5 Compliments You Need to Stop Giving About Children with Down Syndrome

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People are awesome. Everywhere we go, my three year old daughter who has Down syndrome is a freaking ROCK STAR. People make a special point to come up to her and say ‘Hi’ and love on her a little bit. It’s really great.

Mostly.

Then there are times…well… that well-meaning, very nice people say things that just drive me crazy. I know that they are just trying to be nice. But whether it’s because I hear these things all of the time, or because they just aren’t the reality of the world I live in, there are a few compliments that make me batty…

1. “Children with Down syndrome are a gift from God.” This one is not untrue, and it doesn’t really bother me…I just hear it all of the time. A lot of the time, they tell me this while my other children are standing with me. I want to lean down to my boys and say, “Did you hear that, just kids without Down syndrome. Suckers.”

All kids are gifts from God. The other thing that gets me about this is that by saying this, I feel like children with Down syndrome are put on a pedestal. I shouldn’t be complaining about this, but that pedestal further separates her from her peers, and honestly, makes me feel like I can’t just say she’s being a bratty three year old from time to time. People act like I’m committing sacrilege when I talk about my daughter like any of my other kids when they were toddlers.

2. “She’s so happy and easy all of the time!” My daughter is pretty happy. You know what? She’s about as happy as ANY of my other non-chromosomally enhanced kids are. Stereotypes do exist for a reason, and generally, it is seen that people with Down syndrome are happier in nature. This does not mean that they are happy or are easy all of the time. Abby is 2, and does what other kids her age do: throws tantrums, gets into things, colors on EVERYTHING, breaks stuff and freaks out. She has her own personality and can get mad as hell at you if you give her cause. One of my friends said something about her own child with Down syndrome that made me laugh: “She has Down syndrome, not a freaking lobotomy!”

3. “She hardly looks like she has Down syndrome!” Uhm? Yeah she does. She has a mixture of mine and her father’s features, expressed with the presence of that extra chromosome. She has all of the “classic” features of Down syndrome: the almond shaped eyes, the low set ears, and the lack of bridge in her nose. Saying that she doesn’t look like she has Down syndrome actually stings a bit. It feels like you’re trying to say that she’s pretty in spite of her chromosomal makeup. I think she’s beautiful because of it.

There is a difference in saying she doesn’t look like she has Down syndrome and that you don’t notice her Down syndrome. I love it when people just see Abby. They just see my beautiful daughter

4. “Just think! It will be like having a little kid living with you forever! Your child will never grow up!” First off, this one just isn’t true. Adults with Down syndrome aren’t children trapped in bigger bodies. They have life experiences, they learn, they fall in love, they do just about everything other adults do. It doesn’t mean that she won’t need significant, ongoing care throughout her life. And, though being a parent is super rad…I’m not the kind of mom that gets all bent out of shape to think of her kids actually growing up. I want Abby to grow up. I want her to be independent. And she will be.

5. “I could never do what you do! You’re my hero!” GROAN. This is one of the biggest loads of crap I hear. I mean, I know people think that’s what I want to hear. It’s not. First off, how do you know you couldn’t do this? Had I been told that I’d be a mother of four kids, 2 with special needs, I would have said, “Yeah, no. Not me,” and run screaming from the room. You don’t know what you can handle until you get there, and until handling it is your only choice. Telling me that I’m your hero puts me on an impossible pedestal, too, that I can’t and won’t live up to. I’m a regular mom in an irregular situation. But these are my children, and I love and fight for them just as much as any other mom does.

Like I said, people are great. I’d rather have people tell me these things than the litany of shitty stuff people have said about her Down syndrome. I understand that people don’t know what to say and are just trying to be nice. And I love them for that. The worst thing you can say to a mother of a child with Down syndrome, by far though, is nothing at all.

Related posts:
I Never Knew I Wanted a Child with Down Syndrome
5 Compliments You Need to Stop Giving About Children with Down Syndrome
Learning How To Raise a Special Needs Child

What You Don’t Know About that Unruly Child

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You’ve seen him; in restaurants, he’s the loud one who rudely disrupts the other diners. On the first day of school, he’s the kid in your child’s class who you see spinning and wiggling and you think, please God let him not be sitting next to my child.

When you pass out your child’s birthday party invites, he’s the kid you’d just as soon not invite. At soccer practice, he’s the one on your child’s team who makes you think, why do his parents even bother bringing him? He’s obviously not interested. At the grocery store, he’s the brat who makes you think, his parents need to learn to control their kid. But there are some things you don’t know about that wild, unruly child…

You don’t know that from the time he was two, his parents received daily notes home from preschool saying things like:

“During story-time, your child ran around the room instead of sitting on the carpet.”

“Your child was disruptive during nap-time.”

“Your child did not finish any of his work today.”

You don’t know that when his worried mom first shared her concerns with her trusted friends and relatives, they said things like:

“That behavior is normal at his age.”

“All little boys are hyper!”

“It’s because he’s so smart – he’s just bored!”

You don’t know that at his preschool Christmas pageant, he was shoved all the way in the back where he would be less conspicuous, which meant his parents were unable to get any video of him. Not that he was doing anything worthy of recording as a family memory; instead of singing the songs that had been rehearsed ad nauseam, he jumped, squirmed, spun, and made weird faces.

