It’s incredible, really. With no formal training and no prior knowledge, parents of children on the spectrum become experts on what will and will not work for their child. They know when a behavior issue is really a lack of understanding issue or a lack of appropriate support issue. They quickly learn to provide their child with extra help in so many areas of functioning, and to slow down the pace and delivery of teaching so that their child can be successful.
Since autism, with its influence on science, medicine, technology and the arts, makes significant and important contributions to mankind, we should all be thankful for those moms and dads who help their ASD children to believe in themselves, to feel protected, understood, safe, valued, and loved. That’s just one reason. Here are a dozen more:
1. You honour and take into consideration your child’s comfort at all time. You know that only when he feels safe and comfortable in his physical environment will he be open and able to learn. Though the impact of sensory processing disorder on children with autism is poorly understood and treated as an afterthought that’s really just an excuse for bad behavior, you know better. You’re fine if she wears leggings and cotton t-shirts every day; you love the extra tight hugs he gives; you gladly bring noise cancelling headphones to protect his ears from those extremely loud new hand dryers in the mall restrooms. In return, your child feels understood, respected, and secure when you’re around.
2. You get down on the floor and enjoy what she enjoys and revel in what she loves to do. You learn to play Lego, master Minecraft, and spell all the different dinosaur names. You do this because you know that only when complete trust has been earned can you challenge your child to learn and experience more.
3. You focus on what he does right—you celebrate what you want to see and you calmly teach what he has yet to master. You instinctively know that reprimanding him does harm and causes him deep pain. You know that ‘No” is a trigger and you find other ways to give that response. An example of a positive approach that might prevent a problem vs a wrong approach that is likely to escalate him: “You love that iPad and you get to play again at 4:00, honey,” instead of, “No, you cannot keep playing on the iPad. Time is up. Put it away.” Everyone duck!!
4. You do your best to understand you child before deciding how to respond to a behavior. You know, for example, that forgetting is not willful—short term memory differences are a common feature of ASD. You put easy-to-use strategies in place to help your child to remember and to be successful. You share those with everyone. You understand that being clumsy is not a choice, and you don’t ridicule her for it. Instead, you seek information from an occupational therapist to help you understand some of the physical implications of ASD: motor planning, balance, gross and fine motor differences, for starters.
5. You intuitively know that when a child WON’T do homework it is not oppositional defiance, but something else: he CAN’T.
You go through the possibilities in your mind. Though they are almost endless, some common ones include A) The speed and the volume of the curriculum are too much and too fast for children who process more slowly, or B) the lesson was taught too quickly for him, and he was lost after the first two sentences of instruction, or maybe C) he understood the lesson perfectly, but when he sat down to do the homework, he had forgotten the lesson, or D) he was teased or bullied that morning at recess and could not pay attention to the lesson, or E) he was tired, hungry, bothered by the sound of someone eating in the next room. You get the idea. If he won’t, it’s because he can’t. We’ve missed something. It’s on the adults to figure it out.
6. You do your best to model what you want to see. If you want him to learn to cope with plans that change unexpectedly, you stay calm when unexpected change happens to you. Instead of flipping out, you respond with behavior you want to see in him: “Oh well. I was planning to make lasagna for dinner but we are all out of mozzarella. Let’s order a pizza instead.”
7. You don’t let anyone hurt your child. Anyone…and that includes close relatives, spouses or educators. Anyone who feels the needs to editorialize your child’s behaviours (he was rude, naughty, silly, zoned out, difficult, disruptive) will be asked to stop. Now. Negative words can be taken to heart by our vulnerable children and can cause harm. They may not let go of social slights for a very long time.
8. You go easy on yourself. You know that autism means you’ll be constantly learning, and that you will make mistakes as you go along. That’s fine. You cannot do better until you know better—and once you know better, well, you do better. Your child will learn from your mistakes as well as his. If you model heartfelt apologies, he stands to learn the art of forgiveness and that everyone—even parents—can make mistakes.
9. You learn to make time for your other children and your partner. You have learned to enjoy the life that you have instead of focusing every spare moment on scouring the net for that one sage piece of advice that’s going to make life easy for your ASD child. You and your child will learn as the months and years pass. You don’t need to know everything and you certainly don’t need to have it memorized yesterday.
10. You are the case manager in your child’s journey. You are the cheerleader, counsellor, tutor, leisure guide, fashion advisor, occupational therapist, social skills trainer and teacher. You know him best and so you decide who can work on Team-Bobby. If someone does not have more than an academic understanding of autism, they are not going to make a good Team-Bobby member. If they don’t respect the expertise of the parent, hasta la vista, baby.
11. You spend countless hours re-teaching the lessons that were taught each day in school. You’ve have to…he needs it all chunked, broken down and explained one step at a time. Of course, that accommodation is in his IEP, but teachers aren’t actually given the time or the resources to do that, and sadly, not all teachers understand how to chunk lessons or why they should even bother... so you do it. Gladly…and very well.
12. You have learned to ignore the professionals who seem intent on blaming parenting for challenging ASD-related behaviours in your child. You spend much of your spare time improving your knowledge of ASD, spending what money you have on social opportunities and professional supports, and remaining calm and loving during difficult moments. You understand this child and can calm him down and figure him out most of the time. However, too many professionals who lack a calm and respectful approach to your son trigger his challenging behaviors then look to blame someone else for their lack of effective response. You see that for what it is: grownups who aren’t mature enough to look inward when things go wrong. When they cast their accusatory glances your way, you take the high road. Considerate of their dignity, you try to change their understanding of what happened in hopes of improving their understanding. It’s damn exhausting, isn’t it?