A Small Adjustment With Big Implications: 8-8-13

Who Will Teach Her Now? In a June 2011 post I wrote of my concern that our daughter, having aged out of her school system at 21 years old, would no longer benefit from an academic setting. The areas of significant challenge, time, money and numbers would languish on the vine, leaving that group of deficits as a major hurdle to more independence.

Two years later I have seen little that relieves this concern in regard to those areas of challenge, though the matter has been raised at semi-annual reviews and computer programs are being put into place. But one obvious resource was not being used: the cell phone. Our daughter is screen skilled, text skilled, telephone skilled. I had requested that she be taught to use her phone for alarms regarding medication times and wake up times yet the phone, as a time and schedule resource, remained dormant.

A Small Adjustment: Schedule content is easy for our daughter. She knows her days and their activities including who is in what group, at what work site, which cat had kittens, and so on, which is saying quite a bit as no two days are a like. But as to hours that these events begin and end, our daughter is lost. Last week, when discussing pick-up for a family weekend, our daughter turned to her staff to provide the time of her return from her volunteer job. That did it for me. The dependent almost pleading look on her face when speaking to her beloved staff member resembled a young child, not a twenty-three-year-old woman. And it troubled me. I wasn’t doing my job to leave her so “young” – was I?

On my drive back home, my mind shifted from guilt and concern to problem solving. Jeez, everyone on the planet, and I mean the planet, having seen Berbers in the Moroccan desert on cell phones, is cell savvy, utilizing that little gem for calendar, time and information. Our daughter knows how to research anything on her cell from “Who is dating Katy Perry now?” to “In which concentration camp did Anne Frank spend her last tragic hours?” She can text, send emails, listen to iTunes and check movies on Fandango. But not knowing when she comes back from her Pegasus volunteer job? This has to be the easiest and most neglected “educational intervention” of all.

The Dangers of Appealing Dependency: Two hours later and the aforementioned staff became cell phone calendar and time savvy along with our daughter as I took them through the set-up steps over my cell phone. Alarms were in place for the twice-a-day Focalin medication. Each day of the week the phone calendar will be filled with the specific times of drop-off, pick-up, all things time related, hopefully with our daughter inputting the information. Why wasn’t this simple peer appropriate, easily accessed format in place two years ago? Answer: other issues were getting attention. But here is the worrisome part. Our daughter is adorable and I know that her “dependency” has an appealing quality to others. “Ah, she needs me and this is an easy need to meet.” As her mother, I have fallen victim to this charm throughout her lifetime; as a professional in the helping field, I am no stranger to the allure of feeling “needed.” Part of the attraction to the helping professions is the joy one receives in helping another. But beware the charms of the needy adult, special or otherwise. We can enable and prolong dependency easily and subconsciously when it is delivered/packaged in cute/precious and affirms us as caring, competent adults.

Concepts of Time: I don’t know if our daughter will develop the more abstract notions of time passage as in, the movie will be over in two hours, the jewelry class is an hour and forty five minutes long and begins at 6:30 or the plane ride to Florida is two and half hours. But continuously reminded that she has the means to answer these questions, our daughter can check her calendar to see that the plane is expected to arrive at Sarasota airport at 3:40 and her phone indicates that it is 2:00. Therefore she can return to reading Soldier Dogs on her mini iPad. And if she needs to check again and again for further updates, or wishes to set an alarm for 3 P.M. though flight attendants are unnervingly adequate human alarm clocks for such updates, she has the independent means to do so.

In Fact, They Are Always Teaching Her Now: In fact, our daughter is learning new skills all the time, through experience and maturing, but mostly through the painstaking work of the Ability Beyond Disability Staff. Special Needs is such a crazy quilt of disabilities and abilities, some seem so basic and mundane yet in fact, they are exceedingly essential. One such skill is blowing one’s nose. Our daughter has been unable to blow her nose with any success throughout her twenty-three years of life. As with most of us, she gets lots of colds and has some allergies as well. Sinus infections have dogged her for two decades with all their requisite discomforts, pressure over and under the eyes, fatigue, rotten moods leading to interpersonal mess-ups and lost days. Just yesterday her staff excitedly informed me that our daughter, after months of training, and in the throes of recovering from the latest round of nasal challenge, has learned to blow her nose. And while visiting an hour later, I was invited to witness this new achievement. Staff to daughter: “Remember do it like you are blowing out candles with your nostril.” Months of training have produced a lifetime of relief. Unbelievable. I could never teach her this skill. All those tissues, all that mucus, all her “mom I can do it” never resulted in success. It can take a village even to blow a nose.