You don’t know that at his pre-kindergarten graduation, when he said his memorized line at the microphone better than any other child in his class, his mother burst into tears, not out of pride, but out of relief.

You don’t know that in kindergarten, he was threatened with expulsion because of his picking habit… when he absentmindedly picked at the waistband of the little girl sitting in front of him during carpet time and she screamed out that he was trying to look at her underwear. And his mother had to explain to him about private parts even though he had no concept of the idea, no clue that he’d done anything inappropriate.

You don’t know that the parents of that undisciplined little hooligan didn’t even believe “ADHD” was a real thing. They smugly thought it was an excuse made up by weak parents of unruly children, parents who were too lazy or stupid to stay in control.

You don’t know that his mother has bought, read, and highlighted no less than ten books, and not just ones about ADHD; books about parenting ‘strong-willed’ children, books about discipline, books about love languages. (Maybe she just wasn’t giving him enough love and it was making him wild? Or maybe she could “cure” him with love?)

You don’t know that the parents of this child maintain a highly-structured, loving, nurturing, encouraging environment in their home. They have rewards charts and everything. Yes, they even have discipline!

You don’t know that sometimes, when his mother tells someone that they’ve chosen not to medicate, the person gets offended because they medicate their child, and it’s been a GODSEND for them. Does she think she’s better than them or something?

You don’t know that sometimes, when his mother tells someone that they’ve chosen not to medicate, the person says, “GOOD. Medicating your kid for ADHD is the same as giving them CRACK.” And then his mother makes a mental note to not tell that person if they every do choose to medicate, because quite frankly, she still hasn’t ruled out the idea.

You don’t know that his father is obsessed with soccer and desperately wants to be able to kick the ball around with his son, and that’s why he keeps putting his son in soccer every season even though the child would rather play with his shadow, lie down in the grass so as to inspect the blades more closely, or tangle himself in the net of the goal while the other kids chase after the ball. (Maybe one day it will “click.”)

You don’t know that he is conspicuously left out of birthday party invites even though he desperately wants to be included.

You don’t know that his mom can see when the ADHD has taken hold. That her son’s eyes glaze over and he seems to be “somewhere else.” That she has slapped him before, just to get him to look at her, and she hates herself for it.

You don’t know that his mother has to remind herself again and again that ADHD really is a disorder, an imbalance of hormones in the brain that causes a person to be unable to distinguish which things in his environment are important and which things should be ignored. To this child, a blade of grass is every bit as deserving of attention as the soccer ball that’s coming at his head.

You don’t know that his parents struggle daily with walking the fine line of being sympathetic that their child has a verifiable disorder, but at the same time knowing they must require adherence to rules and expectations, and teach him how to fit into a society that has zero patience for people like him.

You don’t know that even though his mother tries her best to spin ADHD in a positive light, that this child understands he is different, and has sobbed and screamed “I hate ADHD! I pray to God to take away my ADHD and he doesn’t!”

So next time you see a kid running wild, trailed by a haggard-looking mom with a frizzy pony-tail and puffy eyes, just remember: There might be a lot you don’t know.

Looking for a Land of Empathy and Wonder

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I’d like to live in a land where my son Tucker is one of many, and the many each have a variety of differences. A land in which none of those differences are considered afflictions, special needs, disabilities, or developmental delays. In this land, people’s quirks and differences wouldn’t be noticed.  They wouldn’t be important. Everybody’s uniqueness would be celebrated.

The only thing important in my imagined land is a person’s heart.  His empathy.  His ability to find wonder.  To experience joy while blowing bubbles on a breezy spring day, rather than worrying about a deadline, a job, an overdue bill, or a disease.

A place where every resident is able to abandon her phone and follow her son on his quest to best imitate the flight pattern of an erratic butterfly.  To experience wonder.  Joy.

I’d like to live in a land where skin color is as notable as the color of a person’s socks.  A place where couples who fall in love are automatically a family, regardless of the opinion their neighbors, or their governments hold.

Where a person’s actions towards others is noticed. Appreciated. A place where the cost of her handbag, or her shoes, is not.

I’d like to live in a world where I can take my son to the playground and the fact that he’s playing amazingly well with an unknown younger friend is what’s noticed rather than the fact that his new, younger friend is miles above him in language.  In knowing how to play.  In, well, everything.

I’d like for all of us to simply bask over the joy seen on two boy’s faces bonding over finding an abandoned ball.

I’d like for all of us to simply be.

Can you imagine?

I can.

I see that joy and wonder on my little boy’s face every single day.  He sees magic.

He makes me want to get back to seeing the magic.

Because this land of mine would also allow me to see my son’s recent school photo and not analyze it.  It would hold me in the warm arms of the belly-laugh moment my husband and I shared when we first saw it, and thought, “Oh my…he looks so mischievous!  So grown up! So beautiful.”

Instead, I studied that photo late at night, alone, and wondered whether his school photo looks like autism.  Whether my little boy’s beautiful eyes all squinted up as if he’s hiding something meant, instead, that he was at an “I need a break” point.  That he may have been intimidated or overwhelmed and didn’t have the words to say so. That he may have been frightened.

I’d like to live in a land where empathy and wonder rule.

Where our differences don’t.

You know what the best part is?  This land exists.

It exists right now. It exists in you.  We, my friends, have the power to transform our worlds, our wanna-be lands, and our homes into places filled with empathy and wonder.

