I will not "Light it up blue"

It must be nearly April, because my news feed is littered with calls for people to "Light it up blue for Autism Awareness". 



To be honest, it makes me cringe. 



There is heaps of "Autism Awareness" going around. It's what causes students at my kids school to "joke" and "tease" by saying things like.... 'don't do that, it makes you look Autistic'. 



No. My kids don't need #AutismAwareness- they need #AutismAcceptance. 



Accpetance is different than awareness. Acceptance means that everyone is worthwhile, no-ones neurology is made fun of, and everyone gets the support they need without having to fight legislators to provide it. 



This April I'll be advocating for Acceptance. I won't be supporting the Autism Speaks driven light it up blue campaign that raises them money to research to find a cure. 

I won't be buying a Build-a-bear blue bear so they can give money to Autism Speaks or Autism Awareness Australia either. 


Here in Australia, many people have heard of Autism Speaks, but feel we are removed from their influence and do not need to weigh in on the stand against them. 



I disagree. For two reasons.



1. I do not want AS to assume that because Australians are not speaking up against them that they are welcome here.



2. We already have our own Autism Speaks here, in the form of Autism Awareness Australia. 



Australians, please do not be fooled into thinking that we are safe from the Autism Speaks message here. 

You only need to watch Autism Awareness Australia's awareness video to hear it....

.

.... use of pathologising language ("complex neurological disorder", comparing Autism to aids, diabetes and cancer,etc) 



..... the "Autism is a tragedy" dialogue ("...improve the lives of families with Autism", "Autism is stealing the minds and personalities of a generation of Australian children", "30,000 Aussie kids have been kidnapped, by Autism", "don't let Autism have the last say in a families life")



Image is of a young Autistic girl with blond hair wearing a hat and smiling.
The background is purple, and text reads
I need your ACCEPTANCE much more than I need "Autism Awareness"

I will not support an organisation that sends out the exact same message Autism Speaks does. 



I will not support an organisation that tells my family, friends and colleagues that my life is difficult because of my children and that their lives are hopeless unless people donate money to save them.



I will not change my mind about supporting Autism Awareness Australia until this message from them changes. Not even if you point out that they are doing a few good things along the way. The harm their message does to my children is real. The damage their message causes to the possibility people will accept my children as valuable the way they are is immeasurable.

And this..... THIS ..... is why the "Autism as tragedy" message of Autism Speaks and Autism Awareness Australia is so damaging..... because it leads to this:



"When I am open about being Autistic, I am handing people a weapon to punish me with. This was not the first time that my autism has been invoked during a disagreement. I have ended up leaving so many communities because I was told that I was only disagreeing because my autism meant I didn’t really understand. I have been told I am having an unreasonable meltdown when I am calm and polite but the other person is agitated and using curse words. Anytime someone wants to dismiss my opinion or experience, they point out that I am Autistic, as if that trumps anything and everything. They remind everyone that I am not reliable, that my word means nothing, that I don’t understand anything.



"Telling people that I am Autistic gives them the opportunity to understand me better. It also gives them the opportunity to dismiss anything and everything about me as irrelevant, deluded, pathological, unacceptable. No one has to provide a logical counter for anything I say because my words are Autistic words so they mean nothing. They are merely symptoms and can be disregarded." 


     Sparrow, from Unstrange Mind. 



Is this what you want for your children? 



Really think about it- how would you feel if we took a month of the year to promote that everyone be aware of you and the fact you need fixing???? 

No? 



Then let's change the message. 



My kids don't need curing. They don't need fixing. They don't need changing. 



It is society that needs to change, and Acceptance of all is the key.


Note: this article has been republished at The Huffington Post. Click here to view.

To stim, or not to stim? ..... there should never be any question

When I am stressed I count my fingers in pairs by tapping them against each other in a pattern from pinkie to thumb over and over and over again. I do it subtly, so no one sees, because I don't want them to know I am stressed .... or nervous... or worried. I sometimes do it when I am bored too.  If I am alone and no one is watching I sometimes trace a pattern around my lips with my fingers. Usually doing these things helps calm me. It occupies my mind and gives me a soothing feeling. If they don't work I might start bouncing my legs a bit or get up and pace. 

All those things are stims.  And I bet you stim too sometimes.  A lot of people assume that stimming is something only Autistic people do, but this is just not true. We might notice an Autistic persons unfiltered stimming more than we notice other peoples, but we all stim.  

