Special (Needs) Delivery!

Pizza Box Delivery Boy Man Concept Knocking at Customer Door Wall Background Retro Cartoon Design Vector Illustration

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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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.

eazyhold

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

Letting Go of “I’ve Got This!”

For so long, I’ve prided myself on my independence, on my ability to remain living alone with my child, on my capacity to raise my daughter with little outside help. I think having so many movements and physical activities stripped from me has given me a higher regard for that which I’m still able to do. I revel in being able to do things for myself whether that be larger-scale household chores like laundry or smaller things like opening doors for myself. I often tell people in public who try to be helpful (when it’s not needed) that “I’ve got this.” It’s almost been a mantra of mine since getting sick and relearning life and how to live it. No matter what I may look like on the outside, the inside of me is fully functional with a raging ego! Haha!! Using a cane? I’ve got this! Walking with a rollator? I’ve got this!! Self-propelling a wheelchair? I’ve got this!! Driving around in my power chair?? Yep. You guessed it! I’ve got this!!

However, recently, many activities of daily or weekly life have become either quite difficult or impossible for me to accomplish. Laundry has piled up – dirty laundry to be done (because it’s difficult to navigate the 2 steps up & down into the garage, tiresome and painful to complete this task and hard to take clothes out of the top-loading washing machine and front-loading dryer) and clean laundry to be folded (because this also causes a great deal of pain and is taxing on my body, leaving me feeling drained of all energy). My kitchen needs stocking, but going to the grocery store by myself is nearly impossible unless I’m buying only one or two small, lightweight items. I haven’t cooked a meal in weeks because my kitchen isn’t accessible to me so I’m required to stand to prepare food – standing can now only be done in short 2-3 minute periods and even Hamburger Helper takes at least 10 minutes!! Even dishes can seem insurmountable – yes, I can sit on a stool and wash them, but this, too, seeps energy from me and hurts my arms, hands, shoulders and neck (no, I don’t own a dishwasher; there’s no place to put one in any case).

I have a friend that comes and cleans. She makes our beds as well, since I’m unable to do so. But, I’m slowly realizing I’m soon going to need more than that to continue living alone, raising my child. One of my friends helps me grocery shop – she pushes the cart, gets items that are out of my reach and picks up things that are too heavy for me. I always feel loathe to ask her for assistance, but it’s coming to a point where I’ve got to get over that.

Lately, I’m realizing I may not “got this” anymore after all. Weeks ago, this prospect scared me. It left me feeling weak, needy, burdensome and worried about my future. Today, out of nowhere, came the thought that letting go of my independence is being the best mom for my daughter. If I want to continue to raise her, I must admit I need the help… and I must accept that help. Not only will it allow me to raise my kid, but it may teach her to ask for and accept help when she comes to need it in her future. She may learn to accept her circumstances much easier than her mom, who balks at admitting I can’t make a bed!! If I want to live alone with my little girl and raise her to the best of my ability, I must do so with outside help… and that’s okay.

I once heard that no one is ‘independent;’ we were created to be ‘interdependent.’ I think I’m beginning to understand that now. Maybe I don’t “got this”… but maybe there’s a WE who does!!

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!!! 

paw-patrol

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?!?!