Hello Summertime. I've Missed You.

It's not officially summer but it certainly feels that way.  This all began a few days ago when the humidity made its heavy way to Tennessee and settled in for sticky, bug-biting, lovely long summer days.  

I do love the seasons.  I love how perfectly and strangely and distinctly different they are.  This is something I have come to appreciate more and more.  Except spring.  Spring is a huge transition for me.  Coming out of the winter gray into chirpy green and blue days.  It's just too much.  My pasty skin practically blinding in the tell-all light of spring.  Then the time change comes along and messes practically everything up; your kids' sleeping, your own sleeping, light.  Suddenly there's too much light.  Wait, what am I supposed to do with all this daytime? Getting cozy on the couch with popcorn and the remote seems wrong.  Lazy.  I should be outside...pulling weeds or some other spring-like task. Spring requires too much.  Okay, like I said, I'm in the process of appreciating all the seasons.  

It's sticky and hot and Friday.  It's a good day.  We had a follow up meeting with the school yesterday.  It went well and I feel like we came to a fair compromise.  But today I feel like everything has been completely drained out of me.  Sucked out of every pore.  I guess I was running on adrenaline.  For more than a week, it kept me going.  Fighting for your kid requires a mental strength that you don't even know you possess.  But you do and you always have.  Ever since you became a mom.  I think it is a gift we are given with the birth of a child.   Superhuman mommy strength!

I'm so glad the meeting went well but I feel as if  I've been studying for a big test and it's finally over.  I've taken it.  Now I don't want to see the book; I don't want to see the teacher.  I don't even want to be happy that it's over because that would involve me thinking about it.  Right now I can't think of it.  I can't talk about it.  

I'm glad it's summer.  Pre-summer summer.  Carefree and flip-floppin'.  Summer always reminds me of orange sherbet.  Whenever we visited my grandparents in the summer we got orange sherbet after dinner.  More exciting than you even know.  Anyway, summer also reminds me of the whippoorwills of my childhood.  The sherbet was the city treat.  The whippoorwills were every night of my youth.  Their long hauntingly beautiful calls, their timing perfect, as twilight turns to the fallen night.  

I'll get on with enjoying the summer and doing summer-like activities.  But right now I'm diffusing.  My fight-or-flight-reaction was strong but now I am weak.  Excuse me while I go get cozy on the couch with popcorn and junior mints.  Even while daylight still exists.  It's dark somewhere.  

Baldy

Chris has had some time off work.  Not to go anywhere, just to use up vacation days.  After the first day or so beyond the length of time he would normally be home, it becomes a little awkward.  It's like we're in some sort of family time capsule where there is no day of the week. "Today is Monday? No, wait, it's Tuesday."  We start to overlap each other on duties and then end up not doing them at all.  "Did you give Louie his medicine this morning?"  No.  The answer is no.  No one gave him his medicine. It's similar to those dreams you have where you wonder if maybe it wasn't a dream at all because it was so normal. Like a dream about running errands, getting your oil changed,  going to the cleaners.  

This time with Chris lurking around the house begins in a haze of confusion but ends with that day-after-Christmas feeling when he goes back. We finally get in the flow and start operating as a team; one of us cooks while the other bathes the boys;  Chris folds the laundry and I put it away; I clean up the toys while Chris pours Louie's milk; we go out to lunch; play in the backyard.  We're grooving.  A finely-oiled family machine.  Conversation increases in both frequency and quality. We have time to discuss the nuances of day beds versus pullout couches. I tell him about a woman I overheard talking loudly on her cell phone in Target about how her insurance won't cover her hysterectomy (is nothing private? Nothing?).  Anyway, point is, we have had a lot more time for both meaningful and silly conversation.  It's been nice.  

During one of his days off he got a haircut.  The salon is fairly open so the customers and stylists are all crammed together.  A fifteen-year-old with hair to her waist sat next to him with two or three stylists working together to try to comb out the massive head of  hair.  Chris commented "Looks like you've got some dreads going on there."  She looked at him and said "Whatever, baldy."  As in "You are a balding-thirty-something-man who needs to mind his own business."  Poor Chris.  As if this isn't something he already worries about.  

