Five things to know about parents of children with special needs and how you can support them!
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.
Melissa
May 27, 2015 -
Thank you for your articles on parenting older adopted children. Your comments are spot on how I feel as a adoptive parent of special needs children.
Marcia Hinds- Ryan’s mom
Jun 1, 2015 -
Thank you for writing this. Parents need to be told over and over again all the points you mentioned. My son is now recovered from autism and is an engineer at a major aerospace company doing all the things “the experts” said could never happen. Check out my book and Ryan’s story of recovery at http://www.iknowyoureinthere.com. Thank goodness I didn’t listen when the psychiatrist who was the leading authority on autism said there is no hope, no cure, and no recovery from autism. Parents definitely know their kids best and need to trust their instincts to help them. I’m sharing what you wrote with my fellow autism warriors!
Jason
Jun 3, 2015 -
My wife shared this the other day and when I read it almost cried. Our daughter has severe developmental delays from her previous institutional life and was recently diagnosed as autistic. For the past four years we have left every single one of those points, especially the tired, the fragile, and the lonely. Its good to know we are not alone.