adult making the peace sign

When I was a child I struggled with many things because I was unable to live up to society’s expectations. I was unable to think “inside the box.” I could only think outside of the box. When I wasn’t able to do things in a way people thought was “right” or “normal,” I was made to feel as if I was wrong, incapable or defective. I was the type of person who asked questions or searched for a reason or purpose. When I did these things, people told me I asked too many questions or they said I spent too much time looking for a meaning, reason or purpose behind things. Too many times in my life I heard the statement, “Why can’t you do this (or that) like a normal person?”

As a kid I had a great talent for art. I could draw and paint. I won art contests, got awards for my art and sold a few paintings before graduating from high school. After high school I gave up on art. I went to college and passed all my business courses without reading the book but failed my academic courses because I had a different style of learning. I dropped
out of college when I became homeless.

As an adult I wrote a couple of plays, and then I gave up on playwriting. Then I wrote poems. I won poetry contests and attended poetry readings, but then I gave up on poetry. My next venture was writing books. I published a book, and then I gave up for a while, and then I started back. I wrote another book and gave up on writing again. Now I’m
getting back into writing.

The reason I gave up so many times and on so many things was because I lacked the support I needed in my life. The people I knew assumed that because I survived abuse and overcame homelessness I was strong and I could deal with life alone because I had done it all my life. The truth was, I was not as strong as people thought. If someone had attended my art shows, plays, poetry readings and awards ceremonies then maybe I wouldn’t have been so quick to give up. It is a painful feeling to sit alone and watch other people sit there with their loved ones. It is painful to their loved ones cheer them on. It is even more painful to have strangers and acquaintances compliment you and then say, “Your parents must be so proud.” All you can do at that time is pretend to be happy and thank the person while at the same time feeling an emptiness deep inside of you.

adult making the peace sign When you have autism spectrum disorder (or any disability) it is hard for many neuro-typical people to understand your pain and struggles. Through the internet and social media I’ve met a lot of people who understand what I’m going through and why I think and feel the way I do. Through the internet and social media I’ve met a lot of people who are supportive of my talents, gifts, skills and ideas.

If you have a child with ASD (or any disability or differences), never give up on them. They might not be the child you wanted or they might have behaviors that are difficult for you to deal with, but they still need your support. If you are a family member and you notice a child’s parents are mistreating them, do something. Every child (with and without disabilities) needs to know there is someone out there they can trust. They need someone to believe in their dreams, ideas and abilities, listen to them and help them through their struggles. Every child needs someone to give them that extra push and to encourage them when they feel discouraged. No matter how “mild” or “severe” a child’s disability is or how different the child may seem, every child needs support. Not every child will grow up and do “great” things by society’s standards, but the important thing to remember is the child has a right to become as great as they can be.

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A viral Facebook post is re-enforcing a critical point: you don’t need to host an “autism-friendly” event to make shopping a pleasant experience for people on the autism spectrum.

Gem Salter and her husband recently took their 6-year-old son, River, to Clarks to buy a pair of shoes for school. She posted about her experience on the store’s Facebook page, and it quickly garnered attention. As a person with autism, shopping can be overwhelming for River. “Being autistic, he really struggles with crowds, long queues and noisy places,” his mom explained on Facebook. “I knew there was no way he would cope with that environment so I explained the situation to a member of staff.”

That staff member was Aaran Daniels, who, upon hearing of River’s sensory sensitivities, found a quiet place for the young boy to try on shoes. “Without hesitation, Aaran led us away from the noise and crowds to a staff room and placed a Do Not Disturb sign on the door,” Salter wrote. “He was very patient with River, who was anxious, and went and got lots of different shoes for him to try on.”

After the fitting, Daniels invited the Salter family to come back before opening hours for future shoe fittings. Daniels willingness to help their family was autism acceptance at its best, Salter said.

Since Salter’s post last week, thousands of people have commented, many sharing similar experiences. “Aaron is also the guy who helped get the right pair of school shoes for my daughter last week. She has Down syndrome and will say yes to any question so asking if a shoe is comfy or fits well just doesn’t work. It was really hard getting a good fit and Aaron was really patient and just kept trying pair after pair! Eventually we got some! A lovely guy & a credit to the store,” Sam Gee wrote.

You can read Salter’s full post below.

h/t Scary Mommy


Two weeks ago, I let my heart get on a bus and go to kindergarten for the first time. He wasn’t sure what to expect and neither were we. But he walked determined, straight to that bus and got on without even looking back.

