Autistics Speaking Day - Autism Mom Speaking

Today is Autistics Speaking Day. While I’m not Autistic, my son is. Because he has Autism and because he’s only 4, today I am his voice. Most days I am his voice, though sometimes that frustrates him, because he wants to speak for himself. Sometimes it’s OK with him, because he’s starting to understand that most people can’t understand him, and that I’m his interpreter.

The first thing that I would like to say for Jaden is that, if people would take the time to slow down and listen to him, they might hear him without my help. He has a lot to say, but it doesn’t come out easy for him. He works harder at talking than most people do at listening.  I’ve seen him follow people, repeating a sentence so as to make sure he articulated in a way that might be understood – really working at it – only to have those people not notice his efforts. I know the reasons are because 1. He’s a child. 2. He’s a child that’s hard to understand (those combined seem to trigger some automatic shutoff switch in adults.) 3. Adults aren’t used to children being so desperate to talk to adults. 4. He doesn’t usually look right at you when he talks and his attention seems to be elsewhere, so it’s easy to dismiss him. 5. His body movements are erratic when he’s excited, which he usually is when trying to talk to someone.

I’m saddened, angry, heartbroken and literally sick for Jaden when I see him work to get someone’s attention in vain. He tries so hard. Jaden is speaking but no one’s listening. I worry what that will do to him and his self-esteem through the years. Mommy’s love and attention will not always be enough. 

So on his behalf, I ask everyone to pay more attention to who might be trying to say something to you. Not just Jaden, but anyone that might communicate in unorthodox ways. Even neurotypical children can have very untypical ways of trying to communicate something. It takes maturity to be articulate. A kick and a scream might be code for “I feel really wrong right now, and I have no idea how to handle it. HELP me!”

Now, I want to speak for myself as a parent to an Autistic child.

As some of you know, it’s been about a year and two months since we realized that Jaden wasn’t developing normally. It’s been only 3 months – has it only been 3 months? Hasn’t been forever? – since he was diagnosed with Autism.

During that year, I was forced to see something that I only saw in the peripheral (the corner of my mind’s eye, so to speak); that children and adults with disabilities are invisible little ghosts that not many people think about or want to think about unless that person has a family member with Special Needs. What pains me is my own memories of being in school during recess and glancing over at the Special Ed wing, briefly curious about the children there whom I never saw. The children that some of my classmates would mimic in mocking manners to each other. The children who had different schedules and lunch breaks and busses than we did, even in my tiny school. I can’t tell you anything about them because I never saw them. Even the windows were tinted too dark to see inside.

And I can say that this is all just as well. Because I knew my classmates, and how heartlessly they harassed anyone who was different from them. I know because I was different. How much worse it would have been for a child with developmental disabilities.

So these things I’ve thought about, and grieved over, in the past year.

But nothing had prepared me for the real horror of it, and of Autism.

After the diagnosis the grief and the pain had to go somewhere, needed some outlet. I’m a mother to a child who needs a lot of attention. I didn’t have the luxury of a nervous breakdown, I didn’t have the time to lay in bed for a month crying over it.

Instead I spent most of my nights until the break of dawn online researching and writing.

One night I came across a comment on a board that mentioned “those 3x4 boxes they used to have in Sumner County schools.”

What? Was I misunderstanding, because it sounded like these boxes were for CHIDLREN. Surely not. So implausible that I dismissed it as urban legend. Until another little comment somewhere prompted a search.

My heart is breaking right now so I will just say that you know the conclusion of what ended up being months of research. If you haven’t read my articles about it you can see them here.

But that’s not all. Because from the beginning of my time online with “Autism” in the Google search box, a lot of the off comments made were by the parents themselves. Don’t get me wrong. All of the parents I’ve actually met and most I’ve heard from online are amazing people who adore their children. But many of the voices that are heard are parents who like to tell about how “… but this is child I was given, so now I have to deal with it.” “No one knows how hard it is, how awful it is, to raise a child with Autism.” They would often launch into detail of the awful thing they call life with a child with Autism.

