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Winter 2006 Table of Contents
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Keeping It All Together: Lessons Learned from the 2005 NTAC and NFADB Annual Conference

By Lisa Wick, proud wife to Jay and mother to Jason 9 and Julie 3,
Texas Deafblind Family Leadership Graduate, Burkburnett, TX

Abstract: One parent shares what she learned at the Annual NTAC/NFADB Family Conference so that other families can benefit from knowing strategies for managing life when you have a child with deafblindness. While this training was specifically designed for family members of people with deafblindness, the information is helpful to any family when they have a loved one with a disability.

Key Words: family, blind, visually impaired, deafblind, strategies for managing family life, self-help

Editor's Note: Lisa wrote this article shortly after her husband, Jay, was deployed to Iraq. On behalf of the deafblind community, the See/Hear team would like to extend our thanks to Jay for proudly serving our country. We eagerly await his safe return to his beloved family.

I had the privilege of attending the 2005 NTAC and NFADB Annual Family Conference, which was held in Salt Lake City, Utah, August 25-27, 2005. For those of you who are not familiar with NTAC and NFADB, they are the National Technical Assistance Consortium for Children and Young Adults who are Deafblind and the National Family Association for Deaf-Blind. The conference theme was Keeping It All Together: Strategies for managing family life when a member is deafblind. Now there is a title I could immediately relate to! From the onset of our daughter's medical problems, my husband and I have searched for the solution of how to "keep it all together."

So I was thrilled to get the opportunity to attend this conference with 150 other parents of deafblind children from across the United States (even three families from Puerto Rico). The hardest part, as most any parent can relate to, was leaving the house. Weeks of preparation and list-making went into actually getting out the door. I spent my two-hour layover at the airport calling the durable medical equipment (DME) company ordering supplies to be sure we didn't run out of anything. I also filled my time running through Julie's schedule with my mother and husband half a dozen times, even though I know that they know her schedule just as well as I do. I even contemplated not sending her to school or therapies while I was out of town. I felt so guilty having anyone else try to juggle her schedule; it's just second nature to me. No surprise Dad and Nana managed it all like professionals. Everything ran perfectly well without me the four days I was gone.

The keynote speaker was Marlyn Minkin, a professional counselor in Seattle, Washington who works with several families with deafblind children. She was wonderfully in tune to this group of parents. Our first session, which was titled "We Are Not Alone", described how much parents of a deafblind child have in common. We share many of the same concerns, hopes, fears, battles and celebrations for our children and our families. Marlyn then showed us how birth order (oldest child, middle child, and youngest child) affects how we, as adults, deal with situations and also how birth order affects how our children interact and view their siblings.

The most insightful activity was when Marlyn had each of us fill out the Myers-Briggs Personality Type Indicator (short version), a personality profile that sorts everyone into temperament types. As we saw where we fell into each of the four categories, we were able to see our strengths and how we function best. Being aware of this allows us to take control of a situation. For example, based on my profile I don't like confrontation, and need to be able to think a situation out before I take action. That sure hit the nail on the head! What I learned is that if I am presented with a challenging situation, I should take some time to think it over before coming to a decision. Marlyn stressed that there are no right or wrong personality types, but that it is important to know your own strengths and weaknesses so that you can make them work for you and your child.

One topic that parents find hardest to hear is that it is important to take care of themselves. Most parents find that topic low on their priority list, and then when you add a special needs child into the mix, self-care usually doesn't make the list. When Marlyn polled the audience of parents, the number one reason we don't do more for ourselves was guilt. We feel guilty doing for ourselves when there are so many other things we believe we could be doing. As she stressed over and over to us, you aren't going to be any good to your family if you are not good to yourself.

The second most popular reason was "there just isn't enough time." One solution was "learn to delegate." Another solution was "letting go." Even though your husband or family member can't do for your child as well as you can, like you do, or as timely as you can yourself, you have to "let go" and let them do the best that they can do. Marlyn showed many of us how we add to our own stress levels by thinking we are the "only ones" who can or will do the care for our children. Others can be taught, with a little bit of love and patience.

One of the hardest things for us, as parents of special needs children, is asking for help. An analogy she used was that most of us really mean it when we offer to help a friend or family member and that we sincerely hope the person accepts our offer. Why is it any different when the situation is reversed? Most people offer to help because they truly want to help. So let them pick your kids up from school, mow your lawn, or cook you a meal and then use that generous gift of time to take care of yourself!

Marlyn held strong that there is always time for you. Skip doing the dishes late at night and read that book or take that bath instead. The dishes will be there tomorrow and you'll have to wash dishes tomorrow anyway. One mother said she splurged on herself by hiring a maid to come into her home once a week. It was interesting to hear what things we think are selfish: reading a book, watching a movie, sewing, going to the grocery store alone, going out to eat, time alone with our spouses. These are not unreasonable requests, yet we deny ourselves day in and day out.

Several parents stepped forward to say that they feel like they are always angry, or feel like they have to be in "attack mode" all of the time. They feel all alone or overwhelmed. These feelings really wear on your mind, body, and spirit. Our children can usually pick up on these feelings, and these are not feelings we want to give to them.

Marlyn talked to us about not being afraid or ashamed to seek counseling for ourselves, our spouses or our children (those with and without the special needs). Several couples stepped forward to say that counseling saved their marriages, because they were not "keeping it together"; while several others wished they had sought counseling before their marriages ended in divorce. Many mothers stood to say that prescription medications helped them "keep it together". It doesn't matter where your family gets their help from, just that you get the help that you need.

Marlyn also showed us how easy it is to form a parent group. She organized a parent panel by asking six parents from the audience to come up on stage. She threw a couple of questions at us from time to time and it went from there. I think the six of us could have gone on for days. It was so natural for us to just talk about our families. It was a great success. Marlyn challenged parents who said that they "have no one to talk to" to find someone, even if it means starting your own parent group. I've stayed in touch with a parent from Indiana who went home and did just that.

One thing I am always reminded of when I meet other parents is that "I am really lucky; we don't have it bad, because things could be so much worse." There was a mother from South Dakota who was a hero to all of the other parents in attendance. She was the mother of eight children, and her special needs children were her four-year-old quadruplets. Wow, can you imagine having four toddlers at one time. Even without the special needs figured in, that is quite a handful.

I urge every parent to find a support system. There is NFADB, DBMAT (Deaf-Blind Multihandicapped Association of Texas), TAPVI (Texas Association of Parent for Children with Visual Impairments), and numerous other groups that you can link up to. It is a good feeling to know that you are not alone in your journey, and a great opportunity to share information. The best ideas and tips I get come from other parents. I am a firm believer in the old adage "there's no need to reinvent the wheel." If you are looking to form your own group, look to local churches, hospitals, schools, or other nonprofit organizations for help. You can look for a counselor under the yellow pages, or your family doctor can refer you to one. Most churches also offer counseling.

The most important thing I brought home from this conference is that I need help in "Keeping It All Together" and the only shame in needing help, is not asking for it.

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