How I Try to Respond When People Ask ‘What’s Wrong’ With My Daughter


I read this question online the other day:

As a parent to a special needs child, do you get offended when people ask “What’s wrong?” when they see a trach or something out of the norm with your child? How do you react to the question?

I admit, I still bristle at the tactlessness in the question, even though adults should know better. (I don’t mind tactlessness in children; in fact, I expect it and welcome the chance to educate a young mind. But I digress.) When confronted, though, I try to keep in mind something my father has told me: “We’re not born knowing these things.”

This was an oft-repeated phrase. Whether it was in regard to my embarrassment in asking him something I didn’t know or something I thought someone else should know, his response was the same: “We’re not born knowing these things.” This is a piece of my father’s wisdom I try to carry with me. When he told it to me, it never applied to anything that had to do with special needs — but it applies here all the same.

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People have made being offended an art form. Some people seem to look for ways to get offended just so they can rant, complain, even be compensated in one way or another for the injustices (real or imagined) done to them. To be fair, there’s probably much I could consider offensive. But I prefer to spend my energies elsewhere. I find I get a greater return if I focus on being positive and encouraging my daughter to be friendly in response to rudeness.

This is, of course, an ideal. It’s something I strive for, but I don’t always succeed in doing so. We are, after all, only human. Sometimes it’s difficult (oh so difficult) to strike a balance between the people we are and the people we want to be. Emotions get in the way; we’re not always the logical creatures we pretend to be.

But the point is, we’re always striving. We’re always working toward our betterment. Every experience can teach us, if we let it. And if we’re not willing to educate others, how will they learn?

This post originally appeared on eichefam.net.

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How to Win at Autism ‘Snakes and Ladders’


During a recent conversation with my mother-in-law, I lamented how our experiences with autism often feel like a constant go-round of “two steps forward, one step back.” What I mean by this is that one day my 5-year-old son will astound us with a new skill we were told would take ages to develop (riding a bike, for example), and then a “stim” (stimulatory behavior such as jumping, vocalizing, chewing on clothing, etc.) will pop up seemingly out of nowhere and significantly interfere with his learning. We’ll be smiling to ourselves that it’s been months with no seizure activity, and then, soon after, he’ll need to be hospitalized for pneumonia. Or perhaps we’ll get a call to find that we have finally been offered a spot in a particular therapy, but it will also entail additional appointments, costs, and/or juggling of medications and schedules.

When it comes to autism, it seems we live in a permanent state of breath-holding, other-shoe-dropping apprehension. The last few years have been a game of “Snakes and Ladders;” no sooner do we feel like we’re advancing in the social-cognitive-language developmental game, we feel as if we are hurtled back down the snake. This game, of course, is no game at all; it feels incredibly frustrating, and parents like us are anxiously aware we may never reach that last square on the board, where our child becomes an independent adult. 

Day 7 AAEM

The picture above describes many of these moments in the autism game of Snakes and Ladders. Parents finally get respite care to take a night off only to return to learn your child had a seizure or meltdown while you were out. Your child has an amazing aide at their school, and months later you may learn she’s heading off on maternity leave. Your kiddo gets invited to a playdate, and the mother of the other child mentions casually about (another) birthday party from which your child was excluded. You finally have your child’s therapy schedule sorted out, and, dammit, a new therapist calls in sick (again). The list goes on and on of often daily snakes and ladders. 

So how do we win? How do we push on in the face of all of these progressions and regressions? The back and forth. The truth is that we must change the way we think. We cannot look at autism as a linear developmental game of Snakes and Ladders but as hierarchical — as a pyramid. I now do my absolute best (and I fail on a lot of days), to imprint Maslow’s Hierarchy of Needs into my thinking. I want my child, within the parameters of this pyramid, to learn as much as he can, become as independent as he can, while achieving the highest level of self-actualization possible. 

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I, along with my family and team of therapists, will do what it takes to support my son, Quinn, in achieving his physiological and safety needs. We will nurture belongingness and acceptance in our family, schools and society. We will help Quinn cultivate strong self-esteem and feelings of accomplishment, and we will not allow him to measure accomplishment against socially constructed notions of success. Quinn and his circle of love and support will help him define his own accomplishments. We will celebrate every single one. 

