Thursday, December 4, 2014

A Tale of Two Turtles


So this is not autism related at all but it's a funny, heartbreaking story nonetheless submitted entirely for your entertainment.

We spent the Thanksgiving week in Lake Tahoe, CA. It was great to get away and the kids both did great and had a great time.

On Tuesday, I took Jade (4) to the arcade at the casino and she won enough tickets to buy four erasers that are shaped liked turtles. Any of you that frequent arcades or Chuck E Cheese know ow frustrating the prize counter is. I mean we spent about $20 to win enough tickets to buy four... ERASERS!?!? You could probably buy a three-pack of these little chingaderos at the Dollar Store, but, no she earned them. She pressed the right buttons and had all the skee-ball skills to win enough tickets to buy 4 turtle erasers. She named them. One was pink, one blue, one green, and one yellow/orange. The shell comes off so you can have two, count them two, erasers if you need them. But, once again, they were hers. She earned them. She gave them backstories. She decided to love them and they turned out to be well worth the $20 in entertainment value.

So, Thursday night rolls around and we are going to drive up to Reno to have Thanksgiving dinner with the in-laws. Jade asks if her turtles can come with. Of course they can. I tell Jade they can stay in my special pocket (the lower, seldom-used pocket on a pair of cargo shorts). I'll keep them safe for the drive to Reno. Reno is a dangerous place, after all, and turtle erasers deserve protection beyond their hard gummy shells, right?

As it usually goes with four-year olds and their fathers' suggestions, the pocket was not an acceptable means of transport. "It's too dark" "The turtles are too scared" but her complaints had a fatal error in them. She had already established that the orange turtle was clearly the leader and most brave of the bale (I looked that up). So I told her that the orange turtle could talk them in to it. He turned to the rest of the cowering turtles and Jade made a speech to the cowering turtles of bravery and confidence that would make Braveheart fans proud. So the turtles entered the lower pocket and were not heard from for the rest of the evening.

"They will be fine, Jade", I reassured my doubting daughter.

***

The next morning as I was brushing teeth, my wife set something down that she had found in the dryer.
 
I thought nothing of them.
 
We went back to Reno for the day and when I was playing with the kids outside, Jade pulled this out of her backpack.
 

 
 
"Daddy, where are my turtles?"
 
As I fumbled in my pocket for those funny looking erasers my wife had handed to me, it hit me. I never took them out of the pocket... and they must have gone through the wash... those funny-looking erasers must have been...
 
"WHHHAAAAAA! What happened to the turtles!?!?"
 
I had pulled the heads out of my pocket and Jade had seen them.
 
She wailed.
 
"Daddy! What happened to the turtles?"
"I accidentally put them in the washing machine, Jade. It'll be okay"
"Okay!?!? That's their heads!?!?"
 
She became a bit more hysterical. I tried my best to reassure her.
 
"Look, Daddy, that one doesn't have a mouth anymore. He couldn't scream for help"
 
I started to feel really bad for her.
 
"Jade, it'll be okay. It was an accident"
 
She simply sobbed for a moment.
 
"But, daddy, they were so scared. Remember they didn't want to be in the dark?"
 
And finally the words that haunt me still:
 
"And you said they were going to be okay"
 
***
 
It's okay folks. A friend of mine found them on-line and I ordered Jade a dozen (for only $4.99... can you believe the profit margin of that damn arcade?). I felt so bad for her. I did, indeed let her down.
 
But a few days later, I found myself so impressed with her.
 
You see, Jade is only 4. I am sorry I was the one that committed the reptilicide, but she cared SO much. She had created back stories. She established a leader. She showed a true empathy.
 
And she was so, so very sad for them.
 
And she is only 4.
 
These are things we have worked on with my son for 5 years now. He has such difficulty taking perspective already... true empathy will hopefully come with more maturity, but he still has such a poor understanding of the subject. I found myself sad for him.
 
So I told him the story. He sat for a moment. I expected little or no reaction. Finally:
 
"Dad, is Jade sad that you killed her toys?"
 
Yes, my boy. Yes she is.
 
"Did you know that they ate turtle soup on Scooby Doo goes to Zombie island?"
 
I did not know that.

Friday, November 7, 2014

My Autistic Son Made Me Throw Him Off A Bridge Today

I was an 11 year old boy when I learned the word filicide. Her name was Erin Hollohan. She went to school with me. She rode my bus. She was the only other redhead on my bus, and we had somehow bonded over that... like we were going to need each other through the next few years. She was in my class.

She was not autistic.

Her father put a bullet in her brain one summer evening.

And I never got to tell her good-bye.

Here is a link to an article

On Tuesday morning, Nov 4, 2014, I was a 40 year-old man sitting at my table when I read a news story about a mom in Oregon who threw her 6 year-old son from a bridge into the Yaquina Bay. The body was recovered almost instantly. The mother arrested. The boy was autistic.

Her is a link to an article

Here are two examples of filicide. I hope you read the articles, or are already familiar with them, because there is a key difference in them. The neurology of the the victims is not mentioned in the first one.

Susan Smith, Marcus Wesson, Andrea Yates.
Gigi Jordan, Kelli Stapleton, Jillian McCabe.

Three murderers where the neurology of the children (16 total!) is never mentioned.
Three murderers (or attempted murders) where the neurology of the children (2 total) is mentioned.

Filicide - noun - the act of killing one's son or daughter.

***

Today I find myself wanting to break my silence on this topic. After McCabe threw her boy (London) from a bridge, I could no longer stand on the sidelines of what has become quite the controversy in my community. I am raising an 8 year-old boy with autism. His name is Jack. Life can be difficult at times. Sometimes I even need a break. Sometimes I will walk out of the house and mumble to myself all the way around the block. Sometimes I will call my mom, or a friend just to talk. Sometimes, I will feel sorry for myself. Sometimes, I will write a blog or post something on Facebook because I really, really want someone to say "You're doing a great job". Sometimes I want validation. Sometimes I want to escape. Sometimes I feel like my life is harder than yours, and sometimes I don't.

I have NEVER wanted to throw my son off a fucking bridge.

So starts the great divide in my Autism community. Sometimes in whispers and sometimes in shouts the community will say "I get it"; "We all have a breaking point"; "She just needed more services"; "How can we reach out, so that this won't happen again!?"

And it's usually tempered with "Let me clearly state, I don't condone murder, but..."

But what?

***

In cases of filicide, the neurology of the victim is irrelevant.

In fact, mentioning it is harmful to our community. It suddenly becomes an outlet, an excuse, a disorder, an anxiety that accomplishes nothing more than blaming the victim.

The Neurology of the perpetrator is the key and, eventually, what will be on trial... both in court and in public opinion. When Susan Smith drove her children into a lake nobody said "Let me clearly state, I don't condone murder, but her boyfriend really was wealthy". When Marcus Wesson killed 9 of his kids, nobody said "Let me clearly state, I don't condone murder, but those kids WERE going to be exposed to a false God". Nobody said "I get it". Nobody said "Have you walked a mile in their shoes?" Nobody said "Judge not lest ye be judged".

The trials and news reports simply and quickly and appropriately attacked neurology and psychology of the killers. Clinical words like psychopath, sociopath, and narcissist were bandied about. Less Clinical words like crazy, insane, and monster were bandied about as well.

The most recent of these murders (McCabe) was presented to me in an article that ended with these words : McCabe asked for help before committing the most horrible act a parent can commit. Friends and family who read her plea could never have fathomed that this would be the outcome. As parents, we can take something away from this tragedy: Watch and listen. When a fellow parent begs for help, don't hesitate to reach out.

***

My community has made this a rallying cry for better services, for more funding, for more awareness. Every time a "solution" is brought up, however, I cringe at the devaluation of London's life a little bit more. One more person tacitly saying that "they understand". One more person blaming the victim.

