It's official, Noah has a clinical diagnosis. The Autism Journey for parents is a ridiculously complicated and lengthy process. Throw in a pandemic and the closures of the few available facilities... It's nearly impossible to feel like any progress is ever being made. BUT GOD. I figured I would bring things up to speed and take things from there. This is going to be a quick version of Noah's journey so far. Just to bring you up to speed. I'm sure some nuggets will come with more entries.
For the most part, pregnancy was normal. other than the fact that my body HATES being pregnant. I only really had complications with my first pregnancy. But, the first time I realized something was different with Noah was when I was about 5 months pregnant. I rode with my husband at 5 a.m. to drop him off at work. Being pregnant, I decided to lay the seat back and take a nap on the way there. Just as soon as I began to drift off to sleep, BAM!!! Another driver hit us. Before this, Noah was often as low as he could get in my tummy. So, the seat belt jerked my tiny baby under my breasts. That is where he remained. My husband and I get to the hospital, and the staff begins to monitor Noah. He kept squirming away from the monitor. So, every 30 minutes, the nurse adjusts the sensors to record his little heartbeat. But, that was all pretty normal. Noah waited a while to come back down. After all, his peaceful sleep had been interrupted by the crash. After a few hours, I felt his little foot test the lower half of my belly. He let his foot stay there for a minute, then scooted his other leg and waited. Next, his torso, until finally, he snuggled back into his regular spot. The whole process took about 30-45 minutes. What fetus do you know acts like that? None that I know of.
My sweet little baby... He was doing all kinds of things and, for the most part, was advanced by 1-3 months in all areas of development. The only concern I really had was his lack of remembering that the bed or the couch had an endpoint.
Noah wasn't actually speaking. He was still advanced in most other areas. But, words... No. He would jester or attempt to say words. But unless you lived with him, you didn't know what he was saying. We started the process of figuring out what was going on.
His doctor ordered a hearing test and an autism test after I brought up my concerns.
Getting Noah officially tested and notifying the school that he would need a headstart program was impacted by the pandemic. But he noticed that we couldn't communicate with him and took matters into his own hands. He started to binge-watch movies on repeat. At first, we just figured he was doing what most kids his age did...find something they like and force everyone to watch it over and over. Nope, he was studying. He started using 1-2 sentence words regularly, and he really got expressive. Then he noticed the Google Home and started to try to get Google to understand him.
"Hey Goo..." Nothing. "Hey Gle..." Nothing. Then, one day... "Hey Google!" Google Chimes.
I decided a pet would help him desire to talk even more. He didn't really understand things like gentle or small. Even though, by then, he was a big brother. We got a bearded dragon and named him Gunther. Then one day, as he was scrolling thru YouTube kids and discovered Mr. Blippi. And, the words poured forth although still garbled.
Finally, we managed to get in touch with a testing center, and we waited for months to finally get the test done. Only for them to turn over a report to Noah's doctor that said there was nothing to be concerned with. He's 4 years old and communicates using lines from his favorite movies.
"Cookie." As he pointed to the top of the fridge, where they live.
No, baby, no cookies right now."
"Oooh, I think the car just died." With a look of utter disappointment plastered across his face.
Yeah...that's completely normal communication. We went in for a visit shortly after, and his doctor agreed that this testing facility is crap, and ordered a second opinion. She also ordered speech therapy because his language hadn't improved very much. We called around and found him a speech therapy clinic to get him support.
Now, simultaneously, we were still trying to contact the school. At that point, everything reopened, and there was no reason they shouldn't have contacted us. Especially since we emailed and followed up in person. So, in a fit of frustration, I spent days contacting EVERYONE. Including the state administration board. Oh, did the ball start to roll!
By the end of the 2021/2022 school year, Noah had been educationally diagnosed with autism. He began kindergarten that August for the 2022/2023 school year.
He was heavily delayed, but he finally made it! The district put him in a program called PALS. The biggest problem with it was that it was for up-to 5-year-olds. At which point, Noah would age out of the program and have to be referred to another program.
Things were pretty smooth through the end of the 2022/2023 school year. Then, in May of 2023, he was referred to a program called TREK. The school he started with didn't have the program, so he was referred to another school. Now, children with autism have different needs, likes, dislikes, preferences, and ways of doing things. Sure, there are similarities, but most of everything is different from their fellow autistic peers. One thing that is consistent with all types of autism, and likely any kid with a "disability," is the need for consistency. This means ripping these children from a school they are used to and putting them in a completely new school is extremely problematic. So we were trying to cope and prepare Noah for the change.
I decided to start registering him with his newly assigned public school early. I am so glad I did. The registrar sent my son's enrollment to the SPED Chair who then contacted me. She wanted to let me know some information as early as possible.
First. The school was being moved to a new location that wasn't anywhere near their original school zone. But it just so happened to be in a temporary building next to Noah's former school. SCORE! Moving him to another school isn't ideal. But one right next to the school he is already used to? I'll take it!
Second. The school hadn't had a TREK teacher for over a year, and it was unlikely they would have one in time for the new school year. In the meantime, the children were in Gen. Ed. and being visited by a teacher's assistant throughout the day. I'm sorry. Come again. You want my son, who has a language barrier, and is delayed due to said barrier, in a class with Normies? No.
The school isn't the problem; in fact, I loved the staff and the chair. But looking at the full picture, it wouldn't have been the best solution for where he is right now in his autism journey.
Noah was officially diagnosed in August of 2023. With that clinical diagnosis, a doorway to the type of therapy that will support him best in his journey was unlocked. It's called ABA, instead of being in school all day, he'll be in therapy. It's not an official educational program. In fact, the only way our insurance will pay for his therapy must have nothing to do with education unless it's directly related to his therapy. In order to keep him from getting too far behind and to avoid the very unhelpful school district we are in, we are now homeschooling him.
I'm sure my future posts will include the trials and tribulations that children on the spectrum and their parents are being forced to encounter on this journey. But this one is just a quickish backstory of our journey so far.