A Letter From My Wife on the Anniversary of My Autism Diagnosis

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One of the greatest myths about autism spectrum disorder (ASD) is that people on the spectrum lack emotion and empathy. Growing up, I always knew I was different. I wasn’t the best at making friends, but I somehow seemed to manage to develop meaningful relationships along the way. When I was 18 years old, I met someone who would change my life forever. Ours is a story that defies the myths that autism and love cannot coexist.

One year ago this month, I was officially diagnosed with autism spectrum disorder. December is my “autism anniversary,” and Isabella, my wife of nearly 15 years, shares our new journey together in this beautifully written letter that shows autistic people can love and are worth being loved.

Dear Lamar,

I am writing you this letter almost a year from the time that you were first diagnosed with autism spectrum disorder. I just wanted to let you know how extremely proud I am of you as your wife.

First, because you were brave enough to recognize you needed to get evaluated and seek a professional diagnosis when you knew certain things weren’t quite adding up. So many are yet to take that step, so I really applaud you!

Secondly, I am inspired by how much work you’re doing to learn about yourself. I heard you say in the interview with on Autism Live that you have to learn who you are again at the age of 37. I can’t even imagine what that must be like. I applaud you for just having the courage to take that big step and embrace who you are — “fearfully and wonderfully made” — and being OK with who God created you to be and using all your God-given gifts and talents to learn more about the world you have became a part of.

Your response is going to help fill some big gaps, and you’re already becoming such a huge voice for a platform that is often times forgotten about and never ever talked about. I see all the work you’re doing and how committed you are to autism spectrum disorder issues. Your work in the autism world is going to make huge footprints and lead the way for so many who are already a part of it or will become a part of it.

One thing I realized once we started this journey is that I am having to learn who you are all over again. I have known you for 18 plus years, and we will have been married for 15 years in January next year. While your diagnosis does mean having to learn a new you, I am still googly-eyed over you!

Some would question me and say, “Wow, aren’t you concerned this isn’t the same man who you married?” And I would say, “No, this is exactly the man I married. We have just arrived at a point in our life where layers are being peeled off and growth is taking place. Our package comes with ASD as part of that growth, and I’m OK with that.”

As a matter of fact, this has helped to answer some questions I used to have and would put it in the “Lamar is so weird” category. Now, with the help of therapy, books and you teaching me more about who you are, I’m able to understand the “weird.” And believe it or not, it’s teaching me so many things about myself as well. Is it a challenge? Yes, but it’s also helping me to grow.

I especially liked how in one of your articles you talked about just seeing or recognizing that a coin has two sides and having the ability to see the other perspective. That was really an eye-opener for me, because I think we say this all the time about so many things. But in reality, living it can be hard because we’re always thinking that only our perspective is the “right” one. I have to confess that I am not always right, and you aren’t “weird.” We’re just wired differently, and I know we compliment each other well as we continue on the journey. And it can only get better.

There isn’t a day that goes by that I don’t think to myself, “Wow, when I was doing this or when I responding like that to Lamar, I had no idea how much I was stretching you beyond your comfort zone.” I want you to know I am really sorry from the bottom of my heart. I read and re-read your articles you’ve written for The Mighty, and I sometimes think about encounters we had. And it makes realize how small I really was in some of those situations. I want you to know my ignorance to you being on the spectrum isn’t an excuse, but your confirmed diagnosis has permanently removed all my ignorance. And it’s teaching me so many ways that I can find the right balance in making your journey and our journey together everything I believe God intended for it to be.

I love you so much, and my life would not be the same if you weren’t a part of it!

#youarestrong #youareawesome #youaregreat

Isabella M. Hardwick

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The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To the Parent Feeling Guilty About What Your ‘Selective Eater’ Eats

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Me: “Are you going to try turkey on Thanksgiving?”

Colin (my son): “I don’t think so.”

Me: “Well, Aunt Jennifer is making Tofurkey. It is like pretend turkey.”

