Here's a shout out for Diversity!

For many years now, I have been involved with volunteer opportunities regarding Disability Advocacy. I have served on Boards, Councils and with support groups. I have seen how slowly the wheels of progress and understanding move but I have been able to SEE those wheels move towards a better awareness and understand of the needs, hopes and dreams of people who live their daily lives with challenges.

About 2 years ago, I received a notice through one of the information agencies that keeps me and many other volunteers posted about things happening in the community. The notice was about the formation of The Diversity Advisory Council for the county in which I live. They were asking for volunteers who were willing to represent their different diversities, ranging from ethnic cultural, to children at risk and, those who could represent the disability community. In order to qualify, we were asked to write a short essay on the who, whys, what and wheres of our belief that we should be part of this new experiment in working towards community togetherness. Although I could have chosen my diversity to be that of being a woman, or a Jewish lady or one of the fast becoming elderly, I chose to continue what has become second nature to me, that is to represent the disabled community.

About 6 months went by until I received a letter from the Board of County Commissioners asking me to accept an appointment to the Diversity Advisory Council. I was surprised pleasantly, I thought it would be a great adventure to work with people representing so many different cultures, issues and ideas. On January 5, 2014, I attended my first DAC meeting. It has been an awesome learning experience from understanding how government on the county level works, to learning very quickly that the DAC has much to do and many ideas to incorporate into something that has the ability to provide a space where the community can come and be together, not to have the community absorb the differences but to be able to celebrate them and work together to help us "bridge the gaps" so that we can truly become a community made up of differences that finish the puzzle with everyone needing each other to complete a beautiful image.

For the first 6 months, we worked to create a Strategic Plan, which gave us the framework by which we would work, It was a struggle just due to all the unique issues facing each of the diversities we represent. We spent long evenings "hashing out" the language we needed to provide and the understanding of what we planned to do and how we planned to do it. We developed a mission for the DAC, a budget for the expenses and the formation of 3 specific sub-committees which has become the "machine" that puts it all into action.

As a result, in a few months we will have our first Community Organizations Summit with the purpose being to introduce ourselves to the organizations who work day to day with diversities, find out their needs and ideas so that we can compile the statistics and report back to the Board of County Commissioners along with the DAC's recommendations of how best to provide a better way for all people in the county to work together. Among the groups and organizations to be invited will be a large contingent from the disability community. It is exciting to know that those of us who have seen little goals reached will have the opportunity to now see an even larger potential to provide awareness, as well as, a greater opportunity to become part of the community instead of being on the fringe. I am excited and hopeful about the DAC's vision for the future. The dream is that the DAC will become an integral part of city, county and state governments throughout the country.

The DAC is hard work yet remarkably rewarding as well, it provides hope that we all can grow strong by the contributions we each offer in making our community one that works together for a better present and greater future.

Throughout the country, although not part of government, there is an organization called the National Diversity Council, many state have Diversity Advisory Councils for the purpose of advising and carrying out the mission of the NDC. The more present the disability community can be in these councils, the more our voices will be heard and the needs of our loved ones will be met, please encourage your town and county government to think about the formation of DACs, it is amazing how much can be done when we all work together.

[caption id="attachment_7170" align="alignnone" width="500"] Well known Christian singer, Jessica Bittner and Her two adopted children and a new friend who joined them from the audience to sing. Since then, they have 3 more children added to their little slice of diversity. They are so wonderful to see.[/caption]

Learning to Embrace Homeschooling our Special Needs Child and Why it Wasn't Easy

Our daughter started off her kindergarten year just like every other eager five year old.  She counted down the days until she could get her oh so grown self onto the bus, make new friends, meet her very first teacher, learn to read, and gain that little bit of fly-from-the-nest independence that many children desperately urn for by their fifth birthday.  Sadly, due to her declining health, she could not have all her heart's desires, not in the way most children her age could at least.

We tried our best to make it work.  Though it was not the picture she had imagined from witnessing so many before her enjoy the simple pleasures of attending elementary school, we did all we could to assure that she was able to have as many of the same experiences as possible.  There were still some unavoidable differences; she got dropped off and picked up each morning/afternoon curbside so that we could carefully unload her wheelchair to be sure she had the energy to make it through the day, we had to hire a private nurse to attend with her so that she could manage her vast medical equipment and health care needs, her backpack contained more medical supplies than books, and countless other subtle to large differences that set her apart from the typical kindergartener.  Even with a special plan in place to help our daughter succeed educationally despite the effects of her mitochondrial disease, our local elementary school only had the pleasure of knowing our daughter for two months before those options were no longer enough to maintain proper education in a safe environment for her.   She was absent, more than she was present due to frequent hospitalizations and illnesses.  She simply became too sick to attend school.

