My husband and I adopted our daughter when she was nine years old. She has a long list of mental health diagnoses. We quickly discovered that parenting a child with special needs results in the whole family having a special set of needs. As I’ve interacted with other parents of children with special needs, I’ve noticed that there are some factors that most of us have in common. These characteristics are typically present regardless of the child’s diagnosis.
We’re tired. Really, really tired. Exhausted, actually. This isn’t an occasional thing for us. We don’t miss out on a full night of sleep once in a while. It’s all of the time. My daughter suffers with insomnia and nocturnal panic attacks. It is not uncommon for her to be awake for most of the night. Even when we do get enough sleep, we’re still run down from all the energy it takes to manage our child’s condition. Our schedules are jam packed with various doctor, therapy and psychiatric appointments, IEP meetings and trips to the pharmacy. On top of it all, we still have to go to work and keep up with general household duties.
Our brains are constantly busy. We’re always considering possible triggers in every situation, wondering how to explain our child’s unique needs to others and worrying about the future. My daughter suffers from post-traumatic stress disorder and seemingly innocent encounters can send her into a meltdown. I spend hours analyzing every one, looking for the trigger and making plans to help her process it and get through it better next time.
We know more about our child’s condition than most doctors. My daughter is diagnosed with reactive attachment disorder. I’ve read piles of books on the subject and keep up with the latest research online. Her pediatrician has never heard of the disorder. Mental health professionals in our area have very limited knowledge of it. I had to become the expert.
We’re lonely. Our friends and family often step away because our child’s needs make them uncomfortable. Or, perhaps we had to step away because they refused to respect our boundaries and parenting decisions. Most children with special needs don’t respond well to traditional parenting methods. Our brains may explode if we hear “all your child needs is more discipline” one more time. Discipline isn’t the issue; our child’s condition is. My husband’s mother even cut off contact because she found our situation to be too stressful.
We’re fragile. We feel judged all the time. We want what’s best for our child like any other parent and we worry if we’re doing enough for them. We rarely have enough time or energy to take care of ourselves.
So what can you do to help parents of children with special needs? Understand that we’re overwhelmed. Bring us coffee and a muffin “just because.” Tell us we’re doing a great job. Be gentle and kind with us. We’re doing the best we can.
Rachael Moshman is a mother, freelance writer, educator and family advocate.
Published: March 2014