How often is it that your child teaches you how to embrace the unknown with grace and strength?
Recently I shared with you (see article) that I chose to remove my 11 yr old Aidan from school because of unexplained behavior that was getting him in trouble in class.
With the help of Aidan’s pediatrician we were able to get an appointment to see a neurologist within a week. Prior to our appointment Aidan would need to receive a sleep-deprived EEG. So we prepared ourselves to stay up the night before.
I fretted over how we’d keep ourselves occupied and how I’d be alert enough to drive the hour it would take to get us there after being awake all night. I was fully prepared to be Aidan’s rock, his support, his motivator and source of security. As it turns out, he did it for me.
As Sunday night approached Aidan had plans of popcorn, video games and movie watching for us. I owe a lot to my wife Cathy for staying up with Aidan until Midnight so I could rest and take the edge off my already very tired mind.
I then took over with Aidan who was fully engrossed in video game play. This gave me a chance to move around and wake up a little.
Not long after we were eating popcorn and laughing together as we watched movies and talked about how we looked forward to answers later in the day. Aidan was so wide awake I was able to sneak in one more 45 minute power nap before it was time to go. He even decided to eat breakfast and brush his teeth before I woke up.
One of the critical aspects of how I support my sons is in the area of self-advocacy. Since they began talking they learned that they’d be doing as much of the talking on their own behalf as possible. As shy as they were and as much as they wanted to hide behind me and ask me to talk on their behalf, I reinforced with them that I respected and loved them too much to deny them the right for their voice to be heard.
This day that lesson served Aidan well. As we were greeted by the tech who’d be performing Aidan’s EEG he examined the gurney he’d be laying on and immediately requested a pillow and warm blanket so he could be more comfortable. Fortunately those two items were already prepared for him to enjoy right after the electrodes were secure.
Aidan’s mother Katie and I waited in the lobby for Aidan’s test to be completed. It wasn’t long before he walked out with a big smile on his face and creatively styled hair (compliments of the goop used to secure the electrodes).
Soon after we were in the neurologist’s office who conveniently had a Wii in the waiting room that Aidan promptly commandeered while I filled out paperwork. More children began arriving for their appointments and Katie noticed another boy watching Aidan’s play with interest. She cued him that perhaps the other boy would like to play as well. Aidan then invited the boy to sit next to him and even offered a tutorial on how the game was played.
The time for answers arrived. The Dr walked in and shook each of our hands. He was very friendly, down to earth and Aidan was immediately comfortable talking with him. He explained that the EEG appeared normal and that all of the vocalizations Aidan had been expressing in class were actually an exacerbation of various vocalizations and full body jerks we’d been observing at home.
The Dr informed us that in addition to Asperger’s and ADHD that Aidan also has Tourette’s Syndrome. My brain began racing with all the research I’d begin doing the moment I arrived home. I asked what the next steps would be and the Dr began discussing a medication that he would recommend for Aidan.
It was at that moment that Aidan asked the question, “Are there any side effects?” The Dr was very succinct in what they were and that they’d likely fade as Aidan became used to them.
Aidan expressed concern about all the labels that were being thrown around to describe him and the Dr beautifully informed Aidan that those words simply helped us describe parts of him but by no means all of him – a man after my own heart.
As we finished our appointment Aidan hugged Katie goodbye and we walked to my car as we discussed where we’d like to begin our research on Tourette’s. It was only a few minutes into our car ride home that Aidan passed out and slept soundly for most of the ride home.
Cathy was waiting for us at home and was eager to hear all about our adventure. As she asked Aidan to share his experiences he looked at her and very diplomatically said, “That will have to wait because I’m so tired I feel like I’m going to throw up.”
Aidan rested and Cathy and I discussed how we’d begin to educate ourselves on the newest square of the quilt that is our Aidan.
Yesterday Aidan and I decided to go to our local library to find books on Tourette’s. I encouraged him to prepare to ask the clerk for what he needed. He held the door open for me (for which I thanked him), he then approached the clerk and said, “Do you have books on Tourette’s – because I have some and want to learn more about it?”
The clerks were taken aback by how direct Aidan was but once they took in his request they told him how brave they thought he was for taking such initiative to learn more about himself.
Though we couldn’t find a book for kids his age at the library this experience proved something very important for me as a nervous father. It proved that this wasn’t going to stop Aidan. He seemed to be treating this as another episode in the adventure that is his life.
Sure it isn’t all butterflies and fairies, we’ve shared tears together as he describes how hard his life is sometimes. But he always manages to bounce back.
Aidan’s curiosity and adventurous spirit helped allay so much of my anxiety.
So what’s next for Aidan, it would seem that whatever life has to throw at him. He is one of the most resilient people I’ve ever met and a model of the power of curiosity in the face of uncertainty. Thanks for being my son Aidan; you help make me a better person and a better father.
Thanks for being you.
Please share a memory of how your child has inspired you . . .
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