I am a huge fan of analogies. I love it when someone gives me an easier way to understand things and it occurred to me today that it’s very similar to the way that Jesus spoke in parables. That’s why I relate so well to bible stories. I have been thinking today about ‘our situation’ and the thought dropped into my head that our life is not unlike a mortgage.
Stay with me on this ok…I am actually going somewhere with this – I haven’t completely lost my mind just yet!
I was chatting to Mr Patient last night and said to him that I am aware that I DO get time away from the children and that I can’t understand why I still feel like I need a break?
I mean – It’s not like I NEVER get away – I have a beautiful friend who regularly takes me out for coffee when the kids are in school plus she meets me in the park after school with the kids as well and inputs wonderful things into them.
I also have 6 hours on my own every day while they are in school, yet I still have a strong desire to escape and get away from it all and regularly feel overwhelmed. I was wondering why this is and it occurred to me that it’s all very much like a bank loan.
Take for example our mortgage: Even though we make regular payments and cut into the principal of the loan, there is still a great big debt that needs to be paid off that only ever gets reduced very slowly and very gradually.
We are not likely to come into any huge lump sums of money; so slowly but surely is the only way that we can chip away at it.
But if we stand back and focus on the enormous amount that we still owe without taking note of the small amount in comparison that we’ve already paid – we are in danger of becoming overwhelmed, depressed and then helplessness starts to creep in.
We need to continue to make these little payments in order for the bigger picture and greater rewards waiting for us despite how insignificant they might seem.
Over the coming years, we will see the payments yield greater results and the principal loan lessen to the point where all we will see is what we have worked towards and what we have achieved. One day we will own this house and can stand back and be proud of all that we put into it over all those years.
But if we give up now and say “These payments aren’t making any difference - they’re too small” then we would never achieve that end goal.
And it’s like that with raising our children, because the small but still significant snippets of time that we put into them all adds up to a well-balanced and stable adult in the end.
And the small amounts of time that I get away from the children to be me and to refresh myself – all add up to a well-balanced and stable ME.
I have realised that if I sit back now and don’t make the most of those small amounts of time that I DO have and focus on all of the time I DON’T have to myself – I will lose sight of the bigger picture. EVERY day, hour and minute to myself should be treasured and counted as a payment towards inputting into my children’s futures. On their own they don’t amount to much but added together over the years – they make quite a big difference!
I realise now that it’s not going to happen immediately. Interest rates have risen quite high in the emotional bank at the moment, but it’s ok – we WILL get there and it WILL be ok.
Am I crazy for seeing things this way?
Maybe. But I know that optimism is a choice and one that I don’t make often enough and I’m starting to recognise that it’s one I need to make more often.
And as long as I make regular payments into the “Fiona fund”, Things will work out in the end.
One step at a time.
You’re going to be ok.
If you’ve clicked on my blog hoping to see a cheerful upbeat encouraging blog post today – you will be disappointed. Today’s post is something that I need to get of my chest, things have been very trying here lately and I’m using this platform to voice a frustration that I have with the current government and those in positions of influence.
But as you read this: Please know that I haven’t lost faith in God or his miracle-working power – I know He is working in our lives and that He will make it all turn out for good , but the light at the end of the tunnel is quite dim right now and I’m writing this out as a form of therapy for me.
Feel free to click elsewhere and read a happier, cheerier post that someone else wrote if you think you can’t handle this. I won’t hold it against you….I promise
Bureaucrat : an official who works by fixed routine without exercising intelligent judgment.
Dear Mr Bureaucrat,
I don’t even know your name. You hide behind unnecessary paperwork and ridiculous rules and regulations making it impossible for the average parent to even gain access to you. You’ve been sent numerous files from several sources on our family and therefore should already know our situation.
But rather than make you sift though more paperwork and waste MORE of my precious time, let me refresh you:
We have 3 children, 2 of them are diagnosed on the autistic spectrum and we have no family living nearby at all. My husband works away from home a lot and travels interstate regularly. Most of the child rearing falls onto me and I have requested help more times than I can remember. I have had social workers submit requests on our behalf, but still you guys continue to push all of those facts to the side as you reject us time and time again for respite. I just don’t understand at all and I am getting desperate to be heard.
Do you know that our family is held together by duct tape? And do you know that this tape is getting dangerously thin? It is fraying at the edges and it won’t be long until everything falls apart at this rate.
I seriously have begun to doubt that you and all your bureaucrat friends with your stupid bourgeois rules even care.
Are you aware that we spend an absolute fortune on sleeping, anti-anxiety and anti-depressant medications each month just so we can cope?
I’ve been told to go and talk to a psychologist in conjunction with my meds for my own well-being, but frankly: I don’t see the point. Because just talking never changes anything, I want actual physical help. I want someone to come and take my son on a regular basis and GIVE ME A BREAK. Words are absolutely useless to me right now and mostly serve no real purpose other than to annoy me further.
