Tuesday, March 13, 2012

On invisible special needs & compassion

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.

How others see us is not always how we feel.

The last time my mom visited, she had a disquieting experience in the airport restroom. She went into the handicapped stall and was graced with a running commentary from a woman outside the stall, a mama with a tot in a stroller, about how rude it was that my mom had "stolen" the handicapped stall from her.


My mother was diagnosed with multiple sclerosis thirty-some years ago, in her early thirties. MS, being a degenerative nerve disease, can present in many different ways — anywhere nerves are found. So, you know, pretty much anywhere in the body. Typical symptoms, especially thirty years out, include problems with walking (my mom doesn't use any walking assistance such as a cane or wheelchair, but she has trouble feeling her feet and her muscles don't always coordinate as she walks), difficulty distinguishing or feeling sensations (my mom says she feels like she's wearing a wet suit all the time, only the wet suit is her skin), problems with bladder and bowel function, vision problems, memory issues, and many other effects. It's a difficult disease. My mother also has vision problems unrelated to her MS (multiple eye surgeries), which makes dealing with her MS symptoms that much harder.

But my mom is stoic. Maybe it's the stubborn Scandinavian in her, but she refuses to use any help she can get away without. She never signals her disability, hates to talk about it, would be annoyed that I'm writing about it, and never plays the MS card.

So what that mama with the stroller saw was an apparently able-bodied, middle-aged woman walking on her own two legs into the handicapped stall, locking out the stroller-bound harpy.

My mom was embarrassed, agitated, and feeling a lot of pressure to hurry it up in there as the woman stridently proclaimed to her child and the whole restroom what a terrible woman my mother was to have taken a stall that was clearly not meant for her. Only, it was meant for her. My mom needs the extra space and the bar. That woman was wrong wrong wrong.

It's so easy for us to judge people to have lesser problems than we do. After all, we know our problems. And, believe me, I can put myself easily into Stroller Mama's shoes. I've been there, with a stroller and three shopping bags and a diaper bag, or one preschooler and one baby in a carrier, or a pee-dancing toddler or an antsy ECing baby. I dislike that so many public restrooms put the changing table in the handicapped stall, and I don't know what loser designed the cramped spaces of most of the regular stalls (where you have to stand on the toilet to get the door closed past those stupid toilet paper dispensers), although I get that there are a lot of design constraints when it comes to limited spaces. It can be harder to see what other people's problems may be when they're not advertising them, and it can be harder still to acknowledge that the problems you don't see might trump your own.

I know this is a widespread problem with so-called invisible disabilities. I've heard self-styled vigilantes sometimes heckling or reporting people parking in handicapped spaces, assuming that a lack of cane or wheelchair means they don't need the spot or have stolen it from someone else.

I knew someone who had cystic fibrosis, a congenital respiratory disease. He had it bad, and succumbed at the age of twenty-four. For his last few years, he had a handicapped placard, the kind that slipped onto the rearview mirror. To get it, he and his doctor had to apply to whatever department handles those permits, and they had to renew it every year, which was why he wasn't granted a handicapped plate instead. The permit office is very strict about who gets permission to park in those spaces, and since this was a respiratory disease where the severity could ebb and flow, he had to keep proving he was sick enough to need one. I have no doubt that some people abuse the handicapped parking spots, but I don't think it's easy to abuse the permitting system itself.

People watching him get out of his car in a handicapped spot would have seen a thin, apparently able-bodied young man in his early twenties walking unaided into the store. They wouldn't have seen handicapped plates, and they might have wondered if he'd nabbed the placard from a deserving relative. They wouldn't have realized that having that spot close to the door meant the difference between having the breath to shop and having to turn around and go back home.

