routerecalculation

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.

Dear Psychologist,

I’m writing in response to a letter I received from the program at ADTP yesterday regarding my daughter.

First, I’d like to say I’m always disappointed when I receive a letter from a professional where details such as spellings of names and punctuation is wrong.  In your letter, my daughter’s name was spelled one way, and in the very next sentence it was spelled a different way.  As well, in the physical description portion of the letter, you described her as having blonde hair and blue eyes, when in fact she has brown hair and green eyes.  At no time has she ever had blonde hair.

On a little more important note, there is a section of the letter that describes me as having, “a history of anxiety and mood problems”.  Other than a short bout of post-partum depression 21 years ago, at no time have I ever been diagnosed with anxiety or mood problems.  Being that I have never had a conversation with you, I am not sure where this information was obtained.

As I am unclear as to the intention of the letter, my largest concern is the nature in which critical information has been delivered.  To receive a letter of this type in the mail without having discussed the content with a professional has caused me undue stress.  After 1 hour of researching terms, I managed to have a better understanding of the content, however the alarm was not necessary and could have been avoided with a professional discussion.

Over the last year I have experienced numerous communication breakdowns, but I must say this has been one of the most disturbing.  There was no marking on the letter at all that stated private or confidential.  The information contained in the different sections was very technical and should have been explained in context in a professional setting.  Had this letter been opened by the wrong hands, it could have been potentially life changing in a very harmful way.

I would like the following:

1.  An answer as to what was the purpose of the letter?

2.  Any statements of potential diagnosis of myself removed.

3.  Information as to whom, if anyone other than myself, has received a copy of this letter.

4.  Corrections regarding physical descriptions, medications and basic spelling.

5.  A professional, in person explanation of the terms and what they mean in relation to my daughter and the current situation.

The amount of stress this caused was unnecessary and could have been easily avoided.  I should not have had to spend time on Google, looking up medical terms and references in order to understand the descriptions being made.  I would hope that in the future, no other parents would receive a letter of this type without having the chance to sit with a professional and have a discussion first.

Sincerely,

I could have written a letter like this.  I was actually tempted, but the nagging in the back of my head would not let me wait that long, so today, I picked up the phone and began making phone calls.  First, I called my daughter’s last psychiatrist – no connection.  Then, I called the last family counselor – no connection.  Then I called the psychologist……….yet again, no connection.  Now I’m learning to be level headed, patient, and all of those other things that parents of the year are supposed to be, but there are times where you just don’t give up.  I kept calling.   At this point I decided to go a little higher, and believe it or not, I obtained the personal cell phone number of the director of the ACH and ADTP programs, (can you believe that?!),  so I called.  And I called.  And then I got through.

Calmly and graciously I explained what had happened, and the letter I got.  I will not go in to any description here, because believe me when I say this.  If this information was put in to the wrong hands, and if my daughter found it, it could be life altering in a very negative, potentially tragic way.  Not necessarily because it’s so bad, because in context it’s more heart breakingly sad than anything, but because it so tremendously technical, and the terms are largely misunderstood.  Judgements made from these terms could be devastating.  I know when I read it, prior to Googling for an hour, I was very scared and upset.

“Are you telling me you haven’t had anxiety or mood issues in your past?”

“No more than any other single mom with 3 kids left to raise them on her own without any support.  I will say I’ve been stressed at times when faced with payments coming every direction, not to mention all of the other things I’ve gone through.  That doesn’t mean I have a history of anxiety problems.  It hasn’t been easy, sure, but that doesn’t mean I need to be documented on paper as if being diagnosed.”

“ I hear what you’re saying.  I do understand how this could be alarming.  Who wrote the letter – as in who signed it?”

“My question, is who else has it.  This is serious.  I’m not amused.”

We continued to discuss the nature of the situation, and how I was left trying to understand it’s meaning.  After being commended on my calmness, I reiterated how this kind of communication, or lack thereof, is disrespectful and unprofessional.  Parents are in extremely vulnerable states when dealing with their children and mental health.  Adding situations of this sort to an already very heavy load is unnecessary and doesn’t have to happen.

