Autistic people should:

You know that neat little mind-reading trick that Google has of completing search phrases for you with suggestions?  Like, if I go to google and type in “red” the dropdown box autfills with the following suggestions:  reddit, redbox, red sox, red dawn.

Neat how it does that, right?

Except when you type in, say, “Autistic people should”

autistic people should

And that comes up.

And you know that auto suggest is not magic, but an aggregate of most the common searches-that people typing those words, over and over again to create those suggestions.

And your daughter is Autistic.

And people that you really care about are Autistic.

And you have, you know, one tiny shred of human decency.  Or even a vague and distant memory of having had a tiny shred.  Because that’s all it takes not to be such a shitty human being that it would even cross your mind to type something like this into a search engine.

But, clearly, many people do.

Today, many Autistic bloggers, will be responding to this via flash blogging.  I ask that my friends read, at least a few, of these posts written by Autistic bloggers about what Autistic people actually should be doing.  Read them because decent human beings should be outraged when a group of people are subjected to such vile hate mongering.



celebrating autism

I’m glad Evie is Autistic.  Yep, I said those words.  And I mean them.

When I think about Evie without Autism, I can’t picture Evie.  There is no Evie as I know her.  And as I love her.

While each Autistic person is an individual, I believe that there are exquisite characteristics that she has in common with many other Autistic people.

I love this post, written by Ibby Grace, an Autistic adult, mother, and all around fabulous person. I think my Evie may share Ibby’s love of dapples.  Evie loves staring out the window in autumn as light filters through the trees.  She smiles and she laughs with abandon.  She is joyful and free.  And I love that about her.  She is wonderfully Autistic.

Last summer we spent some time at Cape Cod on the beach.  Evie and I sat at the water’s edge and put our feet in the mud.  Evie lit up when the waves pulled the sand out from under her feet.  We sat like this for a long time.  Just enjoying that sensation.  Enjoying probably isn’t the right word.  More like delighting in that feeling.  When Evie is delighting in something, there is no sense of rush.  She just let’s herself get carried away in the moment.  It is beautiful.  And I think it is very much, Autistic.

Evie is emotionally honest.  I never have to guess with her.  When she is angry, she is angry.  When she is sad, she is sad.  And when she is happy, she is oh so happy.  I admire people that are emotionally honest–their smiles and tears are genuine.    And I find that trait to be very beautifully Autistic.

Some would say Evie perseverates on certain things–foods, people, objects.  I say she is passionately fascinated by certain things.  Like her Uncle Tim’s shiny bald head.  Like bubble wrap.  Like popsicles.  Like elbows.  I find both her ability to relish every ounce of enjoyment and her incredible concentration to be laudable.   And fabulously Autistic.

Evie’s walk is magnificent. She leads with her little belly and her feet kick up jovially.  I could watch her walk for hours. And while she doesn’t walk like an Autistic person (because I don’t think that there is a common Autistic walk), she doesn’t feel bound by social conventions.  She walks with individuality.  Which I think is spectacularly Autistic.

Autism is not the road to hell that the fear culture would have you believe it is.  It is an off the beaten path, road less traveled, gem.  Exploring its many treasures with Evie is a gift.  And I feel myself coming more alive and becoming more awake to its possibilities every day.




Autism: a tragedy

When Evie was first diagnosed with Autism, I went in search of an online community for parents of Autistic kids.  What I found was a whole bunch of parents moaning about how Autism had ripped apart their, otherwise perfect, families.  At first, I felt really sorry for them…and really lucky that I had an incredibly easy kid. I stayed quiet and listened but the more I read, the more I was convinced that the misery they were complaining about, was mostly of their own making.

I saw an unspoken competition play out where parents earned martyr points based on how their Autistic kids were screwing their lives up.  I finally would chip in to the conversations with carefully worded suggestions about changing their thinking from a place of negative to a place of positive.

