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.

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

LEGO OH

This past weekend, we were brave and spontanoues, well for us.

Last minute we saw something for the brick show (Lego Convention) at the Powerhouse museum in the city. We decided to throw the kids in the car and take our lego lovers in to the museum in the pouring rain.

Three very excited children in the van, one rainy drive into the city, I think my excitement and bravado was wearing off as we parked. We put the youngest in the pram, Lilliana had her harness back pack, and Caiden had some fairly firm intructions on hand holding or holding the side of the pram. We dashed throught the rain up the steps of the powerhouse to see the queeing. OH NO. Some quick movements and we found a membership line moving fast, at that moment I sang my sisters praises for giving us a membership. That line moved quickly in. The children were burning with excitement, not only was there Lego here but wait for it The Wiggles exhibition they loved is also here.

We headed stright into The Wiggles land as that was something they loved last time and as parents we knew only one exit point and lots of hands on activities. Once inside with three free range children the majority of it went very well. No major meltdowns, some anxiety around the crowd (but not all of that came from the kids...) they played and made things and enjoyed the Wiggles.

Out of the Wiggles, back into the pram for Elijah which was no small effort, and on to the first part of the Lego, this is where things got harder. The crowd at the Lego was huge, at one point poor Mick lost Caiden for a moment (he reacalls it as the worst two minutes and the longest) over excitement and fear then lead to our first “break” we headed for the members lounge (again sister membership is awesome) the kids had a moment in an area with one exit point, we had a cup of coffee/tea and the kids had a snack and drink and play, all of us calmed, Caiden had a moment to cry over being lost (my heart broke for him he was so scared it was all over his face) he kept pretty close following that. Energy and coping levels of everyone higher we went back out to Lego land and the crowd, the excitemtn from Caiden was amazing, the excitement from Lilliana at the pink palace and the gardens was amazing, the request from Elijah to take home the Lego yellow submarine far from amazing, Eli attempting to bargain over it, “mum I have the shirt”, “dad has the song” “It will fit in the pram” even less amazing!

We lasted allot longer out this time we had a good hold on Caiden and he on us for most of it and Lilliana was just in awe of all the Lego, Eli spent too much time looking for bits he could grab....

Insert another break and we then went back to finish off the Lego area! Then time to head out as we are leaving we see a lego play room..........LEGO LEGO LEGO! All three kids who had been soing so well really did not do so well in here. There were really not enough Lego in there for the amount of kids so they were sharing...yay..to be honest they all tried hard to share but it was not really going to work out for the best so we called it and tried to move on not with out coaxing, soothing, bribing, usual parent tactics!

Lazy parenting lead us to china town for an early, cheap dinner. Lots of yumminess on the table Eli picked his one dish he liked and ate that Lilliana picked about three different things and Caiden our champion eater ate everything placed on the table, it was a messy but enjoyable dinner.

The drive home was silent, three sleeping children, quick transfer into the house pajamas and at 6.30pm all tucked into bed to dream of Lego.....

Which we have heard about for almost a week

Connections

This morning in the moments of chaos (somewhat ordered) there was many moments of connections, beautiful simple connections from all three children.

This morning the kids were all excited as there are some new DVD’s in the house for when mummy is away and daddy needs a moment. Excitement was high.

This morning as we all staggered about the house getting breakfasted and dressed I sat at the table with just Elijah having some breakfast and for part of it we held hands and chatted, about 3 yr old things, “why don’t we get cheerio’s?” “how much power is in that light bulb?!” he chatted about his favourite preschool teachers. It was a somewhat normal 3yr old conversation he did also ask for an Iphone, to call people on and play handy many, this conversation held with it good eye contact, hand holding and smiling. Simple but wonderful, just the quiet moment with Elijah.

Caiden this morning was simply the most animated I have seen him in a morning for a few months, beautiful eye contact and he initiated two hugs!! Just walked up and hugged me, the last few weeks on offering of physical contact he has either responded no or just a little one, last night in his sleepy state on the way from the toilet he gave me a huge beautiful hug, this morning I got two, they were worth the wait. I see the value of his physical touch. I see in him at times how hard that is and know, there are times he does it as he knows it is something mum wants not something he wants or craves.

