Doors slam

Today is a me day.  The kids are at the school holiday club today ( a special treat) and I have nothing more planned than a haircut and to run a few errands and read my book.  It’s going to be nice.  Harry even did the grocery shopping last night so I wouldn’t have to contend with that today.  On my day.

Freddie had a rough morning on my me day.  This me day.  Being the last day of the holidays, and being a tad sleepy eyed – when the kids asked me “can we watch this morning”, I wavered.  Never waiver!  It’s like the first rule of parenthood, isn’t it?  In Parenting for Dummies, I’m sure it takes up a whole chapter.  Never waiver.  I wavered.  Mistake number one. The precursor to Freddie’s rough morning.

So Freddie retired to his room with my laptop to watch a Harry Potter film and Izzy in my bed watching Ben and Holly or some such.  Izzy snuggling up with me.  Freddie shut away in his own world.  His preferred world.  To my credit, I did have the sense to include some stipulations – 8am when my alarm goes off, the devices go off, no fussing.  Get dressed, teeth and then you can play.

At 750 I alerted them.  Freddie: “Yes, yes”  Izzy “Ok mum.”

8am my alarm goes off.  Izzy:  “Okay mum, what shall we play?”  Freddie: “F***ing this, F***ing that….”  Total rage and complete loss of self-control.  Door slams.  And slams.  And slams.

My beautiful first born son, not yet eight years old, has hit me and kicked me, yelled at me, threatened me and slammed the door behind me as I retreat from the room.  I feel like a FUCKING FAILURE!  I mean please, what kind of mother has an eight-year-old child that swears at her and hits her on almost a daily basis, sometimes several times a day?  I am ashamed, not of my son but of myself.  It weighs me down this shame.  It drags behind me, clinging to my shoulders as I try to go about my day with a smile on my face.  It lies in my chest like a lump of cold hard rock, locked there so I can be sure my son feels loved and accepted.  Locked there to protect him from the judgement and disapproval of people who don’t see this side of him, but hearing it could not help but change their opinion of him.

High functioning autism is a beautiful gift and a dreadful curse, all wrapped up in the mind and body of my beautiful, first born child.  It will never go away.  Accepting that it’s not simply a failure in our parenting style is actually really difficult.  Because we are failing, almost every day, to give Freddie what he needs to live a calm and peaceful life.  His rages affect us all.  Not in the least what it must feel like to him, to lose control.  To struggle to find peace.

I’m not sure where this post is heading, perhaps it’s just a release of the intense sadness I feel today, having the time, alone, to indulge in my feelings.  Acknowledge them and accept them.  Share them.  Not having to push them to the side, Keep Calm and Carry On.

The sky is grey, heavy with rain and thunder rumbles.  Even the weather joins me today.  In quiet grief.

 

 

 

Why I’m embracing the bow tie

It’s our third day back at school.  I have precisely 14 minutes before it’s time to up sticks and leave to pick Freddie up.

It’s our third day back at school.  The third day of Freddie wearing a skirt to school.  Let me stop ya right here…Freddie is not my transgender child.  That’s Izzy.  Izzy is transgender.  Freddie is, well, Freddie is Freddie and Freddie does what feels good for Freddie.  And what feels good right now – is wearing a skirt.

Freddie wears his skirts long and flowing.  He wears his skirts (one belongs to Izzy, one is from the dress up box, and one is a donation from my wardrobe which my mum took in for him during the hols) with one of several long sleeved shirts.  He wears his shirts buttoned up to the collar.  He wears his collar with either a bow tie or a regular tie.  Freddie chooses striped socks pulled up and black dress shoes we bought him for my sisters wedding.  On top of this he wears a long blue wizard like dressing gown.  Hooded.  He is utterly and totally happy.

I can see that people are wondering, what the F is going on here?  First the little one and now the big one?  Where did they spend the holidays – some kind of re-gendering camp?  Let me ease your minds.  When Freddie was almost three we lived with his Nana, Freddie adores his Nana and very much enjoyed dressing up in her high heels and “borrowing” her t-shirts to wear as dresses.  There was “peachy” and “stripy”, two tops I remember well.  He’s always been happy to slip in to a dress/skirt/heels…  At kindergartens he wore nail polish and drew a little following of boys who also came with their nails done.

