More and more these days, I’m referred to as a “veteran parent.” We who have navigated the twists and turns of guiding a child with special needs into adulthood often feel justified in believing that we have learned the way. However, just when we think we have the path all figured out, the road changes, the directions appear in a new language, and it feels like we’ve entered a foreign country. This, as veteran parents know, is one of those periods of transition when it seems like we have to start all over again and learn new rules, new faces, and new ways to work with new agencies and programs.

And then, pretty soon, we start thinking we’re veterans again. 

As a mom whose son is moving into the adult world, I am once again traveling across unfamiliar terrain, and once again feeling like I am the new kid on the block. Adulthood for an individual with a disability involves working with a multiplicity of agencies and systems, each with its own sphere of responsibility, set of rules, and practical realities.  We were not given a road map to guide us when our son was born, and there are no road maps now. As parents, though, when we lace up our boots and move forward, the strategies for surviving—and thriving—are similar, regardless of where we are as parents on this life journey with a child with a disability. Over the past 22 years, I have developed a survival kit that contains some pretty useful tricks and proven tools that are worth sharing. Here’s what they are:

Parent-to-Parent Support

When our son Robby was born, we were one of the lucky sets of parents who had a pediatrician who understood then what we all know now: the value of parent-to-parent support. Before I left the hospital, this doctor had introduced us to another family that had a six-year-old child who was born with Down’s syndrome. Like many other parents before and after, I didn’t know what questions to ask. But I did know that those parents looked happy and sane. From their visit, I gathered the strength to know that, whatever this new baby brought our way, our family would be just fine; or at least I gained the confidence that we would find a way.
Parent-directed Family Resource Centers, Parent Training and Information Centers, and Family Empowerment Centers were all created out of the fundamental belief that there is power in parents supporting and guiding other parents through the emotions, experiences, and decisions involved in raising a child with special needs. Experienced parents, grandparents, siblings, and extended family members have a great deal of valuable insight, understanding, and information to share. Every region in California offers parent-directed centers that provide a multitude of services to ensure that no family with a child with a disability or a developmental delay needs to go without support and information.

Supporting Your Child’s Uniqueness

As parents, we are most in need of experienced support when our child is approaching what has been identified as a transition—when a child is moving from hospital to home, from Early Start to preschool, from elementary to middle to high school, or from post-secondary school into adult life. As an “old kid on the block” who is becoming the new kid again, I am reminded of how overwhelming the flow of information can be in these times of transition. When our son was first diagnosed, I was intimidated and exhausted by the knowledge I tried to acquire and the stories of the struggles I heard in the first parent group I joined. Ironically, I have spent the last 18 years as a parent-professional providing direct support to families (and probably often overwhelming them with information and new worries).
However, all of my experience in both receiving and giving support has led me to one simple conclusion: Every child and every family is unique. While we share similar feelings, concerns, experiences, and dreams, the path that will help us reach those goals that are most important to our child and family must be our own. As you create a map for your journey, be sure to draw upon all of the sources of support you can find. But never lose sight of the need to filter the information and guidance down to the essential resources that are best suited to you and your family.

Knowing What You Want

One of the biggest lessons for me along this path of parenting a child with a disability came when my son was in his early elementary years. I intensely wanted an inclusive experience for him at school and was attending an IEP meeting. At one point, the principal turned to me and asked, “What is it that you want?” Put on the spot, I was unprepared to give an answer. Even though I had a fairly good idea of what I wanted Robby’s day to look like, I was not ready to summarize all of our goals and dreams for him in a simple statement.
At that meeting I learned that I needed to have a prepared, clear statement of what I wanted for my son, even if I was not always sure how I was going to get it. As a result of this awkward experience, I have made it a point to step back from the avalanche of information and the changing rules and players at every point of transition and look for—and find—some clarity. This has made it possible for me to answer the question of what I want for my child, even in the most stressful moments. Some years the journey was bumpier than others, and the vision more complicated. But it was extremely helpful to always have—and hold onto—a clear idea of where I wanted to go.

