A beautiful wedding and tough conversations

My favorite time of day is Jaden’s bedtime. Not because he’s going to be asleep (though I won’t lie, sometimes that’s nice) but because that’s our time. Quite often we read for a while, on rare occasions we hook up the dvd player and watch a few minutes of a movie, and that’s our time to talk about anything that’s on his mind.

One of Jaden’s happiest breakthroughs is that a few months ago we began to have actual conversations. I’ve waited so long to hear what’s going through his head. He started really talking close to a year ago, right after we switched his speech therapy to Vanderbilt Bill Wilkerson. Because of this I’m in love with his speech therapist and think of her as part of our family. But real back and forth conversation took more time and work from all of his team of superheroes, as his receptive language is on a lower level than his expressive language. He struggles to understand us. The first time he told me a sentence in answer to “what happened today?” I had to act casual and turn so he wouldn’t see me tearing up. Way, way bigger than when he took his first steps.

So as soon as he was able, I used bedtime as a safe time to practice and talk to me about whatever was on his mind. It’s easier then, when his thoughts and eyes and body aren’t bouncing all over the room.

Tonight it was sad. I should have seen it coming maybe, when he asked me in the car “Why do people die?” I talked to him a little about it, trying to walk the line between being honest and not scaring him, while we put away groceries. I could tell he was done when he changed the subject himself and breathed a sigh of relief. I hope the birds and bees question waits for a while longer.

Laying in bed though the subject turned to two things I can’t fix for him; bad dreams then  the subject of our divorce. With tears he begged me again to “be married to daddy again,” with “’What a beautiful wedding,’ do you remember that in the song? ” he asked as he sang the lines from Panic! in the Disco’s  I write sins not tragedies. “’What a beautiful wedding,’ be like that. With the cake, and the flowers, and be married.”

I held him while he cried about it, I held him while he begged, I held him while he asked if daddy was going to marry someone else, and I held him while I told him again there wasn’t anything more I could do about any of it.

On second thought can we go back to why people die and the birds and the bees?

(I lol at how sweet that Jaden thinks the video is about a beautiful wedding…
Yes I gave it away - I’m a bad mom. We love our music!)

You’re just going to have to come see for yourself

“Ugh, I can’t explain it. You’re just going to have to come see for yourself.” Words we’ve said or had said to us several times in our lives when explanations fail and nothing but the experience will do.

This is how life should be lived. Not always balanced out in ledgers with pros and cons and risk management but with leaps of faith and “why not’s”.

I think about this now, after reading something once again that tells me that stress for a parent of a child with Autism stays at high alert pretty much forever. OK sure I’m 9 months post-diagnosis and still find myself saying “He wasn’t diagnosed very long ago,” for the mere fact that I feel like I’ve barely processed it yet. But is it too much to let me hope that it gets… easier? Even though I can’t see how right now?

I am however going through a divorce and recovering from various other not-directly-related-but-somewhat-related blows, so I may be a little sensitive to it all right now.

But I’m digressing slightly. Only slightly. The thing is, in times like this, I can’t help but think about my mindset when I decided to have a baby. I was 32, and life before then had been anything but calm and drama-free. I had in my early 20’s been told my chances of getting pregnant were basically nil. So I went through the whole process of grieving and accepting that I wasn’t going to have a child. Later I found I could get pregnant by the fact that I did, then miscarried. Then divorced. And went through a whole different but same process of accepting that being a mom wasn’t going to be in my future. Came to embrace it even. Being child-free meant being free to do other things.

So when I did meet, fall in love, and get married to someone who had a strong preference for having children, I was still on the fence about it. I’d say when it happened I was 60-40 and “If we’re going to do it we might as well do it now.”

It was the way things looked on paper that had me trepidatious. The costs and sacrifices being weighed with the ghost of an idea of loving someone so much they’d be worth the costs and sacrifices. I was never much a of coo-er over babies that didn’t belong to me somehow. I didn’t melt over other people’s children and wish I had one too. I just saw dirty diapers and snotty noses and screaming tantrums.

