Archive for March 2011
One of my early posts was sharing some of Pudding’s words. Even though he doesn’t have the difficulties with language that his sister does, I thought it was about time I did the same for her brother. His quirky little personality is just starting to emerge. Here are some of the gems we’ve had lately:
To me showing him what I thought was a picture of a truck in a book:
No, that’s not a truck. It’s a backhoe. (To the mirth of nearby shoppers, who enjoy seeing a thirtysomething woman being smacked down by a toddler.)
At the playground, upon seeing the bichon frise dog that once bit me:
Mummy, I see a sheep!
Me: No, honey, it’s a dog.
[angrily, to me] No, it’s a sheep.
[To the dog] Baa baa. Baa baa. Sheep say baa. Sheep: say baa!
Daddy and I were in the car discussing pantaloons, a costume used in the period drama, Downton Abbey.
I want pant balloons, please!
While holding his boy parts as I changed him:
This is a carrot. (I think he misheard “privates”.)
One morning, at the breakfast table:
F&%K! F&%K! F&%K!
I need a F&%K! (After much hyperventilating, realizing that he is requesting a fork for his waffle. Phew. Not that he’d have gotten that word from me!)
Do you have any kid gems you’d like to share? It is going to be a long day, putting in the autism miles to get to the sibling study, so I could use a good laugh.
Last week I was sent an email to see if Pudding would like to go swimming with Miss Arizona.
Pudding + swimming = yes. The kid loves water.
Then I quickly checked with the coordinator for details. It turns out there was going to be “swim buddies” and I wouldn’t have to get into the water. Phew. I have healthy self-esteem, but I also have an unhealthy appetite for sweets, and I’m not exactly swimsuit ready. I’m especially not in a swimsuit next to a Miss America contestant ready! 🙂
The birthday boy stayed at home with his grandparents, so I just got to sit back and watch. And because for once I wasn’t juggling two kids with very different sensory needs, I got to really see it. How different she is in the water. It isn’t just that she is more attentive, and coordinated, it isn’t just that she is more social…it is that she is where she belongs.
She is at peace.
She is right.
I watched her play games, follow directions, and swim races. I got to watch her be a regular kid, doing ordinary kid things with some other extraordinary children, and the wonderful volunteers who truly care.
Really though, it was the smile on her face that did me in. It made me curse my lack of scales and fishy tail. That smile was luring me to the water to join her. Where she belongs. Because on dry land she doesn’t seem to fit in.
She is disturbed by the war on her senses.
She feels all wrong.
She is the fish out of water. No wonder she feels the call of the sea.
If I’d have brought my costume, I’d have dived in to be with her. I wouldn’t have cared about being juxtaposed with a beauty queen, my mermaid was so bewitching I thought of nothing but her radiant smile.
As it was, I didn’t have my costume with me, and I sat at the poolside until I was joined by a man I’d never met. He introduced himself as Bob Pizzano, the man behind the water safety program that responsible for this event and Pudding’s trip to the pool with her S.M.I.L.E. program. We chatted about the amazing new sprayground that will open in May, where kids of all abilities with a love of the water will be able to play side by side. We discussed the goals of their program, and what they had already achieved. Lastly we talked about the dark side of the attraction to water that some kids like Pudding have. His own developmentally delayed son, Joey, tragically drowned, and the family subsequently created The Joey Pizzano Memorial Fund,a foundation to honour his life, improve the lives of other special needs children and their families, and help prevent such tragedies from happening again.
I was at a loss for words to express both my sorrow at his loss, and the gratitude I felt for his dedication to families like ours. In the end he was called away to talk to somebody much more important, but the last thing he spoke of was how much he had enjoyed seeing my girl’s smile. Only this morning did I find these words on his foundation’s site:
Joey had a bright smile, hearty laugh and a love of life that touched many people’s lives. Joey loved his family, he loved the water and he loved to swim. The Pizzano family wanted to celebrate Joey’s life through the foundation in hopes that his smile would be seen through the faces of other children with disabilities enjoying the water and their families.
I’m still at a loss for words, so I’ll leave it to the mermaid’s smile. This one is for you, Mr. Pizzano:
Today is Cubby’s 2nd Birthday.