I was quickly lambasted and told that I was a bad mother.  Because I didn’t fight, fight, fight Autism.  Because our whole world didn’t revolve around therapies. Because I hadn’t tried xyz diet.  Because I dared to think that Autism is not a death sentence or a tragedy.

I chose to isolate myself from those communities.

For the past fourish years, we’ve been doing our own thing.  My only goal is to raise healthy and happy children.  We build our life around that.

Evie is six years old.  And when you’re six years old, and already going to school 5 days a week, your time after school and on weekends should be spent doing things that you love.  So Evie does an adaptive swim program two days a week because she is actually part fish and is happy in the water.  And all of the medical stuff that comes with Evie is scheduled during school hours as I do not encroach on her free time.  Ever.

Evie is sensory seeking.  I believe that is how she takes in information about the world around her and that she uses her senses to help cope when things are overwhelming.  I don’t try to dissuade her from that which is instinctive to her.  So that means if Evie wants to squish jello between her fingers and toes, that’s what she does.  And I don’t worry about the mess.   And if she wants to spend 10 minutes exploring a heating grate in the doctor’s office or the rubbery handle of the grill in her back yard, that’s what she does.  And I don’t worry about being ten minutes late or the pile of dishes in the sink (although it would help if my husband would put the dishes in the dishwasher instead of the sink) .

When Evie flops to the ground, I don’t worry about getting her to her feet or making her stop flopping.  I worry about answering the need that she or her body is trying to communicate. Her flopping is not an inconvenience to be dealt with.  A behavior to fix.  I am not a lazy mama who doesn’t set boundaries.  I am the proud mama of a small human being who is worthy of my respect and honor.  She deserves to be accommodated to have her needs met.

You will never hear the words, “I love Evie but…” come out of my mouth.  There are no buts when you truly and unconditionally love your child.  I don’t do a lot of things well, but I am very proud of the fact that I love every inch of both of my children.  And I do that well.

I am not without parental stress.  No parent is. I worry about Evie’s co-occurring conditions like her Epilepsy.  I worry that she doesn’t have a sense of danger.  I worry that she is over-scheduled.  I worry about her when she leaves the protective cocoon that we have built for her and goes out into the world where she is not given unconditional respect as a person.  I worry that she does not have a more sophisticated method of communicating as of yet.  Evie does not stress me out.  Dealing with other people about Evie does–and there are too many people to deal with and there is too much red tape to hack away.

But I would certainly lose at the parental martyr game.  We are not living a tragedy.  And would you believe it if I told you that I have an easier time parenting Evie than I do Maxine?  Because that is true…and Maxine is not a hard kid to parent either.  My marriage is not being ripped apart by Autism.  I cannot actually remember ever having a single argument with Scott about Autism or Evie.  Because we are united in our mutual love and respect for her and our unfaltering desire to raise happy and healthy children.  Our time is not consumed by endless therapies as we have no desire to see Evie perform like a trained chimpanzee.  Life is pretty good because we usually go with the flow.

100,000,000 parents  would tell me that I am doing it all wrong.  And I might listen if they seemed happy.  If they seemed like they enjoyed their children. But the people that are telling me how wrong I am about every possible thing, are the same ones that are so caught up in the tragedy of Autism and the misery of their existences as parents of Autistic kids.  No, I don’t have all the answers.  And I’ve gotten more wrong than I’ve gotten right.  But my kids are both happy.  I’m happy.  And at the end of the day, I know that I am getting the important things right.

So thanks, but no thanks, you can keep your  copy of “How to Ensure that Autism Destroys Your Family.”  We will write our own book.

Wait, Evie is not Autistic?

I have had person first language drilled into my head since Evie started Early Intervention at the age of 6 months or so.  For those of you that don’t know, person first language means that you would say, “Evie has autism” and not, “Evie is Autistic.”  The thought is that you need to separate the Autism from the person.

I didn’t even realize there was a debate about  it within the Autism community.  And honestly, I would cringe when I read or heard someone refer to a person as Autistic because I have been so heavily indoctrinated.  But I’m learning.