My heart is very sore for parents who are just starting on this journey.  There is so much to learn about the system, and it’s so very frightening – especially at the start.  I wish I could hug every one of them and tell them it will be all right.  The programs are good.  They’ll get the help they need.

The truth is, there is no way I can reach everyone I want, and there is so much to be said. I realize, the same 12 people could be reading every post I make, which is good too, but am I really helping anyone?  I probably think of 5 posts a day I could write, but sometimes my energy ends up just being channeled in to staying strong myself.

What I can say now, is if you are just starting this journey, are in the middle, or maybe have no idea where you are in the big mess of things, know this.  You are not alone.  There is help – lots of it.  There are probably many people around you going through similar things and you don’t even know.  Reach out.  Listen to that voice inside you. (I recently learned that gut instinct is usually right, because of the strong connection between our gut and brain – makes total sense.  The largest concentration of nerves are in our gut, taking messages from our brains.)  Trust what you feel, and when you’re not strong enough to fight anymore, to make the calls, to answer the questions, and to stand strong and make your voice heard,  reach out.  The help is there.

I’m there – silently sending out prayers for everyone else going through this too.

When I found out I was pregnant with my first, I couldn’t have been happier.  I was about 27 years old, and my internal clock was going crazy.  I was so excited to be a mom.  Naturally, one of the first things I did was I went out and bought a pair of maternity overalls.  They were soft blue denim lined with pink and blue plaid material and had rolled up cuffs.  I posed proudly for pictures, proclaiming that at just 3 months I needed to be wearing them, and I did so proudly.

Next,  I went to the local book store, and bought some books on parenting, but my favorite was a book I got was on every phase of pregnancy up to when you have your baby, and their development journey till 12.  I absolutely loved this book.  Each chapter showed a diagram of a woman, what the monthly changes were, how big the baby was at each stage, and all the different things to expect.  There was great information on emergencies, first aid, feeding and caring for your child, and natural behaviors at each age.  One of the chapters I got a kick out of talked about “the terrible twos” – that crazy time when your child starts spreading their baby wings, and trying things out on their own.

That book stopped at age 12.  I never really understood why there was no information past 12, and probably dismissed it as it was a long way off.  As my first started to grow, and head towards that frightening adolescent stage, I was having a lot of difficulty with his anger and related behavior, so I bought two books, one called “Preparing For Adolescence”, by James Dobson, and “The Strong Willed Child”, by the same author. . I I was desperate for answers and how to effectively manage my seemingly out of control son, so I sat up all night long, reading, and desperately trying to find answers.  I will never forget that book.  If nothing else, it taught me one crucially important thing.

Never take parenting personally.  Never.

Now in retrospect, what I was going through with my son was incredibly small in comparison to this roller coaster I’ve been on throughout the last year, but at the time, it couldn’t have been bigger.  The book explained, that at some point in time, you will stand face to face with your child, and they will tell you how much they hate you.  They will lash out, be angry, perhaps throw tantrums, maybe scream and shout, slam doors, and do whatever else they can to get their point across.  The author shared that it is absolutely critical at that point not to take their words personally, because once you do, the lesson becomes about you and not about them.  If you turn and pout, or cry in front of them, or cower from what they’ve said, you will have lost the battle, and will bring a whole new level of issues in to the picture.  At the most hurtful, difficult time, as those words cross their lips, remember that they absolutely don’t hate you.  They love you, and are begging for boundaries while perhaps hating the circumstances surrounding them at that moment.  If you can separate yourself from that moment, take the emotion out of it and stand strong to deal with the issue at hand, your relationship will grow, respect will be established, and you will be able to move forward.

