Maddie, Emily, and Evvoon

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.

Suck it Seizures

We spent Monday down at Dartmouth having an EEG and mostly just driving back and forth.  Evie had the EEG, I did the driving, and Maxine and my Mom kept us in good company.

Evie was her usual trooper self–even though having her head/hair touched is her most disliked situation.  She is constantly being poked and prodded and examined; yet, she just keeps on keeping on with very little complaint.

So her last EEG revealed seizure activity every ten seconds or so.  So we decided to try a new medication.  The new medication is not without side effects–tremors and bruising in Evie’s case.  But….

But.

But.  It is working!

Her EEG is still abnormal (with discharges from both temporal lobes and some generalized discharges for you medical nerds).

But in the words of Dr. Holmes–it is 95% better than the last one.

Her previous state was compared to trying to work on a computer that was being unplugged every ten seconds.  Can you imagine being interrupted every ten seconds?  And still functioning?

And my girl, Evie.  She has had all of this going on and she is sweet.  She is just so sweet and cuddly.  She is extraordinarily good-natured even though she’s had her brain scrambled every which way.

At 95% better, she is the same sweet child.  But she is more connected to her world in so many ways.

This is just totally wonderful news for my little love and I am so over the moon to write this update.

spring

I love winter.  Up until the last month or so.  Then my heart, mind, and body prepare for the very best season of all.  Spring.  I am a bona-fide spring junkie.  Today was the first time this year that I got the springy dingy feeling.

I’m going to get carried away in this post.  Consider yourself warned.

Today was an unexpected delight.  After last night’s terrific thunder storms, I figured it might be kind of warm. But when I stepped outside this morning–oh my gosh.  Bliss.  And there is no better bliss than the kind that catches you off guard.

I loved seeing those super white, chubby, little legs dangling out of the first shorts of the season.  Those little that have been hiding under layers of fleece for months came out to be kissed by the sun (and mama) today.  Exposed arms and faces soaking up the natural vitamin d those bodies have been craving.

A first real exploration of the outdoors for Maxine.  Crawling around.  Do I like the feeling of grass on my knees?  Do I hate it?   Oh, right-right, I’m mama’s daughter.  I love it.  I think.  Maybe.

Evie pushing the limits of her comfort zone.  And.  Wandering into the back yard by herself.  Crouching down to squish leaves and mud.

Rebecca arching her head back to feel that honest to goodness spring breeze on her beautiful face.

Me with a permagrin watching my girls fall in love with spring.  Me falling in love with my girls falling in love.

Long walks in the stroller with Wally trotting along beside.  And sometimes in front of the stroller.  That’s a mistake Wally.

Open windows.  Ceiling fans circulating the beautiful spring air into the house and the stale winter air out.  At least that is what I picture happening.

Dirty feet.  There is nothing better than dirty feet.  There is a direct correlation between how dirty you are and how much fun you had.

Little reddish buds on all the trees waiting to burst open into that young green in just a few short weeks.

A little chipmunk darted in front of us while we were lounging on the lawn.  Like 1 foot in front of us.  Okay, well that part kind of sucked because I don’t like rodents.

But mostly today promised me so many things.  Of the long daylight hours.  Of the summer nights with trips to creamy stand–Maxine can have her first soft serve this year.  Today promised me that our world would soon be exploding with green.  That the daffodils that opened today are just the first of many flowers to come.  It promised scraped knees and bee stings and all of the rights of the rights of childhood passage.  It promised us long hours at the park.  And swimming.  Lots of swimming (I considered pulling the kiddie pool out of the cellar but vetoed myself since I was the only adult here).

We were promised the endless summer–like the ones that turned me into the insane springy ding dong loving gal that I am today.

Enjoy the spring!

waving

Today was the second day that Evelyn returned my wave from the school bus window.  I’ve been waving for nearly two school years.

Love explosions.

Isn’t it amazing how one little palm held up to the glass can make my heart soar.  How it can leave me standing in the driveway waving frantically and saying, “yes, wave.  you’re waving.  you’re awesome.  you’re waving to mama” etc.  Even though she couldn’t hear me.  I went on and on.

She left her hand against the window and a little smile touched her lips.  I think she knew that her mama was making a spectacle of herself and was amused.

After her bus was out of site and I was walking down the driveway, I realized that I had a huge grin on my face.  I love when that happens.  Not even realizing that I am smiling.  I don’t think that I used to do that before I had my girls.  Now it happens all of the time and I love it. How extraordinarily lucky am I to be so happy that I get to walk around smiling without even realizing it?

