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.

There's as hole in my boat, dear Gertrude

I've learned that I am a visual person. I need to "see" things to process them and fully understand what I'm dealing with. I guess it's for that reason that I love metaphors.
Here's the best way I've come up with to succinctly explain to other visual thinkers like myself what it's like to be a family in our situation...

Having kids with special needs is like being out in the middle of a lake with your family and finding that your row boat has a hole in it. As much as you'd like to stop and enjoy the scenery and experience, you have to start bailing water or everyone is going down. When you look at the big picture, you realize that in order to save your kids, you have to teach them to swim and how do you concentrate on teaching them to swim when you have to try to plug this hole? During all the chaos, sometimes another boat might come by and offer you some assistance for awhile, but their boat is already full and they have to keep their own passengers afloat. Sometimes you find that the other parent has stopped to fish for awhile, leaving you to deal with everything. Other times, you are the parent who just needs a moment to catch your breath. It really is a team effort. All the while, you love your family and enjoy being with them out on the lake, but you wonder how you can all have an enjoyable time, at the same time, and row back to shore.
And did I mention that I don't know how to swim?

Something in the way she moves

I'm a James Taylor fan and I've loved the song "Something in the Way She Moves" since I was a kid but when I had my two girls it took on a whole new, much deeper meaning.
So this post is just because I love my girls...

Autism or not!

So recently my oldest daughter Avery informed me that she would like another sister. (And by that a mean an additional sister, or third child in our family. I made sure to clarify that she didn't mean she'd just like to trade in the one she has - which wouldn't have surprised me.) Avery asking me to have another baby was a shock for many reasons. For one, she can't tolerate the sound of babies crying - it has become one of her quirks. For another we have told her we have no room for a cat in our house until we get the basement redone, let alone another human being - she already has to share a room with her little sister Taytem. But mostly I was surprised because she is not usually her little sister's biggest fan. We went rounds this summer about how she feels that we treat Taytem differently than we treat her. Well, we probably do. As I attempted to try and explain why, Avery got very angry about the fact that her sister has autism and said she wished she'd never asked for a little sister. (I think in Avery's Aspie world, she thinks that we had a second child because she asked for one) She told me she hated autism. Okay, so do I sometimes. So, I reminded Avery of that conversation and asked her how she would feel if her new sister also had autism. "I just want another sister," she said, "autism or not!" That made my heart sing. Not because I'm planning to have another baby... that ship has sailed. Although it was always in the plan to have 3 children, my husband and I decided it would not be responsible of us to bring another child into the world. If we won the lottery, we'd love to adopt, but that ain't gonna happen.

Then today, after Avery had had a particularly good day at school and her sister had not, she was full of optimism and words of advice. "Well, maybe it's hard to be a first grader with autism, Mom," she told me. You can't tell me this kid lacks empathy...  :o)

Kindergarten Graduation!

For most parents, Kindergarten Graduation marks the beginning of many years of educational and social milestones for their kids. It may be the first bittersweet moment of realization that your child is really growing up and becoming independent. Usually Mom gets misty-eyed seeing her baby wear the miniature version of the cap and gown they will be donning in another 12 years and Dad has a moment of pride when he sees his child accept his/her “diploma” - proof that first grade is on the horizon. For my family, it was all these things and so much more.

For our youngest in her struggle with Gertrude, sensory issues have made so many situations nearly impossible for her. It is common for autistic people to have sensory difficulties; meaning what we see, hear, taste, touch and smell can have a much more profound impact on them than any of us realize. Consider for a moment what it takes to walk into a room full of people. You see dozens of people wearing colors and patterns of all different types, they all have their own scent, good or bad (and more is not always better, ladies and gentlemen), everyone speaks in their own way - maybe booming loudly or sharply whispering, there may be food present which creates more smell issues along with some fear that you will be expected to eat that food, and the liklihood that you would get out of a room full of people without being expected to touch anyone/thing is slim to none. For a typical person who has experienced these situations frequently, navigating a room full of people is no problem. You might pause a moment before shaking someone’s hand, but realize you can later wash before you pick up and eat that cookie. The sound of someone’s voice may bother you, but you can move away or politely tolerate it until they’re through speaking.