Meanwhile, this momma cried. I cried sad tears because my baby would no longer be with me all day… someone else would be looking out for him. I cried scared tears because I knew he was extraordinary and he was different than a lot of the other kids getting on buses that morning. I was scared of the harsh comments and weird stares that may be directed at my boy because he has autism. I cried confused tears because what the heck were we thinking?! Letting him go to school by himself, in a mainstream classroom? Were we making a mistake? Was this the right move? Would he be OK?

Becky and her son

I’ve done a lot of firsts in my lifetime. First tooth, first drive, first dance, first kiss… But all that is slim to none compared to this first. This was the first time part of my soul was walking around, experiencing new adventures, and I wasn’t there to protect him. I wasn’t there to watch him and let him know it was all going to be OK. He had to process through his day on his own, or at least until he came home. It was seriously the longest day ever.

And it was hard. So hard.

I want him to do this, but living with open hands is no joke. “Here God, here you go. Here’s my most precious thing and I’m entrusting Him to you because I can’t be there, but you can.” Oh dear Lord, it’s freaking hard.

And I have to do this every day?! Part of me wishes he would stay close to home and close to my heart for forever, but I also know he needs to go. He needs to see the world through those amazing blue eyes, innocent and full of wonder. He needs to experience things for himself and learn how to work his way through it all without Mommy or Daddy holding his hand. Because we won’t always be there, and we shouldn’t be.

My son David is a strong, independent, amazing boy and just because he has autism doesn’t mean he will not shine and thrive in this new place in life. He was born to shine. He is ready, even if his parents are not.

So please be gentle with my boy, kindergarten. You don’t know how lucky you are to have him! Don’t worry about us, parents. We can do this. This letting go thing… I think.

It’s just hardest. The real hardest.


The other day, I was stuck in line next to what appeared to be a lovely older woman about my mom’s age. She wore her wispy, ginger- colored hair in a bob. We were standing there forever and had an opportunity to talk, the I-saw-her-Facebook-photos-of-her-dog kind of time. In the course of our discussion, I mentioned my children. She had grandchildren, and we chatted about the similarities and differences between siblings. At some point, I stated that my son has autism, and her reply shut me down — a phenomena that does not happen often.

“I’m so sorry,” she whispered in a hushed tone, turning to glance out the window.

Time stood still.

There was no answer that came to my mind.

Did this woman just apologize for my son having autism?

He’s amazing.

And not just amazing, but f*cking amazing.

But my mind didn’t register a response. I stood there clinging my worn backpack in my hands, searching the confines of my mind to say something other than a profanity-laden rant. I paused, and then I made a calculated decision not to respond in that way. That choice was based upon the certainty that her statement was not made with malice but pure ignorance.

This saddens me.

There is enough evidence in the world to support the wonder of children with autism. There is a one in 68 chance of having a child who falls on the rainbow somewhere. ( I choose to see the spectrum as a rainbow of spectacular colors demonstrated in variances of one shade to another.) Surely this person has crossed paths with an autistic child, even if they didn’t know it.

Could I have chosen to educate her? Yes, but the truth is, I wouldn’t have educated her in that moment. I would have spewed anger instead of education, hostility instead of hope. My words would have not done anything to advance autism acceptance, but instead may have hurt it.

If I could go back to that moment, now that I have had an opportunity to calm down, I wish I had told her that, yes, challenges that can come with autism can be trying, but so can every other step of parenting. That my path has led me to learn not to change the boy, but to change myself. That I am a stubborn woman who has learned to follow the river through the meandering bends, not knowing what is around the corner. That sometimes the straight path is not the right path, and that the water all flows to the same point — it’s just how we get there that’s different.

I should have shared with her how I was afraid of the water, after having been caught in an undertow as a child, but because this persistent, amazing child wouldn’t take no for an answer, his mom learned to scuba dive because he wanted to, he needed to. I should have told her how this child has made me a better person, has opened the world for me, not the other way around. That as a parent, when he was born, I pledged to bring him opportunities and excitement in his life, but the reality is he has brought them to me. I should have told her that because of him, I have learned what the world has to offer. I have seen the good and the bad, and the truth is, there is more good. My son is surrounded by people who love him, support him, and buoy him.

I should have told her to open her eyes and look around, because she is surrounded by people who live on the rainbow, and they are doing remarkable things. They are the brains behind some of the greatest things this world has to offer, the innovations, the designs, the ideas. Autism is not a “curse.” I believe it is a gift for my child and for me.

