Seven more days of school left for my children.
Twenty one more lunches to be made.
Fourteen more shoelaces to be tied.
Also fourteen more shirts to iron.
Two more child free days, two more speech therapy appointments.
One more social group and one frazzled and worn out mother.
Not that I’m counting!!!!!
Roll on Christmas I say!!
Sorry it’s grainy and bad photography….I forgot to take my camera to Lucas’ Early Intervention Christmas party so I had to use my mobile phone and this was the best I could get.
Oh yeah…..my child is the smallest one with the Ben 10 tattoos on his arms and picking his nose and eating it!……I’m SO proud *rolls eyes*.
I have had a very full-on couple of weeks.
In fact, all the occupants of the madhouse have.
Emotions have run wild, opinions and judgements have raised their ugly heads and tensions have run extremely high.
I am begging for the end of the year to hurry up and come. It is time for all of us to take a break.
We all need to rest, recuperate and recover.
It has long been documented that families that have autism in them are constantly under a lot of pressure.
But this is just ridiculous.
Harley has been hitting other children at school, he is obviously not coping.
His punishment?….writing words out of a dictionary….
I think even the teachers have had enough. I’m far too tired to even jump on this one.
I had a meeting with the special needs department through the week. I was basically told that if I availed myself and helped out more, my child would possibly receive better treatment. I have no idea if I mis-heard this or whether my negative frame of mind put the wrong filter on it but whatever it actually meant was lost on me because that’s what I heard.
I was all outta words…..And I still am.
I was completely unable to even give an intelligible response so I didn’t.
*****
Onto some better news:
Lucas has come a long long way in the toilet training department.
Tonight he asked to go to bed in big boys undies and wouldn’t let me put a nappy on him. Not sure how that will go but we have plastic on the bed just n case!
Earlier in the week he did his first number 2 on the toilet at the shops and he was so super proud of himself!
He went up to six different random people in the shopping centre and told them that he pooed in the toilet……their reactions were hilarious!
They were probably thinking that it was odd that a four-and-a-half year old child was boasting about this as they were assuming that he had been trained a while.
But that’s just something that you get used to when you have ASD children who don’t follow society’s unspoken “rules.”
Most people just smiled politely but one man gave him a high five and said “High five for number two”!!
Hopefully, he continues along this path 
My week……………….
~
Fiona, did you ring to get Lucas’ blood test results back from the Dr yet?
No, I forgot to ask, I’m just so damn tired.
~
Fiona, we missed you at coffee yesterday,
Oh, sorry! I forgot, I’m just so damn tired.
~
Fiona, are you coming to the parent helper morning tea?
Maybe, If I don’t forget, I’m so damn tired you know.
~
Fiona, how did you go finishing off that questionnaire?
Oh drat, I forgot, I’m just so damn tired.
~
Fi, Can you remember to post that parcel today please?
Sure, I’ll try not to forget, I’m so damn tired.
~
Mum, did you put vegemite on my sandwich like I asked you to?
No, sorry – you have cheese today, I forgot, I’m so damn tired , my brain fuzzed up.
~
Muuuuuuuuum, I can’t find any clean socks!
Oh crap, they’re still in the laundry hamper, you’ll have to wear a dirty pair.
But Muummmm!
Sorry, I forgot to wash them. I’m just so damn tired!
~
Fi my beautiful sweet wife, where’s the shirt you ironed me?
I didn’t. go and get one out of the wardrobe and bring it here, I’ll do it now.
But, I need it NOW -I’m running late for work.
Sorry, but I FORGOT, I can’t be expected to remember everything you know! I’m so damn tiiiiiired!
~
Hi Mrs *Cameron, Are you ready to do Harley’s IEP for next year? Did you bring all the necessary paperwork?
Uh, no……I forgot, I’m SO damn tired !!!
~
FI! – WHERE ARE YOU? WE ARE WAITING????
Oh poop!, I forgot, I’m still at home……I’m SO DAMN TIRED!!!!! I’ll be there in a minute!!!!
UGH!
**
**
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Today Lucas had his Christmas break-up party at the early intervention play-group that he attends.
(I was the only mother who forgot and didn’t bring a plate of food to contribute).Typical.
UGH!
Anyway, they did a gorgeous little concert for us, they shook their tiny little bells and sung along to Rudolph, Jingle bells and then they had a little party with all the usual sugar and preservative laden foods 
The parents of the children that will be starting big school next year were given their graduating certificates and all of us were handed scrapbooks full of all the work that our children have been doing this year.
And this is the part where my heart sank.
No, not because it was bad work, but quite the opposite.
I realised how much of Lucas’ growth and achievements I had actually missed.
I have been so stressed out trying to work everything out for Harley at school, fighting over homework, practicing social skills, doing OT therapy sessions with him, driving him here and there for this therapy and that therapy… and then there’s Ella’s issues.
I have been to and from the school to discuss the bullying that has gone on (thankfully not any more) and deal with the almost 11-year-old emotions and hormones that are flying around rampant in her at the moment.
Because of all this- my easy-going, compliant and effervescent child Lucas has seemingly flown under the radar.
I tell you, having the 3rd child tipped me over the edge and caused me to function a lot less smoothly than ever before.
When I only had 2 children, I only had to divide my time 1/2 and 1/2 but dividing it into 3 (especially when they have high needs) is damn near impossible!
I have NO idea how parents of 4 or more children do it!
**
When Ella was little, she started SCHOOL at the age Lucas is now.
Yep. That’s right BIG SCHOOL!….
And I helped her learn to read, write and do simple maths before she even started.
I used to do it when Harley was in bed asleep. We would sit down with our little star stickers and our crayons/pencils and workbooks and I would spend hours preparing her for school.
She went to school able to write her full name, address and phone number and could read basic books.
**
When Harley was the same age, I couldn’t get him to sit still long enough to even learn the alphabet though I did try.
We did SOME handwriting and number practice but it would always end in tears, temper fits and hitting so I didn’t pursue it.
(Remember that he wasn’t yet diagnosed so I didn’t understand WHY he was like this then.)
I realised that you can’t compare your children to each other as they are so different and my mum used to say to me from very early on “This one learns differently, you need to make allowances”.
**
Now back to Lucas…..I found out for the FIRST time today that he can cut with scissors, trace over letters to write his name, draw pictures of himself, other people and objects.
…….*sigh*…….
It was hard for me to realise that I have never sat down with him and done any of these things.
I simply don’t have the time. And when I do have spare time, there are a hundred other things that need doing.
For me to even write a blog post like this – it can often take me an entire day of grabbing ten minutes here, 5 minutes somewhere else and 2 minutes somewhere else!
Then I hope for a break where I can piece it all together and type it up.
(Most of my blog posts are written in (my own version of) shorthand on a notepad that I carry around with me so that I can jot down anything that comes to mind and then cross my fingers and hope for the time to finish it off. – Usually not until after the kids are in bed at night.)
