Greater compassion can greatly aid families of people with special needs
Although 1 in 68 are now diagnosed with autism spectrum disorder, many people are unclear about what families endure or how to deliver much-needed compassion to those impacted. By sharing some of the myriad challenges which parents, guardians, and siblings of those with autism experience, my hope is that as a community, we can collectively show greater compassion to families of all people with developmental disabilities. Maybe you don’t have a good grasp on why these families are so burned out, what daily life is like, or what’s behind their decision to place their children in a residential program. Oftentimes, parents of children with special needs report feeling “judged” and “ostracized” by those who scrutinize their parenting decisions, leaving them feeling lonely and misunderstood. It’s time to promote greater understanding, and thus, greater compassion. To shed light, here’s some insight on what the journey is like, directly from a parent of a child with autism, Leah H.:
On pursuing residential placement:
“The reasons for residential placement were multi-faceted. My son Mendy has severe autism. He has an older brother and a younger brother, and needs constant 1:1 supervision for his safety and the safety of his siblings. Juggling his needs at the same time as his brothers’ needs was draining. Hours were spent researching, networking, interviewing, recruiting, and scheduling his caregivers and providers, and inevitably some of them did not show up or were not a good match. He was kicked out of many respite programs because they simply couldn't handle him. The ever-changing school calendar and many days off were not conducive to providing an environment of consistency; transitioning back to school after a long break was incredibly difficult. In addition, Mendy's behaviors worsened as he grew older, taller and stronger, to the point that I was afraid to be home alone with him for an extended period of time. He refused to get on the school bus in the morning. He tried to escape the house many times, and I was terrified to take him out by myself since he frequently bolted into traffic. He was often up at night for hours, waking the rest of the family and leaving us exhausted. We had to install a special door on the kitchen, as he wanted to eat around the clock (which he eventually broke). He slept in a special zippered bed tent, which he constantly tried to escape from. Family events like weddings and holidays were very stressful as we had to figure his schedule around them and find caregivers to stay with him. There was a lot of stress in the home; we always felt torn as we tried to give his siblings a normal, stable childhood while figuring out how to keep Mendy safe and occupied. At first we had all kinds of therapies and activities for him after school, but he didn't cooperate and spent most sessions screaming or eloping. Eventually there was just no gas left in our tank, so to speak, and we just focused on survival. Finding a place where Mendy could learn the skills, have an improved quality of life — while at the same time giving his brothers the possibility of growing up in a stress-free environment — became paramount. It was an extremely difficult decision. For years I battled concerned relatives and friends who were urging me to look into placement for Mendy when he was just five years old! I protested that he was a baby and his place was with his family. Things became serious when he was 7, but it took us a while to get approved for residential placement. By the time he moved in to Anderson Center for Autism at age 8 1/2, I felt somewhat more ready — though not fully ready. It really was the right thing to do, even though it hurt so much.”
On life since residential placement:
“Placing a young child in a residential program is an incredibly difficult decision for the parents. It is obviously optimal for a child is to grow up in his own home with his family. But when a child is clearly not thriving in his home because his needs are too overwhelming, and the rest of the family is falling apart from the weight of the stress of meeting those needs, a residential program like Anderson is a lifesaver for everyone involved. However, there's a huge void left at home when a child moves out, especially if everything in the home revolved around that particular child. It took a while to figure out what my role as his mother had become. I am no longer involved in his day-to-day life. I visit as often as I can — it is a long, 2 1/2 hour ride away -- but there is a Mendy-shaped hole in my world which has been a struggle to fill. I miss him a lot, but I know I did the right thing for him, as he is much happier than he ever was at home, and he is making great progress. He is calmer, happier, and more compliant. He is sleeping in a regular bed, is wearing real underwear instead of bulky, wet diapers, and eating healthier food. He has wide open spaces to roam around, a staff at his beck and call who spare no effort at making him happy and helping him grow and mature. He has lost weight and looks amazing! He is neat and clean, groomed and cared for. He has many more recreational opportunities than he had at home -- he regularly goes to the movies, museums, bowling, and nature walks when the weather permits. His medical, dental, nursing and psychiatric care is much more streamlined, and way less traumatic for him than when he lived at home and had to schlep far distances and wait for long times in waiting rooms to see doctors who often didn't know how to handle people with Autism. Anderson has given Mendy a new life — and given us, his family, our lives back too!”
May this mom’s perspective serve to remind us that while there’s no way to walk in someone else’s shoes, we can all learn by asking questions and giving someone the space to share. In doing so, there’s no doubt we’ll become more compassionate — not only to parents of children with special needs, but to all fellow humans.
Patrick Paul is the chief executive officer and executive director at Anderson Center for Autism