At that point it was clear the only choice for her was to be homeschooled, so that is the choice we had to make...

I would be lying if I said it was an easy choice to make.  The road to acceptance was long and difficult with many bumps along the way.  Homeschooling our daughter was not something that had ever crossed our radar as parents.  Not only had my husband and I both gone through the public school system to achieve our educations, my husband also spent years obtaining a postgraduate degree so that he could teach within the public schools.  It was very far outside the boundaries of our comfort zone, and something that we just had never chosen to put much thought into.  We had no problem with the concept of homeschooling itself or others who had chosen it as their children's educational path, it was just not something we expected, and because it was not something our daughter initially understood or wanted for herself it made it all the harder to embrace. The inability to help her succeed in public school, and what at first felt like a forced decision to homeschool honestly just felt like one more thing that her disease had taken from her, when in reality we were looking at it from all the wrong angles.

There were many days in the beginning that I felt as though I was failing her.  As she would sleep the days away unable to be alert and present for lessons I neglected to see how we could benefit her any more than her previous educational arrangements.   Though I knew that it was her body that was failing to support her and not me, I often lacked the courage to assure myself I was good enough to make it work.  I eventually realized that was my main fear when it came to the decision of homeschooling all along; feeling solely responsible for the possible downfall or success of our daughter's education.  We would no longer be the supportive educational role, but the single players in such an important part of our daughter's life, and while that control might be some family's reason for choosing to homeschool, that created an intense fear in me that kept me from being able to fully embrace it.

Our little girl is now in third grade.  The decision we made, with the gentle guidance of our daughter's physicians, to teach her at home was one of the hardest we have had to make for her.  What has made it easier over the years is seeing all of the; educational, physical, and emotional benefits unfold for her as a result of it. She has made academic progress we were unable to attain while she was simply too exhausted in a classroom setting with teachers who were unable to give her that one on one attention she needed to learn. We have the ability at home to work around her, which is nearly impossible in a public school setting.  She sleeps when she needs to, and we school when and where she is able.  If that means we are doing lessons on the Ipad from inside her hospital bed, then that is where we do them.  Although we cherish the days where we can break out into the fresh air or get down and dirty with hands on activities we know those are blessings that we can not take for granted.  We never know what the days will be like for her.  While I had no original desires to become a teacher, I had to, for her.  It has been both an exhausting and very rewarding journey to say the least.

I will admit there are days when I still grieve over what feels, at times, like the loss of a dream. The ebbs and flows of emotion are like waves upon the shore; sometimes silent and gentle, other times roaring loudly and knocking me clear off of my feet.  It often comes on strongest when she is too sick to homeschool. She will sleep the day away curled up in a ball; her curriculum opened and ready, untouched on my desktop, with lingering hope that we will be able to complete another necessary day of learning.  There are days where I find myself reading chapter books out loud from the foot of her bed, stroking her delicate skin, hoping that maybe, just maybe she can hear my words and process even the smallest bit from her much needed sleep. Sometimes I question if I am really doing that for her, or for my own reassurance that we are doing all we can.

Today as I sat there again at the foot of her bed,  reading chapters to her softly drawn eyelids I paused a moment just to take her in.  Before I could even begin to start questioning myself, or our choices I gave her hand a gentle squeeze.  I know we are doing the best we can, and I know we are doing right by her.  The little girl who struggled to recognize the letters in her own name, can now read, she can write, and though she had the unfortunate circumstance of inheriting her grandmother's math phobia, I know we will get through that together too.  When you look at where we came from and where we are now I know we are already responsible for her success, together.

Adapted from "Embracing our Path to Homeschooling," originally published on Learning to Let Go; A Different Dream for Us

Obtaining a Second Opinion

Sometimes in the course of life, whether for special needs or not, we need to obtain a second opinion. Whether for ourselves or our children, it can be hard to know where to start. I took Jaxson to Dallas at the beginning of January, and it took months of research and planning. I wanted to pass on some knowledge I learned during that process and hand out some tips for those that need to travel out of state. For the purposes of this post, everything will be related to your child.

