Birthday Blues, a Little

So, I started an online grad school program. And I work. In case you wondered what's been keeping me busy.

Sometimes I still can't believe there are two of them.

Tomorrow, the boys turn 10 years old though, and I feel the need to say something. I'm torn, because I want to be honest and pour my heart out, but I also want to be positive and uplifting, because being down doesn't help anyone. I hate it when I have to choose between truth and positivity.

Also there's the fact that my daughter is 12 now, and has access to the internet, and I know she looks at this blog (hi, sweetheart!). I want her to feel happy and positive about her brothers, and not feel the sadness I sometimes do. (It's really only sometimes. 99 days out of 100 I don't even think about it.)

Tomorrow the boys turn 10, and I spend part of the afternoon hunting for presents for them. I got them both body pillows. That's something I know they'd like and get some use out of.  They also like nightlights and flashlights, and some books, and DVDs, as long as they are DVDs of some Nick Jr. show, or the Wiggles. AJ loves Yo Gabba Gabba but Zack almost never lets him watch it. Zack knows how to run the remote now, so he usually decides what we are all going to watch.

AJ likes chocolate chip cookies, so I got a giant cookie for them.  Zack won't eat it, but Zack doesn't eat any sweets except Honeycomb and other cereals.  Once he ate Oreos, but now when I get them for him, he is uninterested. He likes Puff Corn. Can't really make a birthday cake out of that. So Zack is going to share AJ's big cookie.

For a couple of weeks now Zack has been asking for "Pa Wiggles." I don't know what that is. I have shown him a bunch of Wiggles videos we could order on iTunes, to see if one of them is Pa Wiggles, but he didn't point anything out specifically. He keeps looking up where the take-out menus are in the kitchen, because he knows we used to hide movies there, but there's none there now. No Pa Wiggles. I found some old Wiggles videos on Ebay and ordered them. Hopefully one of them is Pa Wiggles. (That's not Pa, as in, Ma and Pa, that's Puh. PuhWiggles.)

Everything Zack says is an abbreviation or an approximation of what he really wants to say, and some of the things he says are just indecipherable.

Zack still likes pink things. His most recent fixation was a pair of American Girl pants that he would try and shove over his arm. So for Christmas we got him a couple of pink shirts. He doesn't care about either one of them. He played with those pink American Girl pants until they were ripped.

AJ is very outgoing and has quite a few interests. He's easier to shop for. His very favorite thing is his red shirt that says "Radical," He wears it every day. I mean, every day after school he comes home and puts it on, and wears it every weekend. Luckily because I have twins, I have two of the "Radical" shirts, so we can alternate a little.

I saw on Facebook that someone got their son with Fragile X a stamp of their name - because they have such a hard time writing their names, it's fun to have that stamp and put their names on things. I don't know if the boys will care about that or not.  AJ might. It was worth a try, though, so I ordered them personalized name stamps.

Everybody has been asking me what to get them for their birthday. It's because they are impossible to shop for. They aren't like other 10-year-olds, they are more like three-year-olds with OCD. It's hard to come up with things, because Zack really isn't interested in anything that isn't on his iPad. Literally, everything he does, he does just to get his iPad back.

Birthdays are always hard. Ordinary days are great. They are sweet, funny little guys.  Every year on their birthday, though, the wide gap between them and other little boys their age gets more and more obvious. As 10-year-olds, they should be playing basketball like their sister, maybe on a traveling team that their dad coaches. They ought to be terrorizing the neighborhood on their bikes. They should be trying to convince me how much they both need a cell phone. It's no use ignoring this and not thinking about it. It's totally in-my-face, every birthday.

I want to be positive and say it gets easier, but some things never do. They've only been invited to one friend-birthday party, and it's another set of twins who are in their class, who are a little over a year younger than they are, and much higher functioning. AJ likes the birthday parties, Zack is totally overwhelmed.

I feel bad for feeling bad. Why can't I just accept them as they are? Why do I have to think about what they are not?

From last summer.

Their usual spot, and usual activity.

Birthdays are for Celebrating

Last week, AJ and Zachary turned 8.  I posted this photo on Facebook on their birthday.  It has always been one of my favorites.

 

 

The thing about getting a diagnosis like Fragile X for your children is, you forever see their youth in two sections - before you knew, and after.

This is Zack and AJ's 12 month photos.  This is just two months before we knew.

They were sitting up independently at 12 months, but that was about it.  No crawling, no pulling up on furniture, certainly no walking.  Zack could roll in different directions with some purpose, but that was the extent of their mobility.

I love their happy, huge smiles in these photos.  They had no idea they were developmentally delayed already, barely a year old.  Really, none of us had any idea of the permanence of it.  I still thought they'd catch up, at this point.

