Back to School Time Already

Hard to believe summer is almost over and kids are just about ready to head back to school. If your kids are anything like mine, some are excited to go back and others not so much.

I have one child starting a new school this again this year and I have tried throughout this summer to make it something exciting and a good thing for him. He is actually excited for this school year which I am thankful for. I have been trying to get him on a school schedule for his sleep but as we all know that is so difficult when it is still so light outside at 8 p.m. We also found out that his school will be giving all the kids free breakfast and lunches this year. That is such a big help to us. He is going to the open house and can not wait to meet his teacher and see the school and his classroom. With his dad being gone right now it just makes me happy to see how much he has grown and he has learned to handle things even if he does not necessarily like that he has to do them. He has his backpack all ready to go and even has his outfit picked out for the first day.

Then there is his brother who should be excited this year since it is his last year of high school!!! He has never been a morning person though so school is always tough. It is hard to believe this is his last year. I still remember taking him to kindergarten. You wonder where the time goes. Since he is not excited at all he still has not bought anything for school. No backpack, no pencils, and not even a notebook. I think he likes to drive his mother crazy waiting because I like to organized and have everything done and ready. He waits until the last minute or after and then maybe he will do it. Some things will never change.

This school year is just different somehow for me. I am glad they are going back to school and that at least one of them is excited but yet it is a little sad this year too because another child is growing up and as much as you want them to do that it is hard to let them go. I hope they have a great year!!!

SMA Awareness Month

Spinal Muscular Atrophy Awareness Month is a public health and awareness campaign focusing on the leading genetic cause of the death in babies younger than two years of age. It is for increasing awareness of spinal muscular atrophy including the availability of carrier screening. Spinal muscular atrophy affects all types of individuals from different ethnic predilections. In many cases, there is no prior history of the disease and the newly born baby with SMA appears normal and healthy. However, over time, the lack of muscular development becomes debilitating. On the other hand, intellectual development is normal. The muscle weakness usually leads to respiratory failure and general failure to thrive.

There are 3 types of SMA with different degrees of severity. The problem is that there are only limited treatment options available. About 1 in 40 individuals are not aware that they are carriers of the recessive gene for SMA so genetic screening for couples who want to get pregnant is the best option for preventing it.

The American College of Medical Genetics believes that all couples who are planning a pregnancy should be offered SMA carrier testing. This is in order to give families enough time to make informed decisions when it comes to reproduction. However, the American College of Obstetrics & Gynecology still has not made a formal statement in connection to SMA screening. Thus, there are varying practices among physicians with some offering it and others not offering it.

The purpose of Spinal Muscular Atrophy Awareness Month is to raise awareness of the deadly disease. This includes informing the public that SMA genetic screening is available and this is the best prevention. It is also for strengthening the fight against the deadly disease and supporting research for the purpose of finding a cure. It is also a time for supporting individuals suffering from the disease along with their families who suffer with them.

According to parents of children with SMA, the experience changes them forever. Their strength and courage is continuously tested out of love and devotion to their children. However, emotional and financial stress cannot be avoided. In fact, the cost of caring for a child with SMA is in between $260,000 to $3 million. This points to the importance of knowing your risks ahead of time by undergoing SMA screening before you get pregnant. For Spinal Muscular Atrophy Awareness Month, think about your family and friends who are planning to start a family and give them a reminder to asking their doctors about SMA screening. More importantly, to honor of those who have suffered because of SMA, help spread the word.

 

Walter’s Success Story

On a cool September day Walter entered into DCIL, homeless. He had been referred to us by Social Security for our Representative Payee Services.  Walter had been living at Ruth Meier’s Drop in Center and was looking for housing. He had no transportation.  This once very hardworking, intelligent man was now walking a different road in life; an unexpected road caused by some disabilities he had acquired.

One of the first services he received from DCIL was assistance with filling out a Transit application.

Walter, a pleasant, single man, stated that he was motivated to acquire housing and a job. He chose to be a consumer at DCIL and agreed to work towards the goals that he would set for himself.

In the course of the 8 years that he was a consumer at DCIL, of the 16 goals that Walter set for himself, he completed all of them very successfully. Community based living, transportation, personal resource management, self-advocacy, self-care and learning new technology were a few of the goals he had set and he was always willing to work diligently towards completing those goals. Walter has a strong work ethic and started his independence by working for Command Center. There were struggles, there were challenges, and Walter worked diligently to overcome those by self-determination.  Walters’s successes were many, but he understood that this was all a process.  As he grew to become more and more independent, he always wanted to work as much as possible according the rules set up by SSI.

