Tag Archives: Autism

Another Word

I’m feeling a need to write through my feelings again. After crawling into a post-cancer cocoon for the past year and a half, I’m back.

I started so many posts over the past few years. Fretted and fussed about getting “back into it” but quickly set it aside when it started to feel like pressure. I do not need more of that dreaded s-word in my life (by this I mean Should, but the other one fits too).

So here I am again WANTING to write for the first time in I can’t remember how long. Because once again I need to process my experience and nothing works quite like this. Throwing it all up against the wall to see what sticks.

Fair warning, I doubt it’s gonna be pretty, or witty, or all that inspiring. Also, there will be swearing. I swear now. I want to honour my family and my beliefs, truth, justice and the Canadian need to apologize frequently… but I’m too tired to self edit that much. Or at all.

This morning we got another official diagnosis for our little B (who remains happily in remission from leukaemia). I say little, but she’s actually 14 with all the sass and hormones that this entails. I’ve long ago made peace with the words “Down Syndrome,” “OCD” and, yes, even “cancer survivor.”

These are our words. Not who she is, but an important part of our daily life. Words that describe but do not define her.

She remains feisty and adorable, soaking up all the attention in the room. She’s challenging, very much so. She likes to be in control. She never stops talking. She’s often inappropriate – belches loudly, talks about poop, ignores people and makes us laugh every day.

She’s a lot of work. And she’s worth it!

But she wasn’t outgrowing some of the quirks that we used to chuckle over. In fact, they were getting much worse. More rigid. More controlling. More strange words and tics and coping rituals.

And while she remains an attention sponge, she has very little interest in actual friendships. Her social interactions follow specific scripts, whether they make sense or not. She continues to introduce herself and ask the names of old acquaintances, even family.

She loves imaginary play, but it sticks tightly to “the plan.” If you try to improvise or cut her scenarios short she gets very agitated. Her obsession with her favourite stuffed dogs (Pluto!), previously a helpful incentive, have become a hurdle. They’ve been banned from school. And the bus. And helping mom drive the van.

Hardest of all, she perseverates. There’s a ten dollar word for you. It sounds kind of admirable, like perseverance. According to dictionary.com it means: “to repeat something insistently or redundantly.” According to me, it is a very efficient means of causing mom to lose her ever-loving mind.

All kids do it sometimes, but B is a world champion.

Standing beside my bed in the middle of the night while I’m sleeping: “Mom, mom, mom, mom, mom, mom, mom, mom, mom, mom, mom…”
x 578 900.

Now louder and with more feeling: “ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM!…”
x 1 987 638.
(It should be noted that she is extremely lactose intolerant and not permitted ice cream these days.)

So we wondered. And we remembered the handful of voices that had suggested it in the past. And we asked questions, read articles, visited the paediatrician and the psychiatrist and then waited, waited, waited (for almost 2 years) for her turn to be assessed.

The psychologist we saw initially gave us a pretty clear (and horribly depressing when compared to every typical 14 year old girl in the world) picture of B’s cognitive ability. I hate those stupid IQ assessments and as a parent find them entirely pointless. He also cautioned us not to expect a positive diagnosis. She’s just so outgoing and engaged and nothing like the stereotype of this diagnosis we all know so well.

But stereotypes while sometimes true, can also be total bullshit. (For further proof: kids with Down syndrome are always SO happy and angelic.)

If you haven’t guessed where I’m heading with this, the developmental paediatrician we saw today said it was a slam dunk. We’ve added yet another word to our lexicon – autism.

I’m not surprised. Some studies suggest that 10% of children with Down Syndrome (DS) also have Autism (ASD). While mysterious there’s clearly a genetic link. These dual diagnosis kids often present different, seeming more social and expressive.

After years of hearing the grumbling in DS circles that the ASD families get all the money, I was hoping we could cash in on superior funding. Also, we were tired of having to explain that B isn’t just like every other cute kid with DS that teachers and workers and friends knew. Most of all, we craved the validation that something else, something more is going on, we aren’t just over-reacting and under-parenting.

I’m not surprised. I thought I’d be thrilled to hear it.

I’m not surprised. But I am strangely devastated.

It’s just another word. It describes our reality. It doesn’t change a single thing. And knowing officially will probably make things better for all of us.

But it’s another damn word. And she has so many already.

There will be a day that I need to rally and focus on possibilities, find the silver linings and tell the pretty stories. But today, today I’m just sad and angry and so fucking tired.

 

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Disney and the Magical World of Disabilities

It’s been called a “Modern-day Mecca.” Most North American families attempt a pilgrimage at least once in their life time. It’s billed as the Happiest Place on Earth. It’s Disneyland.

My parents hated it. The slick consumer culture, the crowds, the noise, the underlying thrum of excitement, but most of all, the price. They didn’t feel the magic.

My husband and I do. We love Disneyland! We’ve always loved it! The price is a stretch to say the least, but well worth it to us for the excellence in every detail, the nostalgia, the rides and the underlying thrum of excitement. Since we have family who live in the area, we’ve been able to go a lot more than the average family. It is a perk we don’t take for granted. Bringing our children, especially when they were young, remain some of the best family memories in our arsenal.

The First Visit

IMG_0024We took our youngest daughter as a baby, along for the ride while her older sisters gaped in amazement at the “real” Winnie the Pooh and screamed with delight on the Peter Pan ride. She slept through most of the day, but looked cute in pictures. We were just like everyone else.

