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.

 

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!

 

If I’m Not Sorry, Why Are You?

Upon hearing the story of what happened to me at age 28 (getting sick; the beginnings of physical disability), most people look at me with pity in their eyes and sympathy stitched on their faces and tell me how sorry they are. I understand that this is a response born of compassion and of a desire to comfort. But it also stems from the inability to relate; ignorance of how this part of my life’s experience has played out and affected me; and misunderstanding of my feelings concerning my illness and disability.

You see, I am NOT sorry about becoming ill and disabled. And if I’m not sorry, why should you be? It’s true my life changed completely back in 2009 – all the dreams, goals and plans I’d had for myself fell out of reach; all the hard work I’d put into earning my Master’s degree and being a Special Education teacher became meaningless and futile; life as I’d known it for 28 years disintegrated.  At first, I admit to being full of self-pity. I felt wronged by life; a victim of cruel circumstances. I felt depressed, angry and hopeless.

One evening, I was crying out through sobs and tears, “Why me?!” over and over. All of a sudden, a new and seemingly alien thought occurred to me – Why NOT me? I was perfect for this situation! I knew how to modify my environment, sometimes with ordinary, household items; I knew the services and organizations that were at the disposal of the local disability community; and the whole time I’d thought I’d been teaching, I’d been the student – the children I’d worked with had shown me how to be determined, motivated and to enjoy the life I was given. I could choose to wallow in grief and pity or I could embrace the new circumstances of my body, my life and do my best with what I still had.

Since then, I’ve gone through many stages physically, mentally, emotionally and spiritually. I’ve learned a lot about myself, about how strong I am, what I’m able to handle. I’ve learned new coping skills. I’ve learned to accept my illness and prognosis and have arrived at a peaceful place with it. I’ve learned how to use my voice to advocate for myself and now, for other parents with disabilities. I’ve learned how to educate and be effective in my community. I’ve learned that my abilities and strengths far outweigh my limitations and weaknesses.

I’ve also been brought so much closer to God. I didn’t even believe in Him back when I was diagnosed, but can look back at that night and get chills realizing He loved me enough to be in the ER with me that night, regardless of how little I thought of or felt about Him. The director of the ER had written his doctoral dissertation on my extremely rare neurological disease and was able to diagnose me which not only brought back some of my eyesight and saved my life, but ended the 3-month-long search for what was going so wrong with my body. My faith is strong these days and carries me through the difficult times, the scary times and even the times when doubt may creep in just enough to cause worry lines to form on my face. I know He’s watching over me and loves me very much. He doesn’t see my failing body, my medical equipment or the awkward way I sometimes wander through the days – He sees my heart. To Him, I’m perfect. And, most days, I’m able to see myself through His eyes.

Because of getting sick and losing so many abilities of my body, I’ve been able to find gratitude which I honestly didn’t have much of before becoming disabled. I’d spent 28 years taking every moment and each movement for granted. Now, I savor each day and rejoice in what my body is still capable of doing. This has been yet another gift of what so many people seem to view as ‘a tragedy’ in my life.

Please don’t feel sorry for me. For 28 years, I lived in a healthy, able body but had a broken, damaged and deteriorating spirit. My outlook on life was negative and my self-esteem near non-existent. Since my diagnosis, the situation has reversed itself. Now, my body doesn’t work so well, but my heart and soul are overflowing with joy, peace, contentment, self-confidence and a zest for life. I’m grateful for each day and enjoy every moment. How could I be sorry about that?!

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

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!

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.