Erin Hollohan was killed by her father 28 years ago. Never once have I heard something like "If only Erin had done better in school, he wouldn't have been so unhappy".

The fight for better services and support are very important to our community, but not on the backs of our murdered children.

There may very well be a monster in the room, but his name is not Autism.




Wednesday, October 29, 2014

Seiz(ure) The Day!

My wife and I have an 8 year-old boy with Autism. We have been through the wringer, experienced the highs and lows, and triumphed regarding services for the boy. State Regional Center, Insurance Company, School District, physicians, psychiatrists, and aide workers... we've seen them all. Our journey with my son is not a tale of woe of lack of services (yet), but rather a careful weaving and negotiating of which services are the most appropriate. Through it all, and looking forward, we are confident that we have the tools and Los Angeles has the resources, and we have the patience, and my boy has both the steadfast determination and endearing nature to make this journey the best it can be.

We are, at long last, and confidently, hopeful.

***

My wife was the first to say something. She came to me and said "have you ever noticed the baby girl rolling her eyes? There's something I don't like about it."

I started noticing it, too.

***

Absence seizures (formerly called petit mal seizures) affect about 1 in 500 people and are most common in children aged 5 to 15. Sudden increased electrical activity in the brain neurons, result in what is commonly seen as a staring spell of unconsciousness, usually lasting 3-10 seconds (more or less in some cases). They are usually harmless and mistaken for "daydreaming" in school aged children. About 70% of the time, the child simply "outgrows" them. There are very successful medications to eliminate them entirely with few side-effects.

About 25% of the time, however, they can develop into tonic-clonic (grand mal) seizures. Tonic-clonic seizures present more the way that most of us think epilepsy looks (brain activity accompanied with movement, convulsions, impaired speech, etc.). Untreated, they can, in rare cases, lead to permanent brain damage.

***

All of that information was from WebMD. I found pretty much the same information on Hopkins Medicine, Mayo Clinic, NIH, and even Wikipedia.

Where I didn't find any of that information was from my daughter's neurologist.

***

My wife refuses to take our daughter to the dentist. Not because she has any issues with dentistry, but rather she can't take her baby crying or scared, and, let's face it, the dentist can be a scary place. She has no problem taking the boy, however. So, somewhere in the parenting responsibility negotiations I drew the "taking the baby girl to the dentist" straw.

I could talk about that forever, but I need to speed this up.

So, we took Jade to her pediatrician and told him we were seeing what we thought were seizures. He agreed. He asked us to try to catch it on video and put in a referral to a neurologist to our health insurance company. There are no pediatric neurologists in our HMO network, so they would find one that accepted our insurance. It was approved. An appointment was made.

And we took our baby girl, our precious pride and joy, our perfect angel, here:


No. We did not. This "doctor" was not even licensed to treat children. An angry phone call was made and we were sent to another neurologist.

The office was a little nicer, yet still filthy. The doctor was friendly. He was sweet to Jade, and she was an awesome patient. He did a simple EEG and it confirmed the seizure activity. He told us this goes away 100% of the time and take these meds (wrote a prescription).

"What about side effects?" "What are seizures?" "If they are harmless, and go away 100% of the time, why do we medicate?" "Can you tell me more?" Were just a few of the questions we were asking... that went unanswered. He told us to start giving her the meds and come back in three weeks and he can answer all of our questions then...

"But, how do we dose up the meds"?

I was handed a piece of paper.

"I have a lot of patients to see today. Google this"


So, we will not be going back there either.

We called the insurance company again. We (with our pediatrician) have requested a "real" neurologist... in the neighborhood, not the cheapest quack on their payroll. We will have a "professional" EEG done at Children's hospital Los Angeles and do our on-going care with a new neurologist.

That has not been approved as of this blog.

Meanwhile... The seizures continue for this little angel.



***

As is the case with most of my blogs, I fully intended to write about how fucked up and wrong access to health care is in our country... But I'll save that because I want to end this about something else...

***

Jade, I promise you that your mother and I will get to the bottom of this. You are our precious baby girl and you deserve better. I am neither scared, nor intimidated, by this impending health care battle. You will thank your mother and I...

But thank your brother first.


That's right. The same one you jump for joy to see.

He is the one that has taught us all how to fight.


Thursday, October 16, 2014

On Being Neurotypical

In our community we often use the term "Neurotypical" (or NT) to mean "Not-Autistic". The term "Neurotypical" means having a typical neurology.

Jack has a sitter three days a week after school. Almost a year ago, we went to an agency (Care.com) looking for someone to "have fun" with Jack 2 or 3 days a week after school. At the time, he had therapy 5 days a week in addition to school and we felt he didn't need another therapist... we just wanted someone to have fun with him... he deserved it.

We interviewed several sitters, found one we really liked and the young lady had to decline days before she was to start. So, I re-posted the ad, and went to a bar to watch a football game one Saturday afternoon. I received a new response... not only was she interested she was in the neighborhood and we met 30 minutes later... and we had our newest sitter.


And the jokes started instantly about how much she looked like us. "We didn't know you and Julie had an older daughter" "Is D your sister or Julie's?" "She's too young to be Jade's mom" and we laughed along.

What we didn't expect was to gain a family member. What we really didn't expect was for Jack to gain a role model.

You see, D is an adult living with ADHD. She told us when she interviewed with us and Julie and I had the same misguided thoughts we had before about adults with ADHD. But this was different. It wasn't a buddy of yours forgetting where their car keys are and saying "must be my ADD" or not remembering a name of a friend and saying "must be my ADD" or finishing one of your sentences and saying "must be my ADD". She was not self-diagnosed and, in many ways, was very like Jack.

We had a lot of challenges with Jack taking his medication back in the day. One of his concerns was that no other kids took Ritalin to go to school. He discovered that Billy Joe Armstrong (lead singer of Green Day, and his hero) did, and that worked for a bit. But then he discovered that D did as well. Now he had someone who understood. We encouraged the two of them to talk about it as much as possible.

And they did.


We weren't looking for a therapist... yet we found one. She often asks us what she should do in situations. We told her her instincts are always right... because they always are.

They're rough on each other at times. I've listened to them argue through homework. I've seen him sent to his room for bad language. I've counselled D when she didn't know what to do.

But there is always a love and understanding between those two that I never understood.
And perhaps I never will.

***

A few weeks ago, D posted something very simple on her Facebook page... one word really.

"NeuroAtypical"

***

I am learning through her what I can not through myself. She is very open about her own diagnoses. I'm learning what adults with ADHD are. I see the signs once in a while. I test her once in a while. I watch her use self-focusing techniques (she might not know that I see them). I watch her guide and inspire my son.

I pick her neuroAtypical brain all the time.

Most importantly, I watch the two of them enjoy each other.

Julie and I had the pleasure of meeting D's parents. They came over for a brunch one weekend when they were in town. I don't think we thanked them enough for how wonderful a job they did raising her. They told us how much D was like Jack at that age. They may have given us a glance of our future with the boy.

And for the first time in a long time... Julie and I were hopeful.

If only.

***

There is so much to learn about our kids from adults on the spectrum...

The neuroAtypical spectrum.
 And Yes, we ordered D her shirt too.

Thank you for loving my boy and teaching us so much.

Thursday, September 25, 2014

10 Unusual tips for your next IEP

A few months ago I vowed to stop writing blogs that were about the same old stuff that every blog is about. I vowed to only write about things that were different, or underrepresented in the autism or special needs community. So, today, I write the "Tips for a successful IEP" blog that can be found in hundreds of places... I hope all y'all can take something new away from this.

