hi

he goes to a special needs school which is brill mainstream school was neva an option offered to us, his nursery used to b run by people from the british red cross it was a fair ride to and from it but was worth it for a few hours break a day and spend time with my youngest, then when he was 4 he started school part time and has onli just started going full time a few months ago,

i havent meet any other familys with a deletion at all most of the kids in his class have downs or other serve learning and behaviour disabilities,

is ur lil one at school/ nursery?

My little man also thinks 5 am is a good time to be up!! I have tried everything but unlike you i'm really lucky in that he goes to bed at 7 so I can't complain to much.

Does your little boy go to mainstream school?It s good you find the school supportive.

I've also got 2 other boys (11 and 3yrs), I also think that my others miss out to a certain exent but in other ways it has made them more caring especially my 11 yr old, My 3 yr old is a total hypercondriac(sp) he sees me having to take Harry to the hospital and drs and now if he has a smallest cut he now thinks he needs an ambulance!

Have you managed to contact any other families with a similar Deletion??

he isnt under the health visitor anymore i will talk to his school see if they can surgest anything about groups i can go to , my mum has been brill with understanding its more friends that dnt seem to understand they think i should b happy that he still like a baby but they dnt seem to see what i have to go through day in day out, i tell ya if they had to do it they would give up after one day lol, our day starts at 5 and im non stop til 11-12 at nite so as many others r im dead on my feet and find no time to relax, i also have a younger child who is 3 he doesnt have any of the propblems that my eldest does but its still hard on him he doesnt get enough time and attention and he jus fair to young to really understand.

I am very lucky we have a centre near us that is for disabled children and adults, we go to a toddler group there and have found some really lovely people and although they have a range of needs we all know to some extent what each other is going through, you should ask your health visitor if there is something out there, I found out through my sons physio.

Although trying to talk to my family about him is impossible, they seem to bury their heads in the sand their favourite saying is "see there's nothing wrong with him!" I think that during my pregnancy the dr's painted such a horrible picture that they do not want to see anything that is wrong.

I'm always on and off of here all day so if you need a chat I'm usually about.Talk soon xx

 thanks for ur reply i found the same problem with unique forums ive been searching months to finally speak to someone about the issues it always make u feel better to share, i find people around me dnt really understand so it nice to find someone who does. my first day here so was pleased to get a reaction from someone so quick, there is nothing in my area that offers support so this is my only life line at the mo !!!!!*** alt="" src="../../library/images/forums/discussionforums/icons/smile.gif" />

Hello, I also have a little boy that has a chromosome deletion his is on  number 9.

We have also found Unique who have given us loads of information  but their forums are so quiet so I tend to come on here.

We have always known my ds3 was going to have extra needs but we have only got the diagnosis last October, He also has hearing problems and is very short sighted,he has severe plagiocelphaly and a controlled heart condition. He just started to walk a couple of weeks ago but has now developed a limp, If it''s not one thing it's another!!!!!!

I find it real struggle some times not dealing with him so much but dealing with all the different people involved with him and having to chase dr's and appointments! I'm not the most assertive of people.

We do not have a chromosome mini group so would be good to start one!

i have a 5 year old son who has a rare chromosome disorder called ring chromosome 13 he also has microchelphly along with other things such as astma hearing problems sight problems, i wanted to share my story bcoz sometimes i feel im the only person going through these sorts of things so i would love to hear from others about how they are or have dealt with problems such as these,

it all started when he was 6 weeks old he wasnt growing as well as they had hoped he was a tiny lil thing at birth weighing just 5lb, then 6 weeks later we were told what was wrong we never imagined it would be that serious we were transfered to a specailist as the gp hadnt a clue what it was so that left us for 3 months wondering and trying to carry on with a normal life even when we did get round to seeing the specialist they couldnt tell us much about it and its still the case now no one nos what his furture might hold. a support group called unique have provided so much support over the last few years they hold a database of reported cases of this disorder and only have 80 reported which is shocking. every case is different aswell so still no answers,

he is 5 but he is more like an 18 month old he still in nappies, has hearing aids which r a big issue for him as he doent understand they will help him, he can walk a short distance so he goes out in a buggy, he attends a brill school which support him and the family so much, he has has so many operations for his ears and eyes, i feel sorry for him sometimes as he so small and i feel hopeless when i have to see him like that, its hard on all the family but i wouldnt change him for the world he the happyest child i no...

thanks for reading my story and i hope to hear from some of you about ur experiences