Wednesday, April 2, 2014

World Autism Awareness Day, 2014 - You could say we're fully aware

Little Miss was diagnosed with autism just over two years ago, making today our third World Autism Awareness Day. In the years since that afternoon in March 2012, I've learned a lot about autism. One might say that I am fully aware.

I've learned that some days are good and some days are bad (and some days are very, very bad). There are days when Little Miss is on the ball -- she gets what's going on, learns at school, and keeps herself under control. And then there are days when she is so steeped in her fantasy world that I need to physically draw her out just to keep her safe. My hands are scarred from her pinches, my body is exhausted, and I've got two loads of laundry running just from accidents.

I've learned that there are professionals who really want to help and those who are just collecting a pay check. It makes me crazy to think that someone wouldn't want to do their best by these amazing kids, but everyone has their own agenda. We've worked with therapists and teachers who have gone the extra mile for Little Miss and those who have cut corners or sent her on her way with far less than she needed. But for those professionals who truly gave it their all, we consider ourselves blessed.

I've learned that Free and Appropriate Education (FAPE) doesn't always mean what's best for your child. As a matter of course, the district isn't allowed to provide the "best" education for your special needs child -- just an "appropriate" education. And oftentimes, families are stuck with a definition of "appropriate" that is far from satisfactory.

I've learned that "inclusive" is relative. Little Miss is included in Girl Scouts. The troop leader has even told me privately that Little Miss can do what she needs to do in order to participate to the fullest of her ability -- whether that's taking a break and running up and down the hallway or doing sit-ups on my lap during the lesson. But there is no specific instruction on how to adapt activities or lessons for girls with special needs. She is included, but not met at her level.

I've learned that special friends will appreciate my daughter and what she has to give. I received an email from a classmate's mom asking for a play date with Little Miss. When the mom asked her daughter what she likes to play with Little Miss, the girl's answer was simply, "we play Frozen. But I really like her for he heart."

I've learned to keep my efforts local. At first, I was everywhere -- trying to do everything and hoping to find some kind of support for my daughter. Like many parents, I turned first to Autism Speaks. I found good information there, but no real help. With time, I began to discover local organizations that were actually making a difference in my community. Milestones Autism Organization, Connecting for Kids, and others. It is these organizations who will receive my money and my support -- not the giants who spend far too much on their own salaries.

I've learned that my child will continue to surprise me. I fully expected Little Miss's disdain for all things academic to lead us to the battle of a lifetime when we started reading this year. And don't get me wrong -- there HAVE been battles. But she IS reading. She's not at the level of many of her classmates, but by God, she's reading.

I've learned that my daughter doesn't need awareness -- she needs acceptance. Little Miss is never going to be the same as her peers. She sees the world through a much different lens than you and I. A few weeks ago, an autism site on Facebook shared this cartoon by Lunarbaboon:

"Mess" by Lunarbaboon
That cartoon is what I try to remember when I see this:


It's my job, as Little Miss's mother, to encourage her, to celebrate her differences, and to nurture her strengths (even if her primary strength at the moment is making a colossal mess). The first step toward celebrating Little Miss's differences, unfortunately, has to be acceptance. Because, trust me, we are all aware that she is different at this point.

I've learned that love makes everything worth it. We struggle. We have bad days. I can't lie. But our lives are far from being a desolate, lonely existence. Yes... I was up at 4 AM this morning, but I was with a small, snuggly person who whispered in my ear, "I love you more than chocolate."

She is mine and I am hers. And that is what really matters.

Tuesday, March 11, 2014

Toys, Toys, Toys!

Crammed into a bag...
It has taken me a long time to appreciate how Little Miss enjoys toys -- and none of those ways are the ways I expected. When Little Miss was a few years younger, I tried desperately to get her to notice toys -- to love them and personify them the way I did. My brother and I gave elaborate personalities to our toys. Each one was treasured and we were devastated if they were lost. I still remember a miniature toy car that I named "Jo-Jo" -- it was accidentally lost while at play one day and I never could get back into our car adventures with Jo-Jo gone.

Instead of creating back stories, Little Miss prefers to cram all of her favorite toys into a bag or patiently pass them in and out of the door of her dollhouse. Even more confusing to me -- anything could take the role of a "toy." A scrap of paper or a used candy wrapper were just as happily adapted into Little Miss's play as the fancy, eco-friendly, Montessori-safe dollies I shelled out big bucks for.

The Loot: Part of a doctor set, a Rapunzel figurine, a plastic apple, two birthday cards,
my toilet paper roller, and empty roll of toilet paper, some tissues (thankfully unused),
a valentine, another bag (of course), and a metal case containing a whole other set of loot.