And so this sparks a conversation between us about the insults we endured as kids.  "Kids called me egghead...man, that stuff sticks with you, " he tells me.  I try to relate but have a hard time.  Either I've completely blocked it all out or it didn't happen to me.  Not because I was super popular or anything but just because my school was small, redneck, rural and poor and we were all pretty much in the same boat.  The only thing I can recall is in middle school when my friends made fun of me because my butt wiggled when I walked.  So I tried my best to walk so that my butt would not move at all.  Difficult.  Very, very difficult.  "Is that all you got?  I've been hearing about that butt thing for years."  It's all I got.  Sorry.  

Which led us to the "I want to keep my child locked in his room forever" conversation.  Every parent has had this thought at one time or another.   This feeling, this innate quality we have as parents, is full of so much pain and so much pure and simple love.  Protection.  We want to protect them from the hurt that we experienced.  From the hurt that we know they may experience because of the way they walk, the clothes they wear - or don't, the shape of their beautiful, oblong head.  Kids can be mean to one another.  They pick out the most permanent detail to exploit, the detail the child can't change like the color of their skin, the way they talk, the size of their nose.  

But I try to tell myself and Chris, that there are also the children who are kind.  Who you lie next to at sleep-overs and giggle until the sun rises.  There are the kids who share their lunch, who help you with math problems, who hold you tightly when your first love breaks your heart. And who wants to miss out on those kids? 

Chris goes back to work tomorrow.  He's out fishing now.  Enjoying the sunset, calm waters and the first fireflies of the year.  He needs that time.  That perspective.  That space.  We all do.  But I would speculate that he doesn't put it all out of his mind.  That as he casts his rod into the smooth lake water he wonders how he can protect his boys while letting them go at the same time.  

I Wish.

Louie has a diagnosis for autism as well as Williams syndrome.  We don't know for sure that he has autism because there has been some disagreement among doctors.  But the diagnosis has allowed us more services through our early intervention program.  It's interesting because sometimes it feels more like Louie has autism than Williams syndrome.  I thought the dual diagnosis would help us receive more services in the public school system as well.  But that is yet to be seen.

Louie's first IEP meeting was held yesterday.  And so it begins.  I had hoped for more.  For more understanding and less resistance.  Louie deserves extended school year services.  He meets all the criteria.  They denied my request, ignored my proof of regression and wouldn't provide their denial to me in writing.  So now here I am.  Wondering and wishing and not knowing.

I wish I didn't have to do this whole IEP, special education, therapy, make-sure-everything-is-documented-or-it-wasn't-said thing.  I wish it were simpler and our children were given exactly what the law says they should get.  Sounds simple but its complexities already make my head fuzzy.  I don't know what to fight for and what to let slide.  I don't want to start my relationship with the school off on a sour note but I want Louie to have every opportunity available to him. Louie simply doesn't have the opportunities most of us are given just by being born. Opportunities to start, to fail, to begin again, to make choices, to drive our cars fast on a summer night with all the windows down.  

I sat on my patio last night and realized again what it means to be an advocate.  It's not a matter of being right or who's pocket the money comes out of or revenge for the school's lack of, ummm...charisma. It's a matter of human rights.  It's a matter of society's responsibility to care for those who cannot care for themselves.   It's a matter of taking the strengths that Louie has and making them mean something.  It's up to us to shape those strengths and mold them into assets that will give Louie opportunity.  Isn't that what's it's about?  Opportunity?  Hope?  A future?

I want Louie to do the things that other 3 years olds are doing.  But he isn't and he won't.  I still sometimes find myself thinking "Well, when he learns to fill-in-the-blank, then he will be close to catching up."  And then gravity takes hold and the weight of the truth bears down on my disillusion.  He won't catch up.  He will never catch up.  So our goals and dreams for Louie need to be adjusted. 

What I want is for him to learn life skills.  The skills that come naturally to most of us; the ability to feed ourselves, brush our teeth, get dressed, shave, balance a checkbook.  I want Louie to be able to do these things.  Maybe this is obvious and something most other moms of kids with special needs have already realized but it just crystallized for me.  My goal for Louie is that he is able to have some sort of independence as an adult.  

