Maddie on a field trip.

The main goal at my itsanautismthing.com site is to show the many sides of my girl Maddie. To help people understand that people on the autism spectrum are filled with all the same emotions that don’t have developmental disabilities. While I want to protect the love of my life at all costs, I don’t want to make it seem like being on the spectrum is just some cloud-free existence. This video is a little tougher, but if you reach far enough inside yourself, I think you will be moved. Plus it has a funny ending.

A little background on this video is that Maddie has a behavior sheet she brings home every day which discusses how her day went. On this day, Maddie had some bad marks on it, so I wanted to find out what was the problem. What I learned from this video is that I sometimes forget that despite her being 10 years old, she developmentally can often be more like a 4 year-old. If you look at the video with that in mind, it doesn’t seem that atypical. 

Halloween Doctor

Maddie is off today for a field trip. She breaks that down and as you can quickly tell, she’s excited to be going.

Maddie loves rollercoasters. She actually loves all amusement park rides as it gives her the sensory rush she craves. I like rollercoasters, too, which works out well. She just likes them even more than me.

Maddie with her baby sister Mallory.

Maddie stands in the front yard to give a flavor of Fall. She discusses her trip to Williamsburg while waiting for the bus.

Maddie at 2.

A pretty consistent element that impacts people on the spectrum are sensory issues. The lights and sound of a store can be overwhelming. Maddie loves to go shopping, but things can turn at any moment, so you have always be able to improvise.

One of Maddie’s all-time favorite people is her school bus aide, Lynn. She is awesome with Maddie and has been having drive home conversations with her for a year now. Earlier this year, we surprised Maddie by going to Lynn’s other place of employment, JC Penney. Maddie had been discussing with us that she wants to work at Penneys someday. We guessed this had mostly to do with her wanting to be by her friend, Lynn.

When we got there, Maddie was stemming like crazy, as her body seemed like it was ready to burst at the seams. When we got to the makeup counter, we had to be slow about having her see Lynn, as the excitement was initially too much for her to take.

After Lynn did a makeover of Maddie’s sister, Mallory, it seemed time. Unlike Mallory, Maddie has little interest in makeup, but Lynn was able to apply some lip gloss to her lower lip. As you have read here, any event like this takes major planning, as it can all go wrong quickly. This one went well, as we got out of there soon after.

It’s not like going to Disneyworld, but Busch Gardens is about the 2nd place my girl would want to go to.

Madeline goes on Spring Break on Wednesday. Daddy doesn’t get vacation pay so I booked myself in Williamsburg at the comedy club there so we could make a family vacation out of it. Big reveal in this episode for Maddie, which she responds with excitement about.

Maddie goes over to her neighbors house to hold a baby for the first time. She is joined by Sam, Mallory, and baby Grace’s big brother, Nathan.

Big Event this Saturday in Bloomington, IN. Doors open at 4pm!

Great event tomorrow in Bloomington to benefit the Special Olympics of Monroe County. I will be doing my It’s An Autism Thing show, plus my great friend Mat Alano-Martin will be opening up the festivities. Taking place at the Comedy Attic in Bloomington, the show starts at 5pm. Click on the event brite link to buy tickets or buy tickets at the door tomorrow.

Bonus Note: Doors open at 4pm so people can bid on the great silent auction items. (100% of these auction proceeds go to Special Olympics.) These include a Colts football autographed by Pat McAfee, some great stuff donated from Scotty’s Brewhouse, and lots of goodies from the IU basketball dept, which include autographed bball’s by Tom Crean.

Now here is Maddie giving her pitch on why you should attend.

Maddie and Mallory 2010.

Maddie doesn’t like to watch tv shows or movies, but she does love a few music videos that she watches on our iPad. This one is her favorite. Try not to be in a good mood after watching this video.

Maddie and Mallory in 2010.

It’s always there. It lurks just below the surface. The world is not designed for your child, so you are always looking around the corner to see what the next danger might be that you need to help them avoid. I guess you could say we (parents of kids with disabilities) are like the secret service, always on the lookout for a potential harm to the person you are there to protect.

