April 2020

By Debbie Kaflowitz

Mother of Rachael (06/21/1985 – 10/25/2018) NPC

Hi Everyone,

I’m sorry you haven’t heard from me in a while. I try to stay positive in my articles, but sometimes there is just too much reality going on. This past fall was a series of triggers of grief over Rachael’s passing. Sept 8th was the one-year anniversary from Rachael entering the hospital. Shortly afterwards, was our first Rosh Hashanah and Yom Kippur without her. October 25th marked the first anniversary of her death and on November 4th we had the unveiling of her headstone. I thought I had my act together when Thanksgiving snuck up on me, which had always been Rachael’s favorite holiday. However, throughout this time, whenever I posted something on Facebook, my NPC family always came through with posts of love and support. Thank you. And now we have Covid-19, so stay safe and healthy.

It has been said that happiness comes from feelings of belonging and success. Many adult onset children are lucky to have experienced both. However, as our adult children begin to decline, these opportunities become fewer and fewer. Peers move into the adult world with college, jobs, marriages, and children. Our children move backwards, and the worst part is, at least for a while, they are quite aware of what is happening. Feelings of loneliness and uselessness set in. 

How do we fill their days with activities that make them feel successful and provide social opportunities? They want peers, not parents. As we, the parents get older, it becomes more difficult both physically and emotionally to fulfill our child’s needs.

The two biggest challenges are that programs and procedures vary from state to state, so there aren’t a series of steps I can give everyone to follow. Secondly, our children’s needs change as they decline, so a program that is a good match at age 20, might not be a good match at 22. On my Facebook page, “Aging with NPC,” I asked families of adult onset children what their child did during the day. The answers ranged from children sitting at home watching television, playing video games and just hanging out with children who were active with part-time jobs, a variety of therapies, and day programs.

What can you do to find the best daytime activities that meet the needs of your child and your family? There is no easy answer. I once saw a Facebook post that said something like “The parent of a child with a rare disease can dig up more information than the FBI.” That is so true. You’ve already become mother/father, caregiver, advocate, doctor, nurse, and specialist. It’s now time to put on a new hat, detective.  

The first step is to look into state agencies. You can find these on the Internet under your state government. In New Jersey, we have DVR (Division of Vocational Rehabilitation) and DDD (Division of Developmental Disabilities). Rachael started with DVR when she graduated from her age-out program. DVR’s goal was to find employment for her with possible job coaching. Rachael’s support coordinators didn’t understand her. At this point, Rachael looked absolutely fine on the outside. However, her cognitive ability, especially following directions, and the ability to read social situations had declined. It soon became clear that she wasn’t functioning high enough to hold a job.

Rachael was then passed to DDD. Their job was to support day programs or other activities for Rachael. We received a case manager and a budget based on an evaluation. Rachael could use that money the way she wanted, as long as it was something on the approved DDD list. These case managers were not well versed in programs, so I wore my detective hat every minute I wasn’t teaching or sleeping. What a challenge! Rachael was high functioning in many ways. She loved arts and crafts, singing, and dancing. She had a wonderful way with young children. She still saw herself as a functioning adult. She didn’t want to be with “disabled” people because, according to her, she wasn’t one of them. We saw programs where people sat, doing one task all day long with some television breaks and places where there was little to no interaction among the clients. These were way too low functioning for Rachael.

Then there were programs mostly for drug and alcohol recovery or for people who had just taken wrong turns in their lives. These programs used discussion groups as their main focus, and with Rachael’s cognitive decline, discussion groups didn’t work. They also had minimal supervision because they were trying to get people back on their feet to operate in the real, adult world.

Rachael spent a lot of time at home, which were difficult years. Luckily, for the last 5 years of Rachael’s life, we were able to piece together the best programs and extra support possible for Rachael. We found two programs on the DDD list that worked. Two days a week, Rachael went to the WAE Center, (Wellness, Arts, and Enrichment) which was run by the Jewish Division of Developmental Disabilities. You didn’t have to be Jewish to attend. They served a variety of disabilities, such as blind, deaf, Asperger’s, developmentally challenged, etc. The staff members were wonderful, professional, caring people. They sang, cooked and provide exceptional art activities. Rachael didn’t make any friends to socialize with outside the center, but during the day, the staff had a talent for promoting interaction among the clients. Rachael and the staff members bonded, since she was higher functioning than many of the clients.

Rachael also spent 2 days a week at a rehab center called Universal Institute. It is actually for traumatic brain injuries, but they accepted Rachael. They too had a variety of classes that kept Rachael occupied and happy. There are several of those around the country, so you can check the Internet.  

Lastly, we used care.com to find two women around Rachael’s age, one for a few hours on Monday and one for a few hours on Sunday. At first, they would go out to lunch, run some errands in town and spend time at the library. When Rachael’s decline made running errands too difficult, they would do art projects at home or watch a movie together. Care.com is nationwide. You do need to interview and check references for anyone you hire because care.com doesn’t do a thorough job. We paid them ourselves. I did need to try a variety of people before I found exactly the right match. One key for care.com is writing a good description of the kind of person you need. I would be happy to help you write the description, just email me at [email protected]. 

A NJ state financial-help program called The Preferred Preference Program was started about 2 years before Rachael passed. The goal of the program was to help people hire their own help, which included friends and family members. We could make Steve the employer and me the employee. After an evaluation, we received a specific number of weekly hours at a set rate. Each month, after I filled out and sent in a time sheet, we would receive a check that we used to defray other medical, program, transportation, and aide expenses we had for Rachael. You could use this money to pay anyone, such as a friend, an adult around you child’s age, a college student, anyone.

Many other adult onset families face the same challenges we did. Below are some activities that have worked for them.

Several people found one-to-one trainers at a gym who work with their children 1-3 times a week. You do need to find someone who understands the special needs of your child. For most of these places you need to pay yourself. 

Don’t discount day programs that are more for the elderly population. Rachael always bonded more with the staff than the clients, anyway. The elderly also enjoy someone younger, so other bonds can occur.

Look for an art or music therapist. Rachael’s budget paid for an art therapist once a week through a program called Arts Unbound. Unfortunately, they closed down due to lack of funding.

See if there are any water therapy times at your nearest Y. 

In Minnesota, a program called CDCS sounds very much like New Jersey’s Preferred Preference Program. Havi Martinez has more specific information. She can be reached at [email protected].

Havi also knows about a program called HopeKids, which is available in Minnesota, Arizona, Colorado, Middle Tennessee, North Texas, and Kansas City. According to Havi, it’s designed for children with life limiting illnesses, but if your child has aged-out of everything else, they sometimes continue helping people.

If you are tired of being a detective and would like me to look at your state website to find some leads, I will be happy to do so. Just email me at [email protected].