I've always loved surprises. The good kind, like finding money in an old coat or running into a great friend. I'm less interested in surprises that involve car trouble and rain during a picnic, but they, too, have their place. I like an instant surprise. Not the kind where you have to wait and wonder what is about to happen because those can be painfully anticipatory. I'm partial to the kind that come out of nowhere like flowers on a Tuesday, a last minute trip or the Red Sox winning the World Series.
I've always enjoyed surprises. Even as a child when my friends and I would make our way to the corner store to buy candy, I couldn't help but be sucked into those surprise bags, every time. Even as I began to realize that these bags were largely made up of the candy and treats the store owner couldn't sell, I would still shell out my hard-earned chore money for the pleasure of tearing open that bag, even if I were to find stale candy and baseball cards with players we didn't know.
For Kate, and others with autism, the unknown is a scary place. So much of her day must be predictable and safe or things can quickly get out of hand. She doesn't have the luxury of enjoying surprises because the confusion it brings can be too much to bear. Kate lives in the moment and while there is much good that can come from that, there is also heartache when the excitement of a birthday party or a holiday becomes too much.
Now, I dread surprises. I worry about parties and holidays. I have angst about travel and I fear kindergarten most of all. Kate doesn't though, she doesn't fear any of these things. She may become overwhelmed at times but she doesn't live in fear of anything. I guess there is a lesson in that.
To honour Earth Day we'll spend some time talking to our kids about our planet. We'll even spend some time working on an Earth Day craft but when we settle in tonight to relax and reflect, I'll have some Netflix options ready for each family member.
For Alex: Addicted to Plastic.
For Grace and I: David Attenborough's Wildlife Special
For Kate: Bubble Guppies followed by Dinosaur Train
For the Whole Family: The Blue Planet
What would you choose?
Kate's birthday is fast approaching and once again I'll lose the selfish comfort of saying, "she's only three."
Now, she will be a four-year old in diapers, a four-year old who can't answer questions, a four-year old who screams and cries and bites and kicks. A four-year old who wears headphones and pressure vests. A four-year old who needs chew toys and baby food. A four-year old who can't tell us about her day or her needs or her fears.
A four-year old who's hugs will make you melt. A four-year old who has a smile for everyone. A four-year old that never judges, criticizes, complains or lies. A four-year old that adores every soul she meets and can talk to animals. A four-year old that makes me weep when I watch her sleep. A four-year old that has inspired thousands and thousands of people.
A perfect little four-year old girl.
If you'd like to send Kate a birthday card please mail to:
Twelve Crushing Meltdowns
Eleven Cabbies Cursing
Ten Fingers Flapping
Nine Double Scotches
Eight Hours Stimming
Seven Grand in Charges
Six Bruises Forming
Five Sleepless Nights
Four Angry Pilots
Three Painful Blisters
Two Nose Bleeds
And Big Trouble at Airport Security
Remember back in January when I wrote to "Dear Daddy in 16c"? So much has happened since then. Dear Daddy turned out to be a man named Eric and we've since become friends. In fact, this week we are flying to New Jersey to meet Eric and spend some time with his family while we support Easter Seals New Jersey in their Walk With Me fundraiser.
Easter Seals has been kind enough to invite us to The MetLife Stadium (where the Super Bowl was played this year) to participate in this fundraiser. Grace and Kate and our Team Captain Eric have done an excellent job of fundraising. Alex and I have not fared so well, but we still have time! Click here to see how well we've done.
Obviously, I realize the difficulty of taking Kate on a plane was the impetus for the letter to Eric and now we are going to give it another go, but one of the many messages we hope to spread as long as we have this forum is to live without fear of judgment. I have discussed this plane ride with Kate, at length. She wakes up each morning asking to go to the 'airpwane'. She is thrilled and we will make it work.
We'll take some time in New York City to expose our girls to museums and architecture. We have a special trip to FAO Schwarz and a tea at the American Girl store planned, as well. I might even knock on Frank Gehry's door (if I can get past the doorman which shouldn't be too difficult with a little ninja to help).
I do wonder, though, who will take that seat beside our Kate this flight. They have a tough act to follow, that's for sure.
I'm soft. I'm a pushover. Both of these statements are true. I give children with disabilities a pass because I refuse to add to their list. If giving them a break makes me wrong, I don't wanna be right.
Are you catching my drift?
Do you think I do this because I have able-bodied guilt? Wrong. Do you think I do it because I have a daughter with autism? Nope. I do it because when the cards are stacked against a little child and navigating their day takes every ounce of their energy, I will not be one more hurdle, one more challenge or one more pain in the ass for that little person .
Be firm if you must but tough love is bullshit. It doesn't work. It hurts. It promotes distrust and fear. Stop doing it to our most vulnerable. It is fine to be soft and safe. It is ideal to be kind and respectful. It is crucial to be thoughtful and fair.
Grace and Kate's mom. (Shanell)