Tuesday, December 25, 2012

Acceptance

I was asked to (or have the honor to) blog about what I want in 2013. I was given the freedom to write about anything I wanted... funny, long, short, serious, autism related,whatever. So, I farted around for a couple of days not getting anything done really, stressing myself out not getting my assignment done when it hit me...

Acceptance.

2012 has been a wild ride for the boy. We watched our first "major" regression in Jack's progress, and it scared the shit out of us. It lead us to one of those "put up or shut up" points with the school. And he put up. Things have been going better and better every day. We're not popping the champagne yet, as we want to make sure he gets through the transition after winter break, but it's looking great. We're spending the entire day in class now. We're completing assignments and instruction within the allotted time. We're performing at general ed levels... even excelling at times.

Then, we'll have one of those out of the blue aggressive/mysterious/non-compliant/regressive behavior therapy sessions. They always remind me of the same thing. We are not done. Our work will never be done. No parent's is.

But I have some great things going for me.

In 2013 (and beyond) I will try to:

Accept at long last that my child is autistic. He will always require extra attention. Celebrate his successes and not dwell on his failures

Accept that children aren't perfect and parenting never ends. Celebrate all of our children's successes and don't dwell on their failures (or our own).

Accept that I have an amazing support team. A support team that knows what they are doing and truly have the best interests of my child at heart. They do... all of them.

Accept that I have some amazing friends and family. Friends and family that know what they are doing and truly have my best interests at heart... and want to help.

Accept (and mostly) that I have an amazing wife who cares about the boy even more than I do. Additionally, she cares about me even more than I do. And she does it all while working a full-time job that allows us to have one parent home with the child a luxury I, embarrassingly, often overlook.  She is the one I take advantage of most, but should the least. I need to accept that she is amazing and thank her more often.

Finally, Accept that I have an incredible son. He can do amazing things... and I need to remind him of that more often.

In 2013 I would like to be able to accept things better. I should start now.

Jack, you are an amazing child. I love how hard you work. I love your sense of humor. I love your creativity. Things aren't always perfect, my boy.

But I  accept them.

You are good.

Thursday, December 20, 2012

Happiness is a Warm Gun




There is a profound sadness in our collective soul. From this sadness comes hatred, accusations, assumptions, and blame.

And the inevitable "if onlys"...

If only he had a smaller magazine.
If only he had a knife.
If only the teachers were armed.
If only the school was locked.
If only he didn't kill his mother.
If only he didn't have Aspergers.
If only he wasn't insane.
If only we locked up the mentally unstable.
If only he had enough money to buy medication.
If only he took his medication.
If only his medication didn't have side effects.
If only this had happened in an inner-city.
If only everyone paid more taxes.
If only everyone paid less taxes.
If only we had national health care.
If only he had been a responsible gun owner.
If only he went to the police station instead of a school.
If only he couldn't drive to get there.
If only it was a high school.
If only he was still a minor.
If only his parents hadn't divorced.
If only he didn't play video games.
If only he didn't watch TV.
If only God was allowed in schools.
If only God wasn't allowed in schools.
If only he hadn't killed 1st graders.

26 "if onlys". One for each of the victims killed in Newtown.

And none of them are right or wrong.

I am not educated enough, clever enough, or powerful enough to tell you what the right answer is to "why did this happen?"

And neither are you.

What happened in Newtown is a tragedy. A tragedy that strikes me like no other because I have a first grade son, with autism, in our schools, that I want to protect. I want to do everything within my power to make sure this can never happen again. But, as the ironic song that titles this post suggests, it's not that simple. I am willing to take some time and listen to both sides of the arguments on gun control, health care, mental health services, god in schools, violence in the media, school safety, insanity, broken homes, taxes, genetics, prescription drugs, Autism, and atrocity.

Are you?

How can we think about the unthinkable? How can we justify the unjustifiable? How can we explain the inexplicable? How can we listen to what can not be said? There are 26 less people to answer those questions now... most of them children.

Children for fuck's sake. 

