Far too often it feels like my planned schedule has been ripped apart and hijacked by unexpected whirlwinds, and I end up bleeding time as I sprint against forces beyond my control, chasing the left over bits and pieces as they flutter aimlessly towards the ground through the swaying air. This week’s gale ripped through my home so quickly at first I didn’t notice.

Tony has recently become obsessed with holding down the icons on his ipad mini because he likes watching them shake. We’ve managed to keep him from deleting anything important…until Tuesday, when in a matter of seconds he wiped his entire TouchChat HD program from the device. Just as a brief reminder, this is the program Tony uses to communicate all of his needs, and right now because we are still working on early literacy skills, he does this by selecting a drawing paired with a written word that matches what he wants.

This was a disaster. Tony is very specific about what he wants, and while he has no desire to describe things or communicate socially, it very much matters to our little man that he gets what he actually wants when he wants it. He had pages upon pages of customization specific to his interests and likes painstakingly done by me. Tuesday was a day where he frequently erupted as I frenetically moved between recreating pages for him, helping with therapies, calming him down, and trying to find enough of my remaining schedule pieces to suture and resuscitate.

Once upon a time, a speech therapist told me that if I did routine backups to the i cloud it would protect all of my TouchChat files. I got scorched once when Tony’s primary TouchChat file, that I did not religiously backup, somehow became corrupted, and I had to spend hours rebuilding from older files in the app. I was a charcoal briquette this past week when I discovered that oh no, restoring the device to a recent back up would not restore the customized files within the app, but rather reset TouchChat to a brand spanking new Un-Tony customized in any way version of the app.

Probably several of you are more tech savvy than I am and could have prevented this from happening. Experience has since painfully schooled me on a few things, and Andy found instructions for me on how to set the device so that apps cannot be deleted by holding them down. Because, oh yeah, he still likes to hold the apps down to watch them wobble around, and I have learned that an icloud back up is a mysterious process that doesn’t actually involve a backed up copy of your work. And good golly, I am still swirling around in a dizzy mess trying to rebuild all of his customized pages and catch as many pieces of my shredded schedule as possible.

So this week, I present the bits and pieces of the less developed thoughts that are nonetheless important still for me to share. My time usually cannot be prioritized by my interests or personal pursuits, and for right now, TouchChat is an important and necessary part of how Tony interacts with his world. Putting that back together has to be a top priority.

Picture This: When Pictures Don’t Show Love The Same Way

For a little over a year, Tony was enrolled in a public developmental preschool program. His teacher, who I thought was a very caring and dedicated professional, was surprised when I indicated we would not be purchasing his fall school pictures. I explained to her Tony’s fear of people, his sensory issues, and that if placed in a gym full of other kids and a photographer he didn’t know at best they would get him screaming. I felt sure he would not want to be reminded of an experience that traumatized him and told her so. I steadfastly refused to purchase a packet, but I do have a copy of the picture because it was put on his school ID.

I think perhaps in our society we have come to expect that if you love your child, you do certain things to show them. That is fine…if those things really leave that individual feeling loved. Tony gets visibly distressed when I verbally recount experiences that were upsetting or unpleasant for him- he likes to be reminded of happy memories, and so do I. Truth be told, Tony gets lots of pictures taken of him, because he, like Hannah, is fiercely loved. My favorites are the ones where he is truly joyful. When I look at this picture I took of him recently as he was enjoying his frozen treat at Culver’s, I see that glow of delight, and it’s a happy memory that we both will want to treasure.

If you know or encounter someone on the Autism Spectrum or with a Sensory Processing Disorder, they may have similar challenges, and I would invite you to remember that for these individuals sometimes a picture declined is the most loving and supportive thing to do.

Tabling the Table

When it comes to therapy strategies, sometimes there is more than one way to approach a problem, and sometimes there is more than one problem to approach. I have mentioned in a couple of my more recent posts that Tony went through a phase of picking up heavier things and throwing them to calm himself down. I have discussed briefly our acceptable substitution behavior, which was to have him throw weighted balls at the ground instead. However, if you know anyone who has a kiddo throwing chairs, you could also recommend to them that they table their table so to speak.

For us, we actually were having more than one dining table related problem. Around the same time as his sensory differences were manifesting themselves with such intensity, our little man also figured out how to climb up on the table. However, he couldn’t get himself down safely and it was many months of hard work before he could, and I was scared to death he would fall off and get seriously hurt if I wasn’t right there to catch him. And because his deep pressure nerves are quite under responsive (unlike his super sensitive skin nerves), I knew damage he did to his body beneath the skin would be minimally felt and unlikely to discourage him from trying again.

So, as I often did during that period of time, I took an idea of what I thought would help me with both problems and searched the pages of the website I used to shop at. Specifically what I was looking for was a table that would fold up with the chairs inside of it that could tuck behind our couch when not in use, and yet not look completely like a card table when we needed it. I felt like it would be super desirable to also have as many chairs tucked away as possible while we were helping Tony habituate use of the medicine balls. I am sure something similar could be found any number of places.

Obviously, while it looked better than a card table, Tony was able to chew off corners, and two of the chairs had slats snap under the weight of the people sitting on them. But it was a huge aid in providing safety while that was needed and in decreasing opportunities to throw chairs. It has been a few years now since Tony tried to fling a chair and we no longer need this kind of table. But I was super thankful that there were such options on the market, and I think that could be a bit of help you could pass on to anyone else who might be in need of it.

Ending on a Grateful Note

About a week and a half ago our family met with Miss J, Tony’s new DDD support services coordinator (SSC), to discuss the number of habilitation hours they would be funding for our son going forward. While each of his therapies has an important role in his life, what happens in habilitation is particularly critical. I would like to give a special note of thanks to Stephanie, Jennifer, and Emily for taking time out of their busy schedules to attend this meeting and discuss his needs. I am also profoundly grateful that his new SSC was willing to approach her supervisor with a request for more hours than the original offer. There can be no doubt our son’s needs remain extensive, but he continues to work hard and move forward bit by bit. He needs every one of those hours and it means everything to me that she did her best to support that. And, as relates to this post, I would like to leave with abundant appreciation for a teacher who took the time to take three pictures of my son once upon a fall ago, when he was in a calmer place. They are still proudly on display and silently watched as I chased down bits and pieces of my week.