***

Ahh, the annual IEP. The guillotine of the special needs/education regime. Anyone who watches Judge Judy or daytime court TV knows this: The lease is always right. So, here we are, parents, not lawyers, not educators, not politicians, responsible in part for writing the document that is going to be seen as "the lease" for the rest of our child's years in the education system. Amendable, yes, but a document that will be set in stone, and referred to as the bible for your son or daughters education experience for 12+ years? Intimidated yet? Fell guilty yet? Anybody told you "don't fuck up" yet? It's an amazing responsibility.

For what they are worth here are a few tips that come from an advocate for parents in IEPs.

ed. note - All States handle IEPs slightly differently. Most of these hypotheticals or examples come from California, so you may need to check if something is slightly different in your State or Country, but all the suggestions will be vague enough to apply to the process.

1. DO NOT READ BLOGS ABOUT IEPs - Funny that I would put that in a blog about IEPs, but here's what I mean: Do not go into your IEP meeting looking for, or expecting a fight. Before I wrote this I searched "IEP blog" and read the first five results. They were all basically the same thing (some better written than others) "I had to fight the school for more services. They are stupid and have no idea what they are doing. But, I outsmarted them. Professionals my ass". What I didn't find was something like this "I can't wait to go to our IEP meeting today. It's always so pleasant and the district does a really good job incorporating my ideas with theirs". The truth is... Most IEPs are very pleasant and collaborative. Of course, conflict exists at times, and these "warrior stories" are entirely true, but they really are the minority. Yet, nowhere near the minority of blogs. Always go in with this attitude... Yes, you (as parent) are the most educated person in the room about your child, but that doesn't mean that the school is "stupid". Be open and always assume that EVERYONE in the room has the child's best interest at heart. You'll be surprised where really good ideas might come from.

2. KNOW YOUR RIGHTS - Did you know that you (as the parent of a child with special needs) have an amazing amount of rights? Way more than an NT parent in the same school. Read the Americans With Disabilities Act, The IDEA, and No Child Left Behind. Hot damn we have a lot of rights. They are long and boring and often written in legalese, but at least read the wikipedia article about all three. You will be surprised how much a school HAS TO DO to provide that ever looming FAPE (Free Appropriate Public Education).

3. NEVER SIGN THE IEP AT THE MEETING - Your IEP meeting was beautiful. You received way more services than you anticipated. Take the IEP home and sign it the next day... just in case you wake up that night and say "Shit! I forgot to mention bathroom access". You (the parent) have the right to amend the IEP before signing but after the meeting... the school or district does not.

4. LEARN YOUR ALLIES - Most of these tips are written for elementary aged IEPs (Grades K-5 or 6). You will likely see several of the same faces for many of those years. You've noticed the speech therapist really has taken a liking to your son... USE THEM! Additionally, if too many members can not make the IEP or send a replacement to the IEP meeting... re-schedule it. It is a very weak position to be in when nobody in the room knows your child or has worked with them minimally. Understand that shit happens and people have to cancel, but temper that with how many people are going to be there that need to be there.

5. BRING COOKIES - They never hurt.

6. BE OPEN TO LISTENING - This is especially true for 1st IEPs. I had a conversation with a friend of mine who is an attorney for school districts and I asked him "when does the district get their attorney involved". The answer was "when the parent hasn't given the district a chance". Sometimes we as parents have decided what is right (which may very well be) before we've given the school a chance. I walk in and say "You diagnosed my child with autism and XYZ Academy is the best private autism school in Los Angeles. Public schools suck. You're going to pay for my my kid to go to XYZ Academy." In the first IEP meeting ever??? If you're two or three years into the journey with your district that may very well be the case, but if you go in expecting due process at your initial meeting... you are going to have a very, very tough road in front of you. About those private autism academies... research them really well before you go down that path. Some are wonderful, amazing, expensive schools. If only we all could afford it, right? Here's a secret, most of the students there are on the district's dollar, not some wealthy elitist parent. Private schools for autism are often not what you think (No, Jaye they are, XYZ academy has 20 graduates working at JPL!!!) But so does your district. Sometimes, I admit, the private academy is the correct route (it's called "non-pub" for non-public in IEP circles) but they are usually for the option of two types of kids with autism... kids that are so high-functioning that they are a danger to themselves or others and kids that are so low-functioning that they are a danger to themselves and others. The vast majority of kids on an IEP would not fall into that spectrum. On the other hand, if you can afford 20-30k a year in tuition... look into it.

7. A DANGER TO THEMSELVES OR OTHERS - Always remember that this is the most important and/or powerful and/or scary phrase in the world to both a district and a parent. Only use it if it is absolutely true (sometimes, it is). This phrase carries tremendous weight (both legally and emotionally) and should not be used liberally.

8. MEET IN THE MIDDLE - So, let's say you (parent) feel your kid needs 2 hours of speech therapy a week and the district says you only need 1. Ask for 1 1/2 and agree to meet again in 3 months to see if that was working. If the results were super, you'll get it extended or increased, if it proved to be pointless, you can start looking for other alternatives. Basically, use the district's mantra against them. I said before that the district will complain that you didn't give them a chance... well here's their chance. Don't buy the line "setting up the child to fail". Always shoot for the highest level and work your way down. If you start at the bottom (lowest expectation) you have little to fall back on. Want an example? You child is starting Kinder with the district suggesting special day placement with general ed push ins... demand general ed placement with special day pull-outs and agree to meet again in three months to re-evaluate. If it isn't working out, the child will get what they offered in the beginning... If it is working out... Everybody wins the "Least Restrictive Environment" race, right? Start at the top of the ladder and be willing to work down, don't start at the bottom and force yourself and child to climb. Side-note here, more and more districts (at least in California) are going to full-inclusion for ALL students. This is a good thing. Ask your IEP team if they are a full-inclusion district or are working toward one (an advocacy piece for another time).

9. ACCESSIBILITY - Just like "Danger to themselves or others" this is a hot phrase, however, this one you should use liberally. If there are true accessibility issues at the school, by all means bring them up and pressure the school as much as possible to change them (ie - no wheelchair access. drinking fountains too high, no accessible bathrooms, etc.). Remember I told you to familiarize yourself with the ADA? This is why. Here's a secret tip... misuse this phrase to get what you want. Another popular phrase in IEPs is "access to the learning environment" which is not the same thing as ADA covered accessibility issues, but most IEP members don't know that and hear "accessibility" and think they are going to be sued. So, I give y'all permission to misuse that phrase... unless the district's attorney is there, cause he or she will call you out on that shit. As a side note, real ADA accessibility issues are NEVER acceptable in schools. If you are having them, and not receiving a response to correct them, contact a plaintiffs attorney on behalf of your child. There is money and fines involved, so you can usually find one to take the case for free. The ADA is very specific about correcting these issues for all Americans with Disabilities... do not be intimidated or feel like you're being the dickhead that sued the school for a wheelchair ramp. Be proud that you are the dickhead that is suing the school for a wheelchair ramp.

10. BRING BOTH PARENTS - I always get a bunch of negative comments when I write this one, because I'm usually saying bring Dad. Dads (or father figures) are less present at IEPs than moms. They are. Dads are not necessarily more intimidating, but a united parental front is. Every time I write this on my blog (bring dads to IEPs) I get a ration of shit. "Dads aren't better at this than moms" Gender roles don't matter" "That's just eye-rollingly stupid" I've heard it all, and I'm sure comments will follow along the same lines with this one, but hear me out. Bringing Dad gives you another ally! I'm fairly certain most men reading this already attend their kids' IEPs (otherwise why would you be reading special needs blogs, right?), and I fully understand that Dads aren't always around or available, but even if they say nothing, Dads... you NEED to go to these things. Your child needs you to go to these things. The only two fights Julie and I have had in our marriage were about IEPs. That's it (she yelled at me for not doing the dishes once, but that was pretty minor). We completely disagreed about an issue (both for good reasons). Thank God we hashed it out before the meeting, cause I would hate to have had that fight in front of the team, right? A united front is the most powerful weapon you can have in an IEP meeting. The district will say "Oh shit, both parents are on board?" or "How cool is it to see both parents on board... they must really care." So, Dads (or any other father figures) get off your ass and go. Defer all decisions to the mother, fine... say nothing, fine... You need to be involved.

