Why I Stopped Trying to Make My Son ‘Typical’

2k
2k

When Morgan was first diagnosed with autism, my husband and I were in “fix it” mode. Our end game was that Morgan would be indistinguishable from other children.

We wanted him to pass for typical. We wanted him to be happy at all costs, as long as those costs were within our scope of reasoning.

We were determined.

I didn’t care that the little voice in the back of my mind screamed this approach was wrong for us. Nope, it didn’t matter. My son’s voice and the atypical way he spoke? That needed to change. I completely neglected to remember that I should be thankful to be hearing words, finally. Those fidgeting and flapping fingers? Those needed to stop. All of the books said so. Typical kids don’t do that.

Scores needed to climb higher. He needed to blend with the other children. He was miserable — so were we. The more I pushed for him to be less of an individual and part of a herd, the more behaviors we saw.

This didn’t last long.

I (I say “I” because my husband traveled a lot in those days, and I was the primary caretaker) wasted time and energy. I didn’t see that this wonderful boy who had been in front of me the entire time was great, just the way he was. He needed support, not to be changed. The only changes that needed to be made were the parenting and teaching methods being applied to him.

I don’t remember when the epiphany occurred, but when it did, breathing became a bit easier. Morgan began to smile more. We, as a family, enjoyed life more. We understood each other better. There was no more suppression of autism, there was only expression of Morgan’s truest self. Sometimes his truest self wasn’t the happiest child or the nicest, but he’s been himself and not some representation of what I wanted him to pass for. This begins with allowing him to stim and extends to indulging him in his love of Thomas the Tank Engine at the age of 10. We used to fight against those things.

He’s in what is considered middle school here and with it comes clubs, a dance or two and some pressure to fit in. Morgan doesn’t really feel that pressure, I think, but he misses having friends. A teacher, when I was chatting with her, offered up some suggestions that would, in a sense, eventually allow Morgan to “fit in and pass” as a typical child. I laughed.

I told her that “being typical” isn’t possible and therefore, isn’t on our radar. I don’t want my son to pass for something that he is not. Morgan is the most genuine person I know, and I want him to stay that way for as long as possible. I don’t believe that teaching him to mask his personality, his thinking, his mannerisms or his truest self is the best way to go about things. The teacher saw my points and agreed.

I can’t wash my son typical. I don’t want to. I don’t want to compare him to his typically-developing peers and feel sad or long for something we’ve never had. I don’t want to push him to be something he’s not. Instead, I would rather push him to be the best he can be. The less I’ve pushed Morgan to “pass,” the more I’ve allowed him to play with his autistic peers, typical peers who get him and just “be,” the happier he’s been.

That’s the end game for me, right now. Happy.

I understand why, out of ignorance, I wanted my son to assimilate and “become typical.” I thought that, with enough hard work and diligence, he could figure out how to be typical and happy. My very literal brain was taught by society that my son would never be happy so long as he was autistic. That he could never be happy as an autistic.

I’m so glad that I stopped listening to what I was told. Society is wrong.

Being atypical is not easy.

Being autistic is not easy.

But you can be happy.

It just takes the right environment.

Path less traveled

This post originally appeared on Deciphering Morgan.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k
TOPICS
JOIN THE CONVERSATION

Parent Like There’s No One Watching

145
145

My friend told me once that I could find the silver lining in anything. Here’s a big one that I’ve found: being a parent of an autistic child has humbled me and made me a better parent. Specifically, I’ve stopped caring about what strangers think about my parenting skills. It took me a lot of searching to find that particular silver lining, and it wasn’t easy to find.

2014-07-08-IMG_20140620_191702300x300

Sometimes Bella can’t handle all the people at the store. Sometimes she doesn’t want to leave the spring fair at the elementary school. Sometimes she can’t share or take turns the way other kids can at her age. It could be anything or nothing at all. But her reaction is often huge, her meltdowns epic and when they’re public meltdowns, well, you can imagine how fun that is. I’ve been screamed at full-blast in Target over a toy I didn’t buy. I’ve had to coax an anxiety-overloaded child off the floor at Jo-Ann Fabrics because she’d just had enough. I’ve left parks carrying my child like a sack of potatoes kicking and screaming because she wouldn’t leave any other way. I’ve been slapped, scratched, kicked and almost bit while strangers watched (or pretended not to watch but lingered just a little too long to leave any kind of doubt as to whether or not they were shopping or watching).