The first thing you need to ask yourself is what you want a second opinion for. Does your child have a diagnosis that you question? Is there a doctor recommending surgery and you're looking for other options? Have you heard of a fantastic doctor who specializes in kids like yours? There are a number of reasons to seek a second opinion, so be sure you know what you want to answer before you start. For us it was easy; we just had to wait on Jax to stop having surgery so I could make plans. Since Jaxson had multiple skull surgeries in his first two years, we knew we needed a craniofacial specialist.

Once you know what you need, do research (if you haven't already) on what typical treatments for this diagnosis will be. You can look up non-profits that fund research, organizations designed to support, and use the National Institute of Health website to gather the information.

Next you can start looking up doctors and hospitals that specialize in your area of need. If you aren't on any Facebook groups that link to what you need, start there. Facebook is not just a great way to network and find people who understand you in situations where others don't, but it's a great place to learn. When you are in a specialized group, you can find support and give support equally, and others are happy to share their experiences with various doctors and hospitals. Once you get a few names, do your research. Google every doctor and hospital and see the reviews, check out recent articles in medical journals, ask other parents you know who are in a similar situation and may have heard the names. You'll want to make sure that the doctor you seek is associated with a known board and that the hospital is ranked well among its peers.

When you have the search narrowed down to the doctors of your liking, it's time to contact your insurance company. Start the process of seeing if your insurance will cover a second opinion, especially if it is out of state. Because Jaxson is on Medicaid, nothing out of state is covered, which I was happy to know well in advance. If you find out that your insurance won't cover part or any of a second opinion appointment, go back to those non-profits and organizations you looked up before. I was able to obtain assistance with a hotel and airfare through the Children's Craniofacial Association, and I know they would have helped with other expenses had we needed it. They required a simple application and a few documents to support our need and that was it. They were very easy to work with, and I like to think that other places that offer such things operate in a similar fashion.

While you're working with your insurance company, go ahead and contact the doctors you have selected and find out what they require to obtain a second opinion. Every doctor requires records, of course, so make sure you have copies.

Electronic copies can sometimes be accepted, so you'll need to create a zip file or use Google Drive in order to send them. I was lucky enough to find a doctor who was willing to email with me initially, and after many back and forths, I was able to determine that we needed to go see him. Most doctors will not do this, and I admit that I was very fortunate in this instance, but I found it by doing a Google search on a name given to me by a friend on Facebook. Turns out that we went to see this doctor, and I also admit that his office staff is second to none, including the staff we see on a regular basis, whom I absolutely love. That's something that I put a lot of stock in when looking for a doctor, if you don't have a happy staff then something is wrong! And these ladies aren't just happy, they are efficient and they follow through. Also very important in my opinion.

After you have gone through this process, you've weighed the pros and cons and you've determined that you want to go through with the appointment. The hard part is done, the next step is to actually make the appointment. Make sure you set it out far enough that your finances won't be strained. You want as much time to plan and save as possible! Once the appointment is made, you can begin your flight and hotel search.

My New Normal

The first 2 years after the birth of my daughter were extremely dark for me. I had moments of joy, but most of the time I was hurt, angry and jealous. I would see a mom and daughter in the store shopping together and start to cry because I could not take my daughter to the store with me. I would hear a mom complaining that her child is not walking yet and he/she is already 14 months. I would be filled with anger at this mom, how could she complain when my child will likely never walk. I would be hurt when my friends and family would leave me out of things since they knew I could not leave my daughter's side. Rather than letting me decline an invitation, no invitation was offered. I would hurt for my daughter. I wanted to give her the full life that I had spent 9 months imagining while I was pregnant. I would give up my ability to walk, talk, eat, breath if I could give it to her instead. She was so innocent and so pure, and yet she was being punished for no reason. I was angry at doctors, at God, at myself, I was angry and hurt all the time.

Around her second birthday we moved back to my hometown where I had family and more friends that I could lean on. We also finally got a regular scheduled nurse to start helping out. Eventually I was able to get out and do things for me. The darkness was starting to lift as I found bits of my old self shining through. Anytime I would tell my daughter's story (our story) it was as if I was living it all over again. I could hear the monitors in the NICU beeping, I could smell the alcohol wipes prepping for blood draws, I could taste the watered down fruit juice that I drank to try to produce more milk for pumping, I could hear the suction machines, the breathing of the ventilators, it was as if I were still sitting in the uncomfortable rocker next to her isolette in bay 8. I felt like I was going crazy. All of my friends and family wanted to hear the story, but I was not able to tell it without completely breaking down.

