Yo soy La Lay

adventures in family, faith, and Down syndrome

DSAM17 – Day 31 – Just another kid

31 days of surprises and the top of my list?  She is just one of the kids.


Tonight we went trick-or-treating with the cousins.  House to house through the neighborhood they went, collecting treats galore.  At each house, they all said “Trick or Treat” (or I want treat! or Do these have peanuts?)  and then “thank you.”  After a marathon of stops, they ate pizza on the living room floor and watched Black Day.

And Tessa was just one of the kids.

It’s like that around here.  Sure, there are some differences.  For example, thanks to low muscle tone, her “I’m done trick-or-treating” looks like this:


And, she may or may not have been given some extra candy on occasion due to her extra chromie. (Who can resist a child who so innocently asks for “more please?”)

(One neighbor told her to pick two and she sweetly looked up and said “how ’bout… four??”  They said ok, but while I cheered inside because yay speech!!, made her stick to the two.)


The reality is that out and about, we saw friends from her swim classes and school.  All the kids that said hello treated her like just one of the crowd.  So while the fear of sticking out like a sore thumb had filled me for years, tonight she was just another little girl in a Frozen costume.  

Will every moment always be like this?  This shining example of community inclusion?  Of course not.  There are many battles to come.  But now, on this Halloween Night, I am savoring the joy of a little girl, more alike than different, who brings so much light to this crazy world.

Thanks for spending this month with us. ❤️

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DSAM17 – Day 30 – All the voices do not speak for us

There are a lot of voices in the Down syndrome community.  They are rich and varied and they do not all speak for me.  They do not speak for my family, or for Tessa.

(I think it’s important to interject here that Tessa’s life is hers, as is her voice.  It is not my intention to speak for her throughout her whole life.  However she manages it, she gets her own voice.)

I have found the variance in these voices surprising.  I had a single story of what I thought Down syndrome looked like in a family’s life.  While some have been empowering in their words, well, I did not know how difficult some of the other voices would be to hear.

Recently, I sat in a talk given by a very loud voice “for” individuals with Down syndrome.  Toward the end of her speech, she said this:

“I know we talked about moms from every category, and I know they exist because unfortunately, I see every category at (the organization she runs).  I’ve seen it all, every day, um, I see kids succeeding, and then I also see the kids that are failing.  And I know why they’re failing.  And it’s really hard to not be able to step in and help change that and sometimes they choose a lifestyle and there’s nothing I can do about it.”

^

I cannot tell you how much my heart ached when I heard those words.

If you are a mom of a child with Down syndrome… you need to hear this:  Your child is not failing.

It doesn’t matter if he has no words or uses assistive technology to speak.  It does not matter if she cannot walk 10,000 steps a day.  It doesn’t matter if you are not ready to call someone out for using the word “retarded.”  It doesn’t matter if he doesn’t write his own name on his paper.  It doesn’t matter if she wears clothes from Justice until she is 65 years old.  Your. Child. Is. Not. Failing.

Please hear those words and believe me.  You are doing a good job, and so is your child.

If you have not heard the TED Talk about The Single Story by Chimamanda Ngozi Adiche, it is linked above.  It is a really great talk, and very much worth 20 minutes of your time.

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DSAM17 – Day 29 – Warning Lights

On Friday when I left school, I glanced down at my dashboard and frowned.  Glowing up at me were my low-gas and low-tire lights.  On a Friday, with an hour commute ahead of me, I just wanted to be home.  But, I knew I wouldn’t make it without stopping to take care of these needs.

The irony of me writing a post about self-care tonight, after my husband’s very sweet post yesterday is not lost on me.  But this year at my Rockin’ Mom Retreat, Laura Bruckner’s talk about compassion fatigue and self-care really struck me.

Do you know what your warning signs are?

Most of us are caretakers in some regard.  Small children, maybe grown children, aging parents, students in our classes –  I suspect that very few people reading this blog are void of any other human being who requires their attention on a fairly consistent basis.  And for a lot of us, those humans are pretty tiny, pretty needy, and may or may not carry some extra challenges that can really wear us down.

For example – we are potty training.

I probably don’t need to explain beyond that statement, but just for grins, let me tell you how well it is going:

Last Saturday, she pooped on the (carpeted) floor of my closet.

Today, our “sit on the potty every 20 minutes” game turned into every ten minutes (literally), because in between alarms, she thought it was a riot to tell us that she was going to poop.  And due to the Closet Pooping Incident, we take no chances.  This went on for about 3 hours.

At 5:30 PM, my warning signs began to creep up.

