My son was diagnosed with Autism just shy of his 2nd birthday. Although a little unsure and annoyed that the 30 minute observation of my son performed by Dr. Mi-Yo Jung in a small office… she was able to come up with this diagnosis so quickly. I had been with my son for the past 2 years and he still left me in wonder everyday… but what would I know, I’m just the mom. As much as you don’t want your child labeled - thanks to this judgmental world - we were thrilled to receive the Autism diagnosis. Fortunate to have friends we grew up with having gone through what we were about to, we had been schooled. We knew getting this diagnosis would allow us to receive the services we needed to help Caden. We left that day running full speed ahead, without taking a breath or looking back.
All Regional Centers have their own requirements after giving a diagnosis. Harbor (HRC), where we were diagnosed, required you to attend an orientation that was held twice a year. My husband and I had no idea what it was, nor did we care. We already had Caden doing ABA therapy for a few months now twice a day, 8-12, 1230-430. It was a full day and a full-time job for me, especially since I had Kyle who was 4 and a new baby. We entered this room that was cold and quiet. The 7 couples took chairs in a circle and held close to their significant other. The leader of the group introduced herself and explained what the night would entail. Basically we were going to “tell our story”... and then share any challenges and ask any questions or concerns. One by one the couples shared. Tome and I were not by choice, last. As the stories were told, I could not help but empathize and my heart broke a little with each one. All of these families had unique stories, but they were all very severe … I heard stories of a toddler who would harm himself, whether scratching at his skin to make himself bleed, or hitting his head so hard on the wall they had to have him wear a helmet at all times. Through tears these parents shared. The majority of them had just received their diagnosis within days of this meeting and had not had the time to digest like we did over the 3 months. Another mom shared of her daughter being vitamin deficient and would not eat. She would lick the stucco walls on the outside of her house. She has something called Pica - an unnatural craving for non-food items like dirt, clay, ice or starch. Kids with pica are often seen licking the ground, floor, paint, glue, hair or other unusual items. The mom cried as she said her daughter was stick thin and they could only get her to drink ensure.
When it is was our turn to share, I was a little nervous and to be honest, embarrassed. Caden was a pretty “typical” kid...whatever that means. Yes he didn’t make eye contact all the time, and would tend to overly focus on the tv or ipad, and he didn’t always answer to his name, but he was a happy full of laughs toddler who had some setbacks. When we shared about things he did around the house or any unusual activity… our list was minimal. He would occasionally play in the dog’s water bowl that was on the kitchen floor (he loves water). He would rock himself on all fours hugging his blanket in his crib… and most of the time bang his head (not hard enough to hurt himself) on the side of the headboard. I felt at that moment, in a room that was a “safe environment”, even then I was being judged. We did share of our 3 month head start journey, and all the parents had questions for us… we were in the trenches. These families were devastated with their newly diagnosed child. They were scared of the unknown and what lied ahead. We gave them hope. The majority of the families that sat there were families that could barely afford to put dinner on the table every night. I had a pit in my stomach knowing the extreme financial burden that they would soon learn. We had been paying since day one, out of pocket for our therapies. The regional centers usually drag their feet as long as they can, to delay the process of them funding any help for our kids. We knew that early interventions was key, and did whatever we needed to to start our journey with Caden. Everyday was a day of opportunity for growth, we took advantage of every minute, every second. I do not know how to describe what I was feeling in that moment, listening to these families. They did not know the questions to ask, or the services that were out there to help them… they were in the dark, and had no one to help them navigate. They didn’t know what they didn’t know. I always said that the regional center - even the school districts, prey on the stupid. Although that does not sound very nice, it is true. The state is not going to shell out money if they do not have to. They are not knocking on doors saying… “Did you know we could be paying for 100% of your therapy, and we have another program you can take full advantage of that would really benefit your child…” Of course not… Unless you have educated yourself, or have been fortunate to know people whom guide you… you are in the dark.
I think at this moment is when I knew I wanted to help families with any bit of information I could. I am an open book when it comes to my kids struggles and what we go through. A diagnosis doesn’t change who your child is. It is information, and what you do with that information is up to you. A diagnosis is a gift, a direction to take and an opportunity to open your eyes and see all the greatness in your child. I have choose to not let my kids just survive in this world… but spread their wings and soar… they will thrive!
and we would have