Be wary of offering ‘help,’ and other ways to support families with disabilities
When my son was born sick, and eventually diagnosed with severe disabilities, friends helped in a variety of ways. One friend texted several times a day to let me know she was thinking of us without expecting a response in return. Another friend let me vent over the phone where I repeated and tried to understand constantly changing news I received from doctors.
Today, the best support a friend can give me is through inclusion. Finding little ways to help my son play a sport, make a craft or even get into someone’s house for a party allows him and the rest of my family to all be included equally.
After more than a decade of parenting a child with severe cerebral palsy and other challenges, I’ve figured out how my friends can support me and what they should avoid. I use this same strategy when I learn that a friend’s child has received a new disability diagnosis. Here’s what to keep in mind, knowing that your friends might need something different than I did.
When my son was younger, we managed a lot of doctor and therapy appointments. Back then, having a friend listen and hear my frustrations as I navigated his medical care helped me so much. Someone sending a quick text to say hello or to see how an appointment went or sending an invite to take me out for coffee (even if I couldn’t always go) were great ways to offer support and stay connected when I was managing a lot.
How you can help teenagers make friends and enjoy life
While many have family to support them, almost three-quarters of people with learning disabilities do not have a partner. Parents or other family often double-up to provide personal care and sometimes people with complex disabilities can feel the only people they ever see are workers or carers.
Meanwhile, 82% of children with learning disabilities face some form of bullying.
That is why the response to 15-year-old Stuart Harper, a member of Enable Link, is so remarkable when he speaks about his learning and reading difficulties. Quick as a flash, his friends contradict him.
“He’s improved a lot now,” says Hassan Ali, 23. “Yes, he has definitely. Your reading has dramatically improved, I’m amazed by that,” says 18-year-old Andrew Petrie.
All of the group – numbers are made up by David, Andrew’s 16-year-old brother, and 18-year-old Liam McCarthy, are firm friends now. But all have struggled socially due to conditions including autism-spectrum disorders.
“I never used to go out much, I don’t have friends outside this group really,” Liam explains. “It is difficult for me, I’ve got language problems,” then after a pause as if to test the water, he blurts out: “It’s Asperger’s.”
Several of the boys recount tales of a school life featuring bullying and ostracism. And they explain how attending a large weekly Friendship Group run by Enable Scotland – the charity supported by this year’s Herald Christmas Appeal – has changed their lives.
In my 25 years in mental health and special education services, I have had the opportunity to evaluate and diagnose numerous children with educational disabilities and psychological disorders. Since the evaluations have allowed me to work closely with families, I have been able to observe the reactions of parents while learning whether or not their child had a disability.
Parental responses vary; however, the one reaction that consistently occurs from fathers is grief. With grief comes distress and frustration during and after the feedback portion of the evaluations, or when the results of the testing are shared with them, then the diagnosis. Couples often seem to be at different stages in grief with mothers appearing further along in the journey. Men tend to withhold their feelings and outwardly accept the outcome while internally they are grieving. The point of this blog is to recognize how difficult this process can be for men and to highlight how their reactions to the evaluation results are well-matched with the stages of grief.Men, Women and Grief
Although there is mixed empirical support for Elisabeth Kubler-Ross’s Grief Cycle (1969) anecdotally, I do see a pattern when watching parents come to terms with their child’s evaluation results. I use the Grief Cycle (Denial, Anger, Bargaining, Depression, and Acceptance) to describe how men cope with a diagnosis. These stages are not linear and, in my observations, when dealing with a diagnosis, men hover between anger (anxiety) and bargaining (struggling to find meaning) to depression (overwhelmed, helplessness). However, women, often seem to be at the acceptance stage (exploring options, creating plans to move on) by the time they receive the feedback and diagnosis.
This can impact the parents as a unit. Being in different stages in the process seems to be the reason that some couples were in conflict. Some men needed more time to accept the results and conditions. The disconnect led to men feeling unheard and unsupported. When this happened, I would provide them with the opportunity to communicate. In their quest to understand how the condition happened within their child, they would often ask me: