It is 2pm and I am actually counting the hours until I can go to bed tonight. We are just getting back home after an extensive and lengthy evaluation process at CHOP. It was long!! The fact that I barely slept and Charlie was up a bit in the middle of the night made waking him early, rushing him to get dressed and out the door a very stressful morning since any break in our standard routine is cause for meltdowns but we made it on time (okay a bit late) and I think it was a successful process.
I tried to be prepared with snacks, drinks, a toy on hand for Charlie but of course didn’t take myself into consideration so I have to admit that mid-way through I was fading fast, longing for coffee or a bottle of water and snacking on Charlie’s goldfish to hold me over. Even though we go in to the appointment with the full knowledge that it is at least 4 hours, for some reason it seems painfully long when you are actually there. This is not a super insightful or inspiring post just warning you but rather a high level view of what these type of evaluations entail.
So here is what went down – the nurse came to bring us back and to weigh and measure Charlie at which point he cried out in agony and spent 5 minutes laying down on the hallway floor (its great to be at a developmental pediatrician’s when this happens as opposed to Whole Foods because there is no embarrassment or upset and I feel like they have seen it all). Needless to say we never did get his weight and height but since we are at the doctors so often, I knew the basics already and they were very cool about letting it go. We then hung out in a conference room for about 15 minutes and just played, looked out the window, etc. First appointment of the day was with the psychologist and it went fairly well in my opinion. The most important aspect of these evaluations is not whether Charlie behaves or does all of the things they are requesting of him but rather if his behavior is an accurate portrayal of the way he is at home and school on a daily basis. I felt that this first hour was a good representation of Charlie because he participated and played and had fun but also had a few mini-meltdowns and tantrums, hid in the corner or behind the desk, engaged with the psychologist at some points, ignored her requests at other times and basically acted in his most normal way. He was especially challenged during this session because there were quite a few transitions (moving from one game or toy to another was part of the process) and transitions are something that Charlie struggles with always. Once he gets into a specific toy or game, he really doesn’t like to move on to the next thing.
Next step was another 15 minute break for him and I in the conference room again where we enjoyed a snack, played some more, read a book and he really was a trooper because I know it was getting boring being in these little rooms with nothing much to do and he was also getting very agitated and sleepy since he had been woken up early. It sounds odd but I sort of enjoy these times when it’s just me and him in a room with no distractions like other people, toys or the TV. We just get to play and hang out and snuggle and get creative and it feels like some of the best quality time I get with him happens while waiting to see a doctor. They had a huge white board so we were drawing shapes and other pictures and I felt oddly bonded and connected with my little man during this break.
Next we made our way into a different room for our evaluation with the speech and occupational therapist. Overall, it seems like they got enough information, interaction and time with Charlie to evaluate him but it was not an easy hour and a half. Charlie kept losing it because he was beyond tired; half of this session was spent with the adults talking and asking/answering questions while Charlie took mini breaks/naps on the floor in a corner with his pia (pia is his blanket and we have no idea why we call it that but think he was calling it pillow at one time which sounded like pia so now we all walk around talking about pia as if it is a person). While this session was difficult with his many meltdowns, hiding behind trashcans and under tables, throwing toys or other items and trying to go to sleep, Charlie did play and participate and once again gave a good representation of his regular behavior. I answered a lot of questions from both speech and occupational perspectives and was relieved when our time ended (at which point Charlie said my coat and hat, lets go)! But alas, it was not done yet. We would still be meeting with the developmental pediatrician and this was the last meeting but we were left in the room for almost 25-30 minutes and that was relaxing but hard because there were no toys, nothing to do but just wait. Also – I can’t believe I forgot to mention this earlier but all of the rooms had those crazy mirrored walls like you see in interrogation rooms on CSI and it is so creepy! I felt so odd knowing that the whole time we were being watched and videotaped and listened to and it was distracting but after a while I just stopped caring. My feeling was I was not looking to impress anyone and really the more real we could all be, the better the evaluation results but it really was a weird feeling. It was especially hard for me when we were waiting and Charlie wanted to leave and took a massive tantrum including a few aggressive outbursts with me taking a hit to the face that felt like an adult had just leashed out on me…..I tried to handle it exactly the same way I would at home or normally but again felt self conscious about being watched during this interaction (note that almost every person we met with said we would need to engage a behavioral consultant moving forward).
The developmental pediatrician was great and another doctor came in during that session to play with Charlie and he loved her right away and had a great time playing, talking, and just seemed to relax and enjoy the natural unforced play and interactions. Most of this session was me answering a boatload of questions that are really no different than every other type of questionnaire or evaluation we have had in the past. It can be frustrating because we sent in a stack of forms, paperwork and reports from all of his previous appointments and evaluations but I do understand they need to talk with us to get a clear picture and understanding. During this session I was on the verge of passing out from lack of sleep, lack of food and of course lack of coffee and I kind of feel like I may have just blacked out while repeating every single thing we know and have learned about Charlie during the past 2 years. It was like a “beautiful mind” moment and made me relieved that we have done this so many times and completed so many forms that it was all just spewing out from memory. The doctors on the other hand might have thought I was a bit crazy but again, they have seen it all I have no doubt.
And that was that (for today). I guess reading this, it does not sound like very much but it was a long and tiring yet interesting morning. Once again I was astounded in some cases to realize that Charlie knows certain things that I had not realized and that he is being taught at school and after being at so many tests and appointments, I am feeling pretty happy about the fact that I simply don’t care as much when the tantrums and meltdowns occur and don’t feel the need to apologize at every turn because well that is just life for us right now. I had to guide the sessions at some points and I had to interpret his statements and words at others so I am glad I could be a part of the process not to prompt Charlie but rather to help others understand him better.
We don’t get any information from today until my husband and I go back next week for a 2 hour meeting with the team and I look forward to hearing their feedback and recommendations. I have a hunch that we are not going to learn anything very new and that is okay with me. Quite frankly, most of them seemed as perplexed by Charlie as our previous doctor was and as most of his teachers and therapists are……he veers close to an autism spectrum diagnosis but is not quite there in every way and many of his habits or actions are behavioral based and he may just need more guidance overall. So…..we shall see what next week brings but for now I am relieved that this part is over and that we are working with an excellent team at CHOP to continue advocating for and helping our little man.