Snap & Patience

It’s a bit of a tradition to play some cards or board games during the summer holidays and especially on Christmas day. I did, but that is not what this post is about.

While I was at the beach last week, I was casually sweeping the floor – the sand these kids trail through the place is phenomenal! As I went about my task I heard a very loud, distinct and unusual pop sound  from my back. I froze. My friend who was in the same room, was looking for where the noise had come from. She thought it sounded electrical, but I knew it was mechanical.

Almost 3 years ago I had major spinal surgery where I had two titanium rods screwed into either side of my spine from my shoulder blades (T8) to my sacral spine (S1) and into my hips. I wrote about this experience in more detail here.

I knew something had happened to my ‘hardware’. I was afraid to move, but as I attempted some small movements, I found that I could. Apart from the initial sudden pain, I could move without much pain at all. My mind was racing, trying to figure out what might be going on inside my body.

My initial thought was that I had popped a screw. This can happen when there is too much pressure on the area, where the fusion has failed or when there may be deterioration of the bone the screw is in.

That night I could feel things moving around. Every time I moved, my back would creak & groan like an old barn door. That is a weird feeling, let me tell you.

The next day, as planned I packed the kids up and headed home. I knew I would need to get an xray, so had to book in with my doctor. I managed to get a cancellation on the very last appointment of the day, on the last day she was in before taking her holidays. I’m lucky to have a really great GP.  Still not much pain, but I’m walking stiffly and the groaning and grinding coming from my back continued.

The following day I spent all morning trying to find someone to look after the kids so I could get in for the xray. With many friends away on holidays, my support network was a bit thin on the ground. I finally gave in and asked my poor aged parents come come over to watch the boys – something I’m trying not to do. The boys love them to death and they love them right back, but they are elderly now and having a whirling dervish (L who is about to turn 6 and has autism & an intellectual impairment) a 2 year old (N – say no more!) and a future heavy weight champion (J – 18m) – well, let’s just say it can be quite a draining experience.

I head off for my xray and I can see by the look on the sonographer’s face, that apart from having a lot of hardware, there is something going on. She suggested I come and have a look – and there’s the snap part of the story. Both my rods have snapped.

If Frieda can do it, so can I!

If Frieda can do it, so can I!

Here comes the patience. I ring my surgeon’s clinic, but…it’s the summer holidays and he is on holidays in another part of the world. He will be back on the 15th. I’ve been talking to his clinical nurse who is one of those super efficient, dynamic, right hand woman kind of people. I feel a bit better every time I talk to her. She is also on holidays and has been ringing me daily to check that I am OK. Instructions are to wait, do NOTHING. Do not lift, do NO housework, take it easy. Did I mention I have three little children in my care? If anything changes pain-wise, I need to get me to emergency asap.

I'm doing my bit!

I’m doing my bit!

So apart from shedding some tears, losing my cool regularly, feeling a bit depressed about my lot in life and feeling overwhelmed by what it might all mean – more surgery, massive amounts of support and help needed on a 24 hour basis, having to tell everyone (hate that and yet…here I am dear reader), dealing with the bureaucracy that is child protection etc, I am trying to stay positive, make a plan and recruit some help.

In general, I’m good until I’m not good – like today when L made a diabolical smeary mess all over his room, bed, carpet and himself. That’s not something you can ring and friend and say, drop everything, get over here and clean this shit up – literally! That’s when the going gets tough. Sorry for sharing that – there’s somethings you really shouldn’t share and that’s probably one of them, but it’s late and it’s my reality.

So, patience, people. I’m working on it. I’m also working on my optimism. That is all.

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I KNEW it!

This may not be everybody’s cup of tea, but for anyone who is tired, angry and frustrated at government cuts to services like disability, education, health and to the non-profit organisations that contribute to supporting the people in our communities who are most vulnerable, then this..my friends is like a cup of steaming hot Lady Grey on a hot afternoon (that’s a good thing in case you weren’t sure).

My argument has always been that PEOPLE matter more than NUMBERS. That being said, of course I understand that in its simplest form, we need to live according to our means. However, when it comes to the more complex economics theories and arguments, well let’s just say that’s not my strong suit.

Over at the London School of Economics, it’s just the opposite. So what a surprise to find myself on their blog, reading an article that resonated so strongly with me and backed up my people vs numbers argument.

This is readable, understandable and sensible – please have a look at what Professor Richard Layard & Paul Krugman have written in his Manifesto For Economic Sense. You will not be disappointed.

