Wednesday, March 31, 2010

Is the universe trying to tell me something?

Two weeks ago I wrote about how Ben had deleted the Proloquo communication app off his iPod. We didn't have a recent backup, so I spent hours recustomizing it – deleting unnecessary vocab, moving categories around to make it easier to navigate, creating new folders and words, syncing new photos so that Ben's favourite Star Wars area grew to epic proportions.

We had just started to use the characters in those photos as a basis for writing simple sentences. Ponda Babba's face looked like a spider and Greedo looked like a giraffe because he had the same little horns on his head.

So last night I was looking forward to Ben choosing another figure that we could write about. Instead, he brought me the iPod to show me that he had deleted the Proloquo – AGAIN!

I kept opening and closing my eyes, unable to fathom that the kid had done it again. I was furious – knowing I'd have to start back at square one reprogramming the device – and I also felt stupid. Why did I assume he wouldn't delete the software again? My kid is impulsive and the process is simple: You hold down the owl icon on the app page until it shakes, a box asks you if you want to delete, and you click it.

As I contemplated the task of ONCE AGAIN redoing the hours of work I'd spent over the last couple of weeks, I couldn't help thinking about the time I've spent trying to help Ben communicate over the years.

There were eight years of speech therapy, which sometimes saw him going four times a week. Multiple times we drove the 10 hour trip from Toronto to New York – Ben's toddler sister in tow – so he could be seen by specialists using approaches not available locally. Sometimes we'd drive the 10 hours one day, have the consult the next, then hop back in the car for 10 hours back. We were on a mission, and if it was going to help Ben speak, we would have driven to the moon.

I spent exorbitant amounts of money on speech kits. There was Easy Does it for Apraxia and the Kaufman Speech Praxis Treatment Kit, by Nancy Kaufman. We took Ben to see Nancy twice in Michigan. We also saw Sarah Johnson – who developed the oral-motor approach to therapy – and a few of her staff who lived in various parts of New York State. I bought enough oral-motor horns, straws, bubbles, tongue depressors and toothetes to equip a clinic and did the exercises religiously. We visited Dr. Shprintzen in Syracuse, an expert in surgery to close a floppy velopharyngeal flap, one of several structural problems Ben had, and a team of specialists at the NYU Medical Center.

Early on, we put picture symbols everywhere. When we began sign language, I remember cutting out hundreds of picture symbols with signs, taking them to Grand and Toy to get them laminated, then cutting the laminated ones out again. There was sign-language immersion camp and a dynamyte voice device – which I first acquired as a loan from the distributor because our therapist wasn't willing to authorize it. That changed when we videotaped Ben using it and were able to prove he was capable. However, the dynamyte was heavy and couldn't travel with Ben – who was mobile but tiny and weak. The technology was archaic and it took so long to move through the deeply embedded pages of vocabulary that it was easier not to use it. But still, I spent hours and hours programming it.

The AAC therapists didn't believe in sign language and advised strongly against it. A developmental pediatrician convinced us it would be useful for Ben, and it was. But he was still limited by his weak, uncoordinated hands and according to one psychologist wasn't smart enough to become more fluent.

When he was a baby, he babbled exuberantly and we always thought he would speak early. He had many word attempts in his first year. “Bo” was bottle and “'Ben go bo” meant “Ben go bottle.” His beloved red Sesame Street character was pronounced "Elma.” A speech therapist noted that he referred to his favourite furry creature – “owl” – “very clearly,” and an assessment at age two said he was at an 18-month speech level. But once the severe, recurrent ear-infections started – and with his hearing loss still misdiagnosed, despite frequent hearing tests – he lost it. I used to go back and look at the lists of words he'd said, unable to grasp why they had vanished.

When Ben was about four, it hit me hard that he might never speak. I went back to church and I asked the congregation to pray for Ben, who we were taking to Michigan to see Nancy Kaufman. An old man turned to me and said: "Maybe God doesn't want him to speak. Have you ever considered that?”

