Early Days

My husband and I attended an Early Days workshop last Saturday. It was a fully government funded workshop (including breaks and lunch) which ran from 9.30am-4.30pm. We attended the Introduction to Autism workshop. They also run others on behaviour management and play skills.

The workshops are run in different geographical areas which is helpful for creating networks and meeting other families walking through similar things. All but one family in our workshop had a child who had been diagnosed within the last couple of months.

The room was set up with two large tables with seats all around the tables. This immediately set the tone of the workshop, away from lecture style to dialogue and discussion. It was facilitated by two people - one occupational therapist (OT) and one speech therapist (ST). Both of the facilitators had extensive experience working with children with autism.

We were glad we went. It was a chance for the two of us to spend a significant amount of time together processing information on autism and chatting through issues relevant to our son. The workshop was structured in a way that allowed for much discussion around the table and giving everyone a chance to present a 'problem' for the group to dialogue around and make suggestions for possible ways forward. I think we had a particularly 'chatty' group which meant there was less lecture and more discussion.

We were also lucky enough to have an autism advisor from ASPECT sit in on our workshop. This is not normal and she was just observing. However, it added great value to the day as there was information that she was well versed in that the other two facilitators were not. Particularly in areas of current funding, policy and the different departments - she was a goldmine!

The workshop walked through information on autism - most of which we were already aware of having done our own reading. So it was the group discussion that we found most helpful. The workshop also covered information on different therapies, how to choose the most appropriate therapy ( a real maze - still finding our way through), what to be cautious of and what funding/ rebates are available.

What was probably most helpful to us personally is realising the 'sensory' issues that E might be daily struggling with. We talked with the group about E's need to surround himself. He likes to gather all objects the same together. He likes to have all the balls together. Or he will surround himself outside with all the bikes. Sometimes he will enclosed himself with chairs. He loves to go under the dining table and tuck all the chairs under the table. All these actions can lead to problems particularly when others want to use a bike, a ball or sit on a chair! The group highlighted to us that apart from this being an obsessive behaviour (which it is) it probably indicative of E's sensory needs.

Children with autism are often over sensitive or under sensitive to things. You might be aware that some children are not very affectionate - this is because they are over sensitive to touch. Others will be under sensitive - this is probably E, since he LOVES long, tight cuddles. He is craving pressure on his body. Thus, his behaviour may be as a result of this under sensitivity. By pulling all the chairs around him, he is trying to create a sense of that pressure (even if it doesn't actually provide the pressure).

So we were introduced to the term 'sensory diet'. Just like we consider our daily needs with food, so we need to consider E's daily sensory needs. By providing for these we may reduce his anxiety and stress which then should have a positive impact on his daily moods and behaviour. We will need to engage the expertise of an OT to figure out what will suit E but it could include things like rolling E up in a rug or thin foam mattress across the floor mulitple times a day. (Yes, it does sound a bit weird!!)

So all in all, the workshop was helpful and engaging and well worth attending. It is totally free, they run numerous workshops per year (check their website) and your child does not need a diagnosis to attend.

Failing and floundering into the hands of grace

An old friend has reminded me today that God's mercies are new everyday and are enough for today. Such true words and so easily forgotten.

It has been a particularly hard week. I sense that E's behaviour is getting worse and he has started his disturbed night pattern again. So the last few night's I have been up and down with my almost 3 yr old and up and down with my one year old. They both only want me, so some night's are a real juggling act, trying to get one settled before the other one screams so loud that they'll keep the other one awake and then I'll have two screaming for mummy.

My mood is definately low again. It's hard to find the energy to deal with E- even when I do, I don't know what to do. You cannot deal with a child with autism the same way you deal with a 'normal' child. Standard discipline strategies don't work. My child kicks, throws, headbangs, hits, screams for hours if he has to, bangs his head on the wall, runs around the house making as much mess as possible - tipping toys boxes over, throwing things around the room. He is hard to physically restrain and when you have a 1 yr old to look after, it's impossible to do this anyway. I know I need to be more consistent with his behaviour but I don't know what to do and I don't know how to do it as well as give attention my other two children. E needs so much energy and attention which I don't have.

So I am floundering and feel like I am failing E. He needs more from me than this. Some days I just ignore his behaviour. I can't seem to do anything but cry about it. I don't know what is going on in his head and half the time I don't know what triggers the behaviour. I don't know how to meet the needs of all my children. This breaks my heart.

In my failing and floundering I have fallen. Fallen into the hands of grace. This is where I find myself today. Crying out for help. I can't do it on my own. I can't do it in my own strength. I can't do it without you, Jesus. Be my strength, be my wisdom, be my friend.

A window not a box

Photo from here
When E was diagnosed, the paediatrican asked us how we felt about it, especially if in 10 years time it was decided that autism was no longer an appropriate diagnosis. That in fact, he never had it... he just presented with many features of it.

As I said in the last post, the paediatrican was uncertain about E's diagnosis. He felt E's eye contact was uncharacteristic of autism. He did feel, however, that with all the other features presenting and our and E's need for help it was an appropriate diagnosis.

