Worried about my son

[Mumt01]

Hi everyone. My ds is 5 and a half and he started reception in September, we delayed his start date due to him being delayed. We have seen a piedatrician and he's had blood tests and they have diagnosed GDD and he is missing chromosome 2. Just before Christmas I had a meeting with his teacher and the senco and they have said he is 2 to 3 years behind where he should be. I'm so worried for him, he can't write his name yet, when he is taught letters he don't remember them and he even struggles to count objects. Since he has gone back after Xmas hols he is very whiny getting him to school. I'm so worried about his future. Can anyone relate to this? Is there any hope?

Many Thanks
Mumt01

Did the paediatrician not advise what the significance of the missing chromosome was? How it would affect him and whether he would realistically be able to catch up on his learning and development? 5 and a half is young but, at the risk of sounding blunt, I would check out special schools in your area. My son is nearly 11 and yesterday I struggled to get him through a homework which was just saying what is the missing number in a sequence of numbers from 45 to 50. We did some reading and the word 'use' cropped up 3 times. Even after going through it with him twice he still got it wrong the third time. I am sad that he is so learning disabled but the silver lining is at least he is in a great special school where there are 6 children in the class so the teachers can try and help to the max and all the kids have issues so he doesn't feel bad about it.

Hi. We are awaiting an appointment with a geneticist but that's not till April so we have lots of unanswered questions regarding the missing chromosomes. I just feel like I'm hitting a brick wall. I feel so down and worry for his future.

Xx

That is a long time to wait when you're desperate for answers. I only have sympathy rather than any other tips I'm afraid. I'm not sure I'll ever come to terms with it either. It is worrying when you can't imagine what they're going to be able to do when they leave school, but who knows they may have some niche interest which turns into a career and be just fine!

Does your son have an EHCP? My son is 5.5 in Reception but he has FT 1:1 support. It must be hard waiting for the genetics appointment.

My nephew has a deletion on chromosome 2 but it's so rare no-one knows its significance. Have you come across Unique - for rare genetic disorders and SWAN (Syndromes Without A Name) - we are members of Swan and they have provided great support when facing uncertainty.

I would push for an EHCP and investigate different settings. I am afraid that sometimes you have to be pushy and keep chasing things up. Have you heard of ‘Contact’. They used to be called Contact a family and can be very supportive.

Yes Its so hard when there are no answers. With you nephew who has a deletion on chromosome 2 do they know how and why it happened? Me and my partner have had a blood test but havn't had the results yet. The senco at his school is going to apply for an EHCP for him. He's such a funny little boy but just wish he could start enjoying school a bit more. He is making progress but it's very slow and just worried the gap between him and his peers will keep widening. Xx

So glad to hear SENCo is onboard with getting an EHCP. Whilst special schools are not the best placement for all children some children do well because they can have friends who are at a similar level to them and can be happier because they are the more able child in the class rather than the one who is always struggling. Of course other children benefit more from mainstream but it is so individual.

My sister and her son's Dad are in the same position - waiting to see if its inherited or a de nova deletion.

I second Unique: they have brilliant parent guides for different chromosome deletions etc and explain really well the different ways they occur. They can also link you up with other families and have loads of data about specific rare conditions regarding the possible developmental outcomes etc.

Hi. Yeah I will check out unique. Today when I picked my ds up from school his teacher said she's having a few issues with him as he's winding up the other children and hiding their things. Its a new teacher as well as the teacher he did have has now gone on maternity leave. The thing is though he is cheeky and mischievous, that's just part of his personality.

Xx

i think the most important thing is to apply for an EHCP and get that ball rolling as soon as possible. It may be that he will be better supported in a SEN school, but ask the SENCO her/his opinion on it.
Is he doing full days. Maybe he would be happier if you cut down his hours until you can sort out his EHCP?

A lot of chromosome issues they dont know much about. My son has a microduplication in one of his chromosomes. I dont know how much that affected him, as we all have autism, but hes the only one with a chromosome difference

Yeah hopefully they can get him an ehcp as soon as possible as I think he may be able to get more support. It's a good school and the senco is great but unfortunately there isn't enough information regarding these disorders so there is a lack of understanding. I may consider a sen school if things don't start improving however he is only in reception so will see how things go. Would imagine if the gap between ds and peers continues to widen they may struggle to manage so might have to be a Sen school. Xx