I remember…..

This was taken a few weeks after we received Harley's diagnosis. The same age as my reader's child.

I often get emails from strangers who have read my blog and just want to connect by telling me their story. They write and tell me how autism affects their lives and often the parallels between something I’ve written and what they are experiencing in their own worlds is fascinating.

I love receiving emails because it motivates me to keep writing and to keep spreading awareness one reader at a time.

I opened my email a couple of days ago and there was a new message from a brand new reader who had stumbled onto my blog during one of those (I assume) frantic 3am google searches.

They wrote about their child who has only been diagnosed as recently as 2 months ago. They don’t have any support networks as of yet and are not in contact with any other families that are walking a similar path to them. They feel isolated and frightened.

So naturally I sent them the link to Welcome To The Club written by the amazing Jess over at Diary Of A Mom. Because EVERY new parent should be handed that letter along with their child’s diagnosis. It is vital reading.

But do me a favour?….Finish reading this post before you click over there because once you’ve read Jess….you won’t want to come back

The parent who emailed me desperately wanted to know that there is a light at the end of the proverbial tunnel. They were anxious to find out when and if their child will grow out of this overwhelmingly exhausting stage and wanted reassurance that it will all be ok.  And to be completely truthful – I was unsure how to answer this at first.

I didn’t want to lie and tell them that the meltdowns, tantrums and sensory issues would just magically disappear one day and that life would become all honky dory all of a sudden. And I didn’t want to give them any false hope by telling them that they can expect their child to become “typical” overnight, but I wanted to assure them that what they are experiencing is a normal part of the early days of discovering that you have a child on the autistic spectrum.

I wrote of the feelings of loneliness, of grief and of self-doubt and I told them that I truly understood. I recognised the fear, the anxiety and the emotional overload that was evident in their email and I was forced to go back in my memory to when Harley was first diagnosed at exactly the same age that their child is now.

I remembered the meltdowns that seemed to go forever. I recorded some of them on my mobile phone so I could show it to the paediatrician because it felt like NO-ONE would believe that there was something “odd” about my child. He watched them and nodded knowingly and told me that I would eventually find a way to manage them.

I didn’t believe him.

I remembered the punch in the guts when this very same Doctor told us that our child was “different” and that we would need to adapt as he handed us a list of therapists, specialists and blood tests request forms. I remembered the desperate feeling of abandonment, and feeling overwhelmed and exhausted all at once.

And I remembering thinking that we’d never make it.

But you know what? Through forcing myself to go back and deliberately remember those early days – I was able to see for the first time just HOW FAR WE HAVE COME!

And it got me all excited!

I remembered these feelings and thoughts, but was able to recognise that we don’t live there permanently anymore. We visit them occasionally and we will always be tied to them in some way, but we have moved on to become stronger, wiser and a lot more street smart.

And so YES, I was able to see that there IS a light at the end of that darn tunnel. YES, it WILL get easier, but sometimes it’s probably more likely a case of our challenges seeming more manageable because we now have experience and adaptability on our side.

Back in those early days, we weren’t as capable of predicting possible outcomes in the same way that we can now. We now know precisely what Harley’s triggers are and we either avoid them completely or find other ways around them to make them work for us. We have developed a “tool kit” that is custom designed for him and we rarely go out unprepared these days.

We’ve altered our expectations and have finally realised that sometimes it just isn’t worth pushing stubborn elephants up hill anymore.

And because of this I would say: YES. There is hope. There is HOPE and you will be ok.  My heart breaks for the pain they are in but I KNOW that they WILL be ok.

Because love conquers all and they have more than enough of that for their child or they would never have cared enough to write.

Confessions of a grumpy mother.

Just a little warning between friends: don’t read today’s post if you want to read something happy and upbeat…you won’t find that here.

I’m waaaay over tired and frustrated and more than a little bit peeved today. I probably shouldn’t even be anywhere near a keyboard in my current state of mind but ….meh…

Today is part 2 of Harley’s cognitive and behavioural assessment at the psych clinic at the university.  I am sitting in the waiting room feeling sick, angry and agitated. There is a little girl beside me snorting every 2 minutes while her father sits by saying nothing. If that were my kid, I’d be whipping out a tissue and telling her to blow, not allowing her to make that insidious noise.

Told you I was cranky.

It’s partly due to lack of sleep and partly due to nerves.

I’m not nervous about the results of the assessment but more the toll that it’s going to take on my already massively sleep deprived child and the crap that I am going to have to wade through to bring some semblance of peace back into the household afterwards.

Last night was an absolutely shocker. He was awake pacing the hallway and crying and intermittently screaming for HOURS on end.   At 2am I eventually stuffed an earplug in my ear and a pillow over my head in a desperate attempt to get SOME sleep but that was short-lived too.

He told me that his brain wouldn’t switch off and that nothing he tried was working. We prayed together, we did the quiet radio in the background, the soft music, the deep pressure massages, the weighted blanket, the brushing and the writing and drawing your thoughts down on paper before sleep.   Heck….I even sung to him! And all of this combined with sleeping tablets…..didn’t make a scrap of difference.

Finally I gave in and took him into my bed with me and even then he constantly reached over to check my face and see if I was asleep. Because EVERYONE loves a slap on the cheek every ten minutes…sigh….It was clear that I wasn’t going to get any sleep either. He had decided that if he was awake – I had to be awake too. That’s obviously the stupid unspoken rule here.

And of course Mr Patient was interstate…..that always adds another level to the anxiety that he experiences and of course I have a big day ahead of me today.

Anyway….once we arrived at the clinic today, I spoke to the psychologist privately before Harley went in. I told her that he had barely slept a wink last night and she replied that lack of sleep would greatly affect the results of the assessment and suggested that we postpone AGAIN! (this is the third time).

I actually laughed in her face.

Does she think I can control this? That I should have maybe done something MORE to avoid another sleepless night before an assessment like this?

Seriously?

Do people think that I exaggerate the seriousness of the sleep issues? That I am trying to extract some sort of sympathy? Because honestly – I  don’t know anyone who would wish this upon their worst enemy. I didn’t choose this life and I’m doing the absolute best that I can with what I have got. If I could fix it, I would have done so years ago. NO-ONE is that stupid.

And surely the fact that every single time we have come here – anxiety has been at play and THAT is the very thing that should be going in her notes. The teachers need to know this stuff. They need to know just how greatly changes affect this child. They need to be given some insight into just what goes on in that head of his and see that his potential is greatly masked by the crippling anxiety that engulfs him frequently.

I don’t want to give my kid more drugs, I don’t want more ‘advice’ I want the results to show that he does not cope under pressure and I want allowances made for him so that he CAN reach his full potential. Is that really too much to ask?

Besides: Isn’t that half the point of doing this assessment in the first place?

Sorry loyal readers. You got me on a grumpy day, I promise to be more upbeat and thankful tomorrow but I KNOW that there are a lot of you also throwing your hands up in the air screaming “Aaargghh…WHAT NOW”  when autism throws you another curve ball as it has done to us this week.

