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.

 

Neon signs and Eyebrows.

image via morguefile.com

image via morguefile.com

Today I got my eyelashes stuck together with hot wax and also somehow managed to wax off almost half of one eyebrow. All because I got momentarily distracted. It turns out that having poor eyesight and trying to do this with my glasses off wasn’t my smartest move!

I’m quite clever I know, and anyone who knows me well will attest that I am not known for my attention span, but today was a particularly bad one and I have one and a half eyebrows to prove it.

After I’d googled “how to remove wax from your eyelashes without pulling them out” (yes I really did) and I had read hundreds of ridiculous remedies, I eventually decided to try cutting it out with manicure scissors.

Yeah, that wasn’t my finest moment, either – so now, not only am I missing half an eyebrow, I also have only got a few small eyelashes on the opposite eye!

Oh my goodness I look quite a sexy beast I can tell you!

Then after I’d spent another ten minutes laughing at myself in the mirror, I jumped in my car and went down to the pharmacy to buy myself a set of fake lashes and an eyebrow pencil and I plan to google “how to draw an eyebrow” next.’

So I was telling this story to Paul tonight, and after he’d picked himself up off the floor from laughing he said: “Wow Fi, this would have devastated you only a few months ago. It would have had you in a total mess”.

He was right.

If something like this had have happened only as recently as a few months ago, I would’ve been a complete basket case. It would have been the proverbial straw that broke the camel’s back and would have pushed me over the edge because I was already standing on a very thin balance beam between coping and completely losing my mind.

But a lot has changed here recently and it takes ridiculous mishaps of the grooming variety like this for me to be able to realise just how far not only *I* have come, but how far all of us have come.

Many of you know that my boys started at their new school last week.

It was something that I knew in my heart of hearts had to happen but I kept putting it off because I was so incredibly afraid of change. But the story surrounding my final decision to move them is actually quite remarkable and I now feel ready to share a little bit of it here with you guys; my loyal readers.

It was back last November when I finally realised that things had reached a point with Harley’s OCD and anxiety disorder when he was referred to see a psychiatrist after saying some very troubling things to us. I won’t go into details of what he told us but suffice to say that it was enough to warrant immediate attention and enough to cause me to draw a line in the sand and look for a new school for him.

My Mum was visiting at the time and we spent literally hours researching schools, visiting campus after campus and making phone call after phone call, when one morning as I was I sitting opposite her in a cafe I said to God aloud: “I’m tired of chasing dead ends and I’m exhausted from trying to figure this out. Please give me a neon sign because I’m not in a place where I can pick up on subtle hints, I need something obvious. Give me a neon sign answer”.

I had no idea how powerful that prayer would turn out to be.

A few minutes after asking God for a sign, I got a phone call from my sister and she asked me why I hadn’t considered sending the boys to the local public school? I gave her the same stock standard answer that I gave everyone who asked me that question: “Because I’m afraid that the boys won’t get the education that they deserve”. Amongst other things that I really, really didn’t want to tell her.

But the truth was – I was probably just being an uninformed and clueless snob. It’s not that it is a bad school that my children are zoned to, it’s just that, ok yeah – I WAS being a snob and I clearly had my head so far up my butt that I just couldn’t see any sense.

So I told my sister that I would at least consider it because I knew deep down that she had a point and I was fast running out of options.

She then asked me to tell her exactly what it was that I didn’t like about the public school so eventually; I told her what else had been troubling me.

I could hear the loving smile in her voîce as she pointed out that the two main reasons that I gave her were actually both already happening at the Independent school, and she then pointed out that we were paying bucket loads of money for it! So in her words: “It can’t possibly be worse, and even if it is – at least you’re not paying for it”.

{I couldn’t argue with that logic and it turned out that this particular conversation ended up being the catalyst for several other decisions that I was able to make straight afterwards}.

So Mum and I finished our coffees and she suggested that we drive past the local school on our way home ‘just to have a look’ so I agreed. We talked in the car on our way there and I had started to reach a point where I was willing to give anything a go because I just didn’t have any peace about any of the schools that we’d visited.

I pulled up out the front of the school and climbed out of the car and started walking toward the administration office when I stopped dead in my tracks because out the front of the school was a flipping NEON sign with the words:  “Enrolling for 2014” and I started laughing.
I’d driven past this school countless times and never once had I ever noticed that sign before!

Mum and I looked at each other grinning ridiculously and I knew right then that I had my answer. It was unmistakable and I knew that there was no denying that God certainly had a sense of humour and that this was the place the boys needed to go.

So I went in and filled out the application forms on the spot and had a meeting with the Principal and Learning Support Head Teacher only a few days later.

At that meeting, they looked over all of the boy’s paperwork and put plans in place to transition them into the school almost immediately. They told us all about the programs that they ran for children on the spectrum and assured us that they would do everything in their power to bring Harley’s grades up where they needed to be.

