A few months ago, I heard about this really great place that I could bring Evie to work on communication.  I had a totally great conversation on the phone with the therapist about my feelings about ABA.  They do not have a BCBA on staff by design.

Awesome.

We talked about eye contact and how it is not something we should be trying to force Autistic people to do.

Awesome.

We talked about a lot of things and I was so very excited to bring Evie to this place.  So very, very excited to get help in teaching Evie to communicate more effectively.

And then we got there.  We were not working with the same therapist that I spoke with on the phone.

Okay.

And then I went in the observation room and behind the observation glass.

It started off great!  A little bit of Floortime-esque play to get to know each other.  The therapist caught on that Evie likes physical play really quickly.  And they started to make a connection.  I could see it…Evie was signing “more” which she doesn’t usually do unless she knows someone.  Evie was smiling.

I was smiling.

And then, the therapist started to draw the blueberry up to her face so that Evie would “gaze at her face.”

And my heart sank.

Because no.

No, no, no.

This is the exact opposite of what we signed up for.

This is not okay.

The therapist listed off her credentials.  And then started talking about how important joint attention is.  Apparently her definition and my definition of joint attention are not the same.

My definition of joint attention is that we are both paying attention to the same thing at the same time.

Her definition included the criteria that she and Evie are paying attention to the same thing at the same time.  And that Evie references her face (eye gaze).

She claimed that Evie needed to be able to get information from faces in order to develop more sophisticated communication.

I become incredibly inarticulate when I get upset and I was REALLY upset.

If this is true, how do blind people learn to communicate effectively?

She wasn’t really interested in hearing my feelings about it.  Because this is “proven.”

Proven to do what?  Please show me one place where science proves that a person will not acquire the ability to communicate if a person does not look at faces to get information.

I don’t have a gazillion Autism letters after my name.  I have Evie though.  And what Kassiane describes as “helper people” don’t always understand.  Helper people can do more harm than good…no matter their intentions.

There were some posters in the waiting room which tell me everything I want to know about this organization’s level of understanding and respect for Autistic people.  I will save that discussion for another post.

I cried angry tears and sat in the parking lot for a few minutes.  I Facebook messaged with Alyssa from Yes, that too for a couple of minutes until I felt like I could drive.   Thank you, Alyssa for talking to me during those awful moments.  Especially since I know hearing about this kind of stuff must not be easy for you as an Autistic person.

***editing to add a link to this post from Alyssa on how she would have failed Kindie would there have been this kind of thing***

When I got home, I went straight to the experts.  Autistic people.  Evie’s people.  MY people.  My friends.  People that I love and trust in a way that I cannot even begin to express.

And I was comforted by the virtual embrace of their words.  I was comforted to hear that, no.  No, I was not being over the top.  Most of them do not read faces to get information.

I was once again caught by the loving safety net that these people spread each time I feel like I am falling, falling, falling.  Falling alone.

Thank you to the beautiful people that helped me yesterday–Alyssa, Kassiane, Zach, Deanne, Kelly, Savannah, Cynthia, Cara, Brenda, Michelle, Emily & Michael.  And to the others that are always there with the right words.  Everyone should be so lucky to have friends like you.

I started a new Facebook page where parents that love and accept their Autistic children can gather.  Where we can make our voices heard.

Please go “like it”  Parenting Autistic Children with Love & Acceptance.

From the pulpit come the dangerous voices of parents who tell the world that our Autistic children are less than.  That it is okay to measure the worth of our children by the speed in which they acquire skills.  By where they go to the bathroom.  By the number of birthday invitations they get.  By the financial cost of raising them.

Their voices are loud and dominate the conversation around Autism.

When their dangerous words are criticized, they cry about how unfair it all is.  And their disciples rush to give them the pity that they seek.

They insist that their voices should be heard over the voices of Autistic people.  That their feelings matter and that the feelings of Autistic people, hurt by their words, do not matter.

They insist that they have a place at the table in the disability community.  But they aren’t disabled.  They aren’t even friends to those with disabilities– the only people that belong at that table.

They continue to invite the parents of newly diagnosed children to their pity party.  And their words go unchecked by the real voices of Autism.  Because they are loud.  Because they are powerful.  Because they have privilege.  Because they bully any person that dares to dissent.

