I like to put my own houses together in my head. They're usually sided with wood and thick, drippy, rust colored metal (not one inch of stucco) and have floor to ceiling windows that look out onto some sort of courtyard swimming pool surrounded by leafy green trees. I've designed houses in my head for many years now, but for the past eight months or so these houses have included accommodations for my future adult children who will most likely be living with us for the rest of their lives. The trees over the pool are for Cale.
Shane and I pulled up to Barnes and Noble today, walked through the parking lot full of loud, chatty people, and went into the bookstore. It always amazes me that these bookstores are the same everywhere - almost as identical inside of Cracker Barrels but not quite. Upon entering, I have a sense of place, that I'm at Barnes and Noble, but at the exact same time lose the sense of where I'm at in the world. I often forget which city I'm in inside of a Barnes and Noble, and walk out again later to get slammed with a twisted sense of time and direction. "Is that 24th Street or Bell Road?" or "What month is it?"
Sometimes if I'm alone and not paying attention, I accidentally walk to the wrong side of the building (to where the car would be parked in Billings instead of Phoenix) before I notice. And sometimes, even when I am paying attention, I still can't get an immediate sense for the street. That's when I use the weather to tell me where I am - walking into a dry freezer is Billings. Walking into a dry, hot oven is Phoenix.
As I attempted to make my way through to the magazine section today, I was stopped by a table that sat right in the middle of my path. On this table was an ivory colored sign with green writing that said Inspirational Stories. I stared down at the books on that table for a long time. All the usuals were there - Eat Pray Love, Cherries in Winter, The Boy Who Harnessed the Wind, and I found myself thinking about how sweet these titles were all bunched together like that. It got me thinking about the title of my own book which I'm currently writing. I'm nowhere near choosing a name for it yet, but lately I've been considering the title F U U U C K. What do you think? No? You don't think it would end up on that table?
The psychiatrist diagnosed Cale with Extreme ADHD in addition to the Autism about a month ago. But at the time, the ADHD was the least of our worries since Cale was still banging his head on the ground. Still, she said she wanted to put him on something for the ADHD and we consented whole-heartedly ("whatever helps" were our exact words). First, however, she needed a blood sample so she could make sure everything was functioning properly before she introduced medication. So we made an appointment to see her again a month later and I took Cale into the blood lab the next day to have his blood drawn. Then we waited.
While we waited, I started Cale on cod liver oil because I read an article about how Autistic children tend to have serious deficiencies in vitamin A. Cod liver oil, being the only food that contains high enough quantities of natural vitamin A to replenish such deficiencies, was what was recommended. Therefore that's what I put him on. Shortly after that SARRC called and said they had an opening (finally) to start ABA based behavior therapy with Cale. And thank God. It had gotten to the point where Cale was hurting himself and others, all day every single day.
Over the next three weeks the symptoms of the Autism were reduced somewhat by the ABA therapy and the oil. The constant tantruming was reduced a ton and he even started saying a few words again. However, at the exact same time, the symptoms of the ADHD seemed to absolutely skyrocket. Maybe he'd always been overly active and I just hadn't realized it with so much other stuff going wrong. I don't know. But by the time the appointment with the psychiatrist came around again, I was desperate for her to relieve the ADHD symptoms. I'm honestly not sure which is worse - a screaming head banger or a child who's happy as a clam but climbs the refrigerator six hundred times during the course of preparing dinner.
When we finally went in for the appointment, we waited for approximately two minutes before Cale started pulling the cushions off all the chairs in the waiting room, opening and slamming the door between the receptionist's desk and the waiting room, opening and slamming, opening and slamming, opening and slamming, turning the lights on and off, on and off, on and off, on and off, on and off, while the receptionists (who had no idea what they were up against) made futile attempts to stop him with, "No no sweetie, go play in the waiting room." He completely ignored them. It honestly makes no sense to my child why you would acknowledge it, in any way what-so-ever, when someone is talking to you.
After the second time he tried to escape out the What? Are we stupid in our clinic for children with a front door that easily pushes right open onto the parking lot? front door, I finally looked at the reception and said, "Look. I realize that we haven't been waiting long, but we have a very narrow window of opportunity here before he starts actually breaking things. And to be perfectly honest with you, I'm too tired to stop him."
"Oh," she said, "Well let me put you into a conference room to wait. There's nothing he can hurt in there and he can't escape. How would that be?"
"Thank you," I said gratefully. And we were locked in a conference room where Cale turned the light on and off, on and off, on and off, on and off, on and off, as fast as his little hands could flip that switch during the entire time we waited.
I had a blinding headache by the time we finally saw the psychiatrist and I told her immediately that we were ready to have him medicated for the ADHD. She told me, however, that she was very sorry but that Cale's blood work had not come back normal.
I sat there with my mouth hanging open and stared at her. That's the moment the potential title for my new book landed softly in my head.
Cale has to see four different specialists next week, all of whom have waiting rooms just waiting to be destroyed. Some of them are several hour long visits (I hope for their sake they have conference rooms). And the fact that we got him in to four different specialists in a week's time (incredibly fast here in Phoenix) has me wondering exactly how worried I should be.
