To the Person Who Doesn't Get Why My Son Won't Eat the Food You Made

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To the Person Who Doesn’t Take My Son’s Sensory Issues Seriously,

Yeah, he’s a picky eater. Yeah, his diet isn’t great. Yeah, he knows Cinnamon Toast Crunch Cereal is not a food group. And yeah, even though he’s hungry, he’s still not going to eat your (insert anything here that is not Cinnamon Toast Crunch Cereal, Vanilla Oreos, Velveeta Shells & Cheese, pizza, apples or Pringles). It’s not because he’s “spoiled.” It’s not because we “give in to him.” It’s not because we “always let him win.” And it’s not because your mac and cheese sucks — it’s because he has sensory processing difficulties and he is not going to eat it… not today, not tomorrow, not next Thursday. It’s not about me, and it’s not about you. It’s about him.

Although you may think, “He will eat it when he gets hungry enough,” chances are, he won’t. And as a mother who understands him, advocates for him and loves him, I’m never going to test your theory. Would you be willing to try “just a bite” of some rotting food out of a dumpster on a hot summer day? Because, no offense, but that’s exactly what your mac and cheese might smell and taste like to him.

These sensory sensitivities come as a result of his autism, not as a result of poor parenting or because he is a “stubborn, strong-willed child.” His sensory system is on heightened alert because his brain processes his sense of smell, taste, sight and touch differently than you and I do, so him not eating your mac and cheese is not meant to offend you, it’s meant to protect him. Eating what he is used to, what he knows he likes, makes him feel safe. Even though your mac and cheese may be award-winning, to my son it’s an unpredictable threat.

When he was little, he would yell, “no, no, no” when an undesirable, new, threatening food was placed before him. Now that he is older, he is better able to explain how threatening your mac and cheese is to his sensory system. “My brain and my body will not let that food go in my mouth.” It doesn’t matter if it’s a stinky, hard-boiled egg, a delicious-smelling, warm and gooey brownie, or your mac and cheese — his brain and his body say “no,” and I respect that because I respect him. I just wish you would.

If perhaps you would read some of the articles, blog posts and books I’ve suggested to you so you can try to understand him and his sensory system better, maybe you would spend less time fighting him and more time relating to him. You might see how far he’s come and not how far you believe he still has to go. You may see him and not your untouched mac and cheese.

The next time we come to visit, consider serving Velveeta Shells & Cheese instead — not because you’re “giving in,” “spoiling him” or “always letting him win,” but because you love him, respect him and are trying to understand him and his sensory sensitivities. By taking the time to learn about this amazing person you love, you will be more aware, accepting and understanding. Perhaps then, you will finally see him, and not what is or isn’t on his plate.

Sincerely,

Ryan’s Mom

Kathy's son draining cooked pasta in the sink

Follow this journey on The AWEnesty of Autism.

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To the Employer Hesitant to Hire Someone Because of Autism

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Dear Employer,

I understand you’re hesitant to hire someone because of an autism diagnosis. I think as much as an autistic employee deserves the chance to be hired, you also deserve a chance to understand autism and what makes an autistic employee a great addition to your workforce.

When a potential employee discloses she has autism, listen with an open mind and don’t jump to conclusions. Allow the candidate to educate you and take time to educate yourself. There can be a lot of misinformation about autism, especially in adults. Ask the candidate about organizations they would recommend for more information about autism.

Don’t let autism be the reason why you choose a different candidate. Choose the candidate who is the most qualified and who fits in with your vision and goals.

Here are some things that may help you when you decide to hire someone with autism spectrum disorder. It’s important to keep in mind that not all people with autism are the same. The tips I give you may not be applicable to all autistic employees.

1. Be accepting.

We are likely to do things you would consider unusual, such as make repetitive movements or repeat phrases. These are likely examples of stimming, scripting or echolalia, which are different forms of self-regulation. The ability to self-regulate allows autistics to cope with overwhelming environments and situations.

2. Be accommodating.

Often times, autistic employees will need breaks. This may go back to self-regulation and is not a sign of laziness. Personally, I may take a few minutes to go for a walk, spin in my chair or turn the lights off and rock. Taking a break allows me to be more productive in the long run.

