July 4th weekend I took myself to see Pixar’s Inside Out, the animated film about, of all things, how feelings work. (For a non-special needs oriented take on this subject, see my post on The Couples ToolKit.) The main characters are Joy, Sadness, Anger, Disgust and Fear. Joy is Amy Poehler – funny fun and […]
Developmental Disorders
Shining Boots, Shifting Staff and Book Clubs: 9-25-12
Thirteen Months and Twenty-Four Days: That is how long our daughter has lived in her new home. And today the Ability Beyond Disability team, along with the Connecticut Department of Developmental Services case manager, met with our daughter and her parents for her DDS annual review. The residential coordinator opened up the ceremonies by saying […]
Two Ladies About Town: 2-20-12
A Pekingese Named Malachy: Our daughter and I had a grand time in New York City last Monday and Tuesday. The Westminster Dog Show was a “hoot” including the “best in show” Pekingese” Malachy, who we were lucky to view in the toy group Monday evening. Our daughter compared him to a “walking mop” and […]
Heading To The Dog Show: 2-13-12
Westminster Here We Come, Woof Woof: Today our daughter and I head to Madison Square Garden in New York City to see the 136th annual Westminster Kennel Club Dog Show, a long awaited second visit to this country’s pre-eminent canine competition. And we are psyched. Our daughter has already previewed the Monday night line up […]
Who Defines Disability? The DSM V and Autism: 1-23-12
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 […]
Texting While Sleeping: 1-15-12
Small Offshore Coastal Occurrence: This was one of those weeks where fatigue created a small offshore storm in our daughter’s special needs life involving a missing DVD and a whole lot of texting. Our daughter had requested that we purchase the DVD for the movie Dolphin Tale as her final, and I mean final, gift of […]
Uneven Terrain: 12-19-11
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 […]
Phase ll Of Parenting Adult Special Needs: One Week At A Time
Back To Business: A full week away from writing my blog has been strange indeed. Though the time was bathed in the joys of turkey grease, sweet potato skins, family fun and amazing Fall weather, I do enjoy being back at the keyboard. A daily ritual was absent and no surprise that the experience was […]
A Hairbrush, Forgiveness and Natalie Wood: 11-19-11
Happy Birthday To Grandpa: If our daughter’s maternal grandfather were alive today, he would be 101 years old. Wow. Our children never met either of my parents but their presence is felt by my children in my presence as their parent. Happy Birthday to you Dad. A Wake Up Call With Horses: My iPhone showed […]
Not Checking In: 11-15-11
My Plans: It is 10:30 a.m. and our daughter is at day two of DSO. Last word from her came yesterday afternoon when a 3:24 P.M. text buzzed my way. “My day went well,” followed by a phone chat informing me that she is missing her watch and one doggy patterned sock. Please deliver. So […]
Shaking Things Up: 11-12-11
Friday’s Visit: Yesterday afternoon I stopped by to drop off a check for our daughter’s November recreational costs. Though entitlements fund rent and staffing, food, household goods and Medicaid, (if they finally reinstate her) nothing is left over for costs such as clothes, furnishings, and outings of any kind including movies, the recreation center, Sphere and Pegasus. […]
The Senior, The Cat and The Daughter: 11-10-11
Ridgefield Crossings: It is a beautiful day in the neighborhood, burnt orange leaves glisten with gemstone rain drops outside my office window, framed by streaks of blue, grey and white sky and our daughter is off to her new volunteer job. Hurrah. Fingers crossed, the senior, the cat and the daughter get along. Is the […]
An Off Day: 11-09-11
A Full Moon? Was it the full moon last night? Sure looked and felt that way to me. While on route to my oil change our daughter text me “I’m having an off day.” When I called she greeted me sobbing hysterically. I could barely make out what she was saying but recognized enough words to determine […]
Oil Change: 11-08-11
Coming Attractions: Today I am off to get an oil change, 20,000 miles plus on my new Toyota Venza, purchased a year ago on our daughter’s 21 birthday, November 4, and it seems appropriate to my state of mind. I am a bit burned out by birthday celebrations, storms and sickness and look forward to a […]
Humor, The Antidote: 11-07-11
The Two O’clock Hour: Our daughter went to sleep at two in the morning after Friday night’s birthday. Though evening staff has a role to ensure that the girls shut off cell phones and laptops by 10 P.M. to enable them to wind down for a decent night’s sleep, somehow our daughter managed to keep […]
