Tag Archives: autism

The neurodiversity fence

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Written by Beth Ryan

ONeuordiversity is not about writing pretty blog posts that appeal to the masses. It is about the human rights of people of all neurologies. It isn't about picking the parts that make you feel good. If you want to make a difference.... GET OFF THE FENCE! loveexplosions.netne of the criticisms that is most frequently hurled at me by other parents of Autistic kids is that I judge people.  I freely admit that I do.  Often.  Constantly even.

But my judgments don’t come from a place of wanting to elevate my own self esteem as so many of these criticisms imply.  I am ever engaged in judgment of what will hurt or improve my daughter’s quality of life.

I’m not perfect.  I’ve done and said and written things which I know have been hurtful to my daughter and her Autistic tribe.  One of my greatest regrets is the fact that I spent so much time fighting AAC and trying to force my child to speak.  That cost her more than I will ever know.

The other criticism I get most often is that I am “PollyAnna” about Autism.  That I want to sweep the challenges my daughter and family face under the rug.  While I choose not to publicly share details which I feel could hurt my child or family, I do not ever deny that some things are really, really hard.  But I cannot think of any obstacles that could not be overcome by a shift in the way disabled people are supported, accommodated, and spoken about.

Recently, there was a stir caused by a very popular blogger’s comment:  “I’m also going to remind you that even in the midst of all the positivity, you’re not human if you don’t have moments where you wish to god your kid didn’t have to struggle and all you want to do is tell autism to f@%k itself. That’s the secret that no one will talk about. But it’s what makes us real, and it’s okay.” 

I judge.  I judge.  Yes, I do judge.  THIS hurts my child.

And I’m judged.  I’m not “human”.  I’m not “real”.

My child is Autistic.  She IS Autism.  Telling Autism to go fuck itself….that’s telling my kid to go fuck herself.  This has never crossed my mind.  Not because I am perfect.  Not because I don’t have bad days.  Not because I don’t want things to be easier for my child in many ways.  Not just because I love my child and this thought would be a betrayal of that love.

Because my child is NOT the problem.  The problem is the way the world responds to my child.  And on the days that I struggle–the ways that I respond to my child.

Being a parent to ANY child is hard.  There are days when bedtime cannot come soon enough.  You don’t have to have an Autistic child to know that this is true.  Those are the days where I succumb to my human weaknesses.  I get frustrated.  I say the wrong thing.  I react the wrong way.  And my reactions make life harder–for my child and for me.

I’m privileged in that parenthood was a choice for me–I do realize that it is not a choice for every person.  When I decided to become a parent, I signed up for the ups and downs.  I signed up for the happiness and the heartache.  I signed up for all of it.  I’m accountable to my child.  I’m accountable to myself.

I judge people.  I do.  I also judge myself.  I’m responsible for judging myself and for doing better when I fail.

I’m responsible for creating a world in which my child can thrive.  I’m responsible for judging the things that stand in the way of my child’s quality of life.

I’ve found that this responsibility isn’t always fun.  And it certainly doesn’t win me popularity.  But we can’t make things better if we don’t talk about the things that are wrong.  I’d love to write a blog which everyone loves and celebrates.  I would love to not receive hate mail.  I’d love to not rock the boat and be friends with everyone.  I’d love it if everyone would think that I am just the bees knees.  Because it isn’t fun when what you say and write is not popularly received.

But I love my child.  And I will stand out in the cold and rain for a lifetime if it means that she is spared even a moment of facing the elements.  Not because I am strong.  Not because I am brave.  But because I’m a mother.  And that’s what mothers do.

My child is more important than stroking the egos of other parents.  Every single time.

My child is more important than my desire to feel liked.  Every single time.

My daughter doesn’t have the luxury of riding the fence.  So I’m not about to climb up and ride it at her expense.

 

Terrorist Threats

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Written by Beth Ryan

“We should talk about supports that families need. We should talk about it when there are cuts. We should talk about it when lack of services makes it difficult for us to work, to go out in the community, to perform ADLs, etc. We should talk about supports and services until our faces turn blue – but NOT in connection to murders.

