Monday, December 2, 2013

6 Autism things I don’t do no more

Life is the ultimate transformative experience. Over time you find yourself caring about different things .I am on Hopeful Parents today talking about 6 autism things, I dont do anymore. If you hate to click on links- the full post is below

6 years ago when R was first diagnosed, DH and I had endless passion about so many Autism things. I focused so much on a to-do list. If I could have looked ahead I think I would have focused also on a not-to- do list.

Here are 6 things that I used to do a lot and I don't anymore.

First, the Debates of Autism: 

I just don’t have the same energy around  Autism controversy like I used to. Case in point- when Susan White of Autism speaks did her dramatic speech (or was it PR release?) and Facebook caught fire –I was about to write a POV. But then.... my Surface keyboard was lying on the chair next to the bed. And.... I was too lazy to get out of bed. So I contended myself with just tapping on “like” on someone whose POV approximated mine. Please don’t be offended if you are passionate about the debates. The debates and the issues are important. Of course they are. But I no longer feel compelled to add my voice.

Second,  forcing you to be optimistic. 

I am super optimistic and work hard to be that way. But I realize that that is not everybody’s way. If venting helps you- vent away. If happiness feels irrelevant – so be it.

Third, thinking people with autism have the blueprint on my child:

Autistic adults provide a unique perspective – make us think of things that we would not have thought of. But I no longer think that an autistic adult knows more about my son than I do. Would an Indian stranger know more about me than my black BFF?I don’t think so!

Fourth,no more FOMO:

The other day, I had a chance to listen to Temple Grandin. Those of you who follow my blog know that I am a huge fan. But as I heard her speak – I felt like I had heard the every bit of the speech before. It’s like this with many trainings and books. It was useful in the early years. Not just for learning, but also my need to do something. I had a massive version of FOMO – fear of missing out. I felt that without doing a training etc. we would be missing out something crucial for R. But now mostly we seek less, do more.

Sixth, thinking I have the answers or can find them if I look hard enough :

 We have read so much, talked to so many specialists, mete so many parents and autistic people. Autism is still a mystery. The one thing I know, is that I don’t know. Now when newly diagnosed parents ask about things like DAN – I just say – “use good sense"

Finally, Autism and Identity:

 I think I am going to wait to see how R feels about his Autism without assuming that he will
a.     Be ashamed of it and want to hide it
b.     Think it’s a part of his identity or even be all about autism pride.
My hunch is that he will be matter-of-fact. Since DH and I are very matter-of-fact. I showed him my blog the other day and asked him if he felt okay about me writing about our family and he said he said was totally okay! The question, whether he is who he is, because of his autism or in spite of it is irrelevant


There are things I continue to care about and feel passionately towards regarding  autism, even after all these years and I will tell you about those in another post some day.


Barbara TherExtras said...

I could correctly be accused of over-estimating this, but will state my belief anyway & without searching for actual numbers, if they exist. The majority of parents with children with disabilities/diagnoses gradually or in their own time come to these same realizations. Many cannot express these same thoughts but I have seen it in how they live-out their lives with a child medically-marked.

Your whole family benefits from these do-no-more behaviors - importantly because you CHOSE to eliminate them from your life(style).

Do you think other parents have to live through similar experiences to yours (years, angst, fear, anger) before they are able to make the same choices you have?

With love.

Floortime Lite Mama said...

Dr Barb - I love your insightful comments - I feel the answer to your question is yes( that many parents will have to spend years and come to the realisation on their own)

Kris said...

I love this post. When Alex was first diagnosed, we did EVERYTHING. So much so that 5 years later we are still in debt. Did it help? Perhaps some of it did. I suspect much of it didn't do much besides keep him occupied, which may have been helpful in its own way. Now he has "graduated" from all of his therapies and I realize how much I exhausted myself (and most likely him as well).

I also agree that no one knows your child like you do: no autism expert or autistic adult or anyone else. I know Alex better than anyone.

Bright Side of Life said...

Yes, yes and yes. For me, it was all a process of coming to terms with my situation. I now see the cycle repeating itself with the new parents. All we can do is listen and support. Like you, when asked various questions about therapy etc, I say "listen to your gut instinct".

Sophie's Trains said...

I'm starting to turn :) Sophie is still little but we are a year on this train- research- meh (I've read it, and lost the fear of missing out, as you said). Who cares about the causes, really, if they ever find it. Therapy etc- I've realized that if it feels wrong, it probably is, if it seems to be kind and helpful it's probably right for us. Advocacy, etc- I did do lots of reading, participated in blog hops etc- and I think I am done too. I want to focus on myself- am I kind, am I tolerant, am I mindful? The people I have picked to follow, through blogs or on Facebook I think have the same philosophy. And no drama! This is a journey of growth and discovery, parenting and special-needs parenting especially.

Full Spectrum Mama said...

I think I have a little more processing time to go but your list is for sure something to which i will aspire! Love,

jazzygal said...

I like this post, I like it and the realisations you have come, to a lot. I agree with Barbara that most get to this stage eventually. But not all. I'm glad you're there.
I love your new look too!

xx Jazzy

BabyWeightMyFatAss said...

love and more love.
#3 bugs me the most. I am one of those that think if you can argue against a cure than well you yourself don't need one but what's to say that MY child doesn't deserve that.sigh.
I like Temple as well but when I read her mother's book I was disenchanted on it all. There's a difference from the hbo movie of her mother doing it all to her mother saying in her book she had a nanny/therapist just for temple etc.. ugh. It's hard.

This is our update:

Full Spectrum Mama said...

...started to really lose it last night re an article in the New York Times "Science" section last night that was talking about how "damaged" children with autism can be "helped" and then thought of your list and took a DEEEEEEEEEEP breath and...went to sleep! THANK YOU!

Floortime Lite Mama said...

@ Full spectrum mama – thank you so much for your kind comment just discovered your great blog as well
- @ Kris – I know exactly what you mean by the exhaustion !! Glad he is doing so very well though
@ Di – I totally get that feeling of déjà vu when I hear new parents speak – but I know all I can do is provide a sympathetic perspective
@ sophie’s trains I am totally with you on the no-drama and the causes of autism – really what diff does it make – There was an article going around on Facebook “How I gave my son autism” which was so ridiculous and I just rolled my eyes
@ jazzy – Thank you 
@ Baby wt my fat ass – I totally hear you !!#3 bugs me

Yuji said...

I am sure that this post resonates with a lot of us. I think that a lot of this has to do with coming to terms with our child's autism and finding some measure of acceptance.

Looking for Blue Sky said...

More wise words - I'm not in this place yet, but I think life will be better when I get there. Another post that needs to be shared xx

Tanya Savko said...

I am totally with you on all of these, especially the last one, after trying to turn Nigel into a self-advocate when he's really not that interested! A great post, K. Much love to you and yours.

Anonymous said...

It's Suzanne Wright of Autism Speaks, not Susan White.

Anonymous said...

It feels so nice to catch up! I have been thinking of you. Enjoy your time in India!! <3

Another random week in 2020

 Everything that I could say about 2020 has probably been said.  On the whole,  its not as bad as it could have been because I am with my tw...