The message that Ben wasn’t destined to speak came again at age seven when we were doing a second week of intensive, twice-daily therapy with the Michigan therapist. “I don't think Ben is ever going to speak,” she said during a morning session. “I don't think he'll ever get past word attempts that you understand but that others don't. I think his brain is wired differently.”

I went back to the hotel room and I got under the covers and I wanted to die. But I couldn't, because we had another therapy session scheduled for that afternoon and I had to keep Ben motivated and up. I didn’t have time for grief, because every second of the day was a therapeutic opportunity we couldn’t afford to miss; the window for intervention was beginning to close.

I didn’t listen to the man who suggested God didn't want my son to speak, and I didn’t listen to this speech therapist.

Last night, when I realized Ben had deleted the Proloquo a second time, I wondered: Is the universe sending me the same message?

Maybe Ben deleted the software because he doesn’t want to use it, plain and simple. While it’s freeing for him, it’s also challenging.

"Ben, I've spent hours fixing this machine for you,” I said. “I did it because I thought you wanted to use the iPod to communicate!”

"Eh!" (Yes!) he said vigorously, nodding his head.

Sometimes I wonder if there is some larger message at play. Sometimes I can't help imagining a higher being watching my never-ending attempts to help Ben communicate, and shaking his/her head and laughing: "She just doesn't get it, does she?"

But I can't stop. I don’t have a choice. I have to get the software reloaded at Bloorview today, and I have to start recustomizing again. Because it's Ben's only opportunity to increase his communication – whether he's capable of using it as adeptly as I'd hope and whether he wants to use it – or not.

Later last night Ben tottered like an old man down the hall, almost upended by the giant Pixar movie encyclopedia he was carrying. A bony growth inside his hip is pushing it out of its socket and causing him to limp. He’ll be having major surgery in two weeks to remove it.

If only life was a Pixar movie, where friendship saves the day, being different is okay and the good guys eventually win out.

“I’m sorry,” Ben signed, and then he signed that he wants me to be happy again. He hugged me.

I don't have a choice on that either.


This post was gripping and poignant. (If that was redundant, well, just accept a double compliment.)

Not long ago I was asked how I respond to parents who want to use techniques I don't ascribe to. I firmly believe that parents have to do what they choose and/or are driven to do, responding to inner callings or outer messages.

Because that other person is their child, not a choice.

Louise, Thanks so much for sharing so honestly. What a beautiful tribute to you and to Ben, in both your weaknesses and your strengths.
Amy Julia

This post brings me to tears, Louise. You've provided such a great window into life with a kid with special needs and the extraordinary efforts required...all the time, for years on end. Thanks for sharing this.

Good luck with the reprogramming!

Thanks everyone! Just to clarify (because I should have mentioned) -- the reason I didn't have a recent backup was that we thought it required Wifi to back it up to a computer, and I didn't have that at home. So I was always weighing whether I wanted to take it away from Ben during the day to back it up at Bloorview, or keep it for another day and hope he didn't delete it. We've now figured out a way I can back it up at home. But I still have to reprogram!

Thanks Mary -- I know you understand. Amy Baskin just described to me what she called "reverse parenting" -- the concept that when other kids are leaving the nest and starting lives of their own, for some of our kids, we're back at square one -- having them at home all day and having to create a meaningful life on our own. Wouldn't it be wonderful if we each had a "coach" who could help us navigate this marathon!?

"Not long ago I was asked how I respond to parents who want to use techniques I don't ascribe to. I firmly believe that parents have to do what they choose and/or are driven to do, responding to inner callings or outer messages.

Because that other person is their child, not a choice."

Exactly. This I believe.

Sometimes, I wonder over what is driving me to want more, demand more, do more and be more. These are things I ask of myself because I want to leave this earth knowing that I did the best I could...even if I don't even know what "the best" really means. Does this make sense?

I agree wholeheartedly with Mary. You've done SO much -- for your family, and for us, too.

You know what is most precious about your post? Ben's compassion and intuition. I think our children want the best for us too.