Something verging on normal

My workload did not diminish in the run up to Christmas, but Emily's symptoms did, or certainly appeared to.  She continued to be excited about the surprises in store for her and her mood seemed, on the whole, good.  My Mother and I attended the school fair arranged by the unit. I shopped for last minute presents and food.  It was a reasonably normal but hectic time.

In addition to the bought presents I had decided to make something for both of my children.  Normally at this time of year I would have been busy making arty items for sale at Christmas events.  Sadly, or maybe not so sadly, these are now a thing of the past.  My crafty side was still looking for an outlet and making something for a specific person is much nicer. For Emily, I wanted to use her love of words to create something meaningful, uplifting and 'teenagery'.

This is what I came up with. the size is A3.  In the centre I have drawn and coloured a heart in pastels.  Her name goes across the middle (sadly omitted for the blog).  Along one side of the heart is "Sign your name across our hearts"  and all around the edge are references to the roles she plays and the names she is known by; Daughter, friend, cousin etc.

On Christmas morning I gave it to her last.  She told me receiving this and some chocolate would have been all she needed for Christmas, she loved it so much.

For my son, even though he is 12, loves teddies and cuddly things to take to bed.  Due to illness in the week before Christmas, I didn't have as much time as I would have liked.  So this little guy (excuse the bad photo, my son took it on his phone!) was a bit of a rush job without the time for a pattern!

I called him Mr Wonky and my son loves him.

There have been times over the festive period when things have not gone to plan, we have fallen out, the kids have been yelling at each other, or we have actually been bored.  There have also been times when my own depression has surfaced to such an extent I didn't know if I could keep going.

Despite this, after cooking a Christmas Day meal, sitting down with my husband, children and parents I was so very thankful.  Thankful that we were all together, that for the moment both my kids were behaving as, well, kids.  Grumpy and stroppy at times, but normal, something which has been lacking for some time.

I have no doubt as the school visits start to loom again we will see a return of some of the symptoms and worries.  I can see it creeping in now, but I will be forever grateful that the festive period was full of love and something verging on normal.

One more thing overcome

Family therapy this week was once again useful.  We started without Emily and in addition to the therapist had her main nurse, Tia in the room with us.  Tia is the one person who seems to hold the mini team together.  The problems we have experienced are in part due to her recent leave and extended period of sickness.  Tia knew what I'd said at the review and she was so apologetic that the original plan had not been followed.  I told her that it wasn't her fault, it wasn't her sole responsibility.  I have nothing bad to say about her.  She is the only one who calls me with updates and suggestions. Unfortunately, when she is not there, no one else picks up what she does for us.

I went over a few of my observations about Emily's behaviour at home.  There are times, I feel, that she is trying to get my attention.  One of my pet hates is the leg shaking.  We are all in agreement that this is not an involuntary reaction to stress.  To be honest it drives me to distraction.  I have now taken to leaving the room. To stay would make the chances of me saying something unkind highly probable.  Interesting, when I've done this, the behaviour has stopped.

I'd also noticed an increase in nightly toilet trips.  Emily insists she can't help it, she needs to keep going.  We'd tried to talk about it, she fears she may wet the bed.  I told her that she hasn't wet the bed since she was a small child and even if she did have an accident, no one would be cross.

When Emily finally joined our session the therapist started to explore some of the observed behaviour.  Whilst it may be upsetting for her it is important that it is confronted.  To ignore it is not helpful.  By talking about it, the staff were able to suggest that Emily has some CBT sessions focussed around some of her thought processes.

On Friday morning I took Emily to her mainstream school, we met an outreach worker, a school house manager and two students.  It was difficult and strained.  We had a walk around as if Emily was completely new.  The two girls chosen to meet her seemed nice.  The trouble was that Emily was looking at her feet, she hardly spoke and her eye contact was non existent.  The outreach worker and I chatted to the girls, what were their favourite lessons, how close to school did they live?  We worked quite well together, keeping it light and trying to include Emily and encourage her to speak.  We didn't really succeed.

On the face of it, you could be forgiven for thinking the visit was a waste and didn't go that well.  But, when I consider her reaction to the last visit, this can only be seen as a success, well at least an improvement.  She didn't get upset and angry, she didn't 'freak out'.  I told her she should be proud.  She'd gone in, stayed calm and made it through.

The outreach worker will be calling me next week for the next visit.  We are both thinking that an actual lesson may benefit, Emily would have something to focus on and she wouldn't need to make small talk.

