Who Said Parenting is Easy?

It was with great heartache this morning that I sent my child back to a school that quite obviously does not want him.  He does not fit their norm and they don't know what to do with him.  They have literally set him aside (inside the classroom and out), apart from the rest of the students.  He sits in the back where they can do their very best to pretend he isn't there (although, as loud as he is, I don't know how that is possible!).  The other students don't want to play with him or sit with him during lunch.  So, we're leaving him in school to socialize him but no one will have anything to do with him?  My husband worries how 'yanking' him from school will affect him years from now.  I worry how leaving him in a school where even the teachers ostracize him affects his self esteem and other aspects of his personality now (and later in life).   We asked him how he feels about the school and he told us, "It's not that bad.  It's better than (the public school he went to).  I'll be okay."  That made it hurt even more; my 'drama queen,' who makes mountains out of molehills, was downplaying things to make it easier on me.  Hearing that a teenager in our church killed himself last week hit me hard and my heart hurts so much for his mom.  No parent should ever have to bury her child under any circumstances.  The thing is, when I think about Noah's future, that is something I worry about.  He has been bullied since kindergarten and he thinks that's just how things are.   Shawn and I try to teach him differently, but until people start treating him better, he won't know better.  He has always known he was different, but could never put his finger on why or how.  The things I've heard him say about himself scare me.  I can't walk through Noah's wilderness for him, but as his mom, shouldn't I be doing what I can to ease his burden and make it easier to navigate?

So this is where it begins again.  I need to find a professional advocate for Noah.  I need to word a constructive response to the head of school's email referring to my son as a "negative impact on the learning environment."  Then I need to send that to the teachers, the head of school and the board.  I need to outline a working program for Noah and ensure the teachers put it into place.  That much is the 'easy' part.  The difficult part will be getting them to teach and pay attention to a child they don't like and don't want.  And we have to make sure they do this even after we tell them he's not returning next year.  Just 4 more months until the last day of school....

Even the Cat Lives in Left Field

It feels like everything I share is so serious, so when I got laughing over these pictures, I thought I would share something funny instead this time.

This is Jethro Jenkins Furr, our 9 month old, 12 pound kitten.  He followed us home Halloween night and decided he liked it here enough to stay.  He has a 'purrsonality' all his own, with some very humanistic qualities to go with it.  Sometimes I look at him and say, "Who are you, really?"--usually just in time for my husband to walk in the room and ask who I'm talking to, at which point the cat starts licking himself (although I swear one of these days the cat will answer Shawn and say, "Me, Dad.  She's talking to me. Duh.").  

As you can see, everyone who lives under our roof lives in left field!

Kitten a la King

Cleaning up after Avery is exhausting work.

Even though I know it's not a sink to him and it's just a comfy place to sleep,
I still have to question his choice in sleeping arrangements.

Again, I am questioning his choice in sleeping arrangements.
Man, I wish I found my dirty laundry as comfortable as he does.
We now have sign on the cabinet above the washer that reads,
"Please be careful when loading and starting washing machine.  Jethro likes to sleep in it."

Ever have one of those days when it's just better to not ask?

I guess he thought his diaper was dirty?
(This is his favorite sleeping position; he is extremely secure in his cathood)

Oh, to be a cat, even if just for a day....

"Disabled" is a Mindset

“Mom, all these kids are disabled.   This is a hospital for disabled kids, isn’t it?  Does that mean I’M disabled, too?”  Noah looked around the waiting room at the children with walkers and wheelchairs and hooked up to various tubes and machines.  For the first time after several visits to the hospital we’ve been taking him to, he’d just realized it’s a hospital that treats children with disabilities.  With tears threatening and a voice in my head screaming at me not to panic, I said, “No, you are absolutely NOT disabled.  And don’t EVER let anyone tell you that you are.  We brought you to this hospital because they have the best and smartest specialists to help us help you learn how to work with your Asperger’s.”  Then I hugged my beautiful son reassuringly, excused myself and made a mad dash for the bathroom where I could cry safely.   This has been my biggest and most difficult heartbreak: no matter how much I’ve tried to protect him, my child has been diagnosed with a disability.

I remember when my rheumatologist told me I was officially disabled.   I even had paperwork to that effect for work, for driving, for insurance.  My first thought was, “I have a 12 month old.  I’m a preschool teacher.  I don’t have time to be disabled.”  As I got worse though, I had to agree with her.  I grew to hate that word.  It’s such an ugly, dirty word.  Disability.  Nine years later, I no longer think of myself as disabled.  I still carry the paperwork for legal reasons, but on a good day, I’m as able-bodied as a healthy person.  For me, it was a mindset in many ways.  Once I got past the ugly, dirty word, I became more ABLED.  The last thing I’ve ever wanted (any parent would want) is for either of my children to have a disability of any kind.  When Shawn and I first started investigating Asperger’s, we kept seeing that ugly, dirty word.  Disability.  We made a pact with each other that we would protect Noah from it no matter what.  He would have to know that he has Asperger’s, but we would not treat this as a disability or him as disabled, nor would we allow anyone else to do so.  He’s our son and we’re going to protect him.  We can’t protect him from all the animosity he’ll face in this world, but we can protect him that ugly, dirty word.  We will teach him that he is ABLED.   And we will teach him to speak with authority on just how ABLED he is.

