Normal Is So Great

Sometimes I think it sucks to have an only child who's got Autism. I know people who already had the second child when they'd found out about the first. I also know people who were pregnant with the second when they got the news about the first. Hellooooo, anxiety!  I know people who already had one typically developing kid and started noticing differences with the second. I only have the one.... the one with Autism.

I want to have another baby. I have a few stipulations, though. It has to be cute, I don't want to gain too much weight (again), and there's just one other thing... it has to be normal. Yep, that's right. It's kind of a must for me. I've actually gone back and forth on this for a long time. I want, I don't want, I want, I don't want. Today, I've settled on I want, but I can't get that guarantee in writing and I just don't think I can risk going through this again. So, for now, I want but I'm not going there.

Of course everyone thinks it would be so great for me to have a baby. You know how I know? Because they tell me. ALL. THE. TIME. A baby would be happy and fun and exciting. It would be so great for [my daughter], her own build-in play therapy. I could have a little peace of mind knowing that someone else would be there to help care for her after I'm gone. It goes on. And on. 

But a few weeks ago, someone finally said something real to me. Like, really real. She said, "You should definitely have another baby. You should have the chance at having a normal child. Normal is so great."  She has 3 kids. Two of them are totally normal. The third has some stuff. "Special needs sucks. Normal is so awesome. You should definitely go for it. I really hope you take the chance to experience a normal, happy motherhood experience." So refreshing in a world where I've heard way too much about how I've been chosen for this, you-know-who doesn't give me more than I can handle, and how this is all happening to me for a reason. I think the normal moms even tiptoe around me so as not to brag too much about how great and well, normal, normal really is. 

Finally someone talks about how great normal is. And of course, it IS what I want. I'd love for my kid to have a sibling for all the right reasons; camaraderie, love, to take care of each other (and me), and yes, also for a little respite! That means I need a guarantee that I can have a normie. So, how do I get one of those??

Autism is a Family Dynamic

The numbers currently tell us that 1 in 88 people are on the autism spectrum.  Although this is the number used when organizations are raising funds for autism treatment and research, it is misleading because it doesn’t convey the fact that autism affects millions of people.  Perhaps that’s because we look at autism as a “condition” that affects only the individual when, in fact, autism creates a dynamic that affects the entire family. 

While therapeutic approaches and early intervention is helpful, it isn’t enough.  It isn’t enough because the supports that exist today are focused on treating the individual, rather than supporting the family unit.  In order to move forward and make a lasting impact for autistic individuals, we must create new systems of support that include their family members.

Parents of autistic children are not merely parents.  They’re caregivers, therapists, behavior specialists, and nurses.  An article published online at SleepReview, The Journal for Sleep Specialists, discussed the overwhelming number of autistic individuals with sleep disturbances.  This means that parents are also not sleeping, sometimes going months or even years without a full night of restful sleep because of their child’s inability to sleep.  It’s impossible to function in this capacity without there being mental and physical effects, for both child and parent.

Aggression is a common behavior for many autistics.  Lack of communication or low frustration tolerance can trigger a child to act out aggressively.  Parents must learn to manage meltdowns and outbursts that can include property destruction and physical aggression.  It is not uncommon for someone with autism to bite, hit, kick or punch a parent during a meltdown.  Siblings can also find themselves on the receiving end and have difficulty understanding why their sibling is striking out at them.  Often this leads a parent to turn to medications to help their child manage their moods, which often involves a lengthy trial-and-error period of adjustment, as referenced by the online article, Autism and Medication. 

Because behavior can be challenging and unpredictable with an autistic child, it often limits the ability of families to enjoy outings together.  It’s not uncommon to hear of families that avoided restaurant dining for a 2-3-year stretch because their child simply couldn’t handle being in a noisy, crowded restaurant.  Usually outings must be planned in advance, and kept as short as possible, to avoid a meltdown.  Grocery shopping can be torture for both the child and parent.

It is simply not responsible or reasonable to talk about autism, to speak about supports and services, and to leave the family out of the equation.  Not only is the family dynamic shaped by sleep disturbances, aggression, and unpredictability, there are usually challenges with communication, toileting, and feeding issues.  Family units need support.  They need respite, which is often limited or nonexistent.  In my case, we have not had one single hour of respite for over two years. 

