Does anyone else have literally no family or friend support?

[Mumof3premies]

So little back story
my 2 year old has multiple health issues including kidney disease, bowel problems, a heart condition, he was very prem a& catches everything literally! He had had 9 surgery’s, sepsis 7 times, meningitis, pneumonia, group b strep, NEC! You name it he’s had it!

so next Friday my son is due his 10th surgery again no support or offer of help from either of our families so I have to go with him alone AGAIN because nobody will look after our other children.

we have been begging for professional support as he is really delayed and shows every single typical sign of autism and global development, he doesn’t talk and is averaging about 9-12 months and he is 27 so they have put it to a panel and he has been accepted for speech and language therapy at the most intensive level, they also have done referrals for portage and have asked the development team to start the process for autism and to assess him in their team!

this was a massive achievement for us and I thought our family would be happy for us and that we are going to get some support but no all we have had is judgements and comments like we are pushing for a name on him! It’s really upset me!

I’m sorry there isn’t anyone who can care for your other DC and your family isn’t supportive more generally. I’m not in your position, but some things that may be helpful in the coming months:
-contacting Home Start to see whether they can support you.
-if one hasn’t already been requested, request an EHCNA - IPSEA has a model letter.
-if OT isn't involved already, seeking an OT referral and a home OT assessment.
-social care assessments - a carer’s assessment for you and an assessment via the disabled children’s team for DS.
-speaking to your local young carers service and Sibs.

We have just had a referral for home start but there is a wait, the other children are under young carers just they are going for a 1-1 next week!
we have an ot already thank you for all this advice xxx

Worth looking to see if there is Portage in your area too and applying for DLA if you haven't already.

We have been accepted by portage but there’s an 8 month wait to be seen and he has had dla since 3 months old, thank you xx

You are impressively organised!

He has had over 65 appointments so we are on the ball! Xxx

It is brilliant you are already receiving/waiting for some of the support. Do look at an EHCP and social care assessments.

Some other suggestions:
-in some areas special schools have specialist playgroups. If you have one nearby, it is worth contacting them.
-do you need to look at a DFG?
-have you applied for any grants you are eligible for?
-do you have a blue badge (depending on DS's needs, he may be eligible now or you may have to wait until 3)?

It’s no consolation to you, but most mothers of SEN children I came across when DC were growing up, got no support from family either!

One mother said to me of her parents

”Well, I get to choose their care home!”

Many extended families seem to be in denial!