Louie may not ever talk.  This has only been a passing thought in the past, quickly dismissed and ordered out, but this time it has taken a seat.  It's a real possibility.  I am not trying to be dramatic or negative.  Nor am I overreacting.  I just know too much now.  Louie's vocalizations have not really changed since he began vocalizing at 6 months or so.  He rarely babbles any consonents and his expressive communication, including gestures and signing, is little to none. There is a window of time for a child to learn to talk.  After it closes, it's rare speech will develop.  Especially conversational speech.  That window is not yet closed for Louie.  And in my mind, the window will never close completely.  But Louie may never talk and I must begin to prepare myself for that possibility.  

Ace, nine months, has almost surpassed Louie in every developmental area.  I guess that's why I have a hard time with the public school saying no to our requests.  No to a 3 year old who doesn't walk independently, talk or possess any self-help skills.  What more do they want?  I can't imagine.  I'm not asking for the world from them.  But I am asking for the world for Louie. Does that make sense?

I wish, I wish, I wish right now.  I wish I knew someone who has been exactly where I am. Someone who sat on their patio and wondered why the line between compromise and complacency is such a faint one.  I wish I had my degree in special education and law.  I wish Louie would say "mama."  I wish I knew how to prepare to raise a child who doesn't speak. 

Most of all, I wish Louie could run in the school office and say "Hey, principal!  I don't need your so-called stinkin' special education!" and then he would bound quickly out the door, out to the playground where he would kick the ball causing a cloud of dust to hazily rise up into the afternoon light, the rest of the kids, his friends, would laugh and run toward the rolling ball.  I wish that's what Louie could do.  

One Year Out: Reflections on Losing a Child

Joyce Heil, our pediatrician's wife, recently shared this essay with me.  It touched me deeply and gave me strength at a time when I needed it. She gave me permission to post it on my blog.  I thought many of you could relate and possibly, after reading it, take away some of her wisdom and lovely perspective on raising a child with a disability.  She wrote this a year after their daughter Jillian passed away.  She had Rett syndrome.  

One Year Out:  Reflections on Losing a Child

By Joyce Heil

We lost our eleven year old daughter, Jillian, a year ago.  She had a viral infection and suddenly her heart developed an arrhythmia that doctors could not fix.  While her death was sudden and unexpected, she was at risk for premature death because of her disabilities.  

Jillian has two older brothers, now 15 and 14, and a younger sister age 6.  I would like to share with you a few aspects of our journey this past year.  

Most people feel the loss of a child is catastrophic.  And it is.  But we lost a lot of our daughter years ago when she regressed in her development as a baby.  There were so many losses along the way as she missed milestones, lost what ground she had, and suffered the distorting of her body.  We tried as a family to look at those losses in the face and grieve them, at the same time receiving who she was and the gift that she was.  This year has been a continuation in that path of grieving and rejoicing that began with her diagnosis.  

As you all know well, caring for a disabled person is challenging:  anticipating needs for someone who cannot tell you, managing the medical treatments for a complicated patient, balancing the needs of this child with the rest of your family and your own life.  These are hard things.  We have seen since Jillian is gone, how she called us to a place of unselfishness that was good for us as individuals  and as a family.  Having someone around you who constantly demands that you think outside of yourself is truly a gift.  After Jillian died, my then 13 year old son said, "Mom, I don't think we get along as well as we did when Jillian was with us."  And he was right.  Jillian called us to a higher place.  

Similarly, we recently took our first big family vacation without Jillian.  We flew to southern California for a family reunion.  I don't know about you, but when we traveled with Jillian, we had to really function well as a family just to survive!  My husband and I had to work as a team.  The boys had to help push the wheelchair or corral their younger sister.  Everyone had a job.  Now it is easier.  The boys can listen to their music, Paul can nap, I can read, but we are at risk for being short with each other, self-absorbed and independent.  Now, we had to fight to be a team even though the trip was so much easier.  And we were not Jillians' ambassadors anymore.  We were just a regular family.  It is not bad to be a regular family, but I missed what Jillian called out in others as we pushed her chair.  She brought out the best in people, in us and those we met.  