3. Be predictable.

Apparently, this is difficult in an office environment. For many autistics, routine increases comfort and allows for a predictability that we may find difficult to come by. Many neurotypicals have told me plans change, and I have to be able to deal with it. It may be easy for you, but it’s extremely difficult for many people on the spectrum. If changes must be made, give as much warning and as much time as possible. Be patient and understand a change of plans may take some time from which to recover. Give your autistic employee the space and time necessary to recover.

4. Be respectful.

Social rules are often difficult for individuals on the spectrum. Eye contact may be difficult. Understand that the lack of eye contact may allow your autistic employee to listen better. Respect your autistic employee’s ability to answer for himself or herself. Sometimes, I have a difficult time getting the words out of my mouth. They get stuck. My silence doesn’t mean I don’t have an opinion. Be patient and give your employee time to formulate an adequate response. Alternative forms of communication may be easier for your autistic employee. For some autistics, writing or typing may be easier than speaking. Emails or texts may be the best form of communication for certain employees.

5. Be understanding.

Autistic people operate differently. Neurotypicals often see this manifest itself in stimming or other self-regulatory behaviors, but it begins in the brain. We see things differently. Problems can be solved in multiple ways. What may seem obvious to neurotypicals may not be obvious to someone on the spectrum. Conversely, an autistic employee may see a way to solve a problem a neurotypical wouldn’t. Presume competence. Trust your employee to do his job even if he does it differently than others.

Hiring an autistic employee may be the best decision you make as someone tasked with hiring. Autistic people can be loyal and passionate. We’re honest and not prone to prejudice or tied to social expectations. We will do our job to the best of our ability and will help you see the world differently. Best-selling author Temple Grandin says we are different, not less. Embrace different.

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To the Presidential Candidates Bringing Up Autism in the Debates

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Dear So and So who wants my vote,

Hello! I see you’re trying to court a rapidly growing community. Smart move seeing how large the autism population and those who love and support them has grown. No debating with you on that one. This is more than just a special interest group. You clearly see we want changes, and we make that known at the polls.

Here’s the thing. (You knew that was coming. Sit down, Sir and/or Madam.) You think you know what it is we all want. It’s not as simple as you or your people are leading you to believe. Lesson one with autism: it’s never a simple thing.

Apparently, I was suppose to fall over or do backflips because autism was mentioned during the last Republican candidates’ debate. Did my you get my attention? Yes, but not in the way you wanted. All I heard was the same stuff that has been said far too often. The big old vaccine debate gets tossed around and lots of scary words like “epidemic” are bellowed from the podium. Cue the big applause from the audience. 

I’m not applauding a single one of those candidates for talking about autism. Why? Simply because they seem to forget time and time again that all these autistic kids they love to talk about will grow up. Yes Sir or Madam, these kids age! I know. It’s amazing how they grow taller and bigger! I’ve seen it with my very own eyes as my 11-year-old son puts on a pair of jeans that are now three inches too short. 

Candidates, just what are you going to do for these autistic children you love to talk about? As much as I joke about how I can’t die and I have to live forever for my son, let’s face reality. Someday, I will. Who will care for my adult child? Will my son be given the chance to have meaningful employment? Will he have access to proper medical care? Knock on wood, we have been lucky on the health front with our kid, but I know many more who have “autism and…” such as epilepsy, heart issues, diabetes, etc. What about them?

Often I see the government slash social services budgets to bits, citing welfare and Medicaid reform. Did you know our kids, the ones you love to talk about when you’re trying to get a vote, are the very ones who need it? You want me to be impressed you’re even bringing up autism. Impress me more by remembering how much our population depends on these programs you look to trim far too much. 

It’s great you’re talking about our kids. Don’t get me wrong there. Education and supports are so vital to our children, especially in the early years. Just don’t stop the conversation at “children.” Let’s expand that to “people.” Call me when you have some presentations to share about providing longterm health coverage, supports, employment and appropriate housing for autistic adults who need it. Then I’ll know you’re really thinking about our kids. 

Be careful when you go to throw out what you think is a buzzword or a good sound bite. We’re listening, and we’re voting.

Follow this journey on Autism With a Side of Fries.

