Life Decanted

No, not this she, the other main gal in my life.

Graduation from High school is a huge deal in this house. Over 18 years of battling, angsting and running around for school activities just to “keep up with the typical Jones” was quite a feat for this late blooming parent and introvert.

Now I feel a bit collapsed and a new worry stream has emerged. What is next?

She is taking to no school like a pro. She has been seeking more control over her life for a few years now but, for her, a life would be a lot more video  and ipad time. To be fair she also talks about going to college, working and moving to Boston. I’m more along the lines of learning to keep your room clean and doing your laundry HA!

So now I parent an adulting gal with DS… a new adventure. Oh I forgot- I am also working full time from my bedroom. And have become motherless myself. Lots of new horizons and things to work through. Sigh. Wish me luck!

I recently was reminded of the world of blogging that I basically abandoned around 3 years ago when I fell head over heels for the immediate and addictive gratification of Facebook community.  Oh my. Can’t promise that I am going to be back here for good but I thought at least I might catch up any possible readers left! Who knows, maybe it will catch on with me again!

But this format is so much more complicated – (whine).

Anyway – somewhat boring in that, of course, it is all about my daughter, the epicenter to our storm. She is now 17! Amazing to us too. In 10th grade public high school.

Here is a picture of the native K. caught in her school environment somewhat cooperatively!

She Still plays basketball in our high school Unified team as well as intramural team. She continues to ski with the Special Olympics team and moved up to intermediate competitions this year and she swims as well on both the town Swim team and the SO team. She is also plays percussion in the school band (although that is a struggle and story for some other time).

She continues to be a pip, albeit a teen drama queen of a pip.

We continue to struggle with typical issues of all parents of kids with DS – IEP mtgs, social isolation, transition to adulthood and vulnerability concerns. As K’s 18th birthday approaches we will be applying for guardianship, not a light matter and we have our special needs trust and wills in place.

Life is full, chaotic and sometimes painful and/or stressful  (as is the current world we live in so much more worse) but we persist …….

“The eighth annual Blogging Against Disablism day will be on Wednesday, 1st May. This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination (known as disablism or ableism). In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made.”

Blog Diary of a Goldfish has been hosting these fabulous events, for 8 years now. I’ve participated for most of those proudly. I can write about a lot of issues but simply stated will have to be sufficient for where I am at this year and thus I am merely directing others to my previous post.(https://starrlife.wordpress.com/2013/03/20/321-world-down-syndrome-day-fact-fallacy-photo/)

I strongly encourage you to join, read, support Goldfish in her event….spread the word, add your words.
Here’s where to go…..

Fact:
My child is special for her gifts NOT her needs.

Fallacy:
Someone who gives birth to a child without Down syndrome is lucky.

Photo:

…. is one of my favorite words.

I appear to have inherited a version of my fathers tendencies, which is to balk at every new thing that crosses my path. Yes, to some that may seem contrary and difficult. For me it is an essential way of feeling in control of my environment, slowing the process of decisions down since I am a person who has a difficult time discerning other peoples wants and needs from my own. It is a sort of situational individuation I reckon. A protection of the power of my vote and against the floods of me,me,me.

And, yes, my child has (a bit 🙂 of it too! And an extra chromosome to boot… which came first is hard to say- nature or nurture, forever a mystery of the source. People with DS are quite famous for what is labelled as “stubbornness”.

When she says no I see my own process from a new perspective and can, sometimes, frame hers differently than just defiance. I can (sometimes) respect her emerging power. When she was little I was awed by how such a small person had so much “hood”! And I swore I would help her hold on to that spark, honing her skills yet not quenching her spirit. This is quite a different approach than my own mother who brooked zero disagreement. I want her to be able to set limits for herself and be in charge of as much of her world as possible. My experience of life is that there is a damn shortage of opportunities to so.

However, the flip side of individuation and control is cooperation and there in lies the skillful balance of relationship and community. She is way more eager to be in positive relationship than her mother is! She teaches me daily the art of giving generously and that love is more important sometimes than winning. This is her “bigger Yes”.

