What Does Little Suzie Want For Christmas?

Let's see. A bushel of pine straw? Dental floss? 200 blue matchbox cars all in a row? Honestly, I have no clue.

She's non-verbal, and her interests are...eccentric (at best). I used to get really sad when someone asked me this question. Now, with a few more years of autism parenting under my belt, I generously proffer these guidelines.

Here's what Little Suzie wants for Christmas:

• Nothing that you will find appropriate, typical or sensible. 
• Probably something different than what she wanted yesterday.
• If another kid her age wants it...try again. She doesn't.
• Something that is not sold in ToysRUs.
• If she unwraps it just enough to play with the curling ribbon and sleeps with it, consider it a success.

Please also adhere to the house rules:

• Give nothing with more than 3 parts because:
• • She will lose interest if it requires time to build.
  • She will lose or break a part and scream for a couple of weeks.
  • She will be annoyed that it has an even number of parts. Or an odd number of parts. (We'll just have to wait and see.)
• Check the age recommendation carefully:
• • Yes she's way past 3, but if it specifies that it is not meant for children under 3, we don't want it. She probably will eat it for lunch.
  • If it's intended for children her age, it's likely going to frustrate her.
  • So something appropriate for kids between ages 3 and 7 (but over 70 pounds) should be about right. 

Hope that helps. 

Of course we want to make her happy. Don't we all remember the joy of unwrapping the Barbie Dreamhouse or Matchbox Car Track we'd been eyeballing for months? (The kids in the commercials were having soooo much fun!). We want to see the same excitement and twinkle in her eye as she anticipates and opens the gift of her dreams.

Unfortunately, while other children might present you with lists so long you'll regret asking the question, some children with special needs (and their parents) cannot give you an easy answer. And, if a request does come, it may not match your own, preconceived holiday vision.

Can we make a pact to NOT be ashamed to gift that box of dental floss if that's really, truly what makes her happiest? I mean, if it makes her feel just as loved, appreciated and special as the day you received your very own Barbie Dreamhouse, what's the harm? Isn't that the point?

Even better, we won't have to stand in line or battle any Black Friday shopping savages to attain it!
------------------------------------------

If dental floss isn't your game, here are some related posts and shopping ideas that might also help your gift quest.  Happy holidays!

• If the kid has an iAnything, you can't go wrong with an iTunes gift card. (And if they don't already have one...!)
• Recommended reading: Finding the Right Gift / Childswork
• A nice compilation from The Friendship Circle: 11 Online Toy Stores for Children With Special Needs. 
• Toys That Don't Suck (full disclosure - my Amazon store site. It's lame, but check it out anyway, k?)
• http://toysforautism.com/ (That is, if you want to go all educational and therapy-ish. There are a multitudes of similar sellers out there, so shop around if you are going that route.)
• ToysRUs has a much glorified Differently Abled Toy Guide...although I'm not sure this actually is updated anymore.

That's enough. You can Google too. 

If you have the perfect gift idea, do let us know! Also, what's the oddest gift you've given that brought the biggest smiles? Please share. It will make those of us pricing out bales of hay feel MUCH better.

By the way, I also blog semi-regularly over at My Whac-A-Mole Life. We're open 24/7. Stop by anytime.

Lucky

Wednesday the school held its annual Halloween parade; the entire school, about 450 kids, teachers, staff and parents gather on the yard for dancing and celebrating in costumes. This is our 6th year at the school and I've been to every one, and during every one the crowd and the noise and the celebrating is too much for my son. He has spent the time either lying on the concrete, legs outstretched, with his head in my lap, or he escapes to the area on the yard where there are no other people. He's only allowed to "escape" if there is another adult with him, and in years past there hasn't always been somebody. I've been there every time, but I've been stuck to my other (NT) child, who would cling to me and cry and not let me leave his side.

This year, my younger child was fine with being with his friends and his class, so I was able to take my older son to the empty area on the yard, where it was quiet and empty and still. I sat there on the bench and watched him run back and forth, flap his hands, jump up and down and whisper to himself, and I was struck by something I'd never felt before: Pride.

In years past, I may have been upset to be separated from the crowd and all the fun, or I may have felt uncomfortable by having singled myself out, forced to the outsides because my autistic child didn't like the crowd and the noise. I may have felt sorry for myself because autism was forcing me to be an outsider when, by nature, I am not an outsider. This year was different, though. I was glad to be outside from the crowd, because it was what my son wanted. I'm sure he wasn't the only kid there who didn't like the crowd, but he was the only kid who was able to escape from it.

