MeMo: Roses Have Thorns
One day, I was at an appointment, doing the intake paperwork when the employee asked me a slew of questions. In the process of the conversation, it came up that my daughter had been diagnosed with Autism. The lady said, “I’m sorry.” I replied automatically, “Thanks.”
My breath caught in my throat.
What was my automatic reply?
Why did I say, “Thanks?”
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When I pondered it later, I think the lady was saying that she has empathy for my situation and what I’m going through must be hard which is why she said, “I’m sorry.” Not like she was saying more than that, but I missed an opportunity to share the beautiful, hard moments I go through daily.
My daughter’s (Alice) biggest daily struggle is food. Every time I serve a meal, I go through the exhausting process of making sure there’s something on the table she will eat.
Helping my daughter explore and eat foods is a never-ending game of whack-a-mole.
I don’t know the rules she has subconsciously made up for herself around food…the rules that make her feel safe enough to eat food. She has been dropping foods from the ages 5-10 years old. Now, Alice is 12. Only when she got braces did I have the first clue as to maybe why food was hard for her; she could not chew it. She has a severe underbite and her back molar alignment, or lack thereof, make it extremely difficult for her to chew her food. The lightbulb went of in my brain. It’s not that she doesn’t like all food. She eats food she can mush or smush and swallow. SHE CAN SWALLOW! What a gift THAT is!
Working with Occupational Therapists (OT’s), Feeding Specialists, and more, we have made progress on food in different areas, but it hasn’t solved all the food issues. Eating food is still hard for her. She visually discriminates food before she touches, smells, or tastes it. The first step for her is visual. She has to decide if visually the food looks safe enought to eat before ever touching the food.
Going out to a restaurant is something we rarely do as a family. Her staple food for quite some time has been buttered pasta…that’s about it. A menu may have chicken fingers, but there’s a lot of variation in them. Alice doesn’t like the crunchy breading, so we pull it off. And sometimes, the chicken finger still isn’t a win for her. We have worked so hard to understand the nuances of the situation. We are more aware that, if we can find ways to simplify the difficulty, we can make progress in so many areas that involve food. We have learned to say, “That doesn’t work for your body. That’s ok.” And then we move on. We don’t linger, stress, or beg. We just accept the fact that it’s not working for her body. This is important because we have learned that this phrase isn’t about her, it’s about her body’s ability to do something with the food like chew, or maybe it’s the flavor or taste or smell or other. Her body is trying to work with the food, but the food isn’t working for her body. In my case, spicy food does not work for my body. It makes sense to me that some food won’t work for her body too.
Autism is like ice cream; there’s a lot of flavors.
No two people are alike. Our kiddo, Alice, struggles with sensory issues, which is classified as Sensory Processing Disorder/Differences (SPD) like so many other people in the world. (We prefer the term “differences” because Alice likes things orderly and is not disorderly. She is not a disorder. She operates differently.)
Whether individuals get a diagnosis or not, I don’t think everyone needs a diagnosis. However, there comes a point where more help is needed than an individual knows what to do or services, which is where a diagnosis may be helpful to seek services for supporting one’s needs. This is what our road to where we are today looked like. There were so many little things we were able to adjust for and accommodated for over time, but eventually food became the tipping point for us that we were no longer able to know how to proceed forward.
We had to face the hard reality; our daughter ate less than twenty foods and we no longer were able to figure out how to help her.
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She was growing and needing nourishment yet refused nearly every food we provided for her growing body. As our story unfolded, we discovered that her sensory system was so overwhelmed with everything from noise to the lighting, that her body seemed to feel like it was constantly bombarded. Her nervous was constantly under attack. She was too stressed to eat. Things began to make sense.
If I was in a field under constant artillery fire, I wouldn’t be interested in sitting down to have a picnic.
No wonder she was refusing to eat; she was stressed all the time. She physically could not eat. If she was a “glass full of water,” she was being shaken to the point where there was no more water left in her “glass” of life. She could not refill that glass. The motion around her had to stop. She needed to be still, calm, and relaxed in order to refill her “cup of water.” She needed to find out how to do this and we needed help in learning how to help her.
Alice likes to eat snacks in the car. That seemed to feel less hard for her, so I always had a snack basket with things she likes like fresh cut apples, cheese sticks, gold fish, and pretzels. With the help of an OT, we learned that even the way a person sits in a chair can aid or deter the ability for one’s body to feel less difficult to eat. We learned that the core strength required in just sitting is instrumental in so many aspects of life from eating at the table for sitting to write, and more. We learned more and more and more.
