routerecalculation

What kind of people suffer from mental health issues?  What do they look like?  What do they wear?  How do they act?  Would you recognize  someone who suffers from mental health issues?

Did you know 100% of people encounter or have experience with mental health issues every day?  That means everyone.  Everyone has been sad.  Everyone had been depressed, or anxious, or worried about something so much that they felt sick, or sweaty, and everyone at some point will either know someone or be the someone that questions their existence and struggles with that.

On Tuesday nights at the ACH, they have bingo for all of the patients that can come off ward, and that stay overnight.  Parents come, nurses, caregivers, etc. and sit with the kids while they play.  The prizes are amazing, and in the 1.5 hours they play, they manage to give almost every patient a prize.  Anyone can play, but only patients can win.  Every Tuesday night the mental health unit joins in the fun, but they’re usually late.  It always seems to take extra time to gather everyone up, and make the trek to the cafeteria.  The lady on the mic announces “Hey, lets welcome the mental health kids”.  It’s quite funny actually.  I’m not sure what the people expect to see, but the parents hold their kids a little closer, everyone turns and looks, and all of the kids come and join in.  I was joking with my daughter one night, and said the kids should drag their legs, drool, and start beating up on each other or screeching.  We had a good laugh about it.

I really think that is what people think.  People with mental health look strange or scary, are unpredictable, and you never know what they’re going to do.  On the contrary really.  People with mental health issues look just like you and me.  They are.  Just you. Just me.

The thing I admire a lot about the mental health kids is that they get to work really hard on discovering who they are.  They are the kids watching Dr. Who, coloring their hair bright colors, wearing teenage back packs with teddy bears, sporting super hero logos, painting their faces, doing a spontaneous dances, cos-playing and so much more.  Do you ever feel like some days you should just be wearing a cape?  I do.  I wonder what people would say if I did?  Truth be told, I’m chicken.  I know how harsh people and they’re judgements can be.  And then what?  Sadness.  Depression.  The inability to experience life as I want it to be.

There’s another person I admire – my fiancé.  He wears Mr. Potato Head t-shirts, and converse running shoes – a different color on each foot.  He breaks in to spontaneous dance in the middle of a subway station, just because a good song is playing.  He also wears a pin on his lapel each day, to support something he feels passionate about that day.  He loves with an open heart, and does not ever judge.  I wish we could all be like that.  Wear different colored shoes.  Sing happy songs.  Love passionately, without judgement.  Perhaps then there would not be any mental health issues at all, because we’d love each other so much.  Can you imagine a world like that?

1 week from now is our discharge date. A sobering thought in some ways, and yet the longer she stays in, the worse she gets. We’ve been given a date twice before, and each time it resulted in near disaster. Those trials led to a series of bad decisions that will forever be etched deep in my soul.

I remember having each one of my 3 children. I loved the baby stage so much. I loved holding thdm, snuggling up, rocking and singing them to sleep. If I didn’t want them to do something i just picked them up and changed directions. I never had to worry about them getting in to things as long as they were out of reach. They all loved playing outside but always stayed close. Taking care of them was pretty easy. The words “don’t touch” was all it took. Same baby, different circumstances.

I had a piano student once that was a mom of 3. She was tired and a little bitter, and when she met my kids she said to me, “Just wait till they’re older. It’s not so much fun then.” I’ve never forgotten those words I was so horrified that someone could speak so poorly of their children. It’s funny how we judge when we don’t know the whole story. She used her outside voice to express the pain she was feeling on the inside and I didn’t understand. I think I understand now a little of what she was saying. I have never felt resentful of having children, but I am guilty of muttering, “I’m too old for this s**t” in the middle of an escalation before.

As I look around my house, and the constant disaster it’s in I wonder to myself, “ How did things get this way? Is this all because of the divorce? I worked too much, wasn’t there enough. How in the world do I fix this? I hope it’s not too late. It just can’t be…….” Time to prepare for the return.

There’s no possible way to hide and remove every danger from your house. No way to get rid of every sharp or potentially sharp item, and every string or cord longer than 3″. I wish I could barricade doors, put in alarms, nanny cams, voice recorders, baby monitors, motion sensors, automatic locks, electronic property barriers………sounding paranoid? Not me, nope, lol! Reality is, there no way to get rid of it all, make the whole world safe until her brain develops enough to understand, we don’t always need a reason to be alive – we can create our own reason.

That’s what I’ve got to do. I’ve got to help her, we’ve got to help her create her own reason important enough to be here. She needs to believe.