Colin: “Then I will ‘pretend’ eat it.”

“Selective eater.” Yeah… that is a nice way to put it. You will receive advice about this one all day long, and it will always be the same thing. “If he gets hungry enough, he will eat it.” Maybe so with some kids, but with kiddos on the spectrum, sometimes you just have to wave the white flag and do the best you can. The sensory aversion can just be stronger than the hunger. I have littered this post with pictures of my attempts at being creative with food.  Most met with rejection.

“Starfish”

I can’t tell you how many people have given me books about clever recipes to up the nutrition in some kid-friendly foods. Just chant to yourself, “They mean well. They mean well.”

Let me just share some of these suggestions…

Swap mashed potatoes with mashed cauliflower: How did this ever get published? Yeah, no one will ever notice that the mashed potatoes now smell like feet. That being said, I still can’t get the kid to eat potatoes, and they are full of delicious, booty-expanding carbs! This is a great source of shame for my Irish husband, who still holds out hope that when the kid turns 21, he will then have a palate refined enough to enjoy a Guinness with his father.

Mix zucchini into meatloaf: Yeah, because all kids love meatloaf. “And I would do anything for love, but I won’t to that.” In this case, “that” refers to the futile effort of trying to convince the kiddo that meat can be molded into a bread shape and be palatable. Then he will not only avoid the meatloaf, he will stop eating bread.

Hide veggies under the cheese in your pizza: OK, let us just gloss over the fact that my son won’t even touch pizza. Under the cheese, really? Are you fooled when the kid hides the peas under his napkin? Didn’t think so.

I could go on, but I’m sure you get the idea. I read an entire recipe book with tricky ways to get your kid to eat healthy things, and every “kid-friendly” food was something my son didn’t think was very friendly at all. However, the idea of being sneaky and deceitful did appeal to me. Sound terrible? Yeah, how are Santa and the Tooth Fairy doing? Check your pants, parents, ’cause they may be on fire. It is our right, nay, our duty to fib to our kids from time to time. Ask the grandparents. They call it “tradition.”

Wookiee Cookies

I’ve been known to pull a fast one with something I call “ninja food.” Everything’s better with a cool name. It’s called ninja food because you won’t even know it’s there and then — BAM! — you just ingested some vitamin A! One of the four meals my son finds edible is the good old blue box. I puree some ninja carrots. It only works if the color is consistent. I’m only in real trouble if he ever tastes the real thing, loaded with much more delicious things, such as milk and butter. Until that day I will happily watch him unknowingly wolf down half a dozen baby carrots while rubbing my hands together and twisting my invisible mustache like the evil genius I am. However, just like the ideas listed above, ninja food won’t work for everyone.  It is merely a few steps above veggies in meatloaf.

I often find myself trying to find out what exactly is so offensive about a particular food. My son gives me clues such as, “It tastes too high-pitched.” Another one, “It is too much like a volcano.” I eventually figured out that “high pitched” means tart. I thought volcano meant hot, but it turns out that it means the food tastes like vinegar. (We would make baking soda and vinegar volcanoes in the backyard. Those he would taste.)

Well, that is something…

So, if all of that well-meaning advice is no good, what could I possibly have that is any better? Well, I want to tell you it gets better with time. People tell me that, but I don’t honestly know. What I do know is this: It does us no good at all to get sucked in by guilt. Stop looking at those perfect bento boxes filled with low-fat, high-protein, zero-GMO, gluten-free goodness on Pinterest and feeling bad that your kid just ate a can of Pringles along with exactly seven raisins placed neatly in a row. Sometimes it takes a lot to make that raisin thing happen, I know.

It is between you and your doctor to handle the health of your child. The judge of that should not be the little miss yoga pants and coconut water, side-eyeing your grocery cart. The long road of parenthood is lined with billboards, all telling you that you’re doing it wrong. Trust yourself. Know when to push, and know when to pull back.