I have written a little about stimming before on my blog Different kinds of normal, and some of what I quoted there I will repeat here:

Nick Walker defines stimming this way-

"To stim is to engage in movement and/or in other activity that stimulates one or more of one's senses, for the purpose (whether intentional or purely instinctive) of regulating one's own sensorimotor experience and/or state of consciousness. Examples of stims include (but are certainly not limited to) such activities as rocking, hand movements, humming, drumming, touching a surface, or gazing at running water. Functions of stimming include (but are certainly not limited to) self-calming and self-soothing; inducing, enhancing, or responding to experiences of sensory pleasure; regulating sensory input; integration of information; and accessing specific capacities and/or states of consciousness."

The Caffinated Autistic says

"It is a message that says that I have so much to express and cannot hold it all inside and I must show you right now.
It is joy.
It is an all-encompassing feeling that touches every part of me, from the top of my head to the bottom of my feet.
What it isn’t is shameful."

FY Stimming! gives definitions and examples of stimming, including this quote from About Autism-

"Stimming is almost always a symptom of autism, but it’s important to note that stimming is almost always a part of every human being’s behavior pattern. If you’ve ever tapped your pencil, bitten your nails, twirled your hair or paced, you’ve engaged in stimming.
"The biggest differences between autistic and typical stimming are (1) the choice of stim and (2) the quantity of stim. While it’s at least moderately acceptable to bite one’s nails, for example, it’s absolutely unacceptable to wander around flapping one’s hands.
"There’s really no good reason why flapping should be less acceptable than nail biting (it’s certainly more hygienic!). But in our world, the hand flappers receive negative attention while the nail biters are tolerated.
"Like anyone else, people with autism stim to help themselves to manage anxiety, fear, anger, and other negative emotions. Like many people, people with autism may stim to help themselves handle overwhelming sensory input (too much noise, light, heat, etc.)."

So, if we acknowledge that stimming is a form of sensory regulation that everyone engages in and that it serves a useful purpose.....................

the question should never be whether or not we let our Autistic children stim,
but rather how will we support them and encourage others to accept their stimming?

To figure out the best way to help others accept stimming as normal, we need to look at what purpose it serves for our individual children. For me stimming is a stress release. For my MissG stimming is both a stress release and an expression of excitement. Watch your child and see what is happening when they are stimming. See if you can figure out what is going on for them. If they can talk ask them to tell you!!

Then tell your childs teachers and therapists/ your relatives/ your friends/ whoever-is-saying-your-child-shouldn't-stim that stimming serves a purpose and that you do not want them to tell your child to stop! And don't forget to point out that everyone does it!

As our children grow older they might notice other peoples reactions to their noticeable stimming. This has happened recently for my boy, and so we discussed his options. He decided to try for a quieter stim at school, and to do his noisy vocal stims only at home if possible. He decided this because he noticed he felt more stressed when people looked at him and so the stim wasn't "worth it" in that context. We talked about other things he could do that were more subtle and he chose a few alternatives to try. I'm cool with that for the most part. I do think it's sad that he had to consider these things, but he was ready to, and the decision to change what he was doing was all his. And that is how it should be.

Our children should have control over the decisions about their body and how they behave.

If they want to stim, they should stim- however they want to.

There should never be any question about stopping a stim because it is "socially inappropriate" or "makes others uncomfortable".

Cynthia from "Musings of an Aspie" has written some very helpful things about this, which I'm going to quote because 1. she's Autistic and her voice is more important than mine on this topic and 2. she says it so well!! and 3. If you need to talk to teachers/therapists or relatives/friends about stimming Cynthia is an excellent person to quote.

Cynthia wrote a whole article called "Socially Appropriate", in which she says,

"Oh, wait, I know: socially inappropriate stims are ones that draw attention to us. If you rock in public, people will stare.
And whose problem is that?
Try out these sentences instead:
If you sign in public, people will stare.
If you use your wheelchair in public, people will stare.
If you limp in public, people will stare.
If you use your assistance dog in public, people will stare.
And if people do stare, other people will think they’re rude. Who would tell a Deaf person not to sign in public or a paraplegic not to use their wheelchair in public?
But people tell autistic kids not to stim in public all the time. Again and again I see conversations and articles insisting that stimming–or if they’re trying to be politically correct, certain types of stimming– isn’t appropriate public behavior.
Really? And why is that? Who exactly does stimming embarrass? Not the autistic person who’s doing it. (emphasis mine)"

