Parenting an Older Child Who is Medically Complex

by Karla Cunningham

Few parenting books prepare any parent whose child is born with complex medical needs. In addition to the usual steep parental learning curve, parents of children who are complex often find themselves having to become patient advocates, medical specialists, and highly-skilled planners to get their kids to survive, much less thrive.

Oftentimes, at some stage, things settle into a pattern. It may take months or years, and be based on hard-won lessons and small victories. Things are better, even if only by a bit. You know your child’s specialists, the OT and PT have become a second family, you may—by some miracle—even have a date night with your spouse.

You suffer through and overcome the torture involved in leaving Early Intervention for the school system and its IEPs and 504s. You throw around acronyms without a second thought. You’ve found your people via Facebook and local support groups. There are play dates and even sensory-friendly kid movies at a local theater that “gets it.” Regardless of your child’s diagnosis, things hum along. Imperfect, but better. Time seems to fly by. Your baby becomes a toddler, then a preschooler, and then, as if transformed, your little angel is in elementary school. Sure, there are issues, but there are also supports. There are special needs camps and activities, all for children under twelve.

Teenage Years

Suddenly your child hits thirteen and is officially a teenaged middle-schooler. There are hormones and hair and periods. There are moods and there is a new administration to work with (and around). When you visit the specialists, there’s a subtle but perceptible shift. Your child is a pre-teen (and then a “real” teen). He or she is no longer cute (even to you, sometimes). Specialists aren’t as warm as they used to be. Medical testing doesn’t automatically draw the support of child life specialists. Your child is increasingly expected to deal with a certain level of discomfort and a certain level of pain. If your child is an adolescent female, there’s more suspicion that things are “in her head” or it’s “hormonal.”

Supports begin to fall away. There are fewer classes, camps, and activities to join in with kids who are like yours. If your child has a physical disability, after school activities where sports, drama, and outdoor adventures abound may be out of reach. He can’t keep up with his peers in gym class. Girls laugh when your daughter doesn’t seem to register sarcasm or they don’t appreciate the fabulous pink and black AFOs she just designed in her recent fitting. At a time when social status, social capital, and peer relationships are everything and based on conformity, your unique child is the square peg. Friends fall away. Worse, friends may take the opportunity to gain social capital at your child’s expense.

Loneliness sets in. As a parent, you find yourself desperately Googling resources in your neck of the woods. The pickings are few to non-existent. Your child is “too old” or doesn’t carry the right diagnosis; your child is too impaired or not impaired enough. For children on the spectrum who are “twice exceptional,” gifted but also impaired, supports don’t address the weaknesses or strengths. Your child spends too much time alone or online. Friendships are precious and require careful tending. Even some friends wind up falling away as your child has difficulty keeping up.

High School and Beyond

Suddenly your middle-schooler is in high school! (When did this happen?!) The school environment enlarges exponentially. You need to navigate a new administration. You need to advocate (again!) and fight (again!) but you are also now expected to “let go.” There are four years left and then your child is a literal adult. State laws that began limiting parental access to medical records as early as age twelve (thanks, California!) become both state and federal at age eighteen. HIPAA is just the tip of the iceberg. FERPA, or the Family Educational Rights and Privacy Act, makes it exponentially more difficult to obtain information about a student over the age of eighteen, and there are both state and federal variants. Lucky you!

Then there’s the social side. Remember when you attended that playgroup back in the day and it was clear your child was different than the other kids? Ditto the school bus stop? That’s nothing compared with high school. Every parent worries whether his or her child will be able to make it in the world. (Some also worry that their child will never leave.) For parents with kids who are medically complex, however, this concern is real, justified, and likely to produce more than a few sleepless nights. This isn’t just about the practical side of growing up. It’s also about the ability to develop relationships.

When queried about their greatest worries for their children, whether their child’s needs involved physical or learning disabilities (or both), parents’ responses were consistent. They worry about whether their child will be happy, able to live independently, and be able to have the careers they desire. Rigid professional requirements in many fields are not inclusive, regardless of school performance. At the college level, students must advocate for themselves for the first time, usually every semester, to obtain the services they’re entitled to. However, even parents don’t always know what those services are, so it’s reasonable to worry about their children’s ability to navigate this system.

Adulthood

Whether it’s at age twenty-one, when the bottom drops out of the support network, or age twenty-six when access to healthcare on the parents’ plan ends in many families, there is a definitive date when the door closes and a child with special needs is no longer, officially, a child. There is the move to adult specialists (except for certain conditions which allow adult and pediatric patients to see the same specialist). Peers are in college, graduate school, marrying, renting their first apartments, traveling—doing all of the things we expect to see young people doing.

In too many instances, the child who is medically complex has fewer options. Parents—and young people—have to work very hard to keep this from happening. Not every family has the resources to expand horizons for young people, regardless of whether they are high functioning or not. There are definite differences families face depending upon their child’s condition. Nevertheless, parents and young people face the reality that there is an extra “something” to navigate.

For those of you reading who are new to all of this, don’t despair! It’s possible to make things better. Early Intervention was only created in 1986! Parents, communities, and doctors are still on a learning curve. Early childhood has been addressed, not perfectly, but pretty well. Now it’s time to relish those successes.

We have children who have opportunities that were previously unimaginable for many diagnoses. That doesn’t make things easier, however. There’s more work to do. We need to consider how things change for the middle school tween, the high school teen, and the college-aged young adult. Our early childhood advocacy and intense hands-on care giving must transform. As always, it will resemble what “normal” parents have to do. It’s also going to require more from us, and from our growing children.

We’ve been there. We’ve done that. We can do it again. And we will, this time with our child right out front with us.

Author: Karla Cunningham • Date: 2/20/2018

About the Author

Karla J. Cunningham is a mom and writer living in Boston.

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