groundspeed

Midweek Mommy Question - Learning to Swim

 

Here are the boys today at a friend's pool. No pics of Toby bobbing around in floaties or anything because he refuses to wear them for more than a minute, so when he's in the pool he's holding onto me or being held out and encouraged to swim by me, but somehow he is always attached to me. (Makes it hard to take a picture of him.)

Both Kaden and Blue wore floaties before they knew how to swim and both Kaden and Blue started swimming without floaties the summer they were 3. In Kaden's case, he just started swimming without them. With Blue, he did a week of lessons and then we told him he wasn't allowed to wear his floaties anymore. Swimming is still harder for Blue because he gets tired. His body type has to work harder to stay afloat. Kaden, on the other hand, is naturally buoyant.

Now here's Toby, newly two, but since he won't wear floaties, I'm already wishing he could swim!  If I knew by next summer he'll be swimming then I can accept this year as that-ONE-summer-we-had-to-always-hold-Toby-in-the-pool. My niece and nephew are one and they are already doing swim lessons. If Toby refuses flotation devices should we making a concerted effort to teach him to swim this summer?

I sent out an email to a Fragile X listserv I'm part of that simply asked if their FX kids could swim and if so, what age did they start?  Of the five or so responses I've gotten they range from kids being able to swim easily at two to a twenty year old who still doesn't swim. Which pretty much tells me, it's just like with "typical" kids - they're all different. 

How about you - how did you get your kids to start swimming? How old were they?

Oh, and here's a shot from today of Toby out of the water:

Kickin' Off Summer

Straight from Blue's graduation on Friday we drove across the state to Lehigh Acres to Poppy's.

Originally Kevin was supposed to do a Bahamas flight on Saturday so I figured this would get us out of the house while he was gone.  Kevin's flight got moved to Friday, but it was just as well we left him to some "man time" because he cleaned and reorganized the garage and changed the oil in his car.  

Meanwhile we just hung out at Poppy's, rode in his golf cart, and then on Saturday I had Toby's two year pictures taken and we went out to lunch before heading home.  Yesterday I posted my favorite.  Here's Kevin's:


This week the boys don't have that much going on but the next week Blue and Kaden are in VBS and almost every week thereafter Kaden or Blue or both Kaden and Blue have a camp to go to. (It's going to be a summer of chauffeuring for me.)

And now that Kaden got his summer buzz (yesterday) he really is ready for summer:

Too Cute

Because when my little guy gives these kinds of smiles it makes it really, really hard to choose which pictures to buy.

We did Toby's two-year photos on Saturday morning and I miraculously chose only four poses out of about 100. Because of how they do their packaging, I still have way too many prints, so if you'd like to wallpaper a small room with Toby's face just let me know and I'll pass some on to you.

Moving On Up

The had a graduation ceremony at Blue's preschool on Friday.  The PreKers and Kindergartners were dressed in a caps and gowns, but Blue's "3's" class were just instructed to dress nicely. 

He was still proud:

(This was after we went to lunch, just before heading off to his school.)

They sang songs:


They got diplomas:

They ate cake and drank juice.

It was fun to celebrate Blue. It was a little rough because the ceremony was smack in the middle of Toby's nap time, but we survived.

Now Blue is ready for summer!

Oh - so is Kaden, Friday was his last day too.  My oldest is ready for 2nd grade. Am I old enough to have a boy in 2nd grade?! 

Friday Fragile X Links

Article Published Yesterday: Fragile X Protein Acts as Toggle Switch in Brain Cells

"New" (to my list) of Fragile X blogs: 

A Day at a Time - Scroll down for articles about drug trials especially if my post from this am sparked your interest in this.

The Other Lion: A single FX Mom (yup, she's got the full mutation too) and her cutie FX boy.

FXS  Girl, SLP Mom: She hasn't posted in awhile but I'm super interested in the FX/SLP focus. I hope it gets more active!

Happy Reading.

The In Between

I've told my there and back again tales for Toby's NC trip, but what about the in between?

We were there for a brain study with The Carolina Institute of Brain Developmental Disabilities.  The study is of infants ages 6 months, 1 year, and 2 years. They do behavioral and developmental assessments by meeting with the child and do a series of play-time tests and analysis. For us, this all happened last Monday, and in spite of the messed up sleep from traveling, Toby was at his best. There's also a phone questionnaire I did before we left and multiple written questionnaires I still need to do. There was an eye tracking test, and then the main component is the brain MRI. They schedule two attempts for this - once at the child's usual nap time and once at the child's usual bed time.