And these are the things I think of now. What I’d had on that “paper” was nothing – nothing – compared to the true costs and sacrifices. And if I would have known, I would have said NO. No way. Even had the rest been put on paper – his beautiful smiles, witty personality, what it feels like when he says “I love you, Mommy,” - I would have mistrusted myself for the sentimental twit I can be sometimes. No trustworthy message could have come with that price tag that I would have believed “and you’ll find it all worth it.”

I would have said “I think I’ll take option B and take my childless self to Hawaii now, which I may never see with option A.”

I would have never known the person I missed out on, the indescribable thing that goes beyond dirty diapers and snotty noses and germy race-car shopping carts. Beyond high needs and Autism and endless worry. Beyond every sacrifice I’ve made and thing I’ve lost that I would have never believed worth it.

I would have never known what I’d lost and that makes me thank God - THANK GOD that I didn’t know what I was sacrificing. 

The funny thing is, on paper many people would have said to me “If that’s the way you feel, you probably shouldn’t have children.” And it’s true that many probably shouldn’t, and do anyway. But you just never know sometimes what a person’s made of until they get there. Wherever there is for them.

I laugh because I’m only relating my own story and not trying to convince anyone to have children. Though I do think about those who have had abortions because they didn’t think they could pay the price demanded for a special needs child. The ones who did see it on paper. The ones who couldn’t imagine that the thing they sacrificed to preserve their own way of life would have, in just a few months, been the thing they would have gladly died for.

What would I say to someone who's on that fence? “The love, the joy, the anguish; it’s indescribable. It’s like- it’s like… You’re just going to have to come see for yourself. But it’s so worth it.”

On lungs and toes and becoming a donor

Yesterday I called my estranged husband and uttered words I never thought I’d say.

“Ok,” I said as if in urgent defeat. “I want to be a donor. If something happens to me and they can find anything usable, do it.”

I don’t know what they’d use. Not my lungs because I smoked for 17 years. I have heart palpitations and a weak valve, so I don’t know if that’s an option. A liver function test a few years ago showed me in excellent health, but 12 years of daily Tylenol to control the Fibromyalgia probably makes it less than prime.

“The only thing that I can think of that works right is my toes,” I mused. I don’t know. The point is if they can use something they can have it.

I won’t go into all the reasons that this is a big deal to me, and why I’ve been holding out. Most of them are crazy and illogical. But I will tell you what changed my mind.

My niece is 14 years old. When she was 12 months old, she was diagnosed with Cystic Fibrosis. A few weeks ago she went in for some tests to see if she should be considered for a lung transplant. The appointment was made months ago. Her doctor from Children's Hospital, I was told, said it was just a precaution. It had become too late for another little girl, Crissi’s friend, and she quickly became too sick to get the transplant. She died last year. So the doctor was feeling jumpy. I could understand that.

But they didn’t even make it through all of the “precautionary” tests. Crissi’s case was critical. Her lung function was at 12%, her blood oxygen dropped to 78. She was admitted to New Orleans’ Ochsner Hospital immediately and quickly put through the committee to get a lung transplant. As of last Thursday she’s approved and officially on the list.

Time is of the essence. Urgent. Her doctor says she’s standing on the edge of a cliff and once she starts falling, they can’t stop the fall. The rest of her body has to remain healthy enough to survive the surgery and ensuing struggle as it fights to reject the foreign organs and compromises with the drugs that will keep it from fighting them.

So I pray, yet as I do I hit walls. I know what we’re waiting for. We’re waiting for someone to die, someone who didn’t know they were going to die.

That’s hard to pray for.

Yet it happens every day, and we all live knowing in the back of our minds that one day it could be us. But we’re waiting for the “right” person to die. Someone who is a match. Someone who has decided that if they died, they want someone else to live on. To benefit from the tragedy. Someone who has been more unselfish than I and became an organ donor.

So if you’re reading this and you have your own crazy, illogical reasons for not being an organ donor, that’s ok I won’t push. Maybe you just haven’t got around to voicing your preference, or making one. Maybe one day you’ll find yourself in the horrible position of having to decide for someone else.

Crissi is a happy, witty, bravely vivacious 14 year old. She should have her whole life ahead of her. Only a lung transplant will give her a shot at that. Some wonderful caring person is going to give that to her. Someone whose life course wasn’t altered by the decision, yet they have the chance to alter someone else’s life completely. I’m so grateful to them already.

