My VOICE: Difference between being a Mother and a Caregiver

Q. What is your name?
A. I am Shannon Puckett

Q. What is the disability that impacts your life, or the life of a loved one.

A. Mother of 8, 4 with complex special medical needs. Honorary PHD’s in Cerebral Palsy, Epilepsy, Autism, vision impairments, respiratory complications, hearing loss and juggling. Currently studying for hypothetical 0426161910adegrees in Spina Bifida and Hydrocephalous.

Q. Tell us about a time when you felt empowered.
A. When we first began our family, I never imagined the journey God had in store for us. If you would have shown me a glimpse of me now, back then, I’m positive I would have freaked out. When our daughter Aly was first diagnosed with epilepsy and CP, I barely knew what either of those terms meant. Let alone, what the full depth of those diagnoses implied. I did know that my lack of knowledge scared me and was not benefiting my daughter. I instantly became the type of parent all doctors hate! The parent with a thousand questions, who keeps asking the same question over and over and over again, until fully understanding. Yes, I would like a power point, yes, I would like for you to break it down, yes, I do have all day even if you don’t. No, you may not leave this tiny little room until I fully comprehend what an EEG is and how every single lead works and why each one is placed exactly where it is placed, and yes I want you to show me how to read the results! I took a few years for the doctors to cave to my endless bombardment of questioning. I am convinced that the schedulers actually schedule our appointments for a longer block of time than usual when they hear my name, knowing my reputation. And I am ok with that. All my educational harassment has paid off. My husband and I are our daughters first line of defense. We are their A team. And the more we know about their diagnosis, the better we can care for them and help those that are part of their care team. In the last few years, I have received several compliments from members of our daughters care teams, in regards to our level of knowledge in all things related to their care. At appointments and during ICU stays I feel like we are considered as more than just “mom and dad”. I know that our daughters care teams acknowledge our years of experience and value our input. Knowledge of our daughters diagnosis, treatments and care have empowered us to provide them with the best care we could possibly offer them.
Q. If you could change one thing that all public spaces had to change to make life easier what would it be and why?
A. Over the years we have never really dealt with a lot of public access problems or discrimination. Our daughters are still young, and for the most part their wheelchairs are very stroller-like. We have a large family which actually complicates our outings more than our daughters disabilities most days. But the one issue that we do have on a regular bases, is finding a handicap parking space. I know this is common for all of us, there are never enough. We currently have two in wheelchairs, and will soon have a third. This makes loading and unloading “fun”. So when there are no van accessible handicap spaces available, we usually have to park way in the back of the lot, in order to have access to unload. Often times, we still come back out to our van to see that someone has parked right beside us, and we have to move the van just to load back up. And in AZ, in the summer, this just triples the fun factor! I’m sure many of you can relate. I would love to see a percentage of handicap spaces reserved for vehicles that were for those only utilizing wheelchairs. I know this may offend some of those within the disability community. It’s kinda the giant white elephant in the room. It touches on the fact that maybe some use and abuse handicap parking privileges. While often there are others with perfectly legit placards that may appear to not need them. I know that applying this policy would imply that certain disabilities might be more important than another, But the fact of the matter is simple. When there are no handicap spaces available, an ambulatory person looks for the next closest space, whereas a wheelchair person is left to find a space that will allow for space to unload their chair. Limiting the use of certain handicap spaces to wheelchair patrons only, would increase availability to them, making parking in general less of a hassle.
Q. Tell us one thing you want people to understand about living with a disability, or being a caregiver for someone with a disability.
A. Caring for our daughters has changed many aspects of our lives. We know the inside of the children’s hospital better than our own home. We can change a g-tube, deep suction and perform respiratory therapy treatments as well as any trained nurse. Our lives revolve around doctors, therapies and insurance claims. I spend half my life on the phone making appointments. But, none of that changes the fact that I’m still a “normal” mom. I chase toddlers, make school lunches, hide in the bathroom and pretend mount-laundry does not exist. I have good days and bad days. Only, sometimes my bad days involve disputing liabilities and coverage. But, there is still a me behind the awesomeness that IS my daughters advocate. Sometimes, I feel like as caregivers we are seen as an extension of our children. We do so much for our children that it is easy to forget that we are a whole separate person. I have hobbies and interest that have nothing to do with yelling at insurance agents or waiting on hold. I love meeting up with other moms for moms night out or play dates at the splash pad! Yes, we are busy, and yes, I may have to schedule a month out to make plans with you, BUT please don’t count me out just because I am a caregiver. Caregivers are more than just the person they care for and we love to spend time with others and be invited out for coffee and hang outs.
Q. Tell us what society can do today to stop discrimination against those with disabilities?
A. Today society is doing more than ever to include those with disabilities. There are dolls with disabilities, multiple special needs paraprofessional sports, even athletes crossing over to mainstream athletics with disabilities. Schools are doing better at teaching inclusion and offering alternative options for students with disabilities when needed. While great progress has been made, we still have a long way to go. But, we need to be careful that in our journey to educate society about those within the disabilities community, we do not create a stigma that people with disabilities “need” society to constantly put them up on a platform of inclusion. Only when society can look at an individual in a wheelchair, or a person with a prosthetic leg, downs syndrome, ect, and see the person and not the disability, will we have reached full inclusion. And if we consistently tell society that those with disabilities need more, must be offered different, or events changed entirely to include them, society will continue to only see the need and not the person. We must fight for inclusion in a way that advocates for the person and not the disability. I know this is easier said than done, and it is a very fine line. One that if we do not keep an eye on, will ultimately do more harm than good to the disability community.
Aly in her new sleep safe bed

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