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Caring for Disabled Children - Unique Chromosome disorders - Carers UK Forum

Caring for Disabled Children - Unique Chromosome disorders

Tell us a bit about yourself here.
My name is Marion. I am single Mum of 3 children aged 4, 6 and 7.

My eldest daughter has a rare chromosome disorder - she has ring 21 but also trisomy 21 - so although diagnosed with Downs Syndrome - because of the deleted information in her ring chromosome (which is not the duplicated chromosome) she doesnt look like Downs Syndrome, - however she does have a lot of problems the same and some not.

She has lots of medical needs and I dont often get to discuss them outside of appointments as I dont know anyone with similar to her disabilities - She is now at the mental age of 4 and still in nappies she is also lactose intolerant and has very severe epilepsy - is partially blind in her left eye and has hypotonic muscles. She also has autistic tendancies and does not sleep very well. She has been suffering with seizures all her life and an eeg showed that she has in the region of 100 seizures a day. Currently they are lessened with medication but yet again they are changing this as they are still occuring and specifically a lot of absences... on the up side of things - Sophie has developed a natural ability musically and creatively.
She is the kind of child who is accepted by everyone - she is so lucky how popular she is and this carries her through along with her contentment and I am so proud to be her parent, even though she has a lot of care needs.

So onto my son who is 6 who has recently been diagnosed with ADD - and his paediatrician is also looking at a diagnosis of Higher level Functioning Aspergers syndrome, he also was diagnosed with ring 21 and perceptive evasion syndrome. I have had a struggle with my son to get diagnosis and also help for him as he has such poor social skills and sometimes he can get me down with his negativity - although he doesnt realise sometimes what he is saying - it can be very hard to hear your 6 year old saying that everything is their fault and that they want to die. He now gets Action plus at school and also see's a play therapist and has 'nurture sessions' at school. So it's lovely when he comes out with a sentence like 'you're such a kind girl mummy' - some of his habits are hard work when he lines things up constantly and shouts a lot. Lucky for me that on the positive side of things he has an almost perfect memory for details (like when it comes to watching a film) and is brilliant with numbers and when he is getting attention he can be the most loving child, typically known as a real mummy's boy.

And although I have two children who both have disabilities my youngest who appears to be problem free - well lets just say understandably, she is constantly fighting for attention and is a little challenge all on her own. But very understanding to her siblings.

I came to this site as I was hoping I may be able to get some support/advice and possibly to communicate with other carers of children with rare chromosome disorders or similar to my own children's disabilities.
Hi Marion,

This will have to be a very quick welcome as I need go offline just now.
Welcome to the forum.We do have parents here who care for their children with various disabilities and I am sure in time you will get to know them and they you.

I have found this link

http://www.rarechromo.co.uk/html/home.asp

There are so many links to information on there and they also have a forum you may decide to join.

Look forward to reading more from you

Rosemary
x x
You may find support locally too.Their membership gives a breakdown by county.Hope of some use to you.

http://www.rarechromo.org/html/bycounty.asp

England Surrey 103
I registered with them a few days ago and am waiting for my membership details to come in the post, thankyou.

More than anything I just need someone to talk to about the struggle it is for me - especially dealing with my son as he is always so hard on himself and talks often about hurting himself and he can be very aggressive. It makes me very sad when he says he wants to die.

The school he used to go used to tell me he was a very naughty boy that he wouldnt do any work and he would do silly things at school like turning on taps and flooding the classroom and then I couldnt tell whether he was doing these things deliberately because he would be kept in from playtime - he didnt want to go out because he always claimed to being bullied and that he had no friends. The thing is with him is he wants to play his way and is a little forceful - its his way or no way and he cant understand when others wont play with him. My sister's fiance accused me of letting him run riot that I dont discipline him - but this simply isnt true - all my children thrive on the rigid routine we have at home - which we have to have because of things like all the medication my daughter has and other things. I am firm with my children - but I have to draw the line somewhere when I know my soon needs tlc and emotional support.

