Anticipating the New Year

As a child, December was a long month of anticipation and wonder. The excitement in the air nearly took my breath away. I felt gloomy when the Christmas season and school break came to an end. The thought of having to wait another twelve long months or 365 days to feel that kind of joy and excitement was dreadful. Many Christmas’s have come and gone and the month no longer brings a school break, in fact it’s just the opposite.

As an adult, December can feel like a month of endurance. At work it’s a month of year-end bookkeeping and preparations for the new year. It would be a busy month all on its own, but throw in Christmas and all the beautiful decorations, sounds of terrific music, pleasure of parties, delicious baking and delightful shopping because everything is on sale. It’s no wonder we feel exhausted, overwhelmed and often get sick.

Forgive yourself

At the end of the year I always suffer with melancholy. As a child, it was because the Christmas season and break was coming to an end, as an adult it’s because I remember the year’s resolutions I didn’t achieve and other unfulfilled expectations. I’m plagued with wondering how I can better plan for the new year and actually complete my goals.

Don't Compare

 

I commit the sin to often  of comparing myself to others and what they have accomplished. I question why I can’t do better. The antidote to melancholy is optimism and I’m giving myself a healthy dose of it over the next week as I prepare for a new year, new beginnings and a better me.

Give ThanksA change of heart occurs when I reflect on the blessing of family, friends and experiences of the past year with grateful heart. When I’m thankful I find peace with my life and my relationships. This is what December and every other month should feel like—joy, peace, gratitude and goodwill to all mankind. If you are reading this, I thank you for being a part of my life’s journey.

I’d like to share with you my plans for the new year. In the past, Uniting Caregivers has had three categories: Sunday Stories, Tuesday Tips and Thursday Thoughts. I’ve decided to drop the day and have  categories of Stories, Tips and Thoughts. I still plan on posting three times a week, but without the days listed two stories may be posted in a week or two tips, or two thoughts depending on the inspiration that week. If a guest author has written two parts to their story it could be posted simultaneously on a Sunday and then on Tuesday. At least one inspirational story will be posted every week and the follow up tip may be shorter than in the past.

 

 

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There Are Angels Among Us

Last year I wrote Traditions Make a Family CloseAll my life we’ve had a huge Christmas party with grandparents, aunts, uncles and cousins. Tonight the traditional party went on. Family and friends make the holiday special. I dedicate this song to you—for you are the angels among us.

Who are the angels in your life? Below are some of mine.

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 Live Nativity

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and… sharing the gift of talents 

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With technology talents can be shared across the states!

Technology makes sharing a special talent across the states possible!

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Amy, thanks for your photography talent and for sharing your pictures with me.

Thank you Mom and Dad for a great party. You work hard for weeks to get ready. We appreciate you keeping the tradition and providing us with fun times which keeps our family close. You are definitely angels among us!

The Joy of Acceptance

Layne-JudyLayne and Judy Coon are great examples of accepting others. I lived next door to them for sixteen years and also worked with Judy at Zion’s Bank for three of those years. I know Judy as a co-worker as well as a neighbor. I can’t think of another person I know who’s better at accepting others. Maybe it comes naturally to Judy because of her brother, Ricky, who had Down syndrome, Autism and Alzheimer’s. She was Ricky’s primary caregiver for the last sixteen years of his life. Some of those years she was still raising three children. She also helped raise my two children. Our son, Christopher, was best friends with their youngest, Tony. Our daughter, Katie, often played with their older daughter, Becky. When our accident happened, Judy was there for our children after school and whenever needed. Through it all, she had the love and support of her husband, Layne. The two of them are angels among us and can be seen with smiles because of the love and service they give to all.

I learned from them that accepting our situation would allow us to feel joy. By focusing on the positive, we can make the best of any circumstances. Tim Gray wrote a wonderful story about Ricky in 2010, a year before he passed away. Some of it was published last Sunday and this is more of the story.

Judy says she learned patience through her childhood interactions with Ricky. “I think it’s natural for a child to be patient with another child who has problems. It’s just automatic now.

Love Conquers AllJudy discovered the best way to help Ricky from watching her parents. Ricky was extremely stubborn and her father was strict with him, but her mother found a better way to reach him. “My mom learned that all she had to do was put her arms around him and love him and he would melt. Ricky would do anything mom asked, Judy said. Ricky can often be seen extending both arms out to people, motioning for a hug. Never a hugger, Judy learned to be one for Ricky.