And from "A Cognitive Defense of Stimming (or Why "Quiet Hands" Makes Math Harder)" ,

"There is another argument against stimming at school or in other public places: we need to teach autistic kids socially acceptable behavior so other kids/people don’t think they’re weird. Well, I have two things to say about that.
"Yes, autistic children should be taught the same social rules as typical children. They should be taught to respect others and all of the rules of politeness and civility that go along with it. But here’s the thing: I was an autistic kid and I can tell you for certain, stimming or not, the other kids already think we’re weird.
"Instead of insisting that autistic children adopt unnatural behaviors for the sake of social acceptance, how about working toward changing what is socially acceptable?"

#LoveNotFear Flashblog

This blog post is part of the Flashblog presented by #BoycottAutismSpeaks as part of their #posAutive campaign. Details can be found here.

Love Not Fear

Early on in our relationship my Wonderful Hubby and I agreed that we wanted to have a large family.  Our first pregnancy was unplanned, but our daughter was certainly not unwanted. We were young and brave and a little bit naive as we began our journey into parenting. It was a rocky start. We had some tough times. 

After 3 years together, we spent some time re-evaluating our priorities and determining our intentions. We decided we wanted to have 6 children, and that we were committed to making sure that as our family grew we would structure our careers, our volunteer activities, our lives so that one of use would always be available to be the primary carer for our children. 

Our daughter by 3 years old had grown to be an energetic and creative soul, who seemed to struggle with anxiety but had such a determined spirit and shared her fathers great sense of humour. 

We added number 2- a quirky little guy with a winning smile and a happy disposition who hardly spoke and seemed to struggle with sensory input. 

Number 3 arrived a non-sleeper who loved intensely and had compassion for others like I've never seen in a toddler. 

We were tired, and busy, and still young- so we decided to stop a while and see how we felt about more kids in a few years. Around this time we learned about Autism through a friends journey and became pretty sure that MasterL was Autistic, but fear of what that label would cost him in society led us to put off seeking a diagnosis. 

Then there was another unexpected pregnancy. This one ended at 12 weeks with the loss of our little one and the realisation that we had unquestioningly wanted this little life to join our family, even though we were not planning for it. So we began again in our intentional quest for that large family. 

Number 4 arrived- a sweet little girl who adored her Daddy, her family and life in general.  

It was around this time that Hubby began to noticeably struggle with his mood. We were separated for a few months during this year. I struggled with my fear that him returning to live with the kids and I would be too hard, but love won, and we have not looked back since the time we made our second conscious decision to partner with each other . 

Number 5 arrived. A bright and active little girl who so desperately wanted to get into everything, had no sense of danger and experienced significant sensory challenges from the day she was born. 

So we paused again to evaluate. Could we support our girl sufficiently if we were also caring for another new baby? Did we have the resources to provide what she and our other children needed if we had a 6th child arriving? The answer was no. MissG, as you regular readers know her, needed my full attention. She needed me to be available to help her navigate the difficult world she was facing. We decided to wait again and see what the next few years brought us.

In the 5 years after MissG joined our family MasterL was diagnosed Autistic, Wonderful Hubby was diagnosed Bipolar, MissG herself was diagnosed Autistic and at 17 years old E was diagnosed Biploar.  

People felt sorry for us. 
People said how hard our lives were.
People said how brave I was. How strong I was. 

I felt sorry for myself sometimes. 
I struggled to overcome the feeling of overwhelm I experienced. 
I felt anything but brave and strong.

I made the mistake of listening to the mainstream discourse that said my life was difficult and my children were hard and my family was just going to be a statistical casualty in which my Autistic children would grow up to be less-productive-less-happy-less-than than others and my Bipolar family members would not be able to work and would end up committing suicide. 

I listened to fear. I felt fear. And for a short while I cultivated fear.  I let the "what ifs" rule my life. What if I can't cope? What if others in the family can't cope? What will people think of me having another baby knowing the chances are that child will have a disability?  What if a new baby is disabled? 

I battled my desire to have the 6th child I so wanted.  And then I stopped. Mostly because I was too tired to keep the battling up. Fear was making me tired. Fear was making me stressed. Fear was causing me to worry about things that hadn't happened. Fear was making me my own enemy. 