My mom gave Noah Nick Vujicic’s book Life Without Limits for his birthday (if you haven’t heard of this guy yet, check him out—truly inspirational!).  The first chapter, “If You Can’t Get A Miracle, Become One,” immediately drew Noah into the book.  Noah asked me why the book is titled as it is.  I said, “Well, I’m betting that because he was born without arms and legs, people have told him he’s disabled and there are certain things he can’t do because of that.  And I’m betting that HE’S told people that he doesn’t consider himself disabled and not having arms and legs doesn’t mean he can’t do the same things we do, it just means he does them differently.”   We talked about how disabilities can be a mindset.  Some people are truly disabled, so we talked about what makes them that way, then we talked about what a mindset disability might be—for example, being told you can’t do something and believing it, instead of trying it yourself just to be sure.  Noah mulled that over for a bit, then I heard him say from the backseat, “I know why he was born without arms and legs.  It wasn’t an accident and it wasn’t because something went wrong when he was being made inside his mom. God made him that way because that’s how He needs him to look when he does God’s work.”   The light bulb had officially gone off in Noah’s head.  Now, please tell me how I’m supposed to jump up and down with excitement while I’m driving when my son has an amazing revelation like that?!  OMGosh!  My child has actually been listening to everything I’ve been telling him (and if he’s been listening to that, that means he’s listening to other things too—uh-oh!)!!!!!  This was a huge breakthrough.  I’ve been telling him that even though I don’t have the answers, I know he wasn’t born with Asperger’s by accident or because something is wrong with him.  I’ve told him that I can’t explain why it happened, all I know is that this is how God made him so he can do the work God needs him to do.  It is HUGE when a child with Asperger’s can apply something like that abstractly, outside of himself.  I’m so proud of him on so many levels right now!

Noah came to me later to tell me that I’m right, he’s not disabled.  And if those kids in the waiting room at the hospital don’t want to be disabled either, all they have to do is decide to be a miracle, like Nick did.  Oh, my dear wise child, you have so much to teach this world. 

Medical science says Noah is disabled.  WE know he’s ABLED.

There's No Parties in Their Tummies

My husband brought his coffee cup to me this morning and told me something was missing.  It looked full to the brim to me.  Smelled delicious too!  When I greeted Noah at the door with his hot chocolate after he came in from playing in the snow, he informed me that it was naked.  Yes, his hot chocolate was naked.  My family has been baffling me all morning.  Shawn's coffee had coffee grounds, water and half and half.  Noah's hot chocolate had milk and chocolate.  Still, they claimed something was missing.  My own lightbulb went off when Shawn handed me the whipping cream and sugar with an ear to ear grin on his face.  OH!  They wanted whipped cream for their hot drinks!  

After I made it, I tried to lick the beater myself.  No such luck.  Avery caught me red-tongued and demanded his treat.  Alright, you win!

Yes, I've done it.  I've spoiled my family.  Whoops, gotta run.  Shawn says we're out of rosemary-olive oil bread.

Dusting Myself Off

Someone told me that having kids is like having your heart walk around outside your body.  As my family in Maine says, a-yuh, it sure is.

When our children are born, our hearts feel like they will explode because we are filled with so much love we never thought possible. It's not until our children are born that we realize the capacity for love that our hearts hold.  And with each accomplishment, every time our hearts well up again and again with that love, our hearts expand further, to the point we are positive they will burst.  We proudly say, "Yeah, that's my kid!"

Sadly, as I'm discovering, disappointment and discouragement are the complete opposite.  This feels more like an implosion.  And I don't know how many more times my heart can curl up on itself.  We say, "What is happening to my child?  Why is this happening to my child?  Why MY child?"  I want to shake my fist and scream at all the nastiness to pick on someone its own size.  If my own heart feels this bruised and battered, what does Noah's feel like?

As my mother pointed out, these first stages are like peeling an onion.  Each new thing we learn or hear is going to bring up a new emotion.  Eventually (hopefully) it will get easier and better.  And truth be told, Noah probably is handling it better than I am.  He has an extremely good grasp of what Asperger's is and what it means for him.  For Noah, this could also be where the symptoms are more of a blessing than a curse (Fortunately for him?  Unfortunately?  I don't know).

Between the email from the school and our OT telling us that things are worse for Noah than originally thought, yesterday was brutal.  But today is a new day.  We're picking ourselves up, dusting ourselves off and starting over.  Thank you, God, for giving us this chance.

Ka-BOOM

I've been wondering if this would happen and today it did.  The other shoe finally dropped.  And it dropped with a loud KA-BOOM.

