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.

 

 

 

The big five

Izzy passed a new milestone – she turned a fabulous, glamorous, glorious five years old!

We celebrated with a pile of her little friends and cousins and their mum’s (plus a couple of brave dads) on a Sunday morning a couple of weeks ago and man was it lovely!  The kids played outside, sat happily at the table making masks, grazed on the party food and loved the bubble machine.  You can’t go wrong with bubbles, you really can’t.  There was a piñata and no one got a black eye.  No one!

The cake even turned out okay, and my cakes rarely turn out ok. Like when Iz turned two,  I had a disaster of a cake situation.  The first cake (yup I baked two) sank, and I mean really sank, like the crater on Mt Eden “sank”. So I whizzed up another one, like any dedicated mother right?  It OVERFLOWED in the oven!  I didn’t realise until the smoke started billowing through the house!  Not a good cake story.  I ended up covering the crater of the first in icing and chocolate fingers.

This year I decided to buy a sponge and put all my effort in to decorating the bugger, but what the heck?  When I went to the supermarkets (three different ones) to buy the sponge and to get the edible flowers which I wanted to coat in sugar and use as decoration – none of the trio stocked either!  So I searched Foolproof birthday cake and came up with a questionable recipe – put all the ingredients into the cake mixer, and mix.  This is my new go to cake recipe, and I’m sorry to say – the Hummingbird Cafe “Cake Days” recipe book has been pushed to the back of the bookcase, no longer will it taunt me with delicacies I’m just not competent enough to produce!!

All that aside, the window dressing that is, the very best thing about the party was seeing Izzy so happy, so at ease with her peers, so full of joy.  I can’t put in to words how incredible it has/is been to witness such a huge change in our child – Harry and I can only shake our heads and smile. The kind of smile that makes your face sore.  That kind of smile.  It’s honestly such an amazing feeling.

It feels like forever ago when I wrote Feeling the love rejoicing the dramatic change in Izzy’s behavior, being able to relax in playgrounds, not worrying about my child attacking someone else’s.  No.  Those days are long gone and the party was another reminder of just how powerful affirming Izzy as a girl was.

The other thing the party reminded me, was of the support and acceptance we’ve received from the families at kindy, if any of you are reading this – Thank you from the bottom of my heart!  I know you think, it’s no big deal, but it actually is.  Val, the teachers and you beautiful kindy parents (and my school friends) were my haven during those really hard early days when we were navigating Izzy’s transition and at the same time, dealing with the rejection from members of my family.  You’ve never questioned our decision or demanded explanations, or set out conditions.  Nothing changed with you guys except the name you called my child.  Thank you.

So now the kid is five.  Fabulous, glamorous, glorious five.

 

 

.

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.

A fortunate life

I’ve led a very fortunate life, the older I get the more I’ve become aware of just how fortunate.   When I look back at all the hardships and the struggles (and there’s been a few Grade A struggles I promise you!) what I see is this long line of people who have offered me hope, support and mentoring along the way.  I didn’t always take these gifts, often I didn’t even see them as gifts!  But they were definitely there.

One such person is Val, our wonderful kindy owner.  Val has written a piece below that I’d like to share with you.                         

I am writing this from the perspective of an Early Childhood Teacher.  I have worked closely with Izzy and her mum for almost two years.

Reflecting on that time, Izzy was clearly confused by the messages she was receiving from society in general and the adults around her – though they were done from motives of love and concern for her, they were clearly at odds with her gender identity.

Since her parents (based entirely on their deep knowledge and understanding of their child, and supported by a specialist trained in the area) made the courageous and wise decision to recognise her female identity, I have been astonished at the transformation!  

Izzy went from being a child who arrived at pre-school each morning with bent head and downcast eyes, wearing her mother’s t-shirts over her jeans, to an overnight and radical change – she arrived to kindy as a child proud and standing tall, meeting my eyes, and above all, glowing with happiness.

What a joy and a privilege to be a small part of such a profoundly life-enhancing event!  It seemed utterly right and natural to listen at last to the messages Izzy had been giving us for so long.

Izzy is a girl with every fibre of her being and for her parents I have only admiration.  They all deserve every happiness.

Izzy is truly blessed by their devotion and love.

Val

Those my friends, are the words of a really amazing lady.  We count our blessings daily to have her in our lives.  Thanks Val.

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.

Tears of joy

I’m so teary eyed this morning, in my bubble there’s so much love and joy, but just outside it…
There’s a number of things jostling for position in my mind, foremost is the arrival of my beautiful niece 6 days ago. 

 Her mother (my youngest sister) and father estranged themselves, and their 2 year old son and daughter to be, from us shortly after we announced Izzy’s transition. 

 Here is an excerpt from their email letting us know they would no longer be part of our lives.  