While it is not the autistic person’s “fault” for the challenges that accompany autism, it is not the fault of the family that they are thrown into a physically, emotionally, and mentally demanding position, and often ill-equipped to meet the demands without some form of assistance.  Over time, the demands erode a parent’s ability to function.

That’s why it’s time to change the conversation about autism support.  It’s time we give a realistic picture of the challenges faced by autistics and their family members.  Autistic people need their families, and families need respite so they can sleep and recharge their drained batteries.  They need family therapy to address their feelings and thoughts about autism, without judging or shaming them.  We must prop up the entire family unit to keep them from going under, from being swept away by exhaustion and helplessness. 

It’s time to talk about services that support the reality of being an autistic family.

My Open Letter to Ann Coulter

Ann – this is regarding your tweet last night, your commentary on the last Presidential debate. This is regarding your incredibly thoughtless and unbelievably hurtful use of the word "retard."

Is this the state of political discourse in American politics today? In effort to insult the President, you opt for a word, “retard,” that denigrates millions of Americans with cognitive impairment (this is the “new” phrase for intelligent, compassionate people everywhere to describe those with mental challenges). You insulted those with mental illness, developmental delays, autism, Down Syndrome, and countless other syndromes, disabilities and disorders. You showed your ignorance – an astounding level of ignorance, really – lack of compassion and understanding, your willingness to stoop to any level to score political points regardless of whose you hurt, and your hateful heart.

Long has been my personal belief that those who proclaim themselves “Pro-Life” stop caring about those lives the minute they are breathing air. You certainly confirmed that opinion last night. In one breath you will talk about “taking the country back” and fixing America. And then you drop the “R” word. That is not a platform, or philosophy, that I support. Hate is NOT a talking point. Hurting millions of defenseless, bullied and special people – and those who love them – is not the optimal way to bring potential voters to your side.

Photo by Seth Jacobson Photography

I demand an apology. My son – my beautiful and loving, cognitively impaired, autistic, behaviorally and emotionally challenged son – deserves an apology. His life is going to be tough enough without people who have air time insulting him and discretely giving all those who believe and vote the way you do permission to use the “R” word as an insult. AMERICA deserves an apology for you taking discourse down this low. For comparing the President to a cognitively impaired person who needs to be spoken calmly and softly too, metaphorically patting him on the head.

I call for all politicians, talking heads, and pundits to denounce you and your hate. I call for all politicians to get their heads – and hearts – back in the game. This has gone far enough. This has gone low enough.

And, Ann, if you need help figuring out how to properly throw an insult, come find me. I’ll be happy to give you a lesson. 

-Kelly Hafer

Dear Abby: I'm Afraid My Child Will Kill Me

IMPORTANT NOTE: I do not believe autism (nor any neurological condition) correlates with violence or crime of any sort. Rachel Cohen-Rottenberg eloquently covered this implausibility back in July: Despicable: Joe Scarborough's Words on Autism and Mass Murder. Here's your takeaway: "There has never been any evidence what-so-fucking-ever that autism is associated with criminal violence." 

The stories posted here are absolutely true, but I altered some potentially identifying details  - including my own - for obvious reasons. 

I know this kid with the sweetest smile. He's gentle, friendly and mostly a "mama's boy."

Like many of us, he really hates being left out. Unfortunately, since he has a number of neurological challenges, this happens to him more frequently and overtly than other kids his age (let's say 9). So when he wants to play with a peer, but the peer avoids or ignores him...well, this little angel lashes out. Just last week, a play date ended abruptly when his peer had to proceed to the ER to have a telling, Frankenstein-ian gash stitched up. (This from a kid who can't even throw a ball to First.)

The mortified mom of the perpetrator - really, a lovely woman - relayed this story to me in tears, horrified and embarrassed. Remarkably, the victim's parent, a mutual friend, could not be more gracious and understanding, but the mom certainly isn't holding her breath for an invitation to the family's annual Halloween party. 

Since this wasn't the first incident, we've had this talk before. She's conscientious and smart, and already has been down the path of behavioral interventions and medications targeting mood, ADHD and impulsiveness. So the conversation moved to the next level.

Was he sorry?

"Well, he was crying, and said: 'I'm sorry, Mommy.'"

So you think that he regrets hurting his friend?

