Every Child Needs a Bike!
Most American children experience bike riding in their early years. It seems to be a favorite physical activity. When our daughters started walking around the age of 1, we bought them small riding toys. It was so exciting to see them push themselves around the yard or in the house. Then they graduated to big wheels and tricycles, and the thrills continued. They spent countless moments experiencing the freedom of riding, the joy of going fast down a hill. Then came the small, more grown-up looking bikes with training wheels, and eventually the training wheels came off. Such great memories were made! The memory of our daughter Amber learning to ride her bike without training wheels will forever be etched in my memory. She was so ecstatic to be able to ride like her big sister Abby, and it was ambitious because she was only 3 years old.
Biking is such a great physical activity and a confidence booster. It helps with learning, balance and stability. It is therapeutic for people of all ranges and abilities. According to Friendship Circle, a special-needs resource, biking encompasses many benefits for children beyond just fun. It can help the body with bone growth, strengthening of anti-gravity muscles, development of hand/eye coordination and visual perception, and it can increase circulation and blood flow throughout the body. Movement, which can be harder for a child with a disability, can help improve cognition. A bike can help facilitate movement that a child might otherwise not be able to do. After all, movement is life.
In recent years, my husband and I started to ride bikes on the trail, and I have rediscovered my childhood love of bike riding. So naturally, we wanted our son Austin to experience a bike, too. We bought a carrier to bring him along on rides, and he does seem to love that. He loves movement and the fresh outdoor air. It has also been a great way to include him in some family adventures. But my dream to get him a bike of his own kept nagging at my heart. I knew he would not be able to ride a bike like a typical child, but nonetheless, he deserves the feeling of freedom and joy that riding provides. To me, it’s a childhood rite of passage, and I want my son to have as many of those experiences that he can. So I, the mother who loves to research, found a bike online that I knew would work for him. It is called the Freedom Concepts bike and it was the only bike I could find that has all the proper supports my son would need. The problem, however, was the cost.
The first bike we tried we had modified by a wonderful man named Walt. It was great bike, but just not enough support for Austin. I was very sad, but we were able to donate it to another child.
Then, when Austin was 6 ½ years old, he got the Sarah Jian Lopez Medicaid Waiver and we finally had funding to get his bike. It took many months, but it was so worth it. He rides with help, and the Freedom Concept bike gives him total support. But, oh the joy of his legs moving and being outside. It is both refreshing and therapeutic for him. His legs are learning to move more and on the bike to move in opposite succession. In my world, that can only help his body. And really, who cares about the therapy part? This boy is riding a bike and experiencing a little freedom that we all should be able to experience. Every child needs a bike. I am beyond thrilled that my son has finally been able to have that luxury. He totally deserves it, and the smile and happiness on his face are worth all the time and research getting him that bike took.
Again, every child needs a bike. I hope you get time to enjoy your bike now and then!
Jenny Wade lives in Columbia with her husband, three children and two dogs. She has a degree in Elementary Education. Jenny is an advocate for her son Austin who has a severe brain injury. Austin has taught her about navigating a new side of life.
Wishes and Dolphins
This summer we were given an amazing gift. The Make-A-Wish Foundation of Missouri granted my son Austin a wish.
The Make-A-Wish Foundation makes wishes come true for children with life-threatening medical conditions. It is an amazing organization that works really hard to provide an experience of a lifetime. Different children choose different wishes. In our case, Austin could not tell us verbally what he would wish for, so we had to really think about what he likes.
Austin loves water, warmth and movement, so we decided a trip to someplace by the ocean would be fabulous for him. We had thought about a hot tub or having his room made over, but the idea of a family trip won over. This would be our first real family vacation since Austin was born. Most of our travel since then had revolved around therapy or medical care.
When our wish coordinator suggested a place called Island Dolphin Care, I was a little concerned about having another therapy place be part of our vacation, but it turned out I didn’t need to be worried. Island Dolphin Care (IDC) is located in Key Largo, Fla., and that is where Austin was given the gift of swimming with dolphins. IDC is a not-for-profit organization that provides dolphin-assisted therapy to people of varying abilities. We discovered that dolphins have an amazing ability to communicate and connect with humans, especially children and those with special needs. I totally believe they are magical beings and speak to our innermost selves. We all fell head over heels in love with the dolphins — especially my daughters Abby and Amber.
IDC does a great job of including siblings within its program. All too often, the siblings of a child with special needs get overlooked. IDC founder Deena Hoagland understands this and designed the IDC program to allow the sibs to feel like part of the experience. Both my daughters were able to have a chance to swim with Austin and the dolphins. The girls also were included in the classroom activities. It was an experience our family always will remember.
In the gift shop, a display of the book written by Hoagland, “Breaths That Count: The True Story of a Boy, a Dolphin and Their Remarkable Friendship,” caught my eye. I had to read the book. I had to learn all the details of this extraordinary family who make dreams come true through dolphin therapy. I wanted to connect with this mother, her journey and how she turned her dreams into a reality. Hoagland’s book is self-published and available on Amazon. It is truly a heart-warming story of healing and amazing love with dolphins and a family united to help their little boy.
Make-A-Wish created the vacation of a lifetime for us. It thought of everything. We were given an accessible wheelchair van to drive while in Florida, and Make-A-Wish made it possible for us to bring a nurse for Austin. Caring for him requires much time and work, and having help for part of the time enabled us to have a more relaxing experience. That extra help made a huge difference and is not something we could typically add to a vacation budget; it’s just too expensive.
The Make-A-Wish is such an amazing foundation. They really make wishes come true for children with life threatening medical conditions. It is really amazing what they do. Thank you so much, Make-A-Wish and Island Dolphin Care you gave a trip of a lifetime to a little boy who has been through so much in his life. You gave him joy and you gave him some connectedness that could only come from dolphins and the therapists at Island Dolphin Care. You made our hearts sing.
FYI, if you are looking to donate to organizations that actually help people Make-A-Wish and Island Dolphin Care are well worth your money. You can also check them out on Facebook.
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.
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.