I don't know why

Two days ago I walked upstairs and followed a curious fruity smell into the bathroom.  On the floor was a pillow.  Will had ripped off the allergy case and the cloth that covered it.  So the pillow was a lumpy, cottony mess carefully covered with a bottle of apricot body wash.  He covered the apricot body wash layer with an entire package of pads that he had taken out of the plastic wrappers and had removed the backings from the adhesive.  He carefully covered the entire "pillow" with two layers of pads and discarded the plastic wrappers by the door.  The backings were left in a different pile.  When I moved one of the pads to take a closer look at the orange body wash Will ran over and fixed his art installation.

I followed an unlovely man into a store today

I don’t know what noise caused me to turn my head to look at him.  Probably a noise I wasn’t expecting but instantly recognized as belonging to one of ours.  He and his father silently walked through the parking lot and then into Target.  He had a messy head of dark brown hair and he clutched a blue washcloth tightly in his hand.  He awkwardly lumbered into the store and headed directly to the DVDs.  His father headed in the opposite direction.  I was ridiculously proud of him for being independent.  I lost sight of him when I headed towards the card section where I spent an absurd amount of time trying to decide on a Bar Mitzvah card for my friend’s son.

I was wandering the toy section when I heard him laugh.  I looked up and spotted him in his bright yellow polo.  We passed each other.  I eagerly said, “hi.”

“Hi.”  He responded and I saw my son’s future.

The phrase "unlovely men" can be found here.

Priorities

Why is it that if the fate of the world lay in the balance, able to be saved by the mere act of throwing away an apple core in the garbage Will would drop the core on the ground without a care?  Why is he seemingly unable to throw away apple cores, banana peels, empty bags of cereal, chips or marshmallows yet is as likely to throw a fork away as to leave it on the table?

Autism, I have to admit, this is what makes me want to slap you!  I don’t care about a lot of physical things, as evidenced by my almost exclusive ten year history of clothes shopping at Target, the fact that I have four children and use to cut my own hair.  But autism, I hate cheap silverware.  It bends.  It doesn’t weigh enough.  It just doesn’t feel right.  Autism, I had a set of 24 and now I only have seven knives left!  Yes, yes I know I should occasionally look through the garbage.  It would be like having a smelly Christmas once a day.  But I spent 36 years not looking through the garbage and if my history is any guide it will take me over twenty years before I even start to look through it once a week.

Tonight I needed the paddle for my breadmaker.  I looked and looked and looked but couldn’t find it and was getting frustrated when I had the thought … “it’s in the garbage.”  I looked.  It wasn’t in it but I found a bowl.  So I went to the garage and sure enough, it was there.

I also have been missing the recipe booklet that came with the breadmaker and I suspect it’s in the garbage too.  But I didn’t look for it.  The garbage can keep it.  And I’m beginning to suspect Will threw away the cordless phone that has been tying up my phone line for three days.

I'm thinking about a sleep-away camp for Will

But it's a little scary.  He's never slept away from us or a relative.  Marcy told me about a special needs day camp in Maine.  You pay for your child to attend and you get a great deal for the rest of the family to stay at a local Inn.  Well, I was looking at the application and noticed that it was only $250 more for the over night camp.  Hmmm, but I'm conflicted.  What do you think?

Accomplishments

How appropriate that today’s Blog Hop topic is accomplishments because today was Will’s IEP meeting. He has done well this year.  He’s now reading at approximately a third grade level, up from first last year.  His spelling is third grade level (but he’s a better speller than Jake and Lizzy!).  He took a year to get the concept of numbers using the Touch Math Curriculum but now has mastered single digit addition and subtraction and has almost mastered double digit addition.  He moved into a higher academic level group and is doing well.  And he did this in a two-to-one!   

Honestly, maybe his greatest accomplishment to date is being able to move from a one-to-one to a two-to-one!  I wanted him in a two-to-one because as I told his teachers – there was no one-to-one fairy that would magically show up at our door when he was 21!  I needed him to function in a group.

We worked really hard on Will being able to handle being a group and not receiving individual instruction.  When he started taking classes at MyGym I had to stand one foot in front of him and say “do this” and show him what to do.  He bolted constantly.  He couldn’t jump, and barely listened to the instructions.  I took him twice a week for a couple of years.  I wanted him to function in a group!  Every week I tried to back away a little more.  I gave him as much independence as I could.  I choose independence over “perfection” of movement.  And now when I see him swinging his arms back and forth rather than in a circle I’m usually watching him from the bench.