It starts with you.  With me.  With our children.  It starts with how we choose to spend the next five minutes. The next hour. The next year. The next rest-of-our-lifetimes.

It starts tomorrow, when we’re stressed, overwhelmed, busy, and annoyed.  Take a moment and don’t look away.  Attempt eye contact with the boy who makes you uncomfortable.  Say hi.  Give his tired mom a smile.

Give her a smile that conveys the message that we’re all in this together.

Your smile may just be the one thing, today, that lets her know that there truly is empathy and wonder.

And it’s Everywhere.

Something’s Not Right with Our Boy

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I just took my six year old son to the doctor. He’s a beautiful boy, all lengthening arms and getting-ganglier legs.

He is the picture of health.

I sat there in the doctor’s office and cried while the doctor told me I was right in bringing him in and sharing our concerns. “Lots of parents are in denial about kids’ odd behavior. They figure they’ll just outgrow it, but that rarely happens in these kinds of situations.”

“But why do we suddenly have all of these new diagnoses? I mean, it seems like everyone has a diagnosis. What did kids 50 years ago with these problems do?”

“I’ll tell you what they did 50 years ago. They learned to self-medicate. They found things that worked, and by adulthood, that odd janitor who didn’t really have any friends would go home and drink a 12-pack a night. We’re better able to diagnose now than we used to be.”

I started crying again, and Asher came back in the room and looked at me, curious about the tears, and I told him I loved him. Oh, how I love him. My heart aches with my love for him.

Asher has always screamed bloody murder when it’s bath time, or when he’s going to get a hair cut. BLOODY. MURDER. Drooling all over the place; there’s no consoling him. Something inside him shuts down and I can’t reach him.

I hate those times when I can’t reach him, and they’re becoming more often and it terrifies me.

He rarely, if ever, speaks when he’s in large groups of people. He absolutely falls apart if there is a change in our schedule. Absolutely and completely falls apart.

When two people are talking over each other, he’ll put his hands over his ears and scream, “It’s too loud!!” and then a tantrum ensues. I can’t get him out of it.

Sometimes I’ll come into the room and start to talk to him, and when he doesn’t respond I just chalk it up to his not wanting to listen to me because I’m his mom.

His teacher, in February: “Something is very different about him, and the earlier we get it checked out, the better.”

My husband describes him as always “on edge” even though, on the outside at least, he looks perfectly content and relaxed.

A mother in denial and a calm-looking, beautiful child: the perfect recipe for having severe anxiety/sensory processing issues overlooked.

I guess I’ve always known something was maybe amiss but honestly:

I didn’t want to know.

There. I said it.

I didn’t want to know.

I mean, it’s totally normal to drive by the school playground and see one little figure in an orange jacket wandering around playing with nobody, right?

Totally normal.

My little boy has a huge heart. Huge. He is adventurous and he sees the beauty in everything. He never wants to be far from his Mama and he can create a cube out of a piece of scratch paper in one minute flat. He can organize his entire room (including the furniture) in his head, and wouldn’t you know that once he’s done actually directing me to move said furniture, his plans worked out.

I ache for my boy, I ache ache ache for him, because I know how isolating growing up with anxiety and OCD is. I would take that from him in a heartbeat if I could, or if I knew how. I don’t know how. I can’t. I am afraid of tests and play therapies and diagnoses.

I’m more afraid of his getting to a place where we can’t reach him at all.

Maybe I am a horrible mother who needs to be put out to pasture with the rest of the crappy mothers, eating vegetation and getting fat on my own parenting mishaps for the rest of my life. I’d be contributing to the greenhouse gas problem but not really caring, because not really caring was the reason I was put out to pasture in the first place.

Or maybe I’m just a mom, doing the best I can.

Maybe “the best I can” means staring into the spotlight, all boneless and afraid of hearing answers I don’t want to hear.

Maybe “the best I can” means, even though I’m afraid, dialing that number scratched out on a post-it note.

Maybe “the best I can” means clearing the tears out of my throat when the other end of the line picks up, stating my name and doing what is right by our boy.

Celebrating Birthdays When Your Child is Autistic

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His birthday is a reminder of where we should be and where we aren’t. 

Of the milestones we missed by years and the ones that never came, and may never come.

Of the labels that have come to define him much more than his name or his soft snowy skin or his large, toothy grin.

There are presents, but he will not open them.

There is cake, but he will not eat it.

There is singing, but he will cover his ears.

There is a child who grows into a man, before my eyes. (How will I care for a man? Who will shave his chin and make him sandwiches?  )

There is the pressure – of the things I have not done that could make him better, of what happens when I am gone – weighing on my chest when I open my mouth to blow out the candles he cannot extinguish.

I blow and blow and only then does he flash that toothy grin; I am silly, my hair a mess. This is his present.

I make him smile and that makes me smile; this is the only gift that is given today. This little sliver of his happiness.

But then, after.

There is me, in the dark, the smoke from 10 birthday candles drifting past his eyes, my eyes.

Into the air of a night he will not know to be any different than the one before it.

The Golden-Haired Girl and The Princess Tower

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I have always been the nice mom in the neighborhood, comforting the upset kid waiting alone at school pickup, worrying about the preschooler cruising the grocery store aisle, until yesterday, when I told the golden haired little girl at the park to go away.