You wouldn’t say that a person who has cancer is cancer.  So you shouldn’t say a person who has Autism is Autistic.

But, Autism is not a disease.  And there is a lot of fear mongering involved in linguistically comparing it to a disease–something to be diminished, cured, reduced, fixed.  There is also, not so subtle, shaming in telling someone that Autism doesn’t–shouldn’t define him/her as a person.  That the Autistic person should separate from the very nature of his/her being.

Who is deciding that Autistic people can not identify as Autistic?  Many Autistic adults vehemently insist on being referred to as Autistic.  The Author of  Yes, That Too has devoted several blog posts to her insistence on being called Autistic.  I don’t suggest referring to her as a person with Autism after she has asked to be referred to as Autistic as she is a force to be reckoned with.  She writes thoughtfully and intelligently on a wide variety of topics, has a bachelor’s degree in math and is working on a master’s in math.  And oh yeah, still working on her bachelor’s in Chinese.  And Engineering.  Yet some would have the gall to say she is not what?  Smart enough…capable enough to identify herself as an Autistic person???

I say I am happy.  I say I am human.  I say that I am female.  These are all words that I use to identify myself as a person and to identify with other people. None of these words singularly define me.   Would you ask me to say that I am “a person with femaleness“? Nobody criticizes the use of these words because these words have positive associations associations in our culture.

Autism does not have positive associations with the population at large.  When I was questioning the use of a social therapy that I was not familiar with at our IEP meeting last week, I was told that it was used to work on “the deficits of Autism.”

We look at Autistic people as people with deficits.  That is truly offensive language and discriminatory thinking.  As long as we think of Autistic people as deficient or lacking in…humanity, we make it painstaking for an Autistic person to identify with and embrace a large part of his/her nature.  Stripping Evie of her ability to proudly identify as Autistic would be akin to stripping me of my ability to identify as a woman.

Does being female conjure up images of deficiencies as a person?

The only difficulties that I have as a woman are the ones that our society has dumped on me.  And I say the same is true of Evie as an Autistic person.

Evie is in no way shape or form deficient.  If you think that the facts that she does not have speech or make eye contact often mean she is deficient as a human, then YOU are deficient in acceptance, tolerance, and humanity.

I’ve mentioned that before Evie was born, Autism was pretty much my worst fear for her.  I was taught to fear it in everything I read about this terrible affliction, this Autism, that snatches our kids away and silences them at an alarming and ever increasing rate.

Autism has not snatched my Evie.  It has given me my Evie.  The Evie that I love the heck out of every single ding dong day is wholly and fully and completely and lovably Autistic.  Always Autistic in every single thing that she does as I am always female.  And I have never wished any part of who she is away.  And she is Autistic.  Did I mention that Evie is Autistic?

You can’t take Evie’s Autism away with your language.  And I am as thankful for that as I am outraged that any person would, knowingly, use language to shame, oppress, dismiss and marginalize Evie and her Autistic people.

***Editing to add that while I don’t want to use language in a way that I believe separates Evie from Autism…especially in a way that has a shaming effect, I respect every person’s right to choose how he/she self-identifies.  I should have made this more clear in my original post***

the bigot in me

Today I want to talk about a real jerk.  And she is me.

I was a big bigot today and I am ashamed of myself for it.

I had to pick our pooch, Mae Mae, up from ACL surgery today–otherwise I would not have been on the roads.  Anyhow, I decided to stop at Hannaford to grab a few storm essentials.

I approached the checkout and started unloading my groceries onto the  belt.  The cashier didn’t look at me.  She did not speak to me when I said hello.  And she did not smile.

The entire transaction went on like this.

I went out to my car and was thinking how rude this woman was.  Right?

And then my stomach sunk.

Holy shit, I have spent a long time saying that I don’t care if Evie ever speaks, that I don’t care if she ever looks another person in the eye, and that other people better just get over it if they have a problem with the way that she relates to other people.