***

I hope some of these tips might help. Before I was writing this I sent an email to my friends that attend IEPs on behalf of the schools with a straw poll, if you will, question. I asked if having a dad present was more intimidating, and are IEPs more conflict or collaboration...

I got 2 answers I didn't expect.

1. Yes Dad is more intimidating, but only because both parents are more intimidating.

2. I'd say 95% of IEPs are collaborative. Very few result in a fight or a conflict or vast disagreement.

But, I got an answer from one friend, a district special education coordinator, that I feel I need to share.

I spent a lot of time coaching you to listen to the district, convincing you they are on the child's side, be open to what they say, don't look for a fight... don't model your success or failure based on other's stories because they won't be applicable to your situation... etc.

My friend said "Jaye, I would say that 95% of IEPs are collaborative and very peaceful. But 100% are emotionally-charged"

Amen.

In my first IEP, and I consider myself pretty good at this, I had to excuse myself to use the bathroom. What I didn't tell anyone, even my wife, was I didn't have to pee... I wanted to go cry where nobody could see me. And as I write this now, a tear rolls down my face... not because I embarrassed myself, not because I didn't get what I wanted, not because things have been great or not great...

Because I never want to lose that passion for my son.

And I never will.

And that, my friends, is what I want all of you to take to your next IEP.

Monday, September 8, 2014

Stacy's Mom

When I sat down to write this post this morning it was going to be one of those "NT Parents say the dumbest things" type post. But it is not

I had a very tough morning with Jack yesterday. I was taking the kids to McDonalds and then to the park to give mom a little rest. The 4 year-old decided it was a good idea to get up at 345... and we were all feeling it. Julie had bargained with me a free afternoon of football if I took the kids off her hands for an hour or two... pretty good deal.

Except Jack wasn't having it. We made it to the drive-thru and got our breakfast, but then Jack was sent home to his room. Not listening, hitting his sister, using bad language, being surly in general. So, Jack was unceremoniously thrown into his room for the morning and I took Jade to the park (as promised).

The playground is crowded for a Sunday morning at 9, but there are several picnic benches open and Jade and I sit and have our breakfast. She brought 4 of her ponies, and they joined us for McMuffins and coffee. It was nice.

Jade asked if she could go to the playground since she was finished eating and I said sure.

I stayed at the picnic table and watched her run off. 

***

The tough part about going to the park with a kid for any parent is what to do with yourself. Do I want to go talk to the other moms? Nah, they seem to be in their own clique. Should I go join the Dads (there were a surprising number there)? Nah, they were all on their smart phones. Should I join the Helicopter parents on the playground? Nah. Jade was enjoying herself.

So, I resisted the urge to pull out my phone and instead just sat quietly with my coffee and watched...

And Thought.

***

Thought can be a dangerous playmate.

***

I watched as a little girl maybe 6 or 7 came up to Jade and asked if she could play with her. Jade (4) beamed and said sure and handed her one of the ponies, Pinkie Pie, which is her favorite. I smiled to myself and got up to go tell Jade things like "Tell her your name and ask her hers" "Make sure you share" "If she wants to play a different game, give it a try" etc. 

I stopped and sat back down because I heard "My name is Jade. What is your name?" "I'm Stacy" "This is Pinkie Pie" "I know who Pinkie Pie is" "She's my favorite" "My favorite is Rainbow Dash" "Let's pretend they are going to school" "Okay"

This interaction needed no supervision, or guidance, or involvement. 

And I watched my little girl organically interact with her peers. 

***

And I was sad. Sad because Jack does not have that ability. I wondered how he was doing at home. 

***

"10 minutes to go, Jade" I yelled out to her.

A lady stood next me and said Hello. I assume it was Stacy's mom as she was watching the girls play as well.

***

"How many more minutes, Dad"
"It's been 2, so what is 10 minus 2, Jade?"

Silence.

"4"

"No, Jade. Eight minutes left"

***

"How old is she?" asked Stacy's mom.
"She's 4"
"And she doesn't know 10-2? Is she in Pre-K yet?"
"She started last week"
"Really? Where? When Stacy was in Pre-K they were already doing multiplication"
"Good for her"
"Where does she go? She should be doing more academics than that. At blah-blah-blah academy they're already doing homework and writing"
"I don't care, ma'am"
"You don't care??? How can you not care about your daughter's future?"
"Ma'am... fuck off"

And Stacy's mom simply turned and left. She didn't gasp or sigh. She didn't give me the finger. She didn't even scoop up her child. She just walked away.

***

I wanted to tell her that she picked the wrong time to brag to me. I wanted to tell her that I was much more proud that Jade was playing and sharing and enjoying another child... which was much more important to me than multiplication tables. I wanted to tell her that my daughter is not stupid. I wanted to tell her that I was doing the best I could. I wanted to tell her that I came to this park to specifically spend time with my daughter since she gets so hosed for attention when Jack is around. I wanted to tell her that I love my daughter just as much as she loves hers.

But all that came to mind was "fuck off".

***

That was wrong of me. If I ever see her again, I'll apologize and say tell me more about blah-blah-blah academy. I'd love for Jade to play with Stacy again (she was a very sweet little girl). 

But, as is the case often, I was too busy worrying about Jack... and had little patience for her judgement. 

***

Parenting is tough work. When we are successful, we want to brag, and share, and pat ourselves on the back. When we struggle, we don't want to hear others that succeeded. We certainly don't want to be reminded of what we're doing wrong.

If Stacy's mom had simply said "look at her beautiful smile", we might have been friends. 

***

To all the parents that read this blog. I share a lot of our success stories here, I share a lot of our struggles as well. I never intend to imply that I am doing a better job than you (or worse). I share to inform, educate, entertain, and advocate about our journey.

As long as there is love, I will not judge yours.

Wednesday, September 3, 2014

Be True to your School

I'm going to try something brave today. I'm going to ignore all the founding principles and mission statements of my advocacy and say something dangerous. I'm going to piss off a lot of people.

I love my son's public school. They are exceeding my expectations.

For the past 30 years (or at least since I was old enough to hear about it), all the news and reports point out how much we (The United States) are falling behind every other country in the world in terms of primary public education. We rank 30th in math, 35th in language arts, 40th in science, etc (I made those ranks up for emphasis). The end of times is certainly near.

And No Child Left Behind is certainly to blame.

***

No Child Left Behind did something new in federal education reform... not the idea of standardized testing (we've always had those), not that new wacky math you see in the Common Core standards, and not the concept of higher funding for higher scores. The newness was right there in front of you. It's in the title of the bill.

NO CHILD LEFT BEHIND

For the first time in any federal education reform bill... ALL children were included. Schools could no longer transfer their poorest performers to Special Ed weeks before their standardized testing, schools could no longer expel their poorest performers, and schools could no longer ignore their drop-outs.

This became very important to my family.

***

Jack has a school psychologist that he adores. She's funny, hip, smart, and energetic. What's not to love? I have no idea how many students see her regularly (I'd guess about a dozen?). But I know which one she champions the most (at least from our perspective)... it's my boy.

And that's where I want to praise the system.

