Down Syndrome

Can you prepare a disabled child for a new Sibling?

Kyd has Down Syndrome, you know this already. He is 9 1/2 (the half is very important at this age lol). He is an only child... always has been, obviously.... BUT not for much longer as I'm 30 weeks pregnant... as you know....

My biggest worry at the moment is how is Kyd going to cope with this huge change. I have so much running through my head about it, the what ifs, the hows, the strategies to think about and all that jazz... My main worry is... we just don't know what is he thinking about. He can't communicate what he's feeling very well and his reactions vary and are very unpredictable. We just don't know what he understands and what he doesn't. It's making me panic a bit.... can you tell? The biggest questions I have are 'how is he going to react to the new baby when he arrives and how do we deal with it?' 'how do I explain things like don't pick him up etc without telling him off or isolating him?' and 'how do I do all this without having the foggiest what the hell I'm doing myself?'

So how do you do the transition from 'Only Child' to 'Big Brother' after nearly 10 years of it just being him, without really freaking him out with the dreaded change?! Apparently, according to research, I need to focus on 'Explaining in simple terms and working on a step by step transition'... Easier said than done I think!

So after a lot of reading this is what we have been doing, I'm not really sure if we have actually done anything different or overly fantastic to be honest, but I have been trying...

Explaining in simple terms...

Kyd has been involved in this pregnancy from the very start, whether it be handing me a glass of water during the morning sickness to coming to the midwife appointments with me. We were a bit reluctant to explain it in full at the beginning as we had no idea what was going on ourselves. But we 'step by step' explained it to him without having to sit him down and go into detail, as I personally think this would be harder for him to understand and take in.... but would it? I think I was just scared to explain it. Was the 'step by step' way the best way or have I missed a trick by not sitting him down and telling him all at once and getting it out of the way?

He knows that babies grow in their mummies tummy. He knows that it takes time to make a baby in the tummy. He knows that sometimes it's a boy and sometimes it's a girl... and that unfortunately we can't pick which one it is. He also knows that babies take a lot of care. That they cry and they poo, puke and sleep a lot and take up a lot of mummy's time. We have discussed where the belly button comes from and the whole umbilical cord thing and we have even discussed child birth... to some extent.... which was fun *sarcasm*.

He knows that he will be the 'Big Brother'.... but I'm not sure he knows really what this means.
At the moment being Big Brother to him means... Sacrifices and change.
He has had to sacrifice his play room for the baby as it will now be the nursery. I read somewhere that doing the transition between giving up their own space for a sibling should be done over a good few months and that he should help with decorating, decisions and organisation.

This leads in to the 'Step by Step' system so highly recommended.

We started moving his toys into his bedroom bit by bit after I was given the all clear from the doctors about the genetic tests. We then moved the Sofa Bed to under his cabin bed and told him that he was really grown up now having a sofa in his room. Also that this meant he can have his friends sleep in his room with him when they have sleepovers. He Loved this. We kept some toys, the TV and his playstation etc in the play room whilst we decorated. He helped pick the wallpaper. He also helped paint the walls, he is very proud of himself and tells everyone he painted that bit and that bit... He helped put up the furniture too. FINALLY this bank holiday weekend we moved the TV etc over to his bedroom, after lots umming and ahhing about it. We don't want him using it too much so we have agreed with him at certain times of the day we will take the remotes to his tv and computer and that he only had certain times he could play it... So far so good but it's only been a few days I'm expecting tantrums about timings etc to come.

The play room is now officially a nursery... Kyd seems very happy with it. I think we did the right thing doing it in stages. I think one big move over would've been too much of a change so the 'Step by Step' system has proven to actually work here.

BUT this is before the baby is here. So he has no playroom now but to him this doesn't matter as he has it all in his bedroom 'like a big boy' & he sort of knows what is coming.... But what about the everyday changes the new addition will bring. The noise. The time he has to share between him and the baby. The new routines. Ohhhhhhhhhh it's never ending. We jump one hurdle and reach another.