And all that is true.

When it comes to Evie.  And people that I know are Autistic.

What if that cashier is Autistic?  I don’t know whether she is or she isn’t.  And it doesn’t matter.  Because I expected, of her, every single thing that I say shouldn’t be expected of Evie.

And I could rail against the injustice of disabled persons not having equal employment opportunities (and the accommodations to make that possible) for hours.  What if I would have hopped on over to customer service and complained about being treated “rudely”?  And say, one in every fifty people that this cashier checked out did the same?

How long would she have her job?

I have a deep rooted sense of social entitlement that I never, for a second, thought that I had.  I take my sense of entitlement to be related to in a way that makes me feel most comfortable to a lot of places, now that I think about it.  I would walk on hot coals with my face to relate to my daughter.  But I don’t extend even a fraction of that civility to everyone.

And I wonder, while I have been busy congratulating myself for being all evolved and progressive and utterly without bias, what other things I have missed along the way–am still missing.

This is the problem.  I am the problem.



IEP meeting update

We had our final IEP meeting yesterday.  I was really nervous for it as I had all of this new information floating around my head.  And things I needed to say.  And make clear.

And I flopped.   If you know me, you know that public speaking is not my forte.  And even though this isn’t public speaking, there are enough people in the room to make me incredibly nervous.  I could feel my face burning red and I just couldn’t get the right words out.

My mother, a retired special educator, attends every meeting with me.  She told me after that I sounded frustrated with the team.  Ironically, it was probably one of the few times I was not frustrated with the team.  I was frustrated with myself for my giant fail.

The meeting went pretty well.  Her team seemed very receptive–even if they didn’t agree  (which I suspect is true in many cases).  They had a great suggestion for increasing social opportunities, in a fun way, for Evie.

I was a little disappointed that our outside augmentative communication evaluation was “downgraded” to an observation and suggestion session.  Apparently, the agency changed how things were done.  I don’t know exactly what these changes mean but I am trying to keep an open mind and stay positive.  If not, we will find another way to pursue it.

This is a copy of the follow up email that I sent after our IEP meeting.  If anything jumps out at anyone…or if you want to provide any feedback.  I am all ears!

So I wanted to clarify how i am feeling about Evie’s Autism.  I’ve been feeling like this for a couple of years but haven’t really been able to articulate what I am feeling and haven’t really known if my feelings have any validity.  Recently, I’ve been doing a lot more research which has included speaking to many autistic adults–what they have said has lent credibility to my feelings.

I have come to see Autism as a way of being.  And feel that people that are not autistic do not have the right to expect Autistic people to conform to non-autistic cultural norms.  And I have learned that many autistic adults find this expectation offensive and in many cases, physically painful.  The example that I am given most often is eye contact–that eye contact is cultural and can be physically painful for Autistic people to make it.

Evie has disabilities.  I do not consider certain characteristics of autism to be disabilities–for example social behaviors like eye contact, body orientation, etc.  Therefore I don’t want ANY focus of her education at school to be on changing those behaviors which are part of her nature.  I would say that this is a great learning opportunity for neurologically typical students–not everybody behaves the same and learning to coexist with Evie and people like Evie is important.  I am more than willing to give my permission for educators to discuss Evie’s differences with the kids openly.  In fact, I encourage it and welcome them to ask questions they may have about Evie—hopefully to increase understanding and tolerance.

At the same time, Evie does have behaviors that are offensive and dangerous to her peers.  I would like to see these be the things that we focus on changing:  biting, stealing food, invading personal body space, etc.  I fully understand that Evie’s Autism does not give her more rights–just the same rights as everyone else.

Further, it is increasingly important to me that Evie has bodily autonomy.  As we have discussed in the past, I do not want anyone physically forcing her body to do anything unless she is in danger, endangering someone else, violating another person’s space/body, or disrupting the education of others.  I am fine with gently guiding Evie’s body, when she is willing to be gently guided, in other situations.  Like the example of teaching her to zip her coat, pull up her pants, etc.  But I don’t want Evie to be, even gently guided, to conform to neurotypical socially acceptable behavior except if it falls into the cases above–where her behavior is violating the rights of others around her.