I've been trying to write something this entire week about Newtown. However, every time I try I'm just simply overtaken with a profound sadness. I don't live in Connecticut, but I am the father of every one of those souls that were taken from me. We all are.

And it's okay to not have the answers yet.

It's okay to simply be sad.

Thank you for reading this, truly.

Thursday, December 6, 2012

Beautiful





Something has been happening on the walk home from school recently. Something, perhaps, even beautiful. There is an apartment complex with one of those cool "walk-up" entrances (cool to the boy at least). It's become routine for Jack to check that gate every day. Annoying, but harmless, so I concede. About two weeks ago, something changed about those stairs and that gate.

There were people sitting on them.

So, Jack told them to move (of course he did), and "Jennifer" asked if she could have a hug before she moved. My little sensory-seeker happily obliged. Jennifer squeezed him tightly and kissed him for a minute, telling her how much she loved him. Jack couldn't have loved it more. After a minute, "Linda", the other adult, said "it was time to let him go". Jennifer is a developmentally disabled adult. Linda is her nurse/therapist/aide. So Jack hugged her good-bye and we hurried home, smiles on both of our faces.

Over the next week, Jennifer was there every day after school. She often has her alphabet flash cards that she shares with Jack. She's insistent that Jack learn the Spanish words for "car, umbrella, ice cream, and apple". She lauds his intellect and smothers him with attention.

A few days ago, Linda (the nurse) simply blurted something out in Spanish (I speak Spanish). "Su hijo es diferente, no"?

And that question floated in the air unanswered for a moment.

I did my best to explain that Jack is autistic in Spanish. She is an aide or a nurse or some sort of caretaker, so she already knew. Linda went on about how smart he was, how cute he was, and all the usual nice things we say. She said he must have a lot of friends. He does, but not really at school. Everyone is nice to him, but he doesn't reach out to his peers much (he's doing better, but that's a different post).

Jennifer (who I didn't realize was listening to us, or spoke Spanish for that matter), chimed in that Jack could be her friend. She said she loved him. Jack had been showing Jennifer the latest homes for sale in the newest edition of the "Call Maya" Real Estate ad from the corner rack, and he asked "why"?

And then Jennifer answered.

"Because I love kids. You're fun. All the other kids are scared of me. When I was three I got hit by a car and it made me kind of dumb. The other kids run away from me."

Again there was silence for a moment.

Jack pointed to an ad in his magazine and said "this says In Escrow".

And her disability was never mentioned again. And I was touched. For two reasons. First, Jack didn't notice or care about her disability. He doesn't see it. He doesn't fear it. He just likes the friend.

In a bigger picture, however, I got to thinking about Jennifer. There are several great autistic adult writers/bloggers/advocates out there. How often do we listen? Jennifer told me her story, and it was tragic. It was hers, though. How often do we listen to grocery store clerk in her thirties that works hard, rarely smiles, avoids eye-contact, and clutches her "Hello Kitty" backpack. What's her story? Or the young man that my wife insists is extremely handsome that we've never heard speak a word. What's his story?

I think it's time to ask.

I am embarrassed that I never have. I have always been overly nice and patient with developmentally disabled children and adults... even more so since my son was diagnosed.

But it took a six year-old to teach me to listen.


And listen we should. You might just discover something beautiful.

Thursday, November 29, 2012

The Dope Show






Sometimes it's hard for me to admit that my six year-old son has a psychiatrist. I go to a shrink once in a while. My wife does, too, but we're adults. We choose to.

Jack's psychiatrist is fantastic. We were having a particularly bad stretch at the beginning of 1st grade this year (well documented through these blogs), and needed to open the dialog about pharmaceuticals for the boy.

Jack was diagnosed a little after his 3rd birthday (Nov 2009). We instantly threw him into ABA home therapy, OT, Speech, and pre-school. Things were going well. He was improving, for the most part, every day. We had beat the system. We had beat the disorder. And, as everyone around assured us, "we were going to be fine".

And we had done it all without drugs.