I can't remember how we found out about this study, but we joined up last year when Toby was one. I'm all about contributing to Fragile X research. Can't help it, folks. Part of me figures we will someday be building an efficiency apartment on our lot (which will have to be a bigger lot than where we currently live) for an adult Toby who will always be somewhat dependent on us, and another part of me thinks they will figure out this maddening syndrome, cure it, and Toby will go on to be the first U.S. President born with a mental impairment. (Oops, I guess I left that wide open for jokes about the president you don't like.) We can't get anywhere near that latter possibility without lots of research still happening. 

But both last year and this year we never got the MRI. They attempt to do it on the little ones while they are naturally asleep, no sedation, and I'm told usually have success with this. Not so with Toby.

This year I found it incredible enough that I got him to go to sleep within about fifteen minutes of laying him down because my guy is all about playing in bed, sometimes for hours.

So I got Toby to sleep. Yay! And I got Toby to sleep on the MRI table. Yay! But I couldn't ever get Toby turned over on the MRI table. Boo! Once, after twenty minutes of slowly, slowly readjusting Toby, the assistant had him all the way on his back and all she had to do was adjust Toby's head and that stinker woke right on up.

Without the MRIs I'm not sure what Toby has contributed to this study. (Sigh.)

Then there's what we've gotten out of the study:

* Reports of the analysis which help us know where Toby is developmentally. (Behind in most areas, but not severely behind. This is not news. ) 

* Comparisons of the analysis from year to year.  (Toby is progressing at the same rate.  Last time he tested to be a few months behind age appropriate abilities for a one-year-old.  This year he tested a few months behind age appropriate abilities for a two-year-old.)

* Being connected to more people in the Fragile X community.  (I want Toby to meet and have face time with experts in this field. Down the road, if we face greater hurdles I will go back to these people with my questions.)

* An Autism Analysis. (They do not see Toby as being on the Autism spectrum even though as many as 30 percent of kids with Fragile X also have autism. I once wrote about that here.)

In the end, was it worth all the hassle?

I'm not sure. Because I'm not sure how much we contributed and it was a whole lotta disruption for Toby when nothing we learned was exactly news. They often recommend services to families they work with, but we have long been getting Toby such services. So in terms of what we gained, probably not, but in terms of what they gained, I have no way to know.

Will I have Toby do another study?

I'm not sure about that either, but I'm trying to stay on top of these things. There are currently 38 Fragile X related drug trials listed on ClinicalTrials.gov. Toby is too young for all of them, but I'm just keeping tabs... 

... considering and weighing every opportunity for my adorable little guy.  

That's what parents do.

Part Two of Toby and Faydra's Travel Woes

Seriously, Dante totally should have created a level of hell where the torture was to fly somewhere with a toddler.

Ok, here's our coming home story:

Tuesday, our come-home travel day was supposed to be low-key.  We didn’t fly out till almost 3pm.  Toby and I got up, went down for breakfast at the hotel around 8am, swam at the pool, returned to our room so I could shower and he could watch Mickey Mouse Clubhouse, packed up, and checked out. All by 10am. 

Then we went to a botanical garden.

(Also, see Swamp Milkweed picture below.) 

Next we made a stop at a store we don’t have locally to buy Kevin’s Father’s Day present.  (Name of the store would be a possible giveaway.) Then we had lunch at P.F. Changs. All by 12:15pm. 

We had over two hours and the airport was only about ten minutes away, but I needed to top off the rental car’s tank and there was the whole return-the-rental-car process still ahead of me, and then there’s the whole-traveling-with-a-toddler factor… We got going.

I gassed up but the pump wasn’t working right so I only got in a few gallons. I then realized Toby had pooped. I decided to lay him in the backseat to change him rather than take him into the gas station bathroom which probably wouldn’t have a changing table anything. Quickly I realized we were talking a lot of poop. 

Down to the socks lots of poop.

Half a container of wipes later I had Toby cleaned, the car cleaned, and the straps of the car seat all cleaned. Toby was in a new outfit. His socks had been trashed.  I should have probably trashed his shorts too but they happened to be a pair I really liked so instead I tucked those in a plastic bag and stuffed them in my suitcase. Woe to the TSA employee who decided to check my bag.