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The Unique Way a Tour Guide Connected With My Son With Autism

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Our family traveled to Great Britain this summer. It was a once-in-a-lifetime trip and an amazing opportunity to expose our son on the autism spectrum to new experiences and broaden his skills.

We met many people on our trip who were universally kind and professional. Some were the staff at the places we stayed. Some were the folks who sold us tickets or directed us at the sight-seeing locations we visited.

Our interactions with most people were brief, but there were some people, generally guides, with whom we interacted for longer periods of time.

There was one guide who was special: Charlie. 

When we met Charlie, we talked briefly about what we would be doing and seeing before we started the tour. As I stepped away to help our son with something, Charlie approached my husband to discuss the tour in more detail. Then we were off.

Charlie was knowledgeable and ably led our tour. After a while, I started to notice how Charlie really seemed to know how to talk to our son and how to engage him during the tour.

Our son connected with Charlie in a way he didn’t usually with people he had just met. Other guides we encountered had tried to engage our son with things they assumed he would be interested in, like Harry Potter or sports. Our son didn’t respond to these attempts, and the guides would give up.

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Charlie, on the other hand, listened to what our son talked about and then built conversations based on those interests.

I was impressed and very happy because our son was having a great time doing something he initially wasn’t really that interested in doing.

At one point in the tour, I had a chance to talk to Charlie alone. “You are amazing with him,” I said. “We didn’t mentioned this before, but he’s on the autism spectrum. You are really a natural at connecting with him.”

Charlie smiled a little shyly. “That’s because I am on the autism spectrum, too.”

Charlie realized our son was on the spectrum within minutes after meeting him. When we had stepped away prior to starting the tour, without disclosing the realization, Charlie had talked with my husband to modify the tour to better meet our son’s needs. He did things like:

• Limiting the tour to less crowded and noisy areas.

• Structuring the tour with defined sites, instead of a more free-flowing, flexible tour.

• Giving us ongoing reminders of where we were going and how many sites were left to see.

As we continued the tour, I thought about what a gift Charlie was. It was wonderful luck to have a tour guide who happened to be on the autism spectrum, who truly understood what being on the spectrum meant for our son and who was willing to quietly make changes to accommodate him.

Charlie had made the entire tour better for our son by just understanding him. 

And it was more than that. As I watched them interacting, I realized we were getting a glimpse of the future I would wish for my son.

I have often thought about what he might do — his education and career goals — and how to prepare him for that. Charlie was an example for our son of what autism looked like in an adult, in someone he respected and enjoyed.

Charlie helped our son on our tour and gave us a positive vision of a promising future. A great gift indeed.

Details in this article have been changed and obscured for privacy.

Follow this journey on Autism Mom.

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When My Medically Fragile Son Can’t Tell Me What He’s Feeling

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What’s it like having a medically fragile child who can’t tell you his symptoms or what his body is feeling?

You hold your breath. You check him over every day for any sign of illness, injury and you hope you find nothing. When there is an injury or illness, you hold you breath. You treat it and hope it doesn’t spread. You keep the dark thoughts in the back of your mind from entering your conscious mind. You pray the doctors are right in their diagnosis and are doing the right thing.

You spend a lot of time researching. And hoping. Hoping something will add up. Hoping the symptoms will come together and make sense.

You spend a lot time teaching. Teaching the language of pain. Hoping he will understand and be able to start telling you. And knowing how hard it is to teach your child the different types of pain. And silently crying on the inside when he does tell you the pain he’s in. Knowing every day he’s having pounding headaches and he’s telling you it feels like sharp knifes.

Then you call doctors. You research. You try to put the pieces together. Treatment begins and you hold your breath. You hope it’s the right thing. But you prepare for it if it’s not.

Sometimes you have to protect your child instead of being able to hug and kiss them. This may be one of the hardest things. When your job just becomes protecting and keeping him from hurting himself because the pain inside himself is too great, you often weep at night for the choices you must make. You just want to hug him and tell him it will be OK and you will make it better. Nothing breaks your heart more than watching him go through this. You feel helpless and try to stay calm and keep searching for answers.

