Thursday, December 27, 2012

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.

Tuesday, December 11, 2012

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. 

Wednesday, November 28, 2012

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!

Saturday, November 24, 2012

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.

Monday, November 19, 2012

Half way through Term 4- funding cuts update

Half way through term four. Five weeks to go until a nice long break. Of course, they are the busy last weeks before Christmas where all the end of school year concerts and presentation ceremonies happen. And by the time all the members of our family are covered I’ve got what feels like a million other appointments to go to as well.....  Kindergarten Orientation,  High School Orientation, Ante-natal clinics, Doctor, Psychologist, Psychiatrist, Physiotherapy.....  It’s no wonder I’m feeling a bit overwhelmed. 

I can see that MasterL is feeling overwhelmed too. I know this from observing his behaviour. I also know this because he has told me numerous times in the past week that he doesn’t want to go to school anymore. When I ask him why not he can’t tell me. When I ask him if something bad is happening at school he says not really. He just doesn’t want to be there anymore. He has stopped even trying to manage being in the playground at lunch time, preferring to take himself to the Support Unit to sit quietly with other kids who struggle in the same way he does. I’m not that worried about him choosing this coping strategy- it shows a good deal of maturity in many ways, in that he can see for himself that he needs a break and knows how to get it appropriately. I’m proud of him for that. I am disappointed, however, that he feels he needs to do that. 

To me it says that the cut in funding has led to a reduced level of support which only provides for L’s academic support and no longer for his social support needs. I have spoken to the school about this, and they have told me they can organise an assessment to see if they can attract any more funding to help him individually, but it really is a long shot. 

The new system doesn’t allow for kids who aren’t showing difficult behaviours to get individual funding (and he isn’t showing difficult behaviours at school....yet) and the money they have in the general pool is already being stretched too far. It’s frustrating to be able to see the trickle down effect of the funding cuts starting, but still not being able to do anything about it until it gets worse. He already is struggling with going to school, and I can see his behaviour at home showing this. He expresses reluctance to go, and is having trouble completing homework tasks, yet because he looks ”OK” at school there is unlikely to be any support available. 

It brings up the question again for me....  why is what my son needs less important than what other children need?

Wednesday, November 7, 2012

Some days are better than others....

Photography by Karen Stevenson
Any other U2 fans out there?  The song "Some days are better than others" has been going through my mind lately.

Things have lately. I've had a few teary days, coming to terms with some new things in our family. I've had a lot of busy days attending appointments, making phone calls, organising "stuff". We are OK, but new challenges are tiring and time consuming.

Anyway, I'm just stopping in briefly to let you know that soon I will get to writing some updates on School Transition, and Funding Issues for those of you who are interested. After that I'll try for a more general kind of post.

In the mean time you can read my most recent contribution on the Aussie Mum Network website by clicking here. If you want to check in for general updates you can have a look at my Facebook page.

Sunday, October 28, 2012

Just another thing to add to the rest

I mentioned on the This is not what I signed up for Facebook page a week or so ago that we were having a difficult week. It's turned into a difficult month.

On top of the usual ASD related things we manage daily, Hubby's Bipolar symptoms have been increasing and causing him issues that have led to him needing to reduce his working hours.

As if that isn't enough we have also seen the addition of 3 other medical issues in the family over the last few weeks. I do my best not to complain, but I sure have struggled the last couple of weeks in particular to maintain a positive frame of mind.

Any one of the things we manage on its own wouldn't be that hard to deal with. Even a couple of them wouldn't be too bad.

But, honestly, I keep thinking to myself, how much more do we have to deal with here?!

I mean, every time something new comes up, it's just another thing to add to the rest. And usually involves another onslaught of paper work to be filled in. Not to mention the added emotional stress and anxiety load. Then I find it difficult to sleep, and so the tiredness cycle starts up..... and my negative thoughts sometimes get the better of me.

I struggle not to dwell on the thoughts of envy that others have so little to cope with, yet still manage to complain so much. It takes a lot of self discipline to keep my thoughts on the track of remembering that the hard times come and go, things always work out OK, and there is always something to be thankful for.

Sometimes I have to give in to a bit of a cry, and just let it all out for a while so that I can clear my mind and get on with things. But, at the end of the day- or maybe more appropriately, at the beginning of each morning- get on with things I must. So I do, most days with a smile on my face, even though I might be wondering what the next thing to add to the rest will be.

Friday, October 19, 2012

Sensory Processing Disorder...

I have mentioned Sensory Processing Disorder a few times in recent posts. Some of you may not be familiar with what this is, so I thought I would write a little bit about it. I will include some links to information, and then give you some insights into what SPD looks like for us.

Let's start with good old Wikipedia's definition (you can find the full Wikipedia article on SPD here)

Sensory processing disorder or SPD is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within the own body (visualauditorytactileolfactiongustatoryvestibular, and proprioception).
For those identified as having SPD, sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organizing, problems with doing the activities of everyday life (self care, work and leisure activities), and for some with extreme sensitivity, sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion.

SPD Australia says,  
SENSORY PROCESSING DISORDER (SPD) is a complex neurological condition that impairs the functional skills of 1 in 20 children. People with Sensory Processing Disorder (SPD) misinterpret everyday sensory information, such as touch, sound and movement. They may feel overwhelmed by sensory information, may seek out sensory experiences or may avoid certain experiences.
People with SPD experience their world as either Hypersensitive (over reactive, sensory avoidance) or Hyposensitive (under reactive, sensory seeker). They may also present with motor skill problems. They may react with strong emotional behaviours and experience what may be described as ‘melt downs’.
While it is estimated that 1 in 100 children in Australia is diagnosed with Autism, and we see above that 1 in 20 have SPD, it is interesting to note that the American Psychological Associations proposed diagnostic criteria for Autism Spectrum Disorder (see here) in their soon to be finalised DSM-V will include,

"Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; ......."

which seems to acknowledge that SPD is often something that goes with Autism. Nevertheless, it is obvious that SPD occurs in many more children than Autism does. 