I specifically remember the day it first happened.  By the time my son was 13, he was 6’3″ tall.  At a mere 5’ 3.75″ (when I stand straight), he towered over me by a foot.  We stood almost nose to nose in the hallway, him shouting the words in to my face, “I hate you!”  I looked back at him and in a stern but calm voice told him that I loved him, and that although he was angry at me at that moment, I had meant what I said.  I don’t even remember what the issue was, but I remember the thoughts going through my head at the moment.  “Don’t cry. Remember, you’re 7’ tall on the inside.  Stand firm.  Don’t yell.  Crap – he’s huge.  He could take me down right now.  What if he hits me?  Stand firm.  He loves you – he’s just angry.  Stand firm.  Don’t cry. Crap he’s huge.  Why is he so tall?”  I remember him turning around, going to his room and slamming the door.  It shut so hard, that the door stop came right off the frame.  About 10 minutes later he came out of his room, fists clenched and said. “And just to let you know, I punched my dresser and cracked the side.  I’M SORRY!”  I sat in my chair and just looked at him as he marched back in to his room.  This time he couldn’t slam the door, because there was nothing to stop it.  I didn’t even know how to respond, so I didn’t.  I let a little time pass, and everyone in the house stayed pretty quiet.  About an hour later, maybe a little longer, he came out of his room.  I was still sitting in my chair.  He walked up to me and sat on the couch.  Very quietly he said, “I didn’t mean what I said.  I’m sorry mom.  I love you with all my heart.  You know that, right?  I never meant it.  I really didn’t”.  At that point I hugged him for what felt like a long time, and we had a calm conversation about what was troubling him.

Had I known at the time that his anger was probably a mental health issue, I probably would have taken him to the children’s hospital.

That situation happened more than once.  I can happily say, that each time it turned out the same.  Eventually he would come to me and apologize.  I would always make sure that if I was going to pick a battle with him, or any of my kids, it would be one that I could win.

I now know why that book only went to age 12.  Had I read any further, I’m not sure I could have made it as far as I have.  I don’t really think there would have been an alternative, but still, tell a parent about adolescence and “The Terrible Tweens?”  That would just be cruel!  Besides, the years are so unpredictable, there would be no way it could prepare you for everything.  The book would have hundreds of chapters, flow charts, foot notes, appendixes, and would just never end.  People would be laughing, crying at the same time, and the hair color industry would definitely boom because of the premature greying happening.

I have 2 teenagers of my own still, one from my fiancé,  and a an adult to get to 25 in one piece.  I’m not sure yet how it’s all going to happen, but I do know that we’ll get there.

Whatever is happening, don’t take it personally.  If we humble ourselves a little, and learn to say sorry, we can get through what we need to.  Pick the battles carefully and make sure they’re life lessons.  Leave the little stuff that doesn’t matter behind and own what you need to own – I know it means a lot to my kids when I do.  And don’t forget – it’s ok to ask for help

There is a new program in town.  So new, that there is actually very little information on it, so I figure considering my daughter has been one of the 12 kids currently accepted in to the program, I will write about it and let people know.

YCSP – Youth Community Support Program.  This is a program specifically made for kids in the system that need prolonged care, and haven’t had success being stabilized at any other program.

First, you start with assessments at ACH – Alberta Children’s hospital.  After that, if you haven’t stabilized and qualify, you can  potentially go towards ADTP – Adolescent Day Treatment Program.  This is a 3-4 month program aimed at helping kids 13 – 18 transition with support from a hospital situation to real life.  There are Board of Education teachers, and it runs the same way a school does except there are interactive therapy groups, private therapy, and psychiatrists.  There’s also a nursing staff.  Kids are drug checked regularly, and there’s a cook that makes breakfast and lunch for everyone there.  It fits 14 kids at a time, and generally doesn’t run during the summer months – at least kids don’t attend there during that time, but sometimes there is still private counseling available.  There is also the Eating Disorder Program that may be a good choice for some, but you can’t attend both ADTP and the EDP – you have to choose one.

Previously, if all of these programs don’t work, your child might just end up back at ACH, and then the process would start again.  Now, there is the new program.  12 kids can attend this program – 6 beds for those who aren’t ready to stay at home yet, and 6 part time spots for kids who need regular weekly support.

We have been in the system for a full 8 months now.  First ACH, then an assessment for the Eating Disorder Program.  We ended up going to ADTP, and yesterday, we had our intake appointment for YCSP.  It took about 90 minutes to fill out forms, go through legal jargin, and learn what we needed to get started.