Warning Sign 1:  Anger

Warning Sign 2: An unrelenting desire to eat carbohydrates

I can be patient.  I can be kind and compassionate and loving toward my children.  And, I can be a total b-word.  So when the b-word mom is coming out, I have to find a way to take a healthy break.

My surprise in all of this is how hard is really can be to find the healthy way to take a break.  Before Tessa, when there was just one little one to keep track of, it was easier.  I don’t know if I needed it less, but finding the time to just be on my own to recharge was not nearly as hard.  My calendar has become my best buddy, as a routine has been crucial to finding the time to chill the heck out.  I have found that I am much better at sticking to my strategies when I have them written down.

Walking.

Writing.

Reading.

Wandering through Target.

(There is some debate in our house as to whether that last strategy is *actually* a healthy habit for dealing with stress.)

In any case, I implore you – take care of you.  You must.  This marathon (whatever it is for you) is hard.  You need your oxygen mask; you cannot take care of anyone else if you cannot breathe.

Do you know what it takes to take care of you?

Mom’s Night Out….  Thankful for this tribe. ❤

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DSAM17- Day 28

Maggie is tired.  No, Maggie has not decided to begin self referencing in the third person… this is John.  I promised Maggie I would take tonight’s blog post because I had an inspirational moment this morning and because I think she could use a break if only for one evening. 

Maggie spent her morning today making everyone their own individual breakfasts. One girl wanted eggs, the other cereal, formula for one, and a smoothie for me. She did this all not because she had to, but out of the kindness of her heart.  That’s the moment that got me thinking…Here are some things that do not surprise me:

  1. That Maggie gives more time to others than she takes for herself.
  2. That she is a champion for all her children while never enabling them.  
  3. She has love for all people and an unselfishness that is borderline crazy.

I could go on and on, but I just felt that Maggie needed to be thanked for who she is and what she is about.  The world needs more people like you, honey. People willing to love fiercely and have “dangerous unselfishness.”  I am so glad to share this life with you and you inspire me to be better everyday.   Keep up the good work 🙂

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DSAM17 – Day 27 – We have fun.

We have the best friends.

Also, can I post-date this back today about 40 minutes ago??!

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DSAM17 – Day 26 – Resources for other kids

I will be 100% honest – work is pretty crazy right now and my energy to write is fading quickly down to nothing this evening.  However, I came across a link this evening that explains Down syndrome and is appropriate for children.  I like to pass these things on to my family because while Tessa is very alike in a lot of ways, there are noticeable differences that the other kids sometimes notice.  So here…. if you have kids with questions, check this out:

Brains On – What is Down syndrome?

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DSAM – Day 25 – The List

Here’s a list of 50 51 things (that are mine to share) that I worry about on a daily basis:

  1. Ellie.
  2. Do I have clean underwear this morning?
  3. Do I have dishwasher detergent?
  4. Are there too many calories in this breakfast bar?
  5. If I don’t eat this breakfast bar, what will I eat?
  6. There are starving children in the world!
  7. How do I raise my children to care that there are starving children in the world?
  8. Should I really have bought this Dunkin coffee when I could have donated to a fund for starving children in the world?
  9. Is this coffee that I just bought decaf?  Or will I be wired in 15 minutes and not sleep for 3 days?
  10. Speaking of sleep, did I get enough last night?
  11. Is that a gray hair?  Or a blond one?
  12. Did John get out of bed this morning?
  13. Did John have clean underwear this morning?
  14. When did Ellie last brush her teeth?
  15. My God, what is she going to wear to school today?
  16. Are kids being nice to Ellie on the bus?
  17. Is Tessa being nice to her bus driver?
  18. Did I sign their folders for school last night?
  19. Does Ellie’s teacher believe that she read for 30 minutes?  Or does she know that I’m guessing?
  20. Is it bad that I’m guessing?
  21. Do other parents actually keep track of how many minutes their children read?
  22. Do other children read?
  23. Did my students do their homework?
  24. Do I need to call home if my students didn’t do their homework?
  25. Am I fostering responsible humans in my classroom who can be independent young adults if I call their parents and tell them that their child didn’t do their homework?
  26. Did Ellie do her homework?
  27. Why does she hate math homework so much?
  28. Will Tessa hate math?
  29. Will Lauren hate math?
  30. How will I help them with math if I can’t figure out the math problem?
  31. Speaking of math… how much money is left in my grocery budget for the month?
  32. Did I take chicken out of the freezer for dinner?
  33. Can we afford to go out to eat instead?
  34. Are there too many calories in a restaurant meal?
  35. Are there too many calories in a glass of wine?
  36. Is it bad that I have a glass of wine on Tuesday night?
  37. Speaking of wine… when did John and I go on our last date?
  38. Do we go out enough?
  39. Are we missing out on quality time with our kids if we go out again?
  40. Does my mom like watching them on the weekend after doing it all week?
  41. Does she just say yes because she feels bad?
  42. Do my children behave with her?
  43. Do my children behave at school?
  44. What if Lauren is naughty at school?
  45. What if I get cancer and die and can’t teach Lauren to be good in school?
  46. When did I last cut my children’s fingernails?
  47. Does Ellie need to learn to cut her own fingernails now?
  48. Am I holding her responsible enough for her own care?
  49. Am I raising a strong, independent young lady if I don’t make her learn to be responsible for her own care in first grade?
  50. Can she tie her shoes?
  51. Am I a bad mother because I have no idea if she can tie her own shoes?

