Celebrating Acceptance

When we think of Valentine’s Day, we think of love. And this year, for me, there was that. But it was also a celebration of one of the principles that accompany love – acceptance. Allow me to elaborate:

Last year, my daughter began kindergarten at a new school. We found ourselves in a community of people where I was the only person, let alone parent, in a wheelchair. She and I both dealt with her peers’ questions. Some kids were curious in an innocent, friendly, compassionate manner while others would abruptly ask, “What’s wrong with you?” “Why doesn’t your mom walk?” “What’s wrong with her legs?” While my daughter and I are used to being stared at, pointed at and either answering or dodging questions while in public, this was her first experience dealing with all of this amid making new friends and find her place at her new school.

By the time Valentine’s Day rolled around last year, us parents were sending out sign-ups and emails for the party that was to take place in her classroom. I helped her pick out treats and cards for her friends. And then, one night during dinner, I mentioned being excited about coming to her party the following week. She glanced shyly at me and asked, “Would it be okay with you if you didn’t come?” I asked her why? She said it would embarrass her; that I was the only mom in a wheelchair and she just wanted to have fun. I was crestfallen yet I couldn’t show her how bad I hurt. I told her I understood and only wanted her to have a good time. I promised her I wouldn’t come. She thanked me. It was the first time she’d ever told me I embarrassed her or told me she didn’t want me to join in on something she was doing. While it hurt my heart so bad, I knew it wasn’t about me. I couldn’t let on how I felt because it would make her feel guilty. The day of the party, I sat out in the carpool line waiting for her festivities to be over so I could hear all about it. A fellow mother sent me some pictures since I ‘couldn’t be there.’ That was my undoing. I started sobbing. I wanted to be in there watching her smile and have fun. I cried harder as parents and kids began coming out of the school with bags full of treats and cards, smiling and talking a mile-a-minute. But by the time my little girl got in the car, I’d dried my tears and listened as she told me all the fun things they’d done and what she’d gotten from her friends.

So, fast forward to this past Valentine’s Day. The same planning began taking place leading up to the holiday. The parents signed up to volunteer time and items and I took my daughter shopping for her classmates. I assumed I wasn’t coming and so made no plans to do so. The night before Valentine’s Day, she asked me if I was coming. I asked her if she wanted me to and she responded, “Of course! I love you! You have to be there!” I was elated! I realized she’d come to a point where she no longer cared about how I functioned as a mom; she cared simply that I was her mom and she wants me to be present. Her friends and classmates have also become less shy and inquisitive as the year has progressed. I wonder if they’re realizing I’m just like their moms, except that I parent from 6 wheels instead of 2 legs. I feel accepted there, even by other parents who didn’t know quite how to interact with me at first.

The party this year was so much fun! And to be a part of it; to be wanted there, needed there felt divine! The teacher had taken the students out of the classroom so that me and a few other moms could set up the party. When the students began filing into their newly decorated room, my daughter spotted me, yelled “Mommy!” and ran into my arms. Our embrace was caught on camera by another parent and it embodies the love my daughter and I feel for each other. And, this year, along with that love has come major acceptance of our situation, of each other. Yet isn’t that what love is all about?

Valentine's pic

photo credit: Steve Slone

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School’s Touching Accommodations

If you are a parent, you know the feeling of pride that comes from watching your child(ren) perform in a school play or sing at an event; you’ve experienced the joy that occurs when you visit the classroom or engage in school activities with your child(ren). But, imagine if you had to stay outside the classroom door or couldn’t make it into the auditorium to watch the show. Imagine the feelings of guilt, sadness and separation you’d feel if you couldn’t participate the way every other parent was able to participate. Unfortunately, this happens more than you may think. When a parent uses a wheelchair, or doesn’t have the ability to climb stairs, there’s often no choice but for them to miss out on various aspects and events in their child(ren)’s life. For no other reason than structural inaccessibility, some disabled parents are placed in the awkward position of not being present in their child(ren)’s affairs. I’ve had to hear about my daughter’s classroom activities from other parents and it left me feeling embarrassed, guilt-ridden and upset. I’ve heard other ‘wheelie’ moms express anger, frustration, grief and humiliation at having to miss out on things because they couldn’t gain access into the venue.

When my daughter first started kindergarten at her new school, there were plenty of handicap parking spots available, but none were van accessible. The principal and school security officer both told me to simply make my own spot or take up 2 of the handicap spaces. So, for the first few months of school, that’s what I did. The school is extremely wheelchair accessible once inside – the entire layout of the lower and upper floors flows together via ramps and an elevator is in place. I’m able to go anywhere inside the school I need to go. But there was only one entrance that was level for my power chair to go through and it’s located at the main entrance, which is two schools down from the elementary school (the school itself contains preschool through high school). I would try my best to park near the main entrance whenever I arrived for school activities and then make my way through the high school and middle school to the elementary wing. I was able to attend all her class parties, her performances and the like. It was wonderful, and I had no complaints. I was simply happy to be able to go and be!

During the 3rd month of fall semester, the principal told me they’d put in a van spot for me right by the elementary school! I was excited and felt quite fortunate that the school had made accommodations for me. The only problem was that once I parked, I still had to trek up to the main entrance to get into the school. They had not realized there wasn’t a way into the elementary school for me. I told them it was no big deal (and this was true but on rainy days and as the weather got colder, it wasn’t the most ideal).

 

Right before Christmas break, I arrived one afternoon to pick up my daughter and a couple of faculty members approached me. They asked if I’d seen what the principal had made me. Apparently, the principal had decided not to waste time waiting for approval and necessary funds from the budget – he’d spent that day building me a ramp into the elementary school!! I was moved to tears! It sent me the message that I was just as important as the able-bodied parents; that I was wanted and needed there; that I was respected. They recognized my need to be with my child. My daughter’s school made it possible for me to have the same access as the other parents. But, it was what the Headmaster said to me that really meant a lot: he told me yes, it was done for me, but that it would be there for other parents like me in the future.

So, it seems that while they have given me two huge gifts in the form of making the building more accessible, I in return have given them a gift – the gift of awareness. I’m so thankful for all of this!! Using a wheelchair should never prevent me from being present in my daughter’s life but the reality is that it has. And there will be more times in the future that it will. But, as society becomes more aware of the existence of parents with special needs and is educated about the need for accommodations, disabled parents will gain equal access in places such as schools, gyms, auditoriums, etc. There will be a day when we no longer experience our child(ren)’s lives vicariously but are fully engaged as we are meant to be.

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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??*