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aging out of the system

The Busy Life Of A Special Needs Adult: 6-25-12

The Busy Life Of A Special Needs Adult: 6-25-12

By Jill Edelman M.S.W., L.C.S.W . 06/25/2012

Swimmingly: In the last six weeks our daughter’s special needs adult life has been going along swimmingly, pun intended. She participated in Connecticut’s Special Olympics aquatic state finals, including spending two nights in a Southern Connecticut State University dormitory. She received a medal for her excellent riding (her “seat” as they call it) at the […]

Mom, I Know I Was Born With Eggs: Parenting Adult Special Needs One Month At A Time

Mom, I Know I Was Born With Eggs: Parenting Adult Special Needs One Month At A Time

By Jill Edelman M.S.W., L.C.S.W . 05/17/2012

Checking In: More than six weeks have gone by since I last posted on our daughter’s adult special needs life, and a busy six weeks indeed. During that time our twenty-two-year old daughter started a new volunteer job at Best Friends in Norwalk, an animal daycare and grooming center, and continued her two other vocational […]

News, and a Special Opportunity for My Readers

News, and a Special Opportunity for My Readers

By Jill Edelman M.S.W., L.C.S.W . 03/28/2012

Dear Readers, as you well know, it has always been my intention to use my journey as a parent whose special needs child was “aging out of the system” to help others who were not yet on that path, or even as perspective for those who were. This was primarily because there are few, if […]

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

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

By Jill Edelman M.S.W., L.C.S.W . 03/27/2012

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 […]

A Year’s Journey From All Sides Now:  03-26-12

A Year’s Journey From All Sides Now: 03-26-12

By Jill Edelman M.S.W., L.C.S.W . 03/26/2012

All Sides Now: There is no easy way to end this series of posts on parenting adult special needs. Do I summarize, itemize, measure growth, anticipate challenge or celebrate accomplishment? Do I thank and applaud or alert and inform? Shouldn’t I be doing all of that? My hope is that I have done all of […]

Closing In On A Year & Building Trust: 3-12-12

Closing In On A Year & Building Trust: 3-12-12

By Jill Edelman M.S.W., L.C.S.W . 03/12/2012

March 30, 2011: In a little more than two weeks it will be a year since the first post on Parenting Adult Special Needs: One Day At A Time. Last week our daughter’s entire team of staff members from ABD (Ability Beyond Disability) and her DDS (Connecticut Department of Developmental Services) case manager sat down […]

Social Graces and Seven Months: 2-27-12

Social Graces and Seven Months: 2-27-12

By Jill Edelman M.S.W., L.C.S.W . 02/27/2012

Demo Day: Saturday our family attended “Demo Day” at the Pegasus Equestrian Center in Brewster, New York, where our daughter, along with other students, demonstrated her equine knowledge and skill acquired in their “Horse & Me” winter “unmounted” program. At the stable, each student in her class stood by a horse while they and their […]

Who Defines Disability? The DSM V and Autism: 1-23-12

Who Defines Disability? The DSM V and Autism: 1-23-12

By Jill Edelman M.S.W., L.C.S.W . 01/23/2012

Who Defines Disability: The New York Times last week published two articles back to back regarding the controversy in the medical and special needs communities over the revamping of the Autism Spectrum diagnoses including Asperger’s Syndrome and Pervasive Developmental Disorder NOS (“not otherwise specified”) for the 2013 publication of the DSM V also known as […]

Uneven Terrain: 12-19-11

Uneven Terrain: 12-19-11

By Jill Edelman M.S.W., L.C.S.W . 12/19/2011

Ducks In A Row: Our daughter had a superb week, all ducks in a row, clear, cool weather including a day of Christmas shopping with mom at the mall, followed by an unexpected outing with both parental members to the Yale Museum of Art yesterday. Her apartment-mate was under the weather, which left our daughter […]

Two Lady Grumps With A Lot To Share: 11-3-11

Two Lady Grumps With A Lot To Share: 11-3-11

By Jill Edelman M.S.W., L.C.S.W . 11/03/2011

Senior Residence: Surprise, Surprise, Ridgefield Crossings start date has been delayed another week due to power outage. Still waiting to hear from Roar, postponed last week due to Ringworm. These vocational settings have been fraught with problems, though the trustworthy Complete Cat Clinic has remained steadfast and true so far. Medicaid Update: Looks like the bureaucratic glitch […]

Oldies but Goodies: Parenting Adult Special Needs: One Day At A Time

Oldies but Goodies: Parenting Adult Special Needs: One Day At A Time

By Jill Edelman M.S.W., L.C.S.W . 09/30/2011

Jill is taking a break from her daily posts tonight and tomorrow night, so since it’s Rosh Hashanah and the start of a new year, we thought it was a great time to revisit the very first Parenting Adult Special Needs: One Day At A Time post from March 30, 2011. Excerpt: Your Child Is […]

Purposeful Blogging, Pass It Along: 9-15-11

Purposeful Blogging, Pass It Along: 9-15-11

By Jill Edelman M.S.W., L.C.S.W . 09/15/2011

Get Started Now: Our daughter has been participating in the Ability Beyond Disability adult program for 2 plus months with the residential piece in place for the last 6 weeks. As I track this transition to independent living with supports, I am mindful that readers who have more recently joined this narrative may not benefit […]

