Vindication… and Obligation
It’s over. Our long journey for a Canadian autism diagnosis has ended, and we are victorious.
So why am I so tired?
We went to our family diagnosis and funding meeting this week, girding ourselves for any outcome. I wasn’t hiding my nerves well, so the wonderful doctor let us off the hook immediately. Jack is on the spectrum, he has ASD. We knew that, but there were no guarantees the team would agree. Thankfully, they did, and now Jack is eligible for all the support that Canada and the British Columbian government have to offer.*
After she presented the official diagnosis, we met with a case worker who explained the funding process, and where to go now. Unlike in California, where either the school district or the regional centers handled coordination of services, we will make most of the decisions ourselves. It’s a bit confusing, but I’m glad we have a lot of experience in the autism world to guide us.
We sat in the car afterward, letting it all sink in. I felt relief, I felt happiness… and I felt a weight bearing down on me. My husband and I looked at each other. We were both thinking the same thing.
Jack is special. Jack has always gotten exactly what he’s needed, and then some. But other children are special, too. Our monumental task is over, but our – my – biggest job is just beginning.
Since Jack was diagnosed, before even, he has had the full support of everyone charged with his care. We call him the “poster child for early intervention”, and it really is quite true. Every step of the way, he’s had exactly the therapy he’s needed, the support he’s required, and the attention he’s deserved. Here in BC, where his school has not yet received a penny for his support during the year and a half we’ve waited for his diagnosis, Jack has had a full-time special education assistant (SEA).** Even though we have occasionally had to wait, Jack still prevails in the end.
I know many, many families in the autism community, and their stories are all different. There are children who are lower functioning, there are children who are high functioning. There are children with asperger’s, and children with PDD. The spectrum is wide, and so are the services they’re receiving. I would love to say every child is getting exactly what they need, but that simply isn’t true.
I know children who are not supported in school, and children who have had to leave school because of it. I know children who need speech therapy or occupational therapy or sensory integration therapy, but linger on waitlists or are simply denied due to lack of funding. I know children who have waited years for an accurate diagnosis, without which they cannot even get on those waitlists.
I won’t say we’ve had an embarrassment of riches when it comes to Jack’s therapies, interventions and supports, as he’s needed and deserved every one. But that feeling lingers when I speak with parents so desperate for even a fraction of what we’ve had. It pulls at my heart and puts a fire in my gut.
The weight I feel is obligation. I cannot allow my fight to end with Jack. He is my child and it’s my duty to advocate for him, but someone needs to stand up and speak for those who are not as fortunate, for whatever reason. Autism is many things: daunting, confusing, challenging, and oftentimes inspiring. What autism need never be, though, is a tragedy. Every single child and individual on the spectrum deserves the chance to be the best they can possibly be, through therapies, interventions, supports, or whatever it takes. Every family touched by autism deserves to know they’re not alone on their journey.
Jack and I have completed this leg in our marathon, and we have every intention of winning the whole thing. We also intend to take as many with us as we are able. We can, and we will.
Swinging into the future...
“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
― Eleanor Roosevelt,
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*Which isn’t a whole lot, honestly, but that’s another topic for another post.
**I was quite pleased to take in his diagnosis paperwork yesterday, which will now entitle his school to $18,000 a year specifically for his support.
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Two Years of Thanks
Today is the second anniversary of the day I started this website. As I ruminate on the changes starting Autism is A Trip has made in my life, I can’t help but think of all of the things I am thankful for.
The people and groups I have come to know through the Autism is A Trip Facebook page.
The people I have met through the comments on individual posts.
The organizations I have explored and often joined.
The other bloggers I have discovered, enjoyed, shared and commiserated with.
Each and every individual I have encountered over the last two years has brought something to my table, be it knowledge, experience, empathy, sympathy or unabashed love. I am thankful for each and every one. It has been an interesting trip, one I hope to continue with you all for a long time to come.
Thank you for coming, thank you for reading, thank you for sharing with me.
As always, I’m so very glad you’re here.
Namaste.
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Guest Post: Off The Top
Today’s post is by Jeff Stimpson, a fellow autism blogger who appreciates the humor on our journey.
Off the Top
Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/
A Christmas Miracle
Somewhere along the line this year, Jack started disliking Santa. Oh, he loves the man and the gifts he brings, but as December rolled around, Jack made it clear he wouldn’t be sitting on the Big Man’s lap, and there would be no photo for the mantle this year.
I have to confess, I’m most likely responsible for Jack’s trepidation.