I spent 18 or so years in the public school system (including college and grad school). I was a good student... not the best, but good. I went to good schools. I was surrounded by good kids, smart kids, successful  kids. I was a geek, but a well-rounded geek.

From Kinder to 12th grade, however, I remember few teachers that actually championed me. A Kindergarten teacher that made me write stories during reading time, because I already knew how to read. A second grade teacher that let a friend and I present our "sketch comedy" to the class after lunch because we were way ahead of the lessons. A high school Biology teacher that let me make movies instead of essays because he had figured out that I was creative... but I sure as hell wasn't going to become a doctor. A high school English teacher that pushed for me to publish my work (before the days of epublishing, mind you).

But that's about it. I don't remember any bad teachers, either.

Oh, wait, I had a music teacher that hired me on the weekends to play weddings and parties with him. That was pretty cool for a 13 year-old to get $30.

So 5. 5 teachers I remember that championed me. 5 teachers that pushed for me outside of the classroom. 5 teachers that (if they are still alive) still ask after me today.

Jack is only in the 3rd grade... and he has more than 5 already.

***

Jack's current obsession is Minecraft... and he's not alone. Just about every boy in the third grade (and several of the girls) love Minecraft.

Last year at our annual IEP our school psychologist suggested we enroll Jack in the Minecraft class (part of the after school program) that they offered. 10 or so little "Miners" on a local network playing together.

She had to vouch for him. She had to convince the after school program that he would be okay without his aide there. She had champion him.

And she did.

***

Yesterday was the first day of Minecraft Academy.



Jack is wearing the hat.

I met the instructor and informed him of Jack. I told him everything he needed to know about what to do if Jack wasn't participating or misbehaving. I also told him that this was Jack's Superbowl and he had waited all Summer.

He was great.

What was even better is the bonuses we got from this class. Jack was finally in a social group where he wasn't the odd man out. He was truly in his element.

He belonged.


When his mom got home and asked him about the class he declared it as the "best day ever".

Imagine, Jack learning reading, writing, conceptual mathematics, team work, and conflict resolution in a classroom setting.

And thriving.

All because he had a champion.

***

It might be a little "pollyanna" of me to assume that this class will launch Jack into the upper echelons of academia, but, if nothing less, he's learning to type.

And Common Core testing is done on the computer this year.

***

For more information of Minecraft and special needs students check out "Autcraft" on Facebook. It is run by a good friend of mine and is a server designed specifically for children on the spectrum and their families. Stuart Duncan is doing very amazing and admirable work over there.

Thursday, August 21, 2014

Beyond

I had a drink with an old friend from High School recently. He asked me if I remembered Lily (a classmate). I had actually recently found Lily on one of these social media sites and had several updates.

Lily was one of the nicest and smartest girls we went to school with. She was kind and funny. She was cool and different. I remember she was into different kinds of music before being into different kinds of music was cool. I remember an essay she wrote that won the literary competition that blew my mind. I remember she was a volleyball player and lived and breathed it. I remembered she was one of us that went away to a good college.

And I remember she was smoking hot.

We reminisced for a bit about our friend. I gave my buddy an update about her life now: her husband, her kids, her job.

"Do you remember that weird swallowing thing she did? Do you think she had Tourette's?"

I had forgotten that.

***

I was home last weekend for a mini family reunion and my brother and one of his friends were talking to me. We had decided it was a good time to go get pizza for everyone. My brother and I wanted to take his friend to our childhood pizza parlor. Always the best pizza in the world in our minds. We didn't want to order ahead so we could split a pitcher of beer waiting for the order. A chance to sneak away for 30 minutes from all the kids and noise and excitement. And we would look like heroes upon our return because we had... Pizza!

"Let's take dad's mustang. We'll all fit." I exclaimed.

"Where are we going to put the wheelchair?"

I had forgotten about that.

***

I watched my son swim in the hotel pool. He was free, he was excited, he was stimulated. I watched the sheer exuberance as he dived over and over again to retrieve a toy from the bottom of the pool. I worried we had been out too long and his sunscreen would wear off. I gave him his countdown and he complied after five minutes. He dried himself off and came close so I could get that spot between his shoulders that he can't seem to reach.

And I gave him a hug... and he let me.

And it was nice. A perfect moment. I heard the traffic from a nearby freeway, not because it was too loud, but because the moment was suddenly so silent. I smiled.

Jack looked at me and said "I still need to take my medication".

I had forgotten about that.

***

If you can learn to forget, you'll learn to remember.

See beyond the disability.

Wednesday, July 30, 2014

The Dance

When I was 8 years old, I got some money from a few different relatives for Christmas. I had $48. My parents were nice enough to exchange that for a brand new, never before seen, exciting $50 bill. I had never owned one before. My brothers and sister and I were promised a trip to Fashion Fair Mall the day after Christmas, to buy what we wanted... with our own money. I put my money in an envelope, so I wouldn't lose it and headed to the record store. I wanted to buy Michael Jackson's "Thriller" on LP. It was to be the first piece of music I'd ever bought with my own money. I was ready.

***

I do not profess to be an expert on MineCraft, so please dismiss any factual errors in the MineCraft mythos that may follow.

Jack has been playing MineCraft (the mobile version) for the last 18 or so months. He started to grow out of Star Wars and back into MineCraft around the beginning of Summer. He's very good at it. He tries to include others in his worlds (I believe they are called "mods"). He fears the EnderDragon and won't even speak of the SlenderMan. I must say that I am impressed at his level of dedication to building his world.

A few days ago, Jack sat me down to show me all the crap he had acquired or crafted in the game. A bounty of hard work and dedication from the last 10 or so weeks. He seemed most proud of his diamond sword and armor. He lamented that he had not found lapis lazuli yet. I, dismissively, told him to keep looking.

I admired his hard work. I was proud that he had stuck with something, even when it proved to be difficult. I championed that he had not given up.

I pretended to care about finding lapis lazuli.

He was proud.

More importantly, he wanted my approval... a gigantic milestone in a child with a perspective processing disorder like autism.

He cared what I thought.

Let me write that again...

He cared what I thought.

***

It is often said that autistic children (and adults) lack empathy. It is also often misunderstood that they lack emotion. Most children (my son included) have a very healthy relationship with their emotions as they relate to themselves, but cannot see them in others. They don't disregard them (psychopath), they don't use them only to advance themselves (narcissist) they simply don't recognize another perspective in the first place. Remember, autism is Greek for "self-ness".

So, it is not unusual for a child to be sad, happy, nervous, and express it... but it might be difficult to recognize that in another.

Empathy - noun - The intellectual identification with or vicarious experiencing of the feelings, thoughts, or pathos of another.

Pathos - Suffering.

***

Somewhere in between the car and Sam Goody records, I dropped my envelope with my $50 bill. I looked for hours. I never found it. I got a new pair of gloves for Christmas. They were too big. The envelope must have slipped out of my hands because I wasn't used to the gloves yet. It was all their fault. I wished I had never got those gloves.

***

Jack came home from swim camp yesterday and was in a bit of a testy mood. He wanted to be alone and work on his MineCraft. Twenty minutes later I heard from his room the repeated cries of "no"!!!

I went to his room and Jack was under a blanket crying. Sobbing. Big fat ugly tears. Now, I've seen him cry a million times... because he wanted something, because he dropped something on his foot, because he didn't know how else to express himself... but there was something different.

Sadness.

Suffering.

"What happened?"

"It's all gone. I forgot to save my stuff in my chest and I fell in a hole and it's all gone! My diamond armor, even my diamond sword. It's all gone. I'm so stupid. I worked so hard to get it all. How could I forget? I hate myself."

He was fairly inconsolable, but I caught something in there... he was blaming himself! He was taking responsibility for his error... and was sad about it.

