How Routines Involving Medicine Impact My Son on the Autism Spectrum

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This past winter was especially hard on my 7-year-old son. Subzero temperatures combined with coughing and sneezing classmates proved to be too much for his young immune system to handle, and more than once we found ourselves in the waiting room of the neighborhood clinic or, even worse, in the emergency room dealing with asthma related issues.

Each upper respiratory infection, bout of vomiting and nausea or asthma flare-up came with its own set of routine procedures that needed to be done to manage symptoms and alleviate discomfort. After so many times of having the same illness, my son quickly came to know what to expect.

“Yellow medicine, inhaler and apple juice please,” he’d say just before bedtime every night in anticipation of what was to come.

As his troubling symptoms subsided and his strength and playfulness began to return, his medication schedule changed. When it was apparent he had gotten over what was ailing him, I stopped giving him medicine altogether. But, like clockwork, he’d make the same requests for medicine he had made each night he was sick.

Sometimes, he’d ask with such determination that it seemed he indeed needed his medicine but when he asked with a big grin on his face or while jumping up and down on the bed and appeared to have no symptoms of illness at all, it became clear I needed more information about what he was feeling physically.

After asking him if his belly, throat and just about every other part of his body hurt with the help of pictures and feelings chart and getting a solid “no” from him every time, I knew he wasn’t sick but stuck in a routine that was no longer serving him.

My thoughts were confirmed by his special education teacher. She said children on the autism spectrum can often become attached to routines because they bring them comfort and can help them make sense of their world.

Instead of giving my son medicine when he asks for it, I’ve learned to pay attention to his body language to understand what’s happening to him.

If he is laying down more than usual, appears tired or doesn’t want to play with his favorite toys, these are strong signals he may not be feeling well. If he’s coughing, wheezing or has a runny nose, he may be at the beginning stages of a cold. I also listen to what he has to say. If he says “my belly hurts” I know he’s not feeling well.

Routines that involve giving my child medications are necessary but require me to use a great deal of caution so I don’t give my son the wrong medications or over-medicate him accidentally. Thanks to the guidance of experienced professionals, I’ve learned how to assess my son’s condition so he can get the treatment he needs when he needs it.

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Why I Wanted the Autism Label for My Son

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There’s a saying you might have heard, “If you meet one person with autism, you’ve met one person with autism.”

Sometimes I wonder if only those who really know someone with autism get how little others understand this saying. Not everyone who has autism has the same characteristics or traits. Just because your friend’s child with autism doesn’t make eye contact doesn’t mean my child won’t either. Just because the man with autism you worked with has a photographic memory, it doesn’t mean my child does, too.

There is a reason it’s called autism spectrum disorder, and in case it’s not obvious, the key word is “spectrum.” Everyone with autism is unique and the spectrum is huge.

Primarily, my 5-year-old son, Brody, has an undiagnosed genetic disorder with a secondary diagnosis of autism spectrum disorder and epilepsy. We are members of a great charity called SWAN UK (Syndromes Without a Name) who support families like mine, who have children with no overarching diagnosis to explain all of their symptoms. And we are part of a huge genetic study, called the Deciphering Developmental Disorders (DDD) to try and find answers.

I regularly hear stories that it wasn’t easy for parents to get an autism diagnosis for their child. It wasn’t straightforward for us, either.

Brody’s pediatrician was reluctant to diagnose him in case his autistic traits could be part of his undiagnosed syndrome. But the truth is, we may never find out what syndrome Brody has, so I was keen to make sure he had a diagnosis of autism. Thanks to his speech and language therapist, he received it last year.

I wanted a diagnosis, like so many others, because sometimes a label can help. Yes, labels may bring prejudice and ignorance, but they can also bring understanding and much needed support.

Too many of us know that when you have a child with disabilities, you sometimes have to fight for help and services. Without a diagnosis, this fight is a lot tougher. A diagnosis can help you win some of those battles, even if it’s not all.

And when Brody is upset because a hand dryer has gone off in a public toilet, simply saying he has autism can sometimes help to explain his behavior to those around us.

For me, that helps.

So, what’s our autism story? Well, it doesn’t look like the “Rain Man” type characters you often see portrayed on television.

I hate the term high or low functioning. It’s uncomfortable, clinical and rude. After all, we’re talking about human beings. We’re talking about my beautiful child.

Brody has a learning disability and struggles with understanding. He is nonverbal and dependent on adult care. He needs help with personal needs. He has impulse control and sensory issues. He can laugh and cry in what appear to be inappropriate ways. He has no danger awareness. And at this point we don’t know if he will be able to live independently.

But regardless of these facts, Brody is not defined by his autism or any of his disabilities. He is Brody — our brilliant little boy who is much more than these things.

Brody, who can look you straight in the eye and share a laugh with you, like only you and him are in on the joke.