The Delights of Difference: 11-06-11
Pride To The Sky: Yesterday our son and his boyfriend joined day two of our daughter’s birthday celebration. The young men took the train from the city and we all drove to the Palace Theater in Waterbury, Connecticut to see In The Heights and catch up with their high school buddy who is in the […]
We Are So “P” of You: 11-5-11
A Run Down On The Cats: During our ride back from the birthday dinner/shopping celebration last evening, our daughter described her work at The Complete Cat Clinic earlier that day. She spoke of Elwin Nelson, Mocha and Coco. Elwin Nelson is white with brown patches, a male and “adorable.” Coco is a cat whom our daughter […]
Two Lady Grumps With A Lot To Share: 11-3-11
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 […]
Coming Up On 22: 11-2-11
Birthday Girl: Two days from today our daughter celebrates her twenty-second birthday, which will be marked by a variety of events including attending theater in Waterbury, Connecticut to see “In The Heights” and a trip to the Vera Bradley store at the Westfarms Mall. Bass Player Pal: Her brother and his boyfriend are coming up […]
Medicaid Mix-Up But Power! 11-01-11
Waiver Whatever: I took our daughter to her doctor and ran into a bunch of bureaucratic glitches that broke my spirit for the moment. Unfortunately my condition was frightfully contagious and my poor daughter caught it. Bored Yet? Not to belabor the boring, of which I am often guilty, the Doc’s prescription for an antibiotic […]
Pulling Back? 10-27-11
I Wonder: Is the new season of Special Needs Adult Living upon us? Is it time for me to pull back a bit? I would like to think so. The vigilance of the last almost three months since the ladies moved into their apartment (August 1) is time-consuming and my extensive email correspondence with the […]
Spirals Of Anxiety: 10-21-11
Halloween’s Haunt: Every year as the leaves drop and front lawns are bedecked with spider webs, dangling sheeted ghostly figures, and wondrous ghastly creatures, our daughter gets sick. By Halloween night or a few days later on her birthday, she is either on Zithromax (yes we have tried the naturopathic route) or at least Mucinex […]
A Magical Combination & A Swimming Buddy: 10-19-11
Angelfish Rocks: Our daughter apparently had a mighty fine time at her first full-fledged Angelfish swim lesson last evening. Her ABD staff told me she worked well with her new swim buddy, a young gentleman of similar age who welcomed companionship in the pool. I am thrilled. They did laps and jumping jacks and whatever […]
Love Her For Who She Is: 10-17-11
Ronan: I had an idea for today’s post but dropped it this morning when I read Emily Rapp’s piece in Sunday’s New York Times, Notes From A Dragon Mom, about her son Ronan, eighteen months old, who has Tay-Sachs Disease. The article is painful, so I am not suggesting it to readers without a useful motive. […]
More Than One Mother: 10-15-11
Cozy Comfort: Last evening I dropped by our daughter’s apartment to deliver her dog magazine and a Pegasus announcement of a pumpkin-carving party next weekend, and while there, was able to take the pulse on her mood after her “misunderstanding” with a staff member. She looked great, was having popcorn and watching a movie with […]
Trouble In Paradise: 10-14-11
Oh Dear: Our daughter called at 9:03 a.m. today. And then again at 9:06. I was working but when I picked up the message at 10:15, it was something like this: “I am having a water problem.” Well, it has been raining fairly steadily for 24 hours so I assume there is a leak in […]
Join Their World: 10/10/11
100 Years Of Peter Pan: Today’s New York Times Op Ed section had a piece written by Maria Tatar, chairman of Harvard’s folklore and mythology program who reminded us all that this week Wendy and Peter are one hundred years of age. In my opinion, one hundred wonderful years for those of us who fell in […]
Sequined Skirt and Silver Shimmer Shirt: 10-08-11
Bundled Day: Today we are bundling Pegasus with mall shopping and Yom Kippur break-fast in NYC. So far, so good. After meeting at riding, my daughter and I went on a mission to purchase party shoes (no small challenge as she needs flats with straps), jeans and cords (equally challenging as she wears petites which […]
Entitlements? Well Maybe Not For Long: 10-04-11
