Stilettos and Joggers

I was telling a friend the title for tonight’s post and we laughed about it.

We were discussing the act of walking in another person’s shoes and the difficulty factor involved when there are kids with special needs as part of the package.

I said that if the shoes you were made to walk in on another person’s journey were your own worn-in comfortable joggers – the walk would a lot more pleasant than if you were to walk the same path wearing unfamiliar and un-sturdy stilettos that pinched your feet every time you took a step.

And we agreed that as Mum’s of SN kids, we were often not given the option of footwear and were expected to sprint in heels regularly. But we’re not allowed to complain because this is our lot in life right? Somehow on some level we deserved to have more difficult children, or we were given them because “God” gives his toughest challenges to his strongest warriors (or insert any other cliché that SN mothers have been told to alleviate the speaker’s own feelings of guilt).  But the thing is – none of us put our hands up for this. This is just the way it is.

Lately – I am frequently overwhelmed with feelings of inadequacy. I constantly worry if I am doing enough to help Harley. I think about his future and wonder if he will be able to navigate adulthood or whether it will send him into frequent shut downs or worse – public meltdowns. And if he does shut or melt-down regularly – will he be able to hold down a job? A relationship? Friendships?

Last week was the school Easter Hat parade. Harley had told me in the morning that he didn’t want to go but I had a busy morning ahead of me so I made him go anyway. I turned up a few hours later to watch the parade and noticed during the event that Harley was dangerously close to losing it. As soon as it finished I went over to grab him to take him home early but knew by the look on his face that I was too late.

His class was the last one to walk around and he was on complete overload by the end. I walked him out of the auditorium and over towards his classroom when he turned to me and punched me in the stomach, he followed that up with a few kicks to my shins and some head butts for good measure. He was sobbing and moaning and clearly needed a safe place and I would have thrown him in the car if I could have found Lucas, but he had run off somewhere else and was somewhere amongst the throng of other parents and students.

I let go of Harley’s hand to take a phone call. It was Ella calling from over the other side of the school in the middle school area. She had somehow grabbed Lucas and was calling me to ask me to come get him because he was lost and looking for me. But by the time I had hung up from the call – Harley had taken of at full speed.  I tried to follow him but he was too fast.

My phone rung a second time and it was Ella again telling me that she’d seen Harley run past her and she’d noticed that he was terrified and told me which direction he’d headed in.
I eventually found him cowering inside a tent inside one of the junior school classrooms. My joggers had become stilettos again and I turned and walked out of the classroom alone and burst into tears.

Somehow, someone had alerted the head of junior school and she had gone into talk to him. Once he came out again to me she asked him to apologise to me and I was floored?

In all these years, it has never occurred to me to ask him to say sorry for hurting me whilst in the midst of a meltdown.

I just told myself that it was part and parcel of having a child with special needs. I told myself that he wasn’t in control of his emotions so therefore he didn’t need to make amends. I usually just nurse my wounds and try to pretend that it didn’t really matter.

But she pointed out that whilst he may have been unable to control himself at that time, he still needed to say sorry to me once he was calm again. She asked me (rhetorically) how he would go in the workplace if he never apologised for his outbursts. (If they happened).

I knew she had a really great point and I wondered if I had been strapping on stilettos when I should have been able to stay in my joggers all along?

Have I made things harder for myself by “allowing” certain behaviours that I would never allow from a typical child all under the guise of “he can’t help it”. Have I permitted my child to push me into a corner by not requiring him to take ownership of his actions.

Yeah….I really think I have! And discovering this about myself has opened my eyes to a whole new way of parenting.  I’m really not doing Harley any favours by not teaching him acceptable behaviour and if I continue to make excuses for him when he hurts me – how will he ever learn to treat other people the way they deserve to be treated?

It’s a tough question but one that I have had to eventually ask myself. I’m tired of running in heels.

A new year brings new things..

I learned many years ago that making new year resolutions was never something that was gonna work for me. I just don’t have the stick ability for anything.
I’m convinced I have some form of ADD or as my friend calls it: ADOS (Attention Deficit …Oh Shiny!)

I’ve never been good at finishing things that I start and I tend to give up when things don’t come easily to me. It’s not so much that I doubt myself or my own abilities so much as it is due to boredom overtaking me. Most of the time I simply couldn’t be bothered putting effort into things that I no longer enjoy doing, so usually….I quit. (And no, I’m not talking about jobs or anything in the workplace but personal hobbies etc….I’m not THAT bad!)

But thats the funny thing about parenting: Even when I’m not succeeding at it and continue hitting brick walls – I know that its not as simple as just throwing in the towel and walking away. However – having said that: I’m no Carol Brady – I still want to walk and give up at least once a week….I’m so far from the perfect Mum it even frightens me!

But here’s what I’ve discovered about myself: When rough times hit (and they do frequently when you’re raising kids like mine) I eventually get over myself and stick at this parenting gig not because I *have to* but because I *want to*. And there’s a massive difference in the two.

I have found that unless I’m doing something that my heart is truly in and am passionate about, I struggle to stay motivated. And yes…. I know that I have revealed some pretty massive character flaws here, but there you go. This is me. Take me as I am.

But the up side if all this revelation is that my kids definitely fall into the ‘totally passionate about and would do anything for’ category. There is literally nothing that I wouldn’t do for them.

Thats right: Nothing.

****

My sister was always career minded. She knew from a very young age that she wanted to be a graphic designer, so she went to Uni and became one. and shes a brilliant one too. She’s a go-getter and a doer. Always has been.

I however, have never really known just what I want out of life. I’m a bit of a floater you could say. I went through a small phase where I thought I didn’t want kids but then realised that being a mother was actually the ONLY thing I really wanted.

And I loved it from the second my daughter was born. I had found my calling. THIS was what I was going to be….a stay at home Mum. Forever.

But guess what I found out? Kids grow up. They become more independent and require less of you. Even though I consider myself fortunate for having my boys need me for longer (being slower to reach milestones etc) even they with all their daily struggles are becoming more and more capable by the day.

I would still have to say though, that for both of them (but especially Harley) – their biggest struggle by far would still be managing to cope and survive in the school environment. Over the years he has had some wonderful aides and therapists assist him and encourage him to reach above what he believes himself to be capable of and I cant thank them enough for that. We have seen incredible progress due to their commitment to helping him shine. Which is why I have made a big decision.

I no longer have children at home with me during the day and December marked the ending of the 12 month break I gave myself after my baby started full-time school. I am ready to re-enter the workforce but I am not interested in just earning a few dollars in a casual job. Nor am I interested in just doing whatever comes my way, no, this time I am the one with the passion and the go get attitude because I have decided to do something that I always said I would NEVER do.

I am going to go and study to be an education support worker (teachers aide). Because I want to be the one to help other kids reach their unlimited potential. I want to be the one to give the high fives when they achieve what they never thought possible and I want to be the one to give back what so many have given to my boys. I want to do something worthwhile and combine my knowledge of special needs as a mother with that of a classroom helper.

This isn’t big for some people, but if you know me and my aversion to sitting still and studying – it’s huge!

And my heart is in this one, so I know I will see it through.

And now that I’ve put this out there in big bad blog land……there’s no turning back….eeeek!

Dear Ann Coulter-this is who you insult.

No, I am not American, nor do I follow American politics but I have a lot of American friends with special needs children who have also been outraged by a controversy over at Twitter today after Ann Coulter tweeted this gem to the President

So wrong on so many levels.

Well Ann; These two beautiful boys of mine are both diagnosed with autism. Do you think they are retarded? Do you?

Not cool Ann. Not cool.

So do me a favour Ann? Think before you write something so revolting next time. There are so many people who you have hurt with that one comment.

If you feel strongly about this too: Come and join the blog hop over at Yeah Good Times.

Making a difference…

My Facebook status today read: 

 I just got a care package in the mail with a beautiful letter from my best friend’s Mum…….it’s so wonderful to be randomly blessed like that! Made my day

 And it DID totally make my day.

But you know what? The package wasn’t filled with chocolates, flowers or expensive gifts because Mrs M knows that this is not what I cherish the most, but instead it was filled with something much MUCH better than that!

It was filled with words, and it was filled with love….Lots and lots of both of my two favourite things

She has taken the time over many months to cut out articles from various magazines and newspapers and she has saved them up to send to me.

But these aren’t just random articles; they were all chosen with the specific purpose of encouraging me. Some are about ASD, some aren’t but each of them has a message of triumph through trials and average people achieving extraordinary things.

It really is so humbling to read this stuff and realise what a blessing my children really are.

Mrs M is ‘officially’ retired but still teaches primary school on a casual basis and in her letter she wrote of an incident that happened at school recently with a little boy the same age as Harley who is also on the autistic spectrum. My eyes welled up with tears as I read about how this little fella had a big meltdown and started kicking, punching, biting and screaming at her because he wasn’t coping. And this all occurred because he ‘thought’ he had lost at a game.

She wrote that she remembered reading in my blog that the best thing to do in situations like this is to stay calm, speak quietly and remove the child gently from the scene so that they can gather themselves and calm down. She remembered that trying to punish or discipline a child in circumstances like this is not only futile but so so wrong because the child is not being ‘naughty’.

She then wrote that later on when he came to apologise to her that she was able to convey to him that she understood that he wasn’t angry with her but that he aimed it at her because he didn’t know what else to do and she just happened to be there. She told him that she understood that his anger overwhelmed him and he lost control in the moment.

(On a side note: I hear of situations like this happening time and time again to children on the spectrum and it breaks my heart to hear them spoken of as “bratty”, “spoiled”, “naughty” or “badly parented” kids, ESPECIALLY when I hear it from teachers or professionals in the educational system who have clearly no personal understanding of ASD. I can’t help but wonder if these people actually lived with a family affected by the many manifestations of ASD for even a day, would it cause them to maybe change their opinions?)

