Skip to main content

Paradigm Shift

I grew up having a great birthday party each year – with friends, Carvel ice cream cake and games. It is important to me that our children have that experience as well. Each year, I’ve stressed over how we can make it great for Ben too. This year, I changed my perspective – it needed to be great for Ben – and that meant changing my view of birthday parties. Ben’s favorite place to eat is Fuel Pizza on Central Avenue – it has TVs anywhere you look, excellent pizza and a low-key atmosphere. I planned a 2 hour party with family and friends with pizza and Bob the Builder cupcakes. After one hour, several slices of pizza and two cupcakes, Ben was ready to leave. With the help of Grandma, he made his way to the exit. Party was over.

A paradigm shift is necessary. We, as parents, cannot apply the same standards that we use everyday in our own lives or from our childhood to plan, make decisions or even measure success. A whole new scale must be developed when you have a child with special needs – and that may even change as the child grows. In the instance of the birthday party, if my typical child was ready to leave after one hour, I would have been horrified. But I know with Ben, he had a good time, and the party was a success.

Comments

  1. Hi Vanessa!
    Wow, what a great job you've done...for Ben, for others, for yourself! You've reached the point in this process where you are able to share your experiences with others, both good and bad, and that in itself is a milestone to be proud of! It's about time that we tackle the difficult subject matter and talk about the sometimes unpleasant experiences we encounter through our journeys. I will forward this blog to those I know will benefit from your openness! Send Ben my love!

    ~Kim Jonas (formerly Dolan)

    ReplyDelete
  2. Hi Vanessa!
    Wow, what a great job you've done...for Ben, for others, for yourself! You've reached the point in this process where you are able to share your experiences with others, both good and bad, and that in itself is a milestone to be proud of! It's about time that we tackle the difficult subject matter and talk about the sometimes unpleasant experiences we encounter through our journeys. I will forward this blog to those I know will benefit from your openness! Send Ben my love!

    ~Kim Jonas (formerly Dolan)

    ReplyDelete

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

He Ain't Heavy, He's My Brother

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.   He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h

Make this Race Amazing

Mecklenburg County's Therapeutic Recreation's Amazing Race is Saturday, March 24, 2012. All funds raised go directly to the scholarship fund for summer camp. Summer Camp is 8 weeks long with over 150 children with special needs participating. Last year, over $6,500 was given away in scholarships. In times of budget cuts and loss of resources, Amazing Race is a creative way for the staff to raise money for the children who may need financial assistance attending camp. I will be posting photos from 2011 camp. I am only posting photos that do not show faces of the children, but you will get the idea about how much they enjoy the activities. You don't have to see their smiles, you just have to feel them. The staff have sent me their thoughts on how they feel about camp and I will be posting those as well. Most are trained as recreational therapists and have devoted their life's work to helping children and adults with special needs learn skills, make friends, de