Loraine Diamond
Hello, My name is Loraine, my son, Guillaume, was diagnosed fragile x when he was 4 years old, because he needs more attention than an other kid (speech therapist, different teaching techniques,...)he goes to a special needs school where is extremely happy, and grow up, at is rhythm, very well. Before that Guillaume was is a "traditional" school, but because of his ADHD, the teacher could not handle him, since there were about 25 kids per classroom. After, Guillaume, we had Julie (I did not know about Guillaume's syndrome at that time), we were still at the stage when you go from one doctor to another before one of them finally discover his syndrome. Anyway, Julie is also a fragile x, but she among the 50% of girls where although they have a full mutation of the gene it does not affect them. After, Guillaume and Julie, I got pregnant by surprise, it would have been a great one if Guillaume was in a better health condition, around 5 years old, Guillaume started to have epilepsy fits, which, was very stressful and for me, despite that syndrome, to much to morally handle. We decided to have a genetic test on my last pregnancy, and discover that it was a boy, and that he had a full mutation of the syndrome, and frankly I could not get through this pregnancy. We took the decision to cease the pregnancy, and I got to hospital. The night I was in hospital I actually lost the baby and had a severe blood loss and was very lucky to be in hospital while it happened. It turn out that my baby was so severely affected by that syndrome, that his hard did not build up normally, and stopped living. I think that you are very lucky to already know now that your child is a fragile x. My son is 7 years old now, he goes to a special needs school, and loves it. I remember bringing my kid to traditional school and have to face up with a angry teacher that could not handle Guillaume, angry mums that complain about Guillaume behaviour to there child. I remember doing the weekly shopping and having to hear disturbing remarks towards me, people saying that I could not raise my kid and etc... but I manage to look up to people is the face and tell them my son is disable so what! He is still my kid, and frankly, now the ADHD is nearly away, my husband and I are leaving again. The only thing when Guillaume was your son's age is that is did not sleep a lot, apart from that he always was in a good mood, smiling, laughing, always eating well. Guillaume became very difficult to handle around his 4/5 birthday, because of ADHD, and he could not get any medication for it because it was not compatible with his epilepsy drugs. Following my experience, the most difficult was the ADHD period, but now that Guillaume is more stable, I would love to have another baby, but I am to scary to take the risk of having another disabled child, because you will see that the amount of time, energy you will need for one disable kid and to have to deal with another one, is not right on Guillaume and Julie, because they of course will still need my availability, and I really will not be able to deal with it with another disable kid. We are now a very happy family, Guillaume is different, but Guillaume under that syndrome is still a kid with tons of quality, and Julie is a wonder. You will need lots of support, and some days you will really need a break, I hope your parents/friend will be understandable and give you some time to gain your energy. Please let me know who your are getting one, and all the frustration you will cross, In my experience I grow up a different persons of who I was, I feel that having a kids that is different is not difficult to coop with, is having to coop with the look of people, people's reaction, having to find a good special need school where the kids are considered has a person and not as a disability. Continue your study, but take breaks for from time to time. All the best, and big hugs to your son. Loraine