I don’t believe that Evie needs to be cured or fixed and would; therefore, like to concentrate her education on areas that help her function with her disabilities.  I hope that makes sense to you.

As we discussed, I want communication to be the major focus of Evie’s day.  I would like everything that doesn’t involve communication or support communication to be secondary to this focus.  I like the 3d object success that you are seeing.  I would like us to explore all mediums of communication including signing, technology, etc as well.  When the iteam shares its findings, will that just be with the school team or can I listen in as well? 

As I mentioned in the IEP meeting, I would love for as much of Evie’s program to be centered around the things that she enjoys or does well–using those things as a jumping off point for skill building.  Certainly, I realize that this might not always be possible. I am also hoping that a thorough evaluation, from a developmental perspective, will be conducted before introducing a new skill.

I really like J‘s idea of using COACH to help determine how Evie’s time should be spent throughout her day–Evie has so much energy and attention and I would rather that she focus on a few goals and spend her energy and attention on those goals.  I like the idea of looking at Evie’s schedule and natural day at school and building goals around helping her navigate through her day more independently–like pulling her bag, getting her coat on, etc.

I would like to see Evie continue to spend time with her peers when possible and as tolerated by Evie.  In terms of social goals on her IEP, I would love to see this built in.  Further, it would be great if any kids would be interested in voluntarily partnering with Evie for recess or lunchBoth so she will have a chance to socialize and get to know individual students and so that they will have the opportunity to get to know her.

If the RDI therapy you have in mind looks like the video I sent, I am all for it.  I find myself naturally communicating with Evie in this way and find it very effective.  What I wouldn’t want to see happen would be to turn it into a social behavior intervention–asking her to make eye contact or orient her body in a certain way.

Evie needs to learnsafety commands and to follow directions to ensure her safety.  In teaching Evie to follow other verbal prompts.  I encourage you to use prompts that will be useful to Evie or things that she is already doing so as not to use too much of her finite energy/attention to do this.

Flops–in speaking to autistic adults i have a better understanding of what I have been feeling instinctively about flops.  Certainly, sometimes they are a behavior.  But I don’t think we know enough about Evie to ever assume that they are behaviors.  From a neurological perspective, Evie may be shutting down for a myriad of reasons–motor planning, processing difficulties, lack of information, sensory stimuli, etc.  I would like to see, for Evie’s well being, us all to assume flops are a function of her neurology rather than a behavior until we absolutely know differently.  I think calling everything a behavior is hurtful and that consideration needs to be given to that fact that she does not even have basic communication to express needs and wants.

Lastly, I would like to come in and observe Evie for an entire day when she is engaged in her normal program.  I would leave if my presence is disrupting her ability to concentrate.  Do you think this is possible?

raise your hopeful voice you have a choice


Anyone that lives outside of my head, which is everyone but me, might not understand this.  My very favorite song, ever, is “Falling Slowly” by Glen Hansard and Marketa Irglova.  If you can listen while you read this.  Assuming anyone is reading this..

I keep imagining the lyrics as a conversation between Evie and me.  And I know, that they weren’t written for us.  But, in my mind, they were.

mama:   I don’t know you
mama:  But I want you
mama:  All the more for that

evie:  Words fall through me
evie:  And always fool me
evie:  And I can’t react
mama:  And games that never amount
mama:  To more than they’re meant
mama:  Will play themselves out

evie:  Take this sinking boat and point it home
evie:  We’ve still got time
evie:  Raise your hopeful voice you have a choice
evie:  You’ll make it now

mama:  Falling slowly, eyes that know me
mama:  And I can’t go back
evie:  Moods that take me and erase me
evie:  And I’m painted black
mama:  You have suffered enough
mama:  And warred with yourself
mama:  It’s time that you won

evie:  Take this sinking boat and point it home
evie:  We’ve still got time
evie:  Raise your hopeful voice you have a choice

evie:  You’ve made it now
evie:  Falling slowly sing your melody
mama:  I’ll sing it loud

I’ve raised my angry voice for you, Evie.  Now, I am raising my hopeful voice for you.  We…I have a choice to make things better for you.  For everyone.  I’ve made it now.  And I am going to sing your beautiful song.  Loud.