In our household, one of the Autistic kids has SPD (MissG) and the other doesn't (MasterL- he has some sensitivities to sound and touch, but nowhere near the difficulties that G has). Because the SPD diagnosis for MissG goes with an Autism diagnosis, my experience with SPD is intertwined with Autism, as MissG's responses to sensory input and overload are influenced by her Autistic tendencies. I mention this because it serves to remind us that although people share a diagnosis, the symptoms they display and their coping mechanisms can make them look very different from each other in some ways while appearing similar in others. 

So- what does SPD look like for us? (If you want to read over previous posts I have written on or around the topic of SPD you can go here and here.) MissG is mostly Hypersensitive- she over reacts to sensory stimulus and tries to avoid it. The only places on her body that she can be Hyposensitive are her mouth and her feet. This made things interesting when she was younger as everything went in her mouth, and she could be found licking all sorts of things that made me cringe! When she was old enough to be walking on her own in public places (instead of being carried in the back pack or riding in the stroller) the sensory seeking with her feet became problematic as she wanted to step on every single change of pattern, colour or texture she came across.

Hypersensitivity has been a big issue for our family. We have all learned along the way what things might set MissG off, and all to various extents do things to avoid triggering her.

When she was younger, and before we had such an understanding of SPD and what sort of things she struggled with, we went through a period of time when major meltdowns were a normal part of our day. It was common to have MissG experience sensory overload 5 or more times a day. To the "untrained eye" these meltdowns would have looked like tantrums. They could be triggered by things that seemed very small, and so looked liked over-reactions. Each meltdown would last between 5 mins and an hour, and could include crying, screaming, hitting, kicking, thrashing, throwing herself on the ground, throwing objects. Usually she would lose the ability to express herself verbally. If the meltdown was caused by an injury (as small as being bumped or as big as a cut that required medical attention) she would put her hand over the injured area and either huddle herself up silently or scream as if she had a broken bone. No one would be allowed to look at or touch the injury.

These days things are a bit better. Strategies we have used to get to this point are:

*organising a "sensory diet" that provides desirable input, including time for swinging, time for bouncing, plenty of things to touch (soft toys, squishy toys) and things to put hands in (sand, uncooked rice and dried beans), foods to crunch on, things to sip through a straw (including thick things like custard), time for water play (you could use any kind of sensory experience your child likes - some kids like playing in shaving foam or paint or goo.....  MissG loves water play). We also have some more "official" sensory tools recommended by the OT that MissG likes, including a body sock, some yoga/exercise balls, and fidget toys.

*allowing self initiated zone out time- for MissG this is often iPad or tv time, sometimes it is listening to her favourite music, and some times it is time alone in her room when she will choose to sit in the enclosed space of her bottom bunk bed and play quietly with a favourite toy.

*offering the choice to wear her ear defenders as a way of regulating the sensory input she is exposed to

*enforcing some sensory deprivation time- sometimes we insist MissG take some quiet time using her ear defenders, or alone in her room inside her tent or in our room under our doona.

It is a bit of a trial and error thing discovering what works best for each child. What works for MissG may not be what works for your child. Input from a good Occupational Therapist can be invaluable. 

The key thing I wish someone had been able to tell me a couple of years ago when we were in the midst of numerous meltdowns a day is this- it will get better! You need to do some detective work to figure out what things will help support your child's sensory needs, but once you have done that, things will be better!

If any of you reading this think of things I've left out, or have suggestions for others coping with SPD, feel free to leave a comment!

Tuesday, October 9, 2012

Misunderstandings and misconceptions

I have a google alert set up that forwards me an email each day containing links to news articles related to Autism. Todays email contained 47 articles. 22 of them were about Autistic children being prone to wander off/ run away/ bolt/ whatever you want to call the terrifying experience of having your child vanish.

The first article I read (here from Sky News Australia) said,
"Almost half of US children diagnosed with autism spectrum disorder (ASD) wander away from safe places, and about half go missing long enough to alarm their parents, a new study has found." (OK- firstly, ANY period of time is long enough to alarm me if my child suddenly vanishes, but we'll let that one go).

It went on to quote
"'Children who were reported as missing were older, more likely to have experienced skill loss and less likely to respond to their name. They were also more likely to have lower intellectual and communication scores than non-missing children,' Law wrote."

I have an issue with this sort of reporting. You might think it is pedantic of me, but I feel that reporting like this just reinforces the stereotype that Autism equals dumb. In so many cases, this is just not true. Being unable to communicate in socially conventional ways does not mean a person has lower intellectual capacity.

It's probably unfair of me to pick on Sky News, but there were too many articles on this to go through them all. I know that in this article the writer is just reporting (loosely) what research found, and I guess the fact is that in the 1200 families surveyed for this study that is what they found. But the problem I have is that reporting like this, where an initial study (in this case they say it is the first study of its kind in the US) finds something, then all the popular media do a quick review of it, the general public base their beliefs on this watered down second hand report. Scientific process dictates that this finding now either supports or refutes a theory and further research should go on to build more theories around the findings, and seek to replicate them or disprove them. Taking the popular media report on an initial research finding causes misinformation and misunderstanding to circulate around the general population, and we end up with an assumption that Autism is something it is not.

My daughter "wanders". Her IQ has been assessed to be in the high range of what is considered normal. Her recent speech pathology report states that her receptive and expressive language are both in the high range of what is considered normal. She is Autistic. She has Sensory Processing Disorder. When she becomes anxious or experiences sensory overload she disappears for a while. If you didn't know her and you found her in her hiding spot she would likely behave in a way that you would find challenging. She probably wouldn't speak to you. She likely wouldn't respond to her name. She may try to hit or kick you. This does not mean she is not as smart as you!

We need to be so careful with our assumptions and with the stereotypes we choose to accept and perpetuate. Realising that the label my children have been given can act to cause misunderstanding in others about who they are makes me more aware of the misconceptions I must hold about others. And that is truly a challenging thought.

