Remembering Grandma Marian

Today marks 17 years since my Grandma Marian passed away on September 11, 1992 after a long battle with cancer / leukemia. She was just 14 days shy of her 70th birthday.

Grandma Marian was a beautiful person - a devoted wife, mother, and grandmother. She and my mom taught me how to play Solitaire, and whenever we visited we'd pull out three decks of cards and play Triple Solitaire (it's way more fun than playing by yourself). She was one of the most selfless people I know, always thinking of others. She loved life and never let anything slow her down.

Meet Grandma Marian:

I took this as we waited with her at the airport, she was flying back home after visiting with us. I love her smile here, full of sparkle and spunk.

Grandma Marian and my mom

Aside from playing games, the three of us had fun shopping together, but mostly just hanging around chatting together.

Three generations - my mom, my grandma, and me

Grandma Marian and me, back in the day

Grandma Marian left this world the year before I was married, so my husband never got to meet her. Neither did my brother's wife. Nevertheless, I believe she was there in spirit to witness both of our weddings and the births of her great-grandchildren. I like to think she spent time hanging out with them in heaven before they were born. :)

Grandma - we love and miss you, and I know we'll see you again someday.






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Remembering Debora Maldonado

About a month ago, I signed up to write a tribute for one of the people who lost their lives on 9/11 as part of Project 2,996. The goal is to honor them by remembering their lives.

Meet Debora (Debbie) Maldonado. Nicknamed “Mouse” by her husband, Otelio, for her short stature, she was anything but timid. She is remembered as feisty and warm-hearted, a shopoholic who loved a bargain, a devoted wife, mother, daughter, sister, and friend.

Debbie, age 47, was born in Panama. Her family moved to the United States when she was about 5 years old. She earned an Associate of Science degree from CUNY Brooklyn College. She worked as an executive secretary at Marsh & McLennan for over 21 years, and before that worked at American Brands. Her office was in the north tower of the World Trade Center, although she was actually packed and scheduled to move back to MMC's midtown office sometime the week after 9/11.

Debbie called her sister, “Miss Miriam,” every day before lunch and visited her mother every Sunday. She and her husband were high school sweethearts, together since she was 14 years old. She struggled with infertility for 16 years before becoming pregnant with their daughter, Krystal. Two years later, their son Chris was born.

She was a woman who embraced life. Her sister recalls a conversation they had in August 2001 while Debbie and her children visited her in Miami. "You never know what’s going to happen tomorrow." When her sister asked, "What are you talking about?" Debbie responded, "I’m going to enjoy my life now."

My thoughts and prayers are with Debbie's loved ones today. We will never forget.

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Twins in the Womb

This is too funny :)







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Mondays in Motion #18: Pokemon

I remembered this month! It's the first Monday of the month, time to share a video for Mondays in Motion.

Since I missed last month, I'm sharing two (they're both short). The first one is Bearhug, with help from Cuddlebug, giving us a tutorial on Giratina, one of the newest Pokemon they had caught when this was filmed. Needless to say, they were excited because they'd been hoping to catch one for a while. At the time, they pronounced it "Grinta."



And just for some gratuitous cuteness (hehe) here is Cuddlebug telling me about a video he saw in which someone "evolves" (you know, like a Pokemon evolves) into a moose (apparently by putting their clothes on a toy moose, lol).



I realize my posts have a lot of Pokemon and trains in them, but that's what my kids are into... and that's putting it mildly ;).

What videos do you have to share today (or anytime this week)?









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Magic Marker Monday: Gordon

A couple of weeks ago, Bitty brought me his watercolors and put them in my hand. This is a rare request for him, usually he isn't particularly interested in artistic endeavors.

"Do you want to paint?"

"Pay"

"Do you want me to open this?"

"Opeh"

"What do you say?"

"Opeh... PWEEZ!"

I opened up the paints for him and found a little bowl and put a small amount of water in (the less to make a mess with, my dear, haha).

He did a few strokes with his paintbrush before he got bored. I put extra water on the paints to soften them up, because I think part of the problem was he wasn't getting much color onto his brush.



A little while later, I found this at the table:



The colors he used made it clear that he was painting a picture of Gordon (one of Thomas' buddies for those not steeped in the world of Thomas & Friends). I love how he knew what he wanted to paint and brought it over to use as a model :).