Did I grieve this? Yes. In a way, I still do. When I pictured myself as a parent, I imagined playing with my daughter the way my brother and I played. In my mind's eye, I pictured my daughter's delight as she investigated and played with the favorite toys I carefully saved for her. I never would have guessed that they would all be stuffed in a bag.

But once I got over my disappointment, I learned that Little Miss's imagination FAR outpaces her need for toys. She can tell herself (and anyone around who understands enough to really listen) the most amazing stories. No props or toys required. Since getting the hang of the whole talking thing, Little Miss has taken it and run. She loves nothing more than sitting on your lap and working out an improvisational story.

Is the bulk of it nonsense? Sure. But once upon a time -- in a galaxy far, far away -- the idea of a Jedi Knight fighting an evil emperor with laser swords was nonsense too.

Friday, March 7, 2014

Zoloft and Our Pediatric Feeding Disorder

A few of you, both here and on the Facebook page, expressed an interest in the progress on our feeding treatment (including our choice to use medication). Well, gather in and I'll tell it from the beginning.

As you all know, Little Miss has been a less than enthusiastic eater since the very beginning. I give you Exhibit A: Little Miss on her first birthday, looking at the frosting on her birthday candle like it is the devil incarnate. It's pretty much been this way the whole trip...


And we've tried everything along the way. Waiting her out, bribery, occupational therapy, messy play, specialized spoons, specialized diet. EVERYTHING.

What began as a texture/sensory issue grew and morphed over time. Little Miss learned to accept new foods and then suddenly -- as quickly as they appeared -- the foods were off the menu again. At the beginning of last summer, I was beside myself. Little Miss had less than 10 foods she would accept with any regularity and more than half of those options were pure junk food. Our pediatrician referred us to the feeding clinic.

Fast forward to August -- our first appointments. Little Miss devoured chicken tenders, green beans, and apple sauce like it was her job. I began to look forward to her feeding sessions because I knew that at least one day a week, she would get a decent meal.

And suddenly... the game was up. She fought. She cried. She struggled. And she flat out refused to eat anything the feeding team offered.

I let out a sigh of relief. FINALLY -- someone else could see what we were going through.

The team decided to try a systematic approach -- very similar to the approach outlined in Feeding Your Child with Autism. Six weeks in, we had no progress to show.

Things were starting to look very bad when the psychologist on the feeding team suggested approaching the problem with medication. She identified the root of the problem in a nutshell: Little Miss has built up a psychological block to certain foods.

In other words, she has decided (for whatever reason) that certain foods are no longer edible. Her autistic tendency to get very, very stuck on the way she thinks things ought to be makes it downright impossible to get past that block. In fact, chipping away at the block (as we were systematically doing with our feeding therapy sessions) was causing Little Miss a significant amount of anxiety. As a result of the anxiety, the block was getting bigger and harder to tear down. We were stuck in a vicious cycle and needed something to break it.

We met with a developmental pediatrician and decided that Zoloft was the best route to go. Like all SSRIs, Zoloft takes 4-6 weeks to build up to a measurable level -- and the first 3 weeks were MISERABLE. Maybe it was cabin fever and maybe it was side effects, but Little Miss spun like a top for three weeks straight. I almost gave up... and then something happened.

Rocking the horns... as you do.
Actually, it wasn't a sudden something... more of an incremental "how did we get HERE?" something. I looked up from trudging through my days and saw that Little Miss was eating diced peaches... happily. Diced pears... no argument. Suddenly, chicken nuggets ad hot dogs were back on the menu. I couldn't believe my eyes -- or my fridge.

As an added bonus, we've begun to notice fewer "THE UNIVERSE DIDN'T WORK THE WAY I EXPECTED IT TO!" meltdowns. A couple days ago, as Little Miss struggled with a doll that just wasn't going to fit in a certain outfit, I braced myself... and then let out a breath I didn't know I was holding when she calmly asked J for help.

Little Miss is still high-energy, impulsive, and sometimes downright crazy -- but she's also more laid back and more able to go with the flow. Will it last? I don't honestly know. But I'm going to run with it while I can. Four new foods in two months... this could be the start of a really amazing thing.

Tuesday, March 4, 2014

Is this thing on?

I really didn't expect to drop off the face of the planet in January and I feel like it's high time I apologized to you all for that. I keep thinking "I need to put something up on the blog" and immediately getting distracted by whatever else there is at hand.

And believe me, there has been a lot of whatever else at hand.

Image by Stoon / FreeDigitalPhotos.net
In January, we began a pharmaceutical treatment to see if we could help Little Miss with her eating problems. We've been on the behavioral route now since August 2013 and have seen very little progress. She is *almost* willing to eat apple sauce and will willingly eat diced peaches and pears, but in the mean time, has dropped her main meal selections down to two options: soy/dairy free macaroni and cheese, and soy/dairy free quesadillas.