Last week our slash & burn state government provided a list of ‘savings’ made by the Education Department. Here are some highlights:

  • The Pyjama Foundation loses $100k. This is one of the most wonderful & cost efficient supports to children in care with volunteers helping them weekly with literacy & numeracy. You can read here our experience with the Pyjama Foundation.
  • Triple P Parenting loses $291k – a ‘best practice’/ made in Queensland parenting program that has helped a phenomenal amount of parents & kids. Here is my experience with Triple P.
  • Vision Australia loses $200k – these are therapists who provide incredible support for kids in schools with low or no vision. It was Vision Australia who helped guide me in the very early days of caring for my little boy with delayed visual maturation and cortical vision impairment. They still help him by providing targeted support to his teacher at his special school.

These are just a few from a list of 43 ‘savings’.

Now, why should I be so upset? As a foster carer I care for the children whose parents need to be learning about parenting from Triple P. In caring for a child with disabilities, a child whose needs by law, should be paramount in all decision making, the end result is that he will have less and less support available to him.
Meanwhile of course the child protection system is under unbelievable pressure with workers losing their jobs or not being replaced. Only one in ten matters brought to the attention of the department are investigated because there is not enough staff and resourcing.

We are now up to 14,000 public servants whose jobs have been cut. That is not a typo.

image credit: brisbanetimes.com

I am furious that nobody in our government has the spine to speak out or to do the right thing. Don’t get me started on the NDIS! It’s shameful and a vile political game where the kids and the vulnerable lose.

The Goalposts Just Shifted

Day 23: Autism Awareness Blogathon

I know that as a parent, you spend most of your time dealing with the practical aspects of parenting. When your child has autism we do the same thing, but we don’t have the assurance of the future that you do with a neurotypical child. We don’t know what our/their future will look like. So we focus on the day to day and try not to get disappointed with ourselves for dreaming about this mystical, clouded  idea of a future hoping it will be full of happy, meaningful independence. Because, seriously, we have NO idea what it will actually look like.

On the weekend I attended a really fantastic conference session presented by Michael McDowell of the Childhood Development Network – one of our local private multi-disciplinary clinics here in Brisbane (Australia). And now I know why this Paediatrician has had his books closed for some time! Here’s the rundown from the session:

Our goalposts as parents need to be on our child’s transition to adult life. If we frame what we do as our children are growing with that pivotal point in mind, then we can effect great change. Most importantly our decisions can be made with this child & family focused outcome in mind rather than what the therapists/teachers/specialists etc. might think, however good their intentions may be.

There are four main areas to consider:

  1. Mental health and happiness
  2. Social participation
  3. Vocation/meaningful daytime activities
  4. Independence to the greatest degree possible

Using these four categories, look at constructing a plan which focuses on the next 6-12 months but with the bigger goal of transitioning into adulthood with all four areas optimised always in mind.

McDowell suggests developing a ‘team’ drawn from our community. Look to your extended family, work, sport and social groups, teachers, kids in your child’s class and within the broader school. Identify who you might like to include in your child’s team then look at how you might bring them into the team.

Develop a simple profile of your child remembering that you are controlling the message and the information you are sharing about your child. The profile should include the positives – what your child is good at, likes and what is likeable about them; the difficulties – what is unexpected or hard for your child and how they adapt; and the reasons it may be difficult for your family, the challenges you face in caring for your child.

Communication needs to be parent driven, keeping the team informed, bringing them together to share ideas and celebrate successes with your family. The team can be fluid with roles and goals delegated appropriately, but are all committed to working with your family to assist you in achieving the best possible outcomes for your child.

It’s important to keep in mind that we want our children to enjoy being themselves. Their positive self awareness, how they think about and manage themselves as adults, stems from feeling safe and loved within their family and wider community and this in turn builds resilience.

I don’t feel like I’ve really captured the spirit in which this information was delivered. It was actually quite empowering whereas what I’ve written above sounds a bit clunky. I really like the idea of planning with the end goal in mind and I feel like I already have the makings of a ‘team’ – people who love and care about my child. I know I need these people in my life whether I formalise their roles or not. I had to call on quite a few of them just to be able to attend the conference (3 different babysitters on each of the two days!). 

One of the most important messages this guy had was to focus on the family as a whole, not just the child. Our children need their families to be strong and happy, not worn out parental wrecks who are angry or divorced and sullen, resentful siblings. So go now, get off the computer and give your partner a warm cuddle and tell them that you love them.