Memories

(One of) The Worst Day of My Life—a Special Needs Parent’s “Normal”

I found a memory on Facebook this morning, from 17 years ago, 2009. Facebook, at that point, cut off messages, and some of it was lost. Thank God, some of it is lost to time, blurry and insubstantial. [For new readers: my son, now 33, has profound non-verbal autism—acquired, not born—and epilepsy. And other diagnoses—PICA, anxiety, MR/IDD etc. He was labeled with an “intractable seizure disorder,” meaning the seizures could not be controlled, for many years. A good day was 6-7 seizures. Today, he is down to 2-3 small seizures per year. The only thing we changed was to add chiropractics, but that’s another post. He lives in a group home 2 miles from our family home, and we, his family, are all very involved in his life. He requires two adults with him, around the clock, to ensure his safety. I am very grateful for his staff, who love him very nearly as much as we do.]

YESTERDAY WAS A DAY I NEVER WANT TO REPEAT. Thank God for excellent staff...people who are really good with Nate and really care. Yesterday morning, we ran to the regular doc's office to check out the bump on the back of Nate's head from the day before, (message cuts off here—FB limits—we were sent to get an EEG from our neurologist, 100 miles from home.)
The patient before Nate was a 5 year old who apparently cooperated in every way. Not so Nate! At least he wasn't screaming, fighting, biting, and sobbing like he used to. But they used the paste instead of the glue...and couldn't keep enough leads on his head to get 20 minutes’ decent reading in 2 hours...sigh. They gave up.

We headed to Perkins for supper, got 3/4 of the way through eating, and he seized (myoclonic)! He slammed his head HARD against the rim of the table (thank God for rounded edges!!) The plates were heavy stoneware, and the glasses were full of our drinks, and all that stuff BOUNCED when his head hit the table. It rose at least an inch. He proceeded into a generalized tonic-clonic [grand mal] seizure and seized for about 3 minutes...with a mouthful of food. We managed to get him out of the booth and onto the floor, and he came out of it, blinked a few times, and chewed up and swallowed his mouthful. [no, there was no post-ictal period. He doesn’t always. And no one knows why.] Sigh....God protects us in so many ways, He's so good.

We decided we needed to go to the ER there, rather than try to make the 100 miles home and go to our own ER. A few years before, when it was just his father and I (so, before the group home) he had gone into repeated myoclonic seizures, and we’d gone to the ER. The doctor there insisted that the only treatment was Depakote. SURPRISE! ER docs don’t have much training involving seizure disorders. I explained patiently, over and over, that we had tried Depakote (an excellent drug for some patients) in the past, and it resulted in INCREASED seizures for Nate. It was clearly in his record. I offered to call his pediatrician, or his neurologist, or both, but the ER doctor was offended that I was questioning his judgment, and refused. [Doctors are only human—and this one saved my uncle’s life at one point, so do not judge too harshly—oh, WTH, judge harshly.] I actually heard the doctor and nurses whispering about “Munchausen’s.” That terrified me, as I knew that our current caseworker with the county was not reliable. [It’s also the reason that we applied for guardianship before Nate turned 18, so no doctor could overrule us. Or caseworker. Not without a legal fight.] We spent hours that day in a tiny trauma room, with Nate seizing every few seconds, then farther apart, and finally stopping after we’d been there for about 5 hours. With zero medical intervention. We went home, and our neurologist, on hearing this, wrote up a protocol that, if it should happen again, the pediatrician and neurologist would evaluate with me, and if needed, call for a helicopter to be flown straight to Hershey Medical Center (where our neurologist was at the time.) “Skip the local ER” he told me, and, “if you ever have time and energy, volunteer to teach them about seizure patients.” Of course, I was “just the mother—a walking womb—and they weren’t interested.

So we went to the Danville ER, with him fighting the whole way. Often he recovered from seizures with his usual energy, although sometimes he had post-ictal periods where he slept heavily and couldn’t be wakened. He was OVER this day, and wanted to be in his own bed at home. He was very unhappy, and a handful for the two staff and I--except for the short while he slept on my lap in the ER waiting room and had 15 little seizures (myoclonics or very short tonics.)

We were finally seen....sigh…..and at about 9 pm headed for home. Ran into construction on the way....sigh.....LONG, LONG day. I’m sure we were home by midnight. The post (on Facebook) finishes with: “He's probably fine--we're going to watch him for a couple days, but he's acting like Nate!! We're SO very grateful it wasn't far worse. He hit right on his forehead, so there was very little mark last night--there's nothing there but skin and bone to make a bruise.
Thank God that although it was a nightmare day, it was actually far better than it could have been....

Today my son is nearly 34. He’s happy, mostly healthy, and as safe as we can make him. We take him out once a week for supper and ice cream. In the summer we go to the park (as long as it’s not crowded and noisy) and in winter, often to our home, where he checks to see what we’ve changed since his childhood. His bedroom is now my office, and doubles as a guest room. Sometimes he lays on that bed, and grins at me, while I sit in my office chair. His oldest sister comes every week. His younger sister lives too far away, but she and her husband visit him whenever they’re home, and Nate loves his brother-in-law. Extended family often see Nate in the community, and stop to talk. They miss seeing him, but our big family gatherings are too much for Nate. We do our best, and most of the time, it’s enough.

It will never be enough, though. We can tell that Nate’s intellect is intact, but that whatever’s going on with his body doesn’t allow him to express it. The autism, which came out of the blue and robbed him of the child he was, social, loving, happy, talking and counting and loving life, is like a stifling jacket he wears around all the time. He’s never free of it. But somewhere, deep within, is that boy. One day we will find a way for him to “speak” and express himself, and we will be astounded at all that he is.

For more of Nate’s story, watch this space. My book, Mending Shattered Dreams, a memoir of 30 years with autism, will be out later this year, from Sunbury Press. And I’m sure (once I buy more kleenex) I will write more posts as well. Cherish every precious moment, and know, that even in the worst times of your life, God is there, and we will all get through, together.