Mama and Dad

"When Carl Met George" is a new storyline in the PBS television show Arthur that features Carl, above left, a new friend of George's who has Asperger syndrome. The first episode aired April 5. Did anyone see it? Tell us what you thought!

Tying Your Own Shoes is a beautiful, animated documentary about the lives of four adult artists who have Down syndrome. This Canadian film "combines self-portraits with first-person narratives to challenge widely-held stereotypes." Read more or purchase it at the link. My wonderful friend Madeleine shared it with me.

Six men and women speak about living with an autism-spectrum disorder in this New York Times Patient Voices series.

A new study of people with facial paralysis related to Moebius syndrome finds that people with the disorder had no trouble at all recognizing others’ expressions. Lead researcher Kathleen Bogart, who has the syndrome, talks about the study in: Seeking Emotional Clues without Facial Cues.

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.

My son turned 16 on Friday.

His party was at ChuckECheese. An odd location for a teenager, but my son's developmental age is much younger.

I wish it hadn't bothered me.

I was happy to see Ben happy. He loved the games, the pizza, and seeing ChuckECheese in costume.

But a part of me was embarrassed that my 16-year-old wanted to go to ChuckECheese. Ben is the size of a six- or seven-year-old, so it wasn't like he stood out particularly.

We've had other birthdays where only one friend has shown up. This year four kids came. Two teenagers from his school – one deaf and one with autism – his younger friend Liam and a teenage girl Ben knew when he went to an alternative school.

The deaf boy clearly found ChuckECheese uncool, but the others enjoyed it.

Whenever Ben's birthday rolls around I feel a tinge of sadness. He's not doing what other kids his age are doing, and he never will. He wants to have lots of friends come to his party, but the truth is that he doesn't have friends – not the kind that he sees on a regular basis and is able to maintain an ongoing relationship with. There are kids who have been fond of him over the years, and sometimes we’re able to get them out.

I wish I didn't feel this way. I wish I didn't have any ambivalence about his slow development or inability to follow social norms. Sometimes I feel Ben's presence in my life is a constant reminder of where I'm lacking as a person: I don't have enough patience. I'm not as accepting as I need to be. I care too much about fitting in.

And I couldn't help thinking, what will Ben do for his 17th birthday? Or his 25th? Will we become lifelong regulars at ChuckECheese?

The bottom line, I guess, is that it doesn't matter what Ben chooses for his party next year, as long as he enjoys it.

Today my younger son came up with this brilliant idea: "Dad, why don’t you go to ChuckECheese for your 50th?!"

Now at least then, I wouldn't have to worry about Ben being the oldest kid in the place.

"What keeps us awake at night is knowing we won't be here forever. And always questioning whether we're doing the right thing. We want Carol to have a life that is rich and includes all the things she does and one where she is protected – whether we're there or not." Pat Ellingson (left) with sister Carol (centre) and partner Carolyn (right)

The above passage is from an interview I did with Pat Ellingson, creative head of children's media at TVO, Ontario's public education media group. Pat's sister Carol came to live with Pat and her partner Carolyn five years ago, when she was 45. Carol – who has a developmental disability – had lived with her mother in Vancouver until she died. She lived for a short time with another of her sisters, but it didn't work out. So Pat brought Carol to Ontario.

As I interviewed Pat, it struck me that she shared the same feelings and concerns for her sister as I have for my son: the love and commitment, the pride, and the constant wrestling with how to create a rich and safe life for a family member who is marginalized and diminished in our culture: "I don't think you can ever assume that the system will take good and appropriate care of your sibling with special needs," Pat said.

Much research has been done about the positive and negative impacts of a child with a disability on brothers and sisters. A 2003 study in the Journal of Family Nursing found school-age children who have siblings with disabilities scored significantly higher in co-operation, assertiveness and self-control than peers with typically-developing brothers and sisters. Yet we also know siblings may resent the attention the child with special needs receives; feel guilty they were spared the disability; and worry about how their sibling is treated. Siblings benefit from the same kind of peer support that parents find in support groups, but often don't have access to sibling groups.

Professionals tell us to make plans for our child's future care so that siblings don't feel responsible and will never have to assume the role of primary caregiver. But when the system is strained to provide even basic supports, is that realistic? I hope my other children play a leading role in Ben's life as adults and step up to the plate to ensure he lives a good life when we're gone. I hope they show the commitment, compassion and vision I see in Pat, which I believe is unusual.

In the June print issue of BLOOM we'll run a full interview with Pat about growing up with her sister Carol, making the decision to become her primary caregiver later in life, and current efforts to support Carol as she moves into a Community Living apartment.

If you’re in Toronto, you may be interested in a sibling workshop for parents and brothers and sisters of a child with a disability at Bloorview on April 27. Contact jchiu@bloorview.ca for more information.