A Celebration For The Artists:  9-9-11

A Celebration For The Artists: 9-9-11

By Jill Edelman M.S.W., L.C.S.W . 09/09/2011

Sphere Art Program: The Ridgefield group SPHERE had their end of summer art show last night. Our daughter’s many pieces were displayed including the papier-mâché dog head. She and her apartment-mate greeted us in the Lounsbury House, the 1896 mansion on Main Street that serves as Ridgefield’s elegant community center. SPHERE board members were taking […]

A Visit From DDS: 8-10-11

A Visit From DDS: 8-10-11

By Jill Edelman M.S.W., L.C.S.W . 08/10/2011

Yesterday’s News: Our outstanding Connecticut Department of Developmental Services case manager visited the young ladies’ apartment yesterday. She sent me an email to express how much she liked the apartment, how happy the girls seem to be and what a wonderful job Ability Beyond Disability has done in fulfilling the record keeping requirements of DDS. […]

Funding A Life and Some Polo Play: 8-7-11

Funding A Life and Some Polo Play: 8-7-11

By Jill Edelman M.S.W., L.C.S.W . 08/07/2011

Polo and Work: Dad reported wonderful things about our daughter’s Pegasus riding yesterday. The students were mimicking polo play, holding foam sticks aimed at balls on cones; even the horses were being trained to nudge the balls off the cones. She trotted, rising high in her saddle, followed by leaning so far forward that a […]

The Quesadilla Maker: 8-6-11

The Quesadilla Maker: 8-6-11

By Jill Edelman M.S.W., L.C.S.W . 08/06/2011

The Redheads Come To Call: One P.M. yesterday, just as advertised, our visitors rang the doorbell at our daughter’s new apartment. Mother and daughter drove 3 plus hours southwest to welcome our daughter to her new home. They came bearing gifts in colorfully wrapped packages, both eager to support our gal’s new life. Our daughter […]

I Like This New Phase: 8-3-11

I Like This New Phase: 8-3-11

By Jill Edelman M.S.W., L.C.S.W . 08/03/2011

Dropping By: I like this new phase. Daughter lives twenty minutes away and requests some items. I drive over and drop off the items; we chat, go over her requests, I watch her proudly hang up her chains and bracelets on the jewelry lady stand the staff gave her, and then I leave. Pretty darn […]

Successful Launch: 8-2-11

Successful Launch: 8-2-11

By Jill Edelman M.S.W., L.C.S.W . 08/02/2011

Celebrating With Balloons and An Earache: Truly all went smoothly yesterday. Aside from an earache, probably swimmers ear (she is being taken to her doctor today by staff, amazing), the move-in was a triumph of coordination and readiness. Seven ABD staff members were present, setting up, cleaning or just greeting our daughter and her apartment-mate […]

A Poignant Passage? 8-1-11

A Poignant Passage? 8-1-11

By Jill Edelman M.S.W., L.C.S.W . 08/01/2011

Or She Is Just Growing Up? Our daughter doesn’t seem to be registering this transition as different from her return to boarding school each semester. Nor does her dad. The great leveler of all things emotional, he describes the process as signifying that “She is just growing up.” True, but somehow there is some legality […]

The Chocolate Fountain and Mom’s Cognitive Confusion: 7-31-11

The Chocolate Fountain and Mom’s Cognitive Confusion: 7-31-11

By Jill Edelman M.S.W., L.C.S.W . 07/31/2011

The Summer of Love About To End? Tonight is the final night home…tomorrow’s dawn introduces the new regime. For six weeks our daughter has conducted two on again, off again summer romances via cell phone conversations, Facebook and texting. Once she moves into her apartment new rules apply. This social romp, with no face-to-face encounters […]

Night Time Fears: 7-30-11

Night Time Fears: 7-30-11

By Jill Edelman M.S.W., L.C.S.W . 07/30/2011

A Team of Caretakers: Ability Beyond Disability, our service provider agency, is hoping that the program developed for our daughter and her apartment mate will serve as both a template and a model program in the State. Utilizing the CRS residential category (a Connecticut Department of Developmental Services (DDS) model that translates to Continuous Residential Supports For […]

Bed Made, Now Sleep In It: 7-29-11

Bed Made, Now Sleep In It: 7-29-11

By Jill Edelman M.S.W., L.C.S.W . 07/29/2011

Apartment Ready: Yesterday our daughter worked at the Ridgefield Library straightening out the books. She also went swimming with her job coach at the Ridgefield Park and Recreation. All is proceeding beautifully. They then had a brown bag lunch (my daughter makes her bologna sandwich the night before) and came back to the family home. I […]

Haunting Scenarios: 7-28-11

Haunting Scenarios: 7-28-11

By Jill Edelman M.S.W., L.C.S.W . 07/28/2011

Supermarket Couples: The images of elderly moms and middle-aged special needs adult children walking down the aisles of local markets always haunted me. Long before I had my own special child, I would see these twosomes and wonder what would happen to this special adult when their parent died? It all seemed so sad and […]

The Red Couch: 7-19-11

The Red Couch: 7-19-11

By Jill Edelman M.S.W., L.C.S.W . 07/19/2011

So Little Time, So Much To Say: This morning, after dropping our daughter off at the Day Services Options program, the other mother and I met with the ABD service manager for DSO programming. What unfolded was most reassuring. My daughter and her future apartment-mate are two members of a newly formed group of 12 young […]

