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How We Helped My Brother With Autism Cope With Our Grandfather’s Death

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For John, my younger brother with autism, death is his biggest fear. He’s afraid of what will happen when to him after Dad, Mom, Joe (our older brother) and I die. We’ve tried to assure him he will always be taken care of either by a family member or by the state. But his fear of the unknown frightens him to tears.

Throughout John’s life, family members have passed away. Since John hardly knew them, their deaths were sad but not emotionally impacting. But this all changed after Grandpa died in April 2015. This was the first death of a close relative. Through our experience with our grandfather’s death, our family learned how to help John cope with death and grief.

1.
 We were careful of what we said.

Grandpa died as a result of compilations from a fall. From the time of the fall to his death, we watched everything we said about the situation. With John’s intense fear of death, we didn’t want John to hear the details of Grandpa’s fall. He knew Grandpa was in the hospital, but that little information deeply affected him.

We decided to share as much information about Grandpa as possible outside of our home or when John was in school, at a friend’s house or when he was asleep. If information had to be shared when John was around, we would text, go to another room or speak in Spanish (John isn’t fluent in Spanish).

2. We monitored our mourning.

From the day of Grandpa’s death to the day of his funeral, we kept a close eye on our mourning. Mom didn’t want John to be more upset than he already was. We did cry in front of him to show him crying is a normal part of mourning. But we did our best not to lose control of ourselves. The last thing we wanted to do was to make John even more afraid of death.

As difficult as it was for us, it was even more difficult for John. He was trying to make sense of what was happening, as well as dealing with the multiple feelings brought up by Grandpa’s death.

3. We encouraged John to ask questions.

To help John cope with Grandpa’s death, we told him if he had any questions, we would do our best to answer them. By allowing John to ask questions, we felt it would help him understand and better deal with the grief of Grandpa’s passing.

Two days after Grandpa’s death, John felt ready to ask questions. The questions varied from “Why did Grandpa have to die?” to “What will happen to me when everyone dies?” This a hard conversation to have, but it helped him cope with the deep loss he felt.

4. We allowed him time to cope.

Two weeks after the funeral, Grandpa’s headstone was installed at the cemetery. The family went to go see it. I asked John if he wanted to come. All he said was, “When I’m ready.” We left it at that.

Later, on the first anniversary of Grandpa’s death, John went with us to visit him. After looking at the grave, he rushed back to the car and stayed there until we left. The reality of Grandpa being under the ground was too much for him. I give John credit for going to the cemetery and facing his fear.

5. We let him know he’s safe.

John went to the cemetery because he felt safe. He knew if he had an issue there, we would help him work through it. Before John could feel safe, he needed to feel he could trust us. It took many years to build up the trust John has with us. Now he knows he can come to us with a problem, and we will help him.

We have no control of what will happen tomorrow. That’s the cold truth. Currently, we’re taking legal steps to ensure John will be protected, whether it’s a family member or the state.

There’s no easy way to talk about or prepare for post-death arrangements, but we need to prepare for the inevitable.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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I'm Tired of Pretending

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I’m tired. I’m tired of faking, pretending, masking and being in pain. I’m tired of not being my truest self for the sake of being my worldliest self.

I’m tired of sitting on my hands, planting my feet on the ground and letting all the energy build up. I’m tired of telling myself, “You can do it. Just a couple more hours.” I’m tired of coming home just to rock, spin and flap until late into the night to settle down from the day. I’m tired of exploding at the end of a busy couple days and shutting myself in the bathroom with my weighted blanket, the lights off and fan on to make it go away.

That’s what my life has been the past several months — spending the whole day trying to look like I’m looking at people’s faces only for the back of my eyes to be blank. Forcing myself to be engaging, to spit the words out, to look like I’ve got it all together. Second-guessing everything I say and do to make sure it is “neurotypical” enough. Qualifying statements not to go all the way to what I actually think, not to give my truth. To act like I’m not autistic. No more. I’m tired.

