A conversation with T

I just had the following conversation (yes, I said conversation or "an informal talk involving two people or a small group of people") with T -

Me (walking into the room where she is "watching" Phineas and Ferb or, to be more exact, rewinding the same 10 seconds of a song over and over): "Hey, whatcha doin?"

T: "Watch Phineas and Ferb?"

Me (dumbfounded that I got an immediate response): "You are?! Do you like Phineas and Ferb?"

T: "Yes!"

Wow... no prompting needed.  Those little surprises are awesome. :)

That is all.

Black cloud

Tonight was a tough one.

We've had some difficult discussions before: the "Your sister has autism and that's what makes her different" talk, the "One of the things that makes you you is that you have Aspergers" talk and tonight the "Mom, I just wish I could be like everyone else" talk. Is there anything that pierces a mother's heart as much as knowing your child is hurting and not being able to do a damn thing about it?

In this moment, I'm ashamed of myself. Even as her mother, her advocate, the one who loves her best, I think I was naive or, better yet, ignorant enough to hope that her Aspergers would keep her from the awareness of other peoples' views of her. I honestly let myself think she could be just robotic enough that the sideways looks and giggles wouldn't penetrate her psyche, or so smart that she just wouldn't care. 

Ignorance is truly bliss. She teaches me everyday, it's just that some days I don't want to learn. 

I've heard it said that having children is like having your heart walk around outside your body. I don't know if I've ever felt that as strongly as I do right now. 

I know she'll be okay. She's such an awesome girl. Kids are resilient, right? Things get easier, right? For now, that will get me by. That's what I'll tell myself so that I can sleep tonight.

Gertrude goes to the "Happiest Place on Earth"

Last fall my family took a trip to Disney World in Orlando, FL. By my family, I mean myself, my husband, our two daughters, my mother and, of course, Gertrude. After our LONG drive (flying is not an option when anxiety-ridden Gertie comes along) we made it to our super-fun Finding Nemo room at Disney World and met up with my sister, her husband and their three children who traveled from Houston, TX.

Though we had lots of fun, things rarely went as planned, so here are some lessons I learned:

Take things at your own pace. Is it worth seeing everything and riding every ride if the majority of your family is miserable? Though it would have been nice to spend the entire vacation with my niece and nephews, our families are very different. My girls are as timid as my sister’s children are adventurous. Where Gertie requires time to warm up to things, the Casarez family wanted to get the most out of their time at Disney World. Luckily, my family is very understanding and knew we had to find our own rhythm. Once we stopped stressing out about what we thought we HAD to do or see, we were able to really enjoy what we were doing in the moment.

Pick your battles. Did we eat healthy, well-balanced meals while we were on vacation? No, but that just wasn’t a battle I wanted to fight. With all the other issues we had to deal with, as long as no one became dehydrated or malnourished, I knew we’d be just fine.

Control what you can, let go of what you can’t. A sea of people and crowds of tourists all wanting to see and do the same things at virtually the same time is something you just have to deal with at Disney World. Is it fun? No. Certainly not for someone like myself who can hardly tolerate your garden-variety “superstore” on a Saturday afternoon. It was definitely a needed lesson in learning to go with the flow.

Remember why you went on vacation in the first place. It was to spend time together in a different environment, having FUN! It took a minute for our family to adjust, but once we did we had so many new and fun experiences together. Gertie loves her routine, so anytime we found ourselves doing something new and enjoying it, those were moments to celebrate!

People (and not just children) will stare and judge, but that is their problem. I think that’s pretty self-explanatory.

Hope for the best, but plan for the worst. This is just life in general with Gertrude. “The best laid plans of mice and men...” and all that.

Disney World is not necessarily the “Happiest Place on Earth” for everyone. Certainly not for Gertrude. It is an assault on the senses for even a neurotypical person.

We are not the worst parents in the world! Even though we have children on the spectrum and frequently dealt with meltdowns and tantrums (and I’d like to say they were all from our daughters, but that would be a lie), we found that we were certainly not alone. Everyday you would find children (and their parents) behaving badly. We have all had those not-so-proud moments when our child pushes our very last button and we snap. Parents angrily grabbing hands, upper arms and even ears, was a relatively common sight at Disney World. Moms frequently barked at dads and vice-versa.