Pots, Pans and New Plans: 7-18-11

Pots, Pans and New Plans: 7-18-11

By Jill Edelman M.S.W., L.C.S.W . 07/18/2011

Outfitting For Adulthood: Yesterday, the sunny sleepy summer kind of day, our daughter was content to loll around the house, regrouping from a hectic first week of Ability Beyond Disability programming, two very social nights at home, and an energizing yet ultimately enervating sidewalk sales event the previous day. Unfortunately for her, Mom has a […]

Not All Links In The Chain Are The Same: 7-16-11

Not All Links In The Chain Are The Same: 7-16-11

By Jill Edelman M.S.W., L.C.S.W . 07/16/2011

Incomplete Cat: Yesterday I hit a wall. Our daughter’s day, an “Individualized Day” with a coach who takes her to her volunteer job, was a bomb. First the poor lady got lost coming to the house. Not a biggie. But then the placement, The Complete Cat Clinic in Brookfield, CT, didn’t know they were coming. […]

Madam Librarian And A Home In Two Towns: 7-13-11

Madam Librarian And A Home In Two Towns: 7-13-11

By Jill Edelman M.S.W., L.C.S.W . 07/13/2011

Madam Librarian: At 4 P.M. yesterday, as instructed, I showed up at the Ridgefield Library, located in our daughter’s soon to be new hometown. As most continental Americans know, July 12th, 2011, was one hot day. Our daughter emerged from the library panting much like puppy dog Wags whom I had just left at home. […]

When Something New Is Ventured And A Horse Named Milos: 7-10-11

When Something New Is Ventured And A Horse Named Milos: 7-10-11

By Jill Edelman M.S.W., L.C.S.W . 07/10/2011

Pegasus: Yesterday our daughter resumed her career in horseback riding in a pristine arena followed by a trail ride under a soft blue sky. She rode Milos, a grass-eating, somewhat distracted brown horse. She proudly sat tall in her saddle, monitoring her posture, which was one of her two stated goals, the other being staying […]

Make It Even: 7-1-11

Make It Even: 7-1-11

By Jill Edelman M.S.W., L.C.S.W . 07/01/2011

Televisions, Telephone, Wi-Fi & What Else: Ability Beyond Disability went into the young ladies’ apartment yesterday to begin the installation of Wi-Fi. Our service coordinator called to ask if our daughter would want cable in her bedroom. My preference is no. She does not have a television in her bedroom now, and with her laptop […]

Finally A Walk and A Talk And Health Concerns: 6/30/11

Finally A Walk and A Talk And Health Concerns: 6/30/11

By Jill Edelman M.S.W., L.C.S.W . 06/30/2011

The Beauty of Tarywile: With almost two weeks on her home turf, our daughter has been to appointments, visited her future apartment and apartment-mate to be, attended family functions and a local adult special needs art class but until last evening, she had not done a stitch of exercise. “I’m too tired.” Somehow, with the intoxication […]

The Strangeness Of Proximity: 6-29-11

The Strangeness Of Proximity: 6-29-11

By Jill Edelman M.S.W., L.C.S.W . 06/29/2011

Dad Visits The Apartment: Last night, for the first time, our daughter’s dad visited her soon to be new home. We set the trip mileage to zero and drove to the next town. Nine miles, eighteen minutes without traffic, between home and future abode. The tour went well and our daughter was proud to show […]

One A.M. Bedtime and Visiting Gaudi: 6-28-11

One A.M. Bedtime and Visiting Gaudi: 6-28-11

By Jill Edelman M.S.W., L.C.S.W . 06/28/2011

Late Nights, Long Phone Calls: Two weeks into our daughter’s vacation, two weeks short of the onset of programming, and the regression begins. This translates into 1:00 A.M. plus bedtime, hours on her cell with a young man northeast of here (this social contact is the good news), and resistance to “taking a walk” for […]

A Flip of a Coin and The Illusion of Permanence:  6-26-11

A Flip of a Coin and The Illusion of Permanence: 6-26-11

By Jill Edelman M.S.W., L.C.S.W . 06/26/2011

So Far So Easy: The new apartment has one large bedroom, clearly the master, with two fairly spacious closets. The other bedroom is a good size with a small closet. This could be a real challenge for two young ladies to come to terms with, but not our gals. At least not initially. A coin […]

Buying Underwear At The Mall: 6-25-11

Buying Underwear At The Mall: 6-25-11

By Jill Edelman M.S.W., L.C.S.W . 06/25/2011

My Heart Swelled: Yesterday was a pretty femme day, haircuts and two trips to Victoria’s Secret at the mall, the first at our daughter’s request to purchase undies with some graduation money. The second to buy a gift for a cousin, another Victoria fan. As we entered Victoria’s chambers, a patient rang me on the cell, […]

Knowing My Limitations: 6-24-11

Knowing My Limitations: 6-24-11

By Jill Edelman M.S.W., L.C.S.W . 06/24/2011

Spray ‘n Wash: I am chuckling now because I never knew how to spell Spray ‘n Wash until this post. I was prompted to check the spelling after I saw my daughter take the green bottle from the laundry room to the bathroom to spray her sweatshirt. Watching her spray the areas where paint from the […]