And if nothing else…..at least now you know that you’re not alone.  We are all in this together. Every step of the exhausting frustrating way.

~~~

I’m ever so grateful that tomorrow is a new day with new mercies and greater expectations.    Thank God that His mercies are new every morning. Without that promise – I don’t know what I’d have to cling to.

Hope you all have a wonderful weekend. Check back here next week for the cheerier, more relaxed and less bitter Fiona X

Distillation in verse.

It’s ok peoples

You don’t need to worry about me….I’m not in a terribly bad place….well not exactly a great place either, but it’s nothing to be concerned about.

I was in a bad (ish) place earlier on but I have worked through a lot of the ‘stuff’ and ‘nonsense’ and some of it has been dealt with.

Some of it

I’m just attempting to clear my head of the thousands of crazy, ridiculous,persistent and nagging thoughts relating to certain circumstances that have plagued us as a family lately, and for me personally – I find that using the medium of poetry is particularly cathartic.

Head is spinning,

Eyes are sore,

Tired of crying,

I can’t take any more.

.

Questions looping,

Answers not there,

Frustrated, angry,

Not wanting to care.

.

Desiring, needing,

Wanting some peace,

Anger is building,

It needs to be released.

.

Tired of fighting,

Nothing seems to work,

Wanting to escape,

But this ire still lurks.

.

Praying, pleading,

Wanting to be free,

Crying and hurting,

This really isn’t me.

.

Sleepy, weepy,

Knowing this will pass,

But not wanting to wait for it,

Is that too much to ask?

The response we never knew.

I got to see a whole new side of autism this week. One I’d never really witnessed to this extreme and I’ve got to admit that it kinda unnerved me. Lucas has been so sick this past few days that he completely shut down and became non-verbal.

I have always known that in times of stress or illness that Harley almost always chooses the fight response and that Ella takes flight but until now – I hadn’t quite figured out which way Lucas would go in times of crisis.

But now I know. He shuts down and takes flight and it’s pretty damn scary let me tell you.

Daddy was very concerned

For those that haven’t already heard – Lucas’ fevers ended up landing him in hospital to undergo a series of tests, and at one point the Doctors were concerned that he might have  Guillain–Barré syndrome as he was unable to stand or walk or bear any weight at all on his legs. He was also unable to urinate and the Paediatrician couldn’t get a reflex response from his knees or his ankles. But this was only ever a temporary diagnosis awaiting test results for confirmation and we prayed HARD that it wouldn’t stick.

This all happened on Lucas’ 5th birthday on Thursday which is actually how we knew that he wasn’t faking anything. What child wouldn’t want to walk up to their parent’s bedroom to open their gifts? What child would lay disinterested on the floor not absorbing the excitement that was all around him?

The paediatrician originally told us that Lucas would have to undergo a lumbar puncture and I was feeling sick about it. Thankfully though, it didn’t come to that because they were able to prove through the results of all the various other tests that he has “Influenza Myositis” which basically means that his muscles are inflamed as a result of the particular strain of flu that he contracted. This is why his feet and legs couldn’t hold him and this is why he was so weak and lethargic.

***

The entire time that Lucas was undergoing tests and being monitored – he lay in the hospital bed completely glassy-eyed and non-responsive. He would look straight through me and stare into space. It was a real case of the lights being on but nobody being home! He is usually such a lively and active little boy – this was NOT him at all.

Slumped in Mummy's arms. A familiar pose.

After each blood test (during which it took 5 adults to hold him down) he would scream for 10-15 minutes and then slump into a long, deep sleep where he didn’t register anything at all. I would tickle his feet and legs and he wouldn’t respond. This was frightening because Guillain-Barré usually starts at the feet and the paralysis works its way up until the entire body is affected in what sometimes becomes permanent paralysis. So for him to not even flinch was not good at all.

There was so much going on in and around him that he was simply unable to process it all so he shut down so that he didn’t have to process any of it.

Otherwise known as: Survival mode.

He spent hours laying in my arms dozing in and out of sleep and didn’t seem to register anything that I said to him. He would occasionally look intently at me without smiling, gaze around the room and then drift back off again.

I had no choice but to trust God and pray that he would be healed!

And thank GOD that things did start to improve and he was sent home late yesterday afternoon to continue slowly recovering in his own bed.

He certainly gave us all a fright!

Since he has been back home – he is smiling again, registering faces and even talking a bit.

He’s still not well but is a completely different child. It’s amazing how different he is when he is surrounded by that which is familiar to him.

There were people praying for him all over the world thanks to the wonderful friends that I have and we had so many offers of meals, help and support that it was simply overwhelming. I am overflowing with gratitude to each and every person that contacted us in some way during this unpredictable and confusing time.

Thank you

God is good and he heard our prayers. We are thrilled that Lucas’ final diagnosis is not as serious as first mentioned by the Doctors and are so thankful to have our little boy back again. I am so pleased that God orchestrated it in such a way that my Mum has been here the entire time to help the family to run smoothly too. Harley is very close to my Mum and he needed the assurance of someone who “gets” him nearby during all of this turmoil.

Harley has been unwell himself and as the days pass by – we have noticed him limping on his legs and complaining of body aches and pains too.

*sigh* JUST what we need – another sick child!

At least now we know that we can manage it and that he probably has a similar thing to what Lucas has endured.

Since yesterday, Harley’s words have become less frequent and they are gradually being replaced by moans, groans, grunts, screams and crying. It is clear that his condition is worsening and his little body is handling it in the way the HE responds. Not by taking flight but by fighting and taking fright.

I’ve been kicked, punched, slapped and growled at this afternoon and he has punched his brother’s helium birthday balloon in frustration and anger until his face turned red with exhaustion. He is stomping around the house like a bear with a sore head and kicking everything in his path.

Poor little Lucas has been in the firing line most of the afternoon and has taken shelter in Grandma’s arms on a number of occasions. Everybody suffers when Harley is unwell or unhappy. Yep everybody.

*Sigh*

If only Harley wasn’t a fighter.

Taking flight is by no means good but at least it’s more socially acceptable and no-one gets hurt.

I know that this is the way that Harley is made and that even he can’t always control it , but oh-my-goodness…..this violence and aggression really bites.

Please get well soon Harley. We want our beautiful, affectionate charming little man back.

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

BUT I WANT IT NOW!!!!

You know those ladies that stand at the end of the aisles in supermarkets with their little white stands, their aprons, their mini plastic cups and teaspoons and their food samples?

Well…that was me 5 years ago!….Yep! I was a demo dame

I was also a merchandiser and a mystery shopper. I worked for a marketing company so had a different client each week so there was a lot of variety in my job.

I promoted everything from yoghurt to dishwasher tablets to printers to chocolate bars!!

I used to meet several new people every day and it was the absolute perfect job for me. I loved talking to the customers and the other demonstrators and it gave me a real boost being able to enter the adult world even if it was only briefly!

I only ever worked from 10-2 and never on school holidays and it fitted in perfectly with my busy schedule. I worked up until a week before Lucas was born and even heavily pregnant – I LOVED it!

I remember one time when I was about 8 months pregnant, I had a sticky date pudding demo in a supermarket that required me to have a microwave up on my stand and I arrived early to start setting up and waddled over to the freezer section to collect my samples. I turned around and noticed that there was a guy in his early 20s following me.

He stood there and watched me struggle to set up my stand and as I was lifting the microwave BY MYSELF – 8 months pregnant – onto the stand he walked over to me and started to speak.

“Great” I thought….he’s going to offer to help me, so I set the microwave back down again.

I smiled at him and looked at him expectantly and then he said “How long until you’re set up – I’m hungry and those puddings look goooood!”

It hadn’t occurred to him to offer assistance. He was only worried about his stomach!

It’s was so infuriating at the time and I remember almost throwing his pudding at him when I finally got it ready but I quickly forgot about it and got on with the rest of my shift.

For some reason, this memory came back to me last night because I had a very similar incident with my little Harley right after dinner.  

The children had just finished eating and I had started rinsing and stacking their dishes on the sink , wiping down the table and sweeping the floor when Harley comes over to me completely oblivious to the work going on around him and says:

“Mum, it’s time for dessert. Why haven’t you got my dessert? What’s for dessert? Is it ice-cream or is it yoghurt? I think I’d like ice-cream tonight. But can I have both? I can’t decide. MUMMMMMM, Why aren’t you getting my dessert?.We ALWAYS have dessert straight after dinner. I’m HUNGRY! ” and started to get into a real flap.

He then took a breath and stood in front of me with his hands on his hips and an expectant face not knowing why he had made me so angry.

I asked him if he had noticed me clearing and cleaning up and if he thought it was possible for me to get dessert at the same time as doing all of these things and he replied that he didn’t know.  I then told him that he needs to learn a little bit of patience and that he needed to ask more nicely next time and to not just assume that things were going to go his way all the time.

He paused for a moment and then said….“May I have dessert now PLEASE?”