Thursday, October 4, 2012

A letter to my past self

Dear Me 10 years ago,

I know you think you have this parenting thing sorted out pretty well, but I need to tell you some things, because a lot is about to change for you. You have three great children, and you have found them challenging at times, but you are soon going to experience a different side of parenting that you haven't known about before. It is going to challenge you in ways you can't imagine, and it is going to make you into a different person. You don't know it yet, but you are going to be the parent of children with a disability. Right now those words freak you out. But take a deep breath, and keep reading.

Firstly, listen carefully when I say- everything is going to be OK. You are going to be bewildered, exhausted, at a complete loss for the right way to go, lonely, frustrated and frightened. You will grieve, rage with anger and give up hope. You will meet Autism. You will find your feet again, pick yourself up and you will go on. And you will be OK. So will your children. The ones you know and the ones you are yet to meet. You will all be OK.

You will need to learn to look after yourself. You don't know it yet, but you have a tendency to take on a lot and do so much that you end up not coping with anything. The qualities in you that cause you to do this are in themselves not bad. You don't need to change them. You just need to learn to pace yourself, to say "no" sometimes, and to recognise that your needs are as important as other peoples needs. If you are going to have what you need to be there for your family, you need to look after yourself well too.

You will need to learn not to worry what others think of you. In the past you have gone to great lengths to keep others happy and to do what you think they expect of you. Firstly, you need to realise that you are sometimes wrong in your assumptions about what others expect. Spending a lot of time doing things based on assumptions is counterproductive and ultimately a waste of time! Secondly, it is just not healthy to run your life this way. At some point you will need to shift your focus from trying to keep everyone else happy to looking after your own needs and the needs of those in your household.

You will need to learn to trust your instincts and be prepared to stand up for your kids. As time goes on you are going to find that you will need to be a strong advocate for your children. There will be times when others do not understand what your kids need and you will have to stand up and tell them. Sometimes they will ignore you the first few times you try to tell them, and you will have to step out of your comfort zone and do and say things in ways you hadn't tried before. Sometimes people will think you are pushy, rude and an over-reatcor. As long as you are not disrespectful towards others, this is OK, and you can rest assured they will get over it. Trust your instincts- if your gut tells you your kids need you to stand up for them- do it.

Above all, don't have regrets. You are going to take time figuring all these things out. You will probably read this letter and disregard most of it, because, let's be matter what people tell us we can't really understand it until we experience it ourselves. If you take nothing else away from reading this letter please remember, you will make mistakes, but you needn't regret them. You will take on too much and burn yourself out. You will have to swallow your pride and ask for help. You will need to take antidepressants for a while. Don't waste time regretting it when you don't get things right the first time- it is all part of the process you need to go through so you can own who you will become. You will get there, and you will make some great decisions as well as some you will have to fix up later. You will have lots to be proud of. Please remember when you are feeling low that you are also doing your best. No one can expect more from you than that. Not even you.

And rest assured, that in 10 years time, even though you have made mistakes and taken a long time to learn things the hard way, I will be there looking back on you and smiling, grateful for who we have become.

from You 10 years later.

Saturday, September 29, 2012

More funding cuts.... who is prepared to fight with me?

When I started blogging 6 months ago, I had no idea the direction the blog would go in. I thought I would be posting a series of honest but witty stories about living with Autism that would encourage and inspire, and maybe increase understanding of what Autism is within the wider community. I don't really know if I've achieved that at all.

What I do know is that I am now writing more and more often about funding and policy and battles for equal opportunities for my kids. The other stuff is still there, but more and more I find myself in the role of advocate and discontent.

I really was not expecting that.

It makes me think about how lucky people are who don't have to think about whether their child will be adequately supported at school. I was one of those until recently. Funding was available to support all my kids to learn well. L needed extra support and he got it. Thanks to "Every Student, Every School" that is now gone. I assumed G would get funding too, but as it turns out Government Policy changed, and now I have to fight for it.

You might think that you are one of those who doesn't have to worry. I'm sorry to say that I am going to have to challenge that assumption. Our NSW Government has announced even more cuts to Education, and it is not just kids with disabilities they are targeting now. $1.7 billion is being taken, and your children will all be affected. As I predicted here, an outcry is starting.

While I feel cranky that it took cuts that will affect the majority before people are interested in making a fuss, when my kids weren't worth fussing over, I am pleased that finally the campaign to let the government know we are not happy is building.

Please keep an eye out for the NSW Teachers Federation organised protests that are coming up, and join in your closest demonstration.

I for one will not be happy to sit back and watch, then tell my grandchildren that education used to be better, but we didn't bother to fight when they took away the funding. Are you?

Who is prepared to fight with me?

Thursday, September 27, 2012

Every Student Every School- an update one term in

I've spent a fair bit of time writing about the Every Student Every School Policy on this blog. I've spent a fair bit of time writing about it to various Politicians too. I've attended a rally, been interviewed by media, collected signatures on petitions, and met with my local Member of Parliament. But the policy is still in place, and the world is still turning.

Event though it might seem to most that I'm going on about something that really isn't having much of an impact, it is early days yet. Aside from the fact that the NSW Government has since introduced even more funding cuts from more areas of education that will further compound the problems experienced by teachers, students and parents, the effects of Every Student Every School have begun to be felt in our household and many others, and will continue to impact us over time.

Here is a summary of the main effects I have noticed in the last 10 weeks.

Teachers Aides, or Learning Support Officers, in many schools have lost their jobs. This impacts (obviously) the Teachers Aides, the teachers who now have less "hands on deck", the Students who have less support available and their Parents who have their children arriving home form school more stressed.

In our house it took 2 weeks before L commented to me about the drop in support. His school promised to maintain as high a level of support as they could with the same teachers Aide,  but it took only 2 weeks for L to comment that he hadn't seen MsA very much lately. The comment may have sounded quite ambivalent to those who don't know him, but I know that he doesn't mention things unless they are weighing heavily on his mind. We have not yet noticed a drop in L's academic performance. It will be interesting to see if there is a difference in his end of year results compared to the results he achieve in Semester One with higher levels of support. We have noticed his enthusiasm for school dropping, which is sad because he is a bright boy who loves to learn new things. We received his NAPLAN scores last week and were encouraged to find him well above the National average in a couple of areas, one of which he had really struggled with a few years ago. We believe this is a testament to the results possible for a child with a disability when they are adequately supported. We fear that over time, with the lessened support made necessary by the new funding policy, L's academic results will suffer as he struggles to navigate the social environment alone and that takes away the energy he needs to do well with his school work.

