8 Words That Changed How I View the Word 'Normal' After My Daughter's Autism Diagnosis

139
139
1

“Normal” is such a weird word. To me, it has connotations of boring, unexciting, run-of-the-mill. I would never want to be referred to as “normal” — I feel it is bland, safe and average. But “normal” can also mean the center, the equilibrium, the thing that always happens, nothing bad, nothing too extreme, just the everyday stuff that goes on. I always felt that “normal” was some badge of acceptance, that you have managed to achieve a middling level of human ability; you were not odd, you were not different, you did not stand out, and in my naive young mind, I thought that everyone’s “normal” was the same. That everyone was striving to be the same “normal,” that we were all connected to a collective brain that pulled and pushed us to conform. That there was a “normal” ideal that we were all striving for, and any deviation from this goal was wrong.

The day our daughter was diagnosed with autism spectrum disorder will forever be etched in my memory, a date in the diary that will ping with recollection as each year goes by — but I will also remember one key phrase the consultant uttered. This phrase was like an illuminated neon sign in a sea of muted words, ideas, strategies and diagnoses that would require many weeks and months for them to be truly understood. That simple, life-changing phrase was: “Your normal will not be anyone else’s normal.”

In those eight words, he summed up a mantra by which I can live, subtly confident in our own abilities, suggesting that molds would be broken, rulebooks rewritten and our own furrow ploughed. It was the light-bulb moment that no, what is “normal” for us is most definitely not “normal” for others. And guess what, there is nothing wrong with that (if only I could go back in time and tell my teenaged self that). He was basically telling us that the way in which we do things to accommodate the strengths and challenges of our wonderful girl on a minute-by-minute basis will most definitely set us apart from how other people behave. From letting her eat vegetables first, then protein, then carbs, ensuring there is exactly half a teaspoon of hot chocolate powder on top of the hot chocolate, to our “in” and “out” trays for homework, to the visualization of a venue we have never visited before, to the bedtime routine that may seem odd to others, that is our “normal.” Our “normal” suits us; it has been lovingly crafted, put to the test many times, reworked, adjusted and continually tweaked. Our “normal” is what works for us, and I couldn’t give a monkey’s if it is seen as “abnormal” by others. I’m pretty sure their “normal” would seem “abnormal” to us. For the first time in my life I can safely say that I’m happy with “normal.”

Follow this journey on Coloring Outside The Lines.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. 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.

Lead photo source: Thinkstock Images

139
139
1

RELATED VIDEOS

JOIN THE CONVERSATION

When Strangers Say They 'Can Tell' My Son Has Autism

85
85
2

My son was running away from me in the supermarket again. I had held him tight as we went through the checkout but let go of him for a second or two to pick up my bags. That was all it took. As I chased after him towards the automatic front doors and into a very busy car park, I noticed a stranger was gently holding his shoulder.

“Is he yours?” she asked as she saw the sweat appear on my forehead.

“Yes,” I puffed as I once again held his wrists.

“He has autism and he is heading right for the car park lift. Thanks for your support.”

“I knew right away he had autism. You can tell.”

If I was given just a small amount of money each time someone told me something similar, I would be rich.

So what makes his difficulties and diagnosis so obvious?

Is it the fact he flaps and stims constantly? I really mean constantly — he cannot seem to sit or stand still. He shakes things, chews things, flaps things, flicks things, squeezes things and licks things all the time. It is difficult not to notice. His body movements are not hidden.

Is it the fact he cannot talk? That may seem like something you would think would not be noticeable, but the noises he does make are noises most people probably don’t hear every day. His noises are not hidden.

Is it the fact that he screams? He can scream longer than a fire alarm and more high-pitched that a whistle. He screams randomly and whenever he feels like it. There is nothing hidden about that.

He runs, he flaps, he has learning difficulties, and he behaves quite differently from other children his age. He is sometimes in a wheelchair for his own safety, and if I have not got the energy to run a marathon while doing my shopping, then I often use a disabled trolley for convenience.

He would rather spend hours at hand dryers in the bathroom than anywhere else in a store, unless they have a lift. He can be entertained for hours just watching lift doors open and close and open and close over and over again.

He is unmissable. He is loud. His tongue is more out of his mouth than it is in. He is handsome, cheeky and adorable. I don’t hide him and I don’t hide his autism. He doesn’t hide his diagnosis either.