A few weeks ago, one of my mentors and one of the greatest human beings on the earth told me if she didn’t know better, she wouldn’t guess I was autistic. At the time, I was relieved. I was so proud of myself. It was working. I was “normal.” It was worth it. But nothing is worth locking my truest self away. Nothing provides the same reprieve that being the best version of me provides. It isn’t about being the best “normal” version or the best friendly person. It’s just about being the best me.

For me, that means flapping my hands. It means listening intently and listening best when I’m not looking at you. It means rocking in my chair while I work and humming while I concentrate. It means chewing on things — ice, fidgets, straws, anything but gum.

Not being my true self has had drastic consequences. And yeah, acting neurotypical may work for a while, but that’s not how I believe God made me. That’s not how my brain works. No matter how your brain works, you should be free to be yourself. I believe God made me this way and made my brain this way. I am gifted. My brain can see numbers and patterns. My brain struggles with sarcasm, sensory input and social interactions. My brain struggles in certain areas and excels in others, just like the rest of humanity. It just happens that autistics tend to struggle in areas neurotypicals often find easier.

There are definitely days when I wish I didn’t have autism, when I wish I was “normal,” whatever that is. But then I knock out a season’s worth of stats in a couple hours to look for trends and ways to make our team better, and I remember I am who I am. I am who I believe God made me, perfectly me.

So if my hands are flappy, just let me be. Nothing has changed.

I’m tired of being tired. It’s time to embrace me.

Erin posing with someone in front of a photo of the Space Needle

Follow this journey on Erinmmckinney.com.

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5 Things I Fear as an Adult With Autism

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Every person can experience fear and anxiety; it’s part what makes us human. Sensory issues mixed with obsessive thoughts from my autism cause my fears to be heightened.

Five things I fear, which may seem irrational to the typical mind but produce a fight-or-flight response for me, include:

1. Driving long distances in my car.

My savant mind keeps track of statistics. In 2014, there were more than 32,000 deaths caused by motor vehicle crashes, according to the Insurance Institute for Highway Safety, Highway Loss Data Institute.

I fear becoming one of these statistics. My autism also causes me to become easily distracted, and I fear driving out of state and getting lost during the night on a dirt road surround by cornfields.

2. Change in my daily routine.

One of the main characteristics of autism in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders is repetitive behavioral.

I follow the same rigid pattern every work day. I get up at 5:55 a.m. and head to work. But an infant baby has the power to change my rituals. I fear waking up at 5:30 a.m. and driving my daughter to my parents’ house. I fear being late for work due to a new pattern.

3. Meddling with my toy collection.

I have a $6,000 Calico Critter collection kept in unopened stacked boxes and also animal toys from around the world stored in my former bedroom (or man cave) at my parents’ house.

After my daughter was born, my parents wanted to remodel my old bedroom into a nursery. The honey badger came out of the burrow ready to fight. Needless to say, the collection stayed, and my parent’s guest room became a nursery.

4. Abnormal phobias.

When I was 6 years old, we went for a family vacation. During the vacation, we visited a farm in Missouri. The farmer’s wife had mud-stained, long toenails. For the next seven years, I would experience a meltdown with just the sight of bare feet. This phobia kept me from swimming at the beach.

Two years ago, I read an article about a homeless man who froze to death in an outhouse and his body wasn’t discovered until summer. As you can guess, I won’t be using an outhouse anytime soon .

5. Supervisors and job performance reviews.

I’ve experienced both underemployment and unemployment. I fear having a supervisor call me into his office and stating, “Things just aren’t working out here” or “You’re just not the right fit.”

I’ve learned not to allow my emotions or fears control or overwhelm me and instead move forward. When I experience fear and anxiety, I can talk with my family,
friends or co-workers and evaluate if the situation or problem is something I should fear. I also can take three deep breaths to release my anxiety.

Follow this journey on Spectrum Inclusion.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

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I Celebrate the Birthday of My Son With Autism His Way, Not Mine

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Presents and toys, birthday badges and party invites.

Balloons and banners, fancy dress outfits and homemade cakes.

Silly games of pin the tail on the donkey, musical statues, and “Who’s the best dancer?”

A hot sweaty house full of giddy kids high on fizzy pop and cup cakes.

Class friends having a ball as they fling themselves around on an oversized Minion bouncy castle.

