Why more people need to understand Autism

I was at a course on Friday, that was headed up by Tony Attwood, one of the leading minds in Autism, and Michelle Garnett, his amazing and generous partner in crime.

What struck me though was that everyone in that room, which I'm guessing was about 200, was there because they already had an interest in Autism, or it had touched their lives in some way, whether they were a teacher, LSA or a therapist.  There were also many parents there too.

The thing is, as I sat there, a lot of it information that I have heard before, it occurred to me that the people who needed to hear a lot of what was being said, were not in the room.  More than likely, they have never heard of Tony Attwood or Michelle Garnett and had no idea this course was even on.

These are the teachers who are still in the schools who have no flexibility of thought that perhaps the way that they view the world may not be everyone's experience of the world, and that is so much bigger than autism! That's with so many variables, even down to whether you are female or male.

They are the parents of children who are neurotypical, who have not ever had any direct experience with the child in their kids class that's the one who's always getting into trouble, or is doing odd or weird things.

These are the family members who dispute a diagnosis instead of finding out about it, coming alongside your family member and helping them navigate a really tricky road without the presumption that they know better.

I hope that as we use growth mindset tools in our schools that this trickles out to the adults of the world who are stuck in one-dimensional thinking, that the way they experience the world is the only way.

Because, when we take a little time to peel back the layers, we find that there is always room to learn, grow, make mistakes and learn to apologise along the way,

What you don't see

To the teacher I took my cranky out on this morning, 

firstly, I want to apologise.

You see, I do get that we are just one family in the school and you have so many more to look out for than just us.

What you don't see though, is the hours of prep that we do around things like excursions.

The thinking and planning for a parent with kids that don't fit the typical mold to do something that is outside the square is huge.

It's the prep around firstly whether my child will go ok on this excursion.  Will they be well behaved, or is it going to be hugely stimulating and will he not be able to regulate?  Will you be able to keep him safe in an unfamiliar environment? Will the lower verbal child be able to participate fully? Will

Do I not sign the permission note and keep him home instead of risking the circumstance where you turn your back for a second and he's gone? 

And does that make me a bad parent for even considering this option and not giving him the opportunity to step up to the challenge. Or does it make me wise in recognising the potential limits here?

So when I sign a permission note, there is already so much thought and consideration having gone into it. 

This means talking about the excursion, what might be different, what they might like, what might freak them out. What the potential risk factors are. What extra tools might we need for this excursion? What do we not need for the normal day?

And then.. you ask me to come along as well. 

You want me to come because you are concerned about some of the behaviour one of my children has been displaying. You are concerned that he's not going to be compliant. I get that. I get that because it's something I've already concidered and already been concerned about. 

However this adds another element. Will it actually be beneficial for me to be there, or will it make it worse, because then there are 2 authority figures and maybe the rules are just a little different when you are with mum than they are with school, because school needs to keep everyone safe, not just the family. 

This also means arranging a day off work. Rearranging clients who in this instance are not mine, and another company's staff around your excursion.  

So, when you cancel an excursion at the last minute, and don't feel that informing the key families that you know this will affect the most, then yep... I get a little pissed off.  

And I get it, it's hard to make the call you need to and let everyone know, but when my dentist can send me an auto generated text that my kids are due for their 12 month checkup, this is something we seriously need to do something about. 

Lets not forget that it's Week 8 of term 4. I'm tired as I'm sure you are. My ability to adapt and change reduces and the stress of the year really weighs on me. I have fought the battles of lego going to school for the year and the regular meetings where I'm told how important communication is so you can factor in what's going on at home.

This just feels like it needs to be a two way street. 

Yours sincerely
Kelly xx

Me

Hi

Me.

I am a mum to 2 boys.
I am their carer
I am their therapist.
I am their OT, speech therapist, psychologist
Sometimes I'm their paediatrician
I am their soft place to land
I am their advocate
I am their place for hugs when days are tough
I am their executive functioner
I am the one who joins the P&C so their needs are considered
I am their nutritionist and dietician
I am the one who goes head first into helping solve a meltdown when everyone else walks away
I am the one who juggles as much as she can to help them be the best they can be
I am there to laugh at their jokes
I am there to blow fart noises on my arm
I am the one who is looking for ways to help them
I am the one who loves hard

I am the one that sees them for their potential, and not just their diagnosis.

