Special (Needs) Delivery!

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Credit: iStock.com/Meilun

My daughter and I enjoy going out to eat from time-to-time. There are times, too, when it’s much more convenient or comfortable to stay at home and order food to be delivered. We like pizza, Chinese and there’s a local deli that’s fabulous and offers delivery service. However, after several experiences with delivery drivers over the past year, something’s been swirling around in my busy brain so I’ve decided to write about it. I’m hoping it’s a chance to create an open-dialogue with businesses that offer delivery services about how to make accommodations for people with disabilities. It is often a company’s policy to prohibit their drivers from entering a home while making their deliveries. Having worked for a national pizza-chain, I understand that this is for the drivers’ safety. That being said, I wonder if the policy must be so black-and-white or if a gray area exists?

I’ve lived at my current address for several years and am a ‘regular’ customer of the eateries around my neighborhood. When ordering online, I write on my ticket “Disabled – may need help bringing food inside. Thank you!” When I call in an order, I ask that a note be made using nearly that exact wording. Yet, upon arrival with my food, I’ve had drivers tell me they can’t come in; it’s against the rules. Now, please picture me opening the door either using my cane with a wide foot-base or my power chair and perhaps you’ll see the gray area. I’m obviously not a threat to them and my appearance matches the comment on my ticket. Because of my balance issues, I’m only able to carry one thing into the kitchen at a time. This can take a couple of minutes because we usually have more than one box or we’ve also ordered drinks. Twice, I’ve had drivers tell me they’re “in a hurry, ma’am” or “have other deliveries waiting.” THAT’S a tad irritating because I’ve asked for help, it’s been declined so I’m doing the best I can do.

Let me make it clear that I’m not asking for special privileges due to my disability. I’m asking that the same accommodations that are made when I’m dining in a particular food establishment be made when I’m ordering in from that same business. I also understand that rules are rules yet I’m arguing that there are circumstances in life which can alter the necessity or validity of rules.

I’d like to make a suggestion to businesses that offer delivery services: Please notice the gray areas. There’s typically a section called “Special Instructions” customers can fill out when placing online orders – please make the necessary modifications or stretch the rules a bit in order to meet the needs of your customers with special needs. Just as the ADA grants those of us with disabilities the right to utilize and enjoy your restaurant while dining-in, please grant us the ability to do likewise when you’re bringing your services into our homes.

 

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Within Reach…

What do we do when neither she nor I can reach something?? Work together because everything is always within reach when love stretches the possibilities! The only thing that’ll hold us back is US! We make a great team!

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A Party Invitation Also Invites a Change in Perspective

Typically, when my daughter receives an invitation to a party, I’m excited. I’m thrilled for her and look forward to having fun together while celebrating a special occasion, usually a birthday. Yet a birthday invitation came for a slightly older friend who was having her party at the skating rink. Now, there are several physical activities I miss doing since becoming disabled – water skiing, hiking and roller skating being a few. And there are times I feel guilty about my lack of ability to instruct my daughter in not only these but other activities (hula-hooping, jumping rope, etc.). Before receiving the skating party invite, I would’ve told you that I would love to take my daughter to the roller rink but I quickly found this to be untruthful when faced with a reason to do so.

Seeing the invitation, the words “Roller Skating Rink” kept jumping out at me as if mocking me for the inability to participate, to show my daughter how to skate, to enjoy this activity with her. At least, that was MY initial perception. I knew that I could get on the rink with her in my power chair if the building had a portable ramp but was wrapped up in anxiety over being stared at and put on display. I worried about my little girl not enjoying herself because of people staring, pointing, etc. I didn’t want to go and be the object of discussion; I just wanted to party at the rink with my kid.

I was explaining all of my worries and stress to a dear friend who listened patiently before saying, “You know, Lylly. If anyone does stare, perhaps it’ll be kids who’ll look at your daughter with longing, wishing their parents were on the rink with them. Or if adults stare, maybe it’ll be because you’re out there with your daughter instead of sitting on the sidelines observing.” BAM! I hadn’t considered THAT at all!