Freddie is a boy who has the confidence and the inclination to wear attire that is considered feminine.  Freddie has been brought up hearing “It isn’t what’s on the outside that counts, it’s what’s on the inside”, “Do we judge people for the way we look?  No, that’s silly.  We judge people on how they act”.

This post has been sitting in my drafts folder waiting for some love, and hear it is three weeks later.  Freddie is still wearing skirts and shirts, but we seem to have misplaced the tie!  Here’s what I’ve learnt – kids are really, really accepting.  With the exception of the very few who have something unkind to say to almost everyone smaller than them, NO ONE CARES that Freddie is wearing a dress.   As far as I can see, they just see Freddie.  It’s just another little character trait that makes up one of their school mates.

I find it interesting, because even my mum, who as I’ve said before is 100% supportive and loving, finds it difficult not to encourage Freddie to wear more “ordinary” clothes to school.  It’s intriguing is it not?  It was only in the early 20th century that woman began to wear trousers, even then it was frowned upon – but before that, just not accepted, any way or any form.  Is it not just the same now – why shouldn’t men be able to wear skirts or dresses?  In many countries men wear dresses – right?  So it’s just cultural and cultures evolve over time.  I LOVE that my kid walks his own path.  

I honestly never imagined motherhood would be such a period of evolution – the person my children have made me, is not the one who stood before.

Coming up soon

Just a few more weeks of the summer hols, bittersweet days of needing a break from the kids but wanting to hold tight to every moment spent with them before we return to the routine of school and kindy.

Over the hols we’ve spent a lot of time at our local beaches, we’re superbly blessed in terms of choice, white(ish) sand, clear(on good days) water and gentle(if any)waves.  

This year the kids both have water confidence and no longer require an adults hand to grip on to as they play in the shallows.  

Last summer visits to the beach often ended in Freddie having a meltdown – too hot, too windy, too sandy… but this year he’s really pulled himself together and has become a very keen boogie boarder, as has Izzy.

Thinking ahead to those hot and humid February/March days I’ve been filling the kid’s heads with plans to make Beach Time part of our school/kindy day, every day that I can.  For me that means pre-preparing dinner (big ask, but possible as I’ve not got many commitments this term) and bringing afternoon tea when I go to pick them up, we can go straight to the beach from school.  I’ve talked about it almost every sunny day and Freddie has started to incorporate it on to his reality and THAT is a win! NB Freddie was diagnosed in December with Autism, High Functioning. He’s also Gifted.  Getting this idea into Freddie’s mindset is essential to it being a success.  And getting physical activity into both the kids daily routine is essential not only to their well being but to my mental wellbeing.

I’m excited about this year, Izzy will be starting school, beginning of second term.  We’ve got a meeting coming up at school to discuss how they can make school a safe and nurturing environment for our daughter, their very first affirmed transgender child.  We’ve got teacher interview coming up to meet Freddie’s new teacher (I know her as I’ve teacher aided in her class and am looking forward to seeing how Freddie might flourish under her care.  I have to mention I’m REALLY sad to leave our beautiful teacher from last year behind, I may have to volunteer in her class this year to soak up some of the awesomeness!)

Next week while Harry is off we’ll get the documents witnessed and sent off to change Izzy’s name on her birth cert.  Originally I wanted to get both name and gender changed but I’ve since learnt this involves Family Court and I believe is unprecedented in NZ to date.  So instead we’ll change her name and then apply for a NZ passport which allows for affirmed gender, we have a letter from Izzy’s doc to support our application. Last week the hospital changed her name and gender marker and that’s now changed with our GP too.  Izzy will be registered at school under her new name and gender.  All of these things, and of course the fact she has socially transitioned, will support our day in court, when that day comes.

Disappointing news is that I don’t have a guaranteed job at school this term – really sad about that, so keep your fingers crossed something will turn up.  I really want to be working at my kids school, not just because my kids are there but because I whole heartedly identify with and support the school’s ethos of inclusivity.  I’m also a little attached to some of the kids!

Well, that’s enough for now – Harry and the kids are due back any minute and then it’s toast, “pudds” and bed.  We’re in the final chapters of The Horse and His Boy, and although I’ve read it numerous times before I’m really looking forward reliving the end of the story.

