A Day In My Life: Celebrating World Down syndrome Day

March 21, 2014

I am 14 years old, in 7th grade middle school.

13046596163_0dba57db2b_hThis is me and one of my friends that I’ve been friends with since Kindergarten, before our band concert. I play percussion, sometimes the bass drum sometimes a tambourine.

IMG_3326That’s me wayyyy in the back, the small one standing up.

Every day I get ready for school, make my own cereal, brush my teeth really well because I have braces. They are yellow and green and food gets caught in them so I have to brush really well.

IMG_4043I love school. I take science, social studies, english, health, art, math, computers and pe.

I like the idea of a phone, everyone has one but all I do is take pictures or call Gram and Gramps on it! They  love to talk to me…


After school I am in an afterschool program and we invent robots, paint murals and have singing club. During basketball season I am on the basketball team and have to practice every day.IMG_2498Here I am waiting for the rebound!

Then I come home and, if I don’t have much homework, I play on my wii or ipad for awhile. I am a super good (beat my Dad even) wii basketball and ping pong player. I love movies, my ipod, music and watching ice hockey. I am really loving Mamma Mia and ABBA right now and, of course, Frozen. I dance around the house and tell my parents that I’m going to where mamma mia is (not sure where that is? but I’m going). I really like using the ipad to look up videos of my favorite movies. I’m good at it!

IMG_3197Here’s me and my mom and Dad at a game! I have a hockey jersey, go Bruins!

I learned how to ski this year, I was nervous at first but after a few lessons I was ready to go to the Winter Olympics!

IMG_3567Pizza! That keeps me slower so I can stop at the bottom. I won awards in Alpine Skiing!

I go on vacation with my mom and dad and what i like best is eating out and swimming in the pool. Here are my legs when I do a handstand.

IMG_2546I could go on and on but there is too much that I am busy with to tell it all in one place. But feel free to read the blog and see all the great things I do.

Here is one of me when I was a little baby… I was so cute!


Life isn’t always wonderful but who’s is? Sometimes I cry because I want friends to spend more time with but my mom says she did the same thing when she was my age. Sometimes I say no and aren’t “cooperative”- I call that assertiveness but my mom says it is important sometimes just to follow the rules. For pete’s sake, all you have to do is wait for it a minute, I just don’t like to be pushed when I’m not ready!

I have Down syndrome but I don’t find that very interesting yet. I know other people who have it that I am friends with too. I’m not sure why it’s a big deal. It’s not easy growing up. I need to work on my eating neatness skills, my reading and writing, learn to use money better. But I want to go to college, get married, get a job as a teacher……

What’s your day like?

Celebrate me please – I am a wonderful person and the world is definitely a better place with me in it! Bye!




May 1st Blogging Against Disablism Day 2013

April 30, 2013

“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…..

Blogging Against Disablism Day, May 1st 2013

3/21. World Down Syndrome Day; Fact-Fallacy-Photo

March 20, 2013

My child is special for her gifts NOT her needs.

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



The Word No….

March 10, 2013

…. 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….

Tweenie Days Blues

February 27, 2013

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.

Self Portrait….

December 1, 2012

I always look best secondhand reflection…….


Photo Challenge Submission

My Husband, Buddy Walk Hero

October 21, 2012

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.

Twofer for the Blog Hop!

October 20, 2012

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.

Choice or Fate

October 20, 2012

My husband and I were having a discussion recently about the new pre-natal tests and all of the controversy around them. Such a complex and personal process to decide about our bodies, our futures, our dreams. One of the thoughts considered was that pro- choice possibly actually opened the door for science in this area since all of this interest in genetics, control over fetuses health and fertility is not only related to the avoidance of difference but also for the right to have control over outcomes within our own lives. Hmmmm….

Whether it be having a baby in the face of infertility, open heart surgery while an infant is in utero or pre-natal testing to avoid what are perceived to be scary outcomes, it is all ultimately about humans making decisions about their own lives rather than letting nature or some supreme being take it out of our hands.

As some of my clients are prone to respond when we get too behavioral on them, choice is just another word for control (with the implication that we’re implying they could have control over their life if only they were better people – shame attack).

The Serenity Prayer position is “…. the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference…. “.

My husband and I did not reject pre-natal testing for ourselves because we were idealogues, pro-choice or pro-life, etc. We wanted this child. This particular child at this particular time. For many particular reasons that would be difficult to quantify. I mean, I could list many reasons, but really I could not describe the “wisdom”, that integration of rationality, faith and emotion, that guided us to move forward towards our child. Religious folks would call that divine guidance. I call that Wise mind.

Wise mind could not exist in a culture/society that did not allow for personal decisions and with a government that made our decisions for us based on somebodies fixed beliefs.

Pre-natal testing in itself seems like a great option to have available. However, the underlying social messages that could be attached to the science can be very dangerous. Eugenics, social engineering, narcissism just to name a few….

Unless great care is taken to help individuals to understand the value of diversity, to not fear their wise mind and to view the vastness of possibilities ahead of them. And also, to ensure that people have the information they need to be able to see all possibilities as bearable, manageable – that society will support individuals and families in whatever decision they make.

For us, as parents to be, we trusted that we would be able to bear whatever was in store. That whatever child we had was wanted and would be loved. I can’t say that I had felt this way at other points in my life and my “choices” were made accordingly along the way. I do not judge anyone who takes a conscious, wise path in parenting.

My daughter has Down syndrome and she is the perfect child for us. We would not want her to be any different. But if she was, we would love her anyway!

Re-Post; Choice or Fate (10/12/11)

I am a Bad, Bad Girl…..

October 19, 2012

Everyone else has been doing such a good job with so many posts about Down syndrome I am honestly completely overwhelmed and awed by this community. I, on the other hand, have only the tired old excuse of illness, fatigue and busyness to explain why I am NOT successful this year at my commitment to 31 for 21. blah, blah, blah, blah…..

Well, you take 400ish photos and then try to review and edit them so that they can be put up in a timely way on a site. It takes awhile.

Or, perhaps it’s the increased sitting in front of a computer all day due to the wonders of EMR (electronic medical records for those outside of that loop) so that by the time I get home I am computered out? Am I a Social Worker, human services provider?  Hmmmm…. please feel free to read Taking the H out of (H)uman Services  for more on that train of thought. It is password protected and if you are interested you can ask and I can try to remember the password (unless you are my boss or a spy). Since I work for a company that finds being challenged cause for smackdown I need to be cautious.

For whatever reason I’ve failed. Sorry folks. You will just have to make do with my sporadic storytelling, re-read old posts or email me!!! Love ya anyway. You all keep up the good work and thanks for doing it!


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