I realised that the diagnoses my family members had received were a gift that gave us power. To know who you are is powerful and empowering. To find your tribe is strengthening.  To learn what supports you need to succeed is life changing. 

I realised I had been given the key to being what my family needed. The information about who they are is a precious thing. It gives me the knowledge I need to go and find out how best to help my family. 

I realised I have the ability to choose fear or love. 

And I choose love. 

With choosing love comes choosing acceptance. 

With choosing acceptance comes peace. 

Peace in my heart. Peace in my mind. Peace in the core of my being. 

I am content. 

I would not change a thing about my life. I would not change a thing about my family.

Oh, there is a lot I would change about the world. But my family is fine just the way it is.

So in the end the choice to fall pregnant again was an easy one. All it involved was love. 

Could I love another child? Absolutley. 

Could the rest of the family love another child? Without a doubt.

Could I provide support to another child, no matter what that childs support needs were? Yes, and I was, and remain, completely willing to do that for all my children no matter the cost to me. 

So Number 6 arrived. A boy. My first Caesaren after 5 natural births! Our biggest baby born at 4.5 kgs (9.9 pounds). A snuggler. A smiler. A joy to us all. All the older children adore him. He adores them. 

On his first birthday I was shown a blog I'd not seen before, and I read this. 

"..........Autism isn't something that happened to me.

It is something that I chose when I decided to become a

parent, knowing that my child's future was out of my control.

I may not have understood that then, but I do now."
(full article here)

I immediately read it out loud to my Wonderful Hubby, and I bookmarked the blog and copied the quote into this blog post. Because I get what she is saying, and it is true for me too. 

There was a point in my life at which if you had told me I would have a Biploar husband and daughter and Autistic children I would have intentionally chosen a different path. Because I didn't know any better. And at that point fear would have robbed me of the wonderful life I have now. At that point I had an idea in my mind of what marriage, relationships, parenting would be like. I know now that no matter who I chose as my life partner and no matter who my children turned out to be that idea was wrong.  None of us can predict what our lives will be like. None of us know when we choose to have children who those children will be and what will happen in their lives. It is a risk every single time. 

My first 5 children were born before we officially knew the names of the challenges our family would have. My 6th child was born when we did know. As it turns out, the decision to have him in our family was just as easy as all the others. Because we made it from a place of love not fear. 




Yes. I choose love. 

Every. Single. Time.

Autistic people have the same rights as everyone else

Did you know that in the past few weeks in America three Autistic people have been murdered by their parents? 

Their names are Randle, Damien and Vincent. 

The news reports about their deaths consistently focus on the fact that they were Autistic and bemoan the plight of the killers. They make statements like *difficult to care for*, *parents exhausted and struggling to find services* and *this was an act of love*.

This is not excusable because their parents found caring for them hard. 

This is not understandable because their parents needed more support. 

Violently ending your sons life is not an act of love. 

This is not OK in any way.

Randle, Damien and Vincent were human beings with rights who were murdered by the people they trusted to protect them. 

This has to stop. 

We must stop referring to Autism as a disorder separate from the person. 

We must stop calling Autism a tragedy that steals children away from their parents and ruins whole families lives. 

We must stop sympathising with murderers.

We must start calling out those who do. 

This is not OK. 

Autism is a neurological divergence that exists within the wide range of what is normal for humans. 

Autistic people have the same rights as all other people. 

As Amy Sequenzia  says, "Autism rights are human rights". 

Autistic Kids back to school checklist

The first day of school is so nerve wracking for all kids. There are lots of things we can do to help ease the nerves, though. Here are the things we do to help my kids prepare:
My Autism specific back to school checklist. 

*Note: Two lists follow. One is for younger kids and one is for older kids. There is some repetition in them, as some of the things are the same for all kids. However there are differences too, so even though the lists look similar it is worth reading both if you have kids in both age groups.

                        

For younger children

Make sure their clothes and shoes are comfortable

If your child can wear clothing and shoes of their own choice to school this is easier.  

My children need to wear a school uniform. Fortunately both the schools my kids attend are reasonably flexible with the choice of pants and shoes, requiring a certain colour, but not a set style or fabric, so we can choose the pants and shoes the kids are comfortable in from a selection at our local stores. 

Their shirts, however, are set and sourced by the school and have thick seams, logos embroidered in the chest area and are a thick textured fabric. Most kids just see the shirts as a polo shirt and don't have any trouble wearing it, but my kids find them really scratchy, the seams uncomfortable and the back of the logo against their skin downright irritating! 

