Meet Russell. He loves trains, cats and dogs, legos and the iPad.
Russell greeted me by rushing down the stairs and beaming with a big bright smile. The type of greeting I could really get used to! Russell quickly rushed me off to his bedroom to see his toys and that was that-we were friends 😉 While I was visiting I had the privilege of meeting Russell’s mother, one of his ABA therapists and his sweet little sister. They were all so open and so welcoming. I think often about families who are receiving treatment constantly having people come in and out of their homes and am always so humbled to be invited in.
As I mentioned, Russell was immediately ready to play and interact! I got to observe a little bit of a therapy session with his favorite therapist and then we went downstairs to play.
Since Russell and I became friends, I let him take a picture with my camera. Here is his capture of his train tracks, very artistic as you can see 😉
It was really fun to see Russell’s connection with his mom and little sister. He loves them so much, when they entered the room his eyes would just light up!
I love it when parents give me insight to their children and including their words in these blog posts is really important to me, since, after-all is their story. Here are some pieces of what Russell’s mom wrote about their journey to diagnosis:
“Russell was diagnosed with Autism Spectrum Disorder last March, 2014, he was 2-1/2. His language never developed. We kept waiting for him to use words, any words but they never came. He had the words for Mom and Dad but we never heard them unless he was in distress. Initially our concern was with speech. Slowly he had a few words but they were always just an approximation and he would rotate the few words he had in and out. Once we started the process for speech therapy, it started to become more clear that something was more off than just a typical speech delay. We started occupational therapy and speech therapy on a regular basis but the words never really came and his behaviors became more and more unusual.
He was walking on his toes a lot, he would spin in circles, everything went into his mouth long past the typical oral fixations that babies have. He would often crash into the sofa and other objects, he would become more and more clumsy the more revved up he would get. He became a bit of a danger to himself. It never occurred to us that it might be autism because he was so friendly and loved to be around other children and people. The more I researched about ADHD, sensory processing disorders and Autism, our picture of his diagnosis became more and more clear.
The testing and waiting period to get the diagnosis was long but it was a huge relief when it finally came. There was definitely a grieving period and a fear for what the future holds but we overwhelmingly felt relief. relief to have a better understanding of what was happening with our child. And relief that we could now move forward and get him the appropriate treatment that he needs. We feel very blessed that we figured it out early and he is getting the treatment at such a young age. We have full confidence that he is going to be just fine.
We all try real hard to recognize all the positives. Like most children on the Spectrum, Russell is incredibly smart and we look forward to what he has in store for the future. When we initially received the diagnoses it was very difficult thinking about the future. An Autism diagnosis felt like a death sentence. We have become very understanding and now recognize that his future is very bright. We have many struggles on a daily basis but we’ve learned that he can accomplish all the same things that other children can do, we just might have to go about it in a different way. Everything I had planned and thought about doing as a mother has changed. All those parenting books, articles and advise meant to guide me on how to parent, needed to be thrown out the window. We have to be problem solvers all the time and be very patient and understanding.”
I really appreciate her openness and honesty regarding the diagnosis process. It is a story heard again and again, parents relieved to know what is going on with their child, while still feeling struck with grief. I think if we continue to share stories of individuals with autism and the many forms it takes, the more hope will be cultivated. The more understanding there will be amongst these children’s peers and their parents. This, of course, goes hand in hand with breaking down stereotypes. This has kind of been the unofficial theme of the autism project this year. I think that Russell’s mom brought up a great point when I asked her about common stereotypes they encounter when talking to people about autism. She says:
“Some children are more severe than others and unfortunately the media tends to concentrate on the lowest functioning cases. It’s because of this poor representation that many parents feel the way I did when we received the diagnosis, as if it was a death sentence. This is why there are many parents who remain in denial about the quirks that their child has. Many parent will rationalize the symptoms and not get the help their child needs at the age their child needs it the most. They only know the extreme cases and say that their child is not that.
When I tell people that Russell is on the spectrum, most people apologize and say how sorry they are. Some people ask if flaps his hands in front of his face. Some people who have met Russell will tell me “No, that can’t be right. He’s so friendly and gave me a big hug!” I just wish that the media did a better job of educating people on ALL the varying degrees of Autism and not just the extreme ones.”
There are so many beautiful people touched by autism and everyone of them is so unique. It’s a beautiful thing, that something that is so diverse, can bring so many people together with it’s similarities. I am so happy to have met Russell and know his future is every bit as bright as everyone else’s.
I’ll leave you with this lovely boy’s sweet smile!