I have so much on my mind —therefore on my endless list of things to write about, think about, research, or otherwise obsess about —it’s hard to know where to start and seemingly impossible to form elegant prose lately. (Well, that presumes that I ever had that specific ability!)
So, today I give you a simple brain dump. In no particular order…
Health follow-up: Nik’s still having some milder bouts of the persistent and weird pains that seem to be headaches but we really aren’t sure. We’ve gotten some articles from the neurologist about Red Ear Syndrome which can occur with migraines —but not always. So, we still have more reading and research, more data collecting and serious thinking to do before we take any steps toward medications. You already know my feelings about going down that road.
Eating: Like a pig. Seriously, three months ago the child was barely taking tastes of things and now he is voraciously grabbing at nearly anything. He’s taking in at least twenty-five percent overall by mouth on a daily basis. The percentage was a bit higher but we’ve had to increase his caloric intake significantly; when we weighed Nik yesterday morning, he’d lost weight —again.
Essentially, Nik’s down nearly a pound from where he was in August. And it shows. You can’t see it in pictures —mostly because I am not going to post photos of my unclothed child on the internet —but when he takes his shirt off, I can actually count his individual ribs from across the room and without my glasses! Seriously. His weight (and his height) now places him in the third percentile for his age group. His body mass index has dropped from the seventy-fifth percentile to twenty-third percentile. It seems no matter what we do we cannot keep weight on this boy. We see the nutritionist again in about four weeks. Meanwhile, we’re supplementing in simple ways by adding butter or olive oil for extra fats and calories.
Home schooling: It’s time to begin in earnest now that Nik has reached “official school age.” We are going to join a local home school umbrella group which will handle any attendance and record-keeping items with the school district so we don’t have to worry about any truancy visits! The task now is trying to find a curriculum that will challenge Nik without frustrating him —or me —into consistent meltdowns. I’m just beginning to evaluate some that have been recommended to me by various people.
Nik is showing signs that he is clearly learning and understanding so much more than he is able to communicate. I need to really assess where I think he is and what tools I need to help him develop in order to be ready for more advanced learning than he currently is doing. For example, Nik has pretty much mastered the alphabet in terms of being able to identify the letters on request. Apparently, it’s happening pretty fast with numbers, too! Just yesterday, I conducted a little test with one of his toys, asking him to identify numbers in a random sequence. It was slow and painstaking but it was one hundred percent accurate!
As I see it now, my biggest challenge —Nik’s most important goal at this point —is to find a way for Nik to communicate his intelligence with other people. I thought I had an idea of the path we might take to get there but now I am not so certain. Nik responds with some sign language when he is prompted to “use your words.” But he won’t use signs to initiate a request —we still get crying or physical prompting. I don’t think PECS is the right tool for him just yet. His visual scanning, tracking and attending skills are very poor. As a result, the cards become great toys or teething/mouthing objects with no real meaning to him. Similarly, the button devices we worked so hard to get for him still don’t have any concrete meaning for him and I cannot leave such things alone with him or they will be destroyed in a short time.
I think it’s time for another visit to the fabulous AAC guru we saw a year ago.
The next big challenge is to find ways to engage Nik that will help him develop a greater attention span. As I mentioned, he doesn’t scan and track well; this hampers his ability to stay focused —quite literally —on a task at hand. Because he cannot communicate yet in a way we can understand, we have no idea if it’s too overwhelming, too distracting, too painful, or that he can’t see things clearly. I think it’s time for another visit from the itinerant teacher for the visually impaired; maybe she has some exercises we can try to help him improve in this area.
Social Development: Nik has been giving very clear signals lately that he wants to play with us whenever we are around; he does not like to be alone anymore. This is both a blessing and a curse; it means I can no longer leave him playing happily in the family room while I tend to some other things elsewhere in the house. I still get small —very small —windows of opportunity here and there but it’s not enough. The upside though is that he is clearly becoming interested in interactive play. Not that you could have proved it from this week’s foray into a new play group. Still, it’s emerging.
The new play group is interesting; it’s led by the same therapists he sees for PT and OT, Miss T and Miss D, but it is very small. There are only four children —all boys — including another one named Nick; as Mom-NOS would say, I think he’s French, too. The format is the same as his old play group —you know, the one we had to leave suddenly due to his scaring all the children with his searing, screaming, head-banging pains. Uh huh, that one. Each week has a theme supported by stories, songs, some simple sign language (only two signs), and a variety of activities to engage all the senses.
This week, Nik seemed to be in his own little world as he wandered around the room with a musical toy in his hand. But there was a subtle difference this time; he was actually taking the time to explore things —touching the “snow” cotton balls or touching the stuffed snowmen. He also didn’t run into or over anyone on his way toward a toy or activity. A year ago he just plowed right through as if there wasn’t another body in his path! He even stepped around one of the other boy’s baby sister who joined us. He showed a much greater physical awareness of his environment than he has in the past.
I had to work hard to get him engaged in some specific activities but he did, ultimately, participate. For the first time, ever, Nik actually touched glue and helped decorate his own little snowman picture. Very big doin’s for my little guy! He even sat, mostly calmly, in the story circle at the end of the session; he wasn’t so much interested in the cute story about the old lady who swallowed some snow as much as he was in eating the vanilla ice cream cup snack! I fed him as he sat next to me like a baby bird —opening his mouth for each big bite.
It’s been a super cold week here —as it has nearly everywhere —with record temps and a small boy who likes to be unclothed. We’ve discovered that the play room is nearly ten degrees colder than the rest of the house; there’s not too much we can do about it — it’s a design flaw in the construction of this old townhouse and we can’t put a space heater in the room beacuse Nik doesn’t understand the boundaries of safety or the concept of getting burned —a concept I’d prefer remain theoretical for a very long time! We’re working on insulating places we can, caulking around gaps in the hearth, etcetera. Meanwhile, duct tape has become our daytime friend as well. Nik’s been a pretty good sport about it, too.
With Niksdad’s return to school —his last semester of his R.N. program —the responsibility for Nik’s every need returns pretty much to my shoulders. I forgot what an adjustment that is; I got spoiled by Niksdad’s month-long winter break. The transition has been a bit difficult for Nik, too. He misses his Daddy and knows he’s not getting the same attention he has gotten for the last several weeks.
Consequently, it’s not all been a bed of roses this week; like everyone, we’ve had our moments where we weren’t sure we would survive the next ten minutes or if we would sleep through the night. We did survive; we did not sleep through the night. There were moments of utter delight and sheer hell all woven together into a lush tapestry with hues so subtle that only the weaver would know they were there.
Yep, I know you know what I mean.