The Tale of the Purple Dog

Living with neurological challenges and learning problems can be a lot for a child to cope with, and some may start to feel stupid or bad about themselves.

One of my young patients kept referring to himself in negative terms and his self-esteem was down in the dumps.  So one day, after he had resisted standard cognitive-behavioral strategies, I decided to try another approach and took him out to my waiting room, which is filled with art by the very talented Daniel Patrick Kessler.

I pointed to one of the images, Celebrating Diversity II, and asked him what he saw.

We talked about the painting, and how even though each dog was a different color, they were all dogs. Different, but same. Same, but different. And didn’t all the colors make things more fun?

“Would it be kind of boring if they were all the same color?” I asked.

“Yes,” he replied.

“So…. which dog are you?” I asked him.

He looked at the painting for a minute and then said, “I’m the purple dog.”

Since that day, he humorously refers to himself as The Purple Dog. His parents affectionately call him The Purple Dog, too, but most importantly, he’s accepted that while he’s different from other dogs, he’s still a dog, and a fun one at that.

That one exchange changed his outlook. His mood improved and he started doing better in school. He no longer refers to himself as a “stupid r—–.” Now he refers to himself with pride as “The Purple Dog.”

“The Purple Dog” wrote about some of his experiences, and with his permission and his parent’s, I’m reproducing his story here:

Once there was a purple dog. This dog was always made fun of and he had very little confidence in himself. He thought of himself as low and had very little value. All the other dogs were regular dog breeds such as dalmatians, golden retrievers, pugs etc. so the purple dog was made fun of because he was different.

The purple dog wished and prayed every single day that he wasn’t different because he hated being laughed at by the other dogs. The purple dog usually stayed at home when all the other dogs were hanging out and having fun. The purple dog also had trouble in mathematics so the other dogs used to call him stupid. Unfortunately the purple dog didn’t have the confidence to try harder in math because he had such low self esteem. The purple dog had no friends because all the other dogs laughed at him and called him stupid.

However one day when the purple dog tried to play soccer he was simply brilliant at it. Then he tried the tenor saxophone and he was brilliant at that too. He joined his school band and he captained his school soccer team.

He did phenomenal in school after that because his confidence was high. Everyone thought he was worthless but he proved them wrong!!!!!!! He made a ton of friends later after he realized that he was the Purple Dog – unique and special in his own way!

Thank you, Purple Dog, for sharing your story. And thank you, Daniel Patrick Kessler, for helping celebrate diversity and for giving me a tool to help a young child appreciate that although he’s different in some ways, he can be proud of who he is.

Talking with your children about the Sandy Hook school shooting

Yesterday’s tragic events in Newtown, Connecticut are all over the news.  At times like this, parents often ask how they can help their children cope and how to talk to them about something that we can’t fully wrap our own heads around.   So here are some tips on how to talk with your child:

1.  Start the conversation.  If you don’t start the conversation, their first source of information may frighten them more.  Start by asking them if they have heard anything about what happened at an elementary school on Friday.  Avoid asking, “Have you heard about the tragic  shooting at a school?” or anything that would start out by elevating the level of emotion.  If they say they’ve heard something, ask them what they’ve heard and then begin to calmly tell them the facts.

You do not want to tell them everything at this point – providing too many details can flood the child and make them fearful. Try to keep your emotions in check so as not to overwhelm your child.  For some of us, this will be the hardest part as we have been crying ourselves and find this incomprehensible or overwhelming.  At this point you need to be focusing on your child and not your own feelings.  Turn the TV off when your children are around because if they see you responding to this with intense emotion and absorption, they will, too.

2. Give them information that is age-appropriate for them. I would not tell pre-schoolers about the tragedy at all, but for elementary school-age children or older, tell them what happened:  a young man got into an elementary school and started shooting teachers and children.  You do not need to tell them right away how many children died. Wait to see if your child asks you. Take your cues from your child’s reactions: if they ask you questions, answer them calmly, but do not give them more information than they are asking for at this point. This is your first conversation about what happened, and they may come back to you numerous times with other questions or concerns.  Each time, calmly answer their questions but do not give them more than what they are asking for.