So, the lack of available time has left me with a child who has missed out on all the “fun” things that this mother did with her older kids but not with him.
I must have looked like mother-of-the-year when I loudly exclaimed “Wow, Lucas, you can actually use scissors!”………..One of the leaders looked at me surprised that I had not known this about my own son!
I didn’t even know he had even ever held a pair!
Then half an hour after we came home from E.I. – Lucas’ speech therapist came over for a session.
She commented on how well Lucas is forming sentences since she was here a fortnight ago and asked me if I had been working on it with him.
I wanted to tell her Yes.
SO badly I did.
I wanted to lie and make out like I’m Supermum who flies in with her cape and magically allocates equal time to each of her children and their specific needs and meets every one of them but I had to answer truthfully.
I had to tell her that I hadn’t even realised that he is forming sentences.
UGH!
She (who has no children of her own yet) told me that I needed to keep records of where Lucas is up to so I can track his learning curve and teach him all the scripts that he will need to survive in life.
That I need to repeat them over and over until they are second nature to him.
She told me to write down the phrases and words that he substitutes or says incorrectly so that she can work with him on them next time.
I felt like I was being scolded for being naughty.
So I told her that she needs to walk a day in my shoes before telling me what I SHOULD be doing.
I told her that I only have one functioning ear and three children and last time I checked only two hands.
I also told her that I barely have time to scratch myself let alone write out goal plans, targets and identify and articulate areas that he is struggling in.
I told her that this is what we are paying HER for.
(Yeah, I know that was stupid!)
It wasn’t that long ago that we were still attributing Lucas’ odd behaviours and delays to the fact that we thought it was learned behaviours from copying his older brother.
We honestly thought (and had convinced ourselves) that he hadn’t learned to talk because he was always with Harley who screamed more often than he spoke.
We also thought that once Harley started school, that I would then have the time to do one-on-one with him and help him to catch up!
Neither of us expected back then that he would ALSO have autism.
How did I miss so much of my child’s progress?
How did I become so engrossed in helping Harley to get by that I allowed myself to put Lucas on the back burner?
How do all you other mother’s do it????
SERIOUSLY???
Today’s post is a re-written, new and improved version of one of my very early posts when I first started blogging…
I felt like giggling today, it always cheers me up….so enjoy a look at the lighter side of life.
*****
I think my kids are funny!
But then – I also thought dumb and dumber was a great movie, and I think the sanitary pad ad on tv with the man sticking them all over himself and pretending to be a superhero is funny too so I may not be the best judge of humour!
Anyhoo……because my children are on the autistic spectrum they have a tendency to take everything literally.
And please understand that I’m not laughing at them but merely celebrating their wonderful take on life
**
One morning we were running a little late for school and I told Ella to clean her teeth in the shower to save time - I walked into the bathroom 10 minutes later only to find her showered, fully dressed and standing in the shower cubicle cleaning her teeth. She said to me:
“Mum, I don’t see how this is supposed to save time?”
***
Another time I asked her to help me clear the breakfast bowls off the table and because the dishwasher still needed unpacking from the night before, I asked her to just “toss” the dirty bowls in the sink and I would deal with them later.
So she did.
From almost a metre away.
And they ALL broke.
- She couldn’t understand what the problem was, I had said to toss them!
***
Harley is hilarious too.
He once bit his tongue while eating and started to cry so I gently asked him:
” How did you do that mate?”
And he looked at me like I was stupid and replied:
“With my teeth?”
**
He makes me laugh when I tell him to brush his teeth and he does - but without toothpaste.
You see I didn’t say “put toothpaste on the brush and brush your teeth” I just said “brush your teeth” .
So in all fairness, he was actually doing what I’d asked…..
***
Or I will ask Lucas to go to the toilet.
And he will do just that.
He will go and stand in the bathroom.
I didn’t specifically ask him to do a wee in the toilet. I just asked him to go to the toilet.
So once again – he thought he was being obedient!
Parenting ASD kids is all about having to learn a completely different way of thinking and looking outside the box because these kids don’t see things how we see things. Their brains are wired differently and our world is very confusing for them!
***
Last week, I was sweeping the kitchen floor and Harley went and grabbed the dustpan and brush and started to sweep up the pile of dirt that I had gathered.
He then looked at the dustpan full of dirt and asked me where should he put it?
So I told him to put it in the bin.
And he did!
I often see little examples of literal thinking in my husband as well.
Several times I have come home from shopping, and have put a load of washing in the machine before I left and I have told him that I have, and I come home only to find that the wet clothes are still sitting in the machine.
His response is:
” Yes you did tell me that you put a load of washing on, but you didn’t say that you wanted me to hang them out”…..
However – part of me thinks that he knows exactly what I meant and that he’s just trying to get out of housework………
***
Have a great weekend all…
This post was inspired by my lovely friend Laura over at Life in the house that Aperger Built
She is a proud aspie adult and a fabulous blogger and Mother.
Today – she wrote this BRILLIANT post asking for someone to teach NT classes.
Another friend Lisa from Alien Hippy jokingly said that I should teach that class!
HILARIOUS!
But it did get me thinking!
How exactly do you teach NT-ness?
My 7 year old aspie son has (correctly) pointed out to me that the tactfulness and skirting around the actual truth that we NTs regularly do is really in fact – just telling outright lies!!
Here’s a great example of aspie honesty:
Not long after we were married, Mr Patient and I both started to gain a bit of weight – you know the newlywed happiness thing – and one morning as I was dressing for work, my skirt felt a bit tight over my backside so I asked him:
“Honey, do I look fat in this”
He carefully looked at me up and down and replied:
“Yes, but at the moment dear, you look fat in all of your clothes so you may as well wear it anyway”.
I was absolutely shattered!!
I can look back now and laugh as I remember his bewildered face because he couldn’t work out why I had suddenly burst into tears, ripped off my skirt and sat on the edge of the bed crying!
His next comment of ” Stop crying, you will make us late” just set me off further!
I had him pegged as a heartless pig and sat quietly in the car on my ‘enormous’ behind sobbing all the way to work.
We talked about it later that night and he revealed to me that he thought he was doing the right thing by being honest?
His words were: “Why would you ask me if you didn’t want to hear the truth?”
“Because I didn’t think you would actually tell me! NO girl EVER wants to hear THAT!” I sobbed!
“So you wanted me to lie to you?” he questioned me.
“Well….yeah!” I almost shouted!
“Then why on earth did you ask me when you were assuming that I’d lie to you”……..
As I remember that whole situation now (and smile and giggle) I can clearly see that it’s a perfect illustration of aspie literalness and an NTs desire to hear what they want to hear….ie: feel good words not the truth!
Years later, a friend actually told Paul what the perfect male response should be to that loaded question:
“Do I look STUPID!”
***
In the Madhouse, we call Harley our fashion consultant. Whenever we put on an outfit – we go directly to him and ask if it looks ok because we KNOW that he wont sugar coat it!
