I'm just not ready to let him go

Some people say autism is a gift. Some adults living with autism even say if there was a cure they wouldn't want it.

I don't understand. 

The fact is: My son, who was a beautifully bright-eyed, interactive, and happy one year old, was taken from me by a disease for which there is no cure, at age two.

Clinging to the "bargaining" stage of grief, we fought and fought and fought the battle. We bought silly expensive therapy videos online that promised our child would start talking within weeks. We invested in supplements that others had claimed "did wonders" for their autistic child. We drove him to a therapy center 90 miles away for early intervention that we knew would help him beat this before he even started school. We would've lassoed the moon if someone had promised it would take his autism away.

Like any disease, he experiences cycles: hints of promise followed by periods of regression. A severe regression last Spring caused him to be removed from school and placed back in a full time therapy program. Just weeks ago we were hopeful that his therapy hours could decrease and he could return to his class, but now the cycle is coming around again and the therapist has recommended an increase in hours instead. 

I'll admit it: I've been in denial. But it's becoming more and more clear to me now that this therapy is palliative. We are beyond early intervention, and although I always knew it was a long-shot, it is now clear that his prognosis for truly beating autism is poor.

Part of me says, "I give." Autism wins. 

But I'm just not ready to let him go. 

Autism is not a gift. Waylon is a gift.

And he is my hero. 

deodorant and feelings

I am not typically an overly emotional person. I am not one to lose my temper or to "cry over spilled milk" (unless it is milk that I have painstakingly extracted from my bosoms for the nourishment of my offspring– this I have been known to spill and shortly thereafter freak the heck out).

Anyways, one might think that I would handle it well when I sent Travis to pick up Waylon's hygiene supplies for school, and he came home with this:

WHAT THE WHAT

The school supply list said "deodorant" (which I already object to, because my sweet little mama's boy smells as delightful as the lavender Johnson & Johnson's that I still bathe him in) NOT DEGREE FOR MEN. Cripes.

I did not handle it well.

Perhaps Travis was caught in the crossfire of all the feelings I have been feeling these past few weeks. 

I have been feeling a little bit stressed over a rather large therapy bill from the summer, and I have been feeling a little pissed at the insurance company for not paying it. I have been feeling a bit confused about how to decipher CPT codes and EOBs, and I have been feeling a bit like screaming-bloody-murder at the poor little insurance customer service lady because insurance companies are stupid and life is hard and MY HUSBAND BOUGHT DEGREE FOR MEN FOR MY EIGHT YEAR OLD.

I have been feeling pretty nervous that the clock is ticking and he is eight and he hasn't miraculously recovered yet. I have been feeling a little sad that Waylon's class handbook said they will be working on life skills and participating in the Special Olympics this year- things that I should be feeling excited about, but am just not ready to swallow. I have been feeling hopeful about the boatloads of {hella expensive} progress he's made this summer. When I say, "What's your name?" and he says "Way-yun" I feel like jumping out of my pants with excitement. When I got the text from his new teacher with his first teacher/Waylon selfie of the school year (because he is the cutest {and apparently best smelling} kid in class, you know), I was feeling so so so proud. And when I was trying to post this freaking adorable picture on facebook but I couldn't because MY FACE WAS WET (see first line... "I am not typically an overly emotional person." LIE.) <--- see what I did there- It's a boldfaced lie. hehehe

I was feeling like melting into a big puddle of mom love. 

Did you really look at that picture? Look at it. These kids are so in love with each other. Gahhhhhhhh. Mom love.

When I clean up my wet face and shut up about the deodorant thing and really take a look at my life,

I feel like the luckiest mom on the whole entire planet.

Even though MY HUSBAND BOUGHT DEGREE FOR MEN FOR MY EIGHT YEAR OLD.

Cripes.

My own little SIB

I am a pretty honest person. And I really like to share and spread awareness about autism, and what it means for us. But there are certain things that people don't want to hear about. Enter self injurious behaviors. Or, in the autism world, SIB. 

There's really nothing cute about a kid beating the snot out of himself. It's disturbing, really.

According to this fancy article in Psychology Research and Behavior Management 

"Researchers looking at lifetime prevalence in those with autism spectrum disorders suggest that approximately 50% engage in some form of SIB".

Well we've done about everything under the sun over the past year to make this stop, and now Waylon is on a new medication and in a pretty intense therapy program to try to get this under control. The therapists review data daily to help them understand when/how/why the SIB is occurring- sometimes for attention, sometimes when he is mad or stressed. With time, I am hopeful that he will be able to overcome this. 

Yesterday on my way home from work, I needed to stop at the grocery store for a gallon of milk. And as usual, I just couldn't resist grabbing that one dollar bag of amazingly delicious barbecue potato chips smothered in entirely too much sodium. And then I ate the whole bag on my way home.

Well guess what- there's nothing really cute about a grown woman eating an entire bag of potato chips in her car. It's disturbing, really.

I've decided to collect some data to help me understand when/how/why I feel the need to eat an entire bag of potato chips. Is it the flavor? Price? My lack of will power? Level of stress?

With time, I am hopeful that I can overcome this.

