There is pride, accomplishment, satisfaction, in knowing that you put in the work and the outcome will be a positive result.
Image you have been given a homework assignment. You have spent a few weeks researching the topic, digging through information, coming up with a completed assignment that you feel is thorough, representative of you, and you are gong to be rewarded with a good grade.
You happily turn your assignment into the professor. The class reconvenes in two weeks, and you are handed back your assignment. You look down, and it surly isn’t the result you expected. You find yourself staring at the letter grade “F”. You failed!
On the assignment, you find the following note ….
” You are an intelligent person and a good researcher…but I have to tell you that if you follow this treatment plan, your child will not thrive .”
SO let ‘s step back and examine assignment number four!
The goal of the assignment was to come up with a care plan for my 3 week old fictitious son diagnosed with Down syndrome.
I was given restricted guidelines, asked to review suggested websites, and was told I would have access to the books in my local public library.
I was given a list of symptoms to be addressed, and asked to come up with a care plan.
I took this assignment extremely seriously. I made my way to the local library and enlisted the help of the local librarian. We pulled books that I felt were critical to the completion of my care plan.
I combed through the provided internet references. I became a detective. I would not call myself Sherlock Holmes, but I was determined to nail down this care plan.
The care plan ended up being 6 pages long. I addressed the following aspects …
- Where to start
- Finding a case manager
- Understanding each symptoms and asking pertinent questions to address the symptoms
- How will I organize appointments
- Learn more about region centers
- Understanding what defines “normal” clild development”
- Daily schedule
- What is the latest suggested health schedule for a toddler with DS
- Outside support
- Enlisting help
I felt the care plan covered a wide spectrum and would give my son the best opportunity to embrace a rich quality of life.
What is compelling about this assignment was that I initially felt upset that I HAD FAILED. Imagine this was a real world scenario, and I am the mother of a son with Down syndrome?
It’s not that I failed personally, it’s that I COULD HAVE FAILED MY SON.
I had time to myself daily for the 3 weeks to prepare my care plan. I wasn’t burdened by my grief, exhaustion, worry, unsupportive husband, unsupportive family, insecurity ….
I wasn’t burdened by those things. Time was available to clearly think and devise a plan, and I still managed to fail!
Amniocentesis, genetic testing, accompanied by opinions of medical specialist make it clear that the journey is too difficult, too much of a burden on the family, and they will openly suggest termination of pregnancy.
What are we saying to the mothers that are bravely accepting the challenge to have a child with Down syndrome, and then not giving them the proper guidance, care, and direction to allow them to make the best decisions toward their child ‘s quality of life.
Imagine what is running through the subconsciousness of a mother ‘s mind!
Is this the best plan of attack? Will my son be able to progress in this world?
In the back of their mind lies nagging questions, because there are no guidelines, no one perfect solution.
A particular group or subset of people may feel they have the ideal solutions, but if you head down that suggested path, and another group is telling you,” that’s not the best way to care for your child, head down this path” imagine the confusion and heartache. I can see how some families would freeze up and not follow any suggested care plans.
I can’t help but think of the families that don’t have access to quality healthcare. Families that don’t have the financial means to advocate for their children.
What about the parents that have not prepared? Parents that have no previous knowledge that their child would be born with Down syndrome!
Andi made it abundantly clear that there are biomedical interventions that families are providing their children to help their children with DS develop closer to the typical child.
Nowhere in my care plan research did this information present itself!
I want to acknowledge the families that have been open to sharing what works and has not worked for their families via the internet. Families that are blazing a trail and pushing to make sure information is available to everyone.
Some members of the medical community have made alternative treatments taboo. The use of a particular protocol or suggestion that is not scientifically researched is considered quackery .
Should a mother raising a toddler with Down syndrome hold off on using biomedical interventions because the scientific community has not come together with funding to push for research on biomedical interventions?
Or should first time parents listen to the families that have lived and gone through having a child with Down syndrome and have seen improvement in their children’s lives using biomedical interventions?
I don’t have the answers, but I’m hoping that EVERY FAMILY HAS ACCESS to ALL of the information available to them.
Thankful to have a desire to share thanks once again! I was clouded by a negative health catastrophe that started a few years ago leaving me feeling far from thankful!
That has changed.
The cloud has lifted enough for me to see the blessings.
This year my family skipped over our traditional Thanksgiving day shout outs. We normally go around the table sharing what we are thankful for.
As difficult as it is for me to admit, for a few years there I HATED this tradition. I would smile and oblige, but deep down I was too bitter inside to feel genuinely thankful.
