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My sons 'A' and 'H' - Carers UK Forum

My sons 'A' and 'H'

Tell us a bit about yourself here.
I am a single parent of twin sons aged 3
They have learning disabilities and a diagnosis of Atrx syndrome.
My wife and I live apart it became very stressful for us both.
Currently my wife remains in the family home with 2 daughters aged 15 and 20. They are sometimes reluctant to her their mum with out children when they are with her.
Currently the boys are both with me all week. There is no written arrangement but the are in my care at least half of not more of every week.
We both need help carrying for our boys.
I would like this request for help to benefit my wife too.
And perhaps maybe we can save our marriage.

Regards

Edward

edited by moderator to protect family's identities,
Welcome to the forum.
Please can you change your forum name to protect your anonimity, and perhaps change your son's names, or refer to them as "the twins"?
I'm dismayed to learn of your situation.
What have the doctor, hospital and specialists done to arrange help for you?
Are you in touch with Social Services and Education, for some Early Years work?
Hi & Welcome Edward

I just had a quick read of you son's diagnosis and it's incredibly rare.

I hope I'm reading the right one.

If I am there appears to be a support facebook group.

Maybe you could pick up some helpful info.

https://contact.org.uk/advice-and-suppo ... isability/

https://www.facebook.com/groups/163849465337
Hello Edward and welcome to the forum

Sorry to hear you're in such a difficult situation. You don't mention getting much support which must makes things harder. You should be eligible for some, have a look through our advice and information pages and check what you're entitled to:

https://www.carersuk.org/help-and-advice

Best wishes

Jane
Hello again Edward

Further to my forum post to you, I wanted to highlight our Helpline who can also advise you on benefits, assessments etc. Here are their contact details -

0808 808 7777 from Monday to Friday, 9am – 6pm or by email advice@carersuk.org

Best wishes

Jane
I forgot to say yesterday that my son was brain damaged at birth, but there was a cover up (untrained midwife without supervision, baby born back to back, not breathing) so for eight years I was labelled a "bad mother"! Somehow, they completely ignored the fact that my eldest son was well behaved and well spoken. When I told doctors etc. that I used to run a Brownie Pack of 24 girls, that too was ignored! I was on my knees with exhaustion, but one good teacher realised that my son's problems were not my fault, and on the first day of term when I took him into school ordered me to go home and go to bed. The first kindness and understanding for a long time. I later went on to do a degree in Business Studies.
The assessment stage was awful, don't feel you have to cope, stop being Superman and Superwoman and start yelling HELP to everyone, to save you sanity and your marriage.