Create Change With Simple Gestures!

We live in a time of social expression, but very little personal interaction.  We reach out through texts and social media platforms, but it almost becomes alien to reach out a hand to someone who needs us.  As we experience an explosion of technology that transforms from moment to moment, we work so hard to keep up.  Unfortunately, in the process, we lose a bit of our humanity as well.

As we tune out the world around us to embrace the one in our phones and tablets, it becomes easier to look past the homeless person on the side of the road.  We find it easier to judge people online, and that judgement can become bullying.  We see tears as cute emojis, and we begin to lose the compassion that made us human.

People struggle with depression, post-traumatic stress Disorder, Bipolar Disorder, Anxiety, and so many other mental illnesses, but do we see them as a person, or a label?  When will we finally realize that we need to come together to remove the stigma around mental illness, and open our hearts to the person who is diagnosed.  In fact, we are more willing to rally behind individuals with cancer than those with mental illness.  Why can’t we just support those who need us, whether they are physically or mentally ill?

It is time to put down the phone, even if it is just for a moment, each day.  Take that time to make a difference.  You can inspire someone who is struggling, listen to someone, smile at others and make eye contact, volunteer, donate time or money, let someone know you care, or any gesture, large or small.  Just one small act of kindness can create a ripple effect.  If you have time to send a text, you have time to make an impact.

 

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Advocacy Blog Series: Parents as Advocates

I think it is crucial to discuss the aspect of advocacy that blends into the role of parenting.  When a child is born, the parent is automatically the advocate unless the child is a ward of the state or another family member.  There is an instant responsibility that goes deeper than basic care and devotion.  Every time that child has a problem, is ill, needs supportive services in school, requires a legal guardian for sports, or anything else, the parent falls into the role and becomes the child’s advocate.  Some parents take to this quite easily, and if they are lucky, they will make it through the 18 years of guardianship without a hiccup.  However, it is likely that something will happen.  The child will probably be hospitalized at some point, they may require counseling for depression or more severe mental illnesses, they may be a victim of bullying or abuse, and they may have a physical illness.  It is almost guaranteed that a parent will face at least one serious issue where they must advocate for their child.

What does this mean?  It means you must be willing to be informed, to question, to learn, research, have sleepless nights, make tough decisions, and do whatever else may be necessary to help your child get the help they need.  The system, whether educational, medical, state, or judicial, should be there to support you and your child as well, but things can go wrong.  Even the people working in the system may make misinformed decisions, stereotypical assumptions, or mistakes.  This is why it is so important for parents to put the extra effort in.  here are a few examples:

When my son struggled with mental health issues that threatened the safety of my family, we had to research his conditions, understand the medications, seek residential care, and fight the doctor who attempted to place him in a group home where he would have ended up in the state system.  It was not easy.  In fact, most of my days were spent researching, making phone calls, or sending emails.  The one truly important lesson I took away from this situation was the need to document everything.  When the doctor was acting unethically, I began to copy very detailed emails about his plans and our concerns to people in the government, at the top of the insurance company, and advocacy agencies.  This had a major impact, all info was documented, and he was fired.  We were able to get my son into a facility that was able to help him.

When my daughter was diagnosed with Hypoplastic Left Heart Syndrome, we were shocked at first.  Thankfully, I had an incredible woman at the hospital who was an advocate for me as I tried to get my daughter on SSI.  It was a nightmare, and I had suffered abuse over the phone from my local SSI representative.  I was not strong enough at this point to fight, but this woman helped me, she fought for me, and was a perfect example of why advocacy is important.  After I grew stronger, and did some research, my life became about doing everything I could to care for my daughter.  My husband and I were proactive, we kept medication logs, medical records, notes, and anything we could to help track her care between surgeries.  This was another example of the need for documentation, but also the realization that outside help from an advocate can be incredibly helpful.

Finally, in the educational arena, we have had to work very closely with my son’s schools to accommodate his disabilities.  He has had an Individualized Education Program (IEP) since he was in kindergarten, and it was very useful.  For a parent, it can be confusing at first, but there are a few things you can do to help.  First, read the school’s handbook, next, research IEPs, and look at specific state regulations.  Pay attention to your child and how he/she learns, responds, calms, or reacts at home.  Take notes on a regular basis about things that help and things that do not.  This is information you can supply in IEP meetings.  The more knowledgeable you are about the school system and what accommodations can be made, the better you can be at advocating for your child.  You also need to be open to recommendations.  If something doesn’t feel right, say no, but listen to reasoning first, and do not be afraid to ask questions.