Is it exhausting? Fuck yeah it is. The deal is that you continue to push on through as there is no else who will do the job if you don’t.

There is a perception that people on the autism spectrum are robotic in their ways of life. That their life is a routine of a few rituals that they have in constant rotation. On some levels that is true, as it makes a world not designed for them easier to navigate. Maddie always brings a backpack with her which is usually loaded up with books and a basketball. This bag always gives her something to do when she gets to her next destination. Even more so, it’s her security blanket. A security blanket that just happens to feel good to her, as it straps tightly around her shoulders and works like a weighted vest.

As routine oriented as Maddie can be, she is also extremely unpredictable. She can have a meltdown at seemingly any moment and just bolt out into traffic. We live at the end of a cul-de-sac, which is the best situation I can imagine for her. I can’t fathom how stressful it must be for a parent of a child with similar disability to Maddie’s who lives in a busy metropolitan area.

As she gets older it has become a little easier because Maddie seems to have a better understanding of her surroundings. I can recall when she first started talking in sentences (6-8 years old), she would ask what would happen if she jumped in front of a car. We would repeat what she had heard many times that she would get hurt really badly and that we love her very much, so we never want that to happen. Often Maddie’s response would be her laughingly asking would she have to go the hospital? Her response was the last thing we wanted to hear in regards to this subject, but you would have to try to stay calm, even though your voice sounded exasperated when telling her for the umpteenth time that she getting hurt is not funny. It was one of those situations where you try to be as honest as you can, but you end up not sure that you aren’t just inspiring her to do what you fear her doing the most, as she doesn’t truly understand the consequences of her potential actions.

Now comes to the worst fear we parents have. What happens to our child when we pass away? Even if there is a sibling or other relative to look after their best interests, it’s not the same. In most cases, the parent will give the best care because of a little thing called unconditional love. Most of us parents have this disease and no matter how frustrated you might be in the moment, thankfully unconditional love is always lurking in the background.

Susan and I have recently set up a trust to help take care of the costs for Maddie. Plug time. The person we used to set up our trust is Gordon Homes. Gordon is a great guy who has a son on the spectrum. He is extremely knowledgeable in the specifics for a trust for people with special needs and is also very supportive of autism charities. Click on this link if you want more info from him.

I’m guessing Susan will be at least 100 before she kicks open the casket door, considering how she never stops moving and her fitness  is on the level of a yoga instructor. I used to think if I can make it to 75 that seemed good enough. I didn’t see the great motivation in living past that. Maddie has changed my mind on this subject, as I have to stick it out as long as possible. Even when my girl is in her 50’s, Maddie’s going to need a jackass like me to keep her laughing. Even if it’s a guy in his 80’s taking out his teeth to make it happen.

Maddie loves to be silly.

As much as I love sharing the Happy Monday videos, I have never wanted to sugarcoat the struggles that we have with Maddie.

As much as she loves school, she has gone through some rough stretches every year with outbursts. They usually manifest themselves because of things she doesn’t like doing causing her poor decisions. For example, currently she has been frustrated about going down to the music class because they are working on Veterans Day songs, which she doesn’t like singing. Now let me state that this has nothing against Veterans, she is not the Hanoi Jane of her grade school, she doesn’t like the tunes. She has no desire to burn her training bra, she just would rather sing It’s a Beautiful Day versus Thank You Soldiers. 

Overall, though, she has had a good year, with smiley faces ruling her behavioral chart. Yesterday things changed. It started off badly with a fire drill, which I’m guessing is as painful to her ears as the songs of Gloria Estefan are to mine. She had been up later the night before because of her Special Olympics swimming, so she was tired, as well. There were other factors too, but she still knows it’s unacceptable for her to behave this way, as you can tell from her video interrogation below.

Maddie with our great family friend, Leslie.

I want to step out a little more and let you see how Maddie interacts with the world. I thought I would begin by showing her the happiest place in the world for her, Special Olympics swimming. She loves the water and when it’s combined with a friend like Kate, it is the most fun thing she will do all week.