I See You Over There

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I see you there, shaking your head in silent judgment as my son argues with me in public.

I see you there, making a face and rolling your eyes when my son doesn’t behave the way society expects him to behave in public places.

I see you there, telling your son not to play with, or talk to, my son because you think he’s a bad kid, a disrespectful kid, a problem kid.

My son doesn’t notice you. He’s too busy to be concerned by what other people think of him, but I notice you. I see the judgment on your face.

Do you think that I can’t see you? Do you think that somehow I love my child less than you love yours because God made him special? Do you think that somehow you and your child are better than me and my child because you don’t have the same issues that we do?

Do you know how hard it is for me to remain silent when I see you judging my child? Do you know how badly I want to call you out in front of everyone here and say “I see you! I see you judging us!”, but unlike my son, I am hesitant to make a scene. More importantly, he hasn’t noticed you yet and I’d prefer he never does. I’d prefer he never realize that some people judge him and find him lacking in some way. He is perfectly happy with who he is, he’s perfectly content in his own skin, he doesn’t think he has any issues at all. I’d prefer to keep it that way for as long as possible.

Every person on this planet has some kind of issue. Perfection is an illusion. It just may be that your flaw is judging other people.

There are a lot of things about my child that you don’t see. You don’t know that he loves me with his whole heart, without reservation and without hesitation. You don’t see that he is fiercely protective of the people he loves and he would be deeply upset to know that you had upset me with your actions. You don’t see that he is an amazing student, and gets fantastic grades at school.  You don’t see that sometimes he frustrates me beyond belief, but he is my child and I love him just as fiercely as he loves me.  You don’t see that he is funny. That his unique perspective, and view of life, combined with the fact that he has no hesitation to point out anything he notices often makes me laugh until I have tears rolling down my face.  You don’t see that he feels things deeper than most people, that includes both joy and hurt.

No, you don’t see any of that because you don’t care. All you care about is that he is talking a little too loudly for your taste. That he is distracted by a piece of fuzz on his shirt when he should be listening. That he is emotional at times, and gets upset easily.

Because of these things you’ve decided he’s a bad kid, that he’s unintelligent, and that he’s not worthy of your time or attention.

Guess what? You are not worthy of mine, either.

He is honest, he is authentic, and he doesn’t judge other people. He has empathy, he has compassion, and he cares about others. He is always working to be the best that he can be, and he doesn’t waste his time looking down at other people. He’s enjoying his life and he is enjoying everything that crosses his path.

Don’t you wish you could say the same?

Related post: Looking for a Land of Empathy and Wonder 

I Thought We Had More Time

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I sad because my legs no work so good.  I no run fast like Parker. My legs no work.

It’s the heavy silence that follows the bomb dropping, where all you can hear is the sound of your own heartbeat pounding out its instantly accelerated rhythm in your ears, followed by the air slowly leaving your body – the breath you’ve been holding since he said it.

Someone should say something.  Someone should tell him it’s okay, that he’s perfect, that we knew things would be tough and that they likely always will be but that we will get by. Together.

Isn’t someone going to say something?  Because I am doing all that I can just to hold back from letting out this sob that is building up in the back of my throat in the seconds since those words came out of his beautiful rosebud mouth just dripping with sadness.

But it is only me in the car with him.  And Parker.  And I am supposed to be the one to soothe him, to tell him…what on Earth am I supposed to tell him?  That it will be fine? That it sucks? That I’m sorry?

I thought we had more time.

I thought that we would’t be here yet, that at four years old, this boy – my beautiful boy that finally definitively learned last week that he is a boy, that can remember that my name is “Jamie” but still can’t consistently recall his father’s name, that thinks that the thing he poops out of is called his “tushie” and the thing he pees out of is also called his “tushie” – well, I thought we had more time.

I thought he had more time.

More time to walk through this world oblivious to having Cerebral Palsy, more time before he was aware of the cruelty that the cocktail of fate or genetics or bad luck or me not taking my prenatal vitamins regularly enough served up to him.

That was another of our “silver linings” – of the platitudes we told ourselves about his cognitive deficits, about how, At least he doesn’t realize it.  At least he’s not aware of all of this – that he’s different – that most kids don’t have to work so hard just to get through each day and that it is not normal to have eight hours of therapy every week.  At least he doesn’t realize that he’s different, we told ourselves and each other. Thank God for that.

