What We Hear

Hard-working kid right here.

Being a parent to a kiddo who is different can make you prickly.  Oh, we're quick with the inspirational quotes and never, ever doubt the depth and ferocity and the intensity of the love we have for our kids, the same as any other moms, but still, it makes us a little less patient with others. And that's a pretty simple equation, really - we have to have more patience for our kids than other parents do, and so others get less of it.  We'd be sorry for this if we thought it made a difference.

And I'll be the first to admit that I have a complete oxymoronic stance when it comes to my son.  If I say, "Oh, Junior has special needs" and I get a sympathetic gasp and an, "Omg, that must be so hard," or something, I'm like, "NO IT ISN'T. He's perfect and I'm his mom and loving him is the easiest thing in the world!"

If I say it and instead I get something along the lines of, "Well, at least he isn't ___________" and fill in the blank with whatever childhood illness or disorder you like, "because, you know, it could be worse," I want to get in their faces and ask them how comforting it would be to stand in a doctor's office, be handed stacks of diagnoses and then be told, about your own baby, to buck up, that it could be worse.

See?  Prickly.

As Justin gets older and his quirks, as well as his delays, become more of an issue (what seemed passable at 3 and 4 looks stranger at 5 and 6), we find ourselves just smiling and bluntly saying to other parents at activities, "Junior has special needs."  We find ourselves explaining to coaches, assistants, librarians - this is our son.  He is a great kid.  But he has some challenges.  Sometimes we talk actual diagnoses.  Sometimes we don't.  It depends on who the listener is and what the situation warrants.

Most of the time we get a nod, a smile, an okay-thanks-for-letting-us-know and life moves on.  But sometimes, we don't.

"But he looks so normal!" is one that I hear a lot.

I'm never sure how to respond to that.  Um, thanks, I guess.  Yes, he does look normal, doesn't he? Dirty blonde hair, gray eyes, relatively clean...but you know, even if he didn't somehow fit what others view as "normal," it would still be his normal, and my God, what in the hell does that really mean, anyhow?  Your face looks normal, okay?  And you suck.

Sorry.

What we hear when someone says "But he looks normal!" is "I'm uncomfortable with differences, and I assume you are, as well."  We hear someone who almost certainly means well, but doesn't quite know what to say. And that's okay.  We have been there, too.  But stop.  Please.  We are okay with different.  In fact, we celebrate different.  We don't need normal.  I promise.

"All kids do that."

When we hear that, we hear a dismissal.  I hear someone who probably thinks children with autism can be cured with a good spanking and that ADHD is made-up.  I hear someone who thinks that he or she has all the parenting answers.  We also hear someone who is fortunate, because they have never had a doctor or specialist look at their child and say, "That's not normal."

Closely related to this is the, "Well, any kid has trouble with that, or thinks that's hard."  Yes, I'm aware that a lot of children have difficulties in learning.  Let me know if your child is still struggling to identify all his lower case letters after two years. Because what I hear is someone not just dismissing my kid's struggles but someone who is also taking away the magnitude of his achievements.  Let him have both.  Because he has both.

"They have a diagnosis for everything, don't they."

Yes, I have heard this one.  For real.  Paired with a dismissive little laugh. And what I heard was the sound of my own head exploding as I walked away to prevent homicide charges.  Because what this translates to is, "I don't believe any of it.  Because I have not seen the struggles, or cared enough to learn about them, because I don't know your son, I'm going to completely shit all over him and his challenges, tra-la, tra-la."  Ugh.  There's no fixing that one.

"He's lucky to have you guys as parents."

What we hear is someone complimenting us, and we take it as such, but what we would like everyone to know is that when it comes to measuring luck, our kid got the short end of the stick compared to what we got.  I mean, seriously.  We feel so fortunate, and I mean truly, truly blessed, to have this kid as our own.  Because he is freaking awesome.

"What's wrong with him?"

What we hear is ignorance.  And that can be meant both in a negative way, as in, "This ignorant asshole is about to be schooled in what the word 'wrong' really means," or in the true sense, as in, "This person simply doesn't understand that special needs does not mean something is wrong, but that something is different."  We're pretty good at telling the two apart, and we answer accordingly.

