He was diagnosed by the same paediatrician who diagnosed Harley, and as I have written before, it was virtually an on-the-spot diagnosis. So we as a family took this diagnosis on board and have been catering to this ever since.
He started attending speech therapy, OT and an early intervention group soon after.
Whilst the diagnosis was already given, we still needed to have a CATS assessment.
We entered the room to be met by a multi-disciplinary team containing, the diagnostic paediatrician, an OT, a speech therapist, a physiotherapist and a social worker.
It was a little overwhelming to walk straight into this but we knew it was the final step in discovering exactly how to best help Lucas when he starts school next year.
I know that this sounds terrible but I was actually somewhat annoyed that when Lucas woke up in the morning, he was in a fantastic agreeable mood and his speech was really quite clear because, only the day before, his speech therapist took a video of him and asked me if it was OK if she showed it to some of her colleagues because he is proving to be a mystery to her.
She told me that the inconsistency of his speech bothers her because one week she will understand 90% of his attempts at speech but then only 10% the following week.
So as bad as it sounds – I was concerned that this testing wouldn’t show the “real” Lucas and that it might provide false results.
We spent an hour sitting in that sterile room with all five members of the team answering questions, providing valuable insight and watching Lucas sit W-legged on the floor playing with the trains and dinosaurs completely oblivious to the discussions going on around him.
One of the things that they were particularly interested in was that we already have an older child diagnosed with aspergers. And Mr Patient and I felt ashamed as we admitted that our biggest struggle was not with Lucas – (the child they were assessing)- but with Harley.
The social worker asked us what kind of family support we have, and noticeably were concerned when they heard our answers.
My numerous surgeries and mental health were brought into question and the empathy for our situation in that room was almost tangible!
They were an incredibly supportive and wonderful team.
Next, we were asked to leave Lucas in the room with the Paediatrician and one of the therapists whilst the other 3 accompanied Mr Patient and I to an adjoining room with one-way glass and a TV screen that we could observe the rest of the assessment on.
We giggled as we watched him show the Dr how to tell if you’re alive or dead and squeezed her fingers for her until they turned white and then after releasing the pressure and when he finger returned to it’s normal pink colour – he exclaimed “Yay! You’re alive Dr Jenny”!
She thought it was hilarious too!
We watched this play based assessment with mixed emotions….pride, anticipation and for Mr Patient, a little sadness.
He shed a few tears as the reality set in and he was confronted with the very real possibility that the original Paediatrician was correct.
I need to point out here that I personally am in a very different place to him. I believed this diagnosis right from the start but he has lived in “hope” that his other son would be spared the trials that seem to go hand-in-hand with ASDs.
After the assessment was completed, we were sent off to the hospital cafeteria for half an hour so that the team could meet and compile their results and final diagnosis.
We sat out in the sunny courtyard watching Lucas play happily in the garden and discussed what we expected the outcome to be. I told Mr Patient that I really couldn’t pick it. I honestly had NO idea what they were going to tell us. It was a brilliant day for Lucas….he might have been able to pass for typical because he is so high functioning.
I’ve written many times before that there are days when even I as his mother (and the one that he spends the MOST time with) have doubted the original diagnosis.
These are the days when he is attentive, agreeable, consistent and “typical”. But then soon after he has what I call a “fully autistic day”… These days have him pacing in circles, mumbling to himself and repeating the same phrases over and over to himself like a mantra.
But my concerns were laid to rest as the team re-entered the room and the results were delivered.
Lucas meets the criteria for aspergers syndrome 100%.
We were told that the formal reporting will take a little while to complete but that in the meantime, they can tell us with certainty that the original diagnosis was and is correct.
I beamed when they told me that he has no intellectual delay but conversely he is placed in the 80th percentile intelligence wise for his age group..
She then went onto explain that the problem lies in his apparent speech delay. The ability is more than there but it’s just not translating to his words. She recommended more intense speech therapy and stressed to us the importance of finding just the right school for him next year.
The Dr must have read my face because she then launched into an in-depth discussion of how differently aspergers can appear in two different children. (Namely my two boys).
Harley is aggressive, emotional, short-tempered and obsessive. But he is also cuddly, affectionate, sensitive and caring.
Lucas is easy-going, level-headed, patient and flexible. But he shuns affection, appears nonchalant and exudes indifference.
She explained to me that personality and sensory profile are major factors in how aspergers looks on the individual and that the family dynamic can also dramatically affect the child’s presentation of aspergers.
For example: Lucas was diagnosed a lot earlier than Harley was so we made the necessary adjustments therefore sparing him the heartache of trying to fit into a family that isn’t catering to your needs.
There were already visuals all around the home left over from Harley and we never expected the same level of compliance that we did of Harley at the same age.
She pointed out that because the boys share the same diagnosis….there are a plethora of variants that affect the way that they present.
The meeting was finished after the social worker asked us what kind of service we as a family needed.
We looked at the floor as we announced again that we needed more help with Harley than with Lucas.
Our information has now been put forward to a number of support providers who deal specifically with behaviour management and supporting the family unit as a whole. I’m thrilled and incredibly grateful.
Throughout this whole exhausting process, I have learned that I need to stop listening to other people because I know my son better than any health professional ever could.
So mothers…..trust your instincts.
It there’s something about your child that’s just not quite right but you can’t put your finger on it…..get it checked.
Follow your heart, the worst that could happen is that your child turns out to be typical albeit a little quirky.
Or…..Congratulations! You have a remarkable child with an incredible gift who just happens to be on the spectrum.
It’s a win-win as far as I’m concerned.
I had a real Ah-ha moment at Lucas’ early intervention program this morning.
In the parents group, we watched a Powerpoint presentation on the Sensory system.
Now – I’ve learnt a fair bit about this because Harley has been diagnosed for almost 3 years now but I’ve had to “relearn” a lot of things due to the fact that he is the polar opposite to Lucas in the way his sensory system functions.
We were shown that there are basically four categories and most of us fall into mainly one of them although it is common to have a mixture.
The first two categories are “Over” sensory groups.
The Sensory Avoider (Or the “Controller”)
These people avoid situations where there is too much noise/light/activity/strong smells and action.
They crave routine and structure and can be un-cooperative and inflexible.
They like to “control” their environments either by running away, withdrawing or completely avoiding.
I would say that my Ella is an avoider. She is not always vocal about discomfort but she definitely retreats when she’s overwhelmed.
Then there’s the Sensory Sensitive (The “Complainer”)
These people notice small details and are often bothered by subtle changes, background noises, common noises such as a toilet flushing and have difficulty participating in group activities.
They are often over-reactive and more dramatic than others and are extremely bothered by the “rules” being broken.
My Harley definitely fits into the category of Sensory Sensitive because EVERYTHING seems to set him off on a meltdown!
Mr Patient also displays a lot of Sensory Sensitive behaviour too.
Next is the two “Under” sensory groups.
The Sensory Seeker (The “Pleasure seeker”)
These people crave movement, love bright and/or flickering lights, constant activity and are very impulsive.
They prefer rough and tumble games, are generally more curious and cannot stick at any activity for very long without becoming bored.
OMGOSH! That is SO me and also Lucas.
And lastly the Poor Registrator (“Easy going”)
These people are unaware of stimulants and are often almost lethargic in their movements.
They often have difficulty getting out-of-the-way because they are too slow.
They under register sensory wise and appear to show little emotion and can seem un-motivated.