I guess I should be thrilled that my daughter has been one of the first accepted in to this program, and apparently there is a massive waiting list, so I know I should be grateful, but I’m having a really hard time with the whole thing.  We are in to our third set of psychiatrists, psychologists, counselors, nurses, and teachers, and frankly I just feel really exhausted and discouraged.  I feel bad for the people out there that have to wait to get in, because unlike other programs, there is no limit to how long you can be in this program, but there is a limit to how many youth can go.

There are so many things I haven’t been able to say or share, so I know it would make more sense if I could, but getting in to everything again just makes me feel down.  When I came home from work today, I looked at her and apologized.  She looked at me with her big blue eyes, and said, “Why are you apologizing mom?”  I said to her, “I wish I could fix everything for you.  I wish I could give you your medication and everything would just melt away.  I wish I could erase the past and just create a new one.  I wish I could make things right. I wish we didn’t have to go through all of this again. I’m just so sorry I can’t fix all of this for you.”  “I know mom.  I wish that could happen.  I hate interactive therapy.  I don’t want to go to more groups.  I don’t want any of this.” “You know I can’t keep you home, don’t you?  You know I can’t say it’s over, because I don’t think you’re ready to be on your own yet.  I think you still need support.”  :”Yes, I know.”

It’s hard to look at your child and not be able to fix things.  There comes a point, when a large part of her recovery is up to her, and only time can help mend that.  She has to get past what has happened and find a reason to thrive in the future.  To make things more difficult, the psychiatrist she has really bonded with will not be allowed to treat her anymore, and I just can’t bring myself to tell her.  Tomorrow she will find that out, and I don’t want to even be around for the after math of that conversation.  She will be so tremendously disappointed, and so am I.

YCSP will accept her for 2 days a week, and the other 5 will be up to me to keep her on track.  While school is still in, which is 3 more weeks, we will have 3 more days of the week taken care of.  For the rest of the summer, well, I’m not quite sure yet.  I will have 3 weeks of vacation I’ve spread out over the 2.5 months till school starts in the fall again, upon which time she will keep attending YCSP and her regular high school the other 3 days of the week.  As for the rest of the time, I’m not sure.  I will have work to deal with, and will have to juggle the rest.  Thank goodness my work is so understanding.

For now, as my daughter says to me, “Mom, let’s save the worry for tomorrow”.

Smart kid

There is a pilot project running right now at a local high school in the town where I live. From Wednesday to Friday each week, there is a room called “The Chat Room” where kids with IPP’s or special coding, or even kids that just need safety can take alternative classes, take a break and unwind, get some food or a cup of tea, and escape from the stress they’re feeling.

I remember first hearing the terms “coding” and “IPP” when my middle son was in grade 2. He was the tiniest child in the school, had pop bottle bottom glasses since he was 8 months old, and had a bad speach issue. I spent hours every day at the table with him, teaching him how to speak, repeating vowels and consonants so he wouldnt have to be pulled fromantic class. The muscles in his cheeks and throat did not develop properly, and he couldn’t say r, l, k, s, w, t, and many other sounds. He basically sounded like he had peanut butter in his mouth. They always wanted to test him for different things and it got to the point that he didn’t even want to go to school. He was horribly bullied, until one day I pulled him out and made a change.

Once we were at the new school they encouraged me to have him tested to see where they could best help him succeed. I had never wanted my kids “coded” because I had learned that this would make you “the class idiot”. I thought they would have this horrible stigma attached to them for the rest of their lives. I was very wrong.

After agreeing and going through the process, I found eventually that he had markers for learning that were completely missing, and some that were off the charts. Over time, he was coded with a rare extreme OCD disorder, severe anxiety, and ADHD along with certain learning markers. Accommodations were put in place, and he started to succeed. Slowly but surely some of his challenges were used in his favor rather than against him, and the one child I thought wouldn’t make it graduated! Not only did he graduate, but he ended up graduating with the most credits any student had ever had.

For awhile I felt guilty that my own fear, and perhaps embarrassment at having a child with special needs held him back. He had no 3D vision (still doesnt), his eyes work independently, his speech was horrible, he was very tiny, and eventually he became very depressed and suicidal. His clothes got bigger as he got thinner and thinner, he never smiled, and just sat in the dark all the time. Once we got him the help he needed, he started to soar. That coding was a signal light to everyone he encountered and changed his life. He became strong, and was his own best advocate.