SOME of what it takes to care for Evie

I saw this link to a care map on a blog that I follow.  I’ve adapted it to illustrate the points that I am trying to make.


I know that for a blog called, “Love Explosions”, it sometimes feels more like anger explosions.

I’m sharing this,not to try to garner sympathy.  We don’t want or need sympathy.  We are very happy most of the time, contrary to what it might seem like when you read my blog.  I’m sharing this so that you will have a tiny bit of understanding about what it takes for us to be a family.

About our Family:  We live in Vermont.  My husband, Scott, travels about 80% of the time for his career.  Out of the state.  Usually just during the week.  But sometimes it eats into the weekend.  I (Beth) take care of an adult, in our home, who has developmental disabilities.  This is more of a joy than a job but it also comes with responsibilities that cannot be ignored and coordination issues of its own.  We have two daughters, Evie, who is six.  And Maxine who is three.  My mother, Alison, lives with us in an inlaw apartment in our home.

Evie goes to school Monday through Friday from 8:15-2:45.  She does adaptive swim on Wednesday mornings, before school, and Friday afternoons, after school.  She needs more outside services than she is getting.  For reasons relating to insurance, availability, scheduling, and Evie’s quality of life–not overscheduling her, we are not currently getting all that she needs.  You can see, on the map I made, all of the things she really needs.

Maxine has a life too.  I stay home with her and she goes to a few classes: dance, gymnastics, and swim twice a week with Evie.  And she is a pretty demanding little bugger.  She, like any three year old, does not just want to sit in the house and watch me perform daily living tasks.  Nor should she have to.

During the week, I ideally, work out three times.  This almost never happens because my kids’ needs come first.  Other than occasional doctor or dental appointments, I don’t schedule anything that relates to myself.  Not because I don’t want to, but because I can’t keep up with the three workouts a week that I consider most important as it is.  So yeah, I don’t really have a personal life.  I’ve let most of my friendships go because I don’t really have the time or energy to be a good friend.  I’m mostly okay with my personal situation right now and know it will get better as Maxine gets older.  I do feel a burning need to fulfill another part of my life–which is contributing something significant for the population of people to which Evie belongs.  That cannot take a back burner.

On the weekends when Scott is home, I catch up on sleep.  Evie has sleep disturbances which often keep me awake and I have periodic bouts of insomnia. I also spend a lot of time playing catchup on household chores, paperwork, laundry, email correspondence, etc.  And of course, we spend time doing fun stuff as a family.

We do have help.  We have a fabulous babysitter, Heather, the only person outside of our family that I trust to take care of Evelyn while I am not home.  We have a housekeeper who comes once a week.  We have the driveway plowed, etc.

We have appointments for Evie coming out the wazoo.  They often involve traveling to NH or Boston.  They often have to be rescheduled because of weather, illness, other life events.  Evie has a difficult time sleeping in places other than her own room.  More than her normal sleep difficulties.  Appointments are a disruption in Evie’s routine and they can throw her off for a week.

I feel like I spend half of my life on the phone talking to insurance, scheduling appointments, canceling appointments, getting support/advice and arguing with people about any number of things relating to Evie .  It is energy sapping.  I wish the entire world would convert everything to email.  Oh and until very recently, we had a huge amount of medical debt and our phone rang constantly.  Debt collectors–not happy with the amount of money I decided to pay monthly.  Both the phone ringing about 20 times a day and the debt itself was very stressful.

