Today Dilara Mitu, Managing Trustee and Director of the SEID Trust took the time to visit Shema Kolainu in the hopes of starting a collaborative relationship and learn some best practices used at the center. The SEID Trust is an … Continue reading
How do we teach children on the spectrum to be confident and independent self advocates? When children are young the parents or caregivers have the responsibility of fighting for health insurance coverage so that they have access to all the appropriate therapies that they need, for example. However, as Sharon Fuentes, a blogger in Northern Virginia and a mother to a boy with Asperger’s, point out, “I’m not always going to be here. My main goal in life, for any child, is to raise an independent, responsible adult who is able to function in the world and be able to contribute to society. We all have to advocate for ourselves. The reality is that with special needs kids, if they able to learn these skills just by watching, they would. But they can’t so we have to teach them.”
Parents can help their children be better self-advocates, as they grow older. First the child should be aware of what his/her needs are as well as her specific strengths and weaknesses. Jim Ball, executive chairman for the national board of the Autism Society says that you want to make sure that your child also knows how to filter the information they give out about themselves. “They are so trusting of people and so open and honest about who they are, which is one of the qualities I love most about them …so you have to teach them that there is a time and place to discuss it.”
Here are some tips on teaching your child to express their diagnosis and express their specific needs
– They should understand the difference between needs and preferences. For example, for Fuentes’ son, who is 13 years old, she had to explain to him that sitting close to his teacher in class was a preference, while having a quiet space to retreat and collect his thoughts when he gets overwhelmed is a need.
– Writing a note to their teachers. For older children especially it can be a useful exercise to write a letter to each of their teachers to explain who they are, what they like and dislike, what causes them stress, and what they most need to succeed. This is not only great for their own self-awareness, but also a great resource for the teacher.
– If it’s possible, include the child in their own Individualized Education Plan (IEP) meetings. They can voice concerns over situations that may be problematic for them as well as gain a better understanding on how things work. “Just asserting what they want is important for anyone to be able to have a sense of self-worth, and a sense of confidence that you can share what you want and people are listening to you,” says Fuentes.
– It’s important to talk about who are “safe people” when it comes to sharing information about themselves. They do not need to tell everyone, including all of their peers, where someone may use the information against them in the case of bullies, for example.
– There are many books that can help with advocacy. Jim Ball recommends “Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum,” edited by Stephen Shore.
The blogosphere has opened up a cyber-consciousness of daily reflections, trials, tribulations, and inspiring anecdotes. One man’s personal ramblings are another man’s insightful resource. But blogs can end up like locked diaries if lost in the internet-abyss, so we are passing on a few of our favorites to keep the dialogue going. Though blogs are relatively easy to produce through various blog-hosting sites, sharing personal stories and ideas may not be so easy. Non-bloggers can broaden the community of support by simply sharing a site name or commenting on a post. Yesterday’s flash blog event, #AutismPositivity2013, opened up the autism dialogue for non-bloggers even more, inviting anyone to share their thoughts or stories by submission and ensuring their additions would not sink into the abyss by promoting the blog site and flash blog event in advance.
A member of the #AutismPositivity2013 flash blog team happens to be one of our favorite autism bloggers: Ariane Zurcher of Emma’s Hope Book, an inspirational and informative personal saga written by the parent of an autistic. Zurcher is writing is so honest, poignant, and fluid that we would not be surprised to see these posts laced together in a book sometime down-the-road.
While moms, like Zurcher and Kristina Chew of the heartwarming—and religiously updated—We Go With Him, tend to blog more often than pops, one dad’s blog brightens our day. Austintistic is a dad’s love note to his son, Austin, who has autism and osteogenesis-imperfect, ODD, ADHD, RLS, OCD… you get the idea? Austintistic puts life into perspective with humbling humor and fatherly audoration. The blogger, Scott LeReette, has recently published a book “The Unbreakable Boy,” which you can find at austintistic.com.
With awareness growing and autism topical, doctors are diagnosing high functioning variations of autism among adults more and more. Often these diagnoses are spurred by a child’s diagnosis drawing attention to a parent’s behavior. Writer of another favorite of ours, A Quiet Week In The House, reflects on the life of an autistic mother of an autistic child, accentuating the “ausome” characteristics of autism and providing insight from a variety of perspectives. Blogger Lori’s son was diagnosed with autism in 2009, followed a year later by her father with Asperger’s, and then, herself. Lori creatively expresses and tracks her emotional experience with beautiful scrapbook style graphs and charts.
Art expresses the autistic experience so often better than words. Autism advocate, matt, illustrates the inside scoop on what it is to be autistic in a different medium and style than Lori, with cartoons and comics on his blog Dude, I’m An Aspie. This blog is charming, honest, and just plain funny—definitely an SKHOV favorite.
Share your favorite autism blogs here!