Our Children’s Future: This YouTube video link was sent to me by a dear friend. She posted it on her Facebook page. I did the same. The young lady featured in the video, Kira Fisher, speaks eloquently about her future concerns regarding her struggles with government funding and maintaining a life of self-respect and productivity. […]
Oldies but Goodies: Parenting Adult Special Needs: One Day At A Time
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 […]
Happy New Year: 9-29-11
Candy Apples, Challah Dipped In Honey: Today’s post is not about our daughter, but about that half of her heritage for whom today is one of the holiest days of the year, Rosh Hashanah. The Jewish New Year. Shana Tova. Sweetness in the New Year. ©Jill Edelman, M.S.W.,L.C.S.W. 2011
Purposeful Blogging, Pass It Along: 9-15-11
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 […]
How Smart Is Humor: 9-10-11
A Necessary Balance: I had to cancel our UGGS (boots) shopping yesterday. Rescheduled for next Saturday due to a previous commitment to my husband to head down to Cape May Point, New Jersey if the weather were good. And so it was. Our daughter handled the delay well but I didn’t. I felt that I […]
A Celebration For The Artists: 9-9-11
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 […]
Uggs, No Hugs: 9-8-11
30-Day Review: The meeting yesterday reviewing the first thirty days of adult independent living was a kind of love fest. The conference at Ability Beyond Disability had nine staff members, our daughter and myself. When I walked in at 12:30 our daughter was seated at the table nibbling on a bag of cheese crackers and drinking […]
The Thirty Day Meeting and Temporal Awareness: 9-7-11
Pending Good News: I received a voice mail from the Pegasus people to say that our daughter has a 95% chance of being in the Fall riding program. We will find out Thursday. At 12:30 today the Ability Beyond Disability staff and our DDS case manager meet at an ABD office to discuss the last […]
No Dad’s Paintings Please: 9-6-11
Love Her Spunk: The Ridgefield CRS apartment is a pretty stylish place these days. The residential coordinator picked out an area rug for the living room, a runner for the hall and hung some curtains to soften the noises being emitted from the red couch. Both the coordinator and the other mother, having seen her […]
One Mother Wanted To Schmooze: 9-2-11
The Check In: Thirty minutes after I published yesterday’s post, our daughter called; “Hi.” “Hi Sweetie, how are you?” “Good.” “How was your day?” “Good.” “What did you do?” “Well…” And she went on to describe a trip to the recreation center, time on the treadmill, a visit to Puppy Love, a local pet store, […]
No Power, No Water, No Daughter: 9-1-11
September Morn: New England loves September. It is our return to clarity of mornings, yellow buses huffing and puffing fumes up steep hills (delayed by Irene’s iron club) the Mark Twain Library Book Fair (Twain lived and died in our Redding woods, founding his eponymous library during his two year stay). It is all a […]
Skunked And Bumped: 8-31-11
Home At Last: At 3 P.M. yesterday our daughter called, joyful the power was on in her Ridgefield apartment so the gal was going home. Whew! Now that was timely, as our son had reached me moments earlier from our house to say our generator was “fried.” Darn, the guys were right, keeping it on […]
Yearning For Return: 8-30-11
Disruptive Despite The Fun: These are hairy times in so much of our area. Though I find consolation in the continuous party atmosphere, reassuring myself that though our daughter’s been dislocated from her new home, she is enjoying the adventure, in fact she is yearning to return to “my cozy little apartment and my apartment-mate.” […]
She’s Back: 8-29-11
The Empty Red Couch: Irene brought our daughter home. Irene, the hurricane of 2011 who will go down in East Coast history as a late summer mini-series of dramatic proportions, exerted her force on many a family unit. In our case, she imposed significant bonding momentum in our circle of immediate family and neighborhood friends. […]
A Very Social Storm: 8-28-11
We Bailed: The vote was unanimous, five in favor of boarding the 1:30 ferry yesterday bound for Bridgeport, Connecticut, a smooth crossing indeed. After stops for food, including a local farm replete in pigs, blueberries and an amazing flax seed bread, we reached home. Our son made his original wheat berry beef stew, inviting his […]
A Sticky Visit and To Cry Or Not To Cry: 8-26-11
A Slight Melt: What was to be a quick visit to our daughter’s apartment yesterday evolved into a longer familiar episode in which an array of discomforts and stresses was expressed. The technical aspect of the Facebook issue was resolved prior to my arrival with a defriending. But the emotional aftermath with some spill over […]
