Matteo's Network
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Photo of Matteo and his brothers celebrating their
cousin’s wedding. (2006) |
A Mom's Story
Twenty-five years ago, at age 24, I experienced the joy and the
challenge of having my first-born son. Matthew (or Matteo as he
prefers to be called) was born with a condition called bilateral
anopthalmia; he has no eyes. As he grew older it became apparent that
he would also struggle with developmental disabilities and mental
health issues. Although we loved him as our son, the educational and
relational challenges were daunting.
As he grew into a teenager and young adult, a time when all young
people want to pull away from their parents and develop relationships
with their peers, Matteo became increasingly isolated; he had his
family but no friends and no way to develop any of these critical
relationships that teach and sustain all of us as we grow up. When he
moved into a group home at age seventeen his primary relationships
were that of staff to client and he spent the majority of his day
alone listening to music.
When he was twenty I attended a workshop and learned about PLAN and
the efforts of some local families to develop a similar organization
in Seattle. The goal was to help families address the isolation of
their loved ones with disabilities through strategically building
relationships that they are unable to build for themselves. This made
sense to me and we signed up!
A couple of years ago we began Matteo’s Personal Network of Support, and
the change in his life is dramatic. He is no longer isolated; he talks
on the telephone to members of his network on a daily basis. One
important aspect of this increased interaction with people outside his
family is that he has had to learn to negotiate and respect other
people’s needs and wishes. One family struggled with him because he
always insisted on calling during their dinnertime but, as friends do,
they continued to talk with him and he learned to respect their
wishes. These and other skills are ones that Matteo can only learn
when he is relationship with others.
Matteo’s contribution to the people in his life is a quick and
playful sense of humor, a penchant for word play, and a loving nature
that expresses itself in frequent hugs and concern for the people in
his life. The relationships he has developed as the result of his
Personal Network of Support are his lifeline both to bring him out of
a life where he is very isolated and learning the skills to develop
important personal relationships.
And for his father, his brothers, and myself, we have greater peace
of mind that Matteo will not be alone in the future.
Valerie Ohlstrom
A Conversation That Deeply Moved Me
“Right when my jealousy and self-pity created a mountain of anger and
selfishness, Matteo's wisdom brought me flying down from its peak
towards a base of humility, wonder, and happiness. Matteo loved me
because I said something nice to him, and it made him happy. That was
enough. Though so many parts of life seem so much more complicated
than this, ever since that conversation I have been trying to apply
Matteo's wisdom to my life by attacking my most complicated problems
with simplicity.” Read
Rob Ohlstrom’s account of a conversation that changed his life.
Rob Ohlstrom, Matteo's brother
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