My Lilliana (the last up!) was calm, not her usual bouncy bumping into walls, calm and animated (those that are worried she is fine!) her speech was rapid and her hand did allot of movement, but there was purpose to most of her movements this morning, less flinging her limbs about more purpose. Lilliana was focused and her conversations were happy and excited (that is something I do truly love about her) but she not get distracted by the shiny objects around her or her own flippy hair! Lilliana was present for an entire lengthy conversation (lengthy for her!)

This morning in the chaos there was simple beauty, there was some of our hard work winking back at us.

The assumption of caring

The frustration and hurt when you are struggling for assistance and acceptance and when you receive nothing in return, the frustration when worse than nothing is the minimisation of pain and struggle.


My parents are now assuming care of my brothers twins, the same parents who have not even babysat my children in over two years, the same parents that have not been to visit my children in their home for two years. The hard slap in the face of family yet again.


It is hard to completely walk away from family, but at moments like this I completely understand why people can do it. we receive almost no acknowledgement of our current situation and no support from my parents, they have assisted almost nothing. The most assistance I received last year some groceries delivered by Coles when my husband was hospitalised and I was struggling with three kids on my own.


Family is something that I have struggled with my entire life, really I guess why would adulthood prove differently? Perhaps I am not destined to be in that type of relationship despite the work I felt I put in as a young adult. Family life was always dysfunctional at best, simply put separated parents during primary school years, I left home at 15 to live with another family and really never returned home for more than a few months as a young adult. My relationship was always going to be outside normal given this start.


Where I feel let down is in my own assumption of what caring is, how I want this to be shown, in my family between my siblings I would love to see equality, my parents have made efforts to babysit my sisters kids, to visit my sisters kids but for me I am nonexistent most of the time. I want my parents to do the same things for me that my sisters get, in particular my children their grandchildren to be treated like the other grand children. (Although I also want them to understand the autism and our current treatment plans and goals so they can better deal with and engage with our children, so really I want more!.)


It is the picture of what is happening around me and the image in my head of how it could be that is simply ruining my future relationship. I can accept that my parents can’t deal with my life, lots of the time I struggle to deal with my life, but the thing I crave most is that honest dialogue about it, the acknowledgement, we can't really do this for you, sorry. Some answers to tell my children as they question the grandparent connection and lack of. Something solid to hold on to. How do you explain to children, yes your grandma takes that cousin away on a holiday/ night away but can’t let you sleep over. Grandma can travel to a 5 hour round trip to visit your cousins but not the hour round trip to see you?! Your grandparents left your birthday present at mummy’s work but could not give it to you in real life ummm. These are the hard questions to answer a 3yr old. The hurt this 30ishyr old feels thinking about it is insurmountable.........


The continuing devision that autism brings to our small world

Highs and Lows

This week has been filled with highs and lows in so many areas. Lets start  and hope it all makes sense to those outside my brain!
We have received our first ever "average" range in a speech assessment from the youngest Elijah, this in itself is amazing, the speechie that did the assessment I am pleased to report understood that I wanted to more than high 5 her, she understood my relief and my flood of emotions that poured out when I saw her. Elijah at this time is oblivious to this piece of paper that I simultaneously want to frame and hide away.

Our house this week has been filled with the plague or perhaps just a weird gastro type bug, all but myself went down with this one (I did spend allot of time hiding away and cleaning with antibacterial sprays!) this is amazing for me, I am usually the first down and last up stupid lupus. The kids by now have pretty much bounced back, shame I cant say the same for the poor husband dozing on the couch.....

We have had the high of hearing that our oldest is on the school radar for transitioning to a satellite class, which is huge news, I guess it is what we have been hoping would happen for about a year now.
The low this week was hearing the afternoon following news of him being a possible transfer is he had one of his worst school days for the year..........well you win some you lose some?!?
Caiden is at a stage we feel he is the most settled and doing so well academically that part of me wants to move him to a "big school" and the other part of me wants to have a settled low working life style. It seems like a good idea now to move him but it also is a terrible idea he is doing great!