Over the past 3 years, I have learnt all I could cram in about Harley’s sensory needs. And I have gotten him to a place where I can recognise the signs of when he’s becoming too stimulated or overly hyped and know (most of the time) how to avoid this happening. Or if it does….how to bring him down again effectively.
Basically – without actually realising it, I was doing the exact opposite of what I would want for myself and I’ve been pretty spot on so far!
I figured out a while ago that Lucas and I were very similar sensory wise because I completely understand his desire to be constantly moving.
But this morning as I sat in this parent group that I go to every week, I had a huge light bulb moment.
We went around the circle and had to say what category we thought “we” were in and all but ME were either Sensory Avoiders (Controllers) or Sensory Sensitive (Complainers) so they all fell into the “Over” category.
I was THE ONLY ONE who is in the “Under” category. I am the only one who secretly goes freakin’ NUTS every week having to sit there for two whole hours and “appear” to be coping!
I chew gum for the whole session, frequently fiddle with my iPhone, “pretend” to be taking notes so I can doodle on paper and jiggle my legs!
I usually have to either exercise or go for a walk when I get home because I’m climbing the walls by the end.
My whole life I have struggled to sit still, stop moving, stop fidgeting and pay attention! I had teachers threaten to put me “on the roof”…( you know…Fiddler on the roof?)
Even now….anything over ten minutes long almost drives me SPARE!
And this goes for sermons at church, meetings at work, parent/teacher interviews, social gathering and meal times.
Mr Patient often frowns at me if we’re out at a restaurant because it literally makes my whole body itch if I have to sit still for too long. Car trips make me crazy, and the only jobs I actually did well at were the ones where I was allowed to move a lot during the day.
I loved waitressing, merchandising and mystery shopping but the receptionist and office jobs that I’ve had just about kill me.
NOW I KNOW WHY!!!!!
I’ve always said that Lucas and Harley present so incredibly differently with their ASDs and I can now see that although Lucas “appears” to be socially adept and “involved”….He is really just seeking the interaction, movement and sensory input that his sensory system is telling him that he needs!
He has his CATS assessment tomorrow morning. We will then know once and for all what exactly it is that we are dealing with and be able to approach it in the best possible way.
So….What category do YOU fall into?
- Ask your child to draw a picture of you. It doesn’t matter how old they are…
- Post the picture on your blog.
- Call it the ‘This is Me Meme’.
- Pop over to here and add to the linky.
- Then tag some others
Ok…..Firstly Here’s my 4 year old son Lucas’ drawing:
Then my 7 year old son Harley drew this:
He tells me that this is me holding his hand and that they are not
fingers on the right of the picture but they are his hands flapping
because he’s happy to be with me…awwwww!
And this is my 11 year old daughter Ella’s drawing:
Complete with a few very flattering adjectives and my two favourite past times
(according to her) Piano playing and blogging!
Now it’s my turn to tag some people. If you don’t want to take part that’s AOK with me but it IS a lot of fun
Ok, I’m tagging:
The Marvellous Merri @ Treasures in the dust
The Dancing Queen DQ @ I should have called him Calvin
The Sensational Steph @ Steph’s diary
The Lovely Lizbeth @ Four sea stars.
I’m absolutely gushing with pride here! There is one happy Mama in this here house!
Not only did Harley do GREAT at the party tonight, he amazed me beyond anything that I could have imagined!
I arrived early and after clearing it first with the host Mum, I walked him around the house showing him where things were and acclimatised him with the environment.
One of the first things that I noticed though, was the food table full of fairy bread, chips, lollies and cupcakes……EEEEeeeeekkK!
I chided myself for forgetting all about bringing gluten-free food for him. It was really strange that I’d forgotten it too because I’d covered every other possible scenario with him!
I’d told him that there would be lots of kids, loud music and flashing lights. I prepared him for the possibility of his head getting (what he calls crowded) and his excitement wasn’t even slightly dulled even after I’d given him the worst-case scenario!
After about ten minutes, I told him that I had to leave for a little while and I handed the mother his headphones and my mobile number then left to go and buy some dinner for myself and Ella and Lucas. (Mr Patient is still at work so they had to come too).
When we returned Harley came running up to me and told me that he was having the BEST time.
I asked him what he’d eaten (so I could prepare myself for the onslaught tomorrow!) and he answered: “ I only ate the gummy bears, the sour worms and the cheezels because I know that these are the only gluten-free things here!”
I was THRILLED!, He has learnt what he can and can’t eat! WOOHOOOOOOO!
(There is a little gluten in the cheezels but he wouldn’t have known that because the ones I buy are gluten-free J )
*Sienna’s Mum told me that she offered him a sausage sandwich for dinner and he told her that he only wanted the sausage because he can’t eat bread!
My mouth fell open in disbelief!!!
And the final kicker….there was a choice of birthday cake or ice-cream cake and Harley chose the ice-cream cake because HE KNEW that there was gluten in regular cake!!!!
I can’t tell you how excited this makes me! All the hard work I have put into him trying to convince him that it is for his own good that he eats gluten-free…..HAS WORKED!!!!
I think back to the horrendous fights I used to have with him when I first started him on this diet….the crying, the whining, the negotiating…UGH…..it was AWFUL! But he has now learnt what makes him feel good and what doesn’t!
And the BEST part of the night?……*Sienna’s mother told me that he was one of the only children who used their pleases and thankyous and excuse mes…….
Yep…I’m grinning from ear to ear
Harley has been invited to a birthday party for one of the gorgeous little girls in his class. (And she really is gorgeous….and so is her mum).
So…that’s awesome right?
Well…yeah it is, I’m pleased that my son has been included, and the family is absolutely lovely, but there’s a really good reason for my concern.
This is a 70’s disco party…you know, the ones with the disco ball, the flashing lights, the loud pumping music and the tonne of kids dancing and grooving to the beat.
Are all the sirens going off in anyone else’s head as well?
Harley is very excited. Well as excited as he can be without fully knowing what to expect.
He loves *Sienna and really really wants to go. He helped me pick her present, he chose her favourite colour and he keep telling me over and over again that he just knows that she is going to LOVE it!
I’ve yet to explain to him that this party may very easily send him into a full blown sensory meltdown. I’ve packed some ear plugs, and his iPod, he is wearing a fiddle toy around his neck as a 70’s inspired medallion so the only thing left for me to do is sit him down and explain just.what.to.expect.
But I so don’t wanna!
All I really want to do is wrap him up and snuggle on the sofa with him watching movies so I can protect him from what lies out there .
Ugh…..it’s times like this that I hate autism and SPD.
I’ve been really challenged in myself lately to start looking at things differently. And by that I mean…in a more positive light.
I admit that I am often far too quick to get caught up in feeling sorry for myself and my situation, without stopping to take stock of all the little things that I should really be thankful for.
Let’s face it…..it’s so easy to succumb to the overwhelming emotions that come from having a child on the spectrum.
I’ve sure found a lot that has frustrated me this week- I’ve frankly had enough of being a taxi service-I’m tired of running from this therapy to that therapy and from this appointment to that appointment.
I have found myself wishing (on more than one occasion) that I didn’t have to keep pushing a flippin’ elephant up a hill every-freaking-day when it comes to what should be simple tasks.
It annoys me that eating breakfast without tears at some point is a rarity.
That brushing teeth can be a marathon event and getting dressed requires much persistence and drama and usually ends in either a child or me sobbing and moaning!!
It really shouldn’t be this hard.