The day of the party, after acquiring skates for my daughter, I asked to speak to the manager and he put out the portable ramp. She held on to the back of my power chair and we went around slowly so she could adjust to the feel of being on skates. Her little friend, the birthday girl herself(!), wanted to hang on as well and so the three of us went around and around. We had such a great time!! I forgot all about the other people in the rink and was delighted to be out there with my little one and her friend! The few times I looked at anyone, they were either smiling as we passed them or obviously into their conversations and not paying us a bit of attention.

When I got the invitation, I allowed myself to forget that this life is our normal. Being stared at is normal at times to the point that we don’t often even notice it (and I tend to notice it more than my 5-year-old anyway!). I almost worried myself silly and if my friend hadn’t helped me gain a new perspective, I would’ve shown up at the party feeling stressed instead of ready to take on the rink! It doesn’t matter HOW I spend time with my daughter – it matters THAT I spend time with her! And we usually have a blast!! Just as we did at the skating rink! In fact, it’s on our summer to-do list as a place to return and enjoy one another’s company!

 

Product Review – EazyHold

EazyHold the Universal Cuff Grip Assist has been a very helpful addition to my treasure trove of modifications. I came across EazyHold on a social media site, where the creators were holding a give-away contest. I was one of the winners and my adult pack of EazyHolds arrived shortly thereafter.

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The package contains 5 different sizes of the Grip Assist, a company business card and a short description of the product along with ideas of ways to use EazyHold

EazyHold comes in 5 different sizes and attaches to a wide range of household items. Once fitted to an item, such as an eating utensil, the user inserts their hand into the grip and can then hold onto the utensil without having to grasp the item at all during use. It’s great for people with limited to no ability to grip things as well as for people like me, who can’t hold onto certain things for a long length of time.

 

There are seemingly endless items of daily use with which an EazyHold can be attached. The different sizes come with varying degrees of length and flexibility. The largest one even fits onto my home phone handset. I’ve currently got the smallest EazyHold attached to a pen at my desk. This product, of which a patent is still pending, has allowed me to use my hairbrush and toothbrush without experiencing pain in my hands and fingers; lessened the probability of weakness or joints ‘locking up’ while I use certain things around the house; and has decreased the risk of me dropping things. I highly recommend it!!

I can also tell you how nice the inventors of EazyHold are. They have contacted me a few times by email and have encouraged me to stay in touch with them. They seem to truly care that their invention is making a positive difference in the lives of its users. I’ve been very impressed with their friendliness and concern!

 

If you have trouble gripping things or tend to drop things while you’re using them, I’d strongly suggest you get in touch with EazyHold!! And, if you’re the parent or caregiver of a child with grip difficulty, you’ll be happy to know that EazyHold also offers children’s packs!

 

You can find EazyHold at their website: eazyhold.com

They are also on FaceBook: facebook.com/eazyhold

Why Play Dates Make Me Nervous…

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My daughter is five and has quite the social life! She’s made many friends from various facets of her life and my life combined – school, church, sports and recovery meetings. She’s the type of child who writes an invite list to her birthday party that’s longer than her Christmas wishlist. Needless to say, she is asked to join friends for play dates on a pretty regular basis.

This is where Mommy becomes more of a detective than parent. This is when I bust out with my list of questions for the parent who’s house I’ve never been to. I have to consider everything about the structure of their home and it’s accessibility to me before I can even decide if we’re able to go or not. Are there stairs leading into their home? If so, are there hand rails? Is the house all on one level? Are there carpets? Rugs? Toys or clutter of any kind in the middle of the floors that I’d need to try to navigate around? Is there an animal that might jump on me, causing me to lose balance? Or could that animal be so small and fidgety that I trip over them or can’t process all their movements in order to walk around it? What’s the bathroom like? Is there somewhere I can hold onto while in the restroom?