"He listens better than my kid!  You are lucky!"

What we hear: "We have no idea the time and money you have spent in behavioral therapy, the months you spent battling over every little thing. I didn't see you at Walmart that day that every two steps you  took you had to tell your son, as he screamed that he hated you, hated himself, as he punched himself and clawed his wrists, to sit on his bottom and give you quiet hands, mouth and feet, over and over, until you were both drenched in sweat and tears, how much work that took, and how you had to do it every time, every day, because the doctors said his very safety relied on him listening to you, I didn't see it, so it didn't happen."

My kid is really well-behaved.  That's because we parented him.  It does not mean he doesn't have challenges.  It means we parented through those challenges.  It also doesn't mean that another child with special needs is going to have the same abilities, or that Justin can actually stop repeating "eyeball" over and over at this moment. What it means is that if Justin loses his shit and starts running off, we can say, "On your bottom!" and he drops like a rock, almost by instinct by now, and we can be reasonably certain that he isn't going to get run over by a car.  Not parenting him was a luxury we did not have.  That was not luck.  What you are seeing is survival.

"He's doing really well."

"He's a really neat kid."

"I love your son."

What we hear: That you see him.  That you know he has challenges and that he is still managing to thrive.  That you see his growth and know that it's a little harder won than it is for most kids, and that you are proud, too.  He is a really neat kid, thank you.  And I love that he is so loved -- he is worth the loving.  All of it, and then some.

His Heart Is A House AND IF YOU MESS WITH IT I WILL HURT YOU SO BAD

I'm not used to being angry.

Annoyed, yes.  Irritated and short, you bet.  But a pervasive anger, one that keeps me up at night thinking about all the things I will say, should have said, plan to say...the kind of anger that brings hot tears to the corners of my eyes as I'm rinsing dishes?  Nope.  Not too much experience with that.

But my son's IEP meeting made me that mad.

It made me so mad that I actually forbade myself to write about it until now, because I worried that I may write something just awful and mean, out of this place of anger I have developed.  Five weeks after the meeting and I am still angry.  In fact, I have other things that have made me angry to add to the list.  But I am pretty sure I can do this without calling anyone names.  Probably.

So - the IEP meeting.

I am fortunate enough to have a wonderful friend whose career is in special education.  In fact, she has even taught special ed teachers.  And honestly, she has listened to my concerns about my son for close to three years now, and is one of those friends who knows when and how to say, "Sam, let it go -- YOU ARE ALL FINE."  (We all need a friend like that, I think.)  But she had her own concerns with how certain aspects of our son's education was being handled, and offered to be called in during the IEP meeting.  She said she wouldn't say anything unless she needed to, but that she would be there, in case.

Thank God.

My friend helped us understand that a medical diagnosis does not necessarily mean an educational diagnosis, but that we had plenty of reason to suspect that Justin's disabilities were keeping him from accessing the general education curriculum, and that accommodations may be needed in order to grant him the educational opportunities he is promised under Missouri law.  And that to get an IEP, he has to have an educational diagnosis, meaning he would need to be tested, but that in order to receive testing, a school has to simply suspect that a child has a disability.

Using her as a resource, Justin and I prepared for the IEP meeting.  We checked our emotions at the door, and came armed with actual data.  Diagnoses and test scores, notes from our son's therapy for the last year, MRI results and neurology exams.  The school didn't need to suspect that our son has a disability.  We have actual proof.  The testing the school themselves gave them placed him in the 1st percentile, meaning that out of 1,000 students given that test, 999 of them scored better than our son.  And yes, I know that testing is bullshit, but seriously -- those test scores should have raised some eyebrows, considering they were the ones who administered it.  I mean, if they don't even utilize the information they get from it, what in God's name is the point?!?

Sorry.  Getting angry again.

I knew I was doing well in that meeting.  I explained our concerns, using the verifiable data to back my concerns up.  I used concrete examples.  I was clear, concise, calm.  My husband spoke up, as well, and he, too, was clear and data-driven.  My friend, who had been phoned in, was silent so I assumed she thought we were handling shit like total bosses.  And we were.  I was certain they would agree to test him - how could they not?