But I was given the much-needed slap up the side of the head yesterday as I watched a documentary on TV entitled “Leaving home at 8”.
* Now….I want to write from the get-go that I am not going to project my own thoughts or opinions on this but only to use it as a launching pad to describe my own thought patterns and feelings during and after watching this. I completely understand that there are a lot of really good outcomes for boarders and that it is not always a negative experience. My own best friend did it and flourished.
OK…..The show was about families who have decided (for various reasons) to send their children to boarding school at only 8 years old. Cameras followed four girls from three different families (one set of twins) for a 12 month period who were all sharing a room together in this dorm house. The show chronicled all the ups and downs of settling in and adjusting to their new surroundings.
Three of the four girls simply didn’t cope at all for a very long time. They were shown sobbing into their pillows and each other’s arms every night and the rapid decline in their emotional health was frightening to watch. The long drawn out counselling sessions with their dorm mother on a regular basis showed how attached these girls were becoming to her and to each other.
It shows that human nature really sometimes is to “love the one you’re with”.
The girls were interviewed frequently and it was interesting to me to notice that gradually as the weeks wore on, the girls seemed to harden up a lot, and be less receptive to their parents on visiting days and their phone calls and had seemed to grow up almost overnight. Their naivety and innocence seemed to be long gone as they matured prematurely due to being forced into a situation where they had to learn to be self-sufficient at a very young age.
The parents were also interviewed separately and the common theme amongst them was sadness that they no longer got to be a part of the small things that I have found myself complaining a lot about recently.
Things like: homework, mealtimes, bath times, snuggling on the sofa watching television together, etc etc,
One mother said through a wall of tears that the hour and a half round trip that she used to make to her daughter’s riding lesson twice a week used to be something that she resented and hated doing but now she would give anything to just have that extra hour and a half with her back again.
So it got me thinking.
I realised that the old cliché of how time flies and how we should treasure these younger years because our children will be all grown up before you know it….really are very very true.
It wasn’t long ago that bath times for the 3 of them would be a whole complete hour out of my life each evening. But now…..Ella and Harley are able to shower themselves and Lucas only needs a little help to soap himself up.
Bath time is slowly becoming obsolete around here! What used to take a horrendous 60 minutes is now over in less than 5.
And meal times….no longer do I have to sit and spoon feed Lucas whilst reminding and prompting Harley to eat every.five.seconds!
I’ve learnt what foods my kids will actually eat and although the food likes are very limited…I can avoid MOST dramas by continuing to serve up these bland and tasteless meals to make dinnertime go more smoothly! It’s all about picking your battles!
It really is just a case of doing whatever works for YOUR family and to heck with all the “rules” that other people are so intent on inflicting on us parents who choose to do it a little differently.
And Lucas is finally able to dress himself. This has made the morning routine SO MUCH faster….up until very recently, I would have to spend what seemed like an eternity chasing Lucas to pin him down long enough to get dressed, meanwhile Harley has gotten distracted and started playing with a toy half naked lying on his floor and I would then have to start nagging and chasing HIM!
I lost count of the number of times that I would have to take Lucas to school in his pyjamas and dress him in the school car park just so we could get there on time.
These things are only small improvements but when they are all working in conjunction with each other…the effect on the family dynamic is HUGE!
I was able to compare where we are today here in 2011 with how we functioned this time last year by reading back over some of my very first ever blog posts written in April last year. I can see how far we have come by joining all over those little baby steps together and realised that we have actually managed to complete a couple of kilometres step by step by step.
I am making a conscious effort to focus less on the here and now annoying time-wasting jobs but more so on recognising that every little hurdle and drama will one day be a distant memory of those never-to-be-had-again, baby years.
I am not really (nor have ever been) a “big picture” kinda person, but after watching those parents on the screen in front of me realise how much they missed of their daughter’s everyday lives….I became determined to recognise that this too will pass and before I know it….the things that are frustrating me now will be distant memories and the newer challenges that I will be facing will be a constant reminder of just how far they have come.
It’s so so so very true……
Before you know it….the baby years are gone and if you are like me and allow yourself to get too caught up in the sheer horribleness of today, you might miss the transition of your child from challenging to champion!
** Now….could you all please remind me of this post the next time I write something whiney about how much my life sucks?
As I’ve written about before….One of the areas that Harley REALLY struggles with is handwriting….
It is a common problem for children on the autistic spectrum and Harley’s fine motor skills are also greatly lacking.
* This is a page from one of his most recent homework efforts:
That took him almost 2 hours every night because of the mammoth effort I had to put in just getting him to even SIT at the table!
And as for getting him to follow the instructions and write in coloured gel pen, texta or coloured pencil on Wednesdays…..FORGET ABOUT IT!
I have enough trouble already. I absolutely hate afternoons because it’s never fun fighting and fighting and fighting with your child to do something that I personally couldn’t care less whether he does it or not *sigh*.
We have the tears, the head banging on the table, the sobbing out loud, the “I cant’s” and ultimately…..a meltdown.
EVERY FREAKIN’ DAY!
So I eventually reached my limit, I cracked and decided that I had to come up with a plan because this simply couldn’t go on another minute.
I went and saw his teacher and told her that Harley has to do writing at his OT once a week and also at Social Group and I stressed that he was definitely getting enough practise and help with his handwriting. (Even though to look at it, it is hard to believe).
I got her to clarify that it was mainly the reading and spelling that they were supposed to be working on with their lists and she confirmed that yes it was.
I then asked her if it would be ok if I could try out a little something that I came up with instead as long as he learnt his words and could read and spell them.
She agreed wholeheartedly and this is the result…..
I simply attach the photographs of him making his words to his homework book and he hands that in along with his maths sheets and home reading record book.
I gotta tell you…it’s a win-win here!
It’s so wonderful when you find teachers that actually care enough to work with you and your child!
And the Madhouse has returned to (our version) of peace!
**Our version still contains random yelling, jumping, running, punching and fighting, but a lot less tears and hysteria!!
This weekend, I’m really not sure what happened to us as parents!
We stuffed up big time and seemed to forget everything that we’ve ever been taught about raising children on the spectrum.
I’ve written about it below so that anyone reading this can learn from our mistakes and avoid doing EVERYTHING that we did! (Unless achieving a meltdown is your ultimate goal….then please….follow our step by step instructions of guaranteed ways to bring on a meltdown):
1. Make an impulsive decision to go out.
On Saturday morning, we decided that the house could do with a really good sorting through and a major clean out so we set to work.
We went through all of the kid’s toys and books and bundled things up into piles of “good-enough-to-sell on eBay” and “charity”. We cleaned, polished and vacuumed every surface in the house and gave our poor washing machine the biggest workout I think it’s ever had!
We accomplished quite a lot and stood back to admire our achievements before noticing that it was already 1pm and realised that none of us had eaten.
Because neither Mr Patient or I could have been bothered to make anything, he decided to all go to our local shopping centre and treat ourselves to lunch out.
2. Don’t pre-warn your autistic children of your impromptu decision.
We hurried the kids along whist dishing out quick instructions to put their shoes on and go to the garage to get in the car.
First, the tension started on the way out to the garage….the crying. The tears began because we were going in Daddy’s car not Mummy’s. Then he wanted his BLUE booster seat not the black one, then he wanted to sit behind the driver like he ALWAYS does but Lucas was already there…..
Then it was the seatbelt was too itchy, then it was the sun in his eyes, and then Lucas looked at him funny…….and it went on and on and on for the entire 10 minute drive to the shopping centre.