How hard can it be?

As you get closer to discharge, the hospital will start trying more overnight passes, and try and get your child home safely. In our case it’s a little tricky, because my daughter has been there so long, she’s more institutionalized. She’s forgotten things like chores, washing dishes ( no dishwasher, so that means really, wash your dish!), sharing a bathroom and other shared social graces. The idea is get them home, do normal things, and see how they react. You get things set, perhaps plan a special meal, and fingers crossed, you might even forget there’s any issues.

A dear friend had made a special lunch for us. We stopped on the way home to pick it up, and I was truthfully super relieved not to have to worry about cooking when I got home. Now in a normal situation you would think nothing of jumping out of the car and running in somewhere with a teenager left to wait in the car, but in this case, that could be the difference between ……well let’s not go there. I took the small chance (building trust – tefrifying) and got the meal – it looked beautiful and I was so excited. When I got back to the car, I was told my phone rang twice. I looked at the missed call and it was the hospital. “Why would they be calling? I have her with me. Seriously?! Did they see me get out of the car? Am I being watched ?”

“Yes. I see. Ummm yes. Ok? Do we have to come back? OK then. I will in awhile. Yes, I understand. That’s not likely. I’ll let you know. Thankyou.”

Pretty obvious at that point there’s an issue. The nice day we’re having now has a hiccup. As if it wasn’t hard enough having an small escalation the night before, now we have to deal with something else.

Apparently, 1 in 3 kids is cutting, or has at least tried. Word on the unit was that my daughter had been sneaking in sharps, taping them to her body and then self harming on unit -probably at night, but most likely the night before. I now was stuck with the chore of questioning her about the whole situation and trying to find out if she was injured and needed care.

How do you tell if your child is cutting? It’s very hard because they’re sneaky creatures and very good at hiding. Are they wearing clothes that are loose fitting or long sleeves when they wouldn’t otherwise? Have you noticed the first aid kit out, if you have one? Have you noticed a request for pain killers or your child avoiding hugs or personal contact? These could all be signs that something suspicious is going on. Instead of bullying her with a bunch of questions I was very matter of fact. I then drove to Walmart and went to the first aid section. The look on her face was one of surorise, especially when I said to her “tell me what you need. If you won’t show me the wounds, at least tell me what you need to keep them from getting infected.” She was reluctant so I reached foe the alcohol swabs. “No, those hurt.” She reached for the gentle bandaid cleaning anti sceptic, some polysporin, and latex free bandaids. Once we got home, I let it go for awhile. Another call from the hospital, angry texts to me from her dad – seriously everyone, this is hard enough as it is – give me a chance already! At one point I thought we would be making a trip back, but each time she managed to use coping skills to recover, and she did. Listening to music, looking at pictures of puppies and kittens, talking with her brothers, having a snack – all distraction tools to move beyond the pain. The fact is that whatever had happened the day before was still with her, and the pain of that was real. Bed time comes along and it’s shower time – another trust building exercise. All went well but after was when I had chosen to talk. I needed to pick a moment away from anxiety that I could get real. The choice was given – “you want to build trust? Let me take care of the wounds, or at least see them so I can assess if further care is needed.” I don’t think I was very popular at that moment, but she reached out to me, and I did what a mom does. I stayed quiet and cleaned the wounds. Perhaps others would have scoled, shrieked, cried, been upset, but not me. No room for that here. This is one time to keep my emotions to myself and just deal with it. Bedtime. All is well. Late night check in – very scary. “ Dare I look? I’m sure she’s sleeping. What if she’s not? Nah, i have to trust. This is ok. Shes ok. What if……..?” Deep breath. Look around the corner – sound asleep. Whewf. We’re good. Trust is going g to be a huge difficult endeavor. Should I get a nanny cam? Baby monitors? Or do I just inch forward, blindly hoping for sucess. I don’t think there’s a right answer. The big thing here is building trust with eyes wide open, and hopefully not being caught off guard. Hopefully.

There is so much to write, and so much to tell, I’m just so tired I can’t remember what I want to say, so I’ll keep it short this time.

You don’t know what that person is going through behind the smile. You can’t imagine the calm face that lady is trying to keep while she hears news on the phone that she doesn’t want to know. How many people around who do you really know? Really. Do you have any clue what’s happening in their life?

The reason we don’t know is because sharing is a sign of weakness. We’re scared of judgement and disapproval. It’s just so easy to throw out a statement based on what we think, rather than what we know.