I think of this when I think of parents who have children with special needs that aren't obvious. Those families who are dealing with learning disabilities, developmental delays, emotional issues, and more — observers might see just a kid "acting out" or parents who aren't in control of the situation. It's so easy to assume we know what a family is going through, and that we would do a better job in that place. A mother suffering through postpartum depression or an anxiety disorder likely looks no different from someone who has it all together. Many illnesses leave no mark on the outside of the struggle it takes just to get through the day. We don't know unless we ask and the person shares, and even then, we don't know the fullness of what anyone else is going through. I know I want to have more compassion and assume the best from people. Heck, maybe even Stroller Lady has some sort of disability that causes her to be abominably rude. Ok, maybe I'm not quite ready to have compassion on her.

But it helps me to remember this quote:

Be kind, for everyone you meet is fighting a hard battle.

It's not up to us to diagnose everyone we meet. It's only up to us to chill, to show a little compassion, to assume the best … and to let the rest go.

What do you wish people knew about your hard battle? Have you ever played the vigilante and regretted it? I won't judge. As long as you weren't that Stroller Woman making my mom all flustered.

Photo Credit: Sienna Blakney / Flickr

Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be live and updated by afternoon March 13 with all the carnival links.)

  • What is 'wrong' with you' The challenge of raising a spirited child — Tara at MUMmedia discusses the challenges of raising a child who is 'more' intense, stubborn, and strong willed than your average child.
  • Tips for Parenting a Child With Special Medical Needs — Jorje of Momma Jorje shares her shortlist of tips she's learned in parenting a newborn with special medical needs in a guest post at Becoming Crunchy.
  • Parenting the Perfectionist Child — Mandy at Living Peacefully with Children discusses that as parents of gifted children, we are in the unique position to help them develop the positive aspects of their perfectionism.
  • Montessori-Inspired Special Needs Support — Deb Chitwood at Living Montessori Now gives a list of websites and blogs with Montessori-inspired special-needs information and activities.
  • Accommodating Others' Food Allergies — Ever wonder how to handle another family's food allergies or whether you should just skip the play date altogether? At Code Name: Mama, Dionna's friend Kellie (whose family has a host of allergies) shares how grateful she is when friends welcome them, as well as a list of easy snacks you can consider.
  • Only make promises you can keep — Growing up the child of a parent with a chronic illness left a lasting impact on Laura of A Pug in the Kitchen and what she is willing to promise for the future.
  • A Mom and Her Son — Jen at Our Muddy Boots was fortunate to work with a wonderful family for several summers, seeing the mother of this autistic son be his advocate, but not in the ways she thought.
  • Guest Post from Maya at Musings of A Marfan Mom — Zoie at TouchstoneZ is honored to share a guest post from Maya, who writes about effective tools she has found as a parent of two very special boys.
  • You Don't Have to Be a Rock — Rachael at The Variegated Life finds steadiness in allowing herself to cry.
  • When Special Needs Looks "Normal" — Amy at Anktangle writes about her experience with mothering a son who has Sensory Processing Disorder. She offers some tips (for strangers, friends, and loved ones) on how to best support a family dealing with this particular neurological challenge.
  • Special Needs: Limitation or Liberation? — Melissa of White Noise describes the beauty in children with special needs.
  • How I Learned It'll Be Okay — Ashley at Domestic Chaos reflects on what she learned while nannying for a boy with verbal delays.
  • Attachment Parenting and Depression — Shannon at The Artful Mama discusses how attachment parenting has helped her get a clearer image of herself as a parent and of her depression.
  • On invisible special needs & compassion — Lauren at Hobo Mama points out that even if we can't see a special need, it doesn't mean it's not there.
  • Thoughts on Parenting Twins — Kristin at Intrepid Murmurings shares her approach to parenting twins.
  • ABCs of Breastfeeding in the NICU — Jona at Breastfeeding Twins offers tips for establishing breastfeeding in the alphabet soup of the NICU.
  • Life With Michael - A Mother's Experience of Life With Aspergers Disorder — At Diary of a First Child, Luschka's sister-in-law Nicky shares her experience as mother to a child on the Autism Spectrum. It is filled with a mother's love and devotion to her child as an individual, not a label.
  • Raised by a Special Needs MomMomma Jorje shares what it was like growing up as the daughter of a mother with a handicap.
  • Becoming a Special Needs Mom — Ellen at These Broken Vases shares about becoming the mother of a child with Down syndrome
  • She Said It Was "Vital" — Alicia of Lactation Narration (and My Baby Sweets) discusses the conflict she felt when trying to decide whether therapy was necessary for her daughter.