When someone kills their disabled child/children and our response is “this shows that we need more services,” we as a community are taking people with disabilities hostage. The implicit threat is “give us more help or the kids die.” Saying that parents are forced to kill their children by lack of services also destigmatizes child murder and excuses the parents’ actions. The truth is that plenty of parents raise children with disabilities under all kinds of circumstances, without killing or abusing them.

Service provision is so so very important but we CANNOT use child killing as a launching platform for advocacy on this issue. It will do more harm than good.”  Zoe Gross

 

The importance of the statement above, made by Autistic activist Zoe Gross, cannot be overstated.

Image is peach graphic with light pink peace sign. The text reads: ter·ror·ism [ter-uh-riz-uhm] noun the use of violence and threats to intimidate or coerce, especially for political purposes.

On April 3rd, Robert Robinson was murdered by his mother, Angie (who also committed suicide).  Robert was 16 years old and Autistic.

The conversation following the murder centered around lack of services and sympathy for the mother.  As it always does.  I can say always because this happens with enough frequency to warrant that language.

Why are we not collectively outraged that disabled people are being held hostage by those that are making terrorist threats?

That IS, by definition, what is happening.  A politically motivated group is making threats of further violence against a vulnerable group of people.  Disabled people.

It is tempting to negotiate with terrorists.  Especially when the threats of violence are credible.  And recent history has shown these threats to be quite credible.  But we know that submitting to this type of savagery opens the door to continued–escalated even– violent coercion.  Surrendering to those that use homicide as a negotiation tactic serves to reinforce this as a viable means of political gain.

Productive conversations by peace loving people do not begin with ultimatums of brutality. Not ever.  Parents that love their disabled children do not threaten to do them harm should their demands not be met.  People that value the lives of disabled people do not sympathize with the thugs that make such threats.  Nor do they use the violence already perpetrated by other parents as blackmail to achieve their objectives.

The most compelling argument cannot be entertained when it is dictated that the rejection of said argument will result in the intentional harm of other human beings.  Scores of parents to Autistic children are engaging in this type of threat.  By doing so, they are undermining what is, in many cases, a valid plea.

ALL Autistic people need more support and accommodation.  Caregivers need different and better supports than what is currently available to most.  (I would argue that what caregivers think is needed, in most cases, is actually contrary to their objectives but that’s a whole other discussion).  However, the murder of a disabled person is not a result of the failure to meet these needs.  The murder of a disabled person by a caregiver is an intentional act of hate.  Pairing it with a suicide does not make the perpetrator  more sympathetic, more understandable, or less hateful.  Attempts to make martyrs out of those that execute or attempt to execute (as we see being done with Kelli Stapleton), is consistent with the strategies that terrorists routinely employ.

I demand that my Autistic child and her tribe be treated humanely. And though standing up for human rights and social justice is of critical importance and is central to my beliefs, I haven’t once resorted to threatening violence if my demands are not met. How ironic, then, that those actively engaging in terrorist-style ultimatums and threats, consider me to be a part of some sort of radical fringe movement. Chew on that!

 

 

 

 

#StopCombatingMe: Enough. And not Enough.

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Image Description: Black Box with white surrender flag. Text: Surrender is powerful when your war is unjust. Peace, Love, & Support for Autistic people. #stopcombatingme loveexplosions.wordpress.com

Image Description: Black Box with white surrender flag.
Text: Surrender is powerful when your war is unjust.
Peace, Love, & Support for Autistic people.
#stopcombatingme
loveexplosions.wordpress.com

Written by Beth Ryan

The Combating Atutism Act is expires this fall.  As written, it is a source of national shame..  It is, therefore, imperative that this legislation be completely overhauled.  Or it must not be renewed.

My Autistic child will always be my child.  But someday, she will be my adult child.  I regularly get grim glimpses of her future through my involvement and friendships with Autistic adults.

The vast majority of Autistic adults that I know, and I do know many, live in crushing poverty–constantly facing lack of suitable employment opportunities, deciding between heating their homes or buying food, denial of access to needed medical treatment, and so much more.   They lack the supports and accommodations that they desperately need in order to survive.