Like most people, Ricky has good days and bad days. The difference is with Alzheimer’s, Ricky’s bad days are beginning to increase. On a good day, Ricky’s facial expressions and gestures are often like a joyful child pleased with something they did. He can’t wait to show what he’s accomplished to anyone in sight, especially Judy. On a bad day, Ricky looks worn out and perhaps just wants to be left alone. Sometimes he cries quietly with a look of inconsolable confusion on his rapidly aging face. Each time Ricky finds Judy all is well again.

Accept othersRicky enjoyed doing dishes for Judy. “He would take dishes out of the dishwasher and put them away. But, as his Alzheimer’s has gotten worse, the results were mixed. Ricky started taking cups off the counter that were dirty and putting them away. We started watching for dirty cups and stuff,” Judy says laughing, even though she knows it’s not funny.

“When Ricky was a boy, he could walk for miles and find his way home. He had a really good sense of direction. But now, Ricky has a hard time finding his way to the bathroom and at home he started asking permission to go to the bathroom.” Judy says.

Some interesting facts Tim Gray included in his story:

Down syndrome occurs in approximately 1 in 800 live births, according to the National Association for Down syndrome. People with Down syndrome have 47 chromosomes instead of the normal 46. Characteristics include low muscle tone, a slightly flattened facial profile, and an upward slant of the eyes. Roughly 40 percent of children with Down syndrome have congenital heart defects.

Alzheimer’s affects 50 to 70 percent of individuals with Down syndrome by the time they reach 60 years old, according to the Alzheimer’s Association. The progression of Alzheimer’s in those with Down syndrome takes approximately 8 years, with symptoms so slight it can go unnoticed for years. The average life expectancy for people with Down syndrome is 55 years old.

Autism is characterized by a lack of development in social interaction, language, and behavioral issues, according to the Mayo Clinic. People with Autism often retreat into their own world. They may also repeat words or phrases without understanding how to use them. Behavioral issues sometimes include performing repetitive motions such as rocking, spinning, or hand flapping.

I want to follow Judy and Layne’s example of accepting others. By doing so, one finds joy and can see the true beauty in every person.

Customized Employment

 

In the article last Sunday, Moving in a New Direction, I stated that I feel Mark is better supported in a segregated environment where staff is trained to deal with his and many others’ special needs. However, I realize it isn’t in the best interest for all individuals with disabilities, so I research to find some information on customized employment.

You may wonder what customized employment entails. For clarification I went to  http://www.dol.gov/odep/categories/workforce/CustomizedEmployment/what/ 

employment wheelchair“Customized employment is a flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized match between the strengths, conditions, and interests of a job candidate and the identified business needs of an employer. Customized Employment utilizes an individualized approach to employment planning and job development — one person at a time . . . one employer at a time.

employment_groceriesCustomized employment will often take the form of:

  • Task reassignment: Some of the job tasks of incumbent workers are reassigned to a new employee. This reassignment allows the incumbent worker to focus on the critical functions of his/her job (i.e., primary job responsibilities) and complete more of the central work of the job. Task reassignment typically takes the form of job creation, whereby a new job description is negotiated based on current, unmet workplace needs.
  • Job carving: An existing job description is modified — containing one or more, but not all, of the tasks from the original job description.
  • Job sharing: Two or more people share the tasks and responsibilities of a job based on each other’s strengths.

Self-EmploymentVendingBusinessLess common — though becoming more established throughout the country — is Self-Employment as a form of Customized Employment. Self-employment allows for an individual to receive assistance in the creation of an independently owned small business (typically a micro enterprise, under five employees) based on the strengths and dreams of an individual and the unmet needs of a local market while incorporating the individualized planning and support strategies needed for success.”

Under the direction of federal government, Centers for Medicare and Medicaid Services (CMS),the State of Utah Division of Services for People with Disabilities (DSPD) is developing a plan to help transition day programs, to better support individuals with disabilities in an integrated setting. To help in this transition, Ability and Choice Services is looking to hire people familiar with the Utah Division of Vocational Rehabilitation Services. In addition, people with job coaching experience and training would be very valuable. If you or someone you know is interested in these positions, please apply online at www.abilitychoice.org.

