The Good, The Bad, and The Ugly!

Cruisin' in Daddy's  Jeep

Spending time with Izzy is one of my favorite things to do. From our morning car rides to school jamming out to The Greatest Showman to our evenings spent sitting on the couch reading, those are some of the best parts of my day. Traveling with Izzy is another one of my favorite things. Greg and I love to show her new places.

Most days are really good, (you see lots of those good moments on my highlight reel!) and I cherish those good times. During the school year, I am so thankful to have wonderful teachers who will text, send a quick email, or pop into my room after school to share about Izzy. Often times, though, those conversations are about an obstacle.

I’ll never forget when Mrs. Beeman, Izzy’s kindergarten teacher, shared with me that Izzy said, “Sarah* is jackin’ around!” OMG! I was mortified... however, she used that language in perfect context, so I was a little proud, too. Sarah* really was jackin’ around! More often than not, though, Izzy's struggles are much more serious.
*Name changed to protect the sweet, innocent little girl who was jackin' around. LOL!

Izzy & Mrs. Marshall 💗

Izzy & Miss Robin 💗

It’s hard for Izzy to follow the social norms at school. Sitting quietly and working has never been her thing! However, with meds, a behavior chart, and in-class support, she is able to spend the majority of her day in the general education classroom. She also learns in a small group setting in the resource classroom. Have I mentioned that we are blessed with incredible teachers who understand and go the extra mile for Izz?!

 We learned very early on that Izzy's autism includes sensory processing disorder. She doesn't process the world around her like others do. This plays a part in how she views her body in space. For example, leaning backward in a dentist chair freaks her out. Also, Izzy’s body needs sensory input; her body needs to be stimulated in different ways, so she can better use her body. Swinging at recess is one way that she gets this input. Izzy also has a hyper sense of hearing. It is amazing how well she can hear the tiniest sounds. It's actually really cool, but it can pose quite a problem, too. There was a time when I woke up early on Sundays to go grocery shopping because I HAD to go alone. I needed to go alone for some peace and quiet, but I also couldn’t take Izzy with me. Every trip to the grocery store was a nightmare. The littlest thing would set her off, and I’d leave without getting a thing. Or I’d be the parent with the temper tantrum kid trying to keep her calm. To this day, it's hard for me to figure out exactly what bothers Izzy in this type of setting, but, now, I think that a lot of it was due to all the different sounds in the store. Think about it: her brain processes the sounds separately... she can hear the beep-beep of the cashier scanning each item, multiple conversations, and the rolling wheels of each shopping cart. Thank God for the Kroger ClickList! It is my lifesaver. Short trips to the store are possible now, but it requires a pep talk before we go inside.

Izzy thrives with structure, and if something is not going according to schedule, that really rocks her world. At school, she follows a schedule for the day, and at home we use the Choiceworks app. It is a visual schedule that I can edit for Izzy’s needs. For the summer, I created a morning schedule, a work schedule, and an afternoon schedule. The schedule has a visual and an audio component. This has allowed Izzy to see her tasks and be independent in completing them. Choiceworks also has an awesome calendar app. (They are not free apps but are well worth the price!)

Izzy - one year old - 2009

While I know that many of Izzy’s struggles are because of autism, to be honest, I don’t know the difference between a typical child's behavior and the behavior of a child with autism. I’ve never really known if what she’s doing is “normal”. Izzy is just now approaching the age group of students that I’m most familiar with, so I'm recognizing more of the differences. When Izz was little, I knew that it was odd for a baby to cry all night long... literally, all night long. Izzy was hard to soothe as a baby; a diaper change and a bottle helped very little. I know that most five year olds don’t bite their friends; Izzy did. Crying instead of speaking is unexpected; Izzy often communicates in this way. Clipping Izzy’s toenails is an event at our house. It's her sensory processing that gets in the way, and it takes an act of Congress to get it done!

Through all of this, I’ve learned that what looks like defiance or a temper tantrum is often Izzy trying to express herself. She doesn’t have the words to say, “I’m frustrated about...” or “That made me feel...” She often says "no" to adults. We know now that it’s not that she’s being defiant... it’s that she is trying to tell us “that’s hard for me,” or “I don’t like the way that makes me feel.” She just recently found the words to tell me that the sound of the brush running through her hair really bothers her, and that’s the reason why she fights me when I have to brush out the tangles.