3. Give them an opportunity to express their feelings about what has happened and what you are telling them. Avoid implanting strong emotions. If you say, “It’s tragic” or “It’s so awful,” your child will adopt your emotional response.  Do not be surprised if young children do not respond as strongly emotionally as you do. Their focus may be on “How does this affect me?” Help them express their emotion.  Children can do things to express their own feelings and to offer comfort to others.  Would they like to do a drawing for themselves? Young children can often express and work through their emotion that way.  Would they like to write “Sandy Hook” on a balloon and then go to a beach or park and release the balloon to release their sadness? Older children may want to send a letter to the children of Sandy Hook to express sympathy or comfort and  can send letters to Sandy Hook, 912 Dickinson Dr., Sandy Hook, CT 06482.  Or perhaps your child might like to go plant something in your garden to remember and honor the children who died. We don’t want to encourage them to overfocus on grief or worry, but do encourage them  to express their emotions and support them in a way that is appropriate for them.   Do not push your child to do any of these things, but be prepared to suggest them if your child seems to be having a difficult time expressing sad or worrying feelings.

4. Reassure your child that they will be kept safe.  This is probably the most important tip I can give you. It is understandable that your child might react by thinking, “What if this happened in my school?”  Tell your child that what happened in Newtown is a very unusual event and  that their school has always kept them safe and will continue to keep them safe. For older children, reassure them but you can add that all schools are working to learn from what happened in Newtown to make their own schools even safer.  If your child expresses concern about going back to school on Monday and wants you to take them, tell them that you will take them on Monday so they can see that their school is safe.

5.  Be prepared.  Young children cannot hang on to sadness or intense feelings for long. After a few minutes, your child may ask, “Can I go out and play” or “Can I go watch my show?” That does not mean your child has no empathy. It means that they are doing what children do – thinking about themselves and their needs.  So yes, let them go out and play or watch their show if you normally would.  Remember that this is just your first conversation with them, and we do want them to learn that even when there’s bad or sad news, life goes on.  Keeping your child in their normal routine will help them cope with the news.

6. Monitor your child afterwards.  Many of our children have OCD, anxiety, or depressive symptoms already.  If your child appears to be thinking about the Newtown tragedy too much in the week or weeks to come, if they suddenly become more clingy or demanding, or if they resist going to school,  they may need more help coping with it.  Keep the lines of communication open, but if you see significant mood or behavior changes, do not hesitate to contact your child’s psychiatrist, psychologist, or pediatrician.  Their school psychologist can also be a helpful resource for children who are having difficulty coping.

 

Carousel image credit: Image credit: In this photo provided by the Newtown Bee, Connecticut State Police lead children from the Sandy Hook Elementary School in Newtown, Conn., following a reported shooting there Friday, Dec. 14, 2012.  (AP Photo/Newtown Bee, Shannon Hicks)  

FDA warns Judge Rotenberg Center over shock devices

The Boston Business Journal  had a news story today that caught my eye:

The U.S. Food and Drug Administration has sent a warning letter to the Judge Rotenberg Educational Center in Canton, Mass., saying the Graduated Electronic Decelerators it uses to shock patients with autism and severe behavioral disabilities are in violation of FDA regulations.

The FDA says it has twice before notified the Center, on May 23, 2011, and June 29, 2012, that because changes were made to the device since it was approved, the center must file a new application for approval with the FDA. The Judge Rotenberg Center is the sole manufacturer of the GED device, and it is the only facility in the U.S. that uses it. The latest letter from the FDA was dated Dec. 6.

Read more here.

If the devices have been out of compliance with FDA regulations for a while, why didn’t the FDA shut down their last year after JRC reportedly failed to respond appropriately to their May 2011 notification? This federal agency is supposed to be protecting health. And when did they first find out that JRC was using out of compliance devices?

In related news, the U.S. Department of Justice Office of Civil Rights informed me several months ago that its 2010 “routine investigation” of JRC’s use of shock on disabled residents was still under investigation. That can mean a couple of different things, one of which is that they’re trying to negotiate something with JRC to avoid having to take them to court. Alternatively, it could mean that they’re just really slow and not rushing or making this investigation a priority.

When the health and welfare of children and disabled adults may be at risk, the government should be moving much faster than it has to date.

A lesson learned from Hurricane Sandy

Hurricane Sandy did a lot of damage in my area (Long Island).  A lot of damage. Indeed, my office was closed for about two weeks.  I couldn’t call my patients and they couldn’t reach me.  Next time, I’ll make sure I have a better backup plan, although even cell phones weren’t working for the first few days as the cell towers also got damaged.

But all my young patients have returned to therapy, and it’s been interesting to hear how they and their families managed to cope with being without power and having their lives disrupted.

