Saturday, June 5, 2010

Aspergers, Aspergers, Aspergers

Seems to be the running hot topic in todays blog list. Yes, I know I follow a lot of ASD Mummy Bloggers and so these posts are to be expected, but usually they are not simultaneous. These are blogs about many things, and of course our kids figure largely, but it is rare that so many post about the Autism Spectrum at the same time.

One intrigued me with the title:
The ‘impact’ of Asperger’s on my family life Like a Dump Truck is a regular read of mine. I find she writes as I think, and thus I always enjoy the posts and the points. This entry was no different, prompted me thinking what would I say to such a question as this mother was asked:
"I was recently asked “what has your son’s Asperger’s taken away from your life?”

My reaction would have been very close to what LADT posted, but like everything, time changes your impressions and answers. But the end result would be the same. Her  answer:
No, his Asperger’s has not taken anything away from me. Instead, it has given me more love and understanding than I ever thought possible. Exactly. Whilst it means a lot of things are different to what others experience, so are the rewards greater.

Another friend (and yes, she is just that) was struggling with what, where, how much to reveal on the blogosphere circuit about her family struggles and battles with ASD. As usual, my blunt response provoked a *ahem* strong reaction. But she has bravely decided to lower the guardrails and allow others to see just how hard it really is in the early years. I won't post a link here, as I am unsure how much public interaction she wants at this point, but I truly believe when we post about our lives it helps others AND it also will show our kids just how far they have come, and how proud they should be of themselves as they grow.

And that brings me to us. We have (obviously) had some very challenging times as a family, totally autonomous to the ASD aspects. But on the Aspie front we have certainly had some swings and roundabouts, both victories and setbacks.
  • Boy 1 deciding on flight to funeral that HE does not cope with flying, and has panic/stress attack on landing (not a loud one, but I do think the arms of his seat will still have the marks of his fingers embedded in them, and the sweat poured off him). This meant the return flight was not good either, and we will not be flying again for a while.
  • School meeting a month or so back. Was decided to implement an adjusted expectation/curriculum to allow us to set a 45 minute planned study time with no penalties if work not finished. Worked well, but on our return stress/anxiety returned for a few days.
  • Appointment with paediatric psychologist made to talk about anti-anxiety medication. None available till August.
  • Most of the time Boy 1 is COMPLETING all homework and assignment expectations in the 45 minute slot. Now pressure is off he knows he has to sit and work constantly for that time only. And so without the panic/meltdowns his work ethic is fantastic and the brain is no longer crippled by pain. Big win!
  • Increased fish oil capsules (Efalex) to 8 a day. Made big difference in concentration/attitude at school. Teachers have been really vocal about how impressed they are with him the last week or so.
  • Psychologist is in same clinic as the proposed psychiatrist. Back from hols, spoke to me at appointment for Boy 2 last week. Was lovely and assured me that whilst it is going to be hard yards in the next few years, he truly believes Boy 1 will come out the other side as a happy, successful adult. That he sees hundreds of boys and the ones like Boy 1 are the success stories. Nearly cried in relief.
And so life goes on.
And to my fellow ASD bloggers, hang in there. We are a bit further down the path than some, and when I read your blogs I am reminded of how hard it is at all stages, and how hopeless it can seem. And with the wealth of hindsight I want to reach out and hug you, but I also know a hug is not always what is needed. And so if I come across as blunt, it is not to hurt, but merely to nudge you out of the fog, as I know I really needed that at times myself.

Just as I appreciate those who are further down the track coming in and giving me a shake when I am wallowing in self despair. Because the truth is these kids are bloody amazing, and we need never to forget it.


Lulu said...

Fish Oil? Really, coolness. I get so much from the further-down-the-track ASD bloggers. In fact I've had far better advice from ASD net mummies that alot of professionals.

xoxoxoxoxo Thank you.

Jen said...

I don't mind if you share the link, thanks to your wake up comment (and it wasn't that bad, it just shocked me out of hiding my life and that's a good thing essentially :) ) I'm open to sharing it now and am glad I did as the comments have helped to make me feel less isolated.

Boy1 I'd truly amazing MM, no doubt with your family love and focus guiding him he will be an exceptional man :) . I will go check out the other ASD blog link now. :)

Madmother said...

Jen, there are times I feel old, jaded and a whinger about the things we face, and then there are times I feel truly ignorant and helpless. If I can help one person NOT feel that way then the good outweighs the bad.

Lulu - has made a world of difference with Boy 1. He has been on the 6 capsules for the last 4 years.

Lulu said...

Jen can I have the link ploise?

MM, I bought some fish oil last week (dunno why, just did) and the damn ad said "no fishy aftertaste" oh BOLLOCKS. I could smell it across the room and Cyclone won't have any of it so $25 wasted.

Yeah, I get the days of "up yours to the world" but I drag myself to the PC so I can read the other mummies like me and know I'm not the only one.

But JEEEZE we are so cool. I have loved other bloggers before i realised we had other things on common. Like being awesome in our own right (or lunchbox - whatever).


Kakka said...

I can also offer the hope that as adults some ASD children function well most of the time. But I can also tell you that as a parent, you will always worry - mind you I worry about all 4 of mine so maybe that is just part of being a parent. xxx