Lilliana this week had her interview at "THE SCHOOL" following this interview and being able to view the school I am more convinced than ever that it is "THE ONE!" and the one for all three kids. Lilliana did well, she had a few moments, but for her I must say I felt she did spectacular, no melt downs good verbalizing, a little shy at times but hey it was a man she had not met, suddenly she was in a big loud school that has about 500 kids, she really did fabulously. The school went beyond anything I had envisaged, the layout was nothing I had ever seen or thought of, but it was amazing. The low of it is the school has received more applications than it has positions for....so we now wait initially for first round offers, then we hold on for the second round. I am not good at waiting!

I have been privileged the last few weeks to try out a different position at my work, to feel inspired again, to have found a new direction. Something I feel challenged by in a good way, less frustration, allot more positive. At this stage it really has been a breath of fresh air, when things go back to where they were at the end of next week I will miss them, but at least I feel I now know where to head....

This week has been filled with life good and bad for my family, but the good has left my inspired and hanging for more, the bad has reminded me of life.......nothing we cannot face just simply life and how to be present

Fitting it all in

Fitting it all in

In this parenting world where life is full of appointments and there are multiple children, comes the question of needs. Three children all with such individual needs and personalities, how as parents do we give all of the children what they require?

As parents we strive hard to fill the core needs, feeding, bathing, so on as parents of kids with additional needs these jobs become harder, feeding can be fraught with issues, bath time another mine field. Then we add on the additional needs and what the requirements are. For us currently it is ensuring that all appointments are logged and kept, it is fitting in all of the recommended activities, keeping up with the mountains of paperwork that this all generates, creating systems and further structure. Working hard at keeping up with social activates to grow new skills and maintain old ones.

Often we also have to make decisions on what systems best suits the individual need.

 Making core decisions on what type of treatment we will seek. How we can maintain this treatment format/style in our lives. These decisions keep multiplying. Now with a third child travelling down the pathway we pause to look at his needs and requirements for right now, and format a plan. This plan has to fit with two other plans.

Somewhere in this as I parent I have to work my plan around all of this chaos, my work schedule, (which is as flexible as a brick) and currently I am pushing harder than before for a social life, a life outside my work and my family, something to help keep me sane. Then the other parent also to find a happy medium to fit in parenting and paid employment, and some semblance of a social life.

At present my mind is stuck on the idea of who’s need is greater this thought simply terrifies me. How can I place one Child's need over another, how do I rank this. There is no simple guide on how to do this. People I talk to the standard response is “do as much as you can” “only do what you are capable of”. I often feel I am not capable of any of this, how do I co ordinate services for three children, how do I ensure I work enough to pay the bills, yet get enough actual “real” time with my children. I don’t want to be the mum that just did therapy, or the mum who was so stressed, or simply the working mum.

For the most part I enjoy being with my children, I love they have such individual personalities, they are a joy to spend time with, but there is the flip side, the meltdowns to poor coping skills that side of it not as much on the enjoyment front! To be honest it challenges me it challenges my patience and my skills, my mothering skills and my mental health skills at times.

in our household we have the added pressure of which parents's work commitments rank above the other, in our houslhold we are both trying to work and parent, which is further pressure as there is no clear lines.

IT feels like we are constantly trying to fit so much in, not just into our lives but the things we hold in our heads. As parents we often wonder at how much the heart can hold, as a mother of four children I am often suprised how great our capacity for love is. I wish that my capacity to do it all was bigger!

For now we are swimming (or drowning, depending on the day) along with the "just do as much as you can" and attempting to push the guilt further away.

My beautiful children......

