Oh, so that’s my job now – My child’s “advocate” ?

advocats

Last week I heard it 3 times.

You are the best advocate for your child.

Am I ?

I wasn’t actually familiar with the expression until I heard it from a teacher last year. The same teacher who had just let Nemo live his first 3 weeks in grade1 rolling on the floor and hiding under tables – without telling me about it!
When I told her that I will now find a solution with the principal, she told me the advocate thing, so encouraging! Obviously seeing no fault in her behaviour  (she had told me she had ‘special needs training’ before – for what it’s worth..)

So over the last year what I found is that people say that a lot to me, and it seems to mean  “Yeah, you’ll actually have to figure this out yourself” .

Now, my closest friends know that I have been a lioness for my son in the past, literally removing him from a hostile pack in my savannah and leaving for very unknown territory. All by my own.
Brave –  because I had to be, to protect him.

But this advocate thing? Not sure.

Of course, I will love him, support him and supply for anything in the limits of our possibilities. But I find it frustrating and complicated to find out what it is that we have access to, what can be supplied and by whom. By law, or privately, locally, or nationwide.

Why is that so damn hard ?

Yes, I have been handed brochures, am reading relevant websites, and am now in touch with professionals in school, a paediatrician, a psy…

Still it seems that all impulses are coming from me, and from me alone. There is no one who sits down with a parent of a child newly diagnosed with autism and says : “First you do this, then you call there, and you also have rights to this, or try this..

It’s all over the place and people are not working together. You miss out and lose time. A lot.
Yes, I do want to be an advocate for my child.
But if I go to court for something serious, I will also not hire my bestie hoping that she will somehow pick up the complete legal system ‘as we go’ and get me through it.

I mean, maybe I am ungrateful. I was heard in school, got the diagnosis quick, some financial aide and have access to therapies. Sometimes, I feel I am very lucky with all that, here in Australia, in my corner of Queensland. It could be way worse.

But what if my English wasn’t so good, or – without being pretentious – I simply wasn’t smart or perseverant enough to deal with administration? What if I wasn’t a reader of blogs, for inspiration and relief, what if I was not able to put my foot down (a little) when necessary ?

Being your child’s advocate is serious business!
If you read this, you are probably in it as well. And all without any special training. Yay us.
 

***

Here is a more composed and equally as truthful post about advocacy for children with dyslexia. Just replace with the special need of your choice or in your life. 

Our daily Autism – Echolalia or “YES, You already said that!”

“Sometimes the young and beautiful nymph Echo would distract and amuse Zeus’ wife, Hera, with long and entertaining stories while Zeus took advantage of the moment to ravish the other mountain nymphs. When Hera discovered the trickery, she was so annoyed she punished the talkative Echo by taking away her voice, except in foolish repetition of another’s shouted words. Thus, all Echo could do was repeat the voice of another.”   {source}

aic-greek-roman-woman

Today for the first time, I looked up the origin of the word Echo. To say the least, this is only the beginning of troubles for young Miss Echo, but the curse of having to communicate with someone else’s words certainly is not a new concept in our house. Echolalia, anyone ?

For those unfamiliar with the term Echolalia, here is a good article explaining it. 

Echolalia comes in many forms but one obvious and honestly annoying expression of it is Nemo’s reaction to watching tv commercials with us.

If the ad has been on before and has spurred any sort of comment from me or my husband (well, sometimes you can’t help yourself : ads are so stupid/funny/sexist.. !) – we will hear it again. Echolalia never fails.

Of course, the ad will still be stupid/funny/sexist on tv the 2nd, 3rd or even 20th time, but the comment becomes somewhat redundant. Yes, we laughed, moaned or condemned it in the first place. And the ad hasn’t changed. But you don’t have to say it, right, again and again. It’s done.

Not for Nemo though and explaining this to him has absolutely no effect. Comment will be repeated, every time! The same comment, exactly.

Now some could say, just don’t comment on the ads if it bothers us so much to hear it repeated. But we like commenting on tv, it makes us laugh, talk and discuss things as they come up. So it will probably not change.