We have solved this problem by having singlets and undershirts they have chosen for comfort to wear under the uniform shirt. It is important to resist the temptation to just buy whatever other kids think is cool or trendy. My kids are much more concerned with comfort than what is cool, and there is nothing wrong with that!

Let them help choose their own bag and equipment

When it is time to choose a new school bag, pencil case, lunch box and stationery supplies I involve my kids in all the decision making. 

It is important that kids know they are comfortable using the items like bag and lunch box because fine motor co-ordination can be tricky and if we can eliminate trouble opening and closing things and discomfort wearing bags, that means less sensory irritation and frustration in what is already a full on job of coping at school every day. 

My daughter really likes everything to be her favourite colour. It is important to her because she likes it that way, and because she can then easily identify which things are hers. 

Make sure you have food to give for morning tea and lunch that they will be happy to eat

It might sound obvious, but it is so important that we include familiar and favourite items in our kids lunch boxes. 

There is nothing wrong with packing the same lunch every day if you know your child will eat it. 

Do not expect your child to try something new in their lunch box. There is enough to cope with in a day at school without challenging their taste buds too. 

For the first term of last year my daughters lunch consisted of the same things every single day. By term two she had noticed some things others were eating that she wanted to try, but we made sure to try them at home first. 

My daughter also finds it easier to cope in the day if she has a lot of crunchy food to eat- crunching acts as a stress release for her so things like rice crackers, apples and carrot sticks are a staple. 

Prepare Safe Hiding Space tokens and make sure your child knows how to use them

You can read about the Safe Hiding Space and tokens here.  In summary, the Safe Hiding Space is a predetermined place the child goes to calm down when they are feeling stressed or overwhelmed. The tokens are used as a way to gain permission to go, and to alert the teacher the child is stressed, that does not require the child to speak or explain what they need. 

Ring the school the day before - ask to know who the teacher will be on the first day - ask to speak to that teacher. 

For my daughter it is super important that she knows what to expect before she gets to school, and who to expect to be there. 

I ring the school on the day before she goes while the teachers are there preparing and ask to speak to whoever will be with her on the first day. 

In our school the class allocations are unfortunately unable to be finalised until a couple of weeks into term as the teacher assignments aren't finalised until a student number census is taken. This means we have to prepare our daughter for the chance her teacher will change, but knowing who she will have on the first day does a lot to help ease her anxiety. 

I also ask to speak to the teacher and tell them about how my daughter is likely to react hen stressed, some key phrases the teacher can use to make sure she is understood by my daughter and I tell them about the Safe Hiding Space.

Plan to be at school early - bring your child to see the classroom and meet the teacher while the room is still empty and to set up a Safe Hiding Space 

Arriving early allows your child to look around the room and meet the teacher before there are lots of other people present making noise, moving around and generally providing sensory challenges. It also means your child can find their desk if the teacher has already allocated them, and check where to put their bag and other things. 

Give your child the words and strategies they will need when they feel overwhelmed

Classrooms and playgrounds (especially playgrounds!) can be tricky to navigate. Things can go wrong very quickly if you have trouble reading social cues and understanding communication. For many Autistic people words become increasingly difficult when things are going wrong. It is important that your childs teacher knows this and is prepared to be patient and allow your child time to process when necessary. Other children, however, may not be able to do this so easily. One way you can help your child is to help them learn key phrases to use when they are struggling to express themselves.  

My daughter has learned to say "stop it- I don't like it" , "I will tell the teacher" and "I need help". Choose phrases your child understands, make them simple and practice them a lot. Let your childs teacher know what the phrases are so they will be able to recognise when your child is using them they are likely stressed or anxious. 

As the year goes on your childs teacher will learn your childs "tells" and communication style, and they will develop between them systems that work well in the school setting, but for the first few days or weeks things like this will help both of them as they get to know each other. 

                               

For older children

Make sure their clothes and shoes are comfortable

If your child can wear clothing and shoes of their own choice to school this is easier.  

My children need to wear a school uniform. Fortunately both the schools my kids attend are reasonable flexible with the choice of pants and shoes, requiring a certain colour, but not a set style or fabric, so we can choose the pants and shoes the kids are comfortable in from a selection at our local stores. 