I asked Emily if she'd like to come into the city centre at the weekend to pick up some panto tickets I'd reserved.  She shook her head, no way.  No way was she going to a busy town or going on a bus.

This morning  I took her up to the local shops for her hairdressers appointment.  We'd talked over options and she decided to go from mid length layers to a blunt bob.  The way I see it, if you have a nice haircut, clothes you feel comfortable in and your spots covered up, you can conquer anything.  I hoped I was right as I watched as the lengths of hair fall to the salon floor.

As we walked home, she swished her locks and kept touching them, laughing at how much shorter it was.  Now I turned my attention to her face.  She is such a pretty girl, but has terrible spots.  I think that's one of the reasons her head always points to the floor.  I talked to her about confidence.  I do worry that the kids at school will see the spots and it will be another barrier for her to overcome.  So I asked her to bring me the contents of her make up bag.  They were pitiful.

I took a chance and offered her a deal.  If you come to town on the bus, I'll get you a few bits of new make up.  I could see the fight she was having with herself, fear of the bus, of the busy town centre, versus NEW MAKE UP bought with someone else's money. 

A few hours later we sat at the front of the bus on the top deck.  We laughed at what we could see from our vantage point.  She was calm all the way, her leg didn't shake once.  Though town was a little busy, she managed, we picked make up, got the panto tickets and came home.  Emily said she couldn't believe she'd done it.  Such an everyday task to so many of us, had been a huge hurdle to her.  One more thing overcome.

Keep talking

By the weekend things had improved.  The real story was that when Emily went to visit mainstream school, they were unprepared.  They asked her questions, understandably.  When was she coming back?  Was she coming back next week?? Half days, full days?? Emily felt under terrible pressure.  The Unit had, unfortunately, not really had a conversation with school and as a result, the visit went badly.

We talked things over while we sat and wrapped Christmas presents.  Emily has no real 'wants' this year.  In a way that's been nice.  I've gone out and been able to look for things that she might like.  As a result she is actually looking forward to Christmas, lunch at home with her family and surprises under the tree.  This is an achievement in itself.  Emily looking forward to anything.  We are not a religious family, but for us Christmas is a time when the family comes together and, amongst other things, share thoughtful gifts, gifts that show how much we care.

Last week we had another review meeting.  Very few people attended this time.  I made no attempt to hide my feelings.  It was me who had instigated reduced residential attendance to aid Emily's transition to day attender, the unit had not.  Not only this, but the school visits during the last six weeks had been a total of one, when there should have been several.  I expressed my 'disappointment', which was met with embarrassment.  There are so many good staff in this place, but co-ordination and communication continue to let us down.

I am hoping we are now back on track and things will happen.  Emily continues to have ups and downs.  Ups show me the old Emily, downs show me a frightened child shaking with fear.

And me?  I have taken the step of weighing myself.  I have put 2 stone on in 4 months.  I am ashamed. Still, I am also determined to do something,  My low mood, and attempts to cope with Emily, have lead to alcohol and comfort food.  I can not hate myself for trying to find a way to cope, to feel just a small amount better.  No, in contrast, what I can do is say 'enough!'.  I no longer fit in any of my clothes, the time has come to take action.  Gone is the junk food, 'in' is the low fat, low carb eating regime. (I will not say diet)  Small positive changes can make a big impact.  I hope I can keep it up.

Tonight Emily asked to talk to me,  she was upset, worrying about school.  We talked for a while, thinking of real things we could do, strategies we could put in place.  Emily's concerns are around more school visits.  I told her that it was no use looking at the past, we can only affect the future. We need to look at her concerns and work out what solutions may be available to potential problems.

My life is so up and down and so is Emily's, but while ever we can keep talking we have a chance.

Tired and unhappy

I caught a glimpse of myself in the mirror this evening.  The sallow skin, dark circles around the eyes, the down turned mouth, but worst of all were my eyes themselves. They are so full of sadness or maybe, dare I say it, hopelessness.  The two things that give me some respite are also the things that will be my undoing.  Food and alcohol.  My weight is increasing at an alarming rate and I can not spend an evening without a drink.  I am ashamed of myself, ashamed of what I have become.

Every time we have a set back, I ask myself how much longer I can carry on.  I even found my inner voice recently saying, 'get through Christmas and then you can go'. But I can't go, there are too many people who would be left behind and they would be hurting.  My Husband, my Son, my Mum and Dad, maybe even my Daughter, but at the moment I think she is so lost in herself, she wouldn't notice.

