Advocacy, Advocacy, Advocacy

Advocacy, Advocacy, Advocacy 

“Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth” — William Faulkner

Over and over again since my son was hurt, I have to advocate, advocate and advocate. It can get really exhausting and stressful and overwhelming. I could keep adding on adjectives to describe it all, but I don’t really want to bore you too much. It seems like constant battles must be waged. Things that should be so simple are simply not. I have had to step out of my box in more ways than I care to. I have been on TV and radio shows, I have talked in front of groups of people, I have written countless letters and emails, I have traveled to foreign countries, I have visited my legislators in Jefferson City and now I have added talking to my local school board to the list. None of these things would make my bucket list, if I would ever sit down and make one. Except, of course, the travel part. The travel I did was for treatments for my son and not leisure, but we did throw in a little fun. 

This June should be a month to enjoy with my children before the middle to end of summer brings many activities. I am becoming increasingly aware of the little time left with my teenage daughter. She is turning into a young women right before my eyes. It’s amazing how fast the time went. The other night we were out to eat and a young couple sat at the table next to us with a baby. It doesn’t seem that long ago that I was a mom of young children. Now I am the mom of a teenager, a preteen and an 8 year old. Hard to wrap my brain around it sometimes. I guess you think that you are going to have all this time with your children, and then one day the end is looming close. I know it’s not really the end, but it’s the end of an era.

Anyway, my point in all this is that my plan was to enjoy my children this summer before it all gets too busy. But of course, a problem from the bureaucrats or officials had to be thrown in — people making decisions about policies for families who have no clue how it affects the child. This policy that was made greatly negatively affects the ability of my son to be able to have the best possible outcomes in the school setting. I am heartbroken and am going to do everything I can to change this. I won’t go into the details at this time, but I am hoping that simple advocacy and raising awareness will solve this problem. I hope these officials will be willing to open their hearts and see the children whose lives they are affecting. It is so frustrating when policymakers make decisions with little regard to how it actually affects the people. This situation is extremely distressing, and it is situations like this that eat at the precious time I have with my children. It takes my energy and time to fight for basic rights for my son — rights that should be a given.

There are some things that you have to be willing to comprise or let go, but others are just too crucial to roll over and play dead. I have learned, just like with my children, to pick my battles; to save the battle for the really important things. This current battle that I am in is one of the really important things. I believe, like William Faulkner said, and won’t be afraid to raise my voice against injustice.

So I will keep my chin up and keep advocating. I will probably cry behind closed doors, but I will dust myself off and keep on keeping on. I won’t let my summer be totally overtaken. I will enjoy my little clan.

© 2013 Columbia Daily Tribune . All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

 
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Happy Mother’s Day

Happy Mother’s Day

Mother’s Day means so much to me. It’s a day to honor my own mother and grandmothers and a day to reflect on being a mother to my children. Motherhood is by far the greatest joy I have experienced in my life. Granted, it also can be the hardest job ever, though it comes with many rewards and children are priceless treasures. I am a better person in part because of each of my three unique and precious children and, of course, my own mother.

In thinking about Mother’s Day, I must first mention my own mother who is not perfect but she is mine and she did her best for me and is a wonderful, caring mother. I love her and admire her so much. I am truly blessed that she is my mother. She helped me become who I am today. She taught me about unconditional love, the importance of family and so many life lessons. I am forever indebted to her and thankful for her. 

Being a mother is not always flowers and hugs and declarations of “I love you, Mom,” though those things do happen. It’s often the hard choices of laying down boundaries and rules and making difficult decisions instead of the easy ones because you know long term it will be beneficial for your child(ren). Often times, saying “No” is so much harder than giving in. I have told my daughters that, “I instill rules and boundaries not because of spite but because I love you so.” Someday they will understand.

I also have found that my children teach me so much if I remember to listen to them and observe the world through their eyes. Listening can be hard to do but essential for figuring out their unique needs. Each circumstance requires different responses.

Being the mother of a special-needs child is really the hardest thing I have ever done. In the beginning, it was just about basic survival and dealing with the pain and loss of what happened. Seeing a child go through a life/death situation and the struggles that no one should endure breaks a mother’s heart into a million pieces. There really are no words to describe it. Then it was about trying to heal his body and brain and my mind. It is a continual struggle, but with much less intensity as the years go on. And within all of this, I have become a full-time parental case manager. I manage his health care, his education, his recreational and therapy activities and the list goes on and on. It really is a 24 /7 job. Through the struggle of being Austin’s mom, I have evolved and grown and done things I would never have thought I would. He is my greatest teacher and inspiration.