I’m probably going to make a few enemies with this statement. But I wish those munchausen moms would shut the hell up. These are our children, and unfortunately to a portion of the world that doesn’t know any better, they’re representing me. And representing those amazing parents who adore their children. Pity-mongering is like sex with a stranger, it may feel good for the moment but in the morning no one respects you. Ultimately they’re working at odds with themselves because pity will not gain their children respect as a person. Quite the opposite.

So let me break it down as my own Autism Mom Speaking Day. Don’t pity me because I have an amazing child. I wouldn’t trade him and his beautiful mind for anything in the universe. If God could take me back and ask me what I wanted, it would be him a million times over (plus infinity, but I’d ask Him to stop asking me before we got to that point.)

What we have here is a serious problem in this country. I won’t digress (yet) into a full-on rant about social norms, because God and my husband knows I sure can. But they do and always have caused evil and destruction. It’s the mob mentality in full-fledged life-long form. It is. Think about it for a while.

Right now our social norms dictate, among many other evil things, that we should get all up in arms if a dog is thrown out of a car or half-starved, and the owners would go to jail. But if a child with Special Needs is locked in a cell or restrained until they’re broken, or if a gang of 3 young men physically torture a teen with Autism for hours, or a fat teacher sits on and kills a child with disabilities, or if a child is withheld food on an ongoing basis as a form of “behavior modification,” or if an aid sits on a child with Autism while he’s being confined in a straightjacket until he stops breathing then goes about his day like nothing happened, they don’t even get a night in jail. Sadly, I could go on and on and on.

These children are worth less than our animals. Please read that. If these things were done to an ANIMAL, those people would be in jail.

There’s a major disconnect and it must stop now, and it must stop with us.

My child is a person. He comes complete with a soul. An amazing, beautiful, sunshine-filled soul. So do all the other children of those amazing parents who adore their children. When we get them all together for playdates, there are some very marked differences in what you would see at playdates for neurotypical children. But it’s not what you’d think. Not at all. They play, laugh, go crazy, get shy, have melt-downs, as many “typical” children do. The difference is that there’s no teasing, no bullying, no exclusion. No whispering behind backs or sarcastic hurtful comments. No one cares what anyone is wearing. Many of them have a fascinating, literally wide-eyed innocence that most people lose by the time they’re 18 months. They delight in simple things, little praises, little accomplishments, with enthusiasm. Their emotions come through unfiltered. There’s no guile, no understanding of manipulation or social games. They just are, and take everyone else as they are.

What I ask for, on Jaden’s behalf, is that you do the same. See them for who they are. See them. Don’t let them be invisible anymore. 

Looking in closets and under beds

Photo from Wikimedia

I’ve been up all night again, with no intentions to stop anytime soon. Tonight I’m working on a very important article, an in depth look at Seclusion and Restraint in schools. I think it’s important anyway. I’ve been putting off finishing it for too long, because the subject is hard and the research is terrible. I don’t think I’ll be able to convey even a small percentage of it.

In a way, I feel that I’m doing this for Jaden. He will be homeschooled, but the discrimination and mentality that allows and drives these practices is alive and cancerous in our society. The unspoken idea that our children – these precious, innocent children – are subhuman. That somehow, having a developmental disability, a communication disorder, a physical handicap, makes you “a soulless empty shell” or “unable to contribute to society.”

You see these, and many, many more comments I’ve had to read already. Had to, because I’m not doing this for glory (who looks at the byline anyway?) or money (minimum wage looks downright wealthy compared to my pay-rate). Heck, some of the top advice about writing online for money I am breaking all over the place right now. “Write quick, short articles. Don’t spend time and research on them because that’s not financially worth your time.”