From where he stood – his request was perfectly ok and he couldn’t understand what the fuss was all about.

I looked at him again and said: “In a moment honey, just let me turn the dishwasher on and wipe down the bench, I’ll take care of it soon”

He rolls his eyes at me and muttered: “The things you have to do just to get a bit of sugar around here”.

I was ticked off but I ignored it and chose not to let it penetrate but realised that there is still a lot of social training that is required in that area. And I smarted at the realisation that I would probably have to endure a lot more of these type of situations before he completely “gets” it.

They (whoever they are) say that this is very common in individuals diagnosed with aspergers syndrome. In fact a lot of the diagnostic criteria is obvious in this little scenario.

For example:

1. Socially and emotionally inappropriate behaviour: Demanding what he wanted NOW and not being willing to wait for it, and getting annoyed when it didn’t happen immediately.

2. Limited interests or preoccupation with a subject: Not being able to think about anything other than dessert and going over and over it until it happened.

3. Repetitive behaviors or rituals: His constant chants of : dessert, dessert, dessert, dessert. NOW!

4. Peculiarities in speech and language: Talking out loud about what he was going to be having – asking himself a question and answering it in the same sentence. Repeating his request several times over.

5. Problems with non-verbal communication: Non-verbal communication involves perceiving body language and acting appropriately. He didn’t notice that I was otherwise engaged in cleaning up.

6. Inflexibility or rigid thinking: He couldn’t understand why his needs were not the most important thing in my eyes as well.

7. Fear of changes; sameness in daily routines: He said:  “We ALWAYS” have dessert straight after dinner.

I can now see that Harley was not so much being a pain in the butt as he was just trying to make sense of the whole thing in his head.

Harley was noticeably confused as to why I was annoyed with him and even after I tried to explain it – he still didn’t understand what the big deal was! I guess it’s something that I will have to keep working on with him.

But I have to say that I am thrilled that I am now able to look past my initial annoyance and see that this wasn’t just a case of him being a little brat!

And all day today – I have been wondering about that young man in the supermarket. I have wondered about his short-and-to-the-point speech and his complete lack of awareness to the situation that was obvious to almost everybody else.

I suppose I’ll never know!

Mummy needs a valium.

 Righteo, I need all my ASD mum friends to tell me I’m not alone on this one because I’m completely over the drama that enfolds every morning as we get ready to leave the house.

This was how this morning unfolded…

It all started when the boys decide that it’s fun to get up before the sun does and make sure that they make as much noise as possible to ensure that the entire neighbourhood knows that they are awake.

6:15 am – I hit the snooze alarm for the  3^rd time and catch another 9 minutes sleep before dragging myself out of bed. I turn on the coffee machine and stumble over to the pantry to start making lunches.

6:24 am – I walk out to the kitchen and break up an argument over a green matchbox car. Never mind the fact that there are 2 gazillion other matchbox cars to choose from – no, they both want the GREEN one!

6:30 am –  lunchboxes packed and I move onto breakfast and ask the children what they would like only to be met with crying and moaning because Harley was in the middle of a game and didn’t welcome this distraction. He throws himself onto the rug banging his fist screaming “I’m not hungry, leave me alone”.

6:35 am – I tell him that it’s not time to play but that if he gets ready really quickly, that he can play then.

I pour out Ella’s cereal and start the bargaining process with Lucas.

He tells me he wants weetbix so I prepare it and serve it up but somewhere between pouring the milk and carrying it to the table, he changes his mind and erupts into tears and puts his head in his hands declaring that it “sucks”  and that “I’m so mean” and that he wants toast instead.

I tell him that it’s not on offer and that time is ticking so he needs to eat what is in front of him. He starts crying so I walk away and go back to convincing Harley to eat.

Harley is not in the mood for rules so he throws a toy car at me hitting me on the foot. I yelp in pain and hop over to the kitchen to continue the breakfast saga.

6:45 am – After making the decision FOR him and pouring out his gluten-free cereal, I end up sitting in between the boys and spoon feeding them one by one to ensure that they eat SOMETHING!

Bear in mind that these boys are almost 8 and 5 and WAY too old to be spoon fed.  * rolls eyes*

7 am – The boys have now wasted half an hour with silly tears and tantrums and are still only half way through their cereal and it’s time to start getting them dressed.

7:10 am – They finally finish eating a whopping 40 minutes after I first made breakfast. They both have tear stained faces and are not in the best of moods because “the rules” are coming between them and play time. I wash their faces and hands and tell them to go and get dressed into the clothes that I laid out last night.

7:15 am – I head up to the shower and instruct the boys to start getting dressed into their clothes that were neatly ironed and folded.

7:30 am – I walk out of my bedroom fully showered, dressed and my wet hair in a towel.

Ella tells me that while I was gone, all Harley did was play with his cars and that he punched her when she reminded him what he should be doing.

I walk into the family room and see Harley lying on the rug making Brmmmm noises with his cars. He has scrunched his once ironed/folded shirt into a “pond” and dive bombs trucks into it with a “shwwsiiish” sound effect. Lucas is lying next to him with HIS clothes also scrunched and has turned them into an obstacle course for the cars running them over and over them and around in circles.

7:35 am – I start to cry but realise that I still have 25 minutes before we have to be out the door so I try to keep my voice steady as I go and re-iron the now ruined shirts and instruct them both to at least put on their pants.

7:40 am – I finish ironing and walk over to hand them to the boys and notice that Lucas has at least removed his pyjama pants but is running around half naked. I tackle him and put underpants on him and throw his jeans at him telling him that he needs to put them on.

He struggles and struggles with them crying and moaning that he can’t do it and begs me to help him.

I refuse and tell him that he needs to learn to do it himself. He cries for another 20 minutes but eventually gets his entire outfit on all by himself. I cheer and give him a high five and turn my attention to his older brother who is STILL in his pyjamas playing with those stupid cars.

7:50 am  – I grab the cars and threaten to throw them all out and tell Harley that he’d better get dressed or I would take him to school in his pyjamas. (And yes, I did that once but that’s a whole other blog post!)

I hold him tightly between my thighs, standing over him and force his legs into his trackpants whilst he squirms and cries and hits me repeatedly. Next I manage to get his shirt over his head and release him to look for his socks.

Stupid move on my part!

As soon as I let him go, he high tails it to his bedroom and slams the door sitting up against it so I can’t get in. I spend 5 precious minutes coercing him out so that we could attempt to leave on time and finally I’m successful but his bedroom has paid the price.

His bedding is strewn everywhere and the contents of all his drawers are now piled up against his door so I step over them gingerly and scoop him up into my arms.

He snuggles into my shoulder and starts weeping. He tells me that he doesn’t want to go to school because it’s too hard and that he has no friends.

I start crying too. My hair is still wet and the towel has fallen off my head revealing a mass of wet, messy, stringy tendrils and I really REALLY don’t care anymore.

I carry him out to the family room and we pray together asking Jesus to give him a peaceful day and he settles a bit and looks over at Lucas who is now in tears himself because Harley is still gripping the same stupid green car….ARRRGGHHHHH!!!!

Lucas slams into my thigh and demands to be picked up too so I put Harley down and crouch down to embrace both of them at the same time.

I look at my watch and see that it’s now 8:12. We were supposed to be out the door at 8:05.

I realise that none of them have cleaned their teeth so we make it a “race” to see who can do it first. I give my hair a quick blast with the hairdryer and somehow manage to clean my own teeth at the same time.

8:18 am – we run out to the car throwing bags and lunch boxes in and I drive as fast as I can only to pull in the school car-park right as the 8:30 bell rings.

We are officially late……but we’re here.

I need a triple shot coffee with a dash of valium….

Seriously.

What kind do you have?

Yesterday, I had 2 lovely ladies come to visit me in the home as a follow-up to Lucas’ CATS assessment and consequent diagnosis of aspergers.

image from picturesof.net

Although I was pleased that someone was at least following up with us – I was annoyed that it was really just a formality and nothing concrete actually came from it at all.

We wasted spent almost 2 hours discussing the family dynamic, the tools and methods that we implement in the day-to-day running of the household and they suggested a few new ideas to me. (Which I didn’t have the heart to tell them had already been tried but failed here!)

One of them asked me to rate from 1-10 how well I cope on any given day with 1 being not coping at all and 10 being coping really well.  I asked: “Do you mean on a weekday or on a weekend”?

She replied that it didn’t matter.  I nodded my head and emphasised that it DEFINITELY mattered because my answers to those 2 different days would differ dramatically.

“How so?” she enquired.

“Well, if it’s a normal weekday and I only have Lucas home…..I would say that I’m about a 9 or 10. He is a very easy child, extremely self entertaining, non-demanding and compliant. But if it is a weekend….I would change my answer to  3 or a 4.” I answered.

“Oh really? “ She seemed surprised. “Why such a dramatic drop?”

“Because that’s when all the kids are here and they are bouncing off each other and it’s also when our most challenging child Harley is home”. I replied.

* I had already told them in the preliminary discussions that Harley ALSO has a diagnosis of aspergers so I think she knew where I was going.

Her next question was: “What would it take to move this up to a 9 or a 10?”