The last two years I have felt my heart soften. I was ready to express everything I was thankful for with pleasure.
However, this year we got caught up in movie title charades. I didn’t get a change to let thankfulness spill over.
(Your girl was asked to act out scenes from Platoon and Gremlins. WHAT? Sorry team for not earning you any points!)
Each person that has entered into my life over these last few years has been instrumental in opening up the floodgates of thanks!
It is with a full AND thankful heart that I drop a few shouts outs………….
Babe! You are the truth. You didn’t need to recite the vow “in sickness and in health” in order to honor it daily.
My entire family! Love and blessings.
Thanks Noreen for your unwavering friendship. You are one of the ONLY friends pre-vestibular that get’s me!
Thanks to Blake Watson for being a patient teacher.
The 12-12-12 project members that all have been instrumental in my growth.
Theresa for inviting me to her dizzy group, Dizzy World Cafe.
Every member of the Dizzy World Cafe .
My VRT therapist.
My entire medical dream team.
VEDA for asking me to share my story. (Kerrie, you are THE BEST!)
Disability Horizons for allowing Blake and I to collaborate on an article.
Rhiann for her sweet spirit.
Jeanne for trying to school me on bioidenticals.
Tom Hogle for caring about what I have to say.
Jeffrey Zeldman for reminding me that I still have a voice.
Kim for allowing me to be part of her journey.
Sarah G. for allowing me to express my vulnerable moments.
Curly Jane for being a ray of sunshine!
Veronica for teaching me thoughtfulness.
EVERY person that has sent me a coding book or video.
EVERY person that has emailed me and has been open to sharing their story with me.
EVERY person that has been kind or gracious toward me.
EVERY person that has not been kind or gracious toward me. ( Yes, they have been an important part of opening my thankful floodgates.)
P.S. Don’t beat yourself up if you feel closed off and not blessed. EVERY person, AND experience, good or bad, is going to chip away at the wall you have put up. Your thankfulness floodgates will open once again!
An extension was in order for October’s 12-12-12 project focus on Down syndrome. There was too much important ground to cover in one month.
Andi, mother of a toddler with Down syndrome, asked me to complete individual assignments leading me to a greater understanding of mothering a child with Down syndrome.
In case you have not checked out the previous assignments, here you are…
Before I forget, check out my AWESOME Down syndrome awareness bracelet
The last two weeks I have been working on Assignment #4…
Congratulations, Marissa! You have a baby boy! You need to come up with a plan as how to support his health and development.
Andi provided me photos of my newborn, asked me to name my son, and shared a list of symptoms he is experiencing. She asked me to pull from pre-determined resources and develop a care plan.
My response to the assignment….
WOW! The first thing that came into my mind was…. “How cute is this baby. He is SO cute!” Second… “How will I care for this baby?” Imagine having a chronic illness and caring for a child with special needs.
Complexities arise having a child with special needs. Another level of complexity is added living with a chronic medical condition raising a child with special needs.
I was floored by the numerous areas of focus a mother of a newborn with Down syndrome is required to divide her attention. (It’s important to note: These are the areas I am assuming where my focus should go! )
It’s humbling envisioning mother’s that are facing the reality of raising a child with special needs.
What type of mother would I be?
Would I be the mother that immediately jumps in with both feet, grabbing at every available resource? OR, would I shut down paralyzed by fear?
This line of questioning landed me in the local public library.
SHOUT OUT to my future father -in-law for giving me a ride to the library (Those that don’t know, this vestibular condition has restricted my ability to drive!). Also, thanks to him for signing up for a library card allowing me to check out books.(Oops, I didn’t have a photo ID on hand! A Long story.)
P.S. My heart is full for every mother raising a child with special needs!
Is a hidden disability or chronic illness creating a voting barrier for you this election?
It’s 4 years later, and in 3 DAYS we will have the opportunity to vote in the United States 2012 presidential election.
According to the Rutgers school of management and labor relations website fact sheet.
In 2008 131.1 million people voted, and of that population, 14.7 million people had disabilities.
The voter turnout rate of people with disabilities was 7 percentage points lower than that of people without disabilities.
It doesn’t appear that people with hidden disabilities or chronic illness were counted in those statistics.
Living with a hidden disability I am concerned at the possibility that people with hidden disabilities are not included in these stats.
Allow me to share my 2008 election story…
It was an awkward experience.
I headed to the polls in the evening when the visibility was terrible (bad idea!).