He will always tell us if it looks bad and he also explains in great depth WHY!
He simply says all the things that most people simply wouldn’t admit - We have learnt that if you’re having a low self esteem day….DON’T ask Harley how you look unless you really want to know!
I can see how very difficult it must be for aspies to understand the whole social lying thing!
I wrote a post a while back and asked the sarcastic rhetorical question….”So what……do I now tell my kids that it’s ok to tell people when their breath stinks” and a couple of literally minded aspies actually answered me!
I’m not making fun of them in the slightest but instead I am now aware that their way of reading words and situations is completely different to mine.
I jokingly commented on Laura’s post that Lesson one in NT is that most NTs are liars.
Sad, but true…….how many times have you said :
“Don’t worry about it – it’s fine!“ When someones wrongs you and then go away and spend the next three days mulling it over as it continues to eat away at you!
Or worse still…..tell other people what this person did to you.
And yes, I have to put my hand up for this one. Guilty as charged!
Or told a white lie to spare someones feelings…..“No, your speech was wonderful” (snore, eye roll, grimace!)
How about: Having a conversation with someones that is boring you and smiling to their face and then turning around to your friend and rolling your eyes and pulling a “Get me out of here” face?
Come on…..we’ve all done it in some form or another.
I’m certainly not proud of it. And the more I learn about aspergers, the more I am aware of being truthful and not making their lives any harder than it already is!
So Laura….Lesson one…….Not ALL NTs are liars.
At least not the ones who have now read this post….ARE YOU PEOPLE!
LOL!
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
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Nowadays, it seems like every third person either knows a family with autism in it or have had a diagnosis in their own extended family.
There are many reasons (I believe) for the increase in diagnoses but I’m not going to write about that here today.
No, This post was inspired by a friend of mine whose child has recently been diagnosed with aspergers.
She was telling me about some of the well-meaning comments that she has received from family, friends and acquaintances and it reminded me of my early days!
It also inspired me to pen a letter that I would have loved to have given out when my son was first diagnosed!
*******
Dear Friend,
Yes. The gossip you’ve heard is true. My child has been diagnosed with aspergers disorder.
It is not ADD or ADHD (which are both VERY real and true diagnoses and NOT due to bad lazy parents who feed their children too much junk or refuse to discipline them).
Aspergers is also a “real” diagnosis.
It does not mean that I am a bad parent or that I have caused this.
It also does not mean that my child is “retarded”. You don’t need to speak to him like he is stupid.
He will notice if you are suddenly weird around him.
Please don’t be scared by the “a” word…..your child will not catch it from mine.
I promise.
I love that you want to help us.
Really, I do. …… However, comments such as :
“Oh, he looks perfectly normal to me” are not helpful.
He IS perfectly normal. He is just wired differently. That’s all.
or
“If there’s anything I can do….”
Don’t say that to be polite. Don’t say it unless you really really mean it.
Few people who have uttered that phrase know exactly what they are getting themselves into.
Only say that if you are truly committed to being a 24/7 support to a mother who is often volatile, unreasonable, irritable, exhausted or overly emotional.
Also, don’t get offended if I choose not to accept your help.
It’s because I sense that some people couldn’t handle the raw version of me or my son in a bad moment. It’s NOT pretty, comfortable or even politically correct.
It is what it is.
Don’t say: ” You’re the best mother for handling this…..I couldn’t cope!!”
That really irks me. Do you think I can always handle this???
I don’t have the option to not cope!
And while we’re on this, please don’t comment on how well I hold it together…..
Even the most together mother has learned that society doesn’t want to see the ugly side.
We have all learnt that in order to be accepted we need to put on our happy, “everything’s rosy” face.
On the rare occasions that I have lost it in public – I’ve seen people turn their backs, raise their eyebrows at other friends, step backwards in shock or simply freak out and walk away!
Remember that I am not autistic. I CAN read facial expressions and body language and I can tell that you are uncomfortable.
No-one likes sad Fiona….that’s why I don’t do it.
It’s that simple.
If you ask me “How are you”…..be prepared for me to fake an acceptable answer. I do this to spare you the gory details and I am giving you an out.
If you don’t really want to know. Take the out.
If you really care, phrase it differently….say ” Are you coping ok……honestly”?
And if the answer is no….don’t say “Well let me know if I can do anything, I’m only a phone call away”…
I won’t call you. I don’t want to be a burden.
A better way to phrase that would be: :“Ok, I’m taking Lucas for a couple of hours so you can have a rest”
Don’t give me an option. I know that if you say this you really want to help.
or say:
“Come on, we are going for a coffee…I insist”
Most of us ASD mothers don’t want to ask for help.
We don’t want to make other people have to deal with our crap. We feel on some level that it’s too much to ask from friends because we KNOW how hard raising them is.
And lastly, please please please don’t ever say ” I understand, I know how you feel…..” unless you also live it.
Otherwise – this phrase is my pet hate.
I understand that you’re trying to offer empathy, really I do. And I do appreciate that.
But unless you have a child who is also on the spectrum……it’s an insult to compare your tantrumming, socially thriving, occasionally bratty but otherwise typical child to my child’s autistic meltdowns.
IT.IS.NOT.THE.SAME.THING!
If it’s just the tantrums that you’re dealing with but not the obvious delay in reading facial cues and body language, discerning and joining in social situations, misunderstanding simple directions, covering their ears and screaming because of the tiniest noise that no-one else can hear etc, then you probably DON’T understand!
Lastly, I appreciate that you care enough to not avoid me. That means a lot right now.
The best thing you can do to support me is read read read and read more again.
Ask me questions, spend time with me and my son and make sure that you leave any preconceived ideas or opinions at the door whenever you visit,
Fi X
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?
Well…..it’s only Tuesday and already, I feel like I have completed a whole entire weeks worth of busyness!
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I’ve written before that I tend to survive on very little sleep and a lot of caffeine, and yes, I am aware that it’s not good to pump myself with as much coffee as I do, but for now…..I’m only jumping one hurdle at a time.
See, here’s how I look at it:
Raising kids is HARD WORK! And raising special needs kids is an extra challenge thrown into the mix. And I have previously failed at giving up caffeine and I have decided that it’s pointless trying to do this until I am ready.
And I’m not ready 
Plus. a lot of my tiredness is my purely my own fault. Often I go to bed far too late therefore not giving my body a chance to wind down properly.
But the reason for this is simple. After the children are in bed….this is MY time.
If I go to bed too early, I have less time to myself and I wake up being “Mum” again and everybody wants a piece of me!
And that really really sucks!
**
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I’m always hearing or reading that when you have special needs kids (particularly with autism) the children benefit from having a structured, organised and calm environment.
Anyone wanna tell that to my kids? They are the ones who damage the calm!
By nature, I am a fly by the seat of my pants type person. I’m very impulsive and like to make it all up as I go along.
I have had to learn to change in some areas to create an environment more conducive to helping the behaviour(s) of my children.