Breaking out

It’s been a while since I’ve written.  There’s really just two reasons for this, the first is there’s just been too much going on that I haven’t been able to (wanted to?) process it, so writing about it hasn’t been an option.  The second reason is, that in that frame of mind, the idea of picking away at a post on my phone has been totally unappealing!  BUT joy of joys, tonight Harry came home with a little gift.  I am now the proud owner of a KEYBOARD!!!  I can prop the phone, or tablet up in it and type away as God intended.  What?  Glass of wine too many.  As my Form 3 & 4 typing teacher intended.

So this week we had Freddie’s neurological assessment.  Hmmm.  He loved it.  Next week we’ll hear the results.  Harry and I sat in the waiting room, we decided finally on a colour for the walls, at least the kids room.  Resene Opal.  It’s nice. They have it on the waiting room wall.  I’d like the sofa too.  I’ve always thought it would be great for the kids to have a sofa in their room.  We could ditch the chest of drawers, they’ve only got enough clothes to fill one drawer each anyway, maybe a sofa with two drawers underneath?  That’s sounding a bit bestoke, pricey, and never going to happen.  Maybe just the paint then.

I had to leave, before the testing was completed, to attend a brainstorm on how to build resiliance and how to tackle a couple of behavioural issues in Izzy.  As I drove between the two I  thought about how we got here.  How the hell did this become the norm?  Is this the norm?  Is this what my fellow parents are taking time out from their day to do?

At this brainstorming session, the child pscych who led it said something about what a service I’d be doing to write about all this stuff.  How it might help other people.  And I thought to myself how lacking my blog has been, how much more it could be.  I spent a night or two wondering what?  What do I write about?  To date I’ve just been emptying my mind, trying to eliviate the load.  Anything really to educate readers has been “reblogged” from other peoples posts.  I wondered, do I have anything worthwhile to share?  I’m still wondering.

The hidden

I’ve written this post, or one just like it, several times since starting my blog.  But each time hit delete instead of publish.  Not wanting to expose him, us.  But I know that other people out there must be experiencing the same things and I’m not doing us or them any favours by hiding the truth away.  I feel ashamed, but I shouldn’t.  These are the cards, the kids we’ve been dealt and we’re raising them with love and as much grace as we can muster.  I’m sharing this because there are many difficulties people hide, hardships they don’t reveal, problems they don’t share and I am guilty of overlooking them or dismissing them.  

We’re sitting in the car headed to a beautiful beach.  It’s 930am.  Harry has just commented “That’s the hardest morning I’ve ever known”.  Harry, you lucky bugger!  This morning was yuck, but many days start this way – it’s just that Harry gets to leave for work each day.

Sometimes I want to scream, slam a door, throw a vase at the wall. Sometimes I want to walk away, escape, climb into a small dark cupboard and rock myself to some peace.  Today I wanted to drive my car in to a brick wall.  Just to make it stop. But of course I didn’t.  I wouldn’t.  I can’t.  So instead I am in the car, kids in the back, headed to the beach. 

Freddie is my first born, I love him with all my heart but I struggle to maintain my sanity with him in my life.  That sounds horrible, and the reality is horrible to admit.  My son is seven.  He has a wonderful mind.  He has love in his heart.  My son struggles processing the world he lives in, his senses quickly and often go into overload.  Izzy’s voice is too loud, his cup of water smells horrible, his jumper is scratchy, the sun is too bright, the wind too strong, the sand too sandy, jeans are uncomfortable, the kids at kindy drop off move too fast, his classroom too noisy, too many people in Kapa Haka, people look at him too much, talk to him too much….

Freddie doesn’t recognise his body’s cues, he often refuses to eat and drink.  He doesn’t take his fleece off when he’s hot or put it on when he’s cold.  Not surprisingly, Freddie has low energy and poor muscle tone.  He could spend days in bed listening to Famous Five audiobooks.

These difficulties lead him to lash out.  When he reaches overload, which as I said can happen quickly and sometimes unexpectedly, he explodes.  He yells at us, hits us, throws things, slams doors.