Listening, Learning, Communicating

When Robby was a baby, he let us know when he was hungry, happy, tired, wet, or angry. He used few words then, and continues to use few words today. But he tells us what he needs just the same. We learned early that when he was communicating something to us, we needed to be paying attention. Thankfully, in more than one life-threatening situation, we were good listeners.
Sometimes it took some research to determine what was making him unhappy or anxious, enthusiastic or sad, and the research would take many forms: talking with the members of other families, consulting with professionals, reading the studies, or just sitting reflectively with him. Often finding a solution came down to trial and error, because we just weren’t getting the message! Sometimes there are no direct paths to finding answers—and every once in a while you just have to forge new ones. As children get older, their ability to communicate increases—sometimes because their skills improve, but just as often because we as parents become more skillful in researching and determining exactly
what our child is communicating.
Regardless of our children’s age or ability to communicate, our relationship with them requires that we listen—to behavior as well as words. What is the meaning behind the choices they are making?

Growing Up

As they turn from adolescents into adults, we must pay attention to the wants and needs of our children, even more than we did when they were babies. They may be choosing a different road from the one we have been planning for them. If we want them to be happy as adults, we are often forced to let go of our own plans and help them find and realize their own.

Friends, Educators, and Experts

One foggy Tuesday morning I recall asking my older son Shaun to empty the dishwasher. He complained that Robby should do it because he didn’t have a fair share of the chores. I replied that Robby didn’t know how to empty the dishwasher. Shaun responded, “He does too. I make him do it all the time when you’re not here.”
All parents have the experience of feeling that someone—a professional or an educator or even an older brother—is doing their child a disservice by setting unreasonable expectations, whether too low or too high. For Robby, our son with Down’s syndrome, the expectation level was often too low. And for Shaun, who has learning disabilities, the level was frequently too high. This is a very thin line to walk: establishing high expectations, but not demanding the impossible. As in so many other areas of parenting, this one has no road map. However, I know two things to be true: The most important expectations are the ones that the child and the parents place upon themselves; and as I look back on my periods of highest anxiety (usually transition related), they ultimately proved to be periods of the greatest growth for my sons.

Back to the Basics

Transitioning into new service systems means that the flow of new and confusing information increases, and the choices and decisions start to multiply. But regardless of the degree of stress or anxiety you’re experiencing as a result of your child’s disability, and irrespective of where she is along the path to adulthood, several very concrete, practical strategies will serve you well:

• Access information from a variety of sources, including other parents who have been down this road.
• Use online technology, but don’t overwhelm yourself or your child.
• Organize, be it in a file or on a disc.
• Keep personal information readily available for easy access.
• File contact information of those agencies you are communicating with, and keep notes on whom you talked with, who said what, and what timelines and actions or follow-up plans have been agreed upon.
• Put requests in writing and keep a paper trail.
• Call or visit your local parent-directed resource center.
  

Ask, Ask, Ask!

Maybe the most important practical advice is to always ask questions. (Remember, there really are no “dumb” ones.) The jargon and acronyms related to disability can be overwhelming if you don’t. If meetings or conversations become overwhelming, it is okay to say, “Please stop. I need a break!” Then take time to think about the discussion at hand, gather more information, and contact others who may help. You will be gaining knowledge and insight by doing this. And, by speaking up and asking when something is not clear, you will also be helping to set a higher standard of clarity for other families.

A friend will periodically remind me that our children with special needs did not come with an operator’s manual. Unfortunately, no child comes with one. Every new family will pioneer a new path built upon older trails carved out by earlier generations. And even though transitions may turn the old kids on the block into new kids, we will all be old kids again very soon. We have developed our survival kits, found good advisors and sources, and maintained a clear sense of our goal. If we have learned how to do one thing well, it is how to continually redraw our map as we better understand what our children want—and where THEY want to go.