My daughter is now undergoing coding for an IPP as she enters high school. Should the government decide to keep this pilot program going and make it permanent, which I really hope they do, she will be able to use this room as a safe place when things start to unwind. She can take classes in a room with an essential oil diffuser going, with lava lamps and beautiful art on the walls. She can do her work in a protected environment with other kids that are struggling with life too. There is a window in the room, and on the other side you can see 40 or so students in a sterile white room, sitting at desks with computers. As I stood in The Chat Room, I felt in awe as to how things have changed. For a moment it actually felt like it was ok to be different than the norm.

I come from an age of corporal punishment in school, where “suck it up” was a common phrase, and when it was ok for a teacher to throw his chalk at you if you looked the wrong way.

The future is bright for our kids if programs like this stay in place. No kids are turned away, IPP or not. We need to be advocates for things like this. The teacher told me they had a strong feeling about who would want to use The Chat Room, and when it opened they were shocked to see kids they never would have expected, coming by and checking in.

It’s a different tomorrow out there than I’m used to, but in some ways that alone dispels the fears I have. My knowledge is based on the past, but what I’m learning about future possibilities is bright. Coming back to the system might not be quite so impossible.

We’re back, at least a little bit. And the future is bright.

I’m going to have to be quick with this blog, which might be a relief to some, because in 19 minutes we have to leave for my daughters first day back since the event.

We have no safety plan.

Never be fooled by someone suffering from mental health. There needs to be a safety plan. Picture the kiddie section of an amusement park. You see a small ferris wheel, little pink flying elephants, bumper cars, and a small rollercoaster. All of these rides can really represent many stages of the process, but the one that’s the most danger is…….yes, you guessed it. The roller coaster.

The kiddie roller coaster is probably representative of most of our lives. Some smaller gentle ups and downs, perhaps a sharp corner representing a few turn of events. Maybe one small difficult climb and then a quick swoosh down. Slightly horrifying but easily finished without too much harm.

And then there’s the grown up roller coaster. That big green monster that jolts you all over the place for what feels like forever. You go up then down, steep long climbs and then straight down, accelerating as your breakfast rises and hits you in the throat. At some points you even flip upside down, cursing the very moment you came to the park and crying out in anguish that you were even born. Eventually, you get to the end of the ride and see the operator with that big long control lever in his hand. Attempting telepathy, you try sending him messages to stop the ride and let you off, promising you won’t expel your insides till you’re clear of the venue, and then he looks right at you, and says “ONE MORE TIME!!” Every one else screams “YAAAAAAH”, and you close your eyes to pray for a quick and painless trip. You turn and look at the person next to you and say, “wake me when it’s over, I think I’m going to faint!”

That’s how I’m feeling right now. I’m not sure if we’re coasting towards the end, or getting ready for another round.

Safety plans are a must – every single day. We have been writing and rewriting, sometimes on actual paper, and sometimes in the air, but we’ve always had one. Because of the way this whole transition was rushed, the official safety plan hasn’t even been written and won’t be viewed or approved till tomorrow, one full day after. That’s 24 hours. 24 hours too long.

As we drive this morning, I will be trying, in the most delicate, non alarming, nonchalant way to create a safety plan for the day. December 9th started with a great morning and ended in near disaster. We’ve come a long way, but I’m not a fool. Things can turn in an instant.

I’m not done with this yet. Advocating for your child is exhausting but you can never let up. You must follow that gut instinct. If you feel something isn’t right, trust what you feel. Reach out. Insist that the help you need is provided.

The words to me last night after expressing my frustration were, “I’m sorry it’s gone this way and that you’ve been stressed. We hope you can make things as calm as possible in the morning.”

They haven’t heard the last of me yet. On the outside – cool as a cuke, but on the inside? Let’s just say there’s a whole lot that still needs to be said

Hello, Mom?”

“……..Hi!”

“Soooooo, I’m transitioning on Wednesday.”

