Moving on…

I feel we have reached a new place in our world.  We still have moments of darkness and anger, fuelled by anxiety and misunderstanding of the world and it’s people, but they seem to be fewer and last longer.

Since our child decided to be public about being trans-gender, she seems to be better able to cope with life. The problems are less insurmountable, the dramas are shorter-lived. She is just happier.

Next step is seeing a counsellor to confirm gender-dysphoria, and then an endocrinologist for puberty blockers.  A whole new world awaits! Always learning 🙂

 

The black hole

There are days when I really do wonder how I’m going to keep going.  Days when I think I would actually like to run away and leave it all behind.  Luckily sensible thought holds strong and I don’t run away.  I somehow find a way to keep going.

These days come less often than they used to do, and I wonder if the fact that they are less frequent makes it harder to deal with them when they do come.  It’s never one day in isolation.  The peak is one day, but the shock waves and impact on our little family last for days.  We walk on egg shells.  Each of us hidden in our own private black hole of hurt, despair, guilt, blame…  blaming ourselves and the others in our family for their contribution to our pain.

That’s where we are now.  I hate it.  I always feel like I’m the linchpin to getting everything back on track.  The fragile connection between us that needs to absorb and fix the pain, hurt, disagreement and misunderstanding between the others.  The one who tries to help the others understand each other’s point of view, their reason for doing or saying what they did.

I should probably just leave them to it. But they both look to me for the explanation. They moan about the other person, take their anger and frustration out in their words to me.

Eventually it will blow over.  A fragile peace will evolve.  “Normal” life will resume… until next time.  What damage is being done though? What is the long term impact of this?  On each of us as people, on our relationships with each other? I don’t know.

Deep breath…

Man this parenting lark is certainly keeping me on my toes!  Around 18 months ago our child told us he was gay.  No drama for us – we have plenty of gay friends and gay family members, so it really didn’t make much difference to us.  Relief from the child that we were ok with it, and life carried on as “normal”.  We told family and a few friends over time, but no big announcements or anything like that.  It didn’t seem necessary really.  It’s not as if we go around announcing that we’re not gay!

About 6 months ago our child started to talk about being trans-gender rather than gay. Again no drama, we have a friend who is mtf transgender, so not a completely unknown scenario for us.  We’re happy to go with whatever works and keeps our child happy.   These feelings have been present for our child from around the age of 6 or 7 years old.  Having talked about it for a few weeks, our child has now asked us to treat them as a girl, call them by the name Angela and refer to them using female pronouns.  She has changed her Facebook account.

Now, most of the people we know – family and friends – more or less cope with the whole gay idea.  However, I know that our child being trans-gender is going to take more explaining and there will be people who just don’t get it.  It is more common amongst the autism community – I’m not sure why, but there is research that suggests that both autistic and trans-gender people actually have different brains than neuro-typical or cisgender people.  But that’s actually irrelevant.  I don’t know how to explain it to people.  Do I even need to?  I probably don’t “need” to, but some people will want to know why.  Someone asked me “how did this come about?” when they found out.  I don’t know the answer to that.  It just is what it is.  There is no explanation.

Angela said I should just announce it on Facebook 🙂  I don’t think I will be doing that.  But it’s not going to take long for people to know.  I will refer to our child as Angela.  That in itself will lead to questions from people who know us.  I can’t not call her Angela in front of people we know.  That will only make her feel that we don’t fully support her choice, or that we are embarrassed by her.  That would be awful.  So, I just need to bite the bullet and do it.  I’m worried I can’t answer questions that might come up though.  I don’t want to give people the impression that I’m embarrassed by her choice, or don’t fully support her.  Deep breath.  Here we go!

I hate it when he’s happy

“I hate it when he’s this happy”  They’re not words you’d expect to hear from a mother, about her son.  Especially on his birthday, his 13th birthday.  But that’s what I said this morning.  When my boy was very, very happy – crying tears of happiness in fact.

It’s not because I don’t want him to be happy, because I absolutely do want him to be happy.  It’s because when he gets happy, especially that happy, I know that in a very short time he’s going to be devastated.  It always happens.  Every. Single. Time.  There cannot be a high without a low.  And the low is always so low, and lasts so much longer than the high.

When your child is happy, it makes you happy.  And when they are sad, it makes you sad.  But when you know your child is always going to hit a lower really fast after the high, you can’t easily enjoy their happy moments anymore.  You see their happy moments with despair and dread in your heart.  Because you know the happy face and joyous smile is fleeting.  And the pain for them too, when it ends, is almost too much to bear.  And that sadness will suck away the fleeing joy that they felt, so that it’s almost as though it never happened.