Ability and Choice Services are also looking for new work opportunities for the people they serve.  If you are aware of an employer who would consider a customized employment opportunity, please contact eric@abilitychoice.org. Thank you in advance for your consideration!

I also found two interesting and encouraging videos which are worth the watch.

Solutions for Employers

 

Creating Opportunities and Solutions

 

I hope this information is helpful and encouraging for those individuals who want to work, which has been so important for Mark’s self-esteem. I believe customized employment can be a win/win situation for both the employer and the employee and I hope more employers will consider how they might benefit from customized employment.

 

 

 

 

 

 

The Value of Work

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1981, Mark working on an electrical meter

What value do you place on work? Some spend their lives trying to get out of it. I have learned it is worth more than the wage earned.  On Sunday I shared the difficulty Mark and I had adjusting to the realization that his twelve year successful career as an electrician had abruptly ended with a car accident that rendered him wheelchair dependent in 1991. He went through Vocational Rehab testing and they helped him get a job at Discover Card. However, that ended eight years later when they closed down the department he worked in.

We were introduced to community based adult work and activity centers, also known as work/activity day programs. This service generally cost between $40 and $100 a day depending on one’s geographic location. It was the first time I’d heard of paying a daily fee to make money and it seem especially senseless when that daily fee far exceeded the jobs income. It took years for me to understand the reason for the fee, partly because I didn’t believe the level of help Mark needed was worth $40 – $100. It was also tough to accept that a successful master electrician now needed help to do a simple job. Most individuals in this kind of program haven’t had previous work experience and need continued encouragement to stay focused on the work task given and constant reminders of how to do the job correctly. It was mentally and emotionally challenging for me to see Mark in this kind of setting, yet his physical limitations made it necessary. Mark was anxious and willing to do whatever he could to get out of the house and go to work.

How could we pay for such a service? Many participants receive funding through state and local agencies. Although the funding available varies in each state, most offer Medicaid waivers for individuals with specific needs. Mark didn’t qualify for Medicaid and was put on a long waiting list with the State of Utah Division of Services for People with Disabilities (DSPD) for a Brain Injury Waiver.

work day centerWhile on the waiting list I negotiated with a work/activity center which allowed Mark to work there. I promised that if they had his work set out for him, he’d need little supervision and no encouragement to get the task done. He is very self-motivated, but would need help getting into the bathroom and lunch. He worked there for years while on the DSPD waiting list cleaning used VHS tapes and DVDs and packaging them for resale. That job ended when the movie rental stores became obsolete due to Netflix and other like programs to see a movie at home.

After fifteen years on the waiting list, Mark received a TBI waiver and started work at Ability and Choice Services (ACS). They are also a community based work/activity center. He has done contract assembly work for the past six years putting drip system sprinkler kits together, scrapbook kits, assembling packaging boxes, filling them and preparing them for shipping. They have also had jobs assembling conference bags and processing returned products. Currently they have been assembling installation kits for Zaggs Invisible Shield Protector.

Mark enjoys the staff at ACS and the environment there. Since I drive Mark to and from work everyday I’ve realize how hard the staff works at making sure their clients are in a safe and clean environment. They tend to many individual needs who’s abilities widely vary. Most the clients seem happy to be there and the atmosphere is warm and caring. I appreciate the staff’s ability and knowledge in how to handle difficult situations including seizures, which Mark has occasionally due to his TBI. Unfortunately, the contract work with Zaggs is coming to an end without another contract on the horizon. In fact the State’s system of operation for work/activity day programs is changing and Mark’s work possibilities are in question once again. We won’t lose hope and know from experience that when one door closes another one opens.

Sometimes work is fun and sometimes it isn’t, but it’s always good for us. It keeps us strong physically, emotionally and mentally. It gives purpose to life. It builds self-esteem, respect, confidence and gives us something to be proud of.  It teaches us teamwork and how to get along with others. It gets our creative juices flowing as we iron out the kinks
that come along. I’ve come to understand the value of work far exceeds the wage earned.

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What value do you place on work?

The Importance of Being Assertive

Assertive or AggressivePositive assertive communication is based on mutual respect, an attitude which defends your rights without hurting those of others. Being assertive shows that you’re willing to stand up for your interests and express your thoughts and feelings. It also shows that you’re aware of the rights of others and are willing to work on resolving conflicts. As an example see Experience is a Great Teacher.

