acceptance

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

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

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 🙂

I know

Evelyn is four.  You no longer tell me that she is a late bloomer or that she will catch up.  You know that I don’t believe that you believe that.  Evelyn has special needs.  You know that.  Her special needs make you uncomfortable even though you do your best to pretend that they don’t.  It pains you to know that I know that you are feeling uncomfortable.  Your words are bright and tend to avoid the topic of Evelyn.  But your eyes tell me that you feel sorry for Evelyn.  You feel sorry for me.  What you don’t say, says so much.

I am not criticizing you.  I know the awkwardness that you feel is born out of compassion.  It is born out of your desire to be polite.  You’re silent because you don’t want to say the wrong thing and you don’t know what the wrong thing is.  You have questions that die on your lips because you don’t want to hurt my feelings.

You picture my life, Evelyn’s life, the life of our entire family one way.  But really it is another way entirely.

You see Evelyn as her disability–she IS autistic, she IS non verbal, she IS developmentally delayed, etc.  I see Evelyn as my child that HAS autism, developmental disabilites, etc.  What is so hard for you and so easy for me to see is Evelyn.

You don’t see that Evelyn has a great sense of humor, that she cuddles in and gives the best hugs.  You don’t know that Evelyn has a personality that is so much bigger than her disability because it is so hard to see around a person’s disability unless you’re really looking.  You’re focusing on all the ways that Evelyn is different than your child–different than you.  You see all the things that she is not doing.  And sometimes I see those things too.  And sometimes, yes, there is a voice in my head that wonders what could have been.  But I tell that voice to zip it because oh my goodness…look who Evelyn IS!  Look at the wonderful things Evelyn is doing!  And this might be hard for you to believe.  But it is true.  I don’t want that hypothetical Evelyn.  I want THIS Evelyn.  The one I love everyday.  I want this Evelyn–exactly the way she is.  Disabilities and all.  I want this Evelyn–the one that loves to sit in my lap and cracks up laughing for no reason.  If you weren’t afraid to get to know Evelyn, you would see how very wonderful the real Evelyn is to know.

And while you are getting to know Evelyn, it would dawn on you that our life isn’t anything like what you thought it is.   Sure, we spend more time in doctors’ offices, at therapy, etc. than the average family.  And yes, we have challenges unique to our family.  But at the end of the day, we are just another family doing the best we can to love each other the best we can.  Our life does not center around Evelyn’s disability.  We don’t mourn Evelyn’s disability.  We don’t ignore it or pretend that Evelyn is just like everyone else.  Evelyn and her disabilities are a wonderful part of our family–and I stress “part” because there is much more to us than Evelyn and her disabilities.

The only thing you can do to hurt our feelings is assume that we wish Evelyn was different–to assume that Evelyn isn’t everything we ever wanted in a daughter.  Sure she isn’t what we expected but sooner or later all parents realize that children almost never are. and we love our children for the very unexpected people they turn out to be.  So ask us anything.    And please don’t feel mortified when your children ask those blunt and honest questions that only children ask, like,”why doesn’t she talk?”  Kids have to understand Evelyn in order to try to include her–just like adults need to understand our family in order to include us.   Although we understand it, there is nothing worse than being pitied and/or avoided.

We know that we aren’t going to be around forever and we are desperately trying to carve out a space for Evelyn in a world that aknowledges and appreciates her as an individual that happens to have disabilities not just a disabled person.