Julie said...

This is an excellent post!!! We have a child with very obvious disabilities but when she was a baby, they were not so obvious. I recall waiting to see a doctor with her and she was arching. When she arches back she simultaneously opens her mouth (she has cp). It can resemble yawning. Anyway, this woman says loudly to my baby: "Oh, are you tired? Look how tired you are. your mommy needs to give you a nap!" I looked at my daughter and said, "Tell the nice lady that you are not yawning but that you have a severe brain injury and can't help opening your mouth." That shut her up in a heartbeat! Your post was very well said and a great reminder to all of us.

Alicia @LactationNarration said...

We are on the announcement lists for local events for children with disabilities. It's probably silly, but I often hesitate to go. Even though I know that we wouldn't be on the list if we didn't "qualify", I sometimes wonder if my kid is disabled "enough" to take advantage of these programs. Her delays are not always obvious to others, and I worry that people will think we don't belong there.

kadiera said...

One of the hardest things we've dealt with is the dirty looks as we take that handicapped parking spot and dig a mainstream stroller out of the car...

...because our little ones (Acorn before and Leaf now) also had a ventilator and oxygen and suction and a bag full of emergency supplies. And insurance only pays for a wheel chair every so often, and most won't pay for infants at all, because they're expected to be in strollers anyway.

Unknown said...

Thanks for writing this, Lauren. I struggle with this kind of judgment with the difficulties we have with Daniel, and it does nothing but make our life harder. I'm sure I still have plenty of room to grow in this way, so thank you for the reminder.

Unknown said...

Thanks for the reminder that not all disabilities are obvious; it's not something that I often give any mind to. And I'm so sorry some bitch made your mother feel bad.

I've never done the vigilante move, but I did work with a woman who used her grandmother's handicapped hanger to park in the handicapped spots when she came to work. It used to drive me crazy that she would take this spot for four or five hours three days a week (we only had two by the food court), but I was worried if we said anything it might cost her grandmother the hanger.

Ellen Stumbo said...

What a thoughtful and well written post. Yes, people judge everywhere! I have gotten the stares and shaking of the head by other people. I admit sometimes I give in and pull out the wheelchair or walker just so that people see that we have a reason to be on that spot. It turns out being more work than if I had just carried my daughter inside the store and plopped her on the cart.

On the other hand, I do admit sometimes I see what seem like fully abled people taking handicapped spots. I try to remind myself I simply don't know.

Again, thank you for this great post!

Laura said...

Ah... the bathroom stall vigilantes. By the time my mother passed away, she had almost completely lost control of her bowels and there were a few incidents when my father actually called me to come to a store to help her because he couldn't. As far as I am concerned, there need to be more family bathrooms so that no matter what your handicap is, you never have to spend 20 minutes in one of those horrible stalls waiting for your daughter to come help you. Regardless of your handicap, everyone deserves space... even if it's "just" the bathroom.

Dionna @ Code Name: Mama said...

Wow - awesome post, it really made me think! I've definitely been guilty of saying something about an apparently able-bodied person parking in a handicapped spot. Thank you for opening my eyes (even though I've known people with invisible disabilities - I'm ashamed of myself)!

Lindsay said...

As a kid, I thought it was against the rules to use the handicapped stall unless you were handicapped-somehow my mom always used normal stalls with us! (probably helps that she's like 5'1") I remember being amazed to find out anyone could use them, it was just most polite to use other stalls so that you leave the handicapped stalls available to those who truly need them. It is ridiculous how tiny *normal* bathroom stalls are though. Sometimes I feel claustrophic and bump into the TP dispenser, and I'm only 5'2".

