How to talk to your autistic child about surgery

Step 1)
Determine what the surgery will be.

Step 2)
Determine when the surgery will be.

Step 3)
Have a panic attack.

Step 4)
Sit your child down. Open mouth. Close mouth. Walk away.

Step 5)
Sit your child down again. Open mouth. Close mouth. Repeat several times until your (undoubtedly very blunt) child asks you why you look like a fish.

Step 6)
Throw in the towel. Make the doctor do it.

Dear Kai

Dear Kai,

I love watching you run. And jump. And try to skip. And just...being an active, hyper little boy. I love it. There's a flash of pride, because that's my boy, and look what he can do! There's a bit of "Ha!" thrown in, because how many doctors said we'd never see the day you would walk on your own? And there's a bit of laughter as well, because you're so funny.

And in just over a month, I'm going to take that away from you.

I'm sorry.

Mom and the doctors aren't trying to be cruel or unfair, and I know that's exactly what I'm going to hear, wails of "Mommy, it not fair! Kai wants to play too!" And you're going to be in casts for three months, unable to walk.

And it's all because of a decision that's never been in your hands, and instead was placed in mine. I could have said no. No one would blame me-you're my baby, and surgery is incredibly risky for you. Even with medication for your blood disorder, it's still risky, as it is for anyone. But I choose to go through with it, because I think the outcome is going to be better for you.

You see, your feet and legs...they're not like Mom's or Taryn's, or even Lala's or Connor's. Your muscles, baby...they got hurt when you were born. And your bones didn't grow right, and your tendons, little things like rubber bands that help your muscles and bones work, they can't do their job right-they're not long enough. And there's some stuff going on in your head too that keeps you from being able to walk long distances without falling, or run without tripping, and it's why you can't skip and Connor can, and so much more, and there's nothing I can do about your brain. Not a thing Mommy can do to fix what happened to the connections in your head.

But I can fix your feet. And your legs. So much of what happened with you and to you, Mommy can't fix. I can never make it go away. And it's Mommy's job to fix things, and to give you the best I can. So I'm going to fix what I can-your legs and your feet.

And I know it's going to hurt. And I know you're scared. I'm scared too. I'm scared that it's not going to work. I'm scared that something will go wrong. I'm scared, terrified, really, that you won't come out of it. Oh, I am so scared of that. It's been my biggest fear since they broke my water the day you were born and there was blood when there shouldn't have been. Your whole life...I've been terrified something horrible will happen to you.

But we can't let fear control us, baby doll. We can't let fear keep us from doing things that might improve our lives or help us get further in life. The most courageous thing you can ever do is face your fears and push through. And you, my little Batman, have pushed through so much. When I lose faith in my ability to push through, I think about all you've done and how far you've come and everything the doctors said you'd never do, and I know I can keep going. You're not as "fantastic" as some kids, who've pushed through things much more horrible than you have-kids with cancer, kids who've survived horrific abuse, kids who were born with fatal illnesses or genetic issues that should have killed them who are still alive and pushing through every day-but you're still MY superhero, and you've come through a lot. I keep faith that you'll come through this too, no matter how scared I am.

So, baby, we're going to face this fear head on. Aunty Sarah is coming, Lala Lilly will be there, and you know Mommy won't leave that hospital without you. Never have, never will. We'll push through the pain together, and we'll learn to walk again...together. One step at a time, baby blue.

I love you moon back to pizza,
Mommy

Emote A Little, Will You?

Happy. Sad. Angry. Sleepy.

No, not the seven dwarfs. Emotions. Feelings. Those things that we all deal with every day.

It's like a foreign language for kids with autism, did you know that?

It's a fact I learned the hard way.

Kai doesn't understand emotion. His own or anyone else's. It's like being a foreigner in another country whose language you've never learned. (See "Welcome to Holland" poem for details.)

