I have not had a chance to write much over the last couple of months for a whole host of reasons, but the main one is that it has been difficult to write during this time. In this season of Lent, I’ve got a confession to make. The last couple of months have been pretty challenging. Some of this is a typical 7-year old pushing the envelope type of behavior with an autism backdrop, but other stuff is lingering spectrum tendencies that I would give anything to see leave my son.
Having been through a phase like this before, I knew that we would reach another level in the maturity department, he would transition away from some of the behavior, some of the symptoms would calm down a bit and maybe even go away (a mom can hope), and there would be another period of time that felt more manageable. I did not know when that would be, but I knew I was not in much of a place to write until we got there.
In the last week or so, we have seen a series of really great changes take place that have renewed my faith in the fight against autism and the miracle that is the human brain. But before that began to happen, we had ourselves a full-on hunker-down-in-the- trenches kind of situation on our hands. Our slide started after the New Year with staffing changes at school. Staffing changes are just part of school, part of folks changing roles, but for students, it’s often accompanied by troubles adjusting. It takes time for them to get settled with a teacher or assistant, and they get very unsettled when those folks have to take on new roles. Right off the bat, I knew that was a trigger event. Trigger events have collateral effects. We have seen an uptick in sensory behaviors, emotional reactions, and defiance when they have occurred in the past, and this was no different. It goes back to the ability for them to trust that person working with them, and when that person changes a role, they well, get mad about it. The poor new person walks into a difficult situation and has to earn their trust. It’s something that we have to work through over time. New academic material accompanied the staffing changes, and along with that, a more intense homework and testing regimen. Again, added frustration, added intensity, and a great recipe for a combustible situation. Stir in a little surly 7-year old behavior and typical struggles, and you get a good idea of what the last few months have been like.
I write all of that not really to complain – all of the above is just part of parenting and part of kids growing up – but really just to provide a realistic backdrop of what something as simple as a staffing change can do to a kid working so hard to overcome autism-related issues. And for those parents reading this that have either been through it or haven’t gotten there yet, I hope it helps to know that we understand and when you go through it, that you know there’s a light at the end of the tunnel. All the work and all the patience are worth it.
I could see glimpses of my buddy starting to turn for the better toward the end of January, but several more weeks would follow before we really saw any big changes for the better. It started with his first ‘good’ day at school in quite a while. He had gone through his day with almost zero issues of any sort, completed work independently, listened to directions, and seemed really relaxed once at home. After reading the notes on the day, I poured on the praise and told him I was really proud of him for the good behavior. He sat up a little taller and grinned. We had a good weekend, and crossed our fingers on Monday that maybe good things would continue. They did – he brought home some good grades, had another smooth day, and I got a call from his OT saying that since he had knocked out most all of his goals that the couple of things remaining could be done with at-home exercises. After we talked, I just had to sit there for a second and take a breath. OT had been part of our world in one way or another since mid-2015 with in-school sessions twice a week for the last year and half. A ton of work on Jim’s part, his therapists’ part and ours, and now we were getting to mark it off the list, which meant more time in the classroom. It was just the kind of good news that we all needed. When I told Jim the news, he looked at me with a happy smile, and I could tell that he clearly understood that it meant his hard work was paying off. More good days, more happy notes, and more good grades. He came home the other day and decided he could do his homework on his own, and when Dad reviewed it, it was all correct. Parent mind blown. He turned around and told my husband, “when Mom gets home, she will be so happy with me!” He was quite right!
I don’t know what clicked in his brain. I don’t know if it was just the constant barrage of pressing him to make good decisions, the joint holding of the line by us and his teachers, symptoms easing up a bit, or if it was just that he decided it was time to do things a little differently and a little better. I don’t know if it was two weeks ago in mass when I could tell he was starting to struggle but was really trying to hold it together to the end – I hugged him to me and asked God to please help him and bless him. Whatever it was, I’ll take it. It’s a little early to declare any type of major victory on this latest challenge, but I am optimistic about the new place where we find ourselves. Mainly, I am excited for him. It’s worth everything to see your child smile that big smile, stand a little taller, and realize something in himself that he didn’t know was there. The progress seems to feed on itself. I know we will plateau again, and I know there will be other setbacks. All the same, the here and now is pretty cool.
It’s exciting because when you start out with all this, you have all these unknowns. You try to tell yourself to take it a day at a time, and not to let yourself lose faith that things will progress and eventually be okay or manageable. I watched a video from another autism mom circulating in the midst of our dilemma where she was clearly at a low point, clearly had hit a wall, and clearly had come to a realization that it was quite possible that things were not going to be okay for her son. It was hard to watch, but as she relayed all the raw emotions and all that she had faced down over the course of their journey, my heart ached for her. I knew exactly where she was, and I knew how terribly frustrating it can be to be in a tough spot and feel like nothing you were trying was working. I knew how hard it was to believe so strongly in your child and to feel powerless against a condition that tries to take them from you. I knew the fears she expressed. I knew the beat-down frustration. I knew the crushing sadness after a really bad day. I felt a little guilty though, because I do not know (and I don’t want to know) what it feels like to get to a point where you don’t think it’s going to be okay one day. I can’t imagine what it’s like to have to admit that to yourself as a parent. I’m not sure I ever could if that was our situation. I have had lots of conversations with other autism parents, and it is always striking to me how much in common we all have. I’ve always tried to encourage people when I could that progress is progress no matter how incremental. We have grinded out our journey painstakingly, and I will always give most all of the credit to Jim and his teachers/therapists. He’s a strong-minded, strong-spirited, wicked smart, and super-loving child. I have always felt like autism picked the wrong little dude in landing on him. We still have a lot of work to do, but the trajectory is good. One step forward, two steps back, three steps forward – it’s still progress.
I'm Not Driving 