Soaring Families Founder on Barriers and Success

You've Won! You Beat the System!

As I told a friend about Ben’s university graduation, he said, “You've won!”. At first, I didn’t understand. Then it hit me. To reach this pinnacle, in his view, meant we had won. That we had beaten the “system.” - Mike George, Founder Soaring Families

Parent Caregivers

Parent caregivers of adult children with disabilities are people who still care for their child after the ages of 18; in this article it is because of a disability from birth.

We are sharing the story of Soaring Families founders Mike, Jan, and Ben as it is an extraordinary story of hope, caregiving, tenacity, surprises, and fierce dedication.

They designed a unique caregiver support system that helps family caregivers and the people they take care pf live full life and conquer barriers before them; their company is called Soaring Families. They know that dealing with adult children who have comprehensive care needs can be all-consuming. From that first moment of diagnosis, life is forever changed. As it is for all family caregivers.

This story is told to us from Mike George, Ben's father.

Tenacity and beating "the system"

You see, when you start your life with “he may never walk, talk or go to school”, the idea of winning anything is so foreign. All your conversations are about survival and the things you’ve lost.

“You've won!”...

To reach this pinnacle, in his view, meant we had won. We beat the “system.”

A system that always seemed against us. Where we had to fight for even the most basic of needs.

Having to justify every outcome, every dollar, and getting endlessly denied. Then appealing. Then moving up the chain of command to plead our case again.

We are always expecting to get less than what Ben needed and wanted.

It was exhausting.

Today, our win was getting Ben's support to transition to work. Without a fight.

Expectations

Actually, getting what we asked for was new territory for us. It seemed too easy. There must be a gotcha coming.

Every family I've met who is impacted by a disability has a significant, common factor. Limits and conditions dictate our lives. Our hopes and dreams are, at best, dulled or, at worst, killed.

To think that Ben, nearly 27 years old, was now a university graduate and beginning a part-time job was so surreal. Even that word doesn’t convey the enormity of these milestones.

Did I think these were even a possibility as recent as ten years ago? Not a chance.

But we believed that Ben deserved to follow the normative pathways of life – you know, get an education, get a job, have a fulfilling life – this became the target that pulled us forward.

One by one, the barriers fell by the wayside.

After being told our son, Ben, might not live the day he was born and likely never walk, talk, or go to school, we were in a world of hurt. Ben ignored what the "experts" told him he couldn't do with an unstoppable determination to live an extraordinary life.

Ben shows everyone that a world of fear and despair, pain and exhaustion, can be overcome if you have unlimited hope and the support of an inclusive community.

Overcoming Barriers, one by one

Here are a few hurdles we overcame for Ben and because of Ben's zest for life.

• Barrier: May not live the day.
• Answer: Ben crushed that one.

* * *

• Barrier: Seizures.
• Answer: They’re a part of his life, but they don’t control it.

* * *

• Barrier: Can’t walk or talk.
• Answer: Walking is challenging, but his talker speaks his thoughts.

* * *

• Barrier: Shunned by his kindergarten teacher.
• Answer: We found a new school and a fantastic teacher! Thanks, Mrs. Malone!

* * *

• Barrier: Low expectations from experts.
• Answer: We learned to ignore them.

* * *

• Barrier: 24-hour care.
• Answer: It’s a big deal, but we found a great team to support us.

* * *

• Barrier: Major surgeries and hospitalizations.
• Answer: They were stressful and worrisome, but we took them one hour, one day at a time.

* * *

• Barrier: Big, complex, and unfriendly health and education systems.
• Answer: It was daunting and exhausting, but special people showed up at the right time.

* * *

• Barrier: No communication system for Ben’s first 19 years.
• Answer: We found people who believed in his potential.

* * *

• Barrier: Starting university classes with no education assistants.
• Answer: We found people willing to try and saw the bigger picture. And he is a university graduate. <<BOOM!>>

Stay focused & win

Keep your eye on the target when you feel overwhelmed, and the world seems like it is closing in all around.

Focus on one thing at a time. One barrier at a time.

It may seem unending, but at some point, a friend will let you know that you have won. Only at that point will it all become clear. And you’ll realize that you can overcome anything.

I never dreamt that Ben would attend University, let alone graduate.

I need to rethink my dreams.

Reposted with permission - this blog initially appeared in Soaring Families on Jun 05, 2019

About Soaring Families

From Mike George.

What I learned over the years, in talking with hundreds of family caregivers, was that our suffering was not that unique. Others were facing the same stressors, the same barriers, the same limiting beliefs, and the same internal demons.

Families dealing with aging parents. Or a spouse with a degenerative illness. Or a child with complex care needs.

And then it hit me

If we had all these things in common, wouldn’t it make sense to work together to overcome these problems, to be part of a “nation of families,” so to speak, where it was easy to support each other and share expertise?

And wouldn’t it be amazing if families were lining up who couldn’t wait to join because it is energizing, positive, and meaningful?

And so began the idea of Soaring Families.