And then two of the six seated there objected, while the rest remained largely silent, with one telling me, almost apologetically, that she had just been given Justin's file that day.  But since his teacher didn't seem concerned...

I pointed out that everyone who came into contact with my son, from his family to friends of the family to an entire team of professionals at Children's Mercy whose specialties range from pediatric neurology to autism to behavioral therapy, all had concerns with my son's ability to access the general education curriculum without accommodations except for them, and that I really wanted to know, considering the test scores, the data, the diagnoses, the fact that the teacher sitting right there herself wrote a note saying that my son could not complete any work without a lot of intervention, could someone please tell me AT WHAT POINT DO THEY ACTUALLY START TO BECOME CONCERNED ABOUT A STUDENT?

None of them could really answer that.

What they could do, however, was advise us to use flashcards, and then shove a piece of paper at us that had been printed out, before we even showed up to the meeting,stating they were denying us testing and denying us services.

I was completely numb.  Like, car wreck, oh my God this is so surreal, is this really happening numb.  THEY ALREADY HAD THE PAPERS DENYING MY SON SERVICES PRINTED OUT.

And then my friend's voice, calm, clear, authoritative, sounded from the phone.

And she was saying shit like "IDEA" and "tier two student" and naming specific tests and saying things like, "I don't believe the teacher is being absolutely truthful about X when one considers Y" and "I believe Justin and Samantha have provided you with more than enough data to support the fact that Justin, Junior has a disability," sounding like a goddamned bad ass and she was advocating for my son and she had the language to do it with and the looks of their faces, stunned and reddened, made my angry heart a little happy, and I had to look at the table to hide my smile.

When she was done, in total mic drop fashion, they pulled the paper that denied us services back and, as a team, decided on what testing to do for Justin Ryan.  And, as it turns out, they decided to test  him for nearly everything but hearing and vision and daily living skills.

It's not a very good feeling to send my son off to spend the day with a teacher whom I truly don't feel has his best interests at heart.  Justin and I have spent hours discussing the reasons why a teacher wouldn't want a child who is struggling to have the support he needs, but we can never come up with a valid reason why -- we just know that it does happen, and it's heartbreakingly unfortuate.  His teacher couldn't even be bothered to finish a form sent to her by our son's therapist. Furthermore, she's supposed to be indicating on each worksheet how much help Justin is getting on it. She did it for two days.  And then for a week or so, he came home with beautifully completed worksheets with no indication that he had any help.  And now that's trickled off and he's coming home with blank worksheets that may or may not have his name partially written at the top.

Because, you see, when a kid doesn't have an IEP, a teacher who may not have the time to give him the help he needs doesn't have to make sure he is getting the help he needs, and so Justin does nothing.

Also, his favorite teacher is the focus room supervisor.  Let that sink in.

So he comes home with blank worksheets that he doesn't do in class, plus his homework packet with  more worksheets in it for the week, plus his "practice" tracing for numbers and the alphabet, plus the ever-growing list of sight words he is supposed to know and most evenings he looks at me with his tired gray-green eyes, his face growing more angular and older and boyish by the day, and says, "My battery is dead, Mom. It's drained.  It can do no more."

And so I do not ask his battery to do anymore.

Now, on top of this, he is dealing with bullies.  Unsatisfied (surprise!) with his teacher's response to my concern, I spoke with the principal about it, and a plan was quickly put into place, and they have agreed to work with my son at school on how to deal with bullies.  We are working with him at home, as well, but our son doesn't understand.  Everyone is his friend.  The kid who brained him with a piece of concrete so hard that my son has his first and only scar?  Justin asked him to sit next to us when I went to have lunch with him.  The little girl who punches him in the stomach?  He gave her his graham crackers.  And how can I explain to my child that not everyone in this world is his friend? That not everyone in this world deserves to be his friend?

A few weeks ago, my son told me something that blew my mind.  Made me cry.  Made me think.

"Mommy," he said, "My heart is a house, and anyone can live in it."

