From where we left off on last week’s post, you can see that Tony has what are called “highly splintered skills.” This means that he’s doing much better in some areas than others. Currently, the gross motor skills we talked about last week are not the highest functioning domain for our little man. Tony’s highest scored skill is actually personal communication. That may seem contradictory for those who assume communication and the spoken word are synonymous, but in reality they are not.

There are a variety of ways a non-verbal person can communicate, and as we have previously mentioned, Tony currently uses an app based on one of them- the Picture Exchange Communication System (PECS). What this means is that he uses line drawings with some pictures to make his sentences and requests. This provides us a small window into what he understands. I say that it is small because at this time Tony really is only willing to happily communicate about things he wants or feels very strongly about. When he wants something, he’s usually quite accurate…so I suspect he understands more than he’s willing to communicate about. However, your typical child his age has a panoply of social and interactive communication patterns that go beyond their personal desires, so he’s still scoring a good bit lower than his peers on overall communication at this time.

What Tony’s success with PECS tells us is that he can certainly be educated. And yet, that is no simple matter. In Hannah’s post this month, she rendered a sibling’s perspective on some of the ways educating individuals with certain disabilities can go awry in the school environment. As a parent, I recognize this is a complicated situation, with the rights and interests of many parties requiring representation. I know the teacher and two assistants in his class were incredibly caring individuals who definitely wanted to do right by the kiddos in their class. I can also honestly say they were not provided all the resources they needed to support both optimal safety and learning for all the children they served.

The topic of challenges faced in finding appropriate schooling placements for children with more significant challenges is a subject for another day. Managing our son safely in the school environment right now would require a one-to-one aid who is strong enough to work safely with him when he’s scared, tries to self-harm, or wants to elope. I would caution any reader to recognize that it takes much more strength than most people realize to keep everybody safe when he’s that worked up, and as a parent I try to make schooling and therapy decisions that not only honor Tony but those who could be working with him.

I can see a time within the next year where he will most certainly be able to step into a more typical special education environment with a less muscly aid. However, to actually help him progress academically, he still would require an aid nonetheless. But for now, the task of educating Tony is mine. This comes with both the freedom to cater in every way to our son’s learning preferences and the scrutiny of others, who are concerned he may be better served elsewhere. I just let that latter one roll off of me for right now, because people who feel that way haven’t actually worked much (if at all) with my son. If they had, they’d get it.

So, if you’ve been reading with us for a while now you know that when it comes to our little man, sitting is really a “no good, no can do without a rocking chair” kind of word. He still has minimal joint attention. He will not sit for most stories being read. Worksheets, arts, and crafts are not going to happen effectively. You can try to hand over hand him for brief bits of a craft, but he’s heavily resistant and currently he won’t often do those types of tasks even for rewards. He will scribble, but he’s not really going to look for very long at what he’s scribbling on. Videos he will watch, but he won’t just readily accept any new video. Super Why and Word World are the main educational videos he’s happy to watch. Most of these things that he rejects working with for more than a few minutes look a lot like the standard fare for schools everywhere… so it is certainly reasonable to wonder at this point how he can be taught any academic concepts.

Of course, we do have therapy programs we are running to try and improve his tolerance for all of those tasks. In the meantime however, I turn everything I can into a game. We produce sounds for chase and tickles. I got a “Where’s Howie’s Owie” game this past week that I’m super excited about (because he’s already working some with it) to help with body part labeling. We’ve already discussed in previous posts that Tony is willing to use some alphabet related toys. Well, I’ve actually got a pile of early literacy toys at this point, having driven a goodly distance across town to a Lakeshore Learning store during one of their sales a couple of months ago. We’re working on 3 and 4 piece word jigsaw puzzles, letter blocks that are similar to duplo blocks, and alphabet locks. For all of these, he’s only willing to do them for brief periods of time, so I sprinkle them in with other things.

Within the past couple of months he’s become willing to use learning apps, and this is huge. Once I was able to ascertain with apps on my phone that he was finally tolerating and enjoying this learning avenue, I purchased a new ipad mini from Jet.com so that I could beef up this portion of my strategy. Tony is not willing to do other apps on the ipad that his TouchChat HD is on. As far as he is concerned, that ipad is for communicating only and he gets upset and refuses if you try to encourage him to do anything else on it.

He’s doing great with the new ipad, though he has thrown it a couple of times when asked to try a new app. That’s why a strong case is a must for anything Tony uses. For his most preferred apps, he will sit for 10-20 minutes working on them. Because he is more resistant to new things, each app has to be introduced in slow snippets, with one question or task being done per reinforcer and break. As he gets used to each app, I slowly increase the time I’m expecting him to play before he gets a reward or break.

When it comes to these apps, you can definitely see areas where he struggles to understand certain concepts. The reality is Tony does have learning disabilities. He does the best with “Monkey Preschool Lunchbox” and “Word Wagon” by Duck, Duck Moose. Digital jigsaw puzzles and matching of pictures and letters are strengths for him. In fact, he does so well with those two apps that they can now be used as reinforcers for less preferred activities. He’s also starting to pick up pretty well on a Montessori counting app. Between his ipad and my phone we have over 20 apps he’s in various stages of tolerance and success with. The apps he performs best on present standard preschool concepts in the US, but that’s really where he’s at in terms of his ability to understand and demonstrate academic concepts at this time. He wasn’t able to do many of these skills when he was preschool age.

I purchased a slew of apps because he is responding better to this strategy than any other right now. What I focus on using most are games that have an emphasis on literacy skills. PECS has limitations, and I think Tony would be greatly benefited by being able to type out and articulate his own words to describe his needs and wants. One of the things that is cool about “Word Wagon” is that the letters are shaped like keys on a keyboard. I feel it is possible Tony will never have the motor planning to master traditional typing, but he will certainly be able to hunt and peck, so I see a lot of value in a game that has letters with a keyboard appearance. And, as he learns to read, he’ll be able to select individual words on a speech program, which would also expand his ability to communicate.

Learning happens best when it feels enjoyable. So for him I try to make learning a game he can understand and participate in. Sometimes the game has to be shorter for now, but we’ll gradually continue to build on it until it becomes more, just like everything else.

Correction Note 9/23/2018: Psst…don’t tell anybody, but  I messed up the name of one of the apps Tony’s using in the original post.  OK, you can tell anyone you want to 😉 But if you actually were interested in these apps for your own kiddo, the Duck, Duck Moose App is actually “Word Wagon,” and I corrected that today when I realized it while Tony and I were playing on his tablet today. I have no good excuse except chronic sleep deprivation. I do generally strive for accuracy, so you have my sincerest apologies and this is a note just an FYI in case you actually were interested in finding that app.