woman on a tire swing

If the World Was Built for Me

306
306
2

If the world was built for me, there would be nothing “wrong” with me. I would be happy and safe and certain and successful.

If the world was built for me, when I met people there would be no expectation of physical contact or small talk. We may ignore each other with a socially acceptable nod, or throw ourselves into a deep and meaningful conversation.

If the world was built for me, we would all sit next to each other, not opposite. Things would be based on literal words, not guessed expressions and gestures.

If the world was built for me, there would be a compulsory day off for everyone after any social event. Just so we could all take the time to recharge and process things.

If the world was built for me, work would be about working and nothing else. There wouldn’t be the necessary interaction that goes with it. My productivity would skyrocket. Working days would shorten. Free time would be shared.

If the world was built for me, you’d ask me why I’m constantly fiddling with a piece of whatever it is I need that day, and I’d tell you with a smile. You’d chuckle and accept it. I’d like you more.

woman on a tire swing

If the world was built for me, noise cancelling headphones would be handed out in crowded places, trains would be bigger, people would be banned from touching people they don’t know without permission. (I don’t mean criminalized. We have that, and it doesn’t work. I mean magically banned.)

If the world was built for me, I could touch and revel and find joy in the textures that please me. And I could hide from and keep away from those that fill me with pain and revulsion.

If the world was built for me, you wouldn’t ask me how your clothes look, unless you want my honest opinion.

If the world was built for me, there would be an airlock between my home and the real world. A buffer zone for daily encroachers. An arm’s length.

If the world was built for me, any invitation would come with a detailed plan of where and when and how. I would be able to construct a plan and a map with little extra effort from me. I would know what was happening.

If the world was built for me, people would let me know if plans needed to change. They would message me and minimize the pain in my head as I grind the gears to adjust.

If the world was built for me, family gatherings would keep me safe. Touching, hugging, kissing, would all be on my terms. Talk would not make me feel alien and alone. It would be safe and kind and loving.

If the world was built for me, real rules would be explicit, and fake rules would come with an explanation. I wouldn’t find myself following rules that everyone else knows aren’t real.

But the world isn’t built for me.

It’s built for people who like those things, or can cope with them, or don’t like them but don’t mind, or don’t like them and can say they don’t like them, for reasons that are valid in the world of everyone-else.

The world isn’t built for me. So as the person with a brain that isn’t the norm, I have to find a way to fit.

I sometimes wonder if you would like my world, with its gentle structure and routine, its beauty and its simplicity, its honesty and its truth, its patterns.

I sometimes wonder if I’d miss your world if it went away. As exhausting and painful as it can be, like cold, blunt metal, all ridged and hard to lean on, it has its charms. It has its moments. It has its joys.

If the world was built for me, I would make sure the world could be built for you too.

306
306
2

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Going Beyond Books to the 'Whole Different Story' of Living With Autism

392
392
1

We have a saying in the autism community, “It’s easy to read about autism, but it’s a whole different story to live it.”

We are at a crossroads in our community today because there are countless people on the autism spectrum, along with their families and friends, sharing their stories in blogs, journal entries, books, documentaries and so much more.

When I was growing up with autism, that wasn’t always the case. Then John Elder Robison came out with his book “Look Me in the Eye” in 2007. He tells his story of being diagnosed with Asperger’s syndrome and his incredible life growing up on the spectrum. It became a New York Times Bestseller and led to a movement of other people with autism wanting to share their own autobiographies with the world.

In 2010 HBO Films released “Temple Grandin,” starring Claire Danes, a biopic about Dr. Temple Grandin, a famed animal husbandry expert who was diagnosed with classic autism at a very early age. The film received critical acclaim and won several Emmy Awards including the Primetime Emmy Award for Outstanding Television Movie. This helped spur another movement towards the entertainment industry looking to tell more stories about people on the autism spectrum.

