Sunday, February 27, 2011

The joys of the unfast lane

Entering this post Jen's fabulous Blog Gems


This fortnight's theme is Happiness 


My favorite topic .. I am looking forward to reading all the other posts


Here is a post from  4 October 2009

We are having lunch with Nancy Kaufman - 6 other mums and me.

We are going around the table introducing ourselves and talking about our child and their special needs.( all the kids have apraxia only- and to me what sounds like really mild Apraxia - except for R  )

One mum is asking anxiously "he just cannot say the " R" sound .... will he always be this way.. will he sound like he is baby talking into his teenage years" ( her kid is 4 )

Another mum talks about how her kid speaks in whispers

Another talks about how she is so worried about her youngest because her other two are "just perfect and have no problems at all"

They all look so anxious and worried about things that to me seem simple.

Clearly with just apraxia and these dedicated mothers, they will do just fine

When my turn comes I say

 " R has autism and apraxia ...he could not speak at all till he was 4 .. because he did not know that words meant things.. auties think in pictures .. now he is slowly teaching himself to talk through reading .. but the apraxia is giving him problems .. his apraxia is really bad .. but he is an awesome little guy .. so bright and hardworking. We feel sure he will overcome it. "

The other mums look taken aback at my breezy mention of autism and apraxia

The speaker pats my arm and says " I just love your attitude"

Sometimes I really do wonder if I am delusional.

Is my fools paradise going to come crashing around me one day? - I am thinking  in the car  on our way back from the conference

I turn around and smile at R . He smiles back !

I am bedazzled . Every time he does this- joy floods through me in a great wave.

For this is not just any old smile.

This is hard earned Reciprocity!

A smile in exchange for a smile

I dont think I can ever not be enthralled by a reciprocal smile  from R, no matter how many times it happens

How grateful I am for each little step R takes.

Later that night as I am putting lotion on his little feet he point to his stuffed toy and says "Tasha" ( for that is her name )

I hold up Tasha and say ( in Tasha's voice ) "Hi "

R whispers back "Hi"

Pretend play interaction!
This small thing that any 18 month old could do - moves me to tears and I run down to tell DH whose grin lights up his wonderful face.

Is it possible that I am happier in life after autism than in life before autism ?

 I would never wish regressive  Autism on any body.
For a regression is the most terrifying thing I have ever been through.
Even though R's  Autism has brought with it ability as well as disability, the memory of his regression can still make my stomach tight!

But through this -  life has forced me to take the scenic route

One of my close friends says,  thoughts like these are all coping mechanisms - rationalizations

She is probably right - I think as I am snuggling into my bed

My bed and my home and my kitchen -made all the more dear to me by not having them yesterday as we stayed at a hotel for the conference.

For one of the strange things in life is that to truly value something - you seem to need to spend some time without it

In that same way - I am enjoying being R's mum - in a whole new and wonderful way in LAA ( Life after Autism ) - with eyes that are grateful for everything

And coping mechanism or not - life is simply wonderful seen through these grateful eyes

24 comments:

Lyndsey said...

I adored this post! I know exactly what you mean. C started spinning L in the computer chair the other day all on her own, and I ran to get M and show him what she was doing. I was so proud. I really believe I am a happier person since autism. Yes, it is VERY hard at times and I'm so frustrated by the fact that C is still not potty trained and after 3 years of therapy still struggles to get one word out sometimes, and L doesn't try to say anything at all, but I have become a better person for it. And I know that. I have accomplished more in the last 3 years than I have in the whole of the decade before, and it makes me happy.:)

lonestar said...

Beautiful post! I can relate to those thoughts of wondering if I'm delusional, but I can also relate to the pure joy that comes from the simplest accomplishments. :)

Kara said...

You are not delusional. You are enlightened, courtesy of a brilliant little boy.

Bonsky said...

Seeing the glass as half full rather than half empty regardless of the situation clears the path to happiness. With only one exception that I can think of, I am always looking for the silver lining or "the bright side of life" even in what seems like the dark moments. Perhaps that is why I adore reading your posts so much. They are always filled with positive energy and celebration of what is good and what you have rather than focusing on what you don't have. It always brings a smile to my heart. Glad your conference was well worth the trip.

