Unlike anyone else I know, I live in a world of very conflicting points of view.

The comedian side of me knows how hard it is to make an audience laugh. If you want to kill the humor, try to make comedians behave like politicians–going over every word they say to the point where nothing ever feels off-the-cuff. My standup idols were always the most shocking, in your face comics. People like George Carlin, Richard Pryor, Bill Hicks, and Sam Kinison.

The father of a child with special needs side of me, on the other hand,  knows how hurtful words can be. Yeah, I know that some of you think they are just words and people need to get past them, but it just doesn’t work that way for many of us.

So what is a person like me, who lives in both these worlds supposed to do? It took me awhile but here is where I came down on the subject.

My style is not to tell someone not to say something I might not like. Go ahead, I’m not the comedy police. What I am going to do is to be as in your face and be just as irreverent as I have always been, but sell my viewpoints while I’m doing it. Most people in the special needs community have to be careful about how they go pushing their agenda, as they could lose their jobs in the politically correct world they work in. I’m a comedian. You know, the last place, supposedly, where true freedom of speech generally lives. It’s a bit of a tightrope, but I want to bring both of these worlds together in all the creative endeavors I attempt.

Ok, enough with the context, let’s get into why I offered all this up today. It saddens me how many phrases are out there that are demeaning to people with special needs. The newest one I’ve heard over the past year is Photo Wrecker. The idea behind this gem is that a person with some type of disability would ruin your family photo. Hilarious, right?

To me this is people at their most superficial. Let’s make a joke at the one group that can’t defend itself.  I started doing the Happy Monday videos with Maddie so people who have little to no contact with someone like my daughter could feel some of the charm that emanates from her. I wanted people to realized that sure she does carry herself differently than most, but that doesn’t mean she doesn’t experience all the same emotions that you do. It’s not an easy life for her, but on a few levels she surpasses most of us typically developed people.

What inspired me to write this piece today was something I read in USA Today. In the article by Liz Scabo, this was the part that most blew me away.

Nearly 99 percent of people with Down syndrome say they’re happy with their lives, and 96 percent they like how they look, the survey found. Just think about that.

In that same survey, 88 percent of siblings say their brother or sister has made them better people.

 

I’m guessing that my readers here are not at that same level of satisfaction with their lives and their personal appearance. I know I don’t feel close to that level.  It does my heart a lot of good to read the stats about how siblings feel. I can share that Madeline has made me a better person–by a 100 percent. (This wasn’t totally difficult considering I’m your typical narcissistic, but insecure standup comedian. Most of us people who do this biz start pretty low on the good person scale. Hey, but self-hatred is the ingredient that makes us fun at parties!)

While the stats of this study are great to read, I’m not going to pretend for a minute that life with a child with special needs isn’t incredibly difficult, also. It’s such a huge rollercoaster of a life.  Just read here for a refresher. 

So here I sit as a comedian.  I will defend your right to say what you want on-stage, as much as I might not like it. I hope you will defend my right to say what I want on-stage as well, like how I see it is as lazy and weak to make fun of people with developmental disabilities. I hope you will defend my right to tell you to your face that don’t you feel like a big-adult making fun of people who can’t defend themselves? I hope you will defend my right to tell you I lose respect for you every time I hear these type of words come out of your mouth.

I think the word standup means more than just being upright, it means to standup to people in society that need taken down a notch. By this I mean the celebrities and politicians who don’t deserve the money and power they inhabit.  I guess I don’t believe making  jokes about people that can’t defend themselves fits that same criteria, but if you are someone who is unable to work a little harder to find a more challenging topic, go ahead and hit the easy target. You know, the target that isn’t capable of coming back at you. I know you think you are being edgy, but the real truth is it’s the safest comedy, as there is little danger anyone is going to put you on the spot.  Well, almost no one. If I happen to be there, I just ask for you not to flinch when I call you out for your laziness and lack of heart.  As I said, I defend your right to say what you want. I just hope you do the same. 

I am not telling you that my daughter needs to be beautiful to you. Beauty is subjective. But if you think for a minute she has ever wrecked a photo in my eyes, you are totally out of your mind.

 

Our family was having a tough morning, but Maddie demanded to do her Happy Monday video. You might notice she is rocking a little more heavily because of the stress around her, but she will not disappoint her fans by skipping a Monday.

 

Here is something that you might not expect to hear, but my wife Susan and I were not stunned when Maddie was initially diagnosed with autism. After having test after for a very long year trying to get some information on why our little girl was having major developmental delays, we just wanted someone to give us some answers. Also, being diagnosed on the spectrum opens the door to some increased services that are not available without it. So we were not hit that hard by the words your daughter is on the autism spectrum.

It was the next part of the Doctor’s conversation that left me feeling depressed…

You should be aware that there is a good chance Madeline will never marry, never be able to hold down a full-time job, and a good chance she will live with you the rest of her life.

I had done some research about autism, but I guess I hadn’t let myself acknowledge that these were potential outcomes for her. Now I will promise you these words felt like a punch in the gut. I had all these dreams and fantasies about what my little girl was going to do in life and it seemed like most of them were now out of reach. I tried to keep a happy exterior around my wife, but internally I was very depressed for a couple weeks. Then I had an epiphany. These dreams and fantasies weren’t Maddie’s dreams and fantasies, they were mine. My job from now on was to help her live her dreams and fantasies. 

Now I don’t know the definition of what makes a man, but I point to this moment as when I feel it officially happened for me. I became less selfish. Unconditional love needed to take over.

We have been told by lots of therapists/teachers that as parents, we have been ahead of the curve in embracing the reality of Maddie’s autism. I think that has a lot to do with both us being realists who try to take in as much information and advice that we can and then we proceed from there. Maybe this seems a little too cold and calculated for some, but 1 major piece of advice I will give any new parent of a child on the spectrum is that you don’t have time to fuck around. Literally and figuratively. Pretty much the only definition of getting busy you are are going to have to concern yourself with is to make things happen for your child.

