Most days are packed. Up at 4:45, giving the kids their meds, getting ready to walk around 5:30 with Tony, neti pot, yoga, rower, shower, makeup, drive into school, participate in everything that might be required there, drive home, be present for anything his ABA RBT or BCBA needs, do some chores when they don’t need me, therapy (hab hours that I am responsible for or other therapy types), maybe help Tony with something that didn’t get done at school, pick Hannah up from somewhere…and somewhere at the end of that and everything else that needs to be done, it’s nearly 7pm and time to start getting Tony ready for bed and watch some anime with Hannah afterwards.
Sometimes road conditions extend the drive time…we had fog one day this past week! Yesterday our day went straight through to nearly 7:30… that’s us at school in PE (where he did a great job tolerating a high speaker volume and noise level). After ABA we did a haircut, and the last picture is right after parking for public therapy some time after 5:30.
Our son’s RBT commented this past week he hasn’t seen me work on a puzzle or play ukulele in several months. Kinda hard to fit anything like that in anywhere on the schedule the way things are right now.
But, truth is, I wouldn’t choose to do anything different. Being in the school environment, I can see how having my level of knowledge of Tony and how he responds to things is helping contribute to successful outcomes. And the growth I have seen in him just from getting to be around other kids and see how they do things has been enormous, it’s a gift that pays more than it takes. More joy, more hope for the types of opportunities he may be able to have in the community.
What I do in the habilitation therapy hours I am able to work also cannot be cut too much, because he’s gaining skills there that will benefit him everywhere else and there’s no place else in his schedule they can be practiced. Sweeping stuff into a pile using a broom? He can do that now. Making his own smoothie? That too (including pouring it into a cup)! Plugging in his own kindle? Yes! Getting his own zippers threaded and up without assistance? Much of the time.
Tony’s developmental pediatrician asked this past week (and I am going to paraphrase here) what I was doing to make sure I was taking care of myself and who is coming in to help me. Well, with a schedule like this? Options are limited, and they look like makeup, a couple minutes of meditation, watching telenovelas while I’m eating, reading a book while pedaling on my stationary bike, or listening to a book while I wash dishes…and the truth remains that options are limited for anybody coming in to help here even for all of the growth Tony has made. My friends all have jobs and families of their own. Most of our family doesn’t live near, and the ones that do also have their hands full. So for me to get more self-care time, I would have to cut something necessary for one of my children out of my schedule. And that’s not happening.
Sometimes things happen to prevent me from doing certain self-care items, and I confess it does make me feel edgy. Tony went to give me a hug during therapy last weekend and his finger nail clipped the side of my eye because he was looking off to the side and didn’t manage to get his arms positioned exactly on either side of my head to avoid contact. I tried to swerve, but I wasn’t quite fast enough and his finger still clipped me on the side, so I felt it was best to skip the makeup for a few days to avoid getting an infection.
Those things can’t be changed. Our son’s needs and challenges can’t be changed any other way than what is being done. I think it’s pretty important for me to clarify that while I stated in my post last week that I don’t have time for therapy for my current circumstances, going through therapy for other things has given me a lot of well-ingrained habits that allow me to self-rescue when I’m emotionally struggling. None of the techniques therapy can provide will make up for limited time for self-care, and none of them will erase ongoing high stress occurrences. Which is my way of saying I don’t think it would add anything beneficial to my tool bag that I don’t already have- but that if someone doesn’t have well-developed self-rescue skills and they are walking a similar journey, it may be beneficial to find some way to make time to at least read some pertinent self-help books and find ways to apply what can be done to their own circumstances.
Some day, our little man will be well-acclimated to the staff, the sensory input, the expectations at his new school and he won’t need me there the same way. When that happens, I may take a few months just to nap and soak in some self-care IOU’s…but until then, I can definitely keep running on even the fumes of happiness it has given me to see the growth Tony has experienced there. For me, even though I never would have chosen for my children the struggles that they have had, it has been worth it even when it’s been hard to do the things that I have done, and it is important to me that each of you recognize that side of my experiences exists also.