It was a warm beautiful day, and I was intent on making some memories. Planning a picnic lunch, I started packing remember to fill the backpack with balls, bubbles, sand toys and a Frisbee. My older daughter Olivia brought her scooter, and we went to the local park where I knew my younger daughter Zoe could navigate her pink power wheelchair through the grass and over the sidewalk paths. I planned on hanging out and playing with both girls, while helping Zoe walk, climb, slide and swing. All challenging stuff for a kid who cannot stand by herself, but what fun, playing in the park like everyone else.

We soon arrived and found a shady spot to spread out our blanket. Zoe parked her wheelchair and we sat enjoying lunch and playing a silly game. Olivia was soon off, riding her scooter in laps around the grassy area where Zoe and I sat playing with bubbles. After a while we packed up and moved to the other side of the park, to the swings, slides and climbing equipment.

Olivia led the way, dropping her scooter to the side of the swing set. Zoe and I arrived a few minutes later, parking her power chair alongside O’s scooter. Taking Zoe’s arms, I walked her up to the empty swing alongside her sister. With my hands over hers, she sat swinging, I gently pushed her a few feet into the air while she laughed and called out to Olivia. Within a few minutes, a golden haired little girl arrived. She was dressed in a neon pink and green sundress, was barefooted and hopping up and down. She looked to be about 5 or 6. Zoe immediately sized her up as a potential playmate- and said hello. The golden haired little girl ignored Zoe, looking at me instead, pointing to Zoe’s chair and asking “Why does she have that?”

“It helps her move around fast,” I said.

Zoe and I moved to the climbing gym. Taking the steps slowly as we climbed, one hand over hers, my other hand on her hip, my body blocking hers from behind for extra balance. One slow step after another and Zoe was finally at the top of the smaller tower. Excitedly, Zoe called out to her sister-trying to entice her into a game of hide and go seek. The golden haired little girl appeared again, quietly at my side. It was her loud voice that woke me from my thoughts. “Why do you have to help her walk?” “Why do you have to hold her hands?” She fired off her questions without a breath in between. “Oh, it helps her balance and go faster” I answered.

For the next half hour Zoe and I went down slides, climbed to the top again, hung out in the small tower, played giggle “tag” with Olivia – and for the next half hour I tried to distract the golden haired little girl every time she appeared again, questioning. “But, why do you slide with her?” Followed up with “I am 5 and I can do it by myself. She is older than me. Why can’t she?!” Smiling, I gave this little girl all of my best politically correct, curiosity satisfying, kid answers about why my daughter cannot walk, cannot stand or run all by herself. I was determined not to talk about disease, weak muscles or a body not born to do these things, because Zoe was right there, listening, playing and smiling. I smiled my best fake, patient, Mommy smile . On this one, sunny, warm afternoon I wanted us all to be normal and well.

Golden hair little girls’ mom was not around, I kept looking. Finally I saw a babysitter off in the distance, texting, glancing up to find the girl and then look down to her phone again. I snickered to myself, of course, I thought. That golden haired girls’ mom probably needs a rest from this kids incessant nagging curiosity. Sizing up the babysitter, I could see she was too young and inexperienced to help me out, I was definitely on my own. Great, I thought. Golden hair little girls’ stalking session had probably given the babysitter a break, too!

Zoe and I were climbing the steps to the small tower, yet again, when the girl was beside me. Zoe and I were awkwardly lunging forward, one unbalanced step at a time, toward the top. Golden haired girl was getting more curious, “It sure takes her a long time to get up there.” And because golden haired little girl still had not even said hello to Zoe, I quickly glanced over my shoulder to make sure I was out of earshot and then growled at this angel faced, golden hair little girl… “Go. Play.”

“Huh?” she exclaimed, surprised, her eyes widened.

“Go. Play. Somewhere. Else.” In my best low and stern, mean mother voice I over emphasized each word. Like a snake about to strike, I slowly hissed for extra effect. And, finally..poof! …she was gone.

At dinner, we were talking about our time at the park. “That little girl…” Zoe began slowly… “I saw her following you,” interrupted Olivia.

“She was annoying me” Zoe finished saying, laughing. I looked at Zoe then, the exaggerated expression on her face, as she rolled her eyes in frustration.

I remembered then, the way golden haired girl dashed across the park, reappearing repeatedly, with such fluid motion, her muscles strong, her legs pumping fast as she ran like lightening. I saw her climbing, again to the highest tower where Zoe wanted to go, yet I could not take her because the only way to reach the high tower was by using the monkey bars. I pictured her golden hair, long and curly down her back, bouncing as she took the rungs of those monkey bars effortlessly, it took just seconds for the golden haired girl to make it to the top of the highest tower, where she stood, princess like, looking down at the rest of us.

With an ache in my mothers heart I said, “Me too, Zoe. She was annoying me too.”

Learning How To Raise a Special Needs Child

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I learned how to run last year.

I lined up with 30 or so other people and listened to experts talk about running (only since I am deaf, I couldn’t hear them so I looked at shoes). Then I practiced. I ran around the track. I ran down paths. I ran down sidewalks, walkways, the beach and I kept on running.

It was excruciating in the beginning. Besides being in the first trimester of pregnancy, I was out of shape, overweight and my lungs had the full pleasure of having known at least a pack of cigarettes every day for twenty years!

