When the Autism Act came into being we were quietly hopeful that the services that we desperately needed to access for the eldest of our two sons with autism might become a reality. Sadly the Autism Act came into being at the same as the Coalition Government and any hope that we might be able to see a light at the tunnel were quickly dashed.
I had to give up a job that was both well paid and well loved to look after our two sons. I did so without a backwards glance because I love my sons and see my sons as my responsibility. So if they needed caring for, then as their Mother that was my job.
I had no idea how hard caring for my two sons would be with the passing of years, without any support or back up. Looking after children with autism is hard. But caring for an adult who is also visually impaired, has OCD, mental health issues and who is probably nursing a head injury after been hit by a car when he was 11 years old, that no one is remotely interested in, and who has been seen by no one in our Local Authority for the last ten years, simply because he has the wrong diagnosis is really hard.
At the end of last year we received the dreaded Employment Support Allowance 50 questionnaire for our son. His mental health was so fragile that we dare not tell him that the questionnaire had arrived. Filling that questionnaire became a full time job and I became quite obsessive about it. When it was finally complete and I returned the questionnaire I did not sleep for three weeks worrying about the outcome. I really don’t think I could have found a way or coped having to help my son through a work capability assessment. When the letter arrived saying that our son was in the support group I thought I would feel better, but I know that eventually we will have to do it all again.
Two weeks ago I found myself telling a doctors receptionist that I was at crisis point and pleaded with her for an appointment with a GP that my son trusts in the hope that they could say something or do something to help my son with his ever increasing levels of anxiety. It’s not that they don’t know that my sons have autism, they do. But the rules of engagement have changed at our practice, and now regardless of what you have, you have to see whoever is available on that day. I really wish it worked like that for my son but it just does not. After repeating at least 3 times that I was at crisis point I was given an appointment for the next day with a doctor my son had only seen once before. My son failed to keep that appointment as I knew he would.
I am currently waiting to have my thyroid gland removed. I have a multi-nodular goitre that is now making its way towards my vascular system. I have deferred the operation twice.
I can’t even sit in our sitting room without my son texting me all of the time about how ill he feels. He does not sleep. His sleep pattern is on a rolling. I am pretty sure that the hospital are losing patience with me. I am also seeing a Counsellor myself. It helps talking to someone about my ever increasing levels of anxiety.
I would love to think that eventually my sons would get the support they both need but in my heart of hearts I know that things are probably going to get even worse. We are living in a time where only those who are deemed useful are invested in.
Unpaid carers are not worth investing in ! why would we be? We give our labour freely because we love those we are caring for. It is a Love that any government should not take for granted.