One of the changes has been the way you now apply for individual funding. Previously, a diagnosis of Autistic Spectrum Disorder qualified you to apply and receive some individual funding. The amount of funding was determined by a formula applied to information provided by parents and teachers into a standard form processed by the Department of Education. The form hasn't changed very much, nor has the formula. It still takes ages to fill in, and is painfully bureaucratic. It still feels like it is designed to be so difficult that you just give up trying to satisfy all its check boxes and jargon filled explanations. The difference now is that the diagnosis no longer automatically makes you eligible to apply. Now you have to complete an expression of interest style form, which I lie to refer to as the "Application to be Eligible to Apply". This preliminary application is just as complicated and time consuming to manage as a parent or School Principal, but provides the Department of Education with a short one page set of number codes that they put into another little formula to decide if you should fill in the real application. I suppose this process saves someone in an office somewhere some time processing the longer set of paperwork, but what it does form my perspective is make our School Principal and me work twice as hard and use twice as much time. In a way I consider that we are lucky to have done both applications, because I've heard that many people filling in the preliminary application are told not to bother to apply.  We were given the go ahead to apply to be considered for individual funding for MissG, which we have now done. I think in total I personally have spent about 8 hours on this process, including the approximately 4 hours I sat with The Principal going through the application forms. I don't know for sure how much time The Principal has spent on it, but I know it was considerably more than the time he spent on it with me. So, at least half of one of his work days was spent on my daughters funding application. I know for certain she is not the only student enrolling next year that he will do this for, and I know for certain he has spent time on applications for students already attending the school. This is time spent on individual students that should be able to be spent on whole school issues. Yes, in some ways, sorting out funding for individuals *is* a whole school issue, but it shouldn't be!

These are the main things I've noticed, from with in my household. At this point, I'd be interested to hear from others that the Every Student Every School Policy is impacting, and to know how the Policy has affected you so far. All comments made on this blog have to be approved by me before they are posted publicly on the blog, so if you want to share confidentially just let me know in your comment that it is private and you do not want it published. If you would like me to reply privately, please leave me your email address. All observations and comments are valuable, so please leave me your thoughts however small they might seem to you. Thanks!

Wednesday, September 26, 2012

When the "what ifs" attack

I have this weird thing going on with my eye at the moment. It's like a mix of allergy and conjunctivitis symptoms. It's pretty uncomfortable, but hardly life threatening.

Yesterday I managed to have a little panic attack over it.

Yep- I was sitting in the car with Hubby driving us, and all of a sudden I was overwhelmed with the worry that I had an infection in my brain that was so bad it was starting to seep out my eye and that I would die within days and Hubby would be left alone with the kids and he wouldn't know everything he needed to know to look after them.

Now, none of my children has "severe" Autism. I don't have to worry about where they will live when I am gone, or who will look after them like some parents do. I thought that I was immune to these sort of panic attacks, to be honest. Apparently not.

For the record, I have quite a good system for keeping records of all the important things Hubby would need if he suddenly had to become the primary care giver and organiser the way I am at the moment. Aside from the fact that he pretty much knows what is going on and attends as many meetings and therapy sessions as his work schedule allows, there is also a paper record of everything. Each of the kids has a file, in the filing drawers, that contains all their relevant health information, school records and for our ASD kids information about all the therapists who know them, recent reports..... everything. Hubby knows where these are, and could easily access everything he'd need to know. The rest of my filing is in all sorts of disarray, but this section is kept in immaculate order (I call it prioritising).

So- what's the deal with this silly panic attack? I don't know! Maybe I'm not as "together" with the whole Autism thing as I like to think. Maybe it's just a normal parenting moment that everyone experiences from time to time. Maybe it's a symptom of an underlying brain infection.....

I decided to take it as a prompt to think through the things I have in place for my kids to get their needs met, and to take a moment to evaluate my record keeping. I think my records are OK, and I am very fortunate to have family and friends that I know would be here for my Hubby and kids in less than a heartbeat if the need should arise. There is even a plan for if something happened to Hubby and I together.

So I don't need to worry. And I won't. Because indulging in the endless cycle of "what ifs" is a time waster, an emotion waster, and an energy waster. And if  really get started, I'll never stop ( I have a great imagination)! There are so many things to worry about, if you set your mind to it, and that is not what life should be about!

Life should be about enjoying the little things, making time for laughs and contentment, celebrating what is good.

Focusing on the attacks of the "what ifs" robs us of that, no matter who we are and what our challenges are.

What are you going to do when the "what ifs" attack next?

Monday, September 17, 2012

The transition to school plan- part 2- The Funding Application

The Principal was surprised to be able to tell me that our application to be considered eligible to apply for individual funding had been approved.

To be honest- I was surprised too. The form we filled in was not really set up to be easy to fill in with Autism in mind. It was much more geared toward physical disability, intellectual impairment or severe behaviour problem. The fact that we had to include the information that MissG is a flight risk when she experiences sensory overload may have helped our cause, I think.

Whatever it was- they ticked the box that said we should go ahead and fill in the full application.

So we did that one morning last week. The Principal, The School Counsellor, Wonderful Hubby and I sat down for almost 2 hours and tried to put into bureaucrat-speak everything important about looking after MissG's sensory, social and safety needs with the view to fitting some learning in there at the same time.

The School Counsellor was a great help as he had completed some testing on MissG the week before and made some great observations about her reaction to stress, tiredness and being confronted with new situations and information (mainly that she tends to shut down and become unco-operative). We copied and pasted, and spat their own technical terms back at them. We were honest about how difficult she can be. That was hard.

