Wow, it’s been so long since I’ve written anything over 140 characters (in other words, Twitter or FB). I was beginning to feel as if I had fallen off the face of the Earth… or as if I would never have the itch to sit down and write. But, I see now that I had just tamped down the urge so I could focus on Charlie.
His downward spiral started slow and then escalated to a point where I was considering pulling him from school to homeschool him. His behavior was off the charts and he was a very unhappy boy; but, I would have been too if I had felt as crappy as he did during that time.
Thankfully, we were able to figure out what was going on (one of the GI meds he takes was actually damaging his mucosa and causing nausea, pain and migraines). Once Dr. K was able to pin down the culprit, he was able to prescribe an additional medication that not only heals the damage, but will also protect the lining from further damage (which means Charlie can go back on the medication that started all the trouble). Admittedly, I was not thrilled to learn that Dr. K was putting Charlie back on the medication; but, I trust the man, so we gave it a go. The past few months have been all about repairing and then prepping the gut for restarting of the medication. I am happy to report Charlie is now up to the full dose again, with no troubles of which to speak.
As I mentioned, during this difficult time school had been a real struggle for Charlie. Transitions, sensory issues, behavioral problems left and right - it was just a really, really bad situation. This is evident when one looks at the teacher’s daily behavior chart. Charlie had a situation every day - yelling, screaming, running out of the class, escaping the school. This means his behavior chart was lacking “E’s” (excellent) and looked more like Dr. Jekyll and Mr. Hyde were in his seat each day. Thankfully, everyone at Charlie’s school is very understanding, and most every staff member made it his/her business to keep an eye on our little Houdini. They kept a good attitude, while at the same time taking the safety issues very seriously.
I guess it was about two weeks ago when I started noticing a change in Charlie - fewer outbursts, no more nausea, lessening of the intensity of his migraines, his teacher and the school staff being happy with him. As the days passed family members and friends commented on the changes as well. There was a definite increase in language, eye contact, and cognitive abilities. But mostly it was behavior - Charlie was acting like a typical 7 year old.
Almost three weeks ago, Ang Warner’s son Nathan lost his autism diagnosis (I wrote about it HERE ). It was a big day because a member of our autism family had successfully left the nest. I still get chills when I think about it - all the little birdies starting to flap their wings, growing stronger every day, until the day they spread their wings and off they’ll go - soaring.
When I told Charlie about Nathan losing his diagnosis, he immediately started asking questions - you know, like… “Can he eat junk food now?” and “So… no more meds?” and “He’s never gonna go back in autism, right?” and “Do you think I can be out of autism too?” The next thing Charlie did was get on the computer and create a custom “congrats” card for Nathan.
He knew Nathan loved Lego Star Wars, so he set out to make the ultimate “Lego Star Wars meets autism” card anyone has ever seen - CLICK HERE TO SEE IT FOR YOURSELF (I helped with the autism/Darth Vader part, otherwise the card is a Charlie original). The card was printed and mailed out shortly there after.
This evening we were thrilled to hear from Ang that the card had arrived and Nathan loved it. Ang asked if Charlie would talk to Nathan on the phone. I told her we could try, but that she should be prepared for Charlie to refuse as he doesn’t like talking on the phone… at all.
I walked up to Charlie and said, “Hey buddy, remember the cool card you made and sent to Nathan?” Charlie said, “Yep.” I said, “Nathan wants to talk to you on the phone about it…. what do you think, wanna talk?” Charlie grinned from ear to ear and yelled, “Yeah!”
He grabbed the phone and said, “Hello?” I heard Angela say, “Hi Charlie!” Charlie said, “Hi Angela.” Ang then said, “How are you doing?” Charlie said, “I’m good…. where is Nathan?” Poor Ang, dissed by a 7 year old! Ang put Nathan on the phone and Charlie’s eyes and face lit up like you would not believe. I got choked up - at that moment he was the very picture of pure happiness.
Nathan asked Charlie if he had any Lego Star Wars sets. Charlie told him he didn’t, but that he had Spongebob (side note: the boy has millions of Legos - he’s just obsessed with the Build-a-Bob thing right now because you can see inside Spongebob’s brain or something). Nathan told Charlie he would send him a Lego Star Wars guy. Charlie said, “You mean you’re gonna send it to me?… To Charlie?” Nathan said, “Yeah!” Charlie said, “Whoa!” They said a few more things and then Charlie said, “Well, I’m going to let my mom talk to Angela now.”
Ang and I were beside ourselves with the utter cuteness of our boys and the fact that Charlie was so chatty. I hung up the phone and just took in the moment and all that lead to it: 3 solid weeks of all E’s on his behavior chart at school; his increased empathy and pride in others; his new found interest in forming friendships and interacting with others; his talking on the phone - these are all signs that things are changing for the better for Charlie (after several horrific regressions). They are signs that his little wings are getting stronger, and I know soon he too will finally leave the autism nest for good and soar.
I know this sounds cheesy; but I’m going to say it anyway: The gift of strength and wellness given to my son by the DAN! protocol, and the brilliant Drs. Davis and Krigsman, will be the wind beneath his wings and will carry him as far as he wants to go… which knowing Charlie will be straight to Denmark and Legoland!