Calling it

Part of our weekend we spent some time at home and on the Sunday attempted the family fun day, yes attempted.
We took three children, somewhat prepared (we attempt talking them through things before we get places, but sometimes when you don't know yourself exact details its really hard to prepare a child who remembers everything) out for some family fun time, I guess that was the plan.
Of course plans don't always come off, and this time was no exception.
As we walked in the first thing was managing Elijah at the police car, they had it open and a police man was standing behind it chatting to some people. Mick's first comment "make sure there are no keys in there" of course Eli had dived into the drivers seat and was naturally touching all the buttons and adjusting the mirrors for the police. (He is really helpful like that). The other two kids jump in all is going as well as can be till he has worked out where the handbrake is, quickly we wrap up and move them out that time is up. On to the play area where we stayed for a little bit without incident.
Moving into the stage area Caiden starts hand holding allot tighter and actually verbalises "its too loud mum" we move away. (Super proud he can verbalise when something is setting him off). We try the jumping castle which ends with Eli's threats to deflate it buy unplugging it (he has worked out it was run by power, from a generator, smart child).
I guess by this stage of varying negotiations and pacification's I am starting to feel the pressure in an out setting, Mick is showing some wear, when suddenly Lilly melts into a puddle, she has turned non verbal and is now on my hip. That moment Michael and I decide, we have to call it, it has become too much managing and micro managing. It is simply time to go home. We are struggling to be out we are watching three children disintegrate in front of us at something that was meant to be fun. I hate calling it especially on a child related thing, I sometimes feel I am cutting them off, that we are not giving them "normal" child experiences. We work so hard on social integration, but then as a parent we have to work out the cost. Sometimes its the cost to the child they have been thrown into something too loud, too smelly (the animal petting zoo), to vivid in colour, sometimes I have no idea what it is. On most occasions its also the cost to the parents, at what point have we stretched ourselves too thin? how much can we stand by and watch our children melt into puddles?
Sometimes we call it at the right time for us, as we cannot contain them anymore, safety is becoming a concern (they also outnumber us!) sometimes we call it too late and we as parents are the puddle of emotion and guilt.
In this instance we called it at the right moment, both parents walked out with the three children and were able to talk a bit about it, but perhaps we made the bad choice of taking them of not leaving earlier, how hard are we meant to persist? This time we had some supportive parents around the field, but they are parents dealing with their own children, and not all of them walked out smiling.
When did making a decision become so hard and fraught with guilt......

Hold hope high

Last night as I check on the kids before I went to be I had a moment of gushing, looking at the sweet sleeping forms of my children, that moment I realise how wonderful it is to simply be in their presence.

I carefully took Lilly’s cowgirl hat and bracelets off her (which of course promptly woke her) to soothe her with a hug. She is a child that clings like a koala, which I have always loved, the way she holds on tight for comfort, the way she is comforted by being held tightly.

To the room of Elijah, with him laying across his bed easily moved in his deep sleep, surrounded by lots of toys, mainly stuffed dogs?!

To Caiden’s  room where he looked to be in the same position he was left in. Sleeping so calmly, so sweet and peaceful.

To look at these children asleep it’s hard to tell what the daylight holds for them. It’s hard to think anything but loving thoughts to see them sleeping.

 At present we are hopeful of Lilliana getting into a school we currently feel is right for her, our first big step after lodging the paperwork is done we have secure an interview!! Here starts the hope. We are particularly keen on this school as I feel it has potential to be THE school I could send all three of my children too. (How far can I fall from this dream!)

To send all of my children to school together is something I started to think may never occur, then even with all kids having an actual or provisional diagnosis of autism didn’t mean that they would all be able to attend school together. Mainly due to the children’s varying needs and the varying delay. Mixed in of course with the varying issues in securing placement and support for children within schools. Sadly with children with a diagnosis they often do not get placement at the local school, even if it is one that has the required support levels. (Dept of Education really is another rant!)

Right now I have hope! I have a moment of comfort that the school wise there may be some place just right for Lilliana, with the thought that it may end up being great for all three children. Part of me is reluctant to get excited, another part of me has already thought about buying uniforms for all of the children. The moment we had the interview booked I felt lighter, I felt so positive about school, school for my Lilly.