Wow, look at me waxing on poetically about my boy.  This might as well be a Christmas Letter bragging about my kids.  I sometimes write those – but in them, usually I just list the places that Will didn’t wear pants.

Autism Weekend

I watched three movies about autism last week.  (It’s just what we do for Thanksgiving.)  I watched Autism the Musical.  I watched Autism is a World.  But my absolute favorite autism movie of the week was The Black Balloon.  Reasons:  1. Toni Collette, 2. The monkey hat was awesome! 3. Charlie running down the street wearing underwear (because we’ve reenacted that scene more often than I care to admit and 5.  My favorite line, the mom when told that Charlie went into a stranger’s house and used the toilet, “He hasn’t done that for months!”

In reading that last paragraph over, I realize I forgot #4.  But I’m going to leave it because I liked the movie because it really was about autism.  And autism is … different, unexpected, and occasionally hilarious (though often only in hindsight and with the right people and under the right sort of circumstances).

But Will liked it too.  I found him frequently watching it.  Actually watching it!  Will can fast forward through an entire movie in about 2 minutes so it’s interesting that he actually watched it.  Now go watch it … GO!  Then come back and let me know what you think.

November 1: Autism Shout Out vs. the Communication Shutdown

I’m sure that most of my friends who have kids on the spectrum haven’t heard of either.  I hadn’t, until I read this post at the Autism Blogs Directory.  So, I’ve spent quite a bit of time during the last few days reading posts from the side that communicated that day. 

I was ambivalent about the whole thing and decided not to participate with either.  Because both sides are right.  We all view things within our prism.  I view it from within my understanding of autism.  Which is from the perspective of my family, my children.  I don’t understand mind blindness.  I don’t understand why I can explain a piece of social interaction 500 times to Jake and why he can’t just intellectually understand what to do in a social situation even if it doesn’t make sense!  

Shutting down electronically or not, doesn’t matter to autism in my house.  Jake doesn’t use social media to communicate and I doubt Will ever will.  (Oh, William please prove me wrong.)  Acceptance and awareness doesn’t matter to Will.  But believe me, it does to the rest of us!  I will kick down any door I can for him.

Both plans had merit and bravo to anyone who participated in either!

Entrance: Denied

It’s some weird autistic thing.  Will has decided that no one can open the cabinet the TV in the playroom sits on.  We put some videos in that cabinet and the kids like to watch Book of Virtues on Sunday but Will doesn’t want them to watch that either.  I’ve seen him run in the playroom saying, “No book of virtues!” and chase the kids out of the room.  They leave because he pinches.  (They’re smart self interested that way!)

Then over a week ago Jake had the bright idea to teach Will how to play tag.  He thought how can I motivate Will to chase me?  And naturally thought of the cabinet in the playroom.  He taunted Will by touching it them tried to run out of the room before Will could pinch him.  I told him it wouldn’t end well and wasn’t a great idea, but Jake is 13.

And now no one is allowed in the playroom unless Will is distracted.  Will even tried to get me out, but mama doesn’t play that game!  And I use my “you will not pinch me” voice and say “you will not pinch me.”  And that works about half the time.

Great, another thing to fix – but on the bright side it’s not in the bathroom. 

(A la my facebook post September 1st:  William + chocolate syrup + a cream colored sofa = 1 unhappy mama; then while I was scrubbing the floor, couch and coffee table, Will stuffed a plastic bag, a tube of sunscreen and soap down the bathroom sink drain. Now I believe he is naked in the backyard. I know the question on your mind -- a cream couch woman? My only response -- well, I wanted to match Marcy.)

I just sent an email to my son’s therapist that seemed a little obscene

I started typing the email . . . then paused.  I tried to think of a way to phrase my request so I wouldn’t feel like a 15 year-old hormonal boy alone on a computer at 3 o’clock in the morning.  Then I just gave up and sent the email.

Dear William’s therapist,

Will you please print out a picture of a naked woman with labeled body parts for Will just like the male one you printed up for him. 

Thanks,

From a completely normal and not in any way inappropriate mother

We have the picture of the naked man with labeled body parts taped in the shower because we’re trying to teach Will how to take a shower independently.  

Because these kinds of things are normal in our house!  

I didn’t really think about my 14 year-old daughter, my 13 year-old son and my 8 year-old daughter seeing that every time they took a shower.  Because, come on, there’s also a strip above the sink explaining how to wash hands in case they forget.

