No labels:

“As parents, we know in our hearts what our kids need,” she says, “and we need to trust that a little more. Even if that goes against what others are saying.”

“A lot of people thought that I had lost my mind,” she recalls.

How do we know that being autistic  is NOT a blessing?  Maybe it’s a blessing we cannot or will not recognize because we “normal” people focus on  what’s “wrong”or not “normal”.  Or “different”.

Jacob is different, and it’s not just because of his autism.  He is different because his mother broke away from traditional modes of special education that focus on trying to make a kid more “normal” and less “different”.   Rather, she took a courageous and radical approach that led him even further away from “normal” and ultimately to his passion and his niche in life.  Which just happens to be a brilliant career in math and science.

That possibly will win him a Nobel Prize.

Jacob is happy he is autistic because he’s happy being himself.

While schools (and special education schools) can be good for learning, they aren’t so great for thinking.  And they are especially not so great at encouraging thinking outside the box.  Good learners are only as good as the last textbook they memorized.  Good thinkers break rules, create new ideas, and are self-driven and motivated because of their joy and excitement about their chosen passion.

Not that choosing a different way is the answer to Jacob’s challenges:

But Jacob, as he says, didn’t wake up one day magically “cured” from the disorder. He continues to fight it. Sitting in the airy kitchen of his home, he points to a shelf unit. Sitting in that small space would make him feel more comfortable. The buzzing of lights also can become upsetting.  “He overcomes it everyday. There are things he knows about himself that he regulates everyday,” his mother said.

Not every autistic child  will become a potential Nobel Peace Prize winner.  Just as there are children who are completely free of any mental or physical challenge who won’t win any world famous prizes either.  Challenges come to everyone.  I am not being glib or dismissive of people with significant physical and mental challenges and how frustrating and heartbreaking it is for their families.  Not at all.  I don’t know their particular story and how they deal with it.  I do know mine, though.  And while we have very different kids with very different challenges, Kristine Barnett and I are very much alike.

I was told by a certain doctor, after an examination, that our tiny daughter, because of the effects of congenital hydrocephalus, would most likely never walk and probably never talk.  And would have significant learning disabilities.  I wasn’t devastated.  I was pissed off.   Not at his diagnosis.  After all, he was just following protocol and didn’t want us to get our “hopes up”.  But I was furious because this man, checking his watch while uttering his pronouncement, limited our daughter without knowing her or us.

Aside from the surgeons that would fix the mechanics of her various shunts some 58 times through the years, we never again sought the opinion of anyone who thought hydrocephalus was a disability in need of special education or therapies.  She was plopped on the floor right in the middle of the household chaos of  two brothers and a sister and she figured out that talking, walking, and learning were abilities worth fighting for.  So we helped her do both, on her terms and with her feisty determination.  Her therapists were her siblings, mostly, along with classmates and wise and not-so-wise teachers along the way.   She learned from encouragement AND limitations placed on her by other people.  Every time she had a shunt failure and was hospitalized to replace it, the “experts” showed up to urge us to seek “special education” or therapies that we refused.  Not because we were against intervention or therapy – but because we knew our daughter way better than anybody else and knew this wasn’t on her or our agenda.  We completely rejected labels, warnings and sympathy.  We helped her pursue what she loved and what let her express herself best.  We took long breaks from school after surgeries and didn’t worry about appropriate levels of traditional educational accomplishments.  At one time, she got involved with a hydrocephalus “support” group and while she valued the kids there and related to their struggles, she ultimately felt she didn’t want or need to be identified as “having” or “being” hydrocephalic.   She eventually graduated from high school, then college, and now has a great job she loves.  It’s not Nobel Prize stuff, but everyone she works with and everyone she comes in contact with thinks she’s a wonder.   And this includes a former President.  She loves her life, regardless of her challenges, which are daily.  And she has told us numerous times that while dealing with so many surgeries is “a pain in the ass”, she wouldn’t change a thing about her life.  Having hydrocephalus is a part of her and her life.  Just as autism is part of Jacob’s life.

I don’t think she’s wonderful because of hydrocephalus….I think she’s remarkable because she hasn’t let her challenges define her.  She cares deeply for people and they know it and feel it.  She is deeply religious and her aura of faith brings people peace and comfort.   She found her passion, which is compassion for others.

And that’s her Nobel Peace Prize.  And ours.