Being a mother to my daughters also is extremely rewarding and important. This new era of being a mom of a teenager (not sure how this happened so fast and how I got this old) is a whole new stage with a huge learning curve. As my daughters have grown, they have started taking more and more responsibilities for their lives. I still oversee much of their lives, but each year my role is slightly smaller as they grow and mature. My relationship with my daughters is ever transforming and growing as their needs evolve. They need me less in many areas and differently in others. It’s a constantly changing role. Finding the right balance between their desire for freedom, privileges and needs can be quite the challenge.

My daughter Amber recently asked me, “Mom, what do you want for Mother’s Day?” What a loaded question. Wow. If she only knew. She was probably thinking I would ask for some clothing or a household item. Only those things are not that important. I like to tell her that the most precious things can’t be bought. The best Mother’s Day gift is just her happiness and love, but a small handwritten card is also well appreciated . I want the best life for her and her siblings. I want her to grow up with compassion and empathy and care for others as well as love for herself. I want her to be kind to herself and enjoy her life and live it to the fullest. I want her to find her calling in life and fulfillment and joy in her choices. I want her to grow up to be a person who is comfortable in her own skin.

In the end, as a mother I try my best and I hope that my children know the depth of the love I have for them. Sometimes, I have to make the hard choices, but it’s because they mean so much to me and I greatly desire the best future for them. I will and have made mistakes but I hope they know my intentions are good and meant to bring them fortune.

On Mother’s Day and every day, please appreciate the women and mothers in your life. It’s a hard job. But the hand that rocks the cradle really does rule the world.

© 2013 Columbia Daily Tribune . All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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Happy Mother’s Day – Columbia Daily Tribune : Catching Curve Balls

Happy Mother’s Day – Columbia Daily Tribune : Catching Curve Balls.

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Friendship

Friendship

When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.

Henri Nouwen

My life is greatly enriched by my girlfriends who include my friends, sisters, aunts, daughters and my mother. I am so grateful for each and everyone of them. Having good friends is life enhancing and stress reliving. These ladies are priceless and make my world adventuresome and well worth while. Having a friend who will listen, laugh and cry with you is an amazing thing.

I  think most of us would agree about the importance of friends in one’s life. According to Madeline Vann, MPH in an article titled The Importance of Friendships (www.everydayhealth.com), “Spending time with friends is fun, but it may also yield a multitude of long-term physical and emotional health benefits. Studies show that healthy relationships make aging more enjoyable, lessen grief, and provide camaraderie to help you reach personal goals, among other things. Maintaining positive relationships should rank up there with healthy eating and exercise as a necessary investment in your health.” She rates friendships as sacred as healthy diets and exercise.

Friends can be for a season or a lifetime. Common threads in life help hold friendships together and often when those threads change friendships can change or cease to exist. It’s not always a conscience choice – just all of the sudden it’s been months since you have spoken to someone. And those months can turn into years. Social media can help you stay in touch but it can also hinder more personal interactions.

Often when you have a special needs child, the dynamics of your friendships can change. I tried to find research on how having a special needs child can affect one’s friendships and really didn’t find anything.  It’s probably one of the last things in the realm of special need issues to worry about. There is information about marriage and siblings but friendships seem overlooked. In my mind friendships are crucial in life and can really affect the overall perception a person has of his or her life. Many moms of special needs children feel excluded and often report losing friends after their child’s diagnosis. For me, I felt that I lost a number of friends after my son was hurt. My whole life revolved around his care and therapies and I didn’t have much time or energy to devote to friends. A few special friends stuck by me but most slowly faded into the background. It is true that even without a child with special needs many friends are just in your life for a season. We just tend to lose touch with people when we are not involved in activities where we see them regularly. Most people have such busy lives.

The isolation of raising a child with significant health care needs can be lessened by reaching out to other parents in similar situations.  Parent support groups provide natural therapy and camaraderie. We all need good support teams and people we can laugh, have fun and even cry or vent with. They can help provide empathy and understanding. To feel supported and valued is critical.  Being able to connect with people who can understand my world, the joy and pain and exhaustion really helps me.  They help me to know that I am not totally alone in this journey. I am not the only one with a child who has severe brain damage or other special health care needs. It helps to see that others have needs also. Last weekend, I had the privilege to attend a ladies night with a few other moms of children with special needs. It was so good for my soul, heart and mind to have time with them. It was a wonderful way to help reduce the stress in my life, and have some fun.   All of our stories are so different, each of our children have different abilities and challenges but we understand each other’s world. We are automatically members of this club that none of us aspired to be in but once in this so called “club of parents of children with special needs” it is not such a bad place. It’s actually a rather caring and real place to be.

