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Life isn't always a race, its more of a boxing match

Do you ever have those times where you feel like you need to strap on boxing gloves as soon as you step out of bed in the morning, ready to take on the battles of the day? I feel like this has been my life lately and quite frankly, I am tired of it. I am tired of smiling and saying that having a child with Angelman Syndrome has changed my world and that because of her, I have more purpose and meaning. The reality is, yes, my world has changed. Yes, I am fortunate to be able to stay at home every day so I can work out while the kids are at school and be there for them when they get home. What a lot of the people who comment that to me don't know is that most days I am also dealing with the issues that come along with raising a child with special needs. I deal with stupid people... a lot. Seriously, people who just can't do their job or think because I am a mom who doesn't have a career and I don't have a brain worth anything. I try over and over again to put on my Southern sweetness front, but after awhile, I feel like I am going to give myself a concussion for the number of times I want to bang my head against the wall, getting no where.

Two head banging battles that I am currently at my wits end of frustration about:

1. Colorado has a system set up where a parent can go back to school (for a whopping 5 week certificate program that truly numbs the brain's intelligence) to become a CNA. If your child qualifies for home health services and is on the state's medicaid waiver program, you can be employed as your child's home health care worker. This program was created so that people who have dependents with special needs can either work fewer hours at regular job but can be supplemented by taking care of their child since our children can't attend regular after school programs or have a non-skilled babysitter, or are in and out of doctor's offices and sick so often that most employers would frown upon their employee having to take so much time off or work less. So, instead of just having parents of these individuals not work and rely on government hand outs, this gives them the opportunity to work but also be supplemented so that they don't have to pay an arm and a leg for someone to watch their dependent so they can make ends meet.

Great idea, Colorado... in theory. The reality is, we parents are working under a 5 week certificate program "degree" and are treated as such. It doesn't matter that I went to college for almost 6 years or that I don't let having a child with special needs control and dictate every thing we try to do with our lives. According to Medicaid guidelines, all skilled services must be administered in the home. So, if feeding, for example, is a billable service (and with Hayden, every piece of food must be specifically prepared in small bites, can not be put on a plate in front of her or both the plate and food will go flying, must be hand fed and carefully watched to make sure she chews before swallowing for fear of choking or not getting enough nutrients in a sitting). It doesn't matter where we go, we have to take the same care with feeding Hayden for she can not self feed and does not have the coordination to use utensils independently. So, we can not go out to eat and my bill for food prep and feeding if I am not preforming these duties in our home environment. My current employer has been trying for the past 9 months to implement a new system for their CNA's to record tasks performed and specific hours for when they are done using tablets. Previously, we would document our hours and services on paper which I would fill in after Hayden was finally asleep at night and have Dave fax them in every Monday morning. I would have to follow up every week with a phone call to make sure they received them per my company's policy. This is a frustrating way of doing things with a heavy paper trail, but it worked, I suppose. Now, however, they want CNA's to use tablets, which have a tracking device on them so they know if you are not in the house when recording your hours, and log in at the beginning of each session, document and log out at the end of the session. (and still use the old fashioned paper system as well because they don't trust that the tablets may crash and documentation be lost). If you forget to log in or out or are in a different location, you need to call in to let them know and explain why as well as give the physical address for which you are performing services. For a CNA in the field going to perform services at a patient's house, this would work fine. For a parent whose child is active and there is not a minute of down time for when CNA duties end and parent duties begin, this is a nightmare. I was a guinea pig last summer to try out the system. It just didn't work for our situation. When I stopped to take the time to record things, Hayden was into stuff she shouldn't be into or in the mornings if I heard her screaming at 6am, I couldn't remember to go to the tablet, log in, then go to her room to get her. Again, I know people abuse systems and have been caught so systems like Medicaid are cracking down, but if I can't sit in my car and record hours while my other daughter is at soccer practice, or in the evening when I have time to reflect upon the day and the events, then I will be trapped in our house, unable to go anywhere without "big brother" knowing if I am home or not and what I am doing every hour of the day.