He got so hysterical at one point that we actually turned the car around and went back to get his teddy bear. No sooner had we restarted the engine and reversed back down the driveway then Lucas started crying because he’d seen Harley’s teddy and now he wanted his puppy.
So back up the driveway and back inside the house to get puppy and it was now 1:20pm and all of our hunger was adding to the tension.
3. Ask your child what they want for lunch without giving them limited choices.
Yep….this one is a sure-fire way to get an overloaded child!
Mr Patient tried to divert Harley’s attention and get him to focus on what he wanted to eat instead of all the little sensory things that were tipping him over the edge.
Harley simply couldn’t cope with the prospect of having to make such a big decision (especially in his current state) so I stepped in and tried to narrow the choices down by telling him to choose between sushi or fried rice. (Because being gluten-free and refusing to eat salad kinda narrows the options down a lot!)
But that didn’t work…he wanted chips. We dug our heels in and told him that it wasn’t healthy enough and that we wanted him to have something reasonably nutritious, so the meltdown continued.
4. Add a third previously unmentioned choice into the mix.
We got inside the shopping centre and headed for the food court. The bonus was that by now, a lot of the patrons had already eaten and the food court was thankfully quiet and non-crowded.
Mr Patient asked Harley if he’d rather fruit salad and he actually agreed that he’d like it. So we took him over to the counter to order it and he burst into tears and threw himself into a puddle onto the ground weeping and rocking.
It took AGES but we got to the bottom of it…..There was rockmelon (cantaloupe) in the salad and it was TOUCHING the watermelon (shock, horror, gasp!)
Guess what peoples?
Yep…we gave in and not only did we give him chips for lunch, but ALSO greasy chicken!
Uh-huh! We were too exhausted to fight about it at this point and I knew that taking the path of least resistance was probably the best option at this point.
5. Try to bribe your child mid-meltdown with the promise of a new toy!
Ok…..I had NOTHING to do with this one…..I’m STILL rolling my eyes at the extremely ill-thought-out idea that my darling husband had!
Harley was still sobbing and thrashing so Mr Patient (in all his infinite wisdom) told him that if he stopped crying-he would buy him a Ninjago toy.
I wanted to slap him! I couldn’t believe that he still thought that this was a normal run-of-the-mill tantrum and that it could be resolved with bribery!
As much as I adore Mr P, he can really be a newbie when it comes to learning how to deal with meltdowns and their triggers!
Anyway….after we’d all eaten, Harley announced that he now wanted his toy, so we started walking towards the department store but Mr Patient spotted a gaming store with a new Wii game in the window so like the gaming nerd that he is…he stopped to look at it.
Immediately, Harley ran over to the latest Sonic game and started jumping up and down on the spot begging to have this instead of a Ninjago. The problem was that is was almost 8 times the price so there was no way we would even entertain it!
(Especially since I thought the whole buying a toy idea was ridiculous anyway!)
Cue another fit. A screaming, crying, kicking, hitting, flapping full-blown fit.
Lovely. Right in full view of hoards of passers-by.
I grabbed Mr Patient and started barking at him that this was all his fault, that he should have known better than to walk into that store en-route to the department store and that I thought the whole toy-buying idea was stupid in the first place and that I couldn’t BELIEVE how misguided he was at times!
He looked at me bewildered and said that he only offered that in the first place to try to determine if the fit in the car was really a meltdown or just a silly tantrum.
His reasoning was that if it was a tantrum, it would immediately disappear the second a reward was offered because if it was a meltdown, NOTHING would pull him out of it.
Ah…now I started to see his point even though I still didn’t exactly agree.
I guess that he was partially right…. Although the meltdown did subside a little once the toy was offered….it didn’t completely disappear because the trigger for it was that too much pressure and impulsive things were put on him from the get-go.
I took Harley to a quiet place in the centre and gave him big tight squishy hugs and brought him down again to a manageable level and proceeded to find a bewildered and lost looking Mr Patient and the other kids.
We finally made it to the store and headed for the toy department with the boys running ahead of us excitedly.
We heard them before we saw them…..The loud cries and hysterics.
Yup, you guessed it!
They were sold out. What were the odds?
** Mr Patient learned a VERY valuable lesson on the weekend. He has promised to do some more reading on parenting children on the spectrum.
I’m preparing the recommended reading list now (wink wink)!
Well….the word is out!
In September this year, My beautiful Mum is taking our whole family to …
We haven’t told the boys yet because it’s too soon for us to handle the endless questions that it will surely bring!
But today I did write a social story that I will start reading to them over and over and over and (you get the message!) leading up to the FOURTEEN HOUR FLIGHT!
I still have quite a few more to write because we are also going to San Diego to take them to Legoland and Mr Patient and I are planning to do something that we’ve always joked about but never thought we’d actually do…..we are going to Vegas to renew our wedding vows in an Elvis Ceremony!
But so far….this aeroplane social story is as far as I have gotten but I’m sure to be busy in the coming months!
** I scoured the internet for hours trying to find a suitable social story with no success so if there’s anything in this one that could help someone else , feel free to copy it.
I can’t believe how very writer-ish this sounds but it has occurred to me lately that I often get an inspiration for a blog post in the strangest of places at the most inopportune times, so I have started keeping a notepad and pen in my handbag for when inspiration hits or so I can jot down any thoughts that I’m thinking through. Because I’ve noticed how much quicker and more easily I can work through stuff after it’s down in print and not making my head hurt!
Some of you have probably already been doing this for years, but I am not an organised or scheduled person by nature so this never occurred to me before!
I was thinking a lot this morning about perception versus reality in relation to my children (and their friendships in particular).
This morning when I took Harley to school, Lucas walked him in with me and was approached by someone else’s little brother and he asked Lucas: “Do you want to be my friend?”
This is a question that wouldn’t have been responded to verbally in the past so imagine my surprise and delight when he responded with: “Yes, let’s go over to that tree”…and they walked off hand in hand!
My heart leapt for joy to hear this and I couldn’t stop smiling as I watched them play chasies around the bushes.
Lucas has never really been an “aloof” child so much as just not knowing “how” to be or have a friend.
Most children who are 4 going on 5 are already having play dates and spend a lot of time together either playing make believe games or starting to show major signs of understanding “sharing” toys and interests.
Up until recently, Lucas has seemed unaware of other kids altogether and has just floated around in his own little world!
After morning line up had finished and the kids all went to class, Lucas went up and gave his new friend a hug goodbye! I was floored!
I drove him to pre-school and when I pulled up in the carpark, a little boy came running over yelling: ”Lucas, Lucas” excitedly, “I’m SO happy you’re here!”
I smiled at him and asked Lucas to say hello to his friend. So he turned the opposite direction …towards ME and waved!
I spun him around to look at his little friend and asked him again to say hello and he waved again saying “Hello”.
Then the little boy grabbed his Mum’s hand and trotted off happily to the gate.
I grabbed Lucas’ backpack out of the boot and asked him what his little friend’s name was?
He said he didn’t know……And this is a VERY common occurrence with him.
He is STILL not sure of any of his teacher’s names and although they have made him a social story with all of their names and photos in it- as of yet he hasn’t connected the two.
I have often wondered about Prosopagnosia (facial blindness) and if it applies to him?
He recognises those in his immediate family (Mum, Dad, Harley, Ella, Grandma, Nanna) and a handful of close friends that we see regularly but no-one else?