TV Echolalia is here to stay.

***

I just found another post about it, at “Just stimming”, she too looked into the greek mythology of Echo. Well is it a curse..?

Quote :  “Echolalia is metalanguage. (..)
Echolalia is what you use when language is too much. It’s just also what you use when it’s not enough.”  {http://juststimming.wordpress.com}

autism warrior mum : how I was right on the internet.

images (10)I have been around on the internets a little and I know better than to engage in flame wars on public blogs or forums. I really can’t be bothered fighting it out with a stranger. I don’t even mean mindless trolls, just people who are wrong. Chances are, they have more time and energy to go on forever, they will get rude and personal and are not interested in actual arguments.

But there are some topics that are close to my heart and I will make a statement or a comment. Domestic violence is one of them. Environmental issues. And autism.

Yesterday I watched this video from Greenpeace on youtube. Read the description. I think it is awesome.
Then I read the comments.

A mistake, of course, because you should NEVER read the comments on Youtube. Commenting on Youtube has become, for some reason, a sort of training ground for upcoming trolls. They are present in every thread under any video with their silly, obscene comments and personal attacks. (Any parent needs to be aware of that when they think
“oh, kiddo’s only watching funny videos” but that’s another topic.)

In the comments, while some people were shocked and others were actually discussing recycling schemes, some young guns were upset about the eco attack to their drink of choice (oh i drink the stuff too! but still..) or they were just being stupid, and someone posted something like this :

“ d’uh! video makers totally retarded, message not  clear.
are you autistic ?? “

This put me off a little to say the least.

So I replied to the comment. It’s true, I was patronizing. I asked the person if he was only little or a senior or maybe mentally disabled himself not to get it and why use the R word and autistic in this unrelated context and as insults?! Stop Coca-Cola trashing Australia - YouTube - Google Chrome 8052013 95911 PM.bmp

It went a bit back and forth. He wasn’t happy, accused me of insulting him and using disability and age in derogatory terms. I had not. Did I even have a point or was I a troll – did I just want any reaction?
I told him I didn’t care what he thought about the clip really (even if it was awesome). But I repeated my point about the derogatory use of the Rword and autistic in a public discussion. That was my point.

In the end I actually got this :

Sorry, maybe I should not have used the word “autistic” as an insult. That was going a bit too far.

Wow. People, seriously, this made my day.

I have seen many blogposts – here is a fresh one from autismum – about language and it’s mostly exasperated, angry posts. I was angry too. But for this brief moment, I am holding on to the thought that sometimes you can really make a difference and make someone see the light if you try.

Have you been RIGHT on the internet lately ?

probably a milestone in autism (self) acceptance here

piratebrainZ

Ol’ pirate brain is taking over..

I picked up Nemo the other day from school after “a good day” (according to him and the teacher). After some wild play with others in the bushland close to where we park the cars, we chatted in the car. VERY good day indeed.

We were already home in the garage when he told me that there actually was one “incident”. He told me :

“There was this boy and he was asking me if he could play with the frisbee with us, but it’s not my frisbee so he has to ask K. He kept asking ME so I yelled at him and he said he will tell on me for that.

So I explained to him about my Asperger’s.

I said my brain cannot do just a little exited or angry, it always goes big and loud, I cannot control it! It’s a problem in my brain, it’s my Asperger’s. Then he did not tell on me. It was ok.”

This means A LOT. I told Nemo I was SO PROUD of him. Not only had he actually managed to control himself after getting upset. But he also (am quite aware mostly so not to get into trouble, but still) EXPLAINED, in his words to the child why it happened ! I asked him if he said sorry at all and he said no. Fair enough. Nothing really happened, right. But this still is so BIG!!
(Awesome’s comment to this was also that it would have been a bit wuzzy from the boy to go tell for a yelling, but never mind.. )

One major problem lately has been that Nemo, well aware of his difference, was rejecting the long awaited help in class from the special needs teachers. He also had a few episodes of (minor) physical aggression with kids and was altogether not very receptive to the term Asperger’s. This could also be because one of our friend’s kid (his age) is on the spectrum but is very different and Nemo can’t really handle him as a friend (or only for a limited time). He refused to share the descriptive – “I am NOT like Noel!”