He was able to move into the Lewis and Clark Building in Mandan where he lived for 8 years as he was rebuilding his life. He was always very grateful for the assistance.  He was determined.  He received assistance from West Central Human Services in Bismarck and Community Action helped him with Shelter Plus Care.

His advocate at DCIL wondered about his family. Walter stated he had a sister residing in Hollywood, CA. The advocate located her on Social Media and after 10 years, Walter was reunited with his sister, elderly mother and family.

While he was in ND, thanks to Medicaid Benefits, he was able to communicate his physical impairments and receive the medical help that he needed, including getting on a vitamin regiment. While enjoying the newfound health, being determined, he gave up smoking.

Through weekly communication with his sister, he has decided to move to Ohio and be there for his family.

Walter, always the optimist, once stated when asked what it felt like to be homeless, “How can I be homeless, when I have the sky above me, and the earth below me?” While visiting with Walter the week before he moved, we asked him, “Where do you see your life going from here?  What goals do you have before you?”  Walter stated, “I’ve done it before, I’ve done it before, I’ve done it before, I’ll do it again.”  Walter, good luck with the rest of your journey we call life.

Always Something New

It seems like when you have any type of disability, just when you think you are getting everything under control and have it together something comes along just to knock you down again. At least that is how I feel right now.

I was doing better than I had in a long time actually. I was staying on my medication for my Bipolar Disorder and it is helping me a lot. I broke down and had to take some extra medication for my anxiety that I had not expected, but with the help of my very good doctor and therapist I realize that is okay. It helps me even the playing the field so I can be happy and live my life. There were still some big stressors going on in my life and we were adjusting my medication which at times made me feel like I had failed because I had been doing so well for so long. I had to realize that there will be times I will have to adjust it because your body gets used to it and it does not do the job it is supposed to do. I am not a failure for that. I would be failing if I did not adjust it and just tried to live with my life on the same dose or with no medication. I would eventually go back to the big ups and downs that had caused so many problems before. That is not what I want.

So in December  when I ended up in the hospital with blood clots in my lung I really just broke down and did not think I could take anymore. I was very scared I would not be here to see my kids grow up because I had lost two cousins to blood clot issues. I was very terrified. My youngest son would bring me a little toy every night when he came to visit so I would not get lonely and my other son just gave me a big hug and told me I better not die on him. I know they were just as scared as I was so I had to show them I was not leaving them yet. I was very lucky I went in when I did and I am still here today and I am so grateful that I am. But no one prepared me for what life would be like after that. I did not think it would affect me so much.

I can handle being on the blood thinners for the rest of my life if it means it will help keep me here on this earth. At first they made me tire out a lot easier and I bruise a lot easier but that is okay. I have felt really bad this summer for my kids. I love summer. I love the heat and the warm sun. Now though, when it is too warm or humid my legs hurt so bad that I start to feel sick and all I can do is try to cool down and put my legs up. It makes me feel like I am being a bad mom sometimes. Then it starts making me feel down and I do not do the things that I know help me to stay well mentally. Things like writing or even just coloring with my son. Watching him play in his little pool. As my legs have bothered me a lot this summer I have had to have the boys help me a little more and that depresses me. But they like being able to help mom and sometime they even ask if there is anything they can do even when I feel good.

So now they laugh at me when I say it is too hot in the house because I am the one who is usually too cold all the time. My youngest son has become my best walking buddy and really pushes me that way. I am trying to find positives out of all of this because it seems there is always something new happening just when I think I am getting control of my disabilities. I am starting to write again since I have lots of time when I have to rest my legs and I am getting to spend nice quality time with my kids. Hearing them laugh and fight is something I will not take for granted. I am doing my puzzle books I love and listening to my son read to my and teaching my other son to drive. I get to see my granddaughter through facetime which is wonderful. I may miss out on somethings but I have to look at the big picture. I can feel my children’s wonderful arms around my neck giving me hugs and hear them tell me they love me. I just have to take things one day at a time. To remember there are many beautiful things in this world if you just take the time to look. There are even beautiful things within our disabilities.

IMAGINE

Take just one moment and imagine with me, a life like you never dreamed of. What does it look like? Pause….

Do you live in a castle with servants at your every whim?

Do you live in a beach cabin that you own, no payments, no worries, just swimming, laying on the beach or surfing all day?

I know…you live in a cabin in the mountains. You are perfectly safe and hardly a neighbor within a few miles. Imagine the smell of pine and cedar when you walk out in the morning, the sound of the water from the nearby river splashing against the rocks in the gentle breeze and then in the evening, the smell of the wood burning in the rock fireplace.

Well, none of these scenarios are exactly what I was thinking of when I asked that question. I was thinking more like: what if one of your very first thoughts every morning was, ‘oh, that’s right, I can’t feel anything from my waist down.  I was just dreaming I could walk and I could run, but although my mind says I can, my body tells me different.’