Anyone notice what is missing from that list? (Which, by the way, I came up with in approximately 12 minutes and 43 seconds because that’s how fast I can type).  This is what is missing from the list:

Image result for trisomy 21 chromosomes

After almost four years, I am so surprised at how little I worry about that goofy little extra chromosome.  It took a little while to get to this point, but truly, at this point, I am far more concerned about the clean underwear.

Just sayin’

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DSAM17 – Day 24 – The Cutoff

I’ve been so grateful for social media and the ability to connect with other families.

Sometimes, though, I can’t take it.  I have to walk away for a little while.

This mostly happens when really depressing stories about people’s beliefs about Down syndrome are making the rounds.  Sometimes there’s just a significant amount of drama that I don’t feel like reading.  Sometimes people get mean… sometimes my hormones get in the way of my ability to be patient with mean people.  So I walk.

For all it’s good, there can be some exhaustion in problem-solving all the time.  In those moments, I am thankful for the ability to put the Internet away for awhile.

Today is one of those days.

❤️

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DSAM17 – Day 23 – $$$

Let me start with this: I am not asking you to make a donation.  Just FYI.

One of the things that really has surprised me is the number of Down syndrome advocacy groups that exist.  I think it is pretty great that most families can find some way to connect with others and be a part of the larger Down syndrome community.  Groups exist to inform, inspire, educate, advocate… whatever your passion is within this world, you can likely find a group that will fit your beliefs.

We are thankful to have the means to support some of these organizations with our time or our money.  But, it has created a bit of a conundrum for us – how do we decide which organizations to support? 

Each and every family has to decide their priorities for giving.  Here are ours:

1.  We look for groups that align with our vision for Tessa – living an independent life in her community, included in her school, career, and within social circles of her choosing.  What we have sought for help in providing this life for her is information from those who have walked before us.  Our family connects most closely with groups that support our child through inclusion with typical peers, not exclusion in separate spaces.

2. We look for groups with minimal overhead costs.  It is our preference that dollars donated be used directly in support of programming for individuals with Down syndrome and their families.  We are not as likely to support groups with CEOs or directors who make large sums of money.  Our favorite kinds of groups to support are those that are run by volunteers.

3.  Finally, we try to support groups that include individuals with Down syndrome in leadership positions (like on their Boards or other committees).  We believe that in order to best support individuals with Down syndrome, we have to listen to their voices, their needs and concerns.  Very early in Tessa’s life, I heard the phrase “nothing for us without us.”  It has stuck with me for all this time.  It is really vital to hear those voices in the decision-making process for organizations that support life with Down syndrome.

There are three groups that we most often support (either with time or with resources).  Those groups are UPS for DownS (our local group dedicated to the inclusion of individuals with Ds in their communities), the Down Syndrome Diagnosis Network (supporting families birth to three as they navigate the diagnosis experience), and Ruby’s Rainbow (providing scholarships for individuals with Ds as they enter post-secondary schooling).

I couldn’t possibly list out all of the other groups that exist that are worthy of attention, but those are our favorites! ❤️

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DSAM17 – Day 22 – Quiet

I thought life would always be chaotic.

Let’s be honest – with three (fairly) small children, it is chaotic.  There is always crying, or singing, or both, somewhere in my home.  Frazzled is pretty much how we roll.

My mom just texted me about prepping for Christmas and I don’t even have a Halloween costume planned for Tessa yet, so yeah.  What’s she going to be?  No clue.

But for the past 23 minutes, I have had blissful silence.  Ellie is down in the basement watching old episodes of Mr. Rogers.  Tessa has finally fallen asleep, as has Lauren.  John is out and about.  And I am just enjoying my bay window, listening to the rain, and making a list of long-term home goals.  

Moments to recharge can be really hard to come by.  It is so vital that we find them.  At our last DSDN retreat, we learned about compassion fatigue and the desperate need for self-care.  That need is precisely why I’m not doing laundry or dishes right now.  I’m just quiet.

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