Looking after me...

It's a well known fact of parenthood that there is little time for mum. Life is full looking after other people. When those people are little then it's very hands on. Dressing them, feeding them, cleaning them, cuddling them, playing with them, reading to them etc etc. My eldest child is 4.5yrs old so what lies beyond these early years is still an unknown to me. It's not often that I get a moment to myself. It's not often I get to complete a whole task uninterrupted. It's hard to prioritise myself, giving myself time to refresh which enables me to be a better wife, mother and person.

So if it is hard to find time for 'me' time with 3 children, finding time for me with a child with additional needs is next to impossible. Life has become a lot busier with additional medical appointments. We have speech therapy, psychologist visits, kids gym one morning per week, learning support playgroup another morning. Add to this other assessments and reviews which take place (especially in the early days of discovering a developmental disorder) the calendar fills up quickly. I find when I am physically stretched I get quite edgey, impatient and stressed.

I have never been a person prone to depression. Whether its the makeup of my personality or biological factors, I haven't experienced long deep periods of depression. There are times I felt I have become close. I know the symptoms. I've seen others close to me walk through these dark times. I know when things within myself are changing. My perspective gets a little foggy. I get increasingly negative about myself and my abilities. My patience wears very thin. My eating habits change. I start to binge and eat for emotion. I get lazy. It gets harder and harder to get out of bed. Exercise falls right off the agenda. I constantly feel sad. Tears well easily at all times of the day.

All these symptoms have been emerging in my life the last couple of weeks. I don't really want to go into depression but in some ways I do. I feel like if I let myself sink, it'll be some sort of escape. Somehow I can hide from the realities of life. Somehow it'll all go away. It is a tug-o-war between this part of my brain and the rational side. The part that says it won't work. It'll make things worse for myself and my family. There are better ways of coping than this. I don't want to put on all the weight that I have lost over the last many months.

It's been a rollercoaster week working through some of these emotions. I have forced myself to the gym twice and it had an instantaneous effect. My mood immediately lifted, I suddenly had some energy and motivation ( I actually came home and mopped the floor!!) I am still feeling flat, but not in the 'danger zone'. So exercise needs to be part of 'me' time. It has to be part of my strategy to swim and not sink in all of this. It gives me a clearer head to process thought and emotion. And it gives me some time out.

I figure working through depressive emotions are going to be part of the course of learning to live with a child with ASD. There is no quick fix. And the truth of it - it is sad. It is heart wrenching. There is a sense of being robbed or of E being robbed. There is a sense of injustice not for me but for him. It's ok to feel these things. I just need to work out the most healthy way of dealing with emotions.

I was reminded of God's goodness this week. His hand. His ways. His timing. His love. His intricate knowledge of whom he has created. His firm grip on the shape of their lives. His promise of fulfillment and restoration.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you," declares the LORD, "and will bring you back from captivity. I will gather you from all the nations and places where I have banished you," declares the LORD, "and will bring you back to the place from which I carried you into exile."

~Jeremiah 29:11-14

Playgroups of a different kind

Today I went to a learning support playgroup. It is run by a group called Lifestart. It was a very different experience to any other playgroup/ mother's group I have had contact with. The set up was pretty normal... free play activities, morning tea, outdoor activities, structured song, dancing and story time. But it had a very different feel about it.

In some ways it felt surreal. There were about 20 kids, 20 mums/dads, 3 staff and about 3 volunteers. So the environment was very active. Here I was in a room filled with children with one learning disability or another. There were a lot of tears, tantrums, screaming and uncontrolled actions. If I am completely honest, it felt a little strange, awkward and confronting. This is still a whole new world to me. I am not used to seeing such an abundance of children who have struggled in one way or another with childhood development.

And yet, I felt so at home. The place had a warmth about it that I have not encountered before. The staff were incredibly kind, welcoming and wanting to know us as individuals. But it wasn't just the staff. The parents were welcoming. Some of them even introduced themselves!! Now I know this doesn't seem like a big deal, but it is unusual (in my experience) for mum's to introduce themselves - they might smile at you but very few go out of their way to make you feel welcome.

