Anxiety and all it's vices

Hi everyone,

I'm writing this from a good place. Just so you know.

But I'm not always in a good place. Some things get me down. Lack of sleep gets to me, sometimes self inflicted, other times simply by children being up and in our bed through the night.  Sometimes it's because it feels like I have hit a brick wall.  Sometimes it's because of what someone has said, often without knowing the full weight of our circumstances.  And this is what I want to talk about.

Anxiety.

Feels a bit like a dirty word to me. But one thing that happens when you have children that don't always act "typically" you become really anxious.  You worry about every move that they make. You worry about how something as simple as another child coming to join in their play in a playground might play out. You worry about how the other parents are going to see you. You worry that they are going to think that you are a crappy parent who can't teach their children not to hit or push. Mostly though, these parents don't really understand that Autism has this really nasty way of making that hard to communicate that it's not ok, but when you throw in verbal delays or even simply trouble communicating why you don't like something, then you live your life on the tenterhooks of trying to predict what is going to come next.  It's like your spider senses are tingling, but ALL THE FREAKIN TIME!

And, to be honest, I have learnt a lot about being a parent these last 6 and a half years.  The way I parent now is a very different way to how I thought I would.  I am probably a better parent in a lot of respects. Probably a better person too.  A much more compassionate and forgiving person.

But there is one thing that plagues me.  And that is anxiety.  Anxiety can really be debilitating.  It can stop me being able to communicate what's going on. It can make the simplest decision seem hard.  It can lead you down a path of simply wanting to crawl into bed and not face the world because of the things that may happen.  For me, the thought of running into someone that I have had a falling out with at the supermarket fills me with dread. Not knowing whether I will be ignored or whether the opportunity will be taken to point out all the things I have done wrong will be taken. And I'm not sure which one would be worse!  So it becomes easier to stay home so neither of those options occur.  I choose when and where I take my children. There are days where we choose to do something on the other side of town so that if something were to happen, then it's not likely to be around people we know.

Anxiety has been what has halted my writing on here. Worrying about how what I write will be taken. If it's too personal. If it's not personal enough. If my authentic self comes across to those who don't know me well, or for that matter, at all.  

There is a saying in the personal development world,  "feel the fear and do it anyway."  Now, whilst I'm not quite ready to throw myself across burning coals like Tony Robbins might have me do, I am willing to dip my toe back in the water at the moment. See how warm the water is.  Be a little braver. A little more bold. Be open to letting go of the fear and anxiety a little and letting my true self show.

Kelly xx

The current dilemma

Hi everyone,

It's been a really long time since I have written here.  I have a few drafts of things I have been thinking about, but they haven't been quite.....right.  

I wanted to tell you a little bit about our current challenge, and one that has taken me a little more by surprise than I thought.  

Our youngest son, J, who is 4, nearly 5, is supposed to be heading off to school next year.  The challenge with that is that he has a Global delay, and so he is actually much closer to 3 than he is to 5.  Now, we have seen some amazing advances this year with him being in pre school and we have been so blessed to be really well supported in that environment. However, big school is such a different place.  There are so many more things that he needs to be able to do, and at this stage, he just isn't up to them developmentally.  

So, this leaves us in a predicament.  

We need to decide whether to:

•  apply to send him to a specialised unit for schooling next year, which is then decided by the department of education on where he will actually be placed
• whether we attempt to put him into a mainstream class with support, though probably not to the level he is supported this year. 
• do we repeat him in pre school? If this is an option we choose, he has new kids next year to deal with, and are we potentially stunting his learning? Or, are we allowing his social skills and language to catch up to the rest of his ability? 

Each option, in our case, has its pros and cons which I won't bore you with here. But it has really put us, and particularly me, in a position where I feel that whichever option I choose has the potential to have great impacts on his growth and potential to be the best that he can be.

I spend a fair bit of time chatting to other parents with kids on the spectrum, and I am very lucky to have a little group of friends who all have children the same age as J.  It's been interesting to watch as we all navigate what the best schooling position is best for our child. The thing that has struck me is that this decision is a really individual one.  

