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Tuesday, July 26, 2016

Angry at Autism

Since it's the summer, the Kiddo has a much different schedule. While he does attend an ESY (Extended School Year) aka "summer school" program, it's only four days a week and it's only for six weeks of the summer. Which leads to us have a lot of free time on our hands. If you are living the #TeamQuirky lifestyle this isn't the best idea to have gobs of unplanned for time in front of you and a Kiddo who thrives on structure.

So Mama Fry has to keep this boy busy. There are no lazy days of summer at French Fry Inc. As the years have gone on this gets both easier and harder to do.  Easier in the sense where I can say "Okay Kiddo, I have to hit the grocery store, post office, and pick up the dry cleaning. We're leaving at 10AM. You in?" and he will enthusiastically declare "YAAAAAASSSSSS!" like a drag queen who just found out Lady Gaga is working on a new album. He's just always game to do whatever and outings have gotten easier. Or I have just learned enough to make them work. I don't really know. I know enough not to question something if it's working.

But then they get harder as well because Mama Fry here gets cocky. I have a good couple of days with the Kiddo.  He's content and the behaviors are pretty chill and I start thinking BIG! Plus even though the summer goes by so quickly, some days feel like forever, ya know? I'd rather have some plans laid out and I don't want to always take him on errands.  I want to do fun stuff too.  There's also only so many kid's movies, beach days, swims in the pools, outings to the park or runs to the drive thru for "window fries" a gal can do.

What about New York City?

This is the idea I got in my head the other day.  I live at the Jersey Shore. Day trips into the city are easy enough to do. It would mean taking the train in and back. Hello? Did someone say "Train'?  That Polar Express movie watching Kiddo would already be down with this idea just based on the ride in and out of the city alone.

We could easily hop on one of those open air double decker tourist bus and go for a spin to see the sights. He's been on them before and he freaking loves them. They are right around Penn station. Getting on one would be cake.  Hop on and off and go somewhere for lunch.  Another thing that's gotten a bit easier. NYC is a city of hot dog carts on every corner. Feeding him wouldn't be an issue.

So what's the problem?  The flipping bathroom.

He's going to have to go but where? Usually my husband takes him. I, an adult female, cannot walk into a men's room with him. There is no way on God's green earth I am sending him into one ALONE. Oh HELLS NO. Not gonna happen. Twelve year old autistic kid with an intellectual disability and limited verbal skills. All the NOPES that ever NOPED!

So take him in with me to the women's room? Well, that's getting harder and harder to pull off.  For one reason, the Kiddo.  He can read restroom signs and he knows which one he's suppose to go into and what one he's not. Let me tell ya something, for a kid with limited verbal skills he let's his displeasure of being dragged in with his Mama be known. Loud and clear. The rules being THE RULES. There is no swaying his line of thinking.  I've been able to so far to plan some of our other outings around places where I know the bathrooms are single stall set ups, so sending him in isn't so scary.  Eventually I'm going to have to let him go into a big bathroom by himself. Just not planning on starting that at Penn Station in Manhattan which is where he is going to want to go right away after being on a train for a while.

I actually had a moment of "Okay, what guys do I know in the city that could meet us and walk the Kiddo into the men's room so he could go to the bathroom?" and that's when I realized that's probably gonna be hard to pull off.  Really, can you imagine getting that request? "Please come meet us so you can go watch my Kiddo go take a piss."  Yeah, not happening.

And this is when I get angry at autism. Like stupidly, irrationally angry at autism. I wanted to be able to surprise my Kiddo with "Forget errands. Let's go to NYC!" and have him think "My Mom ROCKS!". Instead, I'm stuck on where my son can pee because I worried for his safety. There are just too many risk factors of what could happen to him or what he could see that I cannot take that chance.  It frustrates me to no end that so much of our lives just seems to be ten times harder than most families.  I can whip up invites to a pity party for myself really quickly.  Those parties suck. They don't even give you goodie bags.

I can get very angry at autism.  I'm not proud of that but that's where I am sometimes in my life.  The only thing I can do is try to channel that anger into doing something productive with it.

Like looking up what sit down restaurants are in Penn Station that I could take the Kiddo for a side of fries AND using their stand alone bathroom which I could stand watch over. ;-) Now that could work!

Furrowing your brows just gives your wrinkles and I'd rather earn them by laughing. 

17 comments:

  1. I used to go through the same bathroom issue with a physically and intellectually disabled man I worked with. I finally decided that I would have to go in the men's room with him. A little awkward but I made it work. We sometimes had to wait a bit until everyone was finished and I would loudly announce that I was there if anyone came in. Go Mom, do what you need to do.

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  2. This is were maybe bringing someone who can partner with him that is his age or a teenage boy to typical companion him during these trips? A little more complicated but still would help with the idea of a trip in the city to drop daily things aside..lets face it, nothing is spontaneous with our kiddos.

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  3. Sometimes it's hard when we have all these limitations when all we want to do is have some fun with our kids. As a mother of four(twin girls 23, boy 21 and boy 16) with both my boys autistic and the older one severely I understand the wanting a mom rocks moment. As my older son got older he became violent and aggressive, constantly punching me or his younger brother. At 6'4" and 200lbs he's hard to manage. We had to put him in a group home that is six hours away because we live in a small town in the mountains and don't have any resources here. When he visits I look forward to going out to events with him, taking him to movies, historical sites in our area and trains. The last year has been almost impossible for us to do that. He's started very violent , aggressive behaviors in public which had not happened before. In movie theaters screaming obscenities and threats to attack me or others so after spending a fortune on tickets we have to leave before movie even started. At other events he's ran from us trying purposefully to run out into traffic cause he loves the response of us fearing for his life. He's like an active land mine, you never know when you'll step on it and it will explode. It's horrible and heart breaking that autism took any fun we could have with him away. We barely see I'm and when we do we cant even take him to Walmart for fear he will explode. I'm not trying to be so negative or make you feel even worse. I've learned to be thankful for when those moments of family fun actually do happen. I'm an eternal optimist and keep taking him out for fun trips knowing what could happen but praying this time it won't!

