Scott’s newest standup cd

This Saturday is the big fundraiser standup event in Fishers, IN. Click on this link to reserve tickets. See the poster at the bottom of the page.

If you can’t make it, but want to help raise money for these 2 great charities who do so much for people with developmental disabilities, click here and I will donate the profits this week to all sales of my Good Dad, Not a Great Dad cd.  Under the Gun entertainment site gave it their highest grade of an A, saying “it was the most memorable cd of 2013.

I promise you that you cannot not support any better organizations than these.

With her former Easter Seals camp counselor Billy Coon.

Just like the teachers/counselors who bring the best out of typically developing kids, the best people who work with kids with developmental disabilities are the one’s who bring a mix of humor, energy, and passion for their students, but are still able to be tough on them when needed. Today we meet a former summer camp counselor of Maddie’s who fits all of these characteristics.

Today’s post is dedicated to all the great people who are out there helping people with disabilities. As someone who is a parent of a child on the autism spectrum, I know that gig can be a bitch some days. Just know that unlike most, you are making a difference in what you do for families all across the world.

Maddie at 7, the last year she could comfortably fit into her jeep.

It’s autism awareness month and I want to show a few more sides of Maddie. Today is a a more emotional side of Maddie than I usually film.

The world is not designed well for most on the autism spectrum. One of these examples is how Maddie is a 10 year old in chronological age, but is developmentally more like a 4 year old.  Here is a video with how difficult this is for Maddie to handle.

With Maddie’s teacher from K to 2nd Grade, Ms Shepperd.

On her way to Grammy’s house, Maddie stops at a family friend’s house which makes her happy.

Maddie swinging with Grandpa at 4. At this age this was the only way she could stay on without someone holding her.

I am still out on a standup comedy road trip so I wasn’t able to do a Happy Monday video with Maddie this week. I thought instead I would offer up this video I did with Maddie about autism. I was asked to make it to be shown in a 4th Grade classroom. I didn’t have a lot of time to do it, so you will notice I’m talking a bit off the top of my head, as I did a 1 take Scott. Hey, maybe my measured tone will land me the successor to Fred Rogers gig.

We will be back next week and Happy Monday!

On this St. Patrick’s Day holiday, Maddie demonstrates some of the constant anxiety she’s been going through. It’s really manifested itself in negative ways lately, which have been tough for our whole family (and her school family, as well.)

I’m not going to get into all the details, since as you will see in the video, Maddie doesn’t want me to share them, but I do want to make sure that the fans of the site understand that Maddie is not just the girl you see in the videos. Her autism impacts her behavior and sometimes it’s not pretty.

Maddie had a tough week at school, as her behavior caused some red flags all week. The crescendo was Sunday on a car drive with Susan and her siblings. Maddie’s temper flared to an very out-of-control place and made for a really stressful and chaotic 25 minute trip back home from her grandparents house.

Parents of kids on the spectrum have many moments like this and it leaves you emotionally exhausted. As much as you feel badly for Maddie, you feel even worse for your other children who are scared of what is happening. It’s nearly impossible for siblings of kids on the spectrum not to develop scars from these episodes. All you can do is try to handle it the best you can in the moment and then talk to them later about the incident.

We love Maddie and we are thrilled that so many of you have joined us in your love for her, too. My ultimate goal with this site is to raise understanding and awareness. To do this, I want to show all sides of Maddie Long. Just like all people, she has her good and bad moments. How autism impacts these moments is that it escalates the level of good or bad.  The good news is that it seems like Maddie is off to Happy Monday. Her Irish eyes were smiling as she stepped on the bus…

In the Triumphant Locker Room

I’m sure you’ve seen some of the inspirational videos of kids on the autism spectrum making shots in high school basketball games. They are great examples of how we can all can feel connected to each other. I admit I cry tears of joy every time I see one.

If you have been moved by them, as awesome as these are, let me mention that there’s a great chance you will get a number of these moments if you attend a Special Olympics event. I have explained to the people who’ve never been that you will never feel so many emotions all going through you, as when you attend a Special Olympics game or meet.

Here are a couple secrets about the Special Olympics I’d like to share.

• Most of the athletes aren’t that concerned if they have a big crowd or not. They just love getting a chance to be part of the whole experience. In the sports world that we live in, this is the one place where the athletes aren’t looking for money or fame, just an opportunity. 
• We, as parents of these Special Olympic athletes, don’t see our kids getting to compete and have success anywhere close to what the parent of a typical child does. That is why the Special Olympics is so fulfilling to us.

If you have never been to a Special Olympics event, put it at the top of your bucket list. It’s easy to make happen and I’m pretty sure you will leave changed for the better. Do it for yourself. Watch this Happy Monday with Maddie video below for a great example of what I’m talking about.

Maddie has been playing dress-up for a long-time.

As we begin March Madness I show one thing Maddie does in the house. She likes to pretend she is out for recess and she is a method actor, as she totally dresses up to get in character. This is a Larry Bird/Kurtis Blow/Maddie Mashup.

Here is a glimpse of Maddie at school from a couple of weeks ago. Maddie loves school, but her focus in life is very short. This video gives you a good example of it.

NOTE: I’m guessing there must be some politically correct reason for Valentine’s Day to be called Friendship Day at her school. I will get Bill O’Reilly on it.

Maddie loves to pretend she has a job. The number 1 place she wants to work is Penney’s–because it’s where her bus aide works, Lynn. It could be argued the most important person in her life is the bus aide, since she spends so much time with them on her way home.

Maddie has had a number of these aides and for the most part they’ve been great. Lynn is at the top of this list, as she has built a really strong bond with Maddie over the past year.

School systems have a lot to consider and I’m pretty understanding of this, but the thing that I’ve been most frustrated about is the how many different bus aides and drivers she has had over the past 5 years. The special needs kids love the bus more than any others, but they need a good environment to feel this way. It’s amazing to me how many times the school system has hired people for Maddie’s bus who had a sour disposition. I’m not a new-age type person, but you need to bring a positive energy when you work with kids with developmental disabilities.

I dedicate today’s video to all the great bus drivers and aides who work with kids like Maddie.

8 year old Maddie with Brittany.

When the twins were born it became way too much for 1 person to handle. (It was actually way too much for 2 or 3 people to handle–for more on that go back to early stories I’ve written about it at this site.) So when I left town each week for my standup comedy shows, we hired a helper for Maddie who shadowed her for 6 to 8 hours on both of those days. You can’t just hire the junior high girl down the street to take care of someone like Maddie, they need to have some experience/knowledge working with a person with a developmental disability.

Over a 4 year period we had some great young women (and a couple not so great) who helped us with Maddie and became like another member of our families. We can never thank them enough, as it was a high-stress gig, in a high-stress area–the Warzone we called home at the time. Today we meet one of these people, a dynamic young woman named Brittany. She’s 1 of a kind and the planet is better for having her on it, even if she is vegan:)