5 reasons that autism has made me a better mother.

boys and Fi StairsSince today is Mother’s Day, I thought it would be a perfect opportunity to share this post that I’ve had in my head for a while.

I’ve written many times about how you feel as a parent when you first receive that autism diagnosis and about having either an accompanying sense of relief because you finally have answers, or the overpowering grief at the loss of the dreams that you one held for your child and their future.

I discovered that when you become an autism parent you are left with the choice to either allow it to drown you or make you a better person. I drowned for many years. Far too many years actually – and even now – I still have days where I’m treading water and struggling to stay afloat but I’m not going to write about that stuff now. Tonight my post is going to be focused on all of the ways that I have noticed that autism has made me into a much better mother.

 Autism has made me a better mother because:

 1. It has caused me to slow down, to have patience and to be thankful for the little things that other people often take for granted.

I have always been an impulsive person. I like to live in the moment and I don’t like to plan ahead. My personality likes to make things up as I go along and you could describe me as someone who ‘wings it’ a lot of the time. I get agitated when I have to wait as I am incredibly impatient and my attention span (or lack thereof) often causes me to miss the finer details and skip over the boring stuff and I just want to get to the final destination having as much fun as I can along the way.

But then autism entered my world and turned it on it’s head.

I clearly remember a day many years ago when Harley was very small, probably about 4 or 5 and we were going for a walk to the park together. I just wanted to get there already and turned around every few minutes to tell him to hurry up. He was dawdling and was frustrating me because he kept crouching down and looking at the concrete path. He would stop every few steps and stare at the ground completely oblivious to my voice and my directions.

He was in his own world and his little face was etched with wonder and delight so eventually I crouched down beside him to see what was fascinating him so much.

He grabbed my hand and squeezed it and pointed (he still had very little discernible speech at this age) and then touched my cheek to turn my head to look at him. Then he smiled broadly and said: “Anz Mummy. Anz are cweeping an dey cawwy food to da hole”.

And my gaze was directed to the line of hundreds of ants who were all carrying crumbs from a sandwich – that was discarded on the side of the road – into their ant’s nest about half a metre away from where we knelt.

In that moment I realised that maybe going to the park was MY plan and that my little boy was having just as much fun watching these ants as I had imagined he would have at the playground. So we sat down and watched these stupid ants for probably another hour or so until he became tired. We never got to that playground that day but my boy was happy.

I learnt that day that my kid was never going to be like all the other kids. I learnt that he didn’t care much for playing with other children at the park but that he was able to find his happy place on a cracked footpath in the middle of suburbia with his Mama sitting right there beside him waving at the passing cars.

We have MANY moments like this in our house. The boys often being hyper focused on one small detail and become absorbed by whatever has taken their attention. Their autism and attention to detail has helped me to slow down and appreciate the beauty in everyday life that I would otherwise miss because I am always in too much of a hurry.

2. Autism has given me given me a deeper compassion for those who struggle in life.

It is often said that autism, like many other disorders such as ADHD, ODD, OCD etc are “invisible disabilities”. Meaning that unlike a child in a wheelchair, it’s not always obvious that the child has an impairment.

So these children are often expected to be like ‘every other kid’ and are told that they’re making excuses or being lazy when they are unable to conform to society expectations or when their sensory system is playing havoc because of their surrounding environment.

And that is rough.

I have experienced it first hand by hearing nasty comments aimed at both me as a parent and at my melting down child. I have also heard it from friends of mine who are now adults on the spectrum and this makes me sad.

They are frequently misunderstood and judged unfairly because they “look” just like everyone else and they are overlooked and labeled as ‘freaks’ ‘weirdoes’ or ‘attention seekers’ because of the massive lack of awareness and understanding for their struggles and the impact that it can have on their daily lives.

And I wouldn’t have the insight that I do into these difficulties and challenges that these guys face every day if I wasn’t privileged enough to experience autism first hand and see that there is always a lot more going on than what the naked eye can see.

