Do all special needs parents do this?

I read things like this, and I panic.

http://abclocal.go.com/kabc/story?section=news/health&id=8480328

This child with Fragile X started taking minocycline as a little baby and is now READING at age 4.  READING?!?!?!?!
Immediate panic seizes my heart.  I could have started my boys on minocycline as babies.  I've known they have Fragile X since they were 14 months old.  We could have started it the next day.

OMG, what have I done?  I missed the boat.  If a 4-year-old is reading after taking minocycline, my boys could be writing short stories by now.  They could be doing advanced algebra. 

Okay, they could at least be potty trained.

See?  Irrational thoughts overtake me.  I'm terrified that they key to "fixing" them is something that I bypassed.  That may be why I felt compelled to get involved in the drug trial.

Do other special needs parents do this?  Do we all watch for new treatments and promising medications?  Do we all panic that we didn't try the right medication soon enough and now our children are destined to lead unfulfilling lives?

I imagine a big room full of Fragile X families, where those who have been on minocycline are functional adults, and are shaking their heads and looking sympathetically at those families who didn't try it. 

I know, it's kind of ridiculous.  At least I'm not too dramatic, right?

See, I hear things like what this article says, and in my mind, if a 4-year-old with Fragile X is reading, that equals CURED.

When people tell me that their child is able to function better in public and talk more and be less anxious on the STX209 medication, to me, it's like they said CURED.  I knew it wasn't a cure.  In the front of my mind.  But in the back of my mind, my expectations soared.  I fantasized that we'd all be shocked at how dazzlingly advanced they were, on this trial med.

I'm not shocked.  I'm pleased.  But the changes aren't as mind-blowing as I'd expected.

There's reasons not to try minocycline yet.  I've heard you aren't supposed to give it to children until they are around 8 years old.  Until all their grown-up teeth come in.  Because if you take minocycline before all your grown up teeth come in, it'll turn them gray.  Not just a little grayish.  Totally, throughout the whole tooth, dark gray.  Noticeable, cannot-be-bleached gray.

So one might ask herself; what's the lesser evil?  Full mutation Fragile X, or gray teeth?

I didn't bother answering that question because it seemed like most of my fellow Fragile x parents were waiting until the grown-up teeth came in.  Or avoiding minocycline altogether, because it is an antibiotic, which taken long term can cause immune system problems and will kill all the good bacteria in your kids' stomaches.  Making them get sick more often.  Causing them lots of physical problems.

And above all else, it's not a CURE.  It's a medication that helps a lot of Fragile X patients.  Not 100% of them.  But many of them.

But, CRIPES!  READING!  She is excelling in at least one area of her development.

Not a day goes by that I don't argue with myself.  I'm never, ever sure we are doing the right thing.  I sure hope that boat doesn't sail away without us.

More iPad Apps

Awhile back, I reviewed some iPad apps that the kids enjoy.  We still love those, and we are discovering new ones all the time.  Here's a few more that the boys are loving right now:

Mr. Turkey is a really fun book that we downloaded around last Thanksgiving, but AJ still loves looking at it.  Everyone in this book is looking for Mr. Turkey, and on the last page you can upload a picture of your child and HE finds Mr. Turkey!  So cute!

Very cute, interactive book.  AJ sort of stims on the first couple of pages, over and over, but if I sit with him, I can make him sit through the rest of it.

Elephants Bath is another interactive book.  You can "play" with the toys on each page, including throwing a ball around and making sticks bang on a drum, there's a little butterfly on each page that you touch and it flies around, and on the page with the elephant in the bath, you can pop the bubbles!

Color Dots is so easy, and so fun.  When you start it, there's one dot, and it moves around the screen until you touch it.  Then there are two dots that move around, until you touch them.  Then three.  And so on.  At Christmastime, the dots became Christmas tree ornaments, which no one was as excited about as me.  But you know - it's the little things!

Somewhere I read something that recommended Letter School, and I wish I could remember where, so I could go back and thank them.  It encourages kids to draw the letters, which is something both my boys have such a hard time with - purposeful writing/drawing.  There are lots of apps to help with drawing/writing skills, but most of them move too slowly, or are too hard, or are just boring.  This one moves along quickly and rewards the child with fun little actions.  This was $2.99, I think, and totally worth it.