Recently I have had my own medication increased. Doubled in dosage actually so that I can ‘cope’ with my load. But I’m not interested in just simply coping. I want to thrive, I want to succeed and I want to bloom. I want to be the mother that my kids deserve not the mother that they are stuck with.
Because ‘coping’ means barely scraping by and that’s just not enough. It will never be enough.
Surely with the ever-increasing rate of autism in this country SOMETHING has got to shift. MORE services need to be put in place and funded and more families need to be able to access them.
And I am not the only one screaming out for help here. There are many others who are also being crippled by the weight of carrying so much responsibility on their own. This is not just child rearing: This is parenting extreme style. And a lot of the time it is so extreme that it would frighten the pants off most ordinary folk.
Most days I feel like I am gripping onto the edge of a cliff with my fingertips while the rest of me is dangling over a bottomless chasm. We ASD parents deal with all the same issues as parents of typical children do, but then we have all the other added ASD stuff on top. We deal with major sleeping issues, toileting issues, communication issues, issues with motor skills both fine and gross, sensory issues, learning difficulties, and a host of other things. Most of our kids have a variety of letters to add to their autism diagnosis because autism rarely travels alone. Our kids also carry diagnoses like: SPD,ADD,ADHD,ODD,OCD to name but a few.
Right now, our entire family dynamic is malfunctioning and no-one in the higher places wants to touch us for whatever reason we are given THIS week as an excuse.
Seriously: This is Australia…..The “lucky” country. Well…apparently it is. I’m have to say that I’m not feeling the lucky part right now.
Mr Bureaucrat: We are tired of living in the too-hard-basket and we want out because this is just ridiculous.
No actually: it’s a big fat joke.
And while I’m on it, What are you doing about funding for autism in schools? Because last time I checked – Aussie kids don’t get anywhere near the aide that they need or deserve. It’s embarrassing to read stories from all over the world and see just how far behind we are as a country. Do you guys in your expensive suits in your leather swivel chairs with your water views and free lunches and frequent overseas trips on our tax money even care?
“Frustrated” is the word that frequently comes to mind whenever I’m asked how I am these days. So damn frustrated.
Does it have to get to the point where a child is in danger or a parent loses their mind and gets sectioned before you’ll step in? Where exactly is the line between desperate and worthy?
I’m frustrated at the system and at the exhaustion and at the lengths that we are made to go to just to survive these days.
Something’s gotta change Mr Bureaucrat , I don’t know how and I don’t know when, but it HAS to change.
An extremely frustrated mother.
It’ s been a rough week for all of us and for once, autism isn’t to blame.
Today is the 4 year anniversary of my Dad losing his battle with cancer and I know I write a tribute every year and this year is going to be no different.
But this year kinda has a sick twist to it in that my Mum is in the very same hospital today that Dad passed away in back in 2008. *shudder*.
So why is she in hospital? Well, she fell down her stairs and fractured her foot. It is awful and made more so by the fact that she is unable to weight bear on her opposite knee and neither my sister nor I live near her so she’s having to rely on friends to do anything as she’s not allowed to drive for 6 weeks.
Thankfully she has a great group of friends and she is in good hands but if you are a pray-er, please add my Mum to your prayers for a speedy recovery.
Anyway, as I was driving the children to school this morning, I told them what today was and asked them what it meant to them individually.
Ella sighed and said that she missed his silly jokes and then suggested that we call Grandma to see how she is. Yep…she’s as thoughtful as ever is my girl.
Harley said: “I can’t believe I was only 4 when Grandad died” and Lucas….
Well Lucas had a reaction that really stung.
Because when Dad passed, Lucas was only 18 months old and has no memory of Dad at all. He asked me who Grandad was and it totally broke me apart.
I am thankful that Dad got to meet all of his grandchildren but devastated that my son has no memories of the wonderful man who Dad was and the realisation that he has only ever known Grandma to live in that big old house by herself really hit me hard.
Lucas doesn’t remember being taken to the fire station where Dad worked and having these 3 photos taken; ⤵
And he has no memory of being chased by Dad in shops when he ran away to find mischief ⤵
And he certainly wouldn’t remember being given his first lesson in shaving ⤵
But I remember all of these times and much more.
I remember Dad giggling as he tossed his Grandson in the air ⤵
And posing mid-hug with a little Lucas ⤵
Dad was an awesome babysitter. Well, when he didn’t sleep on the job! ⤵
And I remember how proud ha was of all 5 of his grandchildren. I love his proud smile in this photo which was taken on the day that we brought Lucas home from the hospital.⤵
Dad: I will tell my boy all my wonderful memories of you.
Your memory will not die out with me.I promise.
I am thankful that you input so much good into me and I will make you proud.
Love you, Miss you, Wish you were still here ♥♥♥ xxx ♥♥♥
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.
So it’s been almost three weeks since I have been a free agent.
Three weeks where I have had six straight hours to myself, five days a week.