Oh No, Hurricane Irene, Disappointment Brewing? 8-24-11
Disappointment History: For several months our daughter has eagerly awaited two terrific events, attending Long Island’s Hampton Classic Horse Show with her cousins this Sunday and the ASPCA Adoption Day also at the show starting Monday at the invitation of the Senior Director of Special Giving at the ASPCA, a super lady who was gifting our […]
Did You Miss Me? 8-23-11
The Chocolate Lab Comes Home: Last evening my husband and I visited our daughter at her apartment, bringing both the stuffed dog and her real dog, Ms. Wags, aka Waggy, whom she hadn’t seen since August 1. I had the feeling that our daughter really missed us this past weekend. She called many times while […]
Closing In On Fall: 8-22-11
September Schedule: When your children are no longer following a school semester schedule (first time in 21 years for us) and you happen into a Staples or even CVS, busting at the seams with frantic moms and distracted kids racing around with baskets full of notebooks and binders, it comes as a shock. Oh no, […]
Our First Separation: 8-20-11
A Weekend Away: We left the area for the first time since our daughter took residence in her adult independent living abode. Yesterday afternoon my husband and I headed for his home state of Maine. Our daughter had virtually no reaction, certainly no concern. Her only request was that we purchase a stuffed chocolate lab […]
The Elusive Job Piece: 8-19-11
A Door Closes: The latest news on the volunteer job front is a bit unsettling. The Complete Cat Clinic, a veterinary practice which specializes in the care and breeding of our feline friends, is a small and cozy operation. Dr. Sharon Eisen, the owner and friend, welcomed our daughter’s services over the last few years […]
Expressing Sympathy And A Special Needs Match: 8-18-11
I Am Sorry For Your Loss: Those are the words our daughter wrote, unprompted, on the sympathy card she sent yesterday to her friend’s parents. I was so touched. She added one more sentence, “I miss…” and signed her name. Who taught her those words? I did, the culture did. She absorbs it all, seamlessly, […]
The Night Shift and Supplemental Needs Trusts: 8-17-11
Unrealized Fears: The other mother and I had worries about the nighttime staff. The two women had appeared sleepy and detached at the all-staff introduction only a few short days before the girls moved to their new apartment and alarm bells related to nighttime, new home and strangers in charge rang loud in our maternal […]
A Condolence And Busy Being Neighbors: 8-16-11
Neighbors: This is a unique chapter indeed. Prior to boarding school, which began when our daughter was sixteen, she spent most of her time out of school with her parents. In the last five years, ten months of the school year and five weeks in the summer our daughter lived four hours away, eight total round […]
Losing A Friend: 8-15-11
What Do You Say? Our daughter lost a school friend yesterday. I received an email while we were lunching with her cousins that one of her classmates died suddenly, unexpectedly. They had shared a graduation two months earlier. I didn’t tell her at first but waited until we were back in her apartment and her […]
A Trot And A Halt: 8-13-11
Pegasus Summer: Sadly, our daughter’s summer riding program ended this morning. She trotted, halted and went on a trail ride displaying balance, focus and progress beyond my expectations. Much is due to her awesome instructor, Liz Fortis. Though on the waiting list for Pegasus’ Fall program, our daughter will definitely attend the winter “unmounted” program […]
Pregnant, Tired Or Fired? Nope Just Gone: 8-12-11
Irony, Life’s Theme Song: I just reread the last paragraph in my 8-8-11 post. The paragraph started with the topic: “I Love This Coach” and ended with a silent prayer. I think you get my drift already. Yes, the coach is gone, poof, as of yesterday. No kidding. Neither pregnant, tired nor fired, she just left. […]
A Date And A Cake: 8-11-11
Celebrating Again: A dear friend and colleague who lives three doors down from our daughter’s apartment visited last evening with her daughter, a cake and a splendid bouquet of yellow flowers. My husband and I escorted the ladies out to a local restaurant where our daughter regaled them with her take on Planet of Apes, […]
A Visit From DDS: 8-10-11
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. […]
“Buck” Brings A Tear: 8-9-11