They also told me that several of their teachers had just completed autism specific training and they promised to place each of the boys with one of the teachers.

And they did!

It’s now been almost 2 weeks since they started at their new school and both of the boys are absolutely loving it there. They are both coming home at peace, happy and the aggression and anger that we had become so accustomed to has vanished completely.

The stress and angst and anxiety that was permanently etched on Harley’s face has disappeared and he has become the gorgeous little boy that I knew was always hidden behind the agony that he had learned to live with.

He didn’t know that school could be this great and my only regret is that I didn’t do this sooner.

And me. Well, I have been able to wean off the anti-depressants that have been my constant companion for years because these days, I just don’t have the same levels of stress that my poor body had become used to.

Things certainly aren’t perfect in other areas, but I am now able to look in the mirror at my one eyebrow and laugh at the lack of eyelashes because I KNOW that in the grand scheme if things that this is really no big deal.

I can see now that things are definitely only going to get better and better. And that my friends: is HUGE!

But even after watching several tutorials on youtube, I still look like a bit of a circus freak so it looks like I’ll be sticking to the LARGE framed sunglasses for a while whenever I’m in public. If you know what I mean 😉

Addendum: psst – I got a job today too.
YAY!

Midnight Musings…

Screen Shot 2014-01-24 at 2.42.39 pm

 

 

 

 

1. Sometimes, it’s nothing you have or haven’t done that cause grief and heartache to enter into your life.
They just do.

2. There will always be some things in life that you will never find answers for, and you will drive yourself crazy trying to figure them out. Learn to be satisfied with not knowing everything.

3. Trying to work out the intentions and motivations behind other people’s words and actions is virtually impossible and turns out to be a massive drain on both time and energy.

4. One of the hardest things in life is pushing through depression and continuing to put one foot in front of the other when all you want to do is curl up into a tiny ball under the covers and cry.

5. You can preach autism awareness until you’re blue in the face but there will always, ALWAYS be those who will never ‘get it’ , those who REFUSE to ‘get it’ and sadly – a group of people who just don’t give a crap and you’ll never ever change them no matter what you say or do.

Making peace with this last group of people is vital for moving on and making progress. Cutting toxic people out of my life seemed harsh at first, but you can’t grow beautiful flowers in polluted, murky water.

And a bonus point:

6. Writing out my inner most thoughts at midnight may not turn out to be my best ever idea  😀

Life Lessons from 2013

I was thinking today, that I’d like to sit down and write a little about what I’ve gained in the area of life-lessons from last year
So what did it teach me? Here are the top 3 things.Screen Shot 2014-01-24 at 2.45.44 pm

1. God is everything.

Not religion, not church, and not just “faith”. I’m not talking rules and regulations here, nor am I talking legalities and requirements to do or say anything but a personal and truthful relationship with God.

With all that has gone on in my little family, He has remained a steadfast and strong rock for me to collapse on to time and time again. And this year I have collapsed a lot. Mentally, emotionally and even physically I have been pushed past my limit many times but through all my personal trials: God has been a constant source of strength and comfort.
I’ve had far too many friendships and relationships go pear-shaped this year and I have been baffled by most of them. I have found myself treading water on many occasions, but every time, EVERY TIME He has caught me and set my feet upon solid ground.

2. I’ve learned that I am enough.

I, (like the rest of you) will probably never be able to successfully juggle three kids, special needs, keeping house, working and studying all at once, but as long as I continue to do my best in all of those areas – that is 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.”

 

So ‘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.

3. I don’t have to be like everyone else.

This last one is similar to the above point (I am enough) but refers more to me personally. It refers to the fact that I am owning the parts of my personality and character that are unique and unusual and not following the crowd and I am starting to be ok with that. I’ve spent far too many years worrying that I am not like the rest and beating myself up for what I once considered to be character flaws.

For example: I admit that I am more emotional than your average Joe. I cry more, I take more things personally and I react to things that other people can just let slide. I take longer to get over things than most people, I get hurt more easily and I try to make everyone like me. I don’t cope when people are mean and I over-analyse EVERYTHING inside out and back to front until it turns my brain to mush and I end up in a crying soggy mess on the floor.

But on the flip side- I am extremely loyal to those whom I love to a fault. I forgive more times than people deserve it and I give second, third, fourth and so on chances when other people would have just written someone off. Even if I cut contact with someone to protect myself, I will always let them back once the dust has settled. It’s just who I am. And because of this, I will probably continue to get hurt time and time again, but this is me and this is how I’m made: and God doesn’t make junk.

I am learning to shake off what some people close to me have said and have started to see myself as God views me.

And the lastly: (3a if you like?!)

Autism is always going to be a part of my life.