These are not the voices we want shaping the world in which our children live.  In which Autistic adults live.

I don’t mean to be all rah, rah, sis, boom, bah.  But damn it!  We, as parents, set the tone for how our children will be received in this world.  Whether they will be looked upon as burdens to bear or accepted as valuable human beings with real feelings and real contributions to make to the world.

Parenting Autistic Children with Love & Acceptance.  I hope to see all you loving parents and friends of Autistic people there.

I was standing outside the Boston Aquarium Saturday morning and saw a friend’s Facebook status.

“If it’s not working, do something different.”

So simple.  So true.  And so easy to forget.  Azzia from Bipolar-A Neurodiversity Approach is ever practical.

As it happened, I was standing outside the Aquarium with a 58 pound seven year old on my back.  She was playing with her ipad and I was fiddling with my phone.

We were making it work!

We are still learning how to make it work for our family.

I used to feel really stressed about vacation.  Because Evie didn’t enjoy much of what I thought she should enjoy.  And I would stress out because I couldn’t make it enjoyable for her.

Eventually, I realized that I was trying to make what I think is enjoyable work.  I wasn’t compromising.

My ideas about what vacation should be were far too rigid.  I needed to learn to go with the flow. Vacations shouldn’t be stressful.  I get stressed when things don’t go as planned.  So, some things I overplan an some things I don’t plan at all.

Here are some things we do to make vacation work for our family:

• When possible, we do long weekends rather than going someplace for a week or more.
• Both of my kids love to swim.  It has a really calming affect on them.  So we try to always book stays at hotels with pools.
• I’m an over packer.  I try to have things for every eventuality.  I used to really stress out that I was going to forget something crucial.  Someone finally reminded me that I can get most things we need in most places we go.  So I pack medicine and our back carriers for Evie, and bathings suits first and try not to worry about forgetting anything else.
• I pack tons of snacks.  Dry snacks mostly.  Ones that don’t stain or stick.  My girls like veggie straws, wheat thins, cheddar bunnies, cheese sticks, celery and carrot sticks, etc.
• Normally, I don’t let them eat in the car.  But on trips I do.  Pretty much as much as they want.  And I don’t worry about the mess….dry snacks can be vacuumed up after the trip.  Actually, I just had a thought about letting our dog free in the minivan….hmmmm no vacuuming?
• Messes in my own home don’t bother me but I get stressed out by messes in other people’s spaces.  Even in hotel rooms.  Evie likes to crumble food up into little bits and trail it behind her a la Hansel and Gretel.  We bring a dust buster now and I don’t worry about messes in the hotel room.
• Both of my kids love the novelty of staying in a hotel.  Hanging out in the room is fun for them.  Even more so for Evie.  She likes to get on and off the beds.  Open and close the door while that fold over bolty thing is on.  Look out the windows.  Swim in the pool. Etc.  I killed my tendency to feel that every moment of vacation has to be go, go, go.  The tendency that we need to squeeze every last thing in.  We don’t.
• I accept that different family members have different needs and interests.  I finally understand that it is okay for the family unit to split up on vacation.  We don’t have to always be together.  Like today at the Aquarium.  Evie liked it for a while and then she was done.  Maxine was still very much engaged and wasn’t ready to leave.  Rather than making Evie stay and be miserable or Maxine leave before she was ready, I went outside with Evie and Maxine stayed inside with Scott.  Easy-peasy.  Nothing to stress out about.
• Because we really never know who is going to like what or how long either of the kids are going to want to stay, nothing is carved in stone.  Like today.  When we went outside, Evie hung out on my back in the carrier for a bit to decompress.  Then we walked around touching stuff.  Evie loves touching stuff.  Touching new things in new places is all the shit to her.
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• ] /m,kip89
• Evie wrote those suggestions–so I am keeping them.  Someday when we have a more robust common language, I will ask her to translate them.

Dear parent.

I’ve written and re-written this several times. I kept telling myself, “less harsh.”

But no. No.

You wrote down horrible things about your child.

And I’m horrified by you.

Then you said those words out loud.

And I’m horrified by you.

I know that you have said things and done things designed specifically to hurt Autistic people before.

But these are your children. YOUR beautiful children.

And I’m horrified by you.

You could choose love. And I know that you think you do.

