30 Lessons Learned

I thought I would take a moment and share with you some of the important lessons I have learned raising an autistic child. You may want to tuck these away in the ole memory banks so that you can call on them when need be. Here are 30 in no particular order…

Spring Breakdown

Monday starts Spring Break for the kids. I can’t really relate because I never felt this way in my life about school… but both of my school aged children are bummed about it. So are the wife and I.

Sofie just LOVES school. A few weeks back she was complaining that her tummy hurt. She was all bundled up and ready to go catch the bus when she stopped dead in her tracks and held her stomach. “Can you kiss my tummy daddy? It doesn’t feel so good.” I leaned over gave her a kiss on the stomach and not two seconds later she vomited all over the place. When we had to call her off of school she cried and cried. “I don’t want to miss school! I will miss out on all the fun!” she bawled as gigantic tears streaked down her face. She is in kindergarten though, so I will revisit this feeling she has towards school in a few years.

Bianca on the other hand… she gets bummed in a different way. Her sleep pattern gets disturbed, she becomes irritable and starts to act out. Head banging increases, meltdowns increase and then it takes several weeks to get settled back into her routine once school is back in session. So one week off, sets her back about a month.

Fireflies - Blogging Advent Calendar Day 19

For Day 19 of the Blogging Advent Calendar I wanted to share this with you…

There is a lot of ugliness going around in regard to autism since the Newtown, CT shooting. I think we could all use this and the message it carries.

I hope you enjoy "Fireflies" by the Jubilee Project.

Hospital-ity - Blogging Advent Calendar Day 18

There is nothing fun about having to take a kid to the ER. Add autism to the mix and that makes it all that much less funner.

We had to take Bianca to the ER… again. Last time it was a broken foot, this time it was a REALLY infected finger. I just hate it. Nothing makes me feel worse than having to hold Bianca down while she is freaking out as doctors and nurses do stuff to her.

Yuck. It was bigger by the time we got to the ER.

Kudos to the ER staff who fast-tracked Bianca because they were sensitive to her autism and didn’t want her to be in a place that she was not comfortable.

It goes against everything in my makeup. I spend the vast majority of my time with Bianca working towards avoiding meltdowns. There is no option in the ER though. She is going to meltdown. She is going to get upset. She is going to hate me. I just hope that she forgives me.

Autism Beatnik - 2012 Blogging Advent Calendar Day 10

Let me set the mood if I may... I would like to take you to the Beat Generation of the 50's and 60's. We are in a dimly lit cafe and I am stepping up to the mic weighing 80 lbs less and with my goatee still completely black.

I strain to look at my note-cards through my dark glasses, bongos between my legs and a steaming hot cup of coffee (in this fantasy I like coffee) next to me. We are in San Francisco and the vibe is right.

I play a riff on my bongos as you, the audience, start snapping your fingers... Jack Kerouac eat your heart out...

It Comes in Waves - 2012 Blogging Advent Calendar Day 9

We work so hard. We see so many improvements in some areas, while others seem to be in a holding pattern. Then there are the times we worry that she is regressing.

Bianca goes through cycles. We notice that she will have a flood of breakthroughs for a period of 3-4 months and then it is followed by some kind of regression. It is almost like a wave crashing onto the shore. The wave advances and beats down on the sand that is in its way and then retreats. But as the wave returns to the ocean it carries some of the sand with it and slowly over time erodes the beach.

Potty Mouth - 2012 Blogging Advent Calendar Day 7

I wonder how many great inventions, plays, songs and ideas have come to people while on the toilet.

It has to be pretty staggering right? I think we get inspired because if all is going well, we usually don’t have much going on. We are in there killing time. Waiting for something to happen and staring at the walls. So the mind wanders. Maybe you fantasize about being wealthy, or hitting the big shot in a game. If you are a parent to a crazy house full of three kids… maybe you just lock the door and hope for a little bit of peace and serenity.

For the most part, we look forward to going to the bathroom. Bianca is starting to get to that point. Potty training is starting to come around. A lot of my friends that have kids on the spectrum have told me that 7 is the magic age for a lot of them. I dunno about that. Time will tell. But my wife and I can’t wait for the day that Bianca is fully potty trained and “Code Brown” or “Poo-caso” are no longer terms being used in our house. We believe that day will come at some point.