It was really frickin’ hard and I’m not going to pretend it wasn’t.

I think having a child with a disability is similar to learning how to run.

We line up and listen to a whole lot of people tell us what we should do. Sometimes we hear them. Often we don’t. They are usually talking from their own experience anyway and only slivers of what they say will have real applicable value to ourselves.

Then we run: we try and try and try and try.

We advocate for our kid, we learn all this new disability language, we talk, blog, preach, bitch, cry and yell. We cry again, especially when the old lady at Safeway calls our little peach ’a mongoloid retard’.

We poke around in our own heads, every uncool, non-pc thing we ever did comes back to haunt us (did I really say I’m having a “special” day…? Did I laugh at the retard jokes on South Park? Did I think it hilarious when someone asked if Downieville California was the Down syndrome capital of the US ?).

We just want to cry and stop because this is NO FUN, dammit, and we don’t want to be the pc police and we don’t want to feel like calling  the audiologist on her shit because she was calling our precious peach “a Down’s kid” in a snide tone.

But no. Feel like it or not, we keep on at it, keep trying and trying and trying and we do it only because we love our kid, love all of our kids and if we don’t do this, who the hell is going to?

Then it gets easier.

We are stronger. We understand more. We have mastered the acronyms and have our friends in the field. We are not alone and we know it.

We can breathe while we race. We can pace ourselves.

We go to meetings and see new parents, new runners and we are overcome with feelings of gratitude that we are not there anymore, we know how to run now! But waves of memory may very wash over us, just remembering how it felt to feel the burn in our lungs while we struggled to pump our legs forward just one more freaking block.

The memory turns into reality as we come up against something new, untried, and we fall splat! on our face in a cesspool of prejudice and discrimination. The lady at the IEP meeting thinks my precious peach is stupid, rolls her eyes at me. I get to hear one more therapist tell me my kid is “doing great; Down’s kids are always delayed so don’t worry” because that’s what I want for my precious peach, for her to be judged, tested, assessed and held to some litmus of normalcy, right?

Oh fuck that. Fuck you and this can be so fucking hard.

We hit the ‘brick wall’ of running, want to come to a dead stop.

We can’t go any more. It’s too much. We’re sick of this shit.

But then, well, a deep breath comes up from within us. We get some sleep, wake up and take a swig of our coffee, wipe our mouth with the back of our hand, narrow our eyes, move forward and  somehow just by doing that, it gets easier again.

It really does.

Our breathing gets easier and easier and we find we can help others run too. We can encourage them. Love them. Tell them they are not alone. Remember that for them it’s hard and new and the words are still unfamiliar, the acronyms unknown and the raw feeling of being birthed into a community that was not their choice, fresh.

Then the day comes when someone says we are a poster child for acceptance, and we laugh.

We laugh long and hard, so hard and so long the tears slip out the corners of our eyes in silent tribute to the hours spent in self-purgatory over every uncool, hurtful thing we have ever uttered, thought about, laughed over.

None of us – not one -  is a poster child for acceptance and yet we all are.

Because we are all trying.

We care.

We love.

It’s not a race; it’s a relay. Of one generation of parents to the next.

We are in this together, learning as we go.

Because we love our kids.

I Never Knew I Wanted a Child with Down syndrome

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What feels like a million years ago, I was on the Baby Center Down syndrome Board. I was immersing myself in the questions, the comments, the endless threads. The talk, the chatter, the crying, the heartache. The “brag”s. One signature struck me in particular, “I never knew I wanted a child with Down syndrome until I got one.” I still don’t know who originally came up with that – do you? – but I clearly remember the pang in me that I felt when I first read it.

I never knew I wanted a child with Down syndrome until I got one.

At the time, I wondered over it. Wondered at the love behind it, wondered if I would ever feel the same. Wondered if I would lay claim to those words – not for stringing them first, but rather, lay claim to their meaning. Lay claim not just to my daughter, but to her extra chromosome. Because cognitive disability was hard for me. Very, very hard.

Hard to accept, hard to appreciate, hard to wrap my mind around its presence in my life through my child.

Moxie is three years old now and I can say it with all of my heart, ever fiber that makes me who I am: I never knew I wanted a child with Down syndrome until I got one. Oh! How we love her.

It’s partly just who she is but it’s also partly the something that the little extra carries with it. Because some of the things that she does and some of the things that we love adore so completely about her are things that we hear from others who are also connected to this tribe.

Like: she can see into my soul. She doesn’t normally cover me in hugs or kisses; she’s usually pretty hands off. But there are moments when I am crippled with sadness – and out of everyone around, with everyone around – she senses it. She comes over, cups my face in her tiny hands, kisses my cheek with matchless tenderness. My child, my heart.

I was terribly cynical for a long time.

Pregnant with Moxie, I’d read things about how much mothers loved their little ones with Down syndrome and I thought things along the lines of, “that’s great, that’s wonderful, silver linings and all, good for them but I’d rather have a kid without Down syndrome, thanks”. I think in my heart of hearts, I didn’t believe it was possible for someone to truly be accepting of an intellectual disability, or to honestly see something anything desirable about it.

And even now, typing these words, I think of the person I was, I think of old friends of mine and wonder if they are reading this, how they are likely to be thinking I’ve either changed a lot or I’m pulling this out of my ass.