A while back, I made a ‘later’ list.
You know….a list of all of those little things that have needed doing but you’ve never had to time to do them? I told myself (and Mr Patient) that once all the kids were at school full-time, that I’d tackle that list with gusto.
So I sat down today with a pen and decided to tick some of them off so that I could feel better about myself, and like I’d actually achieved something worthwhile over this three-week period!
I have a HUGE basket full of many items of clothing such as dresses with seams to let out, skirts with hems to fix and shirts that need buttons sewn on. Oh – and Hubby’s work pants that need to be altered too.
I peered into it and realised that none of it had been touched. It has been so long that dust has settled on the edges of the basket. It was not looking good!
I sighed and moved onto number two on the list.
2. Clean out the pantry.
I opened the doors and glanced in (which is kinda funny since I look in there everyday and I wasn’t sure what I thought was going to be different this time!) and nope – it was still a massive mess of opened boxes and mismatched Tupperware containers. An upturned cereal box with a trail of nutri-grain spilling out caught my eye and I quickly slammed the doors closed and went back to my list.
“It’s all good” I told myself, “You are exhausted, so you know that you MUST have done a LOT. You’ll see”!
Now THIS one I knew I could tick off. I walked into the hallway to open what once was a linen press that we had turned into a games cupboard. I flung the doors open proudly so I could check out my awesomeness.
But I was startled to see boxes literally stuffed in and several loose games pieces on the floor.
The higher shelves were still immaculate but the lower ones….not so much!The second bottom shelf had some of Lucas’ dinosaurs gathered in a corner having a “pow wow” and for some strange reason…..there was a sheet stuffed in there? It hasn’t been used as a linen closet for years?
<<– See this photo? See that little bitty screw and screwdriver that are stuck up in the architrave with blu-tack? Well, the cupboard usually has a child lock on it to prevent access by the smaller humans but I took it off a few weeks ago so that Ella could get to it easily when she had a friend stay over. I hadn’t told the boys that they could access it now but they have obviously found out! And silly me forgot to re-attach it!
I sighed resignedly and glanced down at item number four hoping for a reprieve.
4. Re-organise our walk-in robe.
I laughed out loud when I read this, I KNEW it was a disaster – I got dressed this morning by putting on something straight from the ironing basket (un-ironed of course)!
My list sure wasn’t looking good.
I thought a good alternative would be to write down what I HAD done instead of pointing out to myself what I hadn’t.
Let’s see. Monday: Met a friend for coffee, put petrol in my car, made the lunches for the week at school, re-packed Ella’s bags for camp (don’t even GO there!), came home and slept for 3 hours. Dragged myself up to school to collect the kids, had an impromptu meeting with the teacher. Spent waaaay too long arguing with Harley over doing his homework, over showering, over packing up his toys, over just.about.everything! And fell into bed exhausted at 9pm.
No. Can’t write that down. That’s just a normal day. No special achievements there.
Tuesday: Vacuumed and mopped house, washed 4 loads of washing, baked 2 loaves of gluten-free bread and changed sheets on three beds. Not bad….but then I lay down on the lounge and slept for an hour before collecting the kids. Same afternoon routine : argue, be firm, still manage to lose, fall into bed exhausted.
Wednesday: Drove Mr P to the airport for his interstate flight, did the grocery shopping, slept for 2 hours and was woken by a text message from a friend. Met her for a quick coffee before collecting the kids.
After school fights, forcefulness and frustrations.
Rinse and repeat.
And today: 2 more loads of washing, fresh food shopping, cooked two meals and …wait for it…..slept for another hour.
There’s a theme emerging here! I seem to be doing a lot of sleeping. Hmmmm, maybe it’s my body’s way of saying ENOUGH ALREADY!
Or maybe it’s just all too overwhelming and my brain is choosing to shut down! LOL
I seriously take my hat off to mothers who manage to work outside the home as well as keep a house and family. I simply do not know how they do it. They are AMAZING!
I can hardly cope with the everyday stuff let alone my “later list”. And about that later list?
Well, if you’re looking for me – I’ll be curled up on some couch somewhere watching that stupid list BURN on an open fire! I don’t care if it’s summer here! I can handle the heat.
Well then, I’ll more than likely doze off
I’m only just scraping in to Wordless Wednesday by a few hours here in Australia and I wasn’t going to post anything today but I just HAVE to share this.
I was heading to bed for an early night and went into the boy’s room to check on them first. I kissed them both and as I pulled up Lucas’ sheets, I noticed a big lump protruding from the bottom of the bed so I felt it but couldn’t work out what it was. I went and turned on the hallway light to get a better look and had to stifle a laugh when I noticed him sporting an OVEN MITT on his FOOT???
Yup. That’s right. An oven mitt!
It was complete with food stains because it had been thrown in the hallway in front of the laundry (by a lazy me) so he’s obviously seen it on his way to his bedroom and thought: ‘Hmmmm……This big sock is pretty cool, I will put it on!’