Have I mentioned lately how much I love my girls?  I am grateful for the beautiful simplicity that they have brought to my life.  I am grateful that they have boiled happiness down to a little palm pressed against the window of a bus.

the croup and the becca

Last Wednesday, Evelyn woke up with this raspy horse breathing.  I would later learn that this is called stridor and that it is the calling card of croup.  As any self-respecting Anne of Green Gables fan would be, I was petrified to hear this diagnosis.  Do you remember when Anne was just barely able to save Diana’s little sister Minnie Mae from the croup?

Well, thankfully, this turned out to be much less dramatic than Minnie Mae’s case of the croup.  Thanks, in no small part I’m sure, to modern medicine (steroids), good old fashion cold air, and nice long steam sessions.  My little barking seal actually slept pretty well for a kid with the croup.  And I know this because I slept (didn’t sleep) on the floor (hardwood) next to her bed as the doctor told me she would probably be worse at night.  He was surprised that she had such severe stridor  during the daylight hours.  I think Evelyn’s stridor was just confused because the daytime seemed far worse.

This is the dirty face of recovery.

And on a much brighter note, meet Becca.

You will be hearing about Becca in the days, months, and years to come.  She is joining our family.  We have been getting to know Becca since this past summer.  She is an amazing young woman.  One of the things that I love about Becca is that she always seems to be smiling…or just about to smile.  She has the kind of laugh that makes you stop whatever you are doing and laugh with her because it is the sound of a joyful soul spilling over with happiness.

Becca is such a wonderful and welcome addition to our family for which we are so grateful.  At least most of us are grateful–more on that in a second.  We are humbled that her lovely mom and dad have given us their trust by allowing Becca to join us in our home.  We know that trust, when it comes to one’s child, is beautiful and delicate and deserving of reverence and kid glove treatment.

So there might be one member of our family that is having some growing pains when it comes to the expansion of our family.

This is the poster child for jealousy.  Cute isn’t she?

So Maxine is taking exception to some of, (okay all of) the attention that Becca is getting.  She makes her protests known in the form of loud (fake) cries of anguish.  While I am tempted to laugh often, I remind myself that transitions are hard for everyone.  And though I think that having Becca join us is good for our family, I need to respect Maxine’s feelings and work through the tough moments with her.  Putting her in the backpack seems to be just the thing to gently ease her into the routines of our new family.

 

 

Rituals

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

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.

gaining the competitive edge

Maxine is starting to let go when she is standing up.  She has even taken a single step here and there.  In another life, I might have been tempted to push her to do things before she is ready.  But Max gets to reep the benefits of my parenting experiences with Evelyn.

So Max is somewhat on the later side to be doing things.  I’m completely at peace with this.  Max is a cautious baby.  She doesn’t do anything until she can do it with control and safety.  I believe in encouraging her when she makes the decision to work on something new.  I believe in applauding her efforts to try something new.  But I don’t like to give her the impression that my praise of her-that my love for her is contingent upon her stepping outside of what is comfortable for her.  My pride and my love are unwavering and they don’t ebb and flow with the development of new motor skills or speech.

I feel like, as a society, we put too many expectations on our children.  We expect them to live by graphs and charts and we have a tendency to panic when they aren’t keeping up with their peers.  To what end?  Maybe Max would have walked earlier had we worked on it more.  Maybe when people ask me if Max is walking “yet” (we will get to the word “yet” in a minute), I could answer yes.  But what would that have done to her little psyche?  What would that teach her?

Whenever I feel the urge to push Max to do something, I have trained myself to stop and think about my OWN motivations.  Is that chart looming in the back of my mind?  Did someone just ask me if she was doing “X yet?”  Am I having a moment where I am thinking that her not walking, not eating solids, not doing algebra “yet” is a reflection on me as a mother?  Because that’s my own problem–my own insecurities.

When Evelyn was younger, it would be like a knife in my heart every time someone asked me if she was doing “X yet.”  It was like fueling the fire burning inside of me…the fear that she was different, the fear that she wouldn’t catch up.  And as the gap between normal and Evelyn grew, that word, “yet,” became more and more piercing.  And when people would say, “don’t worry, she will catch up” a little piece of me would die and I wouldn’t know why.  I know now it is because it felt like it wouldn’t be okay with people if she didn’t catch up.  In a lot of cases it isn’t okay with people.

I never felt better when I put aside my desire for Evelyn to do things like other kids.  It was a true epiphany to know that Evelyn should do things like Evelyn and that her mama shouldn’t worry about what anyone but Evelyn can do.  And I carry this package of enlightenment with me like a little gift to myself when I might be tempted to enter either of my children into the endless competitions that they will be forced to endure throughout life.  My kids will be sitting most contests out.  We will work on playing hard and loving.  This gives us the competitive edge.

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 🙂