Join the Community

Follow Along

Never Miss a thing...

Enter your email address to be updated with new posts:

Delivered by FeedBurner

Honour the Child

Blog Archive

BTRT Patterns (on Etsy)

Thursday, 23 October 2014
I'm happy to say that we are only 2,816 pageviews away from our one millionth hit on this little blog. That's easy to write.

It's easy to share facts and projects, photos and finds.
But it is harder to write about the personal stuff.
The real stuff that makes up day to day life.
It's partly being vulnerable and partly just not knowing what to write.

Over the past few months I have alluded to my daughter's Asperger's (High Functioning Autism) diagnosis but I haven't addressed it head on for a number of reasons.

1) It is just a fact of life. Yes, it took us nearly 4 years of chasing the tail of 'something' different (after the first 5 years of not putting together the pieces we had) to get to a definitive diagnosis through full assessment and testing with a psychologist. But really, it is still the same kid in the same family. We just have a name for what is going on. 

2) Labels.  I have no issue with giving my daughter a 'label'~ the label/ diagnosis means we can grasp what is going on and how best to support her and help her fulfill her goals in life. It also means we can 'shorthand' it with service providers... "Rowan has Apserger's" is SO much easier to get us where we need to be than "Well, Tourette's Plus, the plus meaning OCD and anxiety, sleep issues and Sensory Processing issues, no, she doesn't tic much, but the OCD and anxiety run our lives and ..." and it means we can access Autism services and resources as well.

Rowan having a label for herself has helped her put meaning to the ways that she feels different or like a round peg in a world of square holes. It gives her the knowledge that different is different, not better or worse or more or less.  She gets to count herself among the bright lights in the history we study~ Mozart and Michelangelo, Da Vinci and Jane Austen ~ and to aspire to make her own mark on the world.  She can own her quirks and feel good about her strengths while putting her challenges in context.

I do have a harder time 'special needs', 'exceptionalities' et al.

Yes, I am a 'special needs mom' and after a rough day of schooling or a change in routine I really, really feel it.  After meltdowns and secretly disposing of reams of paper or hoarded pine cones and hiding in the bathroom just to stop the endless chatter about dragon's eggs, again.  And I need people to get that about me. But really, that is MY need not my child's. She doesn't feel like she has 'special needs', she is just a kid who needs the same things as other kids ~ love, acceptance, patience, boundaries.

And my brilliant, healthy kid walks and talks and plays sports and draws pictures by the hundreds and makes corny jokes. 
In a world of profound challenges for so many people's children, I have got it pretty damn good.
Even when it is pretty damn hard.
So I struggle with 'being identified' and labelled and special and exceptional.
Because every kid is exceptional and every mom has special needs.

3) It is still new.  I haven't really got a grip on it yet.  I have a 35 page report from the psychologist detailing my daughter's psychological and educational make up.  I know that she is incredibly intelligent, but that she also has learning challenges and that this 'gap' is of such size that less than 0.1% of the population exhibit this discrepancy between reasoning and comprehension vs. working memory and processing speed ~ which is how the pediatricians, counsellors, psychiatrist all missed the very obvious signs of autism that were exhibited from infancy. Never, in almost 9 years, did any specialist ever mention the big A.  So I was unprepared for the psychologist to get there early on (along with her certainty in meeting my husband, that he is also on the spectrum) and have it prove out so strongly.

It makes utter, perfect sense.
But I am still getting my head around it.
How to teach math facts to a child with poor working memory (my own is abysmal, too)?
How to teach spelling to a girl who can read better than most adults but can't spell worth beans?
How to create reliable routines to decrease anxiety while increasing flexibility in order to deal with the very changeable nature of life?
How to let go of my own version of a happy childhood~ playing with friends at the beach rather than ignoring them and chasing the ducks for hours.  How to teach empathy cognitively. How to leave a social gathering early, when my extroverted self wants to stay all night but my daughter (or husband) has had enough.
How to not get overwhelmed when I can't imagine my daughter going off to college (or having children or a career) to pursue her dreams when she can't remember to brush her teeth (or why it matters).

Right now I am reading and learning. I am hunkering down and gathering my strength to make appointments and manage services and address the many fronts in this new battle. But mostly I am trying to live into my role as the neurotypical member of the family and figuring out how to teach life skills, executive function and so on, so that this amazing child can have her amazing life, however that unfolds.
Over the years I have likened parenting my daughter to going on a trip.
I thought I was going to Paris. 
I bought a ticket, learned French, planned the sights I would see.
But I got off the plane in Budapest.
And Budapest isn't Paris.
But it is lovely, and the people are warm and the sights are amazing and it grows on you, even if a little longing for the loss of Paris remains.
These days I have been realizing that my journey hasn't been a re-routing from Paris to Budapest or anywhere else. 
It has been a journey home.
To the place where I belong and truly want to be~ and my home doesn't look like your home, or even the one I could have imagined 10 years ago.
But it is mine.
A little schoolhouse in the woods, a simple life full of creativity and challenges.
And lots of love and hope and understanding to soothe the frustrations and the hurts.
With one special child who helps me to see the world through her eyes,
and while it is no Eiffel Tower, no fountain in Budapest, the view is spectacular and surprising.

{I do better in dialogue, so feel free to ask questions, make suggestions, share your journey in the comments!}


Waldorf (inspired) Moms said...

Hi Lori, (LOVE your name!)
Thank you for sharing your heart in your beautiful post. I adore your analogy to a trip to Paris turning into a trip to Budapest...It made my eyes water...

Our family is also on an unexpected journey, but as yours, it's a lovely one. I have two kids with dyslexia and one also is ADHD. (ADHD is considered to be on the autistic spectrum) There are times when the journey has been numbingly frustrating, but I have marveled how we all have weathered through and have become more strong and wise in the process.

On the other hand though, there is such deep joy. My daughter is like yours and read the entire Harry Potter series in 3rd grade but could not spell to save her life. We have found out that she is dyslexic and since getting her specific tutoring help, lightbulbs are going off every day and her spelling has drastically improved. It's such joy to see her confidence soar--she just beams.

My best to you on your journey. As a Mom who has been there and "is" there, I truly understand...

Much aloha, Lori

linda gaylord said...

i am the stay-at-home caretaker for my two grandsons on the autism spectrum.the 12yr old is asperger's,like your sweet girl,and the 9yr old has pdd/nos(pervasive developmental disorder/not otherwise specified),which is shorthand for being moderately to severely autistic,and he is also only partially verbal and suffers from echolalia(repeats everything he hears without comprehension or discernment).their mother,my daughter,works to support the rest of us as we all live together,and she too has aspergers,discovering this at age is a journey in creative coping skills at our house,much the same as at are certainly not alone on this rocky road called autism.currently,every 1 in 55 children in all the developed countries of the world has autism.this is something that the world health agency needs to address,because in a few short years,we will have a generation of children becoming adults who will need more support and care than society is currently able to provide.but it is families like yours and ours that will pave the way for others in our understanding of this disorder.may you have many beautiful days with your daughter,ones filled with more sunshine and rainbows than storm clouds and downpours....

boatbaby said...

Right there with ya mama. Offering hugs and understanding. I have to say, I was so skeptical but dietary changes have made a HUGE difference for my kiddo.

Related Posts Plugin for WordPress, Blogger...

Search This Blog

Inspiring Blog

Sponsor: Reggie's Dolls

Sponsor :: Inspiring Blog

Playsilk Primer

Join the Link Party!

Go Creative!

Supply Kit for Silk Fairy Mobile DIY

Supply Kit for Silk Dolly DIY