13th to 20th of June is Carers’ Week in the UK. In this blog post, Debbie shares her experience of caring for her son who was diagnosed with autism. She reflects on the journey so far, the support available to her and her son, assumptions she had to fight against and how it helped her become a stronger mother.
It’s Carers’ Week this week in the UK, an event which is aimed to increase awareness of the work being carried out by millions of carers across the country. If you are a carer or know someone who cares, then you probably already know what is involved in caring for someone. To some people it may seem that care is what happens when your elderly relative goes into a home. But care is more than that. Care is also something that you may be faced with as a result of illness, disability or accident of your husband or wife, child, friend or a neighbour. In other words, care affects everyone at some point in their life.
So what does care involve? Well for me and my family, this has meant adapting to my son’s ASD (Autism Spectrum Disorder). On a daily basis, this involves us thinking about how we communicate with him, what he eats, what clothes he can tolerate, his response to noise, temperature and touch as well as helping him with his personal appearance and hygiene.
Going out requires another set of considerations, such as helping him cope with a new place and a change of routine and any sensory difficulties he may have. And whatever we do, wherever we go, we have to be observant to signs of meltdown which we can respond to to prevent a full-scale crash.
There are probably loads more things that we do that have so become our norm that it is actually hard to recount what we do. Indeed, it is not until we meet a boy of his own age that we realise the extent of our son’s difficulties and the impact on our family.
But it was my son’s mental health crisis that brought home to me how much more challenging it must be for those who care 24/7. For my son, his mental health problems rendered him completely unable to leave the house and attend school. For me this meant that I was suddenly faced with the added responsibility of helping him to overcome his agoraphobia. Yes, medication helped to lessen his anxiety but it was not the immediate answer to his problems. Instead it took months of gentle persuasion to help him out of the front door and beyond. Sometimes he made progress, sometimes he didn’t, sometimes he got worse and many a time I wondered if he would ever recover.
At the same time, I was also having to deal with the sudden influx of professionals who had suddenly decided to take an interest in my son’s situation. And yet not one professional asked me how I was doing, how my husband was doing or even how our other children were faring in such difficult circumstances. Instead I had to tolerate unsympathetic comments from some professionals who clearly had no understanding of the work that I was doing in my own home.
And it was difficult. Being stuck in the house caring for someone who, at the time, could hardly get up in the morning or even hold a conversation, was isolating. I barely left the house and sometimes went many hours without talking to anyone. Instead my days were spent encouraging my son to re-engage with life; to get up, to eat at normal times, to get dressed, to talk to the professionals that visited us (which he rarely did), to play a game with me or to watch television together. And with the quiet atmosphere that I created in our house, he slowly recovered.
But as he recovered, I found myself slowly spiralling downwards into a state of exhaustion and anxiety. My health was not helped by our continual battle with the authorities to provide an appropriate education for him.
On top of this, I also felt great frustration as I was unable to take up my post-graduate studies or pursue any sort of work. I even gave up a job at one point. Of course there wasn’t any question about giving up on my own aspirations in order to care for my child, though I continue to worry about the impact this has on my employability and future financial security.
You may ask why didn’t I ask for help and the answer to this is quite simply it didn’t occur to me to ask for help. You see, I didn’t have the time or the energy to think about ‘me’ as I was too busy looking after my son and fighting for his education. In any case, I’m not sure what could have been done to help us. You see my son was so frightened of other people that he was physically unable to leave my side for many months. It really was a case of just getting on with it.
The problem with this is that, without any sort of break, you start to find yourself becoming more and more exhausted and what good is that when you are caring for someone. Looking back though I think the thing I needed most was having someone to talk to who understood my situation but at the time I didn’t realise I needed this.
Fortunately for me and my family, my son recovered from his agoraphobia and two years later he is now in a specialist school. As for me, I am starting to slowly recover though my caring duties still remain as I continue to manage his ASD as well as his sister’s aspergers. It has been a long road for me and my family, yet I can honestly say that through my experiences I have discovered a strength and stamina within me that I never knew existed. As a result I have become a stronger mother, one that is not afraid to advocate for her children.
This post was originally published on Debbie’s blog http://www.aspieinthefamily.com/ and has been reproduced here with the author’s permission.
Read more posts in our series on Carers’ Week.