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?

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.

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.

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.

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. 

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.

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.