Since becoming a mother to children with autism, I have learned to ALWAYS give the benefit of the doubt and to extend compassion in situations that I may have been judgmental towards previously.

3. Autism has helped me to stop and see the bigger picture instead of getting stuck on the ‘hard’ that’s directly in front of me.

 

I’m trying to write a positive post here but it kinda goes without saying that often autism is ROUGH. Not just on us as a family but also on my children when they are thrust into unfamiliar or frightening situations.

It can be very tempting to wallow (and I still do) when one of my kids is having a hard time but I’m learning (albeit slowly) that progress is what I should always shift my focus to when times like this hit.

I have learnt to cast my mind back to when Harley (particularly) was a lot younger and the mere thought of entering a supermarket would send chills up my spine. Back in those days he wouldn’t be able to manage more than a few minutes inside before the head banging, the screaming and the crying would begin and I would beat a hasty retreat defeated and depleted.

But those days are no more.

Sure, we still encounter public meltdowns, but these days I am more equipped, he has learnt better coping mechanisms and I have learnt to read his vital signs and know when it’s time to leave and on most occasions – either redirect him or get out before the explosion occurs.

By mentally giving myself a talking to and choosing to look at the progress, I am able to see just how far we’ve all come instead of allowing the current “hard” to overwhelm me.

4. Autism has shown me than I am stronger that I would have ever believed and a lot tougher than I ever gave myself credit for.

I have experienced very high highs and extremely low lows. I have watched my child struggle to talk, to breathe, to eat, to sleep, to socialise, to learn, to ‘fit in’, to dress himself and to just survive and that does something to you.

That destroys a part of your heart. It is SO HARD to watch a piece of you battle constantly and be unable to take their pain away.

I have fought the government, schools, teachers, doctors, specialists, other parents and friends and I haven’t always won but through these challenges I have learned that I AM ENOUGH.

Because enough doesn’t mean that my house is always spotless. Enough doesn’t mean that I will always keep my cool and never yell at my kids.
Enough doesn’t mean that my marriage is perfect. And enough certainly doesn’t mean that I have got it all together, but enough means (by definition) “as much as required.”

‘Enough’ means to me, that though there’s rarely any of me left over at the end of each day – my kids are fed, they are healthy and for the most part – they are happy. Taking on board the concept that ‘I am enough’ has brought me such freedom and peace.

And lastly;

5. Autism has allowed me to grow into the mother that I am today.

I had to make the decision years ago to either sink or swim because autism clearly wasn’t going anywhere. So I threw myself into learning whatever I could about how my boy’s brains are wired so that I could approach mothering them from an educated and informed position. I came into this knowing nothing about autism and had to make the choice to either be an involved parent, or leave my ill-equipped kids to navigate this scary world on their own. As I wrote earlier; I am not motivated or organised by nature but autism has given me the opportunity to develop these skills and become a better and less selfish person. You cannot be a good parent of any child if you continue to put yourself first and this was a hard lesson for me to learn but I am SO glad that I did.

 

10 ways to spot autism in a crowd…

I am often asked the question: “What does autism look like” or “How can I tell if a child has autism” and the simple answer to those questions is “You can’t”. Because autism doesn’t have a particular ‘look’ but is detected by observing behaviours NOT appearance.

Autism is often referred to as the silent disability because there is no wheelchair or defining facial features to help identify it at first glance.

But if you know what you’re looking for – its not as difficult to recognise as you might think. It’s important to me to share this because the more that society is taught about differences – the greater the acceptance and tolerance levels toward children and adults on the spectrum for the future generations. So I are condensed a lot of information here into ten short points that may indicate an autism spectrum disorder.

The first rule of thumb in possibly identifying autism is;

ALWAYS GIVE THE BENEFIT OF THE DOUBT.

Whenever you see a child who appears to be odd or quirky or if their behaviour is not quite right-even if you can’t put your finger on the possible reason or see any other indicators of a disability, assume that there is more to the situation than meets the eye.