For more Magic Marker Monday, visit 5 Minutes for Special Needs.





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Autistic Teen Finds Inner Voice

Frog's Mom shared this on her blog and it is such an incredible story I wanted to share it here too.

Meet Carly, a teenage girl with autism. She is non-verbal and until age 11 had no way to really communicate with those around her. Then she started typing... and found a way to share her inner voice with the world. She and her family are amazing.



I think anyone who loves (and is loved by) someone with autism or sensory issues can learn something from Carly. You can check out Carly's blog at Carly's Voice.





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Baby Picture Sunday: Holding Hands

Today's theme for Baby Picture Sunday is "I wanna hold your hand." Time to share some shots of holding hands :).

There's the one in my header, of course, but you see that one every time you visit :). So here are some others that I found.

This is a fairly recent one, this is Bitty holding his grandma's hand on a walk.



And here are a couple of Cuddlebug and Bearhug holding hands as babies. Please forgive the poor quality on these... this is from back in the "olden days" before I had a digital camera!

Cuddlebug (left) and Bearhug, about 1 month old

In case you're wondering about the size difference, that is a result of Twin-to-twin Transfusion Syndrome (TTTS).

Cuddlebug (left) and Bearhug, about 5 months old

Lastly, here's one of me and Cuddlebug, taken in the NICU, doing our "preemie" version of hand-holding where they would wrap their little hands around my finger :).




Got some hand-holding pictures to share or want to see what others are sharing? Head on over to Who Says 8 is Enough.

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The silent treatment

Bearhug and Cuddlebug are quite verbal, and for that I am grateful. However, it is clear to me that while they may make it look effortless to the average observer, it does in fact take a fair amount of effort. I notice their words beginning to slur whenever they are tired or over-stimulated. Sometimes when it’s too much effort, they resort to hand signals and body language (pointing, nodding, etc.). And sometimes, all efforts to communicate break down.

This happened recently with Bearhug. A couple of weeks ago, he seemed upset after bathtime. He followed me around for a few minutes but wouldn’t talk to me when I asked him what was wrong. Having a just-bathed, squirmy Bitty to contend with (the boy who despises baths which makes bathtime a real treat), I shrugged and went about getting Bitty dried and dressed. I was about to head downstairs when I decided I’d better go check on Bearhug again first. I found him curled up on the floor next to his bed – still not dressed. A little concerned to find him like that, I asked him again what was wrong.

Silence.

I waited a few moments and asked again. More silence. I started trying to guess. Was he hungry? Thirsty? Tired? Cold? Not feeling well? Did his tummy hurt?

I paused after each question, looking for any sign of a response. There was none.

I noticed that he was directly under the air conditioner vent and asked him again if he was cold. Getting no response, I told him if he got dressed, he’d feel warmer. Still nothing.

I decided to take a chance that maybe that was it, and I pulled the comforter off the bed and put it on top of him. No response still. I gave up trying to talk to him and just laid down on the bed next to where he was. I figured eventually he’d have to get up, right? And I didn't want to leave him alone like that, when it seemed obvious that something was wrong even if I had no idea what it was.

Several minutes later, he got up and climbed into the bed next to me, bringing the blanket with him. He cuddled up to me, but was still silent. So was I.

A few more minutes passed, and he jumped up, seemingly back to his chipper self.

“Sorry, Mama,” he said.

“For what?”

“For not answering you, I was too cold to talk.”

“It’s ok. But next time you’ll be warmer if you get dressed right away.”

And with that, he was off to get dressed, and he was fine. We have these little episodes every now and then, sometimes with Cuddlebug too. (Bitty doesn’t go silent when he’s overwhelmed, he goes into meltdown mode). I wish I could read their minds on days like that, because the guessing can be frustrating, especially when I’m guessing wrong.

Actually it seems to be more frequent recently but I think it's because of all the "new" things going on - a new school year - with a new teacher, new classmates, new classroom, and new lunchtime - starting Scouts, etc. Things are slowly starting to settle down again as each of us gets accustomed to our new routines. Despite a few speedbumps, this is actually probably the smoothest transition we've had into a new school year - ever. Let's hope that's the start of a new trend ;).