What happened there in school, the explaining of his condition (he told me he did this 2 other times before!)  is a MASSIVE step towards  finding a healthy, accepting attitude to his own condition and I am very VERY thankful he has shown the maturity – at 7 yo – to get there.

This was a very good day and it ended with a very good evening too – he even fell asleep much better than before. One little incident, big consequences.

The a.card or how not to make friends.

I am not ok. yeah, #fml !
Lots of stuff has happened already this year, health things, money things, no-job-for-me things, and I feel that it’s getting all a bit much.

I know it sounds whingey, but after soldiering on for well over a decade now, at the moment, I feel my life has simply a little bit too many obstacles to be an adventure. And I feel alone.

Yes, I know, the best remedy for some of my problems would be to MINGLE, make friends, get out.. but, unfortunately, that’s not that easy for me.

In my mother tongue, there is an expression for a situation where you are somewhat handicapped so you can only lose :

you have been handed the “arsehole card.”

three_acesThe origin isn’t quite clear, maybe soccer, maybe card games.. For really desperate cases, people will sometimes say : that’s a double a-card !
Well, let me present you :
my personal TRIPLE arsehole card pack!

1. I am foreign. That isn’t a problem as such, it makes for a good conversation starter. But expatriated twice now I have found confirmed what expats told me before and it was the same in the first country I lived. Here is how it goes : You meet new people. First it’s kind of exotic that you are foreign and they want to know lots of stuff. You tell. (Europe is very far and different for Australians). THEN people get used to you and get back to talking about other things. Now you need to find something concrete that you have in common with your new friends (parenthood alone doesn’t usually cut it), or you drop out of the gang. Because you cannot relate. You do not share the collective memories they have, you are not fond of those particular cookies, you don’t know that tv series!  You might throw in an anecdote about your stuff and your memories.. but their interest  only goes so far and in reality, now you create more distance. You might unintentionally criticize something they cherish since their childhood. You start to get those empty glances that mean “don’t know, don’t care”. Retreat.

2. I have been into hell and back.
Now without trying to sound dramatic, and certainly without giving any details, I had some VERY extreme life experiences in the past, in the context of and following domestic violence.
I have ‘survived’ ,as they say, long-term physical and mental abuse. I also have PTSD.
When we make friends (or try to) at first, we basically keep it a bit light and casual, and as I said under point 1. already that isn’t without difficulties for me.

But then, sometimes, I just can.not.small.talk.

I will make a “friend” one day, then see her again and, while she might be open for another chat or maybe even wants to have a coffee somewhere – my on-board mood regulator being instable as it is, I won’t be able to deal with it, and will back out, hide away, cancel.
Or I will just talk a LOT, and I mean TOO MUCH, so that I don’t have to really talk, if you know what i mean. Either way, I am not extremely good, or simply no company at all.

finally, 3. My child has autism.
Please don’t think that i am BLAMING my son – who obviously struggles with social interactions – for my own failure to connect with MY peers. But! I am desperately trying to get at least some loose friendships going with mothers of kids in his grade so that HE can also profit from it. Don’t all kids find friends in school ? Sadly, this just doesn’t work, as in addition to my own problems (a-cards 1 and 2) the kids aren’t overly keen to hang out with Nemo either. Oh, he has really progressed with peer integration during the last year and spends his lunch break with a group of boys he calls friends. I am thrilled about that. But there are still incidents on a daily basis. I have been exchanging mobile numbers like a needy teenager with some of the mums, and honestly, without much result.
No child is begging their mum to have my son over after school or for a sleepover. We do not get invited for birthdays or barbeques.
This is actually why I hurt most.

L’expert – c’est moi! You know best for your child.. but you don’t know everything.

When I first had thoughts that Nemo was on the autism spectrum, I turned to the internet for answers and support. I would google thoughts, questions or fragments of possible facts about different aspects of autism and then pick and read articles on blogs, forums, science health and psychology websites.. then links would lead me deeper into what I would call the jungle of autism information on the internet.

