Today was an extremely hectic day at our house. Brody started Kindergarten Jumpstart at South Park. He was excited but nervous as this is a new unfamiliar chapter, as it is for every new little boy and girl who enters their new BIG school. I was excited and nervous for him as well, but more or so torn because today more than ever, I wanted and needed to be two places at once.
Today was the day my precious twin boys were evaluated for Autism at the Thompson Center.
As I left the house this morning, my nerves were shot, I was shaking and just could not knock the queasy feeling of all the unknowns that we were about to receive answers for. Today was the day I would find out if I had 3 boys who would be on the Autism Spectrum. Ok, so I might be not telling the entire truth there. Today I would find out if I had 2 or 3 children on the Autism Spectrum.
Chase and Peyton are identical which means they share genetics. Brett and I were 99% sure Peyton would test positive and fully expecting to get a diagnosis. We were READY to get the diagnosis because that would mean it was on paper and he could receive the more invasive therapies he desperately needs. You have to have the label to get the services.
Because the twins are identical there is an 88% chance if one got diagnosed, the other would as well. I’ll tell you, we held onto hope that Chase would be that 12%. Not because we didn’t want the label but because in our hearts we didn’t know if he was or wasn’t. And we tended to lean more towards a no, that he wasn’t.
Out of all our children, Chase has been more ahead of them all. Talking more. Interacting more. Socializing more. Communicating more. All the opposites of Peyton and more ahead of Brody at this age.
Now I will say this, it’s not at all fair to compare your kids. I don’t agree with it for one second. But when you have children who don’t progress “typical”, that’s all you have. We had no idea what “typical” looked like. So to us, Chase acted as “typical” as we had witnessed of the three. So our hope was strong for him, as I think everyone’s was.
The testing this time around was different than Brody. Mostly because we had twins but different because Brett was with Chase and I was with Peyton. So I didn’t get to see Chase’s evaluation. When I got back to the room with P, Brett walked in shortly after with Chase. Brett said Chase did great and felt that the assessment went well and that it painted a clear picture of him on a daily basis. I told him I agreed about Peyton and we both felt pretty good that they got to see the boys in true fashion.
Our wonderful Dr. Sohl, who sees Brody regularly entered the room. We talked about both boys in depth, going back and forth, back and forth.
Peyton’s diagnosis came with no surprise. I was prepared. We were prepared. Brett and I had never said “if he gets diagnosed”, it was always “when he gets diagnosed”. That may sound weird but we just knew in our hearts. We discussed his plan going forward. In depth ABA therapy, more speech and more OT. We also go back to see Neurology for his tremors that have been flaring up again, along with a sedated MRI to check for silent seizures. At this time they will do blood work and ultrasound a lymph node that has been enlarged for 6 months. His game plan is intense and it’s gonna be hard. He’s not gonna like what’s about to happen, especially the ABA therapy.
But you know what is the most amazing quality about Peyton, he’s resilient. He’s tough as nails. He’s fought for his life when the odds weren’t in his favor. And he won, just like he will continue to do in his future. He has overcome so much in 2 years that most of us don’t endure in a lifetime. He’s fallen, hard. But has always went above and beyond, rising above the goals set before him. Peyton’s road will be different as he faces new challenges that are unfamiliar to Brett and myself. Listening to the doctor say that his progress will most likely model a “stair step”, where he makes progress and then kinda hangs out for awhile. It gave me a weird sort of familiarity that somehow didn’t manage to surprise us because this is what he’s done his whole entire 2.5 years on this earth. Peyton does things on Peyton’s time.
Always has and always will….
We moved onto Chase and I could feel the uncomfortable silence set out before us. Dr. Sohl was well aware of the hope and faith we had for him, the 12% chance that our third child wouldn’t be diagnosed. But today God had a different plan than the plan we had prayed and hoped for. Our third and final child Chase Michael was diagnosed with Autism Spectrum disorder. Dr. Sohl pulled out a scoring sheet which she doesn’t show to any parents. She told us we were actually the first she had ever shown. But she showed us so that we knew Chase was evaluated as Chase. My biggest fear was that he wouldn’t be treated separately. I was scared that research and the genetic
component would be a deciding factor. She wanted us to know that although Chase had an identical twin brother being diagnosed with Autism, that he was being evaluated as his own individual. She knew and could see the heartbreak in our faces. Her exact words, “I have done everything I can to not see it in Chase. But unfortunately it’s just there.” This is about the moment that I kind of lost it. I looked to Brett and could see his the tears forming in his eyes as well. We were both crushed. It was the blow that we just weren’t prepared for. It was that lump in your throat and nauseous feeling you get when hearing news that you had prayed to not hear. Praying to God that you could have just one child not go through this difficult path that can cause so much stress on their life.
Going forward, Chase will have more Speech. That’s mostly the extent of his plan for now. As bad as I didn’t want to know about Chase today where we were sitting in that room where the walls felt as though they were caving in. Deep down we know as a family that we had to know. You have to know and hear that hard news to get you kids the help they deserve. As the weeks pass and the wound isn’t nearly as fresh, I know it won’t be nearly as hard as today was.
The entire way home from Columbia I was in a fog. Today I have mostly been in a fog. Ignoring almost all messages, phone calls and notifications. Trying to process the information has been extremely overwhelming. Listening to our hour and a half deep conversation with Dr. Sohl that we recorded was tough. We tried to listen again and made it about half way and had to shut it off. The tears have came and went and returned again. We always know that our life can be worse but just not at all wanting to hear that today.
Today just really sucked.
Brett and I have decided to go forward to seek a Geneticist. With three boys in a row with ASD, it’s a pretty crucial piece of this puzzle. We know now after talking with Dr. Sohl that with advancements in research that MAYBE we can find out the core of all this. And we also know that we can find out nothing at all, which could make this even more frustrating. All 5 of us will be involved in this and at this time we are unsure how that will pan out. But if it in any way can help better find the boys specific root with each of them individually, then it’s something we have to do.
We are now the proud parents of three boys who are on the Autism Spectrum.
Three beautiful boys who have enriched our lives, taught us more than we could have ever imagined and a love deeper than we’ve ever known.
We have a lot of work to do and a lot of bumps and curves ahead.
We will continue to seek every avenue and explore all options…
Until all the pieces fit;