Who Will Teach Her Now? 6-23-11

Who Will Teach Her Now? 6-23-11

By Jill Edelman M.S.W., L.C.S.W . 06/23/2011

What Will Happen With Money, Time and Measurement Issues? At our meeting two days ago with the service agency, Ability Beyond Disability, I brought out one of those refrigerator-size white 3-ring binders labeled “Career Portfolio” that Riverview/Grow and our daughter have assembled over two years. The contents include her vocational evaluations from Project Forward where […]

Parents Search For The Best Package: 6-22-11

Parents Search For The Best Package: 6-22-11

By Jill Edelman M.S.W., L.C.S.W . 06/22/2011

One Size Does Not Fit All: Our family’s journey to find a suitable adult life for our daughter involved very specific steps from identifying need at an early age with the Department of Developmental Services, fulfilling eligibility requirements for SSI and Medicaid at eighteen, guardianship, and getting our DDS case manager actively involved in finding […]

Tighten The Purse Strings and A New Peer Group: 6-21-11

Tighten The Purse Strings and A New Peer Group: 6-21-11

By Jill Edelman M.S.W., L.C.S.W . 06/21/2011

A Glimpse At The Future: The Ability Beyond Disability team members responsible for staffing and planning the individualized day program visited our home this morning. A portion of the time was spent interviewing our daughter on her interests, social and vocational strengths and weaknesses and signing forms. We were also provided with an overview of her week […]

She Rocked The House and Stole The Show: 6-19-11

She Rocked The House and Stole The Show: 6-19-11

By Jill Edelman M.S.W., L.C.S.W . 06/19/2011

Happy Father’s Day: We are all happy today. Much has come together for our daughter in the last week. At her father’s birthday party, many friends celebrated the finalizing of the apartment in Ridgefield. Several either live near by her future cozy home, or work nearby. Throughout the gentle summer evening, bits and pieces of […]

Giving Away The Bride: 6-17-11

Giving Away The Bride: 6-17-11

By Jill Edelman M.S.W., L.C.S.W . 06/17/2011

Bittersweet: In conversation yesterday with our service coordinator regarding funding, we reviewed what monies would jeopardize our daughter’s qualifications for the government programs she is now receiving. A burial plan was mentioned, which she doesn’t have, but the words went through my veins like ice water. Wow, haven’t gone there before. The mere mention of […]

Keys To The Future: 6-16-11

Keys To The Future: 6-16-11

By Jill Edelman M.S.W., L.C.S.W . 06/16/2011

We Passed: DDS inspected and approved the apartment yesterday. The girls have the go ahead to move in and a set of  keys. Ability Beyond Disability expects us tomorrow to complete paper work. The phase of  “Adult Independent Living” is officially launched! Funding and Outfitting Questions: In a brief conversation with our service provider, I […]

The Little Cottage: 6-15-11

The Little Cottage: 6-15-11

By Jill Edelman M.S.W., L.C.S.W . 06/15/2011

Real Estate Suspense:  I suppose real estate transactions are more similar than different, special needs or otherwise; competing with another offer, seemingly winning the prize, but there is that inspection. Today at noon we meet with DDS at the apartment. All seems in order or easily resolved. Lease was signed. For fifteen days, until the […]

OMG We Got The Apartment, I Think:  6-14-11

OMG We Got The Apartment, I Think: 6-14-11

By Jill Edelman M.S.W., L.C.S.W . 06/14/2011

Busy First Day Of Adult Phase 1: Our daughter had her lunch meeting with future apartment mate and six ABD team members yesterday at the Olive Garden. The other mother was working so when I showed up with our daughter, the team asked me if I wanted to stay (I didn’t) but I bowed to our […]

The Blossom Award: 6-13-11

The Blossom Award: 6-13-11

By Jill Edelman M.S.W., L.C.S.W . 06/13/2011

All Graduated And Ready For Adulthood, Phase 1: A soggy but sentimental and satisfying Riverview graduation weekend is over. Our little graduate, Grow class of 2011, was awarded the Blossom award for …blossoming this year, into a pretty powerful, ever curious and learning young adult female. A conglomerate of 19 family members, from both sides […]

Off To Graduation Weekend: 6-10-11

Off To Graduation Weekend: 6-10-11

By Jill Edelman M.S.W., L.C.S.W . 06/10/2011

Suspense: The other mother and I put in our bid for the modern apartment. Alas, someone else made an offer as well. The owner has to decide which offer to take. We won’t find out until later today. I will be on the road by then, and hope to reach our daughter’s school campus by […]

The Apartment Challenge Continues: 6-9-11

The Apartment Challenge Continues: 6-9-11

By Jill Edelman M.S.W., L.C.S.W . 06/09/2011

Does It Take A Village To Find An Apartment?  What was viewed as a no-brainer a couple of months ago, finding a two-bedroom apartment in the desired complex, is now a daunting task. We have spread our search to other apartment complexes and buildings. The other mother and I, our realtor and the service manager […]

On The Brink Of An Apartment: 6-8-11

On The Brink Of An Apartment: 6-8-11

By Jill Edelman M.S.W., L.C.S.W . 06/08/2011

Victorian: The other mother went over to check out this apartment I saw on Monday in a Victorian house within walking distance of Main Street. This might work. Spacious rooms, bathed in sunlight, expansive porch and the police station around the corner. It is an authentic Victorian which means a bit old fashion and a […]