Not all home health care companies use the backward systems that my current employer uses and I had hoped that things over time would get better, but it doesn't appear that way, so I decided to reach out to another company that many other parents with disabled children are employed with. I was dreading the process and rightly so. This company pays less per hour, but right now, my brain could care less about pay and more about easier systems in place and more understanding of the role of a parent CNA (and I suppose a bit more respect for what we as parents have to struggle with every day). The company I reached out to has been cordial to work with, but they do question why I would leave my current employer. I get the feeling that they think I must have issues with a certain individual there or have caused problems (remember, I am a person working with a 5 week certification... you can only imagine some of the personalities that work with that job that they have come across over the years). Without divulging too much or wanting to badmouth my current company, I must not have said enough so now they have raised red flags and wrote in their notes, which the HR lady read to me, that it says to contact my current employer to find out what is going on with me, the employee. Seriously??? For one, I didn't think that is legal or acceptable. Talk about raising a red flag to the company I am currently working for who has no clue I am researching alternative employers. Secondly, can you please respect me as a parent of a child with fairly severe needs and that I am just trying to do the best I can do for her and for our family?

I like the company I am interviewing with because they were founded years ago specifically to help and fill a need for services for people who work in the home environment with their own loved ones. The founder was instrumental in passing legislation to create such a system in Colorado. This company uses an app that they created for parent CNAs to document services. They can log in during the evening using their phone, laptop, or Ipad and bill for services rendered during the day. Makes sense, is simpler, and not a single parent I have spoken to who uses this system has any glitches or issues with it. The RN who came out to observe Hayden (who was incredibly active when she was here right after Hayden got home from school one afternoon- which as hard as I tried to focus and speak with her, was challenging when Hayden was in constant movement form) felt that Hayden qualifies for 5-7 hours of skilled nursing services/day. Currently, Hayden receives 6 hours of skilled services. Great, right? -especially if she can receive at least 6 hours and maybe 7 to balance out the loss of hourly pay. The nurse asked me to pass on to Hayden's PT, OT, and Speech therapists a form outlining a request for home exercise programs... things that I do as a parent (or CNA) daily to help Hayden be functional, safe, and achieve goals they have set out for her. The more "services" documented that I do with Hayden on a daily basis, the more justification for 6 or 7 hours of services rather than 5. I thought this would be simple and passed the request on to Hayden's therapists. Instead, I got a call yesterday from the school PT telling me that even though she knows my background is in physical therapy, as a CNA, she didn't feel like she could write out a home exercise program for me to work on with Hayden because she couldn't directly supervise me doing it to make sure I was doing it correctly. She alluded to talking to the OT at the school about her concerns with this too. Can I scream now??? I have been fuming ever since - complete reminder of why I hate some PT's and one of the reasons I left the profession years ago. Get off your ego trip! You are not better than others, smarter, or have more of an elite job. If you were thinking about the child and wanting the child to succeed to the best of her ability, wouldn't you want to have an involved parent who readily will practice skills with the child at home to best help her reach her IEP goals for physical therapy? Whats the difference between that and giving a typical kid math homework where a parent might have to help the child so the child learns a new math skill?

Again, it really all boils down to one thing... respect. While it is great to be able to receive supplemental income for tasks I already do daily as a parent and gives me the ability to not have to take on a full time job just to help pay the bills, I struggle with being treated like I am really on the lowest rung of the medical model totem pole. Our life is tough enough, do we have to be kicked around and made to feel like we are incompetent too?