Two more sleeps. This is the day I’ve been waiting for and wondering about for a very long time. Since December 9th actually. Two more sleeps till our current program at ADTP starts transitioning my daughter in to main stream public school. Even typing out those words makes me shake in my shoes. The last time we tried going back to school, I found myself standing by the river, wondering if I would ever see her again.

The ADTP program is a 3-4 month program, with intense private and group therapy, as well as private and family counseling. There is school work involved, and it’s run by both Alberta Health and the Calgary Board of Education, so they work hand in hand to try and catch up the main holes that have been missing in relationship to school work while treatment has happened. It has been 1 year and 3 months since my daughter was in school regularly. She only attended the first 2 weeks of this school year. Now, we will look at sending her from a classroom of 3 kids (ratio at ADTP is 1 to 3) to a school of 800. She will go back with an IPP, but will that be enough to accommodate her needs?

“What? This Wednesday? I thought we had discussed waiting a little bit longer? I need to prepare. I need to communicate with transportation, the high school, and…”

“Do you want to talk to my teacher? Maybe that would help?”

“Yes. Yes please. I think that would be a great idea”

“First, one more thing. Can I take the bus?”

“What? Really? The bus? Is that really a good idea?”

For the last 3 months, transportation has taken my daughter directly from the door of my work to the program, and then has picked her up and delivered her in to my view. Without fail, I have known where she is the entire time, and that has been a tremendous burden removed from my shoulders. She’s basically had her own private chauffeur, and now, she wants to ride a bus with 45 kids on it.

“Ok, let me talk to your teacher.”

“Hi. So we have a start date of this Wednesday.”

“Is there a reason why you made it earlier?”

“We thought that was the date set in the transition meeting.”

“No. You were supposed to get back to me after the new program met with you, and after we would decide the exact dates so I could arrange transportation, and time from work. I don’t feel good about just doing this without being prepared.”

“Oh, well you’ll have to talk to the counselor about that. In the meantime Wednesday is the day. So the plan will be all day, and then Thursday afternoon.”

If there is one thing that drives me bonkers, it’s lack of communication. During this entire process, there has been time and time again where communication has broken down, and I have been left not knowing what the real agenda is. I have made it very, very clear, over and over again, that I am an involved parent, and need to be in the loop with what is going on. A transition means so many different things and I really don’t think wanting to be engaged in the process makes me a control freak. It makes me someone who likes to be prepared.

We continued to discuss the plan, and the teacher assured me that I would be sent an email outlining a safety plan and details that were being discussed.

“Hi there, this is the Vice Principal at the new school. Is now a good time to talk?“

“Yes, it’s fine. Thanks for calling.”

“I found out news that your daughter will be joining us on Wednesday. We’re looking forward to having her.

“I don’t really know what to say. This is happening faster than I expected, so I’m still a little shocked.”

“I think the plan is just to have a calm, quiet day, and not overwhelm her with anything too much.”

“We haven’t even had a tour yet. She doesn’t even know where the safe spots are. She says she feels like just throwing herself in to it and seeing what happens. That really makes me uncomfortable.”

“Actually, that makes me really uncomfortable as well. I don’t think that’s a good idea. I think we need to have proper safety plans in place. I would prefer if you brought her to the school. She isn’t even in our system anymore. We had to transfer her to the CBE system, so you’ll have to re-enroll her. There will be a lot of forms to fill out”

“I just don’t know how this is going to work. How do we take a girl who can’t even motivate herself to walk up the stairs sometimes to do a whole day in a school? ”

“What is the thing that scares you the most?”

“I don’t know. I don’t even know if my fears are realistic. I don’t think she’s a runaway risk, however I never would have thought she was then either.”

“Does she have a phone?”

“Yes she does”

“What are her triggers.”

“I don’t even know. It could be anything. This is just so unknown. I can’t picture what this will be like. Do you have a nurse at the school?”

“What kind of nurse? Mental, or first aid?”

“First aid. What if she cuts and needs help?”

“Yes. We have people trained in first aid that could help.”

“What if she panics and leaves?”

“We will put a plan in place with her phone. How easy are you to reach?”

