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.