Confusion Looms: 4-8-11

Grey Choices:  Making decisions when grey is the color of the moment, is tough for all of us. Our daughter is at a crossroads of such a situation.

Summer Planning is Obtuse: Eluding us is a concrete aged out plan for the summer due to funding delays. Question: should our daughter return to her school for their summer camp after graduation in June, or remain at home while programming and residential planning is taking shape?

Pressure Pushed Action, Prematurely Perhaps: A call to the school revealed that summer camp was filling up quickly.  Under pressure, and with the advice from service providers, I sent the deposit check to secure her spot.

Yesterday when she called, I told her the news.  What we thought would be welcomed news, was just confusing news. “But what about Pegasus?” a hour week program she would resume this summer after a five year hiatus. Oops!

Whoosh: Mini melt down on the phone as  confusion settled in on top of a “rotten day”, a verbal skirmish with a classmate, and a bit of “burn out” from sheer exhaustion.

Shades of Melt Downs Past: What mom doesn’t feel like a rotten egg when her child takes a dive from something mom has said or done? But we did regroup beautifully. And over the years, “mini meltdowns” have shrunk in magnitude, are very short lived and usually followed by constructive ideas and apologies on both our parts.

A Plan In Place to Make a Plan: Always quick to search out support for a challenging process affecting our daughter, I put a call in to her advisor and by the next morning the three of us had a conference call focused on assembling a list of pros and cons for summer camp or summer home.

The Third Option: In addition to option 1 and option 2,  camp vs home, I offered a third option:  “Hey you know, this is a complicated one. It is also OK to decide to let mom and dad make this decision for you this time, if you want.”

Diplomacy in The Daughter: “I’ll think about it on Saturday and let you know.”

©Jill Edelman, M.S.W., L.C.S.W. 2011

To My Readers

Thank you so much for continuing to read The Couples Tool Kit. As you may have noticed, I have embarked on a new journey, and I wish to reassure each of you that I will continue to write about issues of importance to The Coupledom.

Parenting Adult Special Needs: One Day At A Time
After 5 years at a special needs boarding school, our 21-year old daughter is “aging out of the school system” and returning to her home state to begin a new chapter in her life as an independent special needs adult. I will be writing daily posts which chronicle aspects of that journey from a parent’s perspective in the hope that our family’s experience dealing with the complexity of bureaucratic, practical and emotional issues will be of use to others.

For new readers who would like to catch up on this series, you can find them here in chronological order. To receive each new post by email, please subscribe to my blog.

Parenting Special Needs: Find a Mutual Passion: 4-7-11

Bonding and Passion: Follow Their Bread Crumbs. I was thinking about how I discovered the key to managing a young defiant special needs child. For many many years our daughter was resistant to most activities outside the home except shopping. She loved the mall. At 2 years old she could go through the racks of any department or chain store like a fifteen year old valley girl. I felt this was genetic. My husband’s genes.

My sisters-in-law are great shoppers. Not I. But once my daughter and I stepped out of the house, into the car, on the way to the Mall, we were of one mind: shopping, her shopping. She taught me as early as age 2, 3, 4 years old, the joys and sorrows of shopping.

Not to say that she didn’t melt down on escalators or over stuffed animals. She did. I often thought someone would arrest me as I openly struggled to contain her rageful outbursts when, after three hours of  shopping, she was told, it was time to go. But no one ever did. You know, sometimes I wasn’t sure what I wished for more: arrest or remaining responsible for the raging one.

We bonded around picking out gifts for cousins, acquaintances, and friends’ dogs. This child who was struggling with receptive and expressive language, anxiety, and a host of other challenges, had no difficulty selecting a dress for me. Or a gift for her many aunties. Her visually acuity and color sense were off the charts.

At the mall, we shared a passion: my love for her and her love for shopping. She loved and to this day, still does, clothes, brand names, and the sights and sounds of chain stores and food courts.

Lesson Here: Whatever their passion, join it. Horses and clothes, rats and guinea pigs, pet stores at home and abroad.  We did it all. And of course, humor. Where ever we wander, to this day, we find laughter, my passion.

©Jill Edelman, M.S.W., LC.S.W.

Are We There Yet? 4-6-11

Purpose, Patience and Perseverance, The Three P’s of This Process: A fellow parent from my daughter’s school emailed yesterday with questions regarding the aging out process. Her daughter is a fellow schoolmate of our daughter, one year her junior and from a different state.

As I responded to her email a bunch of memories flowed in. In fact, we actually started this process over twelve months ago after our school’s “transition weekend” programming which offers information on how to best navigate this chapter. A group of Connecticut parents with similar interests joined together to visit a service agency, meeting with different specialists in residential and vocational, as well as a visit to a condominium complex in a town with sidewalks and easy access to shopping, movies, library, and transportation. We added a visit to an attorney in the area as well as a real estate expert.