We can have small conversations, he and I. Something I never take for granted. Something I was never sure would happen, even before we saw signs of autism in Pudding. A couple of weeks ago, it was a balmy 70F and we were at the park, having such a conversation. I told him that we were having a birthday party soon for him, like we’d had for Daddy. He remembered birthday cake. He told me he wanted a train cake. I told him I’d do it. He told me he wanted the bouncy castle. Why not? Balloons. No problem. He told me he wanted pretzels, taquitos, guacamole, fruit and candy. I agreed. Your day, your way, little dude.
Then he kept talking about his party, day in, day out. He’d have two candles on his cake. His friends S, A & K would be there. He never wavered in his selections. He had the vision for his party, I just had to deliver it. He was just so excited. The kid who spend too much time in waiting rooms. Whose needs are sometimes crowded out by his sister’s demands. The one who has to go with the flow, because the flow almost always has to go whichever direction Pudding determines. I was going to make it happen.
Of course, he got a cold last week, and of course, he passed it on to me. But I was still determined to make the party happen just the way he wanted. Thankfully his grandparents came to help out. Then, and this is where I began to shake my fist at the sky, it snowed! Not much, but enough to thwart outdoor activities. But I had promised my boy that bouncy castle, so we brought it inside. I’d promised my boy all those foods, and I found or made egg, milk, and wheat free versions of them all. He had the best birthday of his short life. All his friends came, and were thrilled to bounce, and feast on Cubby’s favourite things. He got the most amazing presents from our very generous friends. Our house is now stuffed with cars, trucks, trains and superhero toys. He didn’t want the party to end. He fought going to sleep for as long as he possibly could, trying not to let the day end.
Through all of this, his sister did wonderfully. There was a slight confusion about who gets to open presents, but she managed to back off before it got ugly. With being ill, I hadn’t had chance to make her a social story, which makes the fact that she held it together so well even more impressive. For once all the attention was on him, and she did nothing to interfere with that. I’m calling that her gift to him. It was the day of his dreams, he deserves no less.
The very strange thing, is that this was all supposed to be very different. When I was pregnant with Cubby, his ultrasounds revealed abnormalities. We prepared ourselves that he would be our special needs child, little knowing that we already had one in Pudding. Two years ago in Luxembourg, our little guy came into our world. We expected the worst, and hoped for the best, something that I don’t seem to have stopped doing ever since. Yesterday was another one of those days tipped towards hope. Thinking about the rush of love I felt when I finally held my little fighter, I can’t help but expect there will be many more just like it.
Happy Birthday, my sweet boy, you exceed my expectations every day.
Now, perhaps I should have realized on Saturday. I was buying toothbrushes, yet again, because my kids like to chew on them. I picked up the Elmo one for Cubby, and the Ernie one for Pudding, but she stopped me, and told me she wanted the Abby Cadabby one instead. Hmm. I bought the one she wanted, but kept thinking that I should have taken an Ernie one just in case she changed her mind. After all, Ernie is numero uno in this casa. She requested the Abby toothbrush every morning and night, but I still didn’t think of what that signified. I just thought she preferred it because it was pink. Because the whole deal with special interests is that the kid has them for a significant amount of time. Not a few lousy months. Not a new one all of a sudden. Who can keep up with that?
On Wednesday, her bus home from school was late. And when I mean late, I’m saying that she got on at 12.15, and at 1.30 there was still no sign. I called her teacher to check it had left on time. It had, and she contacted transport to find out what was going on. They were stuck in traffic, having gone back to a previous stop for something they’d forgotten. Finally at 2.00 the bus arrived. It was too late for us to make her occupational therapy session, which is only takes place once every two weeks anyway. Not great.
Pudding’s 4 year-old bladder simply couldn’t take such a long ride. I felt awful for her, because I knew she would have been desperately trying to hold on. Normally the ride is 45 minutes long, which is pretty tough on young kids, but adding an extra hour to that when you can’t understand what is happening must be awful. She seemed pretty nonchalant though, and got changed after some extra long hugs. Yes, I needed to get my clothes changed then too.