And I hate the thought that anyone might tear that house down, or damage it, or weaken it through careless handling and mishandling and ignorance.  In fact, that bothers me far more than Justin's inability to identify all the letters of the alphabet, or his tears over sight words.  It terrifies me.  It makes me cry into my husband's chest, asking what we can do better, or different.  It sends me to my knees to pray to Jesus to help me, please, raise this boy in the manner that he deserves to be raised, because my God, I feel like I am not always worthy of the task.  Because what if I am the one who tears that house down, or damages it, through careless handling or mishandling -- or because I allowed someone else to handle it carelessly?

I always thought I was pretty okay at this writing stuff.  But never, not once, in all my years of pounding away at a keyboard, have I ever been able to articulate something so perfectly, so beautifully.

His heart is a house, and anyone can live in it.

And that, folks, is why disabled simply means different, and never, ever does it mean less than.  And it's why he deserves the same education as every other child - because he is worth it, and capable of learning, and I am not going to allow some teacher who decided that an IEP was too much work keep my son from getting just that.  Because it isn't that my son knows none of the sight words, or that he can't identify all his letters -- it's that he is starting to understand that other kids understand things that he doesn't, that school is hard for him, and that, in  turn, makes him shut down. He no longer wants to try.  And when he doesn't even try, he certainly doesn't learn.  It's an ugly cycle, and I refuse to let him start in on it.

His heart may be a house, but my heart?  It's shaped like a very specific five-year-old boy who fills every nook and cranny of it.  He is my whole heart.

Let Me Tell You How I Feel About Mid Quarter Reports And Some Other Shit

"Mommy, I have something very important for you!" my son cried even as he was exiting the school bus.

I love this moment - his bright, eager face, the way his knobby knees pump enthusiastically as he makes his way up the drive, the book bag loaded with crumpled work, his "reading log" that already looks like it has been through a war.  A wet war.

First Day of School

Of course, when he says, "Mommy, I have something very important for you!" I get a little apprehensive. Sometimes this means a worksheet of which he is particularly proud. Sometimes it's an envelope addressed "to the parents of Justin Kilgore," which means that he has once again gotten into trouble.  It's a toss-up.

Today, it was his mid-quarter report.  Did we even have such things as little kids? I don't know. But his green eyes were lit up, and I smiled at my sweet boy's enthusiasm.

"Did I do good?" he asked me,

I scanned the report, and there, in a literal block, in bold letters, are the words: Below Grade Level.

"Yes, baby," I answered, folded the 3 page report and took him inside.  He immediately bolted for his room, where he stripped down to his underwear and came running back up the hall, ready for his snack, just like every other school day.

I got him situated with Cheetos and water colors because hey, bitches, it's Friday! And then I opened up the report to read that Justin doesn't transition well.  That he struggles to complete work without assistance.  That overall he is a great student but, but, but.

And that these are the things I can be doing to help him.

Read to him every day.  Check.  Usually before and after school.

Letter flash cards.  Check.

Number flash cards.  Check.  

Practice sight words.  Well...

Just this Monday, Justin came home with a new folder - his homework folder.  Four worksheets as well as a list of sight words, to be done throughout the week.  And I tell you, every evening we have sat down and worked on this stuff.  After I place my son on the bus at 8:19 and get him off of the bus at 3:52. After snack and before dinner and bath, before we read (yes, at least 20 minutes!) and before my exhausted child falls heavily asleep between 7:15 and 7:45.  My hours with my son are few these days, but still, we have been doing the homework,

And I tell you, it's hard for him.  He doesn't recognize numbers past 10.  It took a concerted effort between his last teacher and me, and many months, to get that,  He recognizes his name, but none of the sight words.  He still doesn't recognize all the letters of his alphabet, but hey - a year ago he knew none of them and was still pooping his pants, so I mostly I have been feeling pretty good about stuff.

But after going into his sight words the third time, he no longer makes eye contact with me.  His hand bats at his ear. His bones hurt, he says, and his eyes no longer work.  He is done, and you know, I don't blame him.  It has been a long day.