I somehow found my way to a local organization, Texas Parent to Parent. In my irrational state, I signed up to be a mentor to other moms. I was not qualified for this role, but I am so glad that I went to the training. As we went around the room each mom told her story and how they found their way to the group. I was one of the last to go. I sat and listened to each story and felt envious of each mom. I would give anything to have their problems. Their children were medically involved, but they could smile, they could breath, many could even walk and talk. Then it was my turn to share. As I had done a thousand times before, I tried to tell my story. I was a mess before I even got half way through. I could not hold back the tears and felt like a complete fool breaking down in front of everyone. I was here to be a mentor and as it turned out, I NEEDED a mentor.

At the Texas Parent to Parent training I learned about the Stages of Adaptation. I learned that my feelings of jealousy, anger, etc were all normal. I learned that what I needed to do was to grieve. Grieving did not make any sense at first. Why would I grieve, my child is alive? I realized with the help of these new mentors in my life that I am not grieving my living child, I need to grieve the life that I had imagined. The life I spent picturing for 9 months (or really for my entire childhood). The life I envisioned for my daughter, and for me as a mom, was very real. And that life is gone and needs to be grieved. My obsession with getting pregnant again, even though I knew I could not physically have another baby nor did I have the time, resources, etc for another baby, was normal. That was my subconscious way of trying to recreate the birth and early fantasies I had lost. Once I knew why I was feeling the way that I was, and I knew I was not crazy but just a MOM, it helped me a lot.

A year or so later I realized that there were reasons all of the memories were so vivid each time I told my story. I was suffering from PTSD. Just like the original idea of grief, PTSD also seemed completely out of place. PTSD was for soldiers in war, not for moms. As I learned more about PTSD I realized that it was in fact what I had. Many parents that go through a trauma like I had with their child (it does not have to be at birth- but often is) will be so scarred from that trauma that PTSD is very common. The same neuro receptors and chemicals are involved regardless of the nature of the trauma. I as a mom watching my child go through all that she as gone through, and going through many medical issues myself was traumatized. Much like a soldier that sees unimaginable sights at war, I saw unimaginable things in the NICU.

Many of us may need to see a psychologist or psychologist to help work through our feelings. Many of us may need chemical interventions to help get through this process as well (I do not mean to self medicate- I am referring to chemical interventions prescribed by and monitored by a licensed medical professional). There are some great resources to help find a good therapists in your area, and there are many that specialize in treating caregivers. Not only do they treat for PTSD, depression, anxiety, and the other things we often expect with extreme parenting, but they also treat things such as caregiver burnout, and grief at the many different stages. There is sometimes a stigma attached to seeing medical care for physiological issues, but if you need this care PLEASE call someone. There is no shame, and asking for help does not make you a bad parent.

Once I was able to work through my feelings and better understand what I was actually feeling I was able to get to a much better, much brighter place. I eventually even made it to the point where I can now be an effective mentor parent. I still have bad moments, days, weeks, but I am able to get through these dark places and back to the light much quicker now. It takes a lot of work and I rely heavily on my amazing support team (especially my husband). I have a new life now- a new normal. It's easy to get caught up in the things I wanted to do or can't do. When I start to go down this road sometimes I allow myself a little time to be sad, but ultimately I remind myself that each day with my daughter is a gift and regardless of what can't be done, there are SOOOO many things that CAN. We have learned to not sweat the little things; we have learned to live each day to the fullest; we have learned to celebrate EVERYTHING, and we have learned to ask for help. If you had asked me 10 years ago what I expected to be doing today I would never have guessed that this would be my life. Of course I would still trade everything if I could make my daughter healthy and to give her an easy life. That being said though, I am happy, I have found my joy and her name is Casey. Everything I do, I do for her.



I expect many of you reading this can relate to the feelings I describe. Please know that you are not alone. We are all in this together. Seek help, join support groups (like Mommies of Miracles) and allow yourself time to grieve. It's an amazing journey and rewarding in so many ways. There will be dark days, but you can do this!