But thankfully, that is not the case here.

I read the quote below on a Facebook page called Single mothers who have children with autism and  it’s attributed to Laura Tisoncik.

And it says:

‘The difference between high-functioning and low-functioning autism is that in high-functioning: your deficits are ignored and in low-functioning, your assets are ignored.’

Think about that: To put that quote in the context of the above story…..I’ll dissect it for you all.

ALL disorders on the autism spectrum both high functioning and low functioning share the exact same core deficits . It’s called the Triad Of Impairments and it is made up of:

• Social and Emotional Interaction
• Social communication and Language
• Imagination and flexible thinking

 Now Because the little boy in Mrs M’s story has Aspergers (which is high-functioning autism)….his deficits are ignored.

Put simply – people could look at him and see that he LOOKS normal and wrongly assume that he must therefore BE normal and place unfair expectations on him forgetting (or being unaware) that he has impairments in all 3 major areas of social interaction. So his deficits are ignored because they aren’t obvious.

And because I don’t have a low-functioning child – it wouldn’t be fair for me to write anything about perceptions or realities here because I will never understand it like a parent of one of these beautiful kids so I won’t even try.

So back to Mrs M….

I was so incredibly touched by her story. What a remarkable teacher she is and how excited I was that someone read the words of a simple stay-at-home Mum and didn’t disregard my advice because I am not university educated or professionally qualified in autism. I’ve always said that I may not hold any degrees or have any medical knowledge per say but I know my child more than anyone else on this planet and this THIS is why I continue to write about my family on the world-wide-web.

THIS is why I put us out there for all to judge in the small hope that even one person would learn that individuals on the autistic spectrum are worthy of the extra time and effort that it takes to learn more about how to best parent, live with and befriend them. 

Kids like mine are amazing but all too often they are misjudged, misunderstood and grossly underestimated.

There needs to be more Teachers, Doctors, Health Professionals and Community Workers out there like Mrs M who are teachable and willing to listen to parents. And I for one am not going to stop writing until I’m satisfied that I’m being heard

I seriously love this kid…..how could anyone not want to learn to understand more about autism.

Where to draw the line….

 I have been having a lot of conversations with myself lately to the tune of whereabouts to draw that line?

And the line I’m talking about is the one between sharing too much online and sharing just enough. And to do this all whilst still maintaining my integrity and that of my family. It’s a tricky concept for me because I’m naturally a very open person and I’ve really had to allow God to guide me in this area.

My natural instinct is to blurt out exactly what’s on my mind and then go back and mend fences later. Sounds ridiculous I know but I have only in recent years been able to recognise that split second moment between using wisdom and having a verbal diarrhea moment!

I am a lot wiser nowadays but apart from using my children’s real names and our exact location, I do try to share anything that may be helpful to another family if only to show them that they are not alone.

Because here’s the thing: When I first started out on this journey…..I had no-one to tell me what was ‘normal’ in ASD world or what to expect in the coming days, months and years and really honestly felt like I wasn’t going to make it. So I started googling and searching and finding other blogs, and realising that we weren’t the only parents ready to tear their hair out frequently.

And we weren’t the only parents who have forgotten what’s it’s like to sleep uninterrupted through the night and we certainly aren’t the only parents who would give anything for their child to just make a damn friend!

But imagine if everyone who had written these blogs had decided that they weren’t going to tell it like it really is? Imagine if they only wrote what they thought would make people comfortable and that which paints a picture of the perfect family all sailing along beautifully. Imagine if they had drawn their line a lot closer to “need to know” and far away from their honest realities.

Wouldn’t I feel like total crap then?!

It’s through relating to another person’s experiences and THEN seeing them come out the other side that we are encouraged.

I rejoice with my bloggy friends when they experience a breakthrough but I also cry with them when they are in the midst of hard times. It’s that balance of difficulties and progress that keeps drawing me back to my friend’s blogs time and time again. Because I can relate.

I was involved in an incident at my children’s school on Friday afternoon where another flustered mother watched as my child completely and entirely lost it and nastily told me that “All kids have days like that occasionally, you autism mum’s think you own bad days ”.

And she’s absolutely right! ALL kids have days like that it’s true. But where she got it completely wrong was assuming that we think that we own bad days.

We don’t think that we deserve your pity or sympathy any more than any other parent, but we do have more experience in dealing with these types of situations simply because we deal with them a lot more often.

Buy what I actually think is that whether you’re parenting 1 child or 7 children, whether you have boys, girls, typically developing or children with special needs – it doesn’t matter….parenting is rough!

But her comment to me was said in a derogatory tone that really threw me so I didn’t respond to her at all but walked away and came home and picked it apart in my head for hours.

I wondered if she is hurting herself as a mother and feeling overwhelmed and unappreciated? I wondered if she wanted someone to reach out to her and she didn’t know how to ask for help so she just launched into attack mode? It may have been the only thing that occurred to her at the time?