These are only a few examples, but they truly express the ones that stand out to me as learning experiences.  Every parent will need to step into this role in some way, and some more than others.  Do not fault yourself for mistakes, or feel guilty when you miss something.  There are handbooks everywhere, but none that can truly guide you in your specific situation.  As an advocate, it often feels like the weight of the world is on your shoulders, but if you reach out for others, you may be surprised at who is there, and who has been through similar experiences.  Please feel free to share your experiences.

Advocacy Blog Series: Narrative Medicine

So what is Narrative Medicine, and how can it help in advocacy?  Continuing from yesterday’s post, I want to explore the communication gap between medical professionals and patients or caregivers.  Unfortunately, there are many cases where a patient or caregiver is afraid to speak up or not sure how to speak with a medical professional.  They may feel ignored or mistreated in some way.  This is not always the professionals fault.  In fact, the burden is often carried equally due to miscommunication, lack of knowledge, or because of other issues.

In my experience as a parent with two sick children.  I have had to be a strong advocate for them.  There were many instances where I was ignored because the professional did not feel I knew or understood my child’s condition.  In fact, my daughter’s heart condition required extremely low oxygen saturation between her first and second surgery.  If her oxygen was turned up, it could flood her lungs and cause serious problems.  One nurse came into her hospital room and attempted to turn up her oxygen when she saw how low her sats were, and I had to assert myself and my knowledge.  She did not want to listen and I demanded she go read my daughter’s chart while I turned the oxygen back down.  Needless to say, she did apologize and a note was put on the oxygen control to warn anyone else.

I had some other problems with incorrect medication dosage, but for the most part, the professionals I worked with were incredible.  In fact, at Denver Children’s Hospital where 3/4 of my daughter’s hospitalizations were, we had doctors who listened and stood by us.  My daughter’s cardiologist always remembered her and us, and that personal touch made me feel like he saw her for the little girl she was, not just a patient.  This is not always the case.  Many people have different experiences.  Professionals are pushed harder to get patients in and out as quickly as possible.  Technologies are introduced that make fields a drop down box and tale the personal storytelling out of patient care.  This is where patients begin to feel alienated in a sterile environment and professionals feel analytical instead of connected.  This is why narrative medicine can help.

Columbia University is the pioneer of the narrative Medicine program, and I highly recommend a visit to their site.  The work they do is incredible and it was headed by Rita Charon.  You can watch her YouTube video below.

In my own Narrative Medicine class with Gillian Pidcock, I learned a great deal about the process and how beneficial it can be for various people.  As a person who wishes to be an advocate and a writer who helps parents and caregivers with sick family members, I see how this process can benefit me.  In health advocacy, often stories of trauma are held onto.  We keep these stories in when they need to be born into the world.  If we can help our patients find a way to express what ails them through writing their narrative, we can lessen the heavy load they bear.  If we can help medical professionals let go of the clinical side of their job and connect to stories where they were challenged by a situation or where they felt the humanity in what they do, we can help professionals connect to their patients a little more.  We can also help people let go of the stress these stories contain.  Narrative Medicine can benefit patients, caregivers, family members, professionals, and anyone else who works in this field and more.

As an advocate, think about the ways narrative can spread.  If the medical field can benefit, so can social work, law enforcement, psychology, and so much more.  As humans, we want to open up, share our stories.  It is natural and beneficial to do so.  Please share any comments you may have on this important subject.

Advocacy Blog Series: Advocacy Defined and Explored in Health Care

We hear about advocacy often, but how can we define it?  Advocacy is a part of various careers, and can become a massive part of one’s personal life.  The simple definition is the way in which a person influences others to take up a cause, support a policy, or help with decision making.  Advocates work in social work, politics, law, public relations, policy making, education, medical fields, and many other fields.  Advocates can be the ones standing by children who have been abused as they walk into a courtroom, they may help special needs children get the educational help they need.  Mentally ill individuals rely on advocates as they face treatment, juvenile offenders need advocates as they face the criminal justice system.  The fact is, advocacy is everywhere.  It is a part of society as we seek to help those who need help.  Some advocates are removed from the situation, but help to write the laws that will ultimately protect individuals.  Some are inspired by an experience in their lives that helped them to see what changes were needed.

Why is advocacy so important?  It is important because many systems are broken.  As the world continues to grow, technology advances, and societal expectations change, more individuals begin to see the need for change.  Because everyone is different, one person may prefer the hands on work with individuals who need their help, and others may prefer to lobby and become an activist.

