Embracing the unknown: Exceptional family member brings challenges, blessings
July 25, 2008
By Jason L. Austin
Herald Post Staff
After being told by doctors at the Heidelberg University Frauenklinik that our unborn son would probably be born with non-functioning kidneys, my wife and I prepared for the worst and prayed for the best.
The next day Isaiah was born, and life hasn't been the same since. Ultimately his kidneys were working, but because of a blockage in his urinary tract, they were engorged with urine, stretched to twice the normal size.
Four surgeries, countless kidney infections and a year later, Isaiah was given a clean bill of health. We still give him lots of fluids, check his urine for signs of infection, and the doctors test his kidney functions annually.
More and more, though, my wife and I are beginning to understand that was the easy part. A much more evasive foe has crept into his young life - Pervasive Development Disorder - Not Otherwise Specified.
As impressive and allusive as the name sounds, PDD-NOS is an autism spectrum disorder that basically means Isaiah shows some signs of autism, but not some of the more signature traits. If he were filling out a job application, under autism spectrum disorder, he would check 'other.'
What it means in real life is that at 3 years old he speaks just a few half words. He just said "Ma" for the first time July 7. Other verbal sounds he makes, and understands the meaning of, include "Da" (dad), "Yeah" (Yes), "Mmmm" (Moo, as in cow), "Baa" (as in sheep), and a slurping sound anytime we pass by an ice cream shop.
To his credit, he knows about 30 hand signs, mostly slightly modified versions of American Sign Language.
He doesn't always play well with others - he likes to pull girls' hair, especially his sister's and is obsessive with water and food - his only real vice. When Isaiah gets mad, he often reacts by self abusing - hitting the table, floor or nearby wall with his hands or head.
Of course those are the hard moments. At his best he is a loving 3-year-old boy who wants to give kisses and hugs to those he knows, and waves and smiles at every stranger he sees. He loves to run free, and if you put him in an open field and just follow him, he'll take you on an adventure.
It's the adventure he brings to our lives that my wife and I sometimes sit up late at night and talk about.
With our older son and daughter, we worry if they'll love God their whole life, if they'll find a wife or husband who shares that love, if they'll find a career they enjoy, if they'll visit often, and if we'll have grandchildren.
With Isaiah we worry about him being able to speak, bath himself and stay out of the road. They aren't just the normal worries about his toddler years - these are life-long concerns for us.
On those, thankfully rare, occasions when I ponder the future, I wonder if I'll be a 60-year-old man still giving my 31-year-old son a bath every night. If that is what God calls me to do, I'll be first in line, but like all parents, I pray that Isaiah will live to his fullest potential, whatever that may be.
Having grown up with a severely handicapped sister, and my mom working at a center for mentally handicapped clients, I know my wife and I have been blessed with Isaiah.
More and more kids, one out of 150, are being diagnosed on the autism spectrum, according to Autismspeaks.org, and there are four times as many boys diagnosed. The causes are unknown, with theories like mercury-laced vaccines, allergic reactions to gluten and casein (wheat and dairy products), or longer than normal DNA strands.
My wife and I have other theories about Isaiah's condition that relate to his many surgeries, infections and subsequent hospital stays, but for us the 'why' doesn't really matter - it's the 'now' that means so much.
'Now' includes love, patience and understanding and knowing that there is a community of friends and family, teachers and specialists who are willing to work with Isaiah and provide structure, instruction and guidance so he will be the best Isaiah that God created him to be.
As members of the military community, we have access to services through Department of Defense Dependent Schools-Europe and programs through the local Exceptional Family Member Program - resources we wouldn't readily have in the states.
Because of the EFMP we know we're not alone. With more than 930 registered exceptional family members (only includes military families) in the Heidelberg area alone, support is never far away. And with the range of family members, children and adults alike, with a physical, emotional, developmental or educational disability requiring specialized services, there is usually someone who has faced the same struggles.
In the meantime, I look forward to taking long meandering walks with my son through the nearest open field looking for a stream to play in.