Twins in the Family

There are other twins in my family.
 

My mom's twin cousins Johnny and Jimmy

Note the interesting and incidental juxtaposition of the picture of Zack and AJ on the mantel behind them.

When our twins were born on Valentine's Day, my mom's Aunt Dorothy (Johnny and Jimmy's mother) was very excited to have more twins in the family.  She sent them these cute matching outfits!

AJ is on the left, Zack is the peanut on the right.  "Another fraction of an inch and I can bite him right on the ear."

Now, I'm not sure whether this counts as "running in the family," though, since my mom has a lot of cousins and only one set of twins.

I did have a Great Great Grandmother (Mary E. Burt) and Grandfather (Elijah Pinckney Horn) who among a total of seven children, also had twins born on Valentine's Day.

Eddie and Dicie, a boy and a girl, were born on February 14, 1890, in Leake County, Mississippi.  They both died young, so states my Family Tree Maker.  I can only imagine what it must have been like to carry and give birth to twins in 1890, not to mention losing four babies.

You Might Be an Autism Parent If -

I'm not much for Twitter.  The thing is, there is so much social media out there now, and yet still only 24 hours in a day.

Recently I did get some instruction from some lovely friends on how Twitter works.  So at least now I know what a hashtag is, and I know how to use one.

Dropping in on Twitter this past holiday weekend, I discovered a conversation going on with the hashtag #youmightbeanautismparentif.  So many of those posts (tweets?  I'm still somewhat twitter-illiterate) really touched my heart.

If you didn't see, it, here's what you do - even if you don't "do" Twitter, you can still go to www.twitter.com and do a search for #youmightbeanautismparentif, and you should get a list of all the posts that have been on that subject.

Here's some of the ones that jumped out at me, because I could have written them ((and many of them I retweeted (copied and sent them out to my followers), they were so good)):

Kristeen gordon
 #youmightbeanautismparentif your kid could give Houdini a run for his money.”. Amen!

YLMBreadlessannemarie
#youmightbeanautismparentif the christmas school vacation coming frightens you.

RT @PoopingRedGuy: #youmightbeanautismparentif u wonder how a kid that can't deal with any loud noises can be so freaking loud!

MumSpecialNeedsSpecial Needs Mum
#youmightbeanautismparentif your child congratulates himself by saying "good boy" every time he correctly places a puzzle piece!

Sweet_621Lynn
#youmightbeanautismparentif it breaks your heart to see toddlers at the mall laughing, babbling & engaging with their parents. #autism

Sweet_621Lynn
#youmightbeanautismparentif you take your family to a buffet but you know there's NOTHING there your #autistic kid will eat. - #autism

@KatieMollo: #YouMightBeAnAutismParentIf you would give up all your friends if it meant your child could have just one. <-- hits home

JasonoldfieldJason Oldfield
#youmightbeanautismparentif you have a therapy room as a living room

@manyhatsmommyMI:
#Youmightbeanautismparentif sometimes you feel guilty because your child talks quite a bit & u know so many who don't #aspergers #autism

You might remember that we in the Fragile X online community have already had this conversation - I posted about it last March, right here:  You Might Have a Child with Fragile X If.  So many characteristics of Fragile X and autism are exactly the same; I guess that's why at least 1/3 of people diagnosed with Fragile X also have autism.

Go to Many Hats Mommy to see other blog posts about this same topic.  And thanks to her for starting this conversation and connecting so many of us autism parents!

The way in which they are just like other kids....

All three of my kids, the typical and the FX-ers, have something in common with all other children.

None of them pay any attention to me when I tell them to do something, or to stop doing something, no matter how many times I say it.  I have to start yelling, raising my voice to an unholy level that scares dogs and threatens to break glass, and get all bug-eyed and wave my arms around like a manic, before anyone will stop what they are doing and look over at me.   Then they look at me like I just sprouted a second head, and Aliza will say (and the boys just give me a look that says)

"Geez.  You don't have to scream."