Conversations about emotions have always gone a little something like this: "It's okay, honey. Mom's just frustrated." "Oh. Kai fwustewated too, Mommy." "Ya? How come?" "I don't know."

It's not that he can't feel. He does. It's not that he can't empathize or sympathize. He does. He just doesn't know what it is. He has no clue how to identify any of the emotions.

After a lot of early intervention and therapy and feelings charts and discussions and play and LeapPad 2 apps, Kai has finally learned happy. He knows happy. He's GOOD at happy.

But human beings are not a single set dial on the radio. We are complex beings with complex emotions that reach far beyond the realms of "happy."

Understanding one emotion will not get a person far in this world.

Which is why I danced for joy in my front yard, not caring who saw me or what they thought, when Kai looked at me yesterday as he was helping my sister bag up the leaves I'd raked in to piles, and said "I'm mad! My shovel won't work. Kai is mad!"

His orange toy shovel had gotten stuck in the dirt of the front yard, and he couldn't get it out. He was angry.

AND HE KNEW IT.

I have never in my life been so happy to hear that someone is angry.

So time got away from me again...

Time got away from me again! We moved in October, not far, just across town. Mommy has a job!!!!!! I'm so excited! We were blessed to be able to buy a new vehicle with help from a donation from my boss, of all people! Kai is scheduled for surgery on April 15 for his feet-little nervous...okay, a lot nervous!

Kai was diagnosed January 14 with nocturnal epilepsy. Updated diagnoses stand at: autism, ADHD, ODD, being watched for bipolar disorder, nocturnal epilepsy, asthma, allergies, CP, Von Willebrand's Disease, clubbed feet, tibial torsion, hip dysplasia, sensory processing disorder (sensory avoiding) and mixed sleep apnea. And he's only 3 and a half.

On Wednesday, we go in to test for a new medication for his VWD. I'm so excited-if this works for him, he can play sports potentially! So keep your fingers crossed, folks!

Taryn is getting his glasses on March 10th. And he was diagnosed with sensory processing disorder (sensory seeking) as well, and is on the neuro waiting list for possible absent seizures. :-( My poor little baby. But he has one heck of a vocabulary on him! He's so smart! He will be two in May, and my little Einstein speaks in complete, understandable even by total strangers sentences.

I ended my current college semester with a 3.8 GPA. I am planning to take a break until after Kai's surgery.

And so to the point of all this: Kai's surgery.

April 8th, he will go in to get a set of walking casts to help stretch out his muscles and tendons. April 15th, we will go in to Nemour's in Orlando for surgery to transfer tendons from point A to point B, which they are hoping will help release the tension in his legs and potentially enable his tibial torsion to fix itself instead of having to surgically break his legs and turn the bones. He will then be in bent knee casts for up to three months, after which he will receive physical therapy in order to stretch his muscles and learn to walk again. All in all, we are looking at a rough few months, possibly a rough year!

To answer anyone who may be curious, yes, Kai is aware of all his issues. He doesn't understand most of them, but he does know he has them. He does not try to use them as an excuse, and on the rare occasion that he does, he isn't allowed to get away with it. He is also well aware of his impending surgery, and is scared out of his mind about it. He fears casts-he has the memory of an elephant and still remembers spending the better part of his first couple years of life in them, and he is utterly terrified of anesthesiologists after his surgery when he was two. Lala is taking the day off work to come with us, and Aunt Sarah will be there as well, so hopefully he will feel a bit better about it. I know I won't!

I know some people will tell me (and several have already done so!) that surgeries like this are routine on kids like Kai and that his doctor knows what he's doing. To you, I say I don't care how many times Dr. Frick has done the surgery-the point is that he's never done it on my baby. So, thank you for your attempt at comforting me, but until he can look me in the eye and say "Nothing went wrong when we did this on your son before, and I feel confident in our hematologist and anesthesiologist and myself and our ability to ensure it goes smoothly this time too," it's a moot point. :)