My own hypothesis: Researchers looking at lifetime prevalence in those who parent children with autism spectrum disorders suggest that approximately 50% engage in some form of stress eating.

My own little SIB.

I'm imperfect.

I'm imperfect. 

There. I said it.

I'm totally guilty of flooding facebook and instagram with pictures of my kids {because they are really, really cute} but with the pile of laundry cropped out, and a filter that makes my carpet look Valencia, not Vomit.

But I also like to keep it real. Therefore, I think you should know that the ABA therapist says talking to Waylon in a calm voice will get the best results, but I yelled a lot this morning. I know it's not going to "get the best results", but I'd had it.

And I said it was going to be ok if Waylon didn't make his First Communion with the other kids his age, but then I bawled like a baby all the way home from the First Communion Mass.

Guess what? I'm imperfect.
Sometimes you've got to take your tiara off, Princess, and scrub that vomit up out of your carpet when your hubs is out getting crazay at a bachelor party (and by crazay I mean fishing and throwing horseshoes) and you don't want the house to smell like curdled milk all weekend. Sometimes you've got to count backwards from ten and put a smile on your face and put a shirt on your kid for the sixteen thousandth time in ten minutes, and then sing Kumbaya while you hold that shirt on like a straight jacket the whole way to the minivan. And sometimes you've got to swallow your pride and say "God loves Waylon just the way he is. First Communion or not. And I didn't have to buy an overpriced suit and rosary this year. Boo-yah."

Accepting imperfection can be a challenge. But I think this is something that might be a little easier for moms of kids with special needs. It's like we don't really have a choice: Junior only wears camo swimming trunks right now, so the family photo is going to be mismatching this year. OR, it took us twenty minutes to get from the garage door to the carseat, so we're going to miss the readings at Mass. (Um, this happens to us EVERY SINGLE WEEK. Probably more of a sin than an imperfection).

So moms, special needs or not, I'm asking a favor- DON'T GET ATE UP WITH PERFECTION. Just try to not be so hard on yourself for a while. I think you'll eventually find that it's okay for your family photos to be mismatched. And it's okay to lose your patience every now and then. And it's okay to have gross carpets. Because that's life.
Can you live your life with #nofilter?

And you know what? If you choose your battles wisely, you can stop worrying about your carpets, and start worrying about having enough time to play with all the kids before bedtime.
And that's the kind of life that's perfect.

......................................................................................
Last week Waylon's therapist called to let me know he was pooping turquoise. Dead serious.
"There were blue cupcakes at the support group meeting last night," I said without hesitation, "and we let him have three. Oops."
His response- "Good!  I was betting Play Dough. Cupcakes are way better."

......................................................................................

 Disclaimer: This idea of living life with #nofilter is strictly metaphorical. There is no way that I am in a position to begin detoxing myself of instagram filters. Either I hire a carpet cleaning man (who would have a coronary when he walked in) or I continue to Valencia the crap right out of my photos.
Kapeesh?

Every single thing we do

Hey girl. I just love love love that you messaged me and asked for input on your paper about autism. Sorry it took me like forever and a week to get back with you. Could you just tell your professor that getting an hour of time from an autism mom is kind of like milking a chicken?

So anyways, you asked what I know about psychosocial rehabilitation. Can I tell you the truth? Nothing. Nada.

We have done years of autism therapy – speech therapy, occupational therapy, DIR/Floortime, TEACCH, ABA. We have read and written Social Stories, been to social skills classes, we've used PECS, and learned about verbal behavior and pivotal response training. I pride myself in the number of books I've read and the hours I've spent researching nearly every evidence-based autism therapy. And you want to know about psychosocial rehabilitation?

So I googled it. 

Turns out, there's an overwhelming amount of stuff out there on psychosocial rehabilitation- and I am like crazy-tired. The best my blurry eyes and foggy brain can tell, it sounds like psychosocial rehabilitation is not really any one specific type of therapy- but instead, it is a general idea of how to encourage people with autism to keep developing and learning, and thereby enhancing their overall quality of life (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1636121/ ). (Are you getting nervous about asking for my help yet?)

So then I got to thinking- wait a minute- isn't that every single thing that we do? Every single thing- from his Picture Exchange Communication System (PECS) when he was in preschool, to Social Stories about how to get through the grocery store, to big things like his ABA (Applied Behavioral Analysis) therapy center... All of it is so that we can help Waylon continue to develop and learn and thereby enhance his quality of life. 

Someone told us once, that no matter how severe your child with autism is, if you can teach them one small skill- you have given them a small slice of independence and thereby enhanced their quality of life. For example- if Waylon has to live in a group home someday and relies on someone to fix his meals, and help him bathe, and pay his bills- if he can tie his shoes, he has the independence to go outside whenever he wants. So maybe part of Waylon's psychosocial rehabilitation between now and adulthood is teaching him to tie his shoes. Right?

Waylon will never stop needing support to help him develop and learn, to maintain his quality of life. So this means that Waylon (and the rest of the one in 68 kids with autism who will be adults someday) will need this psychosocial rehabilitation for their entire lives.

