Saturday, February 21, 2015

The reason I write... or, don't write.

As you have probably recognized from my lack of posting, I'm struggling with my blog. One of the many reasons for my writing is to raise awareness and I am sick of raising awareness. Since moving, I've had problems with raising awareness. That problem is mostly the people who are becoming very aware. Obviously, more aware than they'd like to be. I've had enough. It's too hard.

One day, on the way back from a visit at Mommy's, I took Alex to a pretty remote gas station that was the only one on the way home. Alex flipped out. All I wanted to do was pay for my gas and go home. He just wanted to go home, gas be damned. I took him in with me and had a very hard time holding onto him while he tried to escape and loudly stimmed his objection to being in this place. (It was dirty and cluttered and didn't smell very nice, as remote gas stations usually are, so I can't blame him. But, it's the only one on our path home.) One of the cashiers was busy and the other quickly made himself look busy. I could have chalked it up to laziness instead of a refusal to wait on us if the woman in front of me hadn't taken a hundred years to buy her lottery tickets while we stood there struggling to stand in line, and the man continued to make himself look too busy to take my $20 until the split second someone stepped in line behind me. Then, without hesitation, he offered them a smile and gestured them to his register. We now drive the extra 7 miles down the highway where the friendly and chatty cashier thinks my son doesn't answer her questions because he's shy.

One day, I had to take him with me on errands. He was having a pretty good day until I messed it up by taking him places he did not want to be. I was out of deposit slips so we had to go inside the bank, he protested by throwing himself around to escape me and loudly letting me know he wasn't happy. When another teller opened her lane and called us over, he bolted while I tried to fill out the deposit slip she gave me. I chased him down and brought him back. She offered to fill it out for me while I held onto the squirming, unhappy child. She had no problem giving me a few extra slips so that we could use the ATM again. It was not a good trip, and I'll be damned if my uncle wasn't at the next window to witness the whole thing. He made small talk as if nothing was out of the ordinary.

After the bank, I had no choice but to go to the pharmacy. Some of the boys' prescriptions can't be called in. The paper copy has to be handed to the pharmacy staff to be filled. Alex was doing pretty good, so when she said that the prescription could be filled in 5 minutes if I'd like to wait, we waited. I sat him in a chair and tried to entertain him, he was willing to be entertained. When he dove out of his chair and knocked me on my butt with his hug, I caught the cashier's smile. Then I realized a pharmacy probably sells diapers. He tried to clear the shelves as I tried to calculate size. By the time we were ready to check out, there was quite an audience gathered, just waiting for our style of awareness. He pulled and dropped and tried to get away as we were checking out. I sat him on the counter in front of me and wrapped my arms around him as I tried to sign for the prescriptions. I swatted his fingers away from the pin pad as I tried to enter my number to pay for our purchases. I had just hit "enter" when I felt him slap the entire overflowing basket of complimentary car air fresheners off of the counter. I had one hand on him as he flopped around in the floor like a fish out of water and the other hand gathering as many pieces and I could stuff back in the basket before slapping it on the counter and apologizing while I reached for our bags. I made the mistake of making eye contact with another customer. The look on his face had me blushing even more as I grabbed our stuff and bolted. Driving home, I cried.

We go to DeSoto Wal-Mart even though we are closer to Festus because it's not as crowded. As long as I avoid noticing the other shoppers, we're good. There hasn't been a huge catastrophe yet. Oh, there have been looks and comments, I just actively avoid seeing them. My boyfriend tells me about them after, which I am fine with, I like hearing his stories, I love the way he sees things. There are some good people there, and there are some that I am thankful not to have seen. One day I didn't want to make what seemed like a long drive just to go to the store, we went to Festus. I found a parking spot and parked. I sat back and sighed. I thought of the stroller and the people and the looks and ... I just couldn't. I looked over at my boyfriend and I said, "I don't want to do this. Not here." My boyfriend looked back at me, understanding what I was saying, "then don't." I'm so sick of raising awareness. It's too hard.