But he knows now.  Something that revealed itself on our drive to school this morning when Parker told me that Owen doesn’t look so good.  I peered at him through the rearview mirror half-expecting him to be some horrendous shade of green, but his coloring was fine.  I assumed it was likely because he was still upset that Scott told him he couldn’t wear his Oscar the Grouch watch to school today.  Seeing this as an opportunity for good communication between them and a chance to have Owen talk about his feelings, I suggested to Parker that she ask him what was wrong.

Owey, What’s wrong? She asked sweetly.

I sad. He replied.

Why are you sad? She pursued.

I sad because my legs no work so good. I no run fast like Parker. My legs no work.  He responded.

I think I gasped. Quietly, but it happened.

And then Parker saved me.  This five year old who knows – my God does she know more than she ever should have to, than any of us should – she saved me. She just jumped right in and she gave him the best pep talk I’ve ever heard.

“No Owey, you’re going to be really fast one day.  You can grow into my sneakers soon and I’ll give them to you – even though they’re pink – because they light up and that makes people really fast.  And you should ask Daddy to help you with your running skills.  Daddy’s really good at stuff like that.  I bet you’ll even beat me one day!”  She told him.

Telling her little brother that one day he would beat her in a race was the very height of generosity for my girl.  For this little thing that has problems of her own – arthritis and sensory issues plaguing both her strength and her self confidence – her speed is the one physical trait she treasures and takes pride in.

And she gave it to him.  With absolutely no hesitation, no reservations.  She gave him that.

I thought she had more time.

Before she needed to start giving him pep talks and worrying about standing up for him and explaining things to him and for him.  She’s only five.  She’s not even in Kindergarten and somehow she just knew that he needed this.

And then we pulled up to his school, and I dropped him off, letting his therapist know that he was feeling a little sad today.  He kissed me goodbye and looked at me with those clear blue-green eyes of his, the ones that always make people comment simply Those eyes!, and they were cast down a bit – no smile crinkles at the corners, no usual sparkle.  Something in him had made the connection and he was feeling it.

It’s when you know that thing that you can’t un-know.

It’s when you see that look in your child’s eyes that you can’t un-see, or you hear that profound sadness in his voice that you can’t un-hear.

It’s unbearable.  I ache for him – for his little heart that knows now.

And I dropped Parker off a few minutes later at her school, having turned to her at the first red light to tell her how incredibly proud I was of her.  How she showed such generosity, and grace, and love towards her brother in those moments.

And then I called Scott as I pulled out of the driveway of her school, and told him what had just happened and finally set free all of those tears that had been impatiently waiting to be shed.  And I wondered aloud what we were going to do, what we were going to tell our boy, how we were going to explain all of this to him.

I have cried on and off all morning – thinking about that conversation this morning and the conversations that are inevitably going to follow it.

And I still have absolutely no idea what to tell him.  There are things that a hug and a kiss can’t fix.  That I don’t know is the only response to, and yet still grossly insufficient.  There are I’m sorrys that I want to utter quietly to him, that I want to scream and cry in frustration for him – wanting him to know that I’m sorry this happened to him, that he didn’t deserve it, that I wish it had happened to me instead – all the while making clear to him all the reasons I’m not sorry – not for a single second that he is mine, that I wouldn’t want anyone but him to call my son, that there have been four long years now that he has made me proud each day without ever knowing why.

But he knows now.

I thought we had more time.

5 Things to Keep in Mind While Raising a Wild Child

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The crib used to contain them, provide some sort of barrier between them and the ground. And then one day, they get brave enough to climb over the “great wall,” open the door, and look at you in a whole new way. It’s the beginning of their belief that limits CAN in fact be stretched, altered, and broken. The world becomes exciting in a whole new way.

My son has not stopped moving since he penetrated the wall. I have been told, “Oh, it’s a boy thing,” but I have seen many a little girl with the same crazed look in her eyes. The madness that only comes from being born a Wild Child. Over the years, we have tried to adapt to some of his ways because it has become very clear he is way too resistant to many of the ways of the less wild. He is house trained, but that’s where it ends. When he gets out in the world, he is an explorer wanting to find out everything there is to know about everything by running, jumping, or clawing his way towards his discovery. He is complex and emotional and on a mission to completely exhaust his parents, bringing them just to the brink of insanity before gently easing them off the ledge with a sweet kiss and perfectly timed fart in the face.