But as I sat by the computer feeling like a pervert I realized that my friend’s son had slept over two nights a week ago.  He’d taken a shower both nights and . . . never . . . said . . . a . . . word.  I can’t even say that I think he didn’t notice the picture because it’s right there in black and white – taped on the wall at eye level.

He had to realize that it was for Will, right?  I mean the picture is right next to a list of 19 tasks involved in taking a shower.  It says innocuous things like wash your right arm.  (Of course, it’s male specific and says to wash other things as well but anyone completing the task analysis would definitely be clean after he finished.)

But I need the picture.  I wrote Will a social story about why he should wear clothes and what parts of the body should be covered and I need a visual aid.  After I get it, I promise I won’t tape the picture of the naked woman in the shower and for that I’m sure that my fourteen year-old is grateful.

Delicacy

On Saturday we went to the Fall Festival at Will’s school.  There was a policeman there.  I assume because of some Massachusetts Police Union reason and not because the town feared a mass uprising of autistic kids taking over the government.  Naturally, I went over to chat with him.

Overview:  He admires parents of children with autism a lot.  He has a two year old daughter.  I said I was glad he was there because the more familiarity police have with autism the more likely they are to appropriately interact with them.  I mentioned that Will is going to be huge and I worry about policemen misinterpreting his behavior as threatening.  He looked at Will.  “Eleven.  Yeah, he’s going to be big.”  He agreed.  Then he waxed poetic about how much better tasers are than batons or bullets.  Which, yes, I grant him but just the thought made my head explode.  Then I refrained from saying that anyone who tased my son was in for a massive amount of grief.  Are you proud of me?

Recovery? They're right in front of you!

“Recovery -- what does that even mean?”  I read the question on a post and started to respond but soon realized I was writing the first paragraph of a position paper.  And anything that long didn't belong on someone else's blog without the subtitle Guest Blog by LifeastheMotherof4.  Thus I didn't click publish.  I recognize that the question is rhetorical but something compels me to respond anyway because I’ve read several versions of the same question or statement.

What does someone mean when they talk about their child's recovery from autism?  Clearly they don't mean their child is physically missing and they’ll find them if they merely step outside and holler out a name.  Believe me when I say I try to be aware of where William is physically at all times and I doubt I am unique in my vigilance. Recovery has nothing to do with location.

Autism presents differently in different children.  Some children have symptoms of ASD from birth, others develop normally then regress.  Assuming everyone with ASD follows a similar trajectory or that all children must have shown signs that their parents missed through ignorance or denial is foolish.

Recovery has to do with regression, with the loss of ability.  If a child never had a skill -- therapy and medical intervention is intended to help the child progress and improve their functioning.  If a child regresses -- therapy and medical intervention is also intended to help the child regain that lost skill.

 

I’ve noticed an attempt to pigeonhole autism into a single experience.  Some professionals and parents believe that a child must have shown signs from birth.  If one believes that each child must always have been autistic, naturally recovery seems absurd as you can never recover something that never existed.  If, however, a child had a skill and then lost it, it is natural to hope for and refer to a recovery or restoration of the skill.

I have watched regression.  It is incredibly distressing to watch a child lose joint attention, sociability and, horrifyingly, even the ability to request a drink.  When I talk about recovery for my son I remember his social engagement at a year and a half.  I remember how he played with his siblings and how he pushed his way into any activity because he wanted to be with them.  Now William has a friend he adores and I'm working to help him recover the same skill level of social interaction he possessed at 17 months.  All of his therapy is designed to help restore and surpass previously acquired skills, as well as to acquire new ones.

“Recovery?  He’s right in front of you?” . . . Is he?  Is he right here?  Well, physically, of course, he is.  Emotionally, socially and academically autism gets between us.  Our relationship lacks subtlety and emotional reciprocity.  I have occasionally related to Shylock crying out “If you prink me do I not bleed?” – although, usually when William is pinching me.  But at other times it feels as if we are more emotionally different than similar.  He has either become so complete within himself or is so unable to reach outside of himself his aloofness sometimes seems impossible to breach.

It might be easier if he’d always been like this – adorable and adored . . . but lacking in social reciprocity, stimmy and turned inward.  But he wasn’t.  I am fully aware of how he changed and what both of us lost.  I can see William separate from autism – and that’s a gift, albeit an occasionally painful one, but a gift none the less.

"No Dentist!"

I left two notes on bathroom mirrors, so that I’d remember that Will couldn’t eat or drink anything this morning.  A friend had recommended an oral surgeon to me.  One who has a lot of patients with special needs and does general anesthesia in his office.  Saving over a thousand dollars should have felt better!