What are these things I’m speaking of? Well, unlike when someone is diagnosed with a disease, autism is a disorder so there isn’t a simple medical path you are given to help your child’s development. The best thing you can do is to search online and also contact an autism advocacy group so you will know what therapies are available. Kick it! You gotta fight…for your right…for therapies!

The more time has gone by since the Doctor gave us the real truth about Maddie’s future, the more I appreciate his candor. It greatly helped me understand what was going on and while it took me a couple weeks to really process these statements, but when this epiphany happened, I was then able to get started with what needed to be done to help my girl. I feel a little angry when I hear about a parent of a child who clearly has major developmental issues occurring, but hasn’t had them tested. You can’t just wish away autism.  Keep in mind, the day you have a baby you are no longer the most important person on your radar. Time to take off your skinny jeans and put on your man pants because lots of shit has to get done.

The best moments in my standup career have been since I’ve been sharing my story of having a child on the autism spectrum. So many people that have someone they love with special needs come up to me after the show to tell me how much they appreciate my perspective on the subject. I have been privileged to share some special moments with these fans, as they tell me stories about a person they love. They are part of the same tribe as myself.

Last year following a show in Detroit I had a memorable moment. Some guy comes up to me and says So you have an autistic kid? Let’s begin with that. If I hear someone say something like this, I generally know they have little knowledge on the subject. I’m not saying you are a bad person if you say something like this, as it’s not a prerequisite in life to always say the perfect thing, but I promise you I would never describe my girl that way. My girl is not autistic first. She is my beautiful girl first. It might seem like semantics to most, but the reason I mostly use the phrase “autism spectrum” is because people with autism are so diverse that it seems unfair to label them all with just one word. Spectrum helps me denote the wide range of people that are on it.

As I said, though, I tried to keep an open mind to this guy, despite internally flinching a little at his initial sentence. He then offered this up. My girlfriend has an autistic kid too. Let me tell you, some people annoy the shit out of me. I was at the store the other day and someone was staring at the kid. Well I told them to quit fucking staring and focus on something else. 

At this point, the guy seemed pretty impressed with himself, which is why I’m guessing he wanted to tell me this story. I know what he wanted was for me to slap him on the back and congratulate him for standing up against these staring people. Instead, I just wished him the best of the luck with his girlfriend and told him to treat her well, because she has went through a lot as a mother with child on the spectrum.

Here’s what I took from our conversation. To me this guy was no hero. He was someone embarrassed by his girlfriend’s son and was constantly looking around to see if other people were judging him by being with the boy. I would bet big money that he is no longer with the Mom. As hard as it can be for a single mother of a child with special needs to meet someone, an insecure lout like this guy would have been a bad addition to the already chaotic life they were living.

Here’s a little secret that parents of children with special needs don’t usually share. When we are out in public, we rarely have anytime to notice what other people are doing, as our focus is trying to navigate the bumpy road which our child is trying to navigate. I truthfully couldn’t tell you what other people’s reactions are to Maddie, as my focus is on Maddie first, and then the list I’m trying to get through as fast as I can.  As I’ve discussed before, Commencing Meltdown Engines On can happen as fast as 10, 9, 8…

I will tell you that since I’ve known Maddie was not a typically developing child, I’ve become more apt to look at people that are like her. I feel a strong connection towards these people and whoever is taking care of them. In a world where we as parents of children with special needs often feel alone, I wish these parents could read my mind and understand that I know many of the challenges they live with on a day to day basis. Now when I’m not with Maddie, though, I’m like most everyone else, concerned that these people might take my looking at them in the wrong way. So I know how difficult it can be to choose the right reaction. It’s human nature to want to look at people that don’t fit the norm. That is why the reaction this lout had created the opposite reaction he was hoping for from me.

So what should you do when you see a person with special needs? Start by not turning away. That is the most hurtful thing you can do. Even though society has always treated people with special needs like social lepers, they are not. A smile would be a good place to start. If you have an empathetic heart, that will serve you well. I promise you that Maddie has never complained about someone smiling at her. As I said, it’s a WIDE spectrum, so the social skills of each INDIVIDUAL will run the gamut–which when you think about it, is not much different than typically developing people.

I realize it’s not easy to know how to react around someone with special needs. I have a child who can be hard to predict–even for me. Most cliches are bullshit to me, but the patience is a virtue one is a great place to start. I have no problem with you staring as long as you show my child some mix of patience, empathy, and especially if you add a smile. Come to think of it, that’s a pretty good formula to treat everyone with. I know I would be better served if I treated others that way. Well, except hecklers.

Maddie decided she wanted to start with the pledge of allegiance, but then it diverges into a metaphysical break about God. (Note: Ron is the name of her bus driver last year who passed away. He is still an important person in Maddie’s thoughts.)

Maddie becomes completely infatuated with someone every few months. It’s like puppy love to her whenever she thinks of that person or mentions there name. These people fit 3 categories; teaching aide, bus helper, or during the summer, camp counselor. Her current crush is a counselor at Easter Seals Crossroads’ Camp Abilities.  Like a typical almost 10 year old girl she gets these crushes, but unlike most girls who focus on a Justin Bieber-type, Maddie goes for someone who shows her attention and love back.  Kind of evolved when you think about it.

When you have a child with special needs you try to make as few trips out in public as possible. You try to plot these excursions out like there is a zombie war happening outside your window, with dangers lurking around every corner. Since your home is the most controlled place you have to keep your child from having a meltdown, you end up holing up as much as humanly possible.  We are not agoraphobic. We actually would love to get out of the house, but the negatives often out-weigh the positives for doing so. Going to the grocery store, though, is a necessity that can’t be put off.

