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Fall 1999 Table of Contents
Versión Español de este artículo (Spanish Version)

By Edgenie Lindquist, Jonathan's Mom, Austin, Texas

Editor's note: Children with visual impairments or deafblindness are not immune from having other disabilities to deal with in their lives. Recently I have had a number of families of children with visual impairment or deafblindness contact me about Attention Deficit Hyperactivity Disorder (ADHD) or Attention Deficit Disorder (ADD). The next two articles helped me understand some of the issues children with this type of disorder face and also what their families face.

These words from one of my son's nighttime visits with God early this year will stay with me forever. They continue to fill me with mixed emotions - mixed in the sense that I'm grateful that at the age of seven Jonathan is very much aware that his energy sometimes needs "handling", but also saddened that this particular day had been very hard for him. Being a typical mom, days that overwhelm Jonathan are usually the pits for me, too. After all, moms are supposed to be able to kiss bad days away, aren't we?

This particular night I hugged Jonathan and we talked about how he was feeling. We were able to explore what his energy meant to him. We came to the place where we agreed that he indeed has a lot of energy but that energy is also a good thing. We talked about how energy can be channeled to help him with his innate gifts of creativity and compassion. Hard work would be required - more than most people - but he had it in him to do it. After all, I told him, he comes from a family of hard workers.

Jonathan and I have had other such conversations, but this one felt different - perhaps because he was at a different developmental stage where we could talk about his feelings more in depth, but more than likely it was because I now fully believe what we were talking about - with all my heart and mind. I saw my child differently that night. I saw a child with gifts that with some focus and hard work will lead him to a successful life. My shattered dream child had finally been put back together into a "real dream" - complete, whole and positive.

I couldn't have had this conversation with my son as little as three years ago. As the old commercial says, I've come a long way.... When I first learned that Jonathan had ADHD, he was about to turn four and I was recently divorced. Needless to say, our lives were a tad bit tumultuous. The diagnosis was not easy because Jonathan was so young and because there were so many factors intermingled (the effects of a divorce, Jonathan having an auditory processing problem, etc.). I was determined to prevent a misdiagnosis. However, Jonathan's ADHD was severe enough that ultimately it became clear that although there were other issues, he needed immediate help. Because a support system for families dealing with ADHD wasn't readily available, I tapped into the system I knew best - the field (rehabilitation and visual impairments) I had been working in for over ten years. When I talked with people about our experiences with the multiple assessments, therapies, and entering into special education for speech services, most of the people were quick to make statements like: "You are so fortunate that you have your professional background to guide you through this process."

Although their statement had some truth to it, my professional background was really a double-edged sword at the onset of my journey as a parent of a child with ADHD. Yes, I had some knowledge of how to make the system work, but this time it was my child - it was often tremendously difficult to put head knowledge to work about the person I cared most about in this world. I found that while professionals openly accepted me as a member of my son's team, they often would forget to explain basic information that I was unable to remember because of my new role as a parent participant. I was overly hard on myself for making mistakes and feeling the full impact of the grief. After all, I went in knowing what it was all about!

As a mother, I spent my share of time wishing my son could be spared the challenges he faces. I spent so much time looking at the early challenges that I was in danger of overlooking his splendid gifts and talents. Jonathan and I had to break out of that mold. This was a wonderful kid with oodles of potential - I knew it and it was time to get him around other people that knew it. We both needed the boost. We both needed a circle of positive support. It took hearing from another parent in my profession to ease up on myself. She wisely said that just because I was "in the business" didn't mean that I didn't get the privilege of going through everything that parents go through when they learn their child has a disability. That was my first "ah-ha experience" of making a connection between what I knew in my head (my background) and what I needed to feel in my heart (I am first and foremost Jonathan's mom!).

When Jonathan's ADHD was diagnosed it was hard not to fall into step with the world's faulty message that people who have disabilities are somehow "broken". Trust me, the world is full of role models out there if you want to concentrate on the negative. I've always been an advocate of strength-based services but was finding it very hard to infuse this principle into services for my son. It seemed that at every turn a professional would give me information that highlighted another deficit, another negative. I found it very hard to operate with all this information and to deal with society's negative (and often incorrect) view of children who have ADHD. I wanted to concentrate on Jonathan's strengths!

When Jonathan and I were leaving a speech therapy session one day, the therapist, whom I had grown to trust immensely, told me that we needed to have Jonathan evaluated by an OT because she saw several problems related to motor planning and sensory integration. The now familiar "kick in the stomach" feeling hit me so hard that I had to lean against a wall for support. Although I knew she was right (I was observing the same things), it was a major blow because I viewed his athletic ability as one of his strengths. Slowly but surely I began to realize that Jonathan can have a strength and a challenge in the same area. I began to learn how much strength-based services helped me not give in to the urge to give up but instead to accept the emotions I was feeling as healthy and to move on. I began to realize that how I reacted to what was happening with my child had a big influence on how others perceived him. It was then that I began to talk openly about Jonathan having ADHD as well as the other "dance partners" associated with the condition.