Autistic people, particularly Autistic adults, have been forever under-represented and under-served.  Our legislators have failed to incorporate input from those that Autism legislation is intended to serve–that is, of course, assuming that Autistic people are the intended beneficiaries.  It would be unthinkable to pass legislation which dismissed the advisement of the population of any other minority group that  it is intended to serve.   Not the parents/caregivers of those minority groups.  Not the big name “charities” claiming to represent the interests of Autistic people, all the while, completely excluding them from meaningful participation.  But the stakeholders themselves.

My eight year old daughter deserves a future and Autistic adults deserve a present.  They are entitled to essential supports across their lifespans.  Reallocating funding so that she, and other Autistic people, have access to education, employment opportunities,medical treatment (especially preventative medicine), etc. will serve the interests of both the Autistic community and the country as a whole.

And for the love of all things holy, rename the legislation.  Combating Autism Act?  That’s a disgrace.  It underscores the fact that the current legislation is focused on eliminating Autistic people rather than supporting them.  Using violent language to describe legislation allegedly designed to enhance the lives of Autistic people and their families is reprehensible.  It is, in effect, sanctioning the dehumanization and discrimination that Autistic people, including my child, face every single day.

Enough combating human beings.  Not nearly enough support.
#StopCombatingMe

 

scorch the earth #lovenotfear

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Image is a rust colored background. A faded puzzle piece is covered by a heart. The text reads: No more puzzle pieces. Love not Fear. loveexplosions.wordpress.com

Written by Beth Ryan
This post was written as a contribution to the “Love not Fear Flashblog” presented by Boycott Autism Speaks.

You are my child.  You are the child that I have.  And the very child that I wanted.

Your Autistic body is exquisite.
May it always respond to you.  To your will alone.
You owe your gaze to no one.
May you rest it only on that which offers you contentment.
Your flapping hands express your joy.
May they laugh at those that seek to make them table ready.

Your Autistic spirit is on fire.
May it burn bright in sight of those who would extinguish it.
You owe compliance to no one.
May you incinerate the intentions of all those who would force it.
Your worthiness of humanity is infinite.
May it ignite the blazes of love and acceptance to which you are entitled.

Every part of you is Autistic.
And I love every part of you without qualification.
There will never be a “but” after my love.
May we scorch the earth of all that endangers your selfhood.

Tone it down

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By Beth Ryan

Tone Policing.  Please stop doing that.

tone focus

Yellow background with a cartoon police officer holding his hand up. The text reads: I’m wrong. So let’s focus on your tone.

What is tone policing?
I’ve created some examples based on what I see people saying.  Often.  Too often.  Tone policing doesn’t just apply to Autism Speaks discussions.  But that’s what’s on my mind lately.

Example 1:
Person A:  Autism Speaks is a horrible organization which promotes the hatred of Autistic people.  Giving your money to them is funding a hate organization.  I am Autistic and you’re financing hatred of me.
Person B: I agree with you but people are just going to dismiss you as cranky and angry if you take that approach.  You need to gently educate people if you want them to listen to you.

Example 2:
Person A:  You shouldn’t support Autism Speaks because only 4% of its budget is used to provide direct services to Autistic people.  Autistic people are excluded from meaningfully participating in the organization as leaders and in the organizations efforts.  Further, the co-founder of Autism Speaks, Suzanne Wright, recently wrote an op-ed which promoted bigotry of Autistic people.
Person B: I agree with you but why do you need to say negative things about Autism Speaks?  Can’t you be for positive things without being against Autism Speaks?  It would be better if everyone just let all organizations do their own thing.  Concentrate on what you’re for instead of spending your time and energy on what you’re against.  You need to move on and be positive.  And stop being so angry.

Example 3:
Person A:  I can’t believe that you gave Autism Speaks money after you’ve seen all of the harm it does.  Autism Speaks is horrible.  It dehumanizes Autistic people like me.  Parents should be aware of how evil this organization is.
Person B:  You’re so angry and hostile.  I don’t want my Autistic child to be anything like you.  Why don’t you mind your own business?  Your hostility is dividing the community and if you keep acting like that, we will never be able to work together.

  • Tone policing is derailment.  It shifts attention away from the topic and content.  Often that is the objective of the person doing the tone policing because he/she is attempting to take the focus off of what he did wrong.
  • Tone policing often attempts to invalidate/diminish a valid argument because the victim is angry/emotional/passionate/negative.