But you don’t. You choose hate. Hateful words designed to swathe you in the pity you crave.

And I’m horrified by you.

You’re jealous of the other parents for having the kid you wanted but didn’t get. How could all of the soccer goals, the continence, the milestones met “on time”, the uninterrupted basketball games, leisurely walks in the mall, ever, for one single second, compare to what you do have? Your children. The children that you DO have.

How can you want something other than the children that you are very blessed to have the opportunity to love and cherish? How can you think those thoughts? Let alone record them for your children to stumble upon?

I’m horrified by you.

Your words: And I’m sure I don’t realize how lucky I am to have an autistic son who can talk, and a daughter with Down syndrome who can hear as much as she does, and is doing as well as she is.

My daughter doesn’t talk. She is somehow lesser than your child for that reason? I am worthy of more pity pats on my head than you because I bear the greater burden? No Lexi. You can have my pity points to cash in and I will be over here loving my child just the way she is. Over here not coveting the other parents’ kids. Because I’m a freaking mama and I KNOW that there are no better children than my own.

I’m horrified by you.

Your words: I listen as you whisper in your child’s ear. You hum songs and they respond in delight. My heart aches as realize that my daughter has never heard the sound of my whisper. That late night songs sung to comfort and every whispered, “I love you” never made it past her tiny ear canals.

You’re a mother. You should know. Love is not what you say. It is what you do. Love is not what you hear. It is what you feel. What do your children feel?

I’m horrified by you.

**editing to add a link to a post, also written in response to this by a disabled woman who lets parents like lexi know exactly how it feels to be parented like this.**

I wanted to talk a little bit about what I call “special voice.”

Special voice is like nails on a chalk board to me.

Special voice is the in which many adults talk to Evie and her disabled/autistic peers.

Special voice is a weird combination of firm-nasty-baby voice.

It is often combined with over-prompting (which I wrote a little about here).

Let me give you an example.

Yesterday when I picked Evie up from her summer program, I had the opportunity to observe a little.

All of the kids were working on an art project.  One of the paras said to her student, “Now!  You are only going to pick one more color.  Then you are going to get a pipe cleaner.  And you are going to use your quiet voice.”

I get the importance of setting expectations for many kids.  I do.  However, art, in my opinion, should never be directed.  This is one of the places that we can let kids do their own thing to a great extent.

It is totally unnecessary and tiresome to be prompted to this extent.

And the kid was being quiet.  Why do we need to prompt a kid to continue to do what he is already doing?

And it isn’t just what was said.  It is the special voice that she used.

I try to avoid baby talk–even to babies.  But baby talking a 5/6/7 year old is just inappropriate.  And condescending.  It doesn’t matter if the child is disabled.  Stop it.

And the tone of the baby talk in special voice is at odds baby talk.  Using a voice that is ridden with something nasty.  I can’t quite explain it.  It is almost disgusted reprimand?

Preemptive reprimand?  What is the point of that, even?

Autistic kids are routinely spoken to like this.  Actually, I hear versions of special talk, spoken to all kids.  And I think it sucks.  Children are worthy of our respect.  When we truly respect them as people, it is reflected in our actions and the way we speak to them.

Pretty simple–treat others how you would want to be treated.

Today I wanted to write about something which will probably be unpopular with most Autism “experts”.

I want to talk about the potential benefits of less therapies.  I want to talk about eliminating interventions.  I want to talk about why what is called “prompting” is actually forcing and how that should be stopped.

Basically, I want to make the case for backing the eff off Autistic kids–Autistic people in general, actually.

Before you start screaming, know that I propose that we replace the over-ambitious therapy schedules, the interventions, the “prompting, and all of that garbage–and yes I do think most of it is garbage–with something gentler.  Friendlier.  Dare I say more humane?

I propose replacing all of the garbage with more supports, more accommodations, and more acceptance of differences which naturally occur in human beings.

Let me start by saying that before Evie was diagnosed with Autism, we went through the ringer with exploring all sorts of progressive diseases which, at the time, were being considered as the causes of of Evie’s physical disabilities.  When she was a baby, I started sucking up every last of iota of therapy offered.  Pretty quickly, it started to feel like too much.  When I voiced this, I allowed myself to be convinced that it was needed.