Either way – I’ve had enough time to process this now and try to see the situation from her shoes and I’ve got to say – it all looks very different now to how it did on Friday.

~~~

As of yesterday, my Wonderfully Wired Facebook Page reached 159 likes. which absolutely blew me away. I searched through the list and found that out of that 159, I only know 26 of them personally as friends and only 7 of them are family.

That means that 126 people are also travelling down a parallel road to us and understand exactly what it is like to live in this house. That’s 126 people that can relate to our ups and downs and that’s really REALLY humbling for me!

But this train of thought brings me back to the mother in the playground on Friday.

You see – I’ve been on Facebook (partly why I quit for now), I’ve mixed in mother’s groups and I’ve stood around and observed body language and facial expressions on groups of mothers as they interact with each other. And frankly – It’s all a big competition.

Not many women will ever dare to show their true colours to their friends. It is an unspoken rule that to show weakness is unacceptable and puts a target on your head.

I learned a new phrase by Pastor Steven Furtick at our bible study this week that has REALLY helped me to understand this concept better and has challenged me in a really good way!

“The reason we struggle with insecurity is because we compare our behind-the-scenes with everyone else’s highlight reel”

 

And that is EXACTLY why I will continue to write about our life as it really is.

Have a great weekend all xx

I’m not special.

It was a cold wet afternoon when I went to collect the children from school yesterday.

Mr Patient was away on business so we weren’t under any time constraints so I asked them each how they felt about the idea of going to the chocolate shop for fondue and hot chocolates to warm up a bit. They all jumped at the idea and I was confident that Harley would be ok with this kind of surprise. He’s been there before, he had prior warning and he knew exactly what he’d be eating.

We arrived and giggled as we ran through the rain together. The cafe was mostly deserted and so we headed to a booth in the corner and gave the waitress our order.

Everything was going wonderfully and I patted myself on the back for pulling off such a risky move. The hot chocolates arrived followed by a platter of sliced up strawberries, bananas, marshmallows, tiny pancakes and wafer biscuits to dip into the chocolate. I reminded Harley that he could have most of the banana and strawberries but nothing else because the other things contained gluten. He nodded and the other kids were all ok with that and so the dipping began.

But then, gradually ‘the signs’ started to appear. He deliberately pushed his mug across the table spilling some of the contents. He quietly started head-butting the arm of the sofa we sat on. Then the kicking of the table leg started, then the quiet growling, followed by hand chewing and I knew we had to get out of there ASAP, so I paid the bill and quickly took him away from prying eyes.  We walked over to the other side of the centre near the supermarket down a quiet alley and he leaned on me so hard that I kept losing my balance. He was flapping furiously and getting more and more upset. I tried to walk him to the car but he wasn’t having a bar of it.

So we sat down on the floor and waited.

And waited…..

And waited.

He was reaching a climax and started screaming at the top of his lungs and was starting to attract attention so I tried to pick him up and carry him but he went limp making this impossible.  I handed Ella my purse and asked her to go into the supermarket and grab the bread and milk that we needed and sat down on the floor next to Harley stroking his head. Eventually he was calm enough to carry so we headed for the car. He snuggled into my shoulder as he finally gave in and I could feel him relaxing a little. He was spent.

We pulled out of the car park and headed towards home with me chastising myself for being so stupid as to even suggest an outing in the first place. I KNOW that this is often the case but I so badly wanted to spend some “fun” time with the kids and I honestly believed that they’d enjoy it.

I started wondering if the trigger was the fact that he was only allowed fruit with his fondue so I asked him. “No, I don’t care about that” he replied.

And then it occurred that maybe running through the rain upset him but no, it wasn’t that either. I threw several other possible scenarios out there trying desperately to work out what exactly went wrong so I could learn from it and avoid it next time but I was running out of ideas quickly.

But then a little voice from the backseat piped up saying :

 ”I am NOT special”.

“Of course you are honey” I replied ”You’re very special, I love you to the moon and back, you know that!”

“Stop telling me that I’m special. I HATE it”  Came the terse reply.

I knew I had to dig a little deeper but I waited until we got home again before bringing it up again.

We had dinner, I bathed the boys and turned on the TV for Lucas. I went into the bedroom and sat down beside Harley hoping to finish our conversation from earlier on.

I pulled him onto my knee and started to rub his shoulders. He relaxed so I started speaking:

“Honey, You know how you told Mummy earlier that you’re not special” He tensed up ”Yes” he said with an eye roll.

“Well, Mummy was sad to hear that, do you want to tell me why you think that?”  

“Because I’m not a freak you know” he answered.

“Nobody thinks that mate, what made you say that?”

“Because EVERYBODY keeps telling me that I’m special but what they really mean is that I’m different. Weird and different and I hate being different. I want to be like everyone else”. 

“But I don’t think you’re weird. I think you’re amazing. I think you’re smart, and kind and generous and…”

“Special” He answered for me.

“No, I wasn’t going to say special but yes. You are special to me. You’re my boy, my treasure, my precious son” I countered.

“Well then, call me precious but NOT special. Special means dumb and makes me feel like an alien” He spat out.

“Everyone at school tells me I’m ‘special’ “ he says making the quotation marks in the air with his fingers. ”Every time I have to eat a gluten-free cupcake, every time I need to go to another classroom, every time I need something explained more people call me ‘special’ and I really hate it”.

I was shocked but enlightened. So I spoke to my friend Lisa about this on a Skype call not long after and she opened it up further for me to understand. (For those that don’t know – Lisa is an adult with aspergers and has opened a doorway to amazing insight that I would have never had access to before meeting her ) She told me to think of “special-ed”, “special needs”, “special olympics” “special services” and I started to understand. I could now see that the use of this word was almost insulting to those high enough on the spectrum to understand the connotations that are unintentionally connected to it. It isn’t intended to be nasty, but it does tie together all the thoughts and emotions that Harley is experiencing at the moment as he realises that he is wired differently.

And obviously Harley has reached an age where he is conscious of his differences and dislikes being singled out for them. He voiced to me that he just wants to be like everyone else but what I ‘think’ he means it that he doesn’t want to stand out as ‘different’.

So my task now is to try to find another way to build him up and encourage him without making him feel like a weirdo.

I still consider myself to be a “special needs Mum” because, well…I am! But I will be careful to not add to my boy’s sadness from now on.

Anyone got any great advice?

What I’ve learned these past few years.

Sometimes, no matter how hard you try or how much work you put in, there are going to be days that are harder than others.

That is the nature of autism.

It’s neither good nor bad. It is what it is.

And when you love someone with autism, you will keep putting one foot in front of the other until the hard times pass because the joy that is at the end is indescribable – the rewards are priceless.

And that my friends; makes all the harder times worthwhile.

What has autism taught you?

Where do I go from here?

When you read today’s post – please keep in mind that I’m not looking for sympathy. I am working through this in my own way by writing it out. I am not angry, or depressed or complaining, but I have found myself to be at a bit of an impasse and not knowing which direction to head in.

I  love my kids and am fiercely protective of them but on occasion…..there are parts of their brands of autism that drive me stinking crazy. Hence this post.

Cyber hugs will be gratefully accepted as will heartfelt advice but criticism will not be published.

Ok. Ground rules laid out, let’s begin.

Most of you know that both of my boys are diagnosed on the autistic spectrum, and most of the time I’m ok with that. But if I’m being completely truthful with myself, I can admit that a lot of the time I also feel quite ripped off.

And there’s another emotion circling overhead that looks a lot like jealousy or anger but I’m refusing to admit that either of them are possibilities. So for now they will remain known as ‘the unknown factors’.

OK  ;)

And it’s not so much that I’m ‘jealous’ of the normal families that I seem to see everywhere – because I’ve mostly dealt with the fact that this is our life and that it’s ok to be different, but surprisingly I’m MORE ‘jealous’ of those families that only have one child with autism.

I’m ‘jealous’ of the fact that they can focus on that child’s needs alone and of the lengths that they are able to go to, to ensure that their child’s needs are mostly met.

I read stories about new techniques that they’ve learned and methods that parents have implemented and wish that there were some way that I could make them work for us. But I know that I can’t put one child’s needs on a higher priority than the other and I know that I am not able to always to meet both of their needs at the same time.

Sure, I join these parents in rejoicing when their child makes progress or learns something new but there’s a part of me that inwardly cries out: “My child could possibly learn that too if he were the only one I had to put the extra time and effort into”.

Because let’s face it. There’s no doubt that raising children is hard work full stop.

And raising multiple kids kicks it up a level. But raising children with a special need kicks the difficulty factor up a helluva lot of notches.

So trying to foresee and plan for 2 kids with completely opposite high needs – is nothing short of bloody ridiculous.

Most afternoons in the car on the way home from school – there is screaming and/or crying.  And most of these episodes can be attributed to the two boys driving each other stark raving MAD! The problems arise because they are both needing to escape from their brain overloads but because their sensory profiles and emotional needs are polar opposites – they do what calms them in completely different ways.

Harley goes into a trance like state where he shuts down and sits quietly with his arms wrapped up around his bended legs. He finds comfort from gently rocking back and forth and gazing out the window. I have learned not to ask him about his day or try to converse with him until he has had his down time and I know he will come to me when (and if) he’s ready to talk later on.

And this would be great if he were able to do this in peace each afternoon. Ella and I would gladly leave him be until he was ready for company. If he could spend the car trip home defragging from his day – I’m sure that our entire afternoons would be a helluva lot smoother.

But our problem is that Lucas also needs to defrag as well. But he gets his release from vocal stimming. He hums, makes throaty repetitive noises and flicks his fingers over and over again. He talks non-stop in boring monologues and pointless rhetoric.

And as you can imagine…..all of these…drive….Harley…..CRAZY!

So then the tears begin.

The tears quickly turn to moans, then to thrashing in his seat and eventually he screams at Lucas with his hands over his ears begging him to stop making those noises.

So what should I do?

Whose “need” is more important?

Who do I tell to change ?

Do I try to stop Lucas from making noises (that really are quite harmless) for Harley’s benefit?

Or do I try to teach Harley to ignore it and give him headphones to wear instead. (Which I have done many times).

But then, there’s the part of me that wonders if I should be doing a better parenting job. I wonder if I should be using situations like this to teach them both a thing or two about life. Should I use the moment to teach Harley that there will be many times during his life where things  will annoy, frustrate and irritate him but that he needs to learn to suck it up occasionally. Or should Lucas be taught that his noises are irritating to other people and that he needs to control himself better and point out that people in the real world will tell him to shut up if he continues that into adulthood.

Well I suppose the time will come that both of these issues will need to be addressed, but then while my own brain is processing these thoughts, my mother heart takes over and tells me that it’s my job and responsibility to provide what they BOTH need and give them the grace to wind down from a busy day in their own individual ways.

And then the guilt begins.

