ASD: on being a special-needs single parent

“April is the cruellest month, breeding

Lilacs out of the dead land, mixing

Memory and desire, stirring

Dull roots with spring rain.” (T.S. Eliot – The Waste Land, 1. The Burial of the Dead)

I have been feeling very afraid this evening. Over the past few days, I have felt as though a fog has wrapped itself around me, and I’ve been saying flippant things, not caring about swearing. “Mummy, why are you swearing so much today?” Daniel asked me this on Sunday and, although I knew I ought to say, you’re right, I’m sorry, and reign myself in, somehow I couldn’t. I was looking out of this fog, and I was not aware of feeling hungry, but I was putting a lot of food in my mouth and my mind was saying, you need to lose weight, you’re fat, look at the state of you, you ought to quit all this weightlifting and Muay Thai and running on the treadmill, you don’t even know what shape you are and what clothes fit you anymore…

I wanted to scream, “I’m not coping!” And then I thought, don’t be ridiculous. This too shall pass. It did, after a lot of cleaning up in mum’s kitchen while she and Susie snoozed, and I felt jealous and as though I was falling apart, but the cleaning up and making order helped me to contact my capabilities, and so I felt better. Slightly.

This evening, after the Playscheme and coming home to the laundry and the washing up and the cooking and the grey, drizzling weather outside the windows, and then writing about it and feeling slightly better, and a visit to mum’s and cuddles with the dogs and her going for a snooze and me putting out the recycling and the rubbish, and Marietta’s bins as well, I felt more optimistic about things once again. However, as the day wore on, while I was cooking dinner and clearing up, the feeling that I want to cry, but can’t release it, and the sense that I had red hot pokers in my heart and in the pit of my stomach, kept mounting and I just wanted SILENCE and OBLIVION.

That is why I took heroin. I didn’t want to live, and I didn’t want to die; I certainly didn’t want to feel. Whilst sitting in the living room with Daniel I feel panicky; I consider writing letter to the doctor. It would say something like:

Dear (Doctor’s name),

I can’t come and see you because I haven’t got time, and I’ve been postponing coming anyway, because I need the veneer of being able to cope. I haven’t been able to persuade the Local Authority to send my son to school since the case worker recommended a different school last year and the Senco agreed, and the mainstream school let him leave at the beginning of last July.

I thought that the case worker would find my son a school, but he didn’t and, when all the other children went back to school last September I realised that we were in difficulties. I tried to communicate my stress and the effects of the situation on my son, myself and our family, and they took no notice.

Over the past eight months it only has my son not been found a school, but the mistakes that have been made beggar belief. An hysterical mainstream tutor with no experience of autism colluded with a babysitter, made video footage of Daniel and, when I complained to the Local Authority and to the tuition company direct, their responses have been to abdicate responsibility. I am convinced that the the lack of care for vulnerable children such as my son on their part should be investigated and corrected, but it seems that, as the parent of the child concerned, I have the least power.

The social worker seems to have faded into the mist; none of the agencies which purport to offer support or respite have provided any help, though I have been trying to contact them for years now. My own mental health has declined and I am now feeling desperate. My 72 year-old mother has COPD and is going on holiday at the end of this month; my son’s father says that he is on a fixed wage and therefore cannot offer any more financial assistance than the basic rate of maintenance that he pays monthly; I have asked the Local Authority to reimburse my mother and my childcare costs (using my benefits and mum’s pension) and they have not come back to me for months now.

As you know, I am a brain injury survivor and I am on medication for depression. My sensitivity to hormones and to progesterone in particular rendered me suicidal last month, and thanks to being on medication I made the right decision to stay at my mother’s during this episode. I dread a recurrence of this as I am already plagued with thoughts of self-harm simply to try to offset the mental and emotional pain I feel under this much stress. I go to the gym as often as I can, as I have found, over the past two years, that exercise helps me to cope and enables my medication to work better.

I am revisited daily by eating-disordered thoughts and I have been bingeing on chocolate and other sugary food. I am almost 20 years clean and sober but, so often at the moment, I find myself missing heroin because I don’t want to feel this pain and this pressure any more.

Please help me. I have put this in a letter because there is no way that I could sit down in front of you and, in the space of an appointment, articulate the state of crisis I feel I am in. I only hope that, by writing this down, it has helped to alleviate some of the pain and pressure in my mind, but that never stays away for long. I am tired all day and can’t settle at night; I wake up exhausted and the day drags on. My son’s behaviour is challenging due to boredom, anxiety and isolation from other children and a curriculum.

I feel guilty because I am unable to persuade my son to do some simple learning activities, and my anxiety grows, as I realise he is falling farther and farther behind academically. I am worried about his anxiety as it might be a barrier to him engaging in anything to do with school or learning, and I am wondering whether I need to get him a referral to Camhs. But I can’t face the stress of trying to get him to see a doctor, as he’s scared of doctors and gets so distraught and aggressive that it takes all my energy to reassure him and stay calm.

In December I put my own Fluoxetine level up by 20mg per day and Dr. Babbajews seemed not unhappy about this when I saw him. However, I do not feel as though my medication is working, and this situation seems like it is never going to end.

Please forgive the audacity of a letter, but I am desperate – I am writing this because I can’t fall apart in front of my son. I have to be strong for him.

Yours sincerely

It is now after 10:00pm and I shall try and sleep now. I also hope that sleep will help to alleviate this dark shadowy fog on my mind, as I genuinely don’t know which way is up, or forward. As far back as I can remember, reading and writing have given me solace, have enabled me to release some of the pressure from my head, because I am in mental pain most of the time and I can’t see clearly.

I only hope that this can communicate that I feel I need help.