The following except is from a page I authored in the Annual Report to the President of the United States in 2011, as part of the President’s Committee for People with Intellectual Disabilities (PCPID):
“When my twins were 8 years old, the stress of raising two children who had constant meltdowns, bit and scratched everyone around them, and were not toilet trained, had reached the boiling point. My wife and I fought daily and our oldest daughter was witnessing the loss of her family and childhood.
As my twins continued to sit for years on waiting lists for community-based Medicaid waiver services, and no other options at hand, I contacted a local advocacy group in search of a place who could take our twins. As we clearly were in crisis mode, we qualified for state funds available though our school system to provide respite support. We were approved for that support and our first attendant joined us three weeks later. When she arrived, the stress on my family was reduced in an unimaginable way and our children were able to continue being raised by those who love them most.”
American society has evolved over time, from an era when members of extended families lived close by and helped each other raise their children, to today when parents and adult siblings may live thousands of miles apart. Combined with our natural desire, and expectation, to care for our own, parents pursue self sufficiency in their child’s upbringing. While there’s nothing inherently wrong with that, the challenge of raising a child (or more) with disabilities can be incredibly overwhelming. In addition to the typical-parent responsibilities of holding a job, shopping and preparing meals, helping with homework, etc., needs such as providing all personal care for another person cannot be done.
In our family, even one-on-one assistance is not enough. It is not uncommon for both of our twins to have a behavior meltdown, diaper explosion, or reap general chaos at the exact same time. If Carole and I are each dealing with a twin, there’s no one available to handle all the other home responsibilities. While some may say this is true in families without disabilities, the difference is that such a chaotic episode lasts for a brief while in traditional homes, while families with disabilities may be dealing with this for hours.
I believe the most important thing to improve the quality of life for families with disabilities is to get help at home. Nothing else comes close. In addition to providing practical help with the duties and responsibilities, the additional person brings a huge peace of mind which alleviates stress. Having the weight of sole responsibility lifted from their shoulders, the primary caregiver is energized and rejuvenated, able to press forward in ways they never thought possible.
Finding help is much easier to say than do. For example:
- Even if extended family live nearby, they may be reluctant or afraid to help, fearing they may do something wrong or sign up for more they can handle. This fear often applies to friends who say “Let me know how I can help”, but then get nervous when actually asked.
- Likewise, traditional babysitters may be reluctant to help. The very first rejection of our twins came from a teenage girl we tried to hire as a “mothers-helper” when our twins were small preschoolers. Though she accepted the position, she called us an hour before starting her first day and told us she would not be able to take the job. Sensing a parent was involved with this decision, I called her mother for more information. The mom made it clear that our children were not the kind of kids her daughter should work with, and we were out-of-line for suggesting so. It literally took us years to get over that rejection.
- Professional caregivers for people with disabilities, particularly adults, can be expensive. This can be a huge challenge for even middle-class families faced with much higher medical and other expenses associated with disabilities.
Despite these challenges, and as described above, nothing is more important than getting help at home. Here are some ideas to make that happen:
- Put your ego in your pocket, suck it up buttercup and ask people for help. They may surprise you and you may learn a lot along the way. For example, it was not until we started asking everyone we knew about getting help with our twins that we learned about the funds available through out school system. The twins’ teachers and principal didn’t even know about them! However, once we learned about the program, the teachers took lead and helped us secure the funds, which ultimately changed the course of our family.
- Knowing what I know now, I would have dipped into our savings and/or restructured our budget to pay for help earlier. While the lost years due to stress, arguments, anxiety, etc., in hindsight I would have spent tens of thousands of dollars to have avoided that pain.
- Help can be progressive over time as needs change. For the first several years of attendant help, we had a young woman work with us from just 3p-6p Monday-Friday. As short as it seems, this was the life-changing help described above. She helped Carole with the twins from the time they got home from school until I got home from work. Later, she started to work alternating Saturdays and Sundays as well. After a couple of years, we added an additional attendant to work from 6p-9p, helping bathe and put the children to bed. As the twins support needs grew, we grew the support accordingly.
- Family, friends, parent groups, etc., can be a source for finding help. We have been successful finding people through a couple of online services, GoNannies http://gonannies.com/ and Care.com https://www.care.com/. These are great resources for finding quality care providers for special needs children, the elderly, typical kids, and even pets. You can scan the backgrounds of local providers for free, and then join when you want to contact someone.
- While daily in-home help is huge, asking for help in other ways can yield unexpected benefits. My sister and brother-in-law live a thousand miles away. Several years ago I asked them a question I could ask no other person on the planet…”Can you come to Dallas and watch our kids so I can take my wife on a vacation?” To our delight, they agreed and the next year Carole and I were able to escape for a week. As watching twins with severe behavior and support needs can be daunting for anyone, we took our trip during the school year so the girls would not be home 24/7. Upon our return, my sister shared how much they had enjoyed the visit and offered to do so again every couple of years. Since then, Carole and I have had some incredible vacations, enabling us to recharge our batteries. While we have deeply appreciate the uniqueness of this gift, it all started because I got up the courage to ask.
In an upcoming issue we’ll discuss how to take advantage of community programs which may be available. In the meantime, please share your ideas and experience in obtaining help.