Or maybe if you can imagine with me for a minute, waking up every morning knowing that the depression that pretty much debilitated your life yesterday, made you feel hopeless, an inability to construct or envision a future, could find its way back again today. Even with the meds, there isn’t much you will be able to do about it, except fake the ‘happy’, ‘normal’ person until your mind just won’t allow it any longer and again the enemy of your mind wins another round of the battle.

There are a wide range of disabilities,  such as depression, autism, cerebral palsy, chronic pain, rheumatoid arthritis, visual impairments, hearing loss, speech disorders and on and on. Can you believe that 56.7 million people live with these disabilities every single day of their lives, and this is in the U.S. alone? Can you imagine living your daily life with a disability?  Can you even dream of what it would be like?  I don’t think many of us imagine this for ourselves.

We have many of our own neighbors here in Bismarck, ND, that daily deal with these and numerous other disabilities. What are we doing to help them to have the same quality of life that we are able to enjoy?

We are coming up on 27 years since the passing of the Americans with Disabilities Act. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else has. The ADA gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.

Now let me give you another challenge.

Imagine yourself for a minute as a person with a disability. What would you want to change about our world so that it would be less difficult to live life like everyone else?  Pause….

Now, change that one thing in yourself, whether it would be an attitude you have or stepping out of your way to make it easier for a person with a disability to enjoy what you naturally get the opportunity to enjoy daily.

The theme for the 2017 Anniversary of the signing of the Americans with Disabilities Act is “Pledge On”. Let’s all make a new commitment to be sensitive to our neighbor’s needs, no matter who they are or what their daily struggles are.  It’s part of being a Community.

Mental Health Awareness Month

 

One in five Americans experience a mental health problem in any given year. Yet many people suffer with their symptoms in silence. The stigma that continues to surround mental-health problems prevents them from getting the help they need.

It’s a common problem I have seen all through my life. People often wait years to seek help. Even though their symptoms are treatable, they were afraid to tell anyone about what they were experiencing or too prideful to admit even to themselves, that they need a little help.

Parents may see signs of depression or other mental health issues in their children, but are unaware of how to deal with them, so they just hope that their kids ‘grow out of it’.

Some people fear that a mental health diagnosis could affect their lives: Will people take me seriously if they know I take medication for my depression? If people know I have anxiety, will they assume they can’t trust me in ANYTHING? Do I need to tell my boss I’m taking medications?

Others worried that people would label them as “crazy”: Will other parents let their children come to my home if I go to counseling? If my neighbors see me in the waiting room, will they treat me different?

Many of these concerns are legitimate, however my philosophy has always been: “We all have our own ‘crazy’! Even if you are doing well, there’s a good chance you aren’t 100% mentally healthy. In fact, the U.S. Department of Health and Human Services estimates only about 17% of adults are in a state of “optimal” mental health. And who is the judge of ‘optimal mental health’?

Despite ongoing efforts to educate the public about mental health, misconceptions remain. Before we can stop the stigma, we need to debunk these five mental health myths:

  1. You’re either mentally ill or mentally healthy.

Similar to the way a physically healthy person may still experience minor health issues—like bad knees or high cholesterol—a mentally healthy person may experience an emotional problem or two. Mental health is a continuum and people may fall anywhere on the spectrum.

  1. Mental illness is a sign of weakness.

Why does society assume people with depression, anxiety, or other mental health conditions are mentally “weak.”

Mental strength is not the same as mental health. Just as someone with diabetes could still be physically strong, someone with depression can still be mentally strong. Many people with mental-health issues are incredibly mentally strong. This mental strength I’m talking about is most admirable because as mentioned above, it is difficult to first admit that we need help and then second, making that a daily choice to live in that new found ‘strength’ does not come natural.  However, anyone can make choices to build mental strength, regardless of whether they have a mental health issue.  I call it, taking captive EVERY thought that enters our mind and then dealing with it in the light of, “is this just something I am ‘feeling’, or is this indeed true?” While ‘feelings’ are not always bad, they can lie to us.  If it is not based on truth, get rid of it.  This is how we strengthen our mind.  We do not need to waste our time on the random things that pop into our minds. Life’s too short.

  1. You can’t prevent mental health problems.

You certainly can’t prevent all mental health problems—factors like genetics and traumatic life events play a role. But everyone can take steps to improve their mental health and prevent further mental illness.

Establishing healthy habits—eating a healthy diet, getting plenty of sleep, participating in regular exercise—can also go a long way to improving how you feel. Similarly, getting rid of destructive mental habits, like engaging in self-pity or ruminating on the past, can also do wonders for your emotional well-being.

