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

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......

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)

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.