Continuing with the theme of trying to keep many of my single male readers interested here, my next analogy following zombies will be superheroes! (Scott tip: Pandering is good if it helps get people to what you really want them to read.) When you leave the house with a kid on the spectrum, you sometimes feel like you need to have a utility belt. A belt with all type of weapons that can slay the demons that are liable to pop up when you are outside the Hall of Justice. For Maddie this would begin with a pair of headphones to keep any loud noises away. Make sure to have tissues handy, too, as my girl tends to be a projectile sneezer, producing runny hangers that will sway down to her neck. For quite a long time the belt also needed a chewy tube, which is a rubbery tube that helped her get sensory input when biting on it. Besides helping calm her, these tubes kept her from chewing her own clothing or many things worse, which were damaging her teeth.  All of these items are/were part of Team Maddie’s mechanisms to help keep her from losing it at the local A&P.

Maddie likes to pack a few things with her when she goes out.  Maddie brings a backpack almost wherever she goes. It kind of serves as her purse. The more weight she puts in it, the better. This need for heavy weighted things is called proprioception. (Please don’t leave me now, I realize looking at that word hurts your brain, but I promise there are some good stories below the technical understanding section.) The best definition of proprioception I have found comes from an article by Jeannie Davide-Rivera. She writes a blog called Aspie Writer. Jeannie has first-hand knowledge of proprioception as she grew up as undiagnosed person who as she describes was stumbling through life with a form of Autism called Asperger’s Syndrome. It took her 38 years to be properly diagnosed. 

Proprioception refers to one’s own perceptions. It’s an unconscious perception of movement and spatial orientation controlled by nerves within the body.

Our proprioceptive system allows us to locate our bodies in space, to be aware of where our arms and legs are in relation to one another, as well as, where they begin and where they end. Proprioception helps us perceive the outside world, telling us whether our bodies are moving or sitting still.

This system helps us perceive the amount of force needed to complete a task, and then allows us to apply it appropriately. It helps us measure and perceive distances, allowing us to move through our world without crashing into everything around us.

Child and adults with autism often have difficulty with proprioception and very well may just be the thing that goes bump in the night … and the day, and at work, and in the streets. Poor proprioception may likely be responsible for those many bruises, skinned knees, and torn stockings that plague our days.

 

While a “normal” person unconsciously perceives and is aware of each step they take, an autistic person must think about and focus consciously to perceive what comes naturally to others.

Not long ago people with special needs used to be referred to as simpletons. How completely asinine was that? I can guarantee you that Maddie is way more complicated than any other person I’ve ever met. Life for her can seemingly be like one big-ass obstacle course and she’s not exactly Kyle Rote Jr. or Renaldo Nehemiah finding her way through it.**

**Reference to Superstars competition that used to air on ABC. I could’ve gone with a young Scott Baio if I was referencing the Battle of the Network Stars version . Younger readers might remember the obstacle course talents of Herschel Walker or Jason Seahorn. Yes, I know I’m strange.

So lets get to the contents in Maddie’s backpack. She has never watched more than a minute of the Mickey Mouse Club, but for some reason Minnie resonates with her. We went to Disney World last summer and I can’t remember Maddie once being interested in wanting to see the real-deal Costume Character. It’s her security blanket. It’s not about the voice or the personality that bonds her to Minnie, she just likes how it looks and feels. It’s a Maddie thing.

She also likes to jam in old school homework papers and pencils, as pretending she is going to school makes her happy. Oh and she must bring a basketball. She loves basketballs and our agreement is that she can bring it with her in the car, as long as she doesn’t bring it in the store. While this is the agreement, every other time we go to the store she nonchalantly gets out of the car with the ball and begins to bounce it in the parking lot. If I let her bring it in with her I’m afraid she’d be dribbling down the aisles running a fast break like Chris Paul.  Well maybe more like Cliff Paul. I promise you she has been told it stays in the car and it’s not like while we’re driving there I’m playing Sweet Georgia Brown on the stereo, but she still pushes me. This leads to a frustrated parent yelling Come on Maddie, you know you can’t bring the ball in the store! Much of the time in public I know that I appear to be a crazy person. At this point, appearances could be correct.

For most parents of young kids, the cereal aisle is the toughest one. That was never a big issue with Maddie, but the frozen food aisle was a different story. For a couple of years whenever we got to this aisle, Maddie would make a break for the doors, open them up and put her tongue on the inside cool glass. It wasn’t like it was so cold that she was going to reenact the recess scene from a Christmas Story, but you really aren’t that wild about your child tasting the germs of every grimy grocery customer. When she first started doing this I will admit this was one of the few times where I was a little embarrassed by one of her strange behaviors, but eventually I got past it. I’m glad to say that she eventually got past it to, as this compulsion ended a couple of years ago.

The best way to keep Maddie from acting up at the store used to be putting her in the cart. If you have seen the great HBO biopic about Temple Grandin, you would know that many people on the spectrum love to find confined spaces. Grandin designed a thing she calls the Hug Machine that would help calm her down from the deep tissue stimulation it would provide. While a shopping cart doesn’t give the same exact stimulation, I’m guessing the tight confined space of it helps her with all the over-stimulation she feels from the bright lights and sounds that a grocery offers up. Now putting a child in a cart is not that big of a deal early on, but that really starts to change by the age of 5, especially when you take into consideration that Maddie has always been in the 90 percentile for height and weight. Still, you do what you have to do to get groceries, so even at the age of 8, I would hoist my 80 pound girl into the cart, if it was needed.

I’m happy to say over the past year she hasn’t been demanding to be put in the cart, but the meltdowns continue. A number of times she has thrown herself to the floor and yelled NO! when told to stand back up. These are the worst because you can’t reason with her and she gets louder if you try. You can’t physically lift her up anymore because besides her now weighing in at 85 pounds she also goes into dead weight mode like a Vietnam sit-in protester. A big reason I workout is to be able to handle situations like this, but when she does the dead weight, I start wishing I could afford to get on the juice or at least HGH.*  What ends up happening, as people try to steer around us, is me squatting down by her and promising a special treat if she will rise to her feet again. This works, but you feel like the worst parent in the world. Talk about encouraging bad behavior. Don’t think just because a child has developmental disabilities they aren’t capable of some clever hi-jinx to get what they desire.

