This won’t be brief, but if you’re curious how Obie received his official diagnosis (dx) it will be detailed here.
At 18 months we had a check up with our pediatrician. As is customary for that pediatrician (and probably most) we were asked to fill out a survey of basic “screening” for autism concerns. Questions like how many words, gestures, etc. were asked and Obie was “red flagged” on multiple questions. He wasn’t speaking much or expressing his wants/needs as they would expect.
We were referred to a developmental psychologist. I started calling around and got on a handful of waitlists, but the times were so long and I’m not what you would call patient.
I kept digging and found someone who practiced less than a mile from our home, was on my insurance, and could see him within a week!!!!
After filling out about a million questionnaires we were seen in office. At the end of our hour together, Dr. R. told me, in plain terms, that she believed Obie was “slow and would always struggle.” She immediately ruled out Autism as did almost every professional we would see in the time between this appointment (January 2014) and September of 2016. His dx was Global Developmental Delay and Cognitive impairment- at risk. She sent me home with homework on contacting AZEIP, DDD, and a bunch of other acronymed agencies.
I was 9 months pregnant, hormonal, emotional, and stressed. This was a very hard time for me, and I grieved that news. I’m so thankful for this dx. It was scary and brought about so many worries and such sadness (the sadness was more how hard life might be for him, but it was also because I had a plan for how life would go for my kids- this didn’t fit), but it was the reason we pursued services and it opened the doors to what we have today. Dr. R. used verbiage and labels that aren’t used anymore because they are deemed insensitive or politically incorrect. But in her use of those words and phrases it pushed me to action, so I will always have a special place for her in my heart.
The next year or so was a blur. In the process of seeking services we discovered hearing difficulties that we finally determined was due to fluid. So surgery to place tubes all took place as we had him cleared for services through ddd, AZEIP, and he began preschool. We tried and failed to get ALTCS, so I let ddd go, and AZEIP ended when he was 3. We saw Dr. R. again for sleep concerns and other sensory oddities, but her conclusion was ADHD; when she began to talk medication, I began to not hear her. I just didn’t believe my 3 year old was ready for that step. We had school, which was great, but it still didn’t seem to be producing the progress we would expect.
In this time Obie began to communicate more, which was awesome, but his speech was flat in nature, repetitive, and scripted. I’ll write a whole post on his speech because I find it so fascinating!
There were other concerns like the inability to dress himself, outbursts, short fused anger, and sensory concerns.
As I spoke more and more with a friend (who probably knew he was autistic before I did) she began to share more and more articles and blogs of kids who sounded very familiar.
I began contacting ddd and ALTCS again because I just knew it was time to figure out how to help Obie.
I also contacted PCH’s developmental psychologists and got on their wait list. In March I was able to snag an appointment for June (2016)! We were seen, asked to fill out questionnaires, and referred to genetics for testing. By a truly miraculous twist we were able to be seen by genetics and tested within a week of a call because of some cancellations.
At the same time I began to pursue an evaluation with another psychologist. I just felt like we needed two opinions and it was a race to get it before insurance changed.
The other office was finally where we needed to be. They picked up on indicators we didn’t and really honed in on what his autism was for him. In a brief meeting before the test that would put concrete numbers on his dx, she asked if he ever looked at me. I said yes, all the time! She said, I know he looks in your direction, he gets your attention, but does he look at you? A whole new element of his autism opened up that day. I truly had no idea (and neither did most of the doctors he had seen for almost two years) that he wasn’t making true and sustained eye contact. You see, Obie has an outgoing and playful personality, and a dimple. He has the most incredible dimple. I think his personality masked his ASD (autism spectrum disorder) and fooled most doctors because they are under the false impression that autism is social aversion. More on that later.
Most people think that a dx of ASD would be devastating- to some people it might be; to us, we were just so incredibly thankful that we finally had answers.
I think it’s fitting that this picture was taken in an urgent care waiting room on a Sunday. Because ear infections are still real parts of our lives.