The day I told her she is Autistic

This post has been moved to michellesuttonwrites.com

http://michellesuttonwrites.com/2015/11/20/the-day-i-told-her-she-is-autistic/

The transition to school plan- part 4- The safe hiding space

If you have been following this blog for a while you will know that my 5 year old Autistic daughter, "MissG", is off to school in a few weeks to attend Kindergarten in a mainstream class setting. We have been doing lots of preparation over the past 6 months (you can find posts on this topic by searching "transition to school" using the search function at the top right of the blog).

You will also be aware that due to the NSW Governments cuts to disability support funding, and despite extensive efforts on my part and the part of The School Principal, she will not be entitled to any individual support funding. This is disappointing to me, as it was individual funding that made such a difference to my older sons success in Primary School, and because in MissG's case there is danger of her running away and hiding when she is experiencing stress or Sensory Overload. When I say "danger of", I mean she WILL run away and hide when she is experiencing stress or Sensory Overload ( for a bit more on Sensory Overload click here). Even after being made aware of this, the Department of Education still does not feel she has "high enough support needs" to warrant an allocation of individual funding.

So it is left to the school and I to manage with no help. The School Principal, being the wonderful and supportive man he is, has assured me he will find money from his general budget to ensure MissG gets the support he needs. He is considering MissG's teacher allocation very carefully, as well as what classmates she will be best placed with. I cannot tell you what a relief it is to have such a professional, dedicated and compassionate man leading the team at my kids school! Were it not for people like him and his staff, mainstream schooling would not be an option for my girl, especially when the funding providers and policy makers at government level has such a disregard for kids with extra support needs.

MissG's Psychologist and I have been working for some months now on helping MissG develop the skills she will need next year, both social skills and general coping strategies. Autism itself is tricky enough to manage in a mainstream classroom, but with the additional diagnosis of Sensory Processing Disorder in the mix, there are some extra challenges to prepare her for.

As I mentioned, MissG will run and hide if she is stressed or experiencing Sensory Overload. The main strategy we have been working on is to help MissG learn to manage her need for sensory deprivation, or time out, in a safe way. Specifically, teaching her that it is OK to go and hide if she needs to, but she must hide in a designated "Safe Hiding Space" and only after informing a trusted adult that she intends to do so. This is not as easy as saying it once and her being able to do it from then on, unfortunately. Due to the nature of Sensory Overload, she will not always remember to communicate her intentions when she is in the moment of desperately needing some quiet to be able to re-establish her equilibrium.

 So- this is what we are doing.

These are MissG's "Hiding Tokens". She likes dogs very much, and at her preschool there was a Golden Retriever who was a regular visitor that MissG had a special bond with. She finds the thought of this dog very calming. So we have used Golden Retrievers as the Image associated with her "Safe Hiding Space". MissG will wear a token on her clothes, clipped on with a clip she can easily manage to open and close herself. When she needs to get away and hide she is to unclip the token from her clothes and give it to a trusted adult (at home this is her Dad or I, at school it will be the nearest teacher). Once the adult acknowledge the receipt of the token, she is free to go to the designated "Safe Hiding Space". If it is not appropriate for her to do this at the time, the adult will need to have an alternative for her to use that is manageable- a distraction of some sort (lets go together and get a drink to help you feel better then you can tell me what is wrong), but it must keep in mind that she will be unlikely to be able to express what is wrong until she has had a few minutes (at least) to calm down.





The designated "Safe Hiding Space" will display the same dog picture that is on the tokens. Here you can see the one we have set up at home on her bed.








Also in the "Safe Hiding Space" is a toy dog that was bought for MissG by her preschool teacher. It is the same as her favourite toy dog at preschool, and is very special to MissG (I am planing to buy a few more of these next time I am at Ikea!!). You can see here the toy dog sitting on her bed, where it lives and waits to keep MissG company when she needs it.