I thought she was humouring me so I answered that the only way for that to happen was for someone to come and take Harley for a while and give us a break. She must have been serious because she wore a very concerned face!

I thought she was going to soften the blow a little but the next part of the conversation really annoyed me.

She had a printout in front of her with a listing of all the places in our area that provide relief to families such as ours and one by one she read them out to me only to see in the fine print of ALL of them, that to be eligible to access these,  the child had to have been given a diagnosis of developmental delay as well as autism. But because it’s ONLY autism, that their hands were tied.

She was preaching to the choir because I already knew all this. I had researched it all myself a few years ago when Harley was in the prime of un-controllable behaviour!

Thankfully….I’m actually ok at the moment.

I know I have had a few emotional posts recently and that Harley has been experiencing extreme anxiety lately, but believe me friends: I’m usually over it by the time that I have published the post because just writing it out is a wonderful release for me.

The last round of questions centred around the people in my life that I turn to for support.

I eagerly told her about all of you. I also told her that blogging has been my absolute life saver! I explained how awesome it is that because of the different time zones that we all live in – I am able to access support any time of any day .

She asked me if there were any local support groups that I attend and I gave an emphatic NO! And the reason?   Too many of them have a Lucas version of autism and not many seem to have a Harley. I felt like NO-ONE understood what it is like to parent a verbally and physically abusive child.

Sure….he’s come a LONG way, but there’s still a lot of distance to cover yet!

And I can tell you from personal experience……If both of my boys presented with aspergers like Lucas did – I wouldn’t understand the true meaning of words like emotionally overwhelmed, sleep deprived and mentally exhausted in the way that I do now!

If you have a Lucas.…I’m happy for you. Really I am.  I KNOW that it’s not all plain sailing for you either. Don’t get me completely wrong: Lucas has his fair share of challenges too, it’s definitely not all roses……but nothing on Harley!

But if you have another Harley……you need a break too.

Here’s a hug for all you mother’s out there whatever child you have. (((( )))).

So…..tell me, what kind of child do you have?

Meh

So, I had a post written tonight, but I decided not to publish it and deleted it instead.

It wasn’t very cheerful. It was something that would have been more at home in a personal journal than on the world wide web.

It centered around the exhaustion that I am experiencing at being the NT interpreter in this all aspie house.

It really is tiring and I do get sick of the “me-me-me” attitude that seems to reign here.

I told them all to suck it up and walked out. Of course I didn’t get far before guilt called me back!

But they drove me out.

I’d had ENOUGH! And I didn’t hesitate to tell them all so.

I told them that DAILY I have to do things that I don’t particularly like and that being in a family is a massive game of give and take.

I felt like I was doing all the giving and they were taking, taking taking.

I put my foot down I did!

There were some other things that occurred this weekend that added to my already miserable disposition but nothing I can’t handle.

I’ll finish with a quote that I heard at church this morning that really helped me. Especially when life is “challenging”!

“Whenever you feel like you’ve let God down, remember that you were never holding him up in the first place. He upholds US”

Cool eh!

Hope you all have great weekends and I promise to be nicer tomorrow.

Promise

I’m the Mayor of this here Madhouse and I want things done MY way! Kapish?

Sometimes I can be a little feisty.

Ok, so that was the understatement of the century!

Alright, alright, a LOT of the time …giggle….giggle….

Mr Patient and I often lament that in most marriages, there is usually once peace loving partner and one not so much!

But in ours, we obviously didn’t get that memo in time because we are BOTH a little feisty. And no peace maker willingly resides here.

My dear old Dad used to jokingly say to me that HIS Dad told him that “Anyone can win an argument when they know they are right, but it takes a DAMN good person to win one when they KNOW they are wrong”

And we seem to have taken that literally and put the theory to the test.

Now, before you get the wrong idea about life in this house….let me just say that things are NOT what they used to be.

In fact, things have never been better in that respect. We have acknowledged that fighting and yelling is damaging to our relationship as well as to the children and we are both working really hard on it.

It’s taken a concerted effort on BOTH of our parts to sometimes let the other person off without a blow up.

Now….let me set the scene for yesterday and start by stating that Mr Patient and I spoke at length about this yesterday and I have his 100% permission to blog about this.

He knows exactly what I am writing and has said that he is fine with me blogging it if it helps another family.

Right.

We went to church as a family yesterday and I loved it.

I call myself a “Repressed Sanguine” with a heavy sigh because there’s still a large chunk of me that resents that I am (according to Laura) an NT island in a sea of aspies.

And my sanguine nature really really wanted to stay after church for a coffee and chat with my friends and catch up.

I’m such a people person and I still sometimes think it’s a sick joke that I have a family full of aspies.

But not only would my boys not cope with this…..my big boy especially wouldn’t cope.

The very second that church finished he turned to me and said “I’ll collect the kids from Sunday School and meet you at the car”.

“Right…so I guess I’m not staying for coffee then?“ I snapped and stormed off.

On the way home, I sat in the passenger seat of the car with my back turned to him sulking.

Once we walked back into the house, he innocently asked me when I was going to fold the washing that was piled up and I completely lost it.

I walked around the house for the next few hours slamming doors and stomping around mumbling about how I’m such a slave and how nobody ever helps me and generally just how much my life sucks.

Meanwhile, Mr Patient seemed to have (uncharacteristically) shut down completely and didn’t play along with my childish game.

In fact – He totally ignored my hissy fit altogether! Which of course made me even madder!

God pulled me up on this and reminded me of the notes I had taken in the sermon this morning and told me to go and re-read them.

I did , and I realised that this was bigger than me.

However, it still took quite a while for me to simmer down.

Whilst I was still hopping mad, I wrote an email to my close friend Lisa (who is an adult with aspergers) and told her how hacked off I was and how unfair I thought they all were being to me.

I complained to her that they had all gone into their own selfish little aspie havens and IT WASN’T FAIR!

I was still ticked off that I didn’t get to stay after church and I wanted someone to validate my rage.

She wrote back to me in the level headed way that she always does and threw the possibility out there that maybe just maybe, there was something in the sermon that had challenged him and he was trying to process it and me constantly talking at him and hounding him was not allowing him to fully process what he’d heard.

Um… no.

I thought he was just being a pain in the butt!

I sheepishly admitted that it hadn’t occurred to me that he was possibly trying to filter out all the jumble that had gone on around him and actually process the sermon in his own head and make sense of it.

This conversation brought back memories for Lisa of her childhood growing up in the church and out of it this post of her’s was born

**

Anyhoo, once I had gotten over my own stupid tantrum, I was able to sit down and have a chat with Mr Patient and work through this once and for all.

His face lit up when I asked him if he was trying to process this morning’s sermon.

He said “Yes, actually I am. There were some excellent points in there that I was trying to apply to our lives”

He was obviously pleased that I now had a better understanding of what was happening to him.

He then said “So….have you finished ranting yet?”

“Um….yes….” I said suddenly embarrassed at my behaviour.

“And I’m really sorry for carrying on like that. Will you forgive me?”

“Of course!” He replied kissing the top of my head.

” I’m really sorry too, and Fi, I wasn’t having a go at you about the washing, I was just delegating something that I’d seen that needed doing so it was one less thing for me to have to think about this morning. Because, once I can see a cleared house, my brain is then able to start to sort through the swirling thoughts and make sense of it all.”

“Oh”. I said genuinely surprised.

**

Because for me , I can process something I’ve heard immediately.

I am able to tune out anything else around me and focus only on what I need to at the time.

This concept he was describing was totally foreign to me?!

I spent the afternoon thinking more and more about this and it occurred to me that I have NO trouble giving grace to my kids when they act or say something irrational because I KNOW they are wired differently to me.

And there are still days where Mr Patient vehemently denies that he could be on the spectrum, and there are people in his life that disagree with me that he is at all, but there are also a lot of days like yesterday where he is willing to own the diagnosis and admit that he fits the criteria perfectly.

Why then do I struggle to give him the same kind of grace I extend to the kids?

Hmmm, I’ll have to think this one through a bit more!

Yeah....he's a keeper!

 

Live and learn

Well as of today, it’s officially one week until the kids go back to school to start their school year.  

Ella is starting year 6 and Harley year 2.

Lucas was going to start Prep but because of the trouble we had toilet training him, we had to hold him back another year.

The good news is….he is now fully trained! (Finally)…YAY!

But he will now do another year of pre-school instead.

This past week has certainly been an eye-opener for me. I’ve discovered a lot about myself and have identified some areas that still need some work.

Like school for example.

It’s been no secret throughout this blog that last year was complete hell for Harley and also the rest of the family as a direct result.

This time last year I was excited about my little boy starting year 1 and he couldn’t wait to see his friends again.