For example: If you see an older child having a tantrum in public then it’s usually safe to assume that there is something else going on here. Generally, kids are too embarrassed to pitch a full blown tantrum past the ages of 5 because they have enough self-awareness to know that people will stare at them. But not in the autistic child because often they are simply unable to contain their emotional and sensory overload and it is no longer a matter of choosing whether or not to hold it in.

That’s not to say that older children don’t have tantrums, but in an older child, a tantrum in public is usually much more subtle. These tantrums are designed to get their own way without attracting attention to themselves. Like kicking a shop display, or mumbling insults under their breath or sulking and refusing to do what they’re told. But not flailing and screaming in front of dozens of onlookers.

And in an autistic child, what may start as a silly little tantrum can quickly escalate into a full blown meltdown if they are unable to make themselves understood. Usually something has triggered this tantrum and if its not nipped in the bud it can get really messy really fast. Autistic children cannot control these meltdowns and are unaware that they are causing a scene and giving into them wouldn’t end the yelling whereas in a tantrum – it would.

But back to spotting autism….

Let’s imagine that you are in a playground and you know that there is an autistic child playing in there but have no idea which one it is. What would be the first clue that you would look for?

For me, spotting that child would be as simple as looking for the one who seems to be on the outer.

1. BEING ALOOF:

The child who either plays alone or is trailing along behind the other kids desperately wanting to be included. It’s often wrongly assumed that autistic kids don’t care for other kids but often it’s just their underdeveloped social skills and lack of social intuition that are holding them back. Most of the time they desperately want friends but don’t know how to initiate conversations or interact with other children. These kids don’t read body language or facial expressions and may not understand if another child gives them the ‘leave me alone’ face. Children on the autism spectrum learn by mimicking their typically developing peers and you would be looking for the child who is ‘following’ rather than leading the group.

However – in some of the higher functioning children (Aspergers Syndrome especially) the child may actually be the ‘life of the party’ and come across as obnoxious, precocious, loud, inflexible and unreasonable. But it’s important to remember that this is not a character flaw – it’s indicative of their under developed social awareness. They just want to be included but don’t understand how to do this in a socially acceptable manner. Either way – the child has a definite “quirkiness” about them.

2: REPETITIVE PLAY

Children with autism may also indulge in a lot of repetitive play. They may sit and watch the spinning of a wheel for a long time or continue to retrace their steps and repeat the same actions over and over again never seeming to tire of the monotony. That’s because children with autism enjoy getting the same result every time and take great comfort from being able to predict the outcome in an otherwise unpredictable world. These kids may also group items together or line them up. Example: rocks in a line in a sandpit or leaves sorted into colour shades.

3. EYE CONTACT

A child who has autism will rarely make eye contact with strangers or with other children. They can sometimes appear to be ignoring you but this is rarely the case. I’ve been told by autistic individuals that they are unable to look at people when they’re spoken to because it confuses them and they have to stop listening in order to look. They say that looking in people’s eyes is frightening unless they know , love and trust the person talking. Often times a child with autism may become mute when a stranger speaks to them because they cannot form the correct words whilst their brain is in freak-out mode.

4. TOUCH

If a child is in fact on the autistic spectrum, they may react if they are touched, hugged or accidentally brushed up against in a playground setting. They may strike out at another child who playfully pushes, taps or attempts to cuddle them as they sense that their personal space is being invaded. Because of this, they can wrongly be labelled as ‘rough’ ‘mean’ or ‘aggressive’ but really it’s just their self-protection mode kicking in.

Or….a child who under registers stimuli may do the exact opposite and be overly affectionate and not seem to recognise those invisible boundaries that we all have. Either way – the behaviours displayed here in these two scenarios are an indication that there is something bigger going on with that child.

5. UNDERSTANDING VERBAL CUES

These kids struggle to understand and comprehend instructions especially if they’re complex or contain too many steps. So you’re looking for the child who seems to be deaf or ignoring their parents or who doesn’t register that they’ve been spoken to immediately. The child may explode if they are unable to convey their wants and needs to their caregiver and become frustrated if they’re not understood by other children.