One more thing. I know your secret. I know you fantasize about taking your kid to a casual dining restaurant and watching them gobble up food that was not painstakingly prepared by your loving, yet weary hands. Do yourself a favor and don’t hate those who make it look so easy. Comparison will kill your joy. What joy, you ask? The joy of knowing their bill will be much higher than yours since you played sherpa and smuggled in a full can of Pringles and seven raisins.

Follow this journey on RaisingJedi and the RaisingJedi Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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15 Autism Myths People Affected by It Want to See Busted

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When I Went From Devastated to Ecstatic About My Son Riding the ‘Short Bus’

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I will be the first to admit there was a time in my life when the thought of my child riding the “short bus” felt like a devastating blow. It wasn’t so much the stigma attached to it as it was the far-reaching implications of such a need and the realization that things would be so different for our family. When we realized we were going down a special education path, I envied my friends who would worry about things like PTA meetings and bake sales. Following our son’s autism diagnosis and prognosis, I worried endlessly about his future. I worried every day about how tomorrow would unfold. The weight of so many unknowns was palpable.

As our son’s aggression, anxiety and sensory issues worsened and interfered hourly with his quality of life, my worries early on about giving up “normal” seemed petty and ignorant. As I watched him so often crippled by his fear and pained by his senses, the only thing that mattered was helping him through every anxious moment and holding on to the happy moments that were so far and few between.

During the harder days when he was without services, without mental health care and without proper education, I didn’t have enough energy to think about tomorrow or 10 years from now. I was spent just trying to keep everyone in our house safe from one minute to the next, including our son who would self-injure as well as aggress towards his siblings and me.

With his anxiety taking over, the hope of him attending a regular school in a special ed classroom started slipping away. I was no longer obsessed with him mainstreaming or “fixing” his delays; that was the least of our problems. When he shook, screamed and got sick when we all tried to go on a bus for a special outing, I knew he probably would never ride the bus even if he could attend public school. During the weeks he couldn’t even leave the house without incident or if sensory overload affected him for days, I would have fully embraced my son going willingly on a bus (whatever size) to a school that could accommodate him.

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So today when he rode the “short bus” for the first time on a class field trip, I had tears in my eyes and hope in my heart. He looked back at me about a 100 times to make sure I was sitting in the seat behind him, but he smiled and got a thrill when the bus accelerated. Guiding him onto the bus and asking him to sit next to him was a little boy who has taken to him since the start of the year. As the teacher explained all that was to come, my son started rocking and his friend grabbed his hand. I watched them walk together in the hallway and heard this sweet boy tell him the bus wouldn’t be so scary. As we pulled away from the school, he told my son he could cover his ears when we got to our destination if it was too loud.

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I couldn’t ask for a better friend for him. A friend who is so accepting and aware of the issues my son faces. A friend who has Treacher-Collins syndrome and partial deafness and has overcome so much already in his own young life. The other children talked to my son, too. The boy who sat across the aisle from them called for my boy by name to look out his window at the Christmas lights we were passing. There was a time when I was so leery of special ed classes and the “short bus,” but now I see a safe space where my son is not judged. He is not only accepted; he is liked. He has friends.    

One of his other friends could not go today due to a seizure and hospital stay. So, yes, you come to a point where you are not only OK with your child riding the “short bus,” you are ecstatic that he can and did. Right now seeing him happy and healthy and growing and learning is everything I could ask for, and anything else is just noise. We have hard days. But today was a good day. Today he rode the “short bus,” and it was perfect.

Follow this journey on From the Bowels of Motherhood.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Mom Shocked When Son With Autism Comes Home With New Shoe Accessory

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Leslie Carpenter’s son Asher attends kindergarten at Glenwood Heights Primary School in Vancouver, Washington, and one day she noticed something different when he came home.

“I looked down at his shoes and thought, ‘What are those? Where are his laces?’” Carpenter told local television news station KGW. “[I] realized they are special laces.”

