Fear in flight

This post is really all about me! This is about another side of my life, the working side. This week I faced the unusual situation, of being threatened with a knife, this happened while on a home visit as usual on my own. This really was a first in community for me, and it is something that has gotten stuck in my brain that stupid question of what if, well more than one "what if I was seriously injured?" "what if worst case it killed me" "what if I was not found" the questions continue. The big ones were more about my family, what would my husband do, how would he manage on his own to do it all? How would he manage financially? Would he be able to pick up and carry on with our lives? The biggest fear now is my family and the realization of how reliant we are on each other to assist the kids in there every need, how. We juggle so many things between us, and have such a limited everyday support system. The fear of the what if left me numb. It left me feeling very alone and showed up some major flaws in my current family functions and supports. Of course the incident showed many other flaws in systems at work and so on and a bitter taste, but that is work. Know daily the things that we do, knowing the things we struggle to do with two parents, how can one parent manage this. Have the husband and I shared and really shared our long term plans and expectations for our children. With the way that everyday is different, with all of the work we put in, there is no simple equation or expectation we can have for their future, we simply have hope and determination and simple knowledge of worst case scenario and the fight to ensure that is not our children's future. The discussion for our children's future is sometimes cut short due to the depressing nature, reality often outweighs hope. My brain in its state then went to the next level of horror, what if we both were gone? What then? Who would take on this task of three beautiful children that require such interventions on a daily basis, our lives are not simple enough to state medications at this time and bed time at that time, it's complex in ensuring we push them within safe limits and yet shelter them from the things that are ordinary and everyday and teach them as they are ready to learn. We have plans and strategies to get dressed, eat meals and go shopping. We are often surprised by meltdowns we do not see coming, and often more surprised when our children cope in settings that we were most fearful of. Our job starts when they get up and goes into our sleep time. Who would take on this mammoth task? Who would do it in a way that was loving and in the children's best interest? This question has left me haunted by worst case scenarios. The husbands simple answer "don't die, don't become totally incapacitated!" mmmm One incident at work raises many questions for home.

Chaos multipled

Our home recently has been covered (and still is) in dust and grime, our household more than usual has been thrown into chaos. We have finally decided to renovate, this has been a long time coming really, we moved in knowing the kitchen and bathroom needed doing almost four years on here we are.... This has brought with it the usual tears, limited coping skills and need for calm and sadly that is from the parents. Going in to this we felt prepared, but really nothing could prepare us for the things that have come about. The non verbal, the meltdowns the angst, tip toe walking and flapping that chao brings. The kids have lost not only structure and routine, but all things in the house have been moved around, we shower in a mobile bathroom on the driveway, we use the toilet there. We cooked our meals in the youngests room and our boys went back to sharing a room. Currently I am pleased to report that as I type this they are back safely in their own beds in their own rooms oh the joy and calm that this brings to us! Our household has been turned upside down, we have had trades of every sort through from early till late. Kids and us have watched as the kitchen and bathroom were packed up then demolished, then so slowly rebuilt, and not quite the same as before, the anxiety this has brought about from all three children in such individual ways has been trying, so very trying. Of course for all the stress it has brought I must admit to my excitement at having a new kitchen and bathroom is my driving force, I have waited for this! Lived with the horror bathroom and dealt with the daggy kitchen. Renovating on tv looks so much simpler than this, in real life there are children running around and in our real life we have the 3 now 4 yr old checking out power tools, power points and where the trades store the keys to the various utes they all drive. There is nothing like a small child attempting to "borrow" a ute! On tv the decisions seem simple in real life we are faced with costs and time frames and durability, in the autism life we ask is this over stimulating? Is this too much when they are out of sorts and needing a bath to wind down/calm, is this practical for a family of five? So many questions and so few answers, and most of these big ones are asked while trying to get a meltdown into coping mode and prevent the youngest from driving off in a ute. Life has been chaos still really is, but right now we are at the pretty much at the complete stage, big decisions made main work completed and house slowly moving back into some semblance of order. I wish tho putting the house back together was as simple as putting the kids back together..

Whine time!

The guilty, pleasure of time away from my children, early last month, was wonderful and hard at the same time. I was away for two nights over the long weekend, with a bunch of old school friends , down the south coast during the wine festival (coincidence!)

 For me the wonder was in having a shower without children or an audience, it was about doing things at a different pace, having a continuous non work related adult conversation. (part of me had forgotten how that goes!)