From days of seeing the old Emily starting to emerge, the slope has been very slippery indeed.  She has started to self harm again and she claims to have tried to hang herself in her bedroom last weekend. I say claims, because whilst she gave me a detailed account of her actions (while her grandparents were visiting) I heard no noises and there were no marks on her neck.  I hate myself for thinking she is lying, but I can not see that she is telling the truth.

Once again I find myself feeling like there is an alien in my house.  This is not my daughter. 

Today she finally had a first visit back to mainstream school.  She went with someone from the Unit and as it was a teacher training day, there were no children in school. The idea was a relaxed first visit to speak to the adults who would support her transition.

When I collected her this evening for her regular 'Wednesday night at home'  I was looking forward to hearing how school had gone.  I asked the question in the car.  I was told she had 'freaked out' and 'had to be taken back to the unit'.  I asked what could freak her out about a school with no children? Emily could not say.  I asked her, "So what happens next?"  Emily said she would try again and if she freaked out again that would be it, she wouldn't be going back to the school.

Whatever was left of my sanity now left me.  I couldn't stop myself from shouting out how she damn well would be going back, it was a fantastic school and I had fought to get her into it.  What on earth did she think were the alternatives??

When we arrived home, she went into the back room on her own, with Dvd's on the TV and her laptop for company.  I spent a couple of hours in my bedroom.  I noticed that my husband looked tired and unhappy and all I wanted to do was have a drink. To blot out the crap.

Emily and I have not really spoken since.  She asked for, and received, a hug before going to bed and said goodnight, but that is it.  I have nothing left to give.  Every bit of strength I had has left me. 

I am so tired and so unhappy.  I want to run away and leave all this behind, but there is a little boy who still loves me.  And yes, I know its likely my girl still loves me too, but right now, right at this very moment, it is incredibly difficult to love her back.

Phoenix rising?

We did talk that evening.  I was able to set aside all the childish parts of me that wanted to stamp their feet.  I talked to Emily about how our relationship had changed and that I was sorry if I didn't always understand or do the right thing.  We cleared the air and it was worth it.  That would be my one piece of advice to anyone with teenagers,  talk to them and make sure you listen.  You don't always have to have the answers.

Since that weekend there has been a noticeable change in Emily.  She had side effects with Fluoxetine (prozac) and is now taking something different.  I'm not sure if its the new medication or the work the unit do with her, or in fact a combination, but there has been an improvement.

After weeks of having cut off her father, she called him and arranged to go to a community bonfire.  I had mixed emotions.  Part of me was pleased that she had the confidence to venture out.  The other part of me was resentful.  Why did she not agree to go out with me?  How come he was forgiven all of a sudden. Once again, I set my feelings aside.

On the Sunday we managed a family outing to a local park and small animal centre. Not much, but it was nice to be out as a family. My Son is so desperate to do something at weekends that even these small outings placate him.

This last weekend Emily was so animated.  Laughing one moment and a stroppy teenager the next.  I didn't mind the stroppy teenager.  After all that's just normal.  When we talked she told me she was no longer interested in hurting herself and she was looking forward to Christmas.  We went shopping together and she enjoyed looking for presents for people.

She is unfortunate to suffer from very greasy hair which, as she has got older, has changed from a lovely blonde to a dark mousey colour.  I offered to add some highlights.  Emily decided on a full head of blonde.  The transformation was instant and I don't mean the colour.  Her head was held higher and she actually admired herself in the mirror.

The following day she wore make-up, the first time since my wedding day.  With the hair and the make-up came a confidence that had lain dormant for too long.

Was it really possible the phoenix was rising?

Time to talk

When I went to visit Emily on Tuesday last week, she was disinterested and standoffish.  I can't say that I behaved much better.  She couldn't wait for us to go and, I too, took no pleasure in being there.

Due to work commitments, our family therapy session had been cancelled, but the therapist was still on the unit at visiting time.  One word I will use about the staff is commitment.  It was 8pm and I knew she'd been there from around 9.30am..

After our meeting with Emily, our Family Therapist asked how our meeting had gone, she could sense from my response that it could have been better.  Taking my husband and I into an office she asked more questions.  She then shared with us some comments Emily had made in individual therapy the day before.  She had said that we did not always feed her properly and that she didn't always have clean clothes.

