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Everyone Craps Their Pants

Adventures in Autism

Max’s Person

Max’s PersonFor at least 10 years Bill and I were putting one foot in front of the other. Head down -no looking backward or forward. So many things suffered: work, relationships, Harrison, Jordan, Family, friendships, accounting, housekeeping, gardening, hygiene-anything that required maintenance became a bit slippery. Wait a minute-what doesn’t require maintenance?

For a good 10 years I was Max’s person. I took care of most of the duties an autistic child requires. Bill contributed with the things he is really good at like research, getting funding and firing people. He was not in the “inner circle” -who was? Me and Max. Of course Bill would take the kids someplace so I could get a nap-but I was “numeral uno”-the “big dog” as my dad likes to say (about himself of course). 

As Max grew taller we sensed a change in the air. I still had control with him-but this was before he understood what people say all the time: size does matter. When he hit puberty he developed that winning combination of size, strength and anger. Just like any teenage boy -only without all the self control. No self control whatsoever. He figured out that I could no longer chase him, pick him up and take him home or talk him out of candy, candy CANDY! This is when I stopped being his person. Bill stepped up to the job. Well he had to-Harrison was away at college. 

Now Bill was his person and I was following behind and never, ever taking the reins. And the times I did make this mistake I regretted it. Like the visit to Ikea when I followed Max all the way along the path and started the path over again to find Bill where we lost him. By the time we found him, I was flop sweating and shaking-Max was eating the candy he picked up along the way. My biggest fears were not realized. I did not have to spend the night in the bedding department. 

I also could not take him anywhere that they didn’t have family bathrooms. Women don’t appreciate a six foot boy with all his equipment in the locker room if you know what I mean. Who knew?

When in a public place with Max your attention must be first and foremost on Max. You know my old adage-the one who’s pooping on the floor gets the attention. Often you go about your business and try not to gage how well you are doing by the looks on other peoples faces. That is a rabbit hole. 

 We were having dinner with my family at my sisters’ house. Bill was talking about when he takes max swimming at our health club. This is no easy chore. A guy who regularly sees them told Bill how much he admires how hard Bill works to accomplish this task. Now as Bill is telling this story, he is getting emotional. I realize that Bill receives so little encouragement for his hard work and how important it is when you are slogging away with your head down. The negative reactions of people are what we have learned to expect and the positive are so restorative… and rare. 

Shoes

Last Saturday we took Max to DSW to buy a new pair of shoes. This has nightmare possibilities. Getting him to sit for measuring and trying on more than one pair is challenging to put it kindly. I gave up long ago braving it on my own with him. We never got thrown out of a shoe store but…let’s not go there. So after our trip, I thought to myself, self? That wasn’t so bad-dare I say it bordered on easy. Max cannot resist long aisles -they look like landing strips. And they BEG him to run back and forth with wild abandon. This is not unique to him-many autistic kids feel the same temptation. Think about every store you have shopped in-this is no small challenge. I would throw myself in front of him-trying to block this run with very little success. Then I would follow him so he wouldn’t bang into anyone, apologizing to customers and staff as I went. More than once I found him in the ladies dress shoes where he had squeezed his feet into the highest pair of “come f**k me pumps” and was trying to walk in them. I’ve even considered getting a pair in his size so he didn’t do the same with my shoes. Do not judge. 

This day tho-we attacked it with military precision. We walk in and see a familiar and kind face who remembers us…in a good way. Always a good sign. Bill sets out to find the measuring tool and shoes in a variety of sizes. I stand in the middle of the back aisle while Max runs back and forth laughing like a loon. People are smart enough to get out of the way and I say things like “he needs his exercise” and “he is practicing for the upcoming Olympics”. 

We get the signal from Bill that he is ready for us. We measure and try on 2 different sizes and the kind staff member helps us decide. This takes 1-2 minutes. Then with his new shoes on Max resumes his Olympic practice convincing us all that it is the correct size. I go and stand in the check out line while she cuts the alarm thingy off the shoes and they go out to the car. When I meet them there, I am not flop sweating…it’s a miracle. See–easy peasy.

I wish I had some of this insight in the moment but sometimes progress is only recognized when you are looking back.

