The Abridged Version: Independence Farm a transitional residence for males with moderate learning challenges in East Sandwich, Cape Cod, Massachusetts, invited me to do an interview for their blog on my book, This Crazy Quilt: Parenting Adult Special Needs One Day At A Time. I was excited and flattered by their interest.

As usual, nothing passes my way without my ever-scrutinizing eye for process at work and indeed I was amazed at how effortlessly I was able to respond to each of their questions. The journey recorded in the book is so encoded in my mental/emotional being, defining a segment of self that I believe matches that of many parents of special needs children. And in no small measure of all parenting, which though at its most intense only lasts a couple decades of our hopefully long lives, yet leaves a permanent definition of self like no other life adventure.

Take a look at the interview. I hope that it is useful to you and your family. (You can also read the interview on their blog here .)

 

What motivated you to share your story?

As I approached June 2011 knowing that was the month our twenty-one year old daughter would return to our home state after graduating from the post-secondary program Grow, I became increasingly concerned about whether I could pull all the pieces of funding, residential and vocational programing together to create a safe adulthood for her. I had been preparing for this moment for almost two decades and yet I felt unprepared and scared.

I shared my worries with a friend who happens to be a journalist and she blurted out “You should write about this. No one is telling this story.” Since I was blogging as a psychotherapist/clinical social worker on couples’ relationships, I knew how to do this and it made sense.

On April 1, 2011 I published my first post at Parenting Adult Special Needs. I continued to write a daily post for six months and then a weekly post for another six months, covering the workings of that transitional year when our daughter aged out of a special needs childhood into a special needs adulthood. Halfway through the process I thought, this should be a book. I didn’t want all the personal and factual information that I had acquired to get lost somewhere. The feedback I was receiving from blog readers clearly indicated the usefulness of the posts. I concluded that our family’s experience could be of value to others.

As a therapist I focused not just on the challenging pragmatics of that year, but as a parent wading through the morass of feelings triggered by the journey. In my book I constantly dip into the past life rearing this “child of difference” to offer a long range perspective so folks beginning the journey would know that we were not any more equipped to handle the complexity of challenges than they.

I was particularly surprised when parents of “typical” kids were impacted by my posts. Much of what I describe as my challenges as a parent of a special needs child and a parent of a sibling of a special needs child, rang true for them as well. They were often relieved to know that they weren’t the only ones who were grappling with parenthood.

 

We loved reading how your story affected other families. What have you learned from other parents that have shared their story with you?

At least half of the guidance I received from others came from other parents. The other half clearly from specialists, aids, “angels” as I call all the many who guided us on this journey. But parents of special needs children are a godsend. Sometimes I would just pick up ideas as I did overhearing a conversation by two parents sitting on a bench near me at a Special Olympics swim practice. The inspiration to send our daughter to a sleepaway camp, which was perhaps one of the most significant steps taken by our family, came from just such an incident. It hadn’t occurred to me that this would be possible until that moment.

All kinds of suggestions come from chatting with other parents. But even more, parents of special needs kids need each other desperately. Worries about being judged or the discomfort of the platitudes often extended with kindness by “typical parents” make sharing are stories with them uncomfortable. Also the pity that I encountered or the “you are saint” type offerings were so awkward, painful and though kindly, frankly useless. Parents in the trenches of raising a child of difference get it, share the humor and the absurdity of many situations and offer acceptance of the ambivalence we can feel about these children. We love them but… and the guilt, perhaps one of the most painful components of special needs parenting, that shadows us throughout the tough times with these kids.

As people who have dedicated their lives to helping young adults with disabilities we rely on a team approach from many professionals, parents, and community members.

 

Who has been the most helpful advocate for you and your daughter?

Throughout my book I refer to “angels” and “it takes a village to raise a special needs child.” There are school aids who gave everything but their own blood to our daughter. Special education teachers, speech therapists, O.T.s, a P.E. teacher who taught our daughter to swim, folks from our daughter’s equestrian program Pegasus, organizations such as SPHERECT.org, her provider agency Ability Beyond Disability, Gordie Felt, the director of Camp Northwood, and the incomparable expertise of our daughter’s boarding school Riverview whose faculty and administration brought such dedication to their jobs. I was that parent who asked for attention for our daughter and these groups provided it. Our local school system too came through, though having a special needs child in the public school system (our daughter remained in public school until sixteen years of age) requires constant attention to every detail and communication with faculty. And when I needed to remove our daughter from their “care” and send her to Riverview, I fought for that but never with acrimony. I was so grateful to them for all their hard work with our daughter over many years.

Much of what you get from people is also what you give them. As an individual in a helping profession, I understood that the people who worked with my daughter were dedicated to doing the best they could and it was my respect for their skills and dedication that I think helped me to get the best for our daughter from each of them.

As caretakers we always ask for advice before advising others.

 

If you could give only one piece of advice to a parent, what would that be?

Well, I will give you two interconnected pieces of advice.

The first piece: Start early to prepare for the possibility that your child may never live independently, a very painful process which I address throughout my book. Practice “letting go” so when that day comes, you are as prepared as a parent can be for your child’s leap into a special needs adulthood. Nothing will prevent you from having fears, but use those fears to energize you. Don’t rely on magical thinking, silver bullets, denial and avoidance. Be compassionate with yourself while at the same time taking the steps that you need to take to get from “here to there.” Talk to anyone and everyone and follow the breadcrumbs that lead to a good outcome.

The second piece: Protect your “typical” children by ensuring that their special needs brother or sister will be safe and stimulated in their adulthood without being dependent on their brother or sister. The vision that my son might have to be responsible for our daughter for the rest of their lives haunted me and focused me on the future once I realized/accepted that our daughter’s adulthood would be “special.”

Those two factors propelled me to start early and work hard to secure a safe future for our daughter for both her sake and for the sake of her brother.

©Jill Edelman, M.S.W., L.C.S.W. 2013