People see him and people see his autism.

Sometimes they don’t react very well to that. Other times, like the beautiful stranger tonight, they see a child with obvious difficulties and look out for him.

They comment, they look and they react because my child has challenges that are not difficult to see. I understand that some people can “hide” their challenges, but that isn’t true for everyone.

Sometimes though, the fact it is not hidden brings me into contact with some truly amazing people. My son may not hide his autism, and thankfully there are many people in the world who chose not to hide their love and kindness, too. To the stranger in the supermarket, and the hundreds of other wonderful people who see me and smile, support and help — thank you!

young boy sitting on bus looking out window
Miriam’s son.

Follow this journey on Faithmummy.

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. 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.

85
85
2
TOPICS
JOIN THE CONVERSATION

'Not Autistic Enough'

2k
2k
17

ryan smiling on a baseball field During the month of April, autism is talked about, debated over and sensationalized more than the other 11 months of the year combined, so it stands to reason if you write a blog about autism you are going to hear more from people who have autistic children. They want to compare notes, celebrate progress, cry over setbacks, but mostly, share with someone who “gets it.”

One such parent and I were swapping stories, sharing the good times and the bad. It was nice. It felt comfortable. It felt welcoming. Until it didn’t.

It got colder. It got weird. It got less welcoming. The change was subtle, but I recognized it because I have felt it before. “Ryan is not in the autistic support classroom. He is mainstreamed.” It was a statement, not a brag, not a contest. I was asked, and I answered.

I have seen this change before in other faces of parents loving a child with autism. The expression falls somewhere between disappointment, jealousy, sadness, betrayal to maybe even a little indignation. The face, especially if it belongs to someone whose child is in fact in the autistic support classroom, says, “He is not autistic enough.”

Just like the thousands of people who fall somewhere on the wide expanse known as the autism spectrum, there are equally as many family members who are trying to come to grasp with this diagnosis falling somewhere on the wide spectrum of acceptance. Like on any spectrum, some parents fall on one end while others fall at the other, with tons of parents falling somewhere in between. Much of this may have to do with where their child falls on the autism spectrum, how much time they have had to process their child’s diagnosis and where they stand in their relationships with the friends who seem to enter all autistic parents social circles, Denial and Acceptance.

Prior to knowing a child has autism, when we parents are in that “I wonder if…” stage, we are constantly comparing our child to their siblings, their classmates, their neighbors. Then once the autism diagnosis comes, the comparisons tend to switch from neurotypical kids to other kids with autism. It seems more “fair,” and I totally get it.

We talk with other parents at therapy appointments, at social skills groups, and we consume all we can online about other kids and adults with autism. There is honestly a sense of relief when we read a story online about a child who seems “worse off” than our own. “Well at least my kid can ____,” or “At least my kid doesn’t ____.” I get it because it is hard when a child is “different” so it helps to know that in some realms, those differences aren’t quite as different as others.

Although all autistic people have strengths and deficits, some deficits are much more profound. I understand that a mother whose child has seizures, is non-verbal and unable to be toilet trained has a much different life than my son and me, and while I am empathetic to their struggles, I should never be made to feel “guilty.” My son struggling with how and where to fit in and accepting that he is “different” than most of his classmates is much different than another mother’s son who is unable to communicate his basic needs. To say any one of them are “better” or “worse” feels like apples and oranges. Why compare an apple to an orange in the first place? Even though they may both be fruits, how they look, the way they grow, the climate they thrive in, are very different.

Yet we do it because we are human. I have a wonderful friend who is in my “gets it” club. Her son and Ryan are the same age, and they both have autism. We don’t compare the exact location of where our boys fall on the autism spectrum, but we seem to both be in a similar place on the acceptance spectrum. Sure, we compare notes and often find ourselves amazed by our sons’ unique yet similar differences, but mostly we support each other. We celebrate our boys’ successes and commiserate the days and moments that they struggle and the days and moments that we struggle. I have shed tears over her son’s successes and struggles as she has Ryan’s. We don’t think about which one of our boy’s is “more autistic.” We celebrate them for exactly who they are and confide in one another as we wonder one day who they will be. Yes, we compare, but mostly we share… with understanding, compassion and support.