This picture shows what the "Safe Hiding Space" at home looks like when MissG is using it. It is just a curtain hung from the rail of the top bunk that when she wants to hide MissG can easily pull across to create a hiding space that she can sit in without anyone seeing her. When she has the curtain pulled across we all know she doesn't want to be disturbed or to have to speak. When she feels better she can come out, push the curtain back and come back to the adult she left the token with to get it back. This gives the adult an opportunity to ask her if she needs help with anything.

The school will need to find an appropriate place to use as a "Safe Hiding Place" that works for both them and MissG, and they have already expressed their willingness to do so. So we will practice this at home over the next few weeks, and the school will use the same method (have I mentioned how great the staff at our school are?!)

Now, I need to point out that this is not a strategy that MissG needs to use every day. In fact, at the moment, she doesn't even need it every week. However, as hiding is a behaviour we have seen many times in the past, particularly during times of high stress, it would be foolish of us not to plan for it when we know she will be entering a period of high stress when she goes to school for the first time, probably in the same week as she is going to become a big sister for the first time! If we can help MissG learn to use this strategy well, it could very easily avoid an incident of the school staff "losing" her from the classroom or playground. It also helps MissG to learn about the importance of communicating her needs and about ways to keep herself safe.

I still feel nervous about the run and hide issue, but we are doing all we can to help MissG with it. The school is aware and strategies are in place. Now we just have to hope for the best.

Autism Devotion : Helping

Graphic created by Life with Aspergers

This month I'm joining with some Blogging Friends to contribute to creating a series of posts under the topic of "Autism Devotion....."

I'm going to start with "Autism Devotion to Helping"

At our place we have routines established around helping in the house that involve everyone participating in chores and keeping their own things organised so that we all have a roll in helping the house run smoothly and stay (sort of) tidy. From the adults to the youngest, everyone has a roll to play.

That is not the kind of helping I'm going to tell you about.

I'm going to tell you about how my Autistic kids show compassion by helping spontaneously when they see someone in need.

One of my favourite recent memories was on a very rainy day when MissG and I were going to pick the kids up from school. The ground was very wet in the playground and as we crossed over the paved quadrangle MissG noticed a worm on the ground. She stooped down to pick it up, and explained to me that it was very important to put it back int the garden bed because once the bell rang there would be a lot of children walking there and they might not see the worm and end up stepping on it. She returned the worm to its "home" and we walked a few more steps. And she saw another one. Then another. And another. There were probably 10 worms in close proximity to where we were standing. "Mum- help me! I won't be able to save them all!" There was a bit of panic in her voice. We started picking them up. A friend and her daughter arrived and MissG organised the other little girl to help us too. We saved all the worms we could see just as the bell rang, but MissG still had to look around to see if there were anymore in need of help.

Another time I've recently seen this spontaneous helping in action is when the kids are playing together on the Wii console. Obviously the older kids are more skilled at playing the games than the younger ones are. I have noticed that when the younger girls are struggling, and sometimes upset and frustrated with their level of success, that my 13 year old Autistic son will often respond by saying things like, "don't worry- you are doing well" or "this is a tricky level, I even find it hard, you probably just need more practice". He does his best to encourage them and help them feel better. If he feels like his efforts are not working he will often come to me and tell me that they are upset and need help.

It is a wonderful thing to see your children show compassion for others and a desire to help when they can! In some ways even more so when you see it in your kids who have so much extra to deal with themselves!

Please, 2013, be kind

2012 is rapidly coming to an end.

2013 is looming and the first couple of months of it promise some big changes in our household!

Our oldest daughter, E, will be starting her HSC years (year 11 and 12).

Our oldest son, L, will go into year 8 and is being moved into the Gifted and Talented class at his school. Some of you know about the problems he has had with bullying over the past year, and we are all hoping that this move will provide him a more appropriate learning environment as well as a more supportive social environment (if you missed it and want to know you can search for "bullying" using the search function at the top right of the page, most of the information is in this post- Brave, Smart and Strong.....).

