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New to this!!

Hi, i'm new to this and am hoping to meet other parents with children with special needs. My son, Beck is 2 1/2 and has cerebral palsy, most definately the most beautiful boy on this planet, I might be slightly biased though, lol!!!!.

We are nervously trying for another!! Any advice??

Sam xx

Replies

  • hi sam.. welcome to the board! I'm mum to daniel who has spastic cp affecting his right side. he's 18 months old. I'm also 28 weeks pregnant with no.2!! lol

    I did always want more than 1 child so in a way didn't want the cp to change that and let it 'win' and control our families future. I'm a bit stubborn like that! lol :\)

    His paed said that it helps to have siblings as it they always have people of simliar age that accept them as they are , that also they will copy their behaviour which willl push them to try and function in a 'normal' way (ie. will push them to walk more etc). It will also shift the 100% attention that the child had got to sharing the limelight with someone else. (I know what I'm like sometime and over fuss daniel before realising it and stopping myself)

    I did decide to wait til daniel was 1 before trying for no. 2 and got pregnant straight away again. In a way i'm glad as if I had to think about it too much I would've changed my mind! lol I'll be honest and say I've worried from the beginning of this pregnancy and will do til the end... & I've not enjoyed so far. But it does depend on how your son got his cp.. daniel had a stroke whilst I was pregnant so I'm on pins that will happen again even though the dr's have said it's very highly unlikely, they can't say for sure it won't. I have been given an extra scan (although I did have to ask for this they were very happy to give me one) which I will have next week at 29 weeks to check baby. :\)

    How is your son affected by his cp? daniel still doesn't walk/crawl but he does bumshuffle at home. This is a bit hard for me as I'm a full time mum and I'm finding carrying him upstairs for nap times etc quite hard now.. not sure i'm going to do it in a few weeks, might have to try to get him to sleep on the couch downstairs but i know that's just not going to work! lol... also he goes to a disability centre every monday morning & it's getting harder to lift him out of the car and to carry him in. But it's like with anything we'll just have to find a way around it! :roll:

    sorry it's turned it a bit of an essay! lol :\) if you want to know anything more then just ask... xx

    ps. I also go www.specialkidsintheuk.org which has a good forum on it too... xxx
  • Hi

    Thanks for the info and advice. Good luck with the pregnancy!

    Beck was born at 29 weeks and although he had a bumpy start with 10 weeks in special care, the doctors said he was fine!!! He was only diagnosed this time last year as after begging to be seen by different doctors because he couldn't sit up or crawl, we finally saw a neurologist and had an MRI scan. What a shock, I was devastated when the doc told me he had cp.!

    I then found out I was pregnant with twins and they turned out to be heterotopic (one in womb & one in tube) so another shock when I lost them..I think that's why I'm so nervous, I know if we do manage to have another it will be good for Beck as he loves company especially kids.

    Beck goes to nursery a couple of days a week and he loves it, we are waiting to hear if he can go to a special school for a few years, just to get him used to splints and other kids in his situation.

    You sound like you are in control and I'm sure the rest of the pregnancy will be fine. Nice to hear from someone.

    Spk soon

    Sam x

  • hi sam xxxx

    can I just ask you why you want him to go to a special school and not keep him in mainstream school?

    I've been thinkign alot about schooling since speaking to the inclusion teams from our council and it's scary how quickly it comes around to making decisions!

    speak soon xx

  • Hi

    We have chosen a special school as we went to see it and meet the headteacher and it was fantastic. They have a hydro pool, physio on site and other kids wear splints and are able to get about with a frame. We are hoping when Beck see's other kids with splints he will tolerate his more.

    We have chosen a mainstream school for when he is about 6 and the special school assist with integrating him into it.

    What are your thoughts?

    Sam xx
  • I suppose it depends on how each child is affected? how is becks affected? can he walk on his own or is it with a walker frame? Does he not like wearing the splint because of what others say/looking? or is it just because he's a stubborn/independant toddler!! lol :\)

    As daniel's disability affects him just physically rather than mentally (so far & keeping my fingers crossed still! ) I've always though best to stay within mainstream schooling. I have a bit of a so what attiude towards his disability and I'm hoping it will rub off onto daniel. He's got to get used to the looks at some point and all kids get teased about something at school but hopefully he'll be able to shrug it off. but we'll see how it goes...!

    My sister best friends' daughter is 6 now and started mainstream primary school last year. she has right sided hemi too. She wears a splint on her right foot/leg and a thumb splint like daniel. she LOVES it!!! It gave me alot of confidence to send daniel to mainstream tbh.

    The kids have asked her about her splint but they're not really bothered. She does her best to join in at playtime but gets abit more tired than the others. she also has speech problems that she receives her sessions at school along with her physio/ot.

    If you have a special school that has great links with a mainstream school then that's great. what are they going to do in the year that he's at special school? will it be the hydro pool, physio etc that attracts you? sounds like a good school. I've not looked into special schools around here, but have a look.

    speak soon
    wendy x
  • Hi wendy

    Beck is unable to walk, stand unaided and balance properly. He has splints for both legs and as his feet point straight down they force his feet into a 90 degree angle and it is uncomfortable for him. He can crawl but can not walk, even with a frame. We have ordered a bigger buggy as he is now getting to big for his pram.

    The school only has a few pupils per class so more attention is given to individuals. Beck is only affected physically as well, he was talking at 18 months but just couldn't get anywhere. His understanding and language now is fantastic (thank god).

    I'm the same with other people and Beck's disability, I don't care what people think and I am on the park quite often at the top of a climbing frame or coming down the slide!! lol. A couple of people ask me whats wrong with him and others just stare I would rather people asked but if people stare they stare, I don't mind and Beck is very sociable so will tell people he can't walk (he is a sucker for getting attention).

    Speak soon

    Sam x
  • hi sam :\)

    sorry I've not replied sooner! The school sounds like a good introduction to school life! :\)

    so you do think that you'll more kids? it is a tough choice.. on the special kids website a woman told she waited til her daughter was older (5 years old) but wished she'd had another when her daughter was 2/3 years old as her daughter didn't walk and she found it very difficult carrying/lifting her daughter pregnant.

    I hadn't even thought about that! lol But I thought well better have it sooner! lol it is hard now lifting daniel, but as he can bumshuffle I try and get him to do that mostly.

    speak soon, wendy x
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