What a thoroughly odd child!
But it did give me a giggle
I remember back when I was only a small child and the one thing that I was majorly petrified of was thunderstorms. And I also remember how I used to climb into my parents bed until it passed and only there and then, did I feel safe.
As a child you just expect your parents to be braver, stronger and wiser than you are. You assume it goes with the territory.
However, I’m sure that there were many times that things frightened or unnerved my parents, but they continued to stay strong for our sake because that’s just what parents do right?
Well….now that I’m a parent myself, I sometimes wish that I could still climb into my parents bed, pull the covers over my head and let them deal with whatever or whoever had upset me.
But I know that I can’t do that anymore. I have to be the provider of a bed to hide in and I have to step up and be the brave, strong and wise one.
And we all know how incredibly tough that can be at times.
I am realising that my children expect from me what I did from my parents and to be frank – that scares the heck outta me!
Because I am far from having it all together.
In fact, just today, I was “unfriended” by someone on Facebook whom I thought I had a good relationship with. And it kinda hit me from left field and yeah – I’ll admit it: it really upset me! I wanted to go to my Mum in tears like I would have done when I was 12 and require her to say all the right things and make me “feel” better and put an emotional band-aid on me so to speak.
I wanted to find out what on earth I had done wrong and I wanted to stamp my foot and scream like a petulant child.
But I couldn’t.
A remarkable friend of mine wrote to me: “It is all part of the tapestry of life, dearest Fi. Life is too short to give energy to this kind of thing. Try not to let this person be ‘rent-free’ in your head space!”
What awesome advice!
So here I sit, calling myself a Christian and knowing that I am loved and accepted by God BUT still letting silly little things like this steal my joy. It really is ridiculous when I KNOW in my head that they really don’t matter in the grand scheme of things. It’s moments like these that I get to choose to either learn from them an grow a bit more, or allow it to consume me and ruin my day unnecessarily.
And the similarity between my socially challenged children being bewildered by social reactions – and me being completely blind sighted by this unexpected unfriending was not lost on me at all!
I can only imagine how hurt my boys must feel when someone “unfriends” them in real life when they have no clue as to what they’ve done.
I have a better (though not complete) idea now of how confusing it must be to my boys to think that they’ve said and done everything correctly in a social situation only to be turned away by people that they really believed liked them for who they were. And it’s helped me to understand better why sometimes after school, Harley comes home and throws the metaphorical sheets over his head and hides from the world.
It’s because I am SAFE.
I love him no matter how he acts…..He knows that I will never unfriend him and that he doesn’t have to put on airs and graces with me.
And that right there – is incredibly special to me. I have realised that I AM the parent who can calm my child after thunderstorms and I AM the parent who provides the safety that he needs until the storm has passed.
Life is damn hard at the best of times with a neuro-typically wired brain…..but when every single social situation is as different as the seasons…..How much more challenging is it for those on the spectrum?
I am comforted by the knowledge that God will NEVER unfriend me no matter what I say or do and that is what I intend to teach my children.
I really love it when people surprise me.
It can turn a rotten day into a great day. Or a “better” day at the very least.
My husband is referred to on this blog as “Mr Patient” but I’ve never (until now) explained the full reason for giving him this pseudonym.
It’s kind of a family in-joke. The fact is: He is probably one of the least patient people I know and therein lies the irony. Calling him “Mr Short-Fuse” or “Mr Can’t Cope” doesn’t really have the same comforting notion attached to it. People don’t know where to look or how to act when you describe someone the way it really is. So I opted for the kind approach.
But don’t get me wrong: Mr P is a wonderful man, a loving husband and a great father, but he just doesn’t cope well with the children and their noise levels and consequently: most of the child rearing falls on me.
No, it’s not ideal but I can see that he doesn’t handle them and their “stuff’ because I can also see a lot of AS traits in him that contribute to his lack of coping mechanisms. And both of us have developed big sensory issues that we never remembered having previously.
So I make allowances for this and usually take over the kid stuff to keep the peace.
However, this past week I have been under a lot of pressure from all angles. A lot has been going on and I haven’t managed my stress levels very well I’m afraid. I have been very teary, sleepy (a result of me wanting to shut down) and more than a little brain fried.
But as all mothers do – I’ve soldiered on for the sake of my kids.
Until this morning: I sat at the table eating breakfast trying to block out the cacophony of noises surrounding me. There was screaming coming from Harley – something had set him off and I didn’t really care to know what.
Lucas was throwing his teddies at the wall and catching them on the rebound and Ella sat with her iPod buds in her ear in an attempt to block out the chaos. Half her luck!
Mr P was in the kitchen unpacking the dishwasher and every clang and clunk made my skin crawl. I felt like I was going to explode with anger.
I took my now empty bowl over to the sink, glared at him and stomped off to our room. I KNEW I simply had to get a grip. But the tears flowed as I felt myself sinking deeper and deeper into the familiar territory that is depression.