It’s one thing to be medically fragile, but it’s another thing to not be able to explain your symptoms. Everything is locked up inside his body, and you feel like you have to be a behavior detective to figure out what the symptoms are and the cause of those symptoms. It’s a vicious circle. Through it all, you hold your breath. You love harder than most people can imagine because you never know what the next moment will bring. Will there be a dimple smile and tears of happiness or will it be cries of pain?

So you are often holding your breath. And loving. Loving harder than you ever thought imaginable. And when you hug, you hug deeper, stronger and longer than you knew was possible. And you live, live a fuller life than you ever imagined and cherish each moment your child is well and happy and smiling.

And you say I love you. Always. As much as possible. So he will always know your love is there and never wavering.

“When they ask how far love goes, when my job is done, you’ll be the one who knows.” — Dar Williams.

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Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

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When a Delta Air Lines Pilot Gave My Son With Autism an Amazing Gift

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Clicking through the Internet a few months ago, I stumbled upon a story about a girl with autism and her family who were escorted off a United Airlines flight. I cringed. You see, we were planning a trip that would involve four separate flights with Jonah, my very anxious, getting-bigger-than-his-mommy autistic son. It had been a while since we had flown, and I was hopeful this time would be better than the last. But after reading the story of what would be my worst nightmare, I wondered if the tolerance of the flying public had finally snapped.

There was nothing we could do but hope for the best and plan for the worst. And plan, we did.

Our son has an obsession. The one topic he can never get enough of is Delta Air Lines. Now mind you, that doesn’t necessarily mean he’s excited to get on an airplane. He just thinks that if you do so, it should be on Delta. For a few years now, he has been collecting anything that says Delta on it. Our wonderful friends and family always bring him whatever loot they can get off a flight, from wing pins to cookies and even napkins. A flight attendant friend once sent him a box of goodies that kept him happy for weeks.

So, of course, we booked our flights with Delta.

I need to stop this little tale for a second to tell you that having been a part of the special needs community for most of my life, I have observed a few things. And one of those things is this: There is a lot of entitlement that goes on in the hearts and minds of some of us.

Because my life has had this extraordinary challenge attached to it, I can have the belief, at times, that I deserve my fair share of special treatment. There is some truth in this because — I’m not gonna lie — we need a little extra help! But that doesn’t give us the right to be demanding or be ungrateful to those who must go the extra mile on our behalf.

So we planned. First, I planned out all the food and special treats Jonah would need over the course of those four flights. Nobody wants to sit next to a hungry kid. We also made sure there were toys, games and videos to help hold his interest.

Next, we turned our attention to those who would be serving us on the flights. We made a little note card and attached it to a candy bar and passed them out to the entire crew on every flight.

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The response from this little act of appreciation was absolutely amazing!

I’m happy to tell you there are some amazing men and women jetting all over the skies, and when you take a moment to truly appreciate their service, they will go above and beyond the call of duty. Such was our experience.

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We didn’t fly first class, but I felt like a celebrity on those flights. Each person working the flight took the time to find us and thank us for the goodies. They then proceeded to check on us on a regular basis to see if we needed anything. Each of them took a moment to acknowledge Jonah and bring him special stuff to make his flight more fun. On every flight, he was invited to the cockpit by the captain. And on the last leg of our journey, Captain Tim Garvin finally succeeded in getting Jonah to agree to visit the cockpit. You see, our kid was still a little nervous, but the kindness of the flight crew won him over.

Why am I sharing this story with you? Because I want to share with you that there are really wonderful strangers in the world, and when we treat them with kindness and appreciation, they will often respond in the most wonderful way.

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A few weeks after we came home from our trip, the postman left a package on our doorstep. I wasn’t expecting anything so I opened it with great curiosity. In it, I found the most amazing gift for our son. Captain Garvin, who had already exceeded his duty in his kindness to Jonah, wasn’t done yet.

Inside the box was a real, honest-to-goodness Delta captain’s hat! The beaming joy that sprung to my son’s face was priceless.

So if you find that the world is not quite meeting your expectations when it comes to your child with special needs, try a different approach. Kindness and gratitude has given us much more than an entitled attitude ever has.

A very special thank you to the wonderful people of Delta Air Lines for their extraordinary service and understanding they showed to one little autistic boy who will forever be their biggest fan!

Follow this journey on rohndasue.com.

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