Parenthood is a wonderfully joyful, humbling and incredibly hard journey. But it’s especially difficult for parents whose children struggle with mental health and developmental concerns.
Kids with behavioral issues often appear to be healthy kids, so their struggles can catch people who don’t know them well off guard. Think about a child in a wheelchair at the store who is having a temper tantrum—what is your first reaction? Pity? Admiration? Patience? Now think about the child with autism who has the same meltdown, but without the outward signs of a serious medical illness. What is your first reaction in that scenario? Annoyance? Judgment? Be honest and my guess is that your reaction to those two children is different.
Beyond the often-harsh judgment that children struggling with mental illness and their parents often receive, there is an internal struggle plaguing moms and dads. They often ask:
- Why can’t my kid be normal?
- Why can’t they just behave when we are at a birthday party?
- What did I do to make them this way?
- Will my child be okay in school and in life?
- Can they ever have normal childhood experiences like going to summer camp?
- Will they ever be able to connect with anyone?
- Will they be able to sustain a marriage or a long-term relationship?
- How can I stop losing my temper when they push me past my limits?
- Who will take care of them when I’m gone?
These questions are similar for parents whose children suffer from any chronic condition, but the stigma seems somehow heavier for children with mental and developmental disorders because of a social perception that the child or parent could make it better with improved discipline, more effort and more intelligence.
Lack of adequate resources
There is also the issue of accessing appropriate medical care. Behavioral and developmental specialists for children are rare in every state in the U.S. Waiting lists for our local child development and rehabilitation center are months long, as are the waiting lists of most local psychologists, if they are even taking new patients, which many are not.
Most pediatric primary care offices lack the personnel to address the complex needs of children with mental and developmental challenges. That is the reason that I integrated child psychiatry, child psychology, developmental-behavioral pediatrics, family therapy and social work into Eugene Pediatrics. We can’t take care of kids without addressing the whole person and the entire family.
Even the most understanding doctor may not truly grasp what a huge deal it is to run out of medications used to treat mental health issues in kids. It is just as serious as running out of insulin for a diabetic child, or emergency inhalers for a child having an asthma attack. When your child spins out of control without treatment for their severe anxiety, ADHD, bipolar disorder, autism spectrum rages or other similar concerns, running out of their regular medicine, even for a single day, can result in a child being sent home from school for completely disrupting a classroom. Or it can lead to a night with no sleep for anyone in the house. And it takes weeks to get back in balance once the refill is finally filled. Parents of kids with severe mental health issues can barely get through the day, so they deserve some grace and understanding when they fail to request refills more than a week ahead. This is true for all parents whose kids struggle, whether it’s purely medical illness or primary behavioral-developmental disorders.
How do I know, you may ask?
I’m now a step-mom to a child with serious mental health and developmental challenges. I have watched my wife, Jo, struggle year after year as she tries to help her daughter navigate life. I have held Jo in my arms at night as she cried helplessly after years of watching her daughter struggle in school, fail to make friends, spin inside her own head and act out against the people who love her the most. I witnessed Jo’s heartbreak when the most that this little girl could do in our wedding was sprinkle flower petals an hour before guests arrived, while our other three kids actively participated in this special event.
This child is brilliant in so many ways, including reading years ahead of her grade level, but her reactions to things other kids can easily handle are often extreme. To those who don’t know about her inner struggles, she appears poorly behaved or inadequately parented, but really, it’s just part of her disability. Many of the same struggles we are experiencing are felt on some level by parents of all kids who are different in some way from their peers. Other parents standing in Jo’s shoes get it. I didn’t get it until I lived with this child, whose struggles are like invisible chains and prison bars.
But if there’s one thing I know to be true, it’s this: kids often surprise us. Children with mental and developmental disorders are the greatest example. They have moments of incredible, sweet and brave victory. And those moments mean so much to those who love them. It may take time to understand the beauty and meaning of their life, but the rewards are great.
May we all lean in and support those kids who struggle with the silent burden of mental and developmental challenges. And as a community, may we offer them our understanding, our patience and most of all, our love.