If you think this list of questions is long, think also of how I feel asking all of them: For starters, I never truly trust the answers that are given. I may trust the person completely in every other way, but able-bodied people do not have to think like I do. I myself never thought this way until I became disabled, so I surely can’t expect others around me to understand my needs immediately. I get nervous that something’s being left out: that small step up into the foyer; those 2 tiny stairs up the sidewalk that the person forgot to mention and oh, there’s no railing there either; the fact that the bathroom is on the second floor. I become concerned my daughter will be so excited the day of her play date yet when we arrive at her friend’s house, there will be some barrier preventing me from entering the home and we’ll have to either move to our house (which is way less exciting because other kids’ toys are always the most fun to play with!) or reschedule for another time and decide where to meet that’s accessible for me. And, there have been those instances where we’ve not made it into the house, even though I asked the litany of questions. I also feel guilty and can’t even pinpoint why – some of it is because I wish that we could just go like other families do; I wish I could be a ‘normal’ mom for my little girl. I have guilt when we must meet at our house, knowing my daughter enjoys playing with toys that aren’t hers. Yes, kids often bring toys from home to share, but it would be nice if my child could get out of our home more.

I feel like I’m interrogating the other parent; as if I’m making sure they have the “right” kind of home. I worry they’ll be insulted by all my questions – here they are, treating me like any other mother (which I deserve to be treated as, by the way) but I’m asking them tons of structural questions and focusing on my differences. I feel like it may seem I’m making a big deal out of a simple play date – “Wanna come over and play?” It’s a ‘yes’ or ‘no’ question! Not an opportunity to ask for the blueprints of the person’s house!! But, it’s also what I must do in order to know what my answer will be. There’s a small part of me inside that whispers quietly, “This is okay. Don’t feel guilty. Don’t stress out. God didn’t make a mistake in making you nor making you a mom.”

That wee small part of me also insists that it’s just a play date. The important part isn’t WHERE the playing occurs but the HOW (with enjoyment and happiness) and WHY (because my daughter is a wonderful, funny, compassionate friend) and also that it IS happening. When she’s twenty, I’ll ask her if she remembers having play dates with friends – I bet her answer will be along the lines of “Oh, yes! I had lots!” instead of “Yeah, but they were always at my house.” She’s got the best attitude about everything… even though her mom’s attitude can be saturated with worry, anxiety and guilt! Guess that’s just another thing that proves I’m like any other mama!

When my Limited Body Was No Match for the Limitless Love of my Daughter

My daughter is only allowed to watch a small number of television shows (yes, I am one of those parents). One of her favorite shows is Paw Patrol; I don’t use the word favorite lightly – she owns Paw Patrol dolls, pajamas, figurines, vehicles, stickers and don’t forget the light-up tennis shoes!! Nearly 4 months ago, I saw an advertisement stating that Paw Patrol Live! was coming to our city for the first time ever. I jumped on the chance to buy tickets but was faced with a decision: I usually use my power chair in public and especially at big events like this; it’s safer for me and ensures that I’m comfortable during the show but also don’t suffer pain & fatigue afterwards. However, this particular theater only has wheelchair seating in the very back – WAAAAAY back. Should I get tickets in the orchestra section where we’d be close to the stage and have a great view? Or should I get seats in the wheelchair section like I normally do? It seemed like a difficult decision to make… for about 2 seconds. I wasn’t going to Paw Patrol Live! for me – I was going so my daughter could be filled with amazement, joy, excitement and so that I could witness these feelings as they melded across her face. Yep, orchestra section it was!! Besides, I’d just ordered a sturdier, safer cane and was still walking pretty well for the most part. Some physical pain & discomfort were a small price to pay in order to see my daughter enjoy the show up close. I thought, 4 months ago, “I can do this! She’s worth it!”