This feeds into our love of Dora and Diego - anything with recognizable characters and music is going to be a hit with my boys.  This is also an interactive book.  Each page has puzzle pieces to put in place. 

Buzzle is a great, free puzzle app.  Four detailed, bright pictures with specific items missing.  Those items appear one at a time in the upper right corner, and you just drag it down to the correct spot in the picture.  AJ loves it.

Little Puzzles Preschool Games is a great puzzle app too.  Simple photos of toys, vehicles, animals, and other things broken into just four pieces.  Drag the pieces together to form the picture.  AJ loves this one too. 

Oh, Injini.  Injini is so great, I am tempted to give it it's own post, all by itself.  It includes a variety of great activities; puzzles, matching cards, and line tracing.  There's a section with farm animals and when you select the sheep, a razor appears and you have to rub it all over the sheep, shearing it.  There's a bunch of eggs that you touch a few times to crack them, making little chicks appear.  There's a game called "Find It" where a drawer opens and you have to find an object.  It starts with just one and works up to 3 objects to choose from.  The puzzle starts out with one piece, and works up to 4 or 5.

Here's my one (minor) complaint with Injini - I want the full version BADLY, because both boys have had such a great experience with the free one, but the full version is $49.99!  I could get it for them for their birthday coming up next month.  But it makes me ill, to think of paying that much for an app.  I keep hoping it'll go on sale, or something.  If you ever see a sale on this one, PLEASE email me immediately!

My greatest fear

About three weeks ago through Facebook I met a mom in Maine, who has identical twin boys with Fragile X -- just like me.

And of course, any mom with children with Fragile X is like a sister to me.

So to find another Fragile X mom with identical twins is really, really special for me.  I belong to the local multiples club and that's been fantastic.  Any mom of twins, triplets or more will tell you there's nothing like the camaraderie we find amongst each other.

That is maybe even more true with the Fragile X moms.  We have a thread of likeness strung through us that we don't find with other people.

So to find both of those in one person is like Christmas Day for me.  I run and cling (well, figuratively) to this person, because I think this might be the one person, among all the others, whose life really will be JUST like mine.  I know it's a little illogical, but I'm attracted to people with the multiples/Fragile X combination.  I beeline for them.  Can't help it.

Her name was Sara, and her identical twin boys with Fragile X are 13 years old.  I looked through all her pictures of them -- they are so gorgeous!  Two little blondies, looking just alike, sitting together, making faces at the camera, wearing their matching glasses.  With something of that Fragile X look in their faces that we FX moms have all come to recognize, and adore.

We exchanged several emails, chatting about our boys.  We shared pictures and stories about our lives.  I asked her if she'd be coming to the International Fragile X Conference in Miami next July, and she didn't think she'd make it.  But we hoped we'd get to meet in person someday.  I felt such a great connection to her.

Which is why it came as such a heart-skipping shock to find out she'd passed away, only about two weeks after we met.

Any death of a young person, a young mother at that, is a horrible tragedy.  Nobody wants to orphan their children.

When your children have special needs, you can multiple that by 10.  Leaving my boys, suddenly, like that?  It's my greatest fear, and I bet I share that with most of the moms of children with special needs.

We know we are our childrens' best advocates.  Supporters.  Teachers.  Cheerleaders.  Caretakers.  Butt-wipers.  Nobody is going to do it with the fervor and love and intensity that we do.  There is no substitute for the Momma.

Of course, I don't want to leave Aliza either.  But it's different with her.  She's neurotypical, to use the current politically correct word.  She's only 9, but she's street-smart.  The boys won't be so street-smart.  I try to focus on the potential the boys have rather than the limitations, but reality sometimes rears its ugly head.  The reality is, they are going to need their mom in more ways than Aliza will, and for a lot longer.

We reluctantly let go of our special childrens' hands to let them go to school.  We don't very often have babysitters for our kids who aren't grandparents or other relatives.  As much as we might like to avoid the words "normal" and "different," our kids just aren't like other peoples' kids.  They are vulnerable.  They really need us.  Nobody is going to provide care as well as we can.  (And when I say "we," I mean "I."  But I'm pretty sure I'm not the only one.)

Sara, I'm sorry I didn't get to know you better.  I think often of the husband and family you left behind.  I think often of your sweet little twin boys.  And I pray that God will provide an advocate for them as devoted as their mother was.