“Hope is a waking dram” ~ Aristotle
Tears welled up in my eyes as I sat down to talk to Renee about Stone in early October. “I think he’s regressing,” I told her. We had noticed a decrease in his use of speech as well as new unexplained behavior – spitting – at school and therapy. I knew from others in the community that it’s not uncommon for a child on the Autism spectrum to sometimes plateau – but anytime you feel like your child is regressing, it’s unnerving and you want to act.
When Stone entered first grade, we decided to put all of his therapies temporarily on
hold. School would now occupy Stone’s time from roughly 9-4 daily and we knew this would be a big change and transition for him so thought that trying to squeeze in an hour of speech therapy, occupational therapy and ABA (each) would be too much for him initially. So he essentially went 7 weeks without any outside therapy while learning to adapt to a new school, teacher and environment. In addition, we had not been giving Stone the full set of supplements recommended by our ND. We’ve found the only way we can get him to take the supplements (which includes lots of powders) is to mix it with vanilla frosting. It makes it more palpable, but clearly it doesn’t taste good and Stone isn’t shy about letting us know his displeasure in the exercise. So we yielded and focused on giving him doses in evenings only.
But I was scared that Stone was slipping backwards too much so I approached Renee to share my concerns and offer some ideas. First, I thought that we needed to get him back into outside therapy as soon as possible. Renee agreed that it would be helpful to get him back into speech therapy so we found time with his old speech therapist on Fridays at 4 pm (more on this in a bit). We had also been exploring Lakeside Center for Autism and I was impressed with their integrative approach to therapy. Even though the Issaquah center is a healthy drive from our Edmonds home, I felt it was worth the effort to get Stone into their therapy programs. Renee and I were both a bit concerned about having Stone miss class time, but we agreed that if we could schedule Stone’s appointments mid-day on one day, it would be least disruptive and was worth exploring. Finally, I decided that I needed to suck it up and make sure that Stone received ALL of his supplements each and every day – even though I knew he didn’t like it and it might be difficult each morning before school.
After a few weeks of trying the last Friday afternoon appointment with Stone’s long-time speech therapist, we realized that this slot just wasn’t going to be very effective for Stone. It was the end of a very long week and his motivation was understandably low. This only intensified our desire to start with speech therapy and OT at Lakeside as soon as they could find a slot that worked with our desired schedule. Fortunately the wait was short (one week) and we were able to get Stone scheduled from 1-3 on Tuesdays. This was ideal as it allows Stone to be picked up at Noon, eat his lunch during the drive to Issaquah, do two hours of therapy and then return in time to pick up Ty at the end of his school day (at 4 pm). I went with Stone during his first couple of visits to Lakeside and he loved the experience – and I came away even more impressed (and confident) than before. Because Lakeside is designed as an integrated therapy center, they are used to kids like Stone who have multiple appointments in one day so they even have transition rooms and care-takers available to help when kids move from one therapist to the next.
In the meantime, I bit the bullet and started to carefully follow the ND’s protocol for Stone with his supplements. He wasn’t happy about me giving him the frosting again in the morning but being the trooper that he is, he went along with it.
It’s not an exaggeration that within two weeks of this new therapy (and increased supplements), we noticed Stone using new words again and acting in ways we hadn’t seen before. And not only were we noticing, but we were receiving positive reports from his wonderful teacher at school too. We were collectively thrilled.
Fast-forward to December and this month has been full of major developmental breakthroughs for Stone. We received updates such as the following from his teacher:
David and Renee,
I’d like to share with you some cool stuff that we have been seeing with Stone this past week:
He passed his receptive identification of pre-primer words. This is when I put three cards out, and ask him to hand me a specific word. He knows all 40 pre-primer words! We will being instruction on primer words today.
We are working hard on giving Stone lots of opportunities to communicate. We do this by not responding to gestures or “Mehing”. This forces Stone to find another way to get what he wants. Examples:
He wanted me to help him engage the zipper on his coat. I told him I was sorry, I didn’t understand what he wanted (though it was quite obvious, of course). He then said, “Help me zipper!”
Near the end of the day, Stone starts checking the schedule, in anticipation of going home. He did not like that I don’t consistently set the Time Timer clock, and was pointing at it. I asked what was wrong, and he asked, “Red up?” (The language I use with the class is that “I’m going to put the red up,” and then they tell me when “the red is all gone”.)
There was a minute timer (the sand through the hourglass kind) on a shelf, out of reach. He kept pointing at it, and I told him I did not understand. As Stone did not know the word for timer, he finally yelled in frustration, “Right there!”
We are really excited about his emerging speech. What are you seeing at home?
Well, not only have we been seeing all kinds of signs of his emerging speech, we also witnessed other major milestones that I wasn’t sure would be possible so quickly. Purely on accident we discovered that Stone was now capable of going to bed and sleeping through the night in his underwear – no more pull ups needed! He went nearly a week without pull-ups before having his first accident, and he still periodically has them, but all in all he has done amazingly well in this department. We’ve learned to limit the beverages at night and to make sure he goes to the bathroom before going to bed and we think this helps.
The most exciting development (for me) came just this past weekend when Stone rode a bicycle for the first time. This is literally a day I’ve been dreaming about for years. We knew he had an interest in bikes as he started climbing onto Ty’s old bike and walking around with it in the garage. We bought new training wheels for the bike and tried to encourage him to ride it during the summer, but it wasn’t much use. So imagine my surprise when I returned home from a run and found him on the street pedaling and riding the bike – with Renee next to him helping him steer and encouraging him along. It was an amazing, beautiful site and tears again welled up in my eyes.
Yesterday I took the twins to their favorite park and for the first time I was able to bring both of their bikes. It was a profoundly different – and rewarding – experience having Stone say “bicycle” and then walk with him and help as he pedaled and navigated around the 1/3 mile loop that circles the park.
Stone’s teacher told Renee and I in a private conference two weeks ago that she has never had a student like Stone before. Typically, she said, she can see developmental issues or disabilities that will potentially impact a young student as they grow older. But with Stone she said for the first time she’s treating him with the expectation that he will have NO limitations as an adult. And while this is something I know that Renee and I have always believed, it’s incredibly uplifting and motivating to hear this from an experienced educator.
I know we have a long road to travel still with Stone but that path now seems much more manageable – especially when I look back and see the incredible progress he’s already made.
There is definitely hope. Lots of hope.