I talked to Will about going to the dentist and getting his teeth pulled.  “No dentist!”  He insisted.  Then he added a “no school” because he didn’t want to go there either.   

I felt reassured by the other patient in the waiting room – a teenager with special needs.  His mom said that they’d been coming there for years.   I told Will he’d wear a mask and go to sleep.  He practiced his snoring in the waiting room.  I was nervous for him.  He wasn’t thrilled to be there.  But it was over quickly.  I think he pinched everyone in the room when he woke up.  (I trimmed his fingernails when we got home.)  Sadly, I’d forgotten to warn him about his face feeling funny and hurting and he was not calm enough to listen to me after it was over. 

It was very sad.  He sobbed for 15 minutes in the car on the way home.  Then he pinched me.  As I stared at the blood on my arm, I felt slightly less sad for him.  But his day was ruined.  I kept him home because I didn’t think his teachers would appreciate non-stop pinching when presenting Will with a demand.

When we got home he said, “cut.” I thought he asked me for a cup.  I turned to the sink and filled up a glass.  He didn’t.  He picked up scissors and put them by his lips.  Even though I didn’t think he’d cut himself, I was afraid to leave him alone after that.

Will’s mouth minus five teeth had better equal no braces!  Because if it doesn’t -- I need arm guards . . . and possibly a blood transfusion!

Blue Cross of California

The teeth in Will’s mouth are crowded.  Many of his baby teeth haven’t fallen out and his teeth are large.  Two orthodontists recommended that he have five teeth pulled.  Naturally there is no possible way to do this while he is conscious as there would be blood spilled – including a not insignificant amount spilled by the oral surgeon.  Thus there is a need for general anesthesia to knock him out.  The last time he needed dental work under anesthesia.  Our health insurance paid for it.  Well now, Blue Cross of California decided not to cover general anesthesia for people with disabilities.  Awesome.  I’m so glad I pay extra money for a PPO, on top of what my husband’s work pays, for our insurance not to cover something deemed medically necessary by two orthodontists and a developmental pediatrician.  Stay Classy Blue Cross.  Stay Classy.  No, no I’ve got this.

Autism as Identity

What constitutes identity?  Naturally one’s personal identity is influence by one’s racial, ethnic, religious, and national background.  It is certainly influenced by marital status, educational background, occupation, socio-economic status, health, appearance or by having a particular interest or talent in sports, arts, music and so on; if a disability exists obviously it can have a tremendous effect on how one views oneself and how the world views that individual.  

I often use autism as an adjective to describe my son’s behavior because to anyone who is familiar with autism that gives that person a context for understanding a lot of his behavior.  They get it.  If I mention self-selection in reference to food choices or stimming that person doesn’t require lengthy explanations because they understand how those behaviors look in many people with ASD.

Sometimes AUTISM seems to be the overwhelming characteristic William possesses.  Certainly I can understand how someone who doesn’t know him would consider it to be his identity.  But anyone who knows many people on the spectrum knows that there are as many differences between people on the spectrum as there are between people who are neuro-typical.  While people with AUTISM have similarities they are not identical.

A person’s identity is tied up in what that person and what society deems important and differentiating.  In the US, an important identifier is one’s occupation.  When my husband was in Spain he learned quickly that a job is just how someone made money it wasn’t as relevant to identity as it is here.

In the US, identity is often tied to one’s occupation, socio-economic background, religion, political ideology, racial or ethnic background, marital status and disability if one exists.  My identity is tied up in my religion, family, my occupation (mother), my membership in the special needs community, my politics, my racial background, etc.

People with ASD who are higher functioning have occupations, more varied interests, political affiliations, etc. things that society deems identifiers.  People who are lower functioning have fewer interests, are less likely to have jobs, have more maladaptive behaviors that separate them from society and less interaction with society in general.  And thus society views their identity as autistic.   As William is lower functioning it’s understandable why society views his identity as autistic.  And perhaps it’s appropriate since aside from his physical appearance it is his most recognizable difference.

Autism as identity is, like any other identity, a social construct.  I believe that everyone has identity separate from any physical or mental disability.  Separate in fact from any racial or ethnic background.  Separate from any status we have earned or been born into.  I believe we all existed as a spirit or intelligence prior to being born.  I believe that all our spirits had personality, thoughts and beliefs than influences our actions and life.  I believe that every person has value because they exist.  No differences, no disability effects in any way the intrinsic value of an individual.  I believe we are all children of God, all equally valued and loved.