He is the love of my life, and I truly wouldn’t change my son for anything, but come on, some days are just relentless. Here are some things to keep in mind if you find yourself in the same place:

1.  Surround yourself with compassionate people.  Let’s face a fact that is hard, but true. Some people suck. I’m sorry, but some of them just do. A few weeks ago, I took my 4-year-old son to the bouncy place. With all that energy, it’s the perfect outlet for him. I have been in some uncomfortable situations with my son. I am constantly apologizing for his behavior, even when I sometimes shouldn’t. But there I am, apologizing my way through play dates and get-togethers. But on this particular day, there were two other moms in one of the bouncers with much younger kids. My son was bouncing up and down with a perm-a-smile on his face. I apologized because I could tell they were clearly annoyed. Ignoring me, they actually got out and gave my 4-year-old the stink eye. Never before had I spoken up, but I couldn’t help myself. He actually had done nothing wrong, and it hurt. I said something about how horrible it was that they allowed children to bounce in the place. One of the moms just rolled her eyes and moved on. People suck. Aren’t all mothers on the same journey? Shouldn’t we be united or something? I don’t get it. Why is it so difficult to give a nod or smile? And the looks when my son is actually having a difficult time controlling himself, they can sting. I don’t have time for it anymore. Surrounding yourself with people who get you makes all the difference. My days are much more enlightening the more I fill them with empathetic ears and a heart big enough to care about all kinds of children, not just the “easy” ones.

2.  Erase jealousy and embrace gratitude.  I will admit that, on more than one occasion, I have walked by a story time session at the mall and become taken over by envy seeing all the children lined up, sitting on the carpet, listening to words being read to them. My son does not sit well. He never has. I used to check his butt for some kind of hideous rash that perhaps hurt really badly when he sat on it. Nope. It’s just not something he is programmed for. Maybe his species has adapted over time and the only way for survival is constant motion. I feel it when I go to his classroom early for a holiday party, and I feel it at a restaurant. The green-eyed monster emerges. I secretly wished my son were like that— following all the rules easily and sitting like all the other kids. But that’s not my reality. So how do I make the jealousy go away?

I embrace gratitude. I have a healthy, energetic, 4-year-old boy, and I am grateful. I check on him several times at night before I go to bed. It’s my opportunity to stare at what I created and to just take a few minutes to breathe and reflect and just feel gratitude that this boy is mine for a short time. I try to remember that one day that untamed energy will be harnessed into something more controlled, into a passion for what he loves. And my energy will be spent cheering him on.

3.  When in doubt, fire a heat-seeking missile.  Or a torpedo. Take your pick. My son can be more than just difficult sometimes. Some days begin with him climbing into our bed and kicking me in the face as he carelessly steps over me. And then the fun begins. He’ll cry all the way to school because we forgot his special blanket, and then he’ll cry the entire way home after I pick him up because I brought him the blanket, which he says “lives” at home and therefore does not belong in the car. Sometimes it seems like a reality show. Perhaps Survivor. We spend the day manipulating each other to get the desired outcome we each want. Pretty much every time we go to leave anywhere, I have to tell him goodbye – as if I’m leaving without him – just to get him to come with me. Then he runs toward me all upset because his horrible mother is leaving him. When he wants something, he asks me while shaking his head yes. I must say, his method is very powerful. Then when he hears “no,” the anger takes hold. The back and forth can be exhausting. I get so irritated when things that should be very easy suddenly become very difficult. What I have to remember though is my little man’s weakness. The kid can’t resist a full-on tickle attack by heat seeking missile fingers. When the missiles have been launched, that smile I love quickly fills his face. He is putty in my hands and finally ready to put his shoes on, or get in the car. Making him laugh when he is frustrated or angry has helped us both. It’s not a guarantee, but it’s a start.

