A Humbling Journey with Warts and Blemishes for All To See: Part 2: 3-27-12

Jeez What An Adjustment: Since our daughter moved into her CRS on August 1, 2011, I have struggled to define the parameters of my role as mother in the new order. The fact that as of July 1, 2012 our daughter has become the responsibility of the State of Connecticut and a client of Ability Beyond Disability who manages all aspects of her day to day living, while her parents, the legal guardians, live just eight miles away, has proven to be a challenging adjustment for me and one that revealed my many warts and blemishes for all to see. One could say that it has been a humbling journey.

Captain of The Ship: As the primary engine powering much of what has culminated with the successful launch of our daughter’s adult life, my focus over the two decades was not on my journey but rather on getting our daughter to her destination, and of equal importance, the impact of that journey on our other precious child, her brother, as well as my husband, our marriage and the family as a whole. Throughout these twenty plus years the message that I distilled from other parents, underscored by experience, was, “You are the expert on your child and her best advocate. Never leave anything solely up to others. You must be there at every turn.” It was up to me, as the designated parent who was in the trenches with our daughter day to day, to bring her to a place of safe happiness in adulthood, to protect her brother’s childhood and future adulthood and with my husband to provide some sort of safety net around our children, to the best of our ability, for the day we were no longer around, a goal common to all parents.

Unending Support: I was not alone in this journey. I have always had the unending support and wisdom of my husband, who handed over to me the power to lead the journey and the confidence to trust myself. I have been the grateful recipient of the unfailing love of extended family, and the excellent guidance provided by educators and therapists, angels and aids. But I learned in those first years, partially blindfolded by ignorance and stumbling in the dark, that I had to captain the ship and determine its course at all times. This role of “leadership” was new to me. The youngest of three girls, I had always taken direction from others. Now I had to determine direction for someone else where the stakes were so high and the terrain completely alien. This was my first major adjustment as a special needs parent and now, with the shift to parenting a special needs adult, has come another very complicated adjustment, which almost required unlearning all that preceded it.

A Guest In Our Daughter’s Home: Posting for “Parenting Adult Special Needs: One Day At A Time” these twelve months has yielded an unexpected and often startling window into a raw and often unattractive view of myself as I shifted from Captain of my daughter’s ship to being a Guest In Our Daughter’s Home. Sometimes I felt as if the last twenty years of training to be that ever present and alert parent of a child with disabilities had created a monster, a Mrs. Frankenstein of the special needs kingdom who made folks tremble when she came into view. All my warts and blemishes were on display as I shot off email after email questioning a minor lapse in our daughter’s care or schedule, some slippage or miscommunication related to a volunteer opportunity or a doctor’s visit.

Losing Control: Who is this nut? Yet I knew, and other special needs parents’ reminded me, this is being your special needs daughter’s mom. True. But also it was a kind of post-traumatic stress disorder, also typical, I believe of parents like me. Twenty plus years of living with what could go wrong, and often did, dramatically, leaves tracks embedded in the visceral memory and as with PTSD, (I know, an overworked diagnostic category these days) at any moment, something in the present can trigger a reactive perception that the past is happening again. I was losing control of our daughter’s destiny and that filled me with anxiety, and I needed time to make that O.K.

Reality Again: There were many startling moments when that reality began to materialize. One of the first was when our residential coordinator diplomatically informed me, in anticipation of our daughter’s moving into her apartment, that it was best to call ahead and clear the schedule with staff before visiting our daughter’s home. We were now “guests in our daughter’s home” and required clearance; no pop-ins. We had married her off to ABD and the residential staff were a kind of spousal entity. I understood immediately. This is the respectful and appropriate behavior for any parent when their child moves out of the parental home into their own abode. As always, there was relief too as this boundary, parameter, marker was clarified. It freed me from some of my responsibility.

A Burial Plan? Another visceral pang of parenting change came when the same administrative staff person asked if our daughter had a burial plan, which was simply a question related to identifying any funds in our daughter’s name, which, if not handled properly with full disclosure, could jeopardize her entitlements. But it raised in me the question, who decides her final resting place, something I had actually never even thought about. The state? Her guardians? Yes, her guardians, perhaps a spouse even. Adjustments and a reality a bit too painful to integrate quickly.