I guess though, what I hadn't been expecting, was how much fear I have around J going to school next year.  How concerned I am about how he is going to go. Whether he will get lost in the crowd in a mainstream class, or if he won't be challenged enough in a unit placement. I find myself analysing every detail and to be honest, I'm still not sure what is the right decision for him.  At this stage I need to trust that the right outcome will show itself.  That God has his hand on this decision and will open and close the doors that we need him to. 

Question time

I asked on my facebook page if there were any questions that people wanted me to answer.  I got a couple of responses, a few through PM.

The one I want to answer came from a person that I love dearly.  Probably one of my guiding lights in my life and she may not even know it.  Someone who I watched parent her children and learnt so much from. Someone who I honestly idolised in the parenting space. And her then small boy who I just loved.  He's now a much bigger and taller young man who has grown into a fine gentleman from the great work that her and her husband have done. Her 2 girls, one now a young woman, are just a delight to be around and amazingly respectful and funny people.

Anyhoo, the point of this post is not to be an appreciation post about my friend, though I am truly indebted to her for her role model that she provided.

Her question, and I paraphrase, is around how you share the reality of life without offending other people, or how you share information without coming from a place of a wounded heart, where possibly someone has said something that really shows ignorance, or worse yet, judgement.

I come at this from two angles. 

One is, that sometimes, you don't know what you don't know.  

So, seemingly ignorant or insensitive comments come from people who have no experience of what the reality of your life is like. And in one instance, you don't want them to know the intricacies of the struggle that you face.  But you do want them to have compassion with where you are at.  So, informing people that possibly I am running on 3 hours sleep because J has been up for the majority of the night might sound like I'm complaining (and honestly, sometimes I am), but it's also trying to inform people that when I say I am tired, that it's not an exaggeration. That this affects my brain processing and sometimes my emotional ability to deal with anything more than the bare minimum is about informing, not making my life seem *worse* than yours.

The other is this. They are operating from the information that they know from their experience. 

All the things that have happened to them help inform their opinion on a situation. So it often says more about them than it does about me.  I try really hard not to take this personally, particularly when someone wants to tell me my kids need a good smack and that'll learn them.   I had one unfortunate experience of this with a father that was very upset that my son had touched his. And I get it, I wouldn't like it if I was him either. But he was rude, and dismissed both my apology and my explanation of what was going on.  It really upset me at the time, because I didn't disagree with him. I could see where he was coming from.  But he couldn't see where I was coming from. From a parent who is trying everything in their power to help her son get the help he needs to be a better citizen in this world. He doesn't see the time that we take to teach self regulation. To teach using words over hands to make your point. to see the hours of informal therapy that's gone in to getting to where we are at today. And for that dad, I am grateful that he hasn't had that experience.  That his point of reference is different. 

But I must say this one thing.  There are times when people really hurt you. To the core. And then you need to make a decision of whether they are a helpful person to have in your tribe. Sometimes it's time to acknowledge that the time or reason for that person to be in your life has changed. The hardest thing I have found is letting go of that friendship in those circumstances.  But there is a point where for my own sanity and to protect my own heart, I need to let go - with gratitude for the role they have played in my life.

What I do think we need to do is help get information out to those who don't have our experience in a model that shows compassion and invites genuine questions.  And whilst those questions might be clumsy, is coming from an authentic place from someone's heart, then welcome them, and inform as best you can, without being annoyed at the apparent ignorance. There are always things that we don't know about that others do. It's all about how you do it.

Grace and love.

Kelly xx

How do you solve a problem like Maria?

There is a very definite chapter change happening in our lives at the moment. 

And I'm not sure I like it. 

Actually, I'm really mad about it. Angry. Livid. Raging.

But more than that I'm sad. So immensely sad.