This post started as a diatribe against viewing AUTISM as the identity of an individual.  But I realized that identity is just a construct made up of pieces of what an individual or society deems important or differentiating.  Autism separates one from the group -- through personal choice, ability to interact with the group and through the group’s unwillingness to interact with the individual.  Autism is not the most important identifier but it is important.  And thus it is understandable that society and an individual can view autism as a defining part of identity.

I am on FIRE!

Monday we got some very sad news.  MyGym is closing.  Will has attended a weekly class there for five years.  I’m very sad because there really isn’t much available for children with severe needs.  I left a voicemail on Monday for the Youth and Family Director at the Y about creating a class for kids with special needs.  I talked to her and the Executive director today about the class and they’re interested.  Then I called the Autism Alliance and they’re willing to help.  So, I’m hopeful.  But I want more than just one class; so, I also called the person who runs all the music classes at the Y and asked her to have a class specifically for children on the spectrum.  We are meeting next week to discuss it.  I’m pretty sure that the music class will work out.

And since I was on a roll I called a go-getting friend and asked if she would help me start a community center for adults with autism.  We’re going to start touring existing facilities after summer vacation.

Marcy – I volunteered you to help.  Thanks.

Forgiving Yourself

I read a blog yesterday on my google reader that touched me.  Even though I don’t know Jenny Alice I like to read her posts and sometimes I even feel as if I know her a little bit.  I like how she writes.  I think she crafts what she writes while my words just sort of spill out of me.  My voice tends more towards writing history papers and I think that hers probably pauses at flowers.  I like reading beautiful word play.  When Bri was in second grade I made the mistake of reading the first Harry Potter book out loud to her.  I like the series but reading it aloud was torturous!  It takes so long to say the words that I had time to read ahead in my mind.  I started editing Rawlings.  I noticed that she was too wordy and used the same words too frequently.  I came up with corrections and wanted to stop reading it but Bri wanted to continue.  Finally we finished and I decided she should hear what a good book sounded like so I started reading Tuck Everlasting to her.  Tuck Everlasting was one of my favorite books in middle school.  It’s beautifully written and filled with gorgeous words.  Naturally, Bri disliked it and only listened to the first several pages before she refused to hear any more.

In her post Jenny Alice writes about falling short.  While I suspect all mothers believe that they fall short, I believe there is a special category for the mothers of children with special needs.  There is so much to constantly do, so much need, such a large deficit and the result is dramatically different than one can expect from a typically developing child.  For years I’ve watched therapists work dedicatedly with my children to help them develop skills.  I can’t do that day after day, year after year.  I get tired.  I go on a vacation.  My routine get messed up and I can’t manage to back in the habit.  I look at the years that have stretched behind me and the years ahead and want to get something to eat and sit down in front of the most mindless TV show I can stomach.

I appreciate my friend Marcy.  She decided to change her attitude years ago.  She often says about autism that she “knows what it’s not.”  And sometimes I need to hear that.  Her attitude about a lot of things can be illustrated by an event that occurred when we were in New York a couple of months ago.  We were staying at the Ritz Carlton overlooking Central Park.  It’s not my kind of hotel but my husband travels so he turned in hotel points and you can’t beat free.  One morning we asked the concierge for recommendations for breakfast.  We wanted to eat north of the hotel closer to the Met.  We stumped the two concierges who were trying to help us.  “We don’t usually send our guests that direction for breakfast.”  One said.

Marcy piped up, “We don’t need fabulous.  We just need adequate.” I mentioned to Marcy on the way to breakfast that the concierges at the Ritz Carlton probably have never heard that before nor will again.

Adequate is alright.  The times we are spot on can be averaged with the times we fall short.  And even though people don’t aspire to be adequate, I think over the lifetime of parenting a child with special needs we should cut ourselves some slack.  Recognizing we can and should do better should go hand in hand with recognizing when we do well.  We would all be happier if we held ourselves to the same standards that we hold others to.

Bridging the Gulf

“It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.” Audre Lorde

The autism community is divided and angry.  One major division is between those who want to cure their child and those who support neurodiversity, those who believe there is nothing to cure.  There is a gulf between those who believe vaccines trigger autism in a genetically susceptible child and those who don’t. 

A friend, who has adopted two children, told me that a social worker prior to the adoption told her, “Through the years, you will bond with your child, love your child, and help her to grow and mature. Along that journey, you will encounter times that your daughter has challenges both big and small, and you will try to help her to ease the pain. When you see that she has a hole or a void in her life, your natural instinct will be to help her to fill it or learn to deal with it if ‘filling’ isn't possible. The desire to find one's birth family is often an aching void, and you will you likely will transition from the vulnerability that you predict you will feel, to finding yourself wanting to scour the planet helping your daughter to find her birth family."