Hubby and I were debriefing afterward, and we both felt sad that we had to say such harsh things about our gorgeous girl to get them to pay attention to us. But we had to acknowledge that caring for her and keeping her safe is a tricky job, and to those who are not familiar with her it could be quite overwhelming, especially while she is adjusting to a new school with all it's different routines, structures, people and other variables. So, honest we were, as painful as it felt, because we want the school to be well resourced.

In some ways it was a bit validating to have to explain to someone all the things we know and just automatically do. I know that sounds a bit strange, but in a way it is good to verbalise what our normal is and acknowledge that it is intense and busy and difficult. It is good to be able to realise that all things considered, we are doing an OK job, too!

Anyway, we filled in as much as we could. There were a couple of things I had to give copies of to the school (like MissG's letter of diagnosis from the Paediatrician) so they could keep the box tickers happy. And now we wait again. We wait to see if the powers that be who don't know our child at all want to assign a dollar amount to how difficult she will be to have in school. If they do- how much will it be? It is an uncomfortable wait. But wait we must.

Sunday, September 16, 2012

The grief ambush

I was reading a conversation thread in a group I'm in on Facebook, where people were sharing what they'd done on the weekend. Most of the comments were about how they'd been with family celebrating birthdays, or that they'd had a surprise visitor, or spontaneously gone on an outing. And they all said they'd had a great time, or enjoyed themselves.

And I realised something I hadn't thought about before.

I haven't truly enjoyed a family get together, a surprise visitor or a spontaneous outing for ..... ages. I mean, I've been in those situations and there have been moments of pleasure, or laughter, or contentment. But I am always super alert through the whole event- watching for cues that I need to intervene to support someone or make a quick exit- which is tiring and detracts from the experience because I am not fully focussed on the conversations in the room or the people there. I always leave feeling drained and tired. And sometimes wondering if it is worth the effort.

And realising this made me sad.

A little bit of the sadness was for myself, because I miss enjoying social situations.

A lot of the sadness was for my two ASD kids, because I started to imagine what their experience of life is like if their reaction to social situations has this effect on me. How much worse must it be from their perspective? I hate to think! I know a little bit of the theory of what it is like for them from talking with psychologists and adults with ASD. I don't really want to know exactly what it is like for them, honestly. I think it would be too distressing to really know. Whatever their experience is, they get to live with it for the rest of their lives. I can help them learn strategies to help them cope, with the help of the right people, but I can never make it completely better for them- it will always be coping.

I'm not sure yet what to do with this new realisation. It is making me uncomfortable. Sad. A bit angry. Mostly sad.

......many reasons to be thankful
I can feel a bit of the familiar recurring grief cycle creeping up on me. Tugging at me to sit with it for a while again, and feel sorry for myself. And this time, because I feel it coming, instead of it jumping up and grabbing me, I feel reluctant to give in. I don't want to grieve right now. I resent that tugging. I dislike the way that grief lurks in the shadows of my mind and waits for something as simple as a conversation about enjoying life to ambush me and cause me to stop everything to deal with it.

Maybe naming it and telling you about it will help me to walk by it this time. Maybe acknowledging that it lurks there will help to push it into the background again, without me having to spend time fighting it.

See, I think that while it is probably true that I have real reason for this occasional grief, that I have so much more to be thankful for. And that is what I'd rather be thinking of.

Thursday, September 13, 2012

Fathers Day

Lots is said about Autism Mums. You know the things I mean.... they are put into cute or inspirational pictures and posted on Pinterest and Facebook. "I'm a Mom with a black belt in Autism", "An Autism Mom does better research than the FBI", and then there's the list of "Reasons you should think twice before messing with an Autism Mom". These are all fine, some are funny, some are true. But sometimes I feel like the Autism Dads miss out on a bit of credit that they deserve. Maybe it's because more mums are blogging about Autism? I can only think of 4 Dads out there who are being vocal about their experiences raising Autistic kids, but I know of too many Mums to count who are in the public eye, putting their experiences out there for all to see.

So, this Fathers Day, I am going to write about the Autism Dad in my household. Because I think he is a hero. His story is likely not unique, but it is one little told. So, here I go.

My Wonderful Husband is also a Wonderful Dad. Of course he goes to work as a nurse, and he is a financial provider for our family. He is many other things, too, but Husband and Father are the two roles in which he really shines.

He is the guy who steps in whenever he is needed. He'll get home from a long day at work and offer to cook dinner because he knows I am tired too. He is the guy who gets up at 11.30 at night and goes to pick up kids from the train station after they've been on a drama performance excursion, even when he has to be at work by 7 the next morning, just to save me from doing it. He is the guy who goes to the shops on the way home from work to get bread and milk (and something special for the kids) so I don't need to leave the house, even though it is out of his way and he just wants to sit down for a while.  He is the guy who works night duty on weekends once a month so we have extra money to spoil the kids with a special trip out every now and then. He is the guy who helps me unload and reload all the bookshelves without complaining when I have a hankering to rearrange furniture, even though he thinks I have too many books. He is the guy who makes a point to spend his days off giving me a  break from the intensity of ASD even when he could use some down time too.

And you know what else? He does it all while living with his Bipolar Disorder and the treatments he needs to manage it.

I have noticed over the past few months in many places people talking about the link between Bipolar and Autism. I'm not sure if the scientific community knows much (I should do some reading), but I do know that more parents of Autistic children are opening up and saying that they have Bipolar Disorder. Much like Autism, Bipolar is something that you can't really explain well to someone who hasn't experienced or lived with it. My Hubby manages his symptoms so well that most people are unaware that there is anything different about him. But this does not mean that living with Bipolar is an easy thing for him.