It helped that I connected with another mother who had only come once before to the group and her son (aged 4) has also only recently been diagnosed with ASD. It was nice to share some similar experiences and struggles.

The biggest difference I noted: people's guards were down. There were few or no barriers. There was a softness in the room. Understanding in their eyes. Compassion in their hearts. This is the place where your child can scream, roll around, hit their head on the floor and nobody blinks. Nobody stares and thinks 'what is wrong with you and your child?' No one judges your parenting because everyone has walked in similar shoes. I felt E and I were accepted. Maybe that's one the blessings of walking this road. Maybe as we struggle, cry, weep for our child - we care less about what others think and more about supporting others who share a similar anguish.

As I journey, I am conscious of seeing the blessings. Although, this is not a road I choose to walk I believe God has chosen it for me. There will be flowers along the way, blooms which I would otherwise not behold. I believe this is one of them. These people are real. Vulnerable. Warm. Caring. Maybe it's partly because you don't have to pretend that your life is perfect or near enough to it. Our children don't know how to pretend. They don't put on their best behaviour. So we give up the fight of saying 'the nice things'. Life itself already feels like a fight. It takes energy to put on facade. So when people ask me how I am, I rarely say 'good' anymore. Cause I'm not.

But today, I am thankful that I'm not 'good'. What warmth and beauty God has brought my way.

Our journey so far...

Our journey into the world of autism is only about 2months young. However, I suppose we have been living with the reality of it for a couple of years without knowing it. E was born Feb 2008. It was a normal birth and delivery (albeit at lightening speed!!) Life with E for his first year of life seemed pretty typical on the whole. Perhaps there were some early warning signs, but when viewed in isolation, they didn't seem like anything to worry about. He was a VERY unsettled baby. I could never get into a feeding/sleeping routine. He was real hard work up until at least 6months of age. Of course, now I wonder if autism had anything to do with it.

On the whole, E seemed like a pretty 'normal' baby. We started having some behaviour issues with him probably around 18mths of age. However, it all seemed in the normal bounds of the onset of 'terrible twos'. We did note some things early on that were different about E, but we put them down to personality:

• although he was interactive and smiley, there was an emotional distance as a baby. Most of my extended family didn't feel like they got to 'know' E until well into his second year.
• he didn't do 'finger' food until well after one year old. I had to spoon feed him for a long time.
• he wouldn't chew food until quite late either. He didn't like 'bits'.
• he didn't put things in his mouth as a babe. This did concern me a little because I knew this was how babies are meant to explore their world.

Into his second year we noted

• he was an 'introvert'
• he wouldn't comply - he wasn't interested in adult approval. For example, when looking at a picture and saying 'where's the dog?', he would never point or show any engagement in what I was doing with him
• he didn't point
• around 18mths he became increasingly anxious in new environments. I couldn't go anywhere unfamiliar by myself with the 3 boys. E needed my complete attention and even then he didn't cope.
• he had delayed speech - by age 2, he spoke about 6 words.
• he was hard to 'get to know'; he 'played his cards close'. He never gave much away about himself.
• for his second birthday, I didn't know what to get him because I didn't know what he liked other than balls.

After 2:

• disturbed sleep became the norm, waking 2-3 times (if not more) during the night.
• his behaviour became worse
• he started headbanging when angry or frustrated

When E was 2.5yrs old we took him to an audiologist to have his hearing checked. This was just to rule any hearing problems out - his hearing was fine. However, despite having a speech assessment done by a speech pathologist and being engaged in a language group through the local health clinic, it was the audiologist of whom spent about 10min with E, who suggested I have him assessed. He noticed he engaged differently with him (or not at all) and was incredibly unsettled during the test. Of course, this sent me home to begin diagnosis by internet (well not exactly, but you know how it is!!)

