Every parent of a special needs child has been there.
You know the moment. It’s when you realize that the therapy or activity you are considering, or the professional you have already hired, or the educational program you signed up for long ago, doesn’t quite live up to your expectations. When you know it’s time for a change, but are dreading telling the professionals. Or dreading whatever might come next, which might prove equally disappointing.
That is the moment I hate, the moment that makes me squirm. When I arrive, full of excitement and plans for the future, and then leave, my hopes dashed and the future looking vague and bleak.
You can come to this realization, that this is not for you, in many different ways.
This is one of the hardest ways. Your son or daughter simply does not qualify. Usually this involves the learned opinion of someone who has just met your child.
My son is not considered a good candidate for talk therapy, for instance. Or for a social skills group, even one comprised entirely of teens with autism. Mainly because his verbal skills, at the moment, have decided to hide themselves away in a remote place where none can visit. I understand their point. Talk therapy without the talking could make for a very long hour. And there is nothing particularly social about refusing to talk. But still, rejection stings.
There is another common type of rejection: from other children. The playground is a perfect example. My son loves to swing. He will swing for an hour. When he is not swinging, he tends to pace, to talk to himself. The other children are confused. So, they go the other way. I don’t know if he notices, but I do.
We have encountered this one too. I walk into a room thinking we are going to discuss a type of therapy, or participate in a fun activity, and I am floored by a very unfamiliar or unsettling approach to children, or learning, or life in general.
We had this problem with Boy Scouts. It proved to be too ritualistic and militaristic for our tastes, as well as having several basic tenets that we disagreed with. Church turned out to be less than welcoming to disabilities as well, although there were attempts to bend rigid rules of conformity, discipline and obedience. We also ended up feeling that only one political belief was tolerated. And the intolerance of our own tolerance was unbearable.
We went to a martial arts class once. It was amazing. The one who led the class was so good with the children. But the idea was discipline, discipline, discipline. All I could hear was failure, failure, failure. The irony of autism is that the child’s inflexibility demands that we, as adults and caregivers and friends, be more flexible.
Another example is sports. The notion of winning at all costs. Of pushing our children to their limit. The fact is, some of them reach their limit much earlier than others. And when a child with autism has reached his limit, watch out!
I Can Do It Better and Cheaper
This may be strictly a homeschooling phenomenon, but there is a segment of services that are available only because they save parents time and effort. In a homeschool, the two things not in short supply are time and effort. So, if something is relatively simple to do, it is often tempting to rationalize just doing it yourself. Professionals will sometimes even tell you how they would approach a given problem, and suddenly you have a road map. The quantity and quality of curricula out there on almost every subject makes the job even more doable.
I looked into getting life skills training for my child, just to solidify his grasp of basic concepts. You need to put the cheese back in the fridge, sealed in a plastic bag after you use it. You need to make sure you have a towel in the bathroom, before you take a shower, so when you exit the shower, you don’t leave a trail of water across the bathroom floor. Stuff like that.
To reduce the amount of yelling going on in my house, mainly. There are only so many times that you can make the exact same words come out of your mouth at the same volume.
I got a recommendation for ABA (Applied Behavior Analysis) therapy. Chunk the task. Teach each chunk. Reward successful performance. Practice, practice, practice. Look at before and after the behavior, antecedent and consequence. Keep data.
I was hesitant.
But why does ABA leave such a bad taste in your mouth, I was asked. I could not come up with an answer at the time. Not a good answer anyway. We haven’t done it. I don’t really know what it’s like, from experience. But still. I don’t want to try it, either. I definitely have a prejudice against it.
I guess, it’s because it does not seem like something you should do to a human being, much less a child. It seems disrespectful of the original and unique entity that he or she is. Disrespectful of his or her right to self-determination, to decide how to react to a given stimulus, for example. It seems to send the message that he or she needs to be worked on. He or she is flawed, or faulty. Not that any child is perfect, least of all mine. But he is fine as he is.
I remember kindergarten. The tiny munchkins. The brightly colored posters. The floor pads with their names on them. The hooks to hang up their backpacks. And of course, the chocolate treat jar in the corner, to be delivered every time the child did something right. As “reinforcement”. Like doggie treats for a dog you are trying to house train. The idea that motivation is often extrinsic, like a paycheck, I get that. But the idea that a child, because he has a disability, has no intrinsic motivation? That without your coaxing, he would do nothing? These children want to do things. Just not necessarily what’s on offer. Not necessarily on your schedule.
Still, for DIY purposes, as a homeschool mom–the chunking part, the division of a task into pieces, well, I can do that. The teaching part I can do. The rewarding I can do. At my discretion.
The rest—well, let’s wait and see whether that is really necessary.
Beyond the Disappointment
The decision to leave, in love and therapy, in playgroups and homeschool co-ops, in after-school activities and family get-togethers, is always painful. We want to believe we can do anything, blend into any environment, feel included despite our children’s differences. Then reality hits us in the face. And we must learn to take it.
My husband has gained a lot of wisdom over the years listening to a podcast on Buddhism, Bad Buddhist Radio, which is snarky and sarcastic and far from orthodox, if there is such a thing as orthodox Buddhism. His favorite device for thinking through situations is the Eightfold Path, which often leads him to a feeling of equanimity, that is, of peace with what has just occurred.
- Right Understanding—Do I understand what just happened correctly? Is there something I am missing?
- Right Thought—Am I brooding, or thinking emotional thoughts, or thoughts connected with other things than that in front of me? Is there something faulty in my logic?
- Right Speech—Did I say what I meant? Did I stay silent when I should have spoken, or speak when I should have stayed silent? Was I clear, concise, kind?
- Right Action—Am I doing the right thing in response to what happened? Am I overreacting or underreacting?
- Right Livelihood—Is my job (for example, homeschool mom) the one I want or should be doing now? Do I somehow carry a grudge because this is my job?
- Right Effort—Have I really given this a chance to work? Did I do my part and use my energy to promote its success? Is my effort wasted on this?
- Right Mindfulness—Am I focusing on the problem and current conditions, or are prejudices or feelings or past experiences clouding my judgment?
- Right Concentration—Is this a spur-of-the-moment decision or have I considered all sides of this? Have I taken the time necessary and gathered enough information to make a good decision? Am I distracted by something or someone?
Think about it and make your best decision. It’s all you can do.
I do like this reflection on homeschooling an autistic child, it so chimes in with our own philosophy and experience. My wife and I are both autistic, my wife officially diagnosed very recently while I am self-diagnosed; we also have three grown-up kids on the spectrum (one diagnosed as an adult, one other with clear co-morbidities and a third very likely), with children of their own, some of whom show varying degrees of being on the spectrum. We ALL struggled with school even though we found various ways to partially cope and to mask.
Sorry, that was a long spiel but it was only to show that I appreciate the uphill journey you must have gone through, in fact may still be working through. I’m interested in what you say about ABA as what little I know and have seen about it appears to be tantamount to cruelty, and certainly resembles training animals by bending them to the trainer’s will. Silberman’s overview certainly opened my eyes to that.
There are no easy or simple answers, I know, because every autist is different. But I’m in awe of your commitment and the clear loving kindness that you seem to be putting into it. Thanks for sharing these insights.