My Hubby takes numerous medications that help stabilise his mood. He only started taking them as an adult, and he was fully informed of the side effects and risks. At the time he decided to start treatment he was so desperate to get control of his life that he chose to risk it. He lives daily with the side effects now (nausea, increased appetite, weight gain, tremors, constipation, diarrhoea, low blood pressure, head spins, dizziness, severe oedema, sexual disfunction, somnolence/sedation, difficulty concentrating and decision making, sometimes sore liver, liver dysfunction) and he has regular blood tests to monitor the function of just about everything in his body, yet he STILL prefers to swallow those pills every day- he says he'd rather live a shorter life and be of use to me and the kids and be able to work and maintain a sense of purpose, than not take them, be free of side effects and totally useless to anyone for at least half the year every year. To me- that makes him a hero.

So, this Fathers Day, I want to thank my Wonderful Husband, who puts other people in front of himself everyday and who deals with so much and works so hard to be the amazing man that he is. And I want to thank all the other great Autism Dads out there who are like my Hubby. You guys might not feel like what you do means much, but I'm telling you, it does. Happy Fathers Day.

Wednesday, August 29, 2012

The transition to school plan- part 1- The Overview

Many of you, my faithful blog Readers, will know that my littlest girl "MissG" is 5 now and will be starting school next February. She is Autistic and has a lot of sensory issues, so this impending change has been on my mind for a long time, and we have been planning for it for a couple of years.

MissG is not a suitable candidate for a special Autism class (even if there were places available in one close enough for us to access!) as she is very intelligent and is verbal, so we have enrolled her in the local public school that our other kids have attended. I love this school, and MasterL did very, very well there, thanks to the efforts and support of the superb staff there. It is still a stressful transition, though.

The change from a preschool environment with 20 kids and 4 staff in a relaxed environment where the routine is flexible and can be bent to the needs of the kids, to a classroom with at least 20 kids, one teacher and the need for conformity, will certainly stretch MissG's social and sensory abilities. The stress of the situation has been increased recently by the changes made by our state government to the way they are funding support for children with extra needs in schools (and when I say 'changes in funding', I mean 'decreases in funding and making the lesser amounts available harder to access'). Even though MissG has had full time support at preschool and has progressed well with that support, she is not "disabled enough" to meet the requirements for any individual funding to go towards her support at school. The Principal of the school and I have talked at length about this, and we have filled in the paper work to apply to be considered for funding, but it is not looking hopeful.

Regardless of the funding situation I know the staff at the school and The Principal, and I know they will do their utmost for MissG. In fact they already are!

I thought it would be beneficial for me, and for some of you Readers, to keep a record of the things we have done and are doing to help with the transition to school for MissG. I will make sure to label any posts on this topic "transition to school" so if you want to follow the topic through you can use the search bar at the top right of the home page to find all the entries.

Here is what we have done so far:

1. From the time we knew MissG is Autistic and that she would be attending The School we have made a point of having her at school as much as possible, even when it may have been more convenient to leave her at home.
This has included
- attending playgroup weekly at the Community Hub on the school grounds to help her get to know other kids in the school community
- bringing her into the playground every morning and every afternoon at drop off and pick up times and making a point of talking about the schools expectations of behaviour in the playground as well as the unspoken expectations (like that you have to be careful not to walk through other kids ball games), and encouraging her to talk to various staff members around the school as we wander around
- taking her into the classrooms with me when I go to help with reading groups in K's class so she can get an idea of the way you are expected to behave in the classroom
- taking her with me into the office when I go and talk to the staff there so she knows the ladies who are there and who will be likely to care for her if she is hurt or sick
- going for visits to The Principal's office to help her get to know him and so that his office is not an unknown and scary place
- bringing her to all school events possible like Book Parades and Sports Carnivals so she sees school at it's busiest and noisiest

2. We have had lots of assessments done. MissG has been assessed by a Speech Pathologist and an Occupational Therapist and the results of those assessments have been made available to The Principal. This will help him and The Kindergarten Teacher next year know better what to expect from the point of view of other Professionals, and give them information about some strategies they have used successfully when working with her. MissG also sees a Psychologist who will work closely with the school as MissG begins the year next year, providing them with Professional Support and ideas and tips on how to handle anything "tricky" that may come up. All these assessments and therapy sessions cost money. We are fortunate enough to have access to some assistance from our Federal Government to pay for some of these things, but I'll be honest and say it has still cost us a lot!

3. We have enlisted the help of a Family Support Worker who meets with me regularly to talk through any concern I have and be of support to me and Hubby when we need it. Recently she helped us organise a Case Conference at which we met with everyone who has been involved in MissG's therapies and everyone who will be working with her next year. It was fantastic to have them all in one room to meet each other and share ideas about how the school will best be able to meet her needs. Hubby and I left feeling truly encouraged at the provision of some amazingly dedicated and compassionate people involved in our little girls life. As a group of parents and caregivers we were able to put in place a plan of what needs to happen over the next few months with tasks being offered to be done by various members of the group.

Here is what will be happening over the next few months:

The School runs a transition program for all students entering Kindergarten, and MissG will attend that. She will also be taken for extra transition visits both by myself and by an Itinerant Support Worker who has been working with her at Preschool. During The School's organised transition visits MissG will be expected to participate as part of the larger group. In the visits with the IS Worker and myself she will be in a one on one support setting.

MissG and I will be meeting with The Psychologist regularly over the next few moths for the purpose of working on issues around social situations and to help give MissG at least the theory side of some of the skills she will need during a school day. The Psychologist will be able to use the knowledge she has of MissG and her needs to help The Kindergarten Teacher know how best to support MissG, and she has offered to help set up a calm down space and other appropriate environment modifications. We will also be developing a kit of social stories to use both now and when school starts.

It might be useful for some Readers to know that in some areas you will find programs run by community groups that provide extra transition support for Autistic Children. In our area the program is called "Kids on the move". MissG's IS Worker helped us apply for that program. Unfortunately there were 60 applications from High Needs Autistic Children received, and funds available to accept only 10 of them. MissG was placed at 5th on the waiting list. It makes me sad that there are so many children who would benefit from this little bit of extra help and our Government just doesn't see the importance of providing for that need. Anyway, it is worth asking around at places like Early Intervention Centres or your Community Health Centre to see what they know about this sort of program.

