Hope is a wonderful feeling. It gives us a sense of looking forward with excitement, anticipation or confidence and can enliven the most mundane of lives. How often do we hope for good weather, hope that our children are doing well at school or even hope to win the national lottery. Believing that something positive can happen, believing that our lives can improve in some way, can help us all to keep going.
For the special needs community, hope is important in helping us cope with difficult or uncertain times. Hearing other peoples stories can inspire us and fill us with hope that we can also look forward to some improvement in whatever situation we find ourselves.
For me however, I did not always have hope. When my autistic son was unwell with agoraphobia and severe anxiety he was so poorly that he could not leave the house or attend school. Instead he withdrew from the world around him and spent his days curled up on the settee transfixed by cartoons on the TV. Trying to get him out of the front door became impossible. On top of this, he also struggled to interact with everyone, including me, and during his lowest moments he would be found crying and pleading for help. It was heartbreaking.
Unfortunately it took months before we were provided with psychiatric advice. Those ‘waiting’ months felt like an eternity, trapped in a house with a poorly child who was so overwhelmed with anxiety that his autistic behaviours worsened. I felt useless at not being able to reach out to him and I began to despair that our son would ever recover. I was also feeling lonely having not yet found any support from the autism community.
Eventually we did see a psychiatrist who prescribed anxiety medication which lessened my son’s anxiety sufficiently for us to be able to re-engage with him. This was key. By being able to break down the ‘wall’ between him and the rest of us we could start to help him overcome his agoraphobia by introducing the idea of leaving the house. After mentioning this idea a few times, I then waited till he was as relaxed as possible before I encouraged him out of the house. It wasn’t easy. My son was still anxious but with lots of encouragement we managed to get him out of the front door and walk down the road. We then repeated this walk several times over a number of weeks until he felt comfortable enough to extend his walk to the corner shop. Eventually, with a lot of praise and rewards for every bit of progress he made, we helped him to get to the local park, the library and our town centre. With every little step he made I got a glimmer of hope that he would become well enough to return to school.
But it was painfully slow. Some weeks, he made no progress and could not leave the house and once again my sense of despair would return. It didn’t help that I knew of no-one who had gone through this with their child. Even when I looked for reassurance from the professionals, they couldn’t give me any indication as to whether my son would recover or not.
Its not that I wanted a definite answer for there is no easy way to help a child to recover from mental health illness. Whilst anxiety medications had some affect, it wasn’t a panacea that cured his problems in the same way that antibiotics get rid of a sore throat. Caring for a mentally ill child requires extraordinary amounts of patience, encouragement, gentleness and strength as well as an abundance of time. Nevertheless I wanted to know whether it was possible for children like my son to regain a quality of life. I needed a dose of hope to help me find the strength to continue to help my son.
As it was I had to look for hope myself. By accepting the setbacks and recognising the smallest of achievements I was able to hang on to the hope that my son would eventually recover. And though it was very much one step forward and two steps backward for a long time, my son did make a good recovery. Two years after the initial onset of his illness my son is now happily settled in special school and he is able to go out and about a bit more though his ASD remains a constant challenge.
(This post is a contribution to the weekly blog hop, Life on the Spectrum, hosted by At Home Mum. This week’s edition is on the theme of hope.)