Until things changed. Jack was becoming increasingly aggressive, rage-filled, and, to be frank, violent. He spent little time in the classroom, if any. He spent a lot of time in the principal's office. And, I spent a lot of time there, too. Not a one of us had a clue what to do.

I've always seen pharmaceuticals as an "easy way out". I didn't want to "dope" my kid. The images of McMurphy in the Cuckoo's nest asylum. The Thorazine clinics of sedated patients in our public health system. The hypermedicating craze of the mid 90s. The College kids abusing Adderall story I had seen on 60 Minutes. None of these were for me. They weren't Jack's future either. Most importantly, I didn't want to tell anyone about it. Selfishly, I'd be embarrassed to have my friends and family know I was medicating my child. They were all telling me "everything would be fine", and I didn't want to let them down. So, you can see my concerns, even my disdain, for pharmaceuticals.

But Jack's behavior and aggression were starting to give me few other options. If he couldn't control his aggression, he wouldn't be allowed to continue at school... too much a danger to himself and others.

So, I called my insurance company and got a referral to a pediatric psychiatrist. That's when something amazing, maybe even magical, happened. The second name they gave me was a friend of mine from High School. I didn't go to High School in Los Angeles, so this was pretty amazing. I had a friend that could help. And help she did.

Turns out, I had no idea how pharmaceuticals work for ASD (or ADHD, OCD, PDD-NOS) kids. All of the things I would be "ashamed" of weren't true. It was my own ignorance and judgement that were holding me back.

Jack started Ritalin. Jack has not been pulled from class in the last 8 days (counting today). Jack has not had any aggressive/violent episodes in the last 8 days. Jack has only said "fuck" once at school in the last 8 days (and he mumbled it quietly to himself).

More importantly, Jack has done all of his schoolwork. He has participated in classroom activities. He even will talk to a classmate once in a while.

I believe in the merits of ABA therapy. I believe in the merits of Occupational Therapy. I believe in the merits of pharmaceuticals. But I also believe (as many of my fellow professionals and parents do not) that these things are NOT mutually exclusive. They compliment each other beautifully.

This is my point. Drugs will not work for all of our kids, but don't make those decisions without learning what they are first. I got lucky. Perhaps it was fate that I found Jack's psychiatrist. She's brilliant, kind, empathetic, and professional. My son loves her (he calls her the "talking doctor" since she doesn't give shots), and we love her, too. Thank you for walking us through this.

I didn't want to medicate my son because I was worried what other people would think... and that's a terrible way to live your life.

Wednesday, November 14, 2012

When I Paint my Masterpiece




I'm not sure if you can tell from my blog or not, but I am a professional writer. The other afternoon, I was working on the computer and reviewing a few feature film pitches I've put together. Jack comes in the room to ask me what I am doing.

On a side note, Jack knows how to make an entrance. He doesn't simply walk into a room and say "hello", he explodes into a room. It always reminds me of "Cosmo Kramer" from Seinfeld. Anyway, Jack explodes into the room and asks what I am doing.

"I'm working on some movie ideas"
"What's that about?"
"Well, Jack, this one is a science fiction movie about a world where-"
"You should write my movie." This really catches my attention.
"A movie about you?" I ask.
"No. Make a movie I want to see."
"And what movie is that?"

So, throwing it out to the world. Here is Jack's idea to Hollywood. I will present it in pitch form, because there would be way too many (sic)s if I quoted him verbatim. It should also be noted I asked him a few follow up questions to fill in the holes in his story.

My son told me to write a movie for him... the anticipation was killing me. What the heck would he want to write about.

Capitol Baby - by Jack Capell - a six year-old child "on the spectrum"

The good people of Iowa (his favorite state???) accidentally elect a baby to be President. So, the baby is forced to lead the Nation, and mayhem ensues.

We worked through a few of the details. Maybe there was a write-in candidate with a similar name. Maybe it should be a Senator instead of the president. There's the problem of minimum ages of elected officials to get around, but as Jack said, wouldn't it just be funny to see a baby being president?

He exploded out of the room.