Tough Stuff: My girlfriend and I had a long awaited evening out last night. We went to see the movie “Buck,” a documentary produced and directed by Cindy Meehl, which captures the pain and beauty of the man who inspired the book and film, “The Horse Whisperer.” As Ms. Meehl lives in our town and […]
A Thumbs Up On Planet of The Apes: 8-8-11
Afternoon Review: As soon as I finished my post yesterday, with the assumption that our daughter was done with me for the day, she called. Back from her movie, and eager to share her impressions, we talked for about forty-five minutes. James Franco rocked, and the ape movie received a thumbs up from someone whose […]
Funding A Life and Some Polo Play: 8-7-11
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 […]
Full Mailbox: 8-5-11
Mom’s Day Out: Mom’s Day Out hit all the right notes. The Frick Collection has many of the great masterpieces I studied on slides decades ago in college. Walking through its majestic rooms with Bellini’s St. Jerome, the Van Dykes, El Grecos and Turners, presumptuous as it sounds, felt like greeting old friends. “Oh there […]
Off To The City, Feeling A Little Giddy: 8-4-11
Facebook Cheering Squad: Before I head off to NYC, I must report that viewing my Facebook page and seeing the comments folks send to my daughter, comments from family, her friends, my friends and her brother’s friends, touches me deeply. I posted photos of the girls’ “installation” into their new abode and the feedback, “love […]
I Like This New Phase: 8-3-11
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
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
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 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
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
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
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 […]
Count Down: 7-26-11
Ready Or Not: I think I am ready for the hand-off. More importantly is our daughter? I think so. I’m beat. But this is not about Mom. This is about our daughter and I think she is ready too. Home is good but it includes a “nagging mom” and nagging moms, at some point, are […]
How Do You Teach Gratitude And Hurrah For The Other Mother: 7-25-11
The Dining Table Deal: While we were blissfully removed from the angst of Wi-Fi and cable installation (not happening) enjoying a weekend by the sea, the other mother was nailing down the rest of the kitchen list and buying the living room television. Brava, Other Mother! And even better, she saw the dining table I […]
Back To Reality And A Star Magnet: 7-24-11
Sunday’s Farewell: The weekend family frolic is ending and we will soon board the ferry back to reality. I don’t know if the other mother picked up the list of household/ kitchen items and went off to shop. Or if measurements were taken with the intention to purchase the flat screen television for the living […]
Ambiguity Doesn’t Work For Special Needs: 7-17-11
Sleep Overs: While observing our daughter frolicking with family friends, her brother and one of his pals last evening, I began to wonder, when she moves in to her apartment, will we have sleepovers? How does that work? If home is there and home is still kind of here, can she just call and say, “Can […]
Staff With Bounce And Mom Bumps: 7-15-11
Playing Catch Up: Wednesday was “Individualized Home Support” day. Since the ladies have not as yet moved into their apartment, the home support consisted of a residential staff person, Melissa, arriving to pick up our daughter so they could spend time getting to know each other. The plan was to take her to the new […]
Madam Librarian And A Home In Two Towns: 7-13-11
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. […]
The Pop-In, A Flat Tire But A Decent Day: 7-12-11
The Pop-In: I did do the pop-in at noontime. The little bus was late but off our daughter went to her first day of two-per-week attending a group program at ABD’s Leir Pavillon. Just twenty minutes from our home, I was able to dash over between sessions to observe the Day Support Options, a fairly ambiguous […]
When Something New Is Ventured And A Horse Named Milos: 7-10-11
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 […]
Vacationing With Special Needs: 7-9-11
The Agony and The Ecstasy: We are back. A week spent in Florida with our daughter and our niece whacked me with the good and the not so good of special needs vacationing. I am always reluctant to describe our daughter’s “mishaps” or “screw ups” to illustrate why she is “special” but in the service […]
Make It Even: 7-1-11
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
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
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