And it’s been REALLY hard. It’s been a real sacrifice to have to lay the natural tendencies that I have aside and force myself to become more organised and level.
I’ve had a lot of professionals tell me to start by writing lists.
But whenever I have done that, I end up mad at myself because I didn’t get even HALF of the things done that I should have.
And that’s why I don’t write them anymore. It’s too depressing!
I’m much better now at writing social stories, verbally preparing the kids and packing our own food for places where G/F is not an option ,but as for lists – nope.
I sometimes overdo things in the hope that I will get better results and I sometimes forget important things because I have put too much focus into another area that didn’t necessarily need it. But the important thing is that I’m trying.
And life is all about living and learning. It’s all about trying things until you find what works for you and your family.
I’ve tried to copy what works for other autism families and everything has come unraveled because my children are different to theirs, I am different and Mr Patient is also different.
Circumstances change and so then must your flexibility.
I now take pieces of ideas from other people and mold them into something that will work for us.
As soon as I stopped comparing myself to other families and realised that it’s ok to have our own ways – things became MUCH easier!
And as mothers there is already way too much pressure on us to be everything to everyone. It’s not physically possible – yet we beat ourselves up trying to do it all anyway!
I’m also finally learning that it’s ok to be exhausted.
It’s ok to let your guard down to close friends and family that you trust and to say “Pfft’ to society’s ideals that we should put on a “everything’s fine “ face all of the time.
It’s just all too tiring!
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I had a “phone a friend” incident myself just today-and it was just perfect.
She told me to get over myself and realise how far I’ve come since diagnoses and how much I am doing and to take my eyes off what I am yet to achieve.
Not sure if anyone else needed to hear that. But I sure did!
Sometimes, I feel like absolutely NO-ONE in my life really “gets it”.
I’ve had this letter stored neatly in my word files for quite a while now.
The website that I originally sourced it from is now no longer but I had already saved this months before.
Maybe because it’s the end of the year, but there is a consistent theme that is running through most of the blogs that I read, and that theme is mothers who are exhaused, over it and ready to walk.
And maybe there are others of you that wonder if you’re the only one that feels beaten , defeated and at the end of your rope.
Personally, I have been exactly there a LOT recently.
Reading parts of this letter has helped me enormously.
It explains why we as ASD mother’s feel so bleugh so often.
The letter below is designed as an information tool for grandparents of children who are newly diagnosed but I have highlighted the parts that I personally found particularly helpful.
Especially for Grandparents of Children With Asperger Syndrome By Nancy Mucklow
If your grandchild has been newly diagnosed, then welcome to the world of Asperger Syndrome.
It is a mysterious and sometimes overwhelming world, but it is not one to be afraid of. Even if you are saddened, disappointed or angry about the diagnosis, keep in mind that it’s for the best. The earlier the diagnosis, the earlier the intervention, and the better the prognosis in the long run. For some grandparents, the news seems to come right out of the blue. Sure, there were difficulties at school – but then, school isn’t as strict as it used to be.
And yes, there were some problems at home, but none of them sounded like anything that “good old-fashioned discipline” couldn’t solve. Why, then, do the parents seem to be clinging to this diagnosis as if it were a life-raft in the high seas? And why are counsellors, psychologists, occupational therapists and special education teachers suddenly getting involved?
Is this child really so different?
As grandparents, you have a lot of questions to sort out. But along with the confusion comes an opportunity to get involved where you are really needed.
Children with Asperger Syndrome have a special need in their lives for ‘safe’ people who won’t criticize them or put them down for their differences. They need loving, non-judgmental grandparents who accept them as they are and make a place for them in their lives.
If you can reach out to them, they will treasure your relationship with them for the rest of their lives.
I’ve read articles about Asperger Syndrome. But I still don’t understand what it is.
Asperger Syndrome is a type of autism, and autism is a neurological disorder that affects the way a person interacts with others and his or her world. It’s not a mental illness, and it is not caused by weak parenting.
In its more severe forms, it’s a disorder because it causes disorder in the life of the child. In its milder forms, it is more of a marked difference from the norm.
In our culture, which judges people on the way they interact with others, these disorder-differences can have a profound impact on a person’s life.
You’ve probably heard the parents complaining about the difficulties they’ve had with the child in the home – obsessive behavior, irrational outbursts, wild fears, and irritability over the smallest issues. These problems are not misbehaviors, but rather the child’s responses to an inability to comprehend what is going on around them and inside them. Some experts have called it a “mind blindness,” one that causes the person to stumble and bump into complex social situations that they can’t “see.”
Yet by effectively “blinding” the mind to certain aspects of daily life, Asperger Syndrome enables the child’s mind to focus in a way that most of us are incapable of.
They feel their feelings more intensely, experience texture, temperature and taste more powerfully, and think their thoughts more single-mindedly. In many ways, this ability to focus is the great gift of Asperger Syndrome, and is the reason why a great number people with Asperger Syndrome have become gifted scientists, artists and musicians.
It is as if the Asperger brain is born speaking a different language. It can learn our language through careful instruction or self-instruction, but it will always retain its accent.While Asperger adults go on to successful careers and interesting lives, they will always be considered unusual people.
I’ve never heard of it before.
That’s not too surprising. Pediatricians don’t study it in medical school, teachers don’t learn about it in education college, and the mass media rarely covers it. Until the 1980s, the condition didn’t even have a name, even though Hans Asperger’s original work was done in the 1940s.
It is only very recently that the condition has received much attention at all. However, as professionals are becoming more informed about the condition, they are discovering that there is a fair amount of Asperger Syndrome out there. You may remember an “odd” child from your grade-school years – one that had no friends, who was always preoccupied with some obsessive interest that no one else cared about, who said the strangest things at the strangest times.
Though the syndrome has only recently been named, these children have been living and growing up alongside other children for centuries. Some have become successful and happy as adults despite their undiagnosed problems, teaching themselves over time how to navigate around their deficits. Others have gone on to live lives of confusion and frustration, never understanding why the world didn’t make much sense to them. With the recognition of Asperger Syndrome, we now can give a new generation of Asperger children a chance at the same kind of life that other children have.
Great. So how do we fix it?
We can’t fix it. Despite all the marvels of modern science, there are still some problems that can’t be cured. Nobody knows what causes Asperger Syndrome, though most scientists acknowledge a genetic factor.
So the deficits your grandchild has can only be understood, minimized and worked around. They will require accommodating on everyone’s part. But in time, with proper programming, the child’s behavior and understanding of the world should improve. Specialized therapies for autism disorders are available, but in most cases, the parents must bear the full cost.
This can cause tremendous financial strain on the family. In addition, while most regions require specialized programming for Asperger children, these programs are rarely sufficient for the child’s needs. So the parents must fill in the gaps with their own home-made programming.
Drug therapies are also sometimes available in cases where extreme behavior needs to be controlled. But these drugs don’t treat the cause of Asperger Syndrome. So even if some of the symptoms can be relieved with drugs, the central problems still remain. A lot of kids have these sorts of difficulties.