It’s not always meltdowns, though. Sometimes it’s just all the quirky things you don’t notice around the house but are glaringly obvious when you venture out into the real world. I had to tell Bella once that no, not everyone in the store thinks it’s funny when you stand in front of their cart, put your hand up and shout, “STOP!” Also, kids tend to notice when your daughter licks every doorknob in the hallway at morning drop-off. Her eccentricities are amusing at home but were mortifying in public. I found myself saying, “No, Bella…” the entire time we were out, which only aggravated me and put her on edge.

I used to walk out of public places feeling embarrassed and humiliated. Partly because of how my child behaved but also partly because of how I behaved. So often, I found that I was parenting for the benefit of those around me. I felt their eyes watching me, judging me and so I would perform for them.   said what I thought I should say, what I thought people were expecting me to say. Instead of calmly and patiently waiting for Bella to cool down before talking to her, I would jump the gun and reprimand her when she wasn’t ready to process what I was saying. I would speak harshly to her so people could hear that I was in charge, that I was doing the right thing — even though the right thing for Bella doesn’t look or sound anything like what the right thing might be for other kids.

My worst parenting moments, the ones I am least proud of, happened because I was trying to impress a bunch of strangers I’ll probably never see again.

One day, after a particularly awful meltdown at the grocery store, I was driving home and had a simple but important thought flash in my head:

I’m not responsible for those people.

I have no control over those strangers’ reactions or perceptions of me. To put it simply, who the hell cares what those people think? The only people’s opinions that matter, the only people I am responsible for are my kids. I’m only beholden to them. I care about what they think of me and how they feel. No one else. Those lingering people in the store can just f**k off.

Once I stopped trying to impress strangers, my life got a whole lot easier. I don’t worry about what people will think of Bella and her behavior in public anymore, because I seriously don’t care. I focus only on my kids and how they’re feeling. If they’re happy, I’m happy. If they’re upset, then we deal with it the same way we would deal with it at home. Sometimes that means I have to stand in the store and wait a minute for Bella to pull herself together. Sometimes it means I have to stay calm and not react when my daughter tries to claw my arm. I know it’s because she doesn’t know what to do with the overwhelmingly intense feelings she’s experiencing, and reacting physically towards me is the only way she knows how to deal with those feelings. Other people don’t know that, but I don’t have to explain myself to them. If someone says anything dumb, I ignore them — I literally pretend like they’re not talking. If someone lends sincere help, I accept or decline politely (depending on whether or not it will make things better or worse, in my opinion).

People stare, and I’m sure some people go home and judge the hell out of me. Why should I care? I get to go home and feel good about how I treated my children.

2014-07-08-IMG_20140521_173341300x300

This girl’s opinion of me means a whole lot more than your opinion, lady.

This post originally appeared on 649.133: Girls, the Care and Maintenance Of. It was also featured on BonBon Break and The Huffington Post.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

145
145
TOPICS
JOIN THE CONVERSATION

Precious Photos Show the Unparalleled Bond Between a Girl With Autism and Her Cat

2k
2k

We’ve read and reported on a few stories about therapy dogs. This story is about a cat, though — one who’s helping a little girl with autism connect with the world. cuddles-iris-and-thula

In the photo above, 4-year-old Iris Grace, a child who’s made headlines before for her incredible paintings, snuggles up to her four-legged best friend, Thula (pronounced “Too-la”).  The Maine Coon joined Iris’ family in February, according to her mom, Arabella Carter-Johnson. Since then, the pair have been inseparable.

“It’s incredibly comforting for me to know Iris can laugh and play, just be together with no pressures, no struggles with language,” Carter-Johnson told The Mighty in an email. “They just understand one another.”

iris-playing-with-thula-handshake Up until last December, Carter-Johnson had given up hope on finding Iris a faithful friend. Despite her mother’s efforts, the 4-year-old showed little interest in socializing — until she met a family friend’s cat. And when Thula arrived a few months later, their connection was instant.