And here is the thing - my son has special needs and delays, and I am not a special ed teacher. I ran the homework program at the Boys and Girls Club, but I am stumped and, frankly, overwhelmed when I try to explain certain concepts to my son. I draw pictures, I do flashcards, I draw pictures on our own flashcards (V IS FOR VACUUM!), but I think this is beyond flashcards, folks.

So this mid-quarter report, it pissed me off.  And let me clarify that I think his teacher is wonderful. My son adores her and he works hard for her. I am, however, pissed at a system that thinks my 5 year-old child should have homework. I'm pissed at a system that, not even 6 weeks into the school year, stamps Below Grade Level under my son's name and then gives me suggestions on how to correct this...as if my husband and I have just been lazy or something. As if we haven't done everything we could do to give our son every advantage. I'm pissed at a system that keeps my child all day, 5 days a week, and still believes that isn't enough work for him.

This is the system that, despite the fact that we have pages of diagnoses from the best professionals in the area, despite the fact that he scored only in the 1st percentile in his screening exam, despite multiple meetings in which we expressed our concern, convinced us to just go forth "for now" without an IEP, that despite it all, he was performing at an age-appropriate level.

Can someone explain how that changed in 6 weeks? I'm confused.

And I'm pissed that I believed it.

So I called my husband, and he got pissed even quicker than I did.  "We told them!" he yelled.  "We told them he needed an IEP, we had a stack of shit proving it, and this stupid report is just one more thing to add to the stack!"

Yes. The Stack. It's about 6 inches thick already, bless it, and I am about to use it to beat someone.

I'm pissed and concerned.  Because today, with his trusting nature and easy confidence, my son believed me when I said he was doing well.  But what about when he can read?  What about when he realizes those tests that he frankly does so poorly in are considered to be a measure of his academic worth?

And oh, I will tell him they are not.  That he is worth so much more.  That he is worth everything. But I worry it won't be enough.  And I want him to know that I may be pissed at the system that quickly labels him below grade level, but labels him in such a way that they don't have to provide him with services that his father and I, as well as an entire team of professionals at Children's Mercy, have said repeatedly he needs...but I am nothing but amazed at what he has accomplished.

He sits down and eats his breakfast every morning. He helps me pack his lunch and likes to remind me to "put the time in my reading log, Mommy!" He gets himself dressed and he brushes his teeth with very little resistance. He doesn't dawdle, because he knows if he gets done early, we'll read from his Bugopedia outside until the bus comes.  (He can't recognize the word it yet, but ask him about mosquitoes.  Or hornets.  Or honeybees.)

And he gets on the bus, every morning, and has only cried once.  And he turns and waves and yells, "I will see you shortly, Mommy!" every morning, and every afternoon, as the bus rolls to a stop, I can hear his loud, clear voice, ringing out, "THIS IS IT! THIS IS MY HOUSE!"

And I am amazed that he has only forgotten his lunch box at school just once, and that he comes home with work that he is so very, very proud of, work that he can't wait to show me.  And I am proud that he is so excited to tell me about his day that his whole little body fairly vibrates with it, that sometimes I have to take him in my lap and squeeze him until he can pull it together enough to tell me about that day's adventures.

He sings snatches of songs that I haven't taught him, and says sayings that he didn't hear from us and he is learning. He may be struggling with sight words, but he is absorbing so much.

And I am proud that he is learning to be a bigger person that the children who, unfortunately, have already started to bully him.  Yesterday, when I went to have lunch with him at his school, one of the two friends he invited to eat with us was the same little shit boy who brained him between the eyes with a chunk of concrete. I wanted so badly to lean across the table and tell that kid that if he ever laid a hand - or chunk of concrete - on my beautiful son again, I would hunt him down...but my boy's face was so happy, and what could I do but be proud of this bighearted child God has entrusted me with?

But I am not happy with a system - and a society - that is expecting so much academically out of our children at such a young age.  Homework at age 5?  Seriously.  That is ridiculous. When my kid gets home, what I would like to do is take him outside and let him run and run and run and scream and run and play in the dirt for awhile before he crashes.

And I bet it would be more beneficial than practicing sight words.