The Blurred Edges of the Mother’s Role: There was much that wasn’t clear over the twelve months. The other mom and I picked out the apartment for the girls to reside in, as this was not a group home but a CRS (Continuous Residential Support), which allowed us to do so. We even have our names on the lease and went with our daughters to select the furniture that would became the bones of the home, set its decorative tone and represent our mutual tastes. However, once the girls moved in, it was staff who added the accessories, picked out a rug and curtains, initially asking our permission, and in fact, actually trying to help to take the pressure off of us. Yet it remained confusing. What if I didn’t like their choices? But if our daughter did, it was really no business of mine now. And then, who sets up doctors’ appointments, goes to the appointments? When do the parents get feedback on those appointments if they are not present? When should we visit our daughter, or set up dates to see her? Whom should I speak to about “issues” that our daughter has texted me about it, or called me in distress to register her anger or hurt? With the day staff who are present when I call or visit, or their coordinators? Do I try to find volunteer opportunities? Can I really leave it to others?

An Intensive, Microscopic Instrument of a Parent: Was the other mother like me? I don’t think so. So was it just me? My personality warts and blemishes surfaced, revealing myself to be a mom I often did not like: interfering, judging, stressed out and demanding. Ugh! What was the heart of the problem? I think I now know, after eight intensive months of adjustment – trust! As I wrote in an earlier post, it takes time to build trust that others will be knowledgeable enough about your child to keep her happy and safe, something I have attempted to do these last twenty-two years. And believe me, I have never felt “perfect” a day in my life, never. So did I expect “perfection” from them? No, but they did not know her as I did and that worried me. How long would it take them to know her? And would they feel what I have felt all these years: committed, determined and devoted to her care? Specials needs children require a fairly intensive microscopic instrument of a parent/persons to do the job well. Were these people up to the task? As it turns out, thankfully, they are!

Finally, Why Am I Writing About Me Here? These posts were written for the parents, are about “Parenting Adult Special Needs”, the parents’ quest to bring their child to the threshold of adulthood, safely and successfully. That has been the focus and purpose of the posts, and has led me to draw an honest picture of one family, one child, and most personally, one parent’s perceptions and experiences of that journey. I have been accused during this process of being too “I” oriented, selfish and narcissistic, and falling short of being the caring and devoted parent that a special needs child deserves and requires. I can understand how some pulled out that image of me and though it didn’t feel good, it felt honest and fair. I have behaved at moments insensitively and unfairly to others and I have apologized with sincere feelings of regret and remorse. But I know that when I felt threatened that our daughter might not be sufficiently protected, though my fears proved unfounded, my primitive response was fight, not flight. The stakes are high when you pass your child’s destiny over to others, for the rest of that child’s life. This was no summer camp or boarding school. This was adulthood; though not set in stone, still she was out of our arms and into the world, just like that!

Being a parent or a parent of special needs doesn’t mean being pure, always sacrificing and self-effacing. It just means striving to be the best you can be for that child, while still being a person in your own right, your own skin, with the weight of baggage from your pre-parental life in tow. We don’t come into this parenting business free of personal imperfections or inclinations. No way. It is an often heard yet ridiculous notion that just because you parent a special needs child that you are a saint or need to be one. My wish is that these posts have provided a practical template for a parent to use to aid them in their child’s journey, a portrait of sorts presented with all the warts and blemishes that make up even special needs parents, imperfect mortals that we may be.

Thank you all for taking the time to share our journey. The journey continues and may in fact bring me back to posting on it in the future. But for now, Adios.

©Jill Edelman, M.S.W., L.C.S.W. 2012

A Note from Jill’s “Blogger Guy”: This concludes the series of posts, Parenting Adult Special Needs One Day At A Time. We want to thank everyone who took the time to share Jill’s journey with her. Please check the blog tomorrow for a piece of news we hope you will find both interesting and exciting, and maybe even a little bit rewarding.

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