In hindsight, I believe I knew that my son had autism just after birth while I was holding him at the hospital. Motherly instincts really do kick in that early.

I became vocal about my concerns to our doctor by his first birthday and by his 15-month checkup, I was asking our wonderfully optimistic pediatrician if he was going to refer me to a developmental pediatrician or if I had to find one myself.

I knew when he wasn’t smiling by the time he was a couple months old. I knew when he wouldn’t respond to his name or loud noises played in his ears but would run clear across my house when the Barney theme song would come on. I knew when he wouldn’t make eye contact with us.

I simply knew.

By the time he was 18 months old, we had seen the top professionals in town and we had been given our diagnosis. The moment after I heard the words “I’m not going to hedge a guess here, I’m sure he has autism,” I cried. I gave him such a great name specifically for business cards and now I wasn’t sure if he would ever get a job.

That was the one and only time I ever grieved for what my son may not become. From that next moment, and every moment forward, I decided to never put limits on him and allow him to thrive and be everything he was meant to be.

Seven years later, we now know how much progress can be achieved and how absolutely amazing these kids can be. I’m not blowing smoke, I am genuinely in love with and obsessed with our son. Over the years I stopped worrying so much about whether he would be put into general education classes or if he would like sports or group activities and instead I embraced and celebrated what he loved to do and what areas he thrived in.

So if I fully embraced who he is, then why did it take me until after his fifth birthday to use the word “autism”? There are a few reasons that caused me to make this decision right from the start.

By the time Nash was 2, other people could see his differences. He wasn’t waving back or replying to “Hello” and “Goodbye,” let alone more abstract questions like, “How old are you?” or “What’s your favorite color?”

The cashier at the grocery store had no qualms about expressing her opinions and it was becoming more clear each day that the secret was out.

But what was the secret?

Autism was my secret. People speculated but I wasn’t ready to share that word. I was very open about his “special needs” and his receptive and expressive speech delays, but I simply did not want to use the “A” word.

For starters, it is shocking how many people still go instantly to the movie “Rain Man” in their minds when they hear the word autism and I hated that comparison. Also, even though autism education is more and more present, many still do not realize that it is a spectrum and that there are so many varying degrees and levels of this disorder.

I felt that if I kept our description vague, then people wouldn’t make judgements before getting to know my son. I also wondered if that might be something he would want to share for himself instead of me sharing it for him.

As my son got older and I came across families that chose to keep their diagnosis a secret, I realized that the compassion other children had for those kids who were “quirky” but not identified, was very much lacking in comparison to those who were honest about their diagnosis.

I knew of a situation where a boy was exhibiting repetitive behaviors by telling the same story over and over and being socially inappropriate and the other kids around him were irritated and judgmental of him. If the other kids had been told that this child was struggling with Asperger’s syndrome, they would have felt entirely different about his behaviors. I know this for sure because of how wonderfully they worked with the special needs population.

I wanted my son to be able to share his own story if he wanted to, so for the first few years I had a hard time even being with other moms who would talk loudly and yell “autism” within earshot of others, in case someone I knew could hear it. It was a rough time for me because I’ve always been extremely open about all aspects of my life.

By the time my son went to kindergarten and I knew that he would he in a specialized ASD classroom, I felt it was time to share our truth. I personally had to ease into sharing our diagnosis because I felt my son deserved a bit of privacy. I also believed that the public knowledge was limited enough that some would believe he was more different than he actually is.

Then it hit me that no one really knows the personality of another person the first or second time they meet them. It was not necessary for him to prove himself to anyone during the first meeting.

By the time he was 6, I was freely sharing his diagnosis with anyone who asked. I now find myself telling people every day that my son has autism. Even when I could simply say that I have two sons, I choose to add the extra information about my son with autism.

I do get the pity look almost every time I share his diagnosis with anyone who isn’t in the special needs community, but I quickly tell them how amazing he is. He is absolutely our blessing, not our burden.


