As you all know, my son Billy was diagnosed right after his 2nd birthday with moderate/severe Autism and Sensory Processing Disorder. What many people don’t know is our journey we took to recognizing that something just wasn’t right with Billy’s development and what we had to do to get him the diagnosis and help he needed. This is our story of that journey.
Billy was born 3 weeks early.. A healthy 6 pound baby boy, who had a little trouble breathing in the beginning. He was on oxygen the first 24 hours, but after that he was fine. He grew up hitting all his milestones on time the first year of his life. He was a very happy, smiley all the time, loved his Mommy, Daddy and Sister, little baby!
After he turned 1 year old, we started to notice that Billy stopped saying some words. At first, just BABA and MAMA went away, so we thought maybe he just didn’t want to say them anymore. Than DADA went too and more difficult words he had been saying, like Pop-Pop.. By the time Billy turned 16 months old, he was no longer speaking at all. He was also not hitting milestones like he should have. He wouldn’t point to anything he wanted or needed, wasn’t answering to his name and wouldn’t make eye contact with anyone. Than we noticed a very upsetting behavior, when Billy would get upset because he needed or wanted something and couldn’t tell us what he needed, he would walk himself over to the tiled kitchen flooring and band his head repeatedly on it. He did this so much that his head was always bruised and had big welts on it. It was than that I knew something wasn’t right and had a feeling my son had Autism.
When he was 17 months old, I made an appointment with our pediatrician to discuss my concerns. My husband and I went into her office and told her all that we noticed with our son. She was very caring and listened to everything without interrupting. After telling her all our concerns, our sons pediatrician gave us a small questionnaire to fill out and leave with her. She would review it and contact us with results. Within 24 hours, she called me back to state that the results did show concern with Billy and that we would need to set up an appointment immediately with a pediatric neurologist. Setting up this appointment was no easy thing. I called 5 different places and everyone had an 8 month to 1 1/2 year wait to see a neuro. I got a call back from one neuro, they had a cancellation and were able to get us in within 3 months. This was a wonderful thing! I took that appointment right away. I was also told to call our county’s Early Intervention Unit and set up an appointment with them.
We showed up to the neuro the first day and we were put in a room with several toys and items. The doctor first asked my husband and I questions about Billy’s background. Than she proceeded to interact with Billy. After observing how he reacted to things and instructions, she stepped out for about ten minutes. She than came back and let us know that she does see some concerns with Billy’s development and needed to schedule a pysch exam for him. When we left the office, we felt like we were on the way to getting an answer.
Our psych appointment was set up for a month later. While we waited for that, the Early Intervention Unit came to our home to evaluate Billy. After their evaluation, they came in to let us know what they saw and what therapies they wanted to set up for in home for him. Billy would have Speech, OT and DI every week. His therapy started a month before he turned 2.
When he turned 2, we returned to the neurologist office for his psych evaluation. My husband and I sat in the room with him, but were not allowed to speak at all or interact with Billy. The whole evaluation lasted about an hour. Than we went home to await our results.
Two months after Billy’s 2nd birthday, we got our results in. Billy was diagnosed with moderate/severe Autism and Sensory Processing Disorder. Now I have to be honest, as a parent, even though I kind of knew he would be diagnosed, once you hear that diagnosis for the first time it still makes you a little sad. I cried for a few minutes for my son. I than wiped my tears away and began research.. I asked his therapists about his diagnosis and what they felt he would need from us. I read about his diagnosis and what we could do to help Billy grow and thrive. I became my son’s biggest supporter. I knew that day, that Billy’s road may not be a super easy one. But, whatever he needed, I would be there to make sure he got it. He is even more amazing now than he ever was! He is my little man and Autism is just something that makes him that much more awesome.
Billy is now 3 1/2 and thriving. He is speaking some words and recently, putting two or more together. He is using a picture exchange system to let us know what his needs and wants are. He looks us in the eye and has finally begun to answer to his name about 75% of the time. He is a happy, healthy, thriving little man! He no longer bangs his head on anything. He is the sweetest, super snuggliest little man I know (just ask any of his therapists.) Billy now gets therapy 5 times a week, we have an SI, Speech, OT and Behaviorist. I am so thankful to them for all they do for my little guy. Therapy really is an amazing thing.
The almost 8 months journey to my sons diagnosis was a big one, filled with some tears, worry and loads of hugs. But, it was all worth it in the end. I thank God everyday for giving me both my kids, for the amazing little man my son is and the awesome man he will grow-up to be one day. Because of him, I started this blog and it has gotten me in touch with so many amazing Autism families out there. I am thankful for that too.
So, if you are on your journey to that diagnosis for your child, all I can say is hang in there.. It may be tough at times, but it will get your child the help they need and will get you answers you want.
Thank you to everyone who supports my son and I in this journey. To my husband who has been nothing but supportive and amazing with our kids, to my daughter who absolutely loves and adores her baby brother, to all of Billy’s therapists who are helping not only my son, but also myself, learn and grow. To my family and friends who have supported us and done nothing but give their love to us. To all of the amazing Autism and Sensory families out there I have met along this way, we are all there to help each other and I an thankful for that! And, to all you who are following my family along this journey. Thank you all!