UK Disability Resource of Disabled Needs

A big welcome to the forum.

Looking forward to getting to know you and reading your posts.

Hi

Welcome aboard.

Thank you! I am really looking forward to communicating with some of you.

As a single Mum and new to site's like these I am looking for people's support and advice with my situation. Ive 3 beautiful children - however 2 with problems. My eldest has been diagnosed with a rare type of downs syndrome ring 21 and trisomy 21 chromosome - she has a lot of medical difficulties. My son is also undergoing current diagnosis for ADD and ASD and perceptive evasion syndrome and also ring 21. I would love to hear from anyone who knows about any of these conditions (though I am told my daughters condition is unique).

Im going to be 29 in 3 weeks and I am just getting used to the fact that I am probably going to remain single. (although I have been for 3 years!)

I have support from my parents but could do with knowing more people with more experience and knowledge than myself.

Ive joined rarechromo.org - but I am waiting membership details as they need a lot more information from me - about my daughters condition and I still am not totally informed about her karotype.

I suppose Im just lucky as they said she wouldnt live to 7 and she has proved everyone wrong and is still going strong.

Thanks to all of you and look forward to communicating with you.

Marion

Nice to meet you Marion and to hear about your family.

It's good to know you have a supportive family as that can make so much difference but it is always good to be in contact with others who understand as well.
It can give you that extra boost you need sometimes to keep going and for exchanging ideas and thoughts.

How old are your children? They all sound such wonderful young people.

I'm sure there will be others here with insight into some of the problems that your children have.

Our household has Autism, Aspergers, Tourette's Syndrome, ADHD, Epilepsy, Mental Health problems. That's spread over 3 children with all three sharing several things.

I've not heard of "perceptive evasion syndrome" but I assume it is a behavioural disorder?

I hope you will find some support here and some things in common with others in a similar position. xx

My eldest daughter is 7 and she has Downs Syndrome (and ring 21) - she also has severe epilepsy, global developmental delay, optical hypoplastic and amblyopia of the left eye, she is lactose intolerant, incontinent, has hypotonic muscles. She also has a lot of autistic tendancies. She suffers from no awareness of day or night and no awareness of dangers around her. Her mental age is 4.

My son is 6 and he has been diagnosed with ADD and epilepsy and the peadiatrician has said she will probably diagnose him with the higher functioning aspergers syndrome. The perceptive evasion syndrome is commonly related to ASD and it is where you can offer a child punishment but it will make no difference - when a childs concept of consequence is non existent. - And this does cause a lot of behaviour problems. He also has quite a problem with excema - but this is minor compared to all the other problems!

My youngest daughter is 4 and appears to be fine.

I can relate to some, though not all, of the above.

Ours are autistic (one Aspergers, the other High Functioning Autistic)
Plus lots of other things (tourettes, psychosis, epilepsy etc)

I hope you find the forum a good place for support.
I think most people here can relate to the everyday struggles we face. Though our kids are all different, may have different difficulties etc. some of the daily struggles are very similar.

We're glad you found us.

take care