It took me longer than perhaps it should have to feel comfortable giving my son a public title. I worried about judgement and preconceptions, but coming out was the best thing I could have done for my son and for myself. I met amazing moms who completely understand the challenges we face, and my son is embraced by literally everyone he meets. Kids from school yell “Hello” to him if we see them out in public and his schoolmates volunteer to be his special buddy.

I genuinely believe that if I had stayed in the closet about his autism, he may have been accepted less because the other kids would not understand why he was behaving differently. Perhaps they would have been put off by him instead of embracing him.

I understand why other moms choose to stay in the closet but I cannot express enough how very important it is for the entire family to come flying out and shout it from the rooftops. We are proud of our autism!

A version of this post originally appeared on Birdhouse for Blog.

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I’m sitting in a fast-food restaurant with enough food to feed a family. I’m going to eat the lot. My heart is pounding. I’m excited. In fact, I’m very excited. I’ve been in a state of frenzy since I walked through the doors and the smell of oil and fat hit my nostrils. I know what I’m doing is going to hurt me, but I don’t care. I want to hurt. I want to eat until I’m stuffed. It’s a compulsion. I’m an addict scoring a fix.

I eat quickly, table manners forgotten. I wash it down with huge gulps of soda which helps it all come back up when I purge. For now, though, I just want to eat and eat until my body can take no more.

Like many men, I refused to accept I had an eating disorder for a long time. I have always enjoyed food, and my weight has yo-yoed over the years. I’m 35 now and have only really been comfortable using the word “bulimia” for a year or two. I’m not alone — an estimated 180,000 men in the UK suffer from eating disorders. The full extent of the problem could be even higher because denial and stigma lead the statistics to understate the situation, although in 2011, the British Health Service reported a 66 percent increase in hospital admissions for men with eating disorders in England over the last decade.

I began purging what I ate when I was 16 as a useful means of keeping my weight down after a large meal. Since then it’s become an uncontrollable monster. When I get the urge to binge, nothing can satisfy me until I feel the walls of my stomach stretched almost to breaking point. Purging is a necessary evil, almost a luxury that enables the binge to take place without affecting my waistline. In the moment of the purge, I feel a rush of satisfaction. I’ve beaten the system and gotten away with it — well done, me! Then I’m overcome by emptiness, regret and shame. Later, I get tired and crave sugary food. Sometimes I’ll have a smaller secondary binge and purge on chocolate.

It’s been my little secret for a long time, but I think it’s time men started talking about eating disorders. We need to fight macho stigmas that can ruin lives. Men like me need to be brave enough to speak out on the subject.

Follow this journey on The World of Harv.

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My family lives in an uptown neighborhood of Chicago and the area is among the most diverse in the city. Go for a walk in uptown and in an hour you’ll pass both Buddhist monks walking in silence and women in African garb, laughing and calling to each other as they leave church on Sunday morning. Open the door to Starbucks and hear a multiplicity of languages. Walk by renovated Victorians, condominiums, public housing, community homes for the mentally ill, and tents that serve as homes to people who are otherwise homeless.

The community faces many issues, but the diversity is amazing. Coming from a small, rural, homogeneous town and growing up to be an out lesbian, I place a high premium on surrounding myself with differentness. I originally moved to Chicago looking for sameness in a city with a large LGBTQIA community, but have stayed because I love being part of a place with so much diversity.

So seven years ago, when my son was born with Down syndrome, I had many worries – about his health, his education and his adult future. I did not, however, concern myself with the fact that he is and would be different from both me and his peers in some very distinct ways. But, to my surprise and sometimes my consternation, I often experience the Down syndrome community as a place where differentness is minimized. This is embodied in a the often used assurance to people outside of our community that people like my son are “more alike than different.”