I am Kelly. Mum to Declan and Jonathan. Kids who are awesome, and happen to have autism too.

Meltdown from a Mum's perspective

Meltdown.....

A word that has become apparently interchangeable with tantrum. Which annoys me. Because while a tantrum can certainly run into being a meltdown, they are two very different things. I'm not quite sure when they became interchangeable, but it makes it hard to be really clear about what's actually going on when you are looking at a situation.

In our house - a meltdown is losing all control of your ability to rationalise.  It means big behaviours and often lashing out physically.  Our amazing psychologist calls it "flipping your lid" - when your brain stops using the developed front part, and goes into the primal brain where all it sees is threat and needs to respond by either fight, flight or freeze. 

A tantrum is when someone just doesn't get what they want.  It's a response to being told that they can't have something, or something doesn't go their way.  We have those too in our house.

And here comes the kicker, sometimes a tantrum becomes a meltdown.  It stops being about the issue ans it goes into being so overwhelmed that all the skills that the child (and sometimes the parent!) has to keep themselves on track stop working. They have used every tool in their toolbag and this is their last one left.  

One of the interesting features in our house is that Declan stays very verbal through this.  And so sometimes, I miss that we have moved from being arguementative, into meltdown mode, where I need to stop talking to him and just do what we need to do to get through. 

Now, meltdowns are not limited to those in the Autistic world.  We have all seen neurotypical kids have a meltdown when they are tired or hungry and feel that they are unable to have their needs met. The thing that does make it different in the Autistic world is that sometimes, it's really hard to work out what happened to set it off.  Or, know how hard they have been working leading up to a meltdown, when we are just delighted to have a child that seems to be coping beautifully in what we had expected to be a hard situation.

The other side of it, is the toll it places on the parent. As a parent of a child with big behaviours in their meltdowns, I really struggle with the emotional toll that it takes to work through a meltdown.  They leave me exausted and with a whole heap of adrenalin pumping through my veins. I can only imagine what it does to his system! I know that I need to be gentle with myself after one and do something that nourishes me, whether that's a cup of tea or a chat with a friend who will let me download.

These are some of the things that I try and remember when we are in meltdown mode:

• It's not about me.  The things that get said and get done are not actually about me. They are pressure release valves.
• Don't join in the meltdown. My job is to guide through it and provide a safe place to land. Sometimes this is easier said than done!
• People looking on are not my concern. They can think what they like, and it has nothing to do with me.
• Being ready for the meltdown to be over and ready to embrace the emotional damn breaking as the thinking brain kicks back in.  Sometimes this is really hard when it's been a particularly violent or long meltdown.
• If I have both children with me, ask for help if at all possible.  Being concerned that Jonathan is going to run off while dealing with a meltdown from Declan escalates my anxiety and reduces my ability to deal with the meltdown appropriately.

Hope this is helpful

Kelly xx

Out of the mouth of babes

We recently went on a holiday. Our first one is 5 years. The last one was when Jonathan was 5 months old, and we went to Armidale for Chris's graduation then went to Coffs Harbour for a week at the beach. Chris's parents came too.

Anyway, I digress.

Our last holiday, we went on a cruise. I must confess I was really nervous about how the kids were going to go. But overall, they did really well and loved the adventure.

On the last morning, we needed to be out of our cabins by 8am so we could be off in the first disembarking group.  After repeated late nights, it was a morning when a few in our cabin were keen for a sleep in.  Actually, only one.  Declan.

I had the fortunate experience of waking when the sun got up, no matter when that was while we were on the ship, so I had been awake for ages and was getting a bit antsy.

We had to wake Declan up. 

This did not go down well.  He was tired, probably in the middle of a sleep cycle and generally unhelpful. 

Ultimately after getting highly frustrated with him, since we had a tight schedule to get out by, and getting to the point of him needing to put his shoes on, I muttered the words "will you hurry the F*ck up?"

And then it happened.

