Cheryl, Eric & Dan Dinnell
A Father's Reflection
I am the proud father of 3 boys, the oldest diagnosed with mild ADD, one who suffered from “middle child syndrome”, and our youngest diagnosed with a very rare genetic disorder and needing lots of intervention… surgeries on his eyes, ears, hips, ankles, testicles. PT, OT, speech, vision, orientation & mobility, & assistive technology. He wears glasses, hearing aids, has very fragile skin, a heart murmur, and has been skinny since day one. All three of my sons have taught me a great deal about life, how difficult it is to provide for their every need, and how critical it is early on, to have support in the community.
When our youngest son Eric was born a month early, on Thanksgiving morning, into our family, our world changed. With no indications of any problems, he was a shock to everyone including our family pediatrician. The doctors at the hospital were not sure of anything other than “something is wrong.” At birth, after the C-section, the nurse who carried him off said he looked “unusual,” but had all his toes and fingers. They kept him in the NICU (Neonatal Intensive Care Unit) for the next two weeks, which included surgery to his eye to remove a cyst. We rotated our schedules and lived there for two weeks as well. At the end of the two-weeks they said, “There's nothing more we can do for you. Take him home.” The doctors did not expect a long life span and said “Your son might be severely disabled and there is a high likelihood of severe mental retardation.”
So we brought Eric home at 3lbs. 6 ounces, and called the Early Intervention Program. They filled a badly needed role by providing direction and support. Specialists assessed his strengths and weaknesses, and mapped his progress. They showed us how to work with him. It wasn’t always easy. There were many specialists involved, and many appointments to keep. There were times when little or no progress was made, and times when new problems were discovered. We were encouraged by caring service providers and other parents who had similar experiences to keep trying, and not give up.
We became involved in a parent-to-parent program that directed us to other resources for information and support. That has been one of the greatest blessings in our life, networking with other parents. I have seen how crucial supports and services are to many families and how they have come about as a result of good advocacy and education. If the need for resources and support is filled then it will continue to produce positive community, individual and family outcomes.
Almost a year after he was born we were able to get a diagnosis. Eric was born with DeBarsy Syndrome, a very rare genetic disorder. There were only 15 known cases in the world and little information. Basically, he has multiple disabilities, some quite severe, and will most likely need ongoing supports and supervision for the rest of his life — "endless love" so to speak.
Though we were busy with appointments, doctors, therapists, several operations, filling out paperwork and paying bills, we learned how important it is for parents to be an active partner in programs that affect our families or children. With every gain we saw a brighter future -- maybe not perfect, but not so imperfect as we first believed.
He's never taken beautiful pictures, but everyone who knows him thinks he's a great kid. He's happy, healthy (most of the time), and wants to do things for himself. His biggest challenge has been communication (he's nonverbal and hearing impaired); then next is probably the use of his hands (he's creative in doing things but the limits of those fingers are evidenced everyday - can't tie his own shoes, for example.) After that, his vision is the next challenge - he has no depth perception and is extremely nearsighted, legally blind. Amazingly, he can see little details that we overlook.
Eric is constantly surprising everyone with his tenacity and desire to learn. Eric loves school, church, music (Shania Twain), video games (Nintendo Game cube-James Bond), movies (action- Air Force One, Top Gun, Jurassic Park), Home Improvement and Jeopardy, camping, and going places (while listening to books on tape!). He uses the computer to do basic school work, and uses special equipment to fix some of his meals. He listens carefully to conversations and giggles and laughs at jokes. He understands much more than he can express. We see that he does try to figure it all out, that he actually has gained skills and knowledge.
Have I ever contemplated "the rest of Eric’s life?" No, not in the beginning. Too many things to worry about and cope with. It just seemed to be overwhelming at times. What it takes to take care of a kid with special needs! I had a full-time job to escape to. My wife carried out most of these new and sometimes difficult duties of raising a child with special health care needs. After he turned three the school district felt it would be in his best interest to transition to a “special” school where he would get extra attention, structured one-on-one quality help, and safe. My wife said, “No.” And that sort of caught them off guard. They allowed us to put our son into a regular education kindergarten room with the assistance of an aide. He has never been able to stay with his classmates academically, but he's doing great in his own way. He loves school and most of the kids there, they love him.
As I made more time available for my family, I gradually became more understanding of and involved in the many unique aspects of raising a child with special health care needs. Our responsibility and commitment to Eric has grown. We are continually seeking out new ways to have Eric involved in the community. My wife delved into it full force, and with patience taught me the value of "looking forward" and to have a vision of what I would like to see for my son. Maybe surprisingly, his future does not look as grim to me as it did in the beginning.
Eric is 21 years old now and still a senior at his neighborhood high school and though he needs an aide to get things done, he loves it. Yes, our world has changed, and as a father I often find it difficult to express my feelings. But there is one little boy in my life where I can feel my emotions constantly being pulled out. That is with my youngest son. He is doing far more than anyone expected, and has helped show me how to do more for others than I had ever dreamed of.
~ Dan Dinnell