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???