Our second son, I, will start High School in the year 7 Gifted and Talented class at the same high school as his older brother and sister.

7 year old MissK will go into year 2 at our fantastic local primary school with a new teacher.

MissG will start Kindergarten at the same school as K. Some of you have been following her progress through the preparation activities we've been doing with her (if you haven't and want to catch up just search the blog for "Transition to school" using the search function at the top right of the page).

And, Baby Number 6 is due to arrive in the first week of February, just after everyone is back at school.

Sometime during the first half of next year I will be aiming to returning to work in a part time capacity so that Hubby can reduce his work hours a bit in order to help him manage some health issues.

To be completely honest, I am pretty nervous about all these changes.

We've done everything we can to prepare for all the school transitions. There is seriously nothing left we can do to help the kids be ready for those. I have actually been so busy with all that preparation that I have not spent very much mental time on the fact that I am pregnant and we will have a new member in our family in about 6 weeks. Now that we have arrived at the first few days of the month I have purposely set aside to be quiet and stop this routine of attending an average of 2 appointments day making sure everyones medical and mental health needs are taken care of, it has suddenly hit me how tired I am, and how little time is left before all this big stuff I've been getting ready for happens.

But I'm mostly wondering if I've done enough to get ready for this baby? I have the physical stuff covered- bassinet, blankets, nappies, clothes, pram, etc.... it's more the emotional stuff. Not that you can really completely prepare for that. But I'm thinking about the social stories and conversations and practice visits that we do to prepare for other big changes, and I've done none of to get ready for a baby in the house!! It is probably because I've been so busy with everything else, I guess. At least I've realised with enough time to do something!

I'm thinking I'll put the car seat in the car and have the stroller in the house where the kids can see it. At least if some of the baby paraphernalia is visible that should help with awareness of an upcoming change, right? And I might be able to find some books on the shelf about new babies (I think we have some!) that we can use to talk about what babies are like with MissG. I don't think it will be as hard for the older kids to anticipate- they've at least done it a few times before. I do wonder how the change will impact the two younger ones, especially MissG as she makes her big transition to school at the same time as becoming a big sister. How are ASD and SPD going to impact her experience? It is a complete unknown.

So- it is a big year coming up, no doubt about that. I'm not really one for New Year Resolutions, or for making wishes. But, if I knew I could have wishes granted, I would wish for a bullying-free year, for a year with no new diagnoses, and for a year in which no more cuts are made to the support my kids need to attend school. It's not too much to ask, surely?

Please, 2013, be kind.

Introducing.... "Different kinds of normal"

As this blog has developed over the past 6 months it has taken a direction I was not anticipating, in that I've been posting a lot more "political" stuff than I expected.

Then over the last 2 months our family dynamic has shifted again with the addition of a new diagnosis for one of the kids.

I have found myself wanting to write less specifically about Autism from time to time.

I have also started contributing regularly to another website called Aussie Mum Network.

Thinking about managing all the different directions has brought me to the conclusion that I need another place to write so that this blog doesn't get full of other non-Autism things that you who are interested in my journey with Autism would have to wade through.

So, I have started another blog. It is called "Different kinds of normal" and it is where you will find my less Autism specific writing as well as links to the other places you can find me (like "Aussie Mum Network" and another blog I've started called "Being OK with Bipolar").

To those of you who just want the Autism themed post- please, hang around- I'm still here and still writing!

To those of you who think you might be interested in some of the other stuff I'm writing about, I invite you to check out the "Different kinds of normal" blog or Facebook page.

To those of you who have noticed the odd post or reference to Bipolar Disorder and would like to read more on that you are welcome to have a look at the "Being OK with Bipolar" blog or Facebook page.

If you are an Aussie Mum and are interested in some only slightly Autism themed parenting style posts you can find me here on Aussie Mum Network (which is a good website to browse around for all sorts of reasons).

Thanks for your support so far in following this blog. I've been a bit surprised how interested people have been in my journey. I hope you'll continue to find helpful things here and in the other places I'm writing. 