We were grateful for the question. A thoughtful, insightful question. But for us it wasn't an issue. We didn't have a sense that maybe we were labelling our child with something unnecessarily. That somehow we would destroy his childhood due to a misdiagnosis. It is not a 'label' that he needs to be aware of for many years yet and the label gives us opportunities to intervene and help him in ways we could not without it.

My husband's answer to his question was simple 'Autism is a window, not a box.'

By diagnosing him, we aren't placing him in box and defining him by medical categories. The diagnosis is an invitation to see the world differently. An invitation to look at the world through different eyes, a different lense. People with autism see, hear and experience the world differently to the rest of us. They process information differently. Sight, sound, smell, taste and touch are experienced differently. They are often over-sensory or under-sensory. They play with toys differently. They take interest in odd things, often small things, see detail that you and I would never see.

This is our invitation (and yours if you know E) to enter into his world. It will stretch us, mould us and challenge us - every day. But this is the key to helping E function in this world. When we understand some of his unique perspective we can slowly build bridges for him to learn things that come so naturally to the rest of us.

This is why we refuse to call him autistic. And never will. He is a child with autism. A subtle but important difference. Autism should not be his defining feature. It is an opportunity, an invitation, a window.

We pray E never feels we have boxed him into something he is not. Instead, helped him to grow into all he can be - looking through his window into the world.

Daily struggles... language & communication

There was a degree of uncertainty about E's diagnosis. His autism is mild and it is harder to diagnose especially when the person is young and has severe language delay. (Language delay can cause a child to mimic similar symptoms to autism due to the mere frustration of not being able to communicate). E has significant eye contact for a child with autism and this caused the paediatrician some pause. However, he also noticed other strong features of autism within E such as the way he appropriates language ( or misappropriates it).

Autism causes a significant social deficit in people. They cannot or have limited reading of social situations, voice intonation, facial expressions, body language etc. Normal social cues are often missed by people with autism. So teaching social acceptable behaviour is very difficult because there is no understanding of these things and no natural ability to assume these behaviours - they have to be learnt and mimicked.

People with autism will have difficultly in 3 main areas.
•Social communication: knowing what to say to other people and understanding what they are saying to you.
•Social understanding: knowing what to do when you are with others or behaving inappropriately (apparently oblivious to social rules).
•Imagination: pretend play, make believe and fantasy.
Source: Autism Northern Ireland

Source here

Language occurs within a social context. Often the meaning of words (especially in English) change depending on the context and intonation of voice. A person with autism will not naturally sense these social subtleties. It makes perfect sense why a child with autism will struggle with language.

E is building up his word bank slowly. At nearly 3, he probably has close to 200 words. (An average 3yr old would have 900-1000 words). They are nearly all in single word formation. Many are still words that he mimics. He is very slow at building spontaneous language. When he does use spontaneous language it can sometimes be out of context. This is a classic symptom of autism. For example, E has said 'bye dog' in a certain context which has obviously stuck in his memory. Now, whenever he says bye to something or someone else, he will also say 'bye dog'. He has also learnt the phrase 'Look at that, frog!' Now, whenever he chooses to point something out he will often use that phrase and call it a frog! There seems to be no awareness that there is no dog or frog to speak about!

Speech and communication are a daily struggle for us. For a period of time when E had no verbal or non verbal way of communicating we had major behaviour issues. Then he began to use some single words and start to take us by the hand and drag us to what he wanted. His tantrums became a bit less frequent. Now, they are on the increase again, because he is trying to speak more words which I don't understand.... if I don't respond immediately to E's needs, there is a major meltdown.

In comes visual aids for communicating. Well, the concept of it anyway. I actually haven't gotten around to printing and laminating all these aids yet. But I will soon. The idea is that E can point to or bring to me things that he wants. I can have some on a key ring for when we are out of the house. They also aid in establishing routines or helping children understand what is going to happen and when. You can place them into a sequence of events. I am looking forward to seeing how these help our day to day.

In my hand

In my hand I hold E's official diagnosis. E was only diagnosed last week and today I hold the report.

In my hand I read of his social deficits, his severe language and communication delay, his lack of emotional sharing, his lack of appropriate play, his impairment in the use of multiple non verbal behaviours, his preoccupation with restricted patterns of interest, his repetitive motor mannerisms.

In my hand I hold the key to getting help and support and accessing services for my son and for myself.

In my hand I see words. Clinical words. Words which put him in categories.

In my hand I do not see the glint in his eye that is occasionally given.
In my hand I do not see descriptions of the belly laugh which although only sometimes heard makes people stop and listen and smile.
In my hand I do not see the depth of cuddles that this boy loves.
In my hand I do not read about his love of animals and his fascination for all things small.
In my hand it does not reveal the level of joy felt when one has the privilege of glimpsing the real E, when this boy lets you in to his world.

In my hand is only a small part of the picture.

In my heart I hold him.

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.