how/when do i talk to my child about his condition?

[miraclebaby]

So, I have a little by who will be turning 4 this October. He has a condition called Schizencephly. He has normal intellegence and has no idea that there is anything different about him. However, I fear that once he starts school, he will. I'm not sure how and when to approach the topic without making think that there is something "wrong" with him and traumatising him, but don't feel that it is fair to him to not tell him at all. any thoughts would be greatly appretiated

It pretty much boils down to having a hole in his brain. depending on the severity, ppl often present with developmental delays, gross and fine motor problems, partial paralysis, seizures, speech impairment, behavioral diffeiculties, "mental retardation" i hate that term, but thats how its referred to in the research). it all depends on what area of the brain is affected. He has been really lucky in that he only has some gross and fine motor problems on the right side o his body,but is still able to function for the most part "normally". however when it comes to sports and sme other things, he is not able to keep up like other children. He will also always be at risk of developing seizures, thogh up untill no there have been no signs.

I think as to when you should talk about it, I would take his lead. It may be just a small thing that comes up, like finding catching a ball hard etc, that could lead into a gentle explination.
As he gets older he will keep you on your toes no doubt and ask more on depth questions, which you can then answer.

I would focus on the word structure maybe rather than hole. A different structure to his brain that makes somethings more difficult for him to do. But also find things he does well at :)

I don't have experience of this condition, but I do have of another little known brain syndrome where the structure of the brain is different.

Thanx guys, these are fantastic ideas and i will definetly give them both a try. im hoping to gather as much info and ideas as possible. I am terrified of him growing up feeling like there is something wrong with him, becuase there is not, but everyone knows how kids can inturrpret things sometimes.

what differences does he have?

usually, children pick up at nursery some of the differences between themselves and their peers, or between other peers.

dd2 was aware quite early that she found things more difficult (and had additional support as a result) and so we had always discussed what she found difficult, using age appropriate words. (so at first she would describe herself as 'wobbly', now she tells people she has cerebral palsy)

does he have quite marked difficulties with motor skills? does he see ot/ physio etc? it was these things that first marked dd2 out as 'different' in her own mind, because her friends didn't get to play with the lovely ladies she got to see...

are you expecting him to need a differentiated appraoch to the curriculum? is he statemented/ going to be statemented?

in our experience, in yr r and yr 1 there is a lot of effort put into accepting difference - lots of circle time, lots of disussion. it's usually approached in a very matter of fact way.

dd2 got to the 'why, and why me' stage quite early (she's not 7 yet), but she knows that she was very poorly when she was born and her brain was injured. so, effectively, she knows that her cp is caused by brain damage, and it happened when she was born. she also knows that this makes her wobbly, and talk differently, and need glasses. but she also knows that these are just different things about her, like having blonde hair, and liking skiing and dogs.

tbh we haven't ever sat down and discussed cp - it has just come up along the way. i wouldn't set aside a time to tell him, that would set 'it' apart as something huge and important, and serious. he's not even 4.

i would let it come up naturally next time he finds it hard to do something, and say 'that's ok, do you know, we didn't ever think you would be able to do that? aren't you doing well?' and introduce the reason for his difficulties gently. i wouldn't make a big deal out of it at all. plenty of time for that later, when he really wants to know what causes it, what happened to him in particular, etc etc.

Ds attends a sports group and one of the guys ft wheelchair user there said the children that have the hardest problewm dealing with being disabled are those that are never told they are differnt to their peers .

Where those brought up with the yes im disabled or differnt to my friends so what do have a better attitude to life

obviously this depend son the nature of the disablity and how it affects them and on the understanding

Ds does not understand why he is different does not have the understanding but is starting to realise he is differnt to his peers so for everything he cant do im trying make sure there is a postive .

Eg ds cant walk/run liek his friends but now has a powerchair he can keep up and outpace them anjd keep going so am making it an envy thing

He cant climb like other 5 year olds but will go up using his knees and arms dragging self up.

Trying to bring him up with a yes im disabled and do things differnt, so what!!!.Rather than im slow etc

Hemihelp might gave some helpful tips for the one-sided weakness part...

My son is 4 and deaf and gastic problems. He knows he's different from other children. He knows that he eats differently and that thats because he's tummy works in a different way to others. But he says that it doesn't matter because he can still eat so its not very different. As for the deafness he's not accepting that as well. We go through phases of him being happy with his aids and then phases of him being very unhappy with his aids when he is upset that he needs them to hear. Ultimatly though I think its good he knows now that he is different to others. He's a very confident child who doesn't see his disability as something that will stop him.