7 yr old newly dx AS (sorry, long!)

iVillage Member
Registered: 08-20-2010
7 yr old newly dx AS (sorry, long!)
5
Mon, 08-23-2010 - 12:45am

OK, it was suggested I re-post where more people would see it and because I really need the support, here I am again :)

Rachel, single mom to

Ingrid
Kale
Daniel
Reagan

iVillage Member
Registered: 01-07-2008
Mon, 08-23-2010 - 5:53am

Hi, and welcome to the board.


I went through a lot of the things you are struggling with now, and I know a lot of other parents here probably did too. Asperger's is a bit of a strange one to deal with. It can take a long time to get a proper diagnosis and explanation because sometimes it just us trying to cope with a child who is not 'obviously' autistic but has a range of quirks/challenges/issues that, if you don't know about Asperger's can seem down to poor parenting or a range of other unhelpful things. The challenges our kids face are very very real, and the challenges we face as parents no less so.


In my experience the few years after the diagnosis, where we learned about Aspergers, learned how to understand and support our DS better, and learned how to navigate the complex 'system', were an extremely steep learning curve. But I do feel in a much better position to be able to be a good parent to my kid now I've done some of that learning (it never stops though, you carry on learning more than you ever thought you'd need to know about the condition, about your kid, and about schools and the law!!).


I know some parents do go through a grieving process (and mental health professionals all seem to have been taught to expect this) and feel the loss of a 'normal' child. Personally, I never did and it was spectacularly unhelpful to treat me like I did. My kid was my kid, I never grieved that he was different or mourned the loss of his 'normal' life because the life we were living *was* his 'normal' life. I may as well grieve for the fact that he has blue eyes and not green. I also never went through the 'what caused it/how could I have prevented it/done things differently' - out of curiosity, I did a lot of research about the causes, and there's some indicators (difficult birth, genetic component etc). But the crucial thing for me was some comforting words we got when we got the diagnosis - there is 'categorically no link whatsoever with parental behaviour'. In other words, *nothing* I was doing ('wrong' OR 'right') caused this: nothing I ate, or he ate, or the way I parented, or our personalities, or income, or toxins he was exposed to, or vaccinations we gave him, caused it. That was a tremendous relief.


It was a 'lightbulb' moment for us too: it was an explanation for how he was. It wasn't his fault, or ours. He was actually wired differently (look up Simon Baron-Cohen's website for some lovely MRI pictures of autistic brains, they really do 'work' differently), and he experienced the world differently. And so had to learn things differently, and I had to parent differently.


Like you, I have NT kids as well, and in some ways it was a bit difficult that he was the eldest. I didn't know any better and so I didn't understand why all the parenting advice I was getting on dealing with my challenging child wasn't working. I thought it was me. Then when I had 2 NT kids some things became glaringly obviously. Firstly, it wasn't me at all, because all of those 'tricks' worked like a dream on them, Secondly, the difference between Euan and his siblings became clearer and clearer at each stage and felt like slapping my forehead and saying 'HOW COULD WE NOT HAVE PICKED THIS UP EARLIER??!!' Oh well, hindsight is a wonderful thing!!


I think you will need to prepare yourself for a steep learning curve, and, unfortunately, that you will need to be an educator and advocate for people around you. Even the well-meaning ones will not 'get' it. I have lost count of the mystified teachers who couldn't understand how someone so 'bright' was hiding under the table at PE time. How someone so 'advanced' was in trouble for trying to strangle a boy. How a kid who knew more about the workings of the solar system than the science teacher could never EVER remember where his homework diary was.


The message for the future is mixed. On the one hand, your DS has a wonderful mix of skills, and he has YOU, and that combination means that he will, most likely, go on to make a success of his life, and lead a happy life. On the other hand, he WILL face SIGNIFICANT challenges and he WILL need a lot of support, particularly in his early years. Some things he will have to learn differently, and Asperger's will never 'go away' - he won't 'grow out of it', it will always be part of who he is.


You are a great mum. You are going to have to be an advocate for him and you are going to face some tough times. BUT you also have a great son. He is going to make you *soooo* proud, and in ways you won't quite expect. I think it's an honour and a priviledge to parent an Aspie, but it is also bloody BLOODY hard work sometimes. So welcome to the board and fellow EXTREMELY HARD WORKING parents.


We will 'get' anything you are going through.


Kirsty, mum to Euan (11, Aspergers Syndrome) Rohan (7, NT) and Maeve (4, NT)

"My definition of housework is to sweep the room with a glance"


"My definition of housework is to sweep the room with a glance"


Follow my blog on http://mumsnet.com/blogs/kirsteinr/


 

iVillage Member
Registered: 02-28-2008
Mon, 08-23-2010 - 1:01pm

Welcome to the board. I"m glad you found us.

Your feelings and thoughts are completely normal reactions to receiving an ASD dx. And your need for support is too. Sadly, the reactions from friends and family are all too common as well. Awareness is increasing but there is still a long way to go.

My own father, while he seems to accept the dx, still doesn't really understand what we are dealing with and how it impacts our lives. He's as supportive as he can be with his limited knowledge. I'm grateful that for the most part my family is at least neutral when it comes to the topic and that I don't have to deal with negative comments. It's tough enough being a parent without having to face criticism.

I understand your desire to act and get supports and therapies in place right away. Now that you have a dx, you are anxious to do something about it. Having a case manager is a good start, but finding good therapists is important too. Check with your local chapter of ASA for resources.

http://www.autism-society.org/site/PageServer

Local parents are a great source of information and support.

In the meantime, hang out here. Share, vent, comment, and generally make yourself at home. We're here and we understand.

Andrea, mom to

Graham
Miles
Anson

Andrea, mom to

Graham
Miles
Anson
iVillage Member
Registered: 10-03-2003
Mon, 08-23-2010 - 1:55pm

Welcome to the board Rachel and many hugs for all that you are going through and for being part of this "exclusive" club.

iVillage Member
Registered: 08-20-2010
Thu, 08-26-2010 - 8:09pm

Thank you so much for your reply!

Rachel, single mom to

Ingrid
Kale
Daniel
Reagan

iVillage Member
Registered: 08-20-2010
Thu, 08-26-2010 - 8:26pm

Thanks for the link!

Rachel, single mom to

Ingrid
Kale
Daniel
Reagan