In some ways, I appreciate the intent of the slogan. We all, regardless of our differences, live on a communal plain. I can easily and accurately describe my son in terms that any mother of a 7-year-old might use. My boy loves his mamas, his cat and dog, and the circle of people who comprise his chosen family. He likes music and ball games but is less enamored with the complexities of learning addition. He is scared of doctors. He puts a great deal of energy into skirting the rules we set up to govern our home life.

I do see the importance of his peers understanding him in this light and in seeing commonalities that can form the basis of a friendship. As such, my concern with “more alike the different” has nothing to do with its intent to encourage people to see part of themselves in others. Rather, I dislike the juxtaposition of “alike” and “different,” as if one (alike) is desirable and the other (different) is a negative.

I love different.

Exposure to people with differences is critical to a child developing a broad world view. Different is interesting and adventurous.

Let me describe my son again, this time in terms that the mother of a typical 7-year-old might not relate to. My son has only been potty trained for two months. He needs one-to-one help to manage his school day. He has a spoken vocabulary of less than 50 words.

He lives his life in the moment. He doesn’t label days as being “good” or “bad,” each is a mixture of both, and he makes the most of whatever a given day presents to him.

He has no desire for materialism. He has never asked me to buy him something from the store. He is not jealous of what other children have, only curious.

He makes no judgments of other people. When we walk around our neighborhood he does not discriminate between a person dressed in business attire and one who is filthy from having nowhere to wash their clothes.


Too many people outside of the Down syndrome community see my son only in terms of the differences that are also challenges. I believe this is why so many people trumpet the notion of “more alike than different” – it’s an attempt to quash the stereotype that people with Down syndrome are nothing but amalgamations of inabilities and challenges.

But if I opt out of acknowledging the “different” aspects of my son, I am also ignoring essential positive pieces of his identify. I am discarding the valuable lessons my son has taught me and am also then discouraging others from taking a broad view of what it means to be different.

“Different” doesn’t mean “less than.”

“Different” means that my son has a unique life perspective that has value to people willing and lucky enough to get to know him. He has characteristics worth emulating and challenges that can be eased with empathy. Parsing his identity into ways he is similar and dissimilar to his peers only reduces who he is. Instead of providing unneeded assurances that he is “more alike than different,” I strive to encourage others to take the time to get to know the whole person, to bond over attributes they share with him and to both learn and teach across the differences.

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This is not the way I’d thought I’d start
To share this message from my heart
A question asked from my little buddy
That left Dad feeling somewhat cruddy!

The little voice asked as we left home,
“Does anyone wish Eden didn’t have Down syndrome?”
Mom jumped straight in with no way, no how
While my heart dropped low and my head took a bow.

Now before you go, “Well, that’s just not right!”
And before you try to pick a fight
I love Eden Rose more than anyone
And I hope you understand this when I’m done.

My little girl had all of my heart
From the get go, right from the start
She had me wrapped ’round her little finger
That’s why the pain of this question will linger.

There is nothing to change, not one little thing
She’s my angel, my dream, she makes my heart sing.
She’s funny, loving, determined and sneaky
She’s strong, fierce and a whole heap of cheeky.

Her love is bold, pure and true
Accepting of others, yes, even you!
This world, unfortunately, won’t always see this
And she’ll bare the brunt of those who “take the piss.”

The thought of this cuts deep for me
The father’s heart wants to protect, you see
I would give all I have and then some
To save her from other peoples’ dumb.

Saving from all that hurts or scars
And to set her high among the stars
A love so deep it wants to shield her pain
To keep her away from others’ disdain.

I don’t feel this way from a diagnosis
It’s this broken world that brings my prognosis
The fear of “different” that eats away
It stops us from just saying G’day.

There is nothing here that you can catch
But a beautiful relationship just might hatch
If you stop for a moment and truly see,
It’s not the “dis,” but the ability.

My angel was sent to me from above,
To show us what it means to love
So after all this, it’s not her, it’s us —
We need to change our prejudice.

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RELATED: What’s One Thing You Wish People Knew About Down Syndrome?