Because of that, I have a favor to ask of everyone reading this article today. The next time you are trying to learn more about autism, consider having people with autism speak about their experiences at your events. While reading about autism is important, listening to the experiences of those who have grown up with autism will give you a whole new outlook on our community. Hear their successes, their challenges, and you will learn about how wide of a spectrum we have out there.

You may be surprised to learn how many people with autism are going into the world of motivational speaking. I started speaking professionally about my life on the autism spectrum in 2011 and have never looked back. Other names in these ranks include Dr. Temple Grandin, John Elder Robison, and Dr. Stephen Shore along with countless others. In addition, we need to hear from families of those who are on the severe end of the spectrum, who may have challenges that require lifetime care and supports.

With all of these voices in our community, let’s make sure they are given the opportunity to be heard.

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

392
392
1
JOIN THE CONVERSATION

To the Parent of the Kid Who Thinks My Kid Is 'Weird'

35k
35k
6

I am not just a mom… I’m a police officer, detective, analyzer, mind reader, bodyguard and more. I worry every second about the unwritten rules of social interaction because my daughter on the autism spectrum does not understand them. She’s very genuine, has no filter and now can speak from her heart (she couldn’t five years ago). In a different world, her expectations of life, her reactions to the simple beauty of the universe would be so welcomed. Not in our world.

Today at the pool in the apartment complex, I try to get her to understand she was not invited to a nearby birthday party. I use strong loving words. She says, “OK, Mommy” but still she wants to go explain to the kids why she was not invited. I divert her attention to something else and prepare myself for the possibility of a meltdown.

This time, no meltdown, no extra energy spent. Relief. She is finally in the pool, and she wants to interact with the kids. She asks all of them, “Can I play with you?” They all say no. She yells, “Mom, they don’t want to play with me.”

I say (with a broken heart, like a broken record), “Honey, it happens, and you just have to keep trying.”

Out of desperation, wanting to get someone’s attention, she tells one of the boys, “I want to marry you!” She’s 8 going on 15 at this moment.

The boy runs and says, “This girl is crazy!”

She’s relentless and runs after him reminding him what she’s just proposed. She looks at me with the slyest smile — I understand, she’s targeting him to have fun and to remind him girls rule. And to remind me her label, diagnosis, challenges will not stop her relentless spirit and desire to be one of the kids. I am so proud.

So, dear parent of a kid without a label, talk to your kid, answer their questions, eliminate the existing fear of the unknown. More than anything, let them know my kid is not “weird,” my kid is not “crazy” and my kid is not “a pain.” My kid is just a kid, like yours.

Image via Thinkstock.

35k
35k
6
TOPICS
JOIN THE CONVERSATION

6 Back-to-School Tips for Parents of Children on the Autism Spectrum

51
51
2

Although my daughter on the spectrum graduated from college two years ago, I remember holding my breath at the beginning of each school year wondering if Samantha would adapt to new schools, teachers and classmates. Often the school year felt like a roller coaster, so I’m hoping that what I learned from my experiences with Samantha will help parents and their kids on the autism spectrum enjoy a smoother ride.

1. Clothing: if your child on the spectrum doesn’t wear a uniform to school, he or she can transition into the classroom by wearing summer shorts and t-shirts. That’s one less change in routine and one less disruption. Stock up on fall and winter clothes in advance of the season, as soon as they are available in stores. As always, you want to avoid mobs and rushing. If your child is having a bad day, you don’t want to feel pressured to shop. If you’re shopping far enough in advance, you’ll have the luxury of choosing a better day. If your child wears a uniform to school, getting dressed on weekdays will be simpler, but you will still need to buy weekend clothes.

Laying out a clean uniform or a choice of outfit the night before saves time and reduces stress in the morning. Ask for your child’s input. Take this opportunity to develop the life skill of choosing appropriate attire for the weather and occasion. Is it going to rain? Put out galoshes and raincoats. Will it be chilly in the morning, waiting for the bus? Leave out a sweater or light jacket. Dialogue with your child about these choices and why they make sense.