I miss Jillian's smell.  I miss her soft hands, her furtive glances, her smile given when least expected.  I miss her simply being present.  

She taught me that suffering is wretched and that wretchedness must be faced.  But even when we want to run away so bad, brokenness brings a kind of life on this earth nothing else can.  I don't know how you feel about heaven, but one day my body and mind will be broken, too.  And I think she will be waiting to greet me.  I'm excited about that day.  

The work that you do, the caregiving you offer, the tears you shed, the love and joy you give and receive on your journey with these children is some of the most important and transforming work on the planet.  

Sophisticated Palate

Ace is a good eater.  It's refreshing.  He has not yet met a food he doesn't like.  However, having said that, "What does he have in his mouth?" is the big question  around here lately. As Ace has become mobile, he has made it his mission to point out how poorly I vacuum by finding all kinds of crazy things on the floor to put in his mouth.  See photo above where is scavenging like a puppy under Louie's high chair.  

Let's see.  Things I've fished out of Ace's mouth over the past month.  A piece of black rubber.  Um mm...yeah, I have no idea.  He somehow found it on our black and brown rug.  He has some kind of baby superpower vision that no one bothered to tell me about.  3 raisins in mouth and one in each hand; again, found on a black and brown, raisin-colored rug. The tip of a balloon.  I know, I know, yet another choking hazard.  An absurd number of leaves and those little pod things that fall from trees.  Paper.  Lots and lots of paper.  Lint balls and dust bunnies galore.  Chips of wood.  Seriously, come on!  Wood chips?  I am not making this up.  And no, we don't have a wood burning stove or a fireplace.  One was about an inch and a half long and knife-like.  While I may not be the best at vacuuming, I'm not that bad.  Where does this stuff come from?  I want to know!  And the icing on the whole big pile of random things to be found on the floor...a dead bug.  "What's he got in his mouth?" I ask as I place him flat on the floor and finger sweep his mouth.  Out comes a wing.  Finger sweep, avoid teeth. A crispy brown body.  Finger sweep, ouch, he bit me! Then another wing and legs.  Another leg.  "Ace, don't eat bugs!"  

His personality is getting bigger.  It's fun watching it grow.  And stay the same.  Babies seem to be born with an essence,  inherently and completely theirs. Their soul?  Their spirit?  I don't know exactly what it is but you can see it in every newborn's face.  

Ace is changing every day.  Each stage is new and different and exciting.  However, I know there is something about him that will remain the same. Yes, he will change and grow, change and grow.  Eating bugs and table scraps today, sushi and Starbucks tomorrow. But no matter how old he is, as his mother, I will always be able to see what has not changed; what has been there since the day he was born.  

To all the mothers - Happy Mother's Day!  Sending my love to you all.  You are amazing.

One Way Ticket to the One Way Sign

Louie loves a one way sign.  This is in no way sarcasm or joking.  When I open the front door he wants to book it out the door and down the sidewalk.  Now, when I say "book it", I mean the fast crawl.  On concrete.  Doesn't that hurt?  Seems like it would be an incredible incentive to walk but...I digress.  

I have always just assumed that he remembered the way to the school's playground located behind our house and that's where he wanted to go.  What kid doesn't want to go to the playground any chance he gets? One day I took his hand and followed his lead.  Down the sidewalk to street where you would turn left to continue on to the school, he stops, crawls over to the sign, pulls up on the sign and pretty much looks like the happiest kid I've ever seen.  Glowing happy.  Pure joy happy.  He looks at one side, then the other, amazed that it says the same thing on both sides. So be it.  We make trips down to the sign every few days now.  Sometimes just he and I, sometimes with the therapist, sometimes the whole family.  This gives a whole new meaning to "I wonder what the neighbors will think."  

Isn't it all about expectations?  I would expect Louie would want to go to the playground.  I would not expect Louie to fall in love with a one way sign.  Or that he would love microwaves or mailboxes.  Most kids love playgrounds.  Mine just happens to love street signs.