Miriam's children

When a Stranger Asked Me 'Is Your Other Kid Normal?'

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“Is your other kid normal?”

How would you feel if someone asked you that?

Before I let you know how I reacted though, I want to start by looking at the dictionary definition of “normal.”

According to The Oxford English Dictionary, the word “normal” means: conforming to a standard; usual, typical or expected.

In other words, this stranger was implying my son is not standard, usual or what was expected. He does not fit society’s stereotypical idea of a 7-year-old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love how he is different. I love that he does things in his own way, at his own time and that he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yogurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all “normal” things that 7-year-old boys do!

He has brown hair, hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my son and saw his differences. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child. Maybe I should be sad I have to support him so much at 7? Maybe I should be brokenhearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well, a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

But now, I see my son differently. I see him as beautiful. I see him as wonderful.
He is normal. His sister is normal, too.

Normal according to the dictionary is conforming to a standard. If you see the standard as “being human,” then there really is no such thing as not being normal. So do you want to know how I replied?

I simply smiled and said softly, “Yes. I am blessed with two amazing children. Thanks!”

Miriam's children. Her son makes a goofy face.
Miriam’s children

Follow this journey on Faithmummy.

 The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? 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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Why I’ll Never Say Our Version of Hard Is Worse Than Yours

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One thing that shocked me the most upon becoming a part of the autism community was the great divide and the tension that exists. You don’t have to go any further than the comments section on an autism blog to find the division and anger. I see the derisiveness in our support groups, in our special education classes and in our Internet discussions.

I see support groups separating into functioning levels, as parents with kids on opposite sides of the spectrum aren’t always able to relate to one another. Amongst parents with children on one end of the spectrum, there can be a constant one-upping. This constant bickering over whose worst days are worse; over which child has the most challenges. Are people really arguing about this or feeling slighted if their child isn’t “severe enough” to be considered on this end of the spectrum?

Well, in fact, we are. Maybe I should give you some context. How many times have you heard or read:

“At least your child talks.”

“Oh, he’s mainstreamed some of the day? So he’s just quirky, right?”

“If you don’t deal with aggression on a daily basis, you don’t know the autism I know.”

Sound more familiar now? There is nothing wrong with acknowledging that autism is a broad spectrum, and it affects everyone differently. But when we start belittling others’ struggles and day to day challenges, we start hurting our entire community.

I was reading comments on one of my published pieces the other day. One reader said something like, “The person who wrote this clearly has a high-functioning child. They don’t deal with self-harming or aggression or destruction.”

Except we do deal with self-harming and aggression. Every day. We do have our house torn apart and things broken mid-meltdown. The first thing I thought: How dare this person presume to know what we go through day-to-day based on one article, based on one day, one snapshot of our lives.

My second thought: Damn, I think I have said something like that before.

I remember a couple years ago arguing with a self-advocate and saying something to the effect of, “Well, if you are sitting there typing your thoughts, you have no idea what severe autism is like. Your opinions don’t apply to me and what my kid goes through.”

How dare I presume to know what someone else’s autism is like. That autistic adult could easily be my son in 20 years, possibly able to type his thoughts, but also having gone through years of therapy to get to that point. They could easily be someone who can type their thoughts but still can’t speak or someone who still struggles with so much anxiety they cannot leave their house.

I’m sure at some point we have all been on our side of this divide, and we cringe when the other side tells us we don’t have a right to feel the way we feel. When people unfollow my page because they see a video of my son talking and they assumed he was nonverbal like their child, it hurts. Especially as I go through his re-evaluation results this week and see that my beautiful 5-year-old got “poor” or “very poor” marks in almost every category. Don’t presume to know another family’s struggle.

When my friend tells me her son has attempted suicide again because he is so very aware of his differences and isolation, my heart breaks. And it breaks even more knowing that before I knew her, I judged that side of our divide. I thought “Are they really complaining their gifted child isn’t challenged enough in school and is having behavior issues? I would love to have that problem.”