The “R” Word: 6-7-11

The “R” Word: 6-7-11

By Jill Edelman M.S.W., L.C.S.W . 06/07/2011

Slurs: I grew up in a world that was well acquainted with religious slurs, but not the “r” word. Perhaps because in the 1950’s and early 60’s, the world focused on communist threats and racial and religious inequities, leaving the problems of the intellectually challenged for the most part, out of the news. My early childhood […]

Fast And Future Friends: 6-6-11

Fast And Future Friends: 6-6-11

By Jill Edelman M.S.W., L.C.S.W . 06/06/2011

The Young Ladies Are Busy Tightening the Bond: In one week our daughter will be home, having completed her formal education. Apartment-mates to be, and without anyone’s suggestion, the two young ladies began gearing up for their future together. Age appropriately, they are connecting on Facebook, chatting about boys, and making plans for an outing the […]

Home For Ever: 6-3-11

Home For Ever: 6-3-11

By Jill Edelman M.S.W., L.C.S.W . 06/03/2011

“Hey Jill its __I am now home for ever:”   This was the message on my Facebook Wall from our daughter’s future apartment mate yesterday. After eight years away at her boarding school, she has returned to resume/begin her new life in her hometown. The joy inherent in those few words is palpable. In a week […]

Proving Need, Is It Over Yet? 6-2-11

Proving Need, Is It Over Yet? 6-2-11

By Jill Edelman M.S.W., L.C.S.W . 06/02/2011

A New Thought:  While tossing and turning over thoughts in the middle of the night, (something to do when you can’t sleep, the dog woke you up, the room is too hot, or you are a partial insomniac, which I am), a startling realization flashed through my brain, zephyr-like and fleeting. I had to catch […]

Momentum Building, It Must Be June: 6-1-11

Momentum Building, It Must Be June: 6-1-11

By Jill Edelman M.S.W., L.C.S.W . 06/01/2011

June Is Busting Out All Over:  Looks like the word is out. I am not sitting on my hands nor is anyone else. The Services Manager at ABD (Ability Beyond Disability) called to let me know she is hard at work. A lady after my own heart, she informed me that she likes to get […]

A Five Year Ritual Ends: 5-31-11

A Five Year Ritual Ends: 5-31-11

By Jill Edelman M.S.W., L.C.S.W . 05/31/2011

Holding Pattern: I think I have been in a bit of a holding pattern for the last couple of weeks. There were a series of meetings that had a finality to them: Ability Beyond Disability some weeks ago where we officially signed our daughter over to their care, come July; the Project Forward, Cape Cod […]

How Do You Translate Special Needs Into English?  5-30-11

How Do You Translate Special Needs Into English? 5-30-11

By Jill Edelman M.S.W., L.C.S.W . 05/30/2011

A Different Journey: This is the season for parents to mark their children’s passages, whether it is a “moving up” ceremony to middle school, or the great leap from college to…somewhere and beyond. It is a fun exchange of parental pride edged with some skepticism and fear. But for the special needs parent, there is […]

Count Down to June 12: 5-29-11

Count Down to June 12: 5-29-11

By Jill Edelman M.S.W., L.C.S.W . 05/29/2011

Thirteen Days Away: Sunday two weeks from today at 10 a.m. our daughter, dressed in cap and gown, will enter the tented arena for the Riverview/Grow graduation ceremonies. I have a lump in my throat and fear in my belly. Memorial Day Perspective: Tomorrow is Memorial Day and the media is a buzz with all […]

This App’s For You: 5-28-11

This App’s For You: 5-28-11

By Jill Edelman M.S.W., L.C.S.W . 05/28/2011

Tech Eval: Last summer the transition coordinator at our town’s High School referred our daughter for a tech evaluation to determine if she would benefit from iPod touch’s many apps for special needs. The answer was yes so the school purchased the iPod touch and trained our daughter over several sessions, before she went back to her […]

The Little Mermaid: 5-27-11

The Little Mermaid: 5-27-11

By Jill Edelman M.S.W., L.C.S.W . 05/27/2011

Which Mermaid Was That? Out of state friends visited some months after our daughter’s birth. I was in the throes of Disney ecstasy, believe it or not, after having seen the Little Mermaid with our son, who shared my joy. After all, what could be more reggae fun than Sebastian the crab and the hysterically evil Ursula, […]

Job Description…Mom: 5-26-11

Job Description…Mom: 5-26-11

By Jill Edelman M.S.W., L.C.S.W . 05/26/2011

Geography: A challenging component of producing a rich program for our daughter is transportation. Several interesting offerings are miles apart. Volunteer jobs in animal settings with caring and willing staff may not be easy to find and one intriguing possibility is an hour south of here. The more local option works only with cats, and our […]

All Graduations Are Tear Jerkers: 5-25-11

All Graduations Are Tear Jerkers: 5-25-11

By Jill Edelman M.S.W., L.C.S.W . 05/25/2011

Tears Galore: All graduations are moving and long. Inevitably when your child or their best buddy walks up to receive the diploma, the heart swells, and the tears spill. A special education graduation offers an additional punch. A real pow to the emotional gut. Tears for The Struggles of Others: There were several student speakers […]

Graduation #1: 5-24-11

Graduation #1: 5-24-11

By Jill Edelman M.S.W., L.C.S.W . 05/24/2011

Project Forward: This morning we are heading up to Cape Cod for the Project Forward graduation ceremony at Cape Cod Community College in Barnstable. I plan to buy some flowers or a Vera Bradley something while on the road. My husband and son are on board and our daughter is super excited. Three Diplomas: Actually, […]