Because it’s a jungle and it has terrible predators.

I am not going to write (now) about the obvious dangers that are out there for parents who are desperately seeking for a ‘cure’, a method or simply answers in this confusing and sometimes heartbreaking journey that they have been ‘shanghaied’ onto through the birth of a child with autism.

It is no different from the quack people in our time and age will do with, for or to a cancer patient when all scientific and medical solutions have run out (sadly, sometimes even before that).
But today, two years after my first suspicions, one year after the AS diagnosis and with A LOT of internet reading, consulting, mingling and discarding on my back, there is something else that bothers me almost as much : The internal hick-hack of the autism (support) community.

First I noticed that there were parents that would post (vague) questions about this or that behaviour of their child on ASD pages on facebook or other forums. Some parent would reply by giving an insight in their own experiences, maybe some advice. Others would first ask for more detail. But the amount of people who would dish out judgement or give extreme directives to the parent in need is rather shocking. THEN there is the backlash of OTHER parents commenting back, sometimes adult autists with their own input. And back and forth.. Had I ever seeked advice on a page like this, I am certain I would have come out of it even more confused..

Now I have seen a couple of great blogs of parents that are true autism veterans and some will put lists of “things to say/not to say to an autism parent” or “10 things to know about a child with autism” and the like. These lists are the result of their long parcours of daily confrontations and frustrations and much of it is true, helpful and sometimes funny too. It would be great if the broad public moved towards a better understanding of how it is to live with autism and treat parents and children with more respect. Parents testimonies are important and must be heard.

But. Lately I have broadened my view and have started reading blogs from autistic adults. It’s been quite an eye opener. It’s true I have early discarded divers Aspie et all forums on the internet as to juvenile and ephemeral for my own taste. But some of the blogs I have come across are mind-blowingly intelligent, insightful and intense.
“Of course they are!” I hear you say. Well, take the time to really read the blogs. They are HARD to read and it’s also some very hard truths for us as parents.
It pains me when I read how many feel insulted by the way parents will impose their understanding of autism on people who have a first hand experience. From explaining to them what terms to use (autistic children vs children w autism debate) over tactless questions about pooping problems to simply telling them their sometimes combative attitude is just not helping the awareness movement. How can parents be so rude and ignorant?

Yes, times have changed and our children will most hopefully grow up more supported than those autistic children that are now adults and blogging. But we as parents need to learn how to communicate with each other to actually get support out of the exchange now possible via the internet. And we must also include those that are old enough to already have a voice.

These voices must be heard! They have much to say and we have still so much to learn.

The information and support we can access today online is a blessing. Everyone eventually finds their own balance between following the latest in science, day to day help, simple chat with other mums & dads and the some deeper exploration of certain aspects of the spectrum (or just parenting). I don’t say everyone needs to ‘study autism’ full time and yes, you alone are the first expert and advocate for your own child.
Your child that is different to any other child, spectrum or not.

louis14aftrigaud_1638-1715l

Louis XIV 

So listen to others. Ask questions that are relevant, comment always with respect and advise only with caution.

Sometimes being combatant, provocative and assertive can drive a movement forward. But there is a fine line between to being an obnoxious know-it-all who sucks the enthusiasm and willingness to share and support out of others who are pushed to the sidelines. Let’s ask ourselves daily if we are not crossing this line.
We are trying to improve the social skills of our children, we are demanding outsiders to adjust their view of autism.
I am hoping that with this common goal in mind we are not becoming a divided movement of too many camps, because it would be such a waste of energy and of an opportunity to really achieve some change for our kids.

Have you made negative experiences online with other parents or communities that you initially felt drawn to for support and information ?

Thankful Thursday / Letting go of parental envy

A post at AboutABugg made me think today.

Milestones of childhood development. Naplan.. Should a child with Asperger’s participate for the sake of inclusion, fairness or even to have an objective(?) assessment of your child’s academic level through these school tests?

I still haven’t made up my mind about it. We have a year to go before I have to, I guess..
But it made me think about my own competitiveness as a parent.