I was proud to be the only parent there who had a child who stimmed.  I felt like I was part of a special group that's not like the rest of them; a better group, a more awesome group. We're lucky, because we've got autism. I'm sorry the rest of you don't.

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.

Guilt

 

So, my humanoid life partner and I have been trying to create another human larvae for a while now.  We've tried this, method and that until I finally threw up my hands and shouted FUCK IT! and sold all the baby stuff. Ok, I kept the pack-n-play and one tub of sentimental stuff--BUT THAT'S IT!  I stopped taking my temps, barely pay attention to my calendar, and ignore all my body symptoms because my body is a big fat liar-head.  SCREW YOU HORMONES!

I'm over 40 (BARELY!  my vanity screams)   This shouldn't come as a surprise.  It is completely natural for the baby-making machinery to slow its gears and grind to a halt.  We're not on the official halt yet, and I'm too chickenshit to get my blood drawn to find out if it's even started.  But I think I've accepted that this sack of bones and water prolly ain't squirting out another critter.  And I'd love to say I'm ok with that.  But I'm not--and I'm lying everytime I tell people that.

Infertility is like...well...it's like Mr Rochester's crazy wife in the attic.  As much as I can PRETEND its not an issue, occasionally it comes down and tries to set fires and terrorize the help.

(and if you don't get that literary reference, well, your teachers obviously did not appreciate the canon.)

I've got a kid, people remind me.  A kid that needs my attention.  Most of the time.  He is pretty high functioning, and I don't bitch about our issues much anymore, only because I feel like a whiny little white girl in the face of Autism parents with MUCH bigger issues.  I'm not dealing with meds, or vicious cycles, or non-verbal or even potty issues anymore. He's just a kid in special day with his own set of quirks, that we accept or work on, depending. I've got a husband at home who is actively involved.  I've got a college education and a smart mouth that make IEPs a little less daunting.   My day is a fucking CAKE-WALK in comparison to my friends--and I get that.

But...

There is that part of me that wants to have another kid, that, maybe, doesn't have these issues.  And every time I think that, I feel like my parenting license should just be fucking REVOKED.  That my kid deserves a mother 127% better than me for even thinking such a horrid thing.  And I think it must be karma shutting down the fallopian highway because I obviously don't deserve to have another kid if I can't fucking appreciate the one purely awesome kid I DO have.

Oh, Bertha--why do you torment me so?

As I write this I'm on day 24 of my cycle--because I still keep track, for all my nonchalance and disinterest.  And all my PMS symptoms mimic pregnancy something fierce.  And there is that teeny-tiny voice from who-ville whispering "maybe?"  And I wish with everything I have that I could just  boil that voice in Beezle-nut oil and be done with it.

But I can't.  And next month?  I do this dance all over again.

Who needs a rabid right wing?  I've got my own war on women right here.

The Short Bus - That Parent

I dropped my daughter off at daycare and made polite conversation with the director.  She was an older nun, Sister K.  She was no nonsense, a little mannish, a little. . . hard.  Mothers tended to dislike her.  Fathers tended to get along fine with her.  

I mentioned to her that my wife would be following the bus when it picked my daughter up from daycare and trailing it to her special preschool.  I said it conversationally; just between us guys.  She looked vaguely affronted and said, "It's illegal to follow a school bus.  She can't do that!"

I shrugged my shoulders and said, "It's not like we're going to make a habit of it.  She just wants to see that she gets to school safely, and understands the route."

"She can't do that," she repeated.  

Annoyed, I defended, "It's hard that first day leaving your child in the care of a complete stranger and just watching them drive off, you know?"  I should have known better.  This is why women didn't relate as well to Sister K.  She didn't know.  

Men are embarrassed of their feelings, and can be bullied by this, accepting things we might not because we refuse to let our emotions master us, the way we imagine they master women.  

"We haven't lost a child yet," she said meaningfully, a "look, what are you all panicked about" sort of statement.

Suddenly I was annoyed.  "Yeah?  Well I don't want my kid to be your first." I tried to reply evenly, but I suspect it came out clipped and terse.

"The drivers of these buses undergo extensive background checks before they're cleared to drive school buses."  

