the cost of compliance is unreasonable


IMG_4457Today I sat in my dentist’s reception area waiting for my appointment.  This time my panic had nothing to do with my fear of all things dentist.

I had just read this blog entry

It is certainly not for the faint of heart.  My husband wept after reading it.

This woman articulated so many of my feelings about Evie’s autism–giving them credibility and reason coming from a woman who has autism.

Last year at school, Evie was “flopping” often.  Flopping meaning sinking to the floor.  Some of her special educators felt like it was a behavior and by allowing it to continue, they would be reinforcing the behavior.  I felt like maybe it was a behavior sometimes.  Maybe it was a function of her motor planning/neurological disorders.  We went back and forth about it.

Me stating that she needs time to process before acting physically.  Give her some time, offer your hand, and 9 times out of 10, she will be fine.

Them saying that by not forcing (not the word they used but I can’t remember what it was) compliance we would be reinforcing that flopping is a way to avoid doing something she doesn’t want to do.

Aside from the fact that there is an actual medical reason why she cannot act immediately, I was very uncomfortable.

Finally, I emailed that I did not want Evelyn being physically forced to comply with requests unless she was putting herself or someone else in danger or really disrupting the education of other students.

This set off a shitstorm of emails and meetings.  One educator told me that all of the people working with Evie were afraid to touch Evie after my email.  But I digress.

I could never really articulate or even sort out in my own mind why it was so important that Evie not be physically forced to do anything.

Now I get it.

I don’t want my child, your child, any child to ever feel that her body is not her own.  To know that nobody has the right to force her body to do anything.  And I can now see how what this woman terms “compliance training” aka “90% of autism therapy” could be a slippery slope to making people like this woman, like my daughter, even more vulnerable to abuse.

Children with autism are being taught to function in the world by learning to pretend to behave like neurotypical people.

For instance, a big focus of Evie’s therapy was “making eye contact.”  I couldn’t understand why this was so important.  Finally, I said, “I really don’t care if Evie makes eye contact.  I want to find a way for her to communicate what she needs.”

Who does eye contact REALLY help?  Does it help Evie when it seems aversive to her?  Or does it help other people feel more comfortable with Evie?

I’m getting seriously pissed off writing this.

Or how about this one?  I have been arguing that I don’t want to see potty training as a focus for Evie at this point because I don’t think she is developmentally ready and because I REALLY want the first, biggest, and if need be only priority to be helping her to communicate basic needs.

One of the arguments provided by one of her educators was that by wearing underwear instead of diapers, her classmates would not feel she was so different.

I can’t believe I even kept my hat on after hearing that one.

Evie IS different.  She will ALWAYS be different.  And if school’s answer is to make other kids feel more comfortable about Evie’s differences by pretending she is something she is not, then I don’t even know what to say.  I wonder how comfortable the kids will feel when Evie pees through her clothing while sitting next to another child.  That ought to make her some friends.

Can’t we teach kids to honor differences?  Probably not, when as adults, we are so focused on hiding them away.

Evie has a tendency to withdraw.  She tends not to withdraw when the people interacting with her don’t try to force normal on her–and follow her lead.  I will never live in her world and know what she is feeling.  But I would go there forever, without a moment’s hesitation, if I could.  To keep her company there.  Because as much as I love her, as much as I try to go to her where she is, it must be pretty freaking lonely and scary a lot of the time.  Not even her mama understands.

And I can speculate away at what Evie needs.  And so can everyone else.

And we can try all different types of therapies and approaches to helping her achieve goals.  From here forward, only goals that will be meaningful to Evie and what she needs to maintain her happiness.

But after reading that blog post, I will never allow anyone to force my child to be compliant.  I don’t care what her cognitive abilities are, unless she is in danger or endangering someone else, she gets to say, “no”.  And like anyone else, there are consequences to saying no.  Sometimes the consequences are negative–like not getting the immense satisfaction of popping bubble wrap.  And sometimes they are good–not subjecting yourself to abuse.

It is hard for me to pick my head up and look to the future for Evie.  Because there are so many things in the moment to deal with.  Because the future is uncertain and unknown.  Because someday I will die, and Evie will still be here.  More alone.  More vulnerable.  And that terrifies me.

So this blog post inspires me to think about serving a population of adults living with autism right now.  Many of them alone.  Vulnerable.  Serving them serves Evie’s future.  Serves mine.