The pre-school teachers tell me that he is very sociable and friendly and that the kids all seem to love him – which of course is great – but I wonder will it still be so cute when he is 10 and unable to call his friends by name?
My other son Harley often tells me that he has no friends at all but his teachers have told me that everyone in his class adores him!!
She said that he is always one of the first kids chosen when they are asked to find a partner and that the kids crowd around him asking what they can do for him!
And that the kids are now starting to realise that he has some different needs to them, they are helping him by doing things like: bringing him his weighted vest when it’s floor time- making sure that no-one sits in “his spot” on the rug (Hello Sheldon! ) and grabbing the class teddy to comfort him when he’s not coping.
Yet Harley continues to tell me that he has no friends???
So far…we have been really fortunate regarding the boys because I know that A LOT of ASD kids are targets for bullying.
I’ve been thinking this through and something big dawned on me!
I really am starting to see that a major factor in this is not necessarily brought on by our kids themselves because of their sometimes obvious differences that they display- nor the fact that younger kids aren’t usually as mean as older kids, but it’s actually a direct result of the way that the kids that they are around have been brought up and how or if they are taught about tolerance.
I came to this conclusion after my daughter Ella was bullied for 6 years straight ever since she was 4 years old and only in Prep.
Now…she is an undiagnosed (I believe) 11 year old aspie who is so high functioning that she has become brilliant at hiding all her stims and aspie traits and has learned to mimick the other girls and (most of the time) fit in.
But…..she was still bullied even as a 4 year old.
Wheras Lucas is noticeably “odd” and very different in his approach to other kids-yet he is accepted by the kids at his mainstream pre-school.
And Harley (who is by far the most “autistic” child) is way more “out there” than the other 2 put together but the kids LOVE him!
My theory is this: The bullying is NEVER our children’s faults. And it is not always because they are noticeably different.
It is just the kids that they end up going to school with.
Or maybe it’s just simply about girls being more bitchy then boys?
All I know is that we have been incredibly blessed when it comes to our boys and friendships but with Ella…..not so much.
She comes home tonight from a 2 day excursion to Canberra so this weekend, we will have a tired, emotional, irrational pre-teen so it could go either way!
Fingers crossed….watch this space
I’m all outta words. (Rare I know!)
So instead of trying to make up some pointless dribble to fill a page….I’ve decided to share three photos of Harley as a baby building up his immunity!
And yes. He still eats dirt.
And sometimes soap, he sucks his fingers, and his arms, and licks inedible things, AND people, AND furniture *rolls eyes*
Sensory issues anyone? :lol:
Losing my Dad just makes everything suck.
I’ll try not to make this a depressing post, but it has really become apparent to me lately that since Dad died…..it has affected so many areas of my and my family’s lives.
Take my beautiful Mum for example.
After she left here last week, she headed a few hours North to stay in her Aunty’s holiday home on the coast. The intention was so that she could relax a bit and treat herself to some much-needed down time in the week between Ella’s birthday and my sister’s little girl’s birthday next week. And what better way to do that than at a little cottage only a 30 second walk from the ocean…
I have spoken to her a couple of times on the phone and although she has said she is enjoying herself, I can hear the loneliness in her voice. She doesn’t know a soul in this little town and has no contact with any of her friends apart from the occasional phone call. At night, she sits alone in the cottage watching tv and waiting for it to be bedtime.
This is NOT the life I want for her! That’s depressing.
My Dad retired early. He was only about 45 from memory, so he and Mum did EVERYTHING together up until the day he died at 61. And I can honestly say that I have never seen another couple before or since that were as obviously in love as my parents.
For 17 years, they went grocery shopping together, they helped at charities together, they went for long walks together, they strolled down streets holding hands like teenagers, they often used to take weekenders in their camper trailer to little beachside communities and they made regular trips down to visit their 5 grandchildren in the 2 different cities that my sister and I live in. They were a team and they were meant for each other.
I remember in the last few weeks of Dad’s life….how loving, compassionate and caring my Mum was. I never once heard her complain about the continuous tests, scans, and Dr appointments that she faithfully took him to every week.
She was (and still is) a rock to my sister *Gabrielle and I, and she soldiers on and on and on.
Like I said…..Dad dying wrecked everything.
Dad used to do most of the driving, so they were able to visit me more frequently. Now Mum has to fly or catch a train because it’s too far to drive alone and I don’t want her to anyway.
Dad was like a pseudo father to Mr Patient because he lost his own Dad (also to cancer) years before. Now, Mr Patient has no-one to talk to or get into mischief with whenever we visit Mum.
I inherited my Dad’s awful sense of humour! We used to laugh at things that no-one else ever did and could never understand why other people didn’t think our jokes were funny?
Like for example: Q: What’s big and white and stands in the corner?
A: A naughty fridge!
I bet most of you rolled your eyes and cringed then. Dad would’ve laughed
And Dad would always make a point of telling me whether on the phone or in person that he thought I was a great mother.
Constantly. It’s like he somehow knew that I really needed to hear it.
He died before we got a diagnosis for Harley and the times that he was telling me this – I was still throwing my hands up in the air in exasperation because I couldn’t work out where I’d gone wrong with Harley and why I couldn’t get through to him on any level!
So to hear “You’re a wonderful Mum Fiona” when I was wondering how on earth I could possibly get through another MINUTE was medicinal and so so healing.
But then he died.
I hate that my beautiful mother is own her own. She’s lost the love of her life and her soul mate. Her travelling companion, her best friend, and her other half.
As much as I know my Mum is always there for me and is a pillar of strength , I am consciously aware that no-one is there for her and don’t want to drain her energy reserves either.
She has no-one to offload to at the end of a hard day. No-one to look after her when she’s unwell and no-one to bounce ideas off.
Every single day it kills me that I can’t live nearer to her nor her to us and this is where the sheer size of Australia is annoying to say the least!
Don’t get me wrong here…..I believe that my Dad is in a better place and that everything happens in God’s time, and often for reasons that we don’t yet understand, but right now, I’m just sad for my Mum and hating that I can’t fix it.
I really don’t understand why this is affecting me so much NOW?
I thought I was coping well (?)
This morning at Lucas’ early intervention group, we watched a DVD of one of Sue Larkey’s seminars.
I was the only egghead who took notes during the DVD this morning because I crave ASD info like chocolate at the moment. I believe information is POWER!
For those that aren’t familiar with Sue….you can read about this amazing woman here.
And I’m not sure if this link will work , but you can visit her on facebook here.
I have written down here the main points that resonated with me and although this is longer than my usual posts – I hope you take the time to read it because Sue is a fountain of wonderful information!
What I find fascinating about autism, is that you can never know everything there is to know about it.
There will always be new information just around the corner and often things that you’ve heard before but forgotten about are brought back to your memory when it’s triggered by another point.
And lets face it: Parenting a child on the spectrum will continue to be a learning curve forever!
In this DVD, Sue said that back in the days when we as parents went to school- the teacher would start Monday mornings by writing the date and the day on the board and asked everyone to copy it into their notebooks.
Nowadays it is a lot different.
Because nowadays the teacher will often start Monday mornings by asking the children to write a short story outlining what they did on the weekend.
Sounds easy enough right? Well, no…..not if you’re a spectrummy kid. This is a task akin to climbing Everest!
Sue said that the biggest problem in education today is that it has become too problem solving based .