As a baby, Nemo started sitting at a normal age (is it 6 months?) and went on to crawling. For a quite a while. It always bugged me a little when parents boasted about their kids walking at 8 months and insistently asking me : “does he walk yet ? does he?!” I thought ‘geez, give it time, he certainly will. He’ll be a talker.’

When he was finally walking at 16 months, I still was relieved. Coincidently, he had delayed teeth and was chubby enough to pass as a giant baby (I am only 5’3). Strangers now complimented me on his early steps. Whatever!

Fast forward 6 years and my son is diagnosed Asperger’s, and I know there are certain things he will learn only with difficulty, later than others or never. It does hurt a little. Mostly for him.

But I have to work on myself not to be envious our ungracious with parents that praise their NT kids achievements, or worse, take them for granted. And I thought of my mum..

My mother was a complex creature to say the least, and there were things in her life that she longed for and things she missed out on that she regretted. But these things were always attainable goals or objects that she could have afforded, had she taken the right decisions, or had life not turned another way.
I have never seen or heard my mother envious of a professional position, personal possessions or a relations that were completely out of her reach.
Mum would throw her hands up and – not naively, but sincerely – admire the beautiful villas people had at the waterfront when we were taking a walk through the rich suburbs of my hometown. I would probably mutter something like ‘they got it easy’ or ‘.. should share their wealth!’ as the socially critical and righteous teen I was. And I would not enjoy the view at all.

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But the lesson I take from it today, is that I want to be able to enjoy watching other children progress and thrive in ways my son will never do, without comparing him or me to these families, because acceptance is the first step to being able to reach your own goals, your own milestones. At least some of them.

My son deserves this focus. And he will have his very own milestones and his own achievements. And we will praise him for it with all our heart.

I am thankful today to Renee to make me think about that and to my mother for her healthy attitude on other people’s riches.

So I am actually linking this as a Thankful Thursday, even if it’s just after midnight already…

Aspergerer – The search for the causes of Autism

causes puzzleI understand that people wonder and want to know.

After being a ‘rockstar’ toddler on the playground, my son – who used to get along with ANYONE – suddenly got into trouble through social awkwardness. He was ‘not fitting in’. He struggled to make any friends and it got complicated, to say the least. Of course I wondered if my parenting was to blame, my own difference as a foreigner. I am not exactly a people person, abuse ‘survivor’ and all.. So I do have a bit of baggage – was I passing it on ?

We moved on to prep when he was 5 and things got worse. I now wondered if the the fact that he had no real siblings closer to his age ( teenage step brother and sister were living with their mum) could have made my son too egocentric to function well with his peers. And maybe my own, sketchy set of rules at home had badly prepared him for the discipline in school?

When we encountered aggression and even more difficulties to mingle, I finally wondered if there was a possibility that he had purely and simply inherited the A..hole gene that could be present from the side of his birthfather’s (aka ‘the Mistake’)..
Yeah, even I know A..holes are complex beings and oh, they often have reasons (blahblah) but being not exposed to that type of behaviour, I had hoped, should have protected my child from becoming like that himself.. but, you know.. you STILL wonder! And genes work in mysterious ways..
But I have long completely discarded this possibility.

When I started looking more into behaviours of children on the spectrum, I felt, even before his official diagnosis, that things were making more sense. I was almost glad.

At this point, it is easy to get VERY distracted by reading/researching all these things on the internet that are – as science stands per today – NOT proven and completely irrelevant for dealing with the problems in your child’s daily life.

I have easily read 100 different theories about what *I* could have done to caus the autism of my child. Some I might actually have done with or without knowing. Environmental factors, food, drink, the vaccines.. well, you know the range is pretty wide.
Some of the causes are so obviously stupid and based on quacks and self-declared specialists, still, if you look, there will be a portion of people on the internet that follow this or that theory.

So instead of dealing with the NOW and the FUTURE of THEIR child, they get lost in the cause of XY and contribute to the cacophony of disinformation.
This is what makes it so difficult for anybody today to understand what we actually know about Autism FOR SURE, how we can help children and grownups with ASD and what research would actually be most beneficial in the fight not AGAINST Autism but for those of us who have a life WITH Autism.

