Putting it in writing

What I really should be writing it is yet ANOTHER detailed account of ‘a day in the life of my 10 year old’ because getting him support is my top priority and the only way to get him support, apparently, is to write about him. Over and over again.

It has been for about 4 years. 4 years later I am STILL writing detailed extracts about his ‘typical day’, ‘what are his biggest struggles’, ‘what I want to achieve by getting some actual fucking support’!

It is endless and relentless.

What about my eldest child, what about my partner, what about my ailing father, my dying mother. Actually, what about me?!

Every application, waiting list, request for support needs something slightly different, slightly more than the last. There are so may posts about this in various places online. About the broken system and the fact that it is mission-god-damn-impossible to get help and support. How the system and the government is failing our future generation. It is. All of these posts come from families like ours.

Yet how much do we talk about the drain on us as parents, on our family, our friends, our relationships. It is all consuming. Total honesty, if this was a job I would have told my boss to stick it up his ass years ago (and I worked for my last for over 20 years so I have some extreme staying power when the going gets tough).

 The whole situation just feels impossible and I think it’s important to talk about how all of this makes us FEEL.

I feel like a failure. I feel like I am screaming into the ether. WTAF do I need to do for someone to hear me and support me and help my son to exist in this world. Help me to have just a moments peace and a week where I am not filling in another bastard form or chasing up some kind of referral.

His ADHD diagnosis took 2 years. I have exhausted the online resources. I feel like I am doing everything I can possibly do as a parent. So why will no one help me?!

The GP is apologectic. Absolutely lovely in fact and so honest. He apologised for the fucked up system. So we wait. I fill in forms. For a paediatric referral, for audiology tests, for a medication referral (nhs and private), for an EHCP, for anything that might support and help my baby.

I’m neurodiverse myself. I am not going to get it right first time, no matter how hard I try. The EHCP request came back to me because I sent off the word document that I hadn’t signed rather than the pdf doc that I HAD signed. Because, ADHD.

Even when I am organised and I get it right – I sent ADHD documents for medication referral recorded delivery (to the right address) yet a month later when I called to chase no one could find it even though royal mail said it was delivered! So my RSD kicks in and I hate myself for not chasing it sooner. I have since had to send it via email and am still kicking myself that I feel like I have wasted 4 weeks because I ASSUMED recorded fucking delivery showing ‘delivered’ would mean it actually got there!!  

I have spent so much time trying to articulate the struggles my son faces, the way it impacts us as a family, how it is impacting him, impacting his whole class and beyond.

I feel like a failure, as a mother, as a person, as a friend, as a daughter.

I see posts on social media where people highlight incidents of antisocial behaviour and subsequent comments suggesting the parents of these individuals raised them wrong and don’t care what their kids are doing and I honestly worry that one day they might be talking about my child. I have a deep rooted fear that my child will become one of these children and that society will blame me for being a shit parent. When I feel like I am doing and trying everything I possibly can and it’s not working and I am screaming for help and support and no one is there. I am screaming into absolute silence. The silence of another fucking waiting list in fact. Because no matter who I reach out to, who I ask for help and support and tell them I am drowning and I cannot cope and I don’t know what to do………… there is silence.

I have friends who could stand and debate the shit show that is our education and/or NHS system in parliament. They could give evidence, facts, deliberate the benefits of a state school vs an academy, shit all over the secretary of education. I couldn’t do any of these things because I can’t do confrontation, I don’t remember facts, all I know is my child is suffering and I want to take that pain away. Pain they sometimes don’t even feel directly. Pain and suffering that is actually felt by those around them because they are actually oblivious, in their own little world. I wish that I could let my son be, in his own little world, yet living in his own little world gets him into trouble. He needs me to advocate for him and I feel like I am not enough to help him.

I wish I knew how to fight this at a higher level. I wish I could do more for my children. All I can do right now is scream into the silence, fill in the forms, hold them when they feel like the world is against them and society doesn’t accept them and assure the parents that feel like me that they are not alone.

Oh and keep writing and drinking more wine.

We will never feel like we are enough,

but that doesn’t mean it’s true.