Thoughts of possible autism had passed through my mind once or twice in earlier times, but my naive assumptions about people with autism is that they didn't like affection. E loves affection. He is extremely cuddly -in fact, he would be happy to have a cuddle for most of the day if it was available to him. But once I started researching autism and its symptoms, I realised this is not the case. There is such a wide range of symptoms and yes, lack of affection is one of them.... but it is not the same in every person. It is possible to enjoy affection and still have ASD. So here is where our journey began.

The Woman Who Thinks Like a Cow

I discovered this amazing story last night. It is the story of Temple Grandin. It is 5 parts (10min each) but really worth watching. It is a great introduction into the nature of autism, a bit about its history (in the US) and how it affected Grandin's childhood and her adulthood. Her story is one of sadness and one of hope for those with ASD. She gives incredible insight into what it like to be a child with autism - living with frustration and fear. She describes what the journey is like to learn to live with autism in an almost alien world. When she discovers her passion for animals late in her teenage years, it is then she blossoms and begins to utilise her unique gifting and achieve things well beyond anyone ever imagined.

The movie 'Temple Grandin' has just been released starring Clare Danes to share her inspiring story. See trailer here.

Nuts and bolts

So, what is autism exactly and what causes it?

Autism is known as ASD - Autism Spectrum Disorder. A quote I heard recently 'to know someone with autism is not to know autism'. This is simply because autism has such wide ranging effects on individuals that no two are the same. Hence, the spectrum has been developed. However, even where a child is placed on the spectrum (mild to severe) there are still great differences in how autism effects an individual.

ASD is a brain-based condition where there seems to be neurological abnormalities in certain areas of the brain. The cause of autism is still unknown. It is clear that genetics plays a part in the disorder but it is complex and it is not the only contributing factor. The bottom line is no one really knows (as frustrating as this is to someone like me!) A prevelant and likely theory is that the connectors between brain cells and regions to not form normally. There is some disfunction in the way the brain communicates. This leads to certain information not being processed, understood or processed differently. People with autism will hear things different, read emotions differently (or not at all), play with things differently, speak differently, experience things differently (there are major sensory issue associated with autism.)

Autism is a severe disruption of the normal developmental processes that occur in the first three years of life. It leads to impaired language, play, cognitive, social and adaptive functioning, causing children to fall farther and farther behind their peers as they grow older.

Children with autism do not learn in the same way that children normally learn. They seem to not understand simple verbal and non verbal communication, respond differently to sensory imput, and withdraw in varying degrees from people and the world around them. They show little interest in other children and tend not to learn by observing and imitating others. They become preoccupied with certain activities and objects that interfere with development of play.

excerpt from Autism Partnership Australia

More and more children are being diagnosed with autism. In Australia one in 160 children will be diagnosed. The rate has been steadily increasing since the 1990's. Some of this is due to more children being diagnosed, changes in how children are diagnosed but there are some theories that our environment is contributing to this increase as well.

Here I am

I don't think I ever imagined I would start a blog with the title of this one. I don't suppose anyone ever does. No one wants their child to have a disability or developmental disorder. No one wants their child to be different, to struggle, to face trials that you as a parent have never had to face. But here I am... walking the road of autism.

My son E is 2.5yrs old. He is my second child out of three boys. He was born 'healthy' and 'normal'. I suppose most parents breathe that sigh of relief after their child is born when the doctors/midwives declare your child to be healthy. During pregnancy, there is always that 'what if?' It is so easy to take 'full health' for granted. I just assumed that once born healthy, he would stay that way unless there was some sort of accident. If born 'normal' then normal development would follow. Not necessarily so.

We are very young in this journey. The realisation that our son has autism has only occured in the last 2months. Everything is fresh. Information. Understanding. Processing. Grief. Medical appointments. More medical appoinments. Intervention. Therapy.

I hope this blog achieves two things. Firstly, it's a place for me to process. Download. Clarify my emotions. I have always been a 'heart on the sleeve' kind of person. So expect brutal honesty. Secondly, it will be a place to consolidate knowledge. I will post the accumulation of information (hopefully in a concise way!) as I learn what autism is and what it means to parent a child with autism. Please feel free to comment or send helpful info/links. If you are on a similar journey, I'd love to hear from you. The road already feels quite lonely.