The Second Visit

Two years later we were back. I had some misgivings about B’s ability to handle the day, so my parents (who love us enough to endure the park they dislike) tagged along. I had heard that there was some sort of accommodation for guests with disabilities, but resolved to avoid it. I was embarrassed to ask. I didn’t want to be unfair. I was sure we could handle it, just like everybody else.

Unlike a typical 3-year-old, my daughter wasn’t able to walk or even stand on her own. Desperate to be mobile, she would scoot on her bum at an extraordinary speed. As you can imagine, this was a filthy way to travel and terribly hard on clothes, and terribly inconvenient to adults who don’t expect a headstrong little speed bump to pop up unexpectedly.

She was okay as long as we kept her in the stroller, but her sisters were eager to go on rides and show her all the wonders she had slept through last time. The waits weren’t particularly long, but holding a squirming, screaming toddler can make time pass extraordinarily slowly. Not only was she dying to move, but she could see something exciting, just out of reach, and was enraged that we wouldn’t let her go to it immediately. As the lines wind closer and closer, then back around, farther away again, she must have thought we were playing a cruel trick on her. By the time we made it onto the ride she was almost inconsolable.

She LOVED being on the ride. She would squeal and clap and laugh with pure excitement. For 30 seconds. Then it would be time to get off; we would pry her fingers off of the bar and drag her away and head to the next lineup. By now, she really was inconsolable.

After a few hours, she had to go home. It was all too much. It was just too hard. The crowds. The noise. The heat. The waiting in line. She wasn’t the only one being punished for it; we all were, the whole family and everyone in her vicinity.

Third Time’s a Charm

Disney 003Our next visit, I was prepared. We had been planning and talking about this day for months. B had been looking at her sister’s pictures and had become enamoured with the Disney Princesses (though she didn’t have the attention span to sit through an entire movie). I had documentation of her Down syndrome (in case looking in her eyes wouldn’t be enough) and after our last disastrous visit, absolutely NO compunction about taking whatever extra help Disney could offer us. After all, I’ve finally made my peace with the fact that we’re not just like everybody else.

There seemed to be a lot of confusion about where and what we were needing, but we finally found ourselves at the City Hall talking our way into a “Special Assistance Pass.” They didn’t give it willingly at first, but I stood firm: we just can’t handle a repeat of our last visit, not when she’s so excited to be here.

The Pass was intended not just for guests who have visible disabilities, but also those with cognitive, emotional or behavioural problems and need extra support to be able to enjoy the Disney experience. Usually, this meant using an alternative entrance (fast pass or going in through the exit) and waiting there. We didn’t cut to the front of the line right away, but waiting in a calm, cool, less crowded spot makes all the difference.

I’ll admit, it makes our ride experience much faster. That’s the only way it works for us. B can’t tolerate many different rides, so mostly we went on the tamest rides over and over again. But she was wild with excitement!

There’s an age, when adults are giants and characters in books/movies are real and that cool veneer of realism hasn’t yet begun to form. I love taking my kids to Disneyland at that age. They call it “magic” and it really is. My 5-year-old was there and we all basked in her wonder.

Now

She’s still there. At 9-years-old she still believes. She is still amazed. She watches “Brave” at least once a week and if you can understand the words, she’ll tell you the entire story. She often stops and looks at the Disneyland pictures hanging on the wall. She asks to go back all the time.

There’s not much that our entire family, big kids included, can do and enjoy together. Outings are hard. Interests range wide and far. Attention spans are short. These days, B is quickly overwhelmed by new situations, especially ones involving crowds and noises. Even more so than 4 years ago, she needs support.

Now we have a little brother in the mix. He’s never been to Disneyland, and that just seems wrong when you consider how much our family loves it. He has his own blend of special needs: extreme hyperactivity, sensory processing disorder and general impulsivity to name a few. I’ve learned a lot over the years about our limits and our needs, and I’m no longer embarrassed to ask for help. He needs support.

We’ve begun planning (and saving) for a family trip to Disneyland. It’ll take a while, so we’ve booked a timeshare for December 2014. But that anticipation is half the fun for our crew. We’ll have our days mapped out, eateries scoped and show times noted.

That is, if Disney has a workable special needs Guest Assistance program available…

Right now, Disney is getting rid of their Guest Assistance program. It has been badly abused over the years, which has ruined it for those of us who truly need it. They are rolling out a new program on October 9th. 

It sounds terrible.

I had hoped that this was one of those online stories that was wildly exaggerated, but my research has been discouraging. The Disability Assistance System is like a modified Fast Pass, which involves at least two extra lineups/waits, only applies when the wait time is more than 45 minutes (waiting that long is so far beyond our son’s capacity that it’s laughable), AFTER extra lineups, we’ll end up in the regular line anyway (which I’m sure will be fun for everyone)… oh, and it only works on a select few rides.

Without extra help, Disney isn’t do-able for our family.

Just one more thing that’s out of our reach.

There are other families with even more complex problems in the same boat.

As a company, Disney has a reputation of going the extra mile, making every effort to create an amazing experience for ALL their guests. They have certainly won us over in the past. I can only hope that they will hear what special needs families, and those who support them, are saying. I hope they will build a system which actually helps my children and others like them. I hope they’ll make it a priority.

If you want to help, please:

Sign the petition

So here’s me, sad that so many people abused this system which worked so well for us. Sad that the new system seems so unworkable. Mostly, sad that we might never get to share a Disney adventure with our boy.

For more information:

Thanks Erin, for bringing this to our attention!


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