And more than think.  To do something.  Something significant.

But what?



retard time…again


Last summer when I was was taking Evie to her summer school program, I had walk through a classroom to enter the school because the main door was locked.

In the room, there were 3-4 kids working.  When we entered, they all said, “retard” in some way shape or form about Evie.  The adult in the room said, “that is not okay to use that word.”  I don’t know what else because I was busy hurrying through and biting back tears.

As always, in hindsight, I wish I stopped and talked to them about how language can hurt.  But I didn’t because I was close to tears.  Maybe I shouldn’t have hid those tears from them.

I am reminded of this because I just signed a permission form for Evie to be filmed,  again, this year as a group of students and educators work together on a campaign to end the use of THAT word.  This makes me so happy.

The thing that makes me very sad and very fucking angry is that some kid learned to use that word from an adult.  Maybe some of the kids that said it learned it from another child.  But some kids learned it at home.

The “stop being so sensitive”, “it is just a word”, or my personal favorite, “it doesn’t have anything to do with people who are retarded and I would never say that to a person with a disability” just don’t fly with me.

It has everything to do with a community of people who are repeatedly subjected to their medical diagnoses being taken and used in a way that is derogatory and offensive.

Oh you need to roll your eyes when I say offensive?  Tired of hearing it?  Tired of political correctness?

If you are an adult, I have no words for you and your insensitivity.  Well I do, actually, but “fuck you” seems a little hypocritical at this moment.

I would one hundred thousand million gazillion times over rather my kids drop fuck bombs left right and center than use words like: retard, retarded, stupid, dumb, moron,idiot etc.

Why are we so aghast words like, “fuck” and “shit” that don’t refer to people in a derogatory way when we are fine with using words that are derived from making slurs about a vulnerable population of people?

Currently, and for the last few years, I have been trying to stop saying “crazy” and “insane.”  I get it, it is hard to stop saying something we have always said without thinking about the consequences and meaning of our words.  I slip up all of the time and one of these two words floats out.  If I catch myself saying it, I correct myself–especially in the company of Maxine.  But I know that I can strike these words from my vocabulary.

And you can strike the words that humiliate and degrade other people from your vocabulary too.  And you should.  And if you don’t at least try, you’re an asshole.

Asshole or retard?  Which one is more offensive to you?  Which one refers to a population of people in a derogatory way?  Which one just refers to a part of the body?  Squeamish folks with puritanical hangups be damned if you’re still using. “retard, stupid, dumb, idiot, moron” in your everyday language without any sort of guilt or attempt to change that.

I maintain, if you don’t, you’re a fucking asshole if you don’t at least try.







A few little ditties about Maxine that I would like to preserve here…since a baby book has failed to materialize from thin air for her.

Her imagination is in full bloom.  And it is so lovely.

She has latched onto flying lately.  Sometimes with a cape.  Sometimes with her wings.  And sometimes on a plane.

Always in her “real sky” where we take giant bites of the cheese moon and eat the ice cream clouds before snuggling up in them for a cozy nap.

In all of her imaginary scenarios, we run into problems which honestly vex her…the safety of sleeping in a cloud without falling, messes that her imaginary seals make, you know, the usual.

Then there are the learning experiences…and parenting choices that I choose to make.

We were talking about what makes animals wild.  One of the examples that I provided was that wild animals hunt/gather their own food.  This lead to me apprehensively showing her a youtube video of lions hunting zebra.

I was apprehensive because I don’t want there to be a disconnect between my little carnivoires food and its source.  I want her to understand that meat doesn’t come from a store.  It comes from an animal.  To forget that or put that out of our minds seems irreverent to me.

At the same time as I want her to be grateful for the unwilling sacrifice animals make to those higher up on the food chain, I was a little afraid it would be too much for her to process.

I watched her watch the video of the lion hunting the zebra.

Not disturbed.  Fascinated.  Not in a bloodthirsty way.  Just in the way that a three year old processes new information.

When it was finished, she was quiet for a moment, and then asked, “Can we see one of zebras eating lions now?”  I told her why that wouldn’t work.

“Is there one of tigers eating lions?”

Another strike out.

“What videos of animals eating animals do you have on your ‘puter?”

So that put any worries, I had, of damaging her with too much information about the food chain to rest.

We were shopping for new bathing suits for the girls since they go through them so fast–they swim twice a week during the winter and about every day in the summer.

