By Michelle DePolo, Psy.D., Pediatric Psychologist, KidsLink Neurobehavioral Center
It has been well established that parents of children with autism experience greater stress than parents of children with other developmental disabilities. Whether it is trying to determine what your child is attempting to communicate, managing self-injurious behaviors, or creating a daily structure and routine that minimally changes, numerous factors converge to make many moments throughout the day a daily struggle for parents of kids with special needs. As a clinical psychologist, I hear first-hand of these struggles on a daily basis. Consider the following (all identifying information changed to protect confidentiality):
- Said by a mom in tears as she talked about her third grade son, who is two years below grade level in his academics “I don’t want him pulled out any more than he already is, my sister was pulled out while she was in school, and she missed so much socially and just became depressed over the years.”
- Said by a mom referencing the time period when her son was diagnosed with autism, and having to deal with a boss whom she described as having “no idea” about what it means to have a child with special needs “My boss sat me down and told me I just needed to ‘concentrate’ when at work. He said I was at risk for doing my job and that my performance has been steadily declining for the past couple of years. Oh, go figure, ‘a couple of years ago’ my whole world was overturned.”
- Said by a dad who recently applied for family and medical leave to ensure his job security due to his needs to request time off to attend numerous medical, educational and psychological appointments “I feel so thoroughly exhausted by the time I handle all the behaviors that morning and just get him off to school, and then I’m supposed to start my day and do well at my job.”
- Asked by a parent of a child with high-functioning autism “What am I supposed to tell my son, who keeps having kids come up to him on the bus or playground and asking, ‘Why is your brother that way, why does he act like that, make him stop. He is so annoying.'”
- Said by an advocate “We need to figure out a plan for this kid. He is 18, 6’4″, very large, aggressive, parents do not know how to help him. I think they are afraid of him.”
- Said by an advocate “This student has not been in school since last spring. Ms. Smith is not sending him back because she can’t be sure he is safe. He has a spot at another program, they think they can get him in by January, but they can’t guarantee this. We need to find a place for this student. Mom is really ‘losing it’ over what to do to help him.”
- A father who is now singlehandedly handling educational advocacy for his son, because his wife is dealing with the recent loss of her mother, shared the following hypothesis about why the child’s aggressive behaviors have returned “Some people know how to de-escalate behaviors in our kids and other people have no idea how badly they are escalating them.”
These represent just some of the concerns shared with me during a single day of clinical practice.