“I work 4 minutes away. I don’t want to wait 20 minutes this time before I’m even notified if something happens. She made it to the river last time.”

“I can assure you, we don’t want that to happen either.”

We continued to talk for a few more minutes, and left it at being cautiously optimistic for a trial day with plans in place.

Two more sleeps. I’m scared. Terrified actually. I don’t know what will happen. I don’t want to end up back at the hospital, or at the river for that matter. I don’t want to go through it all again. I don’t want her to cut or self harm because she can’t deal with the pressures of everyday life. I know sometimes I have a hard time dealing with every day life, and I haven’t gone through what she has.

At the end of the day, this is her battle, and I can only fight along side. It makes me feel helpless and wildly out of control. I really don’t like that feeling at all.

Two more sleeps.

Not to many months ago, one of my boys decided to get a tattoo.  Ever since he was younger he had been designing ideas for what would be his first permanent marking.  He would come home from school, covered in designs up his legs and arms, and my only thought other than potential blood poisoning from the ink and lack of complete school work was, “thank goodness they can’t do this on their own when they’re kids”.  Can you imagine?  If he would have been allowed to just go get anything done, (despite the money factor) he would have come home with all sorts of crazy stuff permanently etched in his skin.  He went to a concert once, and the artist signed his arm.  He begged and begged for me to let him have a tattoo over that signature on his arm, and wouldn’t even shower until I gave in.  Despite his stubbornness, I won that battle and we took a picture of the autographed arm right before he showered.

The 18th birthday came, and off he marched to the tattoo parlor, money and design in hand, ready to be inked. ” How hard could it be? ” The question he should of asked him self is “how painful will this be?“  He texted me a few times while I was at work, all excited.  It was the actual day of his birth, and he was fulfilling his dream.  Little did he know how much pain that dream would bring him.

It’s a very difficult thing to watch someone be in pain, even when it’s self inflicted.  It would be a lot easier to be detached and say “It’s your own fault”, or “You should have thought of that first”, but as an empathetic person, it’s pretty hard to watch someone suffer, let alone a mother watch her child suffer.  I came home from work, and there he was, sitting on the couch, holding back the tears.  I took one look at him and knew it was going to be a long night.  He hadn’t decided on the first one being a small symbol – he’d covered the entire calf on the back of his leg.  To make matters worse, a relative had called leaving a message on his phone that was upsetting, and when getting cream for his leg at the local grocery store, a secret shopper though he’d been shoplifting and tackled him in the parking lot, dragging him back in to the store.  (He ended up with an official apology from the market owner, a $25 gift certificate and a job after I was done complaining, but that’s a different story).

Seeing his face, I immediately went in to action.  I had to help.  First the pain killers – lets get on top of it. Next we talked about the phone call and the message, and I dispelled his thoughts of feeling guilty about not wanting to call that relative back.  Next, I let him rant about the grocery store incident.  I let him just go on till it was out of his system, and then went and found the cream he needed for his leg.  When I came home, I sat with him, had some dinner and just reminisced about the last 18 years and how special he is.  The next couple of days was hard for him, but he got through it.  I would have taken that pain for him if I could, but it was something he had to get through while I watched.

When my daughter first started having stomach pain, I figured it was just a regular stomach ache caused by constipation. Eventually as time passed on, the pain got worse and worse, bringing us to the emergency center 18 times in a span of 5 months.  She was treated with Acetaminophen, Ibuprofen, Naprosyn, Naproxen, Toradol, IV Toradol, Buscopan, Morphine, Demarol, and even Fentanol.  The Fentanol worked, but then I learned what it really is and insisted she never have it again.  Despite that, they gave it to her on a second occasion – 3 doses – and I was very upset.  She never had it again after that, but of course, it’s all she asked for. There was nothing else I could do to stop the pain.  I was so incredibly frustrated, desperate for anything that could help.  There were many nights I sat with her, massaging her legs and back, warming hot water bottles, covering her in blankets, and then massaging her legs again.  We would put on some kind of movie, and with the combination of all of it, she would eventually fall asleep, only to repeat things the next day.  The morning would start off at a 2 or 3 out of 10 on the pain scale, and as the day progressed, by night time we would be at and 8 or 9, and sometimes a 10.

One day, I was posting my frustration on Facebook, and an old friend of mine from high school, now in the US, messaged me about some alternative methods for dealing with pain using essential oils.  Quite truthfully, he could have said rub banana pudding all over her stomach and make her dance and I would have tried it.  I eventually met up with his mom, and purchased a very small bottle of peppermint oil.  Sure.  Why not?  It wasn’t going to hurt her.  We met up in a parking lot, and got the oil.  My daughter was in the car, crying from the pain.  I had her expose her abdomen and we rolled on some peppermint from this tiny bottle.  Within about 20 minutes, her pain had significantly subsided.  We were both stunned.  Perhaps this would be worth studying a little more.  (I did study more and came up with great info, but that will be saved for a different blog).

Months of counseling, a long hospital stay, and even more therapeutic work along with consistent use of  poly ethylene glycol (PEG), and  Peppermint Essential Oil (medicinal grade is the only one that worked well), helped her stomach pain subside. For months it was completely gone, and I can’t even begin to express my relief.  To not have to see the miserable pain in her face every day anymore was enough to make me twirl and dance and sing.

Pain and mental health really go hand in hand.  Feel sick, or in pain for any duration, and soon you feel frustrated.  Eventually you start feeling down, and hopelessness can set in.  Over time, depression sets in and you can’t see your way out of the fog.  I have come to learn through my daughter, that the best help I gave her through some of those darkest days was just sitting with her, and being there.  That was probably the hardest part for me, because I’m a do-er by nature – not a sitter.  A hug, reassurance, and just being there for someone can be the ultimate act of love.  We can’t necessarily rescue someone, but we can definitely be there to help them through the journey.

My daughters pain is back, and some days it’s not pretty.  I have refused trips to the hospital, and instead I run a hot bath, get out my oils, find a good movie, some cozy blankets, and some hot tea and we sit.  Sometimes we don’t talk and it’s just quiet, but she knows I’m there, and that’s what’s important. Don’t get me wrong, if it was a safety issue, we’d be back there in a flash.

I won’t lie.  My frustration and exhaustion are very close to the surface, especially when I thought we were past this, but I’m reminded that this is a journey, not a trip.  More research.  More listening.  More counseling, and Dr.’s and programs.  Our journey ahead might be long, so it’s a good thing that my well of love is so deep

I’d like to sit down and have a talk with the world. I’d make sure there were lots of comfy chairs, and tea and cookies so everyone would have a bit of a snack. Snacks always seem to make people feel better.

After everyone had tea, I would bring out blindfolds and have people make their way to a seat. No one would be allowed to see who or what they were sitting next to, and everyone would get to just talk. No questions could be asked about race or religion, and everyone would be given the same 3 questions to ask.

1. What do you value most in your life?
2. What is the most difficult thing you are facing right now?
3. How can I help you?

Imagine being blindfolded then sitting next to people you don’t know. Would you feel comfortable? Would you be scared? Would you be able to say something about the people around you without seeing them? Without knowing race, religion, body size, gender, or sexual orientation, would you be able to say something judgemental or would you have to start out kind?

My point is, and I’m going to be brief, is that when we live in a small box and don’t open our hearts up to possibilities, we rob ourselves and others of happiness and joy. Because we are taught to make judgements based on what we see at such and early age, it’s almost impossible not to form immediate prejudices. With a staggering statistic of approximately 3 seconds to decide that first impression, it feels like we just don’t stand a chance.

Imagine being able to have a relationship with anyone? I don’t mean a romantic relationship, I mean friend or business, even mild aquantance, without what you see as being “good” or “bad” interfering with your decision.

Why are we scared when we see tattoos and piercings? Why does a fat person gross you out? Why does another religion make you feel like you have to defend your own, rather than understand and be accepting of theirs? Why is someone a bad parent because their kids make stupid decisions without taking in to account consequences? Why does sexual orientation make you approachable or not?

Imagine if we could ask those 3 questions, without our own judgements getting in the way. Maybe we could all be friends.