One of the major side effects with using steroids/HGH is your balls shrivel up. Considering I drive a minivan already, can’t see how much more damage I would suffer. 

Now a logical answer after reading so far would be hey Scott, leave her at home. Here’s the problem with this point. Maddie loves to take car rides and she hates being bored at home. She will promise that there will be no outbursts from her. If you don’t take her she will spend most of the time you are gone melting down at home. Over the past couple of months she has made things a little easier as instead of melting down in the store, when we park she will start to yell and scream about how she doesn’t want to go. Ok, calm down Madeline. We will go back home. Often her passionate response when you start driving away is I want to go to the store! I will be good! While this is new when it comes to being in the parking lot of the store, this type of manic decision-making has happened with Maddie for a long time. She is so distressed when this occurs. It breaks my heart sometimes how tough life can be for my girl.

As much as you try to be 3 steps ahead there are always landmines that you never see, though. Recently I was grabbing a couple of things and turned around to see Maddie chewing on a chicken wing. They had recently put in a chicken wing stand that I hadn’t accounted for. Now open bar seems to be universally good, but not when it has chicken wings in it and Maddie is on the loose. Where most people would realize it’s intent, Maddie saw it as just one big-ass sample display. Channeling a seasoned TV cop, I calmly told her to step away from the cart and drop the wing. She responded by taking one more bite and then tossing the half-eaten buffalo appendage like a drug courier throwing the evidence out the window during a car chase. I watched in slow-motion hoping it would land helplessly to the floor. Nope. Right back into the display of undamaged poultry. I promise you I really wanted to do a hit and run and flee the scene of the crime, but instead I told the manager and they cleared out the bin.

The toughest moment is following next. Parental Discretion is advised.

I can remember being at a grocery store, by myself, with my daughter on the spectrum and her twin 2 yr old siblings (at the time.) This was not something I had ever attempted to do before, but I’d been overcharged over 5 bucks for some Mexican chip dip and and had come back to get the refund. Normally I would have just let it go, but the only reason I had bought this dip was it was a last day for the sell-by date, so I threw caution to the wind and purchased it. I don’t know who these 7 dollar paying Mexican dip people are, but our budget doesn’t allow us to enjoy an extreme luxury like that.

Now I knew I probably had about a minute before things would escalate, so I was focused on the task at hand. I spoke to everyone in the van on the way, plotting out the details of this like a bank robbery. Considering that developmentally I was talking to a trio of 2 year-olds, I’m doubtful they understood the magnitude of my plan, but as I mentioned, my sanity was questionable at best during this period. I can’t say we were striding in like the dudes from Reservoir Dogs, but we did went anywhere we were guaranteed to make quite an entrance.

Strolling up to the return desk the woman manning its counter was busy gossiping to another employee. We waited. The minute went by. I wished it was a situation like when you are at the park and a ball gets away–so I could just hold my hands up and say a little help, but despite what you might think, I’m actually a very polite person who always waits my turn. So my anxiety reaches 10 as I could feel the ticking time bomb behind me about to reach detonation. Maddie was manically rocking back and forth, as patience is not a facet of life she has ever mastered. Inside I was feeling just as manic, as patience is not something I’ve ever mastered, either. At this point, my youngest (Princess Pistol) started screaming, which set off Maddie, since loud noises usually create an instant volcanic eruption. Oh and I don’t want to forget that while this was going on, my son had realized this was the diversion he’d been looking for and he wandered off to check out the candy bars.  I had 2 girls crying their lungs out and an escaped convict. (My boy was looking to eat and run.)

Now if you want to get a store employee’s attention, bring my crew with you.  This did force the woman behind the desk’s hand and she finally asked what I needed? (Top-notch customer service!) I put the item up on the counter and showed the receipt, while multi-tasking like a mo-fo to try to somehow put out the 5-alarm fire. Well the woman rang the item through and said that this wasn’t the right item. I grabbed the receipt and showed her again. She explained that even though it was the same product, I had bought 2 and only 1 had rang up wrong. I had brought the wrong one. I tried to explain over the cacophony of screams that were going on in the background that they were the same product. Sorry sir, she responded, but there was no sorry in her voice. I walked away pushing 3 screaming young children. (It had went up in number by this time, as I yelled at the shoplifting toddler that we don’t run off from Daddy!)

I got everybody in the van and shut the doors. As the hysterical crying continued, I just sat there stunned. I was broken. It wasn’t the first time and it wouldn’t be the last. I had spent 2 years on the verge, but this moment put me into a full-on nervous breakdown. It felt like the last ounce of my vitality had been drained. Total desperation overcame me. The only thing I had to push me forward was knowing in a few hours Susan would be coming back home from work. I started up the van and cranked my White Stripes CD to try to Icky Thump myself out of this nightmare. We headed home. I can imagine what it’s like to face these challenges as a single parent and I wonder how some days these people are able to manage. I tip my kangol to the incredibly strong human beings that are on their own and pushing on.

These are just a few of many incidents I could discuss at the store. I will tell you that as I wrote this I struggled with how much I wanted to share. My number 1 concern is about protecting Maddie, but I also feel a responsibility to helping others have a better understanding of the challenges people on the spectrum, (and their families) face. Sometimes I am asked what can I do if I see a parent struggling with their child at the store?  My recommendation would be for you to feel a little empathy and try to clear out of the way until the fireworks end. Oh and definitely make sure to shove a crisp $20 dollar bill in the back of my pocket as I make my way out. Thanks again for your patronage!

