An April To Remember
“We say goodbye to April but not to autism.” I read those words recently from another autism mama that I follow on Instagram, and they have totally resonated with me. I love getting to wrap up this month every year by celebrating his life!
At the beginning of this month I said that I’m not really here to bring awareness to autism because I’m fairly sure everyone is AWARE of it. To me, it’s more about shedding light on autism (some might call it “educating”) so that Carson and kids like him are included (not just “accepted“ or “tolerated”) in the world they already live in.
I could have shared every single day of April about different things in our autism journey…and still not shared it all, but I decided that would have been a little overwhelming for everyone, so I wanted to share 10 things here, some from the autism community as a whole based on our personal experience and some specific to Carson and our family!
It’s called the Autism SPECTRUM for a reason. Dr Stephen Shore, an advocate and person with autism said, “If you’ve met one person with autism, you’ve met one person with autism.”
On that note, what YOU know about an autistic individual might be different than what another individual will be like, but telling someone that their child “looks so normal” or that “he doesn’t even act like he has autism” isn’t helpful, and is in fact harmful.
There’s not a cure. Period. And to be quite honest, we aren’t looking for a cure! Organizations that are out there raising money to “end autism” or “treat” it aren’t ones that will receive our time, energy, or focus. Carson doesn’t need to be cured or treated…he doesn’t have a sickness or disease.
While there isn’t a cure, there are certainly therapies and resources that HELP our loved ones with autism. There is speech therapy, occupational therapy, sensory rooms, sensory friendly times devoted to allow autistic individuals to safely participate and so much more. These things don’t need to train Carson and others on how to behave a certain way or mask their differences. We want Carson to be his own individual self while growing and progressing, gaining independence and ensuring his safety.
Those therapies have been KEY in Carson’s progress, and because of that, we are big advocates for EARLY intervention. Carson’s delays were massive in the earliest months and years of his life. He wasn’t walking, talking, or eating. I can’t imagine how far behind he would be had we just “waited it out” as so many encouraged us to do… Some don’t receive any services until they being the public school system. For Carson, that wouldn’t be until this coming fall.
For us, early intervention came through ECI. It can look different for each family and there is so much information out there. It comes through advocating and fighting for your child. If your child’s care team isn’t listening, then move on to someone who will listen. We’ve been blessed with a pediatrician who fought on our behalf and always listened, but I know not all doctors are like that. We’ve gotten all the referrals we needed and have a wonderful team at Cooks we have loved. YOU build your child’s care team, and it isn’t something that will come easily, but it is so worth it!
On top of those in his care team, we’ve added educators. Carson turned 3 on a Friday, aging out of ECI, and he started with Mansfield ISD on the following Monday. He has a speech teacher, an OT, a classroom teacher and 2 aides, among others, that have continued to encourage the progress we worked so hard for in his first 3 years. Mr. Wray tops the list, as Carson has had him as a classroom teacher the last TWO years!! He is one of the top reasons Carson’s grown in the ways he has and we are SO thankful! (Both Carson’s Pk-3 and Pk-4 original teachers left randomly and without notice, but we know it was God at work all along!)
There’s the medical team, the educational team…but the real team that keeps us going is the village around us that love us and care for us, and they are all Carson’s biggest fans. I love to watch people watch Carson or tell them stories and watch them laugh at something he’s said or done. Our boy brings us SO much joy, and watching those around us experience that joy too is one of my favorite things! We’re thankful for so many for all the help they give us in so many ways, and we couldn’t do it without them.
Sleep!! SO MANY in the autism community struggle with sleep, and most of the time it’s that they just don’t need much. Going to sleep and staying asleep are struggles and it is certainly something we’ve seen in Carson. He would wake up at all hours of the night/early morning ready to go for the day, but it left Brad and me completely exhausted. So we did what was best for OUR family, and rearranged how everyone sleeps. It's not ideal and likely makes no sense to many, but currently - all 5 people in our house sleep through the night and we are ALL better for it!
Not just in sleep, but in every area of life, you have to find what works best for YOUR family and your individual with autism. Sometimes it will be for safety, sometimes it will be for pure sanity, and other times it will just be for satisfaction…but doing what is best for your family will never be the wrong thing, despite what others around you might feel. (For example - Judging a family because their child is on the screen at a table while the family eats out at a restaurant…I know families that don’t allow screens outside of THAT specific time so that it can be used as a tool to help the child…but what others THINK they are seeing is a child that is on their device 24/7, completely unable to separate from the screen.)
Music has been a game changer for our boy. I could see it so early on. I said it on the days that I was barely hanging on to hope, willing myself to believe that it would get better. Our little boy seemed locked away inside himself, and it was so hard to see beyond, but the music would come on, and I would see little flashes of life. As he grow, so did the flashes, until he would dance and sing and act out a whole world of play. His speech grew along with it, and we could see his mind and his imagination in the ways that he interacted with the world and people around him.
I’ll share more on the topic of special interest at the end of this blog, but most in the autistic community have some type of special interest in one way or another - but as it IS a spectrum, this isn’t always the case. ;) And Carson has a few!One of the most humbling, overwhelming, heart-bursting pieces of all of this is watching Carson’s big brother and big sister love on and encourage their little brother. They are advocates for him, educators for the world around him, and they are truly better for having a brother with autism. It doesn’t come without hard days, big feelings, and some tears - but they love him fiercely and their relationship with Carson is shaping their world and their future. It will have a lasting impact and a ripple effect we can’t begin to imagine. (Bryleigh has often said she wants to be an art teacher or an art therapist to help others like Carson, and I can absolutely see her doing that.)
A few more things, unique to Carson:
Carson has a genetic abnormality (a deletion on the 22nd chromosome) that is rare enough there isn’t any information out there about it. So we don’t know what stems from it and we don’t know what all is ahead for our boy.
Autism could be linked to that (or it might not be). So could his precious birthmark that continues to grow and show up in other areas of the left side of his body. So could the sensory processing disorder he has that keeps him from feeling pain and made it hard for him to eat the first three years of his life. Watching him stand in a pile of ants and stripping him down as fast as we could, getting bit in the process, because HE couldn’t feel the bites happening was a wild, eye-opening experience.
Special Interests for a Special Boy!
My favorite question someone asked at the beginning of this month came from one of my friends who asked about Carson’s “special interests” - specifically in regards to how it makes us feel.
Carson LOVES bounce houses, Blippi, and music (including the music videos of Danny Go).
As his parents, we LOVE knowing how to make our boy happy. Buying a second bounce house and seeing him light up when he saw it the first time is hands down one of my favorite days ever! We love him SO much and it is so much fun to see him so full of joy, but as a mama, my friend knew it doesn’t always feel quite like that. It can be overwhelming to HEAR him mimic a blower for HOURS as he pretends to blow up and release a bounce house. My house is constantly a mess from his “imagineering” as he dumps whatever pieces he’s no longer using for the new “prop” he’s picked up for the moment.
But the two most affected by his special interests would definitely be his big brother and sister. They often don’t get to pick songs in the car or shows on the tv. They spend hours listening to him sing and talk (very likely his “stimming” although it looks different than others). He can destroy their rooms in about 5 seconds flat as his little tornado-self rips through leaving his creativity behind in a mess. They are both young, and I have to often remind myself of just how young they are.
We’re all growing through it, but we’re also so thankful for it and wouldn’t have it any other way!!
