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.  

SNOW DAY!!!!!!!

There are several other subjects that have been swimming around in my little head--marriage in the midst of a child's diagnosis, some things that Noah has said about having Asperger's and why there is a need for insurance companies to get over themselves and step up their responsibilities--but those will have to wait.  This morning, I'm going to talk about chronic illness in the midst of a child's diagnosis.  (*Disclaimer: I will never write about my illnesses for sympathy or pity, only to further educate, provide humor and for understanding!  Thanks!)

Today is a self-instituted snow day because I am in desperate need of a day at home.  I just looked at my calendar and realized I haven't had a day at home in over 3 weeks.  Our oldest son goes to school half an hour away and while my wonderful husband drives that far out of his way every morning to take him before his 1 1/2 hour commute to work, I still have to drive an hour in the afternoon to bring him home.  The hospital we've been taking Noah to is well over an hour away.  Then you count our errands, Avery's play groups and our other daily activities.  We are an incredibly busy family of four (sometimes I check the backseat to make sure I didn't adopt a third child when I wasn't paying attention; other times I check it to make sure I didn't forget one of the two I know I do have!)! Some moms are built for that kind of willy-nilly, crazy, always on-the-go activity.  I'm not one of them.  Unfortunately, my snow day means Avery will miss his much-loved music class this morning (can anyone say MOMMY GUILT???), but I'm hoping he's young enough that this is one of those things he won't remember when he's in therapy years from now (just trying to be realistic!).  


As I said, I'm not one of those moms who can live willy-nilly, going everywhere and never being home.  I attribute a big part of that to having chronic illness.  I need rest, I need down time (anyone have the definition for that?!) and I need sleep.  I haven't been doing any of that.  In fact, I haven't been doing anything to take care of myself properly--exercising, sleeping or eating--because I've been so intent on Noah and his needs (some days I'm not even sure I'm properly--or at all--processing my emotions).  And when I'm not worried about Noah, I'm worried that we're not focusing enough on Avery in all of this.  I have been truly amazed by God's handi-work and how He has been taking care of me throughout all of this.  My illnesses have been laying low and pain has been at a glorious minimum.  However, after the 6th trip to Charlottesville in two weeks (and the second in two days) on Wednesday, I hit overload.  The dog's nails were clicking on the hardwood floors while she paced, Noah was going into meltdown mode over homework, the baby was shrieking and Shawn was being loud on the phone (sorry, Honey--I love you!).  My brain hit the panic button and suddenly I couldn't function.  I knew that if I didn't run, my poor family was in for it.  Once I hit overload, it takes me several days to recover, usually involves a major flare of my fun little pain illnesses and maybe even a migraine.  We won't even talk about what happens to my mood!  Sometimes I'm able to talk some sense into myself and realize I was doing so well in handling everything, that I can recognize this as the devil's work.  He's bidding for control over what was going so well with God.  Other times, it doesn't go so well and it all goes downhill from there.  This time, it's a mish-mash of both.  I'm able to recognize the mood symptoms and I'm determined the devil is NOT going to get his way.  I AM GOD'S WORK, not the devil's playground.  However (for lack of a better word),  I am headed into a major flare and the pharmacy lost my prescription refill, so while I wait for that to be resolved, I'm trying to resolve things with motrin (which is kind of like trying to put out a 5 alarm fire with a sprinkler).  I am counting on God to help me get through the things that absolutely must be accomplished over the next few days.  The other things will either have to wait or I will have to learn to ask for help (good luck with that!).


Asking for help has never been my strong point.  I like to think of myself as independent, but I'm really not.  I can't function without my husband; growing up, I couldn't function without my parents (there, I said it--are you happy, Mom?!).  A friend recently described me as a strong woman and I quickly said, "You mean 'stubborn,' right?"  Me, strong?  HA!  To me, having to ask for help denotes a weakness in myself.  However (I'm learning a huge lesson here--pay attention!), I'm learning that's not true.  I'm learning that if I'm going to get Noah through this with myself intact, flare-less (or semi-flare-less) and healthy, I'm going to have to learn to ask for help.  And that doesn't mean I'm weak.  It means I'm finally growing up.


Sooo... Who wants to wash my windows and clean my toilets????

Putting Noah to Paper

I think one of the hardest things about this entire diagnostic process has been having to put Noah on paper.  On some levels, it's even been more difficult than the diagnosis itself and the "what's next?" part. 

  I say that for two reasons.  The first one is because in many ways, Noah can be kind of an enigma (at least to me!) and is just difficult to put into words sometimes.  And they give you teeny-tiny little spaces to write on these forms.  How could they possibly get a full view of my child from the three sentences I can fit in those spaces?   How can I possibly help someone "see" Noah for who he is when they've never met him before?  How can I give them an accurate picture of what's going on in our family?  I know the idea behind all these tests and evaluations is for the specialists to make up their own minds; our paperwork is only there to guide them, but I want them to KNOW who he really is (yes, I want to do their jobs for them!).  I don't want him to be just words on paper, or numbers on a score chart. (If you are a parent going through this for the first time, I would suggest sending a picture of your child in with your paperwork, if you are sending it in before your appointment.

