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.
Monday, 8 October 2012
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.
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.
Subscribe to:
Posts (Atom)