So when he gets here how do we deal with it?

Kyd loves babies... but he's never lived with one! Will the noise get too much for him? or will he just deal with it? It's easy to say 'He'll get used to it' when discussing your average child but with a disabled child this isn't always the case. It can cause distress and a whole array of problems. He is going into puberty soon and his mood swings are already setting in, getting him ready for this will be hard work... getting him ready for this with an added baby brother in the mix... might just tip him from manageable to unmanageable. WE JUST DON'T KNOW.

I may be panicking for no reason here but if there is a way around the issue, we will have to try and do it... successful or not.

NEXT STEP... Scheduling KYD time...

I know this is your average parenting with new siblings etc I've read up on all sorts of parenting methods for these things. Scheduling specific days and times for time without baby and just with parents is a proven method for reducing jealousy. We have already discussed this with him. We have a list of his favourite days out and things to do and we will schedule in at least one of these a month. He will still have the all important football every other week too which will help as baby won't be there and it will be just HIS time as normal. Luckily he will still get his Respite care once a week and a whole weekend a month. This is with a lovely respite care family who are HIS 'friends' they aren't anything to do with me or the rest of the family... they are just HIS! We have the time where baby is in bed where he will do his homework and his reading book every night. I think we have KYD time covered.

... Including him in baby's routine...

Apparently if you let him have a job to do (with your help) to help with Baby, he will feel more involved in the whole thing and therefore he will feel more comfortable around baby....

My only issue with this is I will have to be careful with what he helps with as he will take it upon himself to 'help' the rest of the time and I may not be around to supervise. I know he's not stupid, he knows that he should leave it to me or Hoff but sometimes when in 'Help mode' he fails to act on that. He acts impulsively this is all part of his disability and this scares me a little BUT as long as I'm on track and paying full attention at all times it should be fine.... I might be kidding myself here, can you hear the sarcasm.

We are using cloth nappies and when we received the pack of them the other day I had him practice on a teddy just like we were. He was so good!! He picked it up quicker than Hoff, but then again it's been 30 years since Hoff was in nappies Kyd still wears them so he had a head start. He really enjoyed helping me and passing me the bits and bobs so maybe this can be his job. He can help me with the nappies... This may not be a final decision, as once the smell hits him... we may have a runner so we will see what and where to go from there with the whole Help thing... worth a try.

and FINALLY taking our time to take in the change AS A FAMILY...

Kyd has taught me over the past 10 years that life has to be taken day by day. He has his own ways and his own agenda in life and I have to just get on with it and pay attention to where he's going when he goes there I have to just support him and follow. Pushing him to grow up, succeed in certain things and accept changes will just cause upset all round. He goes at his own pace. He learns at his own speed. He understands what he understands and whether we understand that, is a completely different story.

I believe we can prepare our kids for change, but we can't predict how that particular change will effect them or how and why it does.... until it does. Prevention might be better than the cure in most cases, but we can never predict what we have never experienced ourselves. Sometimes you just have to take steps and then pray. This is the only way parents of children with disabilities can live their lives. All children are different, that includes our children, they may be named and labelled but those labels don't come as standard, they depend on the child, the situation, the effects of the diagnosis and even life itself. Life is a journey and on that journey we learn, we live, we laugh, we cry... and in my case.... we panic and we prepare for failure.

Whilst writing this post I've realised I started with panic and manic questions and finished answering my own questions and coming to the conclusion, I've done all I can do with the research I've done AND I will just carry on doing what I'm doing and deal with it, when it, whatever 'it' is, arises. I'm not stupid, I know my child and although I don't know how he'll react... I'll react accordingly with whatever that may be...

I think, I think too much!!... I love it when I resolve my own issues with writing a blog post... blog therapy is the way forward I tell you!!!

I'll keep you updated on what, why and how Kyd reacts to his new brother in due course... 10 weeks to go... *eyes widen* jeeeeeesssssuuussss that's not long is it!!!