J Part II

Much has transpired over the past two months. To start with, I cancelled the appointment with the place close by our home that doesn't do spectrum testing. When I called the psychologist's office two months ago I was told the earliest that they could see us was November 25, and that we wouldn't have a diagnosis until December 16. I wrote the first part of this post on May 8. On May 9 Maddie had an appointment with a new geneticist in a different office because the previous one she had been seeing since we moved here no longer sees patients with PKU. At that appointment her new doctor offered a quick consultation with a child psychologist that visits her office periodically to work with metabollic patients that might have behavioral issues... I explained that Maddie did not really have any behavioral issues to speak of, but that sure, I could meet briefly with the psychologist.

Guys!!! I walked into that room and was face-to-face with the psychologist Jacob had an appointment with in November. I told her I knew who she was, I explained why I knew who she was. We briefly discussed Maddie and she quickly said she did not see anything that needed to be addressed regarding M, and then she asked me to talk to her about Jacob. I told her everything I could about what I had seen, his behaviors, what my dad and I had discussed... and she offered to give up some of her free slots, that she reserves for client calls and such, to get him in sooner. She promised to get back to me by the end of the day. Man! I was soaring, I got to the van and was crying while buckling M in and called to let Cory know we were on our way home... and then I got a text message before I'd even pulled out of our parking spot from the lady. She said she'd see us on June 3 for the initial meeting, June 10 for the testing and June 24 for the results. I felt like she had literally moved mountains off of me and I could breathe! I had not even realized that I had not been completely breathing!! My therapist calls this "an outpouring of God's favor."

So, we made it through and Cory and I have had time to sit with J's diagnoses. We started making phone calls, or sending text messages, to family and some very close friends. I spent the week of the 24th making more phone calls in just 5 days than I do in 5 months. Jacob's primary diagnosis is Autism Spectrum Disorder (ASD). This mostly means he is socially different from typical people. He won't look people in the eyes, even if they're speaking directly to him. He prefers to play alone, and he does not play the same way his sisters - or even his peers - do. He cannot read social cues well, and does not respond in socially acceptable ways most of the time. He displays repetitive behaviors, speaks inappropriate words, sometimes uses baby talk, repeats a word or a couple of words over and over and over, and we have noted that echolalia (repeating what others say verbatim) is something he frequently uses to try to cope with overwhelming situations or feelings.

We have been blessed to find some therapy places with small (1-2 month) wait lists for ABA Therapy (Applied Behavioral Analysis), which is a therapy that is incredibly useful for children with ASD. We have found one center that is about 45 minutes from our home that has started their evaluation process with him - and he did amazing (a story for another day!) his first time there. There is a ranch less than 10 minutes from our home that does equine and nature therapy for children with special needs, he had his first visit there this afternoon. I found a company that provides ABA in-home therapy (a huge blessing since we do not live in a large city), and got confirmation this evening that a Behavioral Analyst would contact me to get Jacob on the schedule. He and I will also begin PCIT (Parent-Child Interactive Therapy) starting on Friday, this will teach me how to effectively communicate with him and teach us how to interact better. It will also let me demonstrate to others the best way to interact with him.

Like I said, much has happened. My school has kind of been shoved on the back burner, but I am almost done with my undergrad degree and then I will be taking a break for a little while to focus on things here. Getting one - or more - new diagnosis can be scary and daunting, especially when the territory is unfamiliar as a parent. We are thankful for the support we have found so far with different medical teams and the new therapeutic alliances we are forming. We are grateful also to the outpouring of love and support we have received from the people we have shared with thus far.