Image via Thinkstock Images


Dear principals,

Back to school is finally here! In the next coming weeks, you will be presented with countless challenges along with successes as your students and teachers transition for the new academic year. I know your plates will be full, but for five minutes today, I want to share something I think will make a difference and have an impact on at least one, if not more, of your students.

And that thing is autism awareness.

I have a personal story when it comes to this topic. When I was 4, I was diagnosed with autism. The number of people diagnosed with autism when I was diagnosed were one in every 1,000, not the one in 68 we have today. Back then, very few people knew what autism even was. I was one of the only kids in my classes who had autism. Today, it’s more common to know someone on the spectrum or someone connected in some way to a person on the spectrum.

Having autism and going to school can be challenging. During this time, many students with autism are dealing with difficult transitions as they get accustomed to a new structure. This used to be one of my most challenging struggles in schools. I had a routine during the summer, and all of a sudden, it felt like it was “stolen” from me. Other things, such as difficulty making friends, bullying, twirling my hair, reading comprehension and much more, made me scared about whether I would ever be able to succeed in school.

Luckily, one of my dreams was to go to college, and it propelled me to finding the self-motivation in myself to graduate from grade school, graduate from high school, get accepted into 15 colleges and then, six years later, graduating with my undergraduate and Masters degrees. With supports during that time led by my parents and educators, I was able to make this happen.

With that, I hope you will educate your educators on autism by going to websites such as Autism Speaks and the Autism Society of America to learn more what autism is and how you can help students with autism today. Then, I hope you will educate the students not only on what autism and other special needs are, but also accepting all students for who they are. Today in the United States a child is bullied in school every 7 minutes.

I hope you will also consider having self-advocates such as myself come speak at your schools to share our experiences and tips with both educators and students. Our voices can help lead a movement of acceptance in our communities.

Together, with your support this year and every year following it, we will help make the world a more accepting and educated place for our loved ones to live in.

Don’t let ignorance define our schools. Help us educate and break down those barriers with education.

What a great world that would be to live in.

Sincerely,
Kerry

P.S: For those reading this who aren’t principals but want to help spread the word, please consider sharing this article with them to help get your schools involved. Together we can and will make a difference!

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

Image via Thinkstock Images


When I see one of those parenting memes that say something like, “You know you have done your job right when they move out and live independently,” I cry.

My son is autistic. He is smart, but he is on the edge — the line organizations draw in the sand. He doesn’t qualify for help. He needs help. He will be 18 years old soon.

You see, we live in Ontario, Canada. Cutbacks are abundant for services needed. Each year the government makes more cuts, and more people are left out. The second my autistic son turns 18 years old, there are no services. Oh sure, we could pay privately, about $90,000 a year. Just a second while I go climb my money tree.

They will tell you the services are there… if your child is homeless. If your child assaults a police officer. If your child is on drugs or in an abusive situation. They do not tell you what that may really mean: your child may be put in solitary confinement in a psych ward at a hospital until an opening comes… which is five to 10 years, if at all, since your child now has a roof over their head.

There is a program here called Developmental Services Ontario. You can get services if you have an IQ of 70 or lower. They provide help such as grocery shopping, paying bills, helping out around the house, to allow the adult in need independent living without the need of expensive special housing. My son has an IQ of 74. He cannot read, write, or articulate. He’s considered nonverbal. He can do visual perception skills, blocks, 3D building on the IQ test, bringing his score up.

Why isn’t the requirements for DSO based entirely on Adaptive Living Skills instead of IQ? A low IQ does not mean lack of living skills and a high IQ does not mean an abundance of living skills. Adults do have their ALS tested at the third round of the application process. That’s right, there are three steps, and even after all that, you can still be turned down.

Step one: IQ on psychological assessment. Step two: meet with parent/caregiver and adult-child. Step three: ALS assessment alone with adult in need. My son can’t get past stage one. The cutbacks made the requirements more stringent because they don’t have the funds to accommodate everyone in need. I guess the government believes only rich people can have autistic children?

My husband and I are extremely concerned for our son’s future. We are appealing our application in the hopes of services, with the help of our son’s psychologist. There are no guarantees. Housing is scarce, but there is hope if he can get DSO.

Our son will happily live with us forever. He does not have a drug problem. He is not violent. We have no problem having him stay home with us. He’s a great, funny, loving guy. However, if we die, my son is left without help.

If you would like to read more: “Forgotten: Ontario adults with autism and adults with Asperger’s” by AutismOntario.com (PDF)

Is this story similar where you live?

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