In acceptance lieth peace

May 23rd, 2016

Singing with me on our way to her neurodevelopmental re-evaluation last week~

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There was a glimmer of a question in my mind within her first few months of life.  But I attributed it to her Down syndrome.  Remember, we had very little personal experience with people with Down syndrome before Verity.

My inner query never completely left me, though.  At various times, I would go and read voraciously on the subject.  I remember asking an experienced T21 mom friend whether her daughter exhibited certain specific traits and behaviors I saw in Verity.  When she answered, “No,” the question intensified within me.

Verity showed such tremendous promise during her first two and a half years.  When her developmental progress leveled off and then began to slide toward regression, I blamed myself.  I thought it was probably due to my unusually busy season of life and consequent inability to maintain the intensive one-on-one intervention I had given her during her first three years of life.  It’s always been a full time job to keep Verity engaged in the world around her; being unable to accomplish that and watching her regress brought me enormous mental anguish and self-blame.

But the more pronounced Verity’s difficulties (and they make quite a list) have become over the past few years, and the more I’ve been able to observe others with plain ol’ Down syndrome, the more strongly I’ve suspected that she’s facing greater challenges than just her extra chromosome.

Last Thursday, I finally asked her neurodevelopmentalist straight out, “If we were going the typical route with Verity, in your opinion would she be diagnosed with autism spectrum disorder?”

“Absolutely yes,” she replied, confirming what I already knew.  “It’s less pronounced now than it was at her initial evaluation [February of 2015], but yes.  And you have done a fabulous job with her.  She’s doing so wonderfully well.”

Here’s an informative summary of the dual diagnosis of Down syndrome and autism.  Right now, we fall in the category of parents who are pursuing non-traditional solutions to help their children reach their personal best potential.  For us, it’s the neurodevelopmental approach augmented with the GemIIni Educational Systems.  These have already had a significant positive impact on Verity’s developmental progress, and we’re really just getting started.

To those of you who know Verity, especially if you also know other people with Down syndrome, this blog post may not come as a surprise.  You may feel like it makes sense.  A lot of the behavior you observe in her is autism, not Down syndrome.  While I have your ear, may I say “Thank you,” for the affection, patience, understanding, and acceptance you show to her?  We can’t imagine having a more supportive bunch of church family and friends.  You are a gift.

To those of you who don’t know Verity, this news may sadden you.  I myself would have been crushed by it several years ago.  Even a year ago, I was still saying, a bit tongue-in-cheek, “She doesn’t have autism spectrum disorder, she has ‘waiting for Mama’ disorder.”  She does respond markedly well to lots of purposeful one-to-one time with me in particular, but I didn’t cause her underlying challenges.  Yes, I’ve come a long way in accepting limitations, both mine and hers.

To us and to Verity, nothing has changed.  Verity is the same funny, quirky, sensitive, opinionated, affectionate, smart little person we have known all along.  We’ll keep working hard with her.  The programs we have chosen to help her are helping her.  We will doubtless try other interventions in the years to come.  She just carries another label now that may help others understand her better.

Nothing has changed…except…I might feel a bit more proud of how well she’s doing.

She has tremendous obstacles to overcome every moment of every day.

And she will overcome them.

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Happy mothering! Perspective from a former child

May 20th, 2016

NOTE: An online friend wrote the following insightful thoughts to me during email conversations.  Very worthwhile reading that has come back to my mind at random times.  A little perspective can be a valuable gift, so I asked her permission to share it on The Blessing of Verity.  She granted permission after checking to make sure there was no identifying information that would dishonor her mother.  

Here it is, with love, for all my mommy-friends.  I’m looking forward to reading your responses in the comment section.  Don’t miss the little face at the end.

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I have mentioned coming from a large family. A great family. Very much intact and loving. Still is. My father couldn’t get enough of the chaos and energy his kids brought to the house. He thought we were the best thing since sliced bread.