Without missing a beat, and I'm sure repeating something that I had said to him before, and with the straightest face ever, these words came from his mouth:

"we don't say F*ck in our family"

Now.... I can see how funny it is. At the time, not so much. 

Kelly xx

Halfway through

We are now halfway through term one and I thought it was probably time for a little update.

As most of you would know, the year started with a very anxious me.  Quite concerned about how things would go and how Jonathan in particular would settle and be accepted.

Whilst the first few weeks haven't been 100% smooth sailing, they have exceeded my expectations.  We did turn up on the first day to find that there was work going on in the safe part of the playground that had just been fully fenced so that the Learning Support Unit kids have an enclosed place to play. This included temporary fencing.  TEMPORARY BLOODY FENCING! To say I was less than impressed was an understatement. All credit to Jonathan's teacher though, she got it sured up and for those 2 weeks made sure he was shadowed closely.

I also lost it big time on that first day. It was crowded and lots of noise.   Trying to keep track of Declan in all of it, and Chris having Jonathan and them not being able to find Jonathan's teacher, with my already pretty high anxiety about how things were going to go, just tipped me over the edge.  Not my proudest moment standing in front of a full school absolutely bawling. One thing it did seem to do was show Jonathan's teacher that I'm not an overbearing parent, but one that was really (and still is a bit) anxious about leaving my child in their care.

Fast forward 5 weeks in, Jonathan has taken to school like a duck to water. He's loving the learning and the other amazing little people in his class.  Having such a small class to model off is really beneficial. He is now doing pre writing activities and really loving numbers and letters. The whole class has started some intergration in with the 1/2 kids. His language is coming along, which I also think is contibuted to by the small group peer modelling.

We are still struggling to get people to close gates behind them, but we are slowly educating parents on why we are doing it. And I'm sure they don't want to be responsible for anyone's child getting out of the school!

As for Declan, well, he's settled the quickest this year than he has ever settled.  We are blessed to have his Kindy teacher again this year who has masses of special needs training and is just a beautiful soul. She has a beautiful relationship with Declan and also with me.  My hope this year is to be a bit more hands off with school around Declan, and that's happened already.  They are implementing really effective cool down strategies with him, that to begin with required me to model, but the school have taken these and run with them.

Over the next week or so we are setting goals around both the kids education, and I will hopefully get a fuller picture of how things are going, but at the moment, all is looking positive.

Kelly xx

Tomorrow

Tomorrow we start a whole new chapter in our lives.

One that entrusts our youngest son into the schooling systems hands 5 days a week. Into a specialised class for children with disabilities.

To say there is nothing I am concerned about in that would be a lie.  There are lots of things. 

I'm concerned that he is going to get lost within the school and he won't be able to tell people where he is supposed to be. Or even his name for that matter. Let alone the idea that some forgetful person, or someone who is lazy or just careless props a gate open and he is able to get out of the school grounds.... then who knows what will happen.

I'm also concerned about how the other children will take to him, being so delayed.  Will they simply see him as someone who should still be in pre school? Will they get to know him? Will they take the time to see the amazing little boy that we know. 

I already get the sense that the teacher thinks I'm overbearing. She's met me now twice and that's the distinct sense I get.  She may just have to get over that.

This is a whole new world of disability education, over integrated learning with support, like what our elder son is doing, and doing very well at.

The amount of dreams that I have had the last week about school and what is likely to happen (or in some cases, highly unlikely) is just astounding. 


For now, I must trust. I must trust the teachers who are highly skilled to look after and teach my children.  I must trust that they will work out the kinks quickly and easily. I must trust that above all else they will have the children's safety as paramount. 

I must trust.

I must yield to the new path that is being created. 

People are asking me what I will be doing with all the time I will have on my hands. For the next week, I am probably going to spend it worrying. Anxious that they are doing ok. That they are fitting in, being cared for, being kept safe, being......good, for want of a better word.

I'm sure this will pass as my evidence builds that they are ok.

For now though, I sit with my feelings as they are. Honour them. Acknowledge them. And pray that God knows my anxiety and will cover us with His grace.

And possibly have a glass or two of wine before I retire for bed. Praise the Lord for wine!

Kelly xx