Schooling represents so many hurdles, it’s not just the academic side, it’s the social and emotional. Ensuring they have the correct “school fit” can set them up to view school as a positive, it is somewhere the want to be rather than it being somewhere they have to go to. The fear that they will be bullied for being so different, the fear that they will not fit in. I like most other parents want my kids to do well in school but, for us doing well means something else. I want Lilliana to be comfortable in the school, I want Lillian to be accepted when she gives them the full Lilly treatment. I want her to just be happy Lilliana, not the subdued child she becomes when she is not coping. I really have a huge wish list for school and academic at this stage is really far down my wish list, I have that hippy thing that it will come when she is ready. I want a school that can understand this.

Then the practical application for three children this close in age to be at the same school simply makes sense for transporting, social activities, and support. Also for them for comfort, it is a comfort to have someone so familiar to you in the playground. I guess also that image that they protect one another is also strong.

Part of this inspiration is in Lilliana, the progress she has made in the last few months amazes me, it inspired hope that she will cope at school (we still have her home for 6 months). She is for the most part more settled, she is better than before at regulating her mood, she is getting better for verbalising some emotions. The big thing is as a parent we have plans, we can see areas of need and we are working towards it. She by no stretch of the imagination is perfect, nor is life simple, but for all the work we are doing as is all of her "workers" there is improvement!

For now I am hopeful, I am hopeful for schooling....(its my current mantra)

masking

 Today as I was driving back from one meeting to head into my temporary role in management, I received a phone call that stopped me.

Staff from the hospital had flagged our file as sensitive, we were booked in for a third CATS assessment in as many years and two in one year! (yay us).

That simple moment of recognition that something may not be ok, there may be stress around this, simply crumbled me. It also sunk in that this was a booked appointment, it was all very real. I had told a few people of this appointment and the standard reaction was “well that is good you are getting it sorted out”. I wanted acknowledgement that it was actually devastating it’s the moment the provisional becomes actual, it’s that moment of deflation. For us having had this assessment for two children, a third is no less devastating, in some ways with Lilliana’s so fresh in my mind I find it harder. He is also my baby.

I sat in the work car pulled to the side of the road crying, life had slapped me in the face.

I tided up and the proceeded to go back to work, where I dealt with work things in a manner that I felt was professional. I carried on with my day with a smile on my face and continued along as required.

I did not stop or let my guard down, I made decisions that were work based and with no emotional input. I wore my mask of a working mother, the mask of “everything is fine”.

This mask is worn so often that sometimes I find myself shocked when I can take it off how real and huge that pain is, the pain I struggle to confront. Sometimes that mask is hard to wear and I can feel it slide a bit, I know I have to compose myself for fear of the flood of emotions that are tucked away.

Life as a working mother I have always for some reason felt that I should not complain about either side of the fence, to be a working mother for me and many others is to be riddled with guilt. Daily guilt. Guilt that I am not at home with my children at all moments, guilt that I am not at work at all moments. Guilt that I can only divide myself so far. The guilt  is everywhere. There is a constant battle for attention from work and children, and in my current world the further time constraint of appointments and professional meetings. There is also the hours needed following appointments to do homework and build our therapies into our life. Three kids all requiring various therapies our homework pile is big. We fit this into our life or really we have built our life around this, autism rules our household.

The things that is starting to bug me is not many people really know how autism rules my household and life, I guess this is part of my blogging, I am ultimately unmasking myself..............

Survival

In my life sometimes we gauge the day by how well we survived it. Sometimes by the amount of energy left after the bedding hour, other times the bedding hour is an indicator of how the day went.

As parents we are constantly gauging and assessing moods and outcomes, potentials for disaster and meltdowns, and even just simply current coping skill sets, for both child and parent.

We have structure and routine, it’s how we survive and get out the door to the morning onslaught be it work or appointments.

As the adults in the house we have a plan for getting everyone through the breakfasts and the dressings and the hair, getting the bags together to make it out the door for an 8am start. When I think about it I often feel like I have done a full day’s work just to get out the door. Getting three kids dressed and fed is no mean feat, add in the autism and it is game on.