But while a little reminiscing on the part of the parents is probably inevitable, birthdays are ultimately for celebrating.  Every year on Zack and AJ's birthday we try to do something that is fun especially for them.  For the past couple of years we've gone to a small indoor waterpark just outside of the cities.  It's perfect for them and they always have a great time.

We haven't really had birthday parties for them, but this year we went a little more the traditional route.

We took them to Pump It Up.  They have individual rooms with inflatable slides, bouncy houses, and obstacle courses.  It's all brightly colored and they play fun music while kids jump and run around for a little over an hour, before settling down in a party room for snacks, cake, and presents.

For kids with sensory issues, it can be both a dream and a nightmare.  While they revel in the chance to jump, roll, slide, and climb, the other kids and the music can be too much input for them.

They do have a "sensory night" the third Monday of every month, but then too, it gets crowded.    I'm never quite sure how Zack in particular is going to react to being in a big crowd of boisterous kids.

With a few small provisions, we made Pump It Up into a great party location for the boys.  I told the party people that I didn't want to music playing.  We only invited the boys' cousins and a very few close friends, so it was never crowded.

And it was a lot of fun.

And the winner is Lexie, by an entire body length.

Zack had to take a break after awhile and sit with his iPad, but both boys really had a lot of fun.  It was just about as wonderful for them as I hoped it would be.  AJ sure did love that slide.

Mickey Mouse on the iPad, and on the cupcakes!

As is the case with many parties, Zack had to be the first to leave - Mark took him out to the car immediately after we'd opened the presents.  He was beyond done (overdone, even), and between Mark and I, we'd picked him up off the floor for the last time.

AJ was whiny, too, when it was all over.  "Do you want to go home?" I asked him.

"No," he answered.  "Slide?"

He was ready for another go!

We might have to try that sensory night, one of these days.  I underestimated their love for Pump it Up!

Presents They Like

We survived the birthday/Valentine's Day extravaganza.

My heart was a little heavy most of the day, possibly due to the amount of chocolate I dumped all over it.

It's dangerous that the boys' birthday happens to coincide with a chocolate holiday.  But anyway.

AJ opened a Wiggles video and held it high, yelling joyfully "WIGGLES!" 

Zack tried to take it from him, until Aliza and I got him interested in opening his own present.

And happiness abounded because both boys had a new video to trophy (yes, I just verbed this word) around the room, and that's about all they need to reach optimum joy.

Except then we broke out the big guns.  The big teddy.

I have been driving around with this teddy bear in the back of the van for about a month now because I wasn't sure where to hide it in the house.  So I strapped the boys in the van to pick up Aliza at school, and before we left I quick pulled it out of the van and ran inside, depositing Mr. Ted in the lazyboy. 

After returning home, Zack spotted him right away.

Yeah, he likes it.



Thank you to my friend Carolina and her children, who passed on Mr. Ted to Zack!  Zack is quite obsessed with it.  And, Aliza was wondering if you had another name for him?  We don't want to confuse him, if he's used to being called "Paddington" or "Pooh" or "Baloo" or "Corduroy" or "Fozzie" or something.

This morning the boys had a doctor appointment that included "labs."  Luckily the boys don't know that the word "labs" generally means a blood draw, so they were fairly compliant and happy throughout the appointment until the "lab" lady appeared, carrying her little tray of torture.

Much screaming and many tears later the blood draws were just a horrible memory.  And in the mail today, each boy got a musical birthday card from grandma and grandpa, which totally made up for the lab torture.

Happy Birthentine's Day

When your birthday is on Valentine's Day, you have to double celebrate.  It is after all, a day of love.  When you have twins born on Valentine's Day, you have to celebrate double time.  That's a lot of love, baby.  A lot of love.

We were graced with a little thaw yesterday so everyone went outside to enjoy the snow, before it turns into muddy slush.


"This is all a little too much for me."



This is the best one, I think.  Might have to turn this one into a header one of these days!



AJ, also known as the guy who doesn't need a mouth full of teeth to gnaw off the tops of all the sippy cups.



Yesterday we continued the tradition we started last year of taking Zack and AJ swimming for their birthday.  They don't like parties, cake, candles, singing, or games.  So we don't do the typical birthday things; they do love swimming, though, so we brought our little fishies back to their most natural habitat.

The sun was a little bright for Zack on the way there, and he doesn't wear sunglasses, but he improvised.

They apparently are going to continue into their 6th year much like their 5th, in showing utter fearlessness of the water.  Both of them prefer to be in up to their chins.



No birthday would be complete without a personal bag of Doritos.





A couple of times AJ was in up to his nostrils.  It didn't bother him, he sputtered a little, let me drag him back to where he could touch the bottom, and then bounced back over to where he barely could touch.

They went swimming and played in the snow on the same day.

More pictures and maybe video later of presents......