Once we had so many options
Once we had dignity and grace
Now we have got nothing but our own time to waste.

Predictable
Yeah, that’s the word of the year
Predictable
All I see, all I hear
Why can’t it be like never before?
Predictable
Yeah, ain’t life a bore
Predictable
Life gets more and more…
Just like I’ve heard it all somewhere before.
Predictable
Sure as the nose on my face
Predictable
Same for the whole human race

–From the Kinks 1981 song Predictable–

As I get older and get set in my real world life, this song gets more and more profound. I say this even though I know my job as a standup comic keeps me about as far away from predictability as any profession could.** What you might not know about being a standup is that as much as I like the new experiences it brings, the thing I hate the most about it is how it isn’t Predictable. I have to hustle week to week to book myself. Unless you are one of the few comedians who can draw a large audience, you are constantly scrambling to get work. There is no health insurance or paid vacation. I can’t file for unemployment benefits. It’s definitely not an ideal scenario for raising children, but after 20 years in the business, it’s kind of late to start up a new career. With my job experience I’m afraid the only other thing I’m qualified to do is hold a $5 dollar pizza sign outside of Little Caesars.

**Rock star is the only gig I can think of that would be less predictable. Considering this, how did Ray Davies manage to write this? Impressive. 

The best answer I can come up with to the question of what is the key to being a good parent is Be Predictable. I used to have a joke in my act that spoke to this. I grew up with a manic depressive father who was so abusive that during his mood swings I used to wish instead he had a drinking problem…you know…so at least I could predict when he would hit me. As dark as that is, there is a simple truth in the joke that children need structure. Sure kids love the occasional happy surprise, but if you think by showing up a couple times a year with a bike or a new X-box only to disappear again, that this will enable you to be seen as some type of a champ, you are delusional. The annual shiny Schwinn doesn’t keep you from being a deadbeat Dad. The most important thing for kids is they can count on you to have their clothes washed and their dinner made. You have to show up. They need to know that you will be consistent and that you will be there for them when they need their basic needs met.

This predictability is only magnified with a special needs child. Keep in mind that the world around is often very confusing to them. It’s noisy, it moves too fast, and it’s scary to them because it’s so unpredictable. For these kids, having a place with structure that offers them few surprises is more important than anything else.

Maddie is the perfect example of this. What will set Maddie off more than anything is not knowing what her day holds. This is where I think her Happy Monday greeting comes from because on Mondays the structure of school or summer camp starts up again. Monday follows a weekend where things don’t work as well for her. Remember that she doesn’t like to watch TV or play with toys. She wants interaction with someone who can facilitate some kind of action to keep her engaged. She can’t do this on her own. That’s why she believes so strongly in TGIM. (figure it out.)

The first thing Maddie says when she gets off the school bus in the afternoon is what we gonna do? It seems like a fairly innocuous question, but it often chills us to the bone. Let’s say you have an answer for it, then the next question that will follow is, what we gonna do after that? As her parent it feels like some kind of sadistic Abbott and Costello routine that never ends. I’m sure some of you would think, well you just need to string a few things together. How hard could that be? And the answer…What is REALLY FUCKING HARD, ALEX. If you don’t come up with the right answers for her, Maddie will often go into meltdown.

Well that sounds like a discipline problem, Scott. You would probably be right, if this was a typical child. Both my twins are told to sit in time out or to go to their rooms if they blow-up over something. Not so easy with a child like Maddie. We have tried this approach with her, but as difficult as it is to impress upon a 5 year-old that parental logic is the right answer for the situation, it basically has no connection with Maddie. She is apt to take a swing, scream at the top of her lungs or try to break something in the house. What will often follow this is some manic behavior of apologizing, but done with no sincerity. This apologizing will be her saying the words because she knows you want her to, but they are spoken with all the sincerity of an informercial selling male enhancement pills.

What Maddie wants more than anything is a schedule. It makes her feel warm inside. In a world that is not built for someone like her, this schedule can help her make sense of it. So no more issues. The schedule solves it, right? I wish it did, but you have to get the right things on the schedule. Oh and there are plenty of times in life where your schedule isn’t going to work with her, because you need to get some stuff done for yourself and the rest of your family. It’s definitely time for me to state at this point that Maddie brings so much joy and love to our world. I know some of this comes off harsh about her, especially when it makes it seem that so much of our life is held hostage by her special needs. I couldn’t write this with any honesty if that wasn’t included, though. It is an exhausting life, but you keep pushing on through because you feel so much love for this girl. A girl who did not ask to be born with this disability.

Sorry to be a bit of a downer today, but not all of life is uplifting. Let me suggest if I’ve left you feeling a little low, bake up some oatmeal chocolate chip cookies and then pull up Hoosiers on Netflix. Enjoy it for me, as it doesn’t currently fit into my schedule.

 

The thing I most want to do with this site is the part of the title that says Let Me Help You Understand. Autism is impossible to explain in a couple sentences, which is why I hope the readers here will get a better flavor of what it’s like to be the parent of a child on the spectrum. Warning: Strap in because today will have some uncomfortable moments.

**Note: I try hard to not make this a place where it sounds like a Oh Whoa is me festival. Sorry, but today will include some of that, but hang in there because I still think you will at least find the following fairly illuminating. 

Before your child is even diagnosed being on the autism spectrum, your life has already changed because kids with special needs of any type take so much more time and focus to parent. You remember your friends that you used to go out with? Not going to happen anymore. The words special needs are there because this child has needs that are out of the ordinary. Needs that the average high school girl down the street isn’t equipped to handle. The person that watches your child is someone you have to trust implicitly. That means it’s close relatives or someone who has been educated in the field. There are so many times in regards to work or doctors schedules that you are in desperate need of help that you can’t waste these opportunities going out to have fun. Anyway, it’s not like the whole time you are out you are going to have a good time–when  your constantly worried your child isn’t having a major meltdown or having an asthma attack.