With fresh clothes and no plans for the afternoon, it wasn’t long before Pudding was itching to go out. Spectrummy Daddy emailed with the suggestion of the book store, and I leaped at the idea. It has a train table for Cubby, princess and Sesame Street books for Pudding, and a coffee shop for me. It isn’t very often we get win-win-win for the three of us!
Pudding became enamoured with a girl eating a cake-pop. Okay, the cake-pop was pink, I’m pretty sure the girl herself wasn’t that interesting. It still hurt to see Pudding’s awkward advances rebuffed. And it annoyed me that, due to her allergies, I couldn’t treat my girl to a delicious cake-pop when she’d had such a bad day. I took Pudding over to the Sesame Street section to distract her.
Then she saw it. An Abby Cadabby doll. Some other kid had already got to it and pulled off the tags, so I had no qualms about letting her play with it while we there. Cubby was content with the train table and randomly pulling books of the shelves for me to pick up. I was content with a bench and a vanilla latte. And Pudding was content doing a galloping lap of honour with Abby Cadabby. Every once in while she’d canter over and tell me something about Abby, and I lapped up the moment of happiness in what could have been a very bad day.
Only then it occurred to me just how thrilled she was with Abby. How Ernie hadn’t been mentioned at all. How I didn’t have the thirty dollars or so to buy another toy, and even if I did, I couldn’t just get everything she wanted. She loved that Abby, and I was going to have to part them. Curses!
When it was time to leave, I carefully explained to Pudding that we were leaving, and Abby had to stay in the store. She began to cry and jump up and down, so I quickly took the toy and put it on the highest shelf, then grabbed both kids and got out of there quickly. In the car, for the next 20 minutes or so until we picked up Daddy from work, all I heard was:
“I want Abby Cadabby. Want Mummy to get it. Got to the book store Mummy for Abby Cadabby!”
I tried to console her with the fact that Ernie was at home, but that just fueled the fire. Ernie’s reign is over. Abby Cadabby rules now. We heard the demands right through bedtime. Finally I came right out and asked her:
Me: Pudding, do you have a new special interest? (Before you say it, I know! I should not try to be smart with someone who is probably much more intelligent.)
Me: Well, what is it?
Pudding: Abby Cadabby. I want her.
So there you have it. She threw Ernie out of bed, but then reluctantly took both him and Upsy-Daisy. Reminding us all the while that, in fact, Abby was the one she wanted, and I should go to the book store for her. And, you know, repeat for last night.
I know we’ll end up getting her the Abby doll, because we’re suckers for special interests, and for putting smiles on that kid’s face. But I’m determined to make her work for it in some way. I want her to learn that belongings have value, and you need to earn them. We’ve never had much luck in the past with reward charts, but I wonder if this would be enough of a motivator to work. Any tips?
Pudding hates DIY stores. The ceilings are too high, the lights too bright, the smells too noxious, the noises too loud, the people too many. We just can’t go there with her, it is unbearable. Nothing makes it better. So we just avoid them, easy as that. Most often Spectrummy Daddy goes alone, but he was ill, and we really needed some stuff. My Mondays are crammed anyway, but there was no putting it off. Pudding was in school in the morning, so I took Cubby right after his music class. He is more sensitive than she is, so I wasn’t sure how he’d do, but apart from a lot of questions about the various noises, he did okay. Phew.
I only had a brief amount of time before I had to collect Pudding to take her to speech therapy, so I found an assistant to ask where I might find the first item on my list. She helpfully pointed me in the right direction. We admired the fork lift truck(!) for a while and then continued to source the rest of the items.
I’d almost finished, when I walked by the stand for the “Light It Up Blue” campaign for Autism Speaks. I’d been intending to pick one up before April 1st, so walked purposefully over to the display. Before I got there, I was intercepted by the assistant who had initially helped me. She asked if I wanted to buy a blue light bulb to support Autism Speaks, and I said I did. She placed one in my hands, then thanked me for “helping to fight autism.”
It stopped me in my tracks. Fight.
