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Sunday, August 30, 2015

Dodging The Special Needs Provider Who Might Make Your Child’s Problems WORSE

Copyright Amy Aves Challenger 2014
“He refused to leave the gym. Refused ME,” Ms. D. the special needs camp director said over the phone.

“That must have been so frustrating. I replied. “It sounds like he was shutting down. Probably anxious because…”

“I know lots of kids like him,” she interrupted. “But they still do what I say, no matter how they feel inside.”

“Hm.” I’d been worried about her “no matter how they feel inside” approach all week, but had tried to keep an open mind. I wanted my 9-year-old boy to enjoy a summer camp that understood kids with differences. Eager to find the right place, perhaps I’d convinced myself to overlook this director’s approach. She had demanded a lot of money in advance, for a minimum four-week commitment, with a no refund policy. But after trying countless “mainstream” camps where our son had been miserable, I decided to give this special needs camp a try.

Later my son described the scenario differently than Ms. D. “She pulled the chair out from under me. She yelled at me to leave. I wouldn’t go. It wasn’t fair. They had broken the rules of the game. Then she shoved me, and I started to cry… I was scared.”

“That’s a blatant lie!” Mrs. D. said when my husband and I shared our son’s account of the day. Because Ms. D. became so angry when confronted— we didn’t send our son back for another day of her camp.

Though our son is handsome and tall with smiling blue eyes, he suffers with severe depression. But depression and anxiety in kids doesn’t always look like adults expect. The comprehension and social skills deficits that can cause depression, are problems that often present themselves through defiant behavior. Our boy doesn’t comprehend why he should listen to you when he disagrees with you, why he should (ever) have a negative consequence, why you have changed a plan or a rule without warning him in advance, why he should not always tell you when he thinks that you’re wrong. And when your words reach him, they are all jumbled with emotions and prickly feelings. He becomes overwhelmed. He thinks you hate him.

And so for the last eight years, we’ve been seeking providers to help. We’ve worked with teachers, therapists, doctors, specialists, and integrative practitioners. Here are a few things we’ve learned about choosing providers along the way:

Watch out for the provider who is abrupt with your child, disinterested in your input, all while promoting his or her own expertise. At my first point of contact with a new provider, I need to watch his or her mannerisms, tone of voice and facial expressions. I should analyze his or her questions (or lack of questions) asking myself, how would this person respond when my son shows his most difficult traits? How will this provider interact with me when we have a crisis?

“NO,” my son says too often if he becomes stressed. For the inflexible provider with a one-size-fits-all technique, my son’s anxious behavior can feel overwhelming. And if an (overly confident) specialist feels overwhelmed/incompetent, he or she might strike out at our son, making his behavior worse. By blaming the child, the parent, or another provider, a specialist can disguise his or her own inability to find solutions.

On the flip side, our best therapists and doctors have wanted to observe our son’s most challenging behaviors. The good provider doesn’t shy away, but develops effective treatment solutions only after he or she clearly identifies the underlying conflict. The professional who can help us best collaborates with other providers, and my husband and I, and then helps create cohesive treatment solutions.

Worry about the provider who says he or she can make everything “all better.” Once when our son was six, we went to a social skills teacher named Shana. She’d just started a new social skills “school.” Even with a paraprofessional, his deficits had been causing him to alienate the kids and teachers in kindergarten, so we had taken him out of school permanently. We had begun homeschooling with a private teacher, but still needed a place for him to make friends and practice more healthy ways of socializing. “I’ve got his number,” Shana said.

“What do you mean?” I asked.

“I can fix his ADHD. I know how to make it go away.” She smiled across a picnic table covered with neon binders all organized with emotional regulation tools for each child to study. I fell for it. Her promise sounded heavenly at the time.

She advised me to leave our son with her and a small group of children for a half day, twice weekly, so that she could get to work. She didn’t ask to talk to our son’s therapist or OT who had been working with him for three years. She didn’t ask us what we had already tried at home or with other therapists. And I was too desperate (or too deep in denial) to recognize these warning signs. Shana said she simply knew how to make his problems go away. Looking back, I realize that I was seeking a savior— some magical professional who’d wave a wand, making my child all better.

You might not be surprised to know that Shana’s “method” caused our son’s anxiety to skyrocket— just like Ms. D’s! And when our two therapists requested to meet with her about his increased anxiety, possibly caused by her new intensive services, Shana became angry. She sent us a time-stamped letter stating that our child and our therapists couldn’t return to her school (meaning our child had no way to say goodbye to his new friends.) Then she called Child and Family Services reporting that I was neglecting my children. The county employee visited our home a few days later to see if my kids were being neglected. She said, “I’m so sorry about all of this,” as she tip-toed out of our serene California home. Ironically that CFS woman actually gave me the boost I needed at the time. She observed that I stayed home with my children, full-time, along with a full-time nanny, therapists and multiple teachers helping me. She said, “I can’t imagine what more you could do to help your child.” But still, Shana’s treatment of our 6-year-old was damaging enough to make him retreat to bed depressed, unable to eat for several days. He felt that he had failed. But truly Shana had, and so had I by trusting her.

Doubt the provider who backhands the competition, who doesn’t recognize any resources outside of his or her office, and who throws a diagnosis at your child too quickly. This brings me to the story of the senior Yale psychiatrist I’ll call Dr. McW, a faculty member whom we hired to treat our now nine-year-old son this past year. He immediately told us that everything everyone else had said about our child was probably wrong. According to him, most other psychiatrists were incompetent. He diagnosed our son over the phone, “knowing” him before meeting him or me in person.

Because our boy’s behavior had become unbearable, I was (again) desperate for answers and relieved to hear all of this doctor’s big ideas. But after one visit, this man prescribed a medication for our boy that abruptly caused him to fall into a severe depression, much worse than we had ever experienced. When I called Dr. McW, asking for help, he told me, “I’m concerned that no drug is going to help your child. His problem is simply that he’s an obnoxious twit.” (Before firing Dr. McW, I actually asked him to repeat his statement for me so that I would be sure I wasn’t going completely mad.)

Today we have a psychiatrist who asks my husband and I what we think. She listens, asks more questions, and then makes her recommendations. She admits that she isn’t completely certain what, if any medication will work. She’s smart and humble and we trust her for this reason.

As we have pushed past the difficult providers, I must mention that there have been heroes too along the way. I suppose the worst of providers have trained us to recognize the best. There are the two swim coaches who have ignited our boy’s love for a sport he not only excels in, but where he can finally make lasting friendships. There are the homeschool teachers who worked with us in our home, supporting every aspect of our boy’s struggles and loving him completely along the way. There’s also the faithful nanny who treated all of my children like they were her own beauties, despite some very tough times. Nothing was beneath her if it helped our son and my family, and I’m eternally grateful for her.

Maybe the best lesson learned as we have sought help for our son is that we do indeed have tremendous resources within ourselves as parents. When we acknowledge all of the “knowing” that has come from the thousands of days we’ve spent with our children, we can act confidently as their greatest advocates. We can identify the best people to lead them. We can follow our instincts with confidence, admitting to our mistakes, while helping our children flourish, despite their challenges. Most of us have been privileged to see our child’s greatest gifts since his or her first breath of air. Those gifts have carried us onward. We’ve heard the unique pitch and tone of voice since the first screams. Now we can help our child protect the essence of who they are, polishing it up to shine for the rest of the world to see.

We don’t need degrees. We are parents.