Looking for a hope

[sukanyanarain2004]

my son aged 13 is one of the twins.he was born with umblical hernia and urinary reflex which got cured. Then he had developmental delays and mild intellectual disability . He was leading a normal life but suddenly now he is having a problem with walking..his posture is becoming very different...his knees are running each other and he is gaining lot of height. So I had taken him to a Ortho doctor who said that his knees are very weak and this condition is called patella Alta where the knee cap moves up. So in future surgery would be the only option..I cannot imagine my child with a knee surgery..if anyone had been or seen these conditions in some child I need hope that my child would live a healthy life.

[Hopesearcher]

Hi I saw you didn't have any replies comma and although I'm not sure I can be of any help, I want to do my best to give you some hope. Will try to reply more later x

[Hopesearcher]

Hi there

I can understand why at this moment in time, you'll feel very afraid for your son's future. The majority of kids that I have met or heard about that have a disability, are very determined and will Conquer any obstacle that is put in their path.

I'm 41 with spastic diplegia. When I was born 6 weeks early, they told my mum that I would never walk, talk, hear, see, or or even sit up. Each appointment I went to, I was doing something that they did not expect!

By the age of 5, I was walking on crutches and by 21 I was driving. I've managed to go to mainstream school, pass exams, hold down jobs, and even got a bursary to do a certificate in personnel practice course in my early 20s.

It is one thing to tell you all these things, but quite another if a, your son is not capable of these things, and be b, if he can, or has the potential, is he motivated? I know that when I was his age, I was supposed to be wearing a back brace to correct/ prevent scoliosis. Of course, I was a teenager and didn't want to do as I was told! It was uncomfortable, and anything that was good for my health was just boring!

Looking back now, I can see the consequences of my stubbornness. My scoliosis has got much worse and I now have a kyphosis as well. So what I would say, is that your son has more chance of being independent for longer, if he can stay as motivated as possible, and do everything possible to help himself. Whatever the physios tell him, he must do it. However boring, however difficult, however frustrating and annoying, I cannot Express hard enough, how important physiotherapy at that age is. It's important at any age, but when he is growing, these are the times when it will take root for his adult years.

The other thing that I think is important for you to know, is that CP itself does get worse as you get older. ( they are only just starting to tell you this.) So yes it's important to stay as independent as possible for as long as possible, but, for example, I probably should have started using a wheelchair much sooner than I did. I pushed it as hard as I could for as long as I could and I think my quality of life suffered as a result. It's important to be aware of this, because you don't want to go into anything with Rose tinted specs on. It's important to have all the facts and information, so if you know of anywhere that you can get information and advice, help and guidance, it's important to go there and do that. Information and knowledge is power.

Lastly, I believe anyone can do anything if they want it enough. That's not to say that I am going to suddenly get up and start ballet dancing or skiing just because I want to! What I mean is, that determination can do a lot for you. That, support and understanding are the most important ingredients for your son to have the best possible chance of the future you hope for him.

Please do tell us more about him, I would be interested to know where he is at in his journey.

I do hope that between us, the two answers you have received are of help to you.

Sending best wishes to you and your son x

[Hopesearcher in reply to Hopesearcher]

Something else has just occurred to me. My husband used to care for a gentleman who had CP. Jim was also one of twins. As the other twin was perfectly healthy, when he was old enough to do so, Jim took the hospital to court and won. If you haven't already done so, it may be worth getting advice on this, as some recompense may be owed to him. X