We hear fight against cancer, and diabetes. To her mind, autism is just another disease that needs to be eradicated. Like cancer. The autism epidemic. Stealing away our children. Only Pudding didn’t change. She is the kind of kid that would have been missed in the past. I believe there is an “epidemic” of kids who were previously undiagnosed. Some of her symptoms became more noticeable, but she is the same person. She isn’t stolen away, she is right before my eyes. She is the freest spirit I know, who revels in the things that bring her pleasure, who really lives in her every moment. She has no artifice, she is real. I’m not sure she’d want to fight who she is. I know I don’t.
Now I know adults with autism, and they are proud of who they are, and the unique contribution they bring to the world. I wouldn’t dream of telling them they were diseased.
But then I have only experienced parenting a child who is verbal, who is considered to be “high-functioning.” For all her differences and difficulties, she has less of a disability. I know many parents are living a battle. They have never heard their child speak, and witness only aggression and injurious behaviors. That is their autism. They would do anything to take away all the barriers to their child’s ability. That is their fight, and they are right to fight it.
Don’t get me wrong, there are many things I would like to fight. Her anxiety. Her difficulty with language. Her daily struggles with her senses. But I find that when I get into a fighting stance against those things, it is Pudding who backs away. She needs to be coaxed and comforted to move forward.
My fight is about accepting that I can’t do everything for her. She will struggle, and I will have to witness it.
My fight is about getting her to the point where she could go to this very DIY store, or any other place that she struggles. Or getting them to adapt for her.
My fight is about ensuring my girl is included, be that in school, the wider community, or in a magazine. It is through advocacy where our punches seem to hit the hardest.
My fight is accepting that our lives are different from the way I thought they would be. Acceptance, not an act of violence: submission that is gentle and tough at the same time. The hardest fight of all.
My fight might not be the same as another mother’s, but we still fight together, and our fight will always begin with awareness.
I smiled at the assistant.
“I’m buying the light for awareness. My fight is for understanding and acceptance.”
I hope we’ll be the winners. Our loved ones are our champions.
If you haven’t already, please read and comment on the letter from Jess (A Diary of a Mom) to President Obama, asking him to light up The White House on April 1st and 2nd.
My friend Alysia emailed me with a call to action. One of her friends had received the April edition of Parents magazine, and was dismayed to find there was no coverage of autism. You see, next month is OUR month. Autism Awareness month. Some parents called for action, and Parents initially responded that there was going to be an article about bed tents and 2 online posts. I have a bed tent sitting in a closet that couldn’t ease my girl’s anxiety at night. I write online posts every day to raise awareness, understanding and acceptance. This was not good enough. Why can’t we open a magazine about parenting and find parents like us there?
I joined in the voices calling for more:
I join in with all the other PARENTS here who are appalled at your condescending and dismissive attitude. As a mother of a child on the spectrum, I’m shocked that you were unable to dedicate a single issue to raise awareness this month. It isn’t just our kids who feel marginalized and excluded. We’re parents too, we deserve acknowledgment. In April, we need Awareness.
They listened to us. When we speak together, the world has to listen.
Here is their response:
We would like to say again how grateful we are for your feedback and for the reminders in the last 48 hours that autism is not just 1 in 110—it’s about real people and real families. We feel that one of the best ways we can educate our readers and raise awareness for autism is through real-life stories. This is why we want to give you the opportunity to share your story with us and our audience as part of a blog series in addition to our planned articles. If you are interested in participating, please email FacebookSupport@meredith.com with the following information:
• Your Name
• Child’s Name
• Living with Autism: Your Family Story (Please keep stories to 500 words so we can include more voices in the blog.)
• Photo of your child/your family (*Optional. We will include one photo if you’d like.)
• Link to your personal blog/website (*Optional.)
We are very sorry for making you and your families feel dismissed or unappreciated. It was not our intention. Autism is an issue worthy of Parents magazine’s attention and we hope we can move forward together to raise awareness throughout April.
Please, if you have a story to tell, do share it. Show them that we are here, not just Parents the magazine, but all the parents who are struggling to understand their child’s strange behavior. All the parents who feel alone. Let us make sure that neither they nor their children feel marginalized or excluded. It is too late for the print edition for April this year, but I know that together we can make ourselves heard for next year. Let us show them that we are here.
They are parents like us.