See this looks all cute and cuddly and sweet, but Zack is actually biting AJ on the shoulder here.  It's all fun and games until someone is bleeding.

Top 10 Things I'm Thankful for This Thanksgiving

1.  My fantastically fun daughter Aliza and my sweet, loving twin boys Zack and AJ.

2.  My parents and inlaws and their endless supply of love and affection for their grandchildren.  My parents have brought the boys and I to Chicago 3 times in the last 2 months, and Mark's dad helps take care of Aliza back home when we are away.  I couldn't be the great parent I am without their support.

3.  Pumpkin spice lattes, pumpkin pie blizzards, and plain old pumpkin pie.

4.  The Green Bay Packers and their undefeated season, so far.*

5.  My husband - loving, thoughtful, a rock of support for me, and on top of all that - a model father.  God was really looking out for me when he brought Mark into my life.

6.  Public places that have free Wi-Fi.

7.  Friends who understand me, share their great ideas, love my kiddos, and keep me laughing and sane.

8.  Every single person who has ever read this blog.

9.  Aunts, uncles, and cousins who welcome my kids on holidays; talking to them, playing with them, and generally just treating them like ordinary people.

10.  Modern therapies and drugs that give my kids a better chance of having an independent future.  I'm grateful to be raising children in 2011 and not in 1811.  Read Maureen Lang's books The Oak Leaves and On Sparrow Hill to get an idea of what it might have been like to raise a child with Fragile X a couple of hundred years ago.

Hope you all had a wonderful Thanksgiving!

*Yep, I'm a Packer fan.  Sorry if that is a problem.  I'm a little defensive about it, which comes from years of rooting for the Packers while living in Viking country.

A Quick Shot

We discovered something important this morning.  Zack is not allergic to penicillin.

He's got strep for the second time in two weeks.  Four days after finishing up the first antibiotic, he spiked a fever again, and one of the gooiest noses I've ever seen.  He walked around with the "sick" look.  You know - eyes half closed, mouth hanging open.  He didn't have much of an appetite, and that's not like him.  He was sleeping in every morning and that is definitely not like him.

So he took a trip to urgent care this morning, because tomorrow morning we leave for our fourth trip to Chicago and I knew if he needed to be back on some antibiotics, he'd better get started or this would be a miserable trip.

So since he was having his second bout of Strep in two weeks and had just gotten off an antibiotic that apparently didn't do its job, the urgent care doctor decided to give him a shot of penicillin.

Good grief, these kids have been sick a lot this fall.

I like this idea of getting all the medicine done in one quick shot.  Literally.  Ten days of holding Zack down, twice daily, so I can squirt the "pink" (what he and AJ call amoxycillin) into his mouth has not been pleasant for any of us.

By mid-afternoon today he barely had a fever, and he'd pretty much bounced back.  Literally, he was bouncing.

This penicillin is awesome stuff.  I wonder if I can get them to cure all my kids' ills with a quick shot from now on.

Was that it?

Remember how I've been waiting for a "wow" moment, during this drug trial?  Something that would make me think this drug trial is working?

I might have had it this week.  AJ did something that made me say "wow."

Now, it didn't make me say "WOW!"  Just "wow."

What happened was, I was cleaning out a cabinet of games and toys this week, and I'd left a box of animal stencil cards (Usborne, we love them by the way!) out on the floor.  (That's how I clean.  Some things get put away, some things get thrown away, and some things just get left out on the floor if I haven't decided what to do with it yet.  That's how I roll.)

Anyway AJ found it, picked it up, looked it over, and promptly ripped the back off the box.  And I ran over to him yelling "No, don't rip that up!"

And AJ handed it to me and said, "Sorry."

"Sorry."  I don't think he's ever said sorry to me before without being prompted ("AJ, say 'sorry.'")

So was that it?

It definitely made Aliza and I both sit up and look over at him in amazement.

Before this, though, I would have sworn they were both on the placebo.  This past weekend we tested them with our annual trip to see Santa, something that historically both boys have a terrible time with.

This year was no different.