Little Miss's big problem with eating isn't her ability to chew/swallow food or even a sensory issue so much anymore... it has to do with a behavioral wall she has built up that she cannot seem to cross. She has simply decided that certain foods are "no good" and refuses to touch them. and she is completely unwilling to be persuaded otherwise.

The doctor in charge of Little Miss's therapies suggested investigating an SSRI to help Little Miss get "unstuck" on her food decisions a little more easily -- and in late January we started that treatment. February was mostly a month of maniacal, all-hands-on-deck ups and downs, but I *think* we are *starting* to see some of the fruits of our labor. The apple sauce feeding sessions are still script-laden and dramatic, but where Little Miss covered her mouth and tried to escape a month ago, she's starting to settle down and "get it over with" now. We're feeling hopeful that our next steps may include getting back some of the proteins that Little Miss has lost since her feeding habits started to tank. Who knows... maybe hot dogs will be back on the menu.

Amid all of this, I took a part-time job. I have been writing on a volunteer basis for the most wonderful non-profit for more than a year now, and in January, they finally got the grant money to hire me on a part-time basis. My primary role is writing resource guides for special needs parents in Northeast Ohio, but I've also been helping out with social media odds and ends. The organization is called Connecting for Kids and they provide education and support to parents who have concerns about their children's' development.

Of course, there is still a teenager in the household and all the teaching challenges that brings -- plus we are working to help J stay with our family for another year. We began the application process to change her student visa over for the two-year stay and a plugging away at that as well as we can.

I hope to get back to writing a little more regularly, but if you don't see me around, you now know why. I have lots to tell you about Little Miss and how she is growing and changing and I've been trying to keep up with some of it on our Facebook page. If you have a few minutes, I hope you'll join us over there and say hi.

Friday, January 10, 2014

Comparison, Grief, and Moving On

Yesterday was Little Miss's first day back to school after her holiday break (a break which was extended by two days due to record-low temperatures). I was hoping that the teachers would ease the kids back into their much-needed routine and that Little Miss's homework folder would be empty.

Boy, was I wrong. I opened the homework folder and came face-to-face with three pages of handwriting homework and three-dozen Fundations flash cards. Halfheartedly, I took one of the cards out of the "mastered" set and showed it to Little Miss. The result was a 20-minute meltdown and the offending card being chucked across the kitchen.

The thing that really got me, though, wasn't the volume of the homework or the timing. It wasn't even the meltdown. It was the acompanying note from Little Miss's teacher:

There is only a small homework assignment which is a practicing uppercase letters worksheet. There is only enough room to print 2 or 3 letters on each line. Remember to stress quality letters, not quantity. Please see that your child prints the letters from the top. The last line is blank. Please have your child write their last name on this line.

This "small homework assignment" (writing 6-9 letters per page on 3 separate pages) amounts to about 3 nights' worth of homework in our house. Suddenly, my mind wasn't on Little Miss -- it was on her cousin, M. M is a couple months older than Little Miss and is in the same kindergarten class. M loves coloring and drawing and he could probably knock out this entire assignment in under 10 minutes.

My carefully-constructed walls began to crumble. In tumbled grief, anger, and heart-wrenching hopelessness. I walked right into the comparison game.

The "parenting chicken soup" writers (those people who manage to crank out happy, hopeful stuff all the time) always tell you not to compare your child -- that comparison is a "recipe for disaster." I get the warnings -- I really do. But the simple fact of the matter is that comparison happens. You can't make it not happen -- especially when you're watching your own child fall behind.

The difference is what you do after that comparison. Grief, anger, and heart-wrenching hopelessness are all real, human reactions -- and if you don't let yourself feel them because you're "not supposed to be playing the comparison game" you truly are setting yourself up for disaster.

Feel it and then share it.

I'm blessed to belong to a small group of special needs parent writers who have become comfortable enough to share anything with each other. We celebrate successes and mourn each new round of IEPs, specialist visits, and setbacks. We share that grief, anger, and heart-wrenching hopelessness -- we feel it together -- stir it around inside a proverbial "soup pot" of disappointments and raw emotions -- and then we set it aside. We move on together.

Facebook is full of great opportunities to meet like-minded parents. A quick search of "autism support groups" turned up more than 100 groups, pages, and communities. You can also find ways to connect with other parents through blogs, Pinterest boards, and Twitter. And don't forget in-person opportunities to meet other kindred spirits, including local parent support groups, church groups, and even local organizations.

The point of the matter is -- yes. It's OK to feel like crap after being sucked into the comparison game. It happens to all of us. But the key to turning it all around is all-too-often tied in to sharing your feelings with your support group. I know that, for me, it's meant all the world.

And hey -- support group peeps -- if you're reading this (and you know who you are) -- thank you.

P.S. Special thanks to Flannery at The Connor Chronicles for encouraging me to share this post. *fist bump*