So, when I say I hate it when he’s happy, I don’t really, I just hate what I know will come next.

 

Back to “normal”

Halfway through the first month of the new year already, I have to say I’ll be glad to get back into what passes for “normal” daily life for us.

At the end of last year we debated whether or not to try a very gradual reintroduction to school.  Our boy said he’d give it a go but it’s been clear from the incredibly high level of anxiety since then that he really didn’t feel at all safe about going into a school again, and only agreed to discuss it because he thought it would make us happy.  Trying not to bend to the will of others is really hard sometimes, especially when those others are people in “authority” and behave in a way that says “I know better than you what is right for your child”.  I find it very hard to know what’s right when life is like that and constantly doubt my decisions and thought processes.  No wonder our boy finds it so hard to know what to do sometimes!

Add to that his desperate desire to do “the right thing” and make people happy and it’s just about impossible to actually know what he really wants to do or how he feels about anything.  It becomes a process of trial and error, watching everything he does and says when you talk about a particular topic and spending ages encouraging him to tell us what he really feels/thinks, reassuring him that we won’t be upset with his answers.  It is exhausting.

Although I’m looking forward to getting back to our “normal” I know there is a massive downside to this.  Our boy has spent a bit of time hanging out with some friends outside of MacBay.  They will be going back to school and will not have so much free time.  Their availability will be reduced, and when our boy randomly feels sociable it is likely they will not be free.  He is going to miss that.  He will miss those friends.  Sadly he will not really understand the reasons behind their lack of availability and flexibility – he will believe it is because they no longer want to hang out with him – he doesn’t like himself, and therefore he doesn’t believe he is likeable to others.

It’s a tough place to be.  He wants to have friends, he wants to feel liked, but he doesn’t understand the social give and take of relationships.  He doesn’t get the subtleties of emotions and facial expressions, there is no grey in his world, just black and white.  Small groups are easier than big groups, but it is intense and hard to manage.  If there is a good day, then he wants to repeat the day – the same people, same place, same things… but of course it is never quite the same, and that leads to disappointment and upset.  Why?  Why can’t it be the same, why did it go wrong mum?!  And back to the depths of despair and self hatred, the huge drop from the happy high to the black cloud of anxiety and sadness.

So in a way I’ll be glad to get back to our “normal”, but I need to find a way to help our boy build some social stuff into his world, something that might be more sustainable, something that allows him to build his resilience and be less reliant on me to feel safe in the world.

 

 

 

Bah humbug?

A year ago my worry was how our boy would cope with having family stay.  My in-laws were here for Christmas, and lovely as they are, they are louder and more outgoing than us really.  It’s hard for other people to understand what’s going on with our boy because he’s spent most of his life faking and trying to be something he isn’t.  This has taken it’s toll on his mental health, but makes it hard for those who aren’t with him every day to understand… it’s had enough even when you are with him every day!

Anyway, last year he did ok, we went to Glenfalloch for Christmas Lunch and it was great!  He survived it without feeling tooooooo awful and it was a great day off from having to think about preparing food (for me!).  Because it seemed successful we decided to go there again this year.  Can you tell where this is going?!

It didn’t go well.  First of all it seemed noisier, a bit more frantic feeling.  Then he didn’t like the food – food has always a bit of a “thing” for him.  So I went home to get some food for him and came back.  He ate that, but his anxiety and tension levels were still escalating fast, so I took him home.  Of course, then he felt bad because he thought he was ruining Christmas Day for everyone.  Even higher anxiety levels… and so on.  I raced back to eat my main course and then abandoned Christmas lunch and came home.  The rest of the day was a bit tense, walking on eggshells and the boy feeling that he’s stuffed up Christmas.

He sets himself such high expectations and the search for perfection in terms of how he interacts with others and how events and friendships go is painful.

Next year we will be having a BBQ at home and eating chocolate.  We will have few presents, there will be no BIG thing about Christmas.  Low key will be the plan.  We are not religious and the whole commercialism of Christmas is pretty ugly really.  Next year needs to be different.

2017 clearly needs to see us working on the garden so we  can build our deck and have a BBQ.  Is that a new year’s resolution?  No – I don’t believe in those either!

 

“So much to offer the world…”

Since my last post, there have been a lot of times that I have thought about saying something but then every time I thought about what I wanted to write, it just seemed too big and confused and I couldn’t work out where to start.  But, as Christmas and the end of 2016 gets closer I feel that I should make the effort to write something down at least once more this year.

