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Newbie - Where to begin... - Carers UK Forum

Newbie - Where to begin...

Tell us a bit about yourself here.

I have been a parent to children on the ASD spectrum for 6 years now and around 4 months ago my husband suffered a severe stroke which has thrown our normally chaotic life into a blistering whirlwind of turmoil.

6 years ago I was a wife, we had a fairly normal life socialising regularly and misbehaving (as you do) I gave birth to my first child and very shortly after my second child came along quicker than expected. When my daughter was around 2 years old I became concerned that she was reaching mile stones quite some time after her peers and I started to notice my son was following a similar pattern. By the time she was 3 our house once so peaceful turned into a ticking time bomb at the slightest thing and going out was turning me into a gibbering wreck... But there was 2 of us then and although my husband worked full time life went on through our diagnosis of both children and answers helped curb the frustration of our labelled "naughty children"

Like a bolt out of the blue my husband suffered a stroke 4 months ago from which he has made a staggering recovery in a short pace of time but now instead of worrying about the scenes going out I now have to contend with wheelchairs, accessible toilets, blended diets and a whole new series of what I like to call them (positive thoughts and all that jazz) ADVENTURES!

So.. my once confirmed role as wife turned to gibbering wreck parent and now to all round skivvy, carer, mum, cleaner and lastly wife and somewhere in by gone days fun loving no worries female.

Anyhoo thats me, finally admitting I doing this but have no idea how and getting through clinging on by the skin of my teeth on a low income staring across the room at my beautiful children playing on the floor and my wonderful husband asleep in the chair and wouldn't change a thing :D
Hi Pauline,

Are you getting any help at all? Do Social Services know that you have three carees now? My own (second) son was also a "naughty child" for eight years, before a doctor outside the NHS said "Your son was brain damaged at birth, didn't you know?". He's now 35, and just reading your posting brought back some of the difficulties of those years. He was thrown out of normal playgroup, went to a special needs playgroup, then a special needs class in a normal primary school, before moving to a special school at the age of nine years. Some misguided professionals don't want to label a child early on, but they don't realise that without a label it's almost impossible to get any help at all. My son received Disability Living Allowance at the age of 3, he tried to climb the shelves next to the fireplace when being assessed at home, that sealed it for the assessor. If you haven't done so already, contact the Carers UK helpline to make certain that you are getting all the benefits which you are entitled to, then contact Social Services for a needs assessment for your husband and children, and a Carers Assessment for yourself. Don't be too proud to accept help, and say "we are managing, thankyou" because the more help you accept, the easier and happier life will be for all of you.