One post can not even begin to contain adequate explanations for all of the challenges Tony has faced and continues to face on a daily basis. I have very little spare time, so it is a story I will continue to unfold slowly as I share with you bits and pieces of our journey each week.
As some of you know, he recently turned six years old. At 6, our son still can’t imitate most movements. He struggles to generalize the working of similar toys. For example, he loves shape sorters, and yet, when presented with a different style shape sorter he requires assistance to figure out the placement of the shapes. He experiences something similar with puzzles. Several months of consistent effort were required for him to successfully manage turning on a public drinking fountain by himself (the kind where you push in the sidebar to turn it on)- and I assure you he most certainly wanted to do this to get a drink of water. Tony has profound struggles with motor planning…that means he can’t get his muscles and his body in many cases to do what he is wanting or trying to do.
His risk assessment and impulse control are both at levels you would see in a child less then 12 months of age. He also has the ability to focus on things with another person comparable to that of a newly minted one year old, and as Miss B, his awesome new speech therapist, could tell you- Tony has serious struggles attending to structured tasks or being compliant with someone he is just getting to know. With Tony, when it comes to getting him to try things that are hard for him, the degree of his bond with you matters. No bond = no cooperation.
I could go on in this vein for some time, but I think probably the clearest, quickest snapshot I can give you would be to quote his most recent Vineland II adaptive behavior assessment:
“ANTHONY’s Adaptive Behavior Composite classifies his general adaptive functioning as low; he scores higher than only less than 1% of similarly aged individuals in the Vineland-II norm sample.”
This test measures an individual’s functional ability to do age appropriate self care and their social, communication, and behavioral skills. So, basically more then 99% of Tony’s chronological age peer group are higher functioning in these areas.
Sometimes people see things like Tony climbing a slide (which he started being able to do when he was age 5) and they don’t realize…his challenges are so much more than what they see. Sometimes, once people experience firsthand for themselves the depth of some of Tony’s impairments, that comes to overly dominate their picture of him. You see, his skills are also more than what most people see.
He can take you from somewhere inside a building he’s never been in before, navigate you through multiple floors and a crowded parking lot to our car when he doesn’t want to be somewhere. He notices instantly when something he wants but shouldn’t have is left in a place where he can grab it. He knows my favorite type of salad mix at Costco and has no problem finding it, even when they move it to a different location in their veggie room. He’s capable of planning simple diversions so he can try and either get away or get something he wants. These are things that give me hope, because I know that these heavily splintered abilities hint that Tony’s strengths will in time slowly continue to build to be more than what we see.
For some things he’s had success in, like being able to use the potty with assistance, we have been working tirelessly for years at them. People sometimes don’t recognize how important that “with assistance” part is and look at him being able to avoid accidents 95% of the time as some sign he doesn’t have serious struggles. Our little man would have no problem giving our bathroom a most unsanitary makeover without someone giving him constant verbal reminders about what he should be doing and in some cases physically blocking his attempts at grabbing things he shouldn’t. And sometimes when he’s in his bedroom alone at night, he still chooses not tell me on the computer he’s got to go potty (a monitor is still required in his room for safety reasons). And lets just say, I’d gladly welcome the help cleaning of any person who has doubts about what Tony’s current potty successes mean overall when that happens.
Many of the successes he does have are really more a testament to how hard we both work. “Give up” is a phrase that is in my vocabulary, but not in my operating manual, and I have sacrificed deeply to provide Tony with the extensive one on one support required for him to learn most things.
Being Tony’s mom has improved my compassion and understanding for others in many ways. Almost daily as I have walked this journey with him, I have encountered snap judgments from other people about either his weaknesses or his strengths being more than what they see. I have also experienced judgments of a similar nature about whether or not I do enough to help him progress, because sometimes when other people see a kiddo struggling, the first person they look at to blame is the parent.
Going through all of this, knowing what has been done to support Tony and the depth of his struggles has made it profoundly clear to me: just as oftentimes others really aren’t seeing the full picture when it comes to our circumstances, I certainly must not know as much as I thought I did about what is going on in other people’s lives either. Clearly, it is more than what I see.
When we make decisions as a society about who is or is not disabled enough to require access to assistance for services, the cost of which oftentimes exceeds the annual income for most families and is frequently not covered by private insurances, I would hope we could all remember that everything about these individuals lives and circumstances is so much more than what we see.