It’s been three months since we’ve received this, and I hoped it would be recanted but it’s not and now I need to let that hope go by letting it out.

I:ve changed all the names.

Hi ***** and Harry

Thanks for coming back with answers to our questions.

I now want to share with you where ##### and I are at with everything.

We still have concerns around %%%% (Izzy’s birth name) age and whether this decision is appropriate. Our personal thoughts are that a decision such as this should only be able to be made by %%%%(Izzy’s birth name) at a time when he is able to truly understand its implications.  However you have made this decision for him and our concerns are for %%%% (Izzy’s birth name) and the possible mental impact that this might have should it not be the right approach. We are also concerned for Freddie around the mental impact of this as well.

We do not feel that the above is something that we can control as %%%%(Izzy:s birth name) is not our child and it seems that you have your minds made up.  You believe you have done the appropriate research and chosen the best solution for your child.  We could do the same amount of research and come out on the other side with the opposite approach.  Is your decision wrong because it doesn’t align with what we might do?  Not to you, as you truly believe it is the right approach.  While we can’t impact that, we are having a hard time accepting it because of our concerns.

What we can focus on is what we can control and this is around how we choose to let this decision impact our life and the lives of our family.  Our concern now is for @@@@ (their son) and for his sister.  This is not around being exposed to transgenderism, which we have nothing against, but around the risk of getting to know %%%% (Izzy’s birth name) as a girl where there may be a possibility that it may have not been the right approach and may result in %%%% (Izzy:s birth name) deciding to go back to being a boy down the track.  Our concerns are that this could be very confusing for our children should this happen.  As you want to do the right thing by your child, we want to do the right thing by ours.

Where we have concerns is that the approach we choose will impact our children’s lives.  If we decide to protect our children from the risk of exposing them to this situation and possible future reverting, it will no doubt impact much more than our relationship with %%%% (Izzy’s birth name) but with the entire family.  If we decide not to allow our children to see %%%% (Izzy’s birth name)as a girl until such time that we feel he is of an age where he can truly understand the decision and that our children are at ages where they can understand, then what does this mean for family get-togethers?  Will our children miss out on time with their Nana, aunties, uncles and other cousins as a result? Would it be right to go against what we feel is the right thing to do in order to smooth things over?  No, because we wouldn’t be putting our children first, in the same way that you are unlikely to change your approach as a result of the opinions of others. Is it fair that our children may have to miss out as a result of a decision that we seemingly have no influence over? No.

I need to reiterate that this is not about us disagreeing with people being transgender, it is around %%%%(Izzy’s birth name) age and our concern that in our view there has not been enough assessment of him prior to turning to this approach.

At this stage we don’t know what the answer is but what we do want you to be aware of is that there have been many sleepless nights, a lot of stress and worry for both %%%% (birth name) and for Freddie  They have been our primary concern.  However now, upon realising that your approach is not likely to change, our concern has turned to us looking at the impact on our own lives. We are now in a situation where there is conflict at home as we decide how we want to approach things going forward, and fear what losses may come as a result of our decision.  It is to the point that we are considering getting professional help in dealing with it.

I hope you see that all of this comes from a place of care.  If we didn’t care, there wouldn’t be sleepless nights, heated discussions, tears, worry, questions.

Please note that I have not included mum in this response as she has expressed her wishes not to be part of this discussion.

Love from xxxxx and ######.

 

Despite their deep concern for my children’s mental wellbeing they’ve checked on neither in three months, not directly, through me or through anyone else.

So, although the new baby is just 15 minutes away, I’ve not met her and I don’t know when I will.  This is a strange reality.

And finally, a message to my niece “If one day you read this, know that I loved you from the moment I heard you’d arrived. Know that no matter who you are, or who you become, you are loved.  You are beautiful and valued just the way you are.  Grow well, treat others with love and respect and never hide your light.”

Sharing

Click here to read Jacob’s Journey, raising a transgender child

I just watched this.  In tears.  It’s so beautiful and so happy and so real to our own experience.  

Today Izzy had her swimming lesson, we had to change days to fit in another ongoing appointment so Iz has a new teacher.  I admit, I did feel apprehensive, Lauren had taught Izzy through her transition and I trusted her 100%, would I be able to say the same of Izzy’s new teacher?  

Absolutely YES!  The lesson was fab.  Izzy now has two new classmates, and their parents, who have no idea that Izzy once swam with a different name.  It’s an exciting new time for us.  But that’s not what I wanted to write about.  I wanted to celebrate and rejoice over the way Izzy has become so beautifully Izzy.  She bounds into any room like a long legged gazelle.  She looks people in the eyes and maintains conversations.  She giggles and laughs and plays like the happiest child you’ve ever met!  Just like Jacob in the video link above.

Every day I feel so very grateful that she is our child.  She’s amazing, so glad I got to meet her:).

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?