The Chair Necessities - 2012 Blogging Advent Calendar Day 6

It seems that I am always in some sort of war with our health insurance company. As always, I will not name which insurance company we have, I will just refer to it as Azure Cross Azure Shield or ACAS for short.

So as I have referred to many times in my posts, Bianca is an eloper. It has gotten better, but when the mood strikes… FORGET ABOUT IT. That kid is gone. Vapor. “Asses and Elbows” as we used to say back in the day. With age comes height and with height comes longer legs and with those longer legs comes a larger stride. Now you wouldn't guess it by looking at me or my wife, but we aren't really runners. So now at the age of 7, catching Bianca is requiring the understanding of pursuit angles like an NFL Safety.

Cardboard Box Time Machine - 2012 Blogging Advent Calendar

Looking through my garage, I found several large cardboard boxes. I thought I might put them to good use by making something creative out of them. Back when I was a kid a cardboard box was whatever the imagination could conjure.

 

If I could make a cardboard box into one thing, I think that I would create a time machine. Sure it would be tempting to go back in time and play the winning numbers of that obscenely large Powerball jackpot. I could warn Abraham Lincoln to skip the theater. I could even go back and not select Jamaal Charles with my first round pick of the 2011 fantasy draft.

But if I could go back in time to any point I wanted. I think I would go back to when we first suspected that Bianca was autistic and settle myself down.

Windows to the Soul - 2012 Blogging Advent Calendar Day 3

Before Bianca regressed, her eye contact was nothing short of incredible. She has the biggest eyes and she would look at me with such intent and curiosity that I knew she was absorbing everything coming her way. Just locking eyes with her from across the room would make her light up like a Christmas tree.

At some point in her regression, like most autistic children that particular characteristic went away. In fact, she started going out of her way to avoid it. At first I tried to make her look me in the eyes. After some research, I quickly learned that was probably not the best course of action. I would just let her do what she felt comfortable doing. If she felt like looking me in the eyes… so be it.

You do miss it though. What is it about that particular part of our anatomy that conveys so much? She would often come close. She would watch my mouth a lot; stare at my nose… but the eyes? Very rarely.

A Break in the Routine: Part II

Did I mention that I am NOT a morning person?

The appointment with the orthopedic pediatrician was at 7AM. I fought through the fog of sleep and got up. Thank goodness I set 5 alarms on my phone… I needed all 5 of them. Bianca needed several more. She was NOT moving. I got her dressed and carried her downstairs and out the door to the man-van. I strapped her into the car seat as her sleep remained undeterred.

We got to the specialists office and of course I had to fill out paperwork. Bianca was awake now, so I had to keep one hand on her and try to fill out the forms with the other hand while being tugged in every which direction. I felt bad handing it in because it looked like a serial killer had just filled out a form, but then I remember that they read “doctor” so I figured it was OK.

The staff was incredibly pleasant. Everybody was very concerned about Bianca and they were very in touch with the fact that she is autistic. They fawned over her, complimented how pretty she was and marveled at bond between us. It really made me relax. I was already nervous about the appointment and on edge because I had no idea what was wrong with Bianca.

A Break in the Routine: Part I

Since we could not really afford a big family vacation, I decided that I would use my remaining vacation time to take off a bunch of Friday and Saturday nights. I work a 4 day work week, so this would reduce my work week down to 2 days and allow me to enjoy some time off with the family. You may not be aware, but Tuesdays, Wednesdays and Thursdays (my normal nights off) are not exactly HOPPING. So, we scheduled a bunch of outings that we normally would not do and treated my time off as a bit of a “stay-cation”.

For the first time in our 13 years together, we actually went to a bunch of adult Halloween Parties that our friends hosted. It was a nice break in the routine for a couple that works opposite schedules to reduce babysitting time and costs and share a bed with a 2 year old that refuses to sleep in his own room anymore.

