Heart of a Lion: Autism Update
This post is hard to write and to be perfectly honest with you I’ve been putting it off. We took a little break from Instagram and as promised here’s the update on baby Everett’s Autism.
If you’ve been following our journey then you already know that Everett received an official diagnosis of Autism. We took him to the Local Center for Autism where they tested us both for different genetic markers. It will take a couple of months to receive those results, but when we do we will make sure to share them with you. Hopefully us sharing this journey will help someone else who is going or will be going through what we are currently experiencing.
We had a follow up with the specialist physician at the center who stifled our concerns and helped us understand that Everett is a bright little boy who is very capable of living a happy and healthy life. His brain just works a little differently than ours.
Recently, we had a zoom parent teacher conference and there were a few things the staff and teachers brought to light. Things that we didn’t know or could see since he does these things at school.
Everett hasn’t been able to complete one step directions which makes it more difficult for the teacher or staff in a classroom setting. He fixates on a certain action or object and will repeat that action or become emotionally attached to an object that when he is asked to stop or transition to something else he becomes very emotional and has prolonged meltdowns. They also mentioned these actions are usually unsafe, like climbing on top of a table or crashing his entire body head first into the teacher.
As the staff members took turns telling us these things our hearts sank. Laura and I just looked at each other defeatedly.
Everett is such a sweet and loving boy. We never want him to be perceived as the “trouble maker”. Of course the school reassured us that wasn’t the case and that they wanted to work with his speech and occupational therapist to help as much they can to try to bridge the gap for Everett. They wanted us to know these things so that we can work on them at home.... but how? How do we work on them? He doesn’t follow one step commands so what do we do other than redirecting? Which is what we always do. We always try to make eye contact and talk to him, but he ignores or doesn’t seem to get it.
We hung up from the zoom meeting feeling... lost. Maybe this wasn’t the right school for him? Maybe he needs a school with staff that are more equipped to handle children with autism? We began searching to see if such a place existed. Jackpot! We found a school that is paid for by insurance that handles just those on the Spectrum. Everett would have his own teacher and it’s strictly one on one. Sounds so amazing, right? We couldn’t schedule a tour fast enough. This could be the missing link! This could help Everett tremendously. We finally started to see some light. That is until we actually toured the place. No concrete sanitation guidelines and the facility was filthy. I don’t mean the “We had class all day and now the room needs to be cleaned” kind of dirty. I’m talking about the type of filth that builds up over time due to lack of cleaning. Everett would certainly be crawling on those floors, touching those walls, toys, sensory aids etc. And just like that what little light we found was gone. We ended the tour and just sat in the car. Laura turned to me and said
“Could you believe how dirty that place was”.
I looked at her and felt the tears start to build.
So, now what? What does a person do when their child needs help and we are in the middle of a global pandemic? We don’t go anywhere unless it is to preschool or home. We can’t travel to a surrounding state to try to seek help since we have no other options locally.. and now the support groups aren’t meeting until the Covid situation is under control.
It feels like an elephant is sitting on my chest. I stay up at night wondering what else we can do, worrying about new quirks he’s developing. Just this week he’s started sucking his thumb and smashing his forehead to my forehead wanting to sit that way for a lengthy amount of time.
The thoughts are relentless. I’m assuming that’s why I’ve waited so long to make this post... Because we don’t have any answers. In fact, I feel worse mentally that I did when we received the diagnosis. We both just feel lost in it all...but then I reminded myself why I created my blog and Instagram. It wasn’t to pretend that life is easy and create this cookie cutter image. It was an outlet for my feelings and our experiences. A safe place to talk freely about my mental health. So, It is important to share all of the journey.
I know we won’t be lost forever... and I know that someone out there feels the same as we do. My hope is that if anything you’ll take comfort in knowing you’re not alone. That we are all struggling through the darkness to find some light in these kind of situations.
Everett starts Occupational therapy at the center in February. We will absolutely keep you updated on his progress and any tools or tips they provide us with. Everett has several sensory issues, but boy he is super bright and is advanced in reading and counting. That’s something his specialist pointed out after we brought up the parent teacher conference. He is a happy healthy boy and we are forever thankful for that.
For now, we will leave you with this.
Focus on the good, see the strengths vs the weaknesses in your child and remember that being different is a beautiful thing.