And probably the most important lesson for me, personally:

Enjoy the little things. My husband and I had several “what were we thinking?!” moments while on vacation. When considering all the things that our daughters struggle with (our youngest doesn’t even enjoy our yearly small town carnival, so why would we think she’d like Disney World??) it seemed like a ridiculous choice to bring them to such a crowded, noisy and unfamiliar place. Truth be told, we may have been slightly guilty of projecting our childhood dreams of the perfect vacation onto our unassuming daughters... maybe. But here’s the thing, I realized during our trip that we are a family that has to enjoy the little things. Will our daughters have fond, life-long memories of that first moment when they walked into Magic Kingdom and saw Cinderella’s castle? No. Unfortunately that was a really stressful and overwhelming moment for us. But what they still talk about is the fun pool and splash pad on one side of our hotel and the lake on the other side. And the giant seagull sculptures that sat on top of the building and said, “mine, mine, mine” every hour. And the huge chocolate cupcake with purple frosting that came from the restaurant at the hotel. And the rest area in Tennessee where we learned a little about the Civil War and took pictures sitting on a turtle sculpture. These aren’t the stereotypical memories that you think you’re kids are going to take away from a trip to see Mickey at Disney World, but they are my kids’ memories.

And why would I ever think there would be anything typical about a vacation with Gertrude?

Let's call it: Autism Acceptance Month

When you deal with special needs children, you are always measuring progress, whether that be the personal things you want to see your child accomplish or the educational goals you set with the school team every year. In preparing to write another “Autism Awareness Month” article, it dawned on me that my family has made progress in another way this year.

A year ago at this time, I wrote my first Gertie article for the newspaper. It may not have seemed like much at the time, but for my husband and I, it was not an easy decision to “out” ourselves as an Autism family. Don’t get me wrong, we are not ashamed of Gertie, but we didn’t know if it was right to put our children’s stories out there and risk them being judged or treated differently. A lot of families feel it’s no one’s business what special needs or learning disabilities their children struggle with, and that’s okay. There are a lot of privacy issues that come in to play with special education and there is a reason for that. Unfortunately, there are a lot of negative people in the world who simply don’t understand what it is to live, learn and love with Autism or any other special needs for that matter. Negativity comes from a lack of understanding and this is the best way I know to help fight that for my daughters. We feel strongly that we need to advocate for our children and decided that in our case it was necessary to explain what it’s like to have Gertrude in our family. We welcome questions and have so appreciated all the people who have come forward to tell us about the person they love who lives with Autism.

As important as Autism Awareness is, we are ready to move on in our journey to Autism Acceptance. I guess I want to know that we won’t always have to be shouting from the rooftops that Gertie is here to stay, but that someday it will just be okay... no big deal. We won’t have to explain why our children struggle like they do or require the support that they need everyday. It will just be accepted and understood. That’s the world I’m looking forward to. I don’t feel I need to change my children, just help them to progress - much like any other parent feels about their kids. Of course I want society to be educated about the spectrum of Autism, because ignorance breeds fear. I simply look forward to a day when the majority of the ignorance and confusion is gone and we can all just accept and love our children and our neighbor’s children as they are.

Because sometimes you just have to laugh :o)

This is my friend Robert. He loves to post videos on YouTube and is becoming quite the filmmaker. My sister  (his neighbor, or "6307" to Robert) first introduced me to his work after he confiscated her iPhone during a get-together and she found a video of him on it. He frequently reminds her of her "Taytie Tot" (my youngest daughter) and she knew we would immediately recognize the "Yo Gabba Gabba" bit in the first video. He shares a variety of different videos on YouTube, so these aren't his newest creations, but I wanted to share these videos because, as his mom said, "sometimes you just have to laugh".

Let me be clear: we are NOT laughing AT Robert. As parents, there is nothing wrong with getting a kick out of your kids doing things that are cute whether they have autism or not. What I love about these videos and one of the reasons I wanted to post them (aside from the fact that he is too cute for words) is that whenever our kids find something that engages them and helps them express who they are and what they enjoy, we need to celebrate that. I think it's awesome that Rob found something he loves to do and that it connects him to the "outside world".

So I say, film away, Robert - I will be watching and expecting an invitation to your first big movie premiere :o)

Happy Double-Digit Day!