We ended up in DeSoto. Walter wanted to go look at electronics. My boyfriend has him interested in audio stuff. So, fine. I sent them off, taking Alex with me. It'll be fine. He's in his stroller, we're in his favorite store, we're fine. Except we weren't. I'm not sure exactly where things went wrong, but the tipping point was the valentine aisle. One of the reasons I sent the guys off to play was so that I could get a card. By the time we left that aisle, I was flustered and bleeding. By the time we made it to the grocery side, I was close to tears. That's where I ran into Alex's kindergarten BFF's mom. I talked to her on the phone a couple of weeks ago about PTO business. She has such great stories about her daughter and acceptance and how the kids in her other daughters' lives are aware and they like the BFF for who she is, they see that she is just like them but different and they like her. Awesome, right? I think so. I was hoping she wouldn't notice us because I just couldn't handle people right then, but she did. Caught up in what she was doing, she still noticed. She looked up and greeted us, all friendly like. Then she really looked and noticed Alex in his stroller. The look of surprise was the last straw. Alex is one of two kids in his entire school with a Behavior Intervention Plan and I had to call the state to make sure he got ABA and kept his BIP. One of the drawbacks of a school with 34 students. I see lines of kids who walk nicely down the hall without a 1:1 aide who can never, for even a second, take their hand off of them. Alex's behaviors make him a danger to himself and others, especially himself. In his stroller, he's not throwing himself to the ground or bolting. I don't even have to buckle him in, he's happy to sit there and be pushed through all of the wondrous aisles of this magical kingdom. He's even started asking for Wal-Mart by name, which is huge considering he doesn't name the majority of his siblings or parents. She wasn't rude, she didn't say a word, but the surprise on her face was just the end. I've had it. I grabbed the cleaning supplies I absolutely had to have and made a bee line for electronics. "I'm done. I don't even care. We need to go now." I don't know if there was something in my look, or something in my tone, but a glance at the cart to see I bought no food, there wasn't a single argument from my boyfriend or my son. We left without the groceries.

Someone contacted me recently about starting a blog. They want to start writing about something important to them, and they don't know where to start. I told them to figure out what they want to do with their blog and start writing. Several times in our conversation, they said, "maybe it's too hard." It pissed me off. Whether or not it's too hard depends on if it's worth the effort.


I know. I'm going to hell for that one.

It's relatively easy to advocate for acceptance in a place that awareness has a good start. In a place where the majority are unaware... where the school will be the first to tell you, "if we can't control their behavior here, we have no business taking them in public."... where the Speech Therapist calls the vocalizations of an autistic child "animal sounds"... and a middle aged man has never seen such a scene... it's fucking hard.

Whether or not it's too hard depends on if it's worth the effort.

 It's about more than the possibility of not getting horrified looks when we step into public, of people being politically correct. It's bigger than what happens in the grocery store or the gas station. Those are the small things that trip you up.

The problem, simplified, is that Alex doesn't have a school website or a tweeting Superintendent. Sounds small, doesn't it? Alex goes to one of Missouri's 35 State Schools for the Severely Disabled. The question I keep getting is- why do you need a website? I have a thousand answers for that depending on which view you want me to look from- school staff, parents, PTO, a member of the community... I can tell you about the need for transparency, accountability, access to educational resources... I can tell you about how much easier it would be to find all of the information I need in one place... but the question isn't why I need a website. The question is why doesn't the MSSD have websites for their schools, when school websites have become the standard for public schools? The question is why don't I and my son have access to the same educational tools and resources that his nondisabled peers do? Why do we not have the same insight into his school that the parents of his nondisabled peers have?

The problem is equality, equal access, and freedom from discrimination. No matter if it's a grocery store, a gas station, a city playground, a sidewalk, a school, or a job. The solution starts with awareness.

Whether or not it's too hard depends on if it's worth the effort. To me, it is.

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