I wondered aloud if I had taken my medication this morning and went back out to the kitchen to count the tablets in the box so that I could find out. As I turned the corner to the kitchen, Mr P took one look at me with my tear-stained face and slumped shoulders and said: “Woah….We need to get out of here”.
“I’m not going anywhere, can’t you see I’m exhausted” I screamed at him spinning on my heel. His shocked face didn’t register at first but it softened as he replied:
“No, ‘we’ meaning the kids and I. I’m going to take them out for a couple of hours and give you a break”
I looked at him to see if he was messing with me.
“You’d really do that?” I enquired. It was an unusual offer for him to make. He knows that he can’t handle them all together and usually only takes a maximum of 2 at a time.
“You need it, you need to rest”. He answered. “I will make it work. They’re our kids and I don’t do enough to help you.”
“But the boys need to be pre-warned, you can’t spring it on them like this” I protested.
“So tell them now” he countered.
Ella walked over to me at that moment and put her arm around me and rested her head on my shoulder. She said: “It’s ok Mum, I can help Dad with the boys, don’t cry, it’ll be fine, you’ll see”.
I walked into the boy’s room and sat down on Harley’s bed and told them that Daddy was going to take them all for a drive.
“Your eyes are wet” stated Harley.
“I’m hungry” said Lucas.
And with that – I knew that they would be ok.
Mr Patient then ushered me back to the bedroom , closed our blinds and pulled back the sheets.
Almost two hours later I woke up refreshed and with a restored faith in my husband.
This is why I KNOW that God is good.
He will always provide the rest that we need but it doesn’t always happen in the way that we expect it will.
Thank God it’s Friday.
In this house – it’s not just a cute phrase that we toss around ….we really literally DO thank God when the weekend arrives because school days are a special kind of hell.
This week has been a particularly hard one with 5 MAJOR meltdowns to contend with and they’ve all left me feeling completely depleted.
And it’s not just me that’s being directly affected. This morning, Ella had to step up (as she has done many times in the past) and be the extra parent to ensure that we all made it out the door in time.
She had to prepare Lucas’ breakfast, keep on top of him to make sure he actually eats it, help him get dressed, clean his teeth and put his lunch in his bag. She then helped him make his bed and then had to go and do all of these things for herself as well.
She is not quite 12. It’s not fair. She shouldn’t have to take on so much responsibility at her age.
But it had to be this way. Harley had a level 10 meltdown this morning. And those ones are the absolute pits. I have bruises on my legs and my head still throbs where I was kicked. He wasn’t in control of his body and was unable to function in any sense.
It was like an out-of-body experience.
I was here, but unable to pacify Harley and look after everything else as well so I NEEDED her help and I seriously don’t know what I would’ve done without her.
I was lying beside Harley on his bed while he kicked, screamed, thrashed and cried and was on the phone to my Mum at a ridiculous hour, because I couldn’t bring Harley down again. It was frightening and overwhelming even for me. I asked Mum to pray with me. I had no clue what to do next because he was so distraught and in such a state that I had to stay close so that he didn’t hurt himself. My wounds will heal, but I didn’t want him to self-harm.
Long story short: I think he is struggling with the social aspect of school and will be delving deeper into this as of Monday. The seed was planted this morning with the teacher so I have to gather my facts over the weekend before discussing it further).
After I’d dropped the kids off at school this morning, some lovely mothers invited me out for a coffee and I jumped at the chance. I NEEDED a wind down and bless them – they were just what I needed.
In the past, there have been times that I have spoken to friends with NT children only to be told “but all kids do that”. But when I explained what we’d been through this morning, they confirmed for me what I’ve wondered about all along.
No. That’s not “normal” behaviour for an 8 old yr old child. Sure, NT kids certainly lose it on occasion, but not with the frequency that we deal with it and they duration is much shorter for NT children.
And then I described what my beautiful daughter had to do this morning and they agreed that it is a lot to expect from her.
So yes…I do feel bad for her…..but what are my options?
I don’t see how I can manage without her and that conflicts with my desire to free her and let her be the kid that she still is. Mr Patient was away again with work, he returns this evening and I have no family here. She was all I had.
So I have been consoling myself with the thoughts that perhaps parenting will come more easily to Ella than it did to me. Because she likely won’t see anything in her kids that’s worse than what she’s grown up with. If anything, she will wonder what’s wrong if she has calm and placid kids!
Well, I grew up with one sister and neither of us had spectrum related behaviour issues to deal with. I’ve spoken at length with Mum on this too.
That’s why this is all so new to me. I see nothing that reminds me of my own childhood. I have no memories of my Mum sitting in a puddle of tears crying because her heart was breaking for her child who isn’t even close to controlling their emotions. Or feeling her almost tangible anxiety over her child that has no way of communicating other than that kind of behaviour when in distress.