10498687_886323834715659_2077705486900838412_o

10478427_873982355949807_4676785710891739280_o

With Thula by her side, Iris wakes up easier each morning. Usually, she’s nonverbal, according to her mom, but in the last few months, she’s talked more and more. When Thula tries to jump on her iPad, Iris will say, “Sit, cat.” The two always sleep side-by-side.

“If Iris wakes during the night, Thula is there to settle her,” Carter-Johnson wrote on her blog. “It’s as though she instinctively knows what to do.

10257567_855831301098246_5562707804873168892_o

Iris’ mom hopes that when people read her daughter’s story — whether it be about her friendship with a cat or her paintings — they’ll change any preconceived notion they had about autism.

“I want people to see the potential in autistic children,” she told The Mighty. “It’s all about opportunities, both Iris and Thula are proof of that. Who would have thought a [little girl] would inspire millions worldwide with her paintings or a cat could ride on a bike and take baths happily with a child?”

793863_838507829497260_3243959826667887394_o

964049_834505676564142_7066978315889973905_o

1655096_803798696301507_1949506949_o

Bonus! Watch the video below to see Iris’ amazing painting talent. And for more photos of Iris and Thula, visit Iris’ Facebook page. All photos via Arabella Johnson-Carter / IrisGracePainting.com.

h/t BuzzFeed

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k
TOPICS
JOIN THE CONVERSATION

On Learning My Second Child Can Move Her Legs

309
309

672470C9-42A5-47FB-A98D-AC765C9937E9_zps6xeqgbsz (1)

My daughter can move her legs.

I figured she would. Why wouldn’t she? Lightning doesn’t often strike the same place twice.

And by lightning, I mean spina bifida. And by place, I guess I mean… me.

I knew she would move her legs. Still, I was not prepared.

For the triumphant force of it. For the sight of kicks and squirms. For the ultrasound tech’s cheery exclamations saying, “Look at those legs move! She is kicking up a storm in there…”

I wasn’t prepared for how those words, lovely and true, would tear at my heart. It was just too much, and I wept in that soundless way – the way that collapses your insides and leaves your belly tensed and quaking. The crinkling of the butcher paper gave me away. The room went silent as my husband and I joined hands.

But it’s not what you think. Or at least, it’s not what I would have thought. If someone had asked me to predict how I would feel the moment I heard those words, I would have said one word: relief.

But relief was not the thing that hurt. Neither was joy. Neither was gratitude.

I did not feel relieved at all. I felt torn. And protective. And jealous somehow. I was watching my daughter flit around the screen, but I couldn’t stop thinking about my son.

The thing is, my daughter still feels abstract. My son does not. I know my son. I know him in a way that I do not know my daughter – not yet. And I know that I love him. I know he has value. I know he will face challenges in this life that his sister will not. Somehow (although even as I write this it sounds strange), rejoicing over legs that move felt wrong. After all, my son can’t move his legs – but there is so much more to him than that.

61527BE5-2591-4D37-81D0-DF1913C4D9DF_zpssttrrkpr

I guess I didn’t want to admit that legs matter and when those joyful words fell upon my ears (“Look at her legs move!”), I felt a protective urge to say – so what?

But I knew “what.” I knew the moment I heard that knee-jerk question burst inside my head. The “what” is the running. It is the hopscotch and the trampoline. It is taking the stairs. It is reaching the highest shelf.

Still, to me, those things are unremarkable. They are secondary. They are not the real “what” – the “what” that I wept for.

The real “what” is in how she will be treated – because this world is designed for people like her. And it will value her automatically, in a way that it is still learning to value her brother.

Relief was not what moved through the air that day. I think that’s OK, though. There was still wonder. There was still anticipation and excitement for this new life, and we were thankful. I am becoming a mother of two – two people who will be different on the outside, just like on the inside. I am still learning what this feels like.