I’ll make it easy for you, my friend, by telling you straight up: I’ve changed.

People might say, ‘oh yeah, you can accept and love Moxie and all because it’s easy with her, she’s “high functioning” or whatever.

Besides the fact that I hate words like “high functioning” or “low functioning” and I hate how we seem to assign merit to people based on how alike mainstream they are, guess what? Moxie isn’t really “high functioning.” I don’t  know what’s what in all the “functioning” stuff but I do know this: she’s over three years old and maaaayyyyyyyyybe says 5 words. Sure, she understands just about everything we say to her, but she doesn’t talk much.

She’s not some “high functioning” child with Down syndrome. She’s just a little girl. Who has Down syndrome. That extra chromosome contributes to who she is – undeniably so. As I get to know her and by extension, it, I grow to love the whole package so deeply, so completely and…words escape me.

I never knew I wanted a child with Down syndrome until I got one.

I got her.

10 Easy Ways to Show You Are Cool With Special Needs and Disability

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All righty, okay, you want to show you are cool with disability/special needs, but you are not sure how to do it. Should you forward the meme on Facebook of that kid with Down syndrome to your friend who has a kid with Down syndrome? Or how about that article about a cure for Autism?! What to do?

Well, these are some things that would work for me – I am disabled and my daughter is too – but bear in mind that I’m not all disabled people! I’m just one. And since my disabilities are far less discriminated against than my daughter’s Down syndrome is, I’m writing this more from her perspective than my own…

1. Talk! Talk to us. Talk to me, talk to my child. Especially to my child. Even though she doesn’t talk much in return, she’s soaking in what you are saying. Ask questions about things kids tend to like (my child loves shoes, babies, Dora the Explorer and cheerios, for example)

2. Make eye contact. This seems so basic it feels dumb to write it. But you know what? A lot of people don’t make eye contact when they talk to people with disabilities. Maybe they are feeling uncomfortable, don’t know where to look, something else? Whatever; don’t be one of them! Just look at us in the eyes, connect visually (if you are not blind, that is), maintain eye contact.

3. Invite! Like, sincerely. Invite my child to parties or events or things that you are throwing or wanting to attend. Desire her presence, or want to get to know her. Even if you don’t think she can make it, it feels good to know that you are wanted. Right? Not many people like sitting alone at the cafeteria table.

4. Show interest. Be as interested in my child or any child with a disability, as you would any other child of her age/cuteness level. Does that make sense? Some people just aren’t kid people; that’s fine – so don’t pretend to be a kid person. But if you are a kid person, be just as interested in the kids with disabilities as you are normally with any other kid of that age.

Interest in gadgetry counts. Kids who use wheelchairs? They are KIDS who USE wheelchairs; they are not wheelchairs! They are not “bound”! They are tool-using kids! Same goes for kids who use hearing aids or other tools – and if you are really interested in their tools, ask about it, for crying out loud. “Hey, what model is that? What’s your battery power?” – the point being, just as you would with anyone else, be sincere in your interest, and honest in your questions and it’s cool.

It’s very, very cool.

5. Think of us in the picture. That’s to say: care about inclusion and access. My child, me or children who have needs different than what is typical.

This is big: it kind of makes me feel like crying when you’ve thought about access or inclusion: you jumped ahead and thought about the fact that my child might have sensory issues and so when you are suggesting a place to eat together, you say, “hey, how about that place outside by the grass? It’s quiet there.”

Or something  like that.

When it’s clear to me that you’ve thought about our needs without my having to bring it up, it means the world to me.

6. The Stories About the Homecoming Kings and Queens? The posts about the homecoming Kings and Queens with Down syndrome, the video of the child with Down syndrome and the dog? The kid included on the basketball court and all those other “inspirational” stories… um. Yeah. They don’t float my boat. More often than not, those are screaming examples of Inspiration Porn for me and I can do without a daily dose of it.

It might be helpful to think about it in racial terms to see where I am coming from. Would you be passing around a meme of an Asian guy on a basketball court, saying something like, “The Only Disability in Life is a Bad Attitude”, or what about a photo of an African American girl, crowned Homecoming Queen with taglines of “Try Before You Fail!”

Right?! Okay. So before you forward that stuff, just do the easy beginner’s litmus test – the quick mental swap – disability with race – to see whether or not something is going to be rubbing people wrong.

7. Stand Up. You know those memes that go around that sometimes seem funny? Or the jokes/tumblr’s that are about something or other but have a mocking smell to them? Besides not “liking” them on social media, it means so much when you call them on their shit.

Comment:

  • “hey, this is a little uncool” (*or: repugnant, gross, execrable, mean or my personal new favorite, “pestiferous”)
  • “we’re ahead of this;  mean isn’t funny anymore (was it ever?)”
  • “offensive isn’t laughable”
  • your own utterly witty call-out

I get tired of being the only one commenting, I feel alone and lonely when I see things like “retardsy” or “f*cktard”, when I’m slammed as being “too sensitive”, “too PC” for asking people to cut it out.

Your joining me means a lot to me. It really shows me that you care, that you are cool with my child’s disability, with me. That you will stand up for her, me and the two thirds of the planet that are said to either have a disability or a connection with disability.

