Life is not respected.
Tragedy can be boiled down this statement.
If you peel away all the layers when you see stories in the news what is going on? Murder, assault, theft, and self harm. - If life was respected would someone take the life of, or harm another living being with such ease- as a society what would our reactions be- would we watch news reports of these events over breakfast, lunch and dinner with casual abandon?
For just this moment I am going to take all religion out of the equation and state that if people respected life these things would happen much less; We would watch the news and be struck with horror when events did happen. We would stop and share tears and moments of silence like we did on 9/11 - Just imagine if we lived in a culture that was taught to respect all life from beginning to natural end.
Several years ago I stopped watching cable TV. When we moved to Huntersville I decided to not have television programming at all. We do watch movies, but I monitor what my family is exposed to. It has been known for years that violence in the media has a negative impact on young minds. Again I revert to respecting life would we find pleasure partaking in viewing entertainment with violence as a central feature? Likely not, we would react with different feelings because of the respect we have for the sanctity of life. Where does it start though- how did we get to where we are? How do we change it now? As Pope John Paul said we are in a "culture of death."
I have a few ideas, but those are not what this blog today is really about. If I were to start on that platform my intentions for today would be lost. So I will leave the thought in the air and save it for another day- and move along to the real reason I opened up this entry-
If we don't respect life at the basic foundation how we we to expect people to treat the most vulnerable among us? Our disabled and the elderly? The disabled and medically fragile have my heart. Heather Riley is both. Recently I saw a story posted on facebook about two paraprofessionals in Atalanta abusing autistic students. School Administration was told of the problem by the teacher and the teacher was ignored. As I read the article my blood boiled. How can adults charged to protect our vulnerable ignore this? How is is acceptable to ignore allegations of the abuse these children were enduring- Children unable to speak up about the way they were being abused? If you can not handle yourself in a better fashion it is time to walk away for your job and do something else.
Those of you that know us in the "real world" or follow us on FaceBook know the multiple issues we have had with nursing staff for Heather. Many people know I home schooled her for many years as well.Placing Heather into public school was difficult. Trusting someone you do not know with your childs life is difficult enough when they do not have a disability, it is magnified when there is a disability.
I have been heavily criticized by family and even some friends for being (the irony) overly critical of people that care for Heather in different settings. There are several reasons for this. The first thing I should ask is - Am I really overly critical or is it protecting Heather Riley. When you see stories like this one it is easy to understand why I am so careful about who is with Heather when I am not around. Andrew and I both protect Heather and Brittany with a love that is fierce.
For a moment lets talk about what would happen if I did not monitor the actions of staff with Heather. In March of last year when we moved here Heather had a nurse that took her for a walk on Gilead Rd. This is busy street, she became over stimulated and had a melt down. This took place during a period of intense change for Heather. It was not authorized by either myself or Andrew. The nurse just did it, as she wanted to go shopping. She ignored signs that Heather gave indicating she was tired and over stimulated. This nurse (this professional) did not respect another persons rights as a human in order to meet her own selfish desires. As a result Heather did what she knows to do, she had a melt down and lost control. This nurse was injured during Heathers fight/flight response. Heather was handled roughly, fortunately she was not injured and only her clothing was torn. The Huntersville Police were available to assist Andrew and Brittany in getting Heather and the nurse back to the apartment. The nurse was relieved of her duties.In this instance I ignored my gut feelings regarding this individual (because I am hyperaware of my critical nature) and I gave her multiple chances to prove she was a "good" LPN. Unfortunately this was the wrong decision- The list of issues we have had with what should be professionals is long- There are times that staff has been under the impression they were alone in the apartment with Heather but in reality they were not. Heathers sister has been in her room with a migraine, and has heard everything that has taken place. The reports I have gotten have been upsetting. Heather is talked to very differently when some staff members are alone with her. We have had staff members that were simply incompetent. One nurse was administering routine medications while Andrew and I were downstairs talking, Britt witnessed a obvious seizure, the nurse was oblivious to it. She never reacted to all three of us rushing in to manage it. She was relieved of her duties that day (that was not the only issue, she also thought IVIG was given in the g-tube) Still another staff ignored Heathers complaints of pain for an entire shift while her infusion infiltrated into her chest, she reset the pump multiple times due to alarms and error messages according to the days nursing notes. -These same nurses and still some others have talked roughly to Heather out of our presence and handled her roughly.
At school Heather has a wonderful nurse and only minor issues-
When it comes to our special needs children as parents and caregivers we must be diligent and we must make our presence known. We do not live in a society that respects life or the disabled as a whole. Sadly I have lived in a bubble for a long time, leading myself to believe that all people are good and all people love each other and treat one another with respect. I thought until we moved here that nurses could be trusted to give medications according to the MAR. I wish there was a better way to handle this, I wish I didn't need staff to assist with Heather, unfortunately this is something we do need. I pray every day that soon Heather will be able to care for herself.
God has been merciful to us by placing a few very amazing people in her life to lead us and protect her.
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