Now you might think that kids with a lot of OCD or anxiety problems would get even more anxious under unplanned and unpredictable circumstances, right?  Well, you’d be wrong.  As I saw after 9/11, kids with anxiety disorders actually did really well – as well as their non-anxious peers, anyway.  Most of the adults in my practice also reported no exacerbations in anxiety during the long power outage, although they reported more frustration and anger, as one might expect, since the adults were dealing with the power company and the children weren’t.

One of the things we also learned was that being without internet and electronics turned out to be a Very Good Thing.  Kids and teens in my practice reported that at first, they felt somewhat disconcerted or at a loss without their usual activities and online interactions, but after a while, they realized they were actually less stressed and more relaxed without all the internet and electronics.  Some found other ways to amuse themselves, like reading or going out more to play on the street during daylight hours when they might otherwise have been indoors on the computer.

Of course, having no school may well have contributed to their less anxious state, but it’s interesting that they uniformly reported feeling better without so much internet and electronics.

Now the trick is for us to capitalize on that awareness.

Carousel image credit: NOAA

A gift and a legacy

Grab your coffee or preferred beverage, and settle in while I tell you a story about how a chance meeting changed so many lives.

Back in the early 1990′s, in a far-off land called CompuServe, I met a nurse in CompuServe’s online mental health forum for professionals. I had joined the forum to share information about Tourette’s and OCD in the hope of educating other professionals so that more children could be accurately diagnosed earlier.  In fact, my main web site was originally developed to support a Canadian pediatrician who covered a 500-mile radius and who had no idea how to help his young patients with psychiatric disorders or their parents. But this post is not about him, but about the nurse I met in that forum.

That nurse, Jacqueline (“Jackie”) Aron, reached out to me in e-mail after reading some of my posts in the forum. Not to seek support, but because she thought that maybe I needed support as a mother. She knew nothing of Tourette’s, but in her e-mails, she described her own child’s struggles and how things had gotten better over time. I was touched by her effort to offer me hope, but the more I read about her own struggles, the more I suspected that she had Tourette’s and/or OCD and just didn’t know it.

A few weeks later, Jackie and I met in person for lunch, and it was only a matter of minutes before I was sure that this bright, caring woman had spent the last 30 years of her life misdiagnosed.  But how do you tell someone that they’ve almost certainly been misdiagnosed and mis-medicated for 30 years? It took me a few more weeks to figure out how to raise the issue with her, but as a result, Jackie finally get the correct treatment for her problems.  Now in her 50′s, and with her new doctor’s help and my family’s support, she first began enjoying life and understanding herself.  For the first year after her diagnosis, Jackie spent a lot of time with my family, getting support for herself as she went through withdrawal from the heavy-duty medications she had been on for years, and learning about TS+. She became deeply involved our lives.

What I didn’t know when I first reached out to help Jackie, though, was that Jackie was “a woman of means.” It was only after we had become good friends that Jackie disclosed that she was wealthy. And now,  having spent most of her life misdiagnosed, Jackie set out to use her considerable resources to make the world a better place for kids with TS+. She threw her time, energy, and money into supporting TSA and founding a support organization for parents.  And whatever I needed to foster my pro bono advocacy efforts, Jackie provided without me even having to ask.

For the next 10 years, Jackie lived a totally different life than her first 50+ years, but complications from cancer got her in the end.  Her death was devastating to so many.  In 2005, I wrote to a friend about Jackie’s life and death – my letter was posted by the friend online.  But there was a postscript to the story that I didn’t discuss in that letter.

Shortly after Jackie’s death, a letter had arrived in the mail.  It was from Jackie’s lawyer, telling me that Jackie had remembered my children in her will.

Incredibly, Jackie had left my children a $1 million trust fund to pay for their education.  I knew she had supported some other children’s education in the past, but this gift of hers felt totally overwhelming.  I realized that  - once again – Jackie was paying my help forward.

Two weeks ago, my younger child — who struggled with her own significant challenges from TS+ — finished her doctorate in psychology.  Along the way, she also became a volunteer suicide hotline counselor, offering help and support to many who have needed it.

Some day, perhaps, I’ll you her story of adversity, hope, and triumph, but for now, she has inherited a legacy, as she couldn’t have gotten the education she got if it hadn’t been for the generosity of Jackie Aron.  And I hope, as my wonderful daughter begins her professional career, she will continue to volunteer her time and skills to help those who need her help.  I hope she will continue to pay Jackie’s gift of hope and opportunity forward.

Carousel image credit: © Marek Uliasz | Dreamstime.com

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