Just like everyone, we need to shop and run errands.  This is best done without Evie as she gets restless in the stores and I can’t stand the dirty looks we get.  And because the child is a geographical genius.  I’m not kidding.  She fuh-reaks when we pass a road that brings her to place that she wants to go.  It is especially fun in the summer when we have to pass our neighborhood pool whenever we leave the development.

There are simultaneously never enough hours in a day and always too many.

Then shit happens.  Evie kicks into a bad sleep pattern, causing her to miss school and appointments to be juggled and missed.  Childcare to be rearranged.  Inability to get errands done.  Or someone gets sick.  But it throws everything off kilter.  Or childcare falls through.

Evie needs around the clock supervision.  She will put anything and everything in her mouth which is both dangerous and accounts for her killer immune system.  She has zero concept of danger.  And she is prone to wandering.

Then there is dealing with support providers.  If you’ve read my blog you know that we have had issues with many, many, many doctors.  Thankfully, right now we have a fabulous team–including the very best pediatrician, Dr. Paul Parker of Richmond Pediatrics and our new psychiatrist, Dr. Jeanne Greenblatt–she is all kinds of fabulous.  You can see all of the other providers and diagnoses that Evie has on the picture of the map.

We also work with two social worker type people whom are both lifesavers when we need help.  Very competent.  Very caring.  Very understanding.  I couldn’t ask for better.

There is dealing with school.  Which tends to be most difficult at IEP time.  Which is now.  Her entire school team is sweet.  And I know they are always trying to do what they think is best.  But we almost always disagree on the important things.  It is a constant struggle between doing what I know is best for Evie and not pissing someone off so much that it affects Evie.  The very best part of Evie’s school, in my opinion, is her morning paraeducator, Sue.  Sue has worked with Evie for almost two years and she is enthusiastic, loving, positive, and respectful.  Always.  I can tell when Sue is absent from Evie’s day by her mood when she comes home–even though there are probably equally wonderful people working with her.

The question/comment people most often ask/make:  “I have no idea how you do all that you do.”

The answer is that the alternative is not doing it.  Not an option.

So, we muddle through it.  My husband and I spend almost zero time alone together.  I don’t remember the last time we went someplace without the kids.  It has been years.  And by someplace, I mean for even an hour-not a vacation.  We are ALWAYS exhausted.  Our home always feels like a cluttered mess.  And keeping commitments that have a specific start and end time is really hard–like I can’t explain to you how hard.

But we are a happy family.  Seriously.  Like I’ve never been so happy.  And tired.





unlock and unchain my daughter

IMG_4354 (2)

Before Evie turned three, she had some verbal language and she could sign quite well.  Then it left.

It left in little bursts so that we almost didn’t realize it was happening.

“Autism Regression.”  We were told.

“Epilepsy.” We were told.

And we accepted this.  We accepted it because these were things that we can deal with.  I accepted it because autism was a relief to hear.  And Epilepsy, well there is a med for that, right?

We started trying to use PECS (picture exchange communication system…I believe).  But I never really bought into it.

It was so rigid in its implementation.

Evie would play with the symbols which is strictly, not allowed.  They are crinkly and velcro and very appealing to a sensory seeking kid.  Heck they are kind of appealing to me to mess with!

We weren’t allowed to use it at home as she hadn’t progressed far enough through the phases.

To me, your language…your ability to communicate…cannot be withheld from you because you haven’t hit some magic number of successes with “trials.”

Imagine if you could only use your language at work.  Or at home.  Or in the grocery store.  You can only use your language at work because you haven’t mastered everything there is to master about language.  I’m sure I am over simplifying and misunderstanding the reason for the PECS rules but you get the point.  And I don’t care because that’s what it feels like.

Language needs to be accessible.

So I, unknowingly, handed over the key to my child’s ability to express herself.  And I helped to lock her up and chain her inside her own head.

It has been over 3 years since we started PECS.  Almost four.  Her current SLP, agreed that it wasn’t working at her IEP meeting last week.  He has moved onto a 3d object exchange system which he says is working.