Both groups see the challenges our children face and the voids or holes in their understanding and abilities. But we disagree about how to best fill them.  And that disagreement is often stridently voiced as if there is only one correct way to proceed and believe.

Over the past year I’ve started to occasionally read some neurodiversity and “science based” blogs.  Much of what I’ve read is self-congratulatory, my side is right and only an idiot could think differently posts – though usually put much harsher than that.  To be accurate, the recovery side is filled with a fair amount of vitriol as well.

I read in those blogs that I am stupid, that I’m desperate.  I read that if I use bio-medical approaches to cure my son that I don’t accept or value him and I am deeply and morally offended at that supposition. 

And they read in our blogs that they are lazy, that they are selfish, and that because we fight harder we love our children more and they are deeply and morally offended at our suppositions.

This leaves the autism community offended, divided and fighting . . . but against each other rather than fighting for our children.  I’m so tired of the dismissive language.  I feel as if I’m in the middle of a vicious cycle where one side calls the other desperate and delusional and the other responds in kind.  No group can honestly claim to stand on the high moral ground in this fight and it’s laughable when they try.

Individuals with autism have benefited from both groups.  Regardless of one’s position on vaccines being a trigger for autism, no one should argue against greater attention being directed towards studying the safety of vaccines.  And for many individuals biomedical approaches have alleviated painful symptoms and have led to a greater ability to interact with society.   Regardless of one’s position on neurodiversity, we all want greater societal acceptance and inclusion of individuals with disabilities.  And there are insights we can gain from listening to individuals with ASD even if we disagree with their position on neurodiversity.

Many proponents of neurodiversity support therapy and intervention for their children some do not.  But to brush them all with the same brush is the equivalent of their claim that we are all anti-vaccine when many of us clearly state that we are pro-safe vaccines and support vaccinating children on a limited schedule.  And to state the obvious -- anyone who believes that vaccines triggered autism in their child saw enough value in them to vaccinate.  

Some people with Aspergers support neurodiversity and we should listen to them and learn from them.  But they must accept that they cannot speak for our severely autistic children.  Their voices should not dominate the discussion because our children do not have one.

There have been huge gains in autism awareness and research studying it during the past few years; unfortunately, due in a large part to the ever increasing numbers of kids diagnosed with it.  But part of it is due to the advocacy of many individuals.  Can you imagine what the autism community could do if we redirected the energy we spend fighting with each other towards working together?  There is common ground.  We all want greater societal acceptance and inclusion.  We want accommodations in the workplace for both higher and lower functioning individuals.  And we all want to find more effective ways to teach our children. 

The hostility that has dominated our interactions has come at a high cost.  And the cost is borne by our children.  Both sides continue to harden their positions using increasingly bitter and divisive language and the gap widens.  Reasonable, intelligent and educated people can hold different opinions -- especially in science. 

 

Those who assert that SCIENCE has definitively answered the question “Do vaccines trigger autism” in the negative are dogmatic and no doubt the harshness with which they skewer us contributes to our unwillingness to trust or listen to them.  And in doing so, not only do they ignore the history of science but they also betray what I consider the best part of neurodiversity, the call for respect of differences.  I cannot believe that neurological wiring should be the only difference to be tolerated.  The respect and tolerance they call for should be accompanied by a tolerance for differences in opinion.  

Many of the blogs on both sides of the debate seem to be shrill, self-important mouthpieces for rigidly held beliefs.  Followers chime in and if anyone dares to disagree, the followers pounce with outrage.  Then they follow up with self-righteous diatribes on their own blog.  With embarrassment I admit that I am guilty of that myself. 

 

We must end the war within our community.  But to end it someone must go first.  I do not suggest that we abandon our beliefs or our attempts to recover our children.  But this war has diverted voices.  Rather than speaking for the community we are arguing with each other.  We should disengage from the dogmatic and thoughtless blogs. Let’s call for the tolerance they want extended to individuals with neurodiverse wiring to be extended to those with different positions than their own.  Let’s continue to comment on-line and in the media our position but let’s do it differently.

When we meet vitriol with vitriol and disrespect with disrespect we dilute our power to advocate for our children.  And this time I say it to us -- reasonable, intelligent and educated people can hold different opinions -- especially in science.  We must start at this point and move beyond our differences for the greater good of all our children because there are holes in our children that we are not filling.