It’s just a part of growing up, isn’t it? After all, he looks perfectly normal to me.
He is normal. And he has the capacity to grow up to become a wonderful, normal adult – especially now that he has been diagnosed and is receiving special training. But he is normal with a difference. The deficits that comprise Asperger Syndrome are not always readily apparent, especially in milder cases. The child is usually of average intelligence or higher, yet lacks what are essentially instincts for other children.
If your grandchild seems “perfectly normal” despite the diagnosis you’ve been told about, then he is probably working very hard to make sure he fits in – and it’s not as easy as it looks.
It is best to treat your grandchild for what he is – normal. But be prepared to take some advice from those closest to him regarding what is the best way to handle certain situations. It may not look like much to you, but Asperger Syndrome is a cause for concern. It’s not at all the same thing as the sort of developmental delay that some children experience, and a professional trained in its diagnosis can determine the difference.
Certainly misdiagnoses are possible. But in such cases, it’s always wiser to err on the side of caution. The wait-and-see method is risky when there is evidence suggesting a neurological problem.
So what if he doesn’t do what other kids do? He’s advanced for his age.
Unchildlike behavior doesn’t mean that a child is “too smart” for play-dough and playgrounds. Even if he is smart, he still needs to learn the skills of play, because play is how children learn – about things, about life, and about each other.
Precociousness is cute and is sometimes a source of pride for grandparents, but it is also often an indication that there is an underlying problem that needs to be addressed – and the earlier the better.
If Asperger Syndrome is genetic, then does that mean we have it too?
You might, or you might not. Usually at least one of the parents has some Asperger qualities to their personality, and so it seems likely that the same might be true of the grandparent generation. But before you get defensive, remember that Asperger Syndrome shouldn’t be regarded as a source of family shame.
It’s a difference more than a disorder. And we know it takes all kinds of people to make the world go around. Many famous people are believed to have had Asperger Syndrome, including Albert Einstein, Thomas Jefferson, Anton Bruckner, and Andy Warhol. It seems a touch of autism often brings out genius.
And that’s not such a bad thing to have in the family!
What if I don’t believe the diagnosis?
That’s your privilege. But keep in mind that the child’s parents believe it. They live and work with the child daily and are in a unique position to notice the deficits.
Because they care deeply about that child’s future, they aren’t concerned about the stigma of a label, as long as it means the child is eligible for the specialized programming she needs.
They have put their pride aside for the sake of the child and expect the same from the rest of the family. Consider carefully what could possibly be gained by refusing to believe the diagnosis. Then consider what could be lost.
The parents are already living with a great deal more stress than other parents, and they don’t need the added strain of skeptical or judgmental grandparents. Otherwise you may suddenly be faced with the pain of being unwelcome in your grandchild’s home.
The child’s mother looks exhausted all the time. Could that be a cause?
It’s more likely an effect. Consider what her life is like: she has to constantly monitor what is going on regarding her Asperger child, thwart anything that might trigger a meltdown, predict the child’s reactions in all situations and respond immediately, look for opportunities to teach the child social behavior without creating a scene, and so on – every minute, every day.
So it’s not surprising that she doesn’t feel like sitting down for a cup of tea with you and making small talk!
The truth is that the majority of mothers of Asperger children struggle with depression. While the special services she will receive over the next few years should help in some ways, she will still be the one to deal with the day-to-day difficulties of raising an unusual child. For many mothers, this means ceaseless work, often to the exclusion of their own needs. Their physical, mental and emotional exhaustion can have a profound effect on the health and happiness of the entire family. For this reason, mothers of Asperger children need those closest to them to give their full, unconditional support, both in words and in action.
I’d like to help out and get involved. But my son and his wife always get defensive no matter what I say.
Your son and daughter-in-law are now so used to defending their child that it comes as second nature.
Give them some time.
Once they are more certain of your support, they will be less sensitive. In the meantime, think carefully before you speak. Choose expressions that suggest sympathy and genuine curiosity, and avoid those that convey criticism.
For example, instead of saying ‘He looks perfectly normal to me’, you can say ‘He’s doing really well.’ Phrase ideas as questions, not judgments by saying ‘Have you thought about…’ rather than ‘It’s probably...’.
The most destructive things you can say are those that convey your lack of trust in their ability to parent, your disdain for the diagnosis, and your unwillingness to make accommodations.
Here are some real-life examples gathered from the mothers of Asperger children:
* ‘Just let him spend more time with us. We’ll whip him into shape!’
* ‘She may act that way at home, but she’s not going to do that in MY house!’
* ‘He wouldn’t act this way if you didn’t work.’
* ‘I managed all by myself with four kids. You’ve just got two, and you can’t handle them!’
* ‘Don’t believe everything those psychologists tell you. He’ll grow out of it, wait and see!’
* ‘There’s nothing wrong with her. You’re making a mountain out of a molehill. Are you sure you’re not the one that needs to see a psychologist?’
* ‘He’s having all these problems because you took him out of school for that home-schooloing nonsense.’
* ‘Everybody’s got to have a problem with a fancy name these days!’
* ‘All you ever do is complain about how hard your life is.’
Ouch!
Keep in mind that parents of Asperger children face these hurtful, humiliating attitudes every day - from bus drivers to teachers, doctors to neighbors.
Their tolerance level for such opinionated criticism is low, especially since they spend every bit of their energy raising their difficult child.
So avoid insensitive comments at all costs. And if you unwittingly blurt out something the wrong way, be sure to apologize.
So then what can I do for them?
Look for ways to be supportive. Let them know that there is another heart tugging at the load – and it’s yours. Keep on the lookout for articles about Asperger Syndrome and send them copies.
This shows that you are interested. Ask lots of questions about the special programs the child is in. Be enthusiastic and optimistic. Let them know you think they’re doing a great job.
At other times, be a sympathetic sounding board when they have difficult decisions to make, or when they just need to tell someone what an awful day they’ve had. If you live close by, consider how much you can help by giving the parents an evening out. If you’re not certain how to handle the child on your own, then spend some time shadowing the parents to learn how to do it – or offer to babysit after the child is in bed.
Whatever you can do to help will be appreciated.
What does my grandchild need from me?
He needs to know that you are a safe haven in a bewildering world. It may seem a lot to ask to be flexible with a child who appears to be misbehaving, but inflexibility will only put distance between you and the child. If the child’s manners and mannerisms drive you crazy, ask the parents for suggestions on how to set expectations for your house.
Learn to listen to the child when he says he doesn’t want to do something.
Maybe some children are happy to spend a couple of hours at a flea market, but think very carefully before dragging an Asperger child there.
Accommodate to his needs, or you run the risk of ruining your time together. When in doubt, ask the parents for advice.
But in general, just make the decision now that you will spend your time enjoying the child for what he is – a unique and unusual person.