4.  A good ugly cry can actually be quite beautiful. I used to think that after a bad day, a cry meant some sort of failure, like it was the final screw up because I couldn’t hold it together. Maybe it’s because, when I was young, I used to cry all the time, and for whatever reason, I would then add on a secondary session of crying because I was so upset about the first cry. Now,  I look at a good cry like a shower of sorts. I feel a little more refreshed afterwards and ready to move on and deal with whatever I need to. A good, devastatingly ugly cry is sometimes just the thing to make for a beautiful rest of the day. Don’t get me wrong, life is good. In fact, in the past I have cried because I felt terrible about myself that I was upset enough to cry when my life isn’t really that bad. I used to think, “There are people living on the streets. Why do I have the right to complain?” Well, unfortunately, I am human and flawed by design, so I do have to cry sometimes because I do get overwhelmed. For example, the other day my son spent a majority of the day in time-out for hitting. I began to realize that the vibe in the house was way off – too negative. It was a long day. He was really pushing me, and as much as I told myself to stay calm and ignore the behaviors, it got to me. The real problem is that the world still revolves and a multitude of things happen in our lives at the same time. My son is not listening, a family member is sick, there are bills to be paid, friends to help, dinner to make, and the list goes on. And these are everyday problems, and they can be handled, maybe sometimes just after a good, hearty cry.

5. Prepare for that which you can not prepare for. George Washington said, “To be prepared for war is one of the most effective means of preserving peace.” I think this stands true when raising wild children as well. I will never forget being at a restaurant with my son when he was younger. As usual, he would not sit still and was becoming louder and louder. A woman sitting at a table next to us handed my son a book. She was prepared. It seems so simple, yet a giant light bulb went off. The normal toys I brought with me were just that. They were typical, boring. So now I travel with enough ammunition to completely blindside the enemy. Whether it is a coloring book or a homemade laminated placemat with a dry-erase marker, I am ready with a bag full of distractions. I never realized the impact of distraction until I got creative. I have had people tell me a child needs to learn how to just sit at a restaurant without any distractions so they can get used to it and learn. Ha! I have been tempted to have them take my son out to eat. They would probably end up letting him dump out all the salt and pepper shakers and use the mustard and ketchup to make a Pollock painting on the table just to keep him busy and their sanity in tact. I don’t want to keep my son out of situations because it’s easier. I want to keep throwing him in the water until he learns how to swim. Sometimes you just have to start by using floaties.

Related post: What You Don’t Know About that Unruly Child

A Letter to the New Autism Parent

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Welcome to Club Spectrum!

You didn’t want to be here, but don’t feel bad about that — nobody signs up for this gig. But think of it this way: At least you now know what the hell is going on now. And here are some tips to help you navigate the way:

1. Pace yourself. You are about to start a never ending marathon. Know when to take a break. Embrace the couch and some bad TV. Or if you are one of those gym goers, do that. Avid reader? Go fire up that kindle or go old school and buy a few books. You’re going to have a lot of time in therapy waiting rooms. Might as well enjoy reading some check your brain at the door novels. Know it’s okay to get absolutely nothing done on some days. Or weeks.

2. Get off the Internet. It can scare the crap out of you. Seriously, stop playing Dr. Autism Google. You’re looking for the autism cure needle in a Internet haystack. Step away from the search engine.

3. Get on the Internet. I know, opposite advice. Here’s the twist. Get on social networking sites. Talk to other parents. Get to know them. Not just what they did to treat X Y and Z. You’ll get a better understanding if those choices are right for you. Autism can make parents feel very isolated. Sometimes it is hard to get out and network. Facebook, Twitter, and online groups are awesome. Mainly because when you are in the dark on your kid’s iPad hoping like heck the melatonin will kick in soon, you can chat away. (Don’t you go Googling melatonin yet. You read this all first buddy!) Autism parents/caregivers are always awake somewhere on the planet.

4. Be prepared to hear a lot of advice you did not ask for. Warning, it never ends. I find sarcasm and raising my eyebrows over my glasses helps a lot.

