This week we’re journeying a bit into Tony’s current therapy territory so that each of you can see some of what we spend so much time doing. There are going to be lots of photos with brief explanations about what we are doing in them to provide all of the support we possibly can for Tony to flourish and gain new skills.

Many of you already know this, but I personally act as the “therapy provider” for 30 of Tony’s habilitation/ABA hours as we remain unable to find someone else to fill them. I also provide support outside of sessions for all of the goals he has in his other forms of therapy, as well as doing Pivotal Response Training and Floortime exercises on my own time.  For Tony, he tends to want what he wants to the point where there is not any item he loves you can offer him that will overcome his desire to say “no” to requested tasks on many an occasion, so I need to be flexible in my approaches for how we work with him.

Many of Tony’s providers only get one hour a week with him, and as awesome as they are, this alone is not anywhere near to being enough to remediate his level of deficits.  To the extent that it is possible, this only happens as we help him practice over time, and for our little man who has huge struggles with acquiring many skills, I tend to look at most moments through the lens of how they can be used to build him up- so this is in no way a comprehensive list of what’s going on.  He still has considerable uphill battles in impulse control, risk assessment, compliance, and item desensitization that are not covered here. 

Also, please note that these are pictures in often fast moving situations (so some will be blurry in spots) and I did mark out visible faces for people walking by in the backgrounds. Otherwise, they reflect our real world conditions- my pasty looking lack of make up, fabulously loud leggings, and marionette dimples included. Therapy time for us is not a time for posing (Tony doesn’t believe in posing for the camera for any occasion actually) or catching idealized shots…so they are what they are. Clicking on the outings galleries will bring up pictures unblocked by the captions…

Community Safety: NMT & Habilitation/ABA Notes

Miss Emily and our family headed out to a localish mall for an NMT session. Our goals are to decrease fleeing and increase regulation (his ability to calm himself and stay focused), his willingness to wait, and tolerance for people and visual stimuli. We are using a metronome when walking to help him regulate and organize himself. We skip past items like the carousels to help modulate his fleeing impulse and still get him past them (he finds them overwhelming and scary…but this mama is going to keep trying, because next time we try Disneyland, I am hoping he’ll be willing to walk outside of the stroller no matter how busy it is…he refused to get out of the stroller once inside the park when we went this past November, and yet even that was such amazing progress from where we started it is still to be celebrated), and we provide gentle squeezes to his hips, shoulders, arms, and hands to calm him and help him wait.

Most of the time when I go out for Tony’s public and community tolerance and safety outings, it’s me solo. On this trip to Barnes & Noble I was super grateful for the power of the shirt (and the sweet woman who picked up his dropped maraca). It took several minutes to get him to the cafe area because he wanted to flee, and we’re working on getting ahead of him and providing a road block only when possible so he can focus on stopping his own body. Once I got him there, he was willing to sit and eat his snack. Maybe next time, we can look more at the puzzles and books 😉

We also had a community outing to WalMart with the incredible tag team that provides clinical oversight for Tony’s Hab/ABA programs. The maraca Tony’s holding is one of my brain children- I am using it as a substitute activity for screaming/stomping/banging his head on something when he’s upset. I had to duct tape the handles because he was chewing through the varnish (and he doesn’t like chewing on duct tape). Stephanie, Jennifer, and Whitney were along for this outing, and the purpose was for them to watch what I typically do from a distance, so their presence wouldn’t alter Tony’s reactions, and to provide recommendations for behavioral supports to help him in public. Stephanie and Jennifer (who supervise these programs) have been amazingly supportive and loving towards our little man, they definitely have a place in our family’s therapy “hall of fame”. Areas we are addressing here are waiting, stopping, staying put, and behaving appropriately for the setting and circumstances.

Speech

Recently Tony’s speech therapist for the past several months accepted a job with another company. We thought he did a great job and were super sad to see him go- hello Michael 🙂 But we’re also looking forward to getting to know his new ST better, though we expect his will be a more emotional period of adjustment for our little man until he gets more familiar with her.

Currently, Tony is working on labeling the feeling of “disappointment” appropriately and doing more conversing with others using his speech device. For this outing, we worked on community safety, appropriateness, and I required him to greet the clerk and order his own custard (which got me the stink-eye and an “I don’t like it,” but he did a great job in the end). We also work on vocalization, but Tony currently can’t make several sounds and struggles to combine more than one sound, so we work on this for highly motivating items and are rewarding whatever word approximation attempts he is capable of.

 

Occupational Therapy/Hab

Many of his goals in both of these areas overlap, as they deal with activities of daily living, like putting socks on with the correct orientation- this alone may take months of work. And he’s mostly there with the shoes, but sometimes struggles to get his heel in all the way by himself. We are also working on fine motor and functional play using a number of things right now, two of which I made following directions from these websites:

Button Snake: https://happyhooligans.ca/button-snake/

Coin Eating Ball: http://therapystreetforkids.com/r-hungryguy.html

So, naturally, you can buy things similar to these on the web, I know for example if you want the coin ball without the fuss of drawing or cutting, Pocket Full of Therapy does sell them. However, for both of these items (not just the coin ball), I think making your own is the way to go because you can change the size and type of buttons (I used one with more texture for an easier grip), the shapes and colors of the items on the snake, and the type, shape, and size of coins, slits, etc. on the ball as needed to help progress multiple skills.

For the coin ball, the wider the slot, the easier to open…I used a Penn 2 ball and had no problems other then the dull blade on our exacto, but as Hannah pointed out, that made the resulting toy look like it has teeth, so we’re going with it 😉 Right now, Tony struggles with the hand strength to get it all the way open even with a wide slit, but that’s OK, because it also works on finger strength for him as he’s pushing it in a partially closed slit. We switch hands to make sure we’re working on both sides equally.

I am working on some fine motor, letter recognition, imitation, following directions, and impulse control (because he wants to eat it) using this play-doh letter stamping kit I found on a public therapy outing to Ross.

This other item is a toy we’ve been working at for a while for both problem solving and wrist mobility. It is especially challenging for him because of the type of wrist and finger movement required. This is a HaPe product I originally purchased from the website “that shall not be named,”and it’s part of a really super cool puzzle piece peg shape sorter, but if you are like me and currently have a firm desire to support any business other than Amazon, HaPe does have their own storefront website. I used this option myself recently for a toy I’m hoping will motivate him with more intentional movements in tripod grasp (travel size train magnet wand maze toy). They make great developmental toys, and are one of my favorite companies for those.

Physical Therapy Goals

We work on gross motor skills in the home, park, sometimes on parking lot curbs, and with Tony’s fantastic physical therapist, Ms. E. She does a great job with him, I cannot praise her highly enough for the patience and ingenuity she shows in working him through tasks, and Tony has really started to look forward to his sessions with her. Tony doesn’t bond this well with just anybody, so it says pretty great things about her. We’re working on balance, core strength, climbing, alternating sides when climbing, and much more.

Some of these pictures celebrate a first that happened this past month…first time going all the way through a play gym tunnel at the park…WHOO-HOO! I cannot say for sure what the reason has been, but because he will go through cloth tunnels, and Tony has very sensitive hearing, my guess is that his reason may relate to the way sounds echo off of the plastic walls. 

Sitting and Functional Play

Right now, I’m trying to expand the time Tony is willing to sit and play functionally. The single most motivating task for that at this time is his sand box- top time right now is 20 minutes before he tries to eat the sand. Play is limited to scooping and piling sand for him right now, but we’re working on it, and I know our Tony is going to get there!