That annoying stubborn streak you see in him is going to be his greatest survival skill. And even though he seems to be afraid of just about anything, recognize that he is like a blind person – it takes tremendous courage for him just to walk through each day.
Celebrate his courage and tenacity.
To tell the truth, I don’t feel comfortable around my grandchild. I have no idea what to do when he acts in his odd ways.
No one said it would be easy. But most Asperger kids are easiest to handle in one-on-one situations, so look for opportunities to go for walks or spend time in the workshed puttering around together.
Tell your grandchild your stories, especially those that touch on aspects of his life affected by Asperger Syndrome. He will love hearing about the time when you were a girl that you blurted out the secret, or how difficult it was for you to learn to tie your shoes.
You might tell him about times you wished you knew how to say something, or times when you wanted to be alone.
Stories like these can create a powerful bond between you and your grandchild. You may discover that all he wants to talk about is his pet subject. Don’t despair. If it’s something you know nothing about, then this is an opportunity to learn something.
Search for some magazine articles on the topic so that you always have something new to share together. In time, you may find that you have ideas for helping him expand his interests into other subjects.
But even if you do nothing more than listen and share her enthusiasm for his favorite topic in the whole world, your grandchild will learn that Grandma cares.
When you spend time with him with other people or in public places, it might be helpful to think of yourself as a seeing-eye dog. Remember, he is “blind” in certain ways. Point out trouble-spots and guide him around them, explain social situations that he can’t “see,” and narrate what you are doing as you do it.
By doing so, you’ll help him to feel more secure with you, and you’ll be actively participating in his special programming. One word of caution: watch the emotional levels. Asperger children often have great difficulty sorting out emotions.
If you get angry, the child could lose control because he is unable to deal with your anger and his own confusion at the same time.
Reign in your temper when the child is clumsy, stubborn, or frustrated.
In situations where you feel you really need to be firm, keep your tone calm, your movements slow and even, and tell the child what you’re going to do before you do it. Get advice from the parents how to deal with little meltdowns so that you are prepared in advance, but do your best to avoid triggering them.
Here are some simple DO’s and DON’T's to remember when spending time with your grandchild:
• Do praise the child for his strengths.
• Do get involved in the child’s interests.
• Do learn what sorts of activities are recommended for the child.
• Do acknowledge the child’s expressions of frustration.
• Do respect the child’s fears, even if they seem senseless.
• Do control your anger.
• Don’t tell the child she will outgrow her difficulties.
• Don’t joke, tease, shame, threaten, or demean the child.
• Don’t talk to him as if he were stupid.
• Don’t compare him with his siblings.
• Don’t feel helpless – ask for help.
And – DON’T talk about him as if he isn’t there.
Who wants to hear something funny?……. 
Well…
I got into trouble at the kid’s school this morning for talking during assembly!
I don’t know why I laughed but it was just so ridiculously amusing that a 35-year-old woman was told that if she wasn’t quiet, she would get detention!
And I guess, it was kinda deserved ….. If you think I write lots, you should hear me TALK! he he he
I remember that most of my school reports would say that “Fiona needs to learn to sit quietly” or “Fiona would achieve more if she applied herself”
Ok…..I know I shouldn’t make light of it – especially since I’m a Mum now and all that!
Oh my poor kids – what hope do they have!
In only a few short weeks, Ella will finish grade 5 and Harley will finish grade 1.
WOW Did that go fast!
I’ve been so proud of my kids this year, they have both been through some pretty major issues this year and both come out the other side only bearing tiny scars .
But instead of these scars reminding them of the pain and heartache they endured – I’ve been telling them to focus on how wonderful things are now.
Harley now has a really wonderful teacher who understands him , and Ella has made a wonderful friend in *Lauren. (BFF apparently is the term – She tells me I’m too old and like “totally” uncool and should have known that !)
Derr Mum! (Is that only an Aussie term I wonder??)
Anyhow, the end of the calendar year as well as the school year is drawing to a close and I couldn’t be happier.
We are all exhausted, emotional and getting more than a little bit silly!
Harley asked me yesterday what a woman is???
Yeah, I know – I thought it was odd too! – So I explained that Mummy is a woman and Daddy is a man- like what girls and boys grow up to be.
“Oh,” he said.
Then from the back seat of the car came a sing-song voice : “Take me hooooommeee wo-man!”
I almost wet myself laughing !! It was hilarious because there wasn’t the slightest hint of disrespect or cheekiness in there, he was just trying out the word!
He also “made up” a song after school yesterday and we all joined together and sung it on the way home from collecting Lucas from pre-school this afternoon….
She’s a fat fat woman with a fat fat belly ,
And a fat fat bottom that wobbles like jelly!!
He assured me that I am NOT the woman in the song but I have been enjoying the odd chocolate binge recently so maybe he’s seeing the back of me slightly differently to what I do!
Hmmmm?
Have a fun-filled slightly silly weekend all
x
My little Harley cracks me up!
He’s so literal that he has me in hysterics at least once a day.
Most of you who have been reading this blog for a while would know that his obsession special interest is aircraft. Particularly fighter jets / stealth bombers etc etc.
Most nights either Mr Patient or I read him a few pages out of one of his many aircraft books.
He is still not old enough to read then himself so he often asks us to repeat certain facts over and over once we read them out and they spark his interest.
We’ve noticed that this is the time that he seems to be recording the information onto his hard drive for later retrieval.
How many of you know that the Blackbird fighter jet has the record for the fastest flight ever??
It once flew at a speed of 3529.6 km p/hour ( 2193.2 miles p/hour).
Don’t worry…..we didn’t know either!
I am actually linking this seemingly useless information fact to my point…..stay with me, it’s coming soon!
The other night, we were sitting down at the dinner table talking and eating and there was a pile of “junk mail” (toy catalogues) sitting beside Ella.
She picked one up and pointed out something that she liked and I told her that she would have to wait and see what Santa brings.
She smiled knowingly and winked at me. (She found out the truth last year).
Thinking that Harley wasn’t even listening to all of this I got a huge shock when he suddenly blurted out:
” I know that Santa isn’t real Mum”.
“Not real?” I asked him still not wanting to reveal anything in case he was just bluffing me.
“Yeah” he said nodding.
I then noticed the look that he gets on his face right before he launches into a monologue.
“Why do you say that?” I ventured…..
“Because Mum, remember when I asked you if the Blackbird could fly me to England in 2 hours and you said that is takes nearly a whole day to fly there”?
(I vaguely recalled a conversation like this!)
“Well” he continues, “If the fastest fighter jet in the whole wide world can’t even get to England that fast, how would the reindeer on Santa’s sleigh get around the world in only one night?”
“Ummm, I don’t know mate what do YOU think?” I said
“Nope, he’s definitely not real”.
“Well Harley, if you don’t believe you don’t receive” I told him.
“What does that mean?” he said.
“It means that you have to pretend to believe in him so you still get presents” whispered Ella behind her hand
“Oh, then I believe in Santa then” said Harley!