It was a refresher in social skills for me as an adult. It made me realise how much as a parent to autistic children I can shut out when out with them socially. My focus id my children, my focus in on helping them cope and micro managing situations.

My time was also filled with the dreaded guilt of “hope the husband is managing”, hope the kids are coping with the changes. Hope we prepared them enough for this.

Sadly there was also an incident that left me feeling somewhat panicked and incredibly guilty, they had an unexpected visit from some of the “sometimes visitors” (once to twice a year visit) and the kids had no planning or prep for this. I wanted to run home and help, I wanted to go home and calm them and talk them through the changes, I wanted to support my poor husband dealing with three off children on his own, attempting to engage his family and the limited knowledge of autism they have. MY instincts to drop everything and leave were incredibly strong, really I was only 2 hours from home, but two hours and a few drinks not making for a great combination (mummy was in wine country!).

I felt guilty that I was not there, I felt angry that these visitors could not give notice and had a sense of entitlement to my family, I felt angry  and lost, there was a tiny part of me that was pleased my husband had allowed this visit and it was chaos…(that really is another story)

It was hard for me to disengage my parent brain and focus on the social aspect of being a real person and part of something non child related or work related for such a long period of time. I am now more used to getting out a bit more to movies once a month, to occasional coffee in the evening but not that amount of time! It was a fabulously hard learning curve for me. I truly enjoyed my time but at moments I felt so incredibly guilt ridden and anxious that i was not present with the people that I was with. My time without the pressure of appointments, work, meltdowns, getting things right for the right child, was something out of dreams, it was a whole new world, a world I had forgotten existed. I could sit in a different spot without the world around me erupting, I was able to go to bed tired but not exhausted to the point of collapse. I guess that also there was that moment of oh wow life is not like this our world is not the normal. It made me understand why I feel so exhausted and drained. As hard as this life it its not something I could ever walk away from or stop trying to make our life's easier/better. I felt pleased and relieved to get home. When I arrived home the kids were excited to see me, my husband somewhat relieved! (he really looked allot paler, and exhausted) it was home, home with my people.

First round

Yesterdays mail brought with it some less than kind news, the school we were super keen on for Lilliana , we were unsuccessful in getting her placed in the first round of offers. We have already signed up for round two!

Breathe in and out….. this is the moment I kind of want to throw myself on the floor in full flight tantrum. Instead we signed more papers, crossed our fingers and are now focused on round two.

Mentally I am not prepared for this rejection, my plan is she will go there, my plan B is not emotionally connected to the actual plan, I am stuck on plan A.

Sometimes it feels as though there are just many battle to be fighting, sometimes when you are starting to recover from the last one your hit with something else and the fighting resumes. This is how I feel about living with autistic children. As a parent we are fighting systems that have little time or resources for this, any parent with a kid with additional needs feels this same frustration. There’s is a big gap in schooling, health and social awareness. Working in health I am all too aware of service gaps, and failings.

Sometimes with this diagnosis of autism there is either the battle to get a diagnosis, or the battle of being given the label! For us it was a mixture, we knew things were amiss with Lilliana, we had some big concerns but allot of little ones. The preschool had concerns, the GP had concerns, but the Autism diagnosis took me by surprise, it makes sense the more I have learnt and questioned the professionals. It was the moment that it made sense to me that I felt completely devastated and overwhelmed by it. Prior to my moment it was simply a range of small tasks to bring her up to speed with the Neuro typical kids, when really Lilliana is always going to be well Lilliana, but Lilliana with autism. We are always going to have these things were are trying hard to keep her up to speed with and normalise.

But the frustrations of schooling they are something else, these stem from our hard and trying experience of placing our older son in school and all of the hurdles that we faced with that. This is a different child with a bunch of different needs, but still the same hard frustrating battle. The battle for us as parents to help get her into school where she will be treated respectfully, where she will be challenged and understood, where she will be nurtured. Often times within the school system autistic kids look like the naughty kid or the poor coping kid, there are multiple stats on a higher rate of suspensions among these children, and all of the negative vibes that goes with that, the labelling, the bullying for peers and even staff and the frustrations experienced by the teacher and the student. I don’t want to set my child up to fail. I don’t want my child experience of education to be so tainted due to autism.

Sadly at present there has been a further shift in funding, and cuts to supports and placements, yet the need has not decreased, this is making me more nervous than ever of attempting to rely on an very flawed public education system. Our options are so limited.

This schooling frustration just continues