In the first part of a three-part series, our comms volunteer Sarah talks about her experiences raising her son, Jamie.
By the time my son’s severe (mostly non-verbal) autism became clear at age three, the health issues that had affected me from age 18 were beginning to return. I had suffered from what was eventually diagnosed as having M.E and, many years later, PoTS.
I was healthy until a bout of flu at age 18, and I was left with severe fatigue, muscle pain, palpitations, and other symptoms. I improved after two years and, assuming I’d fully recovered, went back to a normal life, including employment, marriage and falling pregnant. I would never have foreseen what lay ahead, which is just as well.
My illness returned after a series of bad colds and within a relatively short period I became housebound. My marriage had broken up and I was primarily and terrifyingly responsible for my severely disabled child.
Having no speech meant he expressed himself in very challenging, ways such as biting his hands, punching his head into a wall repeatedly, and throwing items. I had little or no energy; he was hyperactive and had no sense of danger. He also had no capacity to understand anyone’s feelings.
As anyone with limited energy knows, pacing is so important, and is the main reason I recovered first time around. Caring for my son made it impossible; he needed watching 24/7 and had no concept that Mummy needed to rest. He went to his father’s home at weekends, plus I had carers to help, but only for a few hours a week.
I was on my own with him for an hour after school while he charged up and down the stairs repeatedly while I begged him to stay put, trying to bribe him with a bag of food for a ‘picnic’ just to get him to stay in one place for a bit because I physically couldn’t walk up the stairs again.
But perhaps worse than the physical difficulties were the mental and emotional struggles. Being a carer of any description is incredibly isolating; I felt so cut off from the world and trapped in my bubble of trying to survive.
I was very depressed, even suicidal at times, although I didn’t want to leave my son. I spent hours when my son was at his special school laying on my sofa crying and – sad to say– dreading his return. I loved him but I was totally out of my depth.
I believed that no one would understand my situation because people who had autistic children were probably not chronically ill, and people who had M.E or PoTS or other energy limiting conditions were probably not carers for disabled children. But, with the benefit of hindsight, I am sure there were people who could relate in some way.
It was bleak. However, things did improve, although not without more challenges and a tough decision. I will share some tips I learnt along the way in case this is useful to anyone who is struggling:
Accept your limitations: This is so important. But it’s very hard when you are a parent, especially to a disabled child who is probably dependent on you for much longer. I didn’t truly accept my limitations until my ill health landed me in hospital.
At that point I knew I couldn’t cope as things were. I learnt it was okay to have new expectations of myself as a parent. By prioritising my health at that time, I was caring for my son too.
Ask for help: I told my son’s social worker that I was unable to cope. She increased Direct Payment hours, so I had more support. Eventually we had a meeting with my son’s father and his partner, and they agreed to have my son four days a week, which eventually went up to five and six as my health declined rapidly after my hospitalisation.
I accessed counselling and was able to offload my pain and struggle, which helped me to feel less isolated, as well as to work through my feelings about my son and being a disabled parent.
It isn’t always easy to access various forms of support, but it is out there, and it is important to ask for help, whether that is from family, friends, social services, occupational therapist, your GP, charities, or a counsellor. Chatting to other parents online may help with the feelings of isolation, even if they don’t share the entire experience.
Make time for sleep and/or relaxation. Not easy, but when your child is at school, at respite, with family or a carer, take some time to sleep/relax, meditate, pray, or anything else that helps you cope a bit better.
Sleep is so often lacking when caring for someone with disabilities. My son often didn’t sleep until the early hours, and I had to prioritise sleep when I could, just like you do with a young baby.
Be aware of your breaking point(s). Know what is likely to tip you over the edge, whether it’s no sleep, severe pain, your child throwing things, self-harming etc.
Do what you can to keep yourself both safe, such as calling a friend or neighbour, utilising ways to manage specific behaviours, or leaving the room (if safe to do so). Prepare yourself for managing particularly challenging moments in advance, so you feel less out of control and more equipped to cope.
Be kind to yourself. Guilt seems part and parcel of being a parent. I felt immensely guilty for years because I believed I’d failed my son. But it was no one’s fault, just a horrible situation. We made the best of it; my son loved going out with carers, but there’s no denying it was tough.
If you’re going through similar, know you are doing the best you can. Any stressful situation has potential to bring out painful and even extreme thoughts and emotions.
Counselling taught me to be compassionate towards myself and allow myself to grieve my health and my son’s disability, as well as cherish the good times and special moments when we really connected with each other.