TJ said...

As I read the line about the joy and love that flooded your being as R smiled back to you, the same emotions filled me up. Not only because I know the feeling so well with my JC, but because I can just *see* you and R.

I am delusional right along with you (except perhaps in dealing with school issues on ocassion ;), and it is what I am most proud of.

robin said...

Enlightening...I didn't realize that auties think in pictures.

You're definitely NOT delusional...you're the best mom in the world!

Chuck said...

There is an old saying that says that belief can move mountains. Neither fatuous, nor delusional, nor a bright Polyannish smile, but the accomplishment of actual change itself. Your words continue to impress upon me the wisdom and truth in that saying as I see it worked out in your lives through these posts. Never give this faith up.

Chuck

kyra said...

aw, man! it's not a coping mechanism!!! it's an attitude, a way of seeing, a perspective, a direction to point one's eyes, one's heart, one's soul.

and you got it and it's wonderful!

Julie said...

"life has forced me to take the scenic route"

I love that! I related to so much in this post. I also love your attitude. I have always believed that positivity and optimism are the fuel of progress. Your joy and your view of things will make it possible for R to go far. =)

Sande said...

For so many, their children are an extension of themselves. Any 'nomily' is a blur they wear themselves. Their children's behavior is a direct reflection on them, as is their culturally measured intellect and appearance. Most choose to have children to satisfy their own needs, to have for themselves therefore they have expectations with that.

To mother and enjoy our children for who they are, as individuals made by Him in His image for His pleasure is a freedom beyond all freedoms. Sounds like you are wallowing in that liberty which just confuses the mom with a criteria.

goodfountain said...

Not delusional at all! It's a way of life, of living.

To me, there is no other option.

What an outstanding post! (And attitude!!)

rhemashope said...

Amen sister!!!

Elizabeth said...

I don't think it's delusional, but I do think our kids give us choices that we might not have had before, or taken in quite the same way before.

Lovely story --

Apples and Autobots said...

Oh, I love this post, and I think you are absolutely correct. The challenges of autism open us up to life's little joys that often go unnoticed. I'm over from Blog Gems.

Rachel Cohen-Rottenberg said...

Really gorgeous post, K.

Your outlook is not a coping mechanism. It is the spiritual outlook of someone who has awakened to life.

kathleen said...

Wonderful post..wonderful boy. Well said. :)

Danette said...

I certainly don't think of this as a coping mechanism. I think you are a person, who through your experiences with your son, truly knows what life is all about. Continue to cherish these moments--the world needs more people like you!

Looking for Blue Sky said...

Lovely post. You really seem to have embraced your new life, whereas I still chafe at life in the slow lane, even after 14 years x

Anonymous said...

What an amazing piece you wrote. I can so relate. I live for the simplest accomplishments. Because for me the are HUGH milestone and major accomplishments. Thank you so much for writing this..

Liz Coyne said...

Lovely musings, lovely post

Donna Aumann Cooper said...

I love this post. I can tell our heart beats the same rhythm! We must get together and share.

I can't wait to read your entire blog.

(((((((())))))) to you and r!

AllieF said...

You are definitely not delusional! I do hope your attitude can be contagious if I continue reading. I do know what you mean about being thrilled by the smiles & other such things that many parents take for granted at a much earlier stage in life..

Also - I just saw your note about not being able to leave comments on my post. If you can try again sometime I think I fixed it & would love to hear from you. Thanks!

JenRN said...

Thank you so much for putting that into words so beautifully. This morning I came home from work (night shift RN), puckered my lips to my little boy, and he made direct eye contact with ME, smiled at ME, kissed ME, and said "love mommy". Unspeakable Joy! All things that the mother of a "normal" 4 year old would accept without even a thought, a million times more valuable in the heart of one who was once filled with the terror that these things may NEVER happen. That is reality, my friend, not delusion.

K- floortime lite mama said...

Thank you so much for these lovely and kind comments

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia