ASD Self Harm Parenting A nightmare A rollercoaster A world of love.

19 Comments

ASD – Autistic Spectrum Disorder or Aspergers Syndrome. It’s all Autism now, apparently. There’s no cure for it, it’s a part of life. Many kids experience it and more parents and carers are challenged daily by it. Many have their own opinions about why some children have it and some don’t. There are specialist centres and experts, yet where were they when my ASD son took to self-harming? Oh that’s right, I remember, they were sitting back telling me what a naughty, attention seeking boy he was, that he should just “get over it” and “be like everybody else”.

Charlie Pickering has penned a perfect post about what makes news, and what doesn’t. Although Charlie focuses on the daily deaths and abuse of women, it emanates the clear message that unless a story can be sensationalised, it’s just not newsworthy. Have you noticed that we’re getting the same “stuff” day in day out. Charlie is right. Find out more about what Charlie says through the link on this blog on my website.
I’m a mum of an ASD son who turned 20 this month of April and a son who has just turned 10.
The last 20 years have been a roller-coaster of love, challenges, and a multitude of other “things” and just “stuff”.
Why have I decided to share my experiences? Probably because I’m a little tired, fed up, exasperated, annoyed and just plain cheesed off with “people” judging the decisions and the choices I’ve implemented as a mother raising an ASD son. These incidences are daily and continued yet, much like the deaths of women at the hands of violence in the home, it’s just not newsworthy.
The media might actually be able to “help” educate the greater community and reduce the incidences of ridicule and judgement of both ASD kids, and other special needs kids, and their parents and carers. Charlie Pickering penned:
“We need to focus on what’s going on at home more than what’s going on in the streets”.
So, where to begin?
Would I change anything I’ve done? No, I don’t think so. All parents make mistakes but it seems some are judged harsher than others and the repercussions of those judgements can be quite devastating. To make a mistake is to have opportunity to learn, grow and change.
Many parents and carers have traversed the at times dark, yet green valley’s of ASD, felt at times as though there was no light at the end of the ASD tunnel and simply sat and wondered how it all came to be.
I’m not alone, I’ve read stories and tales from shared by other carers and parents, stories are mostly shared on sites specifically for those of us who have personal experience and I don’t know why. Maybe because of fear of experiencing the vile tongues of people who really have no clue at all.
The “people” I refer to are those that have not raised an ASD child, nor have they walked in the shoes of an ASD carer or parent, nor do they know of what hides behind closed doors. How could they know? Have they walked in shoes even similar? They couldn’t possibly have, or they wouldn’t say or judge in the manner that they have and will likely continue to do so.
To this day I ponder of the rational people have had to publicly and directly vilify me as a mother and a person. Their abasements and their aspersions all served, in my mind, to do a number of things, to inflate their egos as experts, though none hold degrees or any sort of expertise in the area of ASD. Dare I say this, to deliberately hurt and intimidate both myself and my son. I really can only presume, but what other reason could there be that is valid?

The blame game is easy to play, specialists play it, strangers play it, friends play it, family play it.
Start with a link on my website at the end of this blog maybe, I shared that story because MMR vaccine is “blamed” for autism. Read some of the comments that go with it.

This story and more can be read on my website, they’re real, they’re true, they’re simply “how it is”. I’m shining a light onto some topics and issues that are rarely talked about yet need to be so we can better help each other and in turn help our kids.

Posted by MsJane, 26th April 2014

19 Comments

- - mom81879 said
  - 26 Sep 2015
    3:40 pm
Thank you for this, it is much needed, especially dealing with the blame game. I’m off to your website now for a read and to learn a bit more I hope. Thanks again

- - mom81879 said
  - 08 Sep 2015
    8:18 pm
Thank you for that. It’s an enlightening story. I’m sure they will help others out there

- - mom113055 said
  - 24 Jul 2015
    4:01 pm
wonderful

- - catgrrl3 said
  - 21 May 2014
    4:54 pm
thank you for providing the link

- - curlytops said
  - 29 Apr 2014
    6:20 pm
yes there is no link to the website
- MsJane replied
  
  16 May 2014 , 8:54 pm
  My sincere apologies for not replying sooner. I’ve been diverted to caring for my beloved 87yr old Grandma over these last weeks and feeling somewhat fatigued to say the least. The link is as follows
  http://www.friendsonfeet.com.au/blogs/
  You might have to copy and paste into the search bar.
  Thanks for reading. My submission to the Human Rights Commission will be emailed this weekend as I’m also working with a great lady who is a part of one one Australia’s leading help groups for young people.
  - mom94125 replied
    
    08 Jun 2015 , 4:33 pm
    
    thanks for posting that link. i am glad that i checked on this
- - hopefullyheidi said
  - 28 Apr 2014
    8:29 pm
I’m sorry if I sound silly but I was interested in reading some things on your website and can’t seem to see the link?
- MsJane replied
  
  16 May 2014 , 8:57 pm
  My apologies to you too I have posted a reply with a link to the blog posts above (or maybe it will appear below once I hit the submit button ) Thank you for reading. J.
- - mel1 said
  - 27 Apr 2014
    3:14 pm
Hopefully there is growing understanding and awareness in the community. There are lots of conditions of differing degrees out there, not everyone is born the same. Education is the key to people understanding and accepting of all these conditions. We all need to try understand each other first, rather than judge. People try their best, and a friendly ear can go along way to helping people cope.
- MsJane replied
  
  16 May 2014 , 8:59 pm
  Hi Mel, you’re so right and it’s what was missing for me…that ear that actually listened. With a bit of luck my submission to the Australian Human Rights Commission as a part of their investigation into Self Harm and Suicide Prevention will help bring more awareness as I write as a mum and not an academic or an organisation. I hope they listen.
- - arcticwynta said
  - 27 Apr 2014
    1:53 pm
People always judge what they don’t understand or even try to and I have found this to be even true with teachers. My Son was born with a hearing problem and I had many run in with school and teachers as like I would say to them just because you can not see his disability does not make it go away. We my son and I have have hearing loss that can go to completely deaf to back to our normal which is still a large hearing loss and I tried to tell people my son is loud due to hearing loss we are either loud or to soft and when you can not hear sooner or later you stop asking what they have said as you always cop their frustration with you. So as my son did he amused himself he was suspended for talking in class when I asked the teacher if others where I got but he was the one we heard oh that’s right he’s loud they also kept telling me to have him checked for ADHD which he does not have all his problems come with his hearing. Frustration anger loudness ect. I have also seen people and defended one of my Grandson’s the oldest whom is now 11 as he has Aspergers and people just do not understand at all. You get or at least I do get annoyed at people and their attitudes and opinions on the kids
- MsJane replied
  
  16 May 2014 , 9:06 pm
  Thank you for sharing your story with me and others. I have to believe that understanding will eventually happen. Schools are a nightmare, well from my experience and obviously yours too. Awareness and Understanding is a part of why I’m doing what I’m doing as a mum and volunteering my time to see change happen, not just for young people with mental health deterioration but any other challenge that requires some understanding on a higher level by teachers, professionals and the like… one step at a time… things have to change
- - hopefullyheidi said
  - 27 Apr 2014
    1:07 pm
I have seen how hard it is for my friends who have an ASD little girl. They are fantastic with her. My own son has ADHD and his father refuses to accept the diagnosis. I watched as he was diagnosed by an expert and even I knew what the result was going to be. I like you am sick of people chiming in with their misinformed opinions. When you have a child with a disorder you yourself do so much reading and viewing on the disorder probably than some of the experts. It makes me cross when educational institutions try and deal
With behaviour in the wrong fashion, thinking one approach fits all. My specialist dr gave me a printout on how to better manage ADHD in the learning environment especially written for teachers. I explained to his teacher I didn’t want to overshadow her position as a teacher but my dr had asked me to give this to her. She was quite happy and had already been using some of these approaches. We are very fortunate to have this wonderful, understanding teacher.
- MsJane replied
  
  16 May 2014 , 9:10 pm
  Stay with me Heidi, I need all the support I can muster from as many people who will listen. Have a read of my comment above. The Human Rights Commission is in my sights as a place to listen hopefully. I made a pledge on Change Day, I will see it through for all of us who are tired of current treatments and judgements. I’m on all the usual social media channels my website has all the links to me Thank you for your sharing and your support
- - aussiemum said
  - 27 Apr 2014
    10:58 am
Well done Jane. Unfortunately women tend to feel justified in passing judgment on other mothers whatever the situation (PLEASE STOP IT LADIES), but I find that mothers with extra challenges are judged more than most. I have a good friend who is raising two severely disabled boys (deaf & blind) and the judgement she gets from people (including the within the health industry who are supposed to be supportive) is atrocious. I wish you the best of luck.
- MsJane replied
  
  16 May 2014 , 9:15 pm
  I wish I could post one big post to all you ladies… Your support means the world to me it really honestly does. I was really nervous posting this story but with what I’m doing, I can’t afford to be nervous, I have to do it for all of us who are judged because people just don’t understand. I’ll be posting my submission to the Human Rights Commission as a new blog once I’ve sent it. Stay in touch with me and please share as much of my “few” blog stories as you can. We might just help one person feel better knowing they can call, talk, catch up with and simply be understood by someone who has actually “been there done that” and knows what it is really like, most professionals have no clue what it’s like because they’ve NEVER lived it.
  You ladies have made my week.
  THANK YOU!!!!!
- - amandaks said
  - 26 Apr 2014
    8:47 pm
I really feel for you and what you and your family have been through. Unfortunately I think it’s one of those things that will always be judged by people who don’t understand and who don’t have the willingness to learn about these sorts of issues. We can hope though that as new research and discoveries happen, the more autism will be publicised and taught to the general public, which hopefully, will eventually make people more understanding and less judgemental. The more awareness, the better – as it is for everything.
- MsJane replied
  
  16 May 2014 , 9:17 pm
  Hi Amanda,
  Read my post on AussiMum’s comment, it’s for you too and all the other ladies here
  THANK YOU!