Exited: 5-23-11

Exited: 5-23-11

By Jill Edelman M.S.W., L.C.S.W . 05/23/2011

Exit Meeting: Thirteen in all, most on conference call, gathered to finalize our daughter’s exit from the school system. Four institutions were represented: our district High School, Joel Barlow High, where our daughter spent her freshman year; Riverview School, the special education boarding school that our daughter has attended since the age of 16; Ability […]

Closing In On Aging Out: 5-21-11

Closing In On Aging Out: 5-21-11

By Jill Edelman M.S.W., L.C.S.W . 05/21/2011

Funding Approval: Yesterday we received word that our daughter’s future apartment mate received DDS approval to fund her part of their shared staffing requirements. This was the final patch needed for that section of the crazy quilt of future planning. Finalizing The Goodbyes: Monday we have the final PPT with our school district. Participating in […]

Taking A Break: 5-12-11

Taking A Break: 5-12-11

By Jill Edelman M.S.W., L.C.S.W . 05/12/2011

Coming Down To The Wire: Today I am off to my daughter’s school. Four hours up, four hours down. She is having a bit of  a rough patch and no wonder: this is the end of the year pressure that many students feel, special needs and typical, and on top of that, she is saying […]

Where Were The Parents? 5-11-11

Where Were The Parents? 5-11-11

By Jill Edelman M.S.W., L.C.S.W . 05/11/2011

Where Were The Parents?  While writing yesterday’s post I imagined readers thinking, “But where were the parents when their daughters’ were violated?” Those of us who raise children with disabilities know that providing 24/7 supervision is an enormous challenge. When our daughter went off to a boarding school at age 16, this pressure was lifted […]

Sex Education and Special Needs: 5-10-11

Sex Education and Special Needs: 5-10-11

By Jill Edelman M.S.W., L.C.S.W . 05/10/2011

Informed Is Empowered: Today I was privileged to attend the 2011 Champions Of Choice annual luncheon, sponsored by the National Institute For Reproductive Health and NARAL Pro-Choice of New York. Amongst an impressive roster of speakers, including Gloria Steinem, founder of Ms. Magazine and Kirsten E. Gillibrand, U.S. Senator for New York, was Dr. Laura […]

Romance and Special Needs: 5-8-11

Romance and Special Needs: 5-8-11

By Jill Edelman M.S.W., L.C.S.W . 05/08/2011

What To Expect: There is something powerfully profound about the romantic connections of special needs teens and young adults. While in the public school system our daughter had her crushes but no real chances to experience the fun of mutual flirtation. At the age of sixteen all this changed when she became a student at […]

Dating? 5-7-11

Dating? 5-7-11

By Jill Edelman M.S.W., L.C.S.W . 05/07/2011

Facebook Friends: A tremendous resource for special needs young adults is Facebook. Often the circle for these young people is limited by their cognitive difference, their inability to travel on their own and a host of other challenges. Communicating with former schoolmates and family friends, siblings’ buddies, cousins, and friends of friends, is easy and […]

Agency Transition Meeting: 5-6-11

Agency Transition Meeting: 5-6-11

By Jill Edelman M.S.W., L.C.S.W . 05/06/2011

Ability Beyond Disability:  Our service agency, aka ABD and formerly known as Datahr Rehabilitation Institute, headquartered in Bethel, Connecticut, held something along the lines of a warm and welcoming cabinet meeting. The heads of the various units met, not in the oval office, but a conference room with a great big table.  I sat at […]

Protecting The Siblings of Special Needs: 5-5-11

Protecting The Siblings of Special Needs: 5-5-11

By Jill Edelman M.S.W., L.C.S.W . 05/05/2011

The Others: I don’t know the statistics, but I would bet that most of us special needs parents have other children. I have spent a great deal of time amongst these other children, my other child, and the children of  families with whom we have shared Special Olympics or horse back riding programs, special needs […]

“Grad or Age-Out” and The Importance Of The Case Manager: 5-3-11

“Grad or Age-Out” and The Importance Of The Case Manager: 5-3-11

By Jill Edelman M.S.W., L.C.S.W . 05/03/2011

Hoping for Clarification: In the last several weeks I have had a number of conversations with moms with adult special needs children regarding what qualifies some for a residential priority placement and others not, once they reach the age when their school districts are no longer responsible for them. Keeping in mind that every state […]

Do You Have To Be Educated To Raise A Special Needs Child? 5-2-11

Do You Have To Be Educated To Raise A Special Needs Child? 5-2-11

By Jill Edelman M.S.W., L.C.S.W . 05/02/2011

Excuse Me? A recurrent question thrown out over the years of raising our daughter has been, “what do people do who are not educated like you two, and have to raise a child with disabilities?” I find that question as off-putting as the equally frequent observation that “Your daughter is so lucky to have parents […]

In Transit: 5-1-11

In Transit: 5-1-11

By Jill Edelman M.S.W., L.C.S.W . 05/01/2011

Contact in Motion: Everyday for the last three weeks our daughter calls me. This is new. She has had a cell phone for probably four years but never has she called me with anything remotely resembling this frequency of contact. Probably ninety percent of the calls are made while in transit. She is on the […]