The woman that was checking us out: “And how old is your sister?”

Maxine: “Six.”

Woman:  “And how old are you?”

Maxine: “Three.  And how old are you?”

Woman: “Oh, I’m not telling you that.  I’m old.  You shouldn’t ask old people their ages.”

Aside from being incredibly funny how Maxine imitated the speech pattern, I was pissed!  Maxine was a little confused and looked a little hurt.  If it is rude to ask an “old person” her age, it is rude to ask a “young person” her age too.  I personally don’t see what the big deal about telling someone your age is.  If you’re “old”, be proud of it, own it, rock it!  As if there is any less value in being old than young.

Don’t be rude to my kid because of foolish vanity–especially when you opened the door to the question.

I wonder what that taught her.  She was clearly experimenting with a back and forth conversation with someone she didn’t know.  And she got shut down.  I probably am over thinking this one but it really sat the wrong way with me.

Parenting Maxine is so very different than parenting Evie.  In a lot of ways, there were less immediate worries with Evie.  I find myself worrying more about how conversations like the one with the lady in the store or over/under providing information will affect her in the long term.

I  know so very little about parenting.  Each day shines a light on how ignorant I am.  I have a feeling that by the time I feel partially sufficient at any aspect of parenting, we will be onto something new–leaving me bumbling through something new.

the places we go…brought to you by kidwearing

I hate saying that Evie can’t do something.

But the truth is that she simply cannot walk for a long time due to her physical limitations.

Evelyn is not a fan of the stroller.  And, frankly, neither am I.  It takes up tons of room.  And it really limits where we can go.  I’m thinking back to an attempt we made to navigate an unpaved corn maze using the stroller.  Not good.  Think about trying to push a stroller along a beach or into tight spaces.

We have been “wearing” Evie since she was a tiny baby.  We used a lot of wraps when she was a baby and then moved onto the Ergo mostly…although I still occasionally throw her in a front wrap on the moby for perspective on how big she has gotten.  And a laugh.  Not to actually do anything.

Using carriers has been crucial for our family to access the world…keeping life accessible to us.  Limiting the places that we take both children or leaving Evie with a babysitter is simply not something we are willing to consider.  My kids go where I go.  I don’t leave them for longer than a couple of hours.  For me, happiness is its truest when I share moments with my kids.  While I recognize that as they get older, things will naturally change, not yet.

For a long, long time, I’ve been pushing the limits of the Ergo Carrier.  By a lot. I think it is rated for 35 lbs and Evie weighs 55 lbs.  I planned to use it for as long as Evie fit in it.

Yesterday we took a trip to Montreal and Evie rode the carrier for several hours.  Today my back and neck are in severe distress.

I was almost in tears, thinking this morning, “how are we going to go anywhere for any duration of time?”

I posted a desperate plea on Facebook, tagging a few fierce babywearing advocate friends.  In case you don’t know, there is this entire culture of babywearing parents that exists.  To say they are “into it” would be, perhaps, the understatement of the century.  So pretty much within minutes of posting, my post had been replied to, reposted, and replied to lots more by my friend’s babywearing friends.

These people are seriously amazing.  I had many great suggestions and a link to this post from a woman who continues to wear her 11 year old child for reasons similar to the ones that we have carried Evie.  Her 11 year old weighs less than Evie, but I found some great carrier options in her post and in the comments below.

I have, now, ordered several carriers over the course of the last few hours.  Several means three?  Okay maybe more than several.  I consider these to be investments in our family.  These are Evie’s soccer shoes, her art camps, and whatever other expenses typically developing kids might acquire.

These carriers will keep doors open to our family for as long as I am physically able to strap her to my back and for as long as she is safe and happy back there.

I hate being reminded of what Evie can’t do.  Usually, I don’t give it much thought because I don’t have to.  Even better than not thinking about it, is finding a way to do what I think is impossible.  Today, a piece of fabric strapped to my back, well several-ish pieces of fabric, will continue to allow us to go to all of the places we want to go and to keep life accessible to us.

Thanks Nicole (and friends of Nicole), Leila, and Kathlin!

healthcare sucks. mostly.

The next post will be positive.  But I’m going to pitch another bitch in this one.

After some long-hard-tortuous thinking.  After consultation with a psychiatrist, a neurologist, a pediatrician, and a cardiologist.  After sleepless nights.  We decided to try medication for Evie’s newest diagnosis of ADHD.