Mark works to keep them from escaping while we wait in a short line.

This one, though, is all set to see Santa, list in hand.

Trying to get a good picture of Santa with the kids.  Well, not necessarily a good picture.  We'd settle for something where everyone in the shot is actually facing the camera.

This is about as good as it was going to get.

A lot of parents of little Fragile X kids don't do the Santa thing.  It's really hard for them, being forced to get up close and personal with this odd looking stranger.  And often they don't "get" Christmas and Santa and the whole thing.

But we have always done it.  Every year.  It's a bit of a tradition for us.  It's important to me to try, every year, to show the kids the magic of Santa Claus.  And this man, this Santa - oh, he's special.  He remembers us.  He remembers that the boys have a very tough time and more importantly, he remembers Aliza, and what a superstar big sister she is.  And while the boys chew, chew, chew on their chew toys and obsess and panic and scramble to get away, Aliza stares at Santa, with stars in her eyes.  And that makes it worth everything.

 

Thank goodness, we're back home, watching Little Einsteins.  Standing on your head makes it look so much better.

AJ Reading - A Short Video

Here's a short video showing AJ reading the TV screen list of Little Einstein episodes.  I'm not that close to him because I didn't want him to notice I was recording him.  He gets camera shy.

It ends abruptly, when he comes around to see what I'm doing with the iPad......

Gabby Knows

Gabrielle Giffords knows what it's like to be nonverbal.

She has firsthand knowledge of how frustrating life is when you can't communicate.

I haven't read the book her husband wrote, that just came out last week.  I just read the excerpts in People magazine.  But a few words and phrases just jumped off the pages at me.

"...until Gabby was injured, I'd never once considered how disabling it is to not be able to speak."

This is the case for most of us.  I don't think any of us who haven't experienced it can consider fully what it would be like not to be able to speak the words that are in your head.  Gabby knows.  And Mark has had reason to consider it.

"If people can't ask questions, it's not always easy to have a conversation with them.  You don't realize that until you spend your life with someone unable to ask a question."

Think about how much mental effort goes into asking a question.  The process.  You have to wonder something.  You have to have the forethought to realize there is something you don't know.  Then you have to be able to formulate that thought into a phrase made up of words that will induce the other person to tell you what you are wondering.  It's complicated brain activity.

"She had tried to speak and couldn't.  She had just figured out that she was trapped.  Trapped inside herself.  Her eyes were as wide open as I'd ever seen them and the look on her face was one of absolute fear.  I could tell what she was thinking: that this was what her life would be like from now on, that she'd never be able to communicate even the simplest word."

These guys know.  Actually, they don't really comprehend it the way Gabby does, because it's all they've ever known.  Every day they get better at communicating, though.  They make requests, but I'm not sure that's the same as asking questions.  It's not the same as wondering.  Maybe it's a baby step toward wondering.

I guess I just have a newfound respect for my ability to communicate.  Everything -- all the workings of our bodies and minds that are normal, typical -- we take it all for granted.  The fact that most of us are able to communicate -- to think of questions, pose them and answer them, is such a miracle of the human brain.

STX209 Update: 7 Weeks and 4 Days

Well, we've been both home and healthy now, for almost a whole week.  Finally, we've been able to stay in a routine for a few days, and we are noticing the boys are calmer and happier.

I can't decide whether to attribute that to the return to a predictable routine, or the trial medication.

I'm trying not to see this through rose-colored glasses.  I'm trying to be realistic.

Zack is definitely calmer though, in the last week.  He bounces a little bit less.  He sits and lays down more.  And not because he has a fever.

And he talks much more.  Both of them do.

I was demonstrating to my parents and to one of our therapists how both boys can read the TV screen, when I bring up the menu of our DVR recorded Little Einstein episodes.  I'll highlight one and ask

"What's this one?"

And both boys can tell me.

"Halloween."

For awhile, neither of them would say what the episode was, unless I asked them to.  But this morning both of them were watching me scroll through, shouting out which ones they wanted to see. 