  1. People with mental illness are violent.

Unfortunately, when the media mentions mental illness, it’s often in regard to a headline about a mass shooting or domestic violence incident. Although these headlines frequently portray many violent criminals as being mentally ill, most people with mental health problems aren’t violent.

The American Psychological Association reports that only 7.5% of crimes are directly related to symptoms of mental illness. Poverty, substance abuse, unemployment, and homelessness are among the other reasons why people commit violent acts.

  1. Mental health problems are forever.

Not all mental health problems are curable—schizophrenia, for example, doesn’t go away. But most mental health problems are treatable.

The National Alliance on Mental Illness reports that between 70 and 90% of individuals experience symptom relief with a combination of therapy and medication. Complete recovery from a variety of mental health issues is often possible.

Getting Rid of the Mental-Health Stigma

Even though suicide is the tenth-leading cause of death in America, most public-service announcements and government education programs focus solely on physical health issues like cancer and obesity. Raising awareness of mental health issues and debunking the most common misconceptions could be instrumental in saving lives.

What is it Really Like to Live With Mental Illness

Since May is Mental Health Awareness Month I thought this blog should be something about mental health. I had many ideas, but I thought maybe the best thing to do was to just talk about what every day life is like for people who deal with mental illness.

Everyone does not have the same issues or problems. Some people suffer a lot more than others or in other ways. Even if two people are diagnosed with the same illness they do not always have the same issues or same medications. So you can not group people with mental health issues into just one big group and think you can solve the problem. What works for one person may not work for another.

I was diagnosed with Bipolar Disorder and Borderline Personality Disorder many years ago. I also suffer from a lot of anxiety. I fought my mental for so long. I think at first I did not want to accept that I had it. People are scared of it and when you are not yourself you tend to do things you normally would not do. That can be scary and you do not even realize you are doing these things until you are back to a more normal state. Then you have to pick the pieces of your shattered life. Your life becomes this tornado that is just spinning out of control all the time. You are okay for awhile and then it spins downward into this deep depression, that no matter how hard you try, you just can not get out of. When you have finally crashed to the bottom and think things are back to normal you spin out of control again, only this time you like it because you are having fun and everyone likes you. Depending on what you do though, your money disappears and you don’t remember why or where, bills don’t get paid and you crash hard. Most of the time you don’t remember what you even did but you are left trying to pick up your life and figure out what happened. This is the fun of Bipolar Disorder. You never know which one will strike you. I would try medicine for awhile because I was depressed and then I would go off of it. I did not like how felt once I was over the depression. Always in a fog. I felt stupid. I was not going to live that way. But you do not realize how much it turns your world and your children’s world upside down. Your mind constantly going and feels like it is never going to shut off. People would always tell me I talked too fast and I needed to slow down but that was just normal to me. I did not think I was talking fast. I would have at least 3 or 4 different things going on because I could not concentrate on just one and there had to be noise on in the house. I could not stand it to be quiet.

On top of that I have Borderline Personality Disorder. Basically it is where I see things in just black and white. I either like you or dislike you. There is no grey area. It makes relationships hard because I am so afraid of people leaving that I don’t want to let them get close but yet I need that relationship. I am a big contradiction. There is no medication for this but it is a behavioral change and takes a lot of therapy. To this day I still find myself having to work on this. I will find myself doing this all or nothing thinking at times. Then I have to go back and look at all the work I did in therapy and ask myself am I thinking correctly?

When I finally had enough of the chaos in my head and decided to go back on medication for the Bipolar Disorder some interesting things started to happen. I found a good doctor which is key in the whole process. As my mind became clearer I found myself in a place I had never been and I felt more scared there than when my mind was in chaos. I have been on my medication now for 2 years about and I still get nervous that something is just waiting to happen. Every time I am a little manic or a little depressed it does get scary because every day you don’t know if that will be the day your medicine does not work. You try not to think about it that way but it is always in the back of your mind.

The other thing I noticed as I got better was that I had anxiety I never knew existed. It was so bad that I did not even want to take my kids to the park, or go their concert choirs or the circus. I felt like the worst mother in the world. I am still working on this but I can at least do these things now. I have some tools my counselor gave me and some medication until we get things completely under control. But when you see me you would never know anything was wrong.

That is the problem with mental illness. Unless I am having a total breakdown I can hide my symptoms pretty well for a while. I do not always know what I need or what others can help me with. Sometimes we are just too ashamed to ask because it may seem like nothing important. To us it obviously is important. Our minds just do not work the same way as others. A little understanding goes a long way. A shoulder to cry on or just a listening ear is sometimes all someone needs.