But that’s not why I’m writing. If it were I could plug my TV cable back in and write about Snooky, whoever that is. I’m writing because somewhere, a little child is going to wake up on Monday with a rock in his stomach, dreading the day. Somewhere a little girl is going to be forced into another broom closet, and not have the ability to tell her parents it’s happening. So I am. I will try to tell them, to look under their beds because sometimes there really is a boogey-man there. I know. One of them posted a comment on the video of Jeremy’s ordeal. Instead of the human response of being sick to her stomach as many of us were, she was angry and defensive. I believe that only a person who has done this would react that way.

And they think of our children as subhuman, soulless, non-contributors? Is that what qualifies as quality contributions to society? I’ll take instead the beautiful smiles, innocent eyes, the pure displays of unfiltered human emotions, that I see on the face of my son and in my friends’ children.

What kills me is that the wrongness of it needs an explanation. That I have to research experts to back up the obvious - that this is a horrible and barbaric thing to do to a child. ANY child. That it's archaic, that it's torture. That it "causes PTSD" and is proven to be ineffective should be something that shouldn't need to be told as evidence of it's being wrong. Being a human should tell you that.

Back to work. My least favorite time of the year is upon us. It’s Halloween and I have monsters to flush out.

Jaden's Journey

What's behind that fence? The dog park of course!

Searching through my (literally) thousands of photos tonight, I came across this picture. It was taken 3 years ago, almost exactly, when Jaden was little over 13 months old. We took Jaden to the park that day, to play in the grass and pull him in the wagon. Suddenly he became very focused. Walking was still new to him but he was determined. We were curious. Where did our little one want to go so badly? Slowly and with many falls along the way he climbed up the hill. That’s when we saw and heard what his keen senses had picked up all that long way. He’d made his way to the dog park! Later, I cut and pasted the photos that we took and dubbed it “Jaden’s Journey”.

Looking back, I believe it’s that fierce determination and fearlessness that has brought Jaden this far, and will bring him the rest of his journey, wherever he wants to go. He’s always had his very own ideas and “no” is a hard concept for him. Sure, that’s made parenting an interesting and sometimes scary challenge, but I love that about him. I’ve always thought “But it’s these determined children that are going to change the world!”

My baby boy told me yesterday that he was going to be an astronaut. Then he decided he was going to be “Buzz Lightyear.” Because he’s a hero.

I’ve no doubt that Jaden will find a way to go wherever he’s determined to go on his journey. I am also determined, and am working to clear away some of the obstacles in his path. Hate, prejudice, stereotypes, neuro-typical entitlement, pity.

It’s his journey but he doesn’t go alone.

Just Jaden

My son doesn’t like to be called a “big boy”. It’s not incentive for switching from diapers to underwear, or to try new foods in Feeding Therapy. It’s not praise for accomplishing something that was hard.

“I NOT a big boy!” he cries.

“What are you, then?”  I ask. “Are you a baby?”

“No! I’m Jaden. Just Jaden.”

Jaden likes to put his towel over his head and pretend that he’s a ghost, and I pretend that I’m scared. Then he pulls the towel off and says calmly “It’s just Jaden, Mommy.”

It took a lot of work just to get Jaden to answer the question “What’s your name?”  Now he says it proudly. Repeatedly. Hit himself in the chest with enough force to make me wince and leans forward. “I’m Jaden!”

He’s confident that that’s enough. If I’ve done one thing right out of the multitudes of screw-ups and wrong choices, it’s that I have managed to instill in him self-confidence. He’s bursting at the seams with it.

Tonight he painted a little wooden leaf I bought from Hobby Lobby. All I did was open 3 colors and handed him the paint brushes. I watched how much he’s progressed as he remembers – this time without my prompting – that he can dip the brush in for more paint when the brush runs dry. He turns the leaf over and paints the backside, too, little tongue sticking out of the corner of his mouth in his classic look of concentration. My praise and joy are genuine as I exalt “You’re such a little artist!”

“I’m Jaden,” he replied.

“You can be Jaden and an artist at the same time. ‘Artist’ means someone who likes to paint.”

His brows furrowed as he repeated my last sentence several times. I could almost feel the protest still rolling in his head. I don’t know how much he understood.