When your children on the spectrum are young, it’s important to make it easy for them to dress independently. I recommend sneakers with Velcro instead of laces, zippers over buttons, and soft stretchy fabrics that slip on and off easily. You may need to remove all tags and labels to accommodate sensory issues. My daughter ripped out scratchy labels, often tearing her clothes unless I snipped them out first. Finally, try to find some fun in clothing selection. Let your child wear their favorite color and develop their own sense of style.

2. Bedtime: If possible, establish a routine for school nights. For years, my daughter listened to the same Linda Ronstadt tape before falling asleep. Your child may prefer to read a story, watch TV or play video games in order to relax before bed. The goal is to ensure that your child gets enough sleep so he or she can function at their best. (Mom and Dad also need time to unwind.) Establish a reasonable bedtime for school days, weekends and vacations, and help your child stick to it.

3. Lunch: Make sure your child has healthy, well-balanced choices in their lunch box. My daughter insisted on a green apple every single day. Why not? I always gave her one, along with her sandwich and juice box. It’s important to honor your child’s taste preferences and sensitivities. Some kids need each food item to be carefully separated; others avoid certain textures or colors. Food fights aren’t worth it. Pack a lunch your child will eat.

4. Time Management: Help your child figure out how much time he or she needs to get ready for school. For younger children, you set the alarm, lay out the clothes, and serve breakfast. As your child gets older, he or she can begin to take over these responsibilities. Your mission is to gradually make yourself obsolete. Will your 8-year-old reliably brush his or her teeth without a reminder? Is your daughter able to comb the knots out of her own hair, or will she walk out the door looking disheveled? At 10, my daughter brushed her teeth, dressed herself without help, poured her own bowl of Cheerios, but brushing her hair properly still required assistance.

5. Mental Preparation: If your child’s previous school year was wonderful, be sure to remind him or her of last year’s success. Will they see a favorite teacher or classmate who’s been away all summer? Does your child love art or music class? If last year was difficult, emphasize all the ways that this year will be better. Cheerlead your child into a better vision. For example, “Now you’re in 8th grade and you get the privilege of leaving school for lunch” (if that is true at your child’s school). Reassure them: “You definitely will not have that same math teacher again.” Ask your child what they’re looking forward to and what they’re anxious about. Above all, reassure them that you are there to help with whatever problems may come up, just like you were last year. You can remind your child about their past accomplishments. “Remember when you thought you’d never ride a bike or learn long division?” And then help them set achievable goals. “I bet you’ll be able to read chapter books this year.”

6. Medical Check-Up: How is your kid’s vision? Weak eyesight interferes with learning at school, but it may not be obvious. My daughter had 20/20 vision, but she also had a condition called exotropia (where her eye drifted out). Exotropia prevented her from seeing the world in three dimensions and turned out to be the main reason she wasn’t making good eye contact. Sometimes a good pair of glasses or the right eye exercises can make all the difference.

Many children with autism have sensory motor issues like dysgraphia. It’s important to address these challenges one by one. Maybe your child will need a keyboard or occupational therapy or both. Set your child up to succeed by anticipating and addressing their issues before they become chronic problems. Finally, make sure your child’s evaluations are up to date so they start school with all their accommodations in place.

Image via Thinkstock Images

51
51
2
TOPICS
, Contributor list
JOIN THE CONVERSATION

The One Thing We Insisted Be Included in IEP Meetings for Our Son With Autism

3k
3k
18

Right after our son’s autism diagnosis, we had our first individualized education program (IEP) meeting.

At the meeting, my son, his dad and I sat around a low table with his teacher, his special education teacher, his IEP case manager and the school principal.

My son entertained himself with rocks and minerals set on the table for the day’s lesson while the adults started to discuss needed accommodations.

The IEP case manager handed us a piece of paper summarizing our son’s “issues” and started to read this list of “problems” out loud.

I was stunned. My son was sitting at the table with us and could hear the manager reading this list of “problems.” Who would be comfortable listening to authority figures recite what was “wrong” with them?

