!8 yr old daughter with velocardiofacial syndrome doesn't want to grow up

[Sueval]

My daughter has velocardiofacial syndrome otherwise known as 22q11 or digeorge. She has a congenital heart defect, mild developmental delay and has suffered with juvenile arthritis which has left her with hip damage. She had heart surgery as a baby and is due to have major heart surgery within the next year or so. She has always enjoyed school and is now doing A levels (Y13) although she finds organising her study difficult.
My daughter is finding things tough at the moment, especially since she turned 18. She says she doesn't want to grow up and wishes she could turn the clock back. There is a widening gap between her and her peers. They are all going out dating and partying and my daughter turns down any invites to go out as she is too nervous. She doesn't drink alcohol and uses this as an excuse not to go out with friends. She is also not keen on learning to drive as she is afraid of having an accident.
I try to encourage her to be more independent but progress is slow. I also have a 14 yr old son who is growing up fast. He is now more mature and capable than my daughter which she finds difficult to deal with. I am so worried about her future. Is there anyone out there who is facing similar issues?

[countydurhamlass]

hi sueval, my son aged 7 (nearly 8) has 2q11 !!! do you have facebook? there is a group there who are absolute fantastic and i know a few of them have teenage children, indeed one of my "friends" from the group has a son about the same age as your daughter (they live in america) and is having very similar problems. there was even talk of someone setting a group up called crew 22 or something like that for the teenagers. perhaps speak to your GP or specialist familiar with 22q11 so that measures can be put in place, ie some sort of counselling, specialist form of work (not sure what) so that it doesnt lead to depression for her.

[Sueval]

Hi countydurhamlass, Thanks so much for your reply. It really helps to know there's someone out there listening.
I am on Facebook. There are a number of different VCFS groups on there. Which one do you mean? I have to be careful to respect my daughter's privacy. We share a lot of friends on Facebook. She feels that her medical condition should be kept private and only tells people if she thinks that they will understand and not label her. I will tell her about the group Crew 22.
The main problem we're having at the moment is that there is a big difference between the level of support for children and adults in the NHS. My daughter used to have a paediatrician who understood about the syndrome. (I'm afraid the GP has been a waste of space so far, but that's another story!) Her physical problems have been treated by separate specialists but no-one is even acknowledging her emotional and developmental problems which are mild but still have major implications for her future. Probably because she is a pleasant girl who appears to be coping well. She's having an assessment by an educational psychologist soon so I will see if they have any suggestions regarding counselling etc.
I know that it is up to us as parents to support and encourage our children. However, we also need a little support and encouragement sometimes don't you think? I just have to keep reminding myself of how far she has come. When she was little, we were told that she may not be able to access mainstream school and now here she is studying in sixth form for her A levels!
Thanks again for your suggestions.

[countydurhamlass]

this is the group that has helped me a lot

Velo-Cardio-Facial Syndrome Educational Foundation,Inc (VCFSEF) on Facebook

also max appeal

www.22crew.org is the group i was referring to

[Sueval]

Thanks. Will check it out!

[slightlycrumpled]

Hi my son, also nearly eight has the syndrome too. I'm afraid I don't have any advice as we are some years behind you but just wanted to say hi.
I don't come on here often anymore, but would be interested at finding a facebook group.

Hope the ed psych can help with your daughter, (she sounds great btw).

[Sueval]

Hi slightlycrumpled,
Thanks for getting in touch.
I am just reading a book called "A Different Life" by Quinn Bradlee (available on Amazon). It is a very moving account of growing up with the syndrome with contributions from Dr Shprintzen who discovered the syndrome and runs a VCFS clinic in the USA. it is a very positive book and suggests ways of supporting kids. Apparently there's a website called FriendsOfQuinn.com. Going to check it out.
Best wishes

[slightlycrumpled]

Thank you sueval, I've ordered that book and am looking forward to reading it.

Have had any progress?