6. REPETITION

An autistic child may repeat (and mimic) the phrases that other children use or insert lines from a movie or tv show into a conversation whether it fits or not. This is called echolalia and it is a very common communication tool for children who are developing speech.

7. RULES

If a group of children are playing together and one of them changes the ‘rules’ or starts to play it differently, the autistic child may react with aggression or anger because they are not coping with change and suddenly become frightened at their lack of understanding. Autistic children thrive on rules and routines and require them to function peacefully.

8. SENSORY STIMULII

A child with autism may severely under or over react to noises, crowds, smells and sights. This is all due to their sensory system either being overloaded or under registering. Most typically developing children won’t notice subtle changes in noise levels or the sun getting brighter but you can bet your bottom dollar that the over sensory child will be the first to react negatively.

9. UNUSUAL COMPASSION

Children with autism usually always have an affinity with nature and with animals. They seem to have somewhat of a connection that most of us just don’t understand. The autistic child may be the one who prefers to lay down in the dirt with a dog or finds a lizard underneath a rock. They may also become upset and inconsolable if another child steps on an insect and go into bat for the poor defenseless ants that are crawling up your leg!

Every single autistic individual that I have met has got a very gentle nature and a sensitivity to all forms of life that most of us could really only dream of.

10. DANGER AWARENESS

The last thing to look for is the child who has no apparent fear of danger or consequence. And this goes beyond the normal ‘rough and tumble’ boy stuff. These kids have an underdeveloped sense of caution and just don’t see the risks that most other children would instinctively notice. Look for the child climbing up the flying fox or jumping off the top level of the climbing structure or – *gasp* running onto a highway to get to the shiny object that has caught their eye over the other side.

Autism really is beautiful. It is almost magical and it is extremely rewarding to live with. But how do I know this? I and the mother of two boys who have autism and they have taught me so much more than I could have ever imagined.

Because of them, I now appreciate the smaller things that most folk often take for granted. I am learning to look for beauty in the most unlikely places and I no longer take anything at face value.

Let me encourage you all to dig deeper, invest into those “different” people in society and you will always find that it was more than worth the effort.

 

10 things Harley wishes you knew…

This is inspired by Ellen Nothbohm’s book “Ten things your child with autism wish you knew….

1. I have feelings and emotions just like everyone else. I don’t always know how to express them and they sometimes overwhelm me.   Talking about me or my behaviour while I am in the room is a very bad idea. I have autism- I am not deaf or stupid.

2. My parents did not make me this way by bad parenting. They are doing the best they can with what they know. I do not need to be medicated, punished or cured. I was born this way.

3. This is how God planned for me to be. It cannot be smacked out of me, nor will I grow out of it. If I am having a meltdown, don’t always assume that it’s because I didn’t get my own way. If my environment is crowded, noisy or action packed, my sensory system becomes overloaded.

4. I did not choose to be different. I just am. I am proud of who I am because I am unique. All autistic people are individuals and different to each other. Please do not pigeon hole or stereo-type me.

5.When you ask me a question….you need to wait for my answer. I need time to process it and may take more time than usual to answer. Please don’t hurry me, it will only cause me stress. I need to go at my own pace.

6. I need to complete my sentences in full. If you cut me off mid sentence or finish it for me, I will lose my momentum and get frustrated. This may cause me to meltdown.

7. If you are talking to me and you lean over and touch me- I may react badly. Please remember that you need to ask to touch me. I’m very sensitive to touch. What feels like a brush on the arm to you , feels like a razor blade to me. I  need to be pre-warned.

8. Just because I don’t look you in the eye doesn’t mean I’m not listening to you. I find it almost impossible to do both at the same time.

9. I see things as either black or white. There is no grey. There’s no point trying to make me see otherwise. I am only 9. I still need to learn the social art of diplomacy.

10. I am trying my best to fit into “your” world, so please learn more about autism so you can understand mine.