Sunday, March 26, 2017

Crashing a Public Women's Restroom in Disability Style

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We recently traveled with Noah, it's not easy.  In fact, although I'd like to say that perhaps we gain more skills on how to do it better each time, Noah throws us a new traveling curve ball because he likes to be a tad unpredictable. Just when I think I've found away his take off and landing sensory vomiting episodes with Motion Ease, a Vomit bag, and a bib to best protect his non-FAA approved Car seat (yes I'm a rule breaker for my child), from being covered in a sensory overload evidence, he'll do something he's never done before - just to keep us on our toes I'm sure.

I took Luke to the bathroom at the Orlando International Airport.  I couldn't find a family restroom the best that I tried for Noah.  I refuse to place him on a bathroom dirty floor to change him - I just can't do it.  I can't.  So I recline his wheelchair the best I can and it takes both his Dad and I to change him one lifts the bum, one switches out the old with the new, one holds him so he doesn't flop out, one pulls his pants up, one hollers to Luke to just stand there and not touch anything that isn't sanitary.... you get the idea.  It's not easy, nor a picnic or fun.  And it could be so much better if proper Changing Spaces were in place that allowed us to make this easier and change Noah with some dignity.  But until the world catches up with our needs we're doing the best we can.

While taking Luke to the bathroom I realized that the handicapped stall in the women's restroom was unusually awesome and rather perfect for our changing needs for Noah.  It was huge.  And by huge I mean had it's own personal sink in it, room to turn around, it probably could have accommodated two wheelchairs to be honest.  It would have made a decent family bathroom but instead was tucked away inside the women's public restroom.   I went back to Chris who was sitting at a Ruby Tuesday's table feeding Noah prior to our flight.  Told him I found a bathroom for Noah - but it was inside the women's restroom.
He looked at me like you're really going to attempt to change Noah all by yourself?  Until I gave him that look that was like "nope, buddy that's not what I had in mind."  Without me even saying a word, he's like "oh hell no, I can't go into a women's restroom."  I said, "we have to do this." 

He shook his head in disbelief of what I was proposing. I wanted him to just waltz in a public women's restroom.  He looked at me and said "are you trying to get me arrested, so we can't go home?"  Funny as that may have been (although I would have put up the bail money if needed), I was quite serious.  He was going in that bathroom and helping me change our 8 year old wheelchair bound child even if I had to push him the whole way into that stall.   No, wasn't an option. 

First I thought, well perhaps I should announce my husband's presence to all the ladies in there. But then I was like nope.  Advanced warning wasn't needed.  We're a family, he's not a bathroom threat to anyone.   Chris, walked behind me like a shrinking violet.  I kept telling him to come on already.  He walked like a sloth, dragging his feet in utter terror.   I was somewhat amused with his extreme discomfort about the situation.  And even more amused by the looks we received by other women in the bathroom.  I much didn't care.  I was standing my ground and marching into bathroom battle.  Some jaws wide open, some pretending to look away but then glancing my direction.  Little girls not even so much as thinking twice, because at young tender ages they haven't yet developed a sense of discrimination or dislike for differences yet.  Chris hustled into hiding into the large disability stall - he stood against the wall looking at me like he couldn't believe I was forcing him to do this.   I ushered Luke into the stall told him to stay in a corner with his hands clasped in in from of him and not to touch anything with germs while we worked on helping Noah.  Luke follows directions as if I put him through military school at age one.  I had no worries that he'd leave his corner germ-free post., which was great because I could place all my focus on changing Noah with the help of his Dad.

Noah's diaper change was a little bit messier than we had anticipated it would be, which always presents an extra layered challenge trying to do this while he remains tilted in a wheelchair.  It sucks really.  I won't play it up as anything less.  But the main goal is not to fumble our precious Noah onto the floor when we do this.  It took a bit longer to change him, but was really thankful for the sink inside the stall that certainly helped the situation.  Chris did his best to whisper as if was trying not to give away his location.  I laughed under my breath likely about the challenge of changing Noah in this way and having my husband backed against a tremendously uncomfortable situation.  If you can't laugh about it all, you'd lose your mind.  Laughter is important.  Never fail to laugh about the hard things.  I promise you it helps.

After Noah had been taken care of, and Luke was given permission to come out of his germ free corner, Chris looked at me for direction.  Part of me told him he should march out first just because I wanted to see everyone's reaction.  There isn't much like true shock value of a guy in a bathroom with his disabled child and family.  What fun right?  People need to see more of this - really they do.  They need to see how hard our reality is.  Why hide it from everyone?  Perhaps if I showed them enough things would get easier for us?  Or not -

But I took one for the team and just told him to follow me out.  The look in his eyes said could you please at least hurry me out?  It is honestly really sad that we've placed so much gender stigma on bathroom situations.   We all have to use one - and we all have different body parts.  So what?  I've used plenty of men's bathrooms at events and concerts back in the day when the women's bathroom was line was to eternity.  And the men were really great about it.  Wasn't there picking up a date (nor am I interested in looking at anything I shouldn't be)- I just had to pee really badly.   Will Noah's daddy ever get over the shyness? I doubt it.  Bless his heart he's just sweet in that way.  And cares a bit too much about what people think.  However, I have full faith in him that if I wasn't around he'd have the courage to go the distance for Noah and entering a women's bathroom if need be to get to the only and best changing location for Noah on his own.   He could do it, if the occasion required it.  He'd do anything for Noah, that much I know. 