I sat and thought to myself... it's not the worst idea I've ever heard.

A smile came across my face as I thought, and realized, that somewhere in the twisted network of firing neurons he calls a brain, was the true thing that makes us human, the thing that make us superhuman, the thing that make us (ahem) neurotypical...

Original Thought.

I think the first draft of Capitol Baby will be in his Christmas Stocking... and coming soon to a theater near you.

Friday, November 9, 2012

The Incredible Hulk




Jack has recently told us that his favorite superhero is The Hulk. I worked in comic books for many years and have had many a debate with Jack about which superheroes he is allowed to emulate. He can never be Superman, Spiderman, or the Hulk, because they are mutated or alien. Exposing yourself to that many Gamma Rays would more likely give you cancer than super human strength. Batman, Iron Man, Rorshach (one of The Watchmen) are human beings that have overcome adversity to become superhumans. You could be Batman if you worked hard enough (and had enough money as well). But he likes The Hulk.

The Hulk is a conflicted dude. My son is a conflicted dude.

One of the things that Jack is working on with his Occupational Therapist is energy awareness. His "engine" is running red (too fast, rage, overstimulated, etc.) or green (level, calm yet not sedated) or blue (low energy, tired, unfocused).

He was tasked to make a meter for his "engine" and this is what he made:
It's important to mention that he chose to use The Hulk. He could have used smiley faces (which most kids chose) instead.

It got me thinking. The Hulk is a character that is conflicted. Bruce Banner turns into The Hulk when he cannot control his rage or anger (in the later comic book mythos, he has learned to, but let's not start that debate... although I would love to have it with you). So, enraged, he turns into this hulking beast that can destroy anything. A hulking beast that has the urge to simply destroy for the sake of destruction... ever heard "Hulk Smash!"?

So, I get the red section. The green section contains something interesting... friends. The Hulk is social enough to have them. In the sticker Jack chose, he is surrounded by them. Jack sees the "proper energy level" as a social situation. To enjoy others company, and be enjoyed.

The blue section is troubling, or at least sad. He didn't choose a picture of Banner. He chose a picture of The Hulk alone... solemn. Sadness and solitude are the same thing to my boy. Even more interesting is he sees solitude as the opposite of rage.

Jack struggles so much with social norms. It goes with the territory, I guess. However, he sees having friends, conversations, or simple interactions as the level he desires to maintain Who knew an art project could be so revealing about a child's entire psyche?

This was his Halloween costume this year:
Trick or treating with his gothic vampire Betty Ross. The one person who can keep The Hulk mellow, or "in the green".

I get it. I understand why you want to be The Hulk. Because In the end, with the right guidance, you are indeed incredible.

Monday, November 5, 2012

More Than Words



In the interest of full disclosure, this blog will contain profanity.

"Fuck" is a great and versatile word. Seen here:


Fuck is not so great and versatile a word from a six year-old. So that being said, our house has been infused and inundated with the word "fuck". We're not sure where he picked it up, but he's got it. He's learned that it gets a great reaction... especially at school. It has become deeply troubling and embarrassing to us as parents. Now we are those parents. We've got that kid. This started about a week and a half ago, and is fading out (thankfully), because we simply ignore it now. No reaction at home drives the boy crazy. I wish we had tried that at first rather than drawing so much attention to it the first few days thinking punishment, guilt, or misunderstanding would help. 

So here's the anecdote that will make you laugh, warm your heart, and appall you at the same time.

On Thursday morning, the day after Halloween, Jack decided it was a great idea to strike up a conversation with one of his classmates about the amount of candy he received. Back and forth conversations not guided by an adult are rare, but do happen once in a while. "Sally" is a sweet girl that has always taken a liking to Jack. She's one of those "what can I do to help?" six year-old girls that every class has. Thank Heaven for little girls indeed. As an added bonus, she's the only blonde in his class. Daddy approves. Sorry, Baby Love (There are no red-heads in his class like his mama).