And I’m very aware that my daughter sees far more than a pre-teen ever should.
I just don’t know how to change this.
Remember how I told you all before that my boys – though both diagnosed with Aspergers – have completely different sensory profiles?
Well, yep. We saw that in action BIG time yesterday
I took the children to a local park after school with a friend for afternoon tea. They all had a fabulous time and are already asking when they can go back so we hit on areal winner.
But this story begins after we came home last night and the “fun” that followed
(Just as a reminder….Harley is the germ-phobic, dirt avoiding, noise hating child who washes his hands frequently in a manner that’s borderline OCD. In fact, he won’t even use a public restroom unless he has first checked that there is in fact soap in the dispensers. He did this yesterday too Whereas Lucas is the complete opposite: he runs, he yells, he plays in water and mud and doesn’t particularly care what state his hands are in. )
So having such different sensory needs sure makes for a fun life let me tell you!
After we arrived home, I asked the kids to remove their shoes and throw their clothes into the laundry hamper and hop in the shower. I was most surprised when Lucas actually did all this BY HIMSELF but my biggest surprise was still yet to come.
We ate dinner, cleaned their teeth and headed for their bedrooms to start the story book, kiss and cuddle routine when I noticed a trail of dirt leading towards Lucas’ bed. I figured that it must have fallen out of his shoes so I grabbed the broom and swept it up.
I returned the broom to the kitchen when I heard Mr Patient yell out : “Fiiiiiiiiii!, You HAVE to see this!!!!” So I rushed back in there CRINGING because it was one of those ‘Uh-Oh’ cries. And yup…..It was for good reason!
On Lucas’ window sill which is directly over his bed, there was a mound of dirt that was roughly as high as an upturned cereal bowl and in the top were 3 little weeds that Lucas had somehow smuggled home from the park WITHOUT ME KNOWING and he had ‘planted’ them! And the dirt that hadn’t managed to stay on the sill had spilt ALL down his wall, into his bed and under the covers.
Lucas was beaming and as proud as punch as he showed us that he had ‘planted some flowers to make his room pretty’.
Well, after we thanked God that he hadn’t decided to ‘water his flowers’ and had picked ourselves up off the floor after hysterical laughter, I decided that I was going to buy him a special pot and some real flowers to plant in the morning.
So 6 dustpan loads, a new set of bed linen and a through vacuum later – we put the boys to bed an hour later than usual.
And today I followed through with my promise to help him plant a proper garden and purchased some pots and plants. I went to the nursery and found these wonderful potted flowers from a company called: Ability Options which is a company that provides employment to individuals who are disabled and allows them to live with dignity within the community.
You can read more about their Wholesale Nursery >>HERE<<.
So next I went and I purchased three small pots with the intention of letting all the children do one each. But Harley took one look at the dirt and went pale saying: “Ah Mum….Is it ok if I don’t do one?”
I giggled. I’d expected that.
So Lucas was in sensory seeker heaven as he helped me dig out the potting mix, and re-pot the blooms.
His ‘big boy’ job now is to water them everyday and keep them alive.
And he’s promised NOT to plant any more flowers anywhere else in the house LOL!
Enjoy these photos. I’m just annoyed with myself for not thinking to grab the camera when it first happened!
This is the side of it that breaks a parent’s heart.
Yes, having a verbal child is a blessing I admit, but having that same verbal child spend an entire day wearing his neuro-typical mask then come home being completely unable to communicate his fears, needs and emotions to you is extremely frustrating for him and for you.
He becomes non-verbal when he is in complete meltdown. He is unable to do anything but thrash, grunt groan and scream.
Because in our experience, verbal does not automatically mean ‘proficient at conveying emotions’. But in fact , I’ve noticed that it causes society to incorrectly assume that there are no hurdles to overcome so allowances are not made.
It’s been one of those days. The ones that make you want to curl up in the foetal position in bed with the covers over your head until it passes.
Or something like that.
If I were the throwing type, I’d pick something up and hurl it right now just so I could get the satisfaction of hearing something smash. And maybe when I look at the thousands of tiny pieces I could imagine them to be my anxieties being destroyed?
Who know….? Maybe not.
There just isn’t enough room in my brain to fit all the coping mechanisms that I need. There’s barely any space to look after myself.
I still don’t know what happened to trigger the explosions… I may find out…I may not. But what I do know is that watching my child sit in the back of the car kicking, screaming and crying really hurts.
It hurts both physically and emotionally because I am usually the one in the direct firing line of all of the angst, anger and rage. You’d think I’d be used to it after all this time but no, it still kills me to see my boy in a state that he is unable to find his way out of alone.
We sat in that stupid school car park long after everyone else had left this afternoon because I knew that I couldn’t possibly drive until I’d managed to bring him down again.
And so I admit it…..I walked.
Not far, only a metre or so, but far enough away from the car so that I could no longer hear the cries and screams.
Far enough away that I could try to gain some perspective and muster up some strength.
