Tuesday, August 19, 2014

Tuesday Phone Dump.

It's been awhile since I did a phone dump post….

I go back to school next week, students (including Ellie) return to school after Labor Day, and we have a fun visitor arriving later today.  Lots of prep work, classes, lesson plans and the like are on my agenda, along with some fun time with our visitor.

Yesterday I laminated a bunch of sight word poems and made five labels for each student's name.  Fall is coming!

How are you closing out summer?
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Thursday, August 14, 2014


Having a child with a disability makes you a little bit tougher, but also a bit more sensitive.

The comparison game can steal joy from a special needs mama, and the comparison game is toughest when comparing your child to others with the same disability.  When Ellie falls behind her typically developing peers, I may be sad for her briefly, but I get over it and she hasn't seemed bothered yet.

But when I try to compare Ellie to other kids with Down syndrome, the results are never good.  Not because she fares poorly (she doesn't) but because there is always someone better at whatever it is I'm comparing.

It starts with…
"That kid with Down syndrome is healthier than my kid."
"That kid is sitting first."

It progresses...
"Oh, that kid with Down syndrome will go on a ride at the fair without a tantrum."
"Oh, that kid with Down syndrome can go up and down stairs easily."
"That kid can walk across the beam."

Many of us in the Down syndrome community try to have some sensitivity when we brag about our kids, knowing that every milestone comes with a lot of hard work, and many of our friends' kids are still working hard to achieve whatever the milestone may be.

I also really don't notice Down syndrome as much as I used to, which may seem odd, given that Ellie's features identifying her extra chromosome are more obvious as she ages.

All of this came into play recently.

I was alone in an elevator with a certain child in a stroller who was being loud.  And uncooperative.

Yep, it was Ellie.

Another mom and grandma, accompanied by a child in a stroller, step onto the elevator.  As we were in Puerto Rico, I told Ellie, "dile hola."  (Say hi.)

Ellie said, "NO!" because she is three and was being uncooperative.

"Does she speak?" asked the mom.

"She never shuts up, unless I tell her what to say!" I laughed.

"Oh, my daughter doesn't have many words."

And as the mom made a weird face and then got out of the elevator in the lobby with her girl, I realized that the girl in the stroller also had Down syndrome and I was a total jerk.

My answer was true.  It was the answer I would give to almost anyone.  But it's a jerk answer to a mom whose child doesn't speak.

How do I know?  Because I've been hurt unintentionally by "Oh, once she starts walking you'll be wishing she took longer" and other comments.

And I probably hurt someone, all because I wasn't paying attention.

So what's the point of sharing this?

I need to slow down and pay attention.  What I said was true, but that didn't make it the best approach.  Maybe, "Yes, she talks."  Because complaining about what your kid does when another kid is working hard to do the same thing is insensitive.  And I know better.
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Tuesday, August 12, 2014

A Guest Post: Ms. Lisa, Ellie's Speech Therapist

Of the questions I get on this blog and Instagram, the most common questions are about speech.  Ellie speaks fairly well for a kid with Down syndrome. While we worked hard with her, I'm fairly certain that her natural giftedness plays a big role in her non-stop chatter.

I've also received a fair number of queries about which "program" Ellie uses.  I'm a big believer in traditional early intervention therapies, and we hit the jackpot with our therapists.  While the official relationship with Ellie's first therapists ended when she entered school, I've stayed in touch with all of them.

I got this crazy idea that Ms. Lisa should be the one to tell you about Ellie's speech, since she's a professional speech therapist and I'm a mom with a special ed certification.

And then, I ran into Lisa and totally suckered her into this.  So a huge, huge THANK YOU to Lisa for being awesome even though her official reign as Ellie's SLP ended a year ago. 

First I will start by saying I’m excited to be sharing some tips and tricks with everyone here.  When Megan and I ran into each other a few weeks back and she asked me to do a guest post I laughed and said “sure,” secretly hoping that she never would ask again.  Well, she did and because Megan always took such good care of me when I worked with Ellie, I thought I better hold up my end of the deal.  
Being an Early Intervention therapist has been one of the best learning experiences of my professional career to date.  Having families welcome me into their homes to take part in supporting the growth of their child is an honor that makes my job incredibly rewarding!  

The therapy approach that I try to employ with young toddlers and preschool- aged children, especially within Early Intervention (home- based, family- centered therapy for birth to three year olds) is real- world, child- centered fun! All of you parents know that when your toddler doesn’t want to do something, there’s very little you can do to change his or her mind, so in therapy I try to let the child pick what we play.  You can make just about any activity a language- learning activity.  For example: if your child is building his or her core vocabulary (basic words that can be used in a lot of different activities), grab some containers of different sizes and shapes, some blocks or small toy items and now you have the supplies to work on requesting, turn-taking, and modeling language. 