I have seen many systems that need change, and I plan to work in advocacy.  However, I am still trying to determine how I can best make a difference.  I love to write and plan to write a book to help parents with sick children to become advocates for their children, but as I have moved along in life, I have found even more battles that need to be fought.  I have found the medical system to be broken for both physical and mental health.  I have seen my parents as caregivers struggle to get the correct care for our loved ones.  I, as a mother to two special needs children, had to fight the system.  This should not be the case.  Parents and caregivers have enough stress, and the healthcare system  is supposed to make people better, not worse.  The bigger the divide becomes between caregivers, patients, and professionals, the more the care is affected.  Humanity seems to be a thing of the past, and I am finding that I wish to fight for better communication between these two sides.  How can a bridge be built when the funding is supporting a bigger gulf.

This is a topic which is finding its way into more places from blogs, to news, to a whole field at Columbia University called Narrative Medicine.  People do not want healthcare to continue on this path, they want to connect to professionals.  Many professionals find that they do not have the time to care for patients like they thought they would.  If both sides are unhappy, the system is not working, and people need to rise up to initiate change.  Like any great battle, it does not happen quickly, it must be fought from various angles, and this is why more people need to become advocates.  More people need to be strong, and stand up for their beliefs, their loved ones, and themselves.  I would love to hear others comments about this issue.

Control and the Caregiving of the Mentally Ill!

I have not spoken about my son on here yet, and it is time that I do.  It can be difficult to speak about the caregiving that goes with caring for a mentally ill child because mental illness has become a dirty term in our society.  While we speak about the needs to pay attention to mental health when someone kills themselves or someone shows signs that were ignored and people die as a result, we never really confront the lack of care.  We do not consider how families struggle with the various perspectives people have about mental health.  My son is mentally ill, and I have spent time wondering who I could talk to because I do not want them to think I am a bad mom or we are a broken family.  Are we broken, sometimes it feels like it, but we manage to piece ourselves back together.

My son has had various diagnoses since the age of 4.  We know for sure he has ADHD as he flaps his arms, has rapid thoughts, and cannot focus.  This is just the the beginning.  He has social issues and has been put in the autism spectrum umbrella.  He has also been labeled bi-polar, but that label has been removed.  He also has oppositional defiance disorder.  The last one is difficult for me as I think it is basically a child refusing to do what they are supposed to do.  He definitely has that, but I do not believe it is a mental illness, I believe it is a choice.

The past two weeks have been a nightmare in our home.  My son was doing well, but his grades continued to drop.  He was grounded from electronics and found ways around parental controls, but he was doing well compared to what we consider to be not well.  We put increased pressure on him by taking away his ereader since he figured out how to get through parental controls to access Facebook and have inappropriate conversations.  We thought we were winning as we took more and more control, but he pushed back…hard.

He has now refused to do any assignments over the past two weeks, he has not participated in classes, and he has earned 8 after-school detentions and an in-school suspension since then.  He has made it clear that this is his choice, and he said if we took him to the therapist, he would not participate and would waste our money.  At this point, he was 3 weeks into the new marking period, and all of his grades except one, was an F.  One was a 60%.  His lowest grade was a 7%.  This was what control led to.  The harder we pushed, the harder he pushed back.  This is when we stopped and gave him control.  We let him know his choices.  He could repeat 10th grade, end up in juvenile detention if he continued down the more defiant path, residential treatment again if he refuses to participate and does not work with his therapist, or he could take responsibility for his actions and turn things around.

Surprisingly, he started to make positive decisions today, and while I am afraid to get my hopes up, it shows that sometimes we need to relinquish control to find the best outcome.  This can be difficult for caregivers because we hold a lot of responsibility.  We are used to doing everything, but when we have to let go, we feel out of control.  I think this is especially true in cases of mental illness because there is so much we have yet to understand when it comes to mental illness and we already feel out of control.  This type of illness affects the whole family, and can be devastating.  It can take over your whole world, make the entire family dysfunctional, and cause a great deal of stress.  I have struggled to handle the barrage of turmoil while still maintaining my college coursework, my job, and my leadership roles.  I managed, but how many caregivers of mentally ill individuals are suffering and afraid to ask for support because they are afraid they will be judged.

It is time we open our hearts and recognize mental illness for what it is, an illness.  We should not make people who suffer through depression, bi-polar, and the many other conditions out there, feel as though they are abnormal.  We should not make families feel like they have to hide their mentally ill relatives or children because that makes it appear as though it is shameful.  We should be having a discussion with one another about how we can help the mentally ill and their families.  We should be trying to understand these individuals because they deserve to be loved and accepted for who they are, not for the image they present to the world.