Parenting Adult Special Needs: One Day At A Time

Your Child Is Coming Back To A Town Near You — Or  Maybe They Never Left: Our daughter is graduating this June from a special education boarding school and returning to her home state of Connecticut after five years living with peers in a dormitory setting where all needs were met: academic, social and vocational. Now at 21 years old, according to Connecticut’s state law (each state has its own “age out” number, some are 22), our local school system is no longer responsible for her educational and special needs, and by extension, nor is any other school setting. Instead, our daughter is now in the hands of the Department of Developmental Services (DDS), SSI and other non-profit and governmental bodies.

Raising a Special Needs Child to Adulthood. What you need to know to get them to this point: I believe our daughter and her parents are the lucky ones. She is 4’8″, dazzlingly witty, pretty, knowledgeable in many areas, competent with most age appropriate technology and social networks, and has acquired essential skills for daily life with supervision. As her parents, we followed the path that educators, legal experts, social service providers, and neuropsychologists advised us to follow. And it all worked. Identified by 3 years old as having a panoply of special needs, the usual stew of speech and language delays/ disorders; motor delays/disorders; sensory integration delays/disorders, (she eventually outgrew the “delays” category), we were advised to have her tested while under the age of 18 to enable her to receive DDS services when she “aged out” of the educational system. Now that day has come and our daughter will receive  residential, vocational, medical and other services that will ensure her a safe life long after we have moved on. Fingers crossed. Prior to her 18th birthday, we removed whatever funds were in her name so that she fulfilled the requirements of SSI and medicaid and when she turned 18 years old, we retained full guardianship (states vary in this and you need to know your state’s options), which our daughter was comfortable granting us, as was the Probate Court. All these steps help to  qualify her for something called a Waiver which is an essential, beguiling but unrevealing term for the state and federal relationship regarding funding. Whew!

Did We Know Where We Were Going Or What This Would All Look Like? NO! We just followed a trail.

Essential Bridges to Cross: Looking Back: My husband and I crossed over several crucial bridges on route to our daughter’s “independent living” stage. The first was the bridge to acknowledging “something is wrong” and seeking out experts to confirm or disqualify this concern. This is brutal. But we did it when our daughter was not yet two and one half years old. The next bitter pill ingested after swallowing the fear and grief  that realization introduced, was entering the special needs world. By middle school, we had accomplished the tasks of shifting our identities to “parents of special needs” as well as parents of a “typical child who has a special needs sibling”;  developing a small network of like parents with similar challenges; bringing our daughter into the activity world of special needs such as Special Olympics swimming and Pegasus riding program; attending PPT’s and advocating for services; and culling out the friends who can handle our special needs child and her melt downs and those who cannot. Needless to say, none of this was easy. Which is another way of saying, all of this was tough. But doable. All of which led us to the next critical bridge to cross.

Bridge 3: Clearing the path towards “separation”: Never one to believe in my invincibility, I felt a certain urgency regarding our daughter’s need to be able to make it in the world with others. In that vein, by her seventh grade, I latched on to the notion of summer camp as the means to begin the phase of letting “strangers” take care of  her. This was a wrenching but muscle-building challenge for all. The Coupledom, that third entity in which the domicile of the relationship resides, was challenged by this and other decisions. My husband and I did not always agree on our pathway and camp triggered fears in my husband that our daughter wouldn’t survive the bus ride to the camp site, let alone a five week summer stay. But she did, though much later that summer the counselors confessed that during the first week, they figured her to be one of those two or three who wouldn’t make it through the summer.

We Crossed With Help: Sending her to a special needs camp seven hours north for five weeks the first summer, and seven weeks the following three summers led us across that third critical bridge towards our daughter’s “independence”. But we did not do this alone. The middle school special education specialist provided a customized curriculum for our daughter that utilized the camp web site to expose her to the setting, the activities and even photos of counselors and campers. It wasn’t only our daughter who needed support, as parents we were trembling in the wings too. That the “experts”, school teachers and counselors believed she could do this, emboldened us in our efforts to see this through.

Bridge Crossing #4: A school away from home. The last bridge crossing, to this point, was the easiest. Having survived her first summer away, our daughter had set in motion a range of possibilities and when her first year at the local H.S. revealed that her increasing social needs and painful disappointments were leaving her lonely, isolated and frustrated, the move to send her to the appropriate special education boarding school with true peers, was, as they say, “a no brainer” for her and for us. Five years later, having received outstanding academic, social and vocational training, meeting all the needs of “friendship” and “romance”, our daughter returns this June to her home state to begin “adulthood”!

Real Life and Blogging It: This is a new chapter for all of us. It involves agencies, a roommate, housing challenges, vocational and social exploration, and most daunting of all, the unknown replete with all the hobgoblins of every parental nightmare. The many professionals, and para professionals who have played incredibly significant roles in bringing us to this point, deserve our praise and gratitude. But now, the stage is set……and we must all play our parts.

Daily Reports: As a parent of adult special needs, a therapist and someone who thinks sharing can be helpful, I plan to post each day on some aspect of this journey. Perhaps others who are also on this path can offer feedback, funnel ideas, questions and information. And those who are just beginning this journey fraught with challenges, whose children are so young that the thought of “independent living” is terrifying, may gleam from our experience the possibilities, the pathways, what to avoid and what to take on, what might be useful. In all cases, the unique yet fundamentally intrinsic role of parenting, special needs or other, requires the trajectory from holding close to letting go, a time to protect and a time to respect.

Will we know the difference? I hope so.But there is one distinct difference with special needs parenting: Nothing can be left to fate.

Note: This is the first post in my daily series, One Day At A Time: Parenting Adult Special Needs.

©Jill Edelman, M.S.W., L.C.S.W. 2011

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