Eventually my head starts to hurt and I react like I did today: Today it all got too much for me, so I pulled the car over on the side of the road, turned off the ignition and climbed out of the car for ten minutes to let them fight it out alone. I stood beside the car with my back turned to them just taking deep breaths and I counted to 100.

I totally bailed on them both.

And I did it because I simply didn’t know which child to help. I couldn’t prioritise either of their needs and problems and I couldn’t work out which decision to make. All I knew was that I needed to get as far away as possible from the chaos that was unravelling right before me and that I needed to escape immediately.

Anyone that has ever tried concentrating in traffic whilst children scream, throw things and kick the back of your seat will know that in situations like this, escape is not only highly desirable but also entirely necessary.

I did what I had to do to prevent me from having a car accident. And I would do it again in a heartbeat.

I’m still left wondering: How the hell do I fix this?

And why doesn’t anything seem to work?

I’m sure that both of them would be AOK if they didn’t have each other. If I only had Harley, I could provide that quiet safe place. If I only had Lucas, I could allow him to make the noises he needs to and run and bounce to his heart’s content. But I wouldn’t want to even imagine life without either of my precious wonderful boys.

But this isn’t just about a car trip each afternoon. As my friend puts it – I am living in a constant combat zone.

If it’s not the car, it’s the dinner table. If it’s not the dinner table, it’s in the bathroom with gurgling and teeth cleaning noises. Or the trampoline and the joyful yelling that goes along with it, or the TV noise levels, or the volume on the iPad. We leave one combat zone (the car) each afternoon to leap straight into another one that’s equally as exhausting and demoralising. And it continues well into the sleep combat zone.

And then I’m back to my original thought: Am I jealous, angry or is it something more?

Where do I go from here?

Obsessed Or Overly Pro-active?

I was sitting chatting with a friend in a café catching up.

We hadn’t seen each other for a while and the conversation was moving along wonderfully. But suddenly she leaned over and said to me gently: “You know you’re kinda obsessed with autism right?”

I raised my eyebrows at her and feigned ignorance and replied: “Really? Do you think so?” While batting my eyelids at her.

“Well….yeah” she replied. “I mean, you write a blog, you have a Facebook page for the blog and all over your personal Facebook page it’s so obvious that you’re an autism Mama. You talk about it A LOT. It’s kind of an obsession for you isn’t it?”

I went home and thought long and hard about this conversation. She certainly had some valid points and I agree that it is a huge part of my life but I wondered about the word “obsession” and if it really was a fitting description. I wondered what exactly obsession means.

So I looked it up

obsession (əbˈsɛʃən)

— n 1. psychiatry a persistent idea or impulse that continually forces its way into consciousness, often associated with anxiety and mental illness

Isn’t that interesting?!

A persistent idea. An impulse that forces its way into consciousness.

Well!….. Yeah, autism IS persistent. It IS sometimes impulsive and a lot of the time it does create massive anxiety in both Harley and in me.

So does that mean that I’m “obsessed” with autism?

Well…whilst I can certainly see how it would appear that way…no, I don’t believe that I am ‘obsessed’. Extremely dedicated, interested, pro-active and keen yes, but obsessed? No.

Sure, it is a huge priority for me to continue to learn everything that I can about autism because it’s important to me to be able to provide exactly what my boys need. I want to be their safe place and their interpreter and translator. And for that to be effective…I need to know as much as I can about what I’m actually dealing with.

I’ve seen it too many times….the well meaning people who try to communicate with the boys but are clearly uneasy around them. And the boys have like a sixth sense with this stuff. They know when someone is belittling them or uncomfortable. They are really smart kids. They may not be able to read body language or facial expressions effectively but they instantly know who gets them and who doesn’t.

And this is why it’s important for me to understand as much as I can about autism and especially how it affects both of the boys differently.

So maybe I do talk about it a lot. I know that a lot of the conversations that I have with people somehow end up being about autism, but when you’re living something 24/7 and rarely get out…you can see why.

Other parents have no qualms sharing about their child’s latest academic or sporting achievement. Why can’t I proudly announce that my 5-year-old actually drank out of a straw without choking. Or boast about my 8-year-old who wrote his first legible sentence in grade 3? How about doing a happy dance because HE HAS A FRIEND! Because they are only small things for parents of typically developing children. But for me and thousands of other ASD parents….these things are huge and worth celebrating! These are things that we always assumed our kids would also do at the age appropriate times but had all but given up on them ever occurring at all after their autism diagnoses… We go on and on about these seemingly small achievements because we KNOW that they are massive leaps of progress in our worlds. It may appear to be a tad obsessive but for us – they are life-changing.

But another thing to remember is that autism isn’t exactly like having a broken leg. I mean, if you were to break your leg in a sporting incident…..it’s something that would inevitably come up a lot in conversation.

People see the plaster cast and they ask questions. They want to know all about the accident. Where did it happen? When did it happen? How did it happen? Can we sign your cast? There are Facebook status updates about it, a few cute photos and people continually ask you how you are managing now that things have changed.

But autism is a life-long diagnosis. And we mamas know that we’re in it for the long haul. Some autism Mamas don’t know that their child will actually be able to live by themselves one day, they know that one day they will no longer be here and their child will need a full-time carer because they are unable to take care of themselves. They lay awake at night worried because they just don’t know what’s in their child’s future.

Autism doesn’t simply disappear after a few uncomfortable months. And that scares a lot of people. But because we know that this is a lifetime commitment for us, we throw ourselves into being the best mother that we possibly can. Some still call that obsession and that’s ok, but when your 8-year-old son comes up and wraps his arms around your waist and hugs you tightly, you will happily wear that label.

And when he says: “ Mum, I know I’m harder work than regular kids. Thank you for taking such good care of me, I love you”…. You can handle being called just about anything in the world! Because moments like that make you realise that it’s all more than worth the tears, sleepless nights and frustrations and you throw yourself right back on the frontline with passion.

Obsessed or not. I’m not backing down.

¨ When your child is diagnosed with cancer, neighbours stop by your home bringing pre-cooked meals, hugs and support. When your child is diagnosed with Autism, families who see you in the supermarket will slip away down another aisle.”

Dr David Feinberg 2007

Someone broke my baby.

There has been a huge shift around here lately. And it’s really thrown me. I’m not sure what exactly to do so I’m gonna write until I can get my head around it and try to make some sense and figure out a game plan.

Feel free to click somewhere else if you’re not interested in my ramblings. I wouldn’t blame you!

~

Oh? So some of you stayed! I’m impressed!

I’ll go back to the start of the story:

Exactly five years, 8 months and 2 weeks ago we welcomed out second little boy Lucas into the world.

He was unplanned but a really beautiful surprise. He was an incredibly good baby and an absolutely treasure. I admit that I was nervous carrying him for several reasons but mostly because I was genuinely scared to have another boy.

You see, Harley was an absolutely impossible baby with more issues than you could poke a stick at and still at almost 9 yrs old doesn’t sleep through the night.  Or cry any less, or eat any more or behave any better than when he was a toddler.

Ugh.

I remember the day clearly. I was at my 20 week ultrasound. And when the sonograper told me that I was carrying a boy, I burst into tears, NOT because I was disappointed and NOT because I didn’t want him but simply because I just didn’t think that I could possibly go through all of that drama again. The very thought of dealing with 2 completely out-of-control little boys just scared the pants off of me! (Harley was still undiagnosed at the time).

I have always said that out of the 2 boys, Lucas is the easy-going and unflappable one and Harley (although an absolute treasure and blessing himself) has been the almighty handful.

I’ve written MANY times that despite both of the boys sharing a diagnosis of Aspergers Disorder, they couldn’t be more different. Lucas has flourished and shone from very early on and Harley has struggled with extreme anxiety issues, massive sensory issues and is way more aggressive by nature.

But that has started to change lately.

These days – Harley is getting up in the mornings, making his own breakfast, eating it and getting dressed in record time. He has finally worked out that once everything is done – he has more time to do the things he enjoys before school. It’s been an absolute joy to see him so compliant and has given me hope for the future after all the years of heartache that he has provided.

And just when I started to count my chickens…. I found plenty more just waiting to hatch.

Because nowadays, Lucas has taken up the baton and has picked up where Harley left off.

We are running the same frustrating marathon that we ran with Harley at the same age and I gotta tell you – it absolutely sucks.

Lucas is now the one lying thrashing on the floor screaming, kicking and flailing his arms every morning. He is refusing to eat breakfast, making his body like a dead weight so he can’t be picked up to be dressed and hiding underneath his bed and refusing to comply with anything. Cleaning his teeth needs 2 adults . One to hold him down and prise his mouth open and the other to block their ears with their spare hand and shoulder to drown out the screaming and try to wrangle a toothbrush into the tightly clamped shut jaw.

Mornings have become quite a drama and it’s taking me almost and hour and a half to get them out of the house these days. He is crying more than I’ve ever seen him cry and is coming home in the afternoons like a bear with a sore head.

It’s like he has had a complete personality change.

I went and spoke to his lovely teacher last week and asked her if she’s noticed anything different in the classroom. And predictably she said that he is doing really well. ( I expected that *sigh*)

In fact, she said that he is on a reading level that is a lot higher than most kids his age and that he excels at reading and writing. I stood there with my mouth hanging open and was shocked to say the least since I’ve watched Harley struggle with every.single.aspect of school since day dot.

I’m not used to hearing things like that. Usually teachers tell me that “I know he’s trying but…..” or “He needs to work on….”.

So to be told that your child is excelling should feel really good right?

Well maybe if we weren’t copping the brunt of his exhaustion and frustration at home.

I think he does actually love school but it is absolutely draining him. I think that it is a case of the typical aspie habit of keeping it together at school and losing the plot in a big way once he’s safe at home again. I’ve seen this all before.

But whatever it is, I want it to stop. For his sake as well as ours. I want him to not only cope but to thrive and flourish. I’m thrilled in the progress we’ve made with  Harley but wishing that I could enjoy it more without this hanging over my head.

I’m too tired to do this all over again for God only knows how long. I feel like I’ve done my time, and I’m stamping my foot and pouting. It’s just not fair.

Lucas used to be my placid side kick. He was my take anywhere child. He was a reminder to me that I wasn’t a crappy parent and that Aspergers was more than out-of-control behaviour and aggression.

But then I sent him to school and he came home all changed.

Someone broke my baby.

Teaching children about tolerance.

Anyone that has been reading this blog for a while will have already have worked out that I am all about raising awareness for autism. And I spend a lot of time trying to teach tolerance so that my own children and other children and adults on the autistic spectrum can be more readily accepted into society.

It is important to me, and that’s why I put so much effort into advocating for my kids. But I am also fully aware that tolerance is not just something that everyone else needs to learn. It’s something that I have had to learn personally and something that I definitely try to teach my own children too.

Lately I have had the perfect opportunity to be able to teach my children tolerance from the other side of the fence because my Mum has been living here for almost 2 weeks now, with another few more to come. She is in a wheelchair due to a bad fall in her home and a badly broken foot. She needs to have a knee replacement on her “good” leg so crutches or a walking frame aren’t possible and her own home is filled with stairs. Her only choices were hospital, a respite home or here.

