Sisters

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!