In a Perfect World
by Leeanne Seaver
A Word From Leeanne
You know the type. The mom who compels the professionals on the IFSP or IEP team to have their act together before the meeting; the parent who’s willing to stand up at a big conference and ask the question everyone else is too afraid to say out loud… the one who you can speak your heart to and be vulnerable with… that parent. Well, if you don’t, allow me to introduce Una Carroll, parent of a Deaf son, who is guest-writing this column from her unique perspective on diversity. Thanks to Una’s gutsy, unfettered take on things, my awareness of and appreciation for the range of experiences parents and DHH kids have has grown in such important ways. Give her a read.
– Leeanne Seaver, H&V Headquarters
You Don’t Have to Settle for Holland
By Guest Author, Una Carroll, Arkansas H&V
“My name is Una, and ‘Welcome to Holland’ no longer inspires me.”
“Hi UNA!”
For the uninitiated, Welcome to Holland is an inspirational essay written in 1987, by Emily Perl Kingsley, as her answer to what it is like to parent a child with a disability. In her essay, she writes “The plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. ‘What do you mean, Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.’” The metaphor is that the trip to Italy is a typical birth and child-rearing experience while the trip to Holland centers on the experience of having and raising a child with special needs. Providers and well-meaning friends hand out this essay to parents learning their child has a disability. When I first read it, I was in love with it! I found it inspiring. Like the poem Footprints, I found it to be a source of strength. Her words gave me hope of finding a positive future when my son was born.
As my journey with my son plodded along, those words no longer resonated with me. I remember my friend Mandy referring to it once, and my thought was: “I am in Italy, I just got lost from the group.”
Ms. Kingsley creates this idealized world where plans change and you will be a little sad but everything will work out in the end. Through my personal journey, I saw the fallacy in this type of magical thinking.
In metaphor or real life, being dumped in a place for which you are unprepared is scary. Ms. Kingsley twice says in her essay “It’s just different.” In truth, it is not. Families navigate the same educational, healthcare, and societal systems as everyone else.
“So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place,” Ms. Kingsley says.” Even if it were a “different place,” for me, she completely misses the impracticality and fear of being dumped somewhere you weren’t planning to go. Where would you stay? In 1987, there was no Euro, so how would she exchange her traveler’s checks? Did she have the right clothes for the climate? What about her flight home? Most new families are woefully underprepared for this abrupt change in plans. There are doctor’s appointments, evaluations, new equipment, child care arrangements, new financial obligations, and all the paperwork (so much paperwork) we must face. Our “new language” can be hard and confusing. We learn about our child’s needs, do IFSP, IEP, and post-secondary planning, and we even prepare for what will happen after our deaths. We mark the milestones to make sure our children are on track. We have to seek out the right people for any of this to work, and it still may not go to plan. We must accomplish all of this while being an actual parent.
Ms. Kingsley closes with “the loss of that dream [a typical child-rearing experience] is a very very significant loss. But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.” I truly believe I have lost absolutely nothing. I know many people do mourn the dreams they have for their children, and I truly understand that. For me, I have a beautiful son, who would be a different person were he not deaf. I adore the young man that he is. I wouldn’t trade him for the world. Has raising him been harder? Sure. Have I wanted to give up? Daily. Have I wished his life was easier? Of course. Yet, in the end, we got to see Italy, and it was magnificent.
Final Thoughts
Parents like me seek inspiration and motivation. We do our reading, training, and workshops all in the name of success. We talk to other successful families. We think: “Our child will be successful if we follow this model!” Then we learn no two experiences will or can ever be the same. We speak of a lack of success as a failing. It is not; it is real life. The facade of success may impede real success. We need to be honest with ourselves. Are our children getting what they need? Are our children happy? Is our family thriving? Are you getting enough sleep? Whatever metrics your family chooses, are the metrics needed to measure your successful journey. Hands &Voices preaches “What works for your child is what makes the choice right,” and that is the truth. It is our responsibility to one another to create safe spaces for families to open up. If we are not honest with ourselves about our journeys, we cannot course correct. Only then can we make it successfully to our destinations. ~
Una Carroll is a charter member of Arkansas Hands & Voices as Vice President emeritus of the Chapter. She also serves as an ASTra Advocate. Una is married to Richard and mother to Conor, 21 and Asa, 17. They have a dog named Bloow, (pronounced Blue) whom the boys have come to accept as their mother’s new favorite.