8. Reach Out. Do you have friends with disabilities? Real and true friends? If not, consider going the extra mile to make friends with people with disabilities. People with disabilities are the same as any other cultural tribe – there are going to be people that you’ll love and get along with really well and there will be assholes. So you just need to reach out, be friendly, be yourself and go from there.

9. Hire Someone With a Disability. This totally seems like a huge jump, doesn’t it?! I mean, I’m going from forwarding a meme to HIRING someone! But it’s really, honestly not a big leap. Don’t think that because you are a stay at home mom or don’t have much money or whatever that you can’t: YOU CAN!! Experience counts as pay in many intern/experience-oriented positions. There are a LOT of programs out there to help connect you with people with disabilities who want to work and need some experience and maybe some training. A lot of these programs even PAY YOU to “hire disabled”. Nothing says you are cool with disability and value people with disabilities as choosing to take someone with a disability under your wing as an intern/apprentice/employee.

10. Ask Questions. I appreciate nothing more than honestly-asked questions. Now, this just me, one disabled person and I run strongly along the lines of Deaf-culture in this regard (- I am extremely frank, to the point of appearing tactless). But I’ve always appreciated people asking what they are curious about. How else is anyone going to learn, after all?

Ask your friends with disabilities questions. Ask people questions. Do you want to know why Autistics flap their hands? Ask an Autistic. Want to know what brain injury is about? Ask me. Want to know what it feels like to have fibromyalgia? Ask someone with fibromyalgia.

Ask questions. Extra points for good, hard, well-thought out ones, but all questions asked in the spirit of trying to better understand another are welcome. With me anyway. But I’m just one person with a disability parenting a child with a disability, remember. We’re not all the same.

6 Perks to Having an Autistic Child

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Autistic Child

Being the mother of two children with autism does have its perks.

Don’t get me wrong, My boys certainly bring out the “extreme” in parenting.  However, when I talk with my friends who are raising neuro-typical children and I listen to their many frustrations in raising them I have noticed a number of difficulties we do not share.  In fact, I have a much easier time of parenting the Trouble Brothers because they don’t engage in many of the “normal” behaviors of their NT peers.

1. No Whining. My boys do not whine.  Ever. They may scream loudly like wild banshees at times when their developmental limitations prevent them from using words to express their dissatisfaction with something but they never resort to that incessant nails-on-the-chalkboard whine that lasts hours and leaves a mother white knuckling it through the day.

2. Lack of Sibling rivalry. Growing up with two sisters I remember the antics we used to pull that left our mom wanting to sell us to the gypsies.  Every trip in the car, grocery store visit, and family photography was laden with the whines of, “MOOOOMMMMM, Caryn poked me!”, “MOOOOMMMM, Sunday touched my new Barbie and gave it cooties”, “MOOOOOMMMMM, Molly picked her nose and touched my pillow!”  Truly, I don’t know how any of us lived past the age of 10.

Thankfully, I have never had to experience this with my own children.  My boys tend to steer clear of one another and will gladly enjoy their own books, videos, or toys independently from one another.

3. No Fashion Awareness.“But MOMMMMM, everyone has more Silly Bandz than me!”, “I can’t wear THAT!  All the kids will make fun of me if I don’t have such and such jeans!”, “I am NOT wearing anything that comes from Walmart Mom!” Thankfully my boys will never utter these words.  Individuals with autism do not recognize the social desire to fit in and follow the crowd.  They are their own crowd and they like it that way.

4. Lack of Greed & Competition. Thankfully my boys don’t spend Christmas morning counting who has more presents than the other.  If money is a little tight and they only have one present on their birthday they are overjoyed with what they do have instead of being mad that there wasn’t more.  In fact, I can visit the local children’s consignment shop and buy a gently used toy for a quarter of the price of a new one and they could care less.   They are happy to have anything that is new…even if its only new to them.

5. Not hearing “WHY???” Endlessly. If there is one thing I am most thankful for in having children with autism it is that I never have to listen to the barrage of whiny ad-nauseam “WHY?” questions. In general, individuals with autism do not tolerate not knowing what is coming next.  This is why the question “Why?” makes them uncomfortable.  The autistic mind prefers knowing the answer to a question before asking it.  At the very least, they prefer a simple “yes” or “no” answer over the unknown that can follow the question, “Why?”

6. Routine. My kids have a very set routine to their day to day life.  Their diets are boring and quite limited but those limitations also make meal times a snap.  I know that as long as I have bread, cheese, and chocolate chip cookies in the house the boys are set for life.  Noah has a definite addiction to Pepperidge Farm Goldfish Crackers but other than that my kids are easy-peasy eaters.  I don’t have to listen to my kids whine and complain that they are having peanut butter and jelly AGAIN or that they want to try those expensive yogurt snacks all their friends have in their lunch.

Similarly, the boys love watching the same DVDs and episodes of Dora the Explorer or Yo Gabba Gabba over and over again.  And while I do sometimes complain about watching Finding Nemo for the 1,342,893rd time I am happy knowing the same movie makes them laugh in all the same spots each time.  Its simple and yet, beautiful.

I’ve never been a Pollyanna optimist but I am neither a cold-hearted pessimist.  Instead I find myself being more of a realist and reality dictates that when you raise children with autism, whether it is high-functioning Aspergers or a diagnosis of profound autism, its imperative that you find the joy in the small things. Like the above.

Her Place

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He announced his order to the cashier.

