It’s been a super long week…seven appointments in four days, 300 miles on the car (for the appointments), and a very high stress day yesterday which involved a missed workout, mopping the floor twice, wiping down the TV and entertainment center and shampooing the sofa. Oh, and a solo-parent outing with Nik on Thursday night in a non-child-proofed house! In spite of all that, Niksdad and I managed to squeeze in a date Friday night and all three of us had dinner with my parents tonight. I even managed to fit in three workouts this week.
In other areas:
Keep your fingers crossed…I think we’ve debugged the episodic pain thing (no thanks to any doctors though!), or so it seems. Since we increased Nik’s caloric intake and are making sure he gets a snack or something roughly every three hours, Nik’s been sleeping anywhere from ten to twelve hours each night…straight through! And the day time episodes have diminished significantly; we’ve gone from ten plus episodes a day to roughly half a dozen or fewer a week now. I really do think it has something to do with his metabolism or his endocrine system; it wouldn’t surprise me as I have some issues there as well. Still, we are going to go ahead with the video EEG (Feb. 26-28) to make sure it’s not related to any seizure activity. Nik’s seizures are, for the most part, subtle and can be easily missed. Occasionally, like last night, he will simply drop. Fortunately, Niksdad was on hand to catch him so we avoided any bloody lips or nose, thank goodness!
There are times that the pain seems to strike Nik completely out of the blue; he’ll be having lunch or playing happily with a toy and then —all of a sudden he begins to cry and punch himself in the head or poke at his eyes. Those are the ones which cause considerable consternation for us all. But, there are times when Nik uses the same behavior to communicate his anger, frustration, or boredom. Teasing out the difference between the two has been much easier since we made the assumption that any actual discomfort may be caused by hypoglycemia or something in that realm.
Really, though, I’ve got to give Nik credit for his smarts; he’s identified the fastest and most effective way to get Mommy and Daddy to drop everything and come running when he wants us. Since he can’t call out for me, and he can’t tell me what he is feeling —yet—he bangs his head. I don’t like it but it makes sense to me. The next step is to work on finding ways for him to express his frustration without causing himself physical harm. My mother and I are constructing a very large “crash pad” that I want to try to get him to use for those times. We’ll see how that works out. Meanwhile, I need to get things rolling to procure the AT devices which were recommended at Nik’s recent AAC evaluation. If we can get those into use I think we will have a pretty good shot at, eventually, making some headway in minimizing Nik’s acting out of frustration.
I don’t know if Nik is going through some sort of separation anxiety phase right now —or maybe it’s just a control issue; lately he wants me to play with him constantly. He loves to play with his shape sorter —he has three different kinds, two of which he has mastered and the third he is well on his way to mastery. If I sit with him and talk to him while he works —Oh, look it’s a red triangle, Nik. Where does the red triangle go? Can you show Mommy the blue square? —Nik will empty and fill the darned thing a dozen times or more if I let him. But the minute I turn away —even if I get up to blow my nose —Nik gets up from the floor and begins to methodically throw all the pieces over the gate; he never seems upset —in fact, he laughs this giddy little giggle while he is doing it. If I stop him and sit down with him again he will continue to play happily.
The kid is insatiable for the company of Mommy or Daddy. We don’t necessarily have to be doing something directly with him; we just have to be close enough for him to engage us if he wants to. The irony is that when I try to take him to the Y and put him in the Kid Zone (childcare) so he can play with other people, he completely freaks out. Last week he got himself so worked up that he threw up everywhere. I know that if I can spend a few minutes with him and distract him with the toys he will be fine and won’t even miss me.
Yesterday morning was beginning to be a repeat of last week; when I told the attendant that I needed to help Nik transition, I was told emphatically that no adults other than Kid Zone attendants were allowed in. This particular person didn’t know Nik (I don’t usually take him on Saturdays) so they didn’t understand the need. To them, they just saw a small child with a behavior problem; their attitude was pretty much Tough luck, lady! I left angry and frustrated —and had to blow off my workout partner! The people that work there during the week all know Nik and work with me to help him adjust. In fact, when I see these same ladies out in the grocery store they all ask me Where’s Nik? How’s he doing? We haven’t seen him in a while! There’s a relationship which gives us the flexibility and understanding to bend the rules a bit.
Yesterday was my first time encountering a person who either didn’t get it or didn’t care; it was eye opening for me in many ways. I realize there will be many, many people who neither get it nor care and I need to figure out how to handle it in a way that takes care of Nik without alienating others. I know we will encounter it more and more as we venture out into the world beyond the safe and familiar confines of our home.
Today, though, provided a foil for yesterday’s anger, frustration, and disillusionment. Niksdad didn’t have to work so we had a nice little family outing this afternoon —at the Y! We figured it would be a good idea to see how Nik handled being in the pool before we plunk down the fee for the special adapted swim time I wrote about here. It’s been about six months since Nik has been in a pool of any sort so we weren’t quite sure what to expect.
The tears started as soon as we pulled up in the parking lot; seeing Nik’s bottom lip quivering and the tears running down his cheeks nearly undid me. But we took a collective deep breath and forged ahead. Once Nik realized he wasn’t going to the child care area he calmed down —until he got into his suit and entered the pool area. Does the phrase “clinging monkey” give you a clear enough image? As soon as Nik got into the pool with me, the tears and panic set in. I don’t know if it was a sensory issue or just plain old fear; I suspect it was some vestibular insecurity. Whatever the cause, it wasn’t pretty!
I held Nik tight in my arms and sang one of the lullabies from Mary Poppins in his ear. That helped a bit but he was still really clingy; Niksdad and I were both surprised as Nik was once so comfortable in the water. Eventually, we found a distraction in the form of some pop-beads which were floating in the water. Niksdad and I got Nik interested in taking them apart and putting them together again; the whole time I was giving him some deep pressure around his pelvis and making sure he could feel my body under his. About fifteen minutes after we got into the pool, Nik relaxed his grip on me and seemed to settle in. By the time we were done —about thirty minutes later —Nik was only holding onto my index fingers, splashing, kicking, and even dipping his face into the water!
The whole family left the pool in a great mood. You might say we were floating. Not a bad finish for a week that started off feeling like we were drowning!