If he regains language, great. If not, we will nurture alternative communication methods. We will greet every skill development challenge with this same loving adaptation and support. In doing so, we’re hopeful he will achieve the highest level of self-actualization possible; and everyone, no matter what their ability or challenges may be, can achieve these objectives. This is a game everyone can win. 

This post originally appeared on Project Bearings.

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My Daughters Are on Opposite Ends of the Down Syndrome Spectrum


Every single day I hear references to someone being on the spectrum. Being “on the spectrum” refers to a person having autism, but for a while now I’ve come to believe it might behoove the Down syndrome world to start talking in terms of a spectrum as well.

There are so many variations of how Down syndrome manifests itself in a person. Cognitive and physical abilities can be affected in differing degrees based on many factors. One significant factor is the many associated health conditions that individuals with Down syndrome have an increased risk of being born with or developing at some point in their lives. Some will have significant health concerns requiring surgery or other treatments, while others may only have minor issues common to Down syndrome.

Achieving certain life skills may come easier for some and yet may be unattainable to others just by the way their particular bodies reacted to the extra chromosome. All of the aforementioned factors can then be further compounded by additional diagnoses such as autism, sensory processing disorders and apraxia, just to name a few.

These extra diagnoses usually bring on additional and significant challenges which impact how the child or adult speaks, behaves, socializes and learns.

I’ve read many times how other parents who have a child with a dual diagnosis of Down syndrome and autism feel like they don’t fit in anymore at Down syndrome events or meetings. They believe there is too big of a difference between their child and other children who just have Down syndrome. They deal with things like bigger delays, complicated behaviors, lowered potential and intermittent or nonexistent stereotypical Down syndrome personality traits.

We recently attended the grand opening of a GiGi’s Playhouse near us and lasted all of about 15 minutes because the noise level and the crowd were so overwhelming to my daughter, Lily, who has both Down syndrome and autism. Call me paranoid, but I also sometimes sense a hint of fear from parents holding their cute, chromosomally enhanced babies when their gaze lands on Lily. Lily, who on this particular day is barely able to walk because she’s so busy trying to cover her ears, dodges bodies, averts her eyes and mutters nonsense while deeply cringing from the chaos of the grand opening party. Autism can be terrifying to people.

I’m on both sides of the coin. My other daughter, Dasha, just has Down syndrome, along with a few minor health issues that are common with Down syndrome. And then there’s Lily, with her numerous diagnoses stacked up to complicate all aspects of her life.

She has five: Down syndrome, congenital heart defect (repaired AV-canal), autism, a sensory processing disorder and Ehlers Danlos syndrome. I’m considering adding a sixth o, apraxia of speech, to the mix after seeing similarities between Lily and her brother who was just diagnosed.

I find myself struggling to fit into the Down syndrome world as the girls get older. Dasha seamlessly fits the mold, and I’m often saying she could be the poster child for someone with Down syndrome. But Lily doesn’t.

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Dasha
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Lily

It took our daughter Dasha coming home for me to see the differences between them. After adopting a child with Down syndrome who lived in an orphanage for the first 5 years of her life, one of our biggest concerns and fears was possible institutional effects. Institutional effects (abuse, neglect, little to no affection) on a child can often mirror autism traits. “Institutional autism” is what most people call it.

I remember reading books, blogs and emails about institutional autism symptoms before and after Dasha came home. Slowly, I came to the realization that Lily had many of them, yet Dasha, who was adopted, did not. After Dasha had been home a couple of years, I started embracing the idea of Down syndrome coexisting with autism in Lily. They’ve become intertwined, and I believe they help make her the unique person she is and was meant to be.

So you will now hear me say when discussing my daughters’ diagnoses that I have two girls and they are on completely opposites ends of the spectrum of Down syndrome. It’s OK that they are nothing alike, and it’s time to recognize the diversity in the Down syndrome population. We can’t just champion and promote the ones who are more verbal, more social, more successful or more like you than different.

Individuals with Down syndrome make up an amazingly colorful spectrum and they’re all equally beautiful inside and out.

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My girls giving their daddy some love.

A version of this post originally appeared on Our Version of Normal

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The Day I Told My Daughter Her Older Brother Has Autism


motherautism Ready or not, today was the day.

For almost seven years, I’ve pondered and prepared and waited for the subject to come up.

Autism.