I waited in the lengthy line, and when my turn was up I was standing at the voting booth feeling yucky!
I looked over at the disability and senior section and saw accessible tables.
I walked over to one of the election poll reps and asked if I could use one of the accessible tables. She said something along the lines….
“This is for seniors and the disabled.”
I quickly froze and said, “I have a hidden disability”.
She paused. I blurted out,” I have a balance disorder”.
She looked puzzled, and said “OK,” and let me sit and vote.
I DON’T BELIEVE she was being malicious or obstructive. She was protecting those accessible tables for the disabled and seniors.
People find it to be difficult believing I have a disability. There are no visible indicators. (At the time, I was not wearing prism glasses or using a walking stick.)
The simplicity of waiting in long lines and voting can pose difficulty for someone with a vestibular disorder.
People with vestibular disorders are dealing with vertigo, dizziness, imbalance, spatial disorientation, vision disturbances and a myriad of other symptoms.
I didn’t want to deal with the awkward experience again this election year, so I made sure to vote by mail.
However, I started thinking of ALL THE FOLKS that are reluctant or will not attempt to vote because of chronic illness or hidden disabilities.
I reached out to a few sources and received a response from the L.A. County Registrar-Recorder/County Clerks office.
I want to THANK THEM for their willingness to answer my questions.
Hope you find this information helpful…
If you have a hidden disability, what is the best way to communicate to the polling place that you need to use an accessible table?
We understand that disclosing a disability is a personal decision and some people may not feel comfortable making others aware of it. However, certain level of disclosure is necessary to receive a reasonable accommodation especially if the disability cannot be directly inferred from observation.
When and if voters choose to inform the poll worker that they have a disability, they should do it in a way that is comfortable for them. Some people may feel comfortable with talking openly to the poll worker to request special accommodations and explaining that they have a hidden disability. Voters do not need to be specific on the type of disability they have but they should be clear and specific on the type of accommodation they need. On the other hand, some people may not feel comfortable disclosing in a public setting that they need a special accommodation due to a disability. In such case, voters can hand out a brief written message to the poll worker where they explain that they have a hidden disability and request that they are provided with special accommodations (e.g. using a wheelchair accessible voting booth, a magnifier, the audio ballot booth, etc.).
Is it required that there be an accessible table available to seniors and the disabled regardless of state and county?
We provide accessible voting booths and an audio ballot booth, as well as a number of assistive devices to serve voters with a range of and varying degrees of disabilities. We also have curbside voting. Poll workers will do their best to accommodate voters’ needs when they identify that a special accommodation is needed or as soon as the request is made to them if the disability is not visible.
We try to provide a private and independent voter experience for all voters. We do not provide tables…we provide accessible booths. Tables do not provide a private voting experience for voters. For these voters we have curbside voting.
* I was given an opportunity to sit and vote in 2008, but, based on this response this may not be the “standard” option. I believe I may have been using the wheelchair accessible booth and was given a chair to sit in.
Not everyone with a disability is issued a disability parking sticker. Will the hidden disability voters still be allowed to pull up to the front for curb side voting without a disability parking sticker?
Any voter who is unable to enter the polling place can request to vote curb side. You are not required to have a disability license plate.
Can you explain how curb side voting works?
When the voters arrive to their designated precinct, they may inform election officials of their need to use curbside voting by pressing the button on the curbside call box. An election official (i.e. poll worker or inspector) will respond to the request for assistance by carrying a ballot outside the polling place and providing it to the voter. The voter is then able to make his or her choices in the comfort of his or her vehicle.
Is there a national phone number that the individual can call if they run into disability discrimination and they are not permitted to sit and vote because they “don’t look” disabled?
I was not provided a national number, however, I was given local numbers.
I live in California and here are the numbers for Disability Rights California
North California: 1-888-569-7955
Southern California: 1-888-733-7565
Before or after election day call: 1-800-776-5746
If you DO NOT LIVE in California, and need to report a problem call 1-866-OUR-VOTE
You can find more information via the 866ourvote website.
Find out how your state handles pre-election day voting. In the future I would suggest voting early.
If, you HAVE NOT taken advantage of pre-election day voting options don’t be discouraged. Take advantage of curb side voting.
Helpful links provided by the L.A. County Registrar-Recorder/County Clerks office:
Additional links I suggest you check out (national information)
Disability Vote Project (I was unable to get a response, but the information on the site is solid)
PS: Voting should be an equal playing field, and regardless of ability we deserve the opportunity to exercise our right to vote!