Becoming a Consumer: 4-30-11

Becoming a Consumer: 4-30-11

By Jill Edelman M.S.W., L.C.S.W . 04/30/2011

Admission Paperwork: On Friday, May 6th, our daughter becomes a client of her service agency. The other mother and I are instructed to bring psychological evaluations, documentation of all income sources such as SSI and SSA; Medicaid and social security cards; guardianship documents; recent medical exams; lists of medications and doctors information to a meeting […]

Clarification: No Magic Wand Here: 4-29-11

Clarification: No Magic Wand Here: 4-29-11

By Jill Edelman M.S.W., L.C.S.W . 04/29/2011

Looks Easier Than It is or Was: As I continue to blog about the next chapter in our daughter’s life, I want to make sure folks know that I stumbled along in the darkness for a long time too. That pieces of this crazy quilt are slowly assembling should not obscure that I had no […]

Inspection Rehearsal: 4-28-11

Inspection Rehearsal: 4-28-11

By Jill Edelman M.S.W., L.C.S.W . 04/28/2011

Passed So Far: At the request of myself and the other mother, the service manager from our daughter’s soon-to-be service agency and a DDS representative met with the realtor and me at a 2-bedroom apartment in the complex where we hope the young ladies will reside. The purpose was to find out if this unit, though […]

Discomfort Zone: 4-27-11

Discomfort Zone: 4-27-11

By Jill Edelman M.S.W., L.C.S.W . 04/27/2011

Scathing But Essential: Yesterday’s post resonated with a number of moms who identified with the need to present their child’s abilities with scathing accuracy. Scathing in the normal world, because the flaws and imperfections, weaknesses, incapacities, seeming “stupidities” are emphasized, not the talents, the goodness nor the abilities. This is a deeply painful process for a […]

Needs Based Assessments and IQ: 4-26-11

Needs Based Assessments and IQ: 4-26-11

By Jill Edelman M.S.W., L.C.S.W . 04/26/2011

A Significant and Subtle Difference: While on the campus of my daughter’s school Sunday I ran into a mom whom I have mentioned here previously. Her daughter has two more years at school before she “ages out” into the adult special needs community. It is increasingly clear to me that a seemingly innocent evaluation by […]

Graduation Queen: 4-25-11

Graduation Queen: 4-25-11

By Jill Edelman M.S.W., L.C.S.W . 04/25/2011

Closed Stores and Opened Hearts: Our visit with our daughter was delicious. Not because we shopped until she dropped, because most of the stores at the outdoor mall she had chosen, were closed for Easter Sunday. She weathered this disappointment without a blip. In the past, this would have been a disaster. The restaurant she […]

Easter Sunday With Our Daughter: 4-24-11

Easter Sunday With Our Daughter: 4-24-11

By Jill Edelman M.S.W., L.C.S.W . 04/24/2011

Eight Hours Roundtrip: Our daughter has invited us to spend Sunday with her. She has planned the entire day. In consultation with her dorm counselors, her own excellent internet skills and keen eye for shopping possibilities and eateries, she has picked a new locale for her folks to visit with her. Empowered and Proud: You […]

Aging Out Scenarios: 4-23-11

Aging Out Scenarios: 4-23-11

By Jill Edelman M.S.W., L.C.S.W . 04/23/2011

Each One Is Different: Our daughter’s boarding school offers a transition weekend program each school year. Over five years, I attended three of these weekends. Amongst an offering of workshops on a range of relevant topics, the program includes a panel of parents whose children graduated from the school and are now in that phase […]

The Young Ladies Are Getting Psyched: 4-22-11

The Young Ladies Are Getting Psyched: 4-22-11

By Jill Edelman M.S.W., L.C.S.W . 04/22/2011

Roommates: Yesterday our daughter’s roommate joined her mother and I when we visited the two apartments. She had an Easter break which our daughter did not. There was a noticeable excitement in her face as we walked through the doorways of each apartment. Together the mom and daughter inspected closets and checked kitchen cabinets, chatting […]

Good News and More Questions: 4-21-11

Good News and More Questions: 4-21-11

By Jill Edelman M.S.W., L.C.S.W . 04/21/2011

9:09 A.M. Today: I just wanted to let you know that PRAT reviewed and approved the request for rent subsidy for both girls, effective 7/1/11!   That email came from our case manager just as the other mother and I are about to visit two potential rental sites. Timely for two reasons: PRAT approved an […]

“Oh, The People You’ll Meet”: 4-20-11

“Oh, The People You’ll Meet”: 4-20-11

By Jill Edelman M.S.W., L.C.S.W . 04/20/2011

Full Circle: Perhaps sixteen years ago or so, I attended a local meeting of parents of children with challenges. We were early in our journey and I found myself memorized by an attractive, vibrant mom whose son was perhaps eight or so years older than my daughter. She impressed me with her blunt approach towards […]

Graduation 2011: Again? 4-19-11

Graduation 2011: Again? 4-19-11

By Jill Edelman M.S.W., L.C.S.W . 04/19/2011

Another Graduation: Our daughter graduated from her boarding school secondary program in 2009. Two years later, one year shorter than many of her fellow graduates in ’09, she is about to graduate from the post secondary program. I thought we would low key this one. Her secondary program graduation brought in cousins, aunts, uncles and […]

