SPECIAL NEEDS AWARENESS
Though it isn’t directly related to parenting, interacting with people who are different from us is related to being a kind human being in this world, which is what we are raising our children to be. Your children have a greater chance of encountering people with special needs than you did in childhood because diagnoses are on the rise and there is a larger emphasis on inclusion these days. It’s personally meaningful to me because I have worked with people with special needs my whole adult life, starting at age 16 when I was a caregiver for a man with a brain injury who was non-verbal and confined to a wheelchair. To look at him, you would think he was lacking in his mental faculties. But he could comprehend everything going on around him, he was simply limited in his ability to respond. He was able to answer yes or no questions by nodding and shaking his head and giving thumbs-up and thumbs-down signals. When I first met him, I was intimidated by how he looked and unsure how to interact with him. The first time I realized how aware he really was, we were watching a television show and I noticed how he would laugh at all the funny parts. It didn’t take long for me to understand he was a thinking, feeling person with the same basic desires that any able-bodied person had. People like him want to be treated with respect and dignity, and they want friends.
We have to put our own discomfort and uncertainties aside, and be open to learning about people with disabilities to show them they are a valued part of our community. Just showing curiosity is an excellent start, and kids are actually better at this than we are. Part of your job is to guide your child on how to comfortably and respectfully interact with others, and part of your job is to stop inhibiting them from doing just that when it comes naturally. Increasing visibility is a crucial part of abating discomfort. Collectively, we need to encourage people with special needs to have a presence in pop culture, media, politics, classrooms, community events, and so on. As a parent, you can choose books and toys that represent people of all abilities; seek out inclusive movies and television shows; get to know your neighbours; talk to your kids about differences.
Often, people don’t talk to or about people with special needs because they don’t know how. They are afraid to use the wrong language or receive a strange response or no response at all. I will outline some common courtesies when engaging in discourse with or about people with special needs. First, it is respectful to put the person before the “disability” when referring to them – Person with a Disability versus Disabled Person. Using the word “normal” to describe the people without special needs is an insensitive use of identifying language – “typical” or “neurotypical” is a better way of describing it. If you accidentally use derogatory or dated language, there’s no need to be ashamed or embarrassed – just be willing to be corrected and use the appropriate terminology going forward. If you are addressing a person who is non-verbal, it is respectful to make eye contact with them, use their name and talk to them when asking questions, even if their parent or caregiver is the one responding on their behalf.
When talking to parents of children with special needs, listen with compassion. It’s really difficult to comprehend how much they have on their plate – constantly learning, trying different therapies, going to appointments, dealing with guilt and disappointment and the guilt from the disappointment, being a full-time advocate for their child. You don’t need to say positive comments or tell them to look on the bright side. Resist any urge to point out their child’s needs are not that different from other kids the same age, and don’t tell them a story of the family you know who has it worse. Don’t make jokes about it, unless you have that intimate of a relationship with them. A girl I worked with has a rare condition called Prader-Willi Syndrome, and one of the symptoms for those individuals is that they never feel full, no matter how much they eat. They would literally eat until their stomach perforates. Do you know how many times her mom hears the joke, “I think I have that problem, too,” when she tells people her daughter is always hungry? It’s not funny from the parents’ perspective. It’s hurtful and it hits hard.
When talking to parents of children with special needs, try to come from a place of, “How can I help?” For example, how can I help your child feel more comfortable? How can I include them? How can I make it easier for you? What accommodations would they appreciate at a play date or birthday party? What conditions – for example, loud music, food availability, being touched – tend to trigger or upset them? Try to meet the child where they are at. If they can’t talk, take an interest in an activity they initiate, or do different activities side-by-side. If they seem anxious, give them space and time to acclimate to you. Remember, just because they don’t respond verbally or make eye contact, doesn’t mean they don’t want to engage. The typical social cues don’t always apply, which is why we need to make the extra effort to find points of connection. Nothing makes a parent happier than when friends take a true interest in their children, and it means so much more to a family with a child with special needs. My kids have been around people with special needs more than most because of my line of work, and it’s had a positive impact on them, the individuals with disabilities and their families. It brings me joy to watch my kids interact with other children – including those in wheelchairs, with nasogastric tubes, epilepsy, post-traumatic stress disorder, autism spectrum disorder, mental health issues, refugee status, and others – in a way that makes those individuals feel safe, supported and accepted. This is the kind of world I dream of and, through awareness, we can achieve it.