I asked him if there was a way to get it back and he said "no". I fought the urge to pick up to console and try to find a way to get his stuff back...

But nobody gave me my $50 back.

And then he said it...

"I wish I had never learned to play MineCraft"

***

Jack got a new aide for Summer School. He had to say good-bye to his old aide on the last day of school. I wrote about it on the Facebook page.

But, she was in his Summer School classroom with her new student. So he didn't really have to say "good-bye" until the last day of summer school.

When he came home that day, he was sad and quiet. He wouldn't tell me why.

Eventually he asked me

"Daddy, why did you make me meet Ms Melissa?"
"I don't understand"
"If I had never met her, I would have never had to say good-bye"

and I responded with the only thing I could muster up... a quote from a song by Garth Brooks.

"Well, then you would have had to miss the dance, Son"



***


Jack started re-building his MineCraft mod hours later.

Jack started dancing with Ms. Melanie (his new aide) instantly.

I, however, never wore those gloves again.

Who really has the problem recognizing the suffering in others???

Wednesday, July 16, 2014

Unexpected

I played football in High School. I was terrible. During the Spring practices one year, I split my hand open and left a scar that goes about 4 inches down each side of my left hand between my two middle fingers. I was out for the rest of the Spring.

The coaches didn't mind much, but the orchestra teacher was PISSED.

They had lost a seldom-used 3rd string Tight End, but Maestro had lost his all-state first chair viola.

***

We didn't know if Jack was a boy or a girl until the minute the doctor flipped him up, showed me the fruit cup, and stared blankly at me for a moment.

"It's a boy" I exclaimed.
Followed by "Right?"

***

So I found myself with a son. Cool. Someone to drink beer with. Someone to throw a baseball around with. Someone to drive me to the racetrack in my dotage. Someone to carry on the name. Someone I could understand.

I'll be forty this year. Since I moved away when I was 21, every year I make the trek back up to Fresno (yes, THAT Fresno) to take my dad to a Fresno State Bulldogs football game (or two). We show up early, cruise the tailgates looking for free beer or tri-tip, and talk Bulldog football. On a sidenote, we NEVER find that free beer or tri-tip. It always goes the same way, my dad will tell me he's well-connected and we'll bump into someone he knows and get to hang out... but we never do. 20 years of not knowing ANYONE!!! So, if anyone is reading from Fresno, we're coming to the Nebraska game this year. If you're having a tailgate, we'd love to drop by.

But what my dad doesn't know is how much I enjoy that time. Maybe he does know. We usually just walk around talking for an hour or so and then watch the game.

Sometimes, my brother will come with. Sometimes a random friend. But it's usually just the two of us.

And those are still the best Saturdays of my life.



***

In the fall of 2008, The University of Wisconsin played against the Bulldogs in their home opener. We were there. We witnessed the Bulldogs freshman kicker miss 3 field goals in a 13-10 loss. It was wonderful. And I said to my dad, hey, I can't wait to bring Jack next year. He was almost 2 at the time, but I saw a lot of three year-olds there... maybe next year. I couldn't wait to share my favorite experience with my dad with my son.

Maybe next year.

***

Jack was diagnosed next year.

Maybe next year.

***

2010-2013 were more of the same. First, Jack has absolutely NO interest in football. He has even less interest in crowds, noise, and fanaticism.

This year Fresno State opens its schedule against University of Southern California. Here in Los Angeles. We are getting our tickets together and I find myself saying the same thing about bringing Jack...

Maybe next year.

***

I don't think this is autism specific. I'm sure all parents are a little disappointed, or "let-down" when their child has no interest in participating in something that is so dear to you. I truly envisioned walking with Jack (when he turns 21, of course) at the tailgate parties trying to find free beer. Maybe even with his son.

Instead, I try to get into his world. Maybe we can make his own memories of time with his dad. I will be the first one to laugh his ass off when his son says "Dad, I don't want to play Minecraft with you and Grandpa." or "I don't want to have another Light Saber Battle".

And I'll be a little bit sad, too. I'll know how much Jack wants to spend time with his boy the way he did with his dad.

Autism didn't take this from me.

Life did.

But I'll get to keep what I love. On August 30th, my dad will come down to Los Angeles. We'll leave for the game an hour early or so because I'll tell my dad that I am well connected in Los Angeles... and we won't find any free beer.

My dad will ask the same question he already knows the answer to: "What about Jack?"

And I will smile my usual smile and give my usual answer: "Maybe next year"

***

Or will I?

Because, in the wise words of Master Yoda that Jack has made me repeat a thousand times...

"There is another"


Monday, July 7, 2014

Give a Little Bit



There's a good story going around the US right now about a little girl that was attacked by a dog and then refused service at a KFC (Kentucky Fried Chicken) restaurant in Jackson, MS. The story goes that she was asked to leave because her appearance was "disturbing" other customers (or something like that). KFC claimed no knowledge of the incident and couldn't even find any evidence that she ever entered the store through their own internal investigation. It was deemed a hoax (still pending, of course) and the story was mostly dropped and will soon be forgotten.

When the story was still hot, however, a donation page was established. The page was seeking donations for corrective surgeries and potential legal costs (among other things). That page raised 138 thousand dollars... including 25 thousand from KFC themselves. The page has since been disabled and final numbers are unattainable.

The public cried out "What terrible people", "how could a family use a little girl's disability or disfigurement to make money?" "What is wrong with this country?"

According to the story I watched on the "Today Show" the family had offered to refund any donations made to their cause.

***

Autism Speaks is a juggernaut among charities. They raise millions of dollars (MILLIONS) every year through their walks and other fundraising efforts.

Yet, about a year ago, in an attempt to secure autism funding through congress, founder Suzanne Wright wrote a scathing "speech" in which she painted the autism community as helpless, at the mercy of these "terribly disabled" children, and how "autism tears families apart."

The public outcry began again. "That's not my autism", "How could she hate children so much?" "They don't speak for my family" "That's not my experience".

Their financials were released a few months later... "They spend so much money on their board member's salaries" "They fund such stupid studies" "I've never received a penny from them... or any services" "Look at how much of my money they spend on their legal defense!"

And finally, "They don't have any autistic adults on their board."

An underground movement to boycott Autism Speaks began.

***

Yet, Autism Speaks is still receiving record donations.

Yet, few people (including KFC) actually did take their money back.

***

Charity.

- noun "something given to a person or persons in need; alms"
(alt) - noun "leniency in judging others; forbearance"

***

The four Cardinal Virtues from ancient Greek philosophy are prudence, justice, temperance, and courage. The three theological virtues from the letter of St. Paul of Tarsus (combined make up the commonly know "seven virtues") are faith, hope, and...

CHARITY

***

The concept (or virtue) of charity is not uniquely American. But no country exemplifies it more. To any foreign readers, did you know that the US actually has limitations and rules written into our tax code to regulate charitable donations? Whenever there is an international crisis, the average US donation (cash only, not including services) is 800 percent (8 times) that of the next leading country? Often to our "enemies". Did you know that the household average in the US for charitable donations is 5-10% of your annual income... regardless of that level. From buying a muffin at your school's bake sale, to building a hospital. Americans give. Corporations donate closer to 15%... and often run their own charities!

The cynics out there will say "well, the US can afford it" or "The wealthy only do it for a tax shelter" or "corporations only do it to funnel money back into their corporation" or "charities never give me anything, so why should I give to them"

The truth is that there are some illegal uses of charities. It does happen. It is also illegal and prosecuted (if necessary)... and extremely rare.

Some people (many) were "duped" into donating to help a little girl get a corrective surgery because KFC denied her service.

Some people (many) are outraged that Autism Speaks doesn't have any autistic adults on their board, pays their board too much, or doesn't speak for them.

Yet, the donations pour in.

Autism Speaks' mission statement is "At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders."

The donation page for the KFC story (not really an official Mission Statement) aimed to "raise money for corrective surgery and legal funds for a little girl."

And so, so many people did.

If you gave $5 to either cause, if you gave $25k to either cause, you did it for the right reason. You did it from your heart.

I remind you, once again, an alternative definition of charity:

leniency in judging others; forbearance.

***

The US has difficulty defining its culture, sometimes.

We are excessive.

What is "American Pizza"? more meat and more cheese.
What is an "American Car"? Bigger engine. Bigger body.
What is an "American grocery store"? More products. Bigger displays.

The United States did not invent the concept of charity. It's one of the seven virtues, for Christ's sake (pun intended). But, from many different cultures and countries, we brought it here, made it excessive, and made it our own.

Keep giving. Find a charity or cause with a mission statement you agree with. Give your Starbucks to the homeless guy outside. Volunteer at your school. Build a hospital.

Keep up the good work, America. It's your patriotic duty.

Wednesday, June 11, 2014

Father and Son


This year was our triennial IEP. In California (and most states) the triennial (every three years) IEP is used to establish eligibility for services for the next three years. They usually involve a "re-assessment" to determine future eligibility... remember when you first had your child enrolled and they did all those wacky and seemingly useless assessment tests? Well, those are all done again. Hopefully, you get a great benchmark of how far your child has come in three years...

Sometimes you get the opposite.

***

We received our triennial assessment report about a week before our scheduled IEP. It was very thorough. It was very well done. It was very accurate. The reports (from the school psych, teacher, speech, OT, and district BCBA) were all done by professionals that knew Jack. They were his teachers and therapists, not someone in a faraway office.

They were very accurate. Julie and I respected the content and findings almost 100% (with the exception of the OT report, because, admittedly, I don't understand what OTs do exactly. I've had it explained to me several times, "dumbed down" several times, explained again several times, and "dumbed down" even further, and I still don't really get it. But, that's not important to this story... only to my future development)

There was a great deal of improvement... across the board. There were things to work on, of course, but it was really nice to see, in black and white, the areas that were working. It was nice to see that the paths and "best courses of action" we had chosen were showing as bountiful. For a few minutes, I silently said "see, I told you so" to all those that wanted to choose a different path ( I say silently, because Julie and I have never received any major opposition to Jack's path. The one time we both completely disagreed with a service provider was a social skills group that clearly wasn't the right fit or philosophy for our boy. Julie saw this way before I did, and urged me to pull him from this camp, but I let them have a chance for a few extra weeks before we unceremoniously pulled him. So... Baby Love, here it is in writing, you were right).

***

What was missing from the report, however, were any compliments. I spent a Friday afternoon reading a 27 page clinical report on my son, that did not contain one compliment. Maybe that's not the place of these assessments. Maybe the reports are "meta-complimentary" meaning I was required to fill in the blanks... that the improvement is the compliment.

But I selfishly really wanted to read "Jack works really hard" or "Jack has a wonderful sense of humor" or "Jack's exuberance gives him unlimited confidence" or even "Jack has pretty eyes".

And that made me sad.

***

So, I want to take a second and put those "meta-compliments" in a more readable form.

Jack, you work harder than anyone I know.
Jack, you continuously climb obstacles that most of your peers would run and hide from.
Jack, you have a passion and zeal for life that I am jealous of.
Jack, I have never met a person that could command a room the way you do.
Jack, you are very endearing.
Jack, you never give up.
Jack, you were described as insular and lonely and frustrated at school, yet you still want to go EVERY morning.
Jack, the way you hug your mother has such an honesty and passion and meaning. It might very well be the manifestation of true love.
Jack, albeit colorful at times, you are very verbal.

Jack, you have taught me... Taught me patience, compassion, love, pride, serenity, sacrifice, and a whole bunch of shit about Star Wars.

Jack, you have beautiful eyes.

***

When Jack was days old, he had to be put on home phototherapy for a case of Jaundice. Julie and I wrapped our three day old son in lights and blankets and spent the next two days taking turns just watching him. My father came to visit and he took a shift or two.

We were scared.

I remember Julie asking my dad "How do you do it? How do you stop worrying? How do you parent?"

And my father said "You do everything you can to provide the very best opportunities and resources for your child. You have to believe in those choices. You have to be resigned that you have done the very best you can. And the rest is up to them."

Jack was three days old.

My father had no idea how true those words were.

Monday, May 5, 2014

The Princess Who Saved Herself


Jack started his Karate lessons this weekend. This is something he is doing with Julie. It's their time, and I won't intrude. But it went very well for the first lesson. They are both excited to return.

While Jack was with his mom, I stayed home with Jade (4). That means I played a lot of My Little Pony and Princess crap.

When Jack was younger and being assessed, the phrase "self-directed" was thrown around a lot. It was used as a euphemism for "poor listener" or "non-functional". On Saturday, however, I got a good look at what self-directed really means. When I am asked or tasked to play with dolls by Jade I, admittedly, don't really know how. I can do funny voices, I can make them dance or sing or bathe or picnic, but I really don't know what to do with them. Jack was never good at pretend play, if engaged at all. Jade, however, loves it. Alone or in a group. All of the ponies and princesses have their own stories. Their own struggles. Their own beings.

Luckily, Jade tells me how to play with the ponies and princesses. Quite sternly, might I add. "You're not doing it right" "She can't fly" "She doesn't live in the Crystal Empire" and the such.

So, this Saturday, it was the princesses.

Jade accidentally (perhaps purposefully) bit Rapunzell's hand, leaving it a little deformed with a bite mark embedded in the plastic. Jade desperately asked my to fix it. I tried, but the plastic was too molded and too hard to fix.



"Fix it Daddy, Fix it"
"I can't"
"No! Now she is ugly. The other princesses will laugh at her"
"No they won't. She is different and they'll like her for it"
"No! (Sob) Throw her away. Nobody will like her anymore"

And I instantly went to a place of advocacy. I disregarded that this was a TOY and saw a teachable moment.

"Jade, we don't throw away people because they are different. We celebrate them."
"No!"
"All of your movies are about somebody being different and fitting in. So, Rapunzell's hand is what will make her special.

Jade took a moment.

"Can we put a band-aid on it?"
"Yes. Then she can show it to the other princesses."
"Okay"

And we went to the bathroom to find a band-aid.

And I thought I should try to make the point again.

"Just because people are different, doesn't mean they are ugly. It doesn't mean we should throw them away. Like your Uncle. His legs don't work like yours, but we still love him (Uncle is in a wheelchair). It doesn't make him any less."

I had no idea if she cared about any of this. I fumbled for a band-aid. Dora was chosen over Mickey Mouse.

And Jade finally said:

"Like Jack?"

***

Emotions flooded me. How is it possible that my four year-old sees difference? How is it possible that my 4 year-old sees inclusion and disability that my peers can't often see? Oh, wait, Jack scratched his hand the other day, maybe she's talking about  his hand. That must be it.

***

The band-aid was adhered and Rapunzell was returned to Belle, Barbie, and Samantha (Hey, I'm guessing on the last one, the blue princess). And Rapunzell told her tale of heroism about the band-aid to a fascinated audience. I think there was a dragon involved. She was quickly accepted back into the fold and they left to go play in the castle in the kitchen.


***

I watched my 4 year-old spirit the dolls away.

How is it possible? How can a 4 year-old just have their shit together like that? When do we lose that innocence? When do we start to judge? When does that childlike exuberance that gives us unlimited confidence fade?

Not today.

"Yes, Baby. Like Jack" I said silently to myself.


