It is said the darkest hour is just before the dawn. Each day brings with it a new dawn and a darkness which, depending on circumstances, can seem bleaker and blacker than one thinks possible.
In the wake of this awful stuff, and on the heels of this amazing stuff —well, it just keeps on getting better and better. Sorry, you couldn’t sense the sarcasm oozing from those words? Let me elaborate.
Today, Nik had the worst experience ever with PT and OT. We had back-to-back appointments this morning after another phenomenal session with Miss M. Nik actually made it to the parking lot again before he lost it. Like last time, he went inside —screaming and crying in protest the entire time. That was the good part. I’m sporting a fat lip tonight as a result of letting my guard down. Technically, I didn’t really let my guard down; it’s more that I didn’t think Nik would react as strongly as he did today; he reached a new high. Or is that low? Whatever your perspective, let’s just say that Nik’s flailing head and Mommy’s lip are not a good match.
Miss D worked with Nik and tried to follow his lead and redirect and distract him when and where she could. They even took a walk outside in the sunshine and fresh air while I waited inside. It went great until Nik saw our car and tried to open the door; when he couldn’t open the door and Miss D led him away from the car —you can imagine the scene in the parking lot. He completely fell apart and just was not able to pull himself back together —even after Miss D brought him inside and I held him and sang to him; he quieted for a moment but then ramped right back up.
We’ve hit a crossroads in many areas it seems. First, and I wasn’t certain I wanted to share this yet but it seems appropriate at this junction, our neurologist wants to put Nik on this medication. Niksdad and I have made it clear that we are not yet ready to go down that road until we have exhausted all other possibilities and ruled out any potential underlying physiological causes for Nik’s pain. And it is pain; I can see a very marked difference between his pain episodes which strike out of the blue and the temper he displayed today.
Today. Ah, it was really difficult to not react negatively when talking with Miss D about Nik’s cognition and behavior. She truly thinks that he “knows what he’s doing” and seems to think he has some measure of control over it. I, on the other hand, do think he knows what he is doing but that he cannot control it —yet. It was agonizing to watch as Miss D held Nik by the arms in a chair and spoke sternly to him as I was putting on my shoes; it was nowhere near a true restraint such as this, but it was enough to make him even more agitated. And, to be fair, she had to hold him in order to keep him from running out the door into the parking lot which borders on a very busy road. None the less, I hurriedly donned my shoes and got Nik into the car.
I have to accept the fact that Nik is growing bigger, stronger, faster, and smarter. With that growth and development, I assume, will come tremendous gains; but they seem to be coupled with equally tremendous challenges in coping with change, communicating his needs, and being in control —or not, as was the case today— of himself and of his environment. And yet, I know that Nik is not an angry and aggressive child; this behavior is fairly new and, until recently, I have usually been able to help him work through it.
I cried all the way home —mostly out of frustration at not knowing how to help Nik navigate his world, our world. For the first time, I had to see the potential for Nik to be a danger to himself or to others should his actions be misunderstood or if someone tries to restrain him. I immediately thought of this book (which I had dismissed in the past as not being relevant to Nik) and wondered if there might be something there to help us. Until very recently, I haven’t seen Nik as an explosive child; he’s never done anything to anyone that has ever given cause for concern —except to himself.
There does seem to be a correlation, or at least I think there may be, between these explosive outbursts at PT and OT lately and a rougher-than-usual afternoon; after mornings like today, Nik doesn’t nap and his tolerance for frustration seems to be nearly nonexistent. This afternoon, he was almost manic in his nap time antics —see-sawing from giddy laughter to flat out shrieking hysteria at still being in his crib. Poor Niksdad was here with him while I was at the grocery store; when I came home, Nik had four new bruises on his head and face —one across the bridge of his nose from pressing his face so hard against the crib slats. Hours later, his forehead still bears the imprint of the mesh netting from his crib tent.
I know that we are not the first family to experience this and we will certainly not be the last. But I’d sure love some thoughts and maybe even a little advice on ways to weather this storm and still keep my sanity —and keep Nik’s beautiful little face intact.