Category Archives: autism

Autism: a tragedy

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

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

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

I chose to isolate myself from those communities.

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

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

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

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

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

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

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

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

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

Wait, Evie is not Autistic?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

SOME of what it takes to care for Evie

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

the cost of compliance is unreasonable

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

I had just read this blog entry

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

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

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

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

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

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

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

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

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

Now I get it.

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

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

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

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

I’m getting seriously pissed off writing this.

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

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

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

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

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

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

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

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

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

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

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

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

But what?

 

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retard time…again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

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

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I’m struggling with Evie’s autism lately.

And yes, I’m angry.

Angry with the people that have a singular focus.

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

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

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

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

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

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

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

I know how to make my child smile.

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

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

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

I am on team Evie.  And only team Evie.

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

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

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

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

Everything else can take a back seat to that.

 

Slow

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Slow is beautiful.

In the morning Evie gets up slowly.  She gradually tests her voice with a series of little contented moans that build in intensity.  Build into happy shrieks.

I listen on the monitor and go to her when I hear those little shrieks.  I open the door and say, “Good morning Evie.”  She is always sitting up on her bed with her legs extended straight out in front of her.  She squints as the light from the hallways creeps into her room and her pupils slowly adjust.

When I sit on her bed she smiles and hugs me.  I lift her body up.  Because of her low tone, she melts into my body.  Hypotonia has its perks.  For a blissful moment, I don’t know where I end and she begins.  It is one of my favorite moments of the day.

I carry her downstairs and our morning ritual ambles along.

She eats her breakfast slowly.  In courses.

Her face and hands are sticky from pears as she climbs in and out of my lap.

She gets up early.  Some would cringe at the hour that she rises.  But I have come to love our morning routine.  We don’t have to hurry because the hours until I drive her to school stretch out before us with comfortable sameness.  The predictability of knowing what comes next.  But being in no hurry to transition.

From Evie, I have learned to slow down.  To savor the moment.  The many ways in which Evie is different from typically developing children is especially apparent in the morning.

She offers me her, still open-mouthed, kisses in abundance.  Uncharacteristic of her age.  But wonderfully characteristic of my girl.

In the morning we are fluent in the same language.  For a few short hours, I can live entirely in her world.  Speaking little.  Communicating in hugs, kisses, and cuddles.  Almost every morning, I have a fleeting thought of keeping Evie out of school to feast on our synchronicity.  But while Evie doesn’t speed up much as the day progresses, I must return to my world of fast moving.

So I don’t indulge that tug I feel to linger there with Evie.  Where nothing is as important as a morning snuggle or a juicy pear.  Where deadlines and appointments don’t exist.  Where fast and competitive cease to be.  Where just being is splendid.  And where you never have to steal a kiss because open-mouthed smooches are dealt out freely and without restraint–even when you’re five going on six.

 

Maddie, Emily, and Evvoon

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I’ve been wanting to blog something so meaningful to me for a while.  Evie doesn’t bring home pictures she has drawn from school.  She doesn’t tell me about her day.  But about a month ago, this card from Maddie came home in Evie’s folder.  Call me sentimental but I will cherish this until the day I die.

This tells me everything about what Evie is doing at school. She is connecting with people. She is making friends.  She is learning the very best thing there is to learn.

I’ve underestimated my child and I’ve underestimated her peers.  I’ve never been so beautifully and wonderfully wrong in all of my life.

You see, we love Evie so very much.  But I was too afraid to hope that her young classmates would be able to see past her disabilities.  I couldn’t imagine them putting in an effort to try to connect with Evie when Evie connects in a way that is so foreign to most.

Evie can’t keep up physically.  She doesn’t speak.  She rarely makes eye contact.  She’s been known to steal food from peers.  And she occasionally bites.  That’s a lot to swallow for a five year old.  But these kids reach out to my daughter.  They reach across all of the differences and the obstacles and they find a way to be a friend to my daughter.

And it is not just Maddie.  I’ve been dropping Evie off at school for a little while now.  Almost everyday, a young girl named Emily meets Evie.  Her eyes honest to goodness light up when she sees Evelyn.  My eyes honest to goodness fill up with tears and I get that gulpy-holding back the cry feeling in my throat.  Yes, every day I get a little heart lift from seeing this exchange.  And every day I fight the urge to hug Emily and cover her face in my tears and kisses.  This would be frowned upon by admin and Emily alike, I would venture to guess.

I’m learning to expect the very best there is from children.  Evie’s friendships give me hope for her future, they give me hope for our family, and in a really sappy maybe-overreaching-but-I-don’t-think-so way, they give me hope for humanity.  Her friendships remind me to look for the best in people and to try to find common ground–even if they bite.  We can still love people that do things that we don’t like–stealing snacks or otherwise.   Okay, don’t worry.  Quashing my urge to go all peace monger on you and will just say that we all could learn a lot from kindergarten kids.

Retard

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I’ve never thought it was okay to say the word “retarded” in a derogatory way.  It bothered my long before I was ever holding Evelyn in my arms.  But now it carries an extra little kick to my heart.  It shocks me to hear/see so many of my friends casually throwing this word around.

I’m making this personal.  Evelyn has an intellectual disability.  When you use the word “retard” or “retarded” in a derogatory way, you further exclude her.  You tell her, you tell me, that she is not accepted.  The word has become a description for negativity.  A description for something flawed.   It is a hateful word.  You spread hate.  You hurt my Evelyn.  You hurt me.  You hurt your children.  You hurt our beautiful world and all of the beautiful people in it.

I hear people say things like, “you’re being overly sensitive” or “people are too PC” when they are called on the carpet for using this slur.  What does that even mean?  Too sensitive?  Too PC?  How can we associate attempts not to offend other human beings with negativity?  If you would rather hurt my child than stop using “retard” that is certainly your right.  But your attempt to pass it off as some sort of stand is a miserable failure.

Why should our desire to use a word be stronger than our humanity?  Is our vocabulary really so limited that we just can’t drop a word from it?  A word that hurts and some of the most vulnerable members of our world?  A word that deeply hurts me.  My family.  My beautiful daughter.

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.