Tone Policing Observations

  • I cannot think of a time when I have seen a person who is doing the tone policing also be the person who is right.  Probably because when you are actually right, you don’t have the need to shift the argument away from the topic.
  • Victims of tone policing are often the victims of oppression.  Aggressors of tone policing are often people in a position of power/privilege

You’re too angry to be right!

  • A person’s emotions–his anger, his passion, etc.  have not one thing to do with whether or not he is also correct.
  • Expecting a person who is or has been victimized to talk unemotionally about the topic of his victimization is incredibly inhuman and unreasonable.

Let’s think about the absurdity of tone policing in the context of a rape victim and rapist.

Rape Victim:  You’re a horrible person.  What you did to me is wrong.  I hope you get put in jail for the rest of your miserable life.
Rapist:  You are so angry and overly emotional.  How do you expect me to have a discussion with you when you can’t control your emotions?  We can talk about this when you’re more calm and less negative.

Can’t you be more positive, constructive, less negative, etc?

  • There is something really disingenuous and unkind about demanding that people be positive about things.  Everything is not always positive.  Demanding people frame it as such is dismissive.  Especially when we are talking about people with privilege making the demand of people without privilege.
  • Negativity is often necessary.  You cannot build an argument for why something is wrong, evil, in need of change, (a hate group) without pointing out the negative.
  • In order to be constructive, it is often necessary to be destructive first.  I cannot build a new house on a lot where a ramshackle one sits unless I deconstruct the old one. Getting a permit to demolish the old structure may require that I prove that it is not salvageable, dangerous, a public hazard, etc.

For the “you’re right but…..” crowd

  • When you agree with someone, don’t tone police them.  It is not helpful to propagate the belief that a person’s emotional state is relevant to how valid his argument.  By discussing emotion instead of addressing the issue, you are derailing.  It is possible to unintentionally derail.
  • Hearing another person speak passionately and emotionally about a topic can make us feel uncomfortable.  However, we should not expect people–especially victims of wrong-doing to take responsibility for making us feel more comfortable and advocate for change.  This is a selfish request/expectation.
  • Often, one of the reasons a person is angry is because he tried asking politely/unemotionally/whatever and was ignored.  Don’t assume that a person hasn’t already tried asking nicely.
  • Some people are unwilling to separate the anger from the content of the message. That’s unfortunate.  If you believe a person is correct, don’t add your voice to those focusing on tone because that is not helpful and only serves to lend credit to those trying to derail.
  • If you want to be helpful, encourage those perseverating on tone to address the actual argument.  Signal boosting the points of the angry person in a “nice” tone can also be effective in reaching those that are incapable of understanding the composition of an angry perspective.

Anger is effective

  • We’ve all heard about the squeaky wheel and the grease.  And it is true in many cases…especially civil rights.  Civil rights have not, historically, been granted to those that are just so darn persistent in making polite requests.
  • Angry/emotional people are typically the ones most invested in the topic.  If those people are excluded from participation on the grounds of tone/emotion, that is pretty much a guarantee of failure to effect change.  Further, it is unfair to expect those who have the most at stake to sit out because they can’t play nice.

So tone policing.  Stop it.  Okay?  And also read this post by Chavisory’s Notebook because it is better than mine.

Kelli Stapleton. Still relevant.

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Written by Beth Ryan

It was always directed toward me.  Her um anger and aggression.  Always toward me.  I wondered if that was a consequence of doing a Lovaas replication program.  Because I’ve been in her face since before she was two years old.  It was always touch your nose.  Touch the apple.  Do this.  Do that.  And you know, um, maybe this is sort of a natural consequence to that.  I’m not really sure.  But I’m sure at this point it is some sort of shaped behavior.  Because sometimes even making eye contact with her will trigger a response.  (Kelli Stapleton–full interview here)

There is no doubt that the tragedy involving Kelli Stapleton and the attempted murder of her child belongs in every single conversation around Autism “treatments”, bullying, and the way that some parents of Autistic children habitually devalue and dehumanize their children.

The fact that so many parents are still willing to make the claim that Kelli’s attempt to murder her own child is “an act of love” means that her name and the road she traveled to get to the place where she was able to harm her child needs to be brought up again and again.