Simple Words (Guest Blog)

The other night as I was laying in bed my R2D2 message indicator went off telling me I had an email... yes I am that big of a nerd. When I checked the email I found a message from a fellow autism dad, board member and friend who was clearly hurt and angry. His son was upset, his wife was upset and being the caliber of man that Dan is... he was upset as well.

He needed to vent. So as I had done long ago he turned to writing. He let it all out and worked through anger. Then he did the most important part... he shared it.

The Mall




Outside of torturing our kids by making them see Santa every year, the mall has been a place our family has avoided over the past couple of years. Once our son was added to the mix, it became impossible for one parent to control all three kids and just not worth the tension it would cause between my wife and I if we all attempted to go.

We tried visiting the mall using several different configurations: Luis and Bianca in a dual stroller and Sofie walking, umbrella stroller/dual stroller combo, dual stroller/backpack with a leash, two umbrella strollers, renting one of those car strollers from the mall information booth… you name it. No matter the combo, it was always a nightmare.

Summertime Blues

For 12 years of my life, there was nothing I looked forward to more than the last day of school and the start of summer vacation. I hated school. Probably more than the average kid. I liked seeing my friends enough, but the structure of school and the homework was just not my style. For some reason those three months of summer vacation seemed like an eternity. There were so many adventures to go on and so much to do with friends. Summer meant sleeping in, baseball, riding ATVs and family outings. My friends and I lived it up each summer as we would regularly go to one of my best friends’ cabin on a lake and go boating and tubing. There were summer romances and festivals to go to… all in all, summers were a care-free easy going time.

Now I have a six year old with autism spectrum disorder and summers mean something completely different. They mean breaking old routines and fighting to establish new ones. Searching desperately for summer programs and making sure that we build upon the advances she has made in school with one on one interaction. We are always fearful that Bianca will regress. Summer programs aren't cheap and when your budget is already pretty tight as it is, you want to make certain you are paying for something that is going to be a benefit.

Club Med-ication

To medicate… or not to medicate?

This is the question I have been struggling with for the better part of two years.

The Conversation: Part 1

(Just a quick note… the conversation is paraphrased and not verbatim.)

It had to happen someday. I was hoping that it would be much later on, but I suppose we were just postponing the inevitable. We have to do this all over in a few years anyway, so I guess we might as well get on with it and hope for the best.

I have thought about it many times. I have had the conversation in my head more times than I can count. I planned well in advance because I knew at some point in her young life, Sofie was going to have to understand why Bianca is the way she is, she was going to have questions and it was only a matter of time before they came up and we had to explain autism.

One in a MILLION!

1 in 88? Nope. 1 in a MILLION!

… and here I am again… staring at the ceiling. It could be that I am still excited from meeting John Elder Robison earlier tonight. Maybe I am still geeked up from beating my boss in our NBA 2K12 league? I don’t think that is it though.

 Here we are a couple of days out from Autism Awareness Month, a few days away from Autism Awareness Day and the CDC has rocked me. Why? I don’t know. Does it really come as any surprise at all to anybody with a child on the spectrum and in the autism community that the diagnosis rate is higher than previously thought? Not I.

M&M’s (Miraculous and Motivating)

With motivation, people can accomplish amazing things. They can lose weight, run a marathon, learn new skills, climb mountains or throw themselves out of planes. Most people find motivation on their own and without the help of others, sometimes they need a gentle push. People get inspired and use that to their advantage to do things that they might not otherwise attempt to do.

For kids on the spectrum, motivators are often found by the parents. They vary as greatly as the individuals on the spectrum themselves. Some have a favorite toy, others a reward system like stickers. Some get rewarded with food like McDonald’s fries or a favorite fruit.

The Tragic Case of Stephon Watts

Of the posts I have written, this has been the toughest. I purposefully delayed publishing my thoughts on this subject publicly because it was very difficult for me to write about this story without becoming incredibly angry. My anger is primarily focused on two things. I hoped that with time the anger would subside and I could write without my judgment and opinion being clouded. I do not know that I have been entirely successful, but here it is… the tragic case of Stephon Watts.

Photo from JUSTICE FOR STEPHON WATTS!!! Facebook page.