I digress. During this wonderful interaction about the candy another little boy walked right into the conversation and hit Sally. Yep. Socked her right in the face (this is a Gen Ed class, full inclusion contains some awesome characters, doesn't it?). Sally started to cry and the aide instantly dealt with the little boy. So, as Sally is crying, Jack, my boy, asked her why she was crying. 

"Johnny hit me"
"Are you sad?" he asked. Hooray! My son recognized an emotion in another!
"Yes" Jack placed a hand on her shoulder, sweetly. Yes! Joint attention and empathy!
"You want me to fuck him up?"

Yep. That's what he said. She tearfully shook her head "no". 

I don't think Jack knows what "fuck him up" means. I think he's scripting, but not sure. 

But I do know he recognized emotion in a classmate, I do know he felt empathetic, and I do know he problem-solved. Take the word "fuck" out of the equation and it was the greatest conversation he's ever had. Guess what? I was silently proud. Yep. I was. 

We're working to get rid of the word. We're also working to get that level of connection to a friend.

I told my wife and she thought the story was appalling, yet funny. She said she was also proud of our chivalrous son in a strange way. I don't recall Malory or De Troyes writing about Lancelot offering to fuck up Modred for the love of Guinevere in their tales of courtly love, but I get the connection.

It is absolutely inappropriate for a six year-old to drop the f-bomb at school. 

But this was his reward the next day:


The entire way home.

And nobody had to get "fucked" up on the way.



Wednesday, October 24, 2012

Harder Than You Think




This post is about the R word... No, not that one, Regression.

Regression is a normal part of any rehabilitation process. We've all heard the old saying of two steps forward one step back, and in no place is it more apropos. My son hit a major regression this summer that extended dangerously long into his first grade year at school.

When Kindergarten ended, he was a superstar. Our annual IEP happens to be near the end of the school year and leaving the annual last year none of us could have been prouder. I remember a feeling of triumph, accomplishment and pride when the school psychologist announced to us that she felt Jack might not need his aide next year. We had no behavior goals in the new IEP. Let me write that one more time. We had no behavior goals in our new IEP.

We had done it. We had beaten autism. My son was going to be "normal" by first grade. Screw all those people that said it couldn't be done. Screw all those people that had "misdiagnosed" him. My wife, myself, and mostly my son had put in the necessary hard work to overcome this so-called disorder.

And then the regression started.

It was gradual over the summer. He went to summer school. He went on vacation for a week. He went to a day-camp at a special needs school. Behaviors getting progressively worse and worse. Mastered skills slowly slipping away. Stims becoming more and more physical, more and more aggressive, and, quite frankly, more and more alarming.

By the time first grade had started, we were back to where we were at the beginning of Kinder. Jack was removed from his General Ed class daily because of behaviors, or disruptions, or aggression. All the "experts" gave us the usual answers. "It's a tough transition", "First Grade is more demanding", "It's just a phase". But they were the same people he knew in Kinder. They were secretly as confused as we were.

Then rock bottom came. I got called to pick up Jack from school... again. This was becoming commonplace. This time, however, his aggressive outbursts had sent his BIA (one-on-one aide) to the hospital. I'm using hyperbole for effect here. She was fine and it was incidental contact that lead to the injury, but the fact remained the same. I was called to the principals office to take him home... again.

It was in that final meeting I said the words I regret the most. I am embarrassed to admit it, but I looked in my son's eyes and said "Jack. You are embarrassing yourself. I know you are capable of so much more"

I had done it. I had publicly blamed my son for his actions. I was the one who had publicly shamed him. I was the one who forced him to wear that scarlet A on his chest. It was me, his biggest champion, that had expressed my disappointment.

And we went home... silently judging each other.

I feared CDD (Heller's syndrome). I thought we were losing him for good. I thought I may have only had a few weeks left with him here. I remember later that evening, staring into his eyes while he stimmed through flipping the pages of a picture book, thinking he was gone. The sound of David Bowie singing "Can you hear me Major Tom?" playing over and over in my head.

And I cried. For me. For my wife. For his sister. For my sweet, sweet boy.