She then said that these children are unable to problem solve without asking for help which most of them don’t do. (Don’t know HOW to do).
So they either become disruptive, get up and move about or sit there holding their pencil in mid air and have nothing to hand in as a result. (That’s Harley right there!)
The solution is for parents to take photos of what the children did on the weekend and send a few of them to school with them to use as visual prompts.
For example: They look at the photo of the soccer field and they are then able to write about their recent soccer game.
Or they see the photo of the park and they are then able to write a short story on the scooter riding they did on the weekend.
(This is all wonderful but I have to admit that it overwhelms me a little….there’s a lot of organisation and planning ahead that needs to be done on my part until it becomes habit!)
Sue then went onto further illustrate the importance of teaching our kids to find other ways to communicate by using the “French Patisserie” analogy.
In this analogy, she asked us to imagine that we had boarded a flight to Paris, and after we had touched down at the airport , we caught a cab into the very heart of this famous city in search of one of their much desired patisseries. But upon arriving at a patisserie, it occurred to you that you had left your purse in the taxi which was now long gone.
You didn’t speak ANY French and had absolutely NO other means of getting any Euros.
You didn’t know a single soul in Paris and you had no access to an interpreter at all. Add to that the fact that you were starving and hadn’t eaten in a couple of days.
(She also told us that we were to imagine that we were NOT allowed to use ANY gestures or facial expressions) to convey our message to the baker that you wanted one of his mouth-watering delights.
So what would you do?
* Would you try the “snatch and run” technique?
* Would you start yelling at them loudly in English HOPING that they would understand what it was that you wanted?
* Would you begin pacing up and down the shop “hoping” that someone notices and steps in on your behalf and offers you assistance.
* Or would you throw a fit because you were SO hungry and SO frustrated at the circumstances surrounding and overwhelming you that you didn’t know how else to respond?”
Wow….you can see where she was going with this!
And it’s true….I was then able to put myself in my child’s shoes and imagine how hellish and difficult their lives must be at times!
I have noticed my boys respond in all four of these ways at times and it all made me even more determined to equip my kids with all the necessary tools they need to survive!
Sue also pointed out the absolute importance of how we use our words to speak to our children.
For example: Imagine an autistic child lining up all their Thomas engines.
Now….Where is the child?
They are sitting in front of or behind the engines looking at them. They are NOT a part of this line up.
So when a teacher asks a spectrum kid to “line up” and they don’t …it’s because there was no reference made to the fact that they were supposed to be a part of this line up. It’s rarely disobedience.
They usually stand back and watch the other kids…line up! Just as they would with the Thomas trains!
The next point was: Processing and hearing are different things.
Often our ASD kids simply cannot put high and low frequencies together.
Ie: they hear BEST when things are said in simple language with a monotone voice.
And she’s right…often when I’m frustrated with their behaviours or a situation, I will raise my voice and shriek something like: “FaroutIcan’tbelieveyouhavegoneanddoneit againwhenareyougoingtolearnit’sdisgustingandIhateit!”
And I’m met with blank stares.
But when I walk up and physically touch one of them on the arm to get their attention and say in a calm, steady monotone voice:
“Would you please stop blowing bubbles in your drink. Thank you”. I get instant results.
Another tip is to make sure that you use their name in the sentence because often our kids won’t realise that the request is for them as well if it’s said in a generalised form.
ie : In a classroom setting, if the teacher was to say:
“Alright everyone, after lunch it’s library time so make sure you have your library bags ready to go as soon as we come back after the bell” our kids would likely not hear the request or know it was also intended for them and end up in trouble because they appear to be disobeying the command or not complying.
Instead, the request should go something like this:
“Alright everyone, after lunch it’s library time so make sure you have your library bags ready to go as soon as we come back after the bell”.
“Harley (waits for him to look up) please get your library bag ready now”.
And it wouldn’t matter if the general request went over his head because he would be receiving the small part of information that he required to complete the task.
Is anyone else having light bulb moments here too?
There are three more quick points that really stuck out at me so I’m sorry if this post is too long but I really lapped this up and I wanted to share it!
Firstly: If your child needs to wait, then this causes anxiety more often than not.
Solution…..give them something to hold. This object then becomes their focus NOT the fact that they are waiting. And try to keep waiting periods to a minimum because anxiety increases the longer they need to wait.
Secondly: These kids communicate better during movement.
We all know by now that asking your child to “look you in the eye” causes them to shut down their processing as looking in the eyes renders them unable to listen at the same time, so allow them to look “in your direction” but not at you. And MOVEMENT is the key:
Walking and talking at the same time is brilliant for these kids.
The sensory input they are gaining opens up a part of their brains that then allow them to process what you are actually saying.
If you make them stand still and look at you, you will only get stock standard answers…..ie : “I forget”, “I didn’t do it” and “ I don’t know”.
And lastly: The myth that we shouldn’t still be providing visuals for our kids when they reach high school.
She explains this brilliantly by asking us to imagine a child in a wheelchair….
Now…when that child starts kindergarten, what will they need to access the school grounds? A ramp.
And when they start secondary school will they still need a ramp?
And yes definitely for college or university.
The circumstances change ie: In kindergarten, the mother would most likely push the wheelchair into school for them and pack their school bag and hang it on the back of the chair.
In Secondary school, they would probably be then able to wheel themselves up the ramp having packed their own bag and by college, they would now be possibly even able to manage a few small stairs.
But the fact remains that they will ALWAYS need a wheelchair and that won’t change.
Just like our kids…..they will learn coping techniques, survival strategies and self regulatory inconspicuous movements but they will STILL HAVE AN ASD!!!!
So for a high school teacher to look at one of our kids and say “He looks fine to me, he won’t need visual reminders or verbal instructions” is like telling the child in the wheelchair to stop being an attention seeker and forcing them to get up out of the wheelchair and walk!
(the room was filled with gasps then!)
Please let me know if this helped anyone. We will be watching the rest of the DVD another day and I’m happy to be the little dork and take notes again!
I decided to dedicate a few posts this week to my other 2 kiddies Ella and Lucas as the main focus of this blog has been on Harley lately.
I have mentioned before that we did start the process of seeking a diagnosis for Ella but stopped because she asked us to. At the moment she appears to be coping wonderfully both academically and socially at school but if in the future we notice a massive change in either of these areas….we will re-evaluate again then and start to explore our options.
We do however still see a LOT of aspieness in her daily (and she agrees), and I’m comforted by the likes of Lisa , Laura and many others by seeing what wonderful and inspirational adults they have grown into despite growing up not knowing why they were they way they were.
I take GREAT delight in reading these ladies blogs and know that my Ella will definitely grow into another fine adult because diagnosis or not – I will do my darndest to see to it that she is equipped with all the necessary tools to get through life.
I wrote this poem for her whilst i was *supposed* to be listening to the sermon today in church! :O Um-Ah!
My girl, I’ve watched you standing back,
Observing all the rules,
And learning how to talk and act,
So you’d fit in at school.
You copy words, expressions too,
But they are not your own,
‘Cos everything I see you do,
Are diff-er-ent at home.
Are you afraid that you won’t be.
Accepted for who you are?
Your wonderful self and personality,
Outshines your peers by far!
I’m just so proud to be your Mum,
I love your gentle heart,
I love your quirks and sense of fun,
I have right from the start!
So please just know that I am here,
Whenever you need hugs,
I’l comfort you through ALL your fears,
Just because I am in love xxx
My baby Lucas turns 5 in just a couple of months and will be old enough to start school next year.
