Words

Last week I had a meeting with Fox's Early Intervention coordinator to discuss adding the speech services that CHOP recommended. Their report suggested 3 or 4 hours of speech services a week, but Early Intervention would only agree to 2... and that was only after I really pressed them for it. At this point I feel as though speech is the top area he needs help with, as he still doesn't babble at all, so it's a little frustrating to only be getting 2 hours a week. I'm alright with it for now, but if after a while I feel it isn't enough I will definitely do everything I can to get him more. Lately people have asked me what the hardest part about Fox's diagnosis has been and what I'm the most worried about. The answer is easy... I'm worried that he may never talk. That he'll never be able to say "I'm Fox". That he'll never call me "Mommy". That I'll never hear him say "I love you". It's overwhelming to even start to think about, so I try not to. I'm doing the very best I can to not look too far into the future... I know I have to just cherish every day and enjoy every moment... but some days it's easier said than done.

xo Betsy

Diagnosis

Today was a big day. A day I will never forget. The day I learned that Fox has autism. I went for his follow-up appointment today and heard the words that I didn't want to hear. I thought I had prepared myself, but as I sat there listening to them tell me about the results of his evaluation, all I could think was "I can't believe it's really true". I tried so hard to listen to everything they were saying, but as soon as they got past the diagnosis I had a hard time concentrating. I kept asking questions and they assured me they were going to give me papers with everything written down to go over later - thank goodness. They went over the different kinds of disorders on the autism spectrum...  PDD-NOS & Aspergers (which are on the mild side of the spectrum)...  Classic Autism, Rett's Disorder & Childhood Disintegrative Disorder (which are on the more severe end of the spectrum). They officially diagnosed him with mild to moderate classic autism. My mind is spinning with everything that happens from here... blood tests, more evaluations, increased services, etc. They want to add speech therapy 3-4 times a week and ABA once or twice a week, which would put us up to 9-10 hours a week of services. It's going to be difficult to have so many therapies every week for him... someone at the house every morning and every afternoon gets a bit exhausting at times... but I'm just so thankful that all of this help is available to him. And as upset as I am to have heard the news today, I am relieved to finally have a diagnosis and not have to wonder any more. It's going to be a challenging road ahead, no question, but I have some wonderful people in my life and I know that is what is going to carry me (& Fox) through.

xo Betsy

CHOP, Visit One

Last week I took Fox to CHOP for his big evaluation with the developmental pediatrician. We got there around 8am and walked into a room with five people all sitting waiting for us... a little intense. The team evaluated him for over two hours... watching him play and interact, trying to get him to do little things, etc. At times some of them went behind a two-way mirror to observe and give him a little break from so many people, which was helpful. Overall I feel like he did a really great job... he was in a good mood, which I was very thankful for, and didn't seem to mind being in a new place. The team said that they don't want to see kids on their best days or their worst days... they just want to see how they usually are, and I think we accomplished that. At the end of the evaluation I was told that I had to come back in a week for the findings and recommendations... that they had to have time to write their report, etc. The thought of waiting another week for some news was about more than I could take and I asked them to please at least give me some indication of what their initial thoughts were. The developmental pediatrician told me that obviously he has a huge speech delay... no babbling, no words, etc... but even if we were to take that delay away, there are still other concerns. I knew this... I've known this for 6 months... but somehow hearing an expert at CHOP say it made it very real. This has definitely been a long week... knowing a little information but not everything... just waiting to go back.  So, Thursday afternoon is the big meeting and likely a diagnosis... finally. While I'm so nervous about what I may hear, and probably won't sleep at all the next two nights, I also know that with it will hopefully come lots of information, resources and help.

xo Betsy