I won’t preach on. My current state in life does not make me a bad person or a bad parent – just a regular person trying to cope with an extraordinary situation .

Hug someone.

Love someone.

Encourage someone.

Bake something for someone.

Stop the judgement

There is so much to write, and so much to tell, I’m just so tired I can’t remember what I want to say, so I’ll keep it short this time.

You don’t know what that person is going through behind the smile. You can’t imagine the calm face that lady is trying to keep while she hears news on the phone that she doesn’t want to know. How many people around who do you really know? Really. Do you have any clue what’s happening in their life?

The reason we don’t know is because sharing is a sign of weakness. We’re scared of judgement and disapproval. It’s just so easy to throw out a statement based on what we think, rather than what we know.

I won’t preach on. My current state in life does not make me a bad person or a bad parent – just a regular person trying to cope with an extraordinary situation .

Hug someone.

Love someone.

Encourage someone.

Bake something for someone.

Stop the judgement

The decision had been made – ADTP (Adolescent Day Treatment Program) would be the way to.  The question was – when?  Our counselor was told the waiting list was 5 weeks.  A different counselor said it could be 2 weeks.  I remember the Dr. saying she had connections there….how do they make the decision anyways?  The reason we were going there was because my daughters diagnosis’ were so serious, going straight home with no support would be a bad choice.  We’d already spent 5 months in the hospital – if there’s a 5 month wait…….I didn’t even want to think…….

We got a call from the hospital about an appointment at ADTP the next week.  We would be meeting with one of the psychiatrists to see if she would be a fit for the program.  “Wait a minute, I thought it was already decided that she would be going there?”.  Once again, the disconnect between programs and communication was showing.  “Oh well,” I thought.  “At least we’re getting in the door”.  We were told the appointment would be an hour and 45 minutes, given instructions, and to make sure we didn’t miss.

I really didn’t know what to expect.  More counselors, psychiatrists.  Changing teams.  Change – never, ever an easy thing – especially with all of this.  The last time we had a change it did not go well at all.

The day came and I picked up my daughter at the hospital.  I was determined to be early, however it is never easy to get out of the ward.  You go over safety plans, sign a sign out sheet, talk to nurses……eventually you get out.  We got to location – a little strange but hey, we could do this.  We walked up to the door, and pressed the buzzer.  Shortly after heard a click, so I tried the door and it opened.  Once we got inside we didn’t know which way to go….up or down?  We decided up, walked through another door, and were asked to sit down and wait.  I had been so eager to be on time, that I had mistaken the appointment for 30 minutes earlier than it was, so now we had to sit and wait for 40 minutes.  That’s ok – we could wait.  Eventually a lady came out, and asked my daughter to go with her.  I got to sit and wait, longer.  I didn’t bring anything to do this time, so fortunately they had some magazines to look at, and I hadn’t used up all my data yet, so fb was always an option.

An hour and a half passed.  What could she be talking about?  What was she saying?  I thought we were through this already.  Eventually I was asked to come in the room.  They psychiatrist told me the words I wanted to hear.  “We need a 1% glimmer of hope from our patients.  I got that today, so we’ll take her in to the program”.  Music to my ears!!!  The next words were some of the most frightening I’ve heard for awhile. “Due to the severity of the issues we’re dealing with, you – we all, are going to have to be vigilant with the safety piece.”  Vigilant.  She was saying that until treatment is over – and beyond, we would not be able to take our eyes off her.  I don’t mean following around, watching everything she does, but it does mean never, ever being left alone.  “There may be more readmissions along the way, and we may have to stop and start, but we will hold a place for her.”  Readmissions?  We’re just starting to talk about the D word, and now I’m already planning to have to take her back?

When you take your child back, I’m told you have to do it from scratch.  All over again.  Emergency.  Waiting.  No guarantee on the same Dr., or even the same location.  ACH may not even be where she would be……………Oh well, I’m not going there.  I refuse to let my mind hover over something that isn’t even happening yet.  Let’s take this 1 step at a time.

Through this whole process, I have been thinking about relocating and trying to make sense of steps going forward.  One of the biggest things has been where do we live?  Seems to make sense that we should probably move to the city.  Closer to hospitals, closer to programs,  closer to my fiancé, closer to my family for support – just seems to make sense.  With one word that all changed.  Vigilance.  Where we live, it’s pretty hard to get lost.  There aren’t a whole lot of places to go.  No trains, busses, no public transportation, and the hills around the town are too exhausting and time consuming to climb.  At the very least, they’d take time to get past if you really wanted to get somewhere.  How easy would it be to get lost in the city?  I can’t even imagine going through what we have in a large city.  I would have had no idea of where to look. I have seen first hand, how effective our search and rescue is when called in to action.