Naturally she chose to be with family. (Like I would have given her a choice!)

It all happened so quickly that I only found out the day before she arrived that she was coming the next afternoon, so I didn’t have very long to prepare the boys for her visit.  I hadn’t anticipated it being a problem because they love and adore my Mum and she is one person that a surprise visit from wouldn’t rock their boats too much. So I put it to the back of my mind and set to work preparing her room and making the house a little bit more wheelchair friendly.

I told the kids that afternoon and they were very excited that she was coming.

Well…..they were. Right up until I told them about the wheelchair.

I wondered why this was disturbing them so much and I tried to talk to them about it with no success. Harley was edgy and moody and not at all himself the next morning. He knew Grandma would be there when school finished and he wasn’t nearly as excited as he usually is.

I wondered if he was really coping as well with the surprise visit as I had first imagined? And if I’d made the right decision? My boys don’t handle change very well (as is part of their diagnosis) and it crossed my mind that I may have bitten off more than I could chew. Add to that the fact that Mum was extremely hesitant to come in the first place due to the fact that she felt she was increasing my already heavy workload, but I assured her that it would be a cold day in hell before I would let her go to a respite centre and that I WANTED her to come. (I wasn’t going to take no for an answer anyway )

***

 My fears were allayed as soon as the boys saw Mum and talked with her. It took a few minutes of observing her from afar and hesitating to get too close but once they realised that she was ‘safe’, their trepidations vanished completely.

But it wasn’t until dinner that night when Mum’s friend **Mrs Giggles who had driven Mum here, dropped a thought into conversation that had honestly never even occurred to me at all!

She offered up the possibility that perhaps the only “visual” that the boys had in their heads of a wheelchair was someone with a severe disability or an obvious developmental delay that they may have seen at a shopping centre. They didn’t have the life experience to draw on to be able to imagine what to expect with Grandma in a wheelchair. They had no previous images or memories to draw on and this idea suddenly gave me a haunting image of my dear Dad.

Not long before Dad passed away,  we all went out to a local pizza place for dinner. The cancer had spread to Dad’s bones and it was agonizing for him to even walk and the solution was for him to walk while pushing a shopping trolley (cart) into the restaurant because we didn’t have a walking frame. He winced in pain with every step and he had already started to fade away. He was a shadow of his former self and it’s one of the last times that my kids saw him alive, because a few short weeks later we were attending his funeral.

So for Harley – seeing someone unable to walk had a frightening end result. Maybe he thought that Grandma was going to die too?

I remember Harley was asking me the night before she arrived if Grandma would still be able to talk with him. And his biggest concern was that she wouldn’t be able to give him one of her famous back rubs. He couldn’t get his head around the fact that she was still going to be ‘Grandma’. He was troubled and very very nervous until he saw for himself that the wheelchair wasn’t ‘who Grandma is’. And this was a green light for me. I knew that something had clicked for him and I wanted to explore this with him further. 

I’ve  since had the opportunity to sit down and chat with Harley about diversity. We’ve discussed how people are still people even if they look, sound or act differently and he seems to have a better understanding. We’ve chatted about blind people with guide dogs, people who need a wheelchair for whatever reason, people with walking canes, crutches and frames and he even brought up the example of the child that we often see at the local shopping centre who is about 14 and still needs to wear a bib.  It was a fabulous segue into learning about people with less obvious disabilities like Aspergers.

And Grandma?…..well Grandma may not be able to walk, but she can still play board games, tickle, cuddle and rub backs, chat  (or listen to monologues) , read books and give rides on her lap in the wheelchair up and down the hallway!

Harley told me today that Grandma is still fun and exactly the same as before and this really made my heart swell because I knew at that moment that he gets it.

He has learned a wonderful lesson.  He’s learned that it doesn’t matter what you look like, it matters what’s on the inside. He’s learned that people come in all kinds of packages and that different is not wrong.

And as a mother – that makes me super proud.

**The pseudonym ‘Mrs Giggles’ comes from my wonderful relationship with her and the fact that we always seem to giggle when we’re together..I LOVE her)

Is it just a boy thing or is it something more?

Sometimes I am unable to discern the difference between regular ‘boy’ behaviour, normal sibling rivalry and behaviour that is typically and consistently attributed to having an ASD.

Because both of my boys are diagnosed with Aspergers, anytime that I see them BOTH doing things that I never did as a child – it’s too easy to assume that it’s an ASD thing.

But then I talk to other parents of typically developing boys and realise that their son(s) do some of these things too and I occasionally feel like a fool because it’s more than likely just a boy thing and I’ve made it into much more.

Or have I?

I’ve discovered that as mothers of special needs kids – we deal with all the same things that regular parents do every day…..and then some. Because everything is multiplied by thousands. And I mean EVERYTHING.

We experience much higher highs when we celebrate what is considered to be a small thing to an average parent – much lower lows because our kids struggle with basic daily tasks and HUGE swings between the two extremes daily.

Take for example: running away. Other mothers of boys have told me that their sons often wander off in shopping centres and have the urge to touch EVERYTHING in sight. Their sons also have trouble keeping their hands to themselves and they often misbehave in a similar way that mine do when we’re out. It’s just a boy thing they tell me. I hear the stories of how they remember the days when they were unable to take them ANYWHERE and how exhausting it was!

But they usually follow with comments to the tune of: “But thankfully he’s outgrown that now”.

Harley is 9 this year and still runs away regularly. He obviously hasn’t outgrown it and isn’t showing any signs of growing out of it. Because for him – it’s not an age thing. Nor is it a “boy” thing. When Harley runs off – it’s because he is terrified of the noises, the bright lights, the crowds and the brain overload that all of this stimuli causes. He will run away so that he can hide in a clothes rack or to sit in a far away corner rocking backwards and forwards crying because his sensory system reaches overload so much quicker than that of the average Joe.

And he doesn’t just instantly stop crying once removed from the situation either. The tears, aggression and emotional outbursts can last for literally hours after the event.

And when Lucas wanders off  – it’s because he is drifting along in his own little spacey world and is completely unaware of his surroundings at all. He doesn’t live in the moment and doesn’t realise that he has moved away from us.

My boys don’t run off to be naughty, they just have an uncontrollable need to escape whatever is that is sending them in meltdown or they are not living in the same realm that the rest of us are!

And as for punching up their siblings: Well, that’s just a boy thing too isn’t it? – Boys are naturally a lot more rough and tumble, and a hundred times more active than their female counterparts, so I’m not dealing with anything that they don’t all encounter daily either am I?

Well maybe not. But when you see your son going pale and crying till he almost vomits from the mental exhaustion that a school day heaps on him, the lashing out and physical attacks on his brother are often a sign of much more than just a boy being silly and rough-housing with his little brother. When he is this overloaded, he is not in control of his body and the punches are his way of releasing some of the pent-up emotions from just BEING that day.

And what about boys refusing to do homework because they would rather play than concentrate and sit still?

Sure – I know many boys who struggle to do this, but when you throw sensory issues, brain overload and mental exhaustion from trying to be what society expects all day instead of who you really are into the mix….than it’s likely to be much more than your child simply refusing to do what they’re told.

And I can imagine a lot of you sitting screaming at your computer monitors now: WHY DO YOU EVEN CARE???
DOES IT REALLY MATTER WHETHER IT IS A BOY THING OR SOMETHING MORE???

And I totally understand that it may seem that I am making a mountain out of a molehill here, but it’s important to me to define the differences. I was told only today that I have got to stop using Aspergers as an excuse for my son’s bad behaviour and that I need to teach him how to behave better.

Yes – I held my tongue but comments like this from people who don’t walk in our shoes are exactly why I write controversial blog posts like this one.

Because: that kind of perception is damaging and hurtful to parents of children with “invisible” disabilities such as Aspergers as it belittles our struggles and invalidates our achievements and successes.

I read recently in >>THIS<< fabulous post that it’s like they’re saying to us that autism isn’t real. When we are spoken to in this way – we are being told that we are attention seeking super emotional freaks of parents who should just sit down and shut up.

So let me take this opportunity to point out that I am not the least bit interested in being pitied and I’m not writing this to extract sympathy from anyone, but I want people to stop downplaying the struggles that special needs parents have with their children by trying to explain it away as something that everyone deals with.

And I also want to know the differences because: If it’s something that is “just a boy thing” I know that I have little control over it, but if it happens to be an ASD thing – I can research it, work on it and teach my boys the life skills that they will need to not only survive this big bad world but to thrive in it.

And I need to know for my own sake as well. Because I need to know that not everything is my fault. I need to know that sometimes – its ok to collapse under the weight of something that I have absolutely no control over. I need to be proud of how damn hard I really am trying here. I need to be able to sleep at night knowing that I did the best I could with what I have.

Because as I wrote earlier – special needs mothers do all the stuff that regular mothers do as well…..but then there are volumes of extras that are also required on top of that just to be able to even function.

But don’t get me wrong here: I certainly don’t OWN exhaustion or frustration and I know that every mother struggles from time-to-time with their children on some level. And I’m not trying to take that away from mothers of typically developing children because I don’t for a second think that any of you have it easy either. But I know from living it personally that mothers of children with special needs feel like throwing in the towel almost every.single.day.

For us – a good day means you were only kicked once. Or we only had to throw out 2 meals instead of 3. Or that your child didn’t punch their therapist. And a great afternoon might mean that you child only screamed for 1 hour over their homework instead of 4.

Most of us would love to be able to have only the occasional bad day or moment. But we were never given that option. But we don’t want our efforts and struggles reduced to a simple shoulder shrug and a throwaway comment.

That’s all I ask

Placing down the load.

So there has been a lot going on behind the scenes here lately. I’m not ready to share any of it publicly but I wanted to blog a beautiful inspiring email that I was sent by two different friends last week that really encouraged me.

A lot of you may have read it before, but it is so good and applicable to parents of special needs kids that I’m going to share it here again for those that may not have seen it…

A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, ‘half empty or half full?’… She fooled them all … “How heavy is this glass of water?” she inquired with a smile. 

Answers called out ranged from 8 oz. to 20 oz. 

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it.  If I hold it for a minute, that’s not a problem. 
If I hold it for an hour, I’ll have an ache in my right arm.  If I hold it for a day, you’ll have to call an ambulance. 

In each case it’s the same weight, but the longer I hold it, the heavier it becomes.” She continued,

“And that’s the way it is with stress.  If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.”

“As with the glass of water, you have to put it down for a while and rest before holding it again. When we’re refreshed, we can carry on with the burden – holding stress longer and better each time practiced. 