I once was speaking at an event for mothers of children with varying disabilities. One mother whose daughter was nonverbal, in a wheelchair and on a ventilator told me a friend with an autistic child explains that she feels “guilty” when she complains about her child’s struggles since this mother whose child may never walk, talk or breath on her own had things so much “worse.” This mother looked at me with love and understanding and said, “I tell her there is no need to feel bad.Her child has autism and wanders away. I am grateful knowing I don’t have to worry about my child wandering and getting lost or hurt.” Apples. Oranges.

Regardless of the degree of differences in abilities and disabilities in autism, we should never be made to feel bad or guilty for our child’s progress. They have worked so hard to get where they are, and their progress has nothing to do with anyone but themselves. Ryan does not look at someone with autism who is nonverbal and uses an iPad to communicate as being “worse” than him. Ryan sees a different way to communicate. Ryan does not believe he is “better” than a classmate in the autistic support classroom. He sees a student who learns better with more support. Ryan does not believe that he is “more autistic” than another autistic friend who is much more social than him. Ryan sees a friend who just likes to chit chat while he does not. This is not because Ryan is hugely empathetic and extraordinarily kind. He just knows that his progress, his struggles has nothing to do with anyone but him. As parents, we can learn from this… no matter where we fall on the spectrum of acceptance.

Ryan may be verbal, mainstreamed and blessed with the gift of perfect pitch, but he is lonely, anxious and recognizes that he is “different.” He is not “better off,” he is not “worse” than other autistic kids. Ryan has strengths and deficits and where he falls on the autism spectrum is his place, his spot and he should never be made to feel badly about this spot he has been placed on, and as his mother, neither should I. There should be no judgment of what makes someone “autistic enough” any more than parents should be judged on what makes them “accepting enough.”

Ryan is smart. Ryan is funny. Ryan is compassionate. Ryan is musically gifted. Ryan is lonely. Ryan is anxious. Ryan is progressing. Ryan is struggling. Ryan is autistic. Ryan is Ryan, and that is enough.

Regardless of where we as parents loving a child with autism fall on the spectrum of acceptance, when we preach and advocate that autistic individuals are “different, not less” than neurotypicals, we need to keep that in mind within the autism community as well.

​Enough is enough.

Follow this journey on The Awenesty of Autism.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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.

2k
2k
17

RELATED VIDEOS

TOPICS
,
JOIN THE CONVERSATION

15 Things I Hear as the Parent of an Autistic Child — And My Responses

4k
4k
17

I have heard some real corkers over my years and sadly been privy to what other parents have had to listen to. Mothers of all children with special needs and autistic children likely hear a whole lot of different things throughout their journeys, so to make appropriate social conduct a bit clearer and more defined, below is a list of what I believe is better not to say — with my responses next to them.

1. “Have you tried giving the Paleo diet a go?” — Why?

2. “My nephew had autism, but he grew out of it.” — Autism isn’t something you can grow out of.

3. “But she looks so normal.” — So what does autism look like, to you?

4. “Maybe she’s just attention seeking.” — In which case, there would still be an underlying cause as to why.

5. “But her eye contact is so good!” — Autistic people can have good eye contact — it is a myth to assume it’s impossible.

6. “Are you sure?” — No, I just make this stuff up to make myself feel good.

7. “But she’s so social!” — Autistic girls can be really social, and people who are autistic can also really enjoy the company of others. They may just tire immensely afterwards.

8. “But all kids do that!” — But do they do it all day, every day?

9. “Everyone is a little bit autistic!” — No. You can’t be a little bit autistic. The diagnostic criteria is long and complex; you are or you are not.

10. “If that is what autism looks like then maybe I am autistic, too!” — Hmm.. Well, maybe you are?

11. “I’m so sorry.” — Why, what did you do?

12. “Why does every child need a label these days?” — Because labels or diagnoses can help struggling children gain support, and they can also help in educating others and raising acceptance for neurodiversity.

13. “She’ll eat when she’s hungry.” — Except she won’t. Because autistic food issues are driven by anxiety and sensory issues, and children on the spectrum may starve themselves if they don’t have access to the food they will eat alongside food that is new to them.

14. “Didn’t Rain Man have autism?” — *Face palm.*

15. “But she doesn’t behave like that around me.” — She may be keeping it together around you because she doesn’t feel comfortable letting it out when you’re around. It is well-known that girls on the spectrum rarely ever melt down at school or kindergarten, and mostly always only around their trusted inner-circle.