I have to remember how to lay out the breakfast utensils for each individual Childs wishes. I have to remember which child prefers the weet bix crunchy and which soggy. Some mornings on a bad day I have to remember that I need to turn all the cornflakes over in the bowl as they always fall out upside down (WHO KNEW!!).

Then there is the getting the children dressed moments, which child can independently do which part (and will do it willingly that day), not to mention the specific clothing requirements. Tag out, socks inside out so the scratchy bits don’t touch the toes , shoes lined up just so, otherwise they are the wrong shoes, this goes on.

In the midst of all this is the showering, breakfasting and dressing for work for myself and the husband. The morning is crazy.

Some days I wake up and just simply do what needs to be done, other days it feels like my own personal battle zone.

Of course by now this is the simpler and edited version, (if you can imagine) we do actually do prep in the evenings making lunches, checking bags etc.

Depending on who is on parenting shift the assessing continues throughout the day getting to and from appointments and special group settings, attempting to avoid and decrease the intensity of a meltdown.

 As a parent we always are on guard.

This on guard feeling is more than double in settings that we and the children are unfamiliar with, this work load for us as parents is highly increased.

Often times we look unsociable as we are trying to reassure children of things and maintain safety. Going out is not really that simple, we do it when we as parents feel our armour is at its strongest, we do it to benefit the children, we sometimes do it as we are out of food! But it takes strength. Sometimes this strength is depleted from the daily survival.

When we do make it out at our peak moments, we are working hard to survive to walk away knowing we have all three children safe and sound. We have minimised or avoided meltdowns, we have prepared them for changes and social settings that they are unfamiliar with.

These peak moments we strive for, sometimes they pay off and the rewards are huge, we can be rewarded with a connection, excitement, unseen social skills, and sometimes (teachers will be proud) a light bulb moment in our children a moment of understanding at museums (that’s how big a dinosaur is, oh it’s just bones, well no I can’t really ride that!).

sometimes they fail and the fall out is huge, the meltdowns are indescribable, the anxiety attack is horrific for child and parent alike, stressed parents at the end of the tether. Sometimes the after effects are felt for weeks to come poor sleep due to fear, poor coping and concentration and in our eldest he shuts down and to get him back could be a day or a few weeks.

This is our version of survival, and hopefully an understanding of why we may be so anti social!

The air of excitement (mothers day!)

The air of excitement

At home at the moment is a building of excitement and anticipation. In our household this can change swiftly into anxiety and poor coping. For the moment I am focused on the excitement!

The excitement is mother’s day (see why I am excited!) The kids this year have latched on to the idea of mothers day it’s simply a birthday for mothers, a GIANT one.

 This year marks my first tangle with the mother’s day stall.(Wish me well!, have already been told to expect a “groovy” necklace The youngest two had a mother’s day stall at their day care. Since purchasing things from the stall I have been presented with packaged goods and of course by Lilliana told what is inside. Elijah has told me simply “its a present for you mum”.

There are gifts galore the youngest two have made something at preschool and Caiden has also made something at school.

The presents at the moment are a focus.

As yet none of these have been opened.

It’s amazing to watch them all excited over something and have an understanding about why they are excited. To have all three of my children grasping at the same thing at the same time is HUGE progress for us. It shows how they are participating and understanding the outside world. This is a glimpse of reality, and yes I am high on it!

This year due to the excitement we made a decision let’s keep it at a level that (hopefully) the children can manage. Let make it a home day.

This year’s plans are a sleep in for mum, and in the evening a pizza pyjama party watching Gnomeo and Juliet. To simply hang in our comfort zone doing something they are all comfortable with. With their daily people.

The mish mash of mothers

The mish mash of mothers

Mothers day is for mothers, the mother you are the mother you have/had and the mothers in your life.

Recently it was fed back to my from a woman that I greatly admire, that she felt my parenting style was simply beautiful. To receive this complement from a woman I greatly admire really blew me away. When she asked about my mother that when I hesitated, the ‘Oh’ that escaped her lips said it all. We went on to discuss my role models and some of my youth. She took the time to listen and at the end of it all simply asked “so how did you learn this?”.