That's why I chuckle whenever I see people have bathroom gender debates.  You all haven't a clue.  None, zip, nada.  Everyone wants to view things as black and white, and there are so many shades of grey in life.  We're so quick to judge, point a finger, and increase someone else's hardships and difficulties that we lack tolerance, patience, understanding and above all else kindness. 

Luckily for all the ladies that were present they didn't utter a word, although mind you I was ready and most certainly would have put anyone in their place that dared to question or say something about my husband entering a women's bathroom to help me with our severely disabled child.  I dared them to do so and shot back glances in the direction of all those that looked like they even might think about going there.  So the next time ladies that you see a guy in a bathroom - especially with a young child or one that is disabled.  Cut him a break, not all daddies are entering a bathroom because you think they're a predator.  Just calm down.  Do you bathroom business and move on. 

And for all of you that continue to remain uncomfortable with the idea that I'm now forcing Noah's daddy to enter women's restrooms if need be - then please fully support Changing Spaces worldwide to give us adequate changing space for Noah, so we don't have to make you feel uneasy about our situation.  Same with the dudes - if I think your bathroom area is equipped with what I need... I'm going in... wink wink. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Thursday, March 16, 2017

I Can Touch Myself

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For all of that clicked on this because you thought the title was naughty, I assure you this is a completely G-Rated Post.  Noah has been doing a lot of alternative therapies since he was thirteen months old.  We still have mixed some of his therapies with traditional therapies at times.  But Noah has always found more success and more contentment with what insurance companies deem "alternative therapies."  Also really known as therapies Medicaid refuses to pay for.   This of course throughout the years has contributed to the financial hardships of not just our family but all families like ours.   However, it's kind of like those credit card commercials you see on TV; Therapy $5,000, Gas to get to therapy $500, watching your child do something for the first time?  Priceless.

No, for real the feeling is quite breathtaking when it comes to witnessing your child do something that he or she could never do the day before especially years after they were physically supposed to be able to meet such a milestone.  We've been doing a therapy for a couple years called MNRI with Noah (The Masgutova Method of Neuro-Sensory-Motor Reflex Integration), which has hugely benefited Noah's life.   We added it to the line up of Acupuncture, Hippotherapy, Warm Water, ABM/Feldenkrais, Cranial Sacral, Conductive Education and the other long list of out of pocket therapies throughout the years for Noah.  And nope Medicaid doesn't touch any of it. 

It's been my dream to get Noah to the MNRI center in Florida for years, but financially I don't think we'll ever make it there.  Most camps run about 8K-9K a session and Noah would need go multiple times.  But we're so pleased with the progress he's made with his local MNRI practitioner.  Noah adores her - they are close friends which is great when Noah forms a bond with therapists that forms into a close friendship.  Noah's been having lots of reflex break through lately.  Alternative therapies are like that - it's like one day the wires in Noah's brain connect and re-wire themselves and suddenly something he couldn't do yesterday he is doing today.  The brain is an amazing thing.  And Noah's continues to learn and adapt ways around his global brain damage. 

It was like almost overnight and Noah went from not being able to get his hands to his face to being able to swipe and touch his face all the time.  This of course is posing new problems like him scratching the bridge of his nose and chin, and now that he is able to reach and touch his face he's more susceptible to germs if someone touches his hands and he then touches his face.  In fact, for the earlier this year, Noah has been battled a cold that started with him that he so kindly shared with the rest of the family.  My best guess is that we were doing interviews for a new speech therapist and someone physically touched him and transferred a germ to him (even though I have a hand washing policy upon entry) that is voided if a person decides to chew a finger nail or rub their nose after they wash their hands and then come in contact with Noah.  It really then defeats the purpose of my hand washing policy.

While I'm ecstatic that Noah can now touch his face, I'm of course a tad nervous about this new challenge.  People generally like to touch Noah's hands oddly enough when they do touch him.  I suppose it's natural instinct to touch a special needs child on the hands rather than patting them on the head like a pet or something.  Although really I wish that people recognized you should NEVER touch a special needs child without explicit permission and/or invitation from the parents.  In Noah's case germ risks combined with a severe sensory processing disorder does not make him a favorable candidate for unwanted touching. 

So in true mama bear style now that Noah can touch himself, I searched out little warning tags to plaster all over Noah's wheelchairs or adaptive equipment to serve as a do not touch the merchandise reminder.  I know people are likely to think I'm crazy.  And I'm more than okay with that.  It's my job to protect Noah in every way I can - including from any unwanted germ transfers.  It's not easy on him to be sick - this last time it required three doctor's visits and multiple pulse ox checks, and tons of medications.
I found these great signs on Etsy and Kind Sign Inc. that will put people on notice (or so I hope) to remind people touching Noah isn't a good idea.  Has it helped?  No not so much, since putting them on Noah's wheelchairs his legs have been rubbed, his head continues to be petted like he's a small puppy, and his hands picked up and caressed by strangers in parking lots.  And it happens so fast I can turn my back for a second to get something from under his wheelchair...  and the touching is already happening.  But maybe it's going to decrease the amount touchy business - I don't know that there is much more I can do.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.