So, as early in the evening as you can, put all your burdens down. 
Don’t carry them through the evening and into the night… Pick them up tomorrow. 

So for now, I’m placing my glass of water down for a rest to get refreshed and to ease my load. It’s gotten far too heavy to hold for extended periods and I need God’s strength more than ever.

I hope all of you realise what a wonderful and sometimes thankless job you are doing and that you are not alone.

Fi x

A brand new ending.

Everyone told me I’d be sad when my youngest child Lucas started school.

Well ok, I am sad, but not for the reason that people expect. Sure I miss him but I’m not distressed or pining for him. I’m excited for him and am thrilled to be able to finally have a minute to myself to take a breath.

No-I’m sad because right now it feels like I’m watching a movie on repeat.

But because I’ve watched this stupid movie before and I know how it ends, I know that short of walking out of the room – I’m going to have to watch it to completion in wide screen view whether I like it or not.

It’s like an annoying case of déjà vu.

And this stupid movie is all about Lucas’ coping mechanisms for school – It seems that they are on red-alert ALREADY! And it’s only day 2.

I really thought we would get a LOT further in than this.

Sigh!

One of his teachers approached me this afternoon and asked how he went last night at home. I sighed and admitted that he was a complete basket case. Teary, emotional, cranky, tired and unapproachable but I didn’t think anything of it because I assumed that all Kindy kids were feeling exactly the same way.

Weren’t they?

But I didn’t tell anyone this.

I told everyone who asked me how much he loved his first day of school…and he did, but he didn’t cope very well.

So why didn’t I admit it?

Well…because I didn’t want to be THAT mother again.

I didn’t want to play the stupid flippin’ autism card this early in the piece.

I’m sure everyone is sick and tired of hearing about the hassles we have had with Harley and I wanted SO BADLY for it to be different this time. I deserve that at least don’t I?

It seems not.

This morning after the bell rung, the children all sat in the quadrangle and were taken off into their new classes one by one. All of the kindy, year 1, year 2 and year 3 kids had gone to their classes but I spotted Lucas (because he was the only one holding a stuffed monkey) sitting in the quadrangle amidst the much bigger year 4 kids looking lost and confused.

I alerted the teaching staff and he was walked to his class. I should have known then that the day started on the back foot.

And this afternoon, the teacher who summoned me mentioned that Lucas had a lot of trouble settling today. He didn’t understand or follow all of the instructions, he chewed relentlessly on anything that he could get near his mouth and he seemed overwhelmed and bewildered by the kids surrounding him.

She said that he had a few teary episodes but other than that he did great.

My heart sunk right into my shoes. This was all sounding waaaaay too familiar for my liking – It’s the same dumb movie that I have been watching for the past 4 years. Only this time it’s an updated version. This time it has extra added special effects. 3D in fact – the 2012 version.

I started to fret but then made the decision that I absolutely wasn’t going to have this. It doesn’t have to be the same movie replayed time and time again and I decided then and there that I refuse to be just another passive movie patron anymore.

Not if I had anything to do with it.

It was a real light-bulb moment for me when It dawned on me that I know the original and only author of life.

The alpha and Omega. The beginning and the end.

My God is the Director AND the Producer of everyone’s life movies and I know Him personally….I’m telling Him to go back to the script writers and demand that they change the stupid ending. I’m not having another drama on my hands. This one’s going to be a feel-good movie with a lot of comedy for good measure and a happy ending. People are going to talk about this movie for ages. It’s going to be a family friendly movie with a ‘choose your own adventure’ clause. And it’s going to be AWESOME!

None of this ‘woe is me’, ‘my poor child is destined to be a mess’ crap. This is going to be a great year for all of us.

Ok. So that’s settled.

Next task : Search for the stupid oxygen mask that I seem to have momentarily misplaced!

Tidal waves.

I find it disconcerting to say the least when my child has a bad day, because a bad day round here doesn’t look the same as a bad day anywhere else.

No.

It looks like an angry tidal wave that is threatening to wash away everything in its path. You can’t escape it and there’s not a lot to grab onto to steady yourself anyway.

Everything seemed to be sailing smoothly this week until yesterday when Harley came home and flew into a rage that was completely unprovoked, unpredictable and unexplainable. As he ran through the house pushing things off shelves, kicking doors and walls and banging his own head repetitively on the cold, hard tiled floor, we stood by watching him helplessly knowing that we had to let him ride it out.

We knew that it was something big that had caused him to react this way and we also knew from painful experience that the underlying reason may not be something that would be discovered easily.

Although he appears to be in the fight response when he is like this, his inability to form coherent words when he is in this distraught state of mind causes him to cross over ever-so-slightly into flight mode. He mentally shuts down and his eyes glaze over as he searches frantically for a safe place. He needs to escape his own brain and he cannot rest until he does. He has been telling me in the days leading up to now that his brain feels fuzzy and that his head is telling him to stop spinning. I should have heeded this warning….

Because his cognitive functioning skills are non-existent at times like this and he lacks any hint of social appropriate behaviour when his brain overloads itself, I cannot do a darn thing for him.

He just needs to “get it out” and does so however his mis-firing brain tells him to do so. Appropriate or not.

But there is ALWAYS a trigger. It’s all about the three R’s. The rumbling, rage and recovery stages.

I failed to recognise the rumblings and was punched in the metaphorical face with the rage cycle instead and waiting until recovery arrived was my only choice. The only thing I could do was ensure that he was safe in the process and that his siblings were also kept out of his path until the storm had passed.

Eventually he fled to his bedroom and lay down on his bed thrashing and kicking until his body was so exhausted that he fell asleep. I went and laid down beside him and stroked his sweaty forehead and prayed over him until his body stopped fighting and surrendered to rest.

As an autism mother it is one of the most difficult parts of my job. It is draining, it is heart-breaking and nothing makes you feel more helpless than not being able to comfort your child when his thoughts are attacking him and he literally rips and scratches at his own head trying to get some peace.

But also as his mother – one of the most rewarding parts of my job is seeing him breakthrough and make progress.

He only slept for a very short time. Just long enough for his brain to process whatever it was that had triggered the tsunami and allow him to return to the world that confuses him so much.

He woke up and found himself in my arms and gave me a weak smile. His tiny voice shook as he shared with me his heartbreak.

And right then – my heart broke all over again.

He is being teased: He is being called a “baby” because he claims that his best friend is his teddy bear. He is being called a “Mummy’s boy” because he flew into my arms at school excitedly yesterday and gave me a big kiss and told me that he loves me. And he is being told that he plays silly games and talks funny.

Um yep…

 Socially inappropriate behaviour not in line with his biological age??   Can anyone say “ASD”?

Back to the freakin’ neurotypical teaching drawing board. It’s not fair. It’s just not fair.

Urgh…

Stupid Mask.

 Last night, I received a Facebook message from a friend and as I read it, I became very sad.

My friend is having a really rough time at the moment and it absolutely broke my heart to read her words. I know her situation and also know of the absolute ick that she is subjected to on a daily basis, and it’s really not fair at all.

If I could take the crap away I would do it in a heartbeat. But unfortunately, it’s not that simple.

I don’t walk the same road that she does, I walk on a parallel but far less grueling one. And whilst I could never honestly say: “I know what you mean”, I can empathise and offer a shoulder.

Sometimes our different roads cross over and sometimes they both reach the same dead-end at the same time but mostly, they are very different roads but are both headed for the same ultimate destination.

What we do have in common is that we both have more than 1 child with special needs and like me: she is exhausted. My friend is tired both physically, emotionally and mentally. She is spent and drained and expected to survive with so much more than the average Joe but she does it without complaint.

She asked me in her email how I keep picking myself up? She wanted to know what my secret is? How do I keep going? How do I stay on top of things?

I actually laughed out loud when I read that, but I also cringed. I cringed because I realised that she obviously didn’t know my deep dark secret:

She didn’t know that a lot of the time I barely cope. I don’t even come close to coping, but I have learned to put on the correct mask for the occasion.

You see, once I’d figured out that people don’t handle exhausted Fiona or emotional Fiona or falling on the floor in a heap of uncontrollable tears Fiona, I had to make a choice.

I had to choose whether to reveal my all and risk rejection or only show the happy, go lucky, cheerful, smiling Fiona.

I usually go with the latter because it’s more of a sure thing and I am usually always received much better that way. I’m less confrontational and less needy.

But any sign of me slipping or having a bad day - a lot of people run for the hills. I know that I am simply too hard to handle when I’m like that so I hold no grudges.

And instead I present the coping, altogether woman who people expect and no-one gets hurt.

Right?

Wrong.

*I* get hurt.

My friend gets hurt and many many other mothers get hurt because we feel trapped in our own suffocating worlds.

Ultimately our children also get hurt because they are left with a mother who has no self-worth, no drive and absolutely no will to go on. Feeling like you can’t depend on anyone is the pits. Bottom of a deep well type pits.

Through the years, I’ve learned who I can and can’t reveal my true self to. I now know who can take it and who can’t and I learned the hard way in a lot of cases by revealing all of myself and ending up being stomped upon, back stabbed or avoided like the plague.

I can now read people better, and I can usually tell within the first few minutes of a conversation whether someone wants to know about our life because they really care and are interested in learning or whether they’re just listening to be polite.

If you’re sitting there reading this and smirking, and thinking : ‘She’s kidding herself! She reveals SO MUCH of her family and herself on this blog, how can she say that she doesn’t reveal her true self’ well, you could be forgiven for thinking so.

But no-one’s life can be summed up in a handful of 1,000 word posts each week. It’s only ever going to be snippets and what I choose to reveal

There is always more to anyone than meets the eye.  And like my friend; When I do open up and share the difficult times, all we want is someone to come alongside us and give us a hug and say: “I don’t pretend to know what your life is like. I have absolutely idea how to help you, but I want you to know that I love you and I’m here for you”.

 And I tried to do that for my friend’s last night.

Fortunately I’m in a really great place at the moment: Harley is sleeping well now that he’s sharing Lucas’ room. Ella has made some wonderful friends at school and with Christmas holidays just around the corner, I can almost see the clearing that is respite at my Mum’s house for a few weeks.

The fog isn’t surrounding me right now. The smoke screen has momentarily been lifted from my eyes, which leaves me free to help my friend to navigate her storms.

My friend and I “had” a lot of mutual friends once. We know a lot of the same people and incidentally have both been hurt by the same crowds and have experienced similar rejections.

We both know that we are different. We share the bond of being misunderstood and unfairly judged mothers.

But right now, my friend doesn’t need judgement, she doesn’t need me or anyone else turning up at her house and piling her with well-meaning solutions. And she doesn’t need to be told how she ‘should’ be handling things or criticizing her efforts.

It’s not my or anyone else’s place-because we don’t walk her road. We don’t live her life and we therefore are not supposed to do anything but love her and be there for her.

Period.

True friendship is not about agreeing on everything or sharing the same interests. It is about offering unconditional love and support and being there in the tough times as well as the smooth ones.

I am grateful that I have been blessed with a number of supportive friends and they know who they are, they do it without expecting anything in return and love me as I come. I want to be that friend too.