Did I mention that was 4 months ago? Four long months in which my body regressed further in unexpected haste. When the day of the show came, I was walking very little, even at home. The only place I don’t take my chair to at all is a meeting house because I’ve yet to measure the doorway to make sure it will fit. I hadn’t realized I’d be this further into my illness & disability when I purchased the tickets. I’d felt so sure of myself then; when showtime came, I was much less confident.

Tickets in hand, excitement in our hearts, smiles on our faces, we went to the theater. My mother drove us so I didn’t have to deal with parking. We walked into the lobby where there were NO seats available! Not that people were sitting in them – the lobby was simply void of benches or rest areas!! I stood with my daughter in line to enter the theater and gave myself an internal pep talk, trying to feel capable of the physical task before me. When we got into the theater, I realized I’d gotten us FANTASTIC seats!!! But fantastic seats were more than halfway down the section and in the middle of the row – go mom! My sweet little girl waited so patiently as I made my way down the steps to our row, urging me to “go slow,” “don’t let go of the railing” and to “be careful.” I made it!! Then we awkwardly walked to our seats (well, she walked a lot less awkwardly than I did; I took out several adult feet and some small toes with the tips of my foot base!).

The show was AMAZING (and I strongly urge families with young children to see it)!!! Our seats were INCREDIBLE!!! The joy and awe on my little one’s face was worth every step cautiously taken!!! We had a BLAST!!! 

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Afterwards, I made it painstakingly up the steps, back out into the lobby to wait in a line for slightly overpriced merchandise (because we needed one more Paw Patrol doll, of course!!) and then waited on my feet for nearly 15 minutes before my mom pulled up to whisk us away. My lower body literally felt like it was on fire; I ached like I hadn’t in a long time; my toes & feet were numb but tingling painfully yet we had the time of our lives and inside, I couldn’t have felt better!! I don’t know if I’ll be able to do something like that for my daughter again and if so, for how long. But it was done the other day and I’ve cried while thanking God for the ability to walk, stand and go up & down stairs even though it hurt and was hard. I know one day, I wont be able to do any of that any longer so I’m grateful for every movement I CAN make and every ability I still possess.

My ability to love completely outweighed my inability to move like I once did – how can I not be thankful for that?!?!

How Being Turned Away by Other Moms in Wheelchairs Affected Me

I had an experience a while back that rattled me not only as a person, but especially as a mother dealing with physical disability. I’m hoping by stating my thoughts, opinions and feelings about the situation that I can bring awareness to the very population who I’d assumed understood compassion and inclusiveness in the first place. Perhaps this response will get them thinking and, better yet, bring an outpouring of understanding to everyone, even those without a disability.

I don’t have personal contact with other mothers or parents with disabilities or chronic illnesses. Months ago, I decided to reach out via the internet. I found a group (whose name I will not mention) that advertised as a place for mothers and mothers-to-be who’re in wheelchairs to band together, sharing ideas, tips, experiences and the like. I submitted a request to join and to my dismay an administrator contacted me, explaining that the group was for women with spinal cord injuries (SCIs) only. I told her okay and went about trying to find another place where I’d be welcomed. I finally found a group for mothers who use wheelchairs that welcomed me and have embraced me. The women in the group have a wide array of limitations as well as causes for why they’re in wheelchairs. I’m happy to be a part of their group and find it extremely helpful and supportive, even when advice, questions and experiences don’t apply to my situation or I don’t understand the other women’s needs very well due to the contrasting nature of our disabilities.

When I was told I couldn’t be in the group for mothers with SCIs, it made me feel rejected; I didn’t have the ‘right kind of disability;’ I was excluded when what I needed and longed for was to be included, to share in similarities rather than focus on the differences. At the time, my mobility was worsening and I was desperately needing to find support, encouragement and hope among other moms who’d understand how what was happening to my physical body was effecting my insides, my feelings, my thoughts, my fears.