Oh, and if you ever find yourself renting a car from the Enterprise at RDU and you end up with a white Chevy Malibu, maybe don’t sit in the backseat driver side. Just a friendly tip.  (I did my best, but still.)

I needed more gas but this gas station didn’t have Cheerwine so I decided to go up an exit and try again. 

I topped off the tank. Struck out on the Cheerwine again. (I thought I was in North Carolina?!) And I changed ANOTHER poopy diaper. This one was a small one. This one made me feel confident that we’d gotten it all taken care of before our flight.

We arrived in plenty of time. Too much time. Toby was not interested in watching a video on my computer. He was no longer interested in eating snacks or reading books. He wanted to run around. He screamed and finally I let him run around.  Me chasing Toby and trying to keep him within a comfortable range of our luggage and not get swallowed by the group… not my idea of fun but at least he wasn’t screaming.

We boarded and I plane-side check my carry-on sized suitcase and the stroller just as I’d done in Orlando. I was very careful about measuring my liquids and following all the TSA rules so I wouldn’t have to check bags. We get on the plane and waited. 

And waited. 

And waited.

But mostly Toby was being ok. He was watching out the window and occasionally saying, “truck.” 

Then, he looked at me and said, “poop.”

And I looked at him and said, “Oh no you didn’t.”

I started to think. I thought Murphy’s Law says if I get up to take him to the bathroom the plane will begin to taxi at exactly that moment. I wonder if there will even be any room to change his diaper in an airplane bathroom. But surely all the businessmen seated in the rows around me didn’t need me changing Toby there in the seat.

And as I thought about these things, deliberating just a moment longer, Toby reached into his diaper, scooped a good handful, and held the poop in the air as if to say, “Oh yes! I did!”

My arm shot up and I hit the call-an-attendant button. She came quickly.

“I’ve got a nasty diaper and I’m going to need a plastic bag,” I said.

She returned quickly with a trash bag and a handful of paper towels.  I mentally apologized to all the businessmen around me but I set to work right there. It was another doozy. I used the paper towels and all but two of my wipes. This time the shorts got trashed. 

Toby, all cleaned, wearing nothing but a diaper and a t-shirt lasted another five minutes and then lost it. I couldn’t blame him. It was late afternoon (couldn’t say the exact time, still being phoneless) and there had been zero napage.  But he arched back and scooted out of his seat belt just as the plane started to taxi. I attempted to get him back in his seat but no way. No how. Lots of thrashing ensued.  So I held him as tightly to my body as I could and by the time we were in the air he was sound asleep.

I pulled out my book.  He slept and I read for the next hour. 

Excellent. 

Except the flight was an hour and twenty minutes, and when he woke up he was not happy.  At all. 

Another mental apology to the businessmen. My boy can be really, really loud.

He didn’t want the cracker I offered.  Smacked it away. Juice? Slammed it at the ground.  Book?  Ditto. 

I got his baby and said, “Fine. I’ll read to Baby.”  Toby kept screaming.

I said, “Baby wants the cracker,” and proceeded to pretend to feed Baby.  This got Toby’s interest.  He would watch a second, scream a few seconds, watch a second.  When Baby got juice, Toby decided he wanted some too. Then Toby took a turn feeding Baby crackers and helping himself to bites too. The captain promised descent and I held Baby up to the window and announced all the things she could see.  Toby was very interested. Thank goodness for Baby.

Get off the plane. Get the stroller. Stroller was all bent out of shape. After much bending and forcing, an attendant got it to open and hold in place. OK, now where was my suitcase? At baggage claim. 

Um, what? 

If they had told me they would send it to baggage claim why didn’t I just schlep it onto the plane with me?  It had always been my intention to avoid baggage claim! 

I processed this news and realized at about the same just how annoying this task would be. For whatever reason, I flew out on Delta but back on Southwest. Not only did I have to go to baggage claim but I had to go to “A” side of the airport to do it, then, I had to carry everything back across the airport to the “B” side where my battery-dead van awaited me.

Yes, I had left the dome light on.  Yes, the battery was dead.