~~~

The parallels between me choosing to wear my coping mask and my high-functioning child also doing the same has not escaped my attention either.

Harley is now 8 years old. He sees when kids don’t accept him. He was called “spastic” in the playground ** last week and Harley recognizes that he is different.

When he was 3 and 4 and 5 years old he was not so aware. He wouldn’t bother donning a mask and would lose his cool in the classroom or shopping centre whenever it hit him. He does this a lot less frequently nowadays, they are saved up for home.

These days he KNOWS that people look at him and judge him. He KNOWS that his school friends mock him and he knows that he needs to wear his “normal” mask at school.

And as I mentioned – the mask gets tossed aside the minute he steps in the safe haven of home and all hell breaks loose. And usually I swipe the air and grab the metaphorical mask it as it floats back down to earth and whack it on my face so that no-one can see that I’m shutting down because it’s all-too-damn-hard.

Stupid masks.

.

.

** (We deliberated night after night about taking this further but decided to leave it for various reasons…and that’s a whole other post! )

So what does fair mean?

  I posted about this particular topic over 12 months ago but this particular issue has raised it’s ugly head again recently so I wanted to revisit this subject because my feelings on it have not changed since and I am still very passionate about getting this message out there.

The majority of my blog posts stem from conversations I’ve had with friends and/or family and occasionally things I read, watch or hear through the media or Internet. But mostly, the topics for my posts come from personal situations that either one of my children or I have been involved in directly.

I know that I tend to over think things and sometimes I come up with the wrong answer but I rarely take things at face value anymore. I am just like any other mother who wants what’s best for her child but in my kid’s cases – I often have to fight harder due to the invisible nature of their disabilities. (Yes…I hate that word too but don’t attack me for it).

Recently, I was chatting with a good friend of mine who doesn’t have any special needs children at all. Her middle son is doing wonderfully at school but she told me that there are some ASD and ADHD children in her son’s class and how disruptive they were to her son. She then commented on how unfair it was on the rest of the class to have to wait for the teacher to deal with them all the time.

I saw her point and because she is a great friend and always will be, I know her heart and it is not one to cause offense or be judgmental so I made the decision to not call her on it and I let the comment slide.

I also know that unless you have a child with a special need it’s often difficult to understand that a simple task like sitting still for ten minutes can take ALL of their days worth of concentration and energy leaving nothing for the next 5 hours or so. These kids often just appear to the untrained eye to be a disruptive, inattentive child with behaviour issues. It’s difficult to understand that there is a helluva lot more going on than meets the eye and I get that because I’ve been there with Ella. I’ve been judgmental myself ….once upon a time!

I was thinking about my friend’s harmless comment again today in a new light and I remembered the earlier post I wrote that was about something that I heard once at an autism workshop that I attended. The subject we were discussing was behaviour at school particularly in relation to children on the spectrum in a mainstream setting.

The lady that was leading the seminar gave a great example to answer this question.

She said:

“Imagine, I am an ER doctor who is fully qualified in CPR and the person next to you has a heart attack. And even though I could (and probably should) step in and start CPR and mouth to mouth, I choose not to because it’s not fair to everyone else here that didn’t have a heart attack”.

She then went on to explain that by not giving our kids the help they needed because the other kids are being left out is no different to the ER doctor not wanting to “play favourites”.

I know how ridiculous it sounds when you put it like that but it sure makes a great point! My friend D told me that her son had a pre-school teacher that would tell the other children who complained about his perceived special treatment that fair is not everybody getting the same but everybody getting what they need.

How great was that teacher!

But don’t misunderstand me here. I totally understand where parents of well behaved, highly achieving, typically developing children are coming from when they complain about how their kids seem to be missing out because our kids require so much of the teacher’s attention and time. I get that. Really I do.

I help in my son’s classroom and I SEE that he is a handful. But I refuse to apologise for him because he is just being who he was created to be. There is a huge difference between ‘naughty’ and ‘overloaded’.

And because I am a parent of 2 children with ASD, I also know that it’s not our kids’ faults that they were born autistic (or with a special need of some type) just as the person having the heart attack in the above mentioned story didn’t choose it either. So why should they be penalised for something that is out of their control?

Exactly. They shouldn’t.

As a dedicated warrior mother to two fabulous spectrummy kids – I push not for better or preferential treatment but only what they deserve.

Don’t all kids deserve the very best?

Just a little food for thought……

Was it something I said?

I’ve been feeling really sorry for myself today. I’m completely bored with my life.

It’s Saturday afternoon and it’s a beautifully warm typically Australian Winters day. Spring is clearly just around the corner and though I feel very fortunate to live in such a gorgeous climate – I’m still feeling very blue today.

About an hour ago, I looked out my front door and noticed the neighbourhood children playing in the cul-de-sac on their bikes and scooters and there is even a game of touch footy down one end. Some of the girls are blowing bubbles and there is a lot of giggling going on.

But where are my children?

Slumped in front of some sort of screen. Of course.

Be it a Nintendo DS, a computer or an iPad, they are simply refusing to go out and enjoy the great outdoors. They never want to go anywhere or do anything and are completely content to avoid other members of the human race in favour of stupid technology.

I know that I should “be the parent” and make them get off the damn machines but I also know that it will cause tempers to flare and I don’t feel like the screaming matches and tantrums that it will almost certainly activate so I’m taking the easy way out.

Certainly not when Mr Patient isn’t here to bear half the brunt for me.

Yep. Home alone again and I’m completely over it today.

He is doing some overflow work and has been in and out of the house all day and up until 10 minutes ago (when I sat down at this computer to write this) I was stomping around the house trying to convince SOMEBODY to do something interesting with me!

I asked the kids to go for a walk or to come and kick a ball in the backyard with me. They barely glanced at me as they declined my offer. *Sigh* This is SO not the life that I signed up for!

Where’s the excitement? Where’s the action? Where’s the FUN?

Before marriage and certainly before kids I used to always have somewhere to go and something to do every.single.weekend. And I ALWAYS had someone to do it with.

Weekends were the time that I caught up with friends and chilled out and enjoyed life to the fullest no matter what I was doing. I used to look forward to them and they were my reward for making it through another week.

And even after we had Ella (and up until Harley was born), we still continued to socialise with friends, go places and DO exciting things on the weekends and were never short of an invitation of some sort. But those days are no longer.

Nope – I feel like our family has some sort of plague. Or a “keep back” sign tattooed on our foreheads at the very least.

All the invitations have dried up and we really don’t understand why? We have tried to nut it out together a number of times but neither of us can figure out what the hell happened or where we went wrong. Why doesn’t anyone want us at their picnics or BBQs anymore?

Are we really THAT bad?

Are we too boring?

Or is our children that are the reason behind this sudden decline in friendships?

***

I think that deep down I do actually know the real reason but I’m unwilling to face it. And I have a strong feeling that Autism has a lot to do with it. Maybe not directly but certainly indirectly.

I think that people don’t understand us so they avoid us. Our lives are too intense and our children require more than a lot of people could be bothered giving so no-one wants to get close.

Or have we scared them off ourselves with the stories we’ve told or worse still…..I worry that this blog has painted such a horrid picture of life in our house that people no longer want to come anywhere near us?

Is this all MY fault?

***

Recently we have talked about the other possible reasons for the rapid decline in our social life and realised that all the places that regular people frequent and start friendships with other families are all out for us.

For example:

Church – Harley can’t handle crowds or noise and if we do manage to stay for a whole service and attempt coffee afterwards…we pay heavily for it later with an emotionally overwhelmed screaming child that can take hours to bring down again.

Sporting events – Are you kidding me? Loud noises, crowds, strong unfamiliar smells, flashing signs…do I really need to go on?

Children’s weekend sports – Well, team sports are automatically out for us due to Harley’s anxiety issues and fine motor struggles not to mention the complete lack of interest in them whatsoever.

Old school friends and their families – Um…..not here. I don’t have any. All mine are back in my hometown so that’s out.

Family members: Sisters,Brothers,Cousins, Aunties, Uncles – none live anywhere near here so ….No.

Work aquaintances – We live over an hours drive from Mr Patient’s workplace and I haven’t worked since Lucas was born 5 years ago so we don’t know anyone!

As Mr Patient and I continued to chat about this –he suggested that we make more of an effort to find some new friends and start inviting people over here first. You know….the whole “be a friend to have a friend” thing. But I couldn’t help but giggle at this idea. I mean, isn’t that like the episode of FRIENDS where newlyweds Monica and Chandler go on a mission to find another married couple that they can pair up with. You know….”married friends”.

They end up being so full-on and come across as so desperate that they scare of everyone in their paths!

Anyhow:

Sorry about the whole whiney tone of this post, I know it’s packed full of negativity and moaning but I’m just trying to work through a few things.

I do however wonder if any other ASD families feel this way too? Do any of you ever wonder where the heck you went wrong and where did everyone go? Do you still long for the acceptance that you’re always banging on about for yourselves or is it just us?

I’d be interested to know your thoughts?