Our Daughter’s Question: 4-18-11

Our Daughter’s Question: 4-18-11

By Jill Edelman M.S.W., L.C.S.W . 04/18/2011

Keeping Her In The Loop: Our daughter called yesterday with a question, “Did M. (our case manager) find out about the funding yet? Furthermore, “When will we know about the apartment?” I can hear both interest and excitement in her voice. An Informed Consumer: For years I have kept her abreast of the broad strokes […]

On The Same Page: 4-17-11

On The Same Page: 4-17-11

By Jill Edelman M.S.W., L.C.S.W . 04/17/2011

Vacancy: Yesterday we received notice in the mail that a vacancy for a two bedroom apartment in an affordable  housing complex became available. Sadly not in the town of our choice. Nor an area that we view as safe. The Other Mother: The notice came to our family but the decision had to be made by […]

Female and Special Needs: 4-16-11

Female and Special Needs: 4-16-11

By Jill Edelman M.S.W., L.C.S.W . 04/16/2011

Female and Special Needs: Our daughter qualifies for 24/7 supervision, so far. This designation is based on a group of factors including navigating safely while traveling to different settings; transitioning from one activity to another on time, such as sleep to work; social judgements along the lines of what to do if approached at the mall […]

Bureaucracy versus Safety: 4-15-11

Bureaucracy versus Safety: 4-15-11

By Jill Edelman M.S.W., L.C.S.W . 04/15/2011

Ceiling on Rent: I am feeling concerned regarding rent allocations. There is a HUD ceiling for a rental in our area that falls short of the current market value of a two bedroom apartment in the town that we would like our daughter to reside. To apply for a higher rent subsidy allocation, the other […]

The Alphabet Soup of Adult Special Needs: 4-14-11

The Alphabet Soup of Adult Special Needs: 4-14-11

By Jill Edelman M.S.W., L.C.S.W . 04/14/2011

Acronyms Abound: The category of housing that meets our daughter’s needs is a relatively new designation referred to as a CRS (Continuous Residential Support – different from a traditional group home/CLA “Community Living Arrangement” as CLA’s are licensed, and funding is different. The CRS “allows for more self-determination”. PRAT (Program Review….)is the body that will […]

Building Momentum: 4-13-11

Building Momentum: 4-13-11

By Jill Edelman M.S.W., L.C.S.W . 04/13/2011

A Structure Unfolding: We have momentum now. On the funding front our case manager and the services director from the service agency are putting the finishing touches on “Packages” to be presented to the funding bodies for approval. On another front, since our daughter’s decision not to return to her school/camp for the five week […]

Exiting: The Purpose of This Meeting  4-12-11

Exiting: The Purpose of This Meeting 4-12-11

By Jill Edelman M.S.W., L.C.S.W . 04/12/2011

The Final PPT:  Yesterday, I received confirmation for our final PPT, mid May. Our daughter is now about to “exit” from our school district after 13 years of being under their auspices, since the age of 3. From her entrance into an inclusion special education preschool through her freshman year at the local high school, […]

Our Daughter The Blogger? 4-11-11

Our Daughter The Blogger? 4-11-11

By Jill Edelman M.S.W., L.C.S.W . 04/11/2011

A Question of Privacy: Our daughter knows that I write a blog on couples relationships. As yet I have not told her that I began blogging on her aging out process. I figure this is a conversation to have in person, with visuals. She has enough on her plate, as they say, without adding another […]

Structure or Regression: 4-10-11

Structure or Regression: 4-10-11

By Jill Edelman M.S.W., L.C.S.W . 04/10/2011

A Tenet of Special Needs: Every parent of a special needs child fears “lack of structure”. You begin to hear that term as soon as your child is identified. I assume you work at it for the rest of your functioning parental life. Because, the warning goes, if your child does not have “structure”, they […]

Looks Like She Is Ready: 4-9-11

Looks Like She Is Ready: 4-9-11

By Jill Edelman M.S.W., L.C.S.W . 04/09/2011

Saturday 11:30 a.m. ” I want to do Angelfish with Cindy this summer”. Our daughter appears to be ready to leave her school for good! Wow. She proudly announce this decision before noon today via cell phone.  “I need to work this summer!” Tempted But Controlled: I was briefly tempted to review that both Angelfish […]

Confusion Looms: 4-8-11

Confusion Looms: 4-8-11

By Jill Edelman M.S.W., L.C.S.W . 04/08/2011

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 […]

Are We There Yet? 4-6-11

Are We There Yet? 4-6-11

By Jill Edelman M.S.W., L.C.S.W . 04/06/2011

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 […]

Apartment Hunting and Oprah: 4-5-11

Apartment Hunting and Oprah: 4-5-11

By Jill Edelman M.S.W., L.C.S.W . 04/05/2011

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 […]

Funding: A Cautionary Tale, 4-4-11

Funding: A Cautionary Tale, 4-4-11

By Jill Edelman M.S.W., L.C.S.W . 04/04/2011

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 […]

Having A Comrade Helps: 4-3-11

Having A Comrade Helps: 4-3-11

By Jill Edelman M.S.W., L.C.S.W . 04/03/2011

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. […]

Crazy Quilt, 4-2-11

Crazy Quilt, 4-2-11

By Jill Edelman M.S.W., L.C.S.W . 04/02/2011

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 […]

Parenting Adult Special Needs: One Day At A Time

Parenting Adult Special Needs: One Day At A Time

By Jill Edelman M.S.W., L.C.S.W . 03/30/2011

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. […]

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