In late September, before we had even begun to talk about Jack’s birthday or Halloween (our favourite October events), it happened. My boys pulled out their Polar Express DVD and started the countdown to Christmas. I didn’t discourage them much, as I have a deep and abiding passion for Christmas and all the pageantry it entails. I did insist on doing all of our traditional October things like picking apples, decorating pumpkins and the like, but it didn’t take long after each activity for their attentions to turn back to Santa.
One night, as we were looking for books to read before bed, I was quite upset to find that one of their favourites had been ripped to shreds. Actually, its pages had been turned into paper airplanes. We really love our books in this house, and I was beside myself. I decided they needed to learn a lesson in consequence.
I told my big boys that in order for Santa to bring them shiny new toys this year, they’d have to apologize. They needed to write him a letter, in advance of the traditional “I want” missive, explaining that not only had they shredded some books, but that yes, they’d used their special Polar Express train set outside in the mud (it was not, surprisingly, mud-proof), and that they were sorry. I told them Santa wouldn’t bring them nice new things if he thought they would be treated badly, and an apology was in order.
Lennon didn’t like it, but he understood. Jack argued points with me (he did not take part in the book destruction, so he felt he only needed to cop to the train wreck), but finally understood if he wanted new loot, he needed to come clean.
I felt good after that discussion, happy that my children might have actually learned responsibility and culpability. They did, sort of. What Jack learned, though, was that Santa has a bit of an attitude, and he wanted nothing to do with it. He started to tell me how he would write his letter, but he wouldn’t go see Santa. Not even for a second, no way.
I didn’t push him. If I’ve learned anything in the six-plus years of living with Jack, it’s that if he says he doesn’t want to do something, he means it. We went to Sea World once, after a week of three-year-old Jack telling anyone who’d listen that he did not, in fact, want to go. He didn’t want to see sharks or dolphins or whales. He didn’t care about the turtles. He did not want to go, period. We assumed that once we got there he’d change his tune, as he adores sea life, but lo and behold, he stuck to his guns. We did not get to see sharks or dolphins, and he summarily dismissed the huge killer whale swimming right past him. It was the fastest trip to Sea World in recorded history.
Boring
So when Jack said no to Santa, I figured that was that. Last year’s trip to see Santa was a debacle, since the whole family had been sick with the flu the entire month leading up to Christmas. We finally got to see him at the little mall near us one night while we were out, on a whim, looking at decorations. The boys were in their jammies, and the hurried photo we got reflected the moods of everyone involved (even poor Saint Nick, who was minutes away from quitting time and bombarded by a load of sick kids in pajamas). In search of a better experience this year, we packed everyone up and went into the city to the VanDusen Botanical Garden’s Festival of Lights.
Seeing the light
We enjoyed a spectacle of lights, music, Swedish waffles and fun. As we neared Santa’s cottage, Jack started his dialogue of how he wouldn’t be participating, lest we had forgotten his endless lecture during the hour-long car ride to get there. I took the younger kids in, and Jack watched through the windows. For about ten seconds. Then he was hooked.
The Santa experience at VanDusen was like nothing we expected. Santa had his own little cottage (which they called his “living room”), separate from all the hustle and bustle of the botanical gardens. He sat on his big, comfy chair nestled between a fireplace and a beautiful Christmas tree, in front of three rows of benches. Families sat and waited to chat with him, or just enjoyed the quiet coziness. There was no professional photographer, no cameras at all other than those in the hands of grinning parents and grandparents. Santa took his time with each child, asking them questions about their likes and dislikes, their thoughts on the world, and yes, eventually, what they would like for Christmas. He invited them onto his lap if they were comfortable, let them sit next to him if they were not. He smiled, laughed, and exuded absolute joy.
Deep in discussion
It didn’t take long for Jack to assess the situation and change his mind about meeting Santa. He responded wholly to the calm and quiet, and wanted in. As we waited our turn, I watched the excitement grow on his face, his love of Santa overcoming the fears he’d built up in his head.
Jack and Santa discussed the fireplace, the lights, and several other things before Jack finally expressed his desire for a book about airplanes. Jack climbed up next to him and I took the best photos I have ever gotten of Jack and Santa. In fact, the photos I took of the three boys and Santa are, hands down, our best Santa photos to date. There is joy on their faces, all four of them.
Team Baskin with Santa. Joy all around.
As we left the little cottage, Jack couldn’t contain himself. “It was a big mistake telling you I was afraid!” He was giddy with pride. Then he was serious. “Santa loves children all the way to the bottom of the world because he lives on the top of the world.”
Yes, Santa loves all of the children. Even if they tear up books or destroy their Christmas trains in the summer mud. Santa loves the children who are brave, and those who are not. Santa loves the children who can tell him what they want, and those who cannot. Santa loves equally, always.