I’d already been in and met his teacher and had a face-to-face meeting with her which I left feeling elated, confident and I was full of a healthy (I thought) anticipation.

But the wheels started to fall off in a big way, only weeks after the school year begun.

The teacher didn’t cope with Harley and he was a complete mystery to her. She was at a loss as to what to do with him he sensed this, and as a result, he quickly spiraled downwards into a sea of uncontrollable emotional outbursts , bad behaviour , mood swings and extreme anxiety.

And that’s a volatile mixture right there!

Home life suffered, I had a breakdown and life sucked enormously.

I went through a very long and damaging period of anger, desperation , blame and I suppose there was some grief thrown in for good measure as well.

(Yes, I am a HIGHLY emotional being ..I’ve been called a drama queen many-a-time!)

Even after the brown stuff hit the fan and Harley ended up being moved into the other yr 1 class away from the daily nightmare that occurred between Harley and this teacher, I still struggled enormously with moving on.

After all – I was the one that had the nightly ritual of calming and placating my terrified little boy.

At the initial meeting with Harley’s teacher at the beginning of the year, I took along with me a small handful of information that loosely related to Harley and how ASD looked on him.

I was sweet, affable, humorous and jovial to the teacher and really wanted her to like ME!

In hindsight, I can see that I was largely unprepared and didn’t give her the tools she needed for helping Harley.

(That said, I’m NOT blaming myself here, because as the year continued on, I got my act together and started to take more and more helpful information in to her and offered a LOT more in the way of advice but she wouldn’t take it on board).

But not this year.

Hell no!

You should SEE what this year’s teacher is going to be given!

I have spent hours, days, weeks and months compiling lists, ideas and hints to make this year run even more smoothly for ALL involved! I have a huge pile of printouts that I still have to decide which ones are the most useful.

I have printed up and laminated another copy of *this* for her and an extra copy for Harley to leave in his bag for any casual teachers that he may have.

I have been reading social stories that are designed for school preparation to him at night and feel like I have done as much as I possibly can to help him transition smoothly this year.

Of course I want this year’s teacher to like me (and it certainly make things easier) but my son and his needs now far outweigh my desire to be accepted.

In reflection, I’ve discovered that my longing to be accepted by the teacher last year stemmed from my own self-doubt and lack of confidence.

I was also still hurting because a lot of the other school mum’s had stopped calling me, stopped inviting me places and basically all fallen away since my misunderstood little boy had become the “naughty kid”.

I was vainly clinging to the possibility of last year’s teacher being “ The One”…

The teacher, who Harley would remember in his adult years as “The One” who believed in him.

“The One” he would tell his own kids about, “The One” who understood him and “The One” who helped him reach his full potential..

But I can now see that I put her on an unachievable pedestal and my expectations were little too high.

I argued in my head that because Harley “deserved” the best that he would automatically receive it.

Not so, Life is just not that simple.

God has recently reminded me that I often fail to come through with the goods but that He forgives me and extends me undeserved grace.

He loves me for who I am – faults and all and knows that because I am human that I will continue to miss the boat and stuff things up! But that won’t affect his forgiveness.

I still have some raw emotion rise in me when I think about the events of last year but I am no longer consumed by guilt, anger, bitterness and grief.

I have been able to get past it and chalked it all up to a learning experience.

And THIS year…I’m going in expecting GREAT things but being a little more realistic.

7 more sleeps….bring it on!

The Day After….

Well, I thought I’d start this post off with a quote from a great friend of mine who sent me a text yesterday (Christmas Day) morning saying…

” Gotta love it. Christmas plus autism equals tears, overload and broken presents. Tis the season 2 B jolly!”

I sighed with compassion for her and then laughed!!  

But not at her….but because I completely understand where she is coming from!

I sent her a text back saying that I will give her a HUGE hug when I see her on Monday and that’s she is definitely singing my song!

While we fortunately didn’t have any MAJOR meltdowns on Christmas day, there were (obviously) a few minor incidents.

There were the usual food issues at lunchtime when Harley refused to even try any of the fabulous salads that Grandma had lovingly made so he had a plate of just plain rice!

And Lucas fell asleep at the table from complete exhaustion and had to be carried up to bed where he slept for a few hours!

But here’s the thing……

I know I should be thankful that Christmas day remained relatively calm. 

And I also know that it’s a GOOD thing that I didn’t have to diffuse any major dramas, but my cynical part just knew that this was more than likely the calm before the proverbial storm….

And it was.

Today . Was . Absolute . Hell !!!

My sister and her family left to go back home this morning and pretty much as soon as we had waved them goodbye and watched their car disappear around the corner, Harley lost it.

He started to let out all of the anxiety, emotions and anger that he had been hiding and holding in for three days and let it rip in a big way….sigh….

There was a small part of me that lacked the necessary compassion to give Harley the grace that he deserved because I immediately started thinking….

“Great, once again, he did a fabulous job of appearing completely normal and relaxed to my sister and her family, and has now once again succeeded in making me appear to be a complete liar again.”

(yes…..I know that sounds selfish!) But I was mad.

This morning we decided that we would head off to Mc Donald’s to grab a coffee to start the day and let the kids have play in the playground.

Sounds great doesn’t it?

Well….yeah, IF you give your children sufficient warning, take them when they are NOT already tired, overloaded and so far out of routine it’s ridiculous!

Anyway, Harley wanted fries.

It was still only 9am, we’d already eaten breakfast and he couldn’t understand why he only got a drink when he usually gets fries as well  (this is virtually the ONLY gluten free option at McDonald’s).

So…..we had flapping, licking, screaming, crying, kicking, head-butting and a lot of whining.

And that was only the beginning!

Ugh!

It went on for at least half an hour.

I wanted to hide when I saw people staring at Harley’s mega fit and watched them cast their judgmental eyes over me as I tried to hug him tightly and calm him.

I was however, very aware that this complete meltdown of epic proportions was inevitably due to happen, because of all the changes in routine, the extra people staying in the house and the late nights and early mornings, but like I said, I knew it was coming but….Bleugh…..not nice or fun!

Then Ella spilt her hot chocolate in her lap (thankfully it wasn’t very hot) and was so highly embarrassed that her white shorts were soaking wet and brown, she burst into tears and put her head on her folded arms on the table sobbing into them and refused to look up for the rest of the time that we were there!

Mum told us that this is the start of teenage moodiness and melodramatics…..GREAT!!

Lucas let go this afternoon as well and wasn’t coping at all either.

He was cranky, teary, moody and touchy and he cried on and off all afternoon about everything and anything. He was just plain miserable.

The Christmas season has clearly really taken it’s toll on him too.

*****
I was chatting about all of this to Mum this afternoon after things had calmed down again and we were reminiscing of past years and how far Harley in particular has really come.

And you know what….she pointed out to me that none of this massive improvement in him and noticeable progress “just happened”….we had to put a helluva lot of work into him to get him this far!

All the social stories, the visual aids the routines, the forward planning, the social settings training.

The OT and speech appointments, the social therapy group and teaching him and helping him to do the sensory stimulating exercises in the hope that he will eventually learn to self-regulate.

We have also had to learn to recognise the early signs of overload or imminent meltdowns and step in and diffuse things before the situation explodes!

None of that should be taken lightly.

It was all bloody hard work!!!

I feel sad for the kids that they have had to conform so much this Christmas but also proud of them for who they are.

A few years ago…..Harley wouldn’t have been able to figure out why he wasn’t coping, and he still needs help to see the whole picture, but this afternoon he has clearly made progress when he said to me:…..

“Mum, I’m sorry that I got angry at Mc Donald’s, but I was hungry”

So I asked him if he was really hungry or if it was maybe something else that upset him.
(
He thought about it and said: ” Well, you always buy me fries AND lemonade, but today you just bought lemonade”

(which is true)..
And it was then that I realised just how important routine and rituals are to him.

Another lesson learned and as fas as I’m concerned…..another happy ending.

Happy Boxing Day all

An apology within a post

An apology within a post.

I’m sitting here at the moment in Gloria Jeans enjoying my soy latte, mooching off the free WiFi from the nearby McDonald’s and thinking a lot about yesterday’s post.

If you missed it, it was called Dear friend.

This morning, I rung my mum, my sister and my  best friend fearful that I had hurt them all by the gruff undertone that was “apparently”  evident but not intended in the post.

I know that all of them have been nothing but a wonderful ocean of support to us and I would have been devastated at the thought that my words had been taken in the wrong way.

My best friend and my sister both sent me the most beautiful card last week and I got a lovely text from mum this morning so  I know that they are all behind us 100%

I wanted them….and now all of you – my readers to know that it was never intended to be judgmental or harsh.

It was written from a place of heartache…..but in hindsight, maybe I’d better not blog when I’m feeling so prickly in future….I was thinking of my friend with the newly diagnosed child and somehow wanting to protect her from the hurdles that presented themselves to ME.

