Back in Action…

So, it’s been several months since I’ve written anything. There have been 2 main reasons for this; one being positive and the other, not so much. As an optimist, I’ll start with the good news! I HAVE GONE BACK TO WORK! Yes, I now work for a Treatment Center specializing in drug and alcohol rehabilitation. I am thrilled – I’d wanted to work in either the field of recovery or disability. I thoroughly enjoy my job and get along splendidly with my coworkers. The facility also made physical accommodations to make my office and the restrooms more accessible for me.

The other reason I’ve not been writing as much is due to regression in my neck. I will be having surgery in mid-September to take out 2 discs. I’ve been in a lot of pain and also deal with tingling & numbness down my right arm into my hand.

I want to add that since I last blogged, I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). After my diagnosis, my daughter was also diagnosed so we’ve been having to make some lifestyle changes. I reveal this because it may sway what I write about in the future.

Other than all of that, I’m hoping to catch up so-to-speak. Hopefully, you’ll be reading more from me, ModifiedMama!

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Not Ya Mama’s Cookin’!

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Like many others, I grew up watching sitcoms on television that depicted joyful, loving families who’d sit down together for meals that were often cooked by the mother. I had no idea that I was learning anything; I simply watched for my enjoyment. But, I was learning life-lessons about family dynamics, familial norms and expectations of motherhood.

Now that I’m a mom, I realize that these lessons learned subconsciously have caused me quite a bit of discomfort in myself as well as guilt and shame about my own ability (read: inability) to perform the expected duties of a mother. Due to my physical disability, my household doesn’t follow societal ‘norms.’ We have our own ‘normal.’ But although I’m aware of that, I nonetheless experience undeserved and unnecessary guilt because I’ve inadvertently placed expectations on myself as a parent; expectations I’m not able to live up to.

photo credit: iStock/CSA-Archive

Most recently, as my body has deteriorated, I’ve stopped being able to cook in our inaccessible kitchen. I started ordering deliveries from pizza places and delicatessens and we began to pick up more and more fast food. I knew my young child was no longer getting healthy meals and therefore was not consuming the necessary nutrients she needed for her holistic growth. But I felt helpless to change the situation. Until one evening, as I watched her eating yet another slice of pizza, I thought, “It’s my responsibility as her mom to make sure she eats healthy. If I can’t cook myself, then it’s still my responsibility to find a way for her to be healthy.”

The next day, I went about a month-long process of info-gathering. I searched for businesses that would deliver healthy, pre-cooked meals to our home. I finally narrowed the list down to two places, one national and one local. My daughter and I decided to try the local company first. We ordered only 2 meals, so we could try them and decide if we liked the food. We did!! So that week, I placed an order for a week’s worth of dinners to be delivered the following Monday.

When Monday dawned, I felt excited but also extremely nervous. I assumed that when the meals came, and I placed them in our fridge, I’d feel guilty that I wasn’t the one who provided them. But, the food came, and I placed the containers in our refrigerator and sat there staring into it at the shelf full of correctly-proportioned, healthy meals. I realized, maybe I wasn’t the one who cooked all this, but I am the one who provided it! I’m the one who did all the research into the various companies who offer food delivery services. I’m the one who ordered the meals. I fulfilled my responsibility as a mom to provide my daughter with healthy food!!

Many times, for me, it’s all about my perspective. When I find myself feeling negative about a situation, there’s nearly always a way to turn my attention to other aspects of it and see the positive side. I don’t need to follow societal norms! I’m not obligated to live up to anyone’s expectations! My parenting shouldn’t be judged based on how I get things done but rather that I do! My daughter and I have been eating delicious, healthy meals now for 3 weeks and I’m proud of myself for getting this done, for making the changes necessary to ensure that her needs are met.

 

*If you’d like a list of companies that deliver healthy, proportioned, precooked meals, feel free to email me at the address listed on this site.*

Walkin’ & Rollin’ Thanks to ADA!

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Before I became disabled, I knew what the Americans with Disabilities Act (ADA) was and the reason it was implemented. I understood on a cognitive level why it was important. But when it’s significance became personal to me, the journey from the head to the heart was complete. Now, as a parent with a disability, the ADA is vital in the day-to-day lives of me and my child. For the purposes of simplicity, I’m going to focus on the area of the ADA which most effects me as a disabled parent – the compliance of public buildings, parks, venues, etc. to grant me complete participation in the activities which the business provides. Public places are required to make sure that I’m able to share experiences with my able-bodied peers in equal measure or as close to it as possible. I’m not to be denied the ability to either access or use public facilities.

As a parent, these ADA requirements mean the most to me. I’ve dealt with feelings of guilt a lot as a disabled parent. I want the most typical childhood possible for my daughter; I don’t want my physical limitations to limit her engagement or enjoyment in kid-centered activities; I’ve worried about her having consequences for something neither of us has any control over. Unlike my able-bodied friends who are themselves parents, I’ve shown up to a few birthday parties for my child’s friends and not been able to enter. We’ve arrived at parks and have not been able to play on all of the equipment because I could not access the areas. My daughter is currently 5-years-old so you can imagine the disappointment and, in the past, the lack of understanding why we had to leave without doing what we’d gone there to do. Each time this has happened, my heart has broken for her and I’ve felt nearly crushed by guilt and the realization that it’s all my body’s fault. There have been times I’ve managed to push through the pain and mobility difficulties so that she can have fun but those times have been rare.

Handicap_Accessible_SignWith accessibility issues becoming more widely recognized and businesses making necessary structural changes in order to meet the needs of the entire public, my daughter and I are able to do more and more. We’ve taken advantage of modifications at the skating rink so I could roll along with her on the rink; we go to theaters that have wheelchair seating in the front or on the sides as opposed to in the very back where our view is hardly worth the price of admission; we go to a local park that’s well-paved around the playground so I can keep an eye on her while she plays; we go to the library; and recently spent a week at the beach together thanks to the city’s efforts to make the area more accessible!! Also, at birthday parties that are held in bouncy-place type venues, arcades and other exciting kid-friendly places I’m able to enjoy the fun right along with my daughter and the other parents.

I would like to see stricter ADA guidelines and enforcement in the future. However, our society has come a long way and I feel grateful to live during a time when awareness, advocacy and education concerning the disability community are flourishing. My hope is that I can be a part of the ongoing changes and positive impacts made for people with disabilities. I hope an able-bodied person will read this blog and try to empathize with some of the feelings and situations I’ve mentioned so that they might understand the importance of the ADA not only on a cognitive level but on a spiritual and emotional one as well.

Thanks to the ADA I have rights, I’m protected and I’m free to be who I am – not stunted and fettered because of what I have, a disability. Because of the ADA, my daughter and I are able to enjoy family outings, have fun and “walk & roll!”

 

**This blog post first appeared on The Disabled Parenting Project – http://disabledparenting.com/walking-rolling-daughter-thanks-ada/ **