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.
Sunday, October 28, 2012
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 (visual, auditory, tactile, olfaction, gustatory, vestibular, 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.
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.
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 honest.....no 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?
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!
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?
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).
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?
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