Far enough away that I could pray out loud in a voice that I could actually hear myself - one that wasn’t drowned out by autism at it’s very finest.
I took the other 2 children to a safe distance, away from the human tornado that was filling up the small space in the tiny car, and we sat in the gutter and we waited.
I had my eyes fixed on the vehicle the entire time so I knew he was safe but I just couldn’t listen to another minute. It was doing my head in.
I hate feeling that darn helpless.
Eventually the screams turned to sobs and the sobs turned into silent tears so I climbed into the backseat of my cramped little hatchback and wrapped my arms around his quivering body and held him close while he trembled and sobbed.
His head was buried in my lap, his hands were clamped firmly over his ears and his eyes were squeezed shut despite the tears that kept falling.
Together we stayed there hugging, enveloped in silence for what seemed like an eternity.
We were so close but so far apart.
Living in the exact same world but experiencing it so incredibly differently.
Both crying but for enormously different reasons.
I looked down at my mess of a child breaking his heart for reasons I may never discover and asked the same question that I have asked many times before:
Why does it have to be this damn hard?
Here it is…..I’ve decided that I will indeed start a new blog for all my non-autism stuff. I really feel the need for somewhere that I can be less serious and more lighthearted and blog about whatever the heck I feel like without letting this blog take a backseat.
So far it only contains 1 post and the “about me” section but eventually I will get it up and running.
Wonderfully Wired will still be my primary blog but the other one exists solely as a venting place and somewhere to “let a bit of crazy out” so I don’t scare you all away from here ;)
If you’re curious and wanna take a look…here tis: Click >>> HERE <<< But remember…..I warned you!
|I’ve learned that there is a gaping distance between “creating awareness” and putting yourself and your family in the firing line.|
Like the decision to “market” my blog.
I have no intention of becoming a “writer” or a published author. (At this stage).
I am not interested in advertising on my blog to make money , and to explain my reasons for blogging, let me go back to the reasons behind why I started it in the first place.
It all started (believe it or not) in therapy. I was seeing a prayer counsellor to try to make sense of my life and to learn some coping strategies on how to deal with the emotions attached to my newly diagnosed son, my recently deceased Dad and my overwhelmingly out-of-sync life.
She would set me homework every week of writing out my thoughts and struggles in the form of a letter to God and each week, I would bring it in and pray through the points with her.
Well, I soon discovered that writing it all out was really really helping me to process things and get my head around what needed to be dealt with and I felt a massive release once I’d “laid my troubles down” in print.
So this blog was born.
It was originally only something that I told close friends and family about and never intended for it to be quite so public. In fact, in the early days, it was only accessible to those that I chose to give the link to.
During this time, I started reading other Mother’s blogs who were walking a very similar path to mine and many of their words resonated with me. So gradually I removed my privacy settings and started to leave comments on other blogs.
Then before I knew it, I was being accepted into the very warm and inviting autism community with open arms and I felt all warm and fuzzy.
Very soon, my blog roll grew, my stats went up and I soon realised that there were actually people out there who cared about our little lives and it felt good! I so badly wanted understanding for my boys and for their struggles that I jumped into the role of advocate with both feet without considering many of the consequences.
There. I said it.
Writing is an extremely subjective field. People either love what you write or they hate it and usually there is no middle ground. And because I started to link to my blog on FB, the knowledge that people who I would see in my everyday life could possibly now read it, has caused me to be a lot more censored in my writing.
I stopped writing about the things that mattered to me and started writing watered down versions of what I really wanted to say and overindulged in general and no-confrontational topics. Or I poured out my heart causing those that I know in real life to either avoid me, or change their opinions of me because the mask I wore every day had been removed.
But the thing that is first and foremost in my mind with every.single.post that I write is the words of someone who I once held dear. This friend wrote to me on several occasions to tell me that I was damaging my children by writing about them and that I should’ve had more of a filter with what I wrote about.
And yes…I agree on some levels.
There were times that I probably could’ve perhaps provided less personal details but I learned from them and deleted damaging posts from my archives. But her words stung me because I so desperately wanted to be a great mother and felt like my every move was under scrutiny and open for public judgement.
But I couldn’t very well complain could I?….I’d done this to myself after all.
None of these friendships were in any way related to each other, none of them occurred at the same time and it hasn’t escaped my attention that I was the only common denominator in all of these friendships.
Says a lot doesn’t it?
Well…yes, and no.
I’ve since realised that all of them HAD to come to an end because they were all toxic on some level and not what I needed in my life. With most of them, I was being controlled, manipulated and completely walked over. I rarely stood up for myself and took a lot on board that I didn’t really need to. I listened to every word that they said and constantly felt guilty about who I was, what I thought and what I believed. It changed me into a guarded, sometimes suspicious and fearful friend and it really really hurt.
It has greatly affected my writing and combined with the fact that people who were once oblivious to my blog now know about (and sometimes read it), I have often wondered why I didn’t just leave well enough alone.