Actually….he will by law HAVE to start school in 2011, and between you and me….I’m nervous.
Not because I’m dreading the mother-child bond being broken for 6 hours a day, but because I seriously wonder whether or not he’s even ready.
Most people who read this blog would be aware that the majority of my posts are about Harley and how he presents with his brand of autism but have probably noticed that I rarely write much about Lucas.
Well….there are a couple of reasons for that.
Firstly – Harley takes 80% of our time, energy, brain space and motivation that seriously….there’s not a lot left at the end of each day. And frankly….he alone provides more blog fodder than I could possibly get through!
And secondly – because I’m still in a really funny place about Lucas’ diagnosis at all.
He does have an official diagnosis from a paediatrician as “Aspergers Syndrome” but I question that daily even as his own mother.
But don’t get me wrong here….I don’t question that he is somewhere on the autistic spectrum, I just have trouble getting my head around the idea that him and Harley share the same diagnosis.
Yes, yes I know…..it is a HUGE spectrum and no two kids are the same but the way that he and Harley present couldn’t be more opposite so to have the same diagnosis seems rather odd!
I spent months studying Lucas, observing his play and watching his attempts at social interactions trying to convince myself that it was just “learned” behaviour from spending so much time with his big brother but eventually, I had to admit that it really was more than that.
Lucas’ speech delay was enough of a concern to schedule a Paediatrician’s appointment so I thought I may as well “throw the facts out there” and let the Dr take the lead where he wanted to.
He diagnosed him on the spot. He told me that he had been observing him every time I brought Harley in for an appointment and had noticed things even then.
I was surprisingly calm. I think that somewhere deep down, I had already prepared myself for this so reacted accordingly.
He goes for his CATS assessment next week and I have been filling out all the paperwork they sent me in preparation.
There was also a section that I had to get his pre-school to fill out which they did for me last week. They believe that he has aspergers but admit that they really don’t see it a lot. And that’s true. Even I as his mother have to admit that there are times when I don’t see it as clearly as I did with Harley.
I noticed in the report that it contained things such as :Lucas has minimal verbal communication when playing alongside peers. Lucas wriggles a lot during story time. Lucas sometimes needs questions repeated. Lucas does not initiate conversations .
And they have told me that he doesn’t ever call the teachers by name but instead waits for them to look at him before asking for something.
A friend of mine has reported that she has known him to stand behind her and make vocal noises to get her attention and when he has it, he will then go in for a hug but he won’t approach her.
He stands “beside” the other kids but appears completely oblivious to them during play. He has NO concept of sharing, turn taking or waiting and sometimes I can’t even get his attention unless I physically touch him on the arm. He quite often seems to be in daydreamland.
Another big thing I noticed when I read the pre-school form was that a lot of the multiple choice questions in the survey were answered in a completely opposite way to how I would have answered them in the home environment.
So this shows me that he is very different in the home to what he is at pre-school.
That’s high functioning if you asked me.
They wrote that there was no indication of a delay in receptive language but that there was a significant expressive delay.
But when he had a full report done by his speech therapist last year, she found that when using the OWLs –Listening Comprehension Scale that he only scored 16 and the normal range for his age group should be 16 to 85, and the expressive result was only 10 (16 to 85 being the average range again).
So I’m really confused now and don’t know which way is up!
I see it then I don’t see it than I do again and around and around in circles!
I have never once, not-even-one-day doubted Harley’s diagnosis since day dot. I knew from when he was a baby that something was very different about him, but Lucas…..I JUST DON’T KNOW!
* I convince myself that Lucas is just quirky and then I catch him lining up his cars in colour order.
* I tell myself that it’s just a speech delay and then I hear him counting to himself while he paces around the room.
And sometimes when I am sure that he is just “copying” his brother…..I notice him being perfectly calm during one of Harley’s epic meltdowns but then half an hour later he is in hysterics himself because I gave him a drink in the wrong cup!
I think I need to just switch my brain off indefinitely!
Or at least until I get the result from his assessment!
Watch this space …..
Ok. Who needs a laugh? It’s at MY expense!
Righte-o, here goes…..
My husband and I lease our vehicles and they get replaced every 10,000 kms and we don’t actually own a vehicle that we can call “ours”. Because of all the driving that Mr Patient does for his job, he covers so many kilometres that he usually swaps cars every 2-3 months but for me , it’s more like 12-18 months.
Previously, I had a gold x-trail and I LOVED it!
The kids dubbed it “Goldilocks” which was a cute name
It was the perfect size for the kids and beautiful to drive and not too shabby to be seen in either! But the kms were close to reaching the limit a few weeks ago, so it was time to get a new one.
Now we are saving money at the moment for a trip later on in the year so Mr Patient figured that a good way to save some money instantly was to lease me a smaller (think TINIER) car. Ok…..I can deal with that
But then I was delivered THIS!
I looked at my husband and he was bent in half laughing himself stupid!
Harley took one look at it and said: “I’m not getting in a pink car, no way, not gonna happen” with the dramatic ‘talk to the hand’ gesture to go with it!
Ella said: “Daaaaaaaad! I can’t go to school in THAT!”
But Lucas ran over to it and jumped up and down excitedly!
Ella said that it looks like one of those jelly belly beans. The cotton candy flavour to be exact! So she named the car “Candy” for short.
And to add insult to injury……not only do I have this car for the next 12-18 months, the number plate has the initials of a very vulgar slang Australian word.
And no. I’m not going to tell you what it is!
But it does have one redeeming quality: It is dead easy to park – it would fit on a postage stamp!
I hated today.
Well, not all of it, but a huge part of it.
The day started badly with the kids fighting before I even made breakfast and this ALWAYS starts Harley off in the wrong frame of mind.
I seriously can’t believe the things that my kids sometimes choose to fight over. Does it really matter who gets the blue bowl? (That was a rhetorical question…….of COURSE it matters!)
Also, Mr Patient had a late start for work and was still here all morning. He told the kids he was going to take them to school as a surprise!
Sounds nice right? Like a real treat for them?
Well, yeah, if your kids are typical and can cope with change…
Usually, he’s well and truly gone before the rest of us are even awake so just having him still here threw them from the get-go let alone the new transport plans!
I did however have a day to myself because it was one of Lucas’ pre-school days, and I got a lot of things done.
This afternoon when I picked Harley up from school, I only had to look at him and I knew what was coming. He was absolutely riddled with anxiety…..The telltale vacant scared eyes, the drooping head, the downturned lips, the deliberate shoulder hunch and his toes kicking the ground forcefully.
Once we were away from his teacher and most of the other kids, he threw himself down on the grassed area out the front and rocked and cried and moaned hugging his knees to his chest.
My baby was broken and I still have no idea what happened.
I sat down beside him on the grass and put my hand his leg to let him know that I was there. I knew that I couldn’t talk to him.
He wasn’t present anyway.I felt so helpless and useless.
It was almost like he was in a mixed state of flight AND fright if that’s even possible!
After sitting next to him for a while watching the tears gradually lessen and his contorted frown ease, I convinced him to come over to the car with me.
He only got 3 steps closer before collapsing to the ground again in a blob of tears so I picked up my 21 kilo child and carried him instead.
It took me several attempts to leave because every time I would do up his seatbelt, he would quickly undo it and climb out of the car and run away and it took me almost half an hour to finally leave the school today.