Lindsay said...

As a kid, I thought it was against the rules to use the handicapped stall unless you were handicapped-somehow my mom always used normal stalls with us! (probably helps that she's like 5'1") I remember being amazed to find out anyone could use them, it was just most polite to use other stalls so that you leave the handicapped stalls available to those who truly need them. It is ridiculous how tiny *normal* bathroom stalls are though. Sometimes I feel claustrophic and bump into the TP dispenser, and I'm only 5'2".

Prof. Hannah said...

I think that it is amazing that people expect all disabilities to be visually present. I agree with the need for family bathrooms and removing the changing table from the handicap stalls.

As far as the placards, in Dayton, OH, the police will routinely check the number on the placard with the car's license plate to verify it "belongs."

mythreewonders said...

I love this post! I have never been a vigilante, and I hope that I have never even felt that kind of judgment toward someone else. We never know the struggles that someone else is dealing with.

I have certainly felt my share of judgment recently. I have graduated to a cane for quick walks around my home, but if I actually have to go shopping I have to use one of those scooters. It floors me the looks and disregard I have experienced. It has definitely changed my perspective for life.

Sylvia said...

Great take on the topic! It is so true, it's hard to spot everyone else's internal battle and life struggles. Even when it is visible, it's still hard to know whose troubles trump whose. Discomfort or
exploding bladder? Slow moving or bleeding? A line in a Bob Marley song says it well: "every man thinks his burden is the heaviest."

Momma Jorje said...

Wow! I am so glad I popped by here to check out your carnival post! As you know, I can relate to feeling... perhaps defensive about your mother.

I remember many bathroom trips when I was a kid. Often times back then there WAS no handicap stall. Even when there was, the rail placement was useless. I often had to help my mother get up off the toilet.

It is so easy to judge people on anything, really. We saw a woman at the store yell at one of her kids to please just shut up for 5 minutes (or something to that effect). On another day, I would likely have knee-jerk been appalled and judgmental. But we'd just been through our own 2yo being a PITA in the store ourselves. We both felt we totally understood this woman's plight.

Katie said...

I am a speech pathologist, and I work with children with special needs. Then, last year my then two year old was diagnosed with an often invisible disease...Juvenile Arthritis. People always say "She looks so great!" But sadly, that is because we have to give her injections of chemo medications to suppress her overactive immune system so it will stop attacking her joints (JA is an autoimmune disease). I deal with people everyday that are CLUELESS on what my daughter has been thru and so now we work hard on educating others.

Thank you so much for this post! It is EXCELLENT! So glad I stopped in from Living Montessori Now.

Rachel @ Lautaret Bohemiet said...

Wonderful post, Lauren. If that had been my mom, yeah, I'd be really ticked. What you said is so true about giving people the benefit of the doubt. And you know what? Even if we do run into one of the creeps who is actually taking advantage? Our lives are still easier and more centered if we let it go. We don't all have to waste our lives correcting and educating and chastising one another who do what we don't like. The gal in the bathroom could have used that lesson. Big time.

And something that always confuses me is that handicap restrooms aren't JUST for those who are handicapped. They are handicapped ACCESSIBLE, meaning, they are big enough and have the extra room, bars, etc. to make it easier for handicapped people. Anyone is allowed to use them if they need extra space.

I used to have really serious hip problems (mostly fixed now) and would need to use handicapped stalls so I could use the bar. I often got weird looks when I came out. I had a friend who had a colostomy bag and she needed the space to take care of it and she would get weird looks too. People assume that you aren't in need of special care if you aren't in a wheelchair, and that's just plain false.

I really dug this post. So sorry for your mama. I feel so bad for her having to rush and feel so judged. :(

Related Posts with Thumbnails