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 […]
Special Needs Sense of Humor, Without Judgement: 6-27-11
What Do “La Cage Aux Folles,” “Priscilla, Queen of The Desert,” “Hair” and “Monty Python” All Have In Common? On the first Monday after New York State legalized same-sex marriage, indeed a time to celebrate difference, it occurred to me that our daughter and many of her special needs friends have the ability to laugh […]
A Flip of a Coin and The Illusion of Permanence: 6-26-11
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
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
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
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
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
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 […]
Sounds Similar, But Don’t Be Fooled: 6-20-11
The Glories of Home: In the last week, since our daughter arrived home, the laundry load has tripled, as she believes that once worn, wash needed. By the way, she can do her own laundry but who has time to stand by her at the washer and dryer when we are running helter-skelter setting up […]
She Rocked The House and Stole The Show: 6-19-11
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 […]
Charles Dickens Pays A Call: 6-18-11
A Rich Disparity: Special Needs people are not of one ilk, as those who move in that world know. There is a wide-ranging diversity. Yesterday, driving our daughter for a follow up doctor’s visit for a quick check of TB shot spot (required by the service agency), I put on the 3rd CD from Charles […]
Giving Away The Bride: 6-17-11
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 […]
The Little Cottage: 6-15-11
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
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
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 […]
The Apartment Challenge Continues: 6-9-11
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
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
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
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
“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
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 […]
A Five Year Ritual Ends: 5-31-11
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
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
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
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
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
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
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 […]
Exited: 5-23-11
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 […]
SPHERE, Special People Indeed: 5-22-11
An Acronym That Works: SPHERE , founded in 1987 by a group of parents in the town of Ridgefield, Connecticut, stands for: Special People Housing Education Recreation Employment. And Wow, they are special! Last night I attended the yearly performance of SPHERE’s theater group. This year, for the first time, the group made a movie, an […]
Closing In On Aging Out: 5-21-11
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 […]
Special Needs and The White House: 5-20-11
David and Susan Axelrod: Even the White House knows special needs. While away for six days with my husband, I watched Piers Morgan on CNN interview David Axelrod, President Obama’s former senior advisor and primary campaign strategist. David and his wife Susan Landau are parents of a “special needs” daughter, now in her late twenties, […]
Sex Education and Special Needs: 5-10-11
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 […]
Cousins Fill The Friendship Gap: 5-9-11
Dedicated To Rosa: Yesterday was Mother’s Day and on Facebook our niece posted a Happy Mother’s Day to me. On the heels of yesterday’s piece regarding the absence of real friends for many special needs children, I remembered with gratitude how much our daughter’s cousin filled in the gaps for many years. Cousins Rock: When […]
Dating? 5-7-11
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
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 […]
Do You Have To Be Educated To Raise A Special Needs Child? 5-2-11
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 […]
Clarification: No Magic Wand Here: 4-29-11
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 […]
Discomfort Zone: 4-27-11
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
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 […]
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. […]