I will never forget this visit with Santa, and we will go see him in his little living room next year. And the year after that. I hope he knows how much he is appreciated, by the parents as much as the children.
"Dear Santa, Thanks for making my stuff. From, Jack"
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Close Enough to Care
They say small children unleash their anxieties and frustrations on those closest to them. A two-year-old could be a dream child all morning at daycare, then come home and spend the next hour screaming bloody murder at mama. A four-year-old can play all afternoon in preschool, never losing his smile, then tantrum to shake the walls for daddy on the way home. An autistic almost-six-year-old can work all day in school, barely taking a break to play (his choice), and tear down the very foundations upon his arrival at three o’clock.
I am used to this. All of my children have done it, and I remind myself it is because they feel safe and secure with me, enough to put down the “happy kid” facade. Jack, especially, has it down to a science. Even as a baby, when we would keep him out until all hours (because he didn’t sleep until three or four am), he would smile and laugh and have a wonderful time wherever we were. That is, until we crossed the threshold into our home. The door would close, and Happy Jack disappeared, replaced by Screamy Jack. Screamy Jack raged for hours, pretty much in symmetric relation to how long we’d been out. If we went on vacation, he hung around for a week after we returned.
Screamy Jack only likes to be around immediate family, though. Screamy Jack needs the love and support and freedom to vent his frustrations, and only Mama or Daddy will do for that. Actually, it’s usually only Mama who gets the pleasure of his company. Jack has never “acted out” with anyone but myself, my husband, or one of his therapists/aides. Until today.
We have never had “family friends” who lived nearby. My husband and I have friends, some of them have children, and none of them have ever been within walking distance, mainly because we previously lived in a very non-kid-friendly area of a not-too-kid-friendly city. We now live in a neighborhood and region teeming with children, and we were bound to meet some of them, and their parents, eventually. We met Team Hartman (we’re Team Baskin) at the playground near our house. They have three boys very close in age to ours, and we clicked with the mama and daddy. A family match made in heaven.
We have had playdates with Team Hartman, birthday parties, BBQ’s, and all of the things you’d expect from neighbors who are also friends. Our kids are even in school together now that Jack has officially transferred. I know it’s what folks do every day, everywhere, but it’s new to us, and we’re enjoying it.
My husband has a new job with daytime hours, so Mama Hartman has, on occasion, brought Jack home from school with her son. For some reason Jack calls her his “daycare lady,” even though her care really only entails meeting him outside of class, a few minutes of playtime at the school playground, spirited conversation between Jack and her seven-year-old on the way home, and depositing him on our doorstep.
Today, Mama Hartman decided to stop off at our neighborhood playground for a bit on the way home. Jack is always exhausted after school and I rarely take him to play in the afternoons because of that, but I figured since he was already out and about it couldn’t hurt. A lot of lessons were learned today.
Jack loves Mama H, and I know the feeling is mutual. That is the only explanation I have for why, after some good playtime, Jack lost it. He fell apart. He crumbled completely and laid himself bare. She was at the playground by herself with her own three children, the youngest, at two, has his own evil alter ego shown mainly to her. And she had Jack, or should I say, Screamy Jack. He did not want to leave the playground. He did not want to stop throwing things. He did not want her to take an alternate route home (the park is 3 blocks from us). He threatened, he bargained, he screamed, he raged, he cried.
He trusted her enough to let himself go.
Several things went through my mind when she showed up on my doorstep with him, frazzled a bit but still smiling. First, it dawned on me that there have been only a handful of occasions in Jack’s six years that we have let him out of our sight with someone other than a teacher or therapist. Secondly, I wondered if this woman, who I consider a friend, would ever dare take him anywhere but straight home ever again. And third, I realized that there must be a pretty strong level of trust and love there for him to let his guard down and be vulnerable like that with her.
Mama H has spent enough time around Jack to know when he’s in distress, even if she’s not had to deal with it directly. Thankfully, they were close enough to home that I could have come for him if necessary. I didn’t need to. She got him into the car, endured his abuse on the way home, and delivered him safely. I know our friendship may have been tested this afternoon, but I also know I now trust her more than ever.
Once home, Jack apologized for his behaviour and gave her a hug. When pressed as to why he melted down, he said he was “afraid there would be trouble, but there wasn’t.” For some reason he felt fear – maybe he thought she’d tell me he’d acted out and he would be in trouble, maybe he didn’t recognize our neighborhood from a different street and thought he’d be lost. Whatever it was vanished on our doorstep.
Mama H has expressed an interest in learning about autism, and I’m guessing she got a crash course today. I know that as Jack gets older more people will come into his life, and more people will gain his trust. I can only hope they all treat him with the same respect and love.