My sister told me that her first reaction was “What? I have said some of those things and I didn’t mean them like that!”  but then she was able to remind herself that she knows my heart and that is not how I intended for it to come across. She knew that I wasn’t coming from that angle.

But then I realised that other people who don’t know me in person, wouldn’t know that I am not generally so snarly..

I told her that I was sorry that I had come across the wrong way.

And so here’s the part where I say “Sorry!”.…to anyone else who may have mis-understood me….

I thought about deleting the post entirely but decided that there are still some parts of it that I absolutely want out there and I have been overwhelmed by the supportive responses I got both in comments and as emails from other mothers of ASD children so I decided to leave it BUT explain myself better.

So I must have done something right!

I think that the post it hit raw nerves because it’s such a difficult and touchy subject. I know at times I over-react because I’m sleep deprived, emotionally drained and mentally battered but I also know that even mothers of NT children often feel this way too. I’m not taking that away from you and claiming it as an “autism only ” right I promise!!

I am just so used to defending our children and our actions that I guess sometimes my words gets tangled and it ends up coming out all wrong.

If you know me in person, please don’t avoid me, I promise not to bite your head off,  I have had my slap on the wrist moment and and I appreciate the fact that we are not all walking the same roads and  I’ll make more of an effort to not pre-judge YOU all either.

Fi x

google image

Homework Hassles

Does your child ever look like this?

Harley hasn’t done his homework for the last 5 weeks.
The reason?
I can’t handle the fights and drama.

I have tried, many many times but it’s always the same thing.
Screaming, crying, head banging, growling, kicking….and that’s just from me!

I’ve had well meaning people tell me to “be the parent”….”take the control back”….”MAKE him do it”.

OK…..so how exactly do I make him do it?

Do I tie him to the chair?
Do I grab his wrist, glue on a pencil and force him to form letters on a page?
Do I threaten a child who is already completely strung out and exhausted from keeping it together for 6 hours at school and desperately wants a break?

I don’t see how that is the answer.

Recently, we have had to let his tutor go.

She was originally employed to do his weeks worth of homework with him every Wednesday.
But after 5 weeks in a row of him running and hiding under his bed screaming “NO, I DON’T LIKE HER – MAKE HER GO AWAY” every time she turned up at the door , and refusing to come out kinda made it impossible to keep her on.

And yes, I have tried to do his homework with him myself..

Oh My Goodness I’ve tried.

I went and spoke to Harley’s teacher this afternoon after school about the whole homework thing.

I love her.

She was wonderful. Especially when she heard MY side of the story.

I explained to her that yes, I can sit down with him one-on-one to help him.

But then who is going to watch my 4 year old sensory seeking son who spends the entire time I’m trying to help Harley either whinging so loudly that Harley can’t concentrate,
Or climbing all over me trying to sit on my lap.
Or jumping on my lounge.
Or scattering every toy he owns on the floor in front of me in an attempt to get my attention.
Or prodding Harely and asking him to “come play”.
Or going into Ella’s room and interuppting her whilst she is trying to do her own homework.

Not to mention the times when Ella enters the room with her grade 5 (much more difficult) homework needing help, Harley loses concentration, Lucas escalates because I’m giving my attention to Harley and Ella and it usually ends with me slamming closed the books and declaring that it’s pointless.

And this is just on the days that I can actually get him to sit down at all!!!

Unfortunately, Mr Patient is rarely home before 8pm and frequently after 9pm so it’s not an option for him to do homework with Harley, help Ella with hers or to take Lucas off my hands.

Yep, I’m virtually a single mother through the week. The kids are mostly in bed asleep when he arrives home each night.
And that’s just for the days that he’s actually in town.

I can’t tell you how many “counsellors” ,”health professionals” and friends have told me “You need to get some help Fiona”……

Yes, I have been told THAT several times.

My Doctor has told me that I need to lower my stress levels.

Everyone seems to have no problem telling me what I “need” to do but no-one can offer me anything tangible beyond that.

Yes, I know I’m being a big fat complainer here.

But homework really stinks.

Mr Patient and I have had opposite opinions of it ever since we had children.

I think that if the work can’t be taught in the 6 hours that they are in school, then there’s something wrong.

HE thinks that it’s a necessary part of extending themselves.

I tell him that he thinks like that because HE isn’t the one that has to endure the homework hassles with them.

What does everybody else think about homework??

Tony Attwood has said that children with aspergers shouldn’t even do homework.

AT ALL!

So, What do you all think?

Whose for and whose against?

The world through Harley's eyes. An Interview…

Well, since Harley has been home from school the past few days because he is unwell, I decided to take the opportunity to “get inside his head’ and find out some more of what goes on in there.

My precious little tiger Harley..

The results were both amusing and surprising!

Here is my interview with Harley:

***

“Hi Harley, can Mummy ask you some questions for my blog?”

H: ” Ok, but not too many ok, I don’t want my brain to hurt”.

Me: (stifling a giggle and putting my serious face on) “Ok, sure mate”.

“Right – question 1: “What is your favourite colour?”.………..“Black”.

2. “What about your favourite book?”………..“The Monster at the end of this book”.

3. “And your favourite T.V. show?”……………“Sonic Underground” (rolls his eyes like I’m silly for even having to ask that!)

4. “Now tell me , what is your favourite Movie?”……...”Toy Story 3″.

5. “Can you tell me what Aspergers is?”…………”No, but you and Dad say it makes me special”.

6. “Do you think that you’re different to the other kids at school?”.……….“Um, no but yes”.

Me: ( smiling thinking that this is going to be interesting!) ” OK, what do you mean by that?”

H: ” Well, no because *Tahlia in my class is an ‘ice-burger’ (sic) too and yes because everyone else is not”.

Me: “oookkaaaayy!” ( giggling)

7. “ Why don’t you like to look in people’s eyes darling”……..”Well, because it makes me scared. Some peoples eyes are too bright and some peoples eyes ask me questions and I get confused and I forget what their mouth is asking me….Also, They make my eyes all prickly”

(This particularly interested me because of my friend Laura describing making eye contact herself as an aspie in her blog as “scratchy”…)

8. “And noises…. why do some noises upset you?”……” Because they make me angry and I forget what I was thinking and then I have to go back to the start of the thought and then people get mad because I go too slow for them and then they ask me another question before I’ve even answered the first one”

(Very animated hands here and lots of raised eyebrows- this is obviously a very big issue for him)

9. “So what makes you sad?”………….”When I don’t have my teddy with me at school, and when I get into trouble for doing what  *Jacob tells me to….And sometimes the teacher makes me answer questions fast and I can’t , because I can’t think that fast and then I feel all squidgy.” ( big sigh and sad face).

I then realised that I needed to quickly take his focus of the sad things and move him onto happier questions…..

10. “It must feel good to talk about that, now, can you tell me what makes you happy?” ( putting on a huge smile and talking in a high pitched “fun” voice)………..“Yes” ( his face lights up again)….” I feel happy when you let me play the Wii or my DS…..also when you pray for me at night  and when Lucas plays what I tell him to and lets me be in charge!”

I explode into laughter!

11. “So….tell me about school”……………” Well, I love my friend *Jacob, and *Daniel and * Joshua….but sometimes we are naughty and get into trouble…I love it when we play on the computers – I’m really good at them Mum, did you know that?”

Me: “I’m sure you are mate” (smiling and ruffling his hair) “Anything else you want to tell me?”

H: “Yeah, I hate it when we have to do handwriting because my hand hurts and I can’t do it so I get all squidgy again and mad…..Sometimes the classroom is noisy and I can’t hear the teacher so I guess what I think she said so I don’t get into trouble, and then I do the wrong thing and get into trouble anyway” . (another big heavy sigh)

Me: “Well maybe you should just ask her to say it again and tell her that you didn’t hear her”.

H: (sighs again) “Then everybody will think I’m stupid”….

I make a mental note to go and talk to the teacher about this….. “It’s ok mate, I’ll help you sort this one out”.

(Relief washes over his face).

12.” Can Mummy and Daddy do anything to help make your life a little bit easier?” .……………” Just don’t yell at me, and don’t get mad at me if I ask you to say something again because I didn’t hear it”.

Me: “Sure, ok darling” ( thinking that maybe a hearing test is in order!)

13. What are your favourite things to do? …………..”Playing the Wii and Ds, Watching Sonic or Shadow on TV and watching Stealth bombers on You Tube”.

Me:(amused) “Do you like to do anything that isn’t electronic?”

H: “Ah….no, not really!”

14. “What do you want to be when you grow up?” ………”A policeman so I can have a gun (!!!!)….Or a Stealth Bomber pilot so I can drop missiles on baddies (!!!!) ”

Hmmmm….Violent much son?

15. “Where is your favourite place” ……….” Grandma’s house and Questacon”…….”And I really want to go to Disneyland one day” .

(yes son, you’re not alone there!)

16. “Do you know that I love you to the moon and back?”……….”Oh Mum!” (rolls his eyes again and giggles) “You CAN’T go to the moon –  you don’t have a rocket silly!”

Me: (smiling) “Ok then, I love you THIS much” (opening my arms as wide as they go )

H: “You forgot to say go, go gadget arms!”

 

Ah…THAT’S my boy…….Isn’t he GREAT!

 

Girl power…

As with all households that live with aspergers – it’s been a full on week in the Madhouse.

The usual meltdowns, tantrums, drama, stress and sleeplessness have, applied but this week Lucas has been quite sick.

And I mean REALLY quite sick.

We took him to the Doctors on Wednesday night and were told that he was severely dehydrated and close to needing hospitalisation and an intravenous drip.