And with that in mind, I’ve made the decision to stop publishing this blog on Facebook and to go back to the safe confines of the autism community. I’m going back to what I know and understand, and as far as possible from the scrutiny that I have brought upon myself by putting us all out there.
It’s going back to the early days of my blog being read only by those who care about us and want to stay in the loop and to those that have subscribed because they are interested in reading about us and our corner of the world. To those that put “aspergers”, “autism” and “SPD” into search engines and those that can offer support, advice or a cyber hug.
I know this will greatly affect my stats but I no longer care. I’d rather be read by 5 people who want to read as opposed to 300 who are just being nosey.
My real life friends are extremely cherished by me and they know who they are, and I hope that they will continue to support us whether they are directly affected by autism or not.
This blog will still update on my Wonderfully Wired Facebook Page, but not to my personal Facebook profile. I will also continue to tweet and update on Twitter because most of my followers are autism related, and I’m considering starting a new blog for all my “non-autism” posts.
I’ll keep you posted on that when I decide
But for all of my regular, loyal readers, nothing is going to change for you, my blog isn’t going private it just won’t be advertised to anyone that doesn’t have an active interest in it.
So in saying that, I hope to see you all back here soon but if not….I understand.
Love to you all
In keeping with my promise to myself to blog once a week about something other than autism, I decided this week that I was going to finally get around to doing one of the decorating ideas that I have been wanting to do for a long time.
And the best part is that I was able to combine two of my favourite past-times for this activity.
Charity shopping and sewing. (Well…..ok… So it’s not REALLY sewing….I cheated, but if you read on, you’ll catch my drift .)
So there’s sewing, and the other great love that I also got from my Mum is op-shopping. (Opportunity shops).
I simply LOVE to poke around second-hand stores….I find the thrill of the chase exciting and absolutely adore finding bargains and one-of-a-kind pieces. I admit that sometimes you really have to pick through a lot of junk to find a gem but I think when you do – it makes it all worth while. A lot of my house is decorated with eclectic finds that I have made over the years.
So a couple of weeks ago, I came across a beautiful appliqued white double bed quilt cover. Now, I am a big fan of embroidered fabrics and appliqued linen so when I saw the $6 price tag, I couldn’t walk past it. I don’t have any double beds in my home but I knew that there would be SOMETHING that I could do with this fabric as the colours were all very similar neutrals to what I already have in the house.
It was packaged up in clear plastic to keep the dust off it and I assumed that this design was all over the cover but I was wrong. In fact, when I got home and opened it – this is what it looked like:
I was disappointed to discover that the design only covered the bottom left hand corner and that there were only a few flowers on the entire cover.
But for only $6, I could hardly complain!
Anyway, I had a few ideas in my head that were all to do with our new guest room (Harley’s old room).
I knew EXACTLY what I was going to do!
The colours in the floral design went perfectly with the colours that I already have in the guest room.
Can you see where I’m going with this?
(Oh….and by the way – see that frame? It cost me $3 at the same charity shop months ago.)
Anyway….I had bought this blue floral quilt cover that is on the guest bed on an earlier op-shop trip for only $5.
B I was always disappointed that it didn’t come with a pillow case. But I still bought it because I loved it and figured that I’d work something out eventually.
I threw my latest purchase onto the kitchen table and went and rummaged in my wardrobe until I pulled out what I was looking for.
These 3 blue cushion covers that I had bought on yet another trip to the charities that were only $1 each that still had their original price tags attached!
They were brand new so I bought new inserts and they were good to go.
Now….back to my plan
I decided that the beautiful appliqued flowers needed to be on these cushions but I didn’t much fancy the idea ofsewing them on so I turned to my trusty iron-on fabric webbing.
I took a deep breath and took to the quilt with a pair or scissors!
There was no turning back now!
I carefully cut around each flower.
Then ironed on the first layer of adhesive.
After that, I cut closely around the fabric until I got the shape that I required.
I cut as close to the stitching that I could without nicking it so it wouldn’t fray.
Next I cut around the shape again to ensure that the backing wasn’t going to stick to anything but the cushion.
Lastly I peeled off the backing paper to reveal the webbing and then ironed the appliques right side up on the cushion covers.
I’m pretty darn happy with how they turned out! And no bad for less than $3 per cushion!
I had some flowers left over so I racked my brain to try and think of somewhere else I could use them and my own bed came to mind.
On our bed was just a plain white quilt with appliqued trim and could do with some livening up.
So I searched in other rooms to see if I could find what I was looking for. And hooray I certainly did!
This was my bed before:
Pretty boring hey!
And I found these plain white and lime green coloured cushions were sitting up in another cupboard gathering dust
from when I’d rescued them on yet another charity crawl!
And so now – here is the after:
I LOVE it!
And here endeth my post for today. Hope you’ve been inspired to walk on the wild side yourself.