It’s been 14 months since I’ve moved into my own little spot of “my child has special needs” hell. 1 ½ months since diagnosis. We have our regular therapies and are working on integrating more therapies. There’s 2 different medical appointments scheduled with a promise of more. I constantly deal with all the nagging, clawing questions of the future. How will he function? Will he be able to take care of himself? Will he be happy?

Maybe on some level he understands the tension in me, it’s almost as if he knows I need the reminder.

“I’m just Jaden, Mommy.”

Yes you are, baby. I wouldn’t change that for the world.

Diagnosis: Autism

Autism Hope necklace from Etsy

1 in 70 boys are diagnosed with Autism. As of yesterday, Jaden is one of them.

To say that I was expecting it was true and not at all true. I thought that he was Autistic yet thought that I could be wrong, and that he was too difficult to diagnose, the lines too vague, and that as two times before we would walk out with no diagnosis and more questions than answers.

Diagnosis: Autism That’s what was written on the paper. The whole session is already fuzzy in my head, being recorded in my severely sleep-deprived state. To say that I expected that he had Autism did not make the words less of a blow. My stomach hurt like I’d physically been punched. I made it downstairs with Matt and Jaden, made it to the parking garage. Matt put Jaden in his carseat while I stood there slowly turning to stone, and cried. Matt came around and held me. “He’s still our little boy, he’s still our Jaden. He’s still our little ball of sunshine.” On the way home he told me he had expected it, but “Expecting it didn’t make it easier to hear.” The feelings are complex. Relief and grief. Relief because I suspected, or had come to know. Obviously something was wrong, something that didn’t fit or was more than the diagnosises that we’d been given. Grief because no matter what, it’s a terrible thing to have a diagnosis for. Because, as we told each other on the way home, suspecting wasn’t knowing and until then we had doubts. “In doubt there was hope,” Matt said. Exactly. Hope that we were wrong, that it was something else, something elusive that would be grown out of. But Autism. A lifelong diagnosis of struggle and confusion. Last night I finally slept. I don’t know how many days or weeks have passed since the last time I slept more than 4 hours in a night. No, not a night, that’s the problem. I could feel myself degrading yet the sleepiness eluded me. Just me wired up and unable to sleep until 7, 8, 9 in the morning. I felt practically useless at the assessment yesterday, my words staggering and me speaking what I knew were unclear, half sentences. But last night I slept.

beautiful apologies

Yesterday as I was looking for Jaden’s old videos on my computer, I came across a cute funny video of a baby that Matt had emailed to me years ago. I showed Jaden and he became a little obsessed with it, and today begged me to play it for him over and over. I left it on repeat because I had things to do upstairs.

Later, I was online typing when I realized my sentence was jumbled together. I looked down to see my spacebar missing. Yes, missing. This isn’t the first time Jaden had pried the keys from my laptop; it looks like the mouth of an old man with broken teeth. I had, however, thought that he’d matured enough not to do it again.

As I launched into the impossibly difficult task of re-applying key to board, I scolded him a little harshly in my frustration. I went on a bit more than I would have typically because I wanted him to understand me, and what he did wrong. It’s so hard to know if he’s “getting” anything I’m saying sometimes.  It so often seems like he doesn’t, that Matt and I still slip and talk about him or in front of him like he can’t understand us, as you would with a baby. Or a child with dismal language comprehension.

Jaden sat in his Daddy’s lap, silently watching me struggle with the space key for about a minute. Then he spoke up in a sweet, clear voice.

“I’m really sorry, Mommy,” he said meekly. “I didn’t mean to break the computer.”

I stopped cold, the anger melting from me. When I repeat or write some of the things that Jaden has said, it’s often like a translation of a foreign language. I know that’s exactly what he said or meant to say, but that’s not always how it comes out of his mouth. This time it was the sweet angelic voice of two full, complete and clear sentences.

Not knowing how to respond in my shock, I landed on about the 5^th thing I actually thought.

“Well, I don’t know how did such a great job of breaking it if you didn’t mean to.”