For my youngest, we knew Gertie would make Kindergarten Graduation difficult, to say the least. Her team had been practicing with her for weeks. They would walk her through everything; from visiting the theater where the program would be held and where she would be sitting, to trying on the gown she would wear and practicing what she would say. But as anyone who has Gertrude in their lives knows, no matter how much you’ve prepared, anything can happen. The night before was the yearly Spring Program and after getting off to a rough start, our daughter refused to participate on stage with her class. Instead, she and her para stood completely out of sight of the large crowd and she did a little singing and a little crying. So, to be honest, my husband and I did not have high expectations for graduation. We entered the theater and, as usual, tried to find an inconspicuous place to sit - somewhere that our daughter would be less likely to spot us and would allow us a quick escape if she did. Usually if she sees us during a stressful situation, she lets us know, in no uncertain terms, that she is ready to go home! We watched the other kindergartners march in, so grown up, while the fifth grade band played Pomp and Circumstance, knowing our daughter was waiting from a distance until the band was through. As she walked on stage with her para (whom I like to refer to as “Fabby Ms. Abby”) we were surprised to see that she didn’t give in to the tears as she scoped out the theater full of people. She was not wearing the cute little mortar board that all the other grads were wearing, but we knew she wouldn’t be and that was okay with us. We have definitely learned to pick our battles when it comes to Gertie and hats are ALWAYS a battle!

As the program went on, we were shocked to see that our daughter not only tolerated it, but participated! She stayed in her seat (with the encouragement of Fabby Ms. Abby), hokey-pokied with the best of them and walked independently to the center of the stage to accept her diploma from Mrs. Cronin and Mr. Anderson. Any of these things alone would have made it a successful day, but undoubtedly my favorite moment of all and a memory I will treasure forever was when she walked to the microphone and said, “I’m Taytem Nye. In kindergarten I learned my patterns.” That was enough to send me into the ugly cry, rummaging through my purse for a crumpled old kleenex. I turned and looked at Grandma and then at Taytem’s life skills teacher who was nearby and we were all reduced to a puddle of tears, but so happy and amazed. Dad and Grandpa kept their composure, as most guys do, but I know they were equally as proud. In that moment, I realized how much Taytem had learned in kindergarten. Maybe not the typical kindergarten learning, but the progress she made throughout the year was obvious. Of course, all the prep work her teachers did and the compassion of everyone in the room helped make her successful, but Taytem made a choice that day not to let Gertie get the better of her. Taytem: 1, Gertie: 0 - at least for now.

For Teacher Appreciation Week

When you are the parent of a special needs child you quickly learn that although you may not feel qualified, people come to you with questions and you have a duty to educate the world around you about your child and those like her. Not everyone is interested because maybe they feel it doesn’t affect them, but in a world where, according to the CDC, 1 in 88 children has been identified with an autism spectrum disorder, we have to assume anyone could be affected.

I recently spoke to a mom who had some concerns about her child. Why does she seem different from my other kids? What do you think is going on with her? Who do I talk to? My answer comes from the experiences my family has had, so I encouraged her to share her concerns with her daughter’s pediatrician, as well as her preschool teachers and daycare providers. The familiarity teachers and care providers have with our children is second only to our own. I also told her to be persistent - if you run into someone who doesn’t take your concerns seriously, speak to someone else. Our kids rely on us to make good choices for their futures and we are their best advocates. As parents, sometimes we want so much for something not to be true that we are willing to overlook nontypical behavior. Yes, all kids are different and everyone has their quirks, but you have to trust your gut. If something seems off, it probably is. Differences can create tremendous fear in the beginning, driving loving parents to want to hide or justify those differences. But slowly, the differences become simple facts and you learn that’s just the way it is. You learn to accept the differences and even celebrate their uniqueness. I blamed myself for a long time because I was a stay-at-home mom and my kids didn’t get the same amount of social interaction that kids who went to daycare would get. But the reality is, “Gertrude” was there the whole time just waiting for the right moment to make herself known.

I can tell you from experience that early intervention is key in helping children with autism or other developmental delays. In our case, we were put in contact with Physical, Occupational and Speech Therapists through ESU10 who began working with our child before she was a year old - all free of charge. As she got older, she received visits from an early childhood specialist and at 3, began preschool. Ravenna is so fortunate to have a preschool within the elementary school. I cannot stress enough how helpful that was for my girls. As vital as doctors are, I would not hesitate to say that the help and support given by the educators and therapists in a child’s life are even more important. They impact the day-to-day lives of our kids and help them make progress beyond occasional check-ups and appointments.

