I love your brain

Music defines nearly every memory I can conjure. I’ve always loved it and have always been exposed to it. Even early childhood memories are informed by a song or specific music. Driving in the car with my dad singing Gordon Lightfoot’s Sundown, while I sat in the backseat belting it out along with him, albeit very poorly (my family is not known for our songbird qualities…We all love to sing but are all terrible!). Creating dances to Helen Redy’s Big Old Ruby Red Dress and Boz Skaggs Lido Shuffle so I could entertain my parent’s friends during dinner parties (my clever idea, not theirs!). Sitting in a box at the Hollywood Bowl with my parents listening to Miles Davis under the stars, dangling my feet over the edge of the bench desperate to twirl…

So many songs bring me right back to a specific time and place in my life to the point where I can almost feel the moment again. On a basic level, music informs my moods. Perfect driving music can make the long drive to or from work almost enjoyable. Nothing blows a bad day out of my thoughts like loud, old school punk rock…

I struggle with Cole to find music that pleases him. I often wonder if music has the same influence on his life as it does mine. It’s not a conversation we can easily have with or without his voice output device. It’s a more nuanced conversation than we can manage right now which makes me kind of sad. I would love to know if certain songs get stuck in his head, for better or worse, where they’re running on a loop in his head all day. This happens to me all the time.

In my continued effort to find music to soothe (or stimulate) his soul, the following songs are new to the rotation:

1. George Ezra – Budapest (my new happy song)
2. Linda Van Dijck – Stengun
3. Duncan Sheik – Barely Breathing
4. Shine – Simple Song
5. Belly – Feed The Tree (he liked)
6. Collective Soul – Gel
7. Magic Man – Paris
8. Peter Bjorn & John – Young Folks
9. Serena Ryder – Stomp
10. Spoon – Do You (we both love)

I’m open to recommendations for new (or old) music to try!

Having a non-verbal child is a challenge. Especially when they start to lead more independent lives. We rely on word of mouth to piece together his experiences away from us. We rely on our ability to ask the right questions and trust that we’re receiving truthful and factual answers from both Cole and those who are with him. We also have to accept that there is some much we’ll never know about his experiences, his days, or his life away from us. Which if you’re me is no easy feat.

We receive daily notes about his school day. It’s supposed to detail what he’s studying and doing in each class as well as any notable things that happen each day. There’s also space to note which friends he hung out with at lunch, nutrition or in class. The notes are often pretty bleak so we try to fill in the blanks by asking a tired, uninterested child countless questions which largely go unanswered. Occasionally we get a smile here or there, probably remembering something funny he and a friend chatted about or did but not wholly valuable to those who are not in the know.

I am blessed to have some mom friends who have children in his class who share need to know information, but this only goes so far. There’s so much of his school life that remains unknown. I wish I could live in his head to experience life from his perspective and to peek into his thoughts.   Just for a day. Oh, the insight I could gain.

Much of his free time is spent with one or both parents so we have a beat on what’s happening with him during the weeknights and weekends. However, my curiosity roams to the internal thoughts. Not having the ability to have rambling random conversations leaves so much about him a mystery. What does he think about when he’s just relaxing and chilling in the evening? What’s going through his head when he shares a big family dinner with my brother and his family and my mom? What does he really think of my dancing – I know what he thinks of my singing…he’s communicated his distaste for my singing very ably! (I admit, I cannot sing…it doesn’t stop me but alas…I song bird I am not).

Even with the use of his Tobii, a voice output device he manipulates via eye gaze, much of his conversation currently is limited to answering or asking questions not to chatting. Not yet anyway.

Cole’s officially a teenager and I’m not sure exactly what that looks like for him. As exciting as it is and as much as I look forward to all of the teenage angst, it also has me concerned about the changes that come with being a teenager.

I’m afraid that it’s the beginning of a transition that may leave him feeling a bit alienated. I hope I’m wrong…or at least that the teens move slower than I did. In most ways his development is pretty typical, despite the restrictions his body presents him. In other ways, he’s a bit less mature than some, a bit more so than others. Kind of middle of the road on that front! I see his interest in girls starting to pique, and I see his friends on the ebb of their own curiosity about boys and girls.

My concern is that as his friends and peers become more independent, adventurous, and even passionate, he’s going be left behind. He’s got wonderful friends, mostly girls, but some boys. He is adored, but as young romances bud, and independent events become the norm (movies, parties, dinners sans parents), he’s going to be in need of some assistance, and it’s not something that we can rely on friends to be responsible for, but also not times that a parent would be welcome. And how does it work if he wants to date?

Do you find a youthful caregiver who can just sort be there but blend into the scenery? Do you find a willing friend who is trusted and capable? This all falls into the category of things most parents don’t have to think about, and that no one ever tells you might be important…