I have my reservations about it but am totally in favor of throwing a bunch of stuff at the wall and seeing what sticks.

At the beginning of this year, September actually.  I started putting pressure on Evie’s school team for an augmentative communication evaluation.

At first they ignored my emails all together.  And when I would bring it up in a meeting, I would get blank stares and mumbles.

Then I started getting the arguments that Evie would not make eye contact if using technology.  That having outside agencies make recommendations would muddle things–I believe that, “too many cooks spoil the broth” is how it was put.

After expanding our team to include an outside psychiatrist who all but insisted that Evie have the evaluation, they finally sent in the referral.  Which only the school team can do.  Which is free by the way.  The evaluation just got scheduled yesterday.

The current argument is that; although, Evie is an IPad whiz kid–you should see her navigate around that thing–navigating the ipad and using technology for communication are two entirely different things.

Which I can see.  Sort of.  But can’t she learn to navigate to communicate?

More importantly, why the hell can’t we try it?  And try it with the same enthusiasm all of the other therapies that we’ve thrown at her have been given.

I don’t know if technology is the answer.  But I do know that Evie is capable of using technology.  I know that it can be accessible.  I know that it can be limitless in a way that PECS books and 3d objects are not.

I do know that it is worth a try and that my mama instincts are really keyed into this.

I’ve been told that Evie’s receptive language is almost as limited as her expressive language according to school testing.  But I am not buying that.

I see that she understands.  I think a good deal more than anyone, myself included, probably realizes.

The tests.  They are just tests.  Which may or may not be suited to Evie’s abilities.  Which may or may not reflect Evie’s true abilities.

My last post helped me to meet this fabulous group of autistic adults.  And you will be hearing a lot about what they say, and what they think when I have their permissions to share.

THEY, the adult autistic community, are the experts.  And THEY should have everything to do with developing therapies and education for autistic children.

If you’ve never been afforded the opportunity or worse taken the opportunity to get to know an autistic adult, this might seem outlandish to you.

If it does, YOU are so DEAD WRONG.

These people are so incredibly and mind bogglingly intelligent.  They are funny.  They are caring.  They are sweet.  AND they are compassionate.  A revelation to you if you have bought into the whole stigma that Autistic people lack emotion.

If you care about my daughter, Evie, if you care about me, you WILL listen to what these people have to say.  And you WILL accept that these people, and ONLY these people are the true experts on Autism.

And while no single person is exactly like another, including the individuals that comprise the Autism community, they have the closest thing to insight that we have available.

And they are an untapped think tank.  A pool of knowledge that we disregard.  That disregard in itself tells me, tells you, that we, the population at large, know almost nothing about autism.

This morning, I was linked to this.  And if you don’t have the time to go read it, let me surmise it by saying that Evie may not have “regressed.”  She MAY have shutdown her communication.  You can shutdown for seconds, moments, or years.  You can shutdown visually, you can become temporarily deaf.  Your receptive language can shut down.  Your expressive language can shutdown.

And why is this so important and exciting to me personally?

Because long ago, I handed over that key to my Evie.  And I haven’t even known that I should be looking for it.  And I haven’t given her all of the tools to look for it–instead I have chained her to rigid systems like PECS.  I don’t know if that key to Evie’s ability to communicate is still out there…but I think it is.

While she may never regain verbalization, she still says, “mama” and she still says “ball”.  And I know that she has so much more important stuff to say.

And you know what?  For the past three–almost four years, these Autistic adults are the ONLY ones that, I feel, have, genuinely, assumed that Evie will find a way to communicate.  They are the ONLY ones that have believed in my daughter’s abilities without ever meeting her or knowing anything but what they read on my blog.

I would say I am moved, by them, beyond words.  But look how much I’ve written.

So my eternal thanks and gratitude for these wonderful people.  And I’m off to look for the missing key and to free my daughter from the chains that bind her to rigid therapies in favor of those that are fluid and dynamic–like Evie.