By Mary Ellen Hardies

“I don’t love you anymore”

These are most heartbreaking words that can come from the mouth of the world's cutest four year old. I knew she didn’t mean it. I knew that within an hour we would be best friends again, but I didn’t know where her rage was coming from and I still don’t know how my sister can hear these words day after day and never give up hope.

Maybe the the only thing worse than hearing those words was when my sister called the Children’s Hospital behavioral clinic after being on a waiting list for seven months and was told, “We can’t seem to find her files”.

Enter the enraged auntie.

Here’s a little background. From the day my oldest niece Kinsley was born, we knew she was going to have some uphill battles. She took her sweet time coming into this world and doctors haven’t been able to tell exactly what happened, but her left side was delayed in development through her second and third birthdays. She had to drink water with the consistency of hair gel so she wouldn’t choke and learning CPR so I could watch her was the topic of my first post here.

It should come as no surprise that as Kinsley grew older, she had some struggles with controlling her emotions and dealing with transitions, stress and change. These aren’t growing pains. She has blind rages that she doesn’t remember. She hits herself and others, she says hateful words that you don’t think a four year old would know and she can be a little bit scary. My sister has done everything she can. Her primary care doctor is great, but he’s not a specialist and can’t diagnose a behavioral issue. After one appointment, seven months ago, Kinsley was put on a waiting list with dozens of other kids.

Call after call was made to see if she moved up the list, I called connections I had from my time in the media, my fiance called doctors that he knows who run the clinic. At one point my sister was told the files were lost, but it turned out Kinsley’s case was transferred to the doctors who needed it and no one told the family. It was a frustrating and time-consuming experience, but it finally worked. Kinsley has an appointment in April and my sister is hoping to finally get some answers. We hope someone can tell us what puts our sweet, amazing little girl into rage-filled meltdowns.

So what can you do if you find yourself in the same position? First, stay calm. Getting upset and yelling won't’ get you the results you need. Second, understand your insurance. Know what will be covered and what won’t so you can be ready to pay a bill if needed. Third, don’t be afraid to call, call and call again. This is your child or your niece, and you are their voice, their advocate, their champion. Fourth, if you can’t get anyone to hear you, ask for a supervisor, call the public relations department of the hospital, or get on Twitter. Within 15 minutes of my tweet that records were “lost” I had a response, a phone number and a caseworker to look into it. Thankfully, we didn’t need to go that route, but the last thing a hospital wants is for anyone to think they are losing files. Lastly, if you really can’t get anyone to hear you, your child is suffering and the hospital seems to have negligence issues, try calling the local health reporter. Sometimes they won’t actually do the the story, but one well-placed phone call from a reporter trying to sniff out a story can get you to the front of the line...and that’s advice from a former reporter and producer who used to make those well-placed calls.

Here are a few links with some other tips for getting a diagnosis for your child:
http://www.nami.org/Template.cfm?Section=Child_and_Teen_Support&template=/ContentManagement/ContentDisplay.cfm&ContentID=63784

http://www.nlm.nih.gov/medlineplus/childbehaviordisorders.html

http://www.empoweringparents.com/ODD-or-ADHD-Diagnosis-in-Children-Now-What.php

Photo: Andrew Fysh via Flickr cc
Published: March 18, 2014