We spoke about parenting and mothering from feel I wanted my children to feel different to me. I wanted to always feel differently as a child, I watched women around me I at times had mother envy.

I have been lucky enough to have some wonderful role models around me, even still. I work with women who have raised their children and look at the relationships with their grown children and aspire to this. I want to have relationships with my children after they have left home, good honest relationships.

With my children and their additional needs it has been raised about the idea of them leaving home, in a hopeful moment I simply think it will simply be later than average, and they will need to be close by to help them. As a parent I am sure I will be part of my adult children’s transition into the community.

In less hopeful moments I fear that they will live with us forever, or the worst case scenario, they will require “Care”.

No matter how it goes and which path each of them take I will proudly walk with them holding their hand so proud to be their mother.

My mothering is something by no means perfect, it is something I attempt to work on every day. It is something I think about frequently and something I often “feel” my way through. I am lucky to live in an age where advice is available at any hour, the internet and phones are a magical tool that often has given comfort or sound words without judgement.

Being a mother is a joy, a joy that I am privileged to have in my life. The pain that leaks out of my eyes is there only out of love and concern for my beautiful children.

This mother’s day the first of comprehension I take such joy out of my children, the progress made, the laughter they bring and in all the ways they enrich my life.

The pain threshold

The pain threshold

The second you stop and acknowledge that something is painful. Be it physical pain or emotional pain, it’s that moment you realise it and the power it holds.

The moment that crushing moment of outsider acknowledgement, when someone outside gives a nod of sympathy in my direction, it’s that moment it all falls apart. What has been building gushes out in torrents.

Sadly it is physical pain I find the easiest to deal with, having Lupus there is generally daily physical pain in varying formats.

The pain that most concerns me and is always fuelling me is the pain I see in my children’s eyes.

Elijah and his moments of anxiety, sometimes in particular when he is around large groups, I see the fear, sometimes in his room by the glow of his night light I see the fear. Sometimes his fear looks like an asthma attack, in a 3yr old this pain is terrifying. Knowing that he is struggling not always being able to predict and assist this is a pain I feel most days.

 At present we go through his daily schedule, lists of people, places and try and  see what will provoke this, what we can do to minimise his concerns and even attempt to plan for what we do in case of. We regularly have to work out “worst case scenario” will he land back in hospital? If so how do we manage that if we are out, What if it’s not our hospital? And so on. Attempting to predict these moments is soul destroying. It’s another complicated factor in “getting out the door”. This is just for Elijah and just for his anxiety, then we have to plan for his behaviour! oh and Caiden and Lilliana's needs.

The power of pain and fear in our lives is large. The pain of watching your children struggling in certain environments, with particular people, it sometimes stops us having a life. Or at least the life that we had envisioned, with the people we had anticipated.

For us as a family it is simpler to be just us than have to explain all this. Even out doing things when we feel prepared it is simpler handing off to the other parent who is aware of what needs to be done and how it is best done for that child.

Sometimes it is simply this pain that isolates us, a pain we often feel we can’t share, or sometimes don’t know how to share. Where do I begin to tell you what my life really is, what true pain it can hold......

the parenting journey this far....

Years ago we started on the journey of having children, this journey has really been one of love and loss and laughter and tears.

This journey opened my eyes to parts of parenting and love that I had never dared to imagine, highs that are unnerving and lows that took my breath away.

Recently our journey has been marked  by moments that I know will haunt me for many years, moments that have required decisions that seem large and immediate, such intimidating decisions.

I am a mother to four children, three children live with us in our home and our other daughter lives in heaven and our hearts.

I guess our journey to parenthood starts right there with our heart baby, Isabella.

Her name is sometimes a waterfall of tears other moments a lump in my throat. Isabella this year would have turned 8. This beautiful baby girl we held for the shortest moment in time. She was born into our lives too early, but not a moment with her would i change but the one i had to let her go. Our journey to parenthood started with love and grief.