Their shirts however are set and sourced by the school and have thick seams, logos embroidered in the chest area and are a thick textured fabric. Most kids just see the shirts as a polo shirt and don't have any trouble wearing it, but my kids find them really scratchy, the seams uncomfortable and the back of the logo downright irritating! 

We have solved this problem by having singlets and undershirts they have chosen for comfort to wear under the uniform shirt. It is important to resist the temptation to just buy whatever other kids think is cool or trendy. My kids are much more concerned with comfort than what is cool, and there is nothing wrong with that!

Let them help choose their own bag and equipment

When it is time to choose a new school bag, pencil case, lunch box and stationery supplies I involve my kids in all the decision making. 

Sometimes my son says, "you just choose Mum" which is fine, but on some things he wants very specific items, so we buy those. 

It is important that he knows he is comfortable using the items like bag and lunch box because fine motor co-ordination can be tricky and if we can eliminate trouble opening and closing things and discomfort wearing his bag that means less sensory irritation and frustration for him in what is already a full on day of coping at school every day. 

Make sure you have food to give for morning tea and lunch that they will be happy to eat 

My son packs his own lunch these days, but I make sure to ask before I do the shopping what foods he would like and make sure they are available in the cupboard for him to choose from. 

He eats very little while at school, which used to worry me, but now I realise he is not relaxed enough at school to be able to eat much. It would stress him more if I started insisting he eat a certain amount at school, so I just provide a choice of healthy options that I know he likes for him to take. 

He eats an enormous afternoon tea when he gets home which is part of his afternoon routine and helps him de-stress once he is home, then is ready for dinner soon after. He also eats quite a large breakfast. 

Ring the school the day before and ask to know who their year advisor will be - ask to speak to that teacher

At my sons High School they have a system where each grade had their own year advisor who is a point of contact for the kids to go to if anything is wrong. The year advisor keeps an eye on things, gets to know the kids and acts as a support for them in many ways. 

At my sons school the year advisor is allocated in year 7 and stays with the kids all the way through high school, to the end of Year 12. So, unless she leaves the school, he will have the same person to go to right the way through high school. This is great for him and for me because it means she has come to know him very well and he is comfortable to go to her if he needs help. She and I have developed a positive relationship and I can ring her to chat through things and know that she will raise concerns I have with the relevant staff members and will check on him more frequently if I alert her that he is having a problem with anything. This relationship has been especially valuable since the NSW government removed my sons individual support funding under the ironically named "Every Student Every School" policy. 

If your school has something similar in place it is a good idea to touch base with your childs year advisor at the beginning of the year for a chat about things such as elective subject selection and allocation, timetabling questions, sport selection (the schools process for this is very difficult for my son to manage), and any friendship issues you are aware of.  Don't be hesitant to use the year advisor as a first port of call for all these sort of things- it is their job!

If your school does not have something like this, they may have a roll class teacher, Welfare Officer, or an Assistant Principal who can fill this role. 


Prepare a one page summary of your childs needs and strengths for their year advisor to distribute to all your childs subject teachers

Each year I send a one page summary of my sons needs and strengths to the year advisor and she distributes them to my sons subject teachers. I include information like what he might do if he is experiencing sensory overload and explain things like the fact he often won't look teachers in the eye/face but this doesn't mean he is being disrespectful. An example of a letter I sent a few years ago can be found in an old blog post here.

Make sure your child is familiar with the route they will travel to school and is confident to use whatever transport methods necessary

My son catches the bus to school. We are lucky to live right next door to the bus stop and that the bus drops him off outside the school without him needing to change busses along the way. Getting to school is not too tricky. 

My son relies heavily on routine though, so if the bus to come home is running late or the busses at the school arrive out of their usual order this can cause a problem. There have been a couple of times when my son has boarded the wrong bus and not realised until a certain amount of time has passed and he realises he is not in the right place. This is aggravated but he fact that they way he copes with the noise on the bus is to sit with earphones in and to play games on his phone, so he is not really paying attention to his surroundings. 

We are teaching him he must look up at the bus and check its number before boarding, even if he thinks it is the right bus because it arrived at the right time. We are teaching him he must look out the window periodically and actively check for familiar landmarks. We are teaching him to look for familiar people in the bus- kids that catch the same bus as him regularly- so he can check he is in the right bus. 

Fortunately, when he has had trouble there have been kids in the community who have watched out for him and I have found out and been able to find him quickly and pick him up. 

After the first time we began working on this strategy- "If you realise you are in trouble or are where you shouldn't be call mum immediately". 