More importantly, there was no list of my son’s strengths to go along with the list of challenges.

This was the real problem.

For every characteristic that can be classified as a “problem,” there’s a flip side — something that actually works as a benefit for my son. It’s part of his strengths.

For example, his sensory sensitivity gives him the benefit of access to a lot of information. When he processes the sensory input, he can analyze what he heard, saw, smelled and felt and can draw some amazing and astute conclusions.

He may have difficulty processing verbal information as a visual thinker, but he remembers what he saw. He can see an extraordinary amount of detail and can draw beautifully.

While my son’s perseveration could be most challenging, it’s also a characteristic that makes him dogged when trying to learn something new he’s interested in.

No child comes into the world with only challenges.

Children with disabilities must learn strategies and methods to use as tools to help them do the things they want to do. These tools must be focused on the child’s strengths and be based on love, creativity and patience.

Failing to use those strengths as the foundation for developing tools — and not even taking those strengths into consideration — is a failure by the adults responsible for supporting the child.

During an IEP, the child’s strengths should be the first thing discussed — challenges second — including an analysis of how each challenge has a “flip side” that works to benefit the child.

At that first IEP meeting, we insisted from that point forward our son’s strengths were to always be prominently listed along with the “problems” the IEP was intended to address, and that his strengths were considered first and used to frame IEP accommodations.

My son later told me that he wasn’t listening to our discussion — he was more focused on the interesting rocks and minerals on the table and didn’t hear the list of “problems.” 

Thank goodness.

Lead photo source: Thinkstock Images

3k
3k
18
JOIN THE CONVERSATION

To Parents Who Are About to Enter Their Child’s IEP Meeting

3k
3k
2

Dear Parent,

I feel for you.

The amount of anxiety and pressures that can often go into an individualized education program (IEP) meeting can seem daunting. You struggle with compiling your child’s records. At times you may just be worried about your child’s school truly not understanding the needs of your child.

For those just starting off in the process, you might be stressed about the initial evaluation process. As your child grows up, you may also have concerns if your school is truly providing transitional services to help them when they age out of supports as adults.

And don’t even get me started about the amount of IEP paperwork that may be flooding your house right now.

Regardless of where you are in this timeline, I want you to know something very important today.

You are your child’s greatest advocate, so when you get into that room, hold your head up high and advocate to the best of your abilities for the programs and services to address your child’s needs.

I recently listened to a keynote presentation from Ryan Blair, a best-selling author who is a single father of a child on the autism spectrum, in which he said, “When you walk into the room of your child’s IEP meeting, you are the boss. Not the principal.”

My parents lived by this quote of “being the boss” ever since they started advocating as part of my IEP when I was diagnosed with autism at 4. This was when I was just starting school, so while I transitioned to school, my parents transitioned to help me find supports. One of those transitions had to do with preparing for IEP meetings.

Years after, I would start sitting in on more of my IEP meetings to figure out more about the supports I needed to succeed. Being able to discuss this with my village made learning easier for me. I now recommend students to consider sitting in on their IEP meetings to learn more about their development.    

Today as a disability advocate, I can say that there are countless resources out there that I’d recommend to you to help you when it comes to IEPs. Goodwin Procter LLP created “Individualized Education Program (IEP): Summary, Process and Practical Tips,” 26-page guide that contains tips on the IEP process. In addition, groups such as Autism Speaks have created a list of resources that can help with your child’s IEP and other school related topics.

Seek out these resources and never stop fighting for your child. The Individuals
with Disabilities Education Act (IDEA)
 serves as a law to protect our loved ones with disabilities. Protect your child by being prepared and ready for that meeting. My parents made a world of difference towards my development today as an adult on the spectrum by advocating for me and my needs in school.

I hope you will be able to do the same for your child.

Your Friend,

Kerry

This post first appeared on KerryMagro.com.

Lead photo source: Thinkstock Images

3k
3k
2
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.