Brave smart and strong..... my amazing son. And a rant about funding cuts.

I believe it was Christopher Robin who said you are braver than you believe, stronger than you seem and smarter than you think. Well, technically, it would have been A.A. Milne who said it, I guess.

One thing that strikes me about my Autistic kids is how resilient they are. And how clever. I'll explain.

I go through the day and I process sounds, sights, smells and sensations. I interact with people appropriately. I plan and carry out tasks. I get from one place to another. I smile and laugh or look serious at the right moments (mostly). At the end of the day I am tired from doing all this.

My Autistic kids do the same things. The difference is that they do it all having learned by rote all the social cues and correct responses. They do it all from in the middle of dealing with a sensory system that interprets everything much more intensely- lights are brighter, sounds are louder, touch is painful. That has to be exhausting!

Every time they master skills they get busy using them well in their everyday lives, and then at some stage the rules change. They grow a bit older, and require a new set of more complex skills that they must rote learn and implement. Some stages have a few new skills to acquire, some have lots!

This past year has been a stage with heaps of new skills for my 13 year old Autistic boy to learn, as he started in Year 7 at High School this year, in a mainstream class. We did as much preparation as we could before hand, and off he went. Sadly, it is true that kids on the Autistic Spectrum are much more likely to be bullied than their peers (46% compared to 11%). This has proved to be the biggest issue my son has faced this year. We had him prepared to navigate hallways, deal with 7 teachers, able to cope with a daily timetable that changed over a fortnightly rotation, ready to plan out and manage assessment tasks. We have started teaching him more complex, adult style social cues and responses. What we couldn't get him ready for was having his lunch box stolen, being shoved in the hallways, being called rude names, having money demanded of him by other students, having his school bag urinated on and having his mobile phone stolen. We supported him through all of these things, with the help of our Psychologist and with the co-operation of the school.

Half way through the year the NSW Government took away his individually allocated support funding (click here to read my Open Letter to NSW Politicians expressing my concerns about the Every Student Every School Policy), and he lost time with the Teachers Aide who had been working with him. Things had been hard, but manageable before that. After the funding cut, things got very hard. Both my Hubby and I, and our sons teachers could see he was not coping as well socially.

Amazingly though, even with all the stress he was experiencing, my Brave, Strong, Smart son managed to achieve so well academically that the school has suggested he would be suitable for placement in a class for Gifted and Talented students next year. The suggestion was made as a way to support him better academically as well as socially, as the group of students he will be placed with are highly motivated to learn and much more of a predictable and mature social group.

Not only am I encouraged by the schools willingness to do this for my son, I am sure that it is the more suitable, more supportive environment my son needs to gain back his enjoyment of school and his interest in learning. And I am immensely proud of him! He never fails to rise to the challenges set before him, despite the extra difficulties he has to work through. Seeing him do that is one of my favourite parts of the journey of parenting Autistic children.

The rant part of this post is that the NSW Government should count themselves lucky that they are in the fortunate position of having staff working in their schools who are so committed to seeing kids with additional needs well support regardless of how much resources are stripped away from them. In our family we have already seen the trickle down effect the funding cuts are having. We feel very relieved that the schools our children attend are willing to work with us to make sure our kids get what they need despite having significantly reduced funding to work with. It angers me that the people who made the decision to take away the money that provides that support will never know what the real cost of their decision is and will continue to be.

But lets finish on a positive note. My son is amazing! He has worked hard. He has dealt with things he never thought he could. He has grown. He has persisted. He has achieved well. We are now winding down for the year, having a few days off here and there, even though school is officially still on. Soon we will have a nice long break from school. Next year is a new start in a more supportive environment. I am sure we are going to see more great things form him next year. If he could do so well this year, with all the extra awful things he's had to deal with, imagine how much more he will achieve with many of those stressors removed.

I am one very proud mum!

