In the mid 1960s, my father’s cousin delivered a baby son with Down syndrome. I was 13 years old and it was my first exposure to disability. Although the family lived a distance from us, I would see Armen, my cousin, at extended family occasions during the year. Yes, there was a sense that Armen was different, but it was clear that he was part of the family. During his youth, Armen’s family moved to California, so I don’t know how I would have behaved with him as he got older. But he did get to be near his first cousins who, from all accounts, were happy to have him close.
If a child with a disability is going to feel accepted, it seems three environments are significant beyond the immediate family: the extended family, the neighborhood in which he or she lives, and the child care or school setting depending on the age of the child. These also are the settings where you can begin the journey to social inclusion.
I thought a conversation with Evelyn Hausslein, past board member, founding director of SupportBrokers and thoughtful mentor might be a good idea. I remember her sharing some experiences about extended family and her past role overseeing FCSN’s Early Intervention training center for staff and families, which gives her great insight on this topic.
Evelyn made her comments around two themes: communication and participation. I hope you’ll appreciate the ideas and insights she shares with us.
“Over the years I’ve become more aware that at a certain age, say 4 or 5 years, a younger cousin will notice that our son Tom is different. I may wait to see if the child will initiate this awareness or perhaps, as a parent, I may decide that it’s time for me to begin a conversation. I suggest to the mother how to talk to the child. I say, you may wonder why Tom speaks this way or that he’s a little different. I mention, that’s the way he was born; he’s just a little different. Let’s look at one thing he does well and one thing he does differently. After that discussion I let the subject go and leave it to the parent to follow up if needed. They know that it’s ok with me to talk about it or ask me questions. I’ve also modeled how they can talk to their child about the subject. But it’s important that I’ve left them with the message that they can bring it up with me again later.”
Evelyn will talk to the young child too, if she is close enough.
Evelyn had mentioned her son Tom’s connection to some of the cousins in the family. So I asked about the history around that.
“I felt it was important to take my child to birthday parties, weddings, family reunions and any other event where we would typically go. If there was a situation where Tom wasn’t invited, I also would refuse to go. Although keep in mind that there may be a situation such as a wedding where it may be an issue of head count and cost, not bias due to disability.
With local families, I would bring Tom to age-appropriate birthday parties or ones that are mini-family events. We continue to have family reunions, and there are nephews or nieces who readily invite Tom to do an errand or activity with them. Some may not even know him well because it could be an infrequent event spaced out by years. Not too long ago I was surprised to see Tom helping a relative with his motorcycle. The cousin invited Tom to help repair the cousin’s motorcycle and then took Tom for a ride. Over time I developed a sense of those I can trust with Tom as well.
Sometimes families surprise you with their decisions. I remember one wedding where relatives sat him with same age peers when he was in his 20s. I feared how he would do in the group despite my wanting that for him. It did work out well.
Seeing positive results takes time. I don’t think you should expect too much to begin with. Take advantage of the occasions which happen, even if only a few times each year.
One of Tom’s cousins lives near him in the city. She is younger and got familiar with Tommy over the years, during holidays primarily. She went into the helping profession and she has said she was influenced by Tom to go into that direction. He’s over to her house now a number of times a year for dinner.
Of course, sometimes you may have an awkward situation that you have to address. One of the youngsters became uncomfortable with Tom. We figured out that though well-intended, he was probably hugging too much. After a period, the youngster felt comfortable again with him.
So I would make sure the family knows who your son or daughter is and has the opportunity to get to know him or her. Give them permission to ask questions and a relationship will evolve. Perhaps one of them will even go into the field. Perhaps four of sixteen cousins know Tom well and one has a special relationship with him. It does happen – you have to set the atmosphere.”
Now if — unlike Evelyn — you don’t have family nearby, you can apply these ideas to your neighborhood or community. Over time, you can set the atmosphere to build relationships.