QUALITY OF LIFE: What does it mean when your child has Autism?

Andra and her family live with Kyle’s Autism and Epilepsy in a tough environment for services, which brings the concept of Quality Of Life sharply into focus…

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Quality of Life can mean a lot of things to society as a whole. For most people, it means a good job, nice house and car, family and money for luxuries, and then you are pretty much all set –  right?
Well, for families living with a child or children with disabilities, that is all turned on its head. Don’t get me wrong – we all want these things, who wouldn’t? But we need other things, that will provide a necessary quality of life for our children and families as a whole.

Quality of Life can mean a lot of things to society as a whole. For most people, it means a good job, nice house and car, family and money for luxuries, and then you are pretty much all set –  right?

Well, for families living with a child or children with disabilities, that is all turned on its head. Don’t get me wrong – we all want these things, who wouldn’t? But we need other things, that will provide a necessary quality of life for our children and families as a whole. We need to have the necessary services from the HSE to be put in place, to lessen the burden on families. The lists of children who need help seem endless. Parents are forced to go privately for things like Speech and Language Therapy, Occupational Therapy and Assessments.

A family living with a child with disabilities will spend any spare money they have on therapies, in the hope that it will improve that child’s outcome and maintain their quality of life in adulthood. This is not a luxury, but a necessity in the lives of many families. The lack of these services (or indeed the money to pay for them), can have a major effect on quality of life for these families, and not for the better. Parents worry that they are not able to do enough for their child, and the guilt that comes with that can cause stress, depression and in some cases burn-out.

The other issue here is many people have to give up their jobs to care for their loved one. They may become dependent on the state, in which case financial circumstances can quickly deteriorate. People can easily become trapped in a social welfare system that is designed to make it as difficult as possible to access any supports for their child and themselves. That can have huge implications, reducing quality of life to mere existence. How can that be acceptable for the family as a whole?

I have a son called Kyle who has Autism and Epilepsy. We have been living with this diagnosis since he had his first seizure at the age of two. It turns your world upside down in a way you had hoped would never happen, but it has and we have to get on with it. One of the first things you think of when you are given a diagnosis for your child is the kind of quality of life will they have in the future. You worry. What will happen to him when we are gone? Will he live independently or need care? The fear of the unknown, and the what-ifs, are crippling at times. You have to make a choice for your own sanity, to live in the here and now. That doesn’t mean not making plans for his future – it just means trying to cope as best you can, and look at life as positively as possible. In my case, it means enjoying my son, and letting him be the child he is and not who I may want him to be.

We celebrate things that he does, that would be minor to a neurotypical child, but is a big deal for him. We take joy wherever we can find it – let’s face it, the alternative of constantly looking at the negatives of what he cannot do are just too overwhelming to deal with. God knows, we hear it often enough from professionals and their reports, that have a habit of knocking you sideways when you least expect it.

There is something about having the negative things written on paper that seems to take the wind out of your sails. It suddenly seems more real, more permanent than the spoken word. These reports make you fearful for the future – I don’t want him to be forced into a regimented care system where the things he enjoys are limited to him or he is put in front of a TV to just sit and be quiet for the rest of his life. Or worse, to be abused by people who care for him (and I use that term in the lightest sense) – he deserves so much more than that, and so does anyone living with a disability. They have the right to a good quality of life, in which they or their families can have an input. It’s really not a big thing to ask – we only want him to be able to live his life with dignity and respect, and have his voice heard. That is what we are working towards.

There are a lot of things that can improve quality of life for my son. Therapies are certainly among those, but education about disability in society is another one. This is vital for changing attitudes. People are still fearful of disability – maybe it’s because they don’t know much about it and are too embarrassed to ask for fear of upsetting you, or maybe it’s because it doesn’t affect them so why should they care? But they should care – disability can happen at any time to anyone and being blasé about it is just not good enough.

There are changes happening that will help in educating people about Autism. An example is Adam Harris and AsIAm (Autism Spectrum Information Advice and Meeting Point, www.AsIAm.ie), who are rolling out an education program in secondary schools around the country and it is having a positive impact on students. They are now extending it to the work place too, and I believe this type of initiative will make for a more inclusive, tolerant society as a whole. It’s all well and good to talk about awareness and acceptance, but it starts with education – only then can we hope to bring about change and give children and adults with Autism an acceptable level of quality in their lives. The following video gives a short explanation of what AsIAm offers:

Schools have a part to play, in providing quality of education. Kyle is lucky enough to attend Solas at Scoil Niocláis Naofa, Dunlavin, an Autism Unit attached to a main stream school. It caters for 12 boys, aged from 6 to 11 years, with varying degrees of Autism. He has been in this school for the last two years and we believe it’s the best decision we’ve ever made to send him there. He has flourished in a small setting, with more one-on-one support and teaching than he was getting in mainstream school, and it has made a huge difference to his quality of life. He is taught life skills, like going to the shop, cooking, cleaning up after himself and more.  He takes pride in being able to do these things and that in turn makes us so proud of how far he has come.

However, not all schools are as progressive as Solas and that is something that the Department of Education needs to address. I believe that there should be more specialised training for teachers in the area of disability, and that it should be mandatory, as so many children are falling through the cracks because of inadequate training or no training at all in many cases. Teachers are often not equipped enough to deal with it, through no fault of their own. Solas Dunlavin is a shining example of how things should be done – however, they need funding just like every school, to provide therapies for children with Autism, as you can see in this video:

Finally, the one thing that I think would improve quality of life for all families of children or adults with a disability is to make accessing services, schools, entitlements and benefits easier for them. It’s not the coping with the disability that we find the worst thing to deal with – more often than not families have accepted it. It’s the constant battle with the powers that be to give us the meagre help that we need, and that is what wears down a parent and diminishes our sense of our worth. Please give us the respect that we deserve in caring for our children. We are not asking for much! Just a decent quality of life.

Andra Johnston is the mother of two children – she was formerly voluntary director of Sensational Kids Charity & Parent Liaison Rep. for the Special Needs Parents’ Association (SNPA).

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