Last time I talked about reducing meds back down to where they had been earlier in the year.  That definitely seemed to help a bit, but we haven’t got back to where we were in other areas.  But then, when I look at where we were a year ago I realise that although our boy cuts himself, he no longer actually wants to be dead.  It sounds a bit warped, but that feels like progress to me.  His mood swings are awful and I sometimes feel like I’m all alone on a boat in a storm – can’t see what’s coming next and no idea when it’s going to hit, or how I will survive it.  But I do survive it – always.  Another drug has been added to his regime to see if it helps with his mood swings.  There are days when I think it helps, other days I’m not so sure.  We’re trying to keep at a half dose as one of the side effects that he experiences is intense hunger… which leads to unhealthy weight gain in most kids who take this drug.

Last time I wrote, our boy had just started to see a psychologist.  The idea was to help him to feel better about himself, raise his self esteem.  Unfortunately he just ended up feeling that we’d sent him because we wanted to change him and he was upset that we couldn’t just accept him as he was… We’ve stopped sending him for a while – maybe again a few months, we’ll see.  One thing that was very clear to the psychologist though was that he really struggles to understand emotions and feelings – his own, and those of others.  It makes life so super hard for him; he doesn’t even understand his own feelings of building anxiety and stress – he’s either all good, or terrible – he can’t feel the change or building feeling in himself so he’s unable to use any strategies to help keep things under control.  Hopefully as he gets older and through puberty we find a way to help him with this.  It’s sad to watch as he really wants to have friendships, but they invariably go wrong – either in reality or in his mind – due to some slight or subtle variation in social rules that he just doesn’t get.  Every time a friendship goes wrong, his tears break my heart.

But he has achieved so much.  A holiday away, a sleepover or two, lots of Leap, a weekend away, lots of photography with a student, regular visits to a dog trainer with his puppy, some high jump, he gets up and gets dressed every day (he didn’t last year!), he seeks contact with others (even though it so often goes wrong!).  He has such a beautiful heart.  I had a lovely email about him the other day:

“He is such an awesome young man. My daughter was so impressed with him with their short meeting and I am very fond of him. I guess he just has to believe that about himself.  Big hugs to both of you. Please tell him how much I admire him for how he has stuck with xxxx. He is a bright young man with so much to offer the world.”

Yes, I am proud and also thankful that the person who wrote this can see what a beautiful person he is under the confusion and hurt – the challenge now is to help our boy see this too!  I read him the email; of course he didn’t believe it but those words would have gone in somewhere!

On top of that I have been a little unwell too.  I am waiting on some tests but autoimmune thyroid disease seems to be part of my ongoing autoimmune health concerns, alongside some other stuff.  Of course our boy doesn’t know about that.  He is terrified of the idea that I will die one day (which of course I will!), but any sign of weakness in me upsets him hugely and he imagines all sorts of terrible scenarios – we’ll keep my health situation quiet for now.  No need to panic him.

So where to next year?  More of the same I guess.  There are many years of puberty to get through yet and I suspect things will get worse before they get better.  Perhaps a retry of school?  Maybe, maybe not.  Small steps, deep breaths, one foot in front of the other, and just deal with the moment…

 

 

 

Too much responsibility?

And so another month has passed and where are we now?  Last time I talked about how our boy had said he had cut himself in the past, and that he was having incredibly dark thoughts and not doing well at all.  We have decreased his meds back to where they were before the increase in August and while he is slightly less dark, he is still not in a good place.

Our boy’s self esteem is at the bottom of a very deep, dark hole.  He really doesn’t like himself and doesn’t believe anyone else could like him either.  I was devastated to see that he is self-harming.  How does a 12 year old boy even have the thought in his head to do that?!!  My reaction was probably all wrong.  All my fear and horror was right there in front of him, in his face.  My shouted, desperate orders to never do that again, to promise me he never would.  All wrong.  I realise now that all I did was add to his anxiety, fear, shame and self-loathing.   I wish I knew why he hates himself so much.  It’s heart breaking and I feel helpless.  I fear I am to blame.  Have I been to harsh, critical, not given enough genuine praise of him as a person?  My partner used to tell me that I was talking to our boy horribly and called me vicious.  Is this my fault?  Am I at least partly to blame for this horrible, horrible mess?  I don’t know how to find the answer to this and am scared too.