For my family, in our daily struggles with Gertie, our relationship with the school staff is crucial. This week, May 7-11, is Teacher Appreciation Week, so I would like to take this opportunity to thank the teachers, paraeducators, therapists, administrators and support staff that impact my daughters’ lives every day. Sonya, Abby, Glenda, Korina, Renata, Cindy, Judi, Terry, Lindsey, Teresa, Liz, Haley, Sue, Paul and everyone else who makes my girls’ days a little brighter just by interacting with them - you mean so much to the Nye family and we appreciate you! And a special thank you to our leader Jamie... you have been like a member of our family and we will miss you more than we can say.

Gertrude, the unexpected family member

Okay, I'm totally new to this blogging thing. Behind the times? Probably. I recently started writing a column for the newspaper I work for about my family's experiences with autism and after receiving some really heartwarming feedback, my sister suggested I start a blog. I decided to start it out with the columns I have written so far, so here goes...

April is Autism Awareness Month

Gertrude, the unexpected family member

If you are on Facebook, you are frequently reminded that each month brings an “awareness” of something that matters to someone. October is, of course, Breast Cancer Awareness Month. May is Cystic Fibrosis Awareness Month. November is Alzheimer’s Awareness Month. April is Autism Awareness Month. October is Squirrel Awareness Month. Yep, seriously. Okay, let’s go back to Autism Awareness Month. This one is near and dear to my heart. My husband Travis and I have two sweet, beautiful, entertaining daughters and Autism is the fifth member of our family.

In an effort to make this easier to understand and hopefully, more entertaining, I’ll refer to this fifth member as “Gertrude”. Gertrude is with us all day, every day. She joins us for every meal, demanding specific foods - nothing too hard, too hot or at all different from the usual menu. She goes to school with us everyday, usually ready to work hard but some days testing those who have to deal with her. Gertrude can make friendships difficult. Kids don’t always understand her odd behaviors and why she seems so different. She is sometimes the class clown and sometimes the one getting picked on. She is with us at every event we try to attend, usually creating anxiety and frustration for the other four family members, not to mention the population around us that we unintentionally annoy. Sometimes we convince ourselves that we’ve left Gertie at home, that we’re going to have a normal experience like everyone else, but inevitably, she pops up at the most unexpected times, provoking stares and embarrassment. She is always with us at bedtime, occasionally feeling the urge for a loud parade, complete with singing and dancing at 4:00 in the morning. But who doesn’t love a parade?

Like any member of the family, Gertrude is frequently a stinker, but is also sometimes helpful. She is nothing if not educational. Our eyes and those of our extended family have been opened to things we never would have given a second thought to in the past. For instance, I know far more about proprioceptive and vestibular input and their importance in the learning process than I ever thought I would (although don’t ask me to explain it). Also, communication occurs in so many different ways, not just verbally. Gestures, eye contact, physical interaction and sometimes telepathy can all get the same results a spoken request would get. Not to mention, I have more knowledge about dinosaurs, penguins and anything Backyardigans-related than any grown woman cares to admit.

While Gertrude has alienated us from some people, her existence has also created the opportunity for some wonderful and meaningful relationships for my family. We have been blessed with excellent educators, paras and therapists at Ravenna Elementary that have grown to become a part of our extended family. Many of these individuals have been involved since our youngest was a baby. The support we’ve received because we have Gertie in our lives has been heartwarming and allows us to trudge on when things seem too difficult. She’s also created an unusual sense of teamwork within my family. I think in most instances, we’re probably stronger and closer than your average family, all thanks to Gertrude. We now know that 1 in every 88 children is affected by an autism spectrum disorder, so on occasion, we run into another family dealing with their own version of Gertrude. Our familiarity with her allows us to be much less judgmental parents than we would have been without her. My motto has become, “A little kindness goes a long way”.

Some may think that having autism in your life is devastating and something to be pitied. The Nye family has found that a sense of humor is Essential, with a capital “E”. I can’t tell you how many times my husband and I have looked at each other and laughed in situations where we probably really wanted to cry or pull our hair out. Things that a “typical” family would take for granted, we celebrate: seeing your daughter feed herself, no matter how messy she gets in the process; going to a doctor’s appointment where your child doesn’t knock her pediatrician onto the floor; watching your kiddo do something as seemingly easy as riding a bike like everyone else. There is a sense of pride that families like ours have that others may never be able to understand. But that is one of the things that Gertrude has to offer and we think we’ll keep her.