My child may never live on his own, but maybe he will find his version of happy, and that will be enough. Your son may never say the words, “I love you,” but maybe his smile and his hugs are enough. My son may never stop having explosive moments, but maybe he will learn to get through them without hurting himself or his family. Your daughter may never have a lot of friends, but maybe she will find great satisfaction in what she does for a living.

There are going to be hard days, and although our hard may look different than yours, I will never discount your feelings or experiences because they are different than my own. We’re all in this together, and I believe if we spent a little more time building each other up rather than ripping the other down, our community could move mountains.

boys walking on grass
Mandy’s sons.

Follow this journey on From the Bowels of Motherhood.

The Mighty is asking the following: Write a love letter to another person with your 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.

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3 Tips for Learning To Adapt When You Have Autism

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Hey Andrew Levin here, with a video about learning to adapt when you have autism. I believe this is an important aspect of life and as such, it should be something that everyone does.

If you have an idea for a video you’d like made, send me a message at [email protected].

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When I Stopped Trying to Be Something My Brain Wasn't Wired to Be

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Labels are words we use to describe ourselves, a thing or someone else. Some people think labels put you in a box and limit what you believe you can do. They can. Some labels hurt your feelings. They do.

In scouting upcoming opponents in basketball, I use labels a lot: left-handed, shooter, driver, quick, smart, athletic, physical, strong. For me and the players (hopefully) they are helpful. The labels help the players understand tendencies and what the opposition is most likely to do. As for the labeled, in this case, they have some control over their labels. Your freshman year, you could be solely a spot up shooter, but you could improve your skill set over the summer to become a more complete player to rid yourself of the label “shooter.” Then, I have to add more labels after your name: improved, quicker, stronger. In basketball, best I can tell, labels are neither good nor bad. They are simply the truth.

When I was growing up, people used labels to describe me as well: smart, tomboy, left-handed, nerd. I can see how people say labels put you in a box. People told me I was smart, so I was. They called me a tomboy, so I was. But I always had been left-handed.

Some labels are hurtful: stupid, slow, dumb, the R-word (which I hate).

I don’t know which comes first. If I was the thing or if people called me the thing. If you are the thing or if people call you the thing.

This I know: Labels shouldn’t be used to demean another human being. You should never use a word that makes or is meant to make a person feel less than human. If that’s what you are using labels for and that’s what you are limiting labels to, then they’re bad. No contest.

But what about the good ones? What about the ones that encourage you, that empower you, that give you greater self-belief and confidence?  What about the labels that promote self-discovery, peace and learning?

For me, that’s what the labels of ASD, obsessive compulsive disorder and ADHD did. They gave me a “why.” Growing up, I didn’t know why I did certain things things. I didn’t know that not everyone’s brains carried on a never-ending conversation I hoped never spilled over outside my head. I didn’t know my head wasn’t like most people’s. These diagnostic labels taught me so much about myself.

They helped me learn about other people who had the same difficulties and how they coped. These labels gave me an inner peace I hadn’t felt before. Knowing what was “wrong”/different helped me learn about my strengths and weaknesses. One of my favorite sayings, which I learned from one of my favorite people (Coach Jenny): “Know your strengths and stay in your lane.” These diagnostic labels helped me learn more about the areas I tend to struggle with and the areas in which I excel. What a difference that made! Learning I would likely struggle with the recruiting area of college athletics allowed me to change my career path to stay in areas where I excel, video and stats.

Recently, I was asked how I expected to get a job since I struggled making eye contact. Before these labels, I would have answered I didn’t think I could find a job. Now: I know I can. I know that my abilities, my past experiences and the people for whom I have worked speak much louder than lack of eye contact. And if someone thinks that eye contact is more important, then I probably don’t want to work for them anyway!