The hope was to find a match in funding allocations, geography and personality. It all failed. A combination of variables resulted in mission unaccomplished.

Twelve months and seventeen years of preparation to this point, I am still learning, meeting great people and sharing bright and bitter moments. Are we there yet? Nope, but a lot closer.

Today’s Homework: Finding out more than one would ever chose to know regarding “rent subsidy”, HUD, including reams of forms adding more unfinished patches to the crazy quilt of a future for our “special” gal.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Apartment Hunting and Oprah: 4-5-11

Today looked great: The “Other Mother” and I went to look at an apartment in the desired location, a nearby town with excellent services and a wonderful adult special needs community. We had visited an affordable housing site a week earlier in a less desirable town.

The apartment we visited today was perfect.

Three hours and many phone calls later, we thought it safe to sign an offer…to be followed up by a visit to the unit by our case manager and the person in charge of residential for the agency who would service our daughters. Any housing has to meet required safety and other standards in addition to funding ceilings.

We were super excited but it wasn’t meant to be. Small glitch, unbeknown to the real estate agent, the unit had rented two days prior. Crestfallen.

On another note, an article of interest appeared in the New York Times today: Zach Anner, a twenty-six year old comedic talent with cerebral palsy, won a competition to have a show on the Oprah network. Zach’s challenges center on issues of mobility. He lives life in a wheel chair. But whether physically or intellectually challenged, the rules are the same.

In Zach’s wise words:

“My best advice to anybody who has a child with a disability is to really find the tools for that person to thrive and find what their true passions are, because the rest will follow.”

©Jill Edelman, M.S.W., L.C.S.W. 2011

Funding: A Cautionary Tale, 4-4-11

Vigilance Required:  As we approached our daughter’s 21st birthday, and subsequent aging out of our school district, we considered whether an out-of-pocket third post secondary year at her special education boarding school, would be indicated. “Out of pocket” 100%! Our local school district has funded an important portion of our daughter’s education for the last five school years,  However, now that she is 21, that is over. As a result, we had to weigh what would make sense, pay for another year of vocational and academic education in a very protected and familiar environment, with a greater  financial cost to our family, or bring her back to her state and begin her “independent living”?

A Significant Factor: Perhaps the most significant factor in this decision making process was the “cautionary” warning by individuals “in the know”,  who advised us to bring her back NOW! To begin specific funding requests for age out, because the relevant departments, state and federal, are seeing a diminishing of available funding for age outs.

The Desire to Postpone: Putting off  the day when our daughter would “live independently with supports”  is so tempting. It doesn’t take much imagination to guess how scary this chapter is for us, particularly after five fear-free years while she was away .

And For Her: During her recent Spring break our daughter cried and blamed us for making her “leave the “school I love and all my friends”…and outrage that she wasn’t given a choice. 100% right! As always. I love how she cuts right to the chase. So smart, so right on, so clear. Awesome Gal.

Clearly we have made the right decisions for her before. Let’s hope we are making the right one for her now!

©Jill Edelman, M.S.W., L.C.S.W. 2011

Having A Comrade Helps: 4-3-11

Our daughter is matched with another young lady to share an apartment (a CRS), and supervisory staff (utilizing the same service agency, required,  and a common DDS case manager, helpful but not necessary). Two young ladies together is good. For funding and other reasons, three would be better but no other match exists at this time. Matches depend on age out priority status and need level funding, geography, parental readiness, and enough similarities in skills and interests. And yes, the young ladies have met several times and like each other, so far.

Worries regarding compatibility. You bet!

The good news is that  I have a comrade, the other mother, to share the journey. Looking at apartments, meeting with the agencies, figuring out what patches to place in our daughters’ crazy quilt of a future. She is the yin to my yang. Pragmatic, focused and  decidedly younger. Lucky me.

By the way, Parade just did an article today about aging out of the system. You may want to take a look at it here.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Crazy Quilt, 4-2-11

The actual date of the allocation of funding for our daughter’s new life remains elusive due to the labyrinthine nature of bureaucracy. Slated as a “priority age out”, that is, 21 years old, and having lived outside the parental home, with a sufficient level of need, our daughter is in a good position to receive the necessary funds, along with another young lady of comparable abilities and priorities, to set up a two bedroom “affordable” apartment with services and supervision in a nearby town. My daughter calls to ask if she will be moving into her new life this summer. I don’t have the answer yet.  Our case manager and service agency coordinator will meet with the powers that be next month. This is like a crazy quilt…I cannot even imagine how all the pieces will fit together.

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