2. (because one battle is never enough)
We were told about a great summer camp for special needs kids that Hayden could go to. It is a day camp, only about 20-25 min from our house and offers 3 and 7 week options. Special needs camps, of course, are expensive, but both the director of the camp and other parents informed us that the camp is covered by the waiver program that Hayden has. We filled out the applications and reserved a spot for Hayden after sending the camp info to Hayden's case manager and connecting her to the camp director for future inquiries and payment information. A few weeks later, I get a call from the case manager telling me that the camp is no longer covered by the waiver because it is put on by the city of Lakewood and that the waiver (which is a state waiver) does not work with them. She informed me that the kids attending the camp using the waiver must have been grandfathered in and that Hayden would not be. Of course, when I reached out to the camp director, he scratched his head and can't figure out what the case manager is talking about. So, now we are stuck in the middle of a new battle that I never thought I would have to deal with, especially since I did all my due diligence, confirmed with both parties before registering, and thought I had everything in place for Hayden to have a fun summer experience for a couple of weeks in July. The latest update is that a direct payment for camp was submitted today from our credit card (that will be fun to fight to get back), the camp director is meeting with representatives from the Community Centered Board that the case manager works for next week to get to the bottom of this, and I need to look at switching Provider Boards over from the county we were in previously when we first applied for the waiver to the one we are currently in since it seems that the only thing the one we currently work with is good at is telling me no, things are not covered, and no, we have no services in the area I live in now.

This is today's battle. Tomorrow I am sure will be full of different ones (or an ongoing saga of today's). The mom and wife in me lives with daily guilt when I am out biking or getting to go for a long trail run while my husband wakes way before dawn to go to work and the kids are at school with teacher who get paid way to little for all the work that they do. I feel guilty when I look back on the past year and see the hundreds... actually, thousands, of dollars we have spent on training, coaching, racing, bikes, and therapies for me in the attempt to keep this beaten up, worn out 40 something year old body going.

I don't know what life is like for people who have kids who can take care of themselves, who can play with their siblings and share secrets and adventures while mom is fixing dinner or planting flowers in the yard. I get frustrated when people ask me to do things and I can tell they have no clue what our life is really like and can't or don't want to attempt to relate. It is not their job to, I totally understand that. It is just hard because I didn't ask for this life. It is the one that was given to me. I miss being able to use my brain and only vaguely remember graduating from high school in the top 1% of my high school class. Apparently, I was smart back in the day. Now, when people ask what I do, I cringe. I live in an area that is so success driven... parents with their careers, pushing their children (and many living vicariously through them) to be number 1, wanting to be the best at everything -their sport, their adventures, their houses, and way of life. Yes, I am driven, I admit that. But, I am not driven to be Number 1. I am driven to find the best version of myself and test my limits to see what my body is capable of. I don't care if I am on top of the podium and getting older I am starting to deal with and accept (which is very hard for me to do) that my finish placement is turning more into age group placing rather than overall placing, but I do want to know I left it all out there when I finish a race. I do not care if my child is the smartest in her class, the fastest runner, the best soccer player, or can ride a bike technically better than her peers. I just want her to wake up in the morning loving life, wanting to grow and learn, and live at her own potential doing what she loves. (more on that whole topic in another post) Funny how perspective and priorities change when you have a child who did not hit a single developmental milestone on time and whose diapers you still have to change at age 8... Is being Number 1 really all that important in the grande scheme of things?

Enough with the woe is me talk for the day. I know I have a pretty good life and paint a picture in our virtual Facebook world of a happy family loving and embracing this life we have been given. All of that is true. We do have so many blessings, have been given wonderful opportunities, we have love in our home, and are so fortunate to be embraced by so many neighbors and friends and people we only vaguely know through acquaintance. If only our family could love and support us the way both our Georgia and Colorado friends have (again, another post to come about trying to understand why sometimes those closest to you push you furthest away so they don't have to see and feel what it is like to live a day in our shoes)... But I do try to keep it real because that too is life. So, today, you get a little piece from behind the scenes and probably another reason why I fight so hard out there on a race course to overcome the pain, the adversity, and the rocks and roots that I trip over. When I am out there, the boxing gloves come off. It is not me versus everyone else on the course. For those couple of hours, I am not fighting. I am getting to play. I am getting to breathe, to push myself, to remember the very essence of what makes me who I am, and I am free.


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