He had a first visit with a psychologist last week.  We have decided to go private, the health system is slow and not helpful.  I can’t wait, I can’t bear the thought that our boy could become a sad and terrible statistic.  He was drained after, emotional and all over the place.  I could hear him crying as I sat in the waiting room.  After, he told me that even though he hurts himself, he doesn’t want to die.  He never intends to hurt himself that much.  He loves me too much and couldn’t die as he wouldn’t have me anymore… he says I am the only thing that stops him from wanting to die.  I feel so responsible.  This is hard.

 

My heart breaks

Before our holiday at the end of August our boy’s pediatrician decided to increase the meds our boy is taking for anxiety.  He’d been increasingly agitated since around middle of May and we decided it wasn’t just down to the impending holiday, but perhaps he needed an increase.   Within days we could see an improvement.  Excellent!

Towards the end of our holiday our boy was a little agitated, but ok and we put it down to getting through the holiday, different environment etc.  However, things have continued and even though he’s tried REALLY hard to stay engaged and be happy (yes, he has to actually make himself try to be happy), he’s not doing well.

The last 10 days or so have been horrible.  Dark thoughts, very negative self-talk, telling me he cries every night, posting on social media that life is too hard and it would be simpler to die now.  Today he told me that a few months ago he was cutting his feet and sometimes his fingers.  He said it made him feel better.  Are you wondering how a mother could miss cuts on her child’s body?  I’m wondering too.  I’m also not sure whether he really did do that or whether he just thought about it…  I guess I’ll never know.  I watch him though, always, and I don’t remember seeing anything that would make me think he did that…. but then I have a sister who did that for years and we didn’t know then either.  It scare the life out of me.  I feel that I’m back to not being able to take my eyes off him, can’t let him out of my sight, just in case.

My heart breaks for his pain.  I just don’t know what to do for him.  His pediatrician has decreased the medication dose, back to what it was before… when it didn’t seem quite enough… but an increase is too much, so where does that leave us?

 

 

HE did it!

I think we did  better than “survive”.  The holiday that was planned a few months ago, and took place at the end of August/early September has been and gone.  I don’t think any of us feel as though we’ve been to hell and back.  We are tired, but that’s ok.

The night before we were due to leave (at 5.30am I might add!), our boy even slept!  I was not expecting that.  Usually when there is anxiety about what’s happening soon, he doesn’t sleep… in fact, the week before we were due to leave he tentatively decided that he was actually looking forward to the holiday.

I felt like I was planning for a military expedition or something like that… trying to think of all the the things that could possibly trigger a meltdown or an increase in anxiety and either pre-empt it or take “stuff” to help get through it… medications, alternative therapies, fidget toys, other distractions…  We had seats booked on the plane so we knew exactly where we would be, food already ordered and waiting for us in our apartment so the “right” things were there when we arrived, an apartment at the end of the corridor so there was minimal risk of noise from other guests tramping back and forth past our room, his own pillow and sheets for the bed (tactile sensory issues), air conditioning, cooling fans, internet access…  I think just about everything was covered that could be.

We only had to get through a week.  10 days may have been too much – we didn’t even contemplate 2 weeks!  We didn’t know whether our boy would want to just go non-stop until he could come home, or we thought more likely he would want to hide away inside on the internet – his safe place is online gaming with his friends…

The journey out was ok.  The plane journey was only 4 hours but was just about at his limit.  But we had no dramas.  The car journey to the apartment was nearly an hour – again just about as much as he could take.  The apartment was fab!  Over the road from a cool park with lots playground areas and the sea.  There was a pool and a spa.  It was quiet.  The internet quality was rubbish.  Thankfully our boy surprised us by wanting to go non-stop all week until he could get home, because the wifi was not going to be adequate!

He literally did go pretty much non-stop.  Up at 4am or 5am every day.  In the amusement and water parks pretty much at opening time.  Constant big ride thrills – until some of the big rides were just not big enough and the thrill was gone.   10 consecutive goes on a ride that drop 39 stories in just over 4 seconds… no queues, no waiting between rides.  Perfect.

Half way through the week the thought of a 4 hour plane ride back began to cause stress.  A few niggles happened, a little anxiety having to wait for the other family we travelled with and their younger children in the park…  We just let him go, we didn’t all need to be together all the time… it was ok.  He just went on ride after ride after ride…. man that boy needs to move and feel the force of gravity and movement on his body 🙂

How to survive the flight home with a tired out boy?  Remind him that his 6m old new (to him) puppy was waiting for him when we got home.  It worked.  We did it… actually HE did it.  So proud.  A year ago I would not have thought this would be possible or successful.

Exhausted – but soooo proud and happy.