We need to examine.  To scrutinize the ill fated journey that she took to get to that place.  It is uncomfortable.  It is painful.  And it is entirely necessary to talk about that heartbreaking topic.

The how and why are so very important.

The easiest answer is that there aren’t enough services.  That there aren’t enough supports for Autistic people and their families.  And while it is true that Autistic people are in desperate need of more direct services and supports, we cannot say that lack of services are to blame for Kelli’s attempt on her child’s life.  Issy had just come home from an extended stay in a residential facility and Issy had around the clock care.

So we must look elsewhere for our answers.  I believe that the answers are in the way, even as parents, we have come to see Autistic people.  Not fully human.  Not worthy of the rights and respect that most of us take for granted.

If you read Kelli’s blog, you will not think it unlike many blogs written by parents of Autistic children.  For instance, you probably would not dream of posting a video of a typical teenager at his most vulnerable moment.  But parents of Autistic children do so habitually.  When either of my children are having a challenging moment, the furthest think from my mind is snapping a picture of myself comforting her.  Or capturing a video of a meltdown.  These are sacred moments where my child needs me.  Where I am thinking, only, of making sure my child knows that I am present and loving her with my entire being.

Capturing media as fodder for one’s blog should be about the furthest thing from one’s mind.  And I don’t believe that it is with this type of parent.  The martyr mommy/daddy.  Sure they can claim that they are trying to help other parents not feel so alone…or whatever the party line is.  But even if that is true, if my belief that they are attention seeking is wrong, they are doing so at the expense of the privacy of their children.  “Helping” other parents should not override the sacred trust of a parent/child relationship.

Parents prone towards these acts of betrayal of their children are not merely poor parents.  Because the ones that I’ve seen and am speaking of are also prone towards despicable acts of emotional and verbal abuse towards Autistic adults that are brave enough to face their wrath.

This tells me that these parents have devalued, not only their children, but Autistic people in general.  This should not be exactly surprising given the culture of hate and systemic dehumanization of Autistic people that we are entrenched in.  Nonetheless, I continue to be shocked by the lengths that these parents are willing to go to viciously bully Autistic people.  They wield their advantages of the power differential in shocking and despicable ways and maintain the nerve to cry out that they are the victims of discrimination.

Discrimination is a combination of power and prejudice.  Autistic people lack power.  They are a minority group and victims of all sorts of things like media bias, systemic oppression, marginalization, etc.  Autistic people are capable of bigotry.  But they are not capable of the type of discrimination that parents of screaming about.  The continued insistence that parents are the victims is offensive and only serves to underscore the fact that these loud parents are ignorant about what it means to be part of a minority.

I wouldn’t worry so much about what these foolish parents say.  Except that they are so damn loud and aggressive.  I cannot stand the thought of their voices–the voices of murder apologists– dominating the conversation around my daughter’s neurology.  The thought that they are perpetuating the Autism Speaks’ fear and tragedy stereotypes make it impossible for me to ignore them.

And so I stand with the brave Autistic adults, who are regularly targeted and viciously attacked by this insidious tribe.  I stand with them because they are awesome and courageous and kind.  Yes.  Because they are my friends.  Yes.  But also because every single time they hang their necks out,knowing full well that they will be targeted and abused as a result, they are hanging them out for my daughter.

So I’m selfish.  And I’m grateful with every fiber of my being.  As such, it is my moral obligation–the moral obligation of every single parent of an Autistic child out there, to use our advantages to support the creation of a world where our children are seen as whole and valuable human beings.  That starts with the recognition of the fact that the assault against the humanity of any Autistic person is as good as an assault against our very children.

pacla new year

Rituals

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Negative 24.  That’s how many degrees it was this morning (with windchill) when I put Evelyn on the bus.

Three.  That’s how many minutes it takes the bus assistant to buckle Evelyn in the carseat.

Twenty.  That’s how many times I normally wave, sign I love you, blow a kiss, and repeat even when it feels like negative 24.  Evelyn (and her bus friends) watch expectantly for this every morning.

Ritual.  Routine.  Schedule.  Consistency.  All ways in which we grease the challenging parts of the autism wheel in our family.  As a historically fly by the seat of my pants, shop without a list, drive without a destination kind of girl, it takes work for me to keep pace with consistency.  Even though I see that the rhythm of consistency keeps everyone, not just Evelyn, in sync.