This post originally appeared on Perfect By Design X2

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As an adult on the spectrum, I am often asked what a sensory overload feels like. I can tell you from my perspective what it feels like, as well as how I think you can help your child.

Here’s an example of an overload for me: I have a nice day planned, something I’ve been looking forward to for weeks. Let’s say an open-air concert. The weather may be fine, and the company pleasant, but a dull pain starts behind my eyes.

It’s bright and crowded, people are talking on all sides of me. There’s an incredible amount of noise, a steady drone that breaks into separate, painful sparks of color in front of my eyes. Someone near me desperately needs advice on how much aftershave is attractive and how much is offensive to the olfactory system.

I press on my eyes with the heels if my hands and then the nausea begins. Everything’s spinning, though I know I haven’t moved. The slightest touch could start me screaming and thrashing out because I am now in fight-or-flight mode; such is the amount of pain I’m feeling. Even my hair moving in my scalp hurts.

I sink down to the floor to feel something solid to ground myself upon, proprioceptive feedback being vital at this moment. I bite the back of my hand to regulate and breathe slowly, but the nausea won’t leave! I need to get home and lie down in the dark, a weighted blanket and silence my only companions.

Now imagine how that feels to a child in a busy supermarket? That’s why your child holds their ears, covers their eyes and sinks to the floor.

To avoid sensory overload, try to shop when it’s quiet and not too busy. A compression vest is great for proprioceptive feedback, as is an eye mask with a thin soft sponge in each socket cover to apply soft pressure to the eyes. It can be soothing. The last thing to try is deep pressure massage if your child craves touch .

Lying on a bed, feeling the room shift around you even though you are lying still, is incredibly nauseating, so afterward, offer your child a warm, soothing bath and plenty of tactile feedback if they need seek it.

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I totally cheated at nap time today. I snuggled Brandon in his bed until he feel asleep. Will I pay for it tomorrow? Possibly. He may decide that he doesn’t want to take a nap because he wants Mommy to lie with him again. But I have to trust my instincts, and mine told me it was okay to bend the rules today.

Brandon was making a lot of noise in his room. I checked the nanny cam and he was lying by the door. He only sleeps at nap time about 50 percent of the time, but he does stay in bed. Before going in to lay him back in bed, I waited a couple minutes to see what he was going to do. He went back to his bed, and just sat there staring straight ahead.

Something just didn’t seem right. I can’t really explain it, but my instincts were telling me that he wasn’t just being defiant. I opened the door and he ran up to me, jumped in my arms, and buried his head in my neck. Brandon is a very affectionate child, and does like to be held, so that part wasn’t weird. But it was weird that he was so quick to need my affection when I opened the door. Again, this is hard to explain… I just knew something wasn’t quite right — a mother’s intuition.

My main strategy for getting Brandon to sleep in his big boy bed is to be consistent. As is I said in my post about this, I am not perfect. I cheated. I laid down in that teeny tiny toddler bed with him and let him lie on my shoulder. He was very still. After a few moments, it clicked. Our neighbors are having work done in their backyard. There’s a lot of weird constructions sounds happening out there. It’s a small project. It’s not very loud, but you can hear it. He fell asleep in five minutes… if that.

He was tired, and wanted to sleep, but something about the sounds bothered him. I don’t know if they made him nervous, or just annoyed him.

Can you imagine being 3 and not being able to communicate something like this to your mommy? He just expected me to lay him back in his bed without saying a word. It breaks my heart to think about this.

Now he is napping soundly in his bed. It was one of those times that I had to break my own rule in order make this through this autism journey. I’m glad I did. I know this doesn’t seem like a huge deal to the average parent. So what… I snuggled my son to sleep; but any autism parent can tell you that breaking consistency with something like bedtime can throw you off for weeks.

Oh well. We’ll just have to see what happens.

All parents can tell you this though: Sometimes you just have to go with your gut and do the best you can!

This post originally appeared on Ramblings of a Special Mom.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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