It’s been a year now since my son received his final diagnosis. As I look back at all the progress we have made, and how much our life has changed for the better, I am so very grateful.
As I look back, I can also see that many of the things we learned, we did so by trial and error. It wasn’t a doctor, or one specific book, or another expert – by God’s grace it was just us, trying to help our son and figure out how to live that educated us the most.
So, in the hopes that it might help other mommas, I am sharing today the 5 things I wish I knew back when my son was diagnosed –
1. The Behavior Has A Trigger
I repeat, the behavior has a trigger. Just because I had no idea what was causing it, doesn’t mean there wasn’t a reason for my sons increasingly violent, agitated behavior. After finally getting the diagnosis, it all started to make sense – especially the extreme reactions to things that seemed effortless for other children (including his brother).
Basic everyday occurrences like putting on socks, wearing shoes that were not crocs, touching grass or sand or dirt or cement with his toes (or hands for that matter), chewing meat that was a little on the tough side, smelling anything at a restaurant, on a plane, in a public restroom – these things had been causing anxiety and meltdowns for years.
It’s very simple to write the above paragraph now and correlate these triggers to the melt downs. A year ago however? Totally different story.
“I have no idea what is going on. He totally lost it today when it was time to get ready for class. He threw his game system at me and started trying to tear his clothes…before I even told him he needed to put his socks and shoes on. My poor boy. What is happening?” was a regular conversation I had with just about anyone who would listen.
I didn’t make the connection, or if I did, I didn’t totally trust it.
I wish someone had just looked me in the eye and said, “He is reacting this way for a reason. Ask him, when he is calm. Study him, when he is melting down. The answers are right in front of you. You can figure out what is causing some of this.”
2. Lycra Sheets
Occupational therapy has been so, so good for Sourdough (read more about his therapist and our approach here). One of the things we learned very quickly in OT is that Sourdough loves the feeling of Lycra on his skin. I have no idea why, but it doesn’t matter. Lycra soothes his over reactive sensory system better than anything else we have tried. Therefore, we love it.
When his therapist told me there were sheets made of it, I immediately did some research and intended to buy a pair…until I saw the price. Oh my goodness. No way.
Instead I went to the fabric store with a 40% off coupon, bought yards of it, and tied it around his bed.
It changed our world.
Not only has it helped him relax and sleep at night, but when things are loud or overwhelming or he is just having an off day, he retreats under the sheets for a little while. It calms him down and when he feels better, he comes back out with us. This called self regulation my friends, and it is awesome.
3. Dress For Success
When I go to our various doctors appointments and therapies, I have found it helps to dress professionally and try to do my hair and make-up (OK, here I stress try.)
Why? It may not be fair or right, but I find when I am dressed professionally, the doctor is more likely to treat me as an equal. More importantly, if I am concerned, my concerns are taken more seriously.
The times when I have gone in sweats and hair all a mess, I find I am more or less given instructions, rather than being treated like an important resource. (This has also been true at Bacon’s appointments too.)
Again, it may not be right, but it works and I wish I would’ve figured it out sooner.
4. Alone Time Is OK
It used to make me anxious that my son would spend so much time in his room. He is usually reading, but for some reason that didn’t matter. I thought it meant he was withdrawing from the world and his family – that it was only a matter of time before he started dressing all in black and researching bombs on the internet.
The truth is, Sourdough just needs more time to himself than I consider average. He is an introvert to the extreme. After being out and about with people (including interactions with me), he needs time to unwind. He needs time to pursue his interests, to immerse himself in learning more and more about all of his favorite subjects.
You know what? He almost always comes out refreshed and ready to once again engage. I have learned to not only respect his need for time alone, but appreciate it. It makes him more capable when he is interacting with us, and I get a little bit of time one on one with Bacon.
5. There Is Blessing
Oh boy, this one is big. When Sourdough was finally diagnosed, I was grief stricken and a little panicky. I was grateful, but more because it gave us resources to help my son.
I had no idea that a year later I would say there is so much blessing to be found in this life, even with, sometimes especially with this diagnosis.
There is no way I could’ve know the peace and joy that comes from simply having my child give me a hug, or enjoy a play date with his friends. I would’ve never counted cooking with my son in the kitchen with me, or shopping at the farmers’ market together a spirit-filled experience, but I do now.
What I wish I would’ve known back then is that all of this really is purposeful. It’s ugly and messy and sad sometimes, yes. And it is also fun and new, and interesting and challenging and loving and joy-filled.
This is the life we have been given.
What I couldn’t have possibly known then, is how grateful I am for all of it.