Even if it is baby steps – it’s STILL progress :)

Amongst all the drama that has been going on around here lately – there have been some really great things happen as well that I really want to write about before I completely forget about them. It’s not all doom and gloom and there is some fabulous progress that has really gotten me excited. It’s all about baby steps. Nothing major but lots of little baby steps in the right direction. They all eventually add up to miles and miles of huge strides and cover a lot of ground in progress. I want to share these few little baby steps with all my autism Mother friends  :)

I have this framed on my wall. It's all of my children's FIRST steps ♥

Last Thursday (which was Lucas’ birthday – and the day that everything went pear-shaped), Mum and I took the kids up to a local shopping centre with the idea of buying a special birthday lunch for them all but it was cut short due to Lucas’ constant cries of pain so we rushed him straight to the medical clinic which is part of the centre.

While Mum and I stood in the middle of the food court trying to work out the logistics of who was going with who and what we were going to do with the groceries that we’d just bought that needed to be refrigerated, Harley was quickly reaching the point of no return. We were both oblivious to the crowds of people circling us, the music coming from the stage in centre court, the flashing lights and the singing. Our focus was in the moment.

But Harley’s wasn’t.

I glanced over at him just in time to see him suddenly go stiff and stand still with a look pain on his face. He then clapped his hands over his ears and cried out in a pained voice: “I don’t know what’s wrong Mummy…..but I feel really funny and really scared and I need to get out of here”.   He was clearly in sensory overload and really freaking out.

I looked at Mum and we both knew that he had become dangerously close to melting down and that he needed to go outside to escape IMMEDIATELY. No ifs, buts or maybes…..it had to happen or we would pay the price in a big way.

I grabbed Lucas and headed straight for the Doctors and Mum gently led a shaking Harley and Ella outside the centre to a quiet spot where she later told me that she hugged him tightly for about ten minutes until he was able to come down again. Apparently, Ella offered her cardigan to him and he wrapped it tightly around himself shivering and gradually the fear and anxiety subsided enough for Mum to finish the rest of her banking and shopping.

And that right there is a part of autism that I still struggle with even now. The complete bad timing of it all. It has no regard for schedules or whereabouts you happen to be at the time.  If Harley becomes this overwhelmed….it’s like a pressure cooker where the valve just HAS to be released. Life is never simple when it’s just so unpredictable.

But here’s where the silver lining lies:- I’m excited that Harley was able to recognise AND verbalise the fact that he was starting to get out of his comfort zone. He still wasn’t able to articulate exactly what was making him feel so out of control but it is a brilliant step up from this time last year!

We had another episode once we stepped into the Paediatrician’s office the very next day when Lucas was called back in. The waiting room was filled with crying babies, there was music on the radio, ringing phones, tapping on the keyboard and it was crammed full of prams, children and adults . I looked down at Harley and the tell-tale signs were there again. He looked at me and said “Mummy, it’s happening again, I need to escape here”  so Mum grabbed him and took him for a walk before it hit crisis point. What a champion!!!

And on a side note: I’m so thankful that Mum is here at the moment. I have lost count of the number of times that I have been in situations like this and Harley tips over the edge but I have no choice but to leave him in the place that is the cause of his anxiety and he just has to suffer through it.  It’s not easy wrangling 3 kids when one of them is in crisis mode and unable to communicate or cope at all. I simply have to keep him there and try to distract him because there is no-one else to help.  These times kill me because I HATE putting him under this kind of pressure and it’s not fair to expect him to conform when it’s literally eating away at his very soul. 

And even now that Harley is starting to recognise the signs – I still won’t always be able to allow him the escape he desperately. It’s why I don’t get out much and why I refuse most invitations that I receive. It’s just all too hard you see

But I’m not going to dwell on the negatives today. I’m going to rejoice that finally – I think I may have found the perfect paediatrician through all this drama!

I was SO impressed with him and will definitely be back.

The first thing that he said to me when I walked into his office was: “So Mum, you’ve got Bells Palsy – How long have you had that for and what was the cause?”   Once I explained that it was due to a brain tumour I’d had removed – he visibly relaxed and it wasn’t until later that I pieced this all together in my head and understood where he was actually going with that initial question.

I later realised that he was asking me because he needed to rule out MS and other conditions that cause facial palsy in case they might have been related to Lucas’ condition.   I call that thorough. I call that observant and I call that intuitive.

I then realised that he was brilliant!  Most people tell me that they don’t notice my lopsided face nowadays but this Dr noticed it immediately and didn’t miss a beat. He also didn’t treat me like a neurotic mother which sadly – is a rare occurrence in my experiences with the medical field in Australia.

But the icing on the cake with this wonderful man was when we arrived at the hospital and he had a paediatrician in training with him . She asked Lucas a question that he didn’t respond to and Dr Wonderful turned to his student and said “Could you ask that differently please – he’s autistic”..

Hooray!!!!!  He gets it!

I told Dr wonderful at the initial appointment that Lucas’ actual dx is Aspergers but he called it autism! HE CALLED IT AUTISM!

He then proved to me that he is NOT one of the medical professionals who just.don’t.get that although high functioning children are better off in some ways than classically autistic children – he was acknowledging that it is STILL autism and that our kids still need a lot of special allowances made for them.

All is well. Lots of baby steps all in the right direction.

Life is definitely looking up

The Posse on the hill

I’d be willing to bet that they didn’t think I would actually do it I – but I am always up for a challenge and this one is relatively easy for me.

For those of you wondering what on earth I am banging on about – let me explain:

A lovely group of Mums up at the kid’s school were chatting with me this afternoon about my blog. One of them jokingly asked me to write a post about all of them.

I smirked to myself because what they didn’t know was that I had already half written a post in my head after one of the ladies made a comment that had triggered a train of thought for me anyway!

She had said that often they called out “Hi” to me but noted that I rarely responded, but she knew that it was because I am completely deaf in one ear and assumed that I probably didn’t hear her.

And that is true and I’m really grateful that she has been giving me the benefit of the doubt, but it’s actually a lot more than that as well. I actually don’t even notice them either.

You see, most afternoons as I walk into school to collect Harley, my brain is usually caught somewhere between vague and tormented. I rarely look up because my eyes are fixed on Lucas who is known for his absconding and it’s the time of day that I am trying to prepare for the afternoon onslaught of emotional outbursts that are bound to occur.

I guess you could say that I am mentally psyching myself up.

As I walk, I go over the routine in my head so that when we arrive home, things will run as smoothly as possible. I know that Harley needs to wind down from keeping it together all day so I need to make sure everything is ready for his return.

Before I leave for school in the afternoons, I have his crashing corner (complete with cushions, bean bags and pillows) set up so he can get his sensory input so that I don’t become the punching bag, the kicking post and the sounding board.

I have afternoon tea already laid out because another trigger for him is to not know what he will be eating. It exacerbates his anxiety and really is a very easily solved problem.

I have dinner planned and written down on the whiteboard so he knows what to expect and I have his homework all ready to do on his desk.

The things that inevitably throw the order out of whack are little things like sibling rivalry, unexpected phone calls, and rain. He LOVES the rain but it sends him into a trance like state where he is rendered useless when it comes to concentrating or obeying commands!

So, each afternoon as I make my way to the school gate, I mentally tick things off one by one in the checklist in my head and brace myself for my little tornado to be released!

There is another scenario at play here as well.

This one is a little bit harder for me to write about. But you know what?….I think I’m finally ready! It’s more of a personal journey that I have been slogging away at for almost 4 years now and it started way back when Harley began school.

Other autism mother’s will surely agree with me that there is a part of you that is forever changed once that diagnosis is thrust upon your child. It’s like the protective parent gene that we all possess but magnified by about 10,000. It’s kinda hard to explain, but it’s a sense of taking that diagnosis on yourself as well.

It’s been written many times that when one member of a family is diagnosed with autism – the whole family is also. Because it isn’t like a broken leg or a case of the chicken pox – both of those things will eventually end, it is a life-long thing that doesn’t just affect one small part of your child’s life.

It affects EVERY part of their lives.

Triad of impairments which simply put are: difficulties with behaviour, socialising and communicating cover every area of a child’s development and is what all the spectrum have in common.

For me personally, Harley’s diagnosis was like I suddenly took on board all of Harley’s issues, emotions and pain like it was actually ME that was diagnosed. I felt every eye staring at me everywhere that I went, I felt incredibly judged and scrutinised and I was afraid to get close to anyone for fear of either myself or a member of my family getting hurt.

I suppose in hindsight that I can admit that I withdrew from people because it was just all.too.hard.

I was jealous of all the mother’s with their “perfect little NT kids” and I felt ostracised, alone and jaded. I kept my distance for a long time because it was like I had forgotten how to socialise. I no longer had anything in common with anybody and I just couldn’t cope with life.

Cue the nervous breakdown that I had last year when things became far too overwhelming and the elephant in the room that everybody refused to speak about just became bigger and bigger.

This should help to explain my seemingly odd, aloof and reclusive behaviour of late!

Then very gradually things started to look up. I joined an online support group for parents of children on the spectrum and I met a whole bunch of parents struggling with the same daily issues, walking on the same narrow and unpopulated trails and they were able to speak wisdom and love into me again. They “got” me!

They didn’t judge, they understood the heartbreak, the gut-wrenching pain and celebrated the small things with me.

Then I started blogging. I met hundreds of people in every corner of the globe who were also fighting the same fights but with different systems, wrestling with the same teeny tiny gripes and able to offer support and friendship to someone who so desperately needed to be accepted.

God met me where I was at and lifted me out of the pit and eventually, I was able to breathe again without my lungs filling up with disappointment, grief and regret.

I still have a lot of really off days, and I know that it will continue to be a challenge, but I guess it’s time to be out and proud: – I AM THE MOTHER OF 2 CHILDREN WITH AUTISM AND I LOVE MY LIFE!!!!!

And as for you gorgeous posse on the hill – I will train myself to look up, smile, wave and call out “Hi” back.

It’s never been anything personal. I just needed to find the sunshine again