I have had more than one person ask me how I was doing in the wake of last week’s TouchChat deletion and “restore to backup” failure. Certainly, that was a stress burger with a side of “pain in the backside” fries, however it was not the only agenda busting problem that was occurring. Truth be told, the past few months has been a buffet of recently harvested challenges, some of which I would have gladly passed on if I could. My answer is the same as it usually is though… “good enough.”
Sometimes this answer causes people to rewind their thinking a bit. Certainly it is not the cheery “fine” that is customary where I live. However, I have for a few years now felt that answer to be a bit fraudulent if flung from my lips. You know what, in general, I am hanging in here pretty well. But I have been in a nonstop parade of harder hitting events for a while now, and my schedule at this time can be a taskmistress that demands everything and gives very little.
So what I say is a habit I picked up from my husband, because it rings much more true than “fine.” Difficult things have been happening, but I am good enough. Good enough to work hard at getting things done. Good enough at surviving when that’s the best I can do. Good enough at realizing that some of the experiences I’ve had created their own microcosms of undulating feelings in a complicated array that cannot be easily unwrapped for each person who asks how I’m doing. There are entire solar systems of joys and black holes of sorrow. All of that is going on, and none of that can be easily handed over in any given moment.
Changes have been remaking our lives for the past several years like a ravenous host of termites. One or two little tiny beasties covertly crept in, decided the framework was marvelous and it seems as if they sent out invitations for a raucous romp of a party. And now, the structure I anticipated my future inhabiting is outlined in dissipating wisps of remembered hopes, and I’m standing in sawdust and ashes, part way through a tour of this new structure my time is flowing into. This is a process that required a lot of adjustments to, and reflection on, expectations and the role they have played in shaping my happiness.
I love a lot, I grieve a lot, and I move on a lot. But most importantly, I’ve learned how to thrive on a heavily streamlined set of coping mechanisms. For this post, I would be honored if you would read a bit about only one of my sorrows for the past week.
Jennifer, we love you
In our state, it is common that early intervention services combined with ABA end at age 5. Because of the severity of his impairments, Tony was able to get extended services for that up until age 6. While the Division of Developmental Disabilities will soon be offering a new program that can combine ABA and habilitation for kiddos who age out of that program, Tony’s current team felt like his needs would best be met by a more comprehensive ABA program covered under his behavioral health benefits. So starting September 1st, he will continue habilitation through DDD and his ABA will be separated out.
In the upcoming weeks, I will be discussing more the new members who are joining team Tony to accommodate this process. I am thankful Stephanie will remain as the Clinical Supervisor after this transition, because I think having someone in this position who is already familiar with Tony’s circumstances (and shows such love for him) is a huge asset. However, this new program does not allow for an assistant Clinical Supervisor, so this past Wednesday was the last day for Jennifer to be working with our family.
Her kindness, her support, her encouragement, her expertise…all of these will be missed. Jennifer has been working with our family for three years now, and because of this when she looks at our son, she readily recognizes how far he has come. She remembers what it was like for their first several months of meetings in our home, where Tony screamed and hid the entire time while trying to bang his head into the pots and pans cupboard. These meetings were kept therefore as short as possible and were gradually increased in time once Tony could tolerate their presence.
And even that was so much better than where he was at for his first professional evaluation, done by a physical therapist, a year and a half before Jennifer met him. The screaming, the fleeing, the stomping, the falling, the self harming, the thrashing were so bad that this gentleman ended up holding our little man while jumping with him up and down on a trampoline until Tony fell asleep. He gently handed him back to me with a look of stunned awe, recommending a sensory evaluation with an OT as soon as possible.
I cannot give adequate expression to describe the depth and gift of soothing balm Jennifer’s words about Tony’s progress provided. So many people currently in Tony’s world haven’t seen all of the things she has seen, so when they look at him they just compare him to what they think a child should be at his age and notice the gaps. But my son is not made of gaps, he is still on a journey forward, and Jennifer, we love you for everything you’ve done and for seeing that in him also. Our family and our team will miss you, and we wish you every joy and success.
As I navigate all of these situations and feelings, I have some definite constraints that limit what I can do to nurture myself. Some of what I do is more constructive than other things…I can only admit that after walking Jennifer out on Wednesday, I burst into tears and ate a handful of chocolate. Usually however, I try to do things that will build me up and help me to feel better in the long run. I always make sure I take the time to workout, but I may structure my time for more walking and meditation because of the way these activities calm me. I am also more likely to take the time to wear makeup, because it feels like an extra luxury to nurture myself that way these days.
I always enjoy reading and learning new things, so I try to carve time out especially for reading and practicing things that will allow me to fine tune my self-care game. I picked up a copy of Mindful magazine on a Barnes & Noble therapy trip a couple months back, and I started reading a book cited in that edition- Full Catastrophe Living. I also find it gives me a lot of joy to support my kiddos in their interests when I’m feeling clobbered by stress. Hannah decided she wanted to make some Halloween crafts based on a Nightmare Before Christmas party book we bought an a different therapy outing, so this past week we blasted Def Leppard’s Vault and started painting Jack Skellington flower pots.
I also try to remember that a lot of how I feel about the events I am experiencing is a matter of what I am focusing on. For example, Monday’s therapy trip to Famous Footwear on the surface could have been considered a serious disaster of decorum and left me feeling discouraged. Tony was running every 1-2 seconds, and I left the store with a sheen of sweat on my brow by the time we made our purchases. But, if I think how amazing it was that he was so comfortable being there he wanted to play chase, it’s a different experience. My son- my son who has been terrified of such places- was relaxed enough that he thought the wide open spaces there would be great for a game. I think that is a more important win, and that is how I’m framing it in my mind. We’ll just continue to work on the decorum part 😉
I have to focus on finding joy in the small things, like Tony putting on and wearing a brand new pair of flip flops right out of the box, or watching him tap and stomp his foot to the beat while we listened to “Youngblood” on Thursday. When your kiddo has problems getting his body to do what he wants, believe me, something like that is a sunburst of awesome. I experience these seemingly smaller things, and I magnify them and soak them up for all they are worth. And when I think about things that way, my life is good enough- good enough for hope, good enough for joy, good enough to get me through hijacked schedules and sad things.