I raised an eyebrow in disdain, but didn't say anything else. 
-----


My daughter is practically non-verbal.  She says words, even has a decent vocabulary, but yes/no are used interchangeably  and she only answers direct questions sporadically.  She is, for all intents and purposes, "non-verbal".

"Are there any kids on the bus who ARE verbal," I asked the pre-school teacher?  

"There's one."

-----

One day the bus driver gave her candy in her backpack.  It seemed weird.  Was he this nice with all the kids?  I shrugged it off.  
-----

I met her bus driver, M, a few months into the route.  I tried not to let his physical appearance bother me.  Matted hair and patchwork beard framed an over-wide face.  Coke bottle glasses magnified eyes that were slightly off-kilter.  He was missing several teeth.  It shouldn't matter what he looks like.  He seems to genuinely like my daughter.

He offers to babysit her if my wife and I ever need someone to watch her while we're away.
-----

The daycare teacher approaches my wife one day and says, M is counting down the days until your daughter's birthday.

"Really?"

"Yeah."

"Does that seem weird?  It sort of seems weird to me."

"Yeah, it is sort of weird."
-----

Nobody tells us the day of the incident.  There's paperwork to fill out.  Questions to ask.  The parents are to be notified after the preschool understands better what happened.  We hear about it from and aide.  The special ed teacher isn't there that day.  We ask for more information, but everyone is gone.  Nobody is in town, but it's really important that we figure out what the fuck just happened so we call the teacher's personal cell phone number.  She doesn't answer.

My wife is going to the hospital the next day for a treatment.  We can't stop thinking about "it" even though we really don't know what "it" is beyond this:  M has been reported to the bus company by the preschool because he was sitting with one of the students on the bus when the teachers came out of the school to gather them and escort them inside. 

"Which student," we ask, but we already know the answer.

"Your daughter."
-----

In the absence of any kind of feedback, we talk to a friend, a police detective.  We give him a name, we explain the situation.  He says to us, "everything you just described is a red flag for a sexual predator except one.  Usually predators don't engage the parents.  They try to distance themselves from the parents."

We don't feel any better.  He says he'll look into it.  We feel a little better.
-----

While my wife is being treated in the hospital the special ed teacher calls me.  This isn't the first time they've complained about M leaving his seat.  

"He is not to get up and go back with the children under any circumstances," she tells us.  He has been given notice.  This doesn't make me feel any better.  We receive more information.  It's not enough.  He was sitting with her.  How long?  We know how long the bus route is.  He's been getting to the school early.  The preschool has complained that he's arriving too early and the children are sitting out on the bus until they show up.  The daycare tells us when the bus picked her up.  My wife knows the route, and is satisfied that they can't have been on the bus in parking lot for more than a few minutes.  The preschool agrees.  How long was he sitting with my daughter?

I'm intensely concerned.  Very worried.  Heartsick.  But also guilty.  What if he's just a nice guy who happens to love children.  I can't get his appearance out of my mind.  I feel guilty again.  He can't help how he looks.  He can't help that he "looks like a pedophile".  

Fuck him, I decide.  We complain to the bus company.  He's moved off the route.  The daycare and preschool are instructed that under no circumstance is our daughter to get on any bus he is driving.  I feel guilty all over again, but I cannot fully satisfy myself that this man belongs on a bus full of non-verbal children, least of all my daughter.  An aide is assigned to ride the bus.  Why wasn't this done to begin with?
-----

I don't think anything happened.  I don't know, but I don't think so.  
-----

I read the headlines.  I hear the stories.  This shit happens all the time.  Whether it's the driver, or the aide, or the kids on the bus. . . this shit happens way more than should ever be allowed in the sight of god and man.

All you have to do is type "autistic abuse on bus" and watch your monitor fill up with a demon's resume of reprehensible shit that human beings inflict on other human beings because "they can" and don't think they'll get caught.
-----

From "Sexual Assault Statistics"


Among developmentally disabled adults, as many as 83% of the females and 32% of the males are the 
victims of sexual assault.


Women with disabilities are raped and abused at a rate at least twice that of the general population of 
women.

From "64 Facts about Child Sexual Abuse":

Child molesters come from all backgrounds and social classes. However, most molesters (1) are male, (2) work in an environment surrounded by children, (3) befriend the parents first and then gain the child’s trust, and (4) attend events such as sports, camping, and video arcades

In the United States, approximately 1 out of every 4 girls and 1 out of every 6 boys is sexually abused.