But I do remember feeling like we kids were “a lot of work” for my mother. Until five years ago, I did not understand that was a lie. It left us feeling confused. We were great kids, high-achieving students, mannerly, consistent, helpful, etc.  None of us gave our parents any grief. My mother did not intend to send that message, but she did with her ongoing fatigue and constant look of exasperation with all that had to be done. She was/is type A. She would say there is no point in doing anything without excellence. That sounds great but is not sustainable. Understanding that the way she raised us, lived her life, was her choice and was not a mandatory rule from God.

I see many, many mothers from large families who have healthy boundaries about what they can and cannot do.

We were cooperative children. I can see now that she had a need to have everything perfect, all the time, with all the kids, and in all areas as a way to show the world she did not “make a mistake” or “get in over her head” with so many kids. It was a crisis in her mind only. Certainly then I didn’t realize that non-perfection was an option because striving to be better seemed ambitious and wise. Joy left the equation.

She is enjoying the grand kids but did not love, love the dailyness of raising children. What a pity for her. But who would covet the days of young children when you were aiming for something impossible (perfection)?

Anyway, I say this to encourage you to believe that your kids really, truly do not care if they have the picture perfect anything – meals, parties, clothes, family times, home…

Nothing brings a kid from a large family more joy than seeing their mother, especially, happy. I actually go out of my way to be nice to myself in front of my children. I have heard them comment to others that their mom loves this or that and has fun doing this or that or laughs a lot when she does this or that…

I remember writing to you once that as a child I dreaded holidays, etc, as my mother would function on like two hours’ sleep for months in advance. It zapped any enjoyment for us children of that which she imagined was the perfect Christmas, Easter, birthday, etc. All these years later she still lacks insight.

My father has…died. I saw him most everyday (he would stop at my house without my mother knowing, since he could relax here.) My mother never understood that wanting to relax is not the opposite of having a productive life.

My dad was a content man versus my mother…even her joy is complicated. It feels like there is less oxygen in the house since he died.

It’s sad, really. In my mother’s quest to maintain her museum-like home, nothing about the house spoke of my father ever living there. Indeed, his very DNA has been scrubbed away. They were married for 65 years!

After my father died we children thought it might be nice to have something of his to remember him by (other than our inheritance). I never stopped to consider that the only possessions that meant anything to him in that eight thousand square foot house were on his nightstand. [Especially] his leather wallet which was stuffed and I do mean stuffed, with pictures of us children and the grandchildren. He used thick elastic bands to keep it together. It drove my mother crazy that his weary wallet was bulging, which in time broke down the integrity of the photos.

The ever-evolving photo wallet brought my father such joy. Honestly, he would literally laugh and smile at absolutely any picture of any of us doing absolutely any little thing.

I say this to say that even in – especially in – a large family, it only takes random photos inside a bulging wallet to bear witness to a child that they were seen and that they mattered.

We children are all still struggling with remembering that we are not and never were responsible for our mother’s well-being. Her well-being was the elephant in the room, and we children were expected to manage that. In our collective minds, we believed that if only we could be good/clean/talented/respectable/tidy/behaved/responsible and obsequious enough, all would be well. We could write a book on lies we believed.

The really sad part is that my mother missed out. We siblings had each other, and the synergy was wonderful.

~An online friend

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Unrelated recent photo of Baby of Happiness because blog posts are always nicer with pictures, right?

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Praises be!!

May 19th, 2016

From Stephanie, around 4:30 in the afternoon today…

We got our approval!!!!!  Praise the Lord!!!!!  Just now!!!!  NYC on Monday and dossier to agency Monday and to China on Tuesday!!!

It is a miracle…this whole adoption is a miracle!!!!

 

Thank You, Lord, for hearing the cries of our hearts and for your mercy toward Annie!  Thank you to all those of you who are taking this need seriously and doing what you can to help!  Please keep praying, sharing and giving!