By Paula Kavolius
Every day there’s something, isn’t there? Caring for special needs children and adults is unrelenting. It’s demanding, tiring, comical, rewarding, frustrating, and sometimes just off-the-wall insane. Well if there’s one thing I’ve learned as the parent of a son with special needs it’s that there are three things necessary to survive. Here they are:
Embrace your challenge. This is the most important survival technique that you must learn. Sages of all religions recognize that all people are born to struggle. Most of us learn that without sadness, we can’t know joy; without failure, we can’t know success; without pain, we can’t know success. Nothing that is worthwhile in life is achieved without hard work and perseverance. But each of us can only do the “best we can do” every day and hope that eventually all those single days will add up to a result that we desire.
The day that you truly embrace your challenge will be with you until the day you leave this earth. It will be indelibly marked as clearly as the day that you met your spouse or the day that you met a mentor that dramatically changed your life.
Have you embraced your challenge? Tell us about your journey.
Have a sense of humor. This is vital to survival when caring for a child with special needs. Laughter is well known to be the “best medicine” and also triggers healthy physical changes in the body. Additionally, humor actually will strengthen your immune system, boost your energy, diminish pain, and protect you from the damaging effects of stress. There isn’t a day that goes by that I don’t laugh with my special needs child or the children that we serve at our House of Possibilities.
I will share a story with you. My husband had been unemployed for 40 weeks and accepted a position that would require travel on the East Coast. On Day One of his new job, I was thrilled that for the first time in almost a year, I could stay in bed and not get up to get everyone where they needed to go. I asked my husband if he would dress our youngest son, Tim, before he left for Philadelphia. He grumbled, “Yes.” I bounced down the stairs like Tigger and proceeded to make breakfast and put Tim on the bus. About an hour later, I received a phone call from the school. The school nurse wanted to know if everything was “ok” at home. I said, “Yes, why are you asking that?” She replied, “Well, Tim came to school with no pants on today.” I was driving down the road and had to pull over I was laughing so hard. My husband had put a big football shirt on my son that came down to his thighs and did not complete the task of putting on his pants. I thought he simply put one of his brother’s shirts on him and that he was ready for school. The nurse and I laughed together as we determined that he did in fact have underwear on, just no pants, so things were not that bad. I had a choice whether to laugh or cry and I chose to laugh.
William James, the father of modern day psychology once said "The greatest discovery of the 20th Century is that our attitude of mind determines our quality of life, not circumstances."
What about you? Am I the only mother who has sent her son to school without pants? If something crazy has happened at your house, let us know. And remember, always choose to laugh.
Arrange for respite care. Does it take a village to raise a child with special needs? Unfortunately that village isn’t so available any longer. Gone are the days when neighborhoods would chip in and alternate care of children. So the stress builds on families. Respite is as short term care that allows a family time to take a break from the 24/7 responsibility of caring for a child with special needs. It took me many years before I would allow others to provide care for my son in our home. Once I did reach the point where I would allow someone in, I soon realized that many respite caregivers are undependable and that often times respite in our home was no respite at all. Thus, with the House of Possibilities, we decided to build a respite facility that would serve families when they needed respite most; on weekends and for overnight stays.
Babysitters do not have the skills required to care for a child who may not behave as typical peers. High quality respite facilities should have a two pronged focus: specifically, to engage children in meaningful activities and to allow families to tend to the needs of other siblings, spouse, etc.
Respite has changed our ability to care for our son. Would you like to share a story about what respite has done for your family?