Desperate, huh?

One of the favorite words in the toolkit of anti-bio-medical proponents is “desperate.”  The image of a woman running in circles, wringing her hand and crying in desperation comes to mind; how quietly effective.  With one word you can set yourself up as a separate, logical being unconfused by emotion while relegating those you disagree with to a useless, emotionally clouded, dithering position.  And best yet, you’ve put us on the defensive.  Bravo!  While we’re busy being offended you are trying to make us irrelevant.

Someone called me once to talk about moving to Massachusetts for services for her autistic son.  Her husband was from Massachusetts and they had family here.  I, thinking of the services available in Idaho verses services available in Massachusetts, assumed there was nothing to think about.  Of course, they would move here.  However, the cost of living differential involved a lot of sacrifice and they didn’t move back.  I relayed the conversation to my husband.  He didn’t understand why they wouldn’t move here any better than I did.

We have sacrificed quite a bit to remain here.  It’s expensive to live in Massachusetts.  Eight years ago when the economy started to dip, my husband switched roles to remain employed.  Almost everyone else in his department was laid off.  His new position required Monday through Friday travel, which he did for several years.  And our family of six was crammed in a tiny (albeit charming) house built in the 1920s (sans closets) on the wrong side of the tracks.  It was a difficult couple of years.  

Money is an easy sacrifice.  Few people value money more than their child.  My husband’s sacrifice of time spent away from us was harder to make, but the progress our children made was worth it.  So, I’m hard pressed to understand why other people aren’t willing to make the same kinds of sacrifices.

Should I put those who don’t try bio-medical treatments in that same category?  Is it selfish to begrudge the money?  Or is it more hurtful to try and fail than to never try?  Are we desperate and you selfish?  That assertion is a little bit offensive isn’t it?  I honestly don’t believe that people who don’t try bio-medical approaches are selfish any more than I believe that parents who try biomedical approaches are desperate.  I think it’s shortsighted not to try biomedical interventions but I respect that parents are all in different places: emotionally, financially and scientifically.  

I have little expectation of changing rigidly held beliefs but I wanted to let the neurodiversity movement know that calling me desperate doesn’t leave me sputtering with outrage.  I see it for what it is.  The label “desperate” is a smug attempt to set yourself up as an authority.  It’s an attempt to pigeonhole people you do not agree with.  And perhaps for some, it is a rationalization for not trying biomedical interventions or the result of being disappointed from lack of improvement.  I don’t believe that an unwillingness to try bio-medical interventions is selfish.  So, I will not call those who don’t try selfish – but I could and be as accurate as you are when you call me desperate. 

I’ve read the “desperate” argument frequently in the media and online.  While at first it offended me, and I felt belittled parents and their observations; it never struck a cord.  I never felt desperate about Will’s recovery.  I knew a window existed, during which more progress could be made but our decisions have always been for Will’s benefit.  We put Will on the GFCF diet because of allergy testing.  Improved sleeping, awareness, decreased stimming, increased interaction with others, mastery of programs, and weight gain resulted; with the additional benefit of the loss of allergy symptoms such as eczema, red cheeks, tongue sucking and eliminating his abdominal pain.  Treating chronic diarrhea also has resulted in eliminating behaviors attributed to Will’s diagnosis of autism but clearly resulted from biological issues rather than behavioral issues.  Once we observed that treating Will’s biological issues increased his functioning and interaction with the world we were eager to try more.

Will didn’t talk until he was 7.  He wouldn’t have talked without bio-medical treatment.  Because he can talk he interacts with more of the world.  His teachers have a better understanding of what he knows.  And most importantly he is safer.

Are members of the autism community stuck in a vicious circle where one side calls the other selfish in reaction to the others side’s label of desperate, but this side is really just reacting to being called something else?  I hope not.  The medical profession and media are often dismissive of those who challenge them but shouldn’t those of us who are directly affected by autism give each other the benefit of the doubt rather than unthinkingly dismissing those with whom we disagree?

I understand that not every decision a family makes can be for the benefit of one member even if their needs are more significant.  People can only do what they are capable of.  We all fall short of ideal.  The question is – can you see that hope, determination, and sacrifice does not equal desperation?  If you can’t … well, perhaps that doesn’t have anything to do with me.

I wrote this several months ago, long enough ago that I’ve now written something else quite similar,  Bridging the Gap.  I thought I’d post this one first then post the next in my "series” tomorrow.  I find my evolution of thought (aka: whatever sets me off that particular day) interesting.  At this point – several months later --  I think the label desperate has more to do with the person who is labeling than the person being labeled.

