About ModifiedMama

This blog is an opportunity to share my thoughts, feelings & anything else as I journey from my once able-bodied, active life towards a life in the disabled community, learning to adapt to my new body & the equipment needed for every day tasks and making modifications in my life as a mother. At the age of 28, while finishing my thesis for a Masters degree in Early Childhood Special Education with a focus on the medically-fragile, low-functioning population and teaching Special Education for my city's public school system, I became sick with an extremely rare neurological disorder called Idiopathic Intracranial Hypertension. The disease has since caused multiple musculo-skeletal disorders throughout my entire spine. My students became my teachers as I learned to adapt to and accept my physical limitations after having spent 28 years able-bodied and healthy. I am slowly losing my mobility, coordination, balance & eyesight. I am in recovery from drug addiction & alcoholism, and my sobriety date is June 1, 2012. I attend 12-step meetings, sponsor other women, go on service commitments and work the steps. My faith in God has been the most important thing in my life. With Him, I'm able to stay positive (though I have my days like any other precious child of His), stay sober & have hope in my and my daughter's future. With Him, ALL things are possible!!! In 2011, I had a healthy, beautiful little girl after having been told by doctors at age 26 that I would never conceive naturally nor carry into a 2nd trimester. Well, I'd also been told I'd never walk again after initially getting ill, but learned to do so while pregnant and walked without using any mobility aid at all for 15 months! Doctors can never know what God has planned for us! :) I now mostly use a power chair but can still walk short distances with the help of a pronged cane or rollator. I am currently awaiting a trip to team-training, where I'll train for 2 weeks with my new Service Dog. Having a Service Dog will not only benefit me, but also my daughter who is my biggest helper. I am excited that she will have the opportunity to live a more care-free & "typical" childhood, though having a mom with special needs has been her normal. We know life no other way. And, honestly? I wouldn't want life to be any other way - We are blessed beyond measure!!

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.*

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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/ **

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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