My first reaction was anger.  The Therapist made it clear that no one on the unit believed what Emily had said.  They could all see that she was well fed and clean and tidy.  That didn't stop my anger, but by the end of the meeting it had turned to sadness.  I had always prided myself on the relationship I had with my daughter.  We could talk openly about anything and even more important, we were both truthful and honest. This no longer applied and it was this that hurt the most.  I was not used to a daughter who lied and could not be trusted.

Even so I sent her a message by text on the Wednesday, Halloween, to say I hope she enjoyed her party.  I received no response.

A nurse called me at work on Thursday.  Emily was coming home that day, being picked up by my parents at 4pm.  The nurse explained that Emily was upset that I didn't believe her when she said things and that I didn't listen. The nurse was kind and accepted that I was in a difficult position.  I drove home arguing with myself.  I wanted to be childish, ignore her, be nasty, shout at her.  I came to the conclusion that that was what she was after.  That would give her a reason to feel persecuted and unloved and she was neither. The battle in my head continued with a voice saying over and over 'you are the adult she is the child'.  By the time I arrived home I was ready to talk.

I'm supposed to be her mum

Through talking to therapists and observing behaviour, it is becoming more and more apparent that Emily is displaying some symptoms which may not be her own.  One therapist suggested that she was 'collecting' symptoms from other young people on the ward.  I am inclined to agree.  Sometimes things just don't fit, they don't feel right.  I'm not saying my daughter isn't ill, but I do feel her reluctance to rejoin the real world is making her seek out ways to extend her stay in the unit.

I'm told she has 'demonised' her father in therapy sessions yet last weekend, when he came to the house to see my son, she bounded in to him like an excited puppy. 

After a weekend where I could seen a good amount of the 'old' Emily having a relaxed time, she informed me right at the end that the whole weekend had been terrible.  The house had been full of people and animals that only she can see.  It's hard.  If she had seen them, why did she not say at the time or get upset?  Why leave it until her last few hours in the house?  I just don't understand and neither do the therapists.

I'm told I need to be stronger with her.  That maybe she is trying to pull my strings.  That she needs to realise that her symptoms are ones of depression and anxiety and to conquer them she needs to do some work.

They are so concerned about the 'collected' symptoms that the last review meeting recommended that her nights on the unit were reduced gradually to get her back to a day attender.  They also want to get her integrated back into her mainstream school.  I know this will be hard for her, but she is very lucky that the school will accommodate her in a small specialist unit until such time as she can re-join the main classes.  In my mind this is what she needs. It will give her back some purpose, a reason to get up.

This weekend, she was totally engrossed in drawing.  We managed a couple of walks during the weekend and to be honest I thought how much like a normal stroppy teen she was, laughing one minute and arguing with her brother the next.  Then it gets to 9pm on the Sunday again and she is in her room.  When I go in to see her, her eyes are angry and wet with tears.  She has once more written "I want to die" on her arm.  I challenge her. She shouts nastily at me, "you don't understand" "you don't believe me" "I've had a terrible weekend" "it's been horrible".  I challenge again.  She may be feeling bad now but it has not been the whole weekend. I remind her of all the things she has done and the times when she has seemed like a normal girl. I tell her she should be proud of her achievements.  She can not see it, she doesn't want to. 

She told me she wanted to ring the unit.  It is a suggestion they made if she wanted to hurt herself.  I leave her room and give her privacy.

Five minutes later the phone rings.  One of the nurses tells me how upset Emily is and that she has tied something around her neck to hang herself.  I go to Emily's room, there is nothing around her neck, nor are there any marks. The nurse is still on the phone and then says that Emily is upset that I don't believe her and they tell me I shouldn't leave her on her own.  Why is this happening again?  I ask her and she just shouts at me.  I make her come downstairs.  The tv is off and we sit in silence.  I have nothing left to say.  It feels like I am being punished.

She asks to go in the shower.  I ask her for assurance that she will not hurt herself.  When she returns from the shower it is like she's changed again.  The atmosphere is frosty between us, but it is clear that she is feeling calm and ready for bed.

I am so frustrated.  I admitted to my husband this evening that I don't know this girl any more.  I feel like she is playing some game, but I don't know the rules. But its more than that because now I am so terribly ashamed to realised that I don't like her and I don't like how she is hurting me and the other members of my family.

I'm supposed to be her mum, but I'm not sure I'm acting like one