I should mention that my daughter is beautiful – I can tell already. She will have her own struggles and flaws. Her life will not be completely typical or completely perfect – at least, for her sake, I hope it won’t be.

And she will move her legs.

But there will be so much more to her than that.

***

For those of you with multiple children, did you ever worry about (or feel protective of) your first while waiting to meet your second?

If you, like me, have a child with a disability, was it hard knowing how to feel about baby #2 being “typical?” Did you feel relief? Joy? Mixed feelings?

This post originally appeared on What Do You Do, Dear?

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

309
309
TOPICS
JOIN THE CONVERSATION

To the Doctor Who Diagnosed My Daughter

685
685

1832177 Dear Dr. M,

It’s not like I hadn’t heard of you before we walked into your office that day. Your reputation as the best developmental paediatrician around is why we stood in front of you. I had done the research on you, both professional and personal. I knew who I was looking at, but I still stared a little too long during our greeting in the hospital lobby. I wanted to really understand the woman who held so much power over our world. The hospital lobby was drab and dated. It crossed my mind that the hospital was desperately overdue for a makeover. I escaped my current situation and imagined the steel and glass it would take to update the entire structure. I became abnormally interested in the architecture of the hospital as you and my husband, Alex, exchanged pleasantries. I was safe as long as I stood and stared at the “modern” design of an architect who peaked in the 80s. I didn’t want to move toward the elevator, as I would then be committed to this assessment, but when Alex readily stepped in behind you, we were on the move. I stepped carefully along the yellow line that led patients to the x-ray departments? Specimen collection? Wherever. It was broken in spots from years of people dragging their feet along it. When we reached the elevator I lingered on this line a little too long. You and Alex moved swiftly into the waiting elevator. Kate, happy to be in Alex’s arms, clutching her Buzz Lightyear. I reluctantly stepped off the line and into the elevator.

You were smiling at Kate. She smiled back. The elevators had mirrors inside so I was able to surreptitiously watch you interact with Kate. I took in your makeupless face.  Good, I thought. She is such a scholar that she has no time for trivial things like cosmetics. Surely, an intellect like her would not falsely diagnosis our Kate. This would all be straightened out in a matter of hours.

You led us down the hall towards your exam room. We walked past sick children. We walked by mothers and fathers so damaged by their child’s illness that they appeared hollow. I willed myself to prioritize our current scenario. I shamed myself when I could not. You’ll be surprised to know how many thoughts violated my mind during that short walk.

When we entered the room Kate happily greeted the lady that waited inside. A speech pathologist as I remember. She didn’t interest me nearly as much as you. I knew she would be aiding you in your observations on that day, but she appears faintly in my memory while you stand out vibrant and alive as if it were yesterday. The room was large and bare. A small table and three chairs sat haphazardly in one corner as if they were moved hastily out of the way. The floor was carpeted in an industrial maroon that bore the signs of years of traffic in and out of that door. How many people were crushed inside that room? How many times did a parent stare at the barren threads of this offensively antiquated carpet to avoid crying in front of you? How many succeeded?

Kate chose you that day. Kate chose you to be her person in that room. I had originally considered that act of social interaction to be a wonderful reason for you to determine that she was far too social for autism to be a consideration. Oh, how wrong I was. I would soon obsessively research autism and its many characteristics to the point where I could detect it in someone I saw walking down the street. Not this day, though. This day, those myths that I work so hard to dispel now, were giving me false hopes, and I liked it.

You asked questions of my husband and me. None of them surprised me. I had rehearsed my answers a million times in the weeks leading up to the appointment.

Does Kate make regular eye contact?

Of course. She is very friendly. (She never could hold it for long, but that wasn’t the question you asked, was it?)

Was Kate up on her toes, at all?

Not that I had ever noticed. I looked to my husband for support. I knew he was less than obsessively attentive to these kinds of things. He was an engineer. I worked with children with autism all day long. I knew what that could mean. He concurred. I exhaled.

You smiled sweetly. Not in pity or exasperation for my obvious denial but in a kind gesture of empathy for the battle you knew was overwhelming my brain.

Does she show interest in her peers?