I dont get to talk about how I feel and how the strain takes its toll on me - because everytime he gets upset and cant understand why people are saying he is naughty - when really he doesnt intend to be naughty - he just doesnt know how to say he needs help and he doesnt know how to talk to people without being rude - but it's not intentional, we can be walking past someone in the streat and he says 'he's fat' or 'why are they doing that?' - to him its normal to say those things - he doesnt have a concept that what he is saying may have a negative consequence - to him its just a question.
To add to that difficulty - my daughter can be outside - with rain pooring onto her coat and she will still ask several times 'is it raining mummy' - and because she looks normal - people give me funny looks as if I'm not teaching my children.

I had to stop being friends with one woman because she said my daughter wasnt respecting her dog - when in reality my daughter doesnt understand and is terrified of animals - and her brain doesnt think the way a normal 7 year old can. Am I making any sense???
Hi Marion - you're making perfect sense.

Your 6 year old is showing typical autism/Asperger syndrome behaviours - it's partly wilful, partly obsessive behaviour regarding the taps, etc. The "all ways are my ways" behaviour is about needing to feel in control in an environment he cannot understand and which therefore frightens him. You may find it helpful to look at the National Autistic Society website as although autism/Asperger may not be the primary problem your children have, it needs to be approached as though they have an autism spectrum disorder - as it affects almost every aspect of their life. The main link is http://www.nas.org.uk - there's a lot of information on the site, so have a cuppa handy!
Hi - thanks a lot for that I just briefly checked out the site and the page about aspergers syndrome - which is what my peadiatrician says my son may have - and everything that is mentioned I can completely relate to my son - he was very mildly late on reaching his milestones - but was very late in toilet training and he is very clumsy and has been also diagnosed with both ADD and epilepsy - I have to agree socially he really struggles and cannot interpret people's expressions. He often says things I know he doesnt really doesnt understand.

As for my daughter - now that I have looked at the autism section on that site - I think I may go back to my peadiatrician when,sophie goes for her monthly appointment to find out if she actually can be diagnosed with autism aswell as she shows many of the traits - such as the rocking movement and sensory problems - she is unable to touch certain things because of their texture - cannot stand loud noises and has absolutely no awareness of day or night. I would rather she had a correct diagnosis so that I can help her more.

Thank you very much for your help, also could someone please advise me on this...
I already recieve full disability for my eldest daughter and someone last week suggested I should apply for my son also as he is also on regular medication for both his epilepsy and he has quite a problem with his excema but mainly for his behavioural difficulties... do you think I should apply for the DLA for him also? I have sister who applied for both her sons but I am not sure why she did - as I dont think she has a proper diagnosis. I just dont like labelling my son with disabilities aswell as my daughter - but I have to accept he is - Ive just been reluctant to apply for DLA as when we first applied for my daughter we actually got turned down twice, until she got diagnosed with the epilepsy and her statement was done.
Hi Marion,

I would say the best way is for you to get some professional advice.CarersUK have their own helpline...

CarersLine can offer advice on any issue to do with caring and disability such as benefits, hospital discharge, employment issues, making a complaint, getting a social services assessment and much more.

The service is free. Unfortunately the service is currently only open for 2 days a week. However we do have an answerphone service if you leave details an advisor will call you back.

Telephone 0808 808 7777

Open Wednesday and Thursday 10am-12pm and 2pm-4pm

***CARERSLINE OVER CHRISTMAS***

Carersline has closed for Christmas but reopens on 2 January 2008 from 10am -12 noon and from 2pm -4pm.

Also contact your local welfare rights office.These are very good and will handle all aspects of your claim from filling the forms in through to any possible appeals if you are turned down.

Rosemary
x x
I agree with Rosemary - but the short answer is "yes" - apply for DLA. The worst that can happen is that your son is not entitled, but that doesn't sound likely. Either way, get advice.

As far as diagnosing your daughter is concerned, it may help to point out that some estimates suggest that as many as 10% of people with Down Syndrome also have autism - and that it is often ignored as part of the Down's.
thats been really helpful
Take a look at this too Marion

http://disabledkids.myfineforum.org/index.php

More links you can try, you never know what information will crop up.