So what should you say, instead? Well, how about:

“Wow, you’re a great mom!”

“I hope you take a breather for yourself later.”

“Let’s have a cup of tea and a chat sometime.”

“Your daughter is really lucky to have you as her advocate.”

“She’s an amazing little person, isn’t she?”

“Hello. What are you up to today?”

“I’d love to learn more. What can you tell me?

And finally:

“Here’s the cider/wine/chocolate.”

Remember people, autistic children are human beings — every judgment you make about them, in front of them, they are listening to. They think and feel things just as everyone else does, sometimes they can just feel them in different ways. Every mother of an autistic child can spend a great percentage of every day of her life advocating for her child, and if it isn’t apparent to you that the child is autistic — that might just show you how hard everyone is working together to make the life of the child fuller, easier and happier all around.

If in doubt, simply be kind.

a young girl sitting on her fathers lap on a sandy beach
Jessica’s husband and daughter.

Follow this journey on GirlTribe.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

4k
4k
17
TOPICS
, Contributor list
JOIN THE CONVERSATION

What I Want Others to Know This Month as Someone on the Autism Spectrum

133
133
0

Recently I was asked to speak at New Jersey City University, the college I was accepted at for doctoral school, to share my story of living on the autism spectrum. This is what I had to say:

“Good evening, everyone. April is Autism Awareness Month and I was asked to share a few words about it.

A person who has autism is different and not less. No two people with autism are alike. Some people may have very few differences while others may have more. People with autism have unique abilities. They can process information at such a fast rate at times and are some of the most intelligent people you’ll ever meet.

You may not know this about me, but I couldn’t talk until I was 2 and a half. I have autism. I am just like anyone else. I have a job. I have a girlfriend. I love basketball, movies, “The Fresh Prince of Bel-Air” reruns and being around people like my friends and family. When people touch me at times it can scare me. Loud noises affect me as well. I twirl my hair and my hands sometimes when I have too much information to process in my head. I also have a hard time understanding sarcasm and other people’s perspectives.

While each person with autism has their own challenges, I can say that people with autism just want to be accepted. Autism is a part of who we are. Love us for that and everything else that makes us special in this world, because what often makes us different makes us oh-so beautiful, too. Thank you.”

After this talk I introduced a free screening of the autism-related film “Jack of The Red Hearts” that was sponsored by the Golden Door Film Festival and New Jersey City University.

Follow this journey on KerryMagro.com and on Facebook.

133
133
0
JOIN THE CONVERSATION

To the Fraternity That Became a Part of My 'Village' as a Person With Autism

83
83
0

Dear Alpha Xi Delta,

One message I share a lot about is the importance of having a “village.” In our autism community it is often the parents, family, teachers and therapists of a person with autism who become part of that village. Just like no individual with autism is the same, you can say the exact same thing about every person’s village. Today, I want to share with you though that you will always have a place as part of my village for what’ve you done.

It was in 2009 that I first learned about your work to help raise awareness and funds for those with autism like me. I would see photos of your members at Walk Now For Autism Speaks events on Facebook, doing volunteer work at different autism schools, participating in Coaches Powering Forward for Autism events to spread autism awareness in college basketball, and then if that wasn’t enough, spreading awareness for those with autism on national television for World Autism Awareness Day.

Your work didn’t stop there. Just last year you showed me an act of kindness when you shared with me that you were making me a “FOX.” At first I didn’t know what FOX meant, until one day I decided to look it up. “Friend of Xi” it read on your website. It made me a fan of your fraternity even more.

While reading more about your fraternity over the years, seeing that you’ve grown to over 150,000 members, become a national sponsor for our Walk program, and then have raised over $4 million to support our cause, it has made me realize the lasting impact you’ll continue to have for years to come.

But you’ve become so much more than just a village to people like me who are on the spectrum. You’ve become a part of my autism community family. Each one of your members has shown me kindness and respect. Something I think we can all show a lot more of for anyone in this world.

If you ever read this, I just want to say thank you. In college, I joined a national service fraternity to help others. While I was a brother in that fraternity, I learned so much about the importance of giving back like you have for so many. I can’t thank you enough for your impact.

girls showing support for Alpha Xi Delta

To learn more about Alpha Xi Delta, click here.

A version of this post originally appeared on Kerrymagro.com. Follow this journey on Facebook.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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.

83
83
0
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.