She would, but she is new to her daycare. She doesn’t know of them yet. She is not yet 2. Do 2-year-olds pay attention to peers? I tried desperately to imagine our eldest daughter, Grace, at age 2. The image crushed me without warning, as Grace was highly verbal and was speaking in full sentences by now. I quickly pushed that image away. How unfair that something that once made me so proud could break my heart at that moment.

The questions and observations went on for hours. You made notes. Your speech pathologist friend made notes. I watched your pen move looking for the tell-tale movements of writing a capital letter A. You were careless with your notes. You scribbled them out quickly. This suited my profile of you, but it offended me in a small way, too. I wanted every word you wrote about Kate to be meticulous. I wanted some control.

When you were finished with your observation you left us in the room sitting on the floor with Kate. I played half-heartedly trying to show Alex that I was convinced this was all a big misunderstanding. He did the same. You were gone only minutes. This, I knew, was not a good sign.

You entered the room and motioned for us sit in the chair opposite you. Kate sat on my lap. Kindly, the very first sentence out of your mouth was this:

Kate has Autism Spectrum Disorder.

I had not prepared sufficiently to hear this. Who could, I guess? I heard that sentence, and then I heard nothing else. I signed some papers. Your eyes were so kind. I’m sure you would have walked me to the car if Alex had not been there. You talked for a while. I stared at your kind eyes some more. My husband answered you. Was the speech pathologist still there? I can’t remember. My heart hurt. Not my feelings. The heart in my chest ached. It rejected your words. My brain was nodding along with you. I was dizzy. I held in my tears.

It was my mother’s birthday, you know. We were heading to her birthday party directly after the appointment. Just a small party. Family only. It was a 30-minute drive. We didn’t speak. Alex held my hand. Kate played happily in the back.

Upon arriving at my mother’s house for her party we piled out of the car. I walked in first. I was anxious to get it over with. I walked in with my eyes down. When I raised my head my brother was looking at me with those same kind eyes. Then the tears came.

It’s been many months since that day. I’ve stopped crying for the most part. I tend to cry only in my car now. It is the only place I am ever alone. I don’t cry because Kate has autism anymore. I cry because I hate to see her struggle.

I wanted to thank you for your kindness that day, and I really wanted you to know that Alex and I have since found relief in this diagnosis. I have stopped obsessing over milestones. I am no longer consumed with dangerously unprofessional internet checklists about autism. We are getting to know Kate so much better now that you have started us on the path to learn how to communicate with her.

So, thank you, Dr. M. Thank you for understanding that Kate wasn’t the only one who struggled to make eye contact on that day. Thank you for intuitively reaching out with small gestures of kindness because something as personal as a hug would have had me wracked with sobs. Most of all, thank you, for promising to follow Kate as long as we need you, because we surely need you now.

Best,

Kate’s mom

This post originally appeared on Go Team Kate

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

685
685
TOPICS
JOIN THE CONVERSATION

Here’s What Happened When I Decided to Reach Out to Strangers

97
97

In the 1980s there was a national advertising campaign for the phone company AT&T.

Reach out, reach out and touch someone! Reach out, call up and just say hi, urged the happy singing voice on the television commercial. The campaign was a huge success that resulted in a large increase in sales for the phone company.

This commercial reinforces an ideal that still rings true today. Inherently we were put on this earth to connect with other humans. Sometimes we make life about the price of gas or work or arguing over religion or politics, but at the root of it all we want to listen and be heard. We want to be understood and related to. And with the advancement of technology and the quest for connection, some of the heart and intention we carry gets lost. Our eyes remain down on our phone. It makes me wonder what the future will look like. I wonder what will come from the loss of intimacy that a cellphone can bring into our life.

And it’s so easy to blame technology or social media or others, but in doing that it’s the same as saying we are hopeless to change. Together we can be the change. We can change our community, our bubble, our nest — and in doing so, change the world our children see. We can feel less alone and more connected. I have five ideas we can implement this week to reach out and touch someone.