Brody, who likes to be pushed in his swing or spun around in his IKEA egg chair.

Brody, who loves the car wash.

Brody, who likes to use your hand to point to things in books.

Brody, who could eat an impressive amount of McDonalds’ Chicken Nuggets if given the chance.

Brody, who loves to be tickled.

Brody, who although is up at the crack of dawn each day, loves to lean against you downstairs in the dark and snuggle (with his iPad of course) so you can get over the tiredness a little easier.

Brody, who has a smile that will light up the darkest of rooms and who has the best sense of humor.

I’m glad our son has an autism diagnosis — and I’m pleased that this diagnosis can hopefully help to ensure we can get him the right support he needs as he grows older.

But admittedly, I hope people don’t hear the word autism and just see a label.

I hope they see Brody — just like we see him.

For all of the wonderful things he is.

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Why I Initiate the Conversation About My Daughter Being on the Autism Spectrum

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Moms, dads, grandparents and caregivers everywhere, let this serve as your official warning: If I am out in public with my little girl, and she begins to “act out” in a way that is foreign to you, I will initiate a conversation.

I will talk about something which you might not know how to respond.

I will meet your gaze and tell you my daughter’s name is Piper, and she has autism. I am that mom.

Please don’t mistake my intentions. I will not initiate that conversation to make excuses for my child any more than I will utter those words with the intent of backing you into a corner. My goal is quite the opposite. I’ll tell you she has autism to open the door to reciprocal conversation. I’ll want you to know that as my reality plays out before your eyes, it is OK to ask questions. I will tell you her name to make her “real” to you, and not just some child having a hard time in a parking lot or on a playground.

I will tell you as little or as much as you care to hear. I will tell you autism is different for every child. I will tell you the behaviors Piper is exhibiting may seem odd to you (like continuous spinning or repetitive actions) but they are actually helping ground her in a situation that is beginning to feel overwhelming. I may even get personal, if the conversation leads that way, and tell you how painful it is when people choose to look away, as if she and what she is experiencing don’t exist at all. Because when it comes down to it, regularly averted eyes and silence hit me with a much greater force than any words someone could speak out loud. Because even if words are hurtful, I know Piper is present to the person speaking them.

I am that mom. I will tell you about Piper if you’ll let me. Perhaps we will have a meaningful conversation. That is my ultimate goal. Even if you don’t know how to follow up to what I have told you, and you change the subject or move on, maybe I will have given you something to think about later. Maybe you’ll look up some information about autism in your down-time, and the next time you find yourself in that situation with another mom like me, you’ll feel more comfortable reaching out. Maybe the information you find will enable you to give an informed answer to your own child when they ask you why my daughter was acting a certain way. As long as a door opens somewhere as the result of my words, awareness will have spread a little bit more.

I seek to spread autism awareness because it is key to the future of children like Piper. The little conversations you have with your children about her, and others like her, will shape how she is viewed and treated by her peers. This has a direct impact on self-esteem, especially in social settings, which can be most challenging for anyone on the autism spectrum.

My experience as the mother to a child with autism has taught me that sometimes people don’t know what to say, and other times, they don’t know if it’s OK to ask questions. By initiating a conversation that might feel uncomfortable to you, I am giving you my permission (practically begging you, as a matter of fact) to ask away. I am an open book, and Piper’s story is still being written. If, in response to what I say to you during our brief encounter, you step out of your comfort zone and learn, this gives you the power to help write a positive chapter somewhere in her story. Just by learning, you have the opportunity to positively impact a life. I believe that can be rewarding for both of us.

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Connecting With My Son Over Watermelon Slices

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He was about 5 years old at the time and just like most kids, interested in exploring his surroundings. Although, as a child with Fragile X syndrome and autism, he explored his world a bit differently than other children.

That day we were at Wal-Mart.

In the produce section.

Payton was diagnosed as being on the spectrum shortly after turning 2. After visiting with many physicians, psychologists and therapists, it wasn’t until we met a wonderful physician 150 miles from our home who, within five minutes, was able to determine our son was on the spectrum and having Fragile X syndrome. A couple genetics tests and a few weeks later, we knew for sure.

Since that time, his mother and I did everything we could to learn about his world. We researched what therapies to use. Visited potential schools for Payton. We did everything parents do so their children will succeed. But in that time, through all the research, the traveling and the discussions with specialists, nothing prepared me for a seemingly widening gap between Payton and me.

Payton and I weren’t connecting with one another. Sure, he would return a smile or two if prompted, but would quickly return to whatever he was focused on at the moment. I would try and do what he was doing, get to his level, yet he was completely secure in his own world. It was disheartening at times.

Here was a boy with a loving father who so desperately wanted to share experiences with him. A father who wanted to explore the world together and become a super tandem of father and son.