"I made him apologize, and write a card to the kid. I know he's sorry he broke a rule and is being punished. But, honestly, I'm really not sure if he actually feels bad about hurting the kid."

I started to compare this to my own son's aggressive behaviors. Similarly, they emerge only when he is "provoked" - like when he is over- or under-stimulated to begin with, and then misunderstood or denied something he really wants.

This other child (sort of) premeditated his move - targeting his prey. In contrast, my son lashes out at whomever or whatever is in reach. So while he might hit me or pull my hair, he also might instead overturn a table full of paint or even bite his own arm. Once the incident passes, he seems genuinely upset and confused about what happened.

Now another child I know appears to deliberately choose to lash out sometimes, because, theoretically, she "enjoys" the attention. (Probably that's better described as the sequence of events she initiated. Behavioral consultants have taught me that the best response is to not reward a child with any reaction, but YOU try that when a child has just tackled you with an uppercut.)

Still, I believe both of these children understand the human consequence of their actions. Sure, impulse control, sensory needs and all sort of other factors are in play here, but they are aware and concerned - at least after the fact - that someone has been hurt.

However, when we speculate if my friend's kid - the gasher - feels similar regret...I'm not so sure. Though I wonder, does it even matter if they regret the action or not if they can't control it in the heat of the moment?

Either way, we have some semi-violent kids on hand, and the honest truth is that it scares the hell out of us. I don't see them carrying out elaborate, premeditated murder plots, but - as they grow older and stronger - are they capable of losing control and knocking us in the head with a candlestick from Colonel Mustard's library? I don't doubt it for a second.

I've heard some shocking, first-hand stories of older kids - when in full meltdown mode - destroying TVs, breaking windows, and throwing rocks at people. The behaviors, while horrifying, always seem to have an "understandable" explanation and trigger (relevant to that child's condition and situation).

Consider TV's brilliant, serial killer character, Dexter, who claims to have a moral code guiding his murderous behaviors. Our children are different. Their behaviors are more rooted in "fight or flight" impulses; somehow, much less controlled. Still, my experience is with kids under 10. What happens when they turn into teenagers?

The truth is, I'm terrified. These children have loving families, wonderful teachers and therapists, and well-monitored medications and interventions. Like other children, they snuggle with us at night and bombard us with butterfly kisses.

Still, during that millisecond when my son's pupils narrow, and he giggles or bellows maniacally, morphing into a violent, little stranger, I feel helpless sorrow; perhaps some shame; but most shocking of all, the unsettling realization that my own child could kill me one day.

I've already forgiven him.

The A Word

Over two years ago, I wrote something I never let anyone see. I was embarrassed that I felt that way and hurting in a way none of my friends with "typical" kids could understand. I'm not proud of how I felt, but I FELT it. And I was ashamed of feeling that way. I am proud, however, that I don't feel that way any more, but I would like to think that hearing how I felt back then might make someone else feel less ashamed and more understood now. And I also like to think that hearing I feel differently now might give them hope.

I called it The "A" Word

---

There's this word. It might mean everything. Mostly it means nothing.

It's like the "just not right" of our generation of parents. Which is obviously a dumb phrase that's pretty much useless.

You think to yourself, that dreaded word doesn't mean OUR stuff -- I mean, we've got some stuff going on, don't get me wrong -- but that word isn't for OUR STUFF. Then you can't find any other words to describe your own specific bag of issues, problems, sensitivities, activity choices. So you try the word on for size.

The word feels like crap. AUTISM. It's a really lousy word.

However, it would seem it's the only word some of us get. There are some other labels that get you some of the way there: "on the spectrum," sensory processing, sensory integration, ADHD, shy. Gosh, those other labels sure feel a lot less itchy and ill-fitting. They work for a lot of other people and I sure hoped they would work for us.

Unfortunately, as the process (of survival, of diagnosis, of picking words and phrases to call things) continues, these words lack the oomph and the ability to convey the depth of the, ah...., the....um, situation.

There's this word: Autism. Sometimes I have to use it. But that doesn't mean I don't still hold back tears.

Uncertainty

This morning as I dropped my kids off at school I went into the classroom of J, my child with autism, to try to figure out the mystery of yesterday’s “missing” homework packet. His teacher was in the process of writing the daily schedule on the white board, and as I tried to find the homework in my limited time, J was completely transfixed by the process of the schedule being produced.

