Hospital screw up /No room there for Nik /Have to reschedule

Well, this day just didn’t turn out a thing like I expected; that’s both a good thing and a bad thing.

It started off at 1:30 this morning when I was up being ill from something I ate last night. Well, that and quite possibly a bit of anxiety —which is actually not typical for me, but this EEG trip had me pretty wound up. Still not feeling great, I spent the rest of the night sleeping sitting up in bed. Highly relaxing —not.

Nik woke in a wonderful mood and laughed and giggled his way through our morning routine and all the way up to and including PT with Miss T. It was during OT that he fell apart. Usually Nik is all smiles and love for Miss D but today he just didn’t want to do anything she wanted him to do. It didn’t’ help that Miss N, the intern from the local community college who has been working with Nik for the past several weeks, was doing her video interview and treatment today for her class presentation tomorrow. Not that it was a problem but that Nik knew something was different —maybe he sensed the pace was slightly disjointed —and he wanted no part of it.

The interview portion was really interesting for me. Miss N asked me all kinds of questions about what life with Nik was like at home, what challenges do we or did we face with school , what changes did we see in Nik as a result of the therapies, etc. It was a great opportunity for me to really look at my child with a slightly different perspective. Not just Nik, my miracle child, but more as a representative at large of children with disabilities. I had to consider carefully what I wanted the students in Miss N’s class to take away from her presentation; what did I want Miss N to take away from her personal experience with Nik.

I talked about the need to always presume competence no matter what the test scores may indicate. I specifically talked about our experiences with Nik and testing and why he scores so low on standardized testing methods. I talked about the erroneous assumption that educators and service providers often make in thinking that because a child cannot speak or write that they cannot either understand what is being communicated to them and have nothing to communicate. I shared some of the personal discoveries I have made about Nik —and because of Nik— and how much he has to “say” if I am willing to take the time to learn how to “hear” him.

We talked about the need for sensory processing to be thoroughly addressed, especially with children who have spent long periods of time in the hospital. I touched on the importance of re-training or re-awakening neural pathways that either didn’t develop or were somehow interrupted with medical interventions or illness or plain neurological differences. I hope I didn’t overwhelm poor Miss N.

When Nik was born, Niksdad and I decided the experience could either make us or break us; we chose to become stronger. It has not always been the easy path to walk, I can assure you. But when I realize the opportunities we now have to help influence the training of future therapists, educators, and medical professionals, it makes it worthwhile. Not that being Nik’s parents isn’t worthwhile! But knowing that we can use our experiences and insights to help other children, other families —well, that was just part of the unspoken mutual agreement we made years ago.

So here we are at 10:30 in the morning and we’ve just rocked Miss N’s world. Let us proceed with the rest of the busy day. Just enough time to head home and play for a bit before lunch —the usual ninety minute affair of tube feeding, oral food play, and then sitting upright for about twenty minutes to keep Nik’s reflux at bay. After that, Nik slipped into his backward jammies for a short one hour of quiet play. (The jammies are for inhibiting hands in his pants —particularly messy if there’s a BM involved!)

Then, back into clothes and out the door for our very first adapted swim class! This one was a real crap shoot since Nik can either love or hate the pool depending on the day, the planetary alignment, etc. Today was somewhere in the middle, I think.

The teacher, Mr. Tim, is a very nice young man; Nik took to him right away. There was only one other child there today; there are a total of three boys including Nik. All three are autistic and all have varying characteristics and strengths. Nik is half the age of the other boys and is not quite ready to keep up with them. He is also the only nonverbal one of the group.

After a few minutes of observing Nik and his shifting level of comfort in the water —as compared to the other boy’s ability to paddle around and jump by himself into the water— Mr. Tim and I agreed that Nik really needed to be in a toddler-oriented class. Since Nik’s schedule of therapies precludes us from taking the regularly offered class —and I’m not sure how much he would get out of that particular group setting just now— Mr. Tim is going to work with him one on one for half an hour every Monday afternoon. I think that will work out very well for Nik; he loves the water and it really gives him some wonderful sensory input that helps him self-regulate so well.

So, now Nik’s week includes feeding therapy on two days, PT and OT one day (but getting ready to request a second day), speech therapy, play group, and now swimming. Whew! When I write it all out it seems like too much, but I know we break it up into manageable chunks. And I also know the steady, consistent progress I’ve seen in Nik over the past six months. I just cannot imagine we would be where we are today if we hadn’t taken him out of school.

So, by now you must be wondering what the hell happened with the EEG, yes? I’ll spare you the story of how I found out that it wasn’t going to happen tomorrow —it’s long and frustrating and involves crossed signals, dropped balls, and one very frustrated mother. Suffice to say, the hospital has only one room in which the video EEG’s are done. That same room serves as a regular patient room when necessary. Apparently, it’s necessary right now. In fact, the woman I spoke with late this afternoon told me that they had been canceling or postponing many video EEG studies lately because the hospital was so full. And while I can appreciate the need for postponing, it sure would have been nice if someone had planned on telling me before I showed up on their doorstep tomorrow with a rambunctious four year old and a carload of stuff!

The silver lining in this dark cloud has been the stellar performance of our new neurologist and his staff. When I left an “urgent” voicemail for Dr. G’s assistant at 4:45pm telling her the hospital didn’t have us on the schedule for tomorrow, she not only called me right back and helped me formulate a plan, she also asked me how Nik was doing —and then really listened when I told her. She must have pulled his chart and gone right to the doctor because not fifteen minutes later Dr. G himself called me. Now you may recall that our last neuro, reputed to be the most brilliant one in the whole state, never bothered to return phone calls or provide written reports unless absolutely hounded to death.

Dr. G and I discussed a back up plan —involving an ambulatory EEG (24 hours done at home) if the hospital could not accommodate us within two to three weeks. He also looked at Nik’s most recent blood work and told me that his Depakene level was actually low and we increased it to see if that will help a bit. But most importantly, he responded appropriately; he acknowledged the problem (which is actually out of his hands as he is not on staff at the hospital we were going to), he came up with solutions, and he took personal interest in the outcome. I love this doctor.

So, here I sit tonight, with my head spinning from the whirlwind of activities and information; it sure feels like it’s been a long year, er um, day. Stay tuned…

More fun on the way /You never know what you’ll get /In a day with Nik!