There was a very interesting series on dateline NBC last week about this- you should watch it- http://www.nbc.com/dateline/video/dateline-april-12-2015/2857335. Get your kleenexes ready.

You know what? I'm not quite ready to think about Waylon, the adult. But I suppose it's important to get ready. Because when the time comes (which will be sooner than I realize, I'm sure), I want the world to be ready for Waylon.

I hope this was helpful, even if it was forever and a week late. And I hope you get an A! PS- I think I'm going to turn this into a blog post, too. Win-win!

Thank you for doing your part to help get the world ready for my son.

Lindy

When things are different.

Thursday, April 2nd, 3am: The first thunderstorm of the year. Waylon is awake. I make sure the door alarms are on and go back to sleep on the living room recliner.

5am: Thunder is rattling our windows. Waylon is sprinting back and forth in our living room with his ears plugged. I already know the unfortunate truth: the thunder and rain are the first of many things today that are going to be different. Lord, help us through this day.

6am: Waylon puts on his socks, shoes, and jacket. He paces the living room floor, "school, school, school, school".

"Not yet, buddy. Today is going to be different. First doctor, then school". Does he understand?

He went out to the garage to wait in the van.

7am: I clicked the baby's car seat in next to him in the van. To put it lightly, he is pissed. (The baby does not usually come with us). We have to be at KU in exactly one hour and 30 minutes. I strategically back the van out of the garage while blocking Waylon's meltdown blows from baby Lucy, who just wants to babble and jabber and play with her shoes.

7:15am: Of course, we are stopped for a freaking train. Waylon plugs his ears as it passes, "no train, no, no". Then he puts his sunglasses on (yes it is still raining) and chills out. "The train makes me mad, too, Waylon." Maybe I need to get myself a pair of those sunglasses.

8:15am: When traffic slows to a stop (stupid JoCo rush hour), he whines "No, no, no, no" between quick shallow breaths. The highway is for driving, you know. This is different. We're supposed to be on the sixth floor of the doctors building at KU Med in 15 minutes, and we're sitting in a parking lot on I-35. Now both of us are hyperventilating. And we really need to make it to this appointment. 

8:30am: We hurry out of the parking garage and into the doctors building. These stupid elevators. There are four of them, and they really tick him off. We push the button next to one, and never fail the one behind us opens. "No, no, no open door. No open door!" People get off, people get on, Waylon yells, "No open door! No open door!" He tries to pry open the door beside the button he pushed. When that doesn't work he just beats on it with closed fists. The open elevator leaves us. I think I need a t-shirt that says HE HAS AUTISM NOT A THIRD HEAD.

8:40am: We are finally off the elevator and on the sixth floor (literally). There is a really long hallway between us and the child psych registration desk, and try as I may, I cannot get him off the floor.

So I do a quick Moby wrap and attach Lucy to the front of me. I am now wearing one child and dragging the other down this stupid hallway. At least we're on the psych floor now. Surely they understand?

8:45am: We are 15 minutes late, but we've made it close enough to the registration desk that I can tell them his name, "If she'll still see us" I add. He is totally wigging out now, and I've had it. I point to the floor and say, "SIT". I meant for it to come out of my mouth sounding very stern and serious. But the truth is, I'm choking back tears and my voice is shaky and I sound like I'm on the verge of a nervous breakdown. (Maybe I am?) At this point, I am certain that either Waylon or Lucy will be taken away from me today.

And then, the most caring and patient child psychologist in the whole entire universe comes out to meet us in the hallway. She says in her sweet little entrancing voice, "It's going to be okay". (Oh thank God).

9:50am: Waylon walks out of the doctor's building like a perfect gentleman. There are no other people at the elevators, so we just wait patiently for the door next to the button to open. Back in the parking garage, I move Lucy's seat to the back row, where she is safe to babble and jabber and play with her shoes. She seems okay with that.

10:30am: Waylon is not real happy that we've arrived at his therapy center (but I am). He yells at the staff for a while, then heads back to start therapy. His lead therapist sits down with me with some graphs of data they've collected, and throws out some big words that mean We're Making Progress But Not Enough. And I smile and nod and then Lucy and I head back to the van.

These sweet people (who get paid a lot, but not enough) specialize in behavior modification. Before I pull out of the "Autism Families Only" parking spot, I say a little prayer of thanksgiving for his therapists, and asked the Lord that He might help them modify a whole lot of his behaviors before 4:30 this afternoon. Amen.

thankful

Rejoice always, pray without ceasing, in everything give thanks; for this is God's will for you in Christ Jesus. 

1 Thessalonians 5:16-18

But sometimes it's hard when my prayers are so heavy, Lord. How am I supposed to give thanks?

We pray for our friends down the road whose preschool grandsons shouldn't even know that there are such things as chemo and radiation. 

We pray for the high school football player from one county over, who's at St. Jude's right now, starting an aggressive cancer treatment plan.

And our hearts are heavy and our prayers are continuous for a local community, who held a prayer vigil last night for a toddler who never got to take her first steps.

I wish I didn't have to be, but today, Lord, I am thankful for autism.