Showing Respect for Individuals with Disabilities

Last Friday evening I turned on my computer, logged onto Facebook and saw my daughter’s status update.  “I'm so pissed off right now. Some 7th grader made fun of my autistic brother. I want to punch him in the face so badly right now!"

In the almost fourteen years I’ve known her, I’ve never heard Brianne say something like that   . . . this is the child who apologizes to ME when I’m upset.  Her update, in a nutshell, explains why we need worldwide acceptance and tolerance for people with disabilities.  It hurts people when we mock, exclude or devalue individuals with disabilities.  And it doesn’t just hurt the individual.  It hurts their friends, family and people who work with and for them.  Society has made significant progress over the last two hundred years and perhaps that is why the gap that remains is so obvious.

  

Two recent events influenced this post: The first being the movement to end the use of the “R” word.  The second is hearing about someone who said she was “having an autistic day;” which I can only assume is a replacement for the “R” word.

  

Several bloggers wrote posts publicizing the movement to “Spread the Word to End the Word.”  I like the word retarded and I think it can be an appropriate description of cognitive abilities.  Thus I didn’t pay much attention.    But as I thought about it I realized that more often than the word is used appropriately, it is used to degrade and insult; much the same way I remember that people used the word “special” in high school, for example if they wanted to mock someone they would say: “she has a special spirit.”

I have a cousin with Down Syndrome and a child with special needs; I never would have dreamed of calling someone else retarded.    But occasionally I would refer to myself as retarded when I did something spectacularly dumb.  Once I worked myself past my defensiveness I realized that I wasn’t as far removed from high school students as I want to be.  As much as I choose to see “my” use of the word differently -- it really wasn’t. 

Why did I start using it and continue saying it when I knew better?  Perhaps because I heard it a lot and exposure to anything lessens its shock value.  I didn’t think about its use as much as I should have because it is acceptable, to some extent, in our society to use derogatory terms to describe people with special needs and other differences.

I’ve stopped using retarded inappropriately and even gently said something to someone who used it in front of me.  But I don’t think that eliminating one word from our vocabulary solves the overlying issue, which is societal acceptance of derogatory comments directed towards individuals with special needs.  If we eliminate the “R” word some people will use whatever replacement word is chosen as a slur.

Our society has been moving along a path of greater acceptance for diversity and special needs.  By inviting, including and valuing people with special needs to participate in society we are contributing to our progression.

   

For now I not sure if retarded should be discarded from common use. But I have stopped using it in a derogatory way and I will speak to others who continue to do so. And hopefully that will be more effective than simply ending its use would be.

Why did the Blog Storm, that Engulfed Smockity, Erupt?

When I read Smockity’s original post and her defensive first response I was really upset.  I tweeted it, I facebooked it.  I sent her an email.  I blogged about it.  And then I started reading other bloggers’ posts and doing obsessive @Smockity searches on twitter.  Why did I react like this?  Did Smockity write anything that was worse about the child she observed in the library than what people have thought about Will?

I doubt it. 

I know what people think about Will before they understand why he’s behaving inappropriately.  Actually he probably gets more compassion from the average bystander because his behavior is so obviously due to a special need.  But he still gets those looks and some people are more expressive than others.  Sometimes I take the opportunity to educate the public.  I tell the person that Will is autistic and watch as their attitude changes.  “Oh, I wasn’t upset.”  I’ve been reassured.  But I know they were before they understood.  Usually, I disregard the looks . . . but some people have a talent for slapping you in the face with a single cutting look.

I think perhaps why I was so hurt by Smockity’s post was because she was reading the Bible.  I was discouraged.  If Will wasn’t cut some slack by a person like that, who would give him the benefit of the doubt?

But I’m even more concerned about Jake.  Professionals have told me they never would have known he was once diagnosed with ASD.  If someone like Will doesn’t get any slack what chance does someone like Jake, whose disability is invisible, have for compassion?  

Smockity’s post coincided with a boy on Bri’s bus mocking Will and my emotions erupted.  I can’t protect Jake from being bullied, Bri from being hurt or William from being mocked.  And I think poor, unprepared Smockity ripped the Band-Aid off the unhealed wounds that have festered for as long as our children have been mocked and disparaged.  And I think that is why the response to Smockity was so out of proportion to what she said.  She received a mountain of stored up hurt and anger.  The fallout was immense and I apologize for my out of proportion reaction to her post.