I found that talking frankly about the challenges, and acknowledging what those challenges present to the people around him, put people in a better frame of mind. Yes, my child does have considerable "high energy". If the environment is full of stimuli, he can become a living ping pong ball. Bringing this out and talking about it helped everyone realize that they were supported and that we were not making excuses for Jonathan's behavior. With that foundation in place, seeing his strengths seemed to come almost naturally. It was easier to build a support system for Jonathan that would help him develop skills needed to channel his challenges into strengths.

Building a support system of family, friends, doctors, teachers, childcare providers, therapist, and church community that has a positive attitude toward Jonathan has been an imperfect process. In our search we still keep coming across people who operate by focusing on what is wrong or broken or unsuccessful. Every time we get into this situation, it has disastrous results.

Sometimes I've been quick to see a potential disaster, like the time I told a doctor to never tell any mother - including me - that she was "in denial" simply because she was asking what options her child has. We didn't go back.

Sometimes I've been too slow in responding and Jonathan has paid dearly for it - like the time that I learned that a childcare facility was locking him in what they called the "bad boy" room when he was having difficulty with his emotions. I found out about the room one day when Jonathan said that he was a bad boy and no one should ever love him. He was just three years old! We left the facility that day.

Our greatest successes have been with those wonderful people who are gifted in focusing on the positive. Most of these people unknowingly served as my mentors during our years of breaking out of the mold. For example, the speech therapist from Jonathan's school for the past two years shared with us such jewels as "Our kids just need more time on this earth to get it all right." This helped everyone keep the perspective that Jonathan may be developmentally behind in an area but he will catch up with the right support and in his own time. To help Jonathan begin the process of learning that taking medication is only one of the tools he needs to have self-control, she said, "The control is also within you, not just in the pill."

We've been blessed with the world's best teachers, therapists, family, and friends. Each one has done a beautiful job of helping Jonathan shape a positive self-image and learn strategies for dealing with his ADHD. They have all held up high expectations for him and cheered him on as he met them with glee. (Don't doubt for a minute that he didn't work hard for his successes - he has given it his all to achieve goals.) They've held mirrors up to both of us so that we could see his gifts: his artistic talent, wonderful sense of humor, and compassionate heart. I wish I could find the words to express how much their statements of his strengths helped me move beyond focusing on what wasn't right and to transition into a frame of mind where I'm confident that he will be all right.

James Ochoa summarizes it perfectly in his article when he says, "Although parenting ADHD children is a complicated process, the rewards are numerous." Jonathan and I have many years ahead of us as we grow through this process. Through it all, I'm sure that he will continue teaching me how to live life to its fullest. We will cherish our strong circle of support as helps keep us focused on our goals, reminds us to take care of ourselves, and celebrates the beauty of life's many special moments when Jonathan shines.

Editor's note: I asked Edgenie for a list of books that other parents might like to know about. Here are her favorite and most recommended titles:

Books for Parents

Driven to Distraction by Edward M. Hallowell, M.D. and John J. Retey, M.D.; Simon and Schuster.

Answers to Distraction by Edward M. Hallowell, M.D. and John J.Retey, M.D.; Bantam Books.

Attention Deficit Disorder: a different perception by Thom Hartmann; Underwood Books (the "hunter in a farmer's world" book).

Taking Charge of ADHD by Russell A. Barkey, Ph D.; Guilford Press.

Survival Strategies for Parenting Your ADD Child: dealing with obsessions, compulsions, depression, explosive behavior, and rage by George T. Lynn, M.A., C.M.H.C.; Underwood Books, Inc.

Great Children's Books

Shelley the Hyperactive Turtle by Debra Moss; Woodbine House Press (ages 3-7).

Sometimes I Drive My Mom Crazy but I Know She's Crazy About Me by Lawrence R. Shapiro, Ph. D.; CTAPS (ages 6-12).

Editor's note: Parents and professionals may also want to contact CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder), 8181 Professional Place, Suite 201, Landover, MD 20785; Phone (800) 233-4050, or (301) 306-7070; Fax (301) 306-7090. CHADD held it's Eleventh Annual Conference on Attention Deficit/Hyperactivity Disorder in Washington, D.C., October 7 - 9, 1999. To find out about future conferences and other information, contact them or visit their website at <www.chadd.org>.