Our next venture into this was in the form of my sweet 6 year old Caiden, he is truly an innocent in this world. He came to us and brought love and light that amazed me, that first touch of his skin, meeting him for this first time really was simply magic, relief and love and happiness merged.

When Caiden was not quite two we had a beautiful baby girl Lilliana, she entered our world and again shook our core it was amazing to know that love has no capacity I could not have imagined that I could be so full until 12 months later we welcomed my baby Elijah now 3, he was the baby we were meant to have, not planned, not expected, not like any other he filled our family and completed it.

WE threw ourselves into parenting both of us were present for most things sharing the paid and parental workload.

I guess this is that point of honesty, parenting was hard, at times really hard, partly we brushed this aside thinking it was due to inexperience, and many other such thoughts.

We questioned many professionals, we questioned our own judgement and at times went against that gut instinct.

Wrapping it neatly into a little bow we now have two children with a diagnosis of Autism spectrum disorder and our baby has a provisional diagnosis of Autism spectrum disorder. We have all stages of delay from Caiden with a moderate delay, to Lilliana with a mild delay and to Elijah who is not delayed, and “appears rather bright”.

The journey to this neat little package of diagnosis has been heartbreaking and at times simply overwhelming. We have struggled to explain to people the reasons why we do things the way we do them, we have struggled to understand ourselves how we do the things we do sometimes shutting our own emotions off and moving through various motions in auto pilot so as not to “feel” what I can only describe as the gutting reality that is our life. The whirlwind of services, appointments, paperwork and decisions still dominates our daily lives. There are moments that I allow the grief of diagnosis to wash over me, the grief of struggling harder to make a connection a lasting connection with my child, sometimes this grief allows the highs that are connected with struggle a light shining in a darkened room direct eye contact, a child melting into a cuddle, a connectedness.

I hold fast to thses moments of light, they allow me to focus on the possibility of happiness, they allow me to see the potential and the reason why we try so hard.

How the west was won

Today this title has simply plagued me, listening as I worked away to ABC conversation with Dr Tony Attwood, that way he spoke about needing to sell a diagnosis to some people this struck a chord. The explanation of our decisions our  current practices and essentially our daily life.

Lilliana was diagnosed officially on the 5^th of March as yet I have not had an actual conversation with the majority of my family, their support and acknowledgments over the past years has underwhelmed me. In the past years again the distance has grown, and the gap is vast. This gap is something that I think and reflect on frequently but more so of late as my youngest questions “where is my nanna?” “what is a Nanna?” my baby wants some answers, the older children are easily refocused on this, but Eli is not to be led down another path.

His questions have become a part of a new fixation, and yet at the same time they have fuelled mine and my head screams well where is your Nanna or the equivalent.

So far the few conversations around this diagnosis have been measured conversations, all but one that moment I will remember as the crack, lucky for me it was in a room filled with parents of children with additional needs, parents that knew all too well that pain, the loss and the fear associated with diagnosis. That parents in that room will all have walked out with different moments they held from it, from that moment I took love and support pure and simple and understanding that I was not alone in this, I remember the tears in people’s eyes and the looks. It was a moment I was free to be me and let people in.

Lilliana’s diagnosis was so rapidly followed up with a provisional diagnosis for our youngest, some of that time is simply a blur of emotions.

Our west is not yet won, there are conversations still to be had, there is the difficulty of “selling” this to people that see these children for such limited amounts of time. I also wonder if the West will ever be won, how many times do these conversations need to be had, at present we have just begun the conversation of diagnosis with the dept of Education, this is one conversations that makes me shudder. This conversation and subsequent paperwork is the beginning of Lilliana’s schooling and will set her up for the future of her schooling life. This thought can paralyse me at times, the idea that the decisions we make now based on our current finances, our working hours, our address all have the power to make this decision a very good or a very bad decision. These discussions and subsequent paperwork hold so much power for  Lilliana.

It just feels like there is always some form of battle going on, the battle for acceptance, support and above all else the battle for my children to have lives that are enriching.