He came around. School started to get better. He started to spend more time in the class... "accessing the learning environment". The aggression died down. The behavior improved. The skills slowly returned.

My friends, it never ends. Parenting never ends. To quote a favorite movie "you never cross the goal line and get to spike the football".

My wife saved me. She was the one that came in and took over. She decided she was goiong to right the ship and stay the course. Our in-home ABA therapist saved me. She didn't panic. She stuck to the plan, not only for Jack, but for me, too. The school saved him. They didn't give up, when they easily could have. I am eternally grateful to all of them.

If regression is a bitch, then disappointment is her sister. You might flirt with her, but you don't want anyone to know.

Lean on those around you. Take advantage of that friend that is trying to lend a hand. Tell your spouse how you feel. Tell your doctors that you're scared. Allow yourself to be sad. Stay the course with what you've chosen. Admit you are human. Admit you are fallible.

Above all else, don't forget to love and never, ever, give up hope.

None of us are in this alone.

Sometimes parenting is harder than you think.

Wednesday, October 17, 2012

Bicycle Race






First grade has not been easy. We are two months in and we are finally spending quality time in the classroom. We are no longer having aggressive or violent outbursts. My wife and I are trying our hardest at home to keep up the academic skills that he has been missing by spending so much time out of the classroom, and it's very hard.

We are so concerned these days that we may have pushed for bad choices regarding placement. Let's rephrase that to "inappropriate" choices regarding placement. We are beat over the head with phrases like "least restrictive environment", and "access to the learning environment", and "disruptive behavior"... so much so that they have almost become pronouns in our house. But there is good news. We are, at long last, moving forward again. We took about 8 steps back, but we're 3 or 4 steps forward.

That's all I want to say about Jack's recent regression right now.

Here's what I want to say about Jack.

Jack turned six about 2 weeks ago and for his birthday, I bought him a bike. Jack has very poor proprioceptive processing skills and presents as extremely clumsy. Most children can ride a bike with training wheels around 4 years old... some earlier, some later. There are so many moments that we as parents of special needs children will be robbed of.

But not this one. Fatherhood may not be exactly what I expected it to be. I figured I'd have all those great Americana moments that all fathers have.

And here it is. I got to teach my son how to ride his bike.

So, what do we say when Autism comes to take away another memory?

"Not today"



That's my son. Riding the fuck out of his new bike.

Thursday, October 4, 2012

President





I've been reading all morning about how wonderful it is that President Obama mentioned autism in the debate  with Mr. Romney last night. I agree. Wonderful indeed.

Huge strides have been made in the last four years in autism awareness, research, services, and public perception. The advocacy groups are growing in numbers and funding. We're crashing down School Districts, City Halls, and State Capitols everywhere. We are making progress. Insurance reform for Children with Autism moves forward every day.

But that is on a local or state level.

Mr. President, you mentioned increased services, research, and funding for autism in the debate last night. I "HOPE" you mean it.

Because this is the last time you mentioned special needs.

http://www.youtube.com/watch?v=2HOBTUCv4o0

That was a little less than four years ago...  And you have done nothing to make up for it.

Our community is strong, powerful, empathetic and votes.

I'm glad inspired you included us in the debate (heck, the other guy didn't even mention us), but I "HOPE" you truly are interested in moving "FORWARD", and not just trying to get our votes so you can ridicule our children on late night talk shows again.

We will give you the ball again... let's see if you can medal... Special, Para, Junior, or Olympic-style.

Thank you.

Monday, October 1, 2012

Who Are You?





I am a stay-at-home-dad raising a child with high functioning autism. I am many other things, but that statement has come to define me.

We constantly fight to not have my son labeled by his disability, but forget to fight for ourselves. Autism should not define my son. Autism should not define me.

I think a lot of us forget this for ourselves. I talk about my son and his disability all the fucking time. My wife has to remind me that people care about Jack, but not as much as I do, so keep my answers brief and to the point when asked how he is doing. When someone wants to have a long conversation, you'll know. I apologize to those of you I have cornered.

