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Spring 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Dick Newton, Grandparent, San Antonio, TX

Abstract: A grandfather shares his family's journey in adopting their grandson who is deafblind.

Keywords: Family Wisdom, parenting grandchildren, deafblindness, community support

One of the many things my wife, Phyllis, and I planned to do when we retired was to buy an RV and visit every major league baseball stadium in the country. That came to a halt.

Our daughter, Julianne, who was a brittle diabetic, was in and out of hospitals with health issues for many years. When she became pregnant, she began having complications. Our grandson, Nate, was born at 24 weeks and weighted one pound, six ounces. Nate was in a huge hurry to experience his new world. He was required to stay in NICU for five and half months. It was later determined that Nate was deaf, blind in one eye, and developmentally delayed. After our daughter passed away due to complications from diabetes in 2002, we took the necessary legal action which resulted in first temporary custody, then permanent custody, and finally an adoption on July 14, 2004. Life changed.

Phyllis and I love our grandson dearly and we just know he loves us too. One of the first things we did was attend to his medical needs. It's always interesting to walk into the pediatric clinic with Nate for an appointment and see the looks Phyllis and I get. Most of the parents in the waiting room are young enough to be our children. Whenever the nurse calls us in for weights and measures she usually says, Is Nate your grandson or son? We just respond, Yes. Nate has had a tonsillectomy, hernia surgery, MRI's, and was screened for a Cochlear implant. Unfortunately, he does not have the eighth nerve necessary to proceed with the implant.

Once we felt his health needs were being satisfied, we turned our attention to communication. Nate knew very few sign words and we were in the same boat. Phyllis and I took a sign course, bought signing for dummies (appropriately titled), and obtained some VCR tapes depicting life with the Bravo family. He also began speech/occupational/physical therapy. Our plan was to learn at home and Nate would learn at school. We REALLY didn't want to travel anyway! Oh, by the way, how do you spell ARD?

What an experience! Age and wisdom are not interchangeable. I can say that first hand. I didn't realize schools hired teachers and administrators who look so young. Anyway, the process is quite preformatted until you get to the IEP part. Then the clouds start rolling in. How do you come up with an IEP for a child who has a difficult time communicating?

It was through TSBVI Outreach that we learned about other supports that have been a blessing. We have learned so much through the Deafblind Multihandicapped Association of Texas (DBMAT). By attending the annual DBMAT conferences, the information we have obtained has been so enlightening. For example, at one of the conferences we were encouraged to get Nate on the Medicaid Waiver lists, and this has proven to be most beneficial. Nate really enjoys the activities for the children. The support and networking with other parents of deafblind children has been priceless. Nate is in the DARS Division for Blind Services (DBS) children's program and MDCP waiver, both of which have helped financially and with respite care opportunities.

Nate was less fortunate, however, when it came to schooling. That was until last year. It was through TSBVI Outreach and excellent coordination from Nate's school that we were able to apply and be accepted at TSBVI. Nate started last August and has shown quite an improvement in his communication skills. We are trying to keep up with Nate's signing. He doesn't initiate as much as he should, but you start signing and he's there with you. It's amazing what a good education can do! He does get frustrated with us sometimes because our limited communication skills.

Nate is a real sport when traveling. He likes to fly and run through airports. Road trips are now more frequent with two hour bus rides each Friday and Sunday to and from school. Also backpacking has taken on a new meaning. They are now filled with pull-ups, pediasure, carnation instant breakfast, and spare clothes. Nate went from being with us 24/7 to being a real semi-sightseer.

It took us almost two years before we were comfortable enough to leave Nate with a sitter. That meant dinner and a movie was merely a term and not reality. Finally we were able to have Nate's intervener from public school sit with him. Since attending TSBVI, date night has returned once a week or so.

Throughout Nate's young and turmoil-filled life, he has been a real trooper. He has some behavioral issues which have interfered with his education, but are being controlled with medication and lots of patience. Nate loves to play with his shirts and also likes to rip them at times when things aren't going his way. Thrift shops are now our Gymboree stores.

Life certainly has changed for Phyllis and me, but we are thankful that we have Nate and never give it a second thought about raising our grandson/son. While he has been a work in progress, he has been the thunder and lightening of our life. Our retirement plans have been put on hold and we will just have to visit those ball parks using our walkers. It has been and will continue to be the experience of a lifetime.