When parents ask what they can do to make an impact on their child’s speech development, the best thing I can suggest is to talk to their child throughout the day and to give them different life experiences.  It’s all about creating a need to communicate! Go to the library for story-time, take your child to the grocery store (when your list is short!), go to the pool, the park, just about anywhere where they will encounter new things to look at and talk about and even some new friends to play with.  
Also, if your child is working with a Speech- Language Pathologist, be involved in his or her therapy.  Participate directly in sessions if you can, observe, and ask questions whenever you need to.  Ask your child’s therapist for a direct suggestion of what you can practice till you see them again (be it a specific sign/ word, or activity).  

Some of my favorite tips and activities for parents of children with developing language: 
  1. Shake things up! Put a favorite toy in a visible but high-up place (hello communication opportunity!), stick a much- loved snack in a Tupperware that your child needs help opening. 
  2. Offer choices when possible- giving forced choices serves as an opportunity to model language for your child and also lets them feel they have control to make a decision in the situation.  
  3. Pretend food or empty food containers- let you little one “make” you something to eat, pretend to mix things in bowls with spoons, and get to serve you. Children like to “play grown up” and imitate things they’ve seen you do.  
  4. Get on the floor! Get down on the floor and play with your child.  Turn off the cell phone, put up the computer and keep the television off! When you are available both physically and mentally for your child, s/he picks up on that. You are the best play activity for your child! 
  5. Play off of your child’s interests- if your little one likes trains then start there.  Make silly sounds, even sounds that trains don’t ‘normally’ make.  Model sounds and words that your child can work toward imitating in a low- stress playful situation.  

Megan shared that some of her readers might be looking for suggestions for communication with a non-verbal toddler or early elementary school aged- child.  Personally, I am an advocate of a total- communication approach to learning and teaching.  What that means is that signs, pictures, approximations of words, words, or any viable and reasonable attempt to communicate is accepted.  
One strategy is to start with a few signs, especially for activities or items that your child wants/ needs and struggles to communicate about (eat, juice, cracker, teddy, train, go, etc).  Signs are great because while you can’t physically get your child to say words, you can physically assist your child’s hands in producing the signs as they begin to understand them.  
Another strategy to teach communication is to take and print pictures of high frequency items and activities that your child wants to communicate for.  When S/he wants crackers for example, encourage her to point to or give you the picture of the cracker to communicate what she wants.  Each time she exchanges a picture for an item or activity, you pair it with the verbal word as a model.  Over time, building your child’s repertoire of signs and pictures paired with verbal words. 
Using these ideas, I try to follow a 1-3 rule, which means that I will model a word or sign, only up to three times for a child to imitate.   If after the third model the word/ sign isn’t imitated, the item is given to the child and you move on to a different communication opportunity or a new turn.  

Above all else have fun! I know struggling to communicate with a toddler is difficult.  It’s hard for us as the adults and even harder the little ones so try to keep learning and communication fun and motivating.  

Thank you, Lisa!  You are the best and we wish you could be Ellie's school therapist, too!
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Sunday, August 10, 2014

Fair of Fear.

Our county has a pretty urban feel, but we still have a county fair.

Because we are kind and loving parents, Matt and I thought we would bring our child to the county fair for some fun.

Things started out okay.  Ellie met some cows.  We watched some pig races.  She had mixed feelings about a bounce house (but the bounce house was about 7 million degrees.)  We ate a smoothie.

Ellie's "HI COWS!  COWS EAT GRASS!  YUMMY!" face.

And then, foolishly, we bought tickets for our little darling to ride the train.

See, Matt and I had this crazy idea that Ellie might find a ride fun.  We were very, very wrong.

The train was pretty gentle, as in, have a smoothie on the train gentle.

Things seemed okay while waiting.

And then the train moved.

And Matt had to keep Ellie from climbing out of the train.  She tried more than once.

Since Ellie thought the train should be named "El Tren de la Muerte," we took some time to visit the inside vendors.  We thought that some air conditioning might calm Ellie down a bit.  She laughed, scored herself two free wands and a free balloon, and made friends with a parrot.  (A local bank had someone dressed in a parrot suit.  Ellie asked the parrot to pick her up.)

And then, we realized we had a few tickets left.  Now that Ellie was cooled off, surely the "ride a nice worm around in a circle ride" would be fun, right?




Oh, and Mom, chill.  She's totally fine.
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Saturday, August 9, 2014


One of my biggest fears in having a child with Down syndrome was speech.

And while Ellie's speech is delayed, speech is one of her relative strengths.  When Ellie busts out a great new sentence or word, I smile.  (I may have smiled bigger when she finally attempted the bars at gymnastics, but seriously, this child's commentary is hilarious.  Every single day.)

Here are some recent winners:

Me: Ellie, what do you want to be for Halloween?
Ellie: An iguana.