From "Statistics: Child Sexual Abuse"

Children with disabilities are 4 to 10 times more vulnerable to sexual abuse than their non-disabled peers.
-----

Men are quick to discount.  At the risk of speaking for my gender, I know I am quick to discount.  Arguments appealing to the absurdity of the situation take root in my mind and prickle my pride. . . I don't want to be made a fool of.  Everyone ELSE is trusting this. . . why am *I* "that parent".  Do I really want to be "that parent?"

For anyone who is quick to discount the possibility that something bad could happen, read the statistics above.  It's almost a fucking guarantee.

For anyone who nods apologetically to Sister K at the absurdity of his/her own paranoia. . . read the statistics above.

If you ever feel embarrassed or silly or. . . just exhausted at the idea of "being that parent". . . read the statistics above.

Those are just snippets.
-----


I caught so much hell from the district getting a camera on the bus
(after the fact).  You feel stupid fighting so hard.  Everyone is so
reasonable.  Why can't I just be reasonable like everyone else?  I
guess experience. . . and statistics.


Get an aide.  Get a camera.  Be a pain in the ass.  Shame yourself with your paranoia.  Chip away at the statistics.  Limit your child's risk.

BE.  THAT.  PARENT.

Forgiveness: An Open Letter to My Mother

Mom -

How I wish you would listen. How I wish you would try. How I wish you would care more than you show.

I know that a lot of things in your life were not easy and that’s because of me. I was born when you were just a child. Sure you were just out of high school, but a child nonetheless. You decided to marry far too young to escape something – something that seemed to stifle you but that I’ll never understand. You were a model mother for years to the outside world, even though we walked on eggshells around you for fear of your wrath.

I forgive you for that.

Then came the day that you rediscovered him – a long lost love - and you wanted nothing to do with the life you had before. You wanted to be with him and not with the person with whom you made both a child and a commitment. You kept me away from my father – the person I was closest to – because of your own desires.

I forgive you for that.

Your life became more and more about you. I grew up with the assistance of other family members who took me under my wing. You were emotionally abusive to me, threatening to take away love and affection if I did not do as you said or take your side. You told me that I should be grateful that you did not turn me out – that you provided me a roof and food – despite the fact that it was what parents do. All I wanted was your love. Instead, I felt fear.

I forgive you for that.

When my son was diagnosed with autism, I needed the support of family. Instead, you berated me – made me feel like I had betrayed you – because I needed everyone, including my father. I needed you to understand what my world had become and what I needed to feel whole. You couldn’t get past your own feelings to see what I – your daughter – needed. You still can’t.

For what you do to me, I forgive you for that.

However, you then seemed to write my boy off. I didn’t suffer from having the family that didn’t believe he was autistic – everyone saw it – but I suffered a pain far greater than a lack of validation. Instead of putting forth the effort, instead of trying, instead of treating him like a person, you simply seemed to think that you wouldn’t have any relationship with him. He has been ignored and cast to the side.

I’ve begged you to try. I’ve begged you to see the absolutely wonderful person that he is. I’ve tried to educate you so that you would be willing to make simple accommodations for him. I’ve tried to teach you about autism so that you wouldn’t take it so personally when we can’t take him out to dinner or when he has a meltdown.

Instead, what I’ve been met with is accusations that I haven’t done a good enough job teaching you what to do. I’ve been accused of using my son’s disabilities as excuses. Instead of listening, watching, and following the model that I set for you, you look to blame someone else. You allow my siblings to do the same. You’ve made me feel like we are somewhat less because of the world – the autism community – that we find ourselves residing within.

I’m not sure I am strong enough to forgive you this time.

You see, this is no longer about me. It’s about him. He deserves a circle of support and of people who will genuinely try to include him in their lives. For lack of a better word, I am pissed as hell at the way you treat him with a general sense of neglect. I am pissed as hell that you allow and defend the way that my siblings do so.

The truth is, I want so badly to forgive you – for everything. You are my mother and I want nothing more than your approval and affection for both my beautiful little boy and me. I can’t understand why that is so hard for you to give.

So, I’ll ask again – please see the beautiful, delightful child before you. Instead of seeing a relationship that will never be what you imagined, see the possibilities. See that he is worth the extra effort – because he is – and take the time and energy to get down on his level. Sit with him. Be with him when he seems self-absorbed and closed off. You see me do it. Make yourself a part of his world.