Forever On Guard: While swimming in the Gulf of Mexico with my daughter in early July, in water so shallow that generally it reached only to our waists, a very frightening experience occurred. That particular day the water was deeper for some reason, perhaps related to shifts in the sandy bottom through tides and storms. Accustomed to being able to swim freely, our daughter headed out farther and farther with me trying to keep up. At some point, neither of us was able to stand so I asked our daughter to come in closer to shore. She ignored me. Swimming alongside her, I repeated my request. Then I saw that our daughter had swallowed water and was coughing. This went on for a long time. I knew what could happen. If she continued to be unable to swim because she was struggling and coughing, I would need to do the Red Cross life saving maneuver to bring her safely to shore. Instinctively I felt that our daughter would fight me if I tried. I was quietly pretty terrified and looked around for help. None in sight. We both continued to tread water and eventually her coughing subsided and our daughter regained her ability to swim. At no time did our daughter seemed alarmed and we both “calmly” swam back to shore. But for me, loads of alarm bells went off.

Who Will Teach Her This? Our daughter as a young child learned to swim through individual lessons provided painstakingly over a great deal of time, with humor and skill by a wondrous P.E. teacher from our elementary school. Group lessons wouldn’t work and as we didn’t have a pool, friends offered the use of their pool over several summers. Our daughter learned to swim and proceeded to compete in Special Olympics. Today, she adores swimming; it is her favorite outdoor activity. Yes she can swim, though the utilization of both arms while doing the crawl is, well, missing. But can she also be saved?

After we returned from Florida, I sent out a big fat group email to her staff. Who can help us here? And once again, staff stepped in. They take her swimming often to a local lake and to the Park and Recreation pool, both with lifeguard coverage. Yet, the message was clear. More safety precautions are needed. The staff responded immediately to my request for some type of training and have set up a class for our daughter and her apartment mate to be acquire ability to respond appropriately if aquatic life saving techniques were needed. I will let you know how all that goes.

A wake up call indeed: I was very clear that if our daughter needed saving by me in the Gulf the last day of our Florida family vacation, we both would have drowned. I need the training too.

Never Stop: Parents can never stop being vigilant about the health and happiness of our children, so long as we are functional adults. With a special needs adult child, this usually means a great deal more concrete intervention than would need to be employed for a more independent adult child, even with the incredible dedication of a team as caring and skilled as the Ability team. More eyes, more ears, more ways to make sure that our daughter will be safe and fulfilled. And when I am no longer that functional adult, I will pass the torch on to others, our son and our family. I am as vigilant with our son, though far less is concretely required; he is self-sufficient in every area. Yet he and I both know that I am watching with the same vigilance and passion that his sister receives from me. Still, the difference is enormous.

The Good News: Yes, the good news here is that many are teaching her now. And she is still learning, a reminder that Special Needs adults need never stop learning and maturing.

Jill Edelman, M.S.W., L.C.S.W. 2013

7 Responses to “A Small Adjustment With Big Implications: 8-8-13”

  1. Ginny Walzer

    I always enjoy your work. You are such a devoted parent. An inspiration.

  2. Linda Francese

    Dear Jill,
    And I do mean “dear” Jill! You are such an amazing person and inspiration to me. As you know, my own son has special needs and having just turned 20 in June, I have begun to put my worry meter into hyperdrive.

    I smiled as I read the part “our daughter is adorable” and you’re right! How many times have I said just that to you? She is adorable! I never realized how this could hinder a person with special needs.

    Thank you for this wonderful article. I hope you realize what your honesty and your insight do. I remember my mother asking me once if it was “ok” for her to tell a dear cousin that my son had autism, as if it were some sort of taboo. I have never “covered up” his disability, not even to him. Your words help me, they help him and most importantly, they help me help him!

    Thank you, my wonderful friend! I am so glad that God put you in my life!

    • Jill Edelman M.S.W., L.C.S.W

      Linda, you wild and wonderful tiger mom, cat passionate D.J.personage, what a powerful wonderful concoction of a human thou art. Thank you for those affirming words.I am heartened every time I hear that these posts serve a meaningful purpose for someone(s). Grateful to you always, whether for cat care or eye care or most of all, person care.

  3. Marie-Eve Berty

    Learning all our lives is vital. Using the new tools our civilization provides to help our disabled children is great. As always your thoughtful thinking to help Juliette is worthwhile considering for others. Keep on inspiring us.

  4. Ariana

    Having just recently reunited with my older sister, now 52, and living in a nursing home, I wanted to learn more about parents of adult special needs children. What a great place your daughter is in. If one were available when my sister was 21, I know my mother would have pursued it, or at least tried. Now after so many years, I hope that I can bring a little extra to her days, and maybe a little joy.

  5. Mrs J

    I have recently discovered your blog and am enjoying your posts. Our son has aged out of traditional special education in the public school system and we are finding activities and services sorely lacking. It’s as if people with disabilities become invisible after age 21. I love your passion. Keep sharing!


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