I Am Not a Mind Reader Either

I follow and read quite a few blogs, especially now that I found Bloglovin to organize and put them all in one place. Many that I follow are written by special needs moms or for special needs families. Each is different and provides interesting insights. Of course, I have my favorites.

One of them recently had an awesome post about her young daughter who uses a communication device and how the mom must remind herself not make any assumptions about what her daughter is trying to communicate. It was an excellent reminder to me as well.

I know my Brielle. I know her likes/dislikes and her life experiences. It's rare when (I think) I can't figure out what she's trying to tell me, even when she gets lazy and doesn't sign complete sentences or can't figure out how to sign certain things.

Knowing what Brielle might be trying to tell me and being a mind reader are two very different things.

By assuming I know what Brielle is signing when she doesn't use complete sentences, I am selling her short. I can't do that. Simple as that.

Thanks for the reminder, Dana!

The Same Question

People, by their very nature, are curious. They try to figure things out. I know that's why people sometimes stare at Brielle - they are trying to figure her out -- especially children.

What people might assume is that Brielle does not notice or care if they stare. They are wrong.

Once in a while, a brave soul might ask a question. No respectful question is too personal. I'm an open book, literally. After all, I'm writing a book about our lives.

So, what questions are most often asked?

What I Expected When I was Expecting

1994 - Pregnant with Ashley

It difficult to remember what I was thinking nearly 20 years ago when I was expecting our first child. However, visions of tiny toes, cute little onsies, and tights with lacy bottoms come to mind.

Sure, I expected sleepless nights of midnight feedings and worries over late night fevers. But, I also expected mornings with Cheerio-filled highchair trays, afternoons playing hide and seek in the park, and evenings snuggled up reading picture books carefully saved from own childhood. I expected  recitals, baseball games and gradautions. I expected pictures of first steps, first communion, prom, weddings and grandchildren.

Then I was told we might expect something very different...

Wednesday's Wacky Words - Myself!

In the past few weeks, as I've been working with Brielle on doing more for herself and helping more around the house, there is one word that keeps coming up again and again.

MYSELF!

She's been signing this a lot lately and I love it! Good for you, Brielle!  :)

Wednesday's Wacky Words - Interjections!

Remember that Schoolhouse Rock episode called "Interjections"? It's one of my favorite episodes and brings back a lot of childhood memories of watching Saturday morning cartoons.

 

Brielle's use of interjections is always funny. Although there are signs for  "hey", "awesome" and "wow", there are no signs for most of them, so Brielle spells them out.

Her favorites are "Y-I-K-E-S", "A-W-W" and "U-H O-H". But, one of the funniest interjections she uses is "U-G-H" which she usually follows up by smacking her forehead. Even funnier is after smacking her head, she sometimes signs "O-U-C-H".  A double interjection!

Wednesday's Wacky Words: Beds

Brielle says the darnedest things. Well, she signs the darnedest things. That's what "Wednesday's Wacky Words" is all about -- the funny way she "says" things or the funny way she tries to put signs together to communicate.

A few nights ago, after she had only been in bed a few minutes, Brielle came stumbling out of her room bleary-eyed and a bit tearful.

"My bed is grumpy," she signed to me.

"Huh?" I asked her.

"Come see," she signed to me grabbing my hand to drag me to her room.

"What is she talking about?" I thought to myself. "And what exactly is a 'grumpy bed'?"

"Look," she signed when we got to her room.

Her "grumpy bed" was disheveled, covers going every which way. She wanted me to fix her sheet, blanket and bedspread and make them nice and neat.

So THAT'S what a "grumpy bed" looks like! I guess I hate when my bed is grumpy, too.

Silly Brielle.

Love Infinitely

A special wooden statue has sat on our living room mantle over the fireplace since we got more than five years ago. The name of the statue is “The Infinity Flame”. It has always intrigued me.

Almost since we got it, I have been thinking of getting it as a tattoo. It is completely out of character for me to want even want a tattoo, but somehow I still wanted it. Fear of the pain has kept me from getting it as a tattoo, until now....

Ashley turned 18 a month ago and had been thinking of getting a tattoo of the world’s continents on her foot. She has a passion for travel and will be studying Hospitality Management at college next fall. How fitting that she wanted “the world at her feet”.

So, we both mustered up the courage and got our tattoos today!

Ashley went first. I held her hand tightly and she winced for 45 minutes as the tattoo artist did his work.

I was so proud of her for being so brave! Then it was my turn...

Yes, it hurt... a lot.

Once the tattoo artist got the outline done on my back, I asked for a break. Within a matter of moments, I felt queasy. I laid my head to the side on the back of the chair... and then I passed out. Ugh.

It felt like I was out for 30 minutes, but Ashley said it was only for about 20 second. I felt so badly for scaring her like that. She was such a help putting a wet paper towel on my forehead and holding my hands. I drank some water and slowly ate a few crackers and felt much better within 15 minutes.

I was able to lie on my stomach to get the rest of it filled it. Less than three hours after we walked in, Ashley and I walked out with our new tattoos.

