Friday, January 11, 2013
Friday, December 7, 2012
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.
- 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.
- 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.
Thursday, November 1, 2012
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.
Wednesday, October 31, 2012
Wednesday, October 24, 2012
Tuesday, October 23, 2012
|Photo by Seth Jacobson Photography|
Monday, October 22, 2012
The stories posted here are absolutely true, but I altered some potentially identifying details - including my own - for obvious reasons.
Tuesday, October 9, 2012
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.
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.
Monday, October 8, 2012
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?
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.
"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.
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
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.
Thursday, October 4, 2012
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,
Wednesday, October 3, 2012
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.
Tuesday, October 2, 2012
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.
Monday, October 1, 2012
Wednesday, September 26, 2012
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.
Monday, September 24, 2012
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.
Sunday, September 23, 2012
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.