#1
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Hi,
I've just joined because we are nearing the end of a week of a Multidisciplinary Team Assessment of my child and it's all been hard and quite a shock.

My 3 yr old has been developing quite slowly from birth and despite lots of genetic testing has no known condition or syndrome. She has a severe Ideopathic Scoliosis and as a result lives her life in a plaster cast (like one for a broken leg) that goes over her shoulders and ends low down on her hips. Dealing with the Scoliosis has taken up a lot of time as she has the plaster jacket changed under general anaesthetic every 10 weeks. The jacket is really tight on her and very uncomfortable also it restricts her physical mobility but she has to wear it to stop her spine crushing her lungs.

I've known she has a speech delay but I hadn't realised she is on the 2nd centile for this and it's the same for several of her cognitive tests with the Clinical Psychologist. Only on one test did she score within the normal range for her age.

Looking back I guess all the signs were there that she hasn't been developing very well but I've been in denial - has anyone else felt like this please?

Also the Clinical Psychologist has said that I need to arrange playdates with new children for her over the holidays but I've no idea how to do this. When we have been at a mums and toddlers group I have to spend my whole time glued to Abi as she falls very easily and can't get her hands out in time due to the weight of her plaster cast. As a result we haven't done the usual social thing. Friends children that we do know have started to say say she speaks like a baby and laugh at her and at her appearance. Abi hasn't noticed it (I don't think she has) but I am gutted by it. Maybe I just need to get over myself but is it realistic to invite parents with the same aged children over to play?

Sorry this is a long intro probably because I've had a bad day at the hospital but if anyone has any advice or can share experience I would be really grateful.

Thank you,
Sue
#2
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Oh Sue, I am so sorry, I can not imagine what your life is like with the casts, that in itself is so much to deal with I can only imagine how hard it is to watch for things like delay.

If friends children are being like that, your friends should be teaching them not to be prejudice, that is so wrong.

I can understand the difficulties in play dates etc, my son has CP amongst other undiagnosed conditions, he is very delayed in every aspect, due to his delay I find it hard to have him play with other Children, I too kind of lock ourselves away, he can't play like other Children and it hurts me to see the differences and to be honest he doesn't seem to understand when around other Children, he takes no interest.

I am not sure if I can help in solving your problem, do you go to any Pip's groups etc, were there are other special needs children, the parents and Children don't judge as they are the same, maybe that would be a better solution.

I just wanted to let you know I was here, the other thing you could do is see if there are any other parents local to you on here, I think we could start little local play groups through the forum.

Kara
x
#3
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Hello .. just a note to say hi Smile and hopeing you are having a better day today .. dont know if anybody else suggested PORTAGE to you yesterday ? they ..in my experiance .. were FAB !! they not only offer you support but can often connect you to other children ..playmates ..carers and parents in your area ... Anyway .. thats my 5p ..lol take care and SMILE ..You are not alone Chick ..Smile thanks Nicky x
#4
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My daughter will be 4 in November and has recently become friends with my cousin's daughter who will be 2 in November. A 2 year age gap but they seem to be on a similar level with their developement. It's funny as my daughter is very tall for her age so she's a heck of a lot bigger than my cousin's daughter but they play nicely together and it's nice to see her play with someone more on her level, I just try to ignore the fact that she's 2 years behind in her development, I don't seem to think about it too much when we're round there playing, and that's nice. I drifted away from a lot of my friends with children the same age as Maddie, it's hard to see the development gap getting bigger, their children seeming more like children and Maddie seeming very much like a young toddler. x
Julie xx
#5
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Hi, Thank you so much for your replies. I knew I wasn't the only parent to feel like this, at least in theory but now I know it in practice. I don't want other parents to be in this position but I feel so much better knowing there are others of you out there. I am so grateful to you for being so welcoming to me.

We've had our case conference today about Abi and it was so much better than I thought it would be. They say Abi is okay cognitively for her age but she has a 'significant' speech/language and understanding delay. Apparently she scored okay for matching pictures etc so that's how they know cognitively - seems a bit wooly to me but this is the 1st tiime in Abi's life I have ever had good news (apart from when she was born).

Abi is due to start nursery in September in the mornings and they say it is appropriate for her to go into mainstream as she will pick up language faster by hearing other children using it. She will go in with 1:1 help as she falls so much also she will receive speech therapy in the setting. Apparently I should go for testing as Abi and I both have lax ligaments and it will be better if I have all the blood tests rather than Abi (according to the Paediatrician).

The other thing that came up is that Abi is suffering huge frustration due to the speach and understanding delays as well as wearing the horrible plaster jacket. We have been told to give her really clear boundaries as well as trying to give her maximum skin to skin contact. We know to hug her around her arms and legs as we only get to hug her whole body every 10 weeks for an hour before cast change. However our boundaries have been all over the place as we feel so awful about her being in the plaster jacket.

Has anyone any advise on boundaries please as guessing it seems really hard doing this with a child with a disability? Also would love to hear any ideas about bringing on speech and understanding.

Thank you for suggesting Abi plays with younger children I am going to try that. Also I really thought I was a terrible person finding it difficult to see other children Abi's age developing as Abi seems to be left further and further behind.

I haven't heard of either of the organisations suggested so I will do a search now.

bw
Sue


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