Vigilance.  Like having a new baby.  So many things to think about.

The best thing is that there is support out there, and fantastic programs available.  I’ve even heard of new ones that are being created right now that are even more specialized.  Listen to the professionals, take time to think, and then follow your gut.  I don’t think we give ourselves enough credit, or else get just too tired to figure things out.  Listen to your heart.  You’ll know what to do.

Here is a typical example of one of my days since this whole ordeal began:

0400 – Can’t sleep.  House feels weird and brain won’t stop

0600 – Get up and get ready for work

0700 – Work – a few hours till my break

0930 – Hospital calling – it’s my daughter – (usually a good sign if it’s her)

0945 – Break over – work again

1300 – Lunch break / Counselor from hospital calls.  Update on progress or lack there of

1330 – Work again – pray phone doesn’t ring – hate the afternoon calls.

1500 – break – check emails/ phone messages.  Call hospital.  Why?

1630 – work done – stay longer and get extra stuff done

1800 – head to hospital for a visit or head home…….or stay and work some more.

2000 – call my sweetie and hope he’s able to chat

2100 – dinner.  Talk with hospital.  Update from my daughter and nurse.  Discuss any plans/appts for the week. If I’m not at home already, head home

2200 – laundry, scan fb, dishes (yeah right), answer emails, plan the next day

2230 – son home from work – chat for a bit – pray no call from hospital

2300 – accidentally doze off in my chair

2330ish – head to bed.

When I look at it, it sounds like just another day.  Mix in there calls from psychiatrists, extra clinics, nurses asking questions, escalations, consultations on medication and treatments,

Things have changed a bit now.  We’re working on the new program, and I have to do the driving at first, so we could add in a trip to the city and back in the morning and late afternoon.  Family counseling.  Group counseling.  Trips back and forth to ACH. We have some weird stuff happening with my daughters feet now too, and that means trying to get some attention from a different Dr., which can be like pulling chickens teethe.  Mental note to self – call hospital again in the am and ask for the consult again.

This is a little of what you will go through while you’re engaged with the Mental Health Unit.  How much or how little you’re involved is up to you, but I will tell you, the more you engage in the treatment, the more you will learn.  There is just so much to learn.

Don’t give up.  Things will get better.  Reach out for help.

The week after my daughter was admitted to hospital, I decided I needed to talk to someone, so I found a local counselor that I could go talk to.  I think the first session I spent about 2 hours there, crying my eyes out on her couch in dismay.  There were 2 main things she said to me that stuck in my head: 1.  Follow your mother instinct and do what your gut tells you to do, and 2. reach out for help to your friends and take care of yourself.  I took that first statement very seriously.  I felt I needed to be there at the hospital every for support  to show I was there for her, so I would go every single day after work, on days that I didn’t work, and would spend all my time there till 9 pm every night.  I’m pretty sure my boys forgot who I was during that time.  As the treatments strategies changed, I went whenever I was allowed and always made sure that I was flexible to be there.  Pretty much everything was taking second seat.

I went and saw the counselor again one, maybe two more times, and then just ran out of time each week to go anymore.  I was working, trying to spend time where I could with my boys, working more, and spending the rest of my time at the hospital.  I hardly saw my fiancé, and our plans pretty much got put on hold because of everything that was happening.  It was life was just humming along and then everything came to a screeching halt.  For each of those subsequent visits the counselor asked me what was I doing for myself, and who had I asked for help.  I told her I asked my dad to cook something for me (lasagna), and I asked a friend of mine who’s a foot care specialist for a free treatment because I couldn’t afford it.  That was huge.  2 big asks – I thought I was doing pretty good.  I didn’t think I deserved to be goaded in to more, after all, I’m a giver, not a taker.

I have always found great joy in giving, whether it be my time, an actual gift, a donation, or even just a smile.  Giving brings me great joy.  Receiving has never been easy for me.  My mom always told me that if you don’t receive graciously, you rob someone else of their blessing.  I’m super great at giving and telling people they’ll rob me of my blessing if they don’t receive (*chuckle*).  They usually roll their eyes at me, and then on we go.