1. Wave to random people all day long. People waiting at bus stops, people out for walks, people driving in the car next to yours. Your neighbor. The cab driver. The trash man. Try it. It’s awesome. Isn’t it amazing that we all get to be humans here discovering earth together? I know! Astounding! Of course I would never suggest you do something I hadn’t tried myself. I did it this afternoon while in the car. I smiled and waved at everyone.

_MG_9894_zpsde891eee

I was nervous and felt odd at first. Why is it so weird to reach out to people we don’t know? I was afraid I was going to look like a weirdo — which I did — but so often we look like a weirdo by mistake. Why not do it on purpose?! The first gal smiled really big and waved back! I loved her. Woman number two looked at me nervously and then abruptly looked back forward, hands at ten and two. Man three looked at me like, “How do I know you?” as he smiled and gave a half wave. It was so fun I’m going to try it again tomorrow. I dare you to try it too.

2. Give away kindness like it’s free. Because it is! Do things for old people. Old people love kindness because they have already figured out it’s the key to everything. Take up their trash cans from the curb after trash pick up. Offer to walk their dog. Bring a teacher-friend dinner as they try to adjust to the new back-to-school schedule. Engage in conversation with people you otherwise usually wouldn’t.

_MG_9900_zps22da2aa3

The place where the boys go to school/therapy has the most beautiful grounds. Green, lush, immaculate. Perfect. I feel so good when I walk through. There is almost always a gentleman outside pruning, trimming, cleaning and planting. Today I smiled and said hello as I walked the boys in. The man looked up and then quickly went back to his business. Hmmm… I thought.

On the way in picking them up I said to him, You do such an amazing job keeping this place beautiful, and he gave me a quick half-nod and began watering the bush in front of him. He’s a little cranky, I decided. He was so cold to me that I began to wonder — Does he have special needs? That would make sense. I asked the school director. He’s deaf; he reads lips, she told me. And it was one of those profound universe moments. The way people behave is not about you, Chrissy. It’s about them. He wasn’t ignoring you, he wasn’t cranky, he wasn’t rude. Don’t assume anything. So next time I will be sure to engage and communicate in a way that works for him. That God! He sure is funny planting all these lessons right in our very own little garden.

3. Write a letter. Like with paper. And a pen. You can also go to the store and buy seven cards to give away one a day for a week.

IMG_6507_zps7902e142

I love this line of cards from Compendium Inc. I get them at Cost Plus World Market. They are usually my go-to just because cards. Their motto is “live inspired.” Amen.

Or, dig up the cards you already have in your house and use them. Who cares if it’s a birthday card and it’s not their birthday? Or if it’s a “Get Well Soon” card and they aren’t sick? Not only are you surprising someone with fun mail, you are making them laugh with your funny, not-meant-to-be-funny card. There’s one thing better than getting fun mail. Sending fun mail! So be selfish and give yourself joy! Write a letter!

4. Make a phone call. There are some natural phone talkers. I am not not one. When the boys are with me I can’t really talk. Or listen. At all. Or my walls end up getting covered in black Sharpie. True story. But every so often it’s divine to connect voice-to-voice. So often we will say, I wanted to call, but I knew you would be busy, and I didn’t want to bother you. This week — I say bother. But here’s the catch. If you get voice mail say, You don’t have to call me back. I just wanted to call you and say: blank. (You have to come up with the blank part.) I can’t tell you what a relief it is when someone tells me I don’t have to call them back. Even better when someone let’s me know I was on their mind.

5. Make plans for a proper get together.  “Let’s get together soon!” “Yes! That sounds great. Soon.” That conversation happens way too much. Let soon be now. If not soon, at least get it on the books. A girls night. A date night. A coffee with your neighbor. You’re tired. You’re busy. I know, I know. Connecting with others fills your bucket in ways that a nap never could though.

Make moments — tiny little moments to connect with all the other awesome humans in the world. You can change the world. I’m pretty sure it’s one of the mysteries we are here to unravel.

If you have a moment, check out this impactful, makes you think video on the importance of just looking up. It’s well worth the watch.

Your pal,

Chrissy

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

This post originally appeared on Life With Greyson + Parker.

Reach out. Like us on Facebook.

97
97
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.