We all laughed and then a few minutes later after the conversation had shifted onto another subject, Harley pipes up with:
“Ok, So who leaves all the presents and eats the cake and milk we leave “santa”?
“Ah, the magic of Christmas my boy, the magic of Christmas” said Mr Patient knowingly
*******
Addendum……..As Christians, it has long been debated whether or not Santa should be part of the Christmas experience for children.
Here’s our take – My kids know that Jesus’ birth is the real reason Christmas is celebrated and we don’t see why all the fun should be removed from children’s lives because of some silly religious legalism.
I personally don’t think it’s any different than telling them the fairy tale of Cinderella or Hansel and Gretel.
It’s make believe and children are blessed with the most amazing imaginations……
It’s all a bit of fun. And to anyone that wants to argue the point with me, I always remind them that St Nicholas was a real person once upon a time……
This morning, Harley went through the everyday ritual of asking me to tuck his shirt in and tie the drawstring on his shorts really tight.
So I obliged but commented that I thought that they were too tight.
He shook his head no and told me that he needs them like that. I shrugged and reminded myself that yesterdays issue was the ribbing on his socks so it really wasn’t that big of a deal.
I went back into the kitchen to finish making their lunches and then set to making sure all their books were ready for them to pack and not long after, I heard a small whimper coming from the bathroom.
I went to investigate (And at this stage, I still couldn’t actually tell which child it was).
It was Harley and it turns out I was right.
Harley needed to go to the toilet and he couldn’t get his shorts untied.
When I walked in he was sitting on the toilet floor whimpering and begging me to untie them for him.
Somehow they had tightened into a double knot and neither of us could get them off.
He looked up at me with big tears welling in his eyes and anxiety etched all across his face and I decided then and there that there was no way that I was going to make this child go to school today.
I got some scissors and cut his drawstring and asked him if he’d rather stay home with Mummy today.
He nodded yes and wiped away one of the tears that had managed to escape.
So there we were….both sitting cross-legged on the toilet floor only centimetres away from the toilet and I was hugging my little boy who had absolutely reached the end of his rope.
He snuggled into me and said between sobs “Thank you Mummy , you always know what I need”.
Then it was my turn to wipe away my tears.
There was no manipulation on his part at all. He wasn’t trying to get me to give in to him. He wasn’t attempting to get out of school.
He was just trying to cope in a world that confuses him and misunderstands him so often. And in me, his Mum, he saw someone that was on his side.
In Australia, our children go to school all year round.
The longest break they get is at Christmas time which is about 6 weeks give or take a few days.
Our school year starts in late January and goes right up until just before Christmas.
Children all over Australia both NT and ASD as well as the parents and teachers have mostly all gotten to the point of wanting out by about now.
We’ve all reached our limits.
That point where we’ve all had enough.
The point where we are sick of the hassles associated with school and are desperately craving a holiday.
Harley only has 4 weeks left of grade 1 and then the break he’s longing for.
***
I had to go to the shops for a few groceries today and I took both of the boys with me.
I had one boy each standing on either side of the trolley (cart) and they were doing that crazy thing where they would squeeze either side of their nostrils while holding their breath making their nostrils stick together and they were in absolute fits of giggles!
They made me laugh and then Harley asked me to have a go.
So I joined in much to the amusement of the other shoppers!
And as we were walking to the car park, I jumped on the front of the trolley and rode it down the ramp while the 3 of us laughed our heads off and I realised something……
It’s SO much fun to muck around with your kids, they LOVE it when I come down to their level and just be silly occasionally.
I discovered that Fiona is well and truly back
Does anyone else know what I mean when I say that life has a way of kicking you up the backside when you least expect it to!
Well, for me that’s a very true statement.
I admit that I have struggled to be positive and thankful the last couple of days and stress really took a nasty grip on me.
For some reason, I really let the events surrounding the kids party we attended on Sunday eat away at me.
And that’s why I chose not to write a blog yesterday. I was unable to write anything that didn’t reek of bitterness, anger and disappointment.
I woke up Monday morning with next-to-no voice, a face full of blind pimples, a throbbing head and felt extremely drained and lethargic.
I was convinced that I was coming down with something and wanted to stay in bed and pull the sheets over my head and shut out the world.
Then I had an email from my Mum telling me at least three pieces of what I consider to be really sad news from people that we know.
Three families dealing with hardships.
Three completely unrelated events.
Three reasons for anxiety.
Three people directly affected and several others by association.
It really made me stop and think.
Suddenly I felt ashamed for being so self absorbed and for keeping my head so firmly in my own issues that I was momentarily unable to see past that into the big bad world where everyone else seems to live.
I made a flippant statement today on a forum that I’m a part of that I was “retreating into my own autism bubble”.
I really ONLY meant that I was avoiding contact with stupid people and from having to explain my kids to people but I think it was taken the wrong way!
I was inferring that by sticking to “safe” people, that I could avoid anything uncomfortable.
Another wonderful mum on there pointed out to me that if we all lived in a big autism bubble that there’s so much more that us and our kids would miss out on.
She’s absolutely right.
And you know what else?…..Life continues to go on around me whether I insulate myself or not!
Yes, my family certainly DOES have to deal with a whole bucket load of issues….most of them a result of or connected to autism but so does every.single.other.human in this big bad world.
I needed that wake up call.
I needed to get my priorities back on track.
If I let myself get too caught up in feeling sorry for myself or my situation, I run the risk of allowing stress and tension to rob me of my strength, my joy and my ability to be the mother that my children need.
Isn’t it sad that it took other people’s trials to give me the kick up the backside that I needed!
Now, about that bubble……. POP!!
Harley went to a birthday party at McDonald’s today.
My better judgement told me that it wasn’t a good idea to go when he first received the invitation but I so badly wanted to be just like “all the other Mum’s”.
I can’t believe what a fool I was.
I came home a couple of hours ago and fell straight into Mr Patient’s arms and burst into tears.
I sobbed and sniffed my way through the ugly cry and he just sat there stroking my hair and saying “shhh”…”shhh”..
He was wonderful. His lack of words was just what I needed because it was such a hard day for me.
All I could see was Harley struggling to be like everybody else, I could see the other kids running around and playing tag and and I could almost feel Harley’s fear as he tried so desperately to fit in.
His fear was almost tangible.
I watched him sit quietly on a bench as the other kids played games and saw him chewing his hands which is a very clear indication of stress and anxiety to me.
I listened to all the other mothers talk about everything and nothing and my heart was torn apart as I heard them complaining about the little annoying things that their kids do.
I secretly wished that we ONLY had those small things to deal with.
I tried to join in the conversations.
One mother asked me what aspergers is and with a renewed sense of hope I started to explain it to her but stopped abruptly when her eyes glazed over and she started laughing at another conversation between 2 other mothers and it was apparent that she was just being polite.
There was a discussion on birth stories and one of the louder women started telling us all how she is a carrier of a gene that causes birth defects in boys.