Part of having a child at ADTP (Adolescent Day Treatment Program) is attending the mandatory Caregiver Support Group.  It’s a session only for the parents or caregivers intended on helping with the things we’re dealing with through this mental health journey.  Our first session was this week.  It was incredibly awkward, sitting in a room with a lot of parents, and my x, talking about our feelings, and learning about some of the things they teach our kids.   I sat and listened to the other parents speak, and if they’d done their homework from the week before.  What was their home work?  They were to reach out to a friend, and ask for help.  Almost every one of the parents in the room talked about how incredibly hard it was to do, and about half of the parents didn’t do it at all.  The new parents had to share a little, and speak about what help we’ve asked for along the way.  Not one of us had much to share.

I have received help along the way.  Two friends sent me a small sum of money, allowing me to pay for a parking pass, and also to pay for a new sticker for my license plate so I could continue to drive.  That $75 was a gift out of the blue that I was incredibly humbled to accept.  Someone at Christmas anonymously bought me a new stove after they found out I hadn’t had one since May of last  year.  I had spent so much money on medication, treatments, and everything else that I couldn’t afford a new one.  I cried so hard I was speechless.  An anonymous family heard that we were struggling and bought some gifts for my kids and delivered a turkey, also at Christmas.  Little did they know I hadn’t bought a single gift – I had no funds to do so.  I still don’t know who those people were – and was tremendously blessed by them.

The question was still looming.  Who, have you actually asked for help?  Any kind of help.  A walk, a meal, someone to watch the kids while you take a break (not applicable in my case), a massage, coffee, parking passes, lunch, help around the house.. anything.  Who have you actually asked – and mom doesn’t count?  I couldn’t answer.  I don’t ask for help – just really not good at it.  It makes me feel weak, needy and actually makes me feel horribly guilty.  Plus, then I have to talk, and explain, and I’m just far too tired to do either.  I’ve been told so many times by people in my life, that if I need any help, just ask – and yet I truly wouldn’t really even know what to ask for.  I’m a strong adult.  God gave me hands, feet, a brain – I should be able to do this.  There are people far worse off than I that need help far more than I, and I should probably be helping them.

At the end of the group, we were given home work.  First, for the newbies – ask for help with something.  Secondly, chose a self care activity.  The second is easy.  I just so happen to have booked the next 10 days off for vacation (my boss made me but it still counts). I ordered a massage gift certificate with my airmiles, and I plan to take it.  (There’s about 100 things on the list we can choose from).  I am going to go to a movie – at some point.  I’m going to bake something – and not burn it. So there – that’s 4 things  – and all I have to do is complete them.  My boss forbid me to walk through the doors of my store over the next 10 days – so that shouldn’t be hard.  All I have to do is call on the certificate – should be easy.  I have a free movie ticket I’ve been saving – piece of cake!  Baking – that shouldn’t be too hard – I have 3 bananas turning black on my counter – just got to do it.

That brings me back to my first bit of homework.  How do I ask for help?  What do I even ask for?  What would you ask for – if you were in my place?

Part of this whole crazy process is the pleasure of dealing with some really great professionals. Our team, for the most part, has been really fantastic. They will engage with me as much, or as little as I want. If I show the willingness to learn and engage, they do their best to communicate and teach.

Recently our psychiatrist got a new resident. I realize that the ACH is a teaching hospital, but changing teams along the way can be very hard, and in our case, almost disastrous.

I am not an expert in many things. My education is music, and most recently coffee. I work in the service industry, so I deal with many different kinds of people all day long. I learned when I was young that communication was important, but have realized even more in my career that it is essential for success.

Now I’m not the kind of person to cause a rucus. I’m pretty reasonable and fairly easy going. I’m not a scholar, and school wasn’t my strong point, but I don’t think that should really matter. Treat others the way you want to be treated. Love one another. Words im passionate about. I have taught my children to act that way, my employees, and that’s how I act. HOWEVER, if you want to ruffle my feathers, talk to me like I’m stupid, or treat me like I’m dumb. Go ahead. I dare you. The result isn’t going to be good for anyone – especially if one of my cubs is involved. The mother bear will rise and show her teeth.

When my daughter was first admitted, we talked about depression medication and that it would be necessary. We were given 2 options (sort of anyways, we were told about 2 different kinds), Prozac and Zoloft. Both have positives and both have risky side effects. One side effect is increased suicidal thoughts. This is terrifying, especially when you’re dealing with that already. Make it worse? Really?

I wanted to go with the Zoloft. One of my boys has had great success with it, and I used it for post partum depression. The Dr considered that but decided Prozac was the way to go, so we agreed, listened to the risks, signed the forms and forward we went.

