I am going to begin this week with a note that mostly applies to those of you who have signed up to receive my posts via e-mail. Thank you for taking time to read with us each week, by the way 🙂 As I’m sure some of you have noticed, the plugin that converts my content into e-mails (Jetpack) has not been doing pretty things to the formatting with posts that are heavy on pictures lately. My eyeballs strained and imploded as I tried to scan through a couple of them myself.

As a mom and a writer, I did not start this blog to profit in any way off of Tony’s circumstances, but rather to help spread some awareness and to be a resource for others who may need it. I am most certainly not abounding in great tech skills. And, as you may have picked up from my posts, I’m crazy busy and stretched out like an Elastigirl wannabe. Any illusion of personal time I have usually evaporates like a misty tease…so troubleshooting plugins will come up on my to-do list as soon as I can sanely work it in.

Until then, this post is going to be heavier on pictures…if the e-mail comes out wonky once the pictures start flowing, you have my sincerest apologies and if I may recommend going directly to the blog on your phone or computer to protect your own precious eyeballs. Thank you so very much for your patience with me on this one…cue the subject change 🙂

I am a firm believer that numbers don’t represent a person. So often we use numbers to create a comparison snapshot, and when an individual is receiving special education or therapy services, a multitude of assessments are deployed to harvest numbers for demonstrated competencies. Those scores can be heavily impacted by factors unrelated to actual capabilities (like performance anxiety), or for an individual with Autism, sensory concerns or fear of working with an unknown person. Every year as part of the early intervention process, Tony was given the Vineland II assessment. His most recent numbers tell us what can readily be observed when spending time with our little man: gross motor skills are one of his highest functioning areas.

When the data is rendered for the Vineland II, an age equivalent is given to aid in comparisons. For our son, his gross motor skills are comparable to your average, typically developing child aged 2 years and 9 months. For last year’s assessment his skill level comparison was at 2 years, 4 months. Tony works very hard, and he does move forward, but even in his highest functioning areas the progress is slow and his difficulties with motor planning definitely impact the rate of it. Progress is progress though, and today we’re going to celebrate that and the therapist who works with us each week to help him move forward with these skills.

Right before our physical therapy sessions, I typically take our sweet son to a park so that he can unwind some of his energy. I will often vary which ones we go to, however if he needs some extra soothing I will go to one that has a bucket swing large enough to support him. He loves to swing and it helps him to calm down and regulate his emotions. Like many individuals with Sotos Syndrome though, Tony has weaker core muscles and it is harder for him and a lot less relaxing when we work on using a traditional swing for a kiddo his age.

I also confess to picking a park with the bucket swing the last couple of weeks so that it would be extra motivating for him to keep his shoes on…since taking his shoes off outside has become a safety concern, I wouldn’t push the swing if they were off his feet. He was more than happy to keep them on once he realized that. I know it may seem unfair, but sometimes, we do have to use those kinds of strategies with Tony because he doesn’t have the same concept of compliance with someone because he either loves them or they are a grown up. He absolutely loves me, I have no doubt. In his mind though, it’s just a very separate matter from whether or not he should do something. So sometimes you have to make the relationship between getting what he wants and working with others very clear to him.

After we’re done at the park, we head over to the clinic Ms. E works at, which is also the one Jennifer and I visited to troubleshoot some waiting concerns a few months back. Tony was struggling with running in the lobby, smacking his fingers into the windows, and not wanting to sit for even highly preferred reinforcers. Both Ms. E and Miss B (his sweet ST works out of the same clinic) were both incredibly supportive with what we wanted to do to help improve in these areas, which initially involved having us wait for them outside the clinic for a couple of months to break his habit of engaging in those behaviors.

We’ve now progressed up to having him wait for brief periods of time in the lobby while sitting and playing a highly preferred early learning app. For the most part, this has been going extremely well, so currently Ms. E meets us in the lobby. Once Tony’s given his greetings and asked for permission to enter into the therapy room, they work together on a variety of tasks targeting our little man’s gross motor deficits.

Upper Body & Core

Tony is very strong for his age, but he struggles to support himself while hanging (a process which also involves a lot of core strength). He sometimes needs hand over hand support when learning new arm exercises because of his challenges with motor planning and imitation. Ms. E does a great job of providing alternative activities involving weighted blocks or sandbags to help Tony develop more coordinated upper body strength. Sometimes they also do work using a scooter board to target both areas, and when it comes to working on climbing rope ladders, I think his problems lay mostly in core strength and upper body coordination. He still needs assistance to go up multiple rungs of a moving ladder.

Obstacle Course

Ms. E usually puts together some form of obstacle course each week to practice working on a number of skills with our little man. I love that she gives him opportunities to participate in building the course. Balancing is harder for him- this is another skill that needs core muscle cooperation- so there are usually multiple elements built into the course to help him improve in these areas. Sometimes Tony needs a physical demonstration of what he’s supposed to be doing, especially when he gets anxious…in the picture with the trampoline, a hand dryer went off in one of the bathrooms and he just froze up because the sound bothers him and he’s quite scared of them.

Wagon & Therapy Dog Time

As a reward for cooperating on other tasks, Ms. E pulls Tony around in a wagon. I love how she works on getting him to make verbal approximations for when he wants more, and that she brings out the therapy dog sometimes. Tony loves looking at dogs, but he seems to find the unpredictability of their movements worrisome if they are near him, and he also does not like the texture of their tongues if he gets licked. Since we would love to get him a service dog when he’s older, I think it’s super cool she’s doing this, as I can see our son is gradually get more relaxed with dogs.

Sensory Breaks & Problem Areas

On days where Tony is feeling more emotional or overwhelmed, he need more sensory breaks doing things like swinging. He also shuts off the lights sometimes because they bother his eyes, and this can be a problem if there are other clients in the therapy room. While Ms. E does do some tunnel work with Tony, sometimes he commandeers the activity another kiddo is working on with her therapist before she can get to it. He also sometimes crashes himself down on the larger cushions and refuses to move when he isn’t feeling in the mood to do something. Running into side rooms and slamming the door is also one of his task avoidance strategies, and I am so grateful for how patiently Ms. E works with him through all of this.

A Final Note of Joy and Triumph

As many of you know, our Tony likes to run off where he’s not supposed to, generally without any thought for his safety. In therapeutic lingo, this behavior is referred to as “eloping.” In a typical session, Tony tries to elope at least once, sometimes up to seven or eight times. And as previously discussed, he has to be physically blocked or deterred because he does not functionally respond to requests to “stop.” But two weeks ago, my son responded appropriately and stopped in his tracks…not just once, but twice.

If you will remember his gross motor age correlate…compare this to his community living and safety skills, which are comparable to a child less than one month of age. The topic of what it means to parent a child with far more gross motor skills than risk assessment is definitely a topic for another post, but for right now let’s just say this small step of starting to respond to “stop” sometimes is HUGE. Maybe next year, we’ll see that community safety number move up a little also 🙂 In the meantime, we remain deeply grateful to the patience and dedication shown by Ms. E as she works with him each week to help him strengthen and grow in as many ways as possible.