Oh, I still wonder from time to time. I am back to thinking genetics play a big role (my father and my brother both qualify for what people usually call ‘autistic traits’ ) but I also have the advanced age birthfather, the temporary lack of oxygen at birth… So I still don’t know.

What I do know now, though, is that I don’t have to know.
Even without knowing exactly where his autism comes from, there is still an incredible volume of information out there and so many methods how to make our life with Autism work and allow my child to be happy. Finetuning what and how much should be done at home, at school and elsewhere, now and in the future, looks like a big enough task.

The causes of autism.. ? I’ll leave it to science to figure that out.

understanding asd and adhd : HYPERFOCUS vs perseveration

Most parents with children on the spectrum have exhausting experiences with their children’s latest ‘special interest’ aka ‘the obsession’.

I have lately come across the term hyperfocus on some of the more ‘young adult’ forums and was surprised that, contrary to the neutral definition (wiki) it’s described as a kind of controllable ‘tool’ for example when studying or in research. Say what?

The prefix “hyper-“, is normally used to describe something that is over the top, excessive… and not in a good way (that would be ‘super-‘).

So I think studying, or last-minute-tasks require simple ‘focus’ or concentration, maybe ‘flow’ if you like, but the confusion of the term inspired me to these :

WHAT IS HYPERFOCUS ?

1. A handy studying tool ?

_planning1

2. The incapacity stop doing what you’re doing when you should really be doing something else ?

gamer1

And while your ASD child’s hyperfocus might one day lead to the brilliant discovery of a formula worth the Nobel price, most times, it would pretty much be in the way of sensible social interactions and look more like this  :

3. Hyperfocus in our lives…

hypermarioEND2

(Yes, our Mariomania is still ON. And while some NT parents would think it’s a rather common obsession for a 7 yo boy, he is indeed taking this to a totally new levels..)

Aspergerer – Blackout in Queensland

I don’t like to sleep in a completely dark room, for several reasons, and neither does Nemo.

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There were times when I tried to help him feel secure with waking up in a dark room, but with the many other problems we have with even falling asleep, I have long given up on it. It’s no big deal really. We have gotten very low watt night lamps, for both him and me and no one stumbles or gets scared in the dark anymore.

On the day after the tornadoes whipped through regions North of us, we had strong winds here at the coast and on tv they were discussing flood levels. But our lights flickered.

Nemo was in bed, not asleep as usual, so I went to see him to make a blackout emergency plan. I did not want him to freak out and scream the house down. Waking up to his usual “night scares” is bad enough without actual darkness. For both, him and me.

Here is what we did and we will just leave it in place for the future.

On the headboard of his bed, we have a soft toy attached, a musical pullstring thingy we have since he was born. Onto this clown, I hung a strong little LED torch. I told  him to NOT PANIC, but reach for the torch and come and see me, in case I was asleep. We practiced with (not really) closed eyes and giggles.

Literally 5 min later the lights were off (and they would stay off for about 30 hours).

I had gone back to watch the news again, and it took only seconds after everything went out until Nemo shot out of his room and came running to us – clenching his torch.
My husband thought of a battery powered 25 light fairy light thing (they now retail for about $5) from christmas and put it in his room as a nightlight. They use so much less, now, with LED lamps, and will easily go all night, even more. All these gadget cheap torches we picked up left and right? Finally useful.

While darkness is usually an issue even to go to the toilet, we went through the whole blackout situation without any fears or anxiety crisis. I am SO glad this worked.

readerDo you have any measures in place for ‘emergencies’ that could be harder on your child with ASD than for other children?

I certainly will keep this up, and will change some of my own arrangements… Having mostly scented candles to illuminate the house is a bit heavy on the head and a radio without batteries is basically worthless. Happy to say, the blackout only cost me about $ 15 worth of sausages lost from the fridge and a bit of effort to entertain us all without electronic help.

(I know others were not and are not that lucky around us, all the best to them, obviously. )