And my son laughing and smiling in the middle of it all.

The playground moms huddled around a table, laughing and gossiping about the antics of the chair of the PTA at last week’s school dance.

Enjoying a glass of wine and picking at nibbles while declaring the diet starts tomorrow.

We air kiss as they leave and walk down the driveway and clamber into their family cars.

I collapse in a heap on the sofa happily content as I watch him delve into his pile of presents. Filled with a sense of relief he has enjoyed all the fuss and everyone had turned up.

This is what birthdays are all about for kids, aren’t they? We plan lavish events so we can boast about having the mobile zoo at the local church hall for our little kiddo’s special day.

Unwritten protocol states we have to invite the whole class to the party, even the ones we don’t really want to be there.

And then on the big day, we pack our kids off to school, wearing a flashing birthday badge and holding a bag of goodies for them to hand out at the end of the school day.

Well, at least this is what I used to think my son’s birthday would look like when I daydreamed about his future all those years ago.

In fact, 12 years ago this very day I was pacing the floor of the maternity ward waiting anxiously for the surgeon to give us the all clear to for my planned C-section.

I was 38 weeks pregnant, tired and hungry. But none of that mattered as we were hours away from meeting our little baby boy. I couldn’t wait to hold him in my arms, and my mind was full of all the possibilities that lay ahead.

Where have the years gone?  I, for one, am not the same person I was back then. And my little baby boy is now 12.

I quickly learned as my son was growing up that birthdays for him wouldn’t look like the images I had created in my mind. Don’t get me wrong, I tried. For many years, I forced him to conform to my idea of what his birthday should look like. I booked the church halls, invited the class and made the cakes.

But my son would cry, he wouldn’t want to join in and he wouldn’t want to open his presents. Then the invitations stopped coming his way, and the moms in the playground didn’t become the friends I had once expected they would.

We had become the ones who weren’t invited, and those that did try to invite us didn’t know what to say to me when I had to make excuses for him not being able to go. When I would ask for the exact itinerary of the afternoon’s events or when he would get upset and cry in front of all his friends, they would look at me with a puzzled sort of confusion that I will never forget.

But I have adapted. I have had to learn that my idea of a perfect birthday isn’t the same as my son’s.

So there may not have been a cake in sight today or a donkey pinned on my living room wall for that matter. But that doesn’t mean he hasn’t had a nice day! He ate his favorite food with his tea with one of his closest friends, played on his PS4 and devoured a whole chocolate brownie with delight.

There was no flashing birthday badge pinned to his school jumper or treat-sized chocolates for his classmates this morning. But that’s OK! He woke up and his smile melted my heart. He enjoyed his birthday croissants and a cup of tea while reading the texts from his family, giggling at the lovely messages they had sent him.

There was no giant bouncy castle or dainty cupcakes today. But I’m OK with that because he was. He has bounced on his trampoline, snuggled in his new sleeping bag and brushed the salty popcorn out of his teeth with his new vibrating toothbrush (for longer than he’s ever brushed his teeth before — bonus!)

I have to be honest with you: The process of learning to accept this difference hasn’t been an easy one. Sometimes I think, “If only,” but then I see his happy face and get such joy from seeing him flapping with excitement as he slides into his new sleeping bag — and those feelings slip away to be replaced with all-consuming pride. His joy of life is infectious at times like this.

So now I find myself giggling at the things I wrap up as presents sometimes — ice pops, popcorn and shaving foam spring to mind. But it’s what my son loves. It what makes him tick, so why not?

And part of my journey as a mother is learning my son’s journey is his own. It’s not mine. I am merely along for the ride. It’s his day, not mine.

So this weekend instead of booking a mobile zoo for the whole class, I’m taking my little man to his favorite zoo for the day, so he can spend nine hours doing what he loves surrounded by his favorite animals — free, happy, flapping and loving life!

Happy birthday, darling boy!

Follow this journey on A Slice of Autism.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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U.K. Teacher Writes Moving Letter to Student With Autism Who Didn't Pass Standardized Test

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Standardized tests are meant to be challenging, but for students who learn differently these tests can be especially daunting and sometimes unfair.