That gets you pretty much up to date on what we are doing for MissG's school transition. I'll let you know when there is more progress to report. I hope some of you find this information helpful in developing your own plans. Please do ask questions if I've left anything unclear. 

Sunday, August 26, 2012

My new favourite thing

When we go out as a family Hubby and I have an agreement we use to manage "tricky" behaviours and make sure everyone is safe. It goes like this- One of us looks after the 4 older kids and the other looks after Autistic MissG.  13 year old Master L is on the Autistic Spectrum as well, but does not have such intense sensory sensitivities, and has never been a "runner". He can also tell us when he is struggling with feeling overwhelmed, so whoever is watching the older 4 just needs to be aware to check in with him periodically and he will be safe. 5 year old MissG, on the other hand, has a lot of sensory sensitivities, and it is just a normal part of a day out for her to have a few meltdowns and/or run and hide at some stage of the day. So one of us watches her like a hawk and supports her while the other keeps an eye on the other 4 kids. When the G-watcher gets tired, we switch. Being the G-watcher is a tiring job, so we often switch a few times over the course of an outing, especially if we are somewhere really busy or somewhere we are not familiar with. When she was a bit smaller we had the option of putting her in our Macpac back carrier, which was really useful, but she's just too big for that now. The most tiring thing is that you can't really take your eyes off her. It sounds like an exaggeration, but it's not. Sometimes, if she has a slow build up of sensory input that causes an overload, there are warning signs- like covering her ears, trying to hide behind you or yelling at someone (anyone!!). But if the overload is caused by someone unexpectedly jostling her, or a sudden loud noise or change of environment there is no really noticeable warning and she will just bolt. I have now lost count of how many times we have "lost" G. We panic less (but still panic!) about the bolt now than we used to because we have learned that she doesn't go too far. She finds the first available "safe spot", usually somewhere small and dark (you'd be surprised how many small dark places there are in this world) and she sits in there until she feels better. She will hear us calling her name but still not come out or respond at all until she feels calmer. It's not nice at all to have that happen and have to figure out where she is and wait out the calming process. So- you just can't really take your eyes off her because she can disappear in a second and it takes a long time to restore order, so to speak. I actually prefer it when she has a meltdown because I know where she is and I know she is safe. Meltdowns are pretty confronting for people who don't know what they are looking at though (and even for some who do know!!), so avoiding them is nice.

We went on a family outing this weekend. We left in the afternoon, went to a busy market, then out to dinner and we saw a movie that started at 7pm. We knew it was going to be tricky for her..... plenty of people to bump her, heaps of visual input, loud noises and bright lights, having to eat somewhere new noisy and with different smells, and the unfamiliarity of a cinema with it's huge screen and loud volume. We would also have her out past her normal bedtime, so she'd be tired, but we counted on her sleeping in the car a bit at some stage on the way to one of our destinations.

And- we had a new weapon against sensory overload with us- her recently acquired ear defenders. We call them ear muffs, because it is easier to say. They look like headphones, but have no speakers in them. They are well padded so they are comfortable, and G likes to wear them. At first we just used them at home to see how they went. She tried them when there was loud music on or if someone was talking when she was feeling overwhelmed (sometimes she says "everybody stop taking") and they seemed to help. I was reluctant to use them outside the house because I worried that they would bring attention to her and single her out as being different, but Hubby pointed out that if she's having a meltdown she pretty much stands out anyway. Add that to the fact that she seems completely unaware that anyone else even notices her, and I decided to let go of my overactive anxiety muscle, and bring the ear muffs for her to use if she wanted to.

It was like magic.

We were out for 8 hours and we had not one meltdown or bolt. She remained responsive and reasonable the whole time, held my hand when asked, and mostly behaved like the other kids (aside from some flapping and inappropriate volume). We did have a moment in the restaurant when she decided it was time to leave but others weren't finished eating yet, and she was very restless in the cinema. But- not one single meltdown and no running away or hiding. We had the ear muffs out all the time and she just put them on and off as she wanted to. It was like having the ability to control just that one area of sensory input gave her the help she needed to manage regulating her responses to all the other input she was exposed to. The ear muffs don't stop sound from reaching her at all, they just make everything quieter. We can still talk to her and she hears us, but she doesn't get all the smaller sounds as well. Wearing them is like someone turning down the volume to everything except the one or two loudest things in the area, and it makes sounds seem further away. The outing was so much easier with the ear muffs that I am well and truly over my worries about how they look on her. Actually, I think they are my new favourite thing.

Wednesday, August 22, 2012

Selfishness and feeding my soul

I'm sitting at my desk this morning, using some time alone in the house to catch up on some paperwork stuff that I'd like to get out of the way. The room behind me looks like a bomb went off in it.... and the bathrooms need my attention..... but I deem this to be the best use of my time right now because I can get it done much faster when I'm uninterrupted. Besides that, I need to be still from all the running around I've been doing with appointments and meetings. So- paperwork it is. And a couple of phone calls, which turned out to be quite disappointing.
So I am sitting here beginning to feel cranky about people who say something and don't follow through, and other human flaws....  when I look slightly to my right at the orchid I have sitting next to my desk. It is in flower at the moment. And it is exquisite. I am reminded again of how much beauty surrounds me every day if I just stop to look at it. I feel myself calm down, and I prioritise again what I will spend my time on. It certainly won't be other people letting me down!
Moving on with more positive thoughts I manage to get through the rest of the to do list I had, and now I'm going to hang out with the chickens for a while in the gorgeous sun. Just because I want to, and because it will feed my soul a bit. In all the looking after of others I do, I am finding it more and more important to do this from time to time. Something just for me. This is different from doing something that is for me and someone else- like when I spend time researching, or writing letters as an advocate, or doing the washing, or even spending time with good friends. Those all involve giving to some extent. I think there is something healthy about a certain amount of selfishness in a parent. Doing something just for me, that does not involve me giving to anyone else at the same time, provides a different kind of recharge.... maybe a more intense recharge.... that is so beneficial. It allows me to feed my soul and my energy stores without depleting them at all at the same time. That is worthwhile to me, as it means I have greater energy reserves for when they are needed by other people. And I just plain feel better.

