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.