Afterwards, I was so drained, so emotionally exhausted and so frustrated that I got home and actually shut down myself. I settled Harley on the sofa with his teddy and a DVD then locked myself in my bedroom and cried for nearly an hour.
I HATED not being able to get through to my child. I felt like a failure and completely fragile!
THIS is the part of autism that I really really hate. I can’t stand seeing him robbed of the basic ability to function and communicate. It sucks.
Homework was left undone, dinner was full of more tears and getting him to bed tonight was a nightmare!
He’s only been in his room for a few minutes when he walked out and said to me “Mummy, my brain is going too fast and my eyes won’t close”.
But then…..tonight as I was cleaning up and doing a last minute check in bags that I’ve packed everything I’ll need for tomorrow, I noticed that there was a new message flashing on my mobile phone.
It was from another mother at the kids school. We don’t have kids in the same grades but we have become great friends and her lovely 3 kids are all typical and thriving. We have nothing in common as she’s still in the baby stage but we get on fantastically!
Fi, you’re a lovely mum, I watched you this afternoon with Harley.
You were so calm, I’d flip out not knowing what to do if that were my child.
Well done, love *Julie xx
And instantly my spirits were lifted.
I’ll make a point of telling Julie tomorrow what an amazing gift she gave me tonight by sending that. Because of her little gesture, I am now able to face tomorrow with a renewed energy and a heart full of thankfulness and joy.
So pay it forward people……. If you see a Mum struggling, tell her how wonderful you think she is.
You never know….might be instrumental in enabling her to keep on putting one foot in front of the other!
* Not her real name…..
Well….My Mum left about lunch time today
Harley cried at school this morning knowing that he wouldn’t be seeing her this afternoon and Lucas was miserable as well. All 3 kids were fighting and just generally being difficult on the way to school and it didn’t occur to us until later that they were just sad about Grandma leaving.
I even “punished” Ella for being a smart mouth to me in the car by making her hold my hand as I walked her into middle school and made her hug and kiss me goodbye in front of all her friends!
( HOW EMBARRASSING! I know….What a mean mother! But - it worked, She was super nice to me this afternoon!
It’s been a tough afternoon with all of us moping around the house dragging our feet and lacking in motivation!
It’s time like this that it really sucks that she doesn’t live closer :( But we did have a very enjoyable morning together all the same.
I have always been a fan of “cheap entertainment”.
No. Not that kind!
But the kiddy kind
Mum and I went to a local second hand bookstore and they were selling children’s books for only $5 a crate! So we bought two and ended up with 124 books in total!
Now I just need to hide them from Mr Patient until I have a chance to ease him into it gently! LOL
Last week I went through all of their bookshelves and removed the ones that they no longer read & gave them to charity but after today..I think our local second hand book store will be receiving a lot more of our unwanted books!
There were Ben 10 books, Thomas the Tank Engine books, Aircraft books, Dinosaur books, Space books, Atlases, Kid’s dictionaries and lots lots more!
I divided them into the age appropriate groups for the kids and into their own individual box and as you can see: They were in HEAVEN!
And yes…..they did empty the recycling bin ALL OVER THE FLOOR!
But look how happy they are!
Who needs expensive toys eh?
THIS mother makes her kids play with the garbage instead! :lol:
Oh, and now that Mum’s gone…..Expect LOTS more blogs from me. I have much to tell
I’m stepping out onto a very risky limb here, but it’s something that’s been playing on my mind quite a lot lately, and I really feel the need to write this down.
I really hope I don’t scare you all off and you come back after this…..?
Anyone who has been reading this blog for a while will have already have picked up that there are two main themes running throughout my life.
1. I’m a God believing Christian.
2. Autism. It’s all around me, and it’s such a part of my everyday life that it’s sometimes all consuming. So it’s stand to reason that often these 2 major parts of my life are bound to meet and cross over at some point.
And they do exactly that every.single.day!
Now…..before you click away from here – I’ll first point out that the sole purpose of my blog is a personal journal and learning space that I use as therapy and to help me to work through my own life experiences living with autistic children.
It’s not and never will be intended to be used as a preaching platform. Whilst I don’t hide behind my beliefs – I have another blog that I use specifically for my “Christian stuff”.
This is my “autism blog” (for lack of a better description) and what I’m writing about next, is all about what I’ve learned and discovered since my boys were first diagnosed with autism. I have learnt a LOT about myself and my own personal beliefs along this journey too.
There is a group of well-meaning Christians that have the views and attitude that AUTISM MUST BE HEALED!
And you know what?…… I’ll let you in on a little secret……I was once one of them.
(Shock , horror, gasp!)
Yes. I took Harley to a number of healing ministries and prayer groups to get him “healed of autism”. I desperately wanted him to be like “everyone else”.
I believed what people told me that he was “afflicted” and “broken” and “in need of deliverance”.
Frankly….I’m now disgusted in myself that I was so narrow minded and naive!
Yes, I do believe that God CAN heal autism…..but I am no longer subscribing to that school of thought. I now see that trying to remove autism from a person is like trying to remove freckles.
They are part of what makes that person unique, and special and “who they really are”. To remove autism, you are essentially removing the very essence of what makes them “them”.
I no longer believe autism to be a sickness, a disease, a defect or a design fault.
It’s just “different”. Not wrong. Different.
God doesn’t need to heal my boys of autism, *I* need to learn how to be their mother and cherish them for who they are and accept that autism is part of WHO THEY ARE!
Don’t get me wrong though……if I could snap my fingers and only remove the parts that make their lives so.darn.hard….I would.
But it’s just not that simple.
Because to remove autism….you would also be removing their character, personality, adorable quirks and nuances that make them unique and wonderful.
You all know that autism is not a learnt behaviour. It is intricate wiring, programming and a marvellous design that is so darn special so why would I want to take that away?
As soon as I shifted my focus onto celebrating their uniqueness and individuality and stopped focusing on all the “woe-is-me-my-life-is-so-darn-hard” rubbish, I was then able to move on to a much better place of peace, contentment , and developed a much deeper and compassionate love for them than I had ever thought was possible!
Today, I remembered a post that I wrote not long after I first started blogging called “What-if?” and after re-reading it, I realised that God was already preparing me for changing my way of thinking even way back then.
Here it is……What if…….. one morning, I was to wake up and find my children had been completely “cured” of autism? What if……..all the special little idiosyncrasies that defined them disappeared as well? What if……..they were suddenly able to start and continue meaningful conversations with people? What if……..they realised that they could read my facial expressions? What if……..they were now able to self regulate and no longer had the urge to stim? What if……..school work suddenly became manageable and they could understand it easily? What if………I never had to draw cartoons on a whiteboard again? What if……..a trip to the shops was as simple as in – pay – leave? What if……..you could go to any noisy place without earphones and a quick escape plan? What if……..a crowded cinema with bright lights wasn’t something you needed to be tentative about? What if……I was able to throw away all the sensory toys that are used to calm or stimulate my child? What if……..they were able to control themselves in difficult situations and deal with their emotions without becoming overwhelmed? I’m not sure that if that was offered to me , I’d take it………….. You see……. I love that my children are special. I love that they are unique. I love that they are quirky. I love that they are kind, compassionate and gentle beings, And I love that they are individuals. To take autism away, you’d also take away the essential parts of them that make them who they are. They were perfectly formed by a perfect God. They are a blessing and a joy. They are just the way they are meant to be and I am just the
mother they need. ***
So….is anyone brave enough to comment or have I crossed too many lines? LOL