The second time it happened he did and stayed calm enough to describe where he was so we could find him and have him home within 10 minutes. 

For kids who have longer distances to travel and whose trip requires changes of transport or vehicle I recommend doing practice runs with them as many times as necessary for them to be confident to do it alone. 

Give your child the words and strategies they will need when they feel overwhelmed

The appropriate words and strategies kids need changes as they get older. It sounds silly in a way, but when your child learns their social interactions by rote, you need to be able to anticipate the more grown up words and strategies they'll need in advance and start teaching them.  

In Primary school things like "I'll tell the teacher" are OK, but by High School will likely just cause more of a problem. 

This is where the help of a great psychologist has been invaluable to me! We are currently working on responses to teasing and bullying and strategies for general safety and staying out of trouble. Things like "If my friends are doing something I know is wrong (like going out of bounds) I can choose to walk away to a different part of the playground or go to the Library instead" are fairly obvious and not difficult to learn. Ways to deal with bullies can be less intuitive and harder to understand and master, but we are working on it, and he is more confident all the time.

. . . . . . . . . .

So, those are the thing I can think of that we do with our kids to help them with their back to school stress.  Each year there are unforeseen hiccups, and we just try to roll with it and create new strategies as needed. I hope these lists have been helpful in some way.  As always if any Autistic folks reading this have suggestions of things to add, please let me know! 

Good Luck Everyone! I hope you and your kids have a great year at school! 

I've changed my mind

I've been writing this blog for 2 years now. 
Happy Blogaversary to me!!  

One of the things I wanted to do when I started blogging was to keep a record of my journey as a parent to Autsitic children. I think it's fair to say that goal has been achieved. I was reading over some old posts the other day, and it became very clear to me that I am in a different place now than I was when I started blogging. And I have changed my mind about some things.

1. I changed my mind about the name of the blog, and renamed it about a year ago. 

2. I changed my mind about what I call my kids. 

I no longer say my kids have ASD or have been diagnosed with Autistic Spectrum Disorder. 

These days I say my kids are Autistic.

This is because I believe Autism is a neurological difference that exists completely within the wide range of what is normal for human beings. I do not believe Autism is a "disorder" or something "wrong" with a person. 

3. I changed my mind about how I feel about my kids being Autistic. 

I no longer see Autism as a loss. I am no longer sad that my children are Autistic. I no longer wish they could integrate seamlessly in to society. 

I value their differences. 
I love that they are exactly who they are. 
I would not change anything about them. 

I no longer buy into the mainstream message that if your kids are not "normal" their lives and yours are "difficult", "tragic" and "heartbreaking".  

In fact, I try to let people know how happy we are! 

Life is truly a great adventure- not without tough moments- but a wonderful amazing adventure none the less, and there is beauty in every day. 

Life is a great adventure!

4. I used to think it was important for my kids to learn to blend in with society. 

This confession makes me cringe a little. 

Now I spend my energy attempting to empower them to be themselves and trying to help people understand why it is so important we accept everyone as they are, including making accommodations for minority groups. 

5.  I changed my mind about how I feel towards parents of "normal" children. 

I once wrote a post in which I said I feel jealous of them. This confession makes me cringe a LOT. 

This is no longer true. Back then I was busy feeling sorry for myself and focussing on what was hard about my life. 

Parenting is hard. Full stop. Parenting Autsitic children is no more or less hard. It's just parenting. 

You advocate for all your kids. 
You agonise over all your kids. 
You feel joy over all your kids too. 

These days I make an effort to think about all the things I have to be thankful for. Doing that has changed my mindset. For the better. And my children have benefitted from my new perspective. I know my life is no worse than any other parents life is, and my kids know it too. 


Why?

A lot of the reason I have changed my mind on these is things is because I just didn't know some stuff early on in my journey. I didn't realise the implications of some of my attitudes. 

We all in life are given opportunities to learn and I am grateful to have recognised a great opportunity when it was offered to me. Thanks to some awesome people I have met online since I began blogging, I have learned a lot. 

I have been fortunate enough to have some wonderful Autistic adults invest time in helping me understand what life is like for them, and that gives me an insight into my kids I cannot get anywhere else: not from other non-Autistic parents or from professionals who work with Autistic kids. I am so grateful to them for the time they have spent with me. 