Looking at her at age 13, clearly I haven’t dimmed her spark as she grows up and moves into turbulent adolescence. The word no continues to be a part of her well articulated vocabulary. It hasn’t been easy and I’ve polished a few skills myself along the way. One thing I’ve observed is that, given a little extra time – often just a count between 3 and 10- my gal can start with the No and talk herself into a more cooperative position IF I walk away and give her the space to do that. Sometimes it helps if I clarify prior to walking away (not far) any rewards she might gain for a more positive attitude. But truly mostly what wins her over is herself! Her innate sense of pleasure in being in relationship with another. Most of the time…. ( and more often with others than with her mother:)…
And most of the time I can allow an initial no without engaging in a battle. Most of the time….

Many of you may already know that my girl is now 13, yes really almost 13 1/2, headed off to middle school next year. Leaving the safe small pond of her elementary within walking distance where she’s known most of the kids in the upper grades her whole life. Leaving her afterschool program where she gets to play with mixed age group of kids and we get to work comfortably to the end of our work days. Leaving her jump rope team, her SPED team, her drums in the band.

Off to a new big, wide world. For her and for us.

Now, since I’ve never had any child but one with DS I can’t say how it is for parents who have kids without DS , but new environments are just so stressful for me – whether it is a summer camp, a new social activity, a new friends family. This has nothing to do with my anxiety disorder and shyness – sigh. It is above and beyond. I like to carefully consider the where’s, who’s and rules of each new space. I typically craft- either on paper or in my head- a list of issues, strategies and tips to help new people create a space that is welcoming and understanding of my child’s foibles.

In a couple of weeks we will be going to take a tour of the middle school with a SPED person and start the transition process. I know that they move from class session to class session and need to navigate the halls between and I know that that means hundreds of possible distractions between one class to another. But I also know that my gal LOVES structure and schedules, often reminding her teachers of what is coming next. I know that it abuts the high school – attached but separate in function. I’ve heard that there are all kinds of after school activities and programs to fill in for the afterschool program she has now. Hoping!!!

That’s all I know about middle school.

I also know that she is aging out of many of the summer camp staples that we have previously relied on to get through the summer days off from school. But last year we tried the Boys and Girls Club and she had a very positive experience with them – in fact they said that she could come to camp there and be a member as old as she wanted to. They rock a kid friendly, laid back environment that I appreciate compared to some of the (neo-nazi) more expensive and fancy camps we dabble in.

We are on the cusp of many new decisions about independence – cell phone?,walking alone?, able to be dropped off places that she is familiar with? My husband being far more adventurous than I looks forward to these events. Me – not so much.  With her newly developing body and attitude to match I am protective since her judgement and safety skills are not as consistent as I would like. I rely on and am grateful for the scoping out the support of the families that are already in this process or have gone through much of it already.

I have to start to let go… don’t I? Do I really? Well, I don’t have to rush.

Have I said before how proud I am of my husband? He did it. He got the 4th Annual Buddy Walk to happen ! It was a challenging year with many obstacles, most of it from human service providers ironically and with a decided shortage of parent support. We are a small community and it becomes difficult to have such a small pool of people to do all of the work. So I really do understand.

Luckily, the folks that were involved were incredible! People we never would’ve thought of just got out and offered help (thank you!). One of my husbands traits, for better or worse, is being intractable, determined and focused on his goals. I am not really like that so I am awed by his steady on approach (I am more of a wavering wanderer).  He has a deep personal passion for the message of the Buddy Walk and, as the creator of this local version, takes great care, investing so much time and thought into it (hours and hours – I can attest to that).  This can create some deep pains and ponderings when others do not meet those same level of expectations or same passion for that dream. It is a labor of love.

 And when we are walking through the center of town it all feels worthwhile!

Thank you honey.

Well, I’m cheating since this is actually just a link to a former post titled Who Makes the Decisions About Who Is Normal . So that makes 2 re-posts in one day….. I already told you I’m bad.

But, forget my evil ways.  The Blog Hop is a wonderful place to be and is a great way to get to know many new friends. It is sponsored/hosted by two lovely bloggers, The Unknown Contributor (TUC) and With a Little Moxie (Meriah) who have all of the links to the hop listed on their sites (since WordPress can’t manage the linky tools).

So Hop on! As you may be able to tell the theme this week is “What is Normal?”. Great question.