, and in fact even his younger brother it was a yes, he may not have played because it was too risky for a 4yr old to be out playing with adults but he stayed on the sidelines and learned to pass the ball and get around in the wheelchair (which he's a pro at) and a few weeks later, after they were done playing, they brought all our boys out onto the court and played a child friendly game with them. By the way my boys' won =)
I'm not saying your child will overcome all their obstacles or that they will be able to do some of the things my son does. I am saying to make sure you give them every chance possible to expand their skills and learn new things. "Disabled" doesn't mean "unable" it just means they do things differently and some times need to find their own way to do things and just because they do something differently doesn't mean it wrong or they shouldn't do it, it means they have adapted and removed the road block that says "You can't do this".
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