I’m not going to ask you to do it for me, because you’ve never been willing to do that. Instead, do it for him. Ultimately, if you don’t, you are the one who is missing out on the absolutely wonderful and inspirational person he is.

You’ll also miss out on who I have become. You’ll miss out on the growth that I’ve made, the voice I’ve gained, and the strength I’ve found all in the name of my boy.

I hope that, someday, you’ll see it. I hope that you’ll see what you’ve missed in the absolute pursuit of your own desires and misguided ideas. I hope that you’ll try to be a part of his world sooner rather than later. I hope you’ll try. I also hope that you’ll end up being the mom that I’ve wanted you to be.

With all the love in the world regardless of what you give back,

Your Daughter

Judgment

As parents of autistic kids, we’re used to being judged. But you know what? I’m tired.

Tired of people who know nothing about my life telling me that I’m doing it wrong.
Assuming that they know what I’m going through.
Telling me which words to use.
Trying to sell me on a therapy or cure they just read about.
Thinking they know what’s best for my kids.
Making me feel excluded from a club.

No, I’m not talking about parents of neurotypical kids. I’m talking about the online autism parenting community.

Sure there’s nothing like the support that comes from discovering that other people are going through the same stuff that you are. To find friends and comfort and advice from someone who could have stolen the words right out of your mouth. But there’s more to a community than sharing cartoons of retro housewives with pithy quotes in a cool font.

A community should be a place where people feel safe.

Safe to express opinions.
Safe to share experiences.
Safe to make their own choices.
Safe to change their minds.
Safe to rant on a bad day.
Safe to enjoy a good day.

This community doesn’t feel safe, and some days I want out.

There’s a not-so-silent war raging across autism blogs and social media, and it has nothing to do with funding or awareness. Parents who speak their mind are being attacked no matter what their stance - those who admit that autism sucks are ‘insensitive’, those who embrace acceptance are ‘unrealistic’. Low-functioning vs high-functioning. Autistic vs person-first. Jenny McCarthy vs science. There's no room for disagreement, no spectrum of opinion allowed. Whether you contribute via your own blog or comment on someone else’s, it’s becoming almost impossible to speak without upsetting someone, no matter how benign the topic.

For a group who seek tolerance... why are we so quick to turn on each other?

Yes we’re all emotionally raw, frustrated and tired as hell. Advocacy is our life and that probably makes us a naturally opinionated bunch. But why can’t we seem to agree to disagree?

Because somewhere along the way the focus seems to have switched from providing mutual support to sending a unified message. There’s pressure to share a single view of autism with the world, and in the process our opinions are not ours to own - they belong to Autism and therefore must represent everybody. We’re not allowed to describe what life’s like for us, at the point where we’re at or where our kids are on the spectrum, without others jumping up and down and yelling “you don’t speak for me!”

So instead of a strong and supportive community we’re fighting amongst ourselves to be heard. To become the one true voice that we never needed in the first place, because there is no unified experience of autism.

I want to be part of a community that feels safe. I want to have intelligent conversations about what works and what doesn’t and why it’s hard and how not to go insane without having to wade through political bullshit or feel like I’m stepping on anyone’s toes.

I don’t want to feel afraid to ask for help from the only people who can give it to me.

I want to want to be here.

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

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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.

View from the Sidelines

I had an opportunity to sit among the “normie” moms this week. It was an eye opening experience, to say the least. It reminded me of the bullet I dodged by having special needs kids. Confused? Let me explain:

“Normie” moms are in competition with each other. Over everything. The number of kids they have, the number of sports each child plays – and how many of them are in the All-Stars League or on the “A” Team, the number of games to make on a weekend, and the number of miles they put on their mini-van each week.

“Normie” moms want to let you know how tired they are. How busy their lives are dragging their brood of various age and sex to a myriad of extra-curricular activities. They do violin, soccer and a different travel league soccer, Pop Warner football, cheer leading  swim, gymnastics, oh my. They have home games, away games, travel games, tournies, and play-off games. But, you know, they are only one person. They can’t possibly attend every practice or game for every child. They must depend on other over achieving, helicopter moms to carpool. They depend on others to help them with their kids. They help the others with their kids, too; of course, that just adds to their horrible mommy burden that they gleefully share and then try to one-up with the other moms who care.

My first thought upon hearing the latest round of Busiest, Sportiest Mom Competition was, “You know that shit is optional, right?” 