I want to know these things: I want to know if he is participating.  If he is listening.  If he is interacting with his peers.  If he is being kind and patient.  I want to know if he is being respectful to his teachers and to his peers.  And yes, I want to know where he is struggling...but I want to know where he is succeeding, too.  Because from where I am standing, his successes stack up way higher than his inability to recognize the word it.

Why I Am Totally Fine With Barbecuing On Memorial Day

It was Christmas morning, and I was home from college.  It was early - the sky hadn't even softened to a navy blue yet, but I heard the coffee maker spurting out its 10,387th pot of coffee and I made my way to the kitchen, knowing my dad would be sitting at the breakfast bar, sipping his black coffee from his favorite coffee mug.

As always, my dad teased me as I laced my own coffee with milk and sugar (because otherwise, gross) and we began to talk.  And somehow, among the ins and outs of our chat, my dad told me how, as a paratrooper during the Vietnam War, he had been a member of both the 82nd and 101st Airborne Division.  It was something I hadn't known - because he had never mentioned it.

Dad didn't "do" war stories.  He might tell you about the monkey they found in the jungle and adopted, naming it Charlie (and I was probably in my 20s before I got that particular joke) and giving it beer, or the time he went to Japan on R and R.  He'd tell you about boxing, maybe, and how he once went to fight wearing nothing but his helmet and his underwear when the siren went off in the middle of the night, but it was a funny story, not a "war" story.

But other than that, the only thing he would really say about being a paratrooper during the Vietnam War was that anyone who wasn't scared the first time they jumped and wasn't scared the last time they jumped was either crazy or a liar.

That morning marked the first time I really understood that this man, compact and gentle, sweet and reserved, had been in combat.  That he had undoubtedly seen and done things that I would never be able to comprehend, that he had fought, had feared for his life, I'm sure, and seen good men die.

It was hard for me to reconcile the two.  Dad and hero.  Dad and dude who jumped out of planes in the middle of a jungle while people tried to shoot him out of the sky.

But Dad wasn't welcomed as a hero when he came home.  So, as a young man, angry, certainly, perhaps disillusioned, my father stood on Virginia Beach and began throwing his medals and ribbons into the Atlantic Ocean, flinging them far into the waves.  And he came back to Smithville where he saw a girl with long black hair in a mini-skirt, her car broken down on the side of the road, and he married her and they had four children and lived a life.

Before my father died, he contacted the Veterans Administration and requested copies of all his service medals and ribbons - you can do that once, if you are a veteran.  The package came several months after he died.

My dad had a lot of medals.

There is one particular morning, taking my dad to his radiation, that I will never forget.  It was cold, but bright - the way it gets, sometimes, in the mornings in Missouri in the middle of winter.  The kind of morning where the air is sharp and clean and almost painful to breath, and all the trees, bare of leaves, stand sharply limned against the rising sun, which colors the cold sky pink and orange and purple.

And my dad, terminally ill, his strength fading, he started to sing in my car.

"Good morning, America, how are you?  Don't you know me, I'm your native son," he sang softly, and I struggled not to cry, because I knew he was simply appreciating the beauty of the morning even knowing his mornings were limited, and I didn't want to ruin it for him.

My dad, native son that he was, died because of his service to his country, from a cancer directly related to his time in Vietnam.  Even the United States Army admits it.  And so, at his funeral, he was granted military honors and my brother-in-law, who is also a soldier, performed the flag-folding ceremony and presented my mother with the precisely folded triangle of cloth, a triangle of cloth that I swear to you must weigh a thousand pounds, saying, as he did so, "This flag is presented on behalf of a grateful nation and the United States Army as a token of appreciation for your loved one's honorable and faithful service."

And even as my heart literally felt like it was breaking - I mean, it was a physical pain in my chest, an ache, like my heart was a fist that had clenched too tight and cramped - I was reminded that my dad was a true patriot.

And Memorial Day, it's a day devoted to true patriots, right?  And those of us who have never served, we can't comprehend what service men and women and combat veterans have gone through, the bravery they exhibit, the type of courage and dedication and love of country it takes to literally sign a chunk of your life away, knowing you may not actually get that life back at all.  And so we fly our flags, instead, and loudly bless the troops and maybe attend a ceremony, and tell people to remember that this particular day is not all about camping and barbecue.