Our guest blog today is about a big event in every kid’s life – the first sleepover! It’s written by Marcy White, mom to Jacob Trossman, 7 (above, with his friend Batsheva). Batsheva also attends overnight summer camp with Jacob. You can read about Marcy’s work to raise research funds for Jacob’s rare myelin disorder at www.curepmd.com. Thanks Marcy! Louise

The sleepover
By Marcy White

My son Jacob, 7, had his first sleepover on the weekend. It was at a girl's house. Her parents were away for the weekend. And he had a great time.

Jake is not like most boys his age and can't do what most kids do. My little boy has Pelizaeus-Merzbacher disease (PMD), a disorder that affects all the nerves in his body. He can’t sit by himself, he can't speak and he can't use his hands to push a toy truck. But he understands conversations and has a wicked sense of humour. Physically, he is severely challenged. Cognitively, his sharp mind is trapped inside a body that doesn't work the way it should.

My young son with a smile that lights up his entire face has few friends his own age. Taryn, a girl 10 days his junior, is Jake's girlfriend. This incredible blond-haired girl with deep dimples on both cheeks donates all her tooth fairy money to PMD research so she can help find a cure for Jake's disease. Jake cracks up with laughter when she leans over to kiss his eyeballs. Another friend is Harry, a little boy who is seven-years-old and in the same class at school. Like Jacob, Harry is in a wheelchair and cannot speak. When both boys are placed on a mat on the floor, they hold hands and laugh together. When Harry's name is mentioned at home, Jacob grins.

But the majority of Jacob's friends are older girls—teenage girls—affectionately known as Jacob's Princesses because they always wear the long skirts favoured by orthodox Jewish females. These girls take turns holding my son and dancing with him. They complain about “Jacob withdrawal” if they don't see him for a week. So when one of them invited him over for a sleepover at her house, I immediately said yes.

Late Friday afternoon, with Jake's clothes, medications and liquid nutrition packed, his wheelchair and IV pole crammed in the back of the van, we set off for his latest adventure. During the car ride to his friend's house, I explained to my son that he was going to stay there for Shabbat (the Jewish Sabbath which runs from sundown Friday until after sundown on Saturday) and I would come pick him up the following evening. The smile on his face assured me that he was excited about this new experience. As I carried him into Batsheva's house, her warm embrace welcomed Jacob and allowed me to leave without a murmur of protest from my son.

Back at home, my house seemed different. It was quieter without Jacob. With both my daughters in bed by eight o’clock I realized that this was the first time since Jacob’s birth that I would be able to lounge around in my pajamas before going to bed. Emily, the night nurse, would not be arriving at 11:30 to tend to Jake's needs during the night. This would be the first time in almost eight years that my entire household was asleep at the same time. It was a normal situation for most families, but felt strange and unsettling to me.

The next morning was surreal. My typical Saturday craziness begins at 9 a.m. when Emily leaves. Within minutes, Jake is screaming and everyone is hustled into the car for a few hours of driving and time-wasting errands to Home Depot or Wal-Mart, until it is time for all the kids' swimming lessons. This particular Saturday was more serene. We stayed in bed and watched cartoons on television until mid-morning and gradually made our way to the pool in time for the lesson. It was a pleasant way to start the weekend.

But again, it didn't feel right. Jacob wasn't with us.

As the day went on, I noticed how quiet my house was. I wasn't glued to the clock to make sure I didn't miss a medication dose or run out of bibs for my chronic drooler. There was an element of tranquility in my home, a word that isn't usually used to describe our abode. But the calmer my life became, the more agitated I felt.

My mind kept drifting to thoughts of my son. I wondered if Jakey was having fun and what he was doing. Because he was celebrating Shabbat with his friends and the Sabbath rules dictate that they could not use the telephone, I was unable to get an update. As much as I wanted to, I could not get in touch with him, short of showing up unannounced at his friend's house. I reassured myself that he was in capable hands and if something terrible happened, surely I would be notified. I felt helpless but was trying to be strong so Jacob could have this incredible experience.

At 7 p.m. I went to pick Jacob up from his adventure. As I hurried up the front stairs and waited at the door, my heart beat hard with apprehension. Questions were swarming around my brain: Was he able to sleep in a new bed? Did he wake up scared and unsure of where he was? How was his day?

When the door opened and I saw my gap-toothed son sitting in his wheelchair in the middle of the living room, my racing heart slowed. When I was close enough to ruffle his thick hair and give him a big hug, I knew that he’d had a wonderful time.

My son had a sleepover at a friend's house. He had a fantastic time and by all accounts did not miss his mom. I, on the other hand, missed him terribly. But despite my internal struggle with his absence, I know I did the right thing in letting him go. Jacob has many medical issues that make his life more challenging than most. But he deserves to have regular childhood experiences and I will do whatever I can to facilitate them. Now if I can figure out a way for him to try waterskiing...