This post might sting a bit…

kids with autism

“Mother knew that she had to “stretch” and lovingly push me just outside of my comfort zone so I could develop to my fullest.”

These are wise words spoken by Temple Grandin, autism advocate, animal science professor and best-selling author.

Like Temple, with every fibre of my being I believe that having autism, or any special need for that matter, does not mean less expectations. In fact, it might mean more.

What is the reality for many children who live with autism?

Too many parents, unintentionally, ‘sell out’ kids with autism. I know. That was harsh. But, to be fair, unless we name what is not working, we cannot do better. We love our kids. We want the best for them. That is precisely why it is imperative that we pull the band aid off – even if it hurts –  and identify what we might be doing that is undermining our children’s development.

I have been there. Heartbreaking moments (sometimes hours) of meltdowns, rock solid resistance, and exasperating negotiations. Lack of sleep and constant vigilance takes its toll. Raising a child whose brain is wired with autism is often the ultimate challenger of physical, emotional and mental well being for parents and caregivers. My husband and I made a whole host of mistakes in parenting. Too strict, too lenient, too emotional, too much, too soon – the list could go on and on.

Making mistakes is human. But, justifying those mistakes and failing to learn from them impoverishes us and the child. Personal and professional experience has taught me that one of the most heartbreaking actions we can take as parents of children with autism, is to expect too little of our child.

I was fortunate because my role model in raising our son and the students whom I taught was Eustacia Cutler, Temple Grandin’s mother. She was way ahead of her time. In fact, given the level of ‘autism knowledge’ in the 1950’s, she was probably the only one who believed that Temple could be more than what her behaviour presented. Temple’s mom inspired me. She taught me to brave the ‘storm’ that would ensue when I raised my expectations, implement supports and teach skills so that my son, like his sisters would attend events, learn, be polite, and participate in activities -even when he preferred not to do so.

Sometimes, it was so tempting to just enjoy the quiet and circumvent the struggle by just allowing our son to continue to watch TV, play his video game, avoid the family dinner at the restaurant or miss church. Anything that yanked him from his (and my own) calm sanctuary was never easy on him – or us. Growth and development is never easy. It demands we leave the comfort zone.

In her book, “The Loving Push.” Temple Grandin and coauthor Dr. Moore, are very clear that we are NOT doing our kids any favours by sheltering them from any discomfort, struggle and challenge.

Coauthor, psychologist and autism specialist, Dr. Debra Moore asserts:

“Success is not measured by or determined by IQ, verbal fluency or physical ability. Success is steered by hope, determination and discovery…all children should have hopes and dreams, and the opportunity to choose and lead meaningful and satisfying lives. With the support, intervention and “loving pushes” of family and others, these dreams can come true.”

So, what exactly can parents do to feed those hopes, dreams and provide opportunities?

First, we need to raise our expectations and lovingly push our children with autism.

  • Take an honest, hard look at how much free time your child is spending on ipads, DS’s TV, video games…. any device that provides an escape. What do you tell yourself to justify it?
  • Take another inventory of the times you have excused your child with autism for being rude, inappropriate or not doing chores because the child has ‘autism?’
  • Examine what activities your other children do and compare that with what your child who lives with autism does. Are sports, clubs, social groups and teams a part of your other children’s’ lives?
  • Take notice of the times when, out of exasperation, you give in to demands made by a child who is communicating by screaming, crying, or any other form of behaviour that is less than appealing?

I can hear your protests – yes, our kids with autism need a break after coping with the huge stresses associated with having autism in school. Those are very real. But, let’s be honest, depending on the age of the child, 30 – 60 minutes for ALL devices in an evening is a break. Any more than that is about escape and avoidance (for parents and kids).

Yes, autism does impact behaviour and communication and sometimes our kids can do or say things that are rude, inappropriate and embarrassing. Sometimes we do need to explain a behaviour in order to increase awareness. However, if we leave the behaviour at that, ‘write it off’ as ‘autistic behaviour’ and do nothing, I believe, we have let our children down. We missed an opportunity to teach so that the child could grow. It is up to us, as parents, to seek the help from behaviour experts and practice the strategies we are taught. Consistently practice them. Even when we are tired, fed up and done with it all.  Giving up is not an option. Our children are depending on us.  (are we doing a disservice to the world of autism as a whole???)

Do you know what is far more detrimental to learning and relationships in school than an autism diagnosis?

A child who comes to school having a poor sleep because he or she spent inordinate amount of time on an ipad or video games the night before. I promise you that the impact on a student’s ability to focus and engage is devastating. To understand the gravity of the effect, imagine (or recall) how difficult it is to think clearly, be efficient, and collaborative on days when you are at your job having had very little sleep or far too much alcohol the previous night. I kid you not. 😊

Our kids with autism (and every kid) needs to get fresh air, movement and time to develop their imagination in their time after school. Being sedentary and glued to a TV or some other screen has a drastic effect on mood, sleep, focus, emotional control and appetite.

Consider that we often enroll our children who do not have autism in sports and clubs in order to build friendships, teach them skills, work ethic and commitment.  Our kids with autism deserve to learn have those opportunities as well – if not more than any child. True, as parents, we will have to put some extra effort into creating supports such as visuals, one to one practice, extra time, planned reinforcement and loads of patience in order to have the child with autism participate as fully as possible. It will often be a bit of a battle to get them started. I still marvel at the fact that we paid for swim lessons for at least a year before Kieran would progress from putting his bathing suit on to dipping one foot in the water! Baby steps. 😊  Ironically, we paid dearly in money, sleep and free time for our tenacity, as he went on to become a competitive swimmer in the Special Olympics and eventually on the local swim team!

My intent is not to shame anyone for their choices, nor to preach from a place of arrogance. I share what I have learned from my own personal blunders in parenting and my experience on the front line as an educator. I know you want the best for your child – you ARE reading this, after all. I urge you to rally your resources and capitalize on every single opportunity so that your child with autism can lead meaningful and satisfying life with the support, intervention and “loving pushes” of family and others.

Feel free to share some stinging moments you’ve survived in the comments below.

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