I mean, the odds that Johnny will go on to play quarterback at their alma mater are infinitesimal. Ditto with Suzy the Olympic gymnast hopeful. Guess what? It’s much more likely that this is what is going to happen: a career-ending ACL tear for Johnny at the tender age of 12 and amenorrhea, body image issues and a broken collarbone for Suzy. 

What no one seems to be talking about is homework. No one talks about staying up all night and helping Benji put together a physics project. No one talks about taking Amy to volunteer in a homeless shelter. And no one is talking about eating dinner together as a family. It’s rushing here and there, eating in the car, not having time to talk to or enjoy their kids – except the time spent zooming to and fro in the mom mobile. And that makes me really sad.

These parents have “normie” kids. They aren't dealing with SIBs, communication disorders, finding alternative methods of assistive technology, or cognitive impairment. They aren't struggling and fighting for their kids to attain the most basic of victories, like potty training at age 7. They go to school and volunteer for the PTO/A – and their children are feted. We have knock down, drag out fights during IEP meetings, and our kids are segregated from the rest of the school.

It has occurred to me that this is just a green-eyed jealousy thing. But I really don’t think so. When my kids aren't melting, struggling to communicate their basic needs, or slapping me, I really enjoy spending time with them. I enjoy listening to them. Talking to them and hearing their response. I love our home OT program – Tickle Time. I love it when they throw their spindly little arms around me and squeeze with all their might.

I think that the “Normie” moms and their over-scheduled, Ann Taylor wearing selves should be jealous of ME. For the victories that we have fought so hard for – those that have come so easy to their families. Victory over speech and gross motor delays, emotional disturbance and behavioral interventions.

It’s all a matter of perspective. And, most of the time, I like the view from my seat on the sidelines.

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.

Sex

I admit, I was a bit of a freak when my husband and I were dating. I remember one time we went out to a place to shoot a few games of pool, and have a few beers. When we left, we walked to our car, which was in a dark corner of the parking lot. We were young and in love, and a little buzzed, and I was wearing a short skirt. To our knowledge, no one saw him lean me up against the car, pull my skirt up, and test out my birth control method.

It’s not like there was a slow, steady decline in our sex life once we had our son. In truth, it came to a screeching halt, as we adjusted to the demands of parenthood.

Okay. As I adjusted.

Now I’m not going to say that women have it harder than men. But what I will say is this: women make it their responsibility to be aware of every minute detail of their child’s needs, from when it’s time to graduate to nipples for bottles that have larger openings, to which brand of diaper is better for large amounts of pee, versus which ones hold explosive diarrhea (because there doesn’t seem to be one diaper that can do both), to when it’s time to clip the nails of little fingers and toes.

But beyond that, our baby was needy. And he didn’t nap well. And as he grew, he still required an inordinate amount of attention.

Soon, the diagnosis came. Our son was on the spectrum.

The daily demands exploded and soon included: therapy appointments, IEP meetings, autism and behavior research, specialized toys and devices to meet sensory needs, medications, and diet. There was a lack of play dates and opportunities for both myself and my son to socialize, and there was constant, frenetic and, sometimes, aggressive attention and behavior to navigate.

After enough time had passed, I got to a point where I stopped missing sex. It became one more thing on my never ending to-do list, and kept getting bumped down by other, more important, things. We didn’t have babysitters lining up, so we, individually and as a couple, become less important.

There was no “we” anymore. There was no “him” or “I” or “us”, there was only autism and its demands.

But you can’t live in that place forever. As I watch my son grow, and realize that someday he will be grown and out of the house, either independently or with support, I know that there will be nothing left but a gaping hole and a person I don’t recognize anymore.

I’ve made a decision to reclaim some of what I’ve let slip away, to carve out some time for us in the evening, when and if we get this child to sleep for the night. We might not be the same people we were that night long ago, shooting pool and laughing, living, like there was only this moment. We’re heavier and more tired, worn down. But “we”, “us” is still in there.

That short skirt doesn’t fit anymore. And there’s no sitter to relieve us so we can go out and shoot pool. But I have to believe the freak in me can be creative with what we’ve got.

I can’t let autism’s demands break “us” apart. It will not define my family anymore.

So please, no phone calls or text messages after 9pm. “We’” will be busy.

Look at this couple.

I bet they're FREAKS.

I know nothing about the site it came from.

I just like the picture.

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.