My oldest recently celebrated her Double-Digit Day. Yep, that's her in her jammies. Just woke up (hence the hair) and is all kinds of excited to be 10. In honor of her, I'm sharing a video of one of her favorite songs, Firework by Katy Perry.
I remember hearing recently that Katy sang this song with a young autistic girl at a fundraiser for autism. I didn't think much of it at the time, but as I decided to post this in Avery's honor, I watched it and it made me cry. As a mom of girls on the spectrum, I appreciate anyone who lends their talents to raising awareness of autism and the good that can be done to help kids like mine not just reach their potential, but express themselves as the individuals that they are. Something that us "neurotypicals" often take for granted.
Anyway, I find the lyrics of this song to be so true for my girls - they are definitely fireworks in their mama's eyes, "even brighter than the moon, moon, moon..."

Our Introduction to Gertrude

When you hear or read of people discovering their children have autism, there is almost always an earth-shattering moment when they hear a doctor say, “I’m sorry, your child has autism”. For my family, it was very different. There was no specific moment of shock, no one person who told us that our lives were going to change... much less drama than you often hear of. It was very gradual. I happen to believe that my God knows me well and knew that, were I to be blindsided all at once by such life-changing news about my children, I wouldn’t have been able to handle it.

When our youngest daughter was 8 months old, she began to have what we now know were seizures. Neither my husband nor I have any family history of epilepsy and I was completely unaware of any seizures other than grand mals, so when our baby began to fling her arms and legs out like a startle or Moro Reflex, I had no idea what was going on, but I knew it wasn’t right. Once we got the diagnosis of a seizure disorder and began treating it, we didn’t know what we were in for. She was watched closely by a pediatric neurologist and her regular doctor, but they couldn’t tell us in that moment how she would be affected. In the research I did on Infantile Spasms (her diagnosis), the prognosis ran the gamut - some children became seizure-free and led perfectly normal lives and for some, the seizures proved to be a sort of warning sign for more adversity to come. As our daughter grew, we realized she was developmentally delayed, but it wasn’t until she was in school that we finally decided we were dealing with Gertie. 

We knew when our oldest daughter entered preschool that she was struggling with her new environment, but shrugged it off, thinking she just had to get used to going from being home with Mom and Little Sister to a room full of noisy three and four year olds. As time went on, we could see that she was not getting acclimated to things. She would cry and beg not to go and once there, she didn’t participate much and would plug her ears the entire time. It’s very difficult to function, let alone learn, when you feel compelled to keep your fingers in your ears. We had noticed that specific sounds, such as the Happy Birthday song and the vacuum would send her into hysterics - even to the point of getting physically sick. We were definitely perplexed by it, but found ways to rationalize it to make ourselves feel better. Luckily, our younger daughter’s Occupational Therapist through Early Intervention happened to be at the preschool our oldest was attending and observed her behavior there. She came to us and told us that our daughter was not just being a stubborn or shy preschooler, she was dealing with some very real sensory issues. There were sounds and situations that her system was not able to process in the same way that most kids could. That was our introduction to Gertrude.

 Our oldest daughter switched to the school-based preschool where she received some extra support and made excellent progress, but as time went on, we determined that she was dealing with Asperger Syndrome. For those unfamiliar, Aspergers is often considered a very mild form of autism or “high-functioning” autism. I tend to think of Aspergers more as its own disorder - sort of a distant cousin of autism. People with Aspergers or “Aspies” as they may refer to themselves, are of average to above-average intelligence, but they have difficulties with the social part of life and usually have pretty significant sensory issues. In order to do it justice, I’ll wait until another time to better explain Asperger Syndrome.

There are so many red flags for autism that you hear about: lack of eye contact, atypical play behaviors, difficulty with communication, but the thing is, not everyone dealing with an autism spectrum disorder shows all the “typical” symptoms. Autism spectrum disorders are so variable that, “if you’ve met one person with autism, you’ve met one person with autism”. For a long time, we didn’t feel our youngest was dealing with Gertrude because she was so affectionate. She loves physical contact, if it is on her terms. And for those with Aspergers, the red flags can be so much more subtle that it’s difficult to tell that they are any different at all sometimes. Someone asked me the other day if I believed there was a cure for autism. As awesome as that is to consider and as much as a parent like myself might want to believe the stories you sometimes hear, I don’t think a “cure” is possible. Personally, I think to insinuate that there is some kind of life-long remedy does a disservice to those struggling with autism everyday. What I believe is that Gertie is always present, just not always in control. If we give individuals with autism all the proper tools and the people around them are supportive and kind, they may appear to be cured, but they have to work very hard at it.

 I guess my point is, autism is not going away. It wasn’t easy, but my family has learned to accept Gertie and we hope the world around us can, too.