Special Needs Planning Newsletter: Life’s Detours Letting Go of Preconceived Expectations
Life’s Detours: Letting Go of Preconceived Expectations
by Amy Boulware, Elder Care Planning Manager, (LAP MSW)
I was listening to a country music station when a Suzy Bogguss song started playing as I was driving to work one day. Tears began cascading down my cheeks. I had never heard this song before and was puzzled by my sudden emotional reaction. While I listened in the solitude of my car, the words she sang really spoke to me. The song was called ‘Letting Go,’ and it chronicles a mother’s feelings when her child turns 18 and is ready for the world. From past experience, I’ve learned that music has the ability to elicit intense emotions. And on this day, the music reminded me of everything I felt when my daughter Hannah suffered a traumatic brain injury a few years ago.
She’s had 18 years to get ready for this day
She should be past the tears, she cries some anyway
Oh oh letting go
There’s nothing in the way now,
Oh letting go, there’s room enough to fly
And even though, she’s spent her whole life waiting,
It’s never easy letting go
I always knew my daughters would one day go away to college and spread their wings. However, after Hannah’s traumatic experience, my thoughts about what independence would be for her changed without warning. In my head, I asked myself if she would ever be able to leave home, if she would ever be able to care for herself, or if her life would ever include the things I had always hoped for her – a fulfilling career, husband, and kids.
With one life altering event, the idea of letting go meant a whole new thing for me. It meant letting go of those expectations I set over the last 18 years. It meant reframing the way I thought about the future, not only for her, but for my husband and myself. Empty nesting wasn’t going to happen in the same way we had anticipated. Hannah would need us in a different way than her sister did.
Most parents who have a child with a disability face these same kinds of emotions at some time in their lives – some earlier than others. Regardless of when, it’s a matter of acceptance. Hannah has had to confront these life changes as she grapples with what we call ‘the new Hannah.’ Just because things have changed doesn’t mean that her future won’t be bright. It just means it will be different than we thought.
From the point at which parents have a child with a disability, whether the child is born with it or acquires it later in life, they are fearful about what life will be like when they are no longer around to protect and guide their child. As I help families navigate through special needs planning, I find myself helping them create a plan that will assist in easing some of these worries.
7 Tips for Creating a Good Life Plan for a Child with a Disability:
- You need a plan. Don’t put off planning because you are afraid there are no options for your child after you are no longer able to be the primary caregiver.
- Find a special needs planning team that can help you map out what your growing child will need emotionally, medically, financially, legally, and educationally. Not all steps need to be done at once. Don’t be intimidated by cost; it is far less expensive to be proactive rather than act only in a crisis.
- Intentionally create a circle of support for your child that includes people other than family members.
- Focus on your child’s quality of life. Sometimes that means allowing your child to take risks, fail, or fly beyond what you could have conceived.
- Be flexible and know that sometimes the best plans need to be adapted. What works today may not be the best in 20 years.
- Accept failure and try again. If scientists didn’t embrace failure, we would probably never have any wonderful discoveries.
- Include your child in the planning. Parents may not always know everything.
If you have any questions about special needs planning, please reach out to Amy or a member of the Special Needs Planning Team. We are just a call or email away.