In today’s society, we are expected to wear many hats. Some of us not only wear them but, also design and make our hats too. Being a parent is a perfect example of a high-stress situation and when you have a special needs child the level can sky rocket. Research has shown low to moderate levels of stress are actually good for us because it keeps us moving and motivated. However, high levels of stress are considered as big “no-nos” because of the harm it does to the body. It is suggested that when you start to feel stressed you take a break and do something relaxing to lighten the load. The question is, “what are we supposed to do for relaxation?” If you are a person that is used to spending most of their day multitasking and being nothing less than a superhero, how do you turn it off for some “me time”?
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)
Looking on Facebook I see pictures of my friend’s kids at birthday parties and/or play dates and I recall the last play date The Boy (TB*) attended. It was a sword-making one last summer where you take tubes, styrofoam and lots of different colored duct tape. I have no idea the last time he was invited to a birthday party.
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.
With Easter approaching, I thought it would be a great time to share all that will be happening around town. Many of these events will be good for all members in your family and can offer some wonderful fun.
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!
At Autastic Avenues , we have been using The Social Express® by The Language Express, Inc., for a long time. In our opinion, it is the best app for children who experience the social learning challenges associated with ADHD, ASD, and general social learning deficits. The engaging webisodes teach how to manage social situations and how to deal with stressful ones.