She then said that while she was pregnant both times with her girls, she had tests to determine the sex of the child so she could abort if they were boys so that she didn’t have to deal with the drama of raising special needs kids.
I couldn’t even comment.
I had to walk away.
I wouldn’t have been able to find the right words if I had tried to say something.
Even now hours later- an appropriate response to that attrocious statement still evades me.
I honestly believe that God never gave her special needs kids because He loves all little children and it takes a special parent to raise special kids.
She clearly is not one of them.
After a while I was able to sit down and talk with Mr Patient about today without weeping.
He told me that when he first met me and for the first few years of our marriage – I was the most giving and selfless person that he knew and that slowly he has watched me get eaten up more and more by the extra needs that our kids have and how I seem to be losing who I am.
And he’s right.
He said that back then – I would have easily have been able to either put the woman in her place, or simply just let her stupid and thoughtless comment slide.
But that now he’s noticed that I don’t have the time or brain space for dealing with comments like this woman’s because I’m outright exhausted and emotionally drained.
He said he hates seeing me like this.
I think I’ll give birthday parties a miss for a while.
They’re way too hard.
For all of us.
Aspergers is often referred to as the silent or invisible disorder due to the fact that it’s near impossible to tell that there is anything different about aspies by merely looking at them.
Another reason is that because aspergers is pretty much “High Functioning Autism” (HFA) – (and I don’t want to get into an argument about the semantics of that right now)) – these individuals function at a level where they have often learned how to appear to fit in thus making their difficulties “silent”.
I had a friend ask me recently if Harley was really all that high on the spectrum or whether he was getting better.
(Yes…..I know, I deliberately didn’t go there for all of you who are wondering how I handled the “getting better” bit!)
But I knew what she meant. She was basically letting me know that from what she saw on a day to day basis was a little boy who had the occasional outburst and some little quirks that needed tweaking but nothing major.
And I totally understand why she would think that – he is so high functioning that he has learned how to be what society expects of him most of the time.
It’s when he’s home again that the curtains come down and it’s on for young and old. It must be SO exhausting for him to keep it together for so long at school.
SO , I wanted to write a little about what I know about children with ASDs and communication. Who knows? I may show this to my friend sometime!
Basically, my understanding is that in communication “social” comprehension is what they struggles with the most.
Because humans don’t just use words to communicate. We also use body language, facial expressions, actions, and we sometimes also imply things without actually saying them.
Think about when your kids were babies……even babies communicate before they can speak. They cry when they are hungry, dirty, scared, tired, bored or uncomfortable….so a lot of human communication is non-verbal.
Communication often involves speech but it does NOT depend on it.
Also, boys communicate a lot differently to girls. Boys use less words, they are less emotive and they tend to use more body language than verbal cues.
Girls usually say everything with words and supplement it with the odd facial expression, implied meaning or appropriate body language.
Communication requires both parties participating in the interaction.
A great example of this is years ago, a special needs teacher was teaching a class of non-verbal severely autistic children and she was called to the door when another teacher knocked.
After their brief conversation, they both turned around to notice that several of the students were making the sign for “help” but none of
them were looking at either of the teachers as they did this.
The teachers worked out then that these students were NOT actually communicating effectively because they didn’t comprehend that the sign language had to be directed at another person in order to communicate.
The good news is that Autism means that these children can still learn because it is not a degenerative or disintegrative disorder. It just means that they communicate and learn very differently to other children.
So back to aspergers……Harley is verbal but he still has difficulty communicating as there is SO much more to it than just simply 2 people talking.
Some ASD kids use echolalia (repeated phrases or sometimes entire sentences that they have heard elsewhere) and apply it it the current situation so it can appear that they are very knowledgeable and well spoken but the wheels fall off when they start using echolalia inappropriately or incorrectly.
Some children can pick up on one facial expression that they recognize and get a basic gist of the direction of the conversation and this can also cover up any difficulties that they may be having.
Other children become completely quiet and become shy so that they don’t have to reveal any of their communication difficulties to strangers.
My Harley often communicates through mis-behaviours like meltdowns, yelling, screaming, hitting, kicking etc because he is unable to find the words to get his point across. We have been working extensively on this with the various therapists that he sees.
ASD children have trouble processing communication because of their delayed processing time and this is especially noticeable in times of stress..
I know some ASD children who simply don’t see the point in communicating because the other person doesn’t share their interests.
Harley doesn’t understand the “un-spoken” rules of society at all.
He doesn’t “get” that you don’t tell people when they smell bad, or that you don’t tell people that you don’t like them and he has been in trouble at school before for “perceived non-compliance” because he has just walked away from a teacher thinking that the conversation was over when in fact, she was just taking a breath!
So I had to explain to her that just because he can talk…..it DOES NOT mean that he can “communicate”.
I’ve learned that I need to re-phrase a lot of what I say to him.
For example :
Instead of overwhelming him with words by saying:
“Your room is a disaster, you have toys everywhere, your bed needs to be made and honestly, you are such a messy child when are you going to do something about this”
I now say:
“Harley, Please make your bed”
And a few minutes later, I go back and say:
” Now, please put your toys in the toy box”
etc etc,
I am much more likely to achieve the desired result that way!
I’ve also had to learn to avoid sarcasm (that one was hard!) and to give him time to process and action the commands.
So in answer to my friend (who doesn’t read this blog anyway I don’t think!)
Yes……Harley definitely IS on the spectrum
Don’t tell me that ASD kids can’t do imaginative play.
Yes, I have spent hours TEACHING Harley to play through OT sessions and he uses a lot of repetitive scripts when he does play but this morning, he made up a game all by himself and there was only a small amount of scripting involved.
The rest was just his own imagination. (Yes, I’m all proud and weepy).
When I first I got up this morning, Mr Patient and Ella were playing the Wii. I think they were playing Snooker which doesn’t interest Harley so I wasn’t surprised to find him doing something else.
He was half-sitting / half-lying on the rug making Brmmm, Shhhh and explosion noises and I went over to investigate.
In one hand he had his stealth bomber and in the other hand was….. Buzz Lightyear!?
He also had a little Lego man with a backpack on hidden underneath the stealth bomber in his left hand.
Now….here is the game that he invented. 
If you look closely at this photo, you will see that the Lego man is wearing a regular back pack.
Harley maneuvered the stealth bomber so that it was doing loop-the-loops in the sky and making all the shooting and bombing noises as it dropped the missiles onto the semi-trailer below!
Then he got the Lego man and said “Time to eject” and raised him up in the air high before declaring “Oh-No!, This is not my parachute, this is just my backpack AHHHHHHHH” and then started hurtling him towards the ground.
THEN he put on his hero voice and announced “Never fear, Buzz is here” and Buzz swooped in and rescued the little Lego man and his backpack while the stealth bomber crashed to the ground in a huge explosion!
I applauded him and was filled with pride after witnessing such a brilliant display of pretend play!
Like I said….WHO says that ASD kids can’t do imaginative play!