Thankfully with God, it didn’t get that far but I did have to sit up all night syringing an electrolyte solution into his mouth in 10 ml lots every 10 minutes.

I did it for 6 hours straight and nursed him back to the little boy we know and love.

He is still recovering but SO much better.

Throughout all of  this drama- I had 3 wonderful expressions of love from my friends.

Firstly, my friend Lara wrote me the most beautiful and touching God inspired poem and kept in constant contact with me, secondly, my friend Debbie cleaned up my child’s vomit while I comforted him. (Now THAT’S true friendship in my books!) LOL

And thirdly, When we arrived home from the Doctors on Wednesday there was an enormous bunch of the most beautiful flowers on my doorstep.

My best friend Hannah had heard through my mum that it’s been a tough week and wanted to bless me.

And they are gerberas. My absolute favourite!

(Maybe she knows that because we used to live together back in the day and our flat always had gerberas everywhere hehehe)

It’s easy to get low when things aren’t exactly going to plan, but I’m choosing to only look at the good things this next week.

And my state of mind and emotions from yesterday can be summed up in three small words……..

MORE SCHOOL ISSUES!!!!!!!

And this time it’s with BOTH of the older kids.

Ugh.

But I’m NOT going to think about it right now.

I have a girls days tomorrow with some close friends and I’m going to damn well enjoy it. We get to play “ladies” for a day.

I’m even wearing makeup and *gasp* a DRESS!

Yep, that’s right, the tracky dacks, and the ugh boots have been relegated to the back of the wardrobe in anticipation of being childless and fancy free!

I might even pull out some heels!

The best part is that the whole location and details of the get together are a “secret”! Ooooooh. We’ve been instructed to wear smart casual clothes and ask no questions!

We are all meeting at Debbie’s house (my vomit mopping friend!) and she is going to take us all there in her minivan.

Woohoo……..gonna be dangerous!!!

Have a good weekend all……

 

 

Fiona gets mad…

I was thinking the other day about something that kids used to say when I was at school.

It was actually quite mean now I think about it but when you’re a kid or a teenager – you don’t think too much about the impact of your words .

They used to say to people in art class – that’s not artistic, that’s more like autistic and it was used as an insult….

Ugh, I still cringe whenever I remember that, but interestingly enough, it was never something that I can recall saying myself…. Maybe I was already being prepared for what lay ahead?

It was used in the same context that kids nowadays say “retarded” or “sick”.

It was also quite common to make fun of the slow kids.

I don’t believe that my school was much different from any other schools in that respect and childhood teasing and taunting seems to part of growing up.

But what is too much….

What oversteps the boundaries of harmless fun and into the area of bullying?

When do you need to step in as a parent and what should you just leave to settle on its own?

Of course the answer to that varies between different children and circumstances but for me, anytime that one of my children is so hurt by comments that it starts to impede their home life means it is going too far.

I have mentioned before that we believe that our daughter Ella is somewhere on the spectrum and we know that she is very different to other girls her own age.

We did start to explore the diagnostic route and some professionals believe that she does in fact meet the criteria for a diagnosis. – However, we stopped going down that road on her request and we will revisit it in the future again if  the need arises.

It’s true that she may just have a lot of autistic traits but not enough to fully diagnose her, and we give her more grace than you would an NT child because we know what we see in her.

And she is a flightier –  she shuts down in times of crisis and avoids confrontation at all cost.

So she is the polar opposite of Harley!

Today at school the children were allowed to wear mufti clothes (casual) clothes if they brought a gold coin donation as a fund-raising event and my concerns were raised when Ella and I had the following conversation;

Me: “Why don’t you wear those lovely denim short-alls that we just bought you up at Grandma’s”

Ella : “ No way, they’ll make me look too fat”

Me : (incredulous as she is TINY ) “WHAT! –  You… Fat- you’ve GOT to be kidding”!!!???

Ella : (with tears welled in the corners of her eyes threatening to escape any second) ” I’m NOT wearing it Mum, I need to look thinner”

Me : “But you’ve only had them TWO WEEKS and they look fantastic on – you wore them a lot up at Grandma’s?”

Ella: “Yes, but I don’t know anyone up there who will tease me”

Me: (starting to see red) “Who is teasing you, what did they say. Did they actually call you fat?”

Ella: (tears flowing now) - “There was a book in the library about weight loss and she said that I need that because I need to lose weight”

Me: “Who is SHE? And what the hell is going on?”

Ella: (sobbing now) “* Kirsten said it, please don’t be angry with me Mummy”

Me: “Oh baby girl (putting my arm around her shoulders) – no-one is angry with you, I’m furious with *Kirsten though”.

Ella: (looking somewhat relieved) “Oh…that’s good. She said it in front of *Megan and they both laughed and whispered behind their hands”.

Me: (grabbing the phone to ring and abuse their mothers and have it out once and for all) “Baby, they are not worth it, they are just being mean girls. Stick with *Emma and *Tina, they are your true friends”

Me : “So, now, what would you like to wear instead”

Ella: “Something tight and fitting so it’s not baggy to look like fat”

****

Ladies and gentlemen…..SHE IS ONLY TEN!!!!!!!

***

And my concerns were doubled when I realised that she had refused dinner last night……and then this morning it broke my heart to watch her pick half-heartedly at her cereal and move it around the bowl with her spoon not eating it.

It’s documented that up to 23% of all girls with anorexia nervosa are later found to be exhibiting the signs of aspergers or some autism spectrum disorder .

You can read more about it here.

And even more troubling - this, article REALLY made me sit up and pay attention.

I know that this is still very early days with Ella but I’m not about to sit back and watch her get ensnared by something this awful and possibly preventable.

I’m praying ferverently about this. It is NOT going to happen in this house.

These girls at school have persistently bullied Ella for almost 7 years straight now. And this Mumma bear has had it.

So……tell me…….do you think this child is fat???!!

 

 

Dissecting the day

Well, we eventually made it safely to my mum’s but not without a serious of unfortunate events. (Of course- not much goes smoothly for the Madhouse tribe!)

Google Image

We got a reasonable distance out-of-town and I realised that I had left some things back in the unit so we had to turn the car around and go back.

The reason that we forgot things was due partly to the fact that Harley went in and out of screaming/kicking/crying fits from about 7am onwards. We finally left at 11am so by then we were already emotionally spent and our minds weren’t exactly on the car packing!

It continued to pour down with rain and any last possibility of maybe making it to the beach for a quick stroll before we headed off was quickly squashed.

Because we had lost almost a whole hour because we had to go back – we decided to grab some lunch in town instead of on the road as originally planned.

But someone forgot to warn Harley didn’t t they!

I don’t think that there was a single soul in the Shopping Centre that didn’t see Harley thrashing, punching and moaning as the rest of us tried to eat our lunch inconspicuously.

The highlight was when he got so angry that he ran straight out the doors of the food court and into the car park before running out in front of a car!!!!

And no, we didn’t receive any compassionate or understanding looks from fellow diners.

No.

We got the “bad parent” glares, the tsk tsking crowd, the parents at nearby tables shielding their own children in case they catch his bad behaviour bug and we were the centre of attention for all the rest of the shoppers who used us as their lunchtime entertainment.

By the third time that he ran away from the table after we’d chased him and wrangled him back to his seat – we let him go as we knew that he was just trying to grab attention.

After all – nothing we were doing was working anyway.

Once we finally dragged him (and yes – that’s literally DRAGGED him) back to car, we managed to finally get to the bottom of what the problem was.

Mind you – it took almost half an hour.

The problem was that he didn’t understand why he couldn’t have gone swimming in the pool at the apartments reasoning that even though it was raining it didn’t matter as he was already wet.

We tried to explain that the water wasn’t heated and that it would have been freezing cold. That and the fact that it never really occurred to us and he never ever even asked us!

We pulled out the iPhone and researched the weather reports over at  my mum’s and told him that I would take him swimming one day this week instead.

Problem solved.

He was happy, he stopped crying, stopped moaning, stopped head butting me and calmly climbed into the car and we drove for the next 4 hours without incident.

I . Don’t . Get .It . ??????

Surely ALL this can’t have been over one small misunderstanding can it?

I think it was a combination of having to go back to get the things we forgot therefore making the arrival time at Grandma’s much later mixed with the lunch at a different place and the disappointment of not being able to go swimming all tossed together to cause one big knock on domino effect.

After we arrived, he put on a good show for Mum. She is one of the very few people that he is comfortable enough with to lose it in front  of.

And lose it he did.

Bedtime was HELL. He wasn’t a happy camper and let Mum know by growling at her, moaning and punching his bed and his little brother *sigh*

Here’s hoping that he wakes up in a better frame of mind tomorrow.

I’m trying.

Really I am.

I’m doing my absolute best to make it all easier for him.

I WANT to understand. I really wish I could “get ” him more often but lately, I seem to be sucking majorly at parenting him.

Or maybe he’s just moved it all up a notch.

I need to meet him there instead.

Visual Pfft…..

 

I have been patting myself on the back for my forward thinking in making visual charts on the fridge for the boys so they know what’s going on every day of the holidays.

However…….with my little Harley being as literal as his is, there were problems. (Of course – what did I expect)?

The card for “breakfast” looked like this:

*