Besides feeling trapped, you also are just fucking tired. If you are not worn out from having to focus almost all your attention on your little child who cannot do almost anything for themselves, you are exhausted from getting very little sleep. Many kids on the spectrum have poor sleep habits and their parents are often fortunate if they get half the sleep they need. I rarely consider myself lucky about the challenges Maddie faces, but the one plus of her motor going 100 miles per hour is that when it’s time for bed, she is worn out. Unless there is a thunderstorm or she’s extra-excited about what is going to happen the next day (like any typical kid would be), she is a heavy sleeper who will conk out for 10 to 11 hours each night. I know some parents right now are hating me reading this, but this great sleep pattern comes with a price… a day of non-stop Tasmanian Devil energy.

Now we come to the buzzkill part of the story. During the few times you might get a little break and get to talk to a bunch of other parents, you will often feel like an alien. These parents will either talk about 1 of 2 things when discussing their kids.

1. Brag about the achievements of their child. 

• My 5 year old knows all her letters and numbers.
• My toddler is doing great at Mommy and me swim class

It’s totally natural to feel pride about your child. If you are a good parent you are a big part of why that child is achieving these things. The problem is when one of these alien parents of a child with special needs is there, you most likely are going to start to feel guilty about bragging too much.This is especially the case if you have any idea how exhausting life is for this alien parent to get their 5 year old to use a spoon. (or in Maddie’s case, a 9 year-old) This makes the alien parent not as much fun to hang out with. We are a buzzkill.

     2.  Bitch about how their child behaves.

• My 5 year old won’t stop sassing me.
• My potty-trained toddler has been wetting the bed some nights.

It’s totally natural to be beyond frustrated about your child. If you are a good parent you are concerned with your child’s behavior and sometimes you need to vent. The problem is when one of these alien parents of a child with special needs is there, you most likely are going to start to feel guilty about bitching too much. I can tell you personally that listening to someone brag about their child isn’t half as tough to swallow for me as to listen to them bitch about something that seems like a triumph in my life.

So your 5 year-old won’t stop sassing you. Well my 5 year-old can’t say more than 5 words and I doubt you would be able to understand any of those.

Wow, you’re telling me your 22 month-old sometimes wets the bed, despite being potty trained. Oh how my heart fucking aches for you. Maybe this will pull you out of the dumps. Stand a day in my crocs and try changing a 7 year-old’s poopy underpants? Oh and make sure to act joyous while you’re doing it because you know that your constipated child at least got some much-needed relief. 

See what I mean. We alien parents are total buzzkills. While our children are shunned by their peers at a very young age, we start to fall by the wayside, as well. And I don’t blame anyone for it. It’s pretty hard to keep a close friendship with a person if they constantly turn you down when you ask if you want to go out for drinks or come over for dinner. We alien parents would like to but know that our number 1 focus is our special needs child. And let’s say we can find the time to go out with you, how much fun is it for a typical parent to be constantly worrying if they are going to say something that seems harmless coming out of their mouth, but will be soul-crushing to a certain extent to the alien parent? No I get it. No matter how charming and fun we used to be, we are a tired, frustrated buzzkill most of the time to a parent with a typically developing child. If we were really to share the truth of our stories, your complaints would seem about as valid as complaining of a brain freeze after eating a pint of Ben and Jerry’s.

Now you might think the answer might be to friend up with some other parents of a child with special needs. Well if you think it is hard for just 1 of these alien parents to make their schedule work to meet for just coffee, trying making the equation work when you have 2 alien parents. Oh and here’s another Catch-22 element. As much as we appreciate being around someone who actually understands the struggles we have, when we get the chance to escape we need someone who brings some positive energy to the festivities, which isn’t something an alien parent can usually muster. Two storm clouds together isn’t the optimal experience, even if they meet on a sunny day at an outdoor cafe.

I have no doubt that the majority of parents of a special needs child suffer from some pretty severe depression, especially in the first few years. I’m also guessing that most of these people don’t take any anti-depressants because we rarely have time to go to the doctor for ourselves.  I’m pretty positive that very few get any psychiatric care because our finances don’t provide for that type of cost and our insurance already is being drained from our child. Hey, but at least there’s self-medication! Well, not even that is typically an option because if you are by yourself, you have to stay sober so you can deal with any potential catastrophes that generally seem to be just around the corner. So as much as it’s needed, it is rare the moment when we can say It’s Miller Time.

(Time to play the superhero music) What keeps parents of children with special needs from laying in the fetal position all day? Simple answer. We have no choice. Shit has to be done and we are the ones that have to do it.

Man does this read depressing. Sorry if this has bummed you out, but believe it or not, this was me actually sugar-coating it. These things I have outlined are the reason that so many parents of developmentally disabled children hole-up in their homes like they are a sect of the Branch Davidians. Fortunately the internet has helped us alien parents some, as we can find the time after a long day to email a friend. By the end of our long day, we often look so battered that we don’t want to be seen, but we can instant message you. Just please just don’t ask us to Skype. You see, after the day and night we have had, the last thing we want to do is present some Facetime.

Postscript: I should mention that I’m lucky to have a job which enables me to have something better than even friends–fans! Fans just want to tell you how much they enjoy what you do and for the most part leave you alone after. This short-term adulation is really a great deal for someone like me who has a hard time spending longer periods of time with people. Fans almost make the lousy pay and low-grade travel 99.9% of comedians suffer from worth it.  

Today we see Maddie at her summer camp place. Easter Seals Camp Abilities is a place that gives her much needed structure.