Overheard, Ellie talking to her doll: Baby, FIRST I change your butt.  THEN you have a snack.  (Oh, my!)

Looking at a picture of a great white shark, laughing: Wow!  Crazy teeth!
And bedtime prayers after watching Shark Week on Netflix: Dear God, bless sharks.

Making a birthday card for her friend Louisa:
Me: What should we write?
Ellie: Happy birthday Lulu.
Me: Then what?  Like Lulu, you are…
Ellie: Lulu you are CRAZY.

Me: Ellie, be quiet.
Ellie: No.  I be a ANIMAL!  Quack.

Ellie to her stuffed dino: Dino, you go pee pee on the potty like a big girl.  Yay!  Good job.  (Turns to me, rolls eyes) CLAP for Dino!

Randomly, at the breakfast table: Puerto Rico beautiful…. there dolphins.

Check out this post for more "Golden Moments."
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Wednesday, August 6, 2014

Recent Favorites and Lately.

Lately: Potty training.  We are on day 2 and at about 50/50 success (nap/bedtime excluded.)  I won't write much about potty training here to keep Ellie from being super angry when she's about 13, but let's just say that in potty training, much like in life, Ellie is funny, strong willed, a little sneaky, and 100% trouble.  But funny.  Always funny.

For those of my readers who don't have their own child with Down syndrome or who have younger kids with Down syndrome, low muscle tone and communication issues tend to delay potty training a bit.  We specifically decided to wait until after summer travel, as a newly potty trained child + a road trip to Florida or a flight to Puerto Rico would be…. un-fun.

Potty training means we've been at home a lot.  Since school starts in a few weeks and I'm taking a class next week, I've been trying to get organized for fall.  Here's what I've got so far:

* After buying/washing new clothes for Ellie, I'm putting them away by outfit.  In big zip locks.  That way, Ellie can pick an outfit, but without wearing a tutu plus purple uggs plus glitter.  I hope.


Freezer meals.  I've been cooking lots of them.  These quinoa bites are a favorite.  (A favorite for Ellie and I.  I also made enchiladas because Matt is not 100% sold on quinoa.)

I'm not at all one of those super-organized moms, but I want to do what I can to have as much time as possible with my family this fall without stressing about junk like what to make for dinner.

Before we started potty training, I realized that a) Ellie hasn't been at gymnastics for almost two weeks because of vacation and b) she hasn't worn orthodics all summer.  I just put her orthodics back in her shoes, and we also practiced some climbing to make up for absolutely no physical therapy this summer.

Some fantastic links, because I've been wasting time online and not leaving my house:

A bible study for people with intellectual disabilities!

Toddler Shark Week shirts on Zulily.  I bought Ellie two last time they were offered.  I haven't purchased any more yet, but I doubt I'll be able to control myself.

Sticky9 has a big sale right now.

Lots of good posts from an author I like right here.

Tomorrow, we are getting out and headed for gymnastics.  Whoohoo!
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Monday, August 4, 2014

Odds and Ends.

This post is just some odds and ends, wrapping up a few thoughts from the previous week or two and sharing some great information.

Down syndrome and Puerto Rico.  

I'm not sure if Puerto Ricans are exceptionally friendly to all children, to kids with Down syndrome, to little blonde girls running around yelling "Hola!" or if we just got lucky, but we witnessed Ellie getting some great treatment on vacation.

We got to pre-board in San Juan without question in order to get her carseat set up.  She scored a free kayak ride.  She scored free mango.  Every person she approached treated her with kindness, and she approached a LOT of people.

Also, while we fed pigeons in a park, I noticed a boy noticing Ellie.  He was an American, maybe between 8 and 10.  I noticed him walk up to his parents and whisper something.  He wasn't rude at all, and he didn't know I was watching him.

A few moments later, his parents came over to say hi, with his sister - who has Down syndrome.  They were sweet as can be and his sister was stunning.  I was impressed by the fact that he took the time to notice and that he was subtle.  Matt and I walked away from the encounter with big smiles on our faces.

A great cause.

Check out this Facebook event.  Infinity scarves, $20 plus PayPal fee, and the proceeds to a family stuck in the adoption process - their daughter is legal theirs, but they can't leave the DRC with her.  Heartbreaking.

Sample scarves.

My friend Stacey has set up the fundraiser, and she makes fantastic stuff.  Remember this dress?

Seeking organization tips.

Help.  I have this grand plan of being more organized in the fall.  I'll take any fantastic organizational tips you've got!  So far, I'm trying to put Ellie's clothes together by outfit, cook some meals ahead to freeze, and get rid of all the extra junk in our house.

So the bottom line?  I love Puerto Rico.  Buy a scarf.  And hey, if you buy a scarf, you are helping get pre-organized, because you can use it as a Christmas gift!

Also, Ellie has grown up a LOT in the past year.
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