I am naturally inclined towards a clumsy chaotic state of being–where dishes pile up and my answer to putting away laundry is to buy more laundry baskets (we have 8).  For most of my life, I argued that I thrived in chaos.  But I must admit I was very mistaken.  I would have told you that I would rather enjoy life than worry about the dishes.  And I still don’t worry about the dishes.  I go shopping once on the weekend.  With a list.  And now I only need to go once during the week.  This frees up hours for me to enjoy life with my kids.

Ritual is a lifeboat to which she clings in the sea of life in a confusing world.  It might seem minor to you that she not get yogurt after her nap.  But Evelyn eats a yogurt every day after her nap.  And after her yogurt, we change her diaper.  After her diaper is changed we play (which does not come naturally) for an hour.  And after we play, we make dinner, we watch a sesame street and we start our night time routine.  If we don’t have yogurt, the diaper change is hell and play attempts are disastrous.   When Evelyn spends time upset during the day, which she does when we don’t have yogurt, she doesn’t sleep as well at night.  When she doesn’t sleep at night, the next day is shot.  It can take days to get back on track–this affects Evelyn–this affects our entire family. I shop with a list that includes yogurt ever week.

And I understand why Evelyn is thrown off kilter when the normal rhythms of her life are disrupted.  Daily rituals for Evelyn are like the traditions that soothe my soul.  I like certain dishes at Thanksgiving that take me back to childhood.  I like Christmas stockings stuffed with playing cards, nail clippers, mittens, and silly gifts like reindeer jugglers or books about survival in worst case scenarios.  I like the way my mom makes grilled cheese and the way my dad makes pancakes. Don’t we all have those things that make us feel as though all is right in the world?

Transitions are extra hard for Evelyn.  We try to dull their sharpness. We sing, “It’s bathy booper time, it’s bathy booper time, it’s bathy booper time,”  (to the tune of Howdy Dudey Time) because it makes the transition from Sesame Street to our night rituals less jolting.  And I say “Gentle, gentle, mama combs it gentle,” repeatedly in this weird and creepy voice while  comb through her curls in the bath tub–through which she would scream if I did not do the chant.

And after teeth are brushed, hair is dried, and bodies are snuggled into warm pajamas with feet, Evelyn and I walk to her room hand in hand.  She flops on her mattress and I repeat, “cozy, cozy warm, warm” three times with a specific cadence that Scott can’t get the hang of.  It’s, then, a kiss on that beautiful little face.  And the next words are built of loving stone.  “Night, night.  I love you.  I love being your mama.”   Those words are as much for me as they are for her because on the good days, they are reaffirming.  At the end of a difficult day, I remember that I do love being her mama.  Those words are my anchor and I always feel a sense of peace after having said them.

acceptance

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Acceptance is such a funny thing.  Knowing what to accept and what not to accept is not always clear–for any parent.

My journey to acceptance of Evelyn’s special needs has been tumultuous and emotional.  And sometimes I don’t know if I am accepting too much or not accepting enough.

When Evelyn first started showing signs of physical developmental delays at a couple of months age, I wrote them off to mere differences in development.  Over time, although it became more clear that her differences were of a more significant nature.  But I tricked myself into believing that she was just moving at her own pace–which she was—but I couldn’t (maybe wouldn’t) wrap my mind around a permanent disability.

Let me back up.  Up until my pregnancy with Evelyn, I’ve had a pretty easy life.  I have wonderful parents who have always supported me.  I’ve always felt loved.  I never really worried about anyone because for the most part the people that I loved were healthy.  I would say now that I had an unreasonable faith that everything would always be okay–that my life would work out the way that I had expected it to.

Before Evelyn had an MRI at two years old, there was a round of really scary genetic tests.  She had been diagnosed with hypotonia (which means low muscle tone) but they didn’t know what caused it.  So there were a slew of different degenerative diseases for which they tested over the course of a year.  During that year, I stayed up late every single night googling, and googling, and googling.  What I read was not reassuring.  I lived in fear.  Finally Evelyn had an MRI at age two which revealed a brain malformation in her cerebellum.  They believed that this explained everything that she was experiencing, that she would always have low muscle tone, but that she would progress typically otherwise.