Saturday, August 18, 2012

Keeping up....

My Wonderful Hubby could see I was struggling to keep up- I have been sick- and he gave up his work weekend to spend time with MissG and gave me a rest. I didn't realise how tired I was until I stopped. I spent the first day laying around doing nothing. I spent the second day sitting around catching up on stuff I could do while sitting around. Aside from the fact that it is nice to be looked after in this way by my Husband,  it was nice to have reminder of how much work it is to keep up with MissG when observing how trashed he was after spending 2 days with her!! I felt my tiredness had been validated in some way, and that I needed to take the opportunity to be reminded of the fact that I need to take care of myself.

As time goes by I am more convinced that caring for an ASD child is something you cannot even begin to understand until you have done it. Not just a bit of babysitting, but been there- as the child's primary caregiver- day after day. The language available to us to describe the behaviours is the same as for any other child- meltdown is a term widely used these days, overload is assumed to mean they are a bit past their best. But when the parent of an Autistic child uses these words they mean something different. I have talked about meltdowns and sensory overload before here. Until you have lived with it, you just can't know how exhausting- physically and emotionally- it is. And that is just from the parents perspective! I read a great blog post today on how a meltdown feels to someone with ASD. It is on a blog called 'Aspie Warrior', and you can read it here. Supporting a child through the experience of a meltdown and helping meet their needs, while making sure your other kids needs and your own needs as a parent are also met is quite the juggling act some days!

Some days it just feels like you are barely keeping up. Or not even keeping up. Yet the pressure to do so much more as well is ever present. We *should* have a tidy house, washed clothes, kids homework done, healthy food on the table, bills paid on time, smiles firmly affixed, and everything looking "normal".

Well, I'm going to say here and now that I am tired of this kind of keeping up.

I am happy to make time to keep up with the important things my kids want to tell me at the end of a school day, and to keep up with the changes in policy that are affecting my kids education, to keep up with making sure my kids know they are valuable and loved, to keep up with maintaining relationships that are beneficial for myself and my family- the relationships where mutual support and understanding exists.

But I am over the type of keeping up that puts unnecessary pressure on me and my family to conform with the normal that makes others comfortable. I am by no means planning to start a new trend in unhygienic living- but I am going to be more aware from now on of my own reasons for doing things and be more careful to prioritise my time and energy expenditure. The washing and cleaning will wait. As will being the parent who is active in this and that and spends days racing here and there looking busy and supermum-ish. My kids need my attention now. They need me to have the energy to advocate for them. They need me to be rested enough to speak clearly and and truthfully on their behalf, and I'll not be spending my energy and time keeping up with societies expectations of me as a housekeeper and Stay-home-mum when I need it for more important things.

You have been warned!

Feel free to join me if you like!

Friday, August 17, 2012

Pregnancy, paperwork and other distractions

I've not blogged for ages!! Sorry about that Everyone! Here's a bit of an update on major things that have been happening in our household.....
I'm pregnant. We are expecting baby number 6 in early February 2013. The kids are all very excited. Now that I'm past the 24 hours a day nausea stage, I'm getting excited too. Those first 3 months were long and trying. I feel very lucky to have my Wonderful Hubby around looking out for me, making sure I rest and eat, because to be honest there is so much else going on it is easy to forget to stop and look after myself some days.
I have been to so many meetings and appointments, and filled in so many forms in the past couple of months. The most irritating form I've had to face has been recently. The Principal of the Primary School and I have to fill in a form to apply to be considered eligible to apply for individual support funding for MissG next year. Yep- you read that right! We aren't actually applying for the funding- we have to apply to be eligible to apply. And there is a 30 page document that explains to you what sort of information they need. To be honest, I am not at all convinced we will be successful, either. The form is geared heavily toward children with either intellectual disabilities or physical disabilities like deafness or blindness. The fact that MissG needs full time Teachers Aide support to be successful at preschool counts for nothing. Nor does the information in the Occupational Therapists report describing her as a child with high support needs.
We are at the Psychologist almost weekly at the moment between MissG and MasterL. We love our Psychologist because nothing phases her. She helps us think clearly about the situations we face and is great at arming the kids with strategies that help them cope with situations they come across at school. 13 year old L is finding the abstractness of social interactions increasingly tricky as his first year in high school goes on. And he now has much less one on one support from the Teachers Aide he had been assigned, thanks to the "Every Student Every School" policy that the Government claims is making resources more accessible and equitably distributed.
I have been carrying on with my advocacy efforts in the background of everything else I do, attending meetings and just generally being the squeaky wheel in conversations around the place, letting people know what the real impacts of the changes to funding in schools are.
I am going to meet with our Federal member of Parliament in a couple of weeks. At least, I'm planning to. The appointment time has already been changed once by her since I booked it in, and I'm kind of expecting it to be changed again! It really does confirm my suspicion that hearing from people in the electorate is not a high priority when I get a call saying "something" has come up and she can't keep the appointment time we made. Along with the long-time-coming and very dismissive "thanks for letting me know of your concerns" response I got to my very detailed letter, I think it is fair to expect that not much will come of that meeting. However, I have to keep trying. As I explained to my 16 year old when she asked me why I am putting so much effort into this when nothing is going to change- at least when my Autistic grandkids ask me why there is no support for them in school I won't have to say,'there used to be, but when they took it away we all just sat there and didn't try to stop them'.
Anyway, that's a bit of an update. I'm going to try to keep  bit of a record of all the things we've done to prepare MissG for school, as it could be helpful to some of you. Aside from that, I'll do my best to blog more often over the next few months, but if you don't see much on here it's just because things are so busy! I wish the people who make these policy decisions actually had an idea of the real impact made by their number crunching solutions to what they think the problems are. I wish they could experience the results of their decisions the way those of us with kids needing extra support do. I used to have so much more time to spend actually being with my kids. Now I feel like I am so distracted by the work it takes to get them the help they need that I'm often not actually being any help. And that is frustrating.