As Spring Break approaches for many families, road travel will be increasing . If you are one of the many families that will be on the road, whether by car, train or plane- here are some ideas to make it all a little bit more pleasant for ALL in the car.
When we found out that we were having twins – I heard “wow you will have your hands full”. Then when our twins were born too early and our littlest one – Anna Kathryn – was only 2 lbs., I heard “you are in our prayers”. Than when we got the diagnosis that Anna Kathryn had Prader Willi Syndrome, I heard “God chose you”.
Family, friends and even strangers mean so well when they tell you these little tidbits of what they think are kind words. The fact is when your family enters the world of being a “special needs family” we are no more prepared, chosen or special than any other family. We are thrust into a world that we know little to nothing about – but what we do know is that we love our children like I hope most parents do and we start our journey albeit a different one.
In a lot of ways Anna and Kayla are typical twin sisters, they fight, they laugh, they cuddle, they fight..but then there are the differences. Anna has spent at least a third of her life in the hospital, which means Kayla has spent one third of her life with an absent mom, too much time sitting in an uncomfortable chair in a hospital room and way too much cafeteria food.
I was determined to make our family just like every other family, I did not feel “stronger”, “chosen” or any of the other things so many people tried to tell me I was. I am tired, frustrated, confused and even sometimes angry. I think families like ours do ourselves an injustice – WE are different – we are not like other families – I mean in some ways sure we are – we work, we sleep (sometimes), our kids go to school…but it is different.
When Anna, in addition to having Prader Willi Syndrome, having over 16 spine surgeries and than in April had a sugery that resulted in her becoming a Quadriplegic – our family once again heard those kind words from a lot of those same people. But the fact is our family has faced many, many challenges that thankfully most families do not have to face.
As we embark on this next new “normal” – I think I realize that we are perhaps “chosen” – we choose to make it work, we choose to celebrate tiny milestones and giggles that most families may never notice, we choose to allow ourselves to cry, we choose to learn how to ask for help, we choose to realize how this one small child that has struggled her entire life – has changed us! We are blessed (and tired)
For us, it is every day .
But, we will join in to help spread the importance of acceptance !
What can we all do this month?
Builders and Gamers use activities that are appealing to kids (Building- Lego/arts and crafts, and Games- cards, board games) to teach the principles of friendship. This is not a play date. It is not a play group. We do refer to it as a social group, but it is more than that. Cooperation and collaboration are not just buzz words. We depend on cooperative participants and collaborative ideas. Every member brings a different set of skills and interests. Everyone learns to be part of the group, even when the activity may not be someone’s favorite. Learning to follow a group plan and actively participate (with a positive attitude) can be a challenge. Letting others have a turn when it is a favorite activity is another type of challenge. We learn to stop and clean up, even when the Lego set is NOT finished. (This one is hard for me too!!) While we are learning how to be accepted into the group, we are learning to accept others into our own group. Builders and Gamers welcome and include anyone interested in being part of our group. Our more experienced members are great mentors to new friends. Our group mascot, Crash the ferret, is a frequent visitor. Crash is great at starting conversations.
The Sportable Spokes, Sportable’s junior wheelchair basketball team, has recently qualified for the National Championship Tournament! The junior wheelchair basketball program started in 2006 and was comprised of just two players. Since then, the team has grown and has served twelve youth athletes with physical disabilities in the 2014-2015 season!
For those of us who have kids with special needs, there’s an added list of challenges to the ones that all couples endure. Statistics say our marriages are harder to make work, but I believe you can use anything as a reason to “fail.”
The majority of boys suffering with ADHD have awful relationships with their fathers. “Suffering” meaning the boys can’t get a hold of their own impulsivity, their distractibility, their erratic behavior, and the worst part is that their self-esteem is very low. “Majority” being over 50%.
Many people think about executing a Power of Attorney when they become elderly and are no longer able to handle their financial affairs. However, everyone should have at least one in place regardless of your age or health status.
Meet Sarah W, a Special Needs caregiver with College Nannies and Tutors. She’s been with College Nannies for over a year and a half while also volunteering for a few causes. Sarah is a volunteer certified EMT and a recreation therapy volunteer at Children’s Hospital of Richmond. Year after year, she has volunteered at a therapeutic riding center working with children with special needs. Sarah graduated VCU with a criminal justice major and a minor in Russian. She speaks Russian fluently and she tutors algebra!