But that didn’t happen until, “Whose kid is this?” A loud, booming voice could be heard over my left shoulder. I held the cooler door open with my right hand as I turned my head in the direction toward the man’s voice.

It was my kid, Payton.

It must have taken him less than a few seconds to wander about 30 feet away from me. He was standing there, startled and looking into a refrigerated, open shelf display unit used for fruit. The man, about five feet away from Payton, was easily four or five inches taller than my six foot frame, and probably twice my weight.

I dropped the shopping basket as the cooler door slammed shut and ran over to my son.

“People want to eat these, he shouldn’t be doing that!” He was just as loud as the first time. Almost as if he wanted to make an example out of my son.

“Sir, I can explain. You see my — “

Before I could finish he continued, “It don’t matter about your son. You need to curb your kid!”

It don’t matter? Of course it does! Doesn’t he understand?

My inner voice was formulating a wonderfully articulate response about the tendencies autistic children have in a new environment. But I knew it was useless. The Wal-Mart produce section isn’t the place to hold an intellectual conversation about the rearing skills necessary to raise a child on the spectrum. And even if it was, this man surely wasn’t going to listen.

“Yes sir. I’m sorry. I will keep a better eye on him next time,” I responded as I stepped between him and Payton.

“Well, you better. We are shopping here and don’t need our fruits all messed up.”

“I understand, thank you.” And with that I turned around, realizing I didn’t even know why the man was upset in the first place.

On the open shelves, and in the cooler below, were dozens of watermelon slices neatly packaged on white styrofoam squares and wrapped with cellophane. They were on sale and seemed to be a popular item on this summer day.

At first, I couldn’t find any reason why the burly man made such a scene. Perhaps Payton was simply in his way. But the display was huge with plenty of room for anyone to easily select a nice piece of watermelon.

And then I saw it. On the lowest shelf just above the cooler, there was a piece of watermelon with what appeared to be holes in it. There were about five or six holes pushed about an inch deep into the flesh of the watermelon, just the size of a 5-year-old’s finger.

I looked at the one next to it which had about four holes pressed into the cellophane and into the fruit. Below, another one with about eight holes. Another with six holes. And another. In total, there were about a whole watermelon’s worth of slices which Payton had effectively dented into cratered pieces of pink melon.

The picture formed in my head. In the few seconds I was determining if I wanted sausage or pepperoni on our frozen pizza, my son was systematically ruining each piece of watermelon with his tiny fingers. Payton was a quick worker and I could see that it may not have taken much longer for the remaining “good” pieces to feel his fingers, and the burly man sought to stop it immediately.

But why holes in watermelon?

I had read early on — and seen firsthand — how Payton will explore his environment through tactile signals. He loved to touch, hold and feel everything. But here he was simply sticking his finger in fruit!

I looked down at him. He briefly looked back, a bit curious but unconcerned, and swiftly proceeded with his mission of sticking each piece of watermelon with his index finger. I didn’t stop him but just watched for a moment. Squish, squish, squish. He kept going one hole at time. After five or six holes, he moved onto the next piece.

I don’t know why I did it, but I stuck my finger into a piece which was on a higher shelf than Payton’s, almost chest high. Squish. I could feel the watermelon easily give way under the pressure of my finger. Even more, I could feel the actual structure of the watermelon break down the further I pushed in. It was a curious sensation, one I did not expect.

Payton stopped.

He was looking up at my piece of watermelon. Then he looked at me, in my eyes, for longest time.

I looked back at my piece of watermelon and gave it another squish from my finger. My head turned back to Payton who was watching intently. Then he turned and stuck his tiny finger into a fresh piece of watermelon. He looked back at me with a smile, it was now my turn.

The back and forth continued. His turn, my turn. A few minutes had passed before a store employee approached.

“I’ll pay for any damaged watermelons,” I said before she could speak.

She smiled, “have fun!”

I can only imagine what other people were thinking, I could feel a few eyes setting on us and nods of disapproval in my peripheral, but I didn’t care. Payton and I had a job to do, or maybe it was a game. Either way, for the first time I felt we were on the same page, completely and uniquely connected through this new, fun activity of ours.

Finally! We were the dynamic father and son duo!

It was a wonderful feeling I’ll never forget. I often look back upon that day at times when Payton and I can’t seem to connect, I remind myself to slow down and enjoy the moment. Inevitably something will appear and become a catalyst for a connection. Just like it did the first time in the Wal-Mart produce section.

Oh, and for dinner that night Payton choose the sausage pizza, while I provided us with 19 slightly dented watermelon slices!

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To the Hairdresser Who Helped My Son on the Autism Spectrum

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They say we affect the universe even when we move a finger. Everything we do has an impact. Anything others do to us has an effect. We are all the product of each other’s actions and our lives are intertwined in ways we might not even know. That is the reason why I insist on being kind to everyone we come across because our kindness can turn an ordinary day extraordinary. This time my son and I were at the receiving end of this kindness, and that, too, in the most unexpected situation.