For those that don't know, Chris's job, of which he loves and does a bloody amazing job at, has been made redundant. His last day was supposed to be Friday just gone, but when he took a call from a group where the proverbial had just hit the fan, he didn't hesitate to say he would help.  And, as much as it messed with the plan for my week, I didn't say no when he said he wanted us all to come. 

 This is the first place Chris visited this time last year. And our whole family came on that trip too.  We were once again welcomed into the fold, just like any member who turns up to be helpful the week of Christmas. And whilst Chris went to work, and the relief fell over these peoples face as he weaved his magic, I wrapped Christmas presents, guillotined invites for their movie night, made coffee and swept the floor. Our kids did amazingly well and had way too much technology time.  But hey, they also ran on the beach and got soaked to the skin - or running around naked if you are J - and had an amazing evening as well.  

So, as this chapter falls to a close, though I am still trying to work out if God is trying to tell me that this chapter is not yet closed or I'm just living in denial, I know one thing. God gave Chris this job for a very specific purpose. One was that he would have the flexibility our family has needed for the last 12 months. Another has been to surround him with amazing Christian people who genuinely love him and what he does.  They have nurtured him and encouraged him, whilst also letting him spread his wings. And another has been to have us covered in prayer. Many a time has something thats been going on in our family has gone onto their prayer list. 

Now, while we wait to see what the next chapter holds, it's part grief over a job that was so much more than a job, and part anticipation of what next year has in store for us.  It's exhaustion over a year that has not been the easiest.  It's gratitude over all the things that have given us highs. It's acknowledging the learnings from the lows. 

So, if you are a pray-er, hell, even if you aren't, God hears you anyway, please pray for our family.  We would love to know what we are doing next year. What Chris's work looks like.  

All I know, is that the quote from one of my favourite movies is true - when the Lord closes a door, somewhere he opens a window. 

Looking back.....

I had the amazing opportunity to go out last night with a group of girls who all have kids who have Autism.  It's honestly one of those places that I love to go and chat about all things Autism and spend time hearing how far kids have come, and what's new and what are they doing next.  We also drink wine, so that's a plus, because really, everything is better when a glass of wine is involved. And Sarah ordered Wedges, so that was good too.

One thing stuck me last night. I was telling stories. About some of the most horrific things that have happened over the last....6 years.
Some only in the last few weeks.
Like, J turning all the knobs to full on the stove while the lunchboxes were sitting on top and D coming out of the house yelling "there's smoke, there's smoke,grab your phone we need to get out". This did mean that a fire truck was called. And fortunately there is only a little bit of plastic burnt to my stovetop and that's the extent of the damage which is miraculous because there was a lot of smoke! But sadly the story I told didn't end there, it ended at about midday, when I picked D back up from school after he had decided a teacher was the best thing to take his heightened state out on, by punching, kicking her and pulling her hair. Then punching the lady who came to assist the original teacher. All because his "plan" of the game he was going to play was ruined by a piece of school equipment being broken.
Or going back to the time J was little and still in a pram. D took off in Target to find me, and by the time my mum had turned the pram around he was out of sight.  A lady followed him out of Target and stopped him when he got halfway down the mall because no adult was following him.
Or the time D ran off when J was just a baby at an Australia Day big breakfast. While all the other kids from our Mum's group (who I love and adore, just as an aside) seemingly sat beautifully whilst we ran around thousands of people looking for him.  Getting a phone call from the "lost childrens tent" because we had thought to write our phone number on his arm if such an event were to occur.

I guess my point is, the time my mother in law told me about had come. (Yes, I did just acknowledge that my mother in law was right. I know that would be a shock to some people) It was no longer about the deep emotions that I felt at the time - though I can vividly remember them - but it had become about the story. 

And I did one of two things for the lovely lady of whom it was her first time with us. I either scared her off for good, or alternatively, she thinks that if I can survive that amount of crap, then this is a good group to be in.

I really hope it's the second one :)

Kelly xx

Recharging the Soul

It's our 15th Wedding Anniversary. Or, at least it was, when I wrote this.  I have it all beautifully penned out in my life planning journal (that sounds much more wanky than it really is).


