We had been out all day sight-seeing and had come back to the hotel briefly to shower and change ready for dinner. As I kicked off my shoes I noticed a red light that was flashing on the phone on the bedside table. I looked over and saw that Paul had noticed it too. We locked eyes and I noticed the tears forming in his eyes to match the ones forming in my own.
We both knew exactly what it meant but neither of us moved for almost ten minutes. We sat side by side on the corner of the bed holding hands and wiping our own tears away in total silence. We stared at each other, each of us willing the other to walk over to the phone and find out for sure.
We were hoping and praying that it was just a simple benign message from one of the tours that we had planned and not the call that we had been dreading but Paul eventually picked up the handset and punched in the numbers. I saw his face pale at the same time that I heard my Mum’s voice gently saying: “I’m sorry to have to spoil your trip but he’s gone”.
My Dad had passed away during the night and she had been unable to contact us to let us know so left a message instead. I was gutted and wracked with guilt.
Eventually we managed to clean ourselves up and made our way down to dinner where we quietly mingled with our tour group who were unaware of how much our world had just been turned on it’s head.
It was Saturday the 24th February 2008 and Paul and I were on a business retreat in Queenstown New Zealand through his work along with other co-workers and their wives.
Paul was the one who had planned the whole trip and organised all the activities – he was needed and we decided that we would keep our news to ourselves so as to not ruin everyone else’s holiday. We only had 2 days left and Mum told us to stay on because the funeral would take that long to plan anyway.
I barely slept a wink that night. I tossed and turned and my brain just would not stop. I worried about how I was going to tell the children. They adored their Granddad and Harley often asked if Granddad was over his cancer yet as though it were a common cold. Harley was 3 and not yet diagnosed and Lucas was still a baby. We made the decision not to tell Paul’s Mum who was staying with the children back home in Australia because somehow we instinctively knew that Harley was so sensitive to even the most subtle of changes in his caregivers.
I worried that the children would somehow blame me for abandoning them and I knew that I’d have to be extremely careful in how I chose to broach the subject with them once I returned home again. I remember looking over at Paul as he slept soundly and envied his restful state. I’d spent most of the night churning over all the different possible scenarios in my head trying desperately to figure out which direction to head in.
I opted not to go down to breakfast with the rest of the group the next morning, but told Paul that I needed to go for a walk to clear my head. It was a cool morning and I decided that the fresh brisk air would do me the world of good. I rugged up and stepped outside.
As I walked along I heard a guitar strumming softly in the distance and as I turned a corner I noticed a lady sitting on some stairs humming quietly along to her guitar and I was intrigued.
She looked up at me and smiled and it was then that I noticed that she was sitting in the doorway of one of the most beautiful and quaint old churches that I’ve ever seen. It was perfectly nestled into the streetscape and surrounded by gorgeous rolling snow-covered hills and I immediately felt an overwhelming peace and comfort wash over me . At that moment, I had perfect clarity of mind for the first time since receiving that call. A lady who introduced herself as Janet came and took me gently by the arm ushering me inside the building and placed a warm mug of tea in one of my hands and a freshly baked scone in the other. She sat me down and introduced me to a small gathering of people who were from England, Scotland and another Australian.
I soon found out that this church was not like any other church that I had ever been in but was more of a ministry to backpackers and travelers and the like. It was a café setting and an outreach to people who were hurting, lost and troubled.
I must have looked like a hobo wandering the streets at a ridiculous hour of the morning in a too big parka that belonged to my husband and dirty denim jeans and sneakers. But I’m sure that I fitted their usual clientele stereotype perfectly!
I was welcomed in, nurtured and somehow these people knew exactly what it was that I needed. I was hugged, listened to and valued and I hadn’t told a single person that I’d lost my Dad only hours earlier.
I stayed a while chatting and sipping my tea until gradually we all started to leave one by one. As I got up to leave myself, I was hugged by several people and was handed a bible (which I still have) with an inscription inside the front cover that reads: ‘Blessings from Vineyard Queenstown, be blessed in Christ’s name’.
Every time I look at this bible now, I am reminded of how God reached out to me in one of my most painful moments. It is a constant reminder that He will always provide me with just what I need exactly when I need it. This tiny little non-denominational and non-confrontational welcoming church serves as a constant memory of God’s grace and mercy and is a promise that He will always equip me to deal with the children that he has blessed me with.
He gives me the grace I need to face challenges that my human mind is baffled by. He provides a way out when things look hopeless and He promises that He will never leave or forsake me regardless of how ridiculous life’s circumstances may appear at the time. I don’t believe that this amazing experience was just merely a co-incidence. I truly believe that God met me in my darkest hour and that He provided just what I needed at that time. This chance encounter was all in HIS perfect timing. I was meant to walk past that church that February morning just as I was meant to be blessed with my amazing though challenging children.
Everything is in His perfect plan whether I understand it or not.
Little did I realise at the time that losing my Dad would be the beginning of a very long chain of events that have all helped to shape me into the kind of mother that my children need.
Imperfect by the world’s standards but perfect for what God has in His master plan.
Dear 17 year old me,
You will eventually learn to like your name. You will never love it but you will one day actually tell people your real name when they ask. You think it’s funny now when you tell people it’s Beryl and giggle at their surprised faces, but it will get old fast.