So, why would it matter how I landed in a power chair? Maybe the women with SCIs had experienced an immediate and sudden life-altering change to their bodies and capabilities whereas my changes consist of a slow regression and breakdown in abilities in which I’m constantly having to adjust to. But haven’t we all had to grieve the loss of our old selves? Our old bodies? Past abilities? Haven’t we all had to work hard to overcome the challenges, both physical and mental, that have been placed before us? Don’t we all have the same initial worries about caring for our children; caring for ourselves long-term? Aren’t we all more alike in the places of ourselves that can’t be seen through the eyes? Maybe our bodies, our limitations, our disabilities are different, but can’t we find our emotions reflected in each others’ eyes?

To be honest, I was stunned and hurt when told I could not join the group. The very people that I was reaching out to so I could find a place to belong, to seek comfort, to be given support were telling me I wasn’t going to get all that from them because I wasn’t like them; couldn’t understand, relate. The population of women who I would’ve assumed believe in inclusiveness were turning me away. Wow. I hope one of them will read this. I hope they’ll stop and consider the bond we could have shared had they not been prejudiced in believing I wasn’t one of them. I hope they’ll be able to identify the discriminatory behavior that was displayed towards me (and likely other moms as well). Even if none of the members of the group read this, I hope you’ve gotten something out of it. I hope you’ll speak out against exclusivity even if you’re not part of the disabled community. Bring one another close; embrace everyone even if the only things you see are the differences; be supportive of the person who reaches out a hand to you, asking for help or guidance. It is our responsibility to allow people in, especially during their time of need – so that when we need someone, there’s a hand available to grab onto us.

What My Father Taught Me About Invisible Illness & Making Assumptions Within the Disabled Community

An entire month has gone by since my last post. I will not apologize for that – On December 4th, my dad passed away suddenly after a moderately short battle with a chronic illness. The week of Thanksgiving, my family was told he was in complete organ failure; his body was filling with fluids released by his liver; his hernias had shifted & fluid was going into his lungs – we knew he was not going to be with us for more than a year, but were not prepared when he fell, causing his body to shut down. He died quickly, and I’m thankful he did not have to suffer more than he already was.

In reflecting on my dad’s illness and the effects it had on his body, I realized I’d made quite a few mistakes during his last year – especially within the months leading up to his death. When people see me park in handicap parking, it is obvious when I get out of my van that I’m honestly, legitimately and legally permitted to park there. When I use designated stalls in restrooms, no one questions my necessity for those accommodations. My illness and my disability are not invisible. Rather, they are glaring and direct.

My dad, however, did not use adaptive mobility equipment until one month prior to him passing. At the end, he had trouble walking and required the use of a rollator. Before that, when he’d park in a designated spot, here is what people saw: An obese man with no clear physical limitation walking into an establishment. There were times, early on, that I (embarrassingly enough) bristled when I saw him park in handicap parking. Before knowing what was wrong with my dad, I thought he used obesity as the criterion to gain certain accommodations – I hate that I thought these things and am loath to admit them, but am sharing in hopes that someone who reads this will better understand my overall point.

My dad was actually not obese. He had several large abdominal hernias and as I’ve previously stated, his body was filling with fluid. If a person were to look at his face, arms, legs and neck, it would be obvious that he was in fact thin. The “weight” he carried was solely in his torso. Furthermore, to a stranger it may have seemed that he walked just fine. But, to those of us around him, we’d watch in horror and helplessness as each step caused his breathing to become more and more labored (recall the fluid build-up in his lungs).

There are times that people make assumptions about what it means to “look sick.” Assumptions are also made about what qualifies as a “disability.” I’ve heard people grumble about “that heavy-set woman using the handicap stall” or “the fat man who just needs to lose weight so he wont be disabled.” It’s not that those exact thoughts have come into my head, but I’ve already admitted that I myself, as a member of the disabled community (and one who doesn’t need to carry a membership card since I’m rolling along through life) have also wondered why a seemingly healthy and able-bodied individual is using a space or stall or other modification meant for ‘us.’ This is plain prejudice (yes, I admit that!). It’s stereotyping, generalizing, assuming and jumping to conclusions about things I have no right to nor expertise in!!