It is freaking stressful living with this child.  We live tiptoeing between one outburst and another.  And we live with the guilt.  Guilt of wanting to be free of the constant stress and anxiety.

We try really hard, and we will always try hard, but the effort is taking it’s toll.  On all of us.

Next month Freddie will be assessed for Aspergers.  I can almost taste the clarity that will come if he is diagnosed with it. To be able to say to ourselves “It’s not us.  We’re not crap parents”.  To know, without doubt, that he is not an arse of a kid – that his behaviour is not a choice and it’s not just his “personality”.  Our kid is all of the things above but he is also glorious, brilliant, funny, kind hearted and interesting to be around.  He’s so loved.  

Some see diagnosis an undesirable label, I set it as a saviour, something that has the power to set us free.  Freddie is becoming more self aware, he’s starting to recognise his rage as something “other” and it frightens him.

We have to be our children’s strongest allies, their greatest advocates – my son can’t be “cured” but he can be understood and just like his sister, accepted as his own unique self.

Moving on

I’m so used to “moving on” that sometimes I forget the state of STRESS Harry and I live in.  The last few weeks with Freddie have been so bloody stressful, it’s like being in an abusive relationship, where you find yourself walking on eggshells, anticipating the next outburst.
School has been a little crazy lately, lots of different things going on; student teachers, book week, movie night, class trip… what can seem, for some kids, a fun break from routine is an absolute nightmare for Freddie, and by extension, for us.

What happens when Freddie can’t predict what will happen next, and next and next, is the creation of a state of constant anxiety, that descends on him like sand in an hour glass; once it starts running there’s no stopping it, unless the situation is reversed.  

Instead of enjoying the extra freedom that comes with these types of days Freddie becomes fixated on trying to regain a sense of control over what will happen.  But it’s really not possible.  So the next best thing he can do is put on a mask and just try and get through the day.  Until mum comes.

And when Mum comes, the mask slips away.  Alternatively, Freddie tears it off.

I know from the moment I see him through the classroom door.  I can read his body language, his face, with it’s mask starting to slip, contorted in the effort to control himself, keep himself in check.

On these days I wish he were my only child.  I wish I could give him my full and undivided attention.  I wish I could gather his things and help him get quickly to the car.  It’s what he needs.  He needs the overload that has been his day to be removed, rapidly, and replaced by a quiet sanctuary where he can recover and find himself, amongst all that anxiety.  He needs to be alone within four walls, curtains closed and the door shut.  He needs peace and quiet and solitude.  He needs access to food and water, books, his violin, his chess set, and famous five on YouTube.  He needs to be left alone, and only then can he find his way back.

My heart breaks every time I can’t give him what he needs.  I know I provide him with a substandard version of what he craves, because he’s not my only child.  

So, here we are, it’s a glorious day and I’m sitting in the car writing this while Harry plays with the kids in the sunshine.  I need this time to acknowledge that life hasn’t been so easy lately and to let go of it all, just for a few minutes.

This weekend had been so beautiful, but oh so difficult.  The outbursts have been frequent, thankfully interspersed with moments of joy, but by the time I’ve let go of the stress of the last outburst and start relaxing in the joy – the next attack comes.

It’s hard to hear your child raging at you.  It’s hard to fend off physical blows, and words of abuse, without eventually using force of your own.  It’s hard to move on.

Most people don’t see this side of Freddie, nor would I want them to.  But that also comes with it’s difficulties; we’re met with ridicule when we allude to Freddie having Aspergers.  The first question is often “have you had him diagnosed?” and before we finish answering that, right around the word “no…” all interest is lost.

A year ago I begged our GP to refer Freddie and Izzy for diagnosis, Freddie because we believe and have always believed, he has Aspergers, and Izzy because her behaviour was so out of control and we were a family who was about to fall apart. 

The dr was annoyed, after all I had inadvertently only made an app for one child.  Perhaps he was having a bad day, maybe it’s that burn-out I hear gp’s are experiencing, but whatever the explanation it was really inappropriate.  He eventually conceded to referring Izzy, saying he had no record of problems with Freddie.  He stood and held the door open, I left in tears.  I don’t know how we made it home that day because it was a real low point in my life – finally admitting we need help and having it withheld.