I went to the emergency phone in my aisle and called for assistance. The phone was barely working and I had to yell into the box. Thankfully this didn’t make Toby cry. I went back to the van and my cell phone, which hadn’t been used for the past two days had full battery (imagine that!) so I chatted with Kevin for about 15 minutes while Toby played around in the van. I hung up with Kevin and waited another five minutes or so and decided to call again. This time I walked to the next aisle over, but this call box wasn’t working at all. I walked in the other direction to the next phone. It dialed. I heard, “Hello?” I started talking. I heard, “Hello?” and then dial tone. Two hellos? That’s it for an emergency phone?  Thank goodness I wasn’t being mugged. 

I walked back to the sucky phone that worked best and called again, explaining/yelling that I’d waited about a half hour. Supposedly someone was on her way. Toby and I waited another twenty minutes and I contemplated calling again. I carried Toby around the parking garage because he was over playing in the van and up pulled the assistance truck so I hustled back. It took five minutes and I was road ready but as soon as my van came on, its alarm sounded.  Cue Toby screaming.

The drive back went well enough until about thirty minutes from home Toby was done. He just couldn’t make it an entire leg of any trip. I ended a phone conversation because I couldn’t hear and then started singing because this is the best way to get Toby out of a car funk.

We sang our way home.

Hell (A.k.a. Flying with Toddlers)

Part One – Departing

Last night as I awaited airport parking garage assistance to jump my van, I told Kevin on the phone, “If I weren’t me, I wouldn’t travel with me.”

The thing is, I USED to be a great traveler. With a copy of Let’s Go (insert any country here) in hand, I was set. I’d do anything the guidebook said, and it always worked out. Stand around in the Prague train station and wait for a person to approach you with pictures of his apartment and that’s where you stay? Sure – done it!  Accept that all Dublin youth hostels are gross, suck it up, and just pick one already? Yes! And I escaped without any communicable diseases!

But then I became an adult. With kids. My standards grew and the little people I’ve had in tow need a whole buncha crap but carry none of it themselves. Oh yes, they add soooooo many wrinkles to the travel equation not the least of which is the fact that they need constant entertainment and there goes my chance to read, my favorite traveling pastime. (Enter undercurrent of resentment which doesn’t help things.)

There was that time when Kaden was three and our trip started with the gas pump over fueling and leaving a lake of gasoline under the car where Kaden sat strapped into the automobile-now-death-trap.  Then on the way to Dallas I got pulled over, was told to get out of my vehicle and ended up getting bit up by ants. And then we went to the WRONG AIRPORT. Awesome!

There was last year when one-year-old Toby and I went to North Carolina and our flight got delayed THREE HOURS, so the perfectly timed flight I had which was going to put us at the hotel right at bedtime, instead had us boarding the plane right at bedtime. I had a one year old screaming, pulling at my clothes, yanking off my necklace and fighting me every inch of the way as we boarded and I struggled to carry his buncha crap, show boarding passes, and not cuss out all of my fellow passengers and airport attendants who were doing zilcho to help me. I still shudder when I think about that flight.

Now let's talk about last Sunday.

This year Toby and I headed to the Orlando airport straight from church. We had just enough time to get in, eat a late lunch at the airport, and board, IF everything went smoothly.  And why shouldn’t it? I had a snack and milk waiting in a cooler in the car for the ride to Orlando to tide Toby over until our lunch and then he was going to fall asleep and take his nap because Interstate = Toby’s Ambien.

That was the plan anyway.

Toby ate his snack. Toby drank his milk.  Toby hung out happily for another 20 minutes or so.  Toby started screaming.  Ok, I could give this ten minutes or so, then he’d be out, I figured.  Usually he falls asleep easily while in the car, but he’s fought it before so no big deal.  Ten minutes passed… Still screaming.  I put in a video. (Yes, I do this while driving. The DVD player in the van is on the ground behind the driver’s seat, so it’s mostly just reaching around and believe me, I know those buttons by feel.)  But it was only a half hour video and when it ended we still had 30 minutes before we were parked. Toby resumed screaming. We arrived in good time, but already, I was way frazzled.

So I am trying to unload our stuff and get Toby in his umbrella stroller QUICKLY to get him QUIET which can only happen once I am pushing him and he has new things to see. Unfortunately quick, in my case, does not equal efficient.  Just as I’ve walked to the end of my parking row and I’m about to enter the elevator room I think, did I turn off the dome light when I was looked for the mounting piece of my GPS? (Which, btw, I never found, so I drove around NC with my GPS in one hand , steering wheel in the other.) But it would be a long walk back and I figured I was being paranoid. Two days later I would learn this was the WRONG DECISION.