I love long hair on my son, but I love it even more when I get his hair trimmed and suddenly I see his twinkling eyes all round and bright that were peeping from behind his mane a while ago. However, this joy is entirely one-sided, because a trip to the hairdresser is no walk in the park for my son.

The hair dryers, clippers, trimmers, scissors, the apron they put on him, the holding his head down — there are too many things that make him extremely anxious and uncomfortable. Going to the hairdresser is an ordeal and we really plan ahead as a family for this trip. We always ensure both my husband and I are there, we have extra clothes packed in case my son throws up out of nervousness and we carry some distractions like his iPad and some fidget toys to keep him distracted.

This trip was not supposed to be any different. It was one of those “deal days” at the salon and it was rather busy, even at an odd time of the day. The wait in a crowded room and the hum and buzz around him had already pushed our son to the edge. When he was called in he resisted, and it was only after some convincing that he finally sat on the chair. I introduced him, I explained his sensory issues and other challenges — a routine I’ve learned to follow over the years as it makes things less complicated.

The hairdresser seemed nice. Like many people who have not worked with an autistic child but don’t want to do something “wrong,” she was cautious and careful, like she was working with hot glass while standing on egg shells. My son was already nervous and was trying to jump off the chair. In between trying to sit him still, distract him and cut his hair , it was complete chaos — like always.

It was then this lady, Terry,  who had checked us in walked up to us and held my son’s hand. She knelt on the floor and gestured the hairdresser to pause. She talked to my son in very gentle whispers, rubbing his palms, reassuring him and singing rhymes to him. I could see she was rusty with the rhymes, but she tried and laughed softly every time she messed up the lyrics. We could see a smile slowly sweeping across our son’s face. He felt safe with his hands firmly secure in his new friend’s hands. Unlike all our previous visits, we were no longer trying to hold our son’s head in place, or hug him tight to hold him down. He was not stressed anymore.

As the hairdresser quickly and swiftly resumed her job, some of this magic brushed off on her, too, and she felt more at ease. She was now also singing to my son while Terry sat there talking to him, keeping him not just distracted but also engaged. The iPad seemed useless against the magic she was weaving with her words and actions. I could see Terry covered from head to toe in my son’s hair, still smiling that charming smile, still greeting her customers, still comforting my son. Not a frown on her face.

Before we knew, we were done. This time it did not seem like an ordeal and these 10 minutes did not feel like an hour. It all felt like a gentle breeze that brushed past us and left us refreshed. Those 10 minutes taught us the beauty of kindness.

Sometimes all it takes is a warm hug, a reaching hand, a genuine smile and a wonderful heart to make a day extraordinary. Life is made up of these beautiful, grateful moments. The rest is just frills, like a glass of martini with a fancy stirrer, good to look at but it’s the martini that keeps you going, not the stirrer. Thanks Terry for adding another glass of martini to my life!

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A Letter to Disney About Promoting Autism Awareness and Acceptance

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Dear Disney,

Growing up on the autism spectrum, one of the most magical places in the world for me to visit was Disney. It didn’t matter if it was Disney World, Disneyland or simply popping in a VHS tape to watch one of the many Disney movies you had made available. Now as an adult who has become an international motivational speaker, I’ve traveled to your parks with younger children with disabilities, and I have to say I’m impressed with the magic
that still remains to this day.

When I was nonverbal and had limited pretend play due to my autism diagnosis, my parents always encouraged me with Disney. That’s when my fascination with all things Disney began. After beginning to talk for the first time, one of the first songs I ever sang in front of an audience was the song  ‘The Circle of Life,” from ‘The Lion King.’ After finding a passion for music from moments like this, I would pursue theatre therapy to help me progress with my communication.

As much as our autism community has moved forward to help provide supports to help our loved ones progress such as myself, I would love to help the future generations of kids with disabilities do the same. That’s why I would like your help. I know countless stories just like mine of those who have been positively impacted by Disney. For example, several of my mentees who have disabilities want to work at Disney one day. Today, I give talks to groups such as yours, PSEG, Wyndham Destination Network, American Express and others in the hopes of them learning about the benefits of hiring people on the spectrum. Then, we also give talks to provide a better understanding to organizations of some of the signs of autism and other disabilities so they can be more aware and accepting.

 

If you ever read this letter, I hope you may reach out to me one day in the hopes we can collaborate to host an event, whether it be a Lunch & Learn or any other type of special event to bring disabilities to the discussion from the perspective of someone who grew up with a disability.

You would be making a lifetime of difference by using your platform for this amazing community.

A version of this post originally appeared on Kerrymagro.com.

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Photo source: Disneyland Facebook page

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