His blood sugar is low, some sort of other blood levels are high, and his cholesterol is high. Very high. High for an adult high (he's four). He has to see a pediatric cardiologist at the Pediatric Cardiology Institute at the Phoenix Children's Hospital (a place that has a year long waiting list for everything else I've ever tried to use them for).
The psychiatrist asked me if I'd ever heard of the gluten/casein free diet and told me that it is strongly recommended (at least worth a try) for autistic children. I told her that I've had him on that diet for over a year now already. Then I told her that I had just put him on Cod liver oil and that he's always eaten a lot of bacon, but she told me that the high cholesterol couldn't possibly be due to his diet especially since he's already gluten/casein free. She said he'd have to be drinking cupfuls of lard every day to get it that high through diet. So the fact that it's high, and that it's not due to his diet, means that something is going wrong. And no, of course, they couldn't give me any clues as to what that might be but they did let me know that they won't be starting any ADHD medication until they fix whatever it is.
The following afternoon, after Cale's Habilitation therapist and I had chased him around the house for three straight hours (literally) trying everything we could think of to engage him in play, I got desperate. He would not stay in one spot in a room and play for more than three seconds at a time, nor would he stay in one room for more than twenty seconds before he'd run into another room. His behavior was absolutely wild, punctuated with moments of uncontrollable screaming, and flipping back and forth from crying to laughter to crying to laughter. He was running and running and running, and breaking everything he was strong enough to break.
We even tried putting him in the tub and giving him a cup to pour water with. This ALWAYS calms him down. He poured the water for about five seconds, laughing, and then for no reason what-so-ever screamed, threw the cups, and got out of the tub soaking wet and naked and ran away again. This threatened me a great deal because the bathtub and a cup is my only fool proof trick to calm my son when nothing else will work. And it didn't work at all.
Like I said, I got desperate. Really, really desperate. I knew his occupational therapist was coming next to do a therapy session and the idea of chasing Cale around the house for yet another hour with yet another therapist was just too damn much. I really wanted it to be a successful therapy session. Plus I was worn out and my feet were killing me. So I gave him three teaspoons of my dearest friend, cold coffee.
What happened next was nothing short of an absolute miracle. It took about twenty minutes for the coffee kick in, but then the transformation was swift and complete. He calmed. His movements slowed waaaay down. About then the O.T. showed up and Cale proceeded to stand in one place at the coffee table and put puzzles together with him for the next forty five minutes straight.
I sat in the chair, exhausted, and watched with a mixture of pure awe and a terrible sense of guilt. The O.T. was sitting on the floor at the coffee table watching Cale carefully and he finally said to me, "I've never seen him put puzzles together before."
I was slouched in the chair with my hand covering my mouth lest my anxiety escaped. And I actually startled when he spoke to me. I looked at him wide eyed, with as straight a face as I could muster.
He kept watching Cale with that confused crinkle between his eyes. Then he continued, "I didn't know he could put puzzles together. I've seen him rip them apart and throw the pieces at people lots of times, but I've never actually seen him put them together."
Cale looked at him and quietly clicked another piece into place.
"Huh..." the O.T. continued, watching Cale very suspiciously.
"Okay OKAY!!" I finally confessed, "I got desperate! I wouldn't have done it but he's driving me crazy! We chased him around the house for THREE HOURS before you came! And...and...well...I gave him three teaspoons of coffee twenty minutes before you got here."
The O.T. immediately looked at Cale with big eyes. And Cale looked back at him, right in the eyes, just before he clicked another piece into place. Then, very slowly, a smile spread over the O.T.'s face.
"He could just be tired," I said, "He did run circles for three hours straight."
"He doesn't look tired to me," the O.T. said, "He's making small, controlled movements with his hands. He's holding still, listening, making eye contact, and focusing on his activity, none of which he'd be able to do this well if he was tired."
I haven't had the guts, with all that is going on with Cale medically, to give him coffee every day. I did, however, give it to him before ABA therapy yesterday during which he didn't cry one time. He also said about fifteen new words. Let me say it again in case you missed that - FIFTEEN NEW WORDS!!!
I can finally see all these giant puzzle pieces in Cale's life - treatment for the Autism (which for Cale is a gluten/casein free diet, ABA therapy, other therapies, and cod-liver oil). And these treatments, now that they're all happening simultaneously, seem to be causing all these sudden connections in Cale's brain that he doesn't yet know what to do with. But his therapists and I can help him with that.
Then there will be treatment for his medical problems. And now there's a potential solution for the ADHD too, although I'd rather have the psychiatrist medicate him instead of me. She will though. Eventually. Especially after I tell her I'll be doing it myself with espresso until she gives him something more appropriate. All these things that have previously looked like one and only, impenetrable parts of dealing with Cale that we'd have to learn to live with, are now starting to look like puzzle pieces that will hopefully all come together soon to help him make some real progress.
I don't actually allow myself to expect Cale to ever be different than he is right at this moment. I fully expect a non-verbal forty year old floating on his back in the courtyard pool, staring at the leaves in the trees above him. But I do need to be able to look out that window while I drink my coffee and watch him and know that I did absolutely everything I could to help him be his best him, for whatever that turns out to be. And you know why? Because getting him to be a certain way is not what this is all about. He's perfect already. Getting me to be the best me is what this is all about. And that means I really can't call my book FUUUCK. Damn it.