It wasn’t until after we’d gotten our boarding passes and I’d peed that I realized I’d left my cell phone in the van.

I had to decide between going back for my phone and eating lunch.  I was stressing about this decision because forgoing lunch could mean for a miserable flight with a kid who could only get so full on the Cheerios and fruit bars I had packed. But forgoing my phone? For the entire trip? 

The novelty of being in the stroller was already wearing off for Toby and he was getting fussy again. I chose lunch and I chose Sbarro for its short line as I was under the optimistic delusion that maybe we could eat quickly and still go get my phone.  (I was thinking this, mind you, having no idea what time it was, because my phone is how I tell time.)  I got some ziti and a big ‘ol bottle of water and then I had the tricky task of evolving a third hand to carry the tray because I needed one hand to pull the suitcase (on which was balanced another bag) and one hand to push the stroller.  That left zero hands to carry a food tray. I looked around and all the nearest tables were taken and I wasn't comfortable with leaving something behind and making two trips, so I kinda sorta managed the balancing act with the tray braced between my body and the top of the stroller. This was fine until we got half-way to the empty table and down bounced the big ‘ol water bottle onto Toby’s head. 

More screaming. 

Finally we were seated.  Toby got calmed by a banana stored in my purse for just such an emergency. After which, I got ready to feed him ziti but… no fork.  Luckily a cleaning person walked by and I put on my most desperate face and asked if she could get me a fork.  She shook her head no. I banked on the fact that she didn’t speak English and wasn’t just being rude. I started a spectacular game of charades where I mimed the absence of my fork, indicated how far away the forks are, and pointed to Toby.  She got me a fork. 

By now I'd accepted that, even though I had no idea what time it was, there was no way we had time to go back and get my phone.  Somehow this acceptance was comforting.  We could now just eat, worry free.  About this time a dad and his daughter, who looked to be about four, approached the table behind me. His drink crashed over splashed all over my legs. I was not mad. It was just him and the little girl. For such traveling companions I had all the patience in the world.

The ziti was awful. Flavorless and cold. But did not have time to do anything about this, and Toby didn't seem to care. Mostly I was just disappointed that Sbarro had proven wrong something I’ve always believed: even bad pasta is good-enough pasta. Not this time.

Then we experienced an upturn in our luck…

Going through security, the lady behind me offered to hold Toby while I folded his stroller. I smiled and said, “I don’t think he’ll let you.”  The smart woman then proceeded to break down my stroller and put it up on the scanning belt for me. Finally, someone nice! 

We got to our gate as they began boarding. We boarded. We left on time. Toby, in the window seat was entertained by take-off. Toby, who never napped, opted for the slap happy tired behavior instead of the grumpy, screamy tired behavior.  Everything was hilarious. He bouncined off the seat and then back up in his seat. We went through every snack, every book, every song in my repertoire of kids' songs. I was exhausted, but we made it. We got our rental car and Toby promptly fell asleep.  At 6pm. Thus screwing up dinner time and bed time. 

Typical.

When traveling with a toddler there is little that can be planned. There is only the ability to pack the maximum amount of "tricks" one can carry and... wing it.

Toby pooped in the tub that night and didn't fall asleep till almost 11pm.  

An appropriate end to such a day, don'tcha think?

Swamp Milkweed

I like that something with the words "swamp" and "weed" in its name can be so beautiful.

Toby and I spent a little time at the NC Botanical Garden at Chapel Hill yesterday morning before flying out. I'll write more about our trip if I ever recover, but I'll warn you in advance it's a story that involves a lot of poop in a lot of places, so for now let's just look at the pretty milkweed, shall we?

Motor Boat

On Saturday we attended the World Ocean Activities at the St Lucie Marine Center in Ft. Pierce. We'd never been before and it had some nice aquariums and on this day, gift bags for the first 200 kids (which we got) and all sorts of crafts and activities set up throughout and outside.  

In this picture Blue is at some sort of station that was supposed to teach about wind/sails, but he never gave his boat a chance to sail he just kept zooming it back and forth. The volunteer at this station looked up at me and said, "He's more of a motor boat type guy."  Two minutes of watching Blue play and this stranger had him totally pegged.