So, do you see those people that you’re sharing the school playground with? Yeah, well you don’t have to be friends with all of them after school finishes for good next year. Some of them you will lose touch with and you won’t care at all, but others will always hold a special place in your heart and you will reconnect with them when you’re all grown up. They will mean more to you then than they do now because age brings new perspectives.
And your parents? You think they’re old and don’t understand you but you really need to know just how much they * do* love you. I mean REALLY love you. So much more than you could ever realise. One day you will have children of your own and only then will you actually “get” it.
After you leave school, you will move a long way from home because you think you know better than anyone but guess what? You don’t.
You will get yourself into some mighty fine messes and your parents will dig you out every.single.time because they love you that much. You are stubborn though and it will take you a long time to realise this and thank them for it.
After spending another 2 years doing some really stupid stuff like jumping from job to job and hanging out with the wrong crowd you will eventually tire of the rebellious lifestyle. But do you remember the story about the prodigal son in the bible? Yeah, well good, because that’s kinda who you become.
You will eventually go home with your tail between your legs and move home again until you get back on your feet. And your parents take you in with open arms and love on you and encourage you to right your broken relationship with Jesus. It will be the best thing that you will ever do.
Your Dad will teach you that if you have God in your life; anything else is just icing and that you need to look to Jesus for happiness because a man will never provide what only God can.
He will teach you that all men and women are flawed by their human-ness and will ultimately fail you at one time or another because of this, but that God will never let you down.
You will never forget this and there will be times in your life that you hold fast to this teaching because people will let you down but you will only be disappointed – not destroyed.
You will marry and it won’t always be smooth sailing, but you chose to put your hope in God so you’ll survive every storm intact.
You will have 3 children and they will bless you, frustrate you and complete you all at once.
But it won’t be easy. Two of your children will be boys and they will both have autism. You will fall apart at first but surprise yourself by picking yourself up and carrying on despite your heartbreak and lack of faith in yourself.
You will lose friends once the news gets out and it will hurt, but all will not be lost because much better and more loyal friends will replace the void that they left.
You will experience great loss in the death of your beloved Dad, great heartache in watching your children struggle and great pain as you endure a lot of personal health issues but you will survive them all and come out a stronger person at the other side.
Eventually, you will learn that you can find happiness and beauty in the small everyday things if you just stop long enough to notice them.
Autism will give you the ability to appreciate things that other people take for granted and bless you with the desire to be a better parent.
One day, you’ll read this letter back and you’ll smile, you’ll laugh and you’ll wipe away stray tears that inevitably fall, but you will know that you have done the best that you can with that which you have been given.
And you will continue to rejoice through both hard times and good because you KNOW that life is what you make of it.
Love 37-yr-old you xxx
First of all, welcome.
I’m glad you have dropped by my blog for whatever reason. 🙂
A little about the history of this blog: I have blogged previously at 2 other WordPress blogs and originally began blogging about my family back in April of 2010.
During that time I was Freshly Pressed and gained a sizeable number of email subscribers, blog followers and daily hits. But one day it occurred to me that none of this was important to me.
I realised that I really didn’t give a toss about those statistics, but what I found myself placing more importance on, was being true to myself, protecting my children’s rights and writing from my heart even if it wasn’t going to get noticed. I realised that I didn’t want to write about what everyone else seemed to be writing about and I wasn’t really interested in becoming a big-time blogger. (Plus, I didn’t have the time to put into promoting my blog or blogging regularly anyway!)
I wanted to go back to why I originally started blogging – to create a place where I would be able to gain the therapeutic benefits that writing brings me, and also so that I could share our story with other families who may be walking along similar paths.
I have learned a LOT since my very first blog post and I admit that when I started out, I was INCREDIBLY naive. I now realise that:
- Not everyone on the internet is kind.
- Having a child with a diagnosis is not always enough in common to cement friendships with other autism parents.
- There will always be people out there who will disagree with you and they will not be backwards in coming forward with their views and opinions.
- Some of them will get personal.
- Being too honest will open you up to cyber-bullying and may get you accused of playing the “poor me” card too often.
- You have to decide to either let them win or refuse to be bullied into defeat.
- Some people on the internet hide behind their computers and write things that they would probably never say to your face.
- Children don’t deserve to be ridiculed because of decisions and choices that their parents have made.
- I am extremely emotional and make too many decisions with my heart and not enough with my head.
- I am not like everyone else and I march to the beat of a very different drum. And that is completely and entirely ok.
So in saying that – welcome to “Wonderfully Wired version 2”.
This time I will be refraining from posting photographs of my children. (Yes I realise that the internet has things called caches and our digital footprint already exists) but I have no control over that. I do however, have control of what I post from now on.
To begin with, this blog will be mostly made up of a collection of my most favourite posts and the ones that I am most proud of. So those of you who followed the older blog (which is now deleted) will have a sense of de ja vu when reading some of these posts. I will be starting to add newer posts as I feel inspired sometime in the new year and when life has returned to ‘our version’ of normal.
Hopefully you’ll all join me to share in the trials and triumphs that 2014 will bring.
Please note that the URL of this blog has changed to http://www.wonderfullywiredblog.wordpress.com so if you had the old URL (same but without the word ‘blog’ in it) you will need to change it in your bookmarks.
Also – if you had an email subscription or “followed” the old blog via WordPress – you will also need to re-follow or re-enter your email address in order to remain on the receiving list for new posts.
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.
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.
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.
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.
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.
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
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.