Because it is the gluten-free cereal that he has been eating every day for the past 6 months.

EVERY DAY!

So I was NOT prepared for the tears and “disaster” reaction when he saw it.

It took me TEN MINUTES to figure out that the problem was that he wanted toast but thought that he wasn’t allowed because the picture quite plainly show Cocoa Bombs.

I gave him toast. Problem averted.

Briefly.

I have printed up this for future charts :

*

Another card showed this:

*

Which I think is a good illustration for “shopping”.

So I pile the kids in the car and off to the shops we go.

Because Harley had already got my frustration levels raised, I decided that I needed a coffee before I even attempted to shop.

So I explained to him that I would grab a take away coffee.

He asked me what he could have to eat and I replied with a non-committal “I’ll see what they have that’s gluten-free”.

No, that wasn’t enough information.

Of course not. I should know the drill by now.

I knew that the coffee shop sold G/F Rocky Road and even though it wasn’t something I would normally choose to feed

my children at 10 o’clock in the morning, I told him that he could have some rocky road.

He said he didn’t know what that was. (I doubted that) so I explained that it was chocolate with marshmallows in it.

“Oh, now I know, yum Mum”.

Great, that was settled, I would get my coffee after all.

We arrive at the coffee shop and I pick up a “HUGE” Rocky Road bar with the intention of sharing it up amongst the kids.

Harley throws another fit.

This time he is rolling around the floor at the feet of other customers also in line screaming like someone had put a bullet through his chest.

The lovely customers and shop staff stared at me.

Because that’s exactly what I needed,

Judgement.

I picked him up and walked over to a quiet corner of the centre to try to get to the bottom of whatever was going on in his little head.

It turned out that he had mistaken my description of “chocolate and marshmallow”

for the fondue shop that Mr. Patient took him to last weekend. (In a completely different centre).

AHHHHHHHH!

I calmed him eventually, (half and hour had passed by now) and sheepishly we go back to the coffee shop

and I order my coffee and pick the Rocky Road up again to pay for it and fit number 2 starts.

He wanted one all to himself. He didn’t want to share.

So I gave in and bought 3 of the damn things at $4 each. What a rip-off.

So my cup of coffee ended up costing me $16. Grrrrrrr.

I cut my losses and enjoyed my coffee on the go.

……..

Back at home, the card on the fridge next to the shopping trolley (cart) was:

*

This is the supermarket that I shop at.

So of course Harley thought that it was the ONLY shop we were going to.

(Stupid STUPID girl Fiona!!!)

The fact that I wanted to go to 3 other stores as well went down like a lead balloon but I figured that the morning was already a complete write off, and half the shopping centre had already made their minds up about what type of parent I was anyway,

So I did it..

I dragged a kicking and screaming child along and finished my shopping.

And what fun we had.

(I’m sorry for all the sarcasm, it is pretty heavy today I’m afraid).

I should have gone with something like this:

*

OR

 

 

*

This instead:

Long story short,

3 more “episodes” later, one bruised and battered Mummy ego

and three emotionally spent Madhouse Members and I headed home to unpack the groceries.

….

Harley (magically happier again) goes straight to the fridge chart to see what’s next.

(Because HE’S fine now. Never mind that Mum is a gibbering wreck.)

The next activity is to go to the park for a play and a scooter ride.

Perfect.

Let’s get some energy out of them, burn up some time and give them a release.

So we pile the scooters in the back of the car, and head off towards the park.

This is the photo I used on the fridge……

Se if you can pick the problem…..

.

.

We pull up at the park and start to get out of the car when Harley starts up AGAIN!

Ella rolls her eyes and says “what now” and I stifle a giggle!

The photo on the fridge was taken at a different park.

The scooter he is riding on in this picture is his OLD scooter.

I  *  GIVE  *  UP!!!!

I should have gone with something like this instead :

*

I open all the windows in the car, tell Harley that he’s welcome to join is when he settles down and get the scooters out of the boot.

I walk with Ella and Lucas over to the playground blocking out Harley’s annoying, whiney, angry screams.

I yell back at him to stop being such a pain in the ____ and keep walking.

Magically after only a few minutes, he appears calmer and more together after a few minutes and peace is restored for another day.

Now……here is what “ I “got out of today.

Don’t bother with visual charts unless you use non-specific events and cartoon pictures NOT photos of the child themselves.

Don’t ever leave the house with an aspergers child and expect to have a “normal” day.

EVER.

Don’t think that just because you have crossed EVERY t and dotted EVERY i

that you have covered ALL your bases and lastly……

LEARN THE DIFFERENCE BETWEEN MELTDOWNS AND TEMPER TANTRUMS FROM A CHILD WHO ALWAYS WANTS THEIR OWN WAY!

Because I’m stuffed if I can tell the difference.

.

.

.

All * images from google…

 

Diving into murky waters….

OK……so maybe I really DO have a post in me after all!

Surprised? No, me either….. But just a warning…

This post may be hard for an adult with aspergers to read. It outlines my frustrations towards my child prior to diagnosis and I would hate any of you to feel that you were a burden to your own parents. That is not what I’m highlighting here. So if you decide to read on, please read this in the context that it is intended.

This post is mainly to show how far both Harley and MYSELF have come in just 2 short years.

Only read on if you can handle some very intense revelations….

********

It was the last day of term 3 for the kids today. WOOHOO!!!  But it’s still amazing to me that I even feel this excited.

Get ready……..I’m going to totally rat myself out here.

OoooooH! I hear you say!

I’m going to reveal another side of me that most of my blogging friends have never seen. And it ain’t pretty!

*Way back before Harley’s diagnosis ( * it’s a place I rarely allow myself to visit), when he was still in pre-school, I used to absolutely DREAD the school holidays. I used to arrive at school at the very last possible minute trying desperately to make the very most of my own time.

I’m going to reveal another secret here. Shhhhhh!

We actually had a name for it…..

Yep, we had things in our household that were known as HFDs.

That stood for “Harley free days“. And I craved them. They were like a drug. These were the days that I used to replenish my patience, understanding, compassion and love levels so that I could give him what he needed because he completely sucked me dry on the days that he was here….

Uh-huh. I told you it wasn’t nice.

It gets worse……

We love acronyms here.

We also had PPSH (poo-poo-schmuck head ) – unfortunately Harley was regularly referred to as this….

EWK nights, (eat without the kids – aka date night)

NAHDDs (pronounced Nards – meaning : needed a heavy drink days)

P-MITED (pronounced pee-mighted : meaning poke myself in the eye day) – in a sentence : “I had a pee-mighty day today ”

Y THIT (pronounced why-thit: meaning : You take him, I’m tired).

And it extended into food as well.

We often cooked “TM with MI” This stood for “Tuna macaroni with magic ingredients”

The “magic” ingredients were peeled and grated yellow squash and zucchini (courgette) that we disguised in the white sauce and the kids never worked out that they were eating vegetables!

BRILLIANT!

And the best thing is that to this day, none of them have figured out what it stands for so we can still cook it!!

Mr Patient and I learned to talk in this code because as worn out, frustrated and annoyed as I got with the kids – I didn’t want to come out and say it outright in front of them. I strongly believe that words have power.

Sometimes, I would only have to look at Mr Patient as he walked in the door and say “Y-Thit” and he would know what to do.

But……then after Harley got diagnosed with aspergers syndrome, I had to take a big step backwards and take a long hard look at myself and rethink, redesign, and rework my whole attitude to parenting, discipline and communication.

And I thanked God everyday for this revelation that it wasn’t our parenting that had gone awry but that it was something much bigger than us that we were dealing with.

After diagnosis, my levels of compassion rose to levels that I could never have imagined possessing before this. My patience level also climbed as did my understanding.

Unfortunately, so did my guilt, and anger. But I was angry at myself.

I felt absolutely rotten for all the times that I had screamed at Harley through tears of complete bewilderment and hopelessness.

I couldn’t stop playing the same movies in my head……the ones about spending hours putting him in time out for refusing to eat his meal because I didn’t know about food/taste/texture sensitivities.

The ones where I was screaming at him like a fish monger’s wife for not coming when I called him – I was still unaware that a child could shut down when they became overloaded in their senses.

I felt like I had left the video of me talking constantly AT HIM in a frustrated, angry and unforgiving tone on repeat and it tortured me over and over day and night.

I did have a sense as a mother that I was dealing with something bigger than just a naughty child. I KNEW that I was doing absolutely everything that I could think of or read about to try and make ground with him.

And for a while there, – I assumed that this was just a “boy thing” that I could punish out of him because Ella had been a dream baby and toddler.

So getting his diagnosis and then starting to find our place on the huge learning curve that is the autistic spectrum – I started to view him in a new light.

I’m ashamed to say that I felt like I had fallen in love with him all over again. I was seeing this child through new and completely different eyes.

My vision was no longer clouded.

I no longer craved days without him.

I didn’t require as many breaks from him anymore.

Because as I started applying techniques that I was gradually being taught by professionals to help him to function in this crazy NT dominated world, he started changing too.

He has progressed SO much that now I look forward to the holidays for many reasons.

Firstly, because I LOVE having my children around.

Secondly because I KNOW that he needs these holidays to re-group and give his brain a rest from the constant stress of daily school life.

And thirdly because I don’t want to miss a SINGLE moment of my children’s growing years.

Because before I know it……..they will be all grown up .