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SOOC Saturday: Working together

The "big boys" all doing yardwork together:



while Little Bitty supervises ;)



For more SOOC Saturday, visit Slurping Life.





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Interpreting Bitty

Before Cuddlebug and Bearhug were diagnosed with autism, I had never heard of echolalia. Cuddlebug in particular had a habit of frequently repeating back the last thing we said, and except when it was obvious that his response didn't make sense, I just took it at face value as a response. (I learned the hard way that's not always a great idea, misinterpreting a response can lead to a meltdown!)

It wasn't until the pediatric neurologist evaluating the boys actually asked me if they answered yes/no questions that I realized they didn't. As a therapist later told me, it's easier to notice unusual behavior that is present than it is to notice "typical" behavior that is absent.

So after all these years I feel I understand echolalia a bit better, but I still struggle to interpret it sometimes. When Bitty repeats back something I just said, is he answering in the affirmative, or is he just repeating? Sometimes he'll repeat it back with a "no" in front of it and then I know he's answering in the negative.

Example:
Me: "Bitty, are you ready for a bath?"
Bitty: "No weh fo' baf!"

Me: "Whatcha doing?"
Bitty: "No wah-choo doo-in'" (translation: I'm too busy to talk to you right now, or something along those lines)

Other times it's not so obvious.

Me: "Would you like some cran?"
Bitty: "cwah"
(I pour him a cup of cranberry apple juice)
Bitty: "no cwah"
Me: "But you said you wanted cran"
Bitty: "you wah chwokka miwk?"
Me: "No... do YOU want chocolate milk?"
(a happy dance)
Bitty: "YYYESSS!"

He gets creative sometimes, repeating back questions I have asked him before, that he wants me to ask him again (like "you want chocolate milk?" or "you want your trains?" lol). I've noticed that when he's repeating, he can say all kinds of words, even sentences and entire dialogues. Like the Pledge of Allegiance. His words are clearer when he's repeating something too. His "spontaneous" speech is more often shorter (one word or a brief phrase) and harder to understand.

Sometimes there's a "delayed reaction" aspect too.

Friday, dh asked him what he did at school that day. He answered with the name of one of his teachers.

About 2-3 hours later, he was sitting with me on the couch with his drink and some trains. He pulled the cup from his mouth and said, to no one in particular, "house-keepee... bee-bags" (housekeeping, bean bags). Now, I'm pretty sure those are things they have / do at school (the "housekeeping" center at school was one of Cuddlebug's favorites at that age too), so I'm guessing that this was a delayed response to the question about what he did that day. Today he found a little bean bag in the toy box (long since forgotten) and was repeating what sounded like a game that they must have played at school with bean bags.

It's these repeated conversations that are starting to give us a greater glimpse into his days. It's almost like getting a tape-recording of a little snippet of his day, because he doesn't "narrate" it, he says it word for word as if he was back there again. His weekly class newsletter said they learned about boys vs. girls last week. I asked him, "are you a boy or a girl?" He answered, "a goowul" with a giggle. (he has a silly sense of humor). Then he started into what sounded like his teacher's instructions, "ith yo' a bowee, tushyo' fee'" (if you're a boy, touch your feet)... "ith yo' a goowul, tushyo' nose." He pretty much ignored me as he did this, not really engaging me so much as reliving what was apparently a fun activity :).

A year ago, his words were few and far between. That was about the time he finally started saying words here and there, before that time he was pretty much non-verbal. It was about a year ago that he finally said "mama" again after he stopped saying it when he regressed. Nine months ago, the only answer he gave to the question of what he did at school was the word "skoo-bus" even though he's never ridden the bus so I can only guess it was just something he associated with school.

He's come a long way in the past months and year. He's talking so much more now, and yet so much of what's going on in his mind remains a mystery. For example, I have no idea why he says, "May-bis" (Mavis, one of his trains) whenever he sees me heading to work or coming home from work. Is it an association because "Mama" and "Mavis" both start with the same letter? So does "Molly" but he never says that when he sees me? Does he think I look like Mavis? Gee, I hope not ;).

As K said recently, it's hard to really know what he knows and what he doesn't. He surprises us often, and I have no doubt that more surprises are in store :).





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