Make no mistake, I am not saying that PT, OT, and Speech have no place.  I am saying that by the time Evie was two, she was receiving all of these services plus.  To the point that almost everyday she had some type of therapy.

We had a developmental educator that was extremely concerned that Evie didn’t have interest in stacking blocks or coloring.  She had all of the best intentions–and I actually adore this woman.  But to this day, I remain scarred by the blocks and I have many cringe worthy memories of myself trying and trying to get the poor kid to stack and color.  When I would say, “maybe she just doesn’t want to stack or color,” she would tell me how developmentally important–essential it was for kids to do this.  I’m not arguing that this isn’t a developmental milestone for some kids.

But when I look back now, I can say that I was right.  Evie just did not want to do those things.  For reasons unknown.  She may or may not have been capable of doing those things.  But spending hours and hours and hours of time trying to get her to achieve that particular milestone seems so ridiculous to me now.  Not achieving those milestones didn’t affect Evie’s outcome.  And I wonder why we expect development of disabled kids–any kids really–to be so linear?  Would it not have been better to devote far less time insisting that Evie march the development march?  Couldn’t those hours and hours be better spent on more productive therapies/supports/accommodations?

When we slowed all of the therapies down to a crawl, let go of our expectations about development, and remembered that Evie is actually a kid that deserves to be a, you know, kid, Evie’s quality of life improved.  And so did ours as parents.  I know that there is a tremendous amount of pressure to “intervene” when a kid is not doing things according to the book.  I know there is a tremendous amount of guilt, that you feel as a parent when you’re not doing enough for your kid.  But enough can become too much really quickly.  And I would argue that the current prescription for early intervention is an overdose.  If I could go back and do it again, we would do a bit of pt and a bit of speech.  And we would do the hippotherapy and aquatic therapy because Evie loved those and because they turned out to be the most beneficial.  Coincidence?  I don’t think so.

I’ve come to hate the word intervention.  Evie doesn’t need an inte ervention.  I don’t want to stop behavior.  I want to learn the cause of it.  Then I want to support her or accommodate her as necessary.  When we look at behaviors as needing intervention rather than understanding, we cut out the most important piece of the puzzle.

Let me give you an example.

Before we knew that Evie is Epileptic, she would stare out the window at the sunlight.  Sometimes she would blink, sometimes she would laugh (in what we would later learn is called and epileptic aura).  When she first started doing this, I would close the shade when we were trying to do therapy.  I thought she was distracted.  If closing the shade wasn’t possible, I would position her so that she could not look out.

Turns out Evie was having seizures.  And that one of the things that induce her seizures is sunlight filtering through the trees.  Had I not been so focused on this “behavior”, maybe I would have picked up on the Epilepsy sooner.  So, yes it turns out that closing the shade happened to solve the problem.  But by focusing on the intervention rather than the cause, I missed something really important.  Closing the shade is an accommodation I make for Evie not an intervention.

Sigh.  Prompting.  What prompting seems to mean to many professionals is forcing.  Forcing has been called prompting so much, in fact, that many Autistic people will have a well-justified shit fit if you say that you practice prompting.  Because when they hear “prompt” they think back to their childhoods when their bodies were forced to do things against their wills.

When there is resistance from the person you are prompting and you keep “prompting”, it actually ceases to be prompting and it becomes forcing.  We have, somehow, come to accept that it is okay to rob Autistic people of their bodily Autonomy.  Calling it therapy doesn’t make it okay.  In fact, in makes it grosser.

So, I do prompt Evie physically.  The non-abusive kind of prompting…because I love her and respect her.  What prompting looks like around here is this.  Evie is hungry.  I take her hand and I guide her to the pantry so she can show me what she wants.  If she shows the slightest sign of not wanting to be guided, I stop.  If she doesn’t want to hold my hand, I stop.  Um, we are teaching Evie to use her ipad to communicate.  When learning a new icon, the first time or two, I will gently guide her finger to the icon to show her where it is.  She doesn’t want to do it?  We are done.  When she resists, I respect her.  As such, she very seldom resists my prompting.

And I don’t want what I’ve written about forcing to be misconstrued as me saying that there is NEVER a need to physically force a person’s body.  In dangerous situations, all bets are off when it comes to either of my kids.  If either of my children is going to, say, walk in front of a moving car, I will physically prevent them from doing so.  Or any person for that matter.  I simply mean to exercise the same respect for the body of an Autistic person that one would for a neuro-typical person.

