You might say that my oldest, 13, shows some autistic traits. He still has meltdowns if he becomes stressed – usually over homework. He is methodical. He is “overly logical”. He excels at math, science, and engineering.
But it was his younger brother, Xavier, that is autistic. Pervasive developmental disorder not otherwise specified (PDD-NOS) was the official diagnosis. It is part of the spectrum of autism that can vary significantly. He went from being a slightly odd little 1 ½ year old to banging his head for self-stimulation. He doesn’t taste normally. Subtle tastes mean nothing to him. His favorite food is pickles and anything with a lot of garlic. Just today we noticed that his ear had been bleeding, but since he doesn’t feel and comprehend pain, we can’t tell where or why. He has been known to cut his leg at school and only “cry when the bandage was put on”. If it were any normal child, they would have been crying their eyes out when it was cut or at least when it was washed out.
It was December 23, 2010 when we were in the developmental psychologist’s office at 8 am for a 4 hour long appointment. I don’t know if his siblings have forgiven him for this, since they had to wake up at 6 am in the middle of break to go with us.
The week before we listened to the Rady’s Children Hospital Radio-a-thon to hear a mom whose son was diagnosed autistic after eating problems. I took special note when I heard that. Her son, like Xavier, had gone through the Feeding Team and checked out medically why he wasn’t eating properly. We were awaiting test results from what would be the first of 3 biopsies for Xavier at this time and only a couple weeks prior were in with the Feeding Team for an observation. This other mom said they recommended that she take her son to the developmental psychologist. She did and left hearing he was autistic.
I took mental note. Something I would change from “mental note” to “write this one down” notes. So I was mentally prepared if we heard “autistic” on the way out.
The appointment on December 23 was a long one. Numerous questions for me: PAGES of written and verbal questions. Working with Xavier. Playing games with the two of us. It wasn’t the full 4 hours but it was long.
We left there with a yellow stuffed elephant. The first of the stuffed animals Xavier would get for spending the holidays at the doctor’s office. We also learned that the road ahead of him made a sharp turn and we will have to work to get him back on the “normal track”.
I was blessed to have a lot of friends that work with special needs families, and friends that have special needs children of their own. By January 3, I had an application for SSDI in and had contacted the San Diego Regional Center on how to proceed with getting him the services he needs. We were denied for SSDI but Regional Center walked me through what are Xavier’s options. I worked with our pediatrician, who told me this is time to stop crying and become Xavier’s fighter, to decide on the best method of treatment. We chose, and I pushed for, Alexa’s PLAYc at Rady’s. They were amazing. Xavier grew so much over the year he spent there.
This is my story. This is Xavier’s story.
Why do I not care so much as to the “reason of the week” that is the cause of autism? Because no one knows. We have seen specialists galore, gone through different studies, and yet no one can explain to me what caused Xavier’s autism. Until they can, I won’t care about these “studies”.
What I will do is help others try to get their children the early assistance that I have seen make a huge improvement in Xavier.
Like I said, he could count to 10 and had a great little vocabulary before it fritz’d as I say. It was like part of his internal hard drive got corrupted. Now he is on the way back from that. His vocabulary is growing. He is saying longer sentences. He isn’t banging his head, but instead asks for head hugs which is someone putting pressure on his temples. He sometimes hides in tight dark spaces when the world gets too much for him. He is almost fully potty trained, something that we were not expecting to be anytime soon because of his lack of feeling. He is teaching us what works for him and how we can help him. He will still lick everything for the texture sensation and spin around in circles forever if we let him.
All I ask is that people start helping these young people. At some point we will find the underlying answer. We don’t need an “answer of the week,” which some are just ridiculous. Yes I got sick during my pregnancy, but I was much worse with my oldest. Yes I was exposed to harmful fumes, but probably 100 times worse when I was pregnant with my daughter and working at a local casino, and she shows no signs of being on the spectrum.
Please don’t say that these kids need to be removed from classrooms. They don’t. They need what every other kid needs, parents that participate in their education. I was in shock to hear that this year was the first year that any special ed parent wanted to volunteer in my son’s school activities. Really? I do this for my older two, why would Xavier be any different?
Autistic kids learn like every other child, sometimes better. They may not have the social skills now, but it is something that they can learn in a standard classroom setting. These are smart, sometimes mischievous, kids with a future ahead of them like no other. Let us let them grow and thrive. Let us help them become the people they are meant to be. Let us throw, even a quarter of the money spent on these ridiculous studies into Applied Behavior Analysis therapy, social therapy, music and dance therapy. These kids see others their age and want to do what they do. Let us work towards that.
And next spring, when you see the 4 year old playing baseball but not looking where he throws the ball, know that he doesn’t like looking at faces. But also know that this kid will probably be the first one picked for any baseball team because he has skills and a mom that will be there for him every step of the way.