5. Respect your elders in the ASD world. Now don’t go taking their world as gospel, but recognize what they do works for them. You’ll see why as you earn your stripes. The kiddo is 8 and we’ve been dealing with all things autism since he was before 2. Trust me newb, what you are telling me to try, we’ve done. Seriously, do you really want to be the type of person I just described in item number 4? Don’t be that know it all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6. Accept the fact that you are going to try stuff that is totally not going to work. That miracle thingie you just read about in a chat group won’t do jack all for your kid. Meanwhile every other kid who has, is thriving. It’s the luck of the draw with this folks. You meet one kid with autism, you have only met one kid with autism. Some cures/therapy/meds will be duds.

7. Autism is effing expensive. So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING! Don’t be afraid to ask for therapy and or lessons for something as gifts. These folks care about you and your kid. They’ll be happy to know what they bought is actually getting used. Not sitting around collecting dust.

8. Accept that some folks who buy gifts for your kid won’t do the above. You’re going to get a lot of gifts that your kid won’t even be remotely interested in. They meant well. They knew it was a hot toy. Save it. You never know. Maybe in a year or two, they might like it. Or donate it. Regift it. Return it for therapy cash.

9. Be open to doing stuff you think is ridiculous. You really just don’t know what your kid is going to respond too. Give it an honest college try before you realize if it’s a hit or a miss. This means diet, meds, therapy, supplements etc. Just try.

10. Take your kid out everywhere. I’m serious. It may be small trips at first, but it is the best thing you can do. You’re teaching them coping skills. Life happens. People have to food shop, go to the bank, post office etc. You would be doing it anyway, if they didn’t have autism. Know their limits of course. Baby steps first. Today, it’s a trip to buy milk. Another time, maybe it’s a trip to the pet store and the library. Life from now on will take military like planning. Warn them what’s coming, but go about your business. They smell fear. Seriously, the more panicked you are, they will turn that dial to “11″.

11. Allow yourself a pity party. Moan, cry, rant and rave and do it when you need too. More than once. Just remember you still have a kid that needs you. So, don’t dwell in it too long. If you find yourself doing it to far to frequently, know when to ask for help. Be it from a partner, family member, friend, or doctor. Yes, this isn’t what you planned but it’s here. So, now what? Exactly.

This isn’t about getting through it to an end point, this is your life now. This is your new normal. I can’t promise it will get easier. You will just get better at dealing with it. Be it through humor, prayer, yoga, crafting, blogging, or a thousand other escapism activities. You will do this. You can do this. Remember for as hard as you are working, so is your child. So now and then, relax and just order another side of fries.

Related post: 6 Perks to Having an Autistic Child

The Decision to Medicate

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The Decision to Medicate

The fourth pharmacy I tried finally took the prescription from my hands. “Yes, we have this,” the pharmacist replied. “But just so you know, it is a controlled substance. You will need to have a new prescription handwritten from your doctor every month to obtain refills.”

I nodded my head and looked away quickly, trying to hold it together. She filled the bottle with thirty innocuous-looking capsules and sent it to me through a chute in a bag filled with paperwork. “Do you have any questions?”

Yes. Yes, I have a million questions. “No, thank you,” I said, and I rolled up my car window and drove away, the tears already down my cheeks as I made the turn out of the pharmacy parking lot.

When I was pregnant with my son, I followed every rule. I took all my prenatal vitamins. I didn’t drink artificial sweeteners, didn’t eat deli meat, didn’t let a drop of alcohol pass my lips. I craved Thai food and wasabi, but I wouldn’t eat it with raw sushi, only cooked. I wouldn’t let my bathwater get too hot and I didn’t take so much as a Tylenol. I was the kind of pregnant woman who found reassurance and security in the “rules;” I didn’t mind playing it safe for nine months. It made me feel better, like I was guaranteeing something with my puritanical abstinence. I was relieved when he was born hale and hearty.

Ten years later, in the worn passenger seat of my beleaguered minivan, I had a bottle of amphetamines with that baby’s name on it. I held the bottle in my hand as I read through the literature in the parking lot of Starbucks, unable to take it home quite yet. Among the potential side effects: increased blood pressure and heart rate, psychotic symptoms such as hearing voices, addiction, sudden death. I placed my head on the steering wheel and opened the floodgates.

We are the family that never has Motrin handy when someone has a headache or a fever. We don’t even take vitamins. We’re not opposed to medication, but we take it so rarely that we’re always throwing out expired bottles. I try to find the “safest” sunscreen, I give my boys the kind of deodorant that doesn’t have aluminum or parabens in it, and I buy organic produce and milk. In general, I am risk-averse. The thought of putting my child on what is essentially speed is, frankly, horrifying to me.

