Mommy’s Nervous About Kindergarten, too!

Today, my daughter began Kindergarten. For the past several days, she’s expressed the typical fears and nervousness about starting at a new school with a new teacher in a new building with new friends to make and so on…. We talked about her feelings and I tried to help calm her anxiety by pointing out all her amazing qualities, her strengths, the fact that everyone in her class was feeling the same way and by praying with her.

It wasn’t until we were walking (well, I was rolling…) down the hall that I started having my own worries and fears. Kids stared at us and I received the usual range of facial expressions – some children smiled sweetly, others looked at my chair with terror in their eyes and others frowned at me. The ‘peekers’ were there, too – the little kids who slide behind their parent and glimpse out at me shyly. While this is part of my normal, every-day life, it got me thinking about the days ahead for my own little one.

As I got into my van, I wondered if my daughter was in her classroom fielding questions about me. Was she having to explain why I’m in the chair? Was she trying to answer a multitude of questions about our lives instead of playing with the purple play-doh that had been set at her desk? I worried she was spending time advocating for me instead of making friends. Plus, she can get quite loud and vocal since she’s very protective of me: there was an incident at her last school where a boy laughed at a disabled character in a story book and my child screamed at him, “Disabilities are NOT funny!” While this is a trait of hers I’m quite proud of, I don’t want it to distract from her enjoyment or engagement in the classroom, especially a new class.

I know that what makes up our ‘normal’ are the stares, the comments, the whispers, the looks, the questions and what-not. I know none of this is new to either of us. Perhaps I’m worrying for no reason (most likely the case!) but I simply want my daughter to focus on and enjoy her first day of ‘big kid school’ and not have to automatically educate a class full of five-year-olds.

The guilt, the illogical but real guilt is back today. My differences have the ability to make my daughter different. While growing up with a disabled mother has impacted her positively, I worry it can have negative consequences as well. I hope she’ll be treated like any other child by the kids at her new school. I hope kids at this school will be just as easy-going as at her preschool – but these kids are older and this is a new experience for her as well as for me as a mom. Will my daughter be bullied because of me? Will she be shunned?

So, there it is – I’ve got the “First Day of Big Kid School” jitters, too. They’re probably all just us unfounded as my daughter’s fears but they’re real to me just like they’re real to her.

*So, I just picked her up a couple of hours ago and guess what? She had the best first day ever! She made “SIX new best friends” and apparently, none of them asked about her mom’s wheels!! What were we both so worried about??*

Advertisements

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.

 

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!

20170323_134836

 

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!!

Why Play Dates Make Me Nervous…

play-date-pic

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!!! 

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?!?!

More Mama Modifications

So this arrived today:

cane

To you, it may just be a cane with a foot-base. But to me, this cane represents many aspects of my adapting to new challenges. It represents my letting go of pride and ego – it took me weeks to finally hush the voice inside my head that insisted I’d look like an old lady; it finally occurred to me that acquiring this type of cane would not turn my hair cloud-white, cause my shoulders to stoop or wrinkles to set creases along the planes of my face!!

This represents my acceptance that my body’s gotten a tad worse; balance is more difficult; walking can be precarious at times. And if my old cane fell while I was alone? Well, the challenges that caused me were well worth taking a closer look at my need for more efficient safety. There’s a grieving process that occurs each time my body presents me with new limitations. Breaking through the denial can be cumbersome and unpleasant. Yet, it’s necessary if I’m to continue living the life God’s blessed me with. Therefore, this cane (or any new mobility equipment) is symbolic of the respect and love I have of myself since I’m taking steps necessary to stay safe and well.

It’s not just me, however. There’s a wonderful, caring, funny, helpful, smart 5-year-old who’s become increasingly worried about me falling… and possibly dying. As many know from my previous blog post, my father passed away after falling in his home. My daughter knows I’m prone to falling and has connected his death with the possibility of mine. Lately, I’ve watched her struggle to contain her anxiety as she watches me walk about the house. She’s wanted to review the plan we have in place in case I do fall. We’ve practiced “dialing” 911 on the house phone and on my cell phone; what to say to the dispatcher; the fact that I may be taken away in an ambulance; whom she might stay with if I were to need overnight care for her. It’s been heartbreaking, as her mom, to need to keep reiterating that her grandfather and I have different illnesses; that mine will most likely never kill me; that I have great doctors who monitor me and I take my medicine; that even if I do fall, it doesn’t mean I’ll die, too. Telling her she doesn’t have to worry about me does little to alleviate her fears. Walking with an aid that keeps me more balanced and stable can do much more to relieve her stress.

To her, my cane represents less worry about her mom. It represents the ability to not have to agonize about emergency-plans. It symbolizes a more care-free, happier childhood for her. As a mom, that’s priceless and something I’d be willing to adapt to any modification for her to experience!!

For both my daughter and me, my new cane represents us moving forward in life – literally and figuratively. We are always adjusting, adapting and modifying our lives to fit with what my body can handle at any particular moment. As a parent, there’s a guilt that she’s being dragged along this path with me. Yet, I see it’s made her much more flexible, accommodating and accepting of changes that pop up in her world, from school to play dates. If you see us out-and-about, we’ll be walking a bit more slowly and much more carefully. But chances are, we will be quick to smile and share in the joys of life with you!! So, please stop and say hello… and don’t worry about me falling!!

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!!!

img_0569