Whether you are chronically ill, disabled or healthy and able-bodied, I ask that we all cease to pass judgments on people who use services for the disabled community. There’s usually a lot more to the person’s story than their body is able to convey to our untrained eyes.

 

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In Loving Memory of my dad, Rob Sasser, who taught me a lot, even when he didn’t know it. May 12, 1952-December 4, 2016

Not All Spaces Are Created Equally

Yesterday, I was out running errands and stopped at one of the stores on my list. There were two handicap parking spaces available, but I couldn’t park and do my shopping. Why? Because I drive a wheelchair accessible van and can therefore, ONLY use VAN accessible spaces. The store had one van accessible space, but it was being used by a compact car.

Many people do not realize that there is a difference between regular handicap parking and handicap parking that’s accessible for vans. Before I began using my power chair, I myself was guilty of parking in any open handicap spot on the days I needed one, unaware that if I parked in a van accessible spot when there were other spots available, I was potentially blocking entry or exit into that establishment for someone who used a van.

The tale-tell difference between the two types of handicap parking is the width of the slanted lines next to the parking space. In order for a spot to be van accessible, the lines must be wider than they are for a typical spot. The reason? In order for me to exit my vehicle, I must have room to lower my ramp/lift (most often found on the right-side of the vehicle) and then have more room to roll completely off the ramp/lift. This is especially important to me as a parent with a young child, who I must keep safe.

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Drivers of modified vehicles CAN NOT use a regular handicap parking spot!

Back to my errands: I pulled in a spot directly across from the parking space I needed and waited…

and waited…

and waited – a full 10 minutes!

Finally, the lady came out of the store and began to unload her groceries. As she finished, I pulled out and signaled that I was waiting for the space. The lady was elderly and when she noticed me, she wagged her finger at me while giving me a disapproving look; no doubt believing I was ‘too young’ to need that space. She got in her car and proceeded to put on make-up, read mail and make me wait an additional 8 minutes! Thank goodness I was spiritually fit and sat there patiently – no fingers flew up; the window stayed up; my mouth stayed shut and I didn’t even toot my horn!! She finally pulled out and drove past me slowly, shaking her head.

If you must use a handicap parking space, bear in mind the next time you’re out & about, that if there are other spots open, to use them. Please leave the van accessible spaces for those of us who need the extra-wide slanted lines in order to safely exit our vehicles, some of us with our small children. Thanks!

Rollin’ Forward

So, welcome to my new website! I’m really excited and hope that you as readers/followers and I will gain much from this site.

The decision to begin a website came about as another transition I’m making into the world of disability. Since becoming sick 8 years ago, I can’t tell you how many times I’ve cycled through the grief process. I’ve had to adapt to and accept each new phase of my illness & disability as my body’s steadily declined. I’ve coped through humor, faith and hope and am now entering a different phase – one of desire to educate & advocate, giving another voice to the disabled community to promote awareness and gain accessibility.

As a disabled parent, I find there are limited resources for my population. Public places that I’ve needed or continue to need access to do not meet ADA requirements due to what I consider to be inconsiderate & insufficient regulations. Some places claim ADA accessibility but are not, leading me to believe that businesses are not strenuously monitored or regulated.

My future goals are to advocate for stricter and more suitable ADA laws by lobbying at the Congressional level. I’m also looking into the Miss Wheelchair Tennessee pageant, as that would broaden my platform and help me reach more people.

I look forward to continuing to blog about being a parent with special needs and am excited about using this site to further awareness & education for all of us in the disabled community! Feel free to share your comments with me!! And, thank you for visiting my site!!!

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