I’m sitting here in tears and I wish I knew what to do. I wish there was someone I could phone who would have all the answers. I’ve been dealt a hand in life that’s too much and I can’t do it anymore.
I’ve posted about my children before, I’m bored of even typing it now. They are just turned six and nearly four and both of them are diagnosed with autism and global developmental delay. The oldest is functioning in mainstream with support and the youngest will most likely need to be in a school for children with special needs.
I’ve just spent the day on the phone to the paediatric receptionist trying to get hold of the doctor who was supposed to phone me back today. She never did. Just prescribed something different to what I asked for under the guise of my child being discharged. I wrote another thread on that. There’s no help for children like my daughter. Children who have autism that doesn’t resemble the routine based sensory seeking or avoiding child. Frankly my daughter resembles somebody more akin to disabled by severe brain damage.
My mum came over today and the first thing she told me was of a colleagues autistic adult child who is going to live in a residential home five days out of seven. I usually try to think day by day but it just hit me that it will be my child one day. My child who may never talk properly. Currently she speaks gobildegook with a couple of random sentences repeated over and over. Such as, ‘the sky is a carrot’ and ‘dragons everywhere’. She has very little understanding. Doesn’t turn when called, can’t follow instructions. She mostly just stares out of the sides of her eyes while making repeated groaning noises.
I’m fed up. Fed up of fighting with medical professionals just to even attempt to get a call back. Fed up of the ridiculously long wait times to be re referred for services that we should already have access to. Fed up of the waiting for a statement that seems to be more delayed every week. Yes it’s just dandy that my child is eating sand and mud in nursery. Her arse is on fire but no worries. We will just carry on waiting because if I say anything she might be expelled.
My son has literally just peed himself because I didn’t get up immediately to accompany him to the toilet. He can use the toilet but has such severe anxiety that he can’t go by himself. Yet there is seemingly no support for that either. Or his extreme anger issues. Or the fact he’s years behind with his schoolwork.
It’s just shit. Some days I honestly want to walk out because I haven’t got the energy to argue and fight for every scrap of provision for them.
Is it going to be like this forever? If it is I can’t do it.
I have a five week old baby as well and the fear that she could be the same or worse is terrifying. It’s not the diagnosis as such, it’s the everything else that comes with it. The being abandoned without a clue what your doing and no support.
I just can’t do it.