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  4. This is something I think about all the time. right now my son is still young enough to go with me to the bathroom if we are out somewhere but once he gets older I don't know what I am going to do. thanks for posting for we know we are not alone in the struggle of daily life.

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  5. Just like there are bathroom laws in some states for transsexuals, perhaps there should also be bathroom laws for people with disabilities. I don't care anymore what people think. I still take my son to the ladies room with me. It's for his own safety. So far, I have never had anyone make any nasty comments about it. I think most women, especially mothers, understand.

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  6. Years ago at the Philadelphia zoo, I saw a mom standing outside the men's bathroom door. She was speaking loudly and instructing someone in the bathroom step by step what to do in the bathroom. She saying things like, "now wash your hands", "use the soap to wash your hands", "turn on the water", "dry your hands with the hand dryer", etc. Then I saw a young man with Downs Syndrome walk out of the men's bathroom. It broke my heart that his mom had to yell out the instructions from outside of the bathroom door. We really need better bathroom laws for people with disabilities. If we can accommodate for transsexuals, we should be able to accomodate for people with disabilities. It's only fair.

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  7. That is the most difficult part of going anywhere - just me and DC. I pushed bringing him into the ladies room as long as I possibly could - at 25, I don't think that would go over very well. It's bad enough when he has to go and I am the crazy mother that keeps yelling into the men's room, but what do I do when I have to go?

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    Replies
    1. (I hit publish by accident) What do I do when it's me that has to go? Leave him outside the restroom door?

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  8. We NEED there to be a standard in public places like trains/stations that there is a "family" bathroom! This is exactly why! I feel you, Mama Fry, I do.

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  9. This is why I love Starbucks. Even when they're marked bathrooms, it's a *bathroom* with just one commode, and I (or the wife) can just simply take the kid in to do their business, and deal with the staring when we come out.

    And Starbucks is practically everywhere (and therefore, an excuse for me to buy more cooooofffeeee...)

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  10. Mama Fry, maybe this links will help?

    http://www.findfamilyrestroom.com/findrestroom.php?rrsearch=bystate&rrstate=NY

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  11. Aha, you had it all figured out by the time you got to the end of your post! I squash into a ladies cubicle with my son.... he is age 17 and is 6 foot! I do get some odd looks! :)
    Have a great time when you take the trip.

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  12. Possibly a dumb question, but in Australia most places have to provide a mens, a womens and a ambulant / disabled / family bathroom - any decent sized establishment and any public facility basically will have those three options - most supermarkets will have both an ambulant / disabled facility and a separate family bathroom and maybe even a separate nursing / baby change / parenting room. Train stations would have at least a mens room + ladies room + ambulant facility.

    Does that not happen in America?

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    1. Not in America. :( some places have them and some don't.

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    2. Wow.
      I really sometimes wonder about America. I don't know why I'm shocked to hear that you don't have a planning scheme / building regulations that ensures you have bathrooms that work for all types of families and people. That just makes me scratch my head as an Australian who takes that stuff absolutely for granted. Here, if you build a building with more than one storey (i.e. with even one storey "upstairs") and its a public building - restaurant, bed and breakfast, sports centre or whatever - you have to put a lift in and have disabled access from the street + disabled amenities.
      I just feel so sorry for families who can't get out because of this basic issue - that doesn't happen here and its shocking to read.

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  13. I'm so glad I found your blog...i actually found it via an entry from 2012 on Autism and colds/flu. My daughter (not formally diagnosed as of yet - right now just given soft recommendation of sensory delays) was up most of the night with a head cold. As in up, I mean playing and playing - I kept waiting for the crash and burn but she amps up so much that it just never happens. Blah. Before the playing though, you bet there was lots of screeching and writhing at Mom trying to help get boogers out. We are currently getting ready to move to our own four walls (thank goodness) but share walls on BOTH sides. I don't know how blue and red lights haven't shown up because of her random fits of howling due to boogers or hair washing :( It's so hard because I literally have to do a loud running narrative of what I'm doing with her (washing your hair, wiping your nose, helping you poop... Etc) so that people won't call the police. I'm so tired!!! :(
    But thank you for this blog. It's super encouraging. I can't wait to go back and read more!!!

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  14. I'm so glad I found your blog...i actually found it via an entry from 2012 on Autism and colds/flu. My daughter (not formally diagnosed as of yet - right now just given soft recommendation of sensory delays) was up most of the night with a head cold. As in up, I mean playing and playing - I kept waiting for the crash and burn but she amps up so much that it just never happens. Blah. Before the playing though, you bet there was lots of screeching and writhing at Mom trying to help get boogers out. We are currently getting ready to move to our own four walls (thank goodness) but share walls on BOTH sides. I don't know how blue and red lights haven't shown up because of her random fits of howling due to boogers or hair washing :( It's so hard because I literally have to do a loud running narrative of what I'm doing with her (washing your hair, wiping your nose, helping you poop... Etc) so that people won't call the police. I'm so tired!!! :(
    But thank you for this blog. It's super encouraging. I can't wait to go back and read more!!!

    ReplyDelete