As time went forward we slowly saw a small brightening of her mood. Within a week we had an escalation, then another, and another. They decided to add on a drug called Syraquil. It makes you drowsy, which could slow down the suicidal thoughts and increase appetite, which in this case would be good. At first it knocked her out and visits were like seeing a zombie. She said she was so tired that she couldn’t do anything if she wanted to. As she continued to get accustomed to it, they increased the dose. Eventually it wasn’t working enough, so they asked if they could add a small morning dose to ease the morning anxiety. Once again, we agreed. That one wasn’t so easy – took some convincing to get my X to agree but I felt it was ok.

Things seemed to improve slightly, but we were now at a large dose of the Prozac and 2 different doses of syraquil, yet the improvements didn’t seem big enough.

Along the way my X was pushing for shock therapy treatments. He wanted her chipped (still does), and would always be disagreeable to increases. They have to have approval from both parents, so sometimes that is good, and sometimes more difficult.

After 3 months of being stuck, we talked and requested a medication change, with the understanding that she would remain in hospital till the change was completed and she was stable. Within days I noticed a change, and the Dr agreed, so we decided to continue forward, now on the Zoloft. We made a plan, a solid plan, and were going to stick to it:

Change meds
Stabilize meds
Get in to ADTP
Transition from ACH to ADTP
D (discharge)
HOME!!!

Seemed pretty clear to me, to the counselor, to the psychiatrist, but not to the resident. The problem came in when the Dr. (Psychiatrist ) went on a holiday for 2 weeks and left the resident in charge. Now remember, parents always have to give approval for starting, stopping or changing medication.

Problem 1.
The resident was having a session, and told my daughter that she was just looking for attention, and needed to get with the program. If she didn’t, she would get transfered to a facility and be held for 5 years until she was 18. Distorted thinking or not, this sent her in to a tail spin. When I went in to visit, she was beside herself thinking I was going to have her locked up for 5 years. I was horrified, talked to nurses and they had no clue of any facility like that existing. The next day I called the resident to discuss the situation, and where this facility is, and what on earth he was talking about. Remember how I said I don’t like being made to feel stupid? The mama bear appeared! I was so upset by his condescending, disrespectful tone to me. I couldn’t shake it – and I couldn’t let it go. All he did was side step, and speak to me like I had no idea about anything. I called our counselor, who gave me the head Dr’s direct number and registered an official complaint.

2. D
We don’t say the D word, because every time we do bad things happen. After that session, the resident decided they may as well just send my daughter home. “SAY WHAT?!” That wasn’t the plan. I called again, and he said he saw no reason to keep her there. Again, I called and complained. My words were heard and rhe plan would continue.

3. Medication change
The resident called me and said he’d like to boost the syraquil to a larger morning dose. I guess he figured if he kept her tired enough, she wouldn’t do anything. The plan was to increase the zoloft, not the syraquil. I asked why the change and he couldn’t give me a reason. He didn’t call her dad for approval, and went ahead and doubled it. After 2 days I found out and called again. This time I asked to speak to the head honcho to find out why dope her in to exhaustion instead of treating the depression? At the end of the conversation we couldn’t agree, so we agreed to disagree. I asked for the increase to stop, and for no changes to be made till OUR Dr returned and we could discuss the plan again. Do not pass go and do not collect $200.00!

Troubled with all of this, I called our counselor and stressed my concerns. “I’m no Dr and I’m pretty sure he’s not a Coffee Master. I don’t trivialize him when he doesn’t know what’s in his cup. I expect the same treatment back”. They got the point.

You have the right to know what’s going on with your child and what course of action is being taken. Don’t be afraid to ask questions and don’t take everything as gospel. Have conversations, stay in touch. Call for updates, request face to face meetings and if need be, go a step higher.

They know me well at ACH. I wave to cleaning ladies, smile at porters. Security nods their heads, and the cafeteria lady knows I’m just getting hot water – same as always. The angry parking lady sees me pass her almost every day. The nurses, and there are many of them, pretty much have a nick name for me now they’ve seen me so often. They drink my coffee, have donations in their craft room from my company, and even occasionally get a batch of Dr Who cookies or muffins to munch on during the night shift.

Stay in touch. Do your due diligence. Knowledge is power – be proactive, not reactive. Most of all, be respectful. It takes a team to make this all work.

We have a plan. Small detours happen, but our goal is in sight.

Get help. Reach out. You can do this.