The second reason is the most heartbreaking as his mom.  It just plain hurts.  Many of these questions are about Noah's faults--how am I supposed to do what amounts to talking badly about my own child?  Even if I'm able to do it constructively?  I've been filling out various forms of one variety or another for the last 6 months, enough to fill a room (ouch, my hand hurts!), and the questions are all the same:  At what time did you first notice your child's problem(s)?  What are your child's problems?  Describe your child's problems.  PROBLEMS.  PROBLEMS.  PROBLEMS.  They all want to know about my child's PROBLEMS.  To the point where I want to stand up and scream, "YOU KNOW PEOPLE, THERE ARE SOME REALLY GREAT THINGS ABOUT MY KID, TOO!"  Last night Noah had his cognitive (IQ) testing and I really dragged my feet on answering the questions about Noah's social interactions, friendships, gross and fine motor skills and relational abilities.  Those are things that just really hurt to talk about.  But wow, give me a question about his intellectual abilities and I can write a novel (well, I can normally write a novel anyway--but you get what I mean!)!!!  Finally, a question I enjoy answering, one that doesn't make me feel as though I'm verbally beating my child.  Other questions I enjoy answering:  What do you like about your child?  What is fun about your child?  Describe the good qualities about your child.  I can answer those questions!

Soooo...  What DO I like about my child?  Well, he makes me laugh, even when he's busy trying my patience.  While filling out yesterday's paperwork, I realized many of the things I love about him are actually a lot of his Asperger's quirks.  I love how he gives me a different outlook on life and different perspectives on things we both deal with.  I love his sensitivity for animals and his love for his elderly dog.  I love how he loves God and Jesus and his faithfulness to them.  I like that he reminds me how blessed we are.  I like that I need to keep learning in order to keep up with him, and not just parental learning or everyday learning, but real book learning (although I don't think I will ever be able to do geometry or algebra!).  I love his sweet smile and the way he giggles when he knows he's in "trouble" and is doing his best to look innocent.  Most of all, I love NOAH the way he is.

(Hmm, I wonder if I can get away with submitting this next time I have to fill out paperwork?!)
PS:  I told Shawn yesterday that next time I have to sign something for Noah as his parent, on the line where I have to write who I am to him, instead of "mother," I'm going to write "his mommy."  I think that will show them more who they are dealing with!

Ripple Effects and Tsunami Waves

A friend recently told me about the ripple effects in her life, which got me thinking about the ones in the lives of the Furr Family of Four, and how those ripple effects have turned into tsunami waves.

Almost two years ago, God moved us to a new church where He grew us closer as a family and began our education.  Noah was easily accepted for the way he was and no one tried to diagnose him (as it always seemed people were trying to do).  We were so relieved to see him finally be free to be himself.  As we grew closer to each other and to God, we became more aware of Noah's differences, which we'd always noticed, but fought and denied.  We were also becoming more open to the people speaking with love to us about these differences as our frustrations grew.  We started talking to the right people and found the right doctor for Noah.


Now, many ripple effects later, we are riding the tsunami waves of an Asperger's Syndrome diagnosis for our oldest child.  It's been an emotional roller coaster, and even though it wasn't much of a surprise, it was still a shock.  Our calendar is full of more testings and evaluations still to be done, as well as occupational therapy appointments and social skills classes to attend.  It seems as though every available surface in the house is filling up with books to read on how to help Noah and our printer is constantly spitting out more information than we can take in.  We're learning a lot.  We're finally learning to accept Noah as God made him and to stop trying to change him.  We're learning he can't help many of the things he does, but with our help and the help of the various doctors and therapists he now sees, Noah could learn to control and curb some of these, substituting them (hopefully!) with more socially acceptable behaviors.  We're learning how to advocate for our children, how to concentrate on the positives and the tidbits of normal that God gives us.  We're learning to laugh more and take more things in stride.  We're learning about perspective and how to change ours instead of demanding that Noah change his.  The biggest thing I've learned so far is that my college education in child psychology, my days working with children with autism and my ABA training mean nothing where Noah is concerned.  And my days as an advocate?  I'll tell you straight up, it's much easier to advocate for someone else's child than it is for your own (parents have these things called EMOTIONS and those aren't smiled upon in the advocate world).  I'm starting over completely in my learning because now I have a specific person to apply it all to.  


Which leads me to another concern...  How do we avoid losing NOAH in all of this and make sure everyone remembers he is a specific person, not a diagnostic code, not a label or a number?  He's my child, with feelings and a personality all his own.  But first and foremost, Noah is God's child, and as the Bible tells us, God made us all in His likeness, even kids with Asperger's.  


I don't know why Noah has Asperger's.  I do know that God has great plans for our boy though, and somehow, this fits into that plan.  


So, here we are, living out in left field, riding the tsunami waves of the ripple effects.