As a special-needs parent let me be clear that my overriding feeling is gratitude toward professionals who help kids and families with mental health challenges and developmental disabilities. I have a Ph.D. and my husband is an M.D. so I understand the challenges on both sides of this issue. However, I witness or hear from parents too often that professionals lack respect and sensitivity towards them. Unfortunately, this wounds families at a time when they usually need the most support. Next time, I’ll blog on some of the fantastic things I’ve seen professionals do—but today I’m a writing as a parent advocate. On behalf of many families with more dramatic stories, I’m telling a few of mine to lend support and to build some awareness of the issues.
Before I begin, I need to say that I know from a professional perspective that concerned parents can be intense, emotional and may not always think clearly when it comes to the well-being of their children. Professionals have to formulate a differential diagnosis and make a quick assessment of the child’s environment with little information on a first visit. This is difficult. I once called my husband while he was away at a medical conference because our 1 year-old had fallen down the stairs and I was hysterical--especially because there was blood on the stair railing and I was sure our daughter had a major head injury. I stayed up much of the night doing neurological checks. She made it through the night. When my husband came home the next day, he quietly pointed out that the blood on the railing was actually dried cough syrup. Not sure how he would have assessed me that day had I been a parent in his medical office for the first time.
That said, I’m usually a very reasonable person.
My story begins when my oldest daughter was two years old. After months of feeling concerned about her, I took her to see a doctor. Here’s what happened within the first two years of this appointment:
First Doctor’s Visit
The developmental pediatrician walked in the room to see Katie who quickly became anxious. To decrease Katie’s anxiety, I showed her toys and asked her questions I knew she could answer—like the color of the dress on the doll (pink), etc. I didn’t know it yet, but Katie had trained me to soothe her. That happens to moms—they learn and adjust their behavior to meet their child’s needs. Katie knew advanced colors already—it was one of her autism strengths. Colors are predictable—they don’t change—so she liked them. However, the doctor accused me of pushing advanced learning on my two-year-old and wrote in the chart that I was a Ph.D. candidate (that part was true) pushing my child toward premature academic success (colors?)(not true). (Message: Mom is source of anxiety in child). She was wrong, but its ok. I could see how she might misinterpret, and high-functioning autism was not on the radar as much back then. (On the other hand, as a deeply concerned mother on one of the most stressful days of my life, I could have used an encouraging word).
First Treatment
After a follow-up visit, the doctor diagnosed Katie with anxiety and suggested play therapy for her. I took Katie to therapy for a few months with a psychologist. Later I read in the chart that I had improved my play skills after this intervention (Really? Was that a goal? )(Message: If Mom played better, child would be better).
Another day as I spoke to this psychologist in her office, I stood up and bounced my 3 month old as she started to fuss. The psychologist yelled that I shouldn’t stand up when my daughter fussed to comfort her because I was coddling her. I should only comfort her while sitting down and then she could cry if that didn’t work. (Weird. Why was this such as issue? Did she really want my baby to wail in her office?) (Message: Mom is not very good at her job).
Shifting Diagnosis
I still thought that something was missing in the diagnosis because Katie was losing social language previously acquired. I asked the psychologist if Katie might have high-functioning autism. The idea was quickly dismissed. (A few months later, Katie was diagnosed with autism by a neuropsychologist who spend 4 hours observing and testing her in our home. (Which diagnosis would you trust?)
After our move to California, we visited a well-known specialist for a confirmation diagnosis required by the system. This doctor was in the middle of a family crisis (I empathize with that) but after observing Katie for 5 minutes, she refuted the autism diagnosis on the spot because Katie was “playing with her sister.” (It was a moment of parallel play). The records of the visit were strangely lost (thank you, God!) but I feared for months that we would lose all Katie’s services over that impulsive diagnosis.
Getting Services
Within the year, I had to defend that diagnosis before an IEP team who thought Katie functioned too well to have autism. Several years later the IEP team leader admitted and felt badly that the team treated me as if I were delusional. By then, I had founded a non-profit organization to teach social and emotional skills to kids on the spectrum. (At least as a delusional mother I had done some good in the world).
Services in Place
Services began but the speech pathologist became upset with me because I made a suggestion to supplement Katie’s therapy. This offended her because she “was the professional”. I apologized but told her through tears that I had to do as much as possible because I would live with the consequences if Katie didn’t make good progress, not her. (She seemed to consider this for the very first time—how much Katie’s progress meant to me).
This is a small sample of stories I could tell about professionals who hindered as much as they helped. Moms and dads, have you had similar experiences? How did you feel? Did you waste hours second-guessing what you knew about your child? Were you unjustly suspected of child abuse, neglect or poor parenting? And on another note, does anyone check in with you to see how you are doing? Do you have a name at the doctor’s office--or are you called “mom” or “dad” as if you have no skills, life, or personality aside from being a parent?
It’s ok. Really. I am not mad nor do I carry any grudges. I tell my story because sometimes parent input is still dismissed and parents are blamed for problems they didn’t cause. There is a strong emphasis on the effects of trauma right now which brings child abuse to everybody’s mind. Overall this is good, but I’m pretty sure that some parents are overly scrutinized and less supported because of this trend. I’m also concerned that parents are not taken seriously when they have suggestions for their own child or for their communities. I spent years on the mental health advisory board in my county and saw competent parents ignored or marginalized—their hard-won wisdom wasted. It’s a shame.
I guess this blog is partly a call for system change, but mostly it’s a shout out to parents—to guard your hearts and trust your instincts. We need M.D.s and Ph.Ds. to diagnose and give us a direction to follow, but they will come and go in your life. Listen to them, but get a second opinion when you are unsure because you know your child best. Above all else, listen to God’s voice because He is constant and knows the child He created.
Finally, There’s no need to feel inferior because you are “just a mom or dad.” Keep your confidence. God gave you your child for a reason. You have done one of the most difficult things in life—watched your child suffer, grieved deeply, secured appropriate therapy while trying to keep dinner on the table and a smile on your face. You and God have got this together. Bind up your wounds, carry on and seek God’s opinion above all else.
Dr. Karen Crum is the author of Persevering Parent: Finding Strength to Raise Your Child with Social, Emotional or Behavioral Challenges. Visit her website or join her blog at www.PerseveringParent.com.