"Sleeping Bassoon!"
"Good Knight Bad Knight!"
"Glass Slipper Ball!"
"Jump for Joey!"

Typically for twins and siblings, they could not agree on one.  But it was astonishing, to hear them shouting out words, trying to drown each other out!

The past couple of days AJ has been so happy.  He just smiles all the time, and chatters to himself.

I don't know.  Some of that might be a result of STX209.

But I'm still waiting for that "wow" moment.  The moment when one of them does something that is so stunning, we all stop and stare, jaws dropping to the floor.  The OMG moment.  Where we won't wonder if we are wearing rose-colored glasses.  We will know this stuff is magic.

Wordless Wednesday - I look good!

It's not pink - it's "salmon."  And I just happen to like butterflies....

This Great Idea I Have for a Class to Teach Acceptance

The antibullying movement is so strong lately.  And that is a great thing.  I am happy kids are being taught that mistreating each other won't be tolerated.

But I have an idea how to reduce the tendency for kids to pick on each other in the first place.



There ought to be a mandatory class for elementary students.  Something called Awareness and Acceptance.  Something to teach them to accept people that are different from them, in any way.  Something to show them how to interact and behave humanely.  To teach empathy.


I guess it would fall under the category of sociology or communication.  That, and maybe health.

And the special needs kids all need to be in that class.  Sitting right next to the typical kids.

No, not just next to them.  Interspersed through them.  No kid with special needs should be sitting next to another kid with special needs.

And maybe once a week, there's a seating rotation.  Something to ensure that everyone sits next to everyone else, at some point during the length of the class.

And it needs to be a whole semester long.  Not just a special all-school rally, one afternoon, in the gymnasium.  These kids need to be forced together in a classroom every single day for a whole semester so they really get to experience each other on a personal level.

Sort of like Partners in Policymaking is teaching me to be more aware and accepting.  Because it's not necessarily my fault I don't know how to talk to the woman in the wheelchair with such several cerebral palsy that she constantly makes odd body movements and is almost impossible to understand when she talks.  I've just never in my whole life been in such close proximity to people with those kind of disabilities.  At least not regularly, and often enough to get used to them.

I mean, I'm going to forgive myself for my uneasiness.  I think it's only natural to be uneasy around the unfamiliar.  But I'm working on it.  Every time I see her, I'm a little more comfortable with her.

It makes me wonder how different I'd be, if I'd grown up personally knowing some people with disabilities like her.

Which leads me to wonder how different our whole world would be, if everyone did.

The RIGHT Things to Say to Parents of Special Needs Kids

I was volunteering over at Aliza's school the other day during lunch, and I noticed that the special needs kids all sit together at one table.  There are a lot of deaf/hard of hearing kids and they were all signing to each other.

One girl was in a wheelchair.  She sat by herself for quite awhile.  There were other special needs kids at the table, but not right next to her.

After only two months, Partners in Policymaking has already changed how I see situations like this.  That girl in the wheelchair should have been sitting at one of the tables with all the "regular" kids.  Why should she have to sit at a table almost all alone?  Why couldn't she be pushed over to one of the other tables, where she might have a fighting chance at communicating with the typical kids?  And where the typical kids could get to know her?

This is exactly why the typical public doesn't know what to do or say around people with disabilities.  Because they've been segregated.

I've been thinking lately about how people (including myself before being a special needs parent,) act around people with disabilities.  What they say and how they behave.

There have been numerous blogs, articles, and Facebook statuses about what NOT to say to parents of kids with special needs.  Those sometimes painful comments made by usually kind-hearted and well-meaning friends and family and acquaintances.  You know the ones I'm taking about:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I don't know how you do it!  I could never do all that you do!

(As if you'd just return your own child to the hospital, if he or she had some special needs.  There are no takebacks.  None of us is doing all that we can for our kids because we are special.)

It could be worse, he/she could have ______________ .

(fill in the blank with whatever specific special need the child does not have.)

God won't give you more than you can handle.