RDR Final Run - May 2018

On the other hand, Izzy does so many things that are age-appropriate; she loves watching videos on YouTube, doing the floss, collecting squishies, and shopping at Justice. She's completed five Read, Deed, and Run marathons (reading 26 books, performing 26 good deeds, and running 26 miles over the course of a school year). She calms me down when I'm feeling stressed out, and she has the wittiest sense of humor. She tells little white lies, talks back to us, and sleeps late. Sometimes, I struggle to see these things; I am thankful for those who remind me of these things she’s doing that are “normal”. There was a time when I thought everything was because of autism!

Some days are just bad, but the biggest parts of most days are good. Greg and I have to remind each other every day to stay calm and be patient. We’ve learned that the calmer we are, the calmer Izzy is. While these are the battles we are facing, I realize that it could be worse. Each day I am reminded of what others are going through, and I thank God that our battle comes with a sweet little girl to love!

As for the ugly… I’d say ugliness rears its head when I overhear or see judgment from others. At school one day, I heard a kid in the hallway say, “Eww… I touched Izzy’s hand. I have to go wash my hands.” My heart broke. My heart broke for the child who said these unkind words, and it broke for the child who was listening to her words. This lack of acceptance is what unnerves me. This is the ugly. There is no behavior that Izzy could exhibit that is as ugly as this. I could tell other stories, but my focus here is not on the ugly; my focus is on Izzy and rising above the perception that is out there. One thing I love about Izzy is her acceptance of others. She will befriend anyone and everyone. I’ve seen her get a smile out of the grumbling, negative lady who is at speech therapy with us each week. Izzy talks to her every single week! At first, she could barely get her to look her way. Now, they have full-blown conversations! Izzy has true joy in her heart. It is my hope that Izzy’s kindness and joy will be contagious and others will learn from her instead of being disturbed by her.

So what do we do to combat the ugliness? Well, each of us has a responsibility to model the behavior we want from our children. I know that I am guilty of judging others. Just the other day, I spouted off something about someone who was annoying me. Izzy caught right on and asked question after question about the situation. Children are sponges. They soak up every little thing we say and do. I try to be much more cognizant of my actions and words, and, boy, is it a constant struggle! However, every little effort makes a difference! And I know that kids will be kids and say unkind things. They are learning how to be social and understand others who are different. If we are lucky enough to overhear these rude comments, we're provided with a teachable moment. Not too long ago, we were in Buc-ee's (best. gas station. EVER.) and Izzy saw a little person. She laughed and pointed. This really surprised me; Izzy has a friend at school who is a little person, and I never would have expected her to do this. I grabbed her arm and took her to the nearest aisle and said, "You are different, too." It is so, so important that we seize the moment and teach children empathy, kindness, and respect.

Now, I know the story you really want to hear is what I said to those two little girls. However, I'll take that teachable moment to the grave... yeah, whatever!

Stop! Evaluate and Listen!

We celebrate Izzy’s differences, yet we also recognize the need for support. Of course, Greg and I help Izzy as much as we can, but it is essential to have specialists to guide us. This is why we regularly see a speech therapist and psychiatrist. The support Izzy receives at school is essential for her continued progress. I am thankful for teachers and other parents who have shared their experiences and strategies with us. Because of that, we can try new things with Izzy and help her be successful.

Did you know that it’s your right as a parent to request an evaluation through your school district? If you suspect that your child has a learning disability, is emotionally disturbed, or is on the spectrum, the school district will conduct a free evaluation. This is provided under IDEA (Individuals with Disabilities Education Act). Provide a letter in writing requesting a full evaluation to your school's principal. Additional paperwork may follow to get the ball rolling. My philosophy has always been that it’s best to do it, and if nothing else, rule it out. That’s what we've done with Izz. We've had her ears checked, her eyes checked, changed her diet, tried various therapies... and we're still trying to figure it all out. An evaluation is the first step to intervention. If you’re like me and you’re unsure about your child’s behaviors or academic progress, consider an evaluation... even if it’s nothing more than to just check it off of your list. The evaluation can provide you with answers or peace of mind, regardless of the outcome.

More Information About IDEA & Parent Rights to an Evaluation