The night before kindergarten

In our house tonight it is the night before our middle one starts kindergarten.
Having done this once before I feel even less prepared than before (Caiden this year slipped into year two).
I am aware of all the practical side of things she is ready, she has been prepared and transitioned for this, she is going into the right class environment with the right supports lined up, we have been preparing for this very moment, but right now in my mind this is the tiny pink bundle we brought home from the hospital. This is my baby girl who only last week I nursed post surgery in my arms. This baby girl we have cried with laughed with and honestly been overcome with joy and fear for and by her. Lilliana has shaken us as parents and our family, she brings with her a certain amount of sunshine that we had never thought possible, she makes us laugh with her phrases and sayings regularly.
My baby girl is about to go to school and wave her infancy goodbye for good. This little girl who in my mind has just mastered walking yet in reality she still has not mastered it she has mastered skipping and dance walking but straight walking not really her style!

Lilliana is excited for school and her next adventure, and I am honestly pleased it will make walking away with teary eyes that much easier, but the idea of her being with another person for so much or her waking day, sharing my little girl with another person, entrusting the person with her is hard. Ensuring that the Lilly bouncy happy giggly girl I send is the one I get home, I worry about others influences on her confidences, and her educationally, it's such a step of trust to leave her.
In our household  for the last five year we have already shared her with preschool and with therapists and other playgroup friends, and on occasions family as well, but most of her hours have been in settings we have largely had control over and known all of the teachers
and professionals. Lilly also doesn't really spend weekends away or anything like that, last year she 
had two sleep overs with both her brothers for a night with her aunt, and again we know that she is 
there for joy (and to save our sanity, to support us as parents in this difficult journey) this aunt just 
listens laughs and enjoys or rides the crazy! She has yet to attempt to tame it!  

Waving off my little girl tomorrow is just the first of many big steps that now loom in front of us, it is another set of firsts that to think about your baby doing. Is daunting, to think of a child with ASD doing it, it can be that moment that fear paralyses you. For now I am attempting to not look to far just look at tomorrow this is a big enough day for all of us, this is the beginning of a long period of schooling. 
There is so much fear for me sending another little one off to school, the fear of bullies, the fears of her not comprehending what is happening, her limited skills with communicating emotions and feelings, spending more time trying to unlock another child or calm my child after such huge days/weeks, the fear that surrounds sending a child with ASD to school, these fears stem from past experiences with sending Caiden to school, and yes these are different children but sadly there are a few similarities. 
Tomorrow with fear and joy in my heart I will hug my baby as she walks into her class I will remember with love bringing her home, holding her hand while she learnt to walk, feeding her and be secure in the knowledge she will be where she needs to be, and my heart will always remember the privilege it is to hold her hand and raise this beautiful girl xxx 

Back blogging!

Wow it has been awhile since I got posting here.
To bring things up to date or there abouts!
Life is still happening, all around us, with us and to us.
Life has not stopped, paused or give us time to catch up!
The last few moths have passed in a flurry of school prep, coming to terms and grasping the youngest diagnosis, and getting more things underway for him, Christmas, work, uni applications, transitions, surgery and more!

My big guy Caiden wow he is a star, last year for term four of his school term he was transitioned to another school as he had a fantastic year, a settled year of growth, development and maturity. It was something as a parent watching we always wished for but to watch it happen was something amazing, something as I type gives me goose bumps thinking about. This guy has has a year of solid progress, a year we could see other years of dedication love and our struggles shine on through.
He is now in a mainstream school, still in our safety net of an autism unit, with 6 kids 1 teacher 1 aide. But he has left a very protective, sheltered environment into a very big mainstream school, it is exciting and nerve wracking at the same time, but this guy is just doing great things. He pretty much did a years schooling academic work in about a term! And happily!

Small things have been exciting, access to a school library, school canteen, also having him at a school closer to home.
Caiden also started attending a before and after school program occasionally, and the kid floored me by being the most settled, and kept trying to socialize with his peers, social seeking appropriate!
He is just is a good place right now, our speech, OT, early intervention, social skilling it's starting to pay off in a big way!