She didn’t know it’s been a part of her life from the day she was born — even before that, since autism was the major consideration in planning whether or not we would conceive her. We’d reviewed statistics and debated. What if…?

Ultimately, we decided we could handle whatever life handed us. And here she is, asking The Questions.

The fact that it took her nearly seven years to ask about autism tells me that although this has been a natural part of her life, now she’s becoming more aware. Aware of the sign language and PECS symbols. Of the in home support staff. Of tagging along to the endless doctor visits. She’s understood since before she could crawl that she must never touch The Medicine. She now sees how our family is different from other families.

I must say, the build-up to this moment was significantly more grand in my mind’s eye than how the interaction, all two minutes of it, actually played out.

My daughter: Mom, why does my brother need you to help him so much? And why does he take medicine?

Me: His brain is different from other brains, and sometimes it doesn’t work exactly the way he needs it to work. The medicine helps with that. The way his brain works is called autism. He’s not the only one. Lots of people have autism.

Daughter: (without skipping a beat) It’s too bad we can’t go on The Magic School Bus and go inside his brain and make it work. Then he could talk. And he wouldn’t have to take medicine.

Me: Maybe sometimes he wants his brain to work like everyone else’s brain, but the autism also makes him special in a lot of ways. Like how he is really good at computers. And how he makes such amazing art.

Daughter: Yes. Maybe we could call The Justice League to have Batman go inside his head and give him a Brain Zap. He could zap it, and my brother could talk and not take medicine, but he wouldn’t zap the computer parts. Or the art parts.

Me: Hmmm… *debating a philosophical discussion with a 6-year-old*

Daughter: Can I have some chicken nuggets?

OK then.

That’s enough #‎AutismAwareness for one afternoon.

This post originally appeared on Mother Autism.

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6 Lessons I Learned From My Brother With Autism


1. Be grateful for everything that you are able to do.

My brother can do a lot of things, but he will never understand financial matters or the danger of walking into traffic or walking in a parking lot. He will never be able to brush his teeth on his own. He will never be able to speak. These are things that we all take for granted, but we shouldn’t.

2. Always thank people for what they do for you.

Every time after I cut his fingernails and toenails, he gives me a thank-you hug.

3. Take pleasure in the little things.

My brother’s face lights up when he puts the coins in the laundry, slides the slot in and       press starts.

4. Everyone has their own way of doing things.

My brother has his own way of doing things. When he washes dishes, he stands in a certain corner, even if you need to wash dishes, too. I used try to correct his way of doing things, but he resumes washing the dishes the way he wants to. That’s when I realized what he was trying to show me: there is no right way to do things; it is just your personal preference and how you choose to do them.

5. Don’t be afraid to show that you are sorry.

There are certain behaviors that my brother has no control over. After his meltdowns are over, he hugs my mother and me. I think that is his way to show us he is sorry.

6. No matter what life throws at you, you are stronger than you think.

For years, my brother has seizures. He would never want to remain lying on the floor afterward. He would always fight to get up. We would eventually concede and help him to do this, but it made me realize that my brother is one of the strongest people I know.

Luckily, with research, we have gotten his seizures under control, but I will never forget this lesson or all the other lessons that my brother has taught me so far and continues to teach me.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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.

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When I Was Diagnosed With Multiple Sclerosis, I Had to Make This Decision


My story begins like many others. I was young and invisible, with the world at my feet when life threw me a curveball in the form of a multiple sclerosis (MS) diagnoses. Suddenly I was faced with a life-changing decision. Would I deny the diagnosis, try to muddle through life and cope the best I could, or would I choose to thrive? 

I was recently asked to give a TEDx Talk about my MS story and about how my diagnosis changed my life. Everyone has their own challenge in life, and everyone will be forced to decide whether to deny, cope or thrive. If you listen closely to my talk you’ll see I actually did all three. First I stubbornly refused to seek help, and I was in complete denial that anything could be wrong. Then I desperately tried to hold onto my identity as MS threatened to tear away everything I’d worked for. Finally, I let go, and I let myself thrive. Anyone who lives with a chronic illness knows this is not a one-time process. Every setback and every challenge can make it feel like we’re back at square one, but I constantly remind myself to make the choice to thrive.

I hope you enjoy my talk, and I’d like to thank you in advance for taking the time to watch.

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