With the sign for “I love you” in the middle of the Infinity Flame, my tattoo has special meaning for me. I think of it as being titled “Love Infinitely”.  

It will always be part of me and a reminder of how to live my life.

It means respect, acceptance and show love always. How fitting is that!

Brielle Noticed (Revisited)

What is it about our Thursday trips to the grocery store????

We had just arrived at our second grocery store and were in the produce section. I was picking out onions and Brielle was headed back to the cart after getting us a head of iceberg lettuce. She was all smiles, HUGE smiles. She pointed to a lady near the broccoli who had her back to us. Uh oh, I thought. Here we go again....

When I asked Brielle who that was, she signed, "Friend. She said hi to me."

We are very used to people knowing Brielle from school or other activities and greeting her in public. Half the time, Brielle doesn't know who they are. Sure enough, Brielle couldn't tell me who this person was and that wasn't the surprise. A small surprise was that this lady didn't come over to introduce herself to me or talk more with Brielle. But, I dismissed that little breech in proper manners. It wasn't a big deal standing there in the produce section.

As it happens so often when you're in the grocery store, this lady seemed to be walking through at the same pace and on the same path as we were. We often passed her or we followed her or she followed us. Not odd. Happens all of the time.

But also very often on this day at the grocery store, Brielle broke into huge smiles, pointed at the lady and signed to me that the lady was being nice to her, saying "hi" to her or waving at her. Not completely uncommon, I suppose. Once in a while an adult stranger might go out of their way to be nice to Brielle.

The odd thing was that this lady never made eye contact with me. Every time I looked in her direction, she seemed to be very "busy" looking at whatever was on the shelves in front of her at the time. It was as if every time MY back was turned, she took the opportunity to engage Brielle.

This happened throughout the store during our 30 minute excursion there. Finally, when I was unloading our cart on to the conveyor belt, I caught this woman trying to interact with Brielle when she thought I wasn't looking. I waved and smiled as she passed us and entered the checkout lane two rows down. I hoped that might encourage her to at least acknowledge ME in some way. Instead, she seemed to try to hide her smile and went on her way.

Did she even know Brielle? Had she seen Brielle and I signing over tomatoes and knowing a little sign language decided to greet Brielle? Does she have a special needs child at home or in school, but just didn't know how to approach me? Why the secrecy? I didn't think she was some child snatcher or something. Her odd behavior intrigued me more than creeped me out or put me on the defense.

I wish I had been bold enough to just ask this woman who she was and why she was being so secretive about communicating with my child. However, my confidence was weak and I was in a hurry to get home to beat the rain showers. We pushed our cart to out of the store to our car and didn't see her again.

So, this makes two Thursdays in a row of strange interactions with strangers at the grocery store. Maybe we need to break our routine and try going to the grocery store a different day of the week.

Brielle Noticed....

After an appointment with our chiropractor this afternoon, Brielle and I went shopping. We were getting out of my SUV at the second grocery store (yes, I shop at two... to get the best deals, of course!) when I noticed Brielle seemed sad. I asked her what was wrong several times, but she didn't answer. When I asked her if she felt sick, she signed to me, "No, not sick." Exasperated that she wasn't telling me what was wrong, I told her emphatically she needed to use her words to tell me what was wrong.

She simply signed to me, "People stare."

I froze -- my heart breaking and not knowing how to react. I took a moment to try to corral my emotions and pull together my thoughts.

I figured she didn't mean "lots of people" or "all people", but simply used poor sentence structure (which she almost always does). So, I asked her who stared at her.

"The ladies at the store."

I hadn't noticed anyone in particular staring at us that day at the first grocery store. It was early afternoon on a Thursday, a quiet time with few customers shopping or clerks restocking shelves. But, obviously, someone had been staring.

As we got our cart at the second store, I tried to compose myself a little better. I realized this was a "teachable moment", something mothers live for!

I asked her why she thought the ladies were staring. Brielle just shrugged her shoulders. I had hoped to get a suggestion from her, but without one, I certainly wasn't going to sugar coat the possibilities. I suggested that they might have been staring because she walks differently than other people and has to use a cloth (to wipe her wet chin from not being able to control her saliva).

Brielle just signed, "Maybe." She looked like she was pondering that possibility carefully.

I then told her I was sorry those ladies had stared at her and made her sad.

Brielle turned to me and flashed a huge grin at me and signed, "I OK, Mom." Two seconds later she asked if we needed lettuce this week since it was always her job to go pick out a head of iceberg lettuce and put it in the cart on her own.

The crisis was over. However, I was shaken for hours after it all happened turning it over and over again in my mind.

My heart breaks as I think about what she noticed and what she said. The innocence in this part of her existence is presumed lost. But my heart also swells knowing she is growing up and noticing the world around her in a different way.

PROLOGUE: When my older daughter, Ashley (18), came home from school I told her the story. Her eyes welled up with huge tears and we hugged. I'm not sure if it was harder to hear Brielle's comment and deal with that or watch her sister crying. Gosh, it's tough being a mom sometimes....