You’ve heard me say this over and over. If you have met one child with Autism, you have met ONE child with Autism. Some people may roll their eyes at this statement. But I am here to give proof this is 100% accurate.
When we decided to have another child after Z, we knew the risks. We knew siblings had a higher chance of having Autism, that it can run in a family.
K was born and he was perfect. And he had so much personality from day one (and a great head of hair as well!). As the years progressed and he started missing milestones (those darn milestones!), we would hear “Have you had him tested?” or “You know there is a higher chance of siblings also having Autism?”.
Tests, studies and programs were thrown at us early on. I did sign up for some of them, but lo and behold was never contacted (how’s that for early intervention?).
Did we think K had Autism? We knew something was up. We knew he was behind a bit. We knew the statistics.
But what we also knew was that he was different than Z. That if we had not had the experience we did with Z we may not have even thought about Autism. That if K had Autism, it was a very mild version and if we could handle severe Autism then surely we could handle anything “easier”.
We knew he wasn’t given much of a chance to develop his own path. The second it came up about his older brother having Autism, all his “shortcomings” automatically pointed to that. I remember being in the doctor’s office asking what other things could be at play and not getting much of a response.
We wanted K to have an opportunity to “show himself”. Let’s not put a label on this immediately. Let’s look at where he needs improvement and start there. At 2 years old, he still wasn’t talking. This was obviously an area of concern. So we pushed for speech therapy and got it. We ultimately also pushed for occupational therapy and got that too.
At 3 years old, we attempted to get him enrolled in the special education program at our local school district. Then COVID hit… I won’t bore you with all those details we are all trying to forget. Needless to say we lost a lot of time, a lot of opportunity for growth. Therapy sessions we had were switched to remote and we found ourselves trying to keep a very hyper toddler in front of a screen. His only “peer” example was big brother Z.
At 4 years old, we finally got to start with Preschool (although it was still remote). At our first meeting with the IEP team, they explained that K was eligible for the program. Up to that point all of our conversations were about eligibility due to his speech delay (a very valid eligibility). However, what we ended up hearing was that he was going to be marked with “Autism” for eligibility. We were confused.. We did not have a diagnosis at the time, the school very clearly informed us they could not diagnose, the tests they did as part of intake came back pretty mild. So why would they be using this for eligibility?
We put our foot down. As I said, we were not looking for labels at that time. We were looking for solutions. We asked whether changing the eligibility to a speech delay would change anything they were going to propose and they said no. So again, why are we doing this?
This is the problem. Everyone is so intent on “discovering” Autism at the earliest age while setting aside what the child actually needs. All of those “early intervention” groups? They never contacted me. And in the end, COVID blew everything out of the water.
So flash forward, at around 5 years old, we decided to start the process of an actual diagnosis (for several reasons I won’t go into here). This ended up being just as horrible and lengthy as it was 10 years earlier with Z. This was so disheartening. With Autism being a “spectrum”, you would think the testing would be super flexible and geared to the child. They are not. The tests were pretty much the same as what Z did went through. K didn’t make enough “eye contact” (something we saw as a strength in him) with the evaluator who never once got on the floor at his level. Who talked to me more than to K. Who put toys out but did not attempt to play with any of them to entice K to join in yet marked K as “uninterested”.
Once that was over with, we waited for the results. All along we knew K was more mild than Z. We saw the differences so clearly. Yet when we got the diagnosis, K was marked as Level 2 and not Level 1. Yet another confusing moment. When we inquired about the reasoning for this, it was due to his lack of engagement with the evaluator and the fact he could not talk. Let’s just ignore the amount of communication and engagement he was giving me during the entire thing…
But in the end, we knew it didn’t really matter. The path was set into motion. We now had two children on the Spectrum.
And we now saw what the Spectrum could really be. These boys are completely different. Z was textbook with his actions (no eye contact, lining things up, preferred to be alone, hyper focused on the alphabet and numbers). K is a total social butterfly. He hates to be alone and instead has no boundaries with others. Everyone is his friend and there to help him. He never lined things up or watched how toys work. He always gave great eye contact and was totally engaged in activities with us.
I only knew one Autism with Z. Like I said, if I didn’t have that experience with Z it might not have crossed my mind. And I often think about what path we would be on. Would he have been diagnosed with something else or would we eventually have made it right where we are now?
Would I change anything if I knew this would be our reality? I don’t think so. We were prepared for this. Obviously we wish things were different. We definitely hoped things would be easier. But both boys are who they are. They both surprise me each and every day and we come to this table with so much more knowledge the second time around. We know what to ask for, what to push for, what to decline. Things that K does helps me understand Z better and vice versa.
What we don’t know is the future. For either of these boys. We don’t know if things will get harder or easier. But we are all in this together with the same tenacity that has gotten us through 15 years with Z. We will keep pushing, keep asking for change, for acceptance. We will question holes in the process and do what we can for the next generation behind us.
Because we are their warriors….
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Tilted Axis 