So I breathed easy for a while…we lived, we loved, we did our thing.  When Evelyn was almost three, she pretty much stopped talking and started having absence seizures constantly.  Enter a new reign of fear.  The neurologists and geneticists went into another tizzy and I think I was even more scared than I’d been the first time since so many signs pointed to a degenerative disease.

There is nothing that I can compare to worrying that your child may suffer and die.  Those words are so hard to type.  It is almost unbearable for me–for any parent–to consider these possibilities for my child.

So when the blood tests, the mris, the spinal tap, the halter monitors, and all of that other stuff were exhausted, we were left with autism to explain the regression.  And autism was a huge relief.

I embraced autism.  I wrapped my mind and heart around autism.  I accepted autism as part of Evie’s fate.  And it wasn’t devastating.  I moved forward with optimism.

Acceptance comes at different times.  Scott was slower to accept what autism might (likely will) mean for Evie.  Shortly after her diagnosis, I remember that he made a comment about her “catching up” developmentally.  Even though I gently push him towards reality, often, I don’t believe that he has fully accepted what autism means in our family.  I think it has to do with the fact that he didn’t spend time considering the horrible degenerative diseases that were on the table.  So he didn’t feel that sense of relief that washed over me when we heard, “autism.”

Last week, he mentioned that a coworker had asked him how severe Evelyn’s autism is.  He told him that Evelyn is high functioning.  I admit that I laughed because Evelyn doesn’t have speech, she isn’t toilet trained, she doesn’t have self care skills, etc.  She certainly wouldn’t be labeled high functioning by anyone else.  But it is touching, to me, that her daddy labels her as such–because she laughs, because she loves, because she has a sense of humor, because she has a temper, because we have a family language, because Evie “functions” just fine in his eyes.  And I love him for that.

Every time my husband reads one of my blog posts he cries because he is reminded of the fact that Evelyn’s delays and differences from a typically developping are truly profound.  Part of me wants him to embrace the probabilities, but another part of me sees the benefits of accepting nothing as an absolute and everything as a possibility.  Afterall, it makes me crazy that some of the people that work with Evelyn seem to have written off the possibility of her making gains with speach. Why should I feel the need to tell Scott that it is probable that Evelyn will never live alone?

My acceptance is different than Scott’s.  I don’t know which–if either is better.  I take life day by day.  I don’t plan what Evelyn will or will not be able to do.  I’m happy with any fate where my daughter is happy and healthy.  Scott doesn’t have higher hopes for Evelyn as what could be considered a higher aspiration than health and happiness?  But he definitely feels like Evelyn will make more significant developmental progress than I think is likely.

Where do you strike that balance between not allowing our hypotheses turn into limitations and dealing with things realistically?  Because both are essential.

Either way, both Scott and I accept that this isn’t what we expected or planned.  We are both surprised that it is, actually, far better than what we expected.  And while we might disagree about how things are likely to pan out in terms of our future as a family, we agree that health and happiness are our only objectives.  And I think we both have learned that happiness doesn’t live in our expectations for our family–but in our family itself.

autism in our family weekly

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I don’t always know what Evelyn is thinking.  As I sit here listening to Evelyn laugh uncontrollably at a skit on Sesame Street, my heart does those little flipper floppers that I call love explosions.  I don’t know why this particular skit is so amusing to her.  And she can’t tell me with words.  And while it is enough–will always be enough–to know that Evelyn is happy at this moment, we certainly work towards finding different ways to connect with Evelyn.

If you have a typically developping child, you might notice that when she laughs, she wants to share that laughter with you or others.  She makes eye contact, she points, she tries to draw you into whatever is inducing those delicious giggles.  Evelyn very seldom does this.  When she is laughing at something, she is her own world and she doesn’t want (or not want) to share that moment with others in most cases.  Recently, I learned what I’ve noticed for the past couple of years has a term.  Joint attention.

