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            Emergencies in my baby girl’s life were something of a biweekly event. Starting at about two months of age, I rushed my daughter to the Children’s ER often for gastric issues. These episodes consisted of her not being able to keep formula/food down, refusing to eat and screaming in pain that could not be comforted. I was told to switch formula time and time again until she was nearly 7 months old, at which time it was suggested she may be lactose-intolerant and we began a soy-based formula. But even then, she continued to have issues with her digestive system. and didn’t hold solid foods well.

            My daughter is now seven and still has gastric/digestive problems. We’ve since learned she is NOT lactose-intolerant. In fact, last year, she was diagnosed with a rare connective tissue disorder called Ehlers-Danlos Syndrome and she has type 3, otherwise known as hypermobile Ehlers-Danlos Syndrome (hEDS). I’ve learned to stop rushing to the doctor or the hospital due to her headaches, sore throats and stomach pains. In some ways, her being diagnosed with a rare disease has relaxed me when it comes to her medical treatment. The more I learn about hEDS and figure out her unique set of symptoms and their severity, the less I tend to freak out about certain aches, pains and other things that used to panic me.

            Yet, recently, I learned another lesson: that having a child with a rare disease will keep me second-guessing my choices regarding her care; that I’ll feel guilty about my decisions surrounding her symptoms no matter what I decide; that I’ll think I’ve made the wrong choice for her no matter what.

            I came to this emotional revelation a few weeks ago when she began complaining of stomach pains again. I gave my pat response I’ve learned over the years and on a Sunday evening, we went through her bed time routine as usual even as she persisted that her stomach hurt. The next morning, after she was dressed for school, I happened to caress the side of her head and realized she was warm. Her temperature was only 100.3 but I called school to let them know she wouldn’t be there. She was still saying her stomach hurt but her tone had changed to one of intense pain and urgency. I called her doctor and they agreed to fit us in later that day. I gave her some Motrin and let her lay down. Less than an hour later, I went in to check on her and found her white as a sheet, teary eyed and burning up. Her temperature had risen to nearly 103.0 even after a dose of medicine. I called the doctor and they said to take her to the Children’s Hospital immediately.

            After several tests and an x-ray, I learned that she was severely impacted. I was given a prescription for laxatives to give her twice a day for a week and told to continue maintenance laxatives so this didn’t happen again. The two lead doctors said this could have been related to her hEDS but we can’t know for sure. I sat there waiting for our discharge papers feeling silly all over again. I’d thought she had appendicitis or a similar serious condition and here she was constipated, albeit significantly. When one of the doctors came back in, I told him I felt ridiculous and he said, “Having a sick child can make you doubt yourself. Don’t let it. You’ve done the right thing.” It was then that I realized I was still jumping to conclusions that were far more serious than the end diagnosis (and thank God for that!); I was beating myself up for not taking her stomach pain seriously enough, for not taking action the night before even though if I called the doctor over her every stomach ache, it would be a daily, unnecessary occurrence.

            Rare diseases are tricky enough. Having a child with one is an emotional entanglement of worry, self-doubt, guilt, fear and feelings of inadequacy. I’d rather rush to the hospital and find out it’s simply a symptom of her hEDS than not act on it at all. But I also can’t rush down there each time something comes up. I feel jerked around by her EDS at times, like it’s playing a game and I can’t win no matter how hard I try. There’s one thing I know for sure though: that my daughter is uniquely wonderful; that’s she’s strong, creative, funny, intelligent; that she’s loved; that she brightens my life and many others. Her having a rare disease is a tiny, miniscule part of who she is. But it makes up a huge part of my emotional focus as her mom.

 

 

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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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