I write a blog to talk about this. Go back and read some articles if you want to hear about Jack. Check out the Facebook page if you want quick updates, or witty stories, or complaints.

My sister called for my birthday last year and asked how I was doing. I told her that Jack was doing really well in school. "Great, but how are you doing?"

I exist beyond my son.

Today is my 7 year wedding anniversary. Those of you that know me, also know that I married up... way up. I am a damn good husband.

I studied English and Screenwriting in College. I have been published (and paid) numerous times over the years. I am a damn good writer.

I received an email from an old friend responding to one of my posts reaching out to help. "You have helped me through so many dark places in my life in the past", is what she said. I am a damn good friend.

I eagled the 15th at Scholl Canyon Golf Course. I'm not a damn good golfer, but I'm improving.

This blog is about raising a child with autism. This is an appropriate place to discuss it. I am a damn good parent.

I am a stay-at-home-dad raising a child with high functioning autism.

I am.





Friday, September 14, 2012

I Still Can't Say Goodbye




  FROM THE ALBUM "CHET ATKINS, C.G.P."



One of the reasons my father always told me that he became a pediatric rehab physician was because he would have a relationship with his patients for 18+ years (potentially, of course). Teachers, therapists, even family come and go in our children's lives. It's a natural process. It's part of growing up. It's part of maturing. It's one of life's inevitable disappointments. People leave. My son refuses to say "good-bye" to people because he thinks that "good-bye" means you'll never see them again, so he prefers "See you later", or "Keep it real" (I taught him that one). Children have difficulty moving on, especially those who might not be the healthiest emotionally already.

And parents do, too.

We've been having a difficult transition into first grade. As with any rehab process, you just need to keep moving forward. And we're all trying. Lord, we're all trying. One of the biggest consistencies we had going  since this all started (Jack's diagnosis - shortly after his 3rd birthday), was Ms. "Sally" (not her real name, so I'm going to stop using quotes, okay?. Okay). Jack went to a blended pre-school. He was doing well and there was one behavioral aide that seemed to take a liking to him. She was in the other classroom, but always had an anecdote, or piece of advice, or a smile for us at pick-up time. So, we were delighted when we asked for her as Jack's one-on-one into Kinder... and won. She was young, energetic, smart as hell, and gave a shit. Something Jack had done was endearing enough to Ms. Sally for her to accept. We had won the BIA lottery. She was with him at summer school, Kindergarten, summer school again, and First Grade.

But first grade didn't go so well and we had to say good-bye to Ms. Sally. Except, the way it worked out, we never got the chance to say good-bye. So here goes...

Ms. Sally, Jack's downturn is not your fault. You could not have worked harder for him. We've known you for over 2 years (a lifetime in this business) and you are the number one reason for his successes. You spent more time with him than anyone. And you remain his biggest champion. We can not thank you enough for always remaining positive with him. Our last conversation was walking back to his classroom after he had forgotten his backpack. I told you that I was losing hope. You asked me not to, because you hadn't. It's so hard to not meet you every morning. It's hard to watch Jack scan the schoolyard and start to stim every morning. He doesn't express this well, but he misses your open arms. He misses the comfort of starting your day with familiarity. The way we feel weird if we didn't kiss our spouse good-bye before we left for work, or didn't end a conversation with "love you".

We know how much you loved him. We may never know, however, how much he loved you. But Julie and I do. Thank you for helping him. Thank you for not giving up hope. Thank you for not mentioning it the times you knew I had been crying. Thanks for the smiles. You are an exceptional young woman. Your compassion without condescension will serve you well. We are forever humbled and indebted to you, and love you.



This blog was intended to be about emotionally challenged children learning to say good bye, but it's clearly about us as parents. Therapists are going to come and go, we've had several who we were very close to... some are even in this blog community. Teachers are going to come and go, we've had several who we were very close to... some are even in this blog community.

But Champions stay forever.

And I still can't say Good-bye.

Keep it real, Ms. Sally, Keep it real.