As I came home from work yesterday, I made a mental note, that it’s been about a week since I received the letter from the analyst at ADTP regarding my daughter and their findings.  I had been promised a phone call by early this week with an answer from the manager of the program but hadn’t heard anything yet, however, I did get a call I couldn’t take while I was at work, so hopefully after I grabbed some dinner I could check my messages.  Sure enough, there was a message saying I would be receiving a phone call from the writer of the letter, probably today, and would get some kind of explanation.

“Hi, I’m calling to discuss your how you see things about the letter you received.  I’m no longer with the program, and work at the Foothills now, but I could meet you next Tuesday and we could talk about it.  You could ask me questions if you have them.  I guess I could book a room there.  The manager said you have some questions about things.”

“ Yes, I do have questions, but really not so much about the findings in the letter. I spent an hour Googling things, and even though I don’t like Google for medical things, I managed to get some explanations. I have questions as to how the situation has been handled.”

“What do you mean?”

“I mean, I am not a medical professional.  I gave permission for a testing to be done on my child.  Last week when I came home from work, there was a letter in the mail, not even marked private or confidential, with a whole lot of big frightening words and mistaken information.  I don’t understand why it was sent to me without being discussed first?”

“Because you agreed for the testing to be done.”

“Yes, I agreed. In my experience, whether it is in the school system or at hospital, when something official is done, results are discussed with parents, and then with the child.  Instead, I was sent a letter I didn’t understand.  I don’t even know what the purpose of the letter was.  I don’t know if was a diagnosis, information, treatment advice, an assessment?  I have no idea.  There wasn’t even a header letter addressing me and saying what it was for.”

“There’s a disclaimer when I talk about the test that it’s not a diagnosis.”

“ A disclaimer?  Half way through the letter?  You have information about me having mood and anxiety problems in the past.  Except for 6 months of post partum depression 21 years ago, and being in a severely bad mood right now, I can assure you I don’t have a problem.  I don’t know where you came up with information like that.”

……..silence………

“Your description of my child was wrong.  You didn’t even spell her name right.  This is supposed to be a professional document.  And then you send it in the mail.  Why didn’t you at least call to talk to me about it?”

“I was filling a matt leave position.  My time was pretty much up, and I usually sit in on appointments when these things are discussed, but we never had that opportunity.”

“We were there an extra month.  I was there every single week.  How could we not have time?”

“Well, for some reason it didn’t work, and I had to finish off the position, so I just typed up the letters and sent them out so I could finish things off.”

“Finish things off?  That’s how you dealt with it?  Just get it done?  You mail me a letter?  What if my boys had opened it?  Worse yet, what if my daughter had opened it.  That information in the wrong hands could be devastating!”

“She already knows.”

“What do you mean, she already knows.  No she doesn’t.  I told her nothing.”

“Well, I told her.”

“You what?”

“I told her.”

“Why would you do that?  You talked to her about this stuff without my permission?  Without talking to me first?”

“Well, kids want to know.”

“Yeah.  Kids want to know tons of stuff.  Doesn’t mean you tell them everything!  How could you do that?  How could you possibly put me in that position?  No wonder she was having such a hard time!!  She was phoning help lines, cutting, restricting……things were awful.  I can’t even talk to her about it now!  How could you do that without discussing with parents first!?!  You certainly made a call for permission to run the testing!  Shouldn’t you do that when it comes to the findings too?”

“Well, I guess.  I mean, if this is how you think it is.”

“This isn’t what I think it is!  This is how it is.  Put yourself in my position.  Imagine this happens to you as a parent.  Can you remove yourself from your profession for just a moment and imagine what it’s like to have all of these things happen?  Do you have any idea how I feel as a parent?  We aren’t bad people.  We aren’t abusing our kids and making their lives awful.  We are fighting tooth and nail every single day to keep them alive, and help them get better, but don’t have a fighting chance when your programs just do what they want.  You can’t cut me out of this!  I’m her mother and I won’t be cut out.”

“Well, I guess I can understand a little.  I imagine if you think it is that was.  No one else got the information.”

“Not even YCuSP?”

“No.”

“Why not?  Isn’t this information for her treatment?  Why do I even have her in programs if you’re not communicating with eachother?  She doesn’t need a babysitter, she needs support and help.  She is dealing with very heavy stuff.”

“Well, I guess I understand these things so it’s difficult for me to take a step back and see what you think it is.”

“Ok, that’s it.  I’m not having a meeting with you next week.  I’m very upset right now and getting emotional.  This is not how I make decisions.  I’m going to hang up the phone and think.  This isn’t over, but I need to be calm before I discuss anything any further.  I am going to think about who I want to talk to, and how I’m going to deal with this.  Hear me clearly – this is not over.  You will hear from your director, and the proper changes will be made to that letter.  ”

“Ok, I can understand that.”

“Goodbye now”

(ring, ring, ring)……..now what………

“Hello?  This is YCuSP.  How are you doing this afternoon?  Can you talk for a moment?”

“Seriously, don’t even get me started…..”

This is not over.  They have not heard the last of it.  You can’t take away the right of the parent.  Delivering any kind of results to a child without the parent present, or at least discussing the results is wrong.  They took away the possibility of me asking questions, getting perspective, and having a potentially reasonable discussion about something that is very serious.  To make things worse, I get to deal with the aftermath while they go back to their programs and “finish things off”.

It’s time to start a campaign, write some letters, make some noise.  I will continue to fight for my daughter.  Anger stirs my passion, and when I get passionate about something, well, just watch out.