“I’m really sorry, Mommy,” he repeated contritely. “I didn’t mean to break the computer. I like the computer.”

My mind was still reeling so I did the only decent Mom thing I could do. “I forgive you, baby,’ I said, adding, “But I still can’t leave you alone with the computer again.” Then I hugged him.

Matt sat stoic but later (out of earshot) said “That was a beautiful apology.” I completely agree.

I don’t know what it’s like when other 2-weeks-from-being-a-4-yr-old’s speak. For me three sentences like that are a gift from Heaven that I would gladly trade a broken keyboard for. Not only the sweet clarity but the knowledge that he understood me.

Life with Jaden is like sliding doors in a revolving room. A room which I’m outside of, and he’s inside. Sometimes the door opens and I can see inside his beautiful mind. Then it shuts. I can’t say for sure, hopefully he will be able to answer one day, but I think that’s what it’s like for him also. Sometimes he understands us clearly, but too often it’s like being underwater. Or listening to life inside a closed room. It’s only my hypothesis, but it seems that way. So often he struggles to understand, repeating and questioning to clarify something we tell him, while his brows knit in confusion and frustration.

One thing I know; he is far more intelligent than his scores say. I would tear down those walls with my bloody fingernails if I could.

Red Cars

I thought Jaden said something about “…a pen and cars,” as he passed through the living room excitedly on his way upstairs. Typical busy-mom style I muttered “Uh huh. That’s nice honey.” Maybe he’s going to get some of his cars to play with. I wasn’t sure what a pen had to do with it, but he’s 3.

I glanced up as he rushed back downstairs and on towards the dining room, still beaming “Ah penned a cars, Mommy!”


“You wha--- ? Ohhhh nooo. Stop, wait!”

In a red-paint-covered hand he held a baby wipe. He smiled at me from a red-paint-streaked face. With his free hand he rubbed red paint into red-paint-matted hair, then tried to wipe it on red-paint-splotched pajamas.

“Wh-what happened?” I stuttered.

“I paint the cars, Mommy!” He rushed ahead to the dining room. I put down what I was working on and followed in dread. He was already busy with the wipe, smearing around a big puddle of red paint on the red-paint-puddled table until it threatened to spill onto the floor.

“Oh my God. Stop baby, stop! Mommy will clean that up.” He held up the wipe now red-paint-dripping.

“Look, Mommy! Look!” He said proudly, pointing to two car candles (leftover from last year’s birthday party), now covered thickly in red paint. They were almost indiscernible red bumps on the now red table.

“Oh. My. Goodness. And you painted the kitchen timer too.”

“I painted it, I painted the timer red!”

It was late, I was tired, and that was one big red mess to clean up. To make things worse, he had not used his own special child washable paints. Oh no. He had found Mommy’s paint. The kind that stains.

Yet as I looked at his beaming red face, all I could feel was pride. My little artistic boy! Baby Da Vinci. A year ago I couldn’t get him to touch paint, and now he’s literally throwing his whole self into it. Maybe it doesn’t bode well for my record as a disciplinarian, but I wasn’t about to scold him for something he was so darn happy about. (And for the record he had asked me to paint about 20 minutes prior and I told him no, it was too late, we’d paint tomorrow.) And maybe I’m wrong for it – in which case, um, I don’t care – but I also didn’t want to mar what could be a defining moment for him and turn it into a negative.

After I had dunked and scrubbed him vigorously and spent 15 minutes scrubbing and combing dried red paint flecks out of his hair with a comb, I did bring it up and told him it was wrong because Mommy had said "not tonight." But I’m not sure that either one of us cared at that moment. He had painted the cars red. He was happy.

Grief

Mid September last year was the turning point in my life. That’s when we learned what we had grown to suspect; all was not as it should be. That’s when we learned that my son is special needs. Through the course of a year we’ve been on excruciating waiting lists and had various assessments. Some gave answers and some just brought more questions. September was the beginning, and each assessment just brought on a new level as I was told it was worse than my optimism kept making it.

