In my January 28th post, I wrote about how we had our evaluation with Charlie at CHOP and that my husband and I were scheduled for our follow-up meeting with the developmental pediatrician and other team members this past Wednesday. In all honesty, I was not really that stressed about the appointment because we have been through so many evaluations either with the early intervention team, the school child study team or with our previous developmental pediatrician. In a way I felt we knew what to expect and were prepared for whatever the CHOP team may tell us. I was not nervous about the meeting and was fairly calm walking into the appointment. A good friend who has been through this experience with her own son and who had met with a team at the same facility called me the day before and was extremely helpful in providing both support and advice regarding our follow-up session. The last thing she told me was to “expect the worst.” This was meant not to scare or upset me but rather to help me. Prepare for the worst so that you are not caught off guard or upset by whatever the doctor may say. This was great advice but I was not convinced this applied to me simply because this team had seen everything that other evaluators had and I felt strongly that they would tell my husband and me that they were unsure about Charlie; he would continue to perplex them as he had so many before and that we would need to continue living in this ” we don’t really know” existence for a while longer while they figured him out.
It turns out that I was wrong. So much for mother’s intuition or perhaps we can call it optimism in this case. The doctor came into our meeting, explained she had multiple reports to review with us and out of the gate advised my husband and me that based on their full evaluation and the three different tests that were conducted on Charlie, they are providing a diagnosis of Autism. I felt my pulse quicken and my heart pounding and immediately looked over to my husband to gauge his reaction (he is far less emotional than I am and more difficult to read but I could tell he was shaken as well). The next hour and half consisted of a review of the various reports provided by the doctor, psychologist, speech therapist and occupational therapist. Both the speech and occupational therapist came into the meeting to review their reports and recommendations which was helpful and appreciated. During this meeting, I was definitely listening and paying attention and taking it all in but I was also distracted and my mind was reeling. Autism – it was official….finally.
Part of me was relieved, I have to admit. I had been thinking this for such a long time that it felt oddly reassuring to know that I was not insane, not imagining things and that my instincts had been correct. On the flip side, I wanted to shout “you are all wrong, you don’t really know him like we do, you just don’t get Charlie!” The entire meeting was surreal because while we knew this was a reasonable result and one we had prepared ourselves for during the last year, we had also come to depend on the confusion and uncertainty that so many professionals had expressed during their time with Charlie. As my husband said to me during a break when we were waiting for the social worker to come meet with us, “the gray area was hard but it was also comforting…it gave us hope.”
The social worker came in last and gave us a LOT of paperwork and forms and information. I left carrying a massive binder that I am actually excited about having because it is a great way to keep all of our forms, files and information in one place for easy access (yes I am this much of a dork). Meeting with the social worker might have been the weirdest part of the entire experience – knowing that we needed to meet with a social worker, to know about our options and our support resources was scary and a bit depressing and while it should have been a comfort it felt like a harsh acknowledgement of how hard this road just might be.
We walked out of the building to the parking lot and I was in a bit of a daze. We knew this was probably going to be the result, we have known for quite some time in fact. That did not make it any easier. Nothing had changed yet everything had changed. Charlie would be the same boy when I got home as he was when I dropped him at school earlier in the morning. The recommendations from the CHOP team really make no major impact on our lives – special needs preschool with the option of inclusion (check), speech therapy (check), occupational therapy (check), behavioral consultant/therapy (I had spent the last week doing research on options in our area). The reality is that this official diagnosis would actually make it easier in some ways for us to receive certain services for Charlie and would also make it easier or simpler to explain to schools, therapists, family and friends what our situation is minus all of the caveats. Knowing all of these things certainly helps, in a major way. But that doesn’t change the fact that my husband and I were upset, shaken, scared, worried and quite frankly exhausted.
I cannot say this diagnosis is shocking, it is not. I cannot say with 100% confidence that this diagnosis is accurate or that it will be a forever diagnosis for Charlie, it may not be. There are many people who work with Charlie daily who are convinced he is not autistic because he demonstrates so much that contradicts what may be expected of an autistic child. Then again, it is important to remember that autism exists on a spectrum for a reason and no two cases are identical. I cannot say that this diagnosis will make it better or worse for our family, I am not sure it really changes things that much. We are already doing all of the things the team recommended and it doesn’t mean a massive change in our lifestyle or existence. What I can say is that hearing the words out loud – seeing them written down in an official physicians report, being handed guides and legal resources on autism, finally knowing it is real……..well I guess that is something that no one can actually prepare any of us for.
Is it the end of the world? Absolutely not! Does it change who our Charlie is, nope not at all. Does it make us love him less or more…..not a chance. Does it scare us and make us wonder if we are really up to the challenge…..you bet it does. But hey, we have been doing the best we can as parents so far and I have no doubt that we will continue to push through to ensure we do whatever we can to help Charlie be his very best. Part of me is sad, part of me is scared and part of me is worried – but I am almost positive that those words describe every single mom and dad out there in the world and a simple diagnosis is not going to change any of that. This is not a life threatening condition and Charlie remains a burst of energy, silliness, fun and frustration day in and day out; but he is healthy and happy and as a mom that is all I really want for him in the end.
So here is to moving forward, doing our very best and making sure that Charlie knows without a doubt that he is loved, he is cherished, he is special, he is smart, he is talented, he is funny and he is going to be a rockstar in life no definition needed.