The transition to school plan- part 3- Kindergarten Orientation

Time to update you all on MissG's progress getting ready for "Big School". As the end of the year draws closer, and I realise there are only 4 more weeks of her attending Pre-school, I am a bit surprised to find that I am not really nervous about this transition anymore. That makes me happy!

We have done pretty much everything we can to prepare her, and the school, for her starting there next year. We have a few appointment left to go with our fantastic psychologist, who is helping us with developing social stories and working on some social skills prompts. Apart from that there is very little left to do.

So, let me tell you about the Kindergarten Orientation program that we have just been involved in.

First, I'm going to quickly say how much I LOVE my kids Primary School. It is "just" our local public school, and it has historically had a "bad reputation" due to being in a "rough neighbourhood". All the local talk about it is highly exaggerated, and mostly untrue. The school has the most dedicated and talented staff I have ever come across, and we feel so lucky to be able to send our kids there. It is a small school, and the effort they put into all areas of the children's development and welfare is exceptional. The care and commitment The Principal and other Staff have shown to supporting MissG in her transition has made things so much easier for her and for me, and I honestly would not send her anywhere else next year.

The Kindergarten Transition Program the school ran this year was 7 weeks long, and ran on Wednesday mornings for 2 hrs. Some mornings MissG didn't want to go- but that wasn't for any other reason than that Wednesday is a Preschool day and turning up 2 hours "late" was a break from routine that she found a bit of a challenge. Each week we met at the schools Community Room, where many of the kids were used to going for playgroup, and the kids played while parents chatted and got to know each other for half an hour. After that the teachers took the children off for some activities in various places they need to know- classroom, library, playground, music room....  while the parents went and learned about different school programs, resources and services available. It was fantastic to see the kids gain confidence moving around the school and interacting with the staff and with each other. By the end of the Program, they would go off for their activities with no fuss, perfectly comfortable with the staff. Great to see!

The thing that strikes me most about the success of the Program is that it was beneficial for the "normal" kids and the kids with higher support needs alike. None of the children were singled out but all were catered for in exactly the way they needed. And so were the parents!

For privacy reasons (ours and the schools!) I'm not going to name the school, but let me tell you- they are amazing!

When you go looking for somewhere to place your kids who have special needs you are looking for somewhere like this, that offers Programs that are inclusive of all children, are well thought out, well executed and for staff who are open minded, caring, relaxed and committed. It can, unfortunately, be  hard to find (we tried 4 other schools before we found this one), and with the NSW Governments commitment to cutting funding to our schools I fear will become even harder to find. Harder, but not impossible. So- my thanks go out to our great school. MissG really benefitted from the Kindergarten Transition Program. It has made a big difference to our family.

Separately form the Transition Program, I have been keeping dialogue going with The Principal about things that have been on my mind. A couple of the issues we have discussed recently are helping teachers learn strategies to assist MissG cope with changes in routine and unexpected interruptions, how to support her if she is hurt or if another child does something she finds difficult to cope with (an accidental bump that could induce sensory overload, for example) and some ways the school can help MissG manage playground time. I have been grateful to have the help of the Preschool Director with this task. She was generous enough to sit with hubby and I for an hour last week and work on compiling a list of strategies The Preschool has used successfully that she will compile and present to the school. Support like this is invaluable to me, and speaks again of the exceptional community support we have around us.

If you are reading this and thinking that it's all fine for me, as I obviously have a lot of great help around me, I would like to say that while it is great to have the support, much of what I am talking about can be initiated by parents, or even done by parents if need be. If you need ideas to help you get started or tips on how to approach the schools to encourage them to establish some similar programs, drop me a line and I'd be happy to point you in the direction of some great online resources that can help you get started. One worth mentioning up front is Sue Larkeys website, where you can go to sign up for regular email tis on managing schooling for ASD kids. Sue also has a facebook page.

The next step for me is to get social stories organised with our psychologist, so we can use them over the Christmas break.  I'll let you know how we go with that in the next transition to school update.