Can I encourage you all to seek out input from Autistic people too? You won't be sorry! You might change your mind on some things too, and change is a good thing when it means we are growing and learning and become better able to support our kids. 

Tips for getting through the holiday season

Holiday season can be really demanding. Lots of events to attend that are noisy, bright and crowded. In Australia, the Christmas season is at the end of our school year, which is also a stressful time as school classes are out of routine, everyone is tired, and the weather is heating up. In the past for us this has meant an increase in stress and overload related meltdowns (and not just for the Autistic family members!) as we all struggle to keep up. 

Over the years we have learned some strategies in our family, purely by trial and error (my error, usually!) in most cases, that help us all during the holiday season. So this post is all about telling you the strategies we use to manage the challenges of holiday season events, in the hopes that some of the things we find work will be helpful for you too.

Strategy 1:  Say no to stuff

There is a lot on at this time of year. You do not have to do it all. If an event is something you know you or your child will not enjoy, it can't be adapted to help accommodate yours or your child's needs or if it presents safety concerns- say no and don't go. 

Strategy 2: Make your needs clear to those you will be spending time with

There is no need to apologise for this to your host or tread softly when telling them what you and your children need to be present and enjoy your time there. Everyone has a right to have their needs met, even if a little more effort is required for some than others. For us, one thing that really helps is to have all the essential activities of the visit over with early on in the event, so that if we need to go we can and we won't have missed out on things. In practical terms for our family this meant that when we went to my parents place for a Christmas celebration we asked to have the main meal served immediately when we arrived and the presents to be opened straight after that.  Those two things done early in the visit meant that we were free to go whenever we needed to. 

Strategy 3: Ask your host for a schedule of what will be happening so you can let your kids know what to expect

A lot of the anxiety my kids feel about going to events is not knowing to expect. If I can tell them what to expect and they know the venue a large part of their stress is removed. It also serves to help me know when I need to be most available to support them because I have advance warning of when things are likely to be loud or busy or otherwise challenging. 

Strategy 4: Set up a designated quiet place at the venue and show your child where it is so they can escape if they need to

This needn't be a big deal. A quiet corner in a bedroom is enough, as long as your child will be comfortable there and as long as others know that if your child is there it means they need some time alone and should not be disturbed. Make sure you show your child where it is and tell them they can go there if they need to be alone. Doing this has helped my daughter attend 3 recent events meltdown free, event though they were things she would usually find overwhelming. At one of those there was no room available for a quiet spot, but we took a very small pop up play tent and set it up for her in a quiet-ish corner of her choosing and it was enough- she could go in there and no one could see her and she couldn't see them. She used it a few times through out the evening and avoided becoming overwhelmed by deciding for herself when and for how long she spent time in there. 

Strategy 5: Bring your child's favourite soothing item and favourite food and let them have access to it

For us, this is often the iPad. Sometimes it is a fidget toy. Very occasionally it is a soft toy or a plastic dinosaur or horse. Whatever works. If your child has an item with them they find soothing and distracting it can help them recanter when they feel stressed. It can also be a good idea to bring some of your childs favourite foods. Trying new food can be stressful, so having something familiar to eat can reduce stress. When my daughter was younger I took her favourite crackers, dip and cheese everywhere with us so she would always have something to eat. We also found that chewing really crunchy foods and sipping through a straw helped relieve anxiety for her. 

Strategy 6:Leave "early" if you need to

My kids have some definite "tells" that they have had enough. I bet your kids do too. My experience is that if someone has had enough, they become less tolerant, more likely to become rude and difficult to be around. I know I do, and if you are honest, I think you'd say you do too. For an Autistic person "enough" can happen sooner than for a non-Autistic person, simply because of the work they are doing to process the sensory input and social interactions. And that is OK. If you've had enough in a social situation you remove yourself from it, right? So, do that for your kids too. If you can see they've had enough, leave. Take them home, let them relax. If it is impossible to leave immediately, make a plan to leave, tell your child what the plan is and stick to it. Let them stay in their designated quiet place until you can leave if that helps them. 
Edit: Alyssa left a comment (you can read it below) and made a really good point..... make sure the kids know they can tell you they need to leave. Scroll down to read her full comment. 


What do you think? Will any of these be helpful for you and your family? I'd love to hear from you if you try these strategies for the first time.... let me know how you go. You can also get in touch to tell me about strategies you already use that help your kids- someone else is bound to find them helpful too. 

Happy holidays!