So far nothing’s come from that referral, not even a letter to say we’re on the waiting list.  But, life lead us to a private practice for Izzy, and with her transition, the problems I needed help with, in her case, have solved themselves.  Not everyone receives as good grace as we’ve received, how would they get help?  

I am really angry with our GP, we’ve actually only seen him twice more since then and both appointments have been really lacking in respect.  

When I described Freddie to Izzy’s psychiatrist he had no doubt in his mind Freddie was on the spectrum (we have hundreds of examples going back to babydom).  Understanding our financial situation Izzy’s Dr instructed me to get Freddie referred through the public system.  Unwilling to approach our GP again I researched alternative paths, a child’s school can refer (ridiculous that the people that know him best are not thought to be perceptive enough to make the referral themselves), fabulous I thought.

Well it wasn’t as easy as that.  I sent an email to Freddie’s teacher, who is in my opinion, the best teacher in the world, asking what do I need to do?  She replied, directing me to the Principal.  I emailed the Principal, feeling positive.  The Principal replied saying “yes we could meet, but that she was very surprised as she has taught many children with Autism and would never have picked Freddie out as being on the spectrum”.  So what you say, that’s no biggie right?  Just an opinion.  But with Izzy just starting her social transition I felt like I couldn’t handle one. Single. Thing. More.  And so that’s where it’s ended.

But, like the title of this post, I have to suck it up and move on.  It needs to be done. No amount of wishing or pretending, things are different will help.  Freddie ain’t losing the traits of ASD, he’s getting better at managing them yes, but at a cost to our family.  

I keep reading ” you will have to be your child’s advocate because nobody else will be” and I want to ignore it, I don’t want to stand out from the crowd, but I have no choice.

After the weekend we’ve had Harry agreed, we need to get this done.  I feel a lot better knowing he will be there, adding his voice.

There’s a storm brewing

I’ve just sent a text to Harry, he’ll be arriving home just as the storm reaches it’s peak.

I’ll do what I can to lessen the potential impact, but I think we have to accept the reality, it’s going to hit and it’s going to hit hard. 

Though sometimes, just as it seems a storm is sure to hit, it doesn’t.  Maybe the wind picks up a little, the rain pounds down, but the actual storm doesn’t hit. 

Maybe this will be one of those.

Freddie had a school trip today, to a theatre to listen to Maori story tales.  What fun!  No, not for Freddie.  Even though his Nana was there as a helper, and knows well of Freddie’s inclinations, it was not fun.  And I could see the storm brewing the moment Nana delivered him home.

“It was a bit noisy” said my mum, looking at me meaningfully.  “We had to wait half an hour in the wind for the bus too.  At the railings!…” said Freddie as he sunk into a disheveled heap on the sofa.  

My mum makes a wise and quick escape.  I smile nervously and wring my hands.  I look at Izzy, just woken from a nap and full of energy, energy that needs to be released, fast!  A moment of hesitation on my behalf, and Freddie strikes!

I swallow a scream of terror and quickly get some food and a drink into his hands.  Freddie strikes again, there is a sultana visible in his fruit chutney, I quick myself mentally for this novice’s oversight, because I’m not a novice am I!

Izzy moves in like a snake, with multiple mini strikes against her brother: sitting too close, touching his arm kissing his head and finally lying on him!

I inwardly curse the 60sqm we live in and ask Izzy to play in her room.  Freddie takes the opportunity to hit Izzy and next thing I’m wrestling them apart.

Freddie is learning to regulate his moods.  This year has seen amazing changes, he’s got a fantastic teacher who really gets him and is so open to trying different things to help him, along with the other 23 kids and all their unique needs.  Harry and I have become much better at managing Freddie and Freddie has found a voice to express his frustrations.  He tries really hard.

So things are definitely easier and they’ll be even better come spring when we can spend less time encroaching on each others space and more time having fun together.  But the last four years have been kinda like being in an abusive relationship, it’s taken it’s toll.

I know we’re so blessed.  Our kids are both healthy and bright and awesome.  Freddie is doing so well at school and we’re thrilled.  He’s been pretty darn awesome about Izzy.  I love him to pieces, but when the storms come I wonder why?  Why does it have to be so hard?