Pushing up glasses heavy on his face, rocking from side to side a bit, his voice boomed above the muffled conversation of others in line.

My heart beat a little faster as I watched the exchange.

Would the cashier be polite?

Were the other customers beginning to stare?

Could he count out his money? Wait for change? Balance his drink and popcorn without spilling one or both?

I beamed with pride as he navigated the intricacies of his task.

But most of all? I thought of his mother.

Was she sitting next to an empty seat waiting for his return?

Was she at home, holding her breath until he walked in the door?

I wanted to find her, tell her what I saw.

Tell her he did it. They did it.

Her son used skills he was so carefully taught and society held his hand.

The cashier counted out his dollar bills and onlookers shifted to make room for his tilting tray. Someone picked up his change as it escaped his grasp, he muttered a thank you and continued on his way.

A million obstacles were conquered with his every step and no one noticed but me.

I think about this young man often.

My daughter has autism as well and, little by little, I am learning that I have to let her navigate this world on her own. I want her to be strong and independent and able to juggle change and popcorn and an overflowing pop.

I want her to be able to do whatever she wants to do in life, even though sometimes I still have to tie her shoes.

The only way she can succeed is if I let her try, give her to the world in small doses and hope that there is a place in line for her too.

Hating Summer as a Special Needs Mom

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It’s late June, and most children are on summer break now.   Time to celebrate, right?

Wrong.

As a Special Needs Parent, the first days of summer fill me with a mixture of terror, guilt and anxiety.

For the record, I used to love summer — no schedule, vacation, spontaneous outings, beach days, ice cream, long days and even longer play dates.

Now, I find myself wishing away the entire season.

Special Needs Parenting is challenging 365 days of the year. Unlike the shorter winter break or spring vacation, summer is unique because it is long and most special needs children now expect the routine, support, predictability and familiarity of the school year. Frequently, school-age special needs children struggle with the concept of time and that contributes to the confusion and anxiety many children experience during these three months.

In a word, summer is anything but easy living for us.

And so, here are the reasons I hate the lazy, hazy, crazy days of summer:

1. Transition — Summer marks the biggest transition for my son and therefore, my family. School is predictable and his expert team deftly supports our son M so that he can be his very best.

2. Structure-less — Compared to school days, summer days have almost no structure. Of course, we have a schedule and we mimic what works during the school year, but it isn’t the same thing and no matter how hard I try I’m not Mr. J or Miss K.

3. No Schedules — During the school year, M has a very specific daily schedule. His day starts early (6:00 am) and ends late (6:00 pm). Filling 12 hours isn’t easy when you work fulltime and don’t have a degree in special education.

4. New Everything — Camps, summer school, tutors and lessons all mean new teachers, staff and childcare for our kids. Not to mention new and unfamiliar experiences and venues. For parents it means giving crash courses to all these folks in order to make them experts in our son M.

5. Social Skills — The built-in opportunity to mix and mingle with different children five days per week disappears. In addition, regular schedules for karate and other lessons turn to summer schedules and these offerings can be too much or too little.

6. Regression — The sun has just rose on Day 1 of Summer and already the sneaky, silent tentacles of regression are pulling at M. He wants TV all the time, he’s throwing tantrums again, he is having meltdowns and it’s only 7:00 am.

7. Lack of Resources — Summer means the daily support M needs disappears and the pressure to channel the expertise of professions (including his teacher, his O.T., his P.T., his social skills coach) fall to the parents.

8. Guilt – Whether you are a working parent or stay – at- home parent, the guilt about keeping your child happy and progressing can be crippling in the summer.

9. Unpredictability — From fireworks to thunderstorms to oppressive heat and humidity, almost everything about summer can be unpredictable and often frightening for special needs children (especially young kids).

10. Sensory Overload — Sand, sunscreen, traveling, melting ice cream, condensation on water bottles, crowds, screaming babies, sunburn — need I say more?

11. Sleep Changes — It’s tough to stick to the same early to bed and early to rise sleep schedule during the summer. This is impactful for typical children but for sensory children and special needs children, it means the day starts with a deficit that will impact everything.

12. Spontaneity — The secret summer lover in me loves the spontaneous and unpredictability of summer. I love nothing more than grabbing a pizza for dinner on the beach or going to a last-minute BBQ. But the special needs parent knows that change isn’t a word or concept easily embraced by our children.

13. Sibling Battles — We have twins but whether it is a twin or a brother or sister, siblings have to compromise and adjust to one another during the summer often on a daily basis. In a special needs family, the battles are that much worse and balancing the needs of the typical children is as important as meeting the needs of the special needs child. It is a lot of pressure and there isn’t a manual to guide use.

14. Stares, Pointing, and Worse — You’ve seen me and my family and my son on your vacation or in town. We are the ones with our 9-year-old on the beach or at the ice cream shop. He might be throwing a tantrum because his cone is melting or because he thought we were leaving the beach at an exact time and we are late. Please don’t judge us! We don’t mean to wreck your summer — we are counting down the days until school reopens…

Of course, many parents of typical children also look at summer with some trepidation. But usually a few ice cones with rainbow sprinkles, movie nights, extended curfews and trips to the beach and they are humming “Summertime.”

As for us, at least we can eat ice cream for breakfast, watermelon for dinner and dance to our own summer theme song.