Jaden is my only child, I’ve had nothing to compare him to except himself. Sure there were some things in the books, or the occasional play dates, or the advanced cousin who you shouldn’t compare your own child to. Everyone develops at their own pace, boys develop language slower, every personality is different. These things I told myself, these things I read, these things our pediatrician assured us of.

A few months before he turned 3, those things stopped bringing me comfort. At play dates he wouldn’t play with the other children and obsessed over one toy or one idea until he completely melted down. Almost everyone else his age was potty trained, but I was a bad mommy because for some reason I couldn’t find the trick that made it work for him.

I remember one particular day playing in the backyard of a friend’s house with about 10 other families. As usual Jaden obsessed over the ride-on car, following the kids around the yard when it was their turn, jumping on the hood and crying. That day as I chatted with another parent who’s child was a year younger than Jaden (and who had just successfully potty trained), said child sat down with us and talked to me. Looked me in the face and spoke in calm and clear sentences that I understood. Whole sentences.

That day I went from code yellow to code orange. Something was wrong. In spite of everyone’s assurances, something was wrong. I wanted Jaden to talk to me like that. I wanted to understand what he was saying when he spoke, and not have the heartbreaking task of trying to decipher complete babble. I wanted to know what was going on behind those insightful looking eyes.

Then someone posted a developmental checklist on our group’s site. Maybe they did it randomly… maybe they were thinking of me. I’ve seen the milestones. But I read it again that day. And I showed my husband. We went from code orange to code red. Something was WRONG.

What exactly that something was it would take a year to understand. In the meantime grief was strung out and added to in small parts like adding beads to a necklace. Since we were so lacking in answers it was a hard thing to confront and get through all at once. Just little bits and weeping jags in the Target parking lot when I was alone.

I know my situation is worse than some and better than others. But all parents of special needs children share this commonality. There is always grief.

I want to clarify mine because often when I read what others have written, it doesn’t work for me. They don’t speak for me. But there it is over and over, until I heard it from a friend’s mouth who was not a SN mom, who was only saying it because she’d heard it somewhere else and thought she was comforting me.

“I’m sure you’re grieving over the loss of your hopes and dreams, and how you thought your life was going to be.”

No. Not exactly. It makes me cringe every time I hear it. Because, to me, it adds an extra layer on what it is that I am grieving for.

When Jaden was born something amazing happened to me. Previously I was a pretty egocentric person (as many are). I cared deeply about others, but my life was mainly about me. It was my story. The moment he was born the world shifted. It was his story now, I was his supporting cast, and that was ok. In fact it was great.

This isn’t about me. Theoretically, as parents we can all walk away at any time. We won’t, but we can. Jaden can’t do that. This is his life, this is who he is, and this is his struggles. I grieve for him. For how much harder he has and may always have to work at what others find easy. For the fact that there are a lot of heartless people in the world, and one day some of them might say things to him that dims the beautiful innocent light in his eyes. That even now when we go out people see a child who misbehaves, not a child who’s overwhelmed and can’t help it.

I grieve because I don’t know what his future is going to be, and I want him to have a good one. From the beginning my hopes were for him to find what it was he loved in life, and to be able to pursue it. Whatever that may be. Only through time and hard work now will we know if that’s possible. In that, one could argue that I grieve for the loss of my dreams. And I believe, or want to believe, that that’s what many parents mean when they say it. But to the outside world those words take on new meanings of pity and burdens.

My son is not a burden to me. For anyone to think that I grieve for the child I planned to have is missing the point of who he is. He is much more than I could have envisioned in my pre-child word. More beautiful, more quirky, more loving, more full of personality. I look at myself and my husband and I’m in awe that Jaden is much more than the sum of us. My husband aptly called him a ball of sunshine wrapped in a little boy. I tell my husband that we didn’t do anything so good in life that made us deserve him. He agrees.

Jaden looks at me with big blue eyes full of trust. He really believes that “Mommy can fix anything.” (He must considering some of the things he brings me to fix.) I can’t fix this for him. That’s why I grieve.