Rolling down a new suburban street of 1 of the 10 best places to live by one of those money magazines, everything seems peaceful and calm. But if you peer into the 12 year-old minivan racing to get home, you would see a 9 year-old child screaming in the back, kicking the seat in front of her, and reaching to punch anyone within her reach. You then would hear the father yelling to his 5 year-old son to unbuckle his seatbelt and climb in the front so the boy doesn’t get hit by any of the shrapnel of someone having a full-fledged meltdown. You would hear the other child in the car, an upset 5 year-old girl, telling her older sister to stop making poor choices. Driving at this point is about as safe as a drunk person texting while also scarfing a hard-shell taco. Hey Jeff Gordon, try this sometime if you want a challenging drive. We are talking total insanity and the worst kind of adrenaline rush. The father feels terrible that this is part of the atmosphere that his children grow up in, but some thing’s are out of his control, as much as he tries to make sure they don’t happen. This is my family and I’ve lived a version of this story dozens and dozens of times.

The first thing I would tell parents of a child who has recently been diagnosed with autism is that it is now your Number 1 job to fight like hell for your child’s welfare. Your biggest enemy will be your insurance company. You are not your insurance company’s friend and they will do everything they can to keep you from getting the services your child needs. I know this sounds horrible, but I’ve never heard a parent with a child with special needs say anything else but this being the facts.

The dictionary definition of autism is this:

A pervasive developmental disorder characterized by severe deficits in social interaction and communication, by an extremely limited range of activities and interests, and often by the presence of repetitive, stereotyped behaviors.

This is true, but only scratches the surface of what it means to many people on the spectrum. There are many physical health issues that aren’t included in this definition. From gastronomical issues to immune deficiencies, a person on the spectrum can be a very expensive proposition for insurance companies. And this is not even discussing the thing that sends money out the door the fastest, therapies. So while the insurance companies will claim they are going to give service to these people in their actual policies, they have systems set in play to continually deny these claims. It’s part of their business bottom line. They want to make it so difficult that you eventually just give up.

In regards to speech therapy, our family eventually did this, as we were concerned our credit rating was going to go down the tubes constantly fighting for the benefits that were in our policy. Assholes 1: Family with special needs child ZERO.  These companies know that you don’t have the time or energy to keep challenging them, so they keep biding their time pushing denial letters your way and making it nearly impossible to get to anyone on the phone who can make a decision in your favor.

One thing we can’t do without is Maddie’s medications. We have tried diet and behavioral strategies to help Maddie with her outbursts, but the only thing that has worked for us is pharmaceuticals. Before I had a child on the spectrum, I was part of the group of childless adults claiming that we are overmedicating our children. Now, I stay out of that discussion, as I know these pills have helped give my daughter some stability.

Recent studies show that nearly 1 out of 3 kids on the spectrum have ADHD. That is definitely the case with Maddie. I have described her engine being one that is constantly running at 100 miles per hour and I’ve told doctors if she could just get it down to 70, she would be able to learn and function so much better in life. Let me tell you it’s pretty traumatic as a parent putting a 5 year-old girl who has the developmental age of an 18 month old toddler on some mood-altering drug, but you eventually reach a point where you have to do something.

When we first decided to put her on some medication to calm her it had to do with Maddie not being able to speak but a few words and having major learning problems because she had very little attention span in her early childhood classes. We were looking for a miracle, but the first couple medications we tried were far from it. They made her more agitated. The second one totally freaked her out. This is pretty typical, as just like there are few roadmaps to raising your child on the spectrum, one drug does not fit all. We decided at this point that we weren’t going to put our little girl through any more of these. Time to put your head down and try to survive the storm…until the storm gets too great and you wind up back at the specialist to see if there is anything that can save your family. Desperation is a word that should only be used during desperate times. I promise you these were desperate times were ahead.

We came back a year later, with twin babies in tow. The addition of these 2 had not been a joyous moment in Maddie’s life, as twin babies are screaming machines. To a girl adverse to loud noises, the only thing worse to bring home would have been a couple offensive line coaches. She was constantly trying to physically act out towards the twins. She would also physically bang her head against the wall until she would cry. It was breaking our heart as we didn’t know how to help her. My guess is her behavior had something to do with formerly being a girl who had gotten a 100% of her parents attention and she was going to find a way to get it back, even if it took physical pain to get it.

So when we walked back in the doctor’s office again, we needed help. Susan said it perfectly. We are a family in crisis. A big reason we hadn’t continued on the pharmaceutical road was that the next drug being recommended was a big step-up. A drug designed to help those with psychotic impulses.   The doctor told us that one of the side effects is it would make her potentially groggy. My response was we can only hope. I know some reading this think that is a horrible comment. A parent hoping that some drug could make their child groggy.  All I can say in my defense is unless you also have a girl who is amped up like she’s drinking redbull out of her sippy cup and is also having violent outbursts because her brain is setting off receptors like the 4th of July, you have no idea what it is like. When your child doesn’t respond to a structured schedule and still acts out after you put a gluten-free metal detector at all your doors,  you are desperate, looking for about anything to help her and your family.

In case you are unaware, you have to slowly amp up the drug, but we started seeing some positive results right away. She was a little more calm and less manic. Some might feel this drug is taking some of Maddie’s natural instincts, but I felt like it was helping Maddie become more the girl she was supposed to be. Over the past 4 years she has been on this drug, taking a little more as she has grown. After she started to backslide some we added another drug to the mix a couple of years ago which has helped her with her impulse control. Maddie was far from calm, but she at least didn’t seem like she was on a constant tweeker binge.

So finally we get back to the Minivan. What had happened to cause Maddie to flip out? Over the past 5 years our friends at the insurance company had raised our private policy rates from 700 dollars a month to 1400 dollars a month and they were set to boost it another couple hundred. Keep in mind our deductible wass super high and we were not getting any therapies, so they were definitely making money off of us. Despite this, I’m sure their algorithms tell them to keep gouging since a family with a child with special needs is always a potential money loser. At over 1600 bucks a month, it was time to pull the white flag out. Assholes 2: Our family still at ZERO.

