I pride myself on being open, honest, and relatable…. Using this blog as a place to show the vulnerability and sadness, and the complete joy and happiness, that comes with being a special needs parent. 

But I have not been honest with you. For almost two years we have known–Sam has autism. 

This news was not shocking to us. In fact, Adam and I were the ones to push for the testing. However, it was still a new diagnosis. One more thing our little boy would have to battle and overcome. A LABEL. No longer could we chalk his behaviors up to prematurity and all of his illnesses…. No, now we had a diagnosis, and with that diagnosis we saw the opportunity for more help and more programs. 

But we still couldn’t bring ourselves to tell anyone but our immediate family. Perhaps it was because Sam’s diagnosis came just weeks after Claire’s diagnosis and the last thing we wanted was more pity. Maybe it was because we thought he would get better and improve over time and no one would “notice.”

Why are we telling you now? It was time. We are doing the best we can as a family of two kids with special needs and for that to happen, I need to advocate and spread awareness. Neither of us wants our kid labeled, and we don’t want anyone treating him differently. Our family motto for both Sam and Claire is, “They will live in our world; we won’t live in theirs.” 

Sam is very high functioning on the “spectrum,” and for that we are grateful. However, the challenges we face as a family, and Sam faces as an “autistic kid,” are numerous. Public situations make him uncomfortable — There is lots of screaming, yelling, and inappropriate behavior. As soon as his meltdown is over, he’s apologetic and sorry for his behavior. It’s hard for him to be social and relate to peers his age — this is perhaps the most defeating part of Autism for Adam and myself. Both of us are very social; Jack and Eli are very social; and while Sam absolutely loves being around people and wants to make friends, it’s hard for him to relate to other kids, and for other kids to relate to him.

While in Omaha, we started ABA Therapy. Our therapist was absolutely fantastic and leaving her was perhaps the hardest part about our move from Omaha. We were dealing with so much as a family between Sam and Claire, and just months before our move we *finally* got matched with a therapist. She was a godsend. And then we moved. And life with autism went to hell. His outbursts have increased; our stress has increased. Adam and I are struggling as parents and as partners.  Our insurance in Denver is abysmal, but we are exploring options for ABA therapy and praying for a miracle. 

At the end of a particularly long day, Adam and I will collapse into bed, my eyes often filled with tears. I’ll ask “Why” a lot, and vent my frustrations. But every conversation ends like this– there was a time when we were told Sam wouldn’t survive. There was a time when we were told Sam would never walk or talk. There was a time when we were told he would never have a “normal” life and almost certainly have Cerebral Palsy. In the grand scheme of things, Autism is minor. Our son is ALIVE and HAPPY. He’s probably the happiest damn kid I know.

I beg you, when you see a kid acting out in a grocery store, don’t immediately jump to the conclusion that he is just being a naughty kid and his parents need to discipline him. Who knows? Maybe he’s just like Sam and his parents thought to themselves, “Today. Today is the day that we will go to a store and not be embarrassed and sad. Today is the day that ____ can go out in public and not have a meltdown.” Please consider that those parents are good people, who are dealing with a lot.

Sam did not choose his Autism any more than Claire chose her Down syndrome. His behaviors upset him as much as they upset us. He doesn’t choose to be “naughty”. It absolutely kills us after he has a meltdown, because we know he can’t control himself. We are working on it, and it will take time.

Please ask any questions you have. It’s my mission to keep the dialogue about Down syndrome and Autism open. We have a unique family, and a unique platform.