Listen here to a moving commentary by a National Public Radio listener, Jennifer Hendrick, about how she deals with other parent's reactions to the behavior of her son on the autism spectrum.Jennifer talks poignantly about something we don't hear about in IEP meetings - the impact of loneliness in the lives of people with disabilities and those who care for them. Professionals who work with our families don't always talk about loneliness either, or the importance of relationships for our kids.
David Pitonyak is one exception, he believes our children are often lonely and that it is very important that we build their relationships with family members and community members - that we have people in their lives who are NOT just paid caregivers or teachers. I encourage you to read a few of his articles on the importance of belonging.
Sayer loves to hear a list of people who love him in his life. We do this while he is lying under his weighted blanket while I squeeze him in the mornings, to help calm him down before school. I squeeze him while singing "So and so loves Sayer, so and so loves Sayer" as in "Mom loves Sayer, Dad loves Sayer, Jacob loves Sayer." I continue on to name relatives, friends friend's parents, teachers, and so on. If I forget any he reminds me, and he looks right at me and is so engaged during the whole list. I can tell it means so much for him to know there are many people in the world who love him.
What role does loneliness play in your family? Do you think that society isolates us and our children? How have you built relationships?
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I have actually 'lost' friends due to Brian's autism, but then I have gained ones, too. I just figure that I wouldn't want those people to be my friends if they don't accept my family (I accept theirs and their issues). There are also those who have never met Brian, but listen to me rant/rave about something related to him. This is how I am...
I have told family members that he does have feelings (belonging, need to be loved, etc), just like any other kid in the world. I know this (besides my observation of him), but of seeing you tubes of kids/young adults who do better at expressing their feelings and videotaping/blogging about it.
Katie
Thanks for sharing this, and for telling about your wonderful ritual with Sayer! I used to do the same thing with my son, and I don't know why I let it slip away with his babyhood. It's lovely.
Katie,
Do you have links to those you tube videos? I'd be interested in seeing them; others here might, too.
Susan,
Our kids sure love our rituals. I guess I should use this as a reward, but it makes him so happy - it is ok to do some things just because, right? Sometimes I feel when I find something Sayer responds to I "should" leverage it somehow.
True. The Captain made it clear over the past two years (5th and 6th grade) that the driver of his 'special' bus was his best and perhaps only friend. How difficult is that? He just seems to alienate people as fast as we can introduce them. :(
Carol, There was actually a news story on those young adults on 60 minutes or something like that about a year ago. I can't remember her name, but she is famous on youtube! I am sure Brian could find her (LOL)!
Katie
Carol~
Thank you for touching on something that mostly goes unsaid. We too worry about our son's relationships. His main diagnosis is not autism, he has cerebral palsy. However, like many with CP, he has features of a myriad of other things, autism being one.
We strive to help him form relationships knowing that they will only last as long as the heart of the little girl or boy we're 'forming' with sees through to the heart of our son. If that makes sense. He has amazing relationships with his family and neighbors who see him as inspirational and "magical".
As for us, we're pretty isolated. Only my side of the family really "gets" the true scope of Alex, and our friends mostly hadn't gotten it at all...we no longer have those friends. This, was by our choosing, but it's still an isolation in the end.
Thanks again for touching on this.
Mia,
That is too sad about your friends but be lucky you have neighbors who appreciate Alex. We are lucky, too, in that way - we have yet to have a neighbor complain when he bangs on the light posts.
It was actually a neighbor dad who taught Sayer to ride his bike and all the other neighbors cheered. That really warmed my heart!
Hello friends, yes and yes and yes. I have felt isolated and left out and so has everyone in our family, at different degrees and at different times in our lives. But, there is a bit of hope: I received a call last night from Columbian (Vancouver, WA) newspaper reporter who is going to interview me and bring a photographer to a simple program we started at my church called Open Sanctuary. It is just like an ongoing Open House but we call it Sanctuary because it is a church. No service, no sermon, no money collection, just stop in and visit. David Pitonyak met with me and some other church members last year to give us advice on how to be inclusive and welcoming. This is not about any particular faith, (David identifies with Buddhist traditions), but making our time together on earth as loving and caring and kind as possible. Any one who wants to come out for possible fame in the paper can join me and whomever else drops in anytime between 6:30 and 7:30 pm. this Wednesday night. First Presbyterian Chruch, 4300 Main Street, Vancouver. There is a chalk walking labyrinth, fenced in playground, and simple optional craft,too.Pam
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