My dad was a master at the barbecue.

With a can on Busch, a platter of meat and his old-school charcoal Weber, my dad was king of the universe.  Do you barbecue well?  My dad was better.  In fact, to this day, I can't watch anyone grilling anything without raising my eyebrows slightly and thinking, to myself, "Well, that's not how Jack Palmer would have done it."

He barbecued on Fridays.  On long weekends.  In the winter.  And he certainly barbecued on Memorial Day.

And tomorrow, weather permitting, we will be barbecuing.  Because it's what my dad would have wanted. Because if he was here, it's exactly what he would be doing, and he would happily wave at any neighbors who happened to be doing the same.  Because, even though I am crying as I write this, tomorrow I'll honor my dad with hot dogs and hamburgers and by letting his grandson run around barefoot in the yard dressed in red, white and blue with the stupid little champagne poppers I got him at Walmart and enjoying the day in a stereotypical, small-town America fashion.  Maybe humming "Good morning, America, how are you?" under my breath as I bring my husband, another veteran, a can of beer as he barbecues.  And I am not going to feel badly about any of it.

And you shouldn't either.

Because honoring isn't always about grief.  Sometimes it's about celebration.

A Little Less Talk...

Do you know what happens when you finally get a diagnosis that makes complete sense, that encompasses all the physical and emotional and cognitive issues you have witnessed in your child daily?

Not much, actually, except some "Ah-ha!" moments and people finally stop giving you parenting advice that you always knew wouldn't work because they finally realize for themselves that it probably won't work, too.  But honestly, even after the diagnosis, you're still left feeling mostly overwhelmed and kind of stupid and completely uncertain as to what you should do next.

Do you know what happens when you find a doctor who cares nothing about telling you what is wrong with your kid but instead wants to focus on how to best parent effectively to your kid's actual needs and challenges?

Your life changes.  That's what happens.

Our parenting plan has not been an easy road, because frankly, even the team of behavioral specialists at Children's Mercy told us bluntly, "Your son is not ever going to be an easy child to parent."

Yeah. Thanks. Too bad our health insurance didn't cover that little bit of medical gold.

This doctor we are working with is awesome, but we have had to hear and accept some hard truths. Things like "Quit putting your own anxieties on to your kid," and "Your intentions may be good but you are reinforcing this behavior, this fear, this reaction, and you have to stop."

But we aren't going to him so he can hold our hands and tell us we're doing fine, because obviously, we haven't been.

And it's not just about telling us what to stop - he has given us very concrete advice.  You know how people are always like, "Yeah, too bad kids don't come with a manual"?  Well, they don't, but if they did, we're pretty sure it would be written by this doctor.

So much of what we do is so simple.  We don't lecture.  There is no reason to lecture - our son doesn't understand, and lecturing is a waste of breath.  We have learned that it's perfectly fine to simply say, "Because I said so," and leave it at that.  We have learned how to do time out in a way that works for our kid, and, more importantly, how to practice time in, which felt corny and fake at first - we don't wait for awesome behavior to praise our son, we praise him for "okay" behavior, things like listening the first time, or sitting still while eating lunch - but it's becoming more natural. We are learning how to discipline, and when to discipline, and when to ignore.  We are learning that discipline is, at this age, so much less about punishing and so much more about teaching.

We are learning that our son's diagnosis may be the reason he behaves a certain way, but it is not an excuse.

It was freaking horrible at first, as we implemented the new strategies we are learning - strategies that we have to implement every time, without fail, no matter what, and often left us exhausted at the end of the day, as if we had spent 12 hours pushing a rock up a hill instead of just parenting our own kid.

His behavior escalated - and by escalated, I mean it skyrocketed - apparently a natural reaction as boundaries are set and enforced, but it made the exhaustion at the end of the day just that more exhausting.  Like, "Can you please tell me why we are doing this, if it's going to make the problems worse?"

