Wednesday, February 11, 2015

The Endless River

Last night my five year-old daughter woke up around 330 and came in to our room. "I had a bad dream." She wanted to get in bed and snuggle with mom. Mom, as Jade has NEVER wanted to sleep with us... EVER, delightfully obliged. I could hear them whispering as I fell back asleep.

What was your dream about?
I was dreaming that I was talking to all of you and then everyone turned into stuffed animals.
All of us?
Everyone. It was very scary.

And I drifted off to my own dreams.

For me it was the same dream I've had since I was a kid. I had it several times. My dad had recently taken me to the mountains for an Indian Guides YMCA outing. We fished and told stories around a campfire. We probably made s'mores (but I don't remember for sure). And we stayed up later than I ever had before in my 6 year-old life. I remember climbing into the white Volvo with my dad and we drove about an hour home. You would think it was the fishing or the s'mores or the time with my dad I'd remember. But it was the drive home.

I had never driven in the mountains before. I vividly recall hugging a mountainside and trying to look as far down the other side of the road as I could see. But it was night... just blackness. I knew the bottom was down there somewhere, but tonight was just darkness... nothing. I was horrified at the unknown. I remember the sheer terror I felt as we rounded every bend and the headlights would shine briefly on the top of what hid certain death and uncertainty below. It was both terrifying and exhilarating. I marveled at the duplicity of the road. The headlights showing me what lay in front, but not what lay beneath.

Thirty Five years later I had the dream again. In my dream I was riding my red beachcruiser Schwinn. I remember it well. It was fat and clunky. Safe. It represented freedom. I could go wherever I wanted on my bike. It would never fail me. In my dream I was riding in, you guessed it, the mountains. It was certainly a bit of deus ex machina as to how a six year-old got to 4000 feet in the Sierra Nevadas.

I was free. I was literally above the world and held that childlike exuberance that gives us unlimited confidence That feeling I so, so long to re-capture now.

And then night falls.

I take a turn too fast and tumble over a railing.

And I fall.

As a child, I would usually wake up here. Gasping. Terrified.

But not always. Now, as an adult, with a better understanding of the silent lucidity of dreaming, I allow myself to fall. It's darkness, and I'm still falling. Certain to smash into something... soon!

Splash! It's a river. A river moving fast. I look to the left and right... nothing but rushing water. I frantically turn around and notice calmer water, with several reeds piercing the surface. I could probably grab on to them. As long as I don't give up swimming. The current carries me as I try my hardest to get there, continually knocked back into the eddy of my swirling river. I try again and again until... at long last... I grab a reed.

***

I think of the journey with my son. I think of all the mountains and rivers and chasms and unknowns we have, and will continue to face with his journey through autism. I get the metaphor.

But I think of my daughter. I think of her journey through epilepsy. I think of how ignorant I am and how little I can guide her. I oddly wish it were autism, because the devil I know is better than the devil I don't know. I'm reassured that 80% of kids with absence seizure childhood epilepsy "outgrow" it by adolescence... but that means that 20% don't.

This evening, we got the news that she was going to need to do further blood work tomorrow. Routine. Checking levels. But, have you ever taken a 5 year-old to get their blood drawn? I have. It's terrifying to them, and it takes longer than a quick shot in the arm.

But my baby girl is a champ. She said "okay, daddy. I'll do it again. But I want a new Equestria Girl doll for it."

So, tonight, I took her Target to get the Equestria Girl doll for tomorrow's reward. Apple Jack. On the way to the register, she eyed the Los Angeles Kings (excuse me, World Champion Los Angeles Kings) hockey caps. She said she wanted one. I said, "are you sure? I can get you a different hat, something with the equestria girls?"

"No, daddy. I want to be like you"

***

And I think to myself... "why?!?!"

I am scared baby girl. I am scared that I can only see the surface and terrified of the darkness below. We might fall. We might plunge into that darkness and find ourselves in the rushing water. Helpless. Flailing. Overwrought. Seizing.

We could take the easy way out, baby girl. We could wake ourselves up. We could return to the comfort of mama's bed. We could go back to that warm embrace of maternity. We could be safe.

Or we could swim.


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.