When using passive communication you may seem to be shy, overly easygoing, or avoiding conflict. Why is that a problem? Because the message you’re sending is that your thoughts and feelings aren’t as important as those of other people. When you’re passive, you give others the license to disregard your wants and needs, which can cause an internal conflict because your needs came second. The internal conflict can result in stress, resentment, anger, or feeling you’ve been victimized.

When using aggressive communication you may come across as a bully who disregards the needs, feelings and opinions of others. You may appear self-righteous or superior. Very aggressive people humiliate and intimidate others and may even be physically threatening. You may think being aggressive gets you what you want, however, it comes at a cost. Aggression undercuts trust and mutual respect. Others may come to resent you, leading them to avoid or oppose you.

assertive-communicationBy being assertive you gain self-confidence and self-esteem, which helps earn respect from others. It improves your communication and decision making skills. Recognizing and understanding your feelings and communicating them assertively creates honest relationships and win-win situations. It’s a behavior where a person neither attacks nor submits to another person’s will, but expresses beliefs. Assertive is half way between passive and aggressive and is the ideal method of communication. It also helps with stress management, especially if you tend to take on too many responsibilities because you have a hard time saying no. Some people seem to be naturally assertive, but if you’re not one of them, you can learn. Here are some tips I found from the Mayo Clinic website to help you become more assertive:

  • Assess your style. Do you voice your opinions or remain silent? Do you say yes to additional work even when your plate is full? Are you quick to judge or blame? Do people seem to dread or fear talking to you? Understand your style before you begin making changes.
  • Use ‘I’ statements. Using “I” statements lets others know what you’re thinking without sounding accusatory. For instance, say, “I disagree,” rather than, “You’re wrong.”
  • Practice saying no. If you have a hard time turning down requests, try saying, “No, I can’t do that now.” Don’t hesitate — be direct. If an explanation is appropriate, keep it brief.
  • Rehearse what you want to say. If it’s challenging to say what you want or think, practice typical scenarios you encounter. Say what you want to say out loud. It may help to write it out first, too, so you can practice from a script. Consider role-playing with a friend or colleague and ask for blunt feedback.
  • Use body language. Communication isn’t just verbal. Act confident even if you aren’t feeling it. Keep an upright posture, but lean forward a bit. Make regular eye contact. Maintain a neutral or positive facial expression. Don’t wring your hands or use dramatic gestures. Practice assertive body language in front of a mirror or with a friend or colleague.
  • Keep emotions in check. Conflict is hard for most people. Maybe you get angry or frustrated, or maybe you feel like crying. Although these feelings are normal, they can get in the way of resolving conflict. If you feel too emotional going into a situation, wait a bit if possible. Then work on remaining calm. Breathe slowly. Keep your voice even and firm.

Four more tips that I want to remember for assertive communication:

  • Be respectful and kind.
  • Use specific examples, don’t generalize.
  • Provide objective and pertinent insights.
  • Don’t judge or attack the others.

What tips do you have on assertive communication? What has been your experience with doing so?

Three Ways to a Wonderful Life

Tomorrow, November 12th, is Mark’s birthday and as I searched the internet looking for something which describes and honors him, I came up with these three things he does daily to make his life and mine wonderful.

1) Have a sense of humor.
Have HumorMark has a great sense of humor, which makes living with him both enjoyable and entertaining. He makes me laugh in stressful times. No matter where we are he knows how to put strangers at ease with humor. When we left the hospital Friday, two nurses said, “I’m sure going to miss you here. You made me laugh and brought joy to my day.” He was going through a difficult, two day preparation before a colonoscopy, but still made the nurses laugh.

2) Never quit on what you want to achieve.

Never Quit

Mark is a winner because he never quits. He keeps working on and believing in his abilities. His perseverance is an inspiration to all who know him. He works hard at everything he does and when he doesn’t accomplish what he’d hoped to, he works at not letting it get him down. I’m proud of his determination and positive attitude. I consider myself a winner also because I’m married to him.

3) Choose to be happy.

Choose to be Happy Mark definitely chooses to be happy. He has good reason to be sad and disappointed in life, but he chooses not to be. He forgives and forgets thoughtless comments. He’s never demanding and always appreciative of all that he has. He’s a joy to take care of because he has such a grateful heart, which makes it all worthwhile.

For fun pictures of Mark in his youth click here.

What makes your life wonderful?  I’d love to hear your ways.

I hope you have a great day which leads to a wonderful life!