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:
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.
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.
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.
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?
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.
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.
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:
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.