I’m still stewing on my thoughts and reaction to Autism: The Musical and hope to share them with you soon. Meanwhile, here’s a rambling update on life in Nik’s house lately…
I am thrilled to report that the duct tape experiment has been a rousing success! Not only has Nik not tried to wiggle his way out of the tape (and, therefore, his pajamas), he’s become quite enamored of the process! I can’t help but wonder if the slight snugness of the tape around his upper torso provides some proprioceptive input that is comforting to him. By the third day of taping him into his pajamas, Nik began to willingly put his hands up in the air to assist in the process! It’s really very cute to watch.
I won’t question the whys and wherefores; I will simply say that my washing machine no longer feels abused on a daily basis!
Of course, to every yin there is a yang, to every up a down. Though we’ve managed to quell the Houdini and Poocasso behavior, there has been an increase once again in Nik’s mysterious pain episodes which seem to strike without warning. There have been nights when the only thing I could do was hold Nik in my arms in the aftermath of some pretty horrific head-banging, face-punching, writhing episodes. One night, through his tears, Nik started to hum his favorite song from Mary Poppins; the poor dear was trying to soothe himself and asking me to help!
Niksdad and I are absolutely certain it is not seizure activity; we see the neurologist this Friday and will discuss other possibilities to explore. I still think it has something to do with some type of cluster headache or other vascular activity. Nik gets this odd swelling of the area over his right mastoid process —almost as if his skull is swelling but it isn’t. Mastoiditis has been ruled out —the symptoms are too erratic and they just don’t quite seem to fit —though no CT scan or x-ray has been done to definitively eliminate the possibility. Niksdad and I wonder if it could have something to do with his lymphatic system as he’s been getting so many infections, too.
The search for signs of intelligent medical life to aid us in solving the mystery continues…
In spite of the ups and downs of these sudden pain attacks, Nik is thriving. Each day brings some new and highly amusing thing. Lately, it has been an impressive display of his age-appropriate evasive tactics when it is time to get in his chair for a meal (and at bed time, too). Well, that and some highly impressive (and rather unorthodox) motor planning and following instructions. See for yourself in the video below. (Sorry, it’s kind of long but I cannot edit QuickTime videos in Windows.)
Now, please bear in mind that this is the same child who just started walking last August, at the age of 3 and three-quarters years. The same child who is considered legally blind in one eye. The same child who was once labeled as having diminished mental capacity. When I look at this video, I marvel at the progress Nik has made and I am reminded of the miracles that can happen with love, determination, and faith.
There are some things no one can ever know or predict; parents who simply swallow whole the dire pronouncements of doctors about the future of their children are, in my opinion, only serving to ensure that bleak future comes to pass.
In a related vein, there’s lots of advocacy-related stress going on behind the scenes here the past week or two; continuing to negotiate with Medicaid to provide coverage for Nik’s therapies —as well as pushing for an increase to help boost some emerging skills and develop some critical new ones, finding the right medical avenues to explore for answers to the mysterious episodic pain, and —as of Monday —a struggle to get Nik’s communication devices. It feels like we’ve gone from cruise control on the open road to stop and go traffic in rush hour —say on I-5 or the beltway! Days which once seemed wonderfully smooth and easy are suddenly filled with mountains of paper work, follow up phone calls, more paper work, more phone calls, and efforts to keep my cool in the face of idiotic bureaucracy. But I’ll save that for another post —one which may require a bit of a preface.
There’s more good stuff going on…but I’m going to have to write that in yet another post. LOTS to catch up on…
ETA: Oops, thanks Kristen for asking “How you doin’?”* I forgot to mention that my fall down the stairs last week seems to have left me none the worse for wear. I’m pretty much back to my old self —wrist and all.
(*For some more really amusing Joey-isms, click here.)