Even though it was going to be nearly impossible with our schedules, Susan decided to amp up her hours so she could qualify for health insurance at work. It would leave us paying about half of what we were before, though some of that savings would be swallowed up by paying more in deductibles, especially impactful when it comes to the cost of prescriptions. Still we were going to be able to make it work, as long as we could drop one of her drugs, as it was going to cost us around 200 dollars a month more than before. We weren’t sure this latest drug was doing that much for her, so we decided to take her off it.

We slowly started to ween her off it. It didn’t take long, though, for us to figure out that this drug had been working. Maddie started behaving badly at home and at school. This is the kind of going broke versus trying to do what is best for your child decision that parents of children with special needs have to make all the time. We came up with the best solution we could by going to a generic that isn’t a time release capsule like the previous one she was on, but still works pretty well. I can see arguments for both sides on the government health care debate, but not having affordable health care for children and those who cannot take care of themselves is a disgrace. Working families shouldn’t have to go into bankruptcy just to keep a loved one healthy.

I have tried to make this site a place where people with special needs can be celebrated, but I also want to reflect the truth of our situation. Thanks for hanging in on this one with me. Happy Monday is less than 2 days away!

 

 

 

There is a misconception out there that people on the autism spectrum sit around focused on just 1 thing, be it video games, TV, etc. This could not be further from the truth for my Maddie. She has never had any interest in movies and only a handful of TV shows have kept her watching for more than a minute.

The first show she did feel some connection to was Calliou. If you don’t know this character, he’s a 4 year French Canadian albino who is drawn like he suffers from Alopecia. If you ever wished Charlie Brown was whinier and said eh a lot, Calliou is your guy.* Most of the episodes seemed focused on hockey, maple syrup, and Labatt’s.* The parents dress like they own 2 sets of primary colored outfits and 1 of the grandfathers speaks with the fake sound of an out of work voice over actor. Do you get the vision that it’s an annoying show to me? But since it was the first thing that would hold Maddie’s interest for a little bit of time, I will be eternally grateful to those Hosers from Quebec. *my facts maybe skewed a bit.

The next show she started liking was Little Bill. This show was created by Bill Cosby and is a major step-up from Calliou. It has a Peanuts vibe with it’s cool jazz music and simple animation. While not as funny or edgy as Fat Albert, it really is a great show for young kids. Since the death of Gregory Hines, who was the voice of the father, the show ended it’s run, but I would seek it out. In contrast to Calliou, the characters are black and the show is set in Philly, so basketball has a stronger presence than hockey.  There are a couple episodes that Maddie has watched from beginning to end, which is amazing considering her very limited attention-span.

Let me mention at this point that I think it’s a natural reaction to believe that your kids are going to want to watch the same shows that you did as a kid. Well that’s probably not going to end up happening. I bought tons of Sesame Street DVD’s and none of my 3 kids have had much interest in what I consider hands down the greatest children’s show in the history of TV. I mean just look at the diverse mix you have in characters. It’s like The Wire with puppets. 

• Cookie Monster- Is out control with his eating habits= bulimic
• Grover- Skinny, filled with endless energy, and possesses no teeth= crackhead
• The Count- Dresses up in a costume and spends all his day doing math= NERD.
• Oscar the Grouch- Angry, isolated muppet who lives in a pig-sty= Hoarder.
• Bert and Ernie- 2 guys who live together= Not gay. They sleep in separate beds. Come on!
• Elmo- Sweet, happy little guy= Now the guy who has his hand up his ass. Not so sweet and happy:(

The one the thing that is worse than your child rejecting your childhood classics is them embracing shows you really hate. She did do Barney for awhile and it definitely lives up to the hype of being annoying, but I find the Wiggle worse. If you are unaware of the Wiggles, they are 4 Australian dudes who dress like they are on Star Trek, but behave more like they are the Village People. When the best character on the show is fella named Captain Feathersword, I don’t think I have to say much more. So here’s a tip. Do your research to find out what children’s shows are going to make you insane and then be diligent of NEVER letting your kids see them. Some people raise their kids with a Gluten-free diet. My kids have been on a Wiggles-free diet.

The only other show I can recall Maddie watching is Wipeout. You know the water obstacle course show where people get hit in the balls by balls. Maddie is very sensory by nature, which is why the show is so perfect for her, as Wipeout might be the most sensory thing every filmed, well if you don’t include that scene in the kitchen during the movie 91/2 Weeks.

During the past year, though, a miracle has come to our home. The iPad. I bought it for her hoping that it would be this great tool to help her learn more, which has been the case for some kids on the spectrum. The good part was that it did enable her to do things with a computer that she couldn’t manage before, as using a touchscreen is way easier for her than clicking on a mouse. We have bought her tons of educational apps and a few have kept her attention for a few weeks, but the great thing the iPad has brought to Maddie is Youtube. She discovered kids songs on it and it is the first time in her life that she will sit for 15-30 minutes at a time on her own. She uses it like a karaoke machine singing along and it puts her in a happy place. Kind of like listening to speed metal on my iPod does for me.

I’m not embarrassed to admit that I have tried pushing lots of other shows that I grew up loving on her. Outside of liking to watch Pee Wee Herman ride his bike at the end of each episode, none of them ever connected with Maddie. This lack of connection will happen with all kids to their parents, (the only shared program from my childhood that my twins have gravitated toward is Scooby Doo), but it definitely magnifies itself when you have a child with special needs. As hard as you try, there is often such a huge distance between your common interests. That is why when you do find something that does connect you with your child, it is revolutionary to your heart and soul. This is a big reason why I’m such a HUGE fan of the Special Olympics. A little secret about the Special Olympics. They are as important to the parents as they are for the kids. They are the one program that parents can feel some of the same feelings that parents with typically developing kids experience all the time. (So go over to the right of you and buy a damn shirt.)