On my blog, I try to focus on the positive as much as I can. I prefer to write about the good things or the solutions we have found. But the truth is I feel crappy lately. I am finding it hard to bounce back like usual. Let’s see, I wonder why I have been feeling this way. Maybe it has something to do with what has been going on the last few months…
- 9 evaluations for Kindergarten. It really, really sucked. Enough said.
- All the statements about “self-stim” and “very low” this or that on the evaluations. Yes, I knew it, but having it shoved in my face is not a picnic.
- We pushed hard for inclusion, thought we had some inclusion put in place at the start of school, only to have the district back pedal on it. I just signed the damn IEP anyway…fine, who knows, maybe a slow transition to typical K inclusion for parts of the day are best. We asked to meet 2 weeks after school starts to argue about it then, because it was clear the team just wanted to get on with their summer vacation. Anyway, Beth’s teacher has not been hired, and that probably matters more than the inclusion plan right now. Which brings me to the next stress point…
- Talking to the professionals at the school did not make me feel better. I tried to explain my kid’s autism and her unique learning/visual scanning/motor planning issues to everyone during the eval process and when I toured the school. I got confused looks most of the time. The exception was the speech therapist, but I just learned she will not be at the school next year. Add to that, I have not met Beth’s teacher yet because she has not been hired. I will get to meet her the week before school starts. All I can do is pray that Beth’s mystery teacher is a champion collaborator who wants to hear all I have learned while teaching Beth the last 2 years.
- Going to PT and OT therapy up to 3 times a week, only to have them discover what I have already discovered. It was clear in the evaluations everyone thought Beth needed more PT/OT, so we started up again with those therapies (30+ min drive each way, so 5-6 hours of time a week). While I have learned a few nifty approaches, those aha moments are dying out and she is not progressing any faster than when I worked with her on my own. But I am sticking with OT/PT longer this time, on the off-chance it makes a difference and because Beth loves the gym part of it. Also, I learned through the school eval process it is good to have outside professionals involved to back me up and document things. Sad, but true.
- Being an aid to my kid at camp and classes is great, but I hate to watch her struggle. Being an aid to my kid has been a phenomenal experience and I don’t regret it. But it is still hard to stuff the feelings down sometimes when your kid is so obviously delayed and very different from other kids. Stuffing those feelings is zapping my energy and while I think going to camp is probably one of the best things I have ever done for her, I can’t wait for it to be over. Only 8 more days over 3 weeks to go…yes I am counting down the days.
- The public is getting to me. Beth often stands out now when we go places. As I wrote before (http://wp.me/p2OomI-1gf), warmer weather means she can’t wear her coat now and so there is more flapping. Plus Beth is really, really big for her age, so she looks older than 6 and people try to converse with her more now. Add to that a myriad of sensory seeking and processing difficulties outdoors and in new indoor environments and she looks much less connected when we are out verses at home. The public just doesn’t know what to do with all that, and they tend to say the wrong things, look away, disengage, feel uncomfortable, over analyze, etc. Again, I don’t blame them, and I do what I can to explain and facilitate their interactions with Beth, but it can get me down sometimes.
I am sure I am missing something above, but you get the picture. Last night I decided it was time to do something about my foul mood. After camp is done (mid-July) we are getting the heck out-of-town. I canceled most summer activities and we will head to places with water to re-group and decompress. Beth and I both deserve some fun after that last few months we have had.