This week feels like one long Monday that never ends.
Today Ryan and I scampered over to CHOP for Ryan’s possible autism diagnosis. We arrived at 11 am for a 90 minute evaluation and we left about 4 hours later. After hours of interviews and conversations they told me that, they are not sure if Ryan has autism or not. They agreed his behavior was worrisome and It was important for him to be evaluated. They said at times Ryan had conversation reciprocity and other times he did not. The doctors agreed he has sensory issues, but hey decided to do more testing before deciding if Ryan has autism or not. They scheduled him for a Autism Diagnostic Observation Schedule which is a test with Ryan and an evaluator in a room playing. The test is videotaped and the Dr’s then will decide what they think may or may not be a diagnosis for Ryan.
There are a few more worrisome issues. Ryan has been eating pencils. I know, how weird. They decided to take blood and check his lead level and other blood counts. Ryan for a super athletic kid had a sudden decrease in muscle tone. Both Ryan’s BSC and I have noticed it. He has been having trouble controlling his muscles like he used to and is running considerably sl0wer and is less coordinated than he was last summer and fall especially for a kid who gets so much activity in a week. They suggested we go see the neurologist about that issue.
We discussed ADHD medicines again. They suggested we wait on trying medicine for Ryan with his horrible history with brain medicines and my husbands very strong family history with Afib. My husband, his brother, his mother, his sister, and his grandfather all have had the same heart issues and my husband and his brother both have had cardiac ablations. Because of the family history of afib Ryan would have to be very closely monitored on ADHD meds. They did suggest play therapy for some of Ryan’s anxiety issues and OT for his fine motor issues over the summer which would mean weekly appointments at CHOP. They discussed trying to find a social skills group but if he does not have a autism diagnosis insurance will not pay for these groups even though we need them.
After the evaluation and blood test I looked at my boy with the velvety blue eyes, who was being eternally patient, and told him I would let him pick out a completely allergic lunch from a 7-11 as we rushed off to pick up Aaron at school. When given the choice of anything in the store my eclectic 8 year old picked falafel and almond M and M’s.
I am finding all of this completely overwhelming tonight. It feels like every question about Ryan is answered with five more questions, and it has been this way for years now. I know this is about getting him more help and real answers but for tonight I am going to let myself feel completely demoralized and mentally tired.