I stopped trying to make myself be something my brain isn’t wired to be. I learned my brain was wired differently; not necessarily wrong, just different. The hopeless feelings went away and I became hopeful. Instead of focusing on all the things I couldn’t do, I started focusing on what I was good at and what made me feel good. I started selling my work instead of selling myself. I became more confident in my abilities.

You get to pick how you use labels. You can make them limiting, demeaning or hurtful. You can simply use them to state facts. You can use them to lift up, to empower and to encourage. You can take a label that was meant to be limiting and make it empowering. You can take a label that was meant to be hateful and ignore it; the user is likely ignorant of his/her own ignorance. Take a word that was meant to ruin your life and instead let it empower your life. You can turn a diagnosis into peace, education and acceptance.

Follow this journey on Erinmmckinney.
The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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10 Things You Can Do for a Parent Whose Child Just Got an Autism Diagnosis

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Recently we celebrated the birthday of my youngest son Zach, who has autism. Families and friends from both sides of his genetic tree came to usher in his last year in single digits, while his almost teenaged older brother with severe autism, Justin, looked on.

All in all, the event went well, with my littlest love thrilled with his gifts and sad all the hoopla and his four parties were over.

Yes, I said four parties.

I often get reflective after these birthday parties for my sons, am prone to remembering years when things hadn’t gone so well. There was the year we tried to keep Justin on the computer when Zach was opening his presents, which failed miserably, resulting in meltdowns for both. At another party, my husband and I ended up having to carry Justin up to his room for some action I’ve totally forgotten, whisking him past a dozen or more suddenly hushed adults.

Things have not always remained constant at our parties, but one thing has remained consistent with both our families and friends since Justin’s diagnosis12 years ago, something for which I will always be eternally grateful.

No judgment.

There are many other things which, looking back, I am eternally grateful for, and if you’re reading this and are a family member or a friend of a parent whose child has just received an autism diagnosis, I hope you take a minute and peruse. My husband and I were very fortunate with the way the people in our lives reacted.

1. Don’t judge.

You may not understand why your friend/family member is handling her child’s meltdown/insomnia/refusal to eat/need to line everything up in the way she is. Trust me, she knows better than anyone what to do, and she knows her child best. Only offer suggestions if she asks for them.

2. Offer to help, and mean it.

She may be so overwhelmed she might not even know where to start asking for help. Give her time. She may need you to go on a doctor’s visit with her, or watch her child while she takes siblings to another appointment. She may just need to get out of her house for a few hours and take a break. Whatever she needs, try to be there for her, and
be there multiple times.

3. Initially, don’t send her research.

Trust me, she will be logging in a few million hours on the Internet. Hold onto whatever you find until things have calmed down a bit and you feel she can be receptive to your help.

4. Never compare her child to your second cousin’s neighbor’s high school sweetheart’s child with autism.

Autism comes in many shapes and sizes. Just because somebody’s child talked at 7 does not mean your friend’s child will. Comparisons are odious.

5. Don’t tell her he/she will grow out of it.

Autism is a lifelong neurological disorder. There are challenges and differences across the spectrum. Respect that.

6. Make them a meal.

Take the time to bring them dinner if you live nearby. Random acts of kindness cheered up my family immensely in the months following our sons’ diagnoses. They were bright spots in our day when facing meltdowns, sleeplessness, and mounds of paperwork for early intervention and school placements. Make the effort.

7. If you know of anyone with a child with autism who might be a positive support for your friend, hook her up.

The key word here is “positive.” She may need someone to vent to, who may even have suggestions and referrals to services and people who can make her life easier.

8. If the family needs money and you can help, offer it.

Insurance reform has helped immeasurably in covering autism therapies, but there may be a lag time before they kick in. Offer to fill in the gap if you can.

9. Just listen.

Don’t share with your friend that your neurotypical child had sleeping/eating/behavioral issues, too. You have no idea how long your friend/family member might be dealing with these challenges. Just be there as a sounding board.

