The prospect of adulthood is particularly complex for individuals affected by developmental disability, their families, and the people who care about them. Like their peers, they have accumulated two decades’ worth of experiences, their bodies have matured; and they are considered to be autonomous citizens with rights and responsibilities governed by the law of the land. Unlike their peers, they have not outgrown significant reliance on others to navigate the demands of adult independence – accessing health care, productive engagement and gainful employment, money management, self-direction – due to a host of limitations that impact the ability to take care of oneself.

Today’s adult service delivery system for people with developmental disabilities strives to honor their status as full-fledged citizens who have reached the age of majority. They are “grown-ups” who want to make lifestyle choices in keeping with their individual preferences and desire for independence. To this author’s mind, there is no more noble task than supporting this basic desire. Associated challenges are numerous and wide-ranging—making for an extraordinarily stimulating mission. Professionals and parents, sometimes of the same mind, sometimes with opposing views, are presented with ongoing issues requiring a delicate weighing of protective oversight vs. dignity of risk in the essential effort to assist an especially vulnerable human being in living a rich and self-actualized life.

Family members are particularly challenged to make identity adjustments, both in terms of their grown child and their own role in their grown child’s life. It is sufficiently daunting to grant autonomy to any human being who you have fed, clothed, consoled, counseled, cajoled, disciplined, cheered, and housed for twenty years. How do you “let go” when that person is someone who rarely makes eye contact, makes loud, odd vocalizations and flaps their hands every time they change location, and if left to their own devices would eat only pizza, water crackers and grape jelly? How do you switch gears from being that child’s caregiver and protector to that adult’s supporter and advocate?

Professionals, too, are confronted with seemingly dichotomous responsibilities. On one hand, they are charged with insuring the health and safety of every individual for whom they have oversight. This includes folks who want to escape environments that may, for them, be too bright, too noisy, too crowded, or too unfamiliar; who may provoke aggression in others due to a compulsion to repeat the same word, phrase, or snippet of a commercial again and again and again; who may have no awareness of danger. On the other hand, they are trained to enable and honor choice-making; respect preferences; and encourage and promote independence.

I assert a trite but I think true summation: nothing worth doing is ever easy! I am privileged to have come to know many families whose diligent efforts and dedication to bringing their children up to “be all they can be” have resulted in many successes. One young man who comes to mind, who has an intellectual disability in the mild/moderate range and is prone to high anxiety, has successfully learned to use the New York City subway system, is holding 3 part-time jobs, and lives semi-independently in an apartment where he enjoys both privacy and company.

I also have the good fortune of working at an agency with colleagues who thoughtfully toil to do right by the people entrusted to our care, while complying with ever-increasing demands from various authorities for meticulous documentation and budget matters. Individuals who started services with us by attending a school holiday respite program have transitioned to our day habilitation and residential services, followed by service coordinators who strive to insure that outcomes important to the individual are identified, pursued, and achieved. These goals can include being able to hand a cashier the right amount of money to purchase a favorite CD; cooking a favorite meal from their country of origin; or simply selecting and wearing fabrics that maximizes their comfort because they are highly sensitive.

When working with people who have very limited communication skills and do not initiate activities or interactions, staff need to be extremely attentive to body language and facial expressions, and provide a wide variety of activities to discover what interests and pleases the individual.

Access to these services is quite different than accessing education services, which are mandated by law. Services for adults with developmental disabilities are not entitlements. They must be requested and pursued by the individual and their advocates.

Families should not assume that if their child has been in special education they will automatically be determined to be eligible for adult services. There are very specific documentation requirements and enrollment procedures that must be followed to be able to access services funded through the Office for People with Developmental Disabilities, which contracts with New York’s vast network of non-profit providers.

Every county currently has a local branch of OPWDD called a DDSO (Developmental Disabilities Service Office). DDSO’s have lists of agencies that provide services in their county. In New York City Resources for Children with Special Needs is also an excellent place to learn about agencies and services.

The first thing the parent of a student close to graduating needs to do is find an agency that provides Medicaid Service Coordination, and work with that agency to apply for that service. The DDSO or non-profit providers can make referrals to families for obtaining the right type of evaluations needed to apply for eligibility, which often are not available from school.

Using family support services, such as respite, a social skills program, or parent training – from an agency prior to graduation, is an excellent introduction to services in the adult service delivery system while John or Jane is still a minor.

It happens that New York State’s service delivery system is on the cusp of some major changes. The system will, however, continue to be largely funded by Medicaid. Individuals reaching the age of majority will not have their parent’s income counted toward eligibility, and should be enrolled in Medicaid as soon as they turn 18 if they have not been eligible prior due to family resources. Information about system changes, which will come about due to New York’s application to the 1115 Waiver – is available at OPWDD’s website www.opwdd.ny.gov.

Parent-to-Parent of New York State is another organization that can be contacted for assistance with the transition process. It can be overwhelming to navigate the adult service system and decide which agencies to contact, all while adjusting to your child leaving school – and childhood – behind. Information about Parent-to-Parent can be obtained from their web site www.parenttoparentnys.org.

Early adulthood marks a major transition – a significant milestone that underscores the lifelong nature of developmental disability. Differences between affected individuals and non-disabled peers may have become increasingly evident, and some goals may need to be adjusted. Adulthood may also bring unexpected maturity, improvements in adapting to environmental expectations, and most importantly, ongoing skill development. Today’s adult service system is focused on supporting continued personal growth, respecting individual rights and preferences, and the rewards of contributing toward enriching each person’s quality of life.

