Recently, I spent the day with my darling Caleb and after I returned him to his group home, I realized how exceedingly long it has been since I’ve posted. Please forgive me, dear reader, and let me catch you up.
For anyone debating group home placement, allow me to share the wonderful aspect of such a move. Not all placements are good, just as all relationships or jobs or other situations are not good. There is still much effort and constant attention and communication. Oh, but it’s so worth it, mostly for the special needs adult.
In two and a half years, Caleb has gained independence, as any 25-year-old should. He can advocate for himself, communicating his needs and wants. Without me to type words into his tablet, he has learned to read so he can go to YouTube and play his favorite music, movies and TV shows.
Along with necessary structure, Caleb has three roommates with whom he eats meals, goes on outings, watches movies and sports. The staff are particularly kind and involved and he knows their schedules. He attends a day program and has developed close relationships with several other attendees. It’s a marvel to me, as I always dreaded, in the dark, hidden corner of my mind that he would live his life deprived of such wonders.
A few weeks ago, someone suggested that Caleb be evaluated at a tutoring center. One of their treatments involves playing classical music to help align his brain, citing a recent student who went on to thrive in math and was promoted to goalie on his soccer team. Despite not knowing Caleb, they were urging me to pursue this evaluation.
I took a breath, learning as I have over two decades, to remember that this suggestion was likely coming from a place of concern and hope. I told them that Caleb and I have put in thousands of hours of speech, occupational, physical, and equine therapies. In concert with the world’s best teachers and tweaked programs, Caleb has ascended to his highest functional level, and he continues to learn.
While informing this individual that this soccer goalie and my Caleb didn’t exist in the same realm, I allowed myself to reflect on how delightfully the world has evolved since Caleb’s birth.
Twenty-five years ago, autism was a scary, whispered word. It’s still not likely a diagnosis that anyone would dream about for their child, but the diagnosis is burgeoning into something more recognized and accepted.
At breakfast that day, without any prompting, the lovely server asked me if the plastic glass was okay for him, or if he would prefer a to-go cup. Her warm smile and kind glance was and would have been precious water to me in the very scary desert of Caleb’s diagnosis when he was two years old.
We all know this acceptance is not global. Caleb, my daughter and son-in-law, my husband and I have endured too many instances of ignorance, cruelty, and debased rudeness. Those instances don’t deserve any mention here. They haven’t earned a place in any of our memories so I’m leaving them in the trash bin in my mind, rather than bringing them out for recycling now. There is nothing redeeming in reliving such pain.
Back to the sparkling bubbles of acceptance, our day involved a routine doctor visit. We have had wonderful doctors, but now there is an inherent, complete recognition of Caleb and his personality. Isn’t that what all of us Neverland parents crave? Don’t we want the world to see our marvelous children for who they are?
Even if you are not here yet, or you are weary from assaults from the unkind, know that there is the possibility of finding this gem glittering in what can feel like a barren desert.
Afterwards, in the car, Caleb picked up my phone as always, because he chooses all the music. He immediately began playing The Moldau written by Czech composer Smetana in 1874. This song tells instrumentally of the Moldau River as it journeys from inception in Bohemia, as two streams powerfully connect, merging with other bodies of water until it lands in Prague.
The Moldeau has played in our home for decades. Caleb is also partial to Vivaldi and the various works of Yo-Yo Ma. Sophie has deciphered that he particularly enjoys music in the key of G.
So, when this well-meaning person posited that Caleb should attend a center to listen to classical music, I smiled and thanked them for the suggestion.
But here is the tiny nugget that would have been missed if I were not sitting next to Caleb. As the car filled with music, he pinched the bridge of his nose, his effort to hold back tears, and whispered my dear father’s name. We lost this inimitable man two years ago and are still in the throes of grief. This great, good man is the reason we know this particular song. He played this and many other classical collections as I grew up and then he and I did the same for both Caleb and Sophie.
As always with Caleb, it was a quiet moment. He communicated all he needed to with one word and one gesture. I looked at him and said, “Honey, I miss him too.” He nodded, looked out the window and relaxed into the song. We both smiled, remembering my father as he mock-conducted the stereo in the family room, calling attention to each note, telling us where the stream picked up other waters, wearing a beatific smile of prodigious content. What joy to remember such a happy time instead of only mourning his loss.
You don’t need to force classical music or any other trope on any child. Just like with the soccer goalie, this worked for us but may not be for everyone. Look for the connections. Look for children who associate colors with emotions, or whom you find stimming in certain situations and try to see the cause. You may need to part the forest a bit to find your particular tree, but it’s there.
Your tiny stream will find its own path and journey to its own place in this very large world.
Our kids have extraordinary intelligence that presents in its own way, but I promise you it is there and you will find it.
Be well, dear reader, until next time.
Neverland Without a GPS 