While I work on joint attention with Evie, I have to remember to respect that we are both wonderfully unique people.  I don’t try to drag her into my neuro typical plane of thought.  I try to go to hers.  Sometimes I sit back and observe and make mental notes as to what might be amusing Evelyn–movement, color, sound, texture?  Usually, it is a mystery.  But sometimes we will notice a trend.  For instance, Evelyn seems to get her giggle on when watching rapid movement particularly on TV.  And those breakthroughs are wonderful because it gives me a point from which to start.  I can show her other things that she might think are funny.  And those moments that she looks me in the eye and laughs are indescribable because she knows that I am, for a second, laughing with her in her world.

More often, I don’t figure it out and I don’t get it.  And while your first instinct might be to think about how frustrating that might be for me, I ask you to think about Evelyn and thousands of people like her.  Thousands of people that we ask, everyday, to live in a world that they don’t understand.  We ask them to live in the ways that we live.  We ask them to interact in the ways that we interact.  We ask them to play by our rules everyday with very little thought as to what that might feel like.  I say we “ask” them but what I really should say is that we expect them.

Think of the thing that makes you crazy, nauseous, wanting to crawl out of your skin.  For me, that is nails on a chalkboard or scratching anything in general.  I go beserk.  My mother is forever scratching at things and she doesn’t understand when I go bolistic.  I have to imagine that this is how Evie lives almost every single minute of the day.

The next time you see a kid in the grocery store–with autism or not—that is screaming or throwing a fit.  I hope your first instinct will not be to judge the child as poorly behaved or judge the parent as subpar.  I ask you to consider that the lights in the grocery store are super bright.  That there are so many people, things, sounds, and smells that are stimulating–over stimulating.  That child might be experiencing a nails on the chalkboard moment.  If that child has autism, many moments of the day may be nails on the chalkboard moments.

As a mother, I am compelled to try to blend the sharp edges of my world and Evelyn’s world so that we can both function, live, love and laugh.  So that we can delight in the moments where we are able to bridge the gap between our worlds.  So that our eyes can meet and for a second we have clarity and understanding.  As a mother of a child with autism, I appeal to you as a human being.  It would be great if you could dip your toes in the waters of her world–to see the humor in the world as she sees it, to see the obstacles in the world that she faces.  I understand if you can’t find your way to her world.  But could you, pretty please, remember that she is living in a nails on the chalkboard world and that she may not be able to cope with that every second of everyday…and if you can muster it–Respect.  Respect that she brave and graceful in her ability to live outside of her comfort zone almost every single moment of her life.

autism in our family

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Before Evelyn was born, one of the worst things I could fathom for my child was autism.  I feared it.  Maybe it was some sort of premonition.  Most likely, it was just a reaction to the increase in attention it got.  I really didn’t have any sort of understanding of it.

Ironically, by the time Evie was diagnosed with autism, I was BEGGING the universe to please let it just be autism.  Let it be autism and not one of the degenerative diseases for which they were also testing.  “Let it be autism,”  I thought so often.  “I can deal with autism.”  And the diagnosis of autism was more than a relief.  It was the end of the terror of not knowing.  The gripping fear that there was some horrible disease slowly stealing my daughter from me.  And it was the beginning of another journey.  An opportunity to open my eyes.  An opportunity to understand that different doesn’t mean better and doesn’t mean worse.

Evelyn pretty much stopped talking just before her third birthday.  She stopped smiling.  She went completely flat.  Although we welcomed her smiles back about a year later, she doesn’t use her voice to speak.

But don’t think for a second that Evie doesn’t speak.  She makes her needs and wants well known.  And don’t feel sorry for me because you think Evelyn doesn’t tell me she loves me because she does every time she climbs into my lap, cuddles, and hugs me.  And she does this often.  As I often tell my husband, love isn’t what you say.  It is what you do.

Don’t get me wrong.  Autism, for us, isn’t all cuddles and hugs.  There is also the racing Evie to the bathroom door that a guest mistakenly left open.  Evie is sensory seeking.  And one of the ways this manifests itself is Evie’s obsession in submerging herself in water.  That includes the toilet bowl.  My skin still crawls when I think about the time that happened…it really only takes one time before you make sure that never happens again.  Shudder.

I know that autism doesn’t look the same for everyone.  But this is part of what it looks like in our family.  As we continue on our journey, I am going to try to write a post a week about autism or living with a child that has special needs.

Thanks for reading 🙂