Life on the Spectrum – looking for hope

Life on the Spectrum - Celebrating Autism Mummy & Daddy Blogs

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.)

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12 Responses to Life on the Spectrum – looking for hope

  1. Blue Sky says:

    I can only imagine how hard it must have been to hang on to hope while your son was so ill. To be afraid for him and to have no support for you. Your son’s story is a reminder to all of us to never give up xx

  2. The Rambling Pages says:

    Thanks for posting this, as you know we are possibly at the beginnings of this path with a phobia about dogs and just beginning to hear I don’t want to go out incase we see a dog. This does give me hope and also gives me more of a clue on how to seek help, where to turn etc. Thank you x

  3. This is an inspiring story – you and your son have come such a long way and have travelled a long and difficult road. The fact that you have worked together to make such progress shows that there is hope even in the most challenging of circumstances – thank you so much for sharing!

    • Aspie in the family says:

      You’ve summed it up beautifully when you describe it as “working together”. This is probably what we all do with our special needs children, I think. Deb x

  4. Bronwyn says:

    Thank you for sharing on Life on the Spectrum. I am so glad to her that now he is able to attend and be a part of a school environment. This must have been such difficult time for you. I admire your strength and determination. Your story I am sure with give hope to others!!

    • Aspie in the family says:

      Thank you for hosting Life on the spectrum and for organising some great themes. The theme of hope really engaged with me because when we were in the middle of this crisis with our son, it really did feel hopeless. We felt like we were on new territory and even the professionals couldn’t really offer us a positive story or experience for us to hang on to. I have since found out that they were doubtful that he would ever get back into school. TBH I am quite relieved not to have known this. Deb x

  5. Jazzygal says:

    That must have been such an incredibly difficult time. You have done an amazing job and it’s great to hear that your son can get out and about now. It must have been so hard and upsetting for him. You are right, we do need hope and you sharing your story will give hope to others The steps forward they take can be so tiny and it’s only when we stop, look back and write about it that we realise how far forward they have actually come.

    xx Jazzy

    • Aspie in the family says:

      Hi Jazzy; yes it was one the most challenging situations I’ve been in as a mother. As you say, its only looking back that we realise how far our children have come and how far we have come as parents and families. Writing about my experiences is so therapeutic and has helped to recognise our progress. Hopefully by sharing my story it may help someone else out there who may be feeling tired and isolation. Deb x

  6. It must have been incredibly difficult but what you did for your son was give him a new lease of life which he will thank you for always. Perhaps in his own way, but he and you will be all the more richer.

    CJ xx

    • Aspie in the family says:

      I think you are right CJ. I definitely feel richer for the experience and would like to do something with it to help others, but what I don’t know? As for my son, I hope that one day he will understand just how brave he has been to overcome his difficulties. Deb x

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