This is a child I exclusively breastfed for over a year just to avoid changing the “flora and fauna of his gut” by introducing formula into his diet. That notion seems so ridiculous and naive to me now, as I  change his brain chemistry with drugs. On purpose. 

Years of questions came before that moment I placed my head on my steering wheel. Is this normal? Why isn’t he happy? Why does he hate school? Why is he angry all the time? Can we help him? How do we help him? Will he always be like this? There were so many nights I cried myself to sleep, so many times I begged for an answer. I read books and websites. We saw doctors, counselors, therapists, psychiatrists. We tried cognitive behavioral therapy, breathing exercises, and coping strategies. As it turns out, the human brain is is not simple. There are no easy, sure answers.

I read articles that terrified me, others that shamed me. I considered alternative schools or homeschooling, but that is not what my son wanted, and his issues were not confined, or even really centered around, school. He wanted stability and to stay with his friends, the people who make him happiest; I couldn’t take him away from them. I worked with his teachers, all of whom loved him, worked with him and me, emailed and called me regularly. After three years of trying everything else, we exhausted all our other possibilities. It was time to try medication.

So we did, but not without great reluctance and hesitation. Not without hearts so heavy that I had moments when I seriously considered the thought that I just couldn’t do it. How do you give your child a controlled substance, addictive drugs, and act like it’s a normal thing to do? No mother ever starts a journey with a child thinking that she will end up medicating her baby. But on the other hand, how do you not try everything in your power to help your child who struggles every day of his life with demons you cannot beat down through sheer force of will and all the therapy money can buy? I said I would do anything to make the world easier for my little boy, who loves so fiercely and works so hard and yet still struggles. I had to try.

Parenting, from start to finish, is one big leap of faith. All we do – from the moment someone places a baby in our eager arms to the moment we watch our grown children walk away from us under their own power – is gather the information we have at any given moment and make the best decision we can with that information. There are always a million unknowns, a million what-ifs, a million possibilities at play, but in the end, we have to trust ourselves and make a decision. It’s the most frightening part of parenting: at some point, we are forced to understand that no matter how many rules we follow and no matter how much research we do, we can never know or control everything. There are no guarantees. We might make the wrong decision. We might make the right one. We can’t see that far ahead, but we have to move forward anyway.

So we hold our children’s hands, and we jump.

I can’t say yet if medication is the answer, or if it will change my son’s life our our family’s. I can’t say if it will finally lift the burden of whatever weighs down his shoulders and his heart and allow him to smile more often at home and maybe even enjoy school, where he has always received mostly As and he is well loved, but he has been miserable. I can say that I have seen flashes of light, glimpses of smiles I would not have seen before, and a calm in our house that we have never known in the past few weeks.

And for the first time in a long time, I have hope.

How I Cured the Autism “Problem” in Our House

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When my autistic son, Dominic, was four years old he ate nearly every piece of a foam puzzle while I was in the shower.  He seemed fine enough when I came out, looked at me with his round, cornflower eyes blinking.  He wasn’t the least bit distressed. But I was pretty flipping upset.

“Why did you do that?”  I asked him, with the fear in my voice palpable.

He looked unconcerned, but turned his little head up to me.

“What do you think you are, a goat?” I asked him, with the frustration in my voice palpable.
He looked at me still, no expression.

Here’s what he was probably thinking: Her face is much prettier from far away.

Here’s what he said: Nothing.

Then again, he did have autism and couldn’t speak.

I shook my head at him, firmly.  “NO!”  I said, pointing to the pieces of chewed up foam that remained.  “NO EAT!”

He shook his head in imitation. Then again and again.

He was still shaking his head when I wrapped him and his brother in their snowsuits and drove to the Children’s Emergency Room.

The doctors there determined the foam wasn’t going to cause him much harm, but they admitted him to the hospital for a day of observation.  Maybe they just felt sorry for me and thought I could use a break.  Pregnant mom shows up with two toddlers in her arms, one with severe autism who has a penchant for eating plastic. You throw her a freaking bone, right? I didn’t have the heart to mention I had a 6 year old daughter waiting to be picked up from school or perhaps wandering the streets of our neighborhood by that time. Sometimes people can only take so much.

