A few weeks ago, I posted on the types of support that have been helpful to me and that I think all moms could benefit from. To be honest, when I wrote that post I was a little bit down about the way things had been going with Caleb. Of all the silly things that made me upset, it was related to the internet and World Autism Day. I have several friends with ASD kids that also posted on Facebook or their blogs and I could see their friends and family posting things on their behalf or commenting on their posts. Suffice it to say, the lack of support from our family was very evident and I was feeling bitter.
Almost embarrassingly bitter, to be frank.
And equally full of frustration at how slowly things seemed to be going. I was starting to wonder if anyone in this state was ever going to help my little man with more than an assurance that once I put him in school everything would be fine.
Somehow after that day, however, things started happening. We finally got insurance figured out for speech and occupational therapy. He has had full evaluations for both in the last two weeks and I learned so much more about how to actually help him than I did from his original diagnosis process. Speech and OT have been revealing in terms of his specific struggles, beyond just acknowledging that he does struggle.
In speech, for example, his actual speaking ability (articulation) is about 2 years behind his age, but that isn't what the primary issue is. His understanding of language is fantastic (like off the charts fantastic) but his processing to express what he knows is really low. He skips around and gives partial information and is frustrated when other people don't understand him. Now we know what to work on! He had his first official session today and she was so excellent with him. More than that, she praised how helpful it would be for us to be homeschooling...how it will help him progress so much more quickly and gave me ideas on places to incorporate speech practice into our curriculum. She said to be sure to let her know what is and isn't working and she will help us keep him engaged at home.
He hasn't started OT yet (absurdly long waiting lists) but his evaluator didn't let me leave until she had also given me a modified home program to start and lots of literature. Caleb is a little odd in the ASD world because his SPD is sensory seeking instead of sensory avoiding. She gave me some great ideas to provide more sensory input without risking his health (like when he eats erasers and paper or picks his bumps and scrapes until they are infected or scarred). The OT is also at the same pediatric rehab center as speech which helps Caleb transition to all of it better.
In addition to that we have the paperwork and referrals for psychiatry (to discuss if we want to do any anxiety meds or not), individual therapy, and social skills. A friend also invited me to a parenting class for children with behavioral problems. I honestly don't think most of it has applied to us, but it has still been a good group for me to be a part of.
Finally, we hired a PCA. We don't have any insurance or financial support for this one, and probably won't but decided it was worth it to pay out of pocket for a few hours/week. She started today and while I think there will be a bit of a learning curve for everyone, I definitely see the potential. We worked together to make a list of activities they can do together and some communication & social skills Caleb will practice with her. Today she helped him with a little bit of schoolwork and then set up an obstacle course in the backyard and they "just" played for a bit. The best part was as the other kids finished their school work, she found a way to incorporate them as well. I was very clear that I don't expect her to have responsibility for the other kids, but it was nice to see that she didn't flinch at the chaos that can ensue here around lunchtime. We are starting with short stints this month due to our schedule and hers, but hope to increase that as the summer goes on. I don't know if we have a specific goal or time frame in mind, but I at least feel positive about the direction things seem to be moving.
And to think a month ago we had none of these things.
I guess this wasn't a little update. Much like the binder I started to keep track of paperwork and appointments and home programs, there just always seems to be more to add!