I looked in his desk, nothing. I looked in some folders there, nothing. I tried to get his attention to ask him. “J. Where did you put your homework? J. Look at me. Where is your homework?”

I know I’m not supposed to say “look at me,” and when the words came out of my mouth I immediately felt regret, but I needed his attention and that gave it to me, for about a nanosecond. He didn’t know where his homework was. I gave up the search. We walked over to his teacher to report the bad news (I had been emailing with his teacher about it yesterday so he was prepared for this) and his teacher asks him, too: “J. Where is yesterday’s homework?” J responds with “We have library on Wednesdays.”

At that moment J cared about nothing except the daily schedule. We were pushing him too much, I knew that. He needed time to absorb the schedule before he could focus on his homework, but the bell was about to ring and we didn’t have the time. We all stood there, and other kids stood there watching, as J managed to say “I don’t know where it is.” And that was the end of the discussion.

I left the room and, walking to my car, I encountered my other child, J’s brother, who is younger and NT. He was in a group of boys playing with some paper airplane and they were running and chasing it and laughing. He didn’t even notice me.

I walked away with a heavy heart. J is an amazing kid, and despite all the progress he’s made over the years, he is very much autistic. He will always be very much autistic. He will always be different, he will always be unusual, he will always stand out, in some way. As much as I try to prepare him for the world I know that I won’t be able to do that completely. He will inevitably face heartache and heart break and whatever other kind of pain the world is waiting with.

I want to grab him up and run home with him so I can keep him safe from what’s out there, just like when he was a baby. I want to put my arms around him and keep everybody else out; keep them from hurting him. I want him to be happy, and the uncertainty of it all sometimes is too much for me to handle. Am I doing enough for him? Am I doing the right things? I don’t know; I have no way of knowing. I can only hope that he will be able to make his way and that I will have given him enough tools to be equipped for the task.

I feel physical pain in my chest just writing these words. I don’t even care where his homework is.

Lost Opportunities

I went shopping today.  In our divide and conquer marriage, my wife stayed home with our youngest while I took our oldest to dance class, then went grocery shopping.

There was a girl in a wheelchair.  I'm not sure how old she was.  She looked maybe 12. . . maybe 14.  Probably younger though.  She wasn't paralyzed, her feet would periodically explore out from the wheelchair.  The girl's grandmother was pushing her as her mother scouted ahead with the grocery cart.  These details became clear to me over the course of our aisle to aisle meetings.

I passed them in the coffee aisle, them going one way, me going the other.  The girl's hand snaked out and grabbed my cart as I passed, and the mother apologetically unclasped her daughter's hand from the cart.  I smiled and told them it was okay, but I really wanted to do more.  The girl looked through me, around me, not at me.  She looked around me not in a way that spoke of avoidance of eye contact, but of vacancy.  Her lips were wet with what was either drool or something she'd been fed.

I couldn't help but compose my own back story for them and I found myself inexplicably near tears a couple times, shaking my head in disgust at my emotional fancy:  Divorced mother, relying on her mom to help with her daughter as she runs errands, I thought.  And I don't know if any of that is true, but that was the story that popped into my head.

I don't know too many faces of cognitive impairment.  I don't really know anything but my daughter's autism.    I just imagined their long road ahead, and how there will most likely never be a time when that little girl is able to shop for herself.  And maybe she's able to type or will one day be able to speak, I don't know.  I just wanted to do something nice for them, and I couldn't think of anything.  I wanted to get in line at checkout and offer them my place.  I wanted to make small talk with her daughter and tell her that "MY daughter likes to grab onto things too, and she's almost quick as YOU are!"  I know that their shopping trip wasn't "normal" by most people's standards, but I wanted to MAKE it normal.  I wanted to MAKE it easy like sometimes I hope someone will try to make it easy for us when our daughter is struggling.  I wanted to give her a card and say, "People like you, with kids like yours, are writing stories about it, and it makes things feel better sometimes when you think nobody out there but you can possibly understand how hard it can sometimes be."

But she was gone before I could think of something more to say.  She gently and (it seemed) lovingly, removed her daughter's fingers from my cart, apologized and moved away.  When I got to checkout, they were already in line.  I looked for them after I checked out, but they were gone.

And it felt like an opportunity lost.