Overall, we’ve been seeing some really positive things and have felt good about the medication decision.

Today, I got a call from Evie’s special educator that her eye was almost stationary–turned in (known as strabismus).  And that her hands were trembling constantly.  And that she was zoning out with seizure like activity.

I drove to school to get her.

I burned up my phone calling the pediatrician, the psychiatrist, and the neurologist.

I was more than a little pissed off when a nurse from neurology called me back.  Our neuro is on vacation.  I should take Evie to the ER.

No questions about what was happening.

No, I could not speak to the doctor covering for our neuro.  No, she could not relay what was happening to the doctor and call me back.  The only way to communicate with an actual neurologist–go to the ER and have the ER doc call.

Evie could have had a hang nail or a limb missing, the answer was the same.  Go to the ER.

Now, I’ve been there, done that when it comes to going to the ER for neurological issues with Evie.

They run a bunch of tests, they say everything looks fine, and they send us home with instructions to make an appointment with her neurologist and a bill for thousands of dollars.

Evie is medically vulnerable.  Sending her to the ER during cold/flu season without so much as a tiny clue as to why they are sending her?


Our healthcare system is so damn broken, I could scream.

We wonder why people are saddled with insurmountable medical debt and why medical care is not affordable.  Well let me do a little finger pointing.

For the 3 millionth time, I thanked my lucky stars for having such a wonderful pediatrician.   He called me back.  Said not to do the ER.  That he would be happy to see her but that he didn’t think it was necessary.

Discontinue the new medication.  Observe Evie for a few days.  Talk to the psychiatrist on Monday.

That was followed by a call back, on her day off, from the psychiatrist confirming this suggestion.  I REALLY like her too.

But honestly, what good is it to have these wonderful practitioners when the entire system sets everyone up for failure?

And by everyone, I mean you too.  Because guess what?  Evie has a Medicaid waiver for children with special health needs.  Whatever our private insurance doesn’t pick up–which seems like just about everything, the tax payers do.

I don’t know about you, but I could think of about a hundred thousand better ways to spend a few thousand bucks than on a useless trip to the ER–especially one that jeopardizes the health of my kid.

Oh, and go ahead and say something about my kid having Medicaid.  I dare you.  After years of some useless and some life saving trips to the ER, specialists, etc.,  we were drowning in medical debt–even though we paid dearly for health insurance.  And believe it or not, we don’t consider keeping our kid alive a luxury.





I am mama. Hear me roar. You are perfect.

I’m struggling with Evie’s autism lately.

And yes, I’m angry.

Angry with the people that have a singular focus.

Angry with the people that refuse to consider that there may be more than one way to help her.

Angry with the people that are so certain of their own opinion, that they refuse to hear a different perspective.

Angry with the people that view her differences as a detriment rather than beautiful.

Angry with the people that want to force Evie to live in a neuro-typical world–rather than building bridges that will allow us all to cross back and forth between these two worlds.

This is my dear child.  I am her fierce and protective mama.

You may have 200 letters after your name.  Your walls may be lined with diplomas and certificates proclaiming your autism expertise awesomeness.

But I’ve got something better.  I’ve got a mother’s intuition.  I’ve got my child’s best interests at heart 100% of the time–regardless of the budget, regardless of the current educational trends.  I have earned my child’s love.  I know my child better than any other soul on this planet.

I know how to make my child smile.

I know how to alleviate her frustrations at being stuck in a world that mostly doesn’t understand her.

I know what she needs.  And I am tired.  Tired of trying to play nice at the expense of her best interests.

So I quit.  I quit the politics.  I quit smiling and trying to accommodate egos.  I quit all of the bullshit that doesn’t serve Evie 100%.

I am on team Evie.  And only team Evie.

I am sorry Evie.  Sorry that I allowed myself to put the egos of others ahead of your needs.  I failed you.  I will not fail you in that way again.  Ever.

You are my perfect child.  You don’t need to be fixed.  You don’t need to be cured.  You need to be happy.  Like everyone, you need to work for your happiness.  But you need to work for YOUR notion of happiness.  Not the idea of happiness that someone else imposes on you.

We are working in the right direction.  We have some fabulous people that are going to bat for you-and your happiness.  We have some fresh perspectives.  We are seeing some really great things for you.

We are seeing you smile more.  Kiss more.  and cuddle more.

Everything else can take a back seat to that.