10. Get both parents out.

Find a way for them to enjoy a peaceful dinner or a movie once a month. It can help both them as individuals and their marriage immensely. They may protest at first, but they likely need it whether they know it or not.

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.

Lead photo source: Thinkstock Images

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Why We Pursued Our Son’s Autism Diagnosis, and Why It Doesn’t Define Us

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If I am being honest, I have always known in my heart that he was wonderfully different. Quirky, I used to say. But it wasn’t until this last February, shortly before his 8th birthday, that we pursued an answer.

Why, you ask? What changed? We were at a birthday party for my son’s best friend, and his cake had Hot Wheels on it. My son is intensely focused on cars, or really anything with a motor. The birthday boy went around the table, letting each child pick a car to keep. My son wanted a very specific car, but by the time it was his turn to choose, it was gone.

I had been watching from across the room, my body tense, as I was already anticipating what was to come. I watched his chest heaving, his tiny fists clenching and un-clenching, tiny beads of sweat forming on his upper lip, trying so hard to control how upset he was. But he couldn’t control it. He needed that car. He had to have that car.

What a brat, right? What a spoiled, entitled child! It wasn’t even his party! How dare he! What kind of crappy parenting goes on in a house that raises a kid like that? Except that he isn’t a “brat,” and we’re doing our best, thank you very much.

So I watched this scene unfold, and I couldn’t ignore the stares from everyone else in the room watching my son. I realized with a sinking feeling in my gut that his friends noticed, too.

In truth, so much of this process has felt like a gut punch — the evaluation, the diagnosis, the terminology, the criteria and guidelines and mandates and recommendations. All of it was a confirmation of the quiet whispers that have lived within me.

My sweet, sensitive, talkative boy has autism.

There, I said it.

And so began my journey to seek out some truth. Because one day, I knew he would come to me and want to know why he feels different, why he processes differently or behaves differently, or talks differently. And I am going to give him the dignity of having an answer. Of having a name and a plethora of knowledge and research and resources and names of people just like him and a whole group of us who love him and are here to encourage him and assure him that he is exactly who he was born to be. That he is bigger than autism. That the whole of him is not defined by the DSM.

The hard truth is the days since have been difficult. There is a little bit of guilt for me in saying that I have been grieving the loss of what I thought his life would look like. Life is hard for everyone, of course, but life may be extra hard for him. And it makes me sad because, well, because I am a mother. I am his mom, and I would live 100 lifetimes of heartache, if only he didn’t have to live one. Because we naturally as parents want the world to be fair and just and kind to our children. For them to guard their hearts out of caution, but never out of necessity.

This year has brought us bullying and teasing and confusion about why someone wouldn’t want to be his friend. It has brought struggle. It has brought heartache. It has brought the soul-crushing moment of hearing your child tell you they wish they didn’t know anything about autism, because then they could just be like everyone else.

But it has brought peace, too. It has brought awareness and so much knowledge. There is power in that knowledge, in the slow stripping away of fear and uncertainty. A diagnosis isn’t about learning how to “fix” my child, or how to make him adjust to our narrow confines and ideas about what the world should look like. But rather, it’s about how I can adjust my world to fit his. To learn from him, to grow with him, to nurture him. What I want is for the world to fit into his parameters. Is that realistic? Perhaps not. But here, in my small corner of the universe, I can keep accommodating his unique needs and celebrating his differences. And the truth is, I only have room in my life for the people who are on board with doing that, too.

My sweet boy recently shared some really beautiful insight into his heart. After tucking him into bed the other night, I was leaving the room and I heard his voice: “Mom, having autism is like having a freckle. It’s only one small part of me, but I wouldn’t be the same without it.”

Yes, son. Just like the sky is lit up with thousands of stars, you light up for thousands of reasons, one of which happens to be autism.

mom and son making funny faces
Sara and her son.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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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