07 May A Mother Like Any Other
Anna Brasier is frustrated by those who believe that parents of children with disabilities or special needs must always look on the bright side.
I now know that parents of disabled children aren’t the mythical, magical people who I had read about or imagined. They are normal people who are trying to live their lives and love and teach their children as well as they can.
It seems to be the case that once you learn that you have a child with a disability, you pass through a door that you never knew was there before. It is not a colourful door; it doesn’t stand out from any of the others. It has no signs or distinct markings on the front. It’s just a plain door that opens for you and you’re expected to walk through with guts and determination. There is no shrinking back, no retreating.
My child was diagnosed with autism
What lies beyond that door is your new life with your child and your family. A life filled with doctors and special therapists. All of a sudden you are learning to cope with new terminologies for your child’s condition and acting as teacher to other family members and friends.
Friends and family may like to think that they understand what happens beyond the door, but most, even with good intentions, never get past the front screen. They look through it into the room and see a distorted image of shadows and light.
Before my child was diagnosed with autism, I used to think that parents of children with disabilities or special needs were somehow better parents than me. I thought that it must take a special kind of person to be the parent of such a child – as if you needed higher credentials to do the more difficult job. And now I am one of those parents who I used to revere, and my feelings are quite mixed.
“I can’t do this,” was one of my first reactions, “I’m not that kind of person.” “And what kind of person is that?” my husband asked me. “You know. A kind, patient, never-angry, understanding mum,” I cried. “Yes, you are. You’re all of those things. You just can’t see it. Let’s just take one day at a time.” Wise words from my husband.
I certainly don’t feel that I have been ‘chosen’ to be a special mum
So I have tried to learn, and I believe that my attitude is changing. It has been two years now since my daughter’s diagnosis and I am still learning every day to be a better parent to her and her two siblings.
I now know that parents of disabled children aren’t the mythical, magical people who I had read about or imagined. They are normal people who are trying to live their lives and love and teach their children as well as they can. They wish the very best for their children in life, just as we all do. They struggle and endure difficulties too; it’s just that their difficulties and struggles present themselves more often and on a daily basis – hence the need for respite. There is no magic behind being one of these parents. I certainly don’t feel that I have been ‘chosen’ to be a special mum. I’m just a mum.
As well as learning to deal with your own feelings and those of your immediate family, you have to deal with the reactions of extended family, friends and the general public. When I first started telling people that my daughter had been diagnosed with autism, many didn’t know how to respond. Some reacted as though I had just told them that she had been suffering from a cold: “Oh really!” Others tried to be optimistic and said to me, “Well, she’s still the same girl. Nothing’s really changed”. This was true in part; she was still my beautiful, smart girl. However, not one person acknowledged our disappointment. No-one said, ‘I’m sorry to hear that. You must be upset.’
Well, you knew she was autistic. What did you expect?
Am I expecting too much? I get very upset when people expect me not to show distress, anger or unhappiness in relation to my autistic child. Extended family and friends who find it difficult to cope with my daughter’s autism always try to put a positive spin on any negative story that they hear. Don’t get me wrong, it’s great to be positive, but pretending to be positive all the time in the face of difficulty can trivialise your situation.
A school mum once said to me, “Well you knew she was autistic. What did you expect?” when I had complained that my daughter hadn’t done so well in a psychology test. Unbelievable, but that’s how some people ‘on the other side of the screen’ think. Yet, if they were to voice their disappointment at little Johnny not doing so well at school or causing trouble at home, they wouldn’t expect to hear you say, ‘Well, you wanted kids and you knew they’d be trouble’.
How is their plight different from mine? We all want the best for our children, and take great pride in their achievements and are disappointed when things don’t go well for them. My child’s disability might be ‘old news’ to some, but I live the disappointment every day.
Not all people react like the mother I mentioned, and there are many who try to help and to understand. I have found that the best outlet is when I share my good and bad experiences with other mums of children with disabilities. In these groups, there is no need to explain or apologise for your child’s behaviour – or your own, for that matter. I consider myself very fortunate that I also have a circle of friends with whom I can talk. In the past two years, I have learnt who I can and can’t share my feelings with, and I am trying to understand that there are some family members and friends who may never accept my daughter’s autism.
Yes, there are many great things to celebrate about our child, and we embrace every achievement, no matter how insignificant it may seem. But we are human also. Let us complain and share our disappointments as well as our triumphs. Being able to express our grievances as well as our happy feelings helps us to cope better with our situation. After all, isn’t that what any parent does?
Illustration by Rosalie Street