So drained and alone

Hello, my name is Holly, I care for my gorgeous daughter who is nearly 4, she has severe non verbal autism. I also am mum to two boys 19 and 14, my 19 yr old is doing fab, great education and relationship, so helpful. My 14 yr old son is a wonderful boy, normal hormones ect.

Anyway, I feel sooooo trapped and drained and feel terribly guilty for even thinking this, how could I?
My whole life revolves around being mum to all 3 and carer to Rose my daughter, I’m so exhausted, but find it hard to let go and let her go to anyone else. My husband has checked out emotionally and physically working crazy hours, though we do need the money :frowning: can’t win as I can’t work to earn more yet I’m so alone in everything with my little girl.
Rose is hard work, she has many issues, food related, sensory, noise, no self help skills, self injury and aggression, Nappies, pica.
It’s full on worry and care, as well as lots of joy as she is my little darling too, but due to lockdown and now summer hoildays im extremely drained and hopeless, my days are all the same, rigid routines and I don’t know who the hell I am anymore.
I have marriage problems, terrible guilt I don’t spend enough time with my 14 yr old or so enough for my daughter… and I’ve totally let myself go, gained a lot of weight.
Tired of the fight with Local authorities for schooling, fighting with social care to help us with home adaptions, specialist furniture.
Sorry I’ve rambled on x


Hi Welcome

You are putting into words how a lot of us carers feel.

You have a lot on your plate. I can see how your four year old would take a lot of your time and attention.

Is she starting school in September…if so that would give you a bit if a break.

There is always guilt when you have so many people to look after.

I have two boys one aged 24 with autism and the other one with learning disabilities.

Have social services offered you any support? I think the fight for education and services is one of the hardest things to deal with.

Its imoortant to try and grab a small amount of time each day even if its at home to relax…listen to music, read or draw whatever you enjoy to de stress. Time outside each day for a walk if possible is important to reduce stress too . If you can’t get outside have you tried a dance routine at home for example zumba for twenty minutes. They are fun.

Holly, welcome to the forum.
You sound very lonely, there are others here who can help find what you need. My son was brain damaged at birth, only there was an 8 year cover up when I was continually blamed as a bad mother!! Especially stupid when my eldest son exceeded all his milestones, and I used to run a Brownie pack of 24 girls single handed!!!
Lets start with money first. Are you receiving Disability Living Allowance at the highest rate?
Are you aware of the Family Fund?
What contact have you had with Education so far?
Are Social Services helping you?

Your 19 year old is a man legally, he needs to stand on his own feet and help maintain the household he is living in! Does he have jobs that are his responsibility, like cleaning away after a meal and putting the dishwasher on? Keep his own room tidy?
The 14 year old shouldn’t be far behind in terms of jobs. Maybe mowing the lawn, putting the washing on? There are life skills both of them need to learn!
Maybe each of them cooks a meal one evening a week, including husband?
Have you had any counselling?

Hi Holly and welcome,

I care for S who is now 28 and has autism. He is considered non verbal too but learnt to communicate with PECS (exchanging symbol cards) when younger and now talks with an electronic communication aid (similar to Lost Voice Guy.) He does say a few words too, but only those who know him well understand him.

I am not surprised you are exhausted, caring for someone with autism 24/7 without a break can be tough.

Does you daughter have an Education and Health Care Plan in place? Where are you at re a school place etc?

I totally understand your reluctance to let others look after her, but it’s easier to cope after you have had a break.

In the future, it might be worth making her a Communication Passport - there are many templates for these online. It means you summarise her main likes, dislikes, needs, what her communication means, triggers for her behaviour and how best to help and support her (use bullet points.) You can then hand the info to anyone supporting her - such as nursery or school (or even her Dad!)

Have you attended the Early Bird course with the National autistic society or similar? I used to run Cygnet courses for interested parents at might school and not only was it useful to learn more about autism, strategies, help available but also to meet other parents dealing with similar issues alongside family life.