Our Year Long Secret

It’s been a little more than a year. A year since I sat in my 4th doctor’s office and listened to them tell me that my son is on the Autism spectrum. So many emotions and thoughts filled my brain. I’ve been so overwhelmed and unsure of myself as a Mom, that only my immediate family & his teachers knew, until today.

I was relieved that there was a name for what was going on with him, sad that it took us so long to get it diagnosed and overwhelmed with everything that had to come next. He has Asperger Syndrome and technically defined as “A developmental disorder affecting ability to effectively socialize and communicate and is a condition on the autism spectrum, with generally higher functions.” The Autism spectrum is just that - an extremely wide spectrum and children can be anywhere on it. My son happens to be on the high functioning side (a phrase I flat out hate) but that made it difficult to figure things out.

My Noah is a sweet, highly intelligent, well behaved child - all good things, but also all things that took us 8 years to get him diagnosed. I was fortunate and got to stay home with him from birth, he never went to pre-school, he and I just hung out for 5 years. He met all milestones, walking, talking, learned baby signs, read before kindergarten, could write his name…etc. As you can imagine, most people just thought he was a mama’s boy. When he went to kindergarten, there was some anxiety about leaving me, but we all figured it was to be expected, but it never got better, he never really adjusted to going to school. He always cried, had some melt downs during the day and at night, hated any change in schedule, like a field trip or a substitute teacher. It was just very difficult and there didn’t seem to be any solution. There weren’t enough reward charts, re-directing, schedules, early bed times in the world. He also had amazing, patient, thoughtful teachers every single year and that still didn’t help. That just wasn’t the problem, but no one knew what it was. Not even me, I’m his Mom, I was supposed to know. I didn’t, but I knew enough to advocate for him and keep going until we figured out why he couldn’t adjust to school.

The first doctor did the regular tests and said how great of a child he is. Lovely to hear, but that didn’t solve it. The second doctor tested him for ADD - not even a the tiniest blip on radar, although there are some repetitive motions that he does for comfort, but very little hyperactivity and he pays attention in class, that is what teachers have always praised him for. The next doctor tested him for some kind of trauma, thinking it was environmental (and by environmental meaning me & our home/my parenting) - you can imagine how that made me feel, but nothing. The 4th doctor, was an angel. I was honestly about to give up and home school him because we were heading to a new school year and I just could not do it again. The daily crying, the nights of not wanting to go to bed because that meant school in the morning. This doctor, knew within a few minutes of talking to him what was going on. He did all of the test and came back and confirmed he was on the spectrum.

As relieved as I am that he has an official diagnoses and we can now “treat” him - it is just the start. We’ve tried a few medications, another challenge because of his size. He’s 5 foot, over 100 pounds, but just 9. It was a fight with the insurance company to approve the medication based on his weight instead of his age and even with that fight, it still cost $90 for his 30 day prescription. There are therapy sessions, I’ve put him in singular sports like swim, horseback riding, karate. There are so many doctors appointments and blood tests to make sure the meds aren’t doing more harm than good.

He has struggles. Aspergers is a processing disorder. Things that should be every day “normal” things are not so. He “should” be able to tie his shoes with no problem, but it’s a struggle. He “should” be able to get a hair cut every 2 weeks, but he HATES it. The noise of the ciippers, the constant touching is all difficult for him to process. He “should” be able to carry on a 3 sentence conversation with people, but if you ask him more than 2 or 3 questions, he will begin to cry. He “should” be able to play team sports, but the instruction is difficult, managing a relationship with teammates is difficult. In fact, because he is such a good size, he is asked on a regular basis why he doesn’t play football like his brother and it sends him to immediate tears. He gets angry - goes from zero to 60 and there is no de-escalating him, he just has to work through it or he breaks something and that’s a completely different issue. The balance between acknowledging his Aspergers and requiring him to follow the rules. I could go on and on, but those are a couple at the top of the list.

I decided to share now because we are a few days away from a new school year and I want you to know and I hope that you share with your children a few things:

Just because of someone’s outside appearance is “normal” does not mean there isn’t an internal struggle. The outside doesn’t always match the inside and being a friend to someone who is quiet or different or weird could be a great thing! My child and so many others on and off the spectrum just want someone to sit with at lunch and play with at recess. He (and so many others) make really great friends, but just may not be able to be a friend first. 💗