(So God doesn't think much of your parenting skills, then huh, since he only gave you neurotypical children?  I know that is smart-alecky, and I'd never say that.  There just is no way to respond to that, because to me it feels like you're saying "buck up, you lazy bum.")

All he/she needs is a good spanking.
(No one has actually ever said this to me, but I know it's a common one.  Some people think children with behavior problems are just lacking the appropriate discipline.
You cannot punish away a disability.)

and my personal favorite.....

You are a saint!

(Right!  That's me!)

(ok those who know me personally, you can stop laughing now.  I mean it.  Now. It's not THAT funny.)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I know from personal experience that these phrases don't make most of us feel better.  I understand where you're coming from, though.  I know people are just trying to be nice and friendly and supportive.  10 years ago I'd probably have called myself a saint.

But now that I have some experience as a special needs mom, I'm going to do a little public service.  I'm going to provide a list of things that are not only Okay, but in fact are Fabulous, to say to a parent of special needs kids (or to their children).

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"How's the family?"

 (It's very simple.  Ask how things are going, and then take the time to listen to what I tell you.  Ask questions.  It's better to ask than not to ask, and risk me thinking you don't really give a crap.)

"I'd love to get the kids together for a playdate sometime."

(And then actually try to make that work.  It's not easy to fit in around our therapy schedule, but if you make the effort, I'll be so very appreciative.)

"__________ (insert child's name here) did so well today while we were together!  He/She did _________(insert examples of the things the child said or did that show progress).  And it was great to see him/her!"
(I love when you notice my kids' progress.  It shows that you pay attention to them and are aware.  I think sometimes you're afraid to notice the good things because it might amplify the bad or the "different".  Let me tell you, the bad/different is already amplified to me, 24/7, you can't make that any worse by pointing out the positives.)

"Hello, (insert child's name here).  How are you doing today?  Are you having fun?  It's so good to see you -- how about a high five?"

(Don't be scared of him.  Actually talk to the kid.  He may not respond appropriately.  He may not respond at all.  Don't that let disuade you, talk to him anyway.)

(And if he/she does respond appropriately, pounce on that with more attention and praise.)

It's pretty simple really.  Just don't ignore us.  Having children with a disability really shows you who your REAL friends are.  I'm fortunate to have some really, really good ones, as well as a close, supportive family.  In fact, this list of GOOD things to say is from real life - these are things my own friends and family have said or done at one point or another.

If you are cringing because you recall yourself saying the examples of what NOT to say..... it's okay.  Don't beat yourself up.  I understand the sentiment is more important than the words themselves, and that your hearts are in the right place.

But I also think that people don't say the right thing because they don't know what the right thing is.  People with disabilities have been isolated and segregated most of our lives.  Most of us just don't have experience in communicating and socializing with people who don't behave in ways we think are "normal."  I want to help bring us all together.

It's pretty simple.  Just

1.  ask questions,
2.  talk to us and to the kids,
3.  and point out the GOOD!

Halloween Thoughts

Judging from the joyful posts and comments I saw on Facebook, it seems like Halloween is a very popular holiday with the disabilities crowd.  Everyone seemed thrilled with how well their kids handled the dressing up and trick-or-treating.

I guess putting on a costume and pretending to be someone unique and special and very different is a great equalizer.  Wait, don't people with disabilities deal with being unique and special and different every day?

Maybe that's why they're so good at doing Halloween.

Like last year, Zack and AJ had a terrific time.

One thing that hasn't changed from last year is the lack of enthusiasm for candy.  Neither of our boys likes it.  No M&Ms, no KitKats, no Skittles, no Milk Duds. (We are actually thankful that they don't like candy, considering how much they also don't like to brush their teeth.)

They get candy anyway, and we manage to find ways to get rid of it.  Usually by way of my mouth.

One of our neighbors, though, planned ahead for our anti-candy guys.  She put aside the candy when she saw us coming, and got out a special Halloween treat for Zack and AJ.

How completely lucky and blessed are we?  SO very much.

Thank you so much, Sada, for all that you do to make our boys feel comfortable and included.