Help

[TashaTudor]

Hi all
I have a teenager with asd/pda/spd/adhd/nid and chromosome mutation who is in gcse year but won't be doing them. I'm struggling with the hopes and dreams I had for him and worried about what the future holds.

I also have a 2 year old diagnosed with autism and undergoing assessments and genetic testing for angelmans syndrome, she also has severe allergies and can't walk and is waiting on audiology for her hearing. It's breaking my heart watching her peers doing so much, I'm part of a group where all our baby's were born the same month and its so lovely watching them grow but now they're potty trained, knowing numbers, drawing and climbing and running and all I can say is 'well she can't do anything but she's happy' and as with my son my hopes and dreams for her are out of the window. I won't be taking her to ballet class or watching her in the school play or helping with homework. It sounds stupid that my hopes and dreams are so basic when written down.

I also worry about myself, I have no family, no real friends nearby, is this it? Obviously I will do everything for my children but is every day going to be the same? How do I find something for me? I can't work as ds is in school part time and dd only does 2 days nursery, on top of hospital appointments (this year has been 3 heart scans, 1 brain scan, 6 xrays, 3 allergy attacks plus about 10 check ups) plus to be honest I think any more to think about will kill me off.

I don't know what I'm asking, I'm just exhausted and caring 24/7 for a special needs child since I was 21 I feel like it's too late to do anything for myself and I don't want much, just something to do that I can be proud of.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team (or adult social care for DC1 depending on his age) for DC.

It is worth contacting Home Start to see if they can support you.

Do both DC have EHCPs?

Why is DS in school part time? Is he still compulsory school age? If he has an EHCP, have you requested an early review?

Thanks for your reply, both have ehcps.
DS was refused a school place in every school in 3 counties, this is the only school that will take him. It's an unique school I havent seen anywhere else and the only one who will take him. Special school can't meet his educational needs and mainstream can't meet his asd needs, autism specialist school did not go well for him nor the asd units in the two mainstream we tried. He was permanently excluded from age 6-9 and its only now in year 10 he's actually attending school so I really don't want to rock the boat!

I will contact home start thank you

DS needs provision otherwise than at school as well as part time school, so DS still receives a suitable full-time education. You should request an early review of the EHCP. IPSEA has a model letter you can use.

In the meantime, the LA must still provide a suitable full-time education under section 19 of the Education Act 1996. Depending on how part time part time is, he may not be classed as receiving and full time education and you should request section 29 provision. IPSEA has a model letter for this too.

Thank you, I will do that, he's around 10 hours a week from being full time

If DS is attending school for 22.5hrs a week, that would be considered full-time for section 19 purposes. Sorry, fat fingers. My pp should say section 19 provision not 29.

But you should still pursue further provision otherwise than at school via the EHCP.