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Exceptional families bond in advocacy

Walk to a better future for exceptional children this weekend

Exceptional moms Angela Fish and Lorraine Sotomayor discuss how to best prepare their sons for the upcoming Dare to be Exceptional walk and life in general. Photo credit: Jessica Corey-Butler

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It's Monday morning.  Angela Fish, who heads up the Exceptional Families Network (EFN) as the nonprofit organization's executive director, has kept her son from school because he's feeling under the weather.  He's here with her at the EFN headquarters in Lakewood in a spacious, welcoming office above a physical therapy business; he's too engrossed in his technology to notice he's feeling poorly, or to need his mother.

In the office, Lorraine Sotomayor sips on her coffee and water, and the two discuss the obstacles and hidden blessings of having exceptional kids.  Both Sotomayor and Fish have children with Autism Spectrum Disorder.  Fish explains that before her first son had a diagnosis, she felt overwhelmed.  "I started my own support group; I figured out that I needed help." Her support group was then effectively morphed with the group founded by Therese Holliday, which became fused into the EFN; this was the mechanism through which Sotomayor and Fish met.

Sotomayor is a military family member, with a recently retired (after 27 years) husband, Maj. David Sotomayor.  They returned to the Pacific Northwest to retire after having been at Joint Base Lewis-McChord for an extended seven-year duty station, which had been extended, in part, due to supports they found at JBLM for their son.  Sotomayor describes some of the support that helps her as a military family member, and Fish looks incredulous as she hears about the respite care Sotomayor can, and does receive; in the civilian world, autism is an auto-exclusion condition, with no coverage for the most recommended therapies needed.

Sotomayor clarifies, "even as a military family, you spend a lot of money on the outside." She said, "It's easier having EFMP, however, when you move from base to base."

While the Exceptional Family Member Program provides additional support for families with developmental and learning challenges, Sotomayor described how support for her son changed from base to base, and she has had to learn to advocate.  At one military post, she recalled, there was no developmental pediatrician for her son. Through the military, she sought out a psychiatrist and psychologist, and private schooling, to help maintain the progress her son had made.  "As a military parent, you have to seek those resources - the parent has to be proactive."

Many of those proactive steps for Sotomayor involve her son's education; here Fish shares experiences, frustrations and advice with Sotomayor.  Sotomayor and Fish both have 13-year-old sons with autism who can be placed at the "highly functioning" end of the Autism Spectrum.  As such, and according to Washington state law, the boys are mainstreamed with typically developing peers in their classrooms.  Few supports are given to their teachers, and this concerns both mothers.  

Sotomayor grappled with the idea of home-schooling, but recognized the need to prepare her son for life without her.  She remembered thinking, " I have to prepare you for life.  I'm not always going to be there."  And she recalled, when thinking, "do I home-school or not?  I chose not to ...  I needed to focus on being a parent outside a curriculum."  She lists the contexts she exists in: wife, mother, friend and reflects, "I felt I wasn't going to be the best teacher."

Toward being proactive, both Fish and Sotomayor write letters to their sons' teachers and administrators at the beginning of the year.  Fish called her letter a sort of bible, and in it she outlined her son's strengths, challenges, preferences, and most importantly, triggers and calming strategies.  Sotomayor pens a similar letter on behalf of her son, and goes a step further as she helps her son advocate for himself.  

"Last year, we brought in puzzle piece cookies, bracelets, pencils." And then her son gave a presentation about his neurological differences to his class.  And Sotomayor said, "kids embrace him, look after him."  But still, she said, outside the classroom, "our kids can be targeted easily."  She described a bullying episode recently where her son was being picked on, and his perception was that of being befriended.  And another where he chose to advocate for himself through the use of physical means.

In both of these instances, Sotomayor had to advocate for her child. She said she believes that the mission of parents with exceptional kids is to "prepare our kids for the world." But she wondered, "Are we also preparing the world for our kids?"

Here is where the EFN comes in.  With the guiding philosophy that seeks to normalize special needs toward inclusion; from simple "tolerance" toward "acceptance and understanding of differences," the organization is taking literal and visible steps against bullying with their upcoming Dare to be Exceptional walk for bullying prevention at the Lakewood Towne Center Saturday, from 10 a.m. to 1 p.m.

The family-friendly event will include a resource fair, kids activities, concessions, entertainment and more, across from the Lakewood City Hall.  Festive attire is encouraged - crazy tutus? Loud mismatched socks? Wigs?  Superhero attire?  Bring it all and prepare to be exceptional.

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