I also want to talk about what I call over-prompting.  Even the gentle non-forcing kind of prompting can be overdone.  And this does include verbal prompting.  When I think about the fact that people are up in Evie’s business all freaking day long, the mere thought exhausts me.  At school, she has very little time when another person isn’t right beside her.  Prompting her.  Instructing her.  Talking to her.  Typically developing kids can zone out for a moment or two at school.  I think these moments are essential to a person’s mental health.

Autistic kids have, perhaps, an even greater need for these breaks from stimulation.  I often wonder how much the “behavioral” issues that Autistic kids are labeled with stem from a total sensory overload.  It is unthinkable to me, even if I didn’t think ABA is steaming pile of poop, that I would bring Evie to 25+ hours a week of ABA in addition to her school days.  Not only is she an actual kid.  A person who needs downtime.  She is a kid that gets overstimulated very easily.  As are many Autistic people.  I sure get cranky as hell when I am over-scheduled.  Maxine is a, um, demanding child.  I compare the times to when she is constantly making demands of me to how Evie must feel.  I’m no rocket scientist but over-prompting combined with over-scheduling seems like a recipe for disaster.

So now I’ve told you all about what, I think, kids like Evie don’t need/shouldn’t have.  Let me tell you about what works for Evie.  And I think she is a pretty good example of a happy kid–Autistic or not.

• I spend a lot of time thinking about what sets Evie off in any way.  And I try my very best to support her by accommodating her whenever I can.  For instance, having her hair washed/combed can be traumatic.  Instead of trying to change her “behavior” around that, I accept that this is something very unpleasant for her.  I am so gentle.  I put in loads of leave in conditioner.  I have a really awesome brush that is made for showers.  She doesn’t object at all anymore.  I would cut her hair all off if she doesn’t seem to hate haircuts more.  (Her hair has been trimmed 3 times in her 7 years).
• We’ve eliminated all therapy outside of school.  Well she does adaptive swim but that is recreational and she loves it.  Other than that, nada.  I’m pretty sure adding anything would be counterproductive.
• We don’t force our expectations/interests on Evie.  There was a time when I was worried that Evie didn’t like to play with other kids.  That she wasn’t interested in playing ball.  Now we accept Evie as an individual.  She has her own interests–like swimming.  We offer her opportunities to try new things but accept that she doesn’t usually take to them.
• Sometimes it is clear to us that Evie needs a mental health day during the school year.  When she does, she gets it.  She doesn’t need to be physically sick to need a day off.  Her mental health is equally as important.  These days are really helpful and tend to reset her mood.  Plus I get some extra time with her which is always a bonus.
• Family gatherings/guests can be difficult if we expect Evie to socialize the way that we socialize.  We don’t try to force Evie to socialize.  She can come and go as she pleases.  It so happens that she does enjoy company when she knows that she has an escape route should she choose to take it.
• We are insistent that Evie be respected as an individual at school.  We didn’t see eye to eye with the Autism Specialist (a BCBA) at school–she looked at Evie as a person with deficits caused by Autism.  She failed to see that Evie is an Autistic person with rights to bodily autonomy and deserving of respect.  Her “interventions” caused problems for Evie.  She is not on Evie’s team anymore.  I guess my message here is that maybe you don’t need an Autism Specialist.
• Downtime.  I can’t over stress the importance of this for Evie.  For me.  For our family.
• Sometimes we have to get things done.  Leaving a doctor’s appointment or the grocery store when there is no food in the house isn’t really an option.  So when I HAVE to be somewhere with Evie, I bust out all of the stops: her ipad, bubblewrap (we order it by the giant roll from office supply stores, silicone baking dishes, crackers, etc.  Being in strange environments is hard for her.  I try to accommodate that by bringing things that make her more comfortable.  Another really great thing for Evie is riding in my back on the carrier.  It keeps her very calm and safe.
• Build a relationship of trust and respect.  I know that Evie trusts me.  It helps that she knows that her boundaries will be respected and that I am willing to work with her to keep her happy.  It makes sense that she is not as easygoing with people that she doesn’t trust.

’nuff rambling for now.  Go forth and give your kids some space!