It’s true – my boys won’t magically lose their diagnoses but they will continue to learn where they fit in this world. Slowly I am learning to embrace it and let it shape me. Autism can be a really huge pain in the butt, be heartbreakingly difficult and can rob my boys of so much but it is a part of who my boys are. I can dislike the difficulties that it brings them and my family but it doesn’t change my love for them at all.

Autism is no longer the big scary “A” word that it once was and for that I am grateful.

25 things to tell my children….

This is a list of 25 things that I really would like my children to learn about life and what I consider to be the most important things that I can teach them in my role as their mother.

I’ve written them all down in the form of a letter that I will print up and give to each of them when they turn 18 but for now, this list is laminated and stuck to the back of our toilet door!

I am amazed how much of this has sunk in over the past few years and regularly hear them quoting parts of is to each other.

Here goes:

My dear, precious, amazing children,

1. Please know that I love you all so incredibly much. And love is most definitely a verb.

2. There is nothing that any of you could ever do that would cause me to love you less. But this revelation is not permission to break the law, intentionally hurt someone or create havoc. There is also nothing that I wouldn’t do for any of you. But don’t deliberately push me just to find out my limit.

3. There are not enough hours in the day to show you how special you all are to me, and I want you to remember that even when it appears that I am pre-occupied and too busy for you – I’m only ever a hug away. I will drop anything if any of you ever need me. And don’t believe anything or anyone that disputes this because it’s simply not true.

4. I believe that you are all capable of achieving great things and I will support whatever life decision you make.  Even if what you choose to do is non-conventional and low paying. As long as it makes you happy and you do your best.

5. Having an asperger’s diagnosis gives you a reason for anger and resentment but not a right. There is a big difference. Some things will always seem more challenging and harder for you than for others but it’s not an excuse to give up. You are all blessed with many talents and skills and you WILL succeed despite being wired a little differently to your peers. Use this to your advantage instead. Choose to excel.

6. Respect those that are in leadership over you. You may not always agree with them but respect has nothing to do with this. If you learn this – you will go far in life.

7. Treat other people as you would like to be treated yourself and always go the extra mile.  Let people cut in front of you in lines, pay for friend’s meals and be the first one to say “I’m sorry” .

8. Don’t retaliate. It only exacerbates the problem and makes matters much worse. It doesn’t achieve anything but creates more drama and grief.

9. Always take the high road  – The view is much nicer from up there.

10. Don’t argue for argument’s sake and don’t desire to be right at all costs. It’s just not worth it in the end. Agreeing to disagree is a safer and much kinder route.

11. Stay close to one another. One day Dad and I will no longer be around and you will all need each other.  Even when you’ve all grown up and have gone your own ways – keep the sibling link alive and nurtured.

You will be pleased that you did.

12. Always do your best. You don’t have to always win, but as long as you gave it your best shot – that’s the most important thing.

13. Know what you want out of life and give it all you’ve got. Don’t worry if your dream is not the same as everyone else around you. We were all created differently for a reason. We don’t all have the same giftings.

14. There is no right or wrong choice when it comes to life plans.  The catch phrase I want you all to memorise and repeat as your life mantra is : Different is NOT wrong.

 15. Be who you are. Be who you were created to be. Don’t mimic other people because you envy their lives. Things are never really as they appear. Everyone has problems – some people are just better at hiding theirs than others.

16. Don’t sit back and expect everything to be handed to you. Work hard and work faithfully. God will see to it that you are rewarded accordingly.

17. Don’t believe everything that people tell you. If it doesn’t line up with the word of God and doesn’t sit right within you – don’t take it on board – it’s not for you. It’s ok to say no.

18. Don’t cheat and don’t be dishonest. You will ALWAYS be found out on both accounts and people will learn that you cannot be trusted.

Keep your integrity in everything.

19. Speak words of life and words of love. Don’t beat people down verbally and don’t always say everything that you are thinking. Once a sentence is out- it’s impossible to take it back again.

Think before you speak.

20. Choose you life partner wisely. Choose someone who you not only love, but someone who you respect. Make sure it’s someone that treats you how you deserve to be treated and treat them well in return.

21. Talk about everything before you decide to marry.

22. Ask the hard questions like:  Are we having children? When? How many? Where will we live?  What is our plan B if things start to go awry? & What is our ultimate escape plan as a family?  If you both know these things up front – most things can be worked out before they occur.

23. Aim high. Don’t settle for mediocre – you deserve the very best in life and don’t let anyone tell you otherwise.

24. Know your limits and learn balance. People pleasing is very taxing on your soul, your emotions, your family and ultimately your life. It’s impossible to serve two masters. Don’t let your work become more important than your family and don’t let anything become more important than your relationship with Christ.

Lastly and most importantly:

25.  Put your trust in God not man. Man will ultimately fail you because we are all only human but God will NEVER fail you or forsake you. He will never let you fall.

Love always Mum xxxxx

 

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.