Anyway, after much planning, stressing, anxiety and almost cancelling in the midst of trying to pack on Thursday afternoon, we have finally made it away.

We have dropped the boys at my Mum's house for what I'm sure will be a fabulous time. We drove nearly 3 hours and are currently halfway through our 2 night getaway.

There have been a few things that have struck me since we got here.

• We are both sighing. A lot. It's like we are breathing for the first time in a long time.

• We have both slept. A full nights sleep. And a day nap. Blissful recharge

• It's quiet and yet it's not.  We are surrounded by bush, and listening to the beautiful sounds of the animals around us is amazing.

• We have had uninterrupted conversation, something I forgot how to have effectively. Yes, we have both talked a lot about what's been going on lately, but also with the time to reflect as well.

• I miss my boys. Their smiles. Their cuddles. Their cheekiness. Their smells.

• How much we needed this. To decompress. To just be us. To not be Mum & Dad for just a few days.

The other thing I realised is how much I like spending time with my hubby. How nice it is to snuggle up on the couch and just enjoy his company. Whilst we do this at home, it's always with the nagging thought that the toys need to be picked up or that washing up needs doing. Though perhaps when we do it at home, it is more like we have both fallen in a heap and we are just propping each other up!

And whilst this little weekend away went way too fast and is unfortunately a distant memory only a month after we have had it, I am so glad that we went.  It was amazing to celebrate a massive milestone in our marriage.  Something lots - and almost ours too - don't make it to.
Kelly xx

The blog I really don't want to write

OK, so I don't want to write this.

I have been procrastinating on doing it for the last week. OK, maybe 2.

I kinda feel like putting it on paper, correction - on the screen, makes it all real.

But I feel it's only fair that I let you all know how the rest of the assessment went. That I do you that service.  

After spending 3 hours with a psychologist on the Monday, being asked obscure questions about things that happened particularly between the years of 3 and 4, we came away with a sense that she knew what she was talking about and we felt heard. 

At least I didn't come away questioning whether I had breastfed too much, or not enough. Or hadn't been hard enough on him. Or maybe I had been too hard. Maybe I cuddled him too much, or maybe not enough. Or maybe. Or maybe. Or maybe.

 It did make clear that I had blocked out a lot of the years between 2 and 4 quite successfully, and it was only going back and reading old posts on a forum that I used to vent my frustrations on that helped me remember just how shitty it had been.

The most hilarious thing was the next day, getting to watch D go through his actual assessment.  I reckon the psychologist nearly turned us around halfway down the hallway to the room - going "enough, I've heard enough. Yep, diagnosis granted". Sadly, it wasn't quite as simple as that.  We got to watch through a one way mirror.  It was all I could do to not make "Law & Order" references all the way through.

And whilst watching him and delighting in how amazing and intriguing he is, it occurred to me that he spent the whole time moving.  That he does not stop. And that this is pretty normal when he's not engrossed in lego or minecraft related things.

In the end, we are confirmed that he meets criteria for an ASD (Autism Spectrum Disorder) diagnosis.  We are also informed that he meets criteria for an ADHD (Attention deficit hyperactive disorder) diagnosis as well.  We had been expecting the ASD diagnosis, that's what we were there for.  The ADHD, not so much, even though that's what the Paediatrician had been suggesting all along, and not seeing the ASD that we saw.  

And since this blog has actually taken me 3 weeks to write, then it has occurred to me that it's taken me a little longer to process than I first thought. It does throw us into a new time of getting D the help that he needs to make things smoother for him.  In this somewhat familiar territory having been in ASD land with J for pretty much 12 months to the day, it's also vastly different as there is no developmental delay to contend with at the same time.

If I seem a little distracted, then my apologies. There's a lot going on at the moment. Feel free to be blunt with me if there's something I should have done and I haven't. But also, feel free to drop in for a cuppa - just don't expect my house to be tidy!

So there we have it. It is done. It is written. 

Much love
Kelly xx