Today has by far been the most heart-wrenching and difficult throughout all of this.  Our son has been diagnosed with Asperger's Syndrome.  So what?  We can do handle this (I say with extreme over-confidence).  We'll read everything there is to learn about it and use it to help him.  We'll make sure Noah gets every therapy available and every service he needs, avoid medication if possible, look into alternative therapies, read studies and try changing his diet.  We're going to make this work for him.  As we found out today though, not everyone is as open-minded as we are.  Including the teachers and head of school at the Christian school we chose specifically for Noah.  I've lost any possible respect I had left for this school after everything else they've already put us through this year.  We received a particularly disheartening email from the head of school today regarding our son:

"You must know that his teachers here continue to be very concerned about the negative impact Noah’s presence has on the classroom learning environment, inadvertent as such impact is on the part of Noah. The teachers report that there is a marked improvement in the learning environment when Noah is absent, as has been the case recently with the testing he has undergone."

To say that I was shocked would be the least of my emotions.  Frustration, disgust, disappointment, anger and extreme hurt also rated the top range of my emotions.   I can't even begin to fathom sending such a letter to a parent.  The desire to immediately drive to my son's school, empty his locker, withdraw him from the school and tell the head of school exactly what he could do with his school (using a few colorful metaphors, of course) on my way out the door was very strong.  I didn't do any of that, but the five minutes I spent waiting on him in the parking lot at pick-up time were the longest five minutes I've ever spent waiting on him at that school ever.  My protective-mommy instincts are in overdrive and I haven't been able to stop crying.  When we moved Noah from public school to this school, we promised him this was a good school and that he would be safe here.  We made a point to choose a Christian private school rather than a secular private school.  We promised him he'd be loved, that he'd learn about God and be with other Christians.  We told him that because it's a Christian school, teachers would be quick to put an end to teasing and even worse things like bullying.  And now we're being told that our son is a negative impact on this Christian school that we promised him was safe.  He is anything but safe at school, once again, because not only are the teachers singling him out, but in doing so, are encouraging the students to do so (and they do).  Yes, it is most likely unintentional, but they are setting the example for the students and making a target out of our child.  It's a shame to me that this school isn't up the challenge of our son, who is anything but a cookie-cutter student (and most definitely one of the smartest students they currently have).  I took this excerpt from a friend's response to the head of school's email and my disappointment:


"From the youngest preschool student to the graduating ninth grader, our students demonstrate our core values: enthusiasm for learning, personal excellence, responsibility, integrity, respect, and compassion. Our teachers' love of learning and commitment to our community inspires students to find success in the classroom and beyond. "
Ok, so i took that from the schools front page of their website.  I guess those things are true, only if it is easy and regular.  And with it being a Christian environment you would think that they would have a better idea of what it means helping those who may need it more, being loving and compassionate, and not turning someone away because they don't fit in with the norm. "

It seems to me that someone at the school forgot their Christian morals somewhere between his brain and fingertips hitting the keyboard (did I mention the head of school is a former priest?).  Shawn and I were reminded of a line from the movie The Blindside.  The coach tells the board that if they are going to deny a student based on his low IQ and non-existent school records, they might as well paint over the word "Christian" in their school name because they aren't taking it seriously.  That's how we're feeling about Noah's school right now.  It's not about what's best for Noah, it's about their bottom line and their bottom line is that our son is not what's best for their school.  I'm so angry I could just spit.

MY bottom line is that Noah is MY CHILD.  He is NOT 'a negative impact.'  One of these days,  he is going to rock this world and this world won't know what hit it.

Noah is not Asperger's Syndrome, he has Asperger's Syndrome.  And this world needs to get over it and get used to it.  Grrr.

Happy Birthday to My First Special Gift

Around 10:30 pm on January 23, 2001, while I was watching NYPD Blue, Noah gave me the first signs that he was getting ready to make his arrival.  I waddled upstairs to tell Shawn, who was sleeping (he had a class for work the next morning, so we figured I’d go into labor on or near his class day, a la Murphy’s Law).  He pushed my arm away and said, “No you’re not, leave me alone.  I’m sleeping,” when I told him I was pretty sure I was in labor.  I finally managed to drag my husband out of the house sometime around midnight and we made one of our most life-changing trips ever.

At 1:25 pm on January 24, after 40 weeks (to the day!) of pregnancy, we finally got to meet Timothy Noah Paul.  And what a meeting it was!  The nurse handed eight pounds of “Mommy-it’s-cold-and-bright-why-are-they-doing-this-me?” red-faced, screaming baby to me, and my first question was, “What do I do with him?”  If only I had known how prophetic that question was!  I have asked it almost every single day since (usually looking heavenward, hoping for some kind of divine inspiration!)!  On that day, we embarked on the grand adventure and hair-raising journey of raising our oldest son. 

Noah, I want you to know how much you are loved by me, Daddy and Avery, by all of our family, by your teachers at church and by our friends. Most of all, I want you to know how much you are loved by God.  I hope you grow in His love, day after day, and grow comfortable with who He has created you to be.  Daddy and I are proud of you whether you become a professional toilet cleaner, find the cure for a disease or become a veterinarian-soldier-author (unless you blow up your seventh grade science classroom doing one of your experiments before you get there, then we’re going to have a talk!) because we want you to do what makes you happy. 

                                                                    

I love you Son, happy 10^th birthday.