Vulnerable

Vulnerable
Off to Bemis woods to march among the trees, breathing deeply-we often take Max there on the weekends for a stroll in the park. He loves leading us on the path down to the river so he can then throw rocks in the water. We follow him and attempt (not always successful) to keep him out of said water. This was also the scene of his heartbreaking bike crash,when he went down a hill and forgot (did he ever know?) how to use the brakes. He had minor scrapes and bruises- but we still have scars from that one.
So this Saturday was a perfect day for a walk. Just beautiful. We made sure he crossed the parking lot safely on his way to the bridge to look at the river. It was a holiday weekend so there were plenty of people and families enjoying the day.
We did not realize that the walkway that took him to the bridge had an intersection with a bike path. We were still in the parking lot when out of the woods shot a screaming man on a bike yelling at–guess who– Max. In his mind this guy was riding in the Tour de France so he wasn’t stopping. He thought Max was a typical teenager, listening to his music and not paying attention. At least thats what his profanity laced yelling told us. He did not brake even once. By the time we realized what was happening, Max was frozen looking back at us with anguish.
It seemed to happen in a second (ok-I guess it did) but in slow motion it took a minute or two for me to get to him and for Bill to “lose. his. sh*t”. He yelled after him “HE HAS AUTISM YOU ASSHOLE!” To which the guy responded by giving us the finger. This delightful man looked to be in his 40s. Think.about.it.
Max was scared I think more from Bills’ reaction than anything else. I said to nobody in particular “well that was fun”. The family on the bridge was kind in comforting us and although he was upset, Max did not have a full blown meltdown. Bill and I were shaking. I was close to crying. We gathered ourselves thanked the family and started on our walk.
Why was he going so fast? Why didn’t we see the possible danger? Why did Bill scream at him? Why wasn’t I faster? (Well, we all know the reason for that). Bill couldn’t believe his hair trigger response was so close to the surface. I couldn’t believe how fast our outing went down the sh*tter. And then of course the realization of how vulnerable Max is in ANY situation. We get comfortable in our routines and our expectations of him but every time we are brought up short like this it reminds of how vulnerable Max is and will be for the rest of his life. Well-if they find a pill to cure autism-but until then. Who will protect him when we can’t?

Christmas 2005

   
 

  

Christmas 2004

   

  

   

 

Christmas 2003

This was the year that max was diagnosed  

  

 

Our Move

I took max to one of our favorite parks today. He tried out the swing and
got really high then did a perfect jump dismount. He went around the
playground testing out his usual spots all the while vocalizing in a
high-ish pitched voice. I am so used to this and it drives me mad. It always
sounds like he is in a bit of distressI passed a little girl around 8 yrs old who had a skirt on that looked a bit
like a tutu-that I would have killed for at her age. I complimented her on
her skirt and resisted exclaiming “I would look fantastic in that!”  A
little later she came up to me as I was watching max and said “why is he
making that sound?” I said he has autism and doesn’t speak very much and I
really didn’t know why he did it.  “Maybe because he can’t speak very much
he likes to pretend he can. Maybe he’s talking to us and we just can’t
understand him. Or there’s always the possibility he is practicing to be an
opera singer. What do you think?” She nixed the opera singer choice. I told
her I really wished I knew what he was trying to communicate. He was
repeating “what’s the matter” and “what’s wrong?” Along with an occasional
“I’m not a squirrel! I’m a boy!” Maybe he is unsettled about our move to a
new place. Again I wish I knew. Then she asked if he was like that from the
very beginning-and I explained no-he changed when he was about 3.

The whole time we were talking, her friends kept coming up and asking her to
play with them and she refused every time. She was so curious and earnest I
wanted to hug her! Ok -I know that would be creepy so I didn’t.

And today I realized the real loss in our move to a close but different
neighborhood is that Max will no longer will be surrounded and loved and
accepted by our dear friends who have known him since he was a cute
tow-headed, blue eyed, typical little boy (not a squirrel). They won’t find
his eccentricity cute or funny-they will think he is weird. They won’t
understand what has gone into getting him to this point in his life-how far
he’s come and how much we’ve stumbled. And the worst thing is that they will
be afraid of him because he not only seems weird, he is almost six feet
tall.

And I just don’t know how to make it not so.

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