I love Beckett’s interest in music.
When he heard word this week of Tom Petty’s unexpected passing, he, being 9 years old, immediately made it all about him.
His quote was something along the lines of “there’s another of my favorite musicians you got to see in concert without me.” Pam and I were fortunate enough to see Petty three times in the last five years – Philadelphia, Firefly in Dover and Baltimore this past summer.
I was curious what musicians Beckett was referring to and, as is usually the case, he answered me before I even had to ask, rattling off Michael Jackson, Pink Floyd, Rolling Stones, Elvis Presley, Maroon 5, Andy Grammer, Gavin DeGraw, Billy Joel, Pearl Jam, The Killers and Bruno Mars. There were some more mixed in there but I couldn’t keep track of all the bands he rattled off.
When I turned to correct him that it was his mom who saw Elvis in concert, he was out the door to play in the backyard. He wasn’t too upset evidently.
For the first time in his life, we are seeing serious improvements for Carson on the speech front.
Carson began receiving speech therapy services when he was 18 months old. He’s now almost 8 years old and has speech therapy five days a week through school and a private therapist.
Over the summer, we feel he had his first breakthrough thanks in large part to Sommer from Salisbury Speech Therapy. This is not to take anything away from his other speech therapists over the years, but Sommer is able to get Carson to work on another level.
Timing in life is everything. We came to start working with Sommer through the school system, which provided Extended School Year services to Carson because we felt, and his IEP team agreed, that he would regress without continued speech therapy services through the county during the summer months.
Over the summer, Carson started making new sounds we had never heard before. His sounds at this point consisted of “ahhh” (which has come to be known as yes for him) and “mama” (his favorite person in his life).
The advent of these new sounds made each speech session an emotional one. I personally was starting to wonder whether he would ever talk. I still have serious concerns there, but for the first time I’m hopeful he will be able to speak one day. I don’t assume it but there’s reason to think it will eventually happen now. It’s just going to be a long-term journey.
When summer ended, we decided we had to keep working with Sommer whether it was covered by insurance or not. So he now receives speech two times a week after school with Sommer and three times a week with Carol, his wonderful speech therapist at school. Now for the first time both his speech therapists are on the same page and working on the same short-term goals of demonstrating speech motor control through articulation. That’s a huge change.
While each session is unique with different levels of success, there are breakthroughs every day. He seems more cognitively aware and able to respond to what’s being asked of him. Words he is now articulating – not perfectly and in a low tone – include mop, ham, bam, Pam, pop, map, pup, hip and bop.
He traces a finger along each letter and makes the sound well. Combing the consonant-vowel-consonant letters into sounding like a word is a struggle for him but he’s getting there and improving each day. Any sort of progress is the goal here and that’s happening.
Patience and commitment will be huge for us as his parents. One thing I know about Pam and I is we are committed to getting him the services he deserves and needs. Patience is a day-to-day thing, but generally I think we are able to temper expectations with the reality of the daunting journey before us. It’s going to be a long-term struggle for him but with consistent speech therapy with the right people on the same page he will continue to make gains.
In the meantime, he uses his Dynavox device to express himself in school and at home. He is a wiz with it now, but I admit I look forward to the day it’s no longer a part of our daily lives. That’s years away but it’s exciting to think about these days.
Some parents ruin youth sports.
During a closely contested club soccer game last weekend, it was remarkable to watch as certain parents from the opposing team argued call after call with the referee. When they weren’t yelling at the ref, they were criticizing their own players and questioning everything else. It was an embarrassment and one of the reasons I prefer to watch the game far away from parents.
When I asked Beckett if he and his teammates could hear the havoc the parents were creating during the game, he said of course and remarked the entire complex could. When I asked him what he thought, he said he thought it was funny.
That was a great response.
