Since even before C's diagnosis, we have been a part of the First Steps program. It is our state's Early Childhood Intervention program, and provided us with PT and OT at home. I don't think I can explain in words how grateful I am for this program. To have trained professionals come to my home on a weekly basis to check on him, work with us, and assess his and our needs has been one of our greatest blessings. I feel like I am pretty observant and educated, and know my child very well, but they consistently noticed things that I did not. It has been so nice to be able to discuss all these life changes we have to make in the comfort of our own home, and I really truly feel like we have made some great friends.
But then C turned three. And at three, the government steps in and pretty much dumps you out on your own. We could put C in the special needs preschool at the local elementary school, but I'm not too thrilled with them, so we're keeping him at home one more year. If we did send him there, we would have had "transition" meetings and "arc" meetings and all sorts of meeting with the school system, but since we decided to wait a year on preschool we are just on our own.
I can say without shame there have been several times I have cried about this transition. First Steps was there to pretty much anticipate our needs and help us find whatever services and equipment were out there. And now we have to go it alone. I have spent the last month or two scrambling to find recommended therapists, who had space for C, and take our insurance. We also have to give back a lot of the equipment we've borrowed, so we're trying to get that replaced as well through insurance. I mean, some days I really can't see how my life was ever busy before I had all this to do.
And today we had our first visit with the new OT...and I am thrilled!!! It's about a 35 minute drive, but they have great equipment (including a disco ball--not sure why they need that, but it's awesome) and C actually gets to see a man now. I think it is going to be really good for him. The guy does all the same stuff as the other OTs, but from a man's perspective. Hard to explain, but very cool.
***And just as a side note, while we were at the new OT's office this guy came in who is a wheelchair rep we had originally contacted to try to get C the Permobil power chair we wanted. He told us that our insurance just wouldn't pay for that, and we had to get this other chair instead--that's all he showed us, one chair!! (That's like shopping for an SUV, and somebody showing you a Ford Escape and saying, "Yup, that's all there is.") So I see him walk in, and I look away but out of the corner of my eye I see him recognize me, and then look at C's wheelchair and just stare. I'm sure he noticed the big sticker with his competitor's name and number on the back of the chair as well. And I wanted to say, "Yeah, see that? That's cause I don't settle when it comes to my son!"...but instead I just sat there and for one brief moment felt like the best mom ever.***