Lilliana, well this little one is now off to school very soon days in fact now. What a ride getting a placement has been, one we had anticipated, but difficult all the same. We had our hearts set on one school which we were knocked back from, another setting that we were knocked back from and then out of the blue we got an offer from dept of Ed, a new class is opening at a local public school turns out two new autism units, and jnr units k-2. Several meetings phone calls and a transition period we have a school a class, and wait for it there is another girl in the class!
As time pushed towards Christmas, we have seen some big milestones past, better social engagements, better emotional recognition, better emotional regulation, don't think for a minute the whirlwind is all roses and smiles, but this little whirlwind is finding life some days a little simpler, which in turn is letting us step back and be guided by her.

Elijah, well as a parent of him I have had to come to terms with his diagnosis more recently, learning more about this giant spectrum, learning more about how we can assist him and what things will help him long term and us short term.
Elijah last year finally started with his own psychologist ( getting one for him was a bigger deal than we had ever thought possible!) this has been an ....interesting time.....really watch this space!
We had to call it a day with one of his mainstream preschool settings and for this year are just focusing on the better environment for him, unfortunately for us while it is a better fit, the hours don't help a parent be able to work very simply, especially having two other kids in two different schools.
It's things like right settings that are important the centre he has been attending since he was old enough to attend preschool have not only the staff but the patience and the ability to one on one him, to implement behavioral plans and educational plans hand in hand, this is a rare thing in preschool settings.
Home life has been busy!

The final diagnosis, the autism sentence

Another child another diagnosis. This time my baby most recently was diagnosed with Aspergers, also given the title of autism spectrum disorder. That's two kids officially this year.
The harshness of the finality, I had hoped again the paediatrician was wrong, and again that our instincts were wrong, but no .
This is not my first or even second it is my third child, and nope it didn't hurt any less maybe this time a little more, officially we are three from three, I live autism, breath it and currently at this stage today really feel like its a sentence.
The reality of autism, the cost the hours the patience, the fight for services, the decisions, the fight for education it's exhausting, it's wearing. its at times isolating and fear inducing.
The greatest fears of what decisions we make today will have long standing impacts on our children's lives forever.
Our decisions are still being made not only based on what we want for our children but how we can source things services etc, and even the horror of what can we afford. Three kids in need of all this extra help, three kids also really needing life to be as normal as possible and the same opportunities as the neurotypical kids, these costs added together are soul destroying. I work to get in further debt, and still not everything is met.
We are not a family fortunate enough to have vast amounts of practical daily supports, who am i kidding the biggest family support we have had this year was a sister has babysat for us and is planning on doing it again, so two nights this year. We don't have family to dive in to do the practical stuff like afternoon pick ups or watching children while we are at appointments with the other children, we take two or three kids to most appointments. We don't have the luxury of having someone assist with meals or shopping or just having us over to take some pressure off. We do it alone, at times it is an incredibly lonely isolating experience.
Right now I am having a full blow anxiety invoked pity party, this final child diagnosis has torn my world apart.
this pity party has me thinking years in advance of what happens typically with these Aspergers type kids, the lack of supports and funding available to them the long term impacts emotionally and financially. Working where I work seeing the things I see sometimes is hugely detrimental.
It has me thrown into chaos about where we are currently living and our local and state government decisions on education needs and support, are we living in the right state for them to get the correct access to things they need, would living elsewhere benefit us financially so we are receiving more services without the price tags?
Right now everything feels unsteady its this crazy fast moving ride.

That brick of grief

September is a hard month no matter what for me it is a month or a time frame that is first filled with anticipation and guilt and then grief. Years has not dulled this eight years now to be exact.
This September marked eight years since we said hello and goodbye to our precious Isabella.
Time has not healed this wound it has taught me how better to mask my grief and fear and loss but not dulled that sharp ache of loss.
That awkward moment  in conversation when asked how many children or even is this your oldest? never really having the right response do I say actually no we had a daughter before, or the number of children here on earth, it is hard and sometime riddled with guilt that I answer that question.
Time has not dulled hearing her name raised in other peoples conversations or me staring awkwardly at any child with her name. It has made me all too aware of her age and of the gaping questions of who whould she be? how would she look, and in our household would she too have Autism?
Time has not taken that ache from my heart that she left, the loss that selfish loss that makes me want her with me.
Her anniversary brings grief and love, love that has not stopped without her with us and that confidence that it never will.
My grief has shown me strength I never imagined possible, it has humbled me at times. My grief is a reminder of how deeply I loved her, how much she is missed from my life and our family life, things were never the same.
Grief is always present, September is the month I really allow myself that time to wander in my grief and my loss it is that time I allow myself, that reminder of what is lost. It is the time we also attempt to celebrate her life, a life that was made with love.

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.