I can’t look…

I don’t mind questions about Jaden and Autism; in fact I welcome them. It doesn’t matter if the questions come from the utmost ignorance, as long as the asker’s heart is sincere in wanting to know the answers. It means they care, it means they want to learn.

I also started from the utmost ignorance; television dramas and stereotypes my only education that made me miss what should have been obvious.

One inevitable question, usually asked in halting, apologetic words, is “What about the future?”

This is the question that silences me.

That word has changed for me. Once upon a time to me “the future” invoked a picture of a road stretching out long before us with colorful shadows of might be and possibilities marking milestones.

Now the future is this week. I know what we’re doing this week. We’re going to school four days of the week and going to other therapies on two days. I have waffles and vegetarian chicken nuggets in the freezer, Dominos on speed dial, Lays chips and Chips Ahoy cookies for snack time, because that’s all Jaden will eat. The laundry is done. I’m ready for the future.

But I know that this isn’t what they’re asking. And I can’t say. I can’t even look.

Sometimes I glimpse up, usually unintentionally, and the shadows of “might be” have changed. Hopeful colorful ones are still there but they’re now joined and mixed with scary dark ones. Every time Jaden hits me when he’s mad, the dark ones loom in front of me. Every time he gets distressed and just can’t understand what I’m saying to him, or when I see his neuro-typical peers shun him and break his heart because he doesn’t understand. Or when he gets stressed and loses his words, or starts screaming at strangers to shut up.

I glimpse ugly futures every time I read a story about police mishandling or abusing a person with Autism, because they didn’t understand. Or when I hear about people forced into institutions, or becoming homeless on the streets, or victims of hate crimes, or perpetrators of crimes.

It makes my heart literally hurt, it makes my chest tight, and I look down. I keep my eyes to the ground at my feet.

I can’t look.

It’s not as if I’m ignoring the future. Almost all of my time, energy and money is going towards it. Diligence relaxed would ensure that the colorful shadows die. I’ve found that walking the road seems more like climbing cliffs. I heed the well-worn advice to not look up - or is it don’t look down? Just don’t look. But I’m climbing.

  

I’m reminded often of the scripture “Where there is no vision the people perish.” It is a bit like that. Hope for the future is an essential part of life, even if things don’t turn out as you envisioned them. And I do have a few hopes for myself. I know it’s necessary to be able to keep going. But like every good mother my future is wrapped up in my child’s, and I can't see it.  

I believe in magic...

I’m still at the Brown Center so much they’re probably tired of me by now. I’ve already worn out the average “new parent” jitters time. I don’t have the “jitters” anymore, but I like being there and watching how they do what they do.

When I see it, it all looks like play. But at home it translates into something magical. Jaden is having conversations with me. Actual conversations. There’s still language barriers and misused words, still some drive-me-up-the-wall echolalia. But the gap is closing.

Last year I would have sold everything l had to know what was going on inside of my son’s precious head. His intelligent eyes made it impossible not to believe that whatever he was trying to communicate to me in his completely alien babble was something interesting, poignant, even amazing. And I was missing it.

Harder than my own loss, it was obvious to him that he was unable to communicate. His struggles were a thing of great admiration and heartbreak. He never gave up. In the past year I and many other wonderful people have worked hard to help Jaden achieve what he wanted so badly. But I believe the crux of his success is founded in the fact that he is the most stubborn, strong-willed, ambitious, determined person I’ve ever known. While this makes for some interesting challenges in parenthood, I wouldn’t change him for the world.

But I digress. In truth one of my fears with sending Jaden to ABA based therapy was that I didn’t want them to change him. I didn’t want a little automaton who said and did the right things at the right times like a well-trained dog, and in that losing himself somewhere.

But what’s happening instead is a transformation. It’s like a static television that his therapy team is helping to fine-tune, or a rubiks cube that they gently match the colors in the right place. All the pieces of life were there for him, he just didn’t know how to make it come together in his head.

I watch, I listen, I learn, but to me it still looks like magic. 

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.