Laurie is an educational therapist who practices in Midwood, Brooklyn and makes home visits throughout the city. Laurie’s background includes instructional, behavioral, and rapport building strategies with pre-schoolers with autism; children, teens, and adults with intellectual disabilities and/or autism; school-aged children with reading disabilities; and adults dually diagnosed with intellectual disability and behavior disorders. Laurie works to identify the underlying causes of learning difficulties when developing the best intervention plan to set the student up for success. She can be reached at laurie@brooklynletters.com.

“Mommy, the princesses won’t let me play with them.”
I pulled over and got into the back seat of the car with my 4-year old daughter.
“What do you mean?” I desperately asked her, trying to conceal the panic in my voice . . .

She then launched into the details of how, during recess at her preschool, the boys and girls divided into gender-specific groups: “Star Wars” and “Princess.” My poor girl, a fan of the Star Wars films, found herself in the nether-region of such “gender play” and was effectively banished by both Han Solo and Sleeping Beauty.

Over the next few weeks, I was transformed.

The next thing I knew, I–a pacifist and a social worker–was taking names and forming opinions about these 4-year old girls who, much to my chagrin, were on the receiving end of my dirty looks at drop off the next day and the days that followed. My feelings and passive-aggression towards the parents of these “perpetrators” was no less shameful.

I then began down the rabbit hole of self-blame: If only I had scheduled more playdates with girls. If only I wasn’t selfish in wanting to spend time play-dating with my friends, most of whom had boys. If only I hadn’t been a tomboy myself. If only I had somehow been a better parent, this would not be happening. She was an outcast, and it was all my fault.

In the weeks that followed, I withdrew from my regular mommy-friends and sought out play dates with the girls who had “rejected” my child in an effort to prove to them once and for all that my little girl was awesome and worthy of play. These efforts were not only unsuccessful (due primarily to scheduling conflicts), but backfired terribly. The feelings of rejection! The anxiety! The depression! The shame!

The reality was, my daughter hadn’t a clue. It was I who suffered the slings and arrows of this tragedy. She was fine. I was a mess.

After several weeks of this craziness, I took a step back to reflect. The inner chaos I was feeling had several layers. First, the Mamma Bear Instinct: protect my child from hurt at all costs. Ok. I’ll give myself that one. But it was more than that. I was fueled not only by my protective instinct, but by my own history. My own pain. My own experience of being an outcast, feeling banished, not fitting in. My own rejection from the princesses. My own desire to opt for the headstrong Princess Leah over Princess what’s-her-name who always needs to be rescued. Rescued. It wasn’t my daughter who needed rescue from this social calamity. It was me.

I then went back to all I knew about child development, and the fact that children at this age need to have their own social experiences. This is how they develop social skills, conflict resolution and communication skills, and foster self efficacy and self esteem. If I intervene here, she will not learn to fight her own battles and navigate the social matrix that is going to be the rest of her life. She needs to do this herself. My job is to be there to support her, comfort her, encourage her and guide her. Not to manipulate her for my own comfort.

Good lord! I thought the nursing, sleep deprivation and diaper changing of the early years were tough! None of those what-to-expect-when-you’re-expecting books said anything about this one!

Once I came out of my fog and regrouped, I began to share my ever-so-humbling experience, and found that many parents shared similar thoughts and feelings. I also began to formulate a theory based on my experience as both a psychotherapist and a parent. In psychotherapy, “countertransference” refers to the feelings the therapist has in response to (as triggered by) the client. It is the therapist’s responsibility to be aware of these feelings and to be diligent not to react to them, as they typically interfere with effective treatment.

The countertransference of parenting, then, refers to our tendency to react to our children based not only on what we perceive to be in their best interest, but also out of our own needs and past experiences. Mindful Parenting is the process of enhancing our awareness of these issues in an effort to be the best parents we can be. By ‘getting out of our own way’ and relying on our instincts and knowledge, we can foster our children’s independence and growth. Thus, once we are aware of our ‘triggers,’ we can tune in more effectively to our children and utilize our parenting skills more adaptively.

So how is this done? How, in the throes of emotional turmoil do I–as a parent–take the time to reflect, when all I want to do is act on my impulse rescue (or fix or change)?

The answer for today is this: Hindsight is twenty-twenty. Take a minute to reflect on some of the incidences your child has had where you felt driven to intense action (or feeling). What was happening? How did you feel about it? How did you react? Did the event remind you of something you experienced in your own childhood? Think about the situation again from an objective point of view. Would you have behaved (or felt) any differently about the situation if you took yourself (your history) out of the equation?

It is important to note that the initial goal of this process is less about resolving these issues, but more about creating a framework for understanding your own reactions so that you might approach these situations differently the next time. It is also an opportunity to tune into your ‘younger self’ and to recognize when she (or he) is being triggered and might be in need of some additional attention or self care. This might be where therapy comes in, or simply a chat with a supportive partner, relative or friend. At the end of the day, the more supported and nurtured we are, the more loving and mindful parents we can be.

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Fara is a psychotherapist with a private practice in Park Slope where she specializes in working with children, adolescents, parents and families, coping with trauma, addictions, anxiety and depression. Utilizing both traditional psychotherapy and creative arts therapy in her work, she provides individual, couples and family counseling and has developed and implemented psychotherapy, psycho-education and creative arts therapy groups for children, adolescents and adults. She can be reached at: fara@brooklynletters.com or by phone at 917-359-3335.