Saturday, April 26, 2014

Home Sweet Home


My family and I went to the Walk for Autism Speaks 2014 event this morning at the historic Rose Bowl in Pasadena, California. We've gone the last 4 years. We've never had a team, but show our support for our community. I've even had the pleasure of meeting some of you there in years past.

This year was a little different. We brought Jack's in-home ABA therapist for his last session. We will miss her (as well as his other therapists... which I wrote about here). It was nice. We took advantage of the resource fair, said hello to some old friends, said good-bye to our therapist, and ate some crappy food from the vendors.


(Jack says good-bye to his last therapist)

***

For a few minutes, Jade and I split away from Jack, Julie, and Jennifer. I took her to the bounce house before it was too crowded.

Nearby, trying to stay out of the spotlight, was a woman with two boys. They were in a double stroller and were too large to still be in a stroller. I assume they were twins and were 8 or 9. They were both melting down. One crying and one thrashing.

Mom was obviously crying behind her over-sized sunglasses.

***

I spend so much time writing about our children fitting in and belonging among their peers. The resource fair at an Autism Speaks walk is a great place for our children to be who they are. Nobody looks twice at the child wearing nothing but a swimsuit, or the child talking to himself, or the eight children tracing the parking lot fence with their fingers.

It's home. It's safe. It's them.

For us, too.

***

I stand in-line for the bounce house and watch a grown woman cry. I take my sunglasses from my hat and put them on, because I don't want her to see me tearing up for her. Her boys are nowhere near the only children here having a "tough time". I feel empty and helpless for her. And I turn my head to not stare.

One by one, women walked by... other mothers, therapists, young girls perhaps on the spectrum themselves... None of them stop and stare.

The first, a woman in her 50s, places a soft hand on her shoulder and moves on. A young therapist gives the mom a hug. A child exchanges a smile with her.

Finally a man around my age walks by her. He places a hand on her shoulder and leans in close and says something to her. She gives a half-hearted smile and wipes a tear from behind those sunglasses. He touches her shoulder once again and walks away.

My mind races with all the things he could have said. He could have said something like "You're among friends", or "You're safe", or "We've all been there". And I smiled.

Jade finally got in to the bounce house. And the Mom calmed her boys enough to move on. As I watched her walk away I thought about my community. I thought about my peers, not my son's. I thought about how nice it was that so many people touched this Mom... with respect, not condescension. I was proud. I was proud of my community and my family. I thought of how often I read blogs about a kind word that was said, or a mean word that was said, or a dismissive glance given, or a disdainful scowl, or an empathetic smile.

And I realized the man that spoke to her was only a few feet away from me. He was watching his son in another bounce house.

"Excuse me. What did you say to that Mom?"
A wry smile emerged from his rugged face.
"You belong"

Fuck yeah you do.

Home Sweet Home.

Wednesday, April 23, 2014

Thank You



This morning I find myself overcome with a feeling of sadness, positivity, and nostalgia... all at once. 

Jack was diagnosed in November of 2009. In October of 2010, we started in home ABA behavior therapy. On Saturday, 3 1/2 years later, that therapy will end.

I want to write about two things in this blog today. First, what was the benefit of behavior therapy, and why we agree that it is time to move on to the next stage. Second, I want to thank the therapists that have been in our home, and part of our family, through the years.

My wife (Julie) has written before about how she felt we were "destined" to have Jack. You can read her words here. To paraphrase what she wrote so eloquently, there were lots of things in our lives that set us up to raise Jack. My father is a pediatric physiatrist. My sister is an OT, and her college room mate was an ABA therapist... So we were well prepped on what to expect from ABA therapy. I don't want to go into what ABA therapy entails here... it's a lot.

But I do want to tell all of you what we got out of it, and more importantly, why we are willing to let it go. Put simply (VERY simply) ABA therapy is directing instead of following. Stay in front of your kid, so you don't get behind him. "We're walking close to the grocery cart" rather than "Don't touch the peanut butter". To do it correctly takes a lot of time, a lot of patience, a lot of heartache, and a lot of "training"... TO THE PARENT/CAREGIVER.

Jack is by no means "cured" of his autism, or maladaptive behaviors, but Julie and I are as educated and trained as we can be to guide him through them. To understand them. To truly empathize with him. And, quite possibly, "correct" them.

Autism Spectrum Therapies gave us those tools. They aren't paying me to say that. I want to endorse this company (which is nationwide, btw). Their mission statement is clear. Their therapists are educated and fantastic. Their supervisors are glowing.

So thank you to AST for servicing us. It is because of your company that Julie and I truly feel we have the tools to move forward on our own.

Thank you.

***

One of the most wonderful (and humbling) things about raising a child with special needs is the people that will come in to your lives (and homes) for your children. It is amazing that there is someone out there that loves your child so much to make a difference.

I want to thank three. Actually, I want to thank four, but our current therapist is really Julie's (as they do sessions on the weekends now) and I'll leave that to her.

(ed. note - I am not using their real names, but the pseudonyms are loosely disguised as I want these ladies to read this)

Terry  - Terry came into our home as our first "full-time" therapist. You have to remember that I (the father) was home for most of the sessions. The father is the primary caregiver for ABA sessions around 8% of the time, so we were already a little unique. Terry taught me and Jack the ABCs of ABA. She was bright, had a wonderful disposition, encouraging, corrective when necessary, and thorough. Most importantly, she truly loved Jack. So many sessions were spent with Jack on her lap, showing her how "Handy Manny" wanted to set up his town (pretend play). Terry was soft and loving... which is exactly what we all needed at that point of therapy. We will never forget you. I remember there was a brief phase where Jack's reward was making "sound bites" on an application on the iPhone. He would record burps and farts and buzzer sounds. And one day he recorded this:

Terry: Jack.
Jack: What.
Terry: I love you.
Jack: I know.

And on the hardest days... I still play that sound bite today.

Thank you for loving my boy so much.

Karlie - Karlie came after Terry. She was brilliant, young, and enthusiastic. She found Jack fascinating and funny. She loved him. She came at a time where we were encouraged to "go out" in the community, and we did. We went to the grocery store and Target and the park. Karlie was the most interested in what made Jack "tick" of anyone. She was equally fascinated with him as he was with her. And she got promoted to supervisor deservedly because of this thirst for knowledge. Karlie also handled me well. When we had a break she would talk to me about the Dodgers. She was curious about Julie's job. She was just "going places".

Karlie, thank you for loving my boy so much.

Stacia - Stacia is the therapist we had for the longest period of time. She was the toughest and strictest. She had absolutely no problem telling ME I was wrong. She definitely taught ME the most of anyone. She was the best therapist I've ever met. We fought to get her. We fought to keep her. She was brilliant and never afraid to try new things.

Stacia was also with us at the toughest time. Stacia had to endure the "aggressive" year. Stacia got punched, kicked and bit right alongside me. Stacia stayed late to finish the "90 minute / 104 acts of aggression" meltdown with Julie... because she cared. We had her in some capacity for about 2 years. And despite her tough/rigid exterior, every once in a while, I would catch her saying simply "Jack, can I give you a hug?" because she was overwhelmed by Jack's charm.

What Stacia probably doesn't know (or at least adequately) is that she saved my life.

There were some tough times in that year. Stacia is the only therapist that has seen me cry. Stacia is the only therapist that has seen me throw my hands up in the air and say "fuck this"!

And she NEVER gave up on the boy.

And she NEVER gave up on me.

And I will NEVER forget that.

Stacia, thank you for loving my boy so much... But thank you for believing in him... and me... even more.

***

If you're new to this journey we call autism, I want you to take away from this article that you are going to meet some amazing people in your life. People that you would have never met had you not had a child with special needs.

People that will champion your children forever.

Let them.

Thank them.

Thank you, ladies. Julie, Jack and I love you.