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Mendo Lake Family Life

5 Things to Know about Parents of Children with Special Needs

Sep 03, 2019 11:50AM
By Rachael Moshman

My husband and I adopted our daughter when she was 9 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 challenging set of special 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. Regardless of the diagnosis—ADHD, autism, physical disabilities, Down syndrome, emotional issues, or any other disorder or illness—these characteristics are usually present.

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 from insomnia and nocturnal panic attacks. It is not uncommon for her to be awake most of the night. Even if we do get enough sleep, we’re still run-down from all of 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 potentially upsetting situation, and making plans to help her process it.

We know more about our child’s condition than most doctors. I’ve read piles of books on mental health and my daughter’s specific diagnosis. I keep up with the latest research online. Her pediatrician, psychiatrist, therapist, and other professionals have commented I know more than many of their colleagues. I had to become the expert on my child. I’ve found this is true with most parents of children with special needs. I know a few parents who went back to school to get degrees to become teachers, therapists, social workers, and researchers so that they could help other families like their own.

We’re lonely. Our friends and family often have stepped away because our child’s needs make them uncomfortable. Or perhaps we had to step away from them because they refused to respect our boundaries and parenting decisions.

We’re fragile. We feel judged all the time. We want what’s best for our child and worry that we’re not doing enough for them. Most special needs children don’t respond well to traditional parenting methods. Our brains may explode if we hear one more time that all our child needs is more discipline. Discipline isn’t the issue, our child’s condition is. And that condition isn’t the child’s fault or ours.

We’ve tried everything. We know you want to help, but if there is a possible solution we’ve tried it. I’ve been asked countless times if I’ve tried warm milk for my daughter’s insomnia. We’ve tried everything—conventional and unconventional—in our quest to make life easier for our children and families. We need friends to listen and support, but we don’t need you to offer solutions.

We’re desperate for normalcy. Yes, we’re overwhelmed and exhausted. Our children have quirks that often make navigating life challenging. But we’re up for the challenge and are teaching our children to be open to all that life has to offer. Don’t leave us out. Invite us to your birthday parties, play dates, and moms’ night outs. Our participation depends on many factors, but we still want to be included and will do our best to be there and have fun. Vent to us about your problems, and share the latest celebrity gossip. Much of our lives is spent inside a small bubble trying to manage our child’s needs. We welcome the chance for some fresh air.

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. Find her on Twitter @rachaelmoshman.