At Lansbury Bridge School and Sports College, a school for students with special needs in St. Helens, England, most students opt out of taking the country’s standardized tests.

Not 11-year-old Ben Twist though. Twist decided he was up for the challenge and sat down for his SATs, the U.K.’s version of a high school placement test.

Though Twist did not pass the exam, his teacher sent him home with a note highlighting his accomplishments as a student, accomplishments which aren’t measured by placement exams.

The note – shared by Twist’s mother, Gail Twist, on Twitter – congratulates the young man on his attitude and success in completing the exam. His teacher, Mrs. Clarkson, then goes to share a crucial lesson about standardized tests.

“A very important piece of information I want you to understand is that these tests only measure a little bit of you and your abilities,” Clarkson writes. “They are important and you have done so well but Ben Twist is made up of many other skills and talents that we at Lansbury Bridge see and measure in other ways.”

Clarkson then goes on to list some of Twist’s skills and talents including: his kindness, ability to make friends, artistic talent, and athletic prowess among many others.

You can read Clarkson’s full letter below.

The letter reads:

I am writing to you to congratulate you on your attitude and success in completing your end of key stage SATs.

Gil, Lynn, Angela, Steph and Anne have worked so well with you this year and you have made some fabulous progress. I have written to you and your parents to tell you the results of the tests.

A very important piece of information I want you to understand is that these tests only measure a little bit of you and your abilities. They are important and you have done so well but Ben Twist is made up of many other skills and talents that we at Lansbury Bridge see and measure in other ways.

Other talents you have that these test do not measure include

• Your artistic talents

• Your ability to work in a team

• Your growing independence

• Your kindness

• Your ability to express your opinion

• Your abilities in sport

• Your ability to make and keep friends

• Your ability to discuss and evaluate your own progress

• Your design and building talents

• Your musical ability

We are so pleased that all of these different talents and abilities make you the special person you are and these are all of the things we measure to reassure us that you are always making progress and continuing to develop as a lovely bright young man.

Well done Ben, we are very proud of you.

Best Wishes,

Mrs Clarkson

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Why I Said Yes When My 4-Year-Old Son With Autism Asked for an American Girl Doll

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boy holding an american girl doll I shocked a lot of people in the American Girl store when I let my son Gavin pick out a doll. Most of the staff thought we were there just for his sister Kendall and he was there to be a supportive brother.

brother and sister with american girl doll bags

After the new catalog arrived at our house, they both asked if they could get a doll this weekend. I was happy to take Kendall because she had a gift card she’d anxiously been waiting to spend. But words cannot express the excitement I felt when when Gavin asked if he could get a doll too. 

It was only three years ago I sat with this same boy who lined up all of his toys in a row while trying to play. When my husband Doug and I would inquire with his therapy team why he did this, their response was hard to hear. They explained to us Gavin did not understand how to play with toys. To him, lining all of them up or grouping them by colors made sense. Beyond trying to teach him speech, OT, and social skills, they also spent time working with Gavin on understanding what it meant to play. 

When Gavin asked for a doll, it seriously warmed my heart. I wasn’t 100 percent sure he would actually play with it, but I figured we would see how he did at the store.

While Kendall debated about which doll she was going to get, we walked Gavin over to the Bitty Baby section. He immediately grabbed a baby off the shelf and started walking her around. He held her in his arms and hugged and tried to get her to go to sleep.

boy sleeping with his american girl doll

Sure, I could have taken him to another retailer afterwards and purchased a significantly cheaper doll for him, but this is this one he wanted and this moment was worth celebrating! Since purchasing our Bitty Baby doll this morning he has named her Baby Jenny. He has explained to all of us that her birthday is June 9 (she’s one month) and that he is her big brother.

As a society we encourage children to play with toys for several different reasons. There are toys that teach kids and there are toys that exist exclusively for them to have fun. Today I was able to watch Gavin excel in pretend play. Finding him snuggled up with his new baby doll tonight is a moment I didn’t even know I had been waiting for all these years.

His journey continues to surprise me and amaze me every day. I see a lot of Bitty Baby accessory shopping in our future. I can’t wait to sit back and watch his imagination take flight with Baby Jenny. 

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