For example, he spent a day at school jumping up on the table and yelling, "You are hideous!" to his teacher. At the store one day, he started yelling, "I hate you and I hate this stuff!" before biting himself and punching his own forehead - because we had to go to the frozen food section. There were daily episodes that left me literally dripping sweat and shaking and swallowing back tears until bedtime. He would refuse to get in his booster seat.  He punched me.  He kicked his dad.  Everything was met with resistance.  He screamed that he was nothing, that he hated the world, and then would cry like his heart was broken and beg me, "Don't let me say those things anymore," and my own heart broke, too.

But we didn't yell.  We didn't stick him in time out for 137 hours or spank him or berate him or lecture him.

It was, "Sit down.  Quiet mouth, quiet hands, quiet feet."  And as soon as he could give us all three, he was all done.  Sometimes that took 15 minutes.  Sometimes that took 2 minutes.  But it was every time.  Every.  Time.  I'm talking more than 30 "time outs" a day at first,

But then, things started getting better.  And then a lot better.

We have days that our actual triumphs, days where the color of the floor at the supermarket is not an earth-shattering event, where the hum of a commercial freezer is met with covering his ears rather than screaming, where brushing our teeth is "No big deal, right, Mom?"  Days where we keep our clothes on, and put our shoes on, and maybe even try a new food.  We have days where he gets upset, and manages to reign in his anger enough to not bang his head or punch himself.

We have days that end with not just us being proud of our son, but of our son being proud of himself.

And although I won't lie and say that we no longer raise our voices - because c'mon, at the end of the day, he is 5, and 5 can be frustrating to parent, whether your kid has challenges or not - I will say that the yelling is now a rarity instead of a daily occurrence.  And not because we are naturally gentle, patient people - we are not - but because we see now how ineffective it is with our kid, and how much more effective this other stuff is.

And folks, he poops in the potty now.  The doctors were never sure whether that was a cognitive issue or a behavioral one, but I can tell you as a mother who stopped buying pull-ups long ago yet still had a pre-schooler pooping his pants, it doesn't matter - it was an issue, period. And the pride all three of us felt when it finally happened cannot be measured.  Junior now tells people that "pooping in your pants is boring."

"Boring" is not the word I would have chosen, but whatever.  I am proud.

We still have daily struggles.  Daily challenges.  But challenges are now causes for action rather than despair,  There are lifelong emotional and behavioral and cognitive challenges to be met going forward but we know now - our son's diagnoses may be the reason, but we will not let them be the excuse.

The other day, we were at the store, and Junior was walking alongside me, holding onto the cart, meowing.  A lot.  Constant meowing.  Just lots and lots of meows.  And one of the trickier parts of having a kid with Tourette's Syndrome is differentiating between a kid who is meowing, which he has the ability to stop, and a kid who is having a vocal tic that is making him meow, which he is incapable of stopping.

People were staring.  People stare a lot, to be honest, and it's always made me feel defensive, always made me want to snap, "Listen, he has special needs!" But I don't feel the need to do that anymore.

Instead, I just started meowing, too.

Because whether he was meowing simply because he felt like it, or because he was ticcing, meowing never hurt a damned thing.

And that's what I mean by life-changing. We've known since our son was three that something was different.  And we spent two years chasing a diagnosis.  "He has epilepsy.  We suspect autism.  He has definite cognitive delays.  He has a behavioral disorder.  He has a language processing disorder. He has a generalized anxiety disorder. Wait, we still haven't ruled out autism.  He may have autism. He has Tourette's Syndrome and OCD and probable ADHD...but you have had him tested for autism, right?"  Two years of laying awake at night and wondering, getting on the internet, surfing websites and blogs and checking off symptoms...chasing that diagnosis.

But the diagnosis does not matter, except for the fact that an actual diagnosis opens up doors for resources that our son will need.  But in our daily life, his diagnosis is really secondary compared to actually dealing with the outcomes of the diagnosis.  It may be the reason, but not the excuse.

A little less talk...and a lot more action.  It's sort of become the motto around here, sometimes actually sung out loud when we realize that our son has had a fantastic day, sometimes muttered under our breath when Junior loses it and we want to lose it, too.  But we don't.  Mostly.

Something else that is life-changing?  We have been sleeping like babies.

Meow.