Every day has it’s struggles and every day has its beautiful moments. “Mommy, will you snuggle me?” she often asks in the morning, curled up under a soft blanket in my living room. She finds it cozy to be in the dark, hiding from the imposing morning light that inevitably means she must start another daunting day. Every day, I know morning is her least favorite. The morning light is so bright, her brothers are SO loud for her, and the day is just beginning. She is preparing for her daily battle of handling the bombardment of noise and managing to eat while overwhelmed in the world.
In the hard, there is beauty. Every morning, I look forward to her sweet snuggles and thoughts that pour out of her mind. Some days, she stares at the ceiling while we are snuggled up and asks questions like, “What is the tallest mountain?” or “Can we learn about polar bears today?” Her mind is curious about the world and wants to understand how all pieces of the world work together. She seeks to find ways to save the animals in the ocean we are so quickly polluting. She wants to know about the world around her, how she fits into it, and how to survive it.
Alice helps me find a deeper meaning to the world in which we live and I am forever grateful for this.
The beauty she brings into my life is like that of a flower.
Autism is like a rose.
Roses are beautiful and they have thorns.
Notice I said AND, not BUT. There’s a difference in the sentences:
Roses are beautiful, but they have thorns.
(This sentence notes the beauty the rose has is negated by the harshness of its thorns.)
Roses are beautiful and they have thorns.
(This emphasizes the roses’ beauty and notes the thorns are part of the rose, which helps keep the roses safe from things that may try to destroy the precious flower.)
How about this:
Roses are beautiful.
(Don’t even mention the thorns!? Thorns are part of having a rose or a rose bush.)
I pondered about the interaction I had with the lady one day about my child having Autism. Some people think Autism is an incurable condition like a disease. No; it’s not.
We explain autism like a computer’s operating system, which manage the resources of a computer. Every computer has an operating system, and one is not better than another; they help a computer operate. Software on a computer is the set of instructions for performing specific tasks. Every person is like a computer with a different operating system and software. Computers can do some amazing things and so can we.
Learning to appreciate each operating system with its software can help one appreciate the differences in humans and those who are classified as “Autistic.” Our road to understand our version of Autism and what SPD is for us has helps me operate better with my own operating system and software I have within me every day. It helps me to appreciate my husband and my children for each unique thing they have within them. We have a LOT more understanding than we did before we had the language to describe it all.
I believe we all have our “isms,” even though it may not be defined as Autism. People are quirky in so many ways. Having a word to define the quirky nature of individuals may be helpful. I find that for me, the more helpful label is SPD which is a specific, quantifiable set of characteristics that defines the things we deal with daily regarding my daughter’s sensory system, classified under the generic term “Autism.”
Similarly, being a pilot, many people ask if I fly for the airlines or am a military pilot. I am none of these. I am a Certified Flight Instructor (CFI) and I teach people to fly, like teaching people to drive, just in the air. No, I don’t work for the airlines, but I am certified to fly planes. I am a pilot. Having a specific word to quantify a skillset helps me explain to others that I work in General Aviation (GA) and fly sometimes for pay and sometimes recreationally.
Autism is a spectrum, which means there’s a wide range on that spectrum.
Like light, you only see the colors of the spectrum when the light is bent; it’s invisible to the naked eye. When someone’s unique self becomes visible to others around them, it is like a rainbow bringing beauty to the world and visible only for those who see it.
Rainbows are made visible to us when light is bent through droplets of water suspended in the air, making the spectrum of colors visible to our eyes.
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I have been awestruck on more than one occasion by an incredible rainbow reaching across the sky.
The next time someone says to me, “I’m sorry,” I am prepared to reply, “Thank you for your empathy. By raising my amazing daughter, I am able to see the world around me in a unique way. Like a rainbow shows its light, I see the world around us differently. If you’ve ever read the Amelia Bedelia books, it’s like having my own “Amelia Bedelia” right in my own home. Alice brings joy and laughter to our lives in a way I have never seen before.”
Alice has helped me see the world in a new way. I adore my sweet girl. Not all days are sunshine. After the storm, we always look for the rainbows.
PS: If this was helpful to you or may be helpful for someone you know, please share it with them. Thanks!
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Signing Off,
-BG Barnstormer
AKA Auntie Birdie