While Dominic was in the hospital, I asked nicely for a psychiatric consultation.  Well, I kicked my feet and pounded my fists on the ground and threw a major temper tantrum, but then, after people began to stare, I decided to use my words.  The resident said that the Child Psychiatrist probably wouldn’t be willing to come.

Luckily, the resident was wrong.

Since Dominic was diagnosed at age 2, we had seen therapists at school and community mental health.  We had seen psychologists and social workers and speech professionals.  I was desperate and afraid I wasn’t doing enough, giving enough.  I spent some days huddled up in the corner of the kitchen, so paralyzed by the daunting task of “fixing” Dominic’s behaviors that I, too, was flapping and jumping and rocking. Other days I was developing complicated systems of therapy, aimed at resolving the finger waving, the moaning, the rituals that slowed him down and kept him from my vision of “living”.  But we had never seen a child psychiatrist and with the chances of another Gregory the Goat-like episode looming, I had so many questions.

The doctor was brisk without being bristly, matter of fact in the most consolatory ways. He said lots of things that day that left Dominic’s father and I with a mixture of understanding and fear.  It was the first time someone spoke harshly, honestly to us about our son’s condition, a condition that was just starting to infiltrate every corridor of the media and overwhelm our functioning.

“Your son has classic autism. ” the Child Psychiatrist said.  “There’s no cure.  Anyone who tells you they ‘cured’ their child of autism didn’t have a child with autism.  It’s that plain.”

And instead of sadness, I felt relief.

It seemed okay to me suddenly, to stop fighting the demon then.  I couldn’t see the demon after all, how could I tell how big and sharp his teeth were? I was sick of my invisible enemy. It was running my life.

It was going to be a battle that would only defeat us all in the end if I didn’t find a way out, I had known this but didn’t want to admit it.

And something worse had been nagging me for months, something I didn’t like saying then and I know makes people uncomfortable to hear me say now.  But the truth is, Dominic didn’t seem to really mind being autistic.  In fact, he kind of seemed sort of…really….happy.

So from that day forward, I stopped trying to cure my son of who he was.

This doesn’t mean I didn’t send him to occupational or speech therapy.  It doesn’t mean I didn’t find him the best school or tell him “No” when he would jump up and down in the middle of the family room, while the other kids were trying to watch The Goonies.  I still believed in therapy and supports. I still believed in giving him the best.

It just meant that I began to expect from him only as much as it was possible for him to give me. Frankly, I just tried to–still try to–help Dominic be the best Dominic he could be.

What it really meant most of all is that I stopped trying to banish the autism from Dominic’s life (or my life) and just started letting my son live with it.

It was a part of him, just like his blue eyes and love of eating all things foam.

And that’s the story of how, instead of shadowboxing the unseen enemy, I invited autism in for tea, but only if he agreed to be on his best behavior.

And it feels nicer this way, for me.  I understand it can’t work for everyone.  Maybe letting go of fighting the diagnosis, for some parents, would leave them with a powerlessness. Maybe some people would see this as giving up, as being weak.

I just see it as getting on with things.

And I don’t mind if other parents don’t think this is something they can do.  I just don’t want to have an argument over the whole thing. The autistic community is fractured over so much already.

Me, as a mom, accepting Dominic’s diagnosis isn’t a cause for debate.  There’s already too much cause for debate.  Aren’t we really are all the same?

We are, collectively, the moms of the flappers, the jumpers, the wanderers, the pickers, the groaners, the moaners, the kids that makes people stare and laugh and feel sorry for us.
Divisiveness over vaccines and diets and acceptance—those are just ways to get sidetracked, red herrings meant to divide us.  Let’s just agree to disagree sometimes.

And. Let’s not get distracted from the real issue, the one that we all seem to universally agree on–the one that unites even the fiercest enemies in our divided autistic community.

Let’s all agree to focus our energy, together, in a much more useful direction, one that every mother of an autistic child seems to embrace wholeheartedly——-

Hating Jenny McCarthy.

There.

Doesn’t that feel better?

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 post: I Never Knew I Wanted a Child with Down Syndrome

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.