Asher is currently being tested for autism, so he doesn’t yet qualify for services in his school. In a post on Facebook his mom said he’s been struggling to tie his shoes. “He has times where he cannot control himself and has ticks and unties his laces,” Carpenter wrote. “He cannot re-tie them… I felt at a loss, not sure what to do, and felt heart broken every time I would see him get off the bus with his laces dangling.”

Apparently someone at school noticed Asher’s difficulty went out of their way to find a solution: Hickies, a special kind of no-tie laces that convert sneakers to slip ons. “It blew me away,” Carpenter told KGW upon seeing her son come home with the laces. “I started crying right then and there. I just broke down.”

A note and instructions were left in Asher’s backpack on how to use the laces, but Carpenter still had no idea who gave them to her son. After posting a photo of the modified shoes on Facebook with a heartfelt message thanking the generous stranger, Carpenter learned it was an occupational therapist, Carolyn Torricelli, who gave Asher the helpful accessory.

“Now I realize it’s not about making him get used to regular laces,” Carpenter wrote on Facebook. “It’s about meeting him where he is, and if that means special laces… then so be it. His smile, and to see him confident about his shoes means everything. Thank you Glenwood Heights Primary school for your amazing staff and those around our children. You’ve sincerely touched my heart and your kindness to my son and his special needs when you didn’t have to, and this day in age it is very easy to just treat a child as ‘another head’ in a classroom.”

Asher came home without his laces. He had these replacing them, with a note and instructions in his backpack about these special laces. I teared up. I couldn’t believe that someone went out of their way to help him and even found these special laces I had no clue about. I just want to thank whomever that came into Miss Lefevber’s kindergarten class and did this for my Son. He’s so proud of his new laces and has not touched his shoes out of habit once. Now I realize it’s not about making him get used to regular laces. It’s about meeting him where he is, and if that means special laces… then so be it. His smile, and to see him confident about his shoes means everything. Thank you Glenwood Heights Primary school for your amazing staff and those around our children. You’ve sincerely touched my heart and your kindness to my Son and his special needs when you didn’t have to, and this day in age it is very easy to just treat a child as “another head” in a classroom.

My 5 year old son came home from school with his shoe laces gone from Glenwood Heights Primary School in Brush Prairie,…

Posted by Leslie May on Friday, December 4, 2015

Read Carpenter’s Facebook post in its entirety below:

My 5 year old son came home from school with his shoe laces gone from Glenwood Heights Primary School in Brush Prairie, Washington/ Battle Ground School District.

Let me elaborate:

My son is autistic. Every day he struggles with his shoes. While this may not be a big thing to some, it’s everything to him. He has times where he cannot control himself and has ticks and unties his laces. He cannot re-tie them. He does this for multiple reasons but it’s become a daily occurrance. I’ve struggled within myself to take away his laced up shoes but didn’t know if it would just encourage the behavior. Every single day, same thing. ..he’d walk off he bus with those shoes untied. I felt at a loss..not sure what to do, and felt heart broken every time I would see him get off the bus with his laces dangling. He even felt bad about it and would hang his head in shame knowing his shoes were to be tied. and as a Mother I felt helpless..

Until 2 days ago.

Asher came home without his laces. He had these replacing them, with a note and instructions in his backpack about these special laces. I teared up. I couldn’t believe that someone went out of their way to help him and even found these special laces I had no clue about. I just want to thank whomever that came into Miss Lefevber’s kindergarten class and did this for my Son. He’s so proud of his new laces and has not touched his shoes out of habit once. Now I realize it’s not about making him get used to regular laces. It’s about meeting him where he is, and if that means special laces… then so be it. His smile, and to see him confident about his shoes means everything. Thank you Glenwood Heights Primary school for your amazing staff and those around our children. You’ve sincerely touched my heart and your kindness to my Son and his special needs when you didn’t have to, and this day in age it is very easy to just treat a child as “another head” in a classroom.

-Ashers Mom

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