Last night, Dave came over. Dave is our neighbor and he lives across the street. He is a sweet man, happily married for thirty three years, and never has a man been happier to have grandchildren. Dave stopped by to drop off a holiday present and while we were talking, my spectrum guy walked past me and stood right in front of Dave. Though we have been in this neighborhood for a few years, Dave’s kids are older so though he waves hello, he has not met the kids formally. My boy, that night with Dave, does not introduce himself but rather begins to go into immediate detail about a Nintendo game he is really into at the moment. Dave nods as though he understands and my boy quickly rushes back into the house. Dave was unphased and said nothing. Mom, feeling like I had just witnessed an oddly autistic run in, felt the need to apologize and say the obligatory, “My boy is on the spectrum and social skills are not always our strongest skill.”
I was surprised when Dave asked, “Autistic? He is?”
I love those moments. No one understands why they are followed with tears welling up in my eyes but I do. I get it because I know where we started. I tell Dave that indeed he is and he is also a marvel, a bit of a mystery and is defying the odds and his original bleak diagnosis. I tell Dave I expect no less from my middle child and I push for him to be as equal to his siblings as I can help him to be. I have three kiddos, and I have the same expectations and dreams for each of my children even though they did not start out with the odds equally in their favor.
His placement in regular education has not always been a foregone conclusion. Listening to him talk was something I did not know I would ever hear. Seeing him take fourth place in the school spelling bee was something I thought you might have made up to tease me. His success did not always walk in with confidence.
The first day we walked into our special education kindergarten class it took me all of about three seconds to FREAK out. I will give kudos to the teacher at the time who did not think he could be successful. I get it. Back then, we didn’t talk much, we didn’t listen much and we had some awful melting down and push back behaviors that were NOT okay for regular ed kindergarten. Even so, I could tell, despite our challenges and despite the ever so dismal evaluation the teacher had in his folder, that he was already the smartest kid in the room when he stepped through the door on Day One. I could already see the teacher letting him run off to the train table and computer cubby to busy himself when he was done with his lesson so that she could spend time with kiddos who needed her more. I could see, from what I knew about his cleverness, that he was going to love it here and never ever do academics again. He would be in play-toy heaven. It was not a good feeling. Although I understood that we were probably not ready for the rigor of regular ed, I clearly didn’t feel like he was ready to have massive play time in school at a time when academics were supposed to be starting out “intensive”.
Ohhh noooo. This was NOT going to work.
And bless the teacher’s heart because I don’t know that she could have done anything differently. There are just so many kiddos of varying abilities in each class that most teachers, even the best ones, are pulled in some tough directions. It is also simply indicative of these little spectrum kiddos that, even with evaluations, it’s hard to define the abilities of a child who is non verbal and somewhat unsocial. It’s just one of the tougher realities of autism in the early years. It’s hard to pin them down educationally but so easy to overlook potential that is not screaming out at you. Ours was by no means screaming out to anyone but mom.
So, being the me that I am, I started to bargain with all parties involved. If you let him into regular kindergarten on a trial basis, I will be whatever you need me to be. I’ll be your aide, your prep mom, your gopher, you name it. If you will take a chance on my guy, I will be your everything. And it worked and I was and we all did it together, flying by the seat of our pants, for my boy. That’s where it all started. Wanting more, expecting more, pushing for more than what is easy or acceptable. There were a lot of moments when we did not have a map, a guide, a graph to follow. Sometimes it’s easy to believe the experts and give up or believe that because they cannot show you now, on the benchmark day, that it is not going to happen.
That is so far from the autism truth!
Right then and there I learned to STAND UP because here’s the crazy thing…all kids on the spectrum are different. Some will overcome crazy obstacles and reach heights that doctors and educators say are impossible. Others won’t. But the truth of the matter is that you won’t know until you try, until you push, until you set high goals and even fail now and again. We had our failures, goodness YES, we had our failures but the very saddest truth for any teacher or parent is giving up or never trying your hardest or taking a chance. Failures can be overcome but giving up before you ever try cannot and that’s just a lose-lose for everyone.
I will also admit that I am probably in the minority when it comes to behavior. I don’t believe that bad behaviors and meltdowns are a given. While it’s a given that spectrum kiddos are more prone due to their sensitivities, coping skills and strategies can be taught to kiddos so that they can overcome many behavioral obstacles. It’s also a big truth that behaviors are more easily changed when kiddos are younger than after a decade of reinforcing and entrenching behavioral patterns. In my experience over the last decade, with routine, structure, consistent expectations, positive reinforcement and consequences, behaviors can be both lessened and overcome.
My boy used to spray snot on his teacher, scream for two hours straight, he threw one lovely wooden puzzle through his bedroom window in a rage and he still will try to exert his will on occasion if he believes he can get away with it. We are 13 now and it has been a long and consistent road to get to where we are. I know my boy is more prone to sensitivities but I also know melt downs are preceded by triggers that if they are watched for can be averted before they escalate. Part of the process has been teaching him how to better recognize his frustration when it is building, give him some tools to help him remember how to use his words and then to help him advocate for himself. I have also found that counting to FIVE centers him when he is angry. I count slowly and get even a little slower if I am nearing five and I think he is simply in need of more time.
The way I see it, no matter what his academic capabilities are, the boy will not be allowed in a typical educational setting if he cannot get his behaviors in check and control himself. It is not okay for him to throw fits when he does not like something and expect to remain in regular ed. Kids like that go to “alternative placements” and that has never been okay with me. I have heard other moms say it’s just part of his “make up” but that has never been good enough for me. That is why I have spent so much time focusing on getting his behaviors under control and helping him to be able to regulate his emotions and frustrations. Let’s face it, behaviors will easily eclipse academics and if he can’t keep himself in control, he can’t learn and he probably won’t be allowed to stay in regular ed.
I thoroughly, 100%, believe discipline can be positive and it cannot be mixed with anger. I never spent a bazillion dollars having experts come into my home for behavior therapy. In the end, I am the one in the house with him all day so I can’t hand the discipline over to anyone else. The buck has to end with me as the authority in the house. And, honestly, it’s not rocket science. The best kind of discipline comes in the form of consistent and firm expectations as well as natural consequences. I also believe “extras” are earned. Electronics (our favored activity) are not free in my home. They come after all the “work” is completed. Work, for my son like my other children, consists of making his bed, cleaning his room, taking his dirty clothes out, putting clean clothes away, taking a shower, brushing his teeth, listening to his teachers at school AND doing his homework. It is only when these are complete that he can have electronics.
After ten years of fighting it hard every day, here’s how I see autism in a nutshell: you can either stand up to autism and push back or you can sit down and let it roll over you. It’s that simple. If you want your child to be part of the mainstream…KEEP PUSHING them in that direction. There are a lot of philosophies and practices when it comes to autism and I don’t go for a lot of the flavor of the month stuff. Maybe it’s because I’m a bit old school or because I try to let common sense and a want to protect my son rule my decisions.
I believe in early intervention with my whole heart. Not because the younger years are the only time when you can make a difference but because the differences and strides you can make during those early years are more profound. And, honestly, I am not saying any of this is going to be easy and it’s certainly not going to be restful, but it’s going to be worth every single step along the way.