I have met some amazing friends through different therapies that we have done for my son. During the therapies,  you tend to meet other like minded individuals who are tying hard to help their child or loved one. A good friend commented when we would all go to lunch with half of us in wheelchairs that it didn’t feel so different or odd when there was a group of us.  We actually all felt typical and were a huge source of support for one another. It is an empowering feeling.

I also need to connect with friends who knew me before my child with special needs. Sometimes I need that reminder of my own identity and sometimes I just need to feel like I did before this all happened in my life. So for me, my friends from before my son was born and my friends who have children with special needs, all play an important role in keeping my mind healthy and my life fabulous.

Sometimes, I get so caught up in my own world, I forget to reach out to my friends and other important ladies and let them know that I care about them too.  It can be hard to find time to hang out with friends. There are so many things to do. Our families have to come first but we should not forget our friends. I need to revaluate my role in not keeping up with friends.  I want to thank all the important females in my life – my friends, sisters, aunts, daughters and my mother!!  I value you and will work harder at maintaining those relationships.

So ladies (and guys too) don’t forget to set aside some girlfriend time (or guy time) every now and then. It’s good for the soul!

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Austin’s Story

Austin’s Story.

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Cerebral Palsy Awareness

Cerebral Palsy Awareness

March is Cerebral Palsy Awareness month. Awareness is knowledge, and education is a key element in helping people understand cerebral palsy conditions.

This issue is important to me because my son, Austin, is diagnosed with cerebral palsy due to his brain injury. When he was diagnosed I had had only a little knowledge of what cerebral palsy meant, which left me with many questions. How would this affect my son? Our lives? What does this even mean? The doctors gave me the only answer they could: Only time will tell what Austin’s brain injury would mean for him. The brain affects everything the body does. The brain controls all.

The definition of cerebral palsy, according to PubMed Health: “Cerebral palsy is a group of disorders that involve brain and nervous system functions, such as movement, learning, hearing, seeing, and thinking. There are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed. Cerebral palsy is caused by injuries or abnormalities of the brain. Most of these problems occur in the womb but they can happen at any time during the first two years of life, when a child’s brain is still developing.”

According to the Centers for Disease Control and Prevention, “Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. The CDC estimates that an average of 1 in 303 children in the U.S. have CP.”

According to the nonprofit Reaching for the Stars, there are many misconceptions about cerebral palsy. The fact is that children and adults with CP have a wide range of varying abilities and disabilities. CP is a general term that encompasses mild, moderate and severe disabilities. People need to know that CP is not contagious, it is noncommunicable. In this sense it is not a disease. It also is non-progressive but problems with the body can worsen over time, though therapy can help prevent and even improve different parts of the body. CP is not caused by problems in the muscles or nerves, it is caused by damage to motor areas in the brain which disrupt the brain’s ability to adequately control movement and posture. “Cerebral” refers to the brain and “palsy” to muscle weakness/poor control. Although cerebral palsy is not yet “curable” in the accepted sense, medical management and therapy can help improve function, and many promising therapies and treatments are currently being investigated.

For my son, therapy is a crucial factor in keeping his body healthy and working the best it can. He has made very slow gains, but any little improvement for him leads to a better quality of life. Keeping his body in healthy alignment prevents further problems. It is really a necessary factor for his life.

Most importantly, my son and many others with CP are people first. They might need more supports or do some things differently, but are human just the same. Like everyone they need love, laughter and the right to pursue their dreams.

If Austin could talk, I think he would tell you this: “Please don’t stare at me and my equipment. Smile at me. Say hello. Even if I can’t talk, I might know much more than you think. I have my ways to communicate. Give me a chance. I am human, too. And I love to smile and laugh.”

I hope that more awareness will lead to more research to better the lives of those with CP and maybe even in my biggest dream: a cure, a way to heal the brain, which is the cause of CP. Hey, a girl can dream.

For more information go to MyChild at CerebralPalsy.Org – The Ultimate Resource for Everything Cerebral Palsy (800) 692-4453.

© 2013 Columbia Daily Tribune . All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Posted in  on Wednesday, March 13, 2013 3:08 pm.

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Cerebral Palsy Awareness – Columbia Daily Tribune : Catching Curve Balls

Cerebral Palsy Awareness – Columbia Daily Tribune : Catching Curve Balls.

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