My Little Royal

Aliza got up to watch some of the Royal Wedding with me Friday morning.  She was there in time to see Prince William and Princess Catherine in the horse-drawn carriage, riding down the street, smiling and waving at the thousands of onlookers and fans.  She was impressed.

"Wow, I could get used to that."  She said.

I don't know how she's going to ever be a princess though, when she's decided she doesn't like princess-y dresses.  Her First Communion is this weekend and our dress shopping adventure yesterday was painful.  All the church-appropriate dresses she didn't like.  The dresses she likes are more nightclub appropriate.

"This is for church.  You're not auditioning for "All That Jazz,"  I told her when she begged for a tight little green dress that shimmered with sequins and glitter.

What can I say.  She's a dancer.  Dancing has taught her that sparkly things are pretty.

If she should ever find herself with a gig singing the blues in a nightclub in New Orleans, something tells me she'll have no trouble finding the perfect dress.

P.S. - Why am I not surprised there's an official American Girl First Communion doll?

Otherwise Known As...

Twins must have a bunch of nicknames, it's one of Murphy's Laws.  We have called the boys
Pete and Repeat

Hack and Slash

Cheech and Chong

Bert and Ernie

Tom and Jerry

Sigfried and Roy

Tweedledum and Tweedledee
Chip and Dale
the Gruesome Twosome

the Awesome Twosome

Phineas and Ferb

Peanut Butter and Jelly

Chunky and Monkey

Naughty and Naughtier

Is this normal, or do I need more antidepressants?

Is it normal to feel like the joy of every holiday is a little dimmed by the fact that two of my three kids utterly fail to recognize the traditions and special events?  Is this normal for parents of special needs children, or do I need a higher dose of Prozac?

I prepared fun-filled Easter baskets for the boys, but they couldn't have cared less.  Aliza found their baskets for them and showed them, but they would not be distracted from the TV.  The Easter Bunny had been quite generous, but all Zack and AJ were interested in is watching their latest favorite episodes of Dora the Explorer.  Aliza knew her chances of getting AJ to hunt for eggs with her were better than with Zack, so she hid a few of the eggs for him specifically and tried to get him to hunt for them.  AJ was not cooperative.

When the boys were first diagnosed with Fragile X, I had all kinds of plans.  I was determined not to let Fragile X be their whole lives.  They were still going to play soccer; they were still going to sit on Santa's lap.  They were still going to have birthday parties and cake and candles and all that.

But somewhere along the way I started backing off on things.  I think I saw that doing all those things was not only going to be a lot harder than I gave it credit for, but also that the boys wouldn't enjoy it.  All it would do is stress them out.

The end result is, every holiday, every event, every "normal" thing, is tinged with a bit of sadness with the realization that we don't do any of those "normal" things I planned on them doing.  And sometimes I feel like I haven't tried hard enough.

By midday yesterday I'd decided to enjoy the holiday, however we spend it.

There's a need sometimes (repeatedly), to get over what you thought was going to be "normal," and live with what "is."

Here's the thing.  What if they didn't have Fragile X, and did play soccer, and did have fabulous birthday parties, but didn't happen to like jelly beans?  I wouldn't fill their Easter baskets with jelly beans, and then be sad that they wouldn't eat them.  I'd get some jelly beans for Aliza, but stick to chocolate eggs and bunnies and whatever candy they did happen to like, for the boys' baskets.  So what I should have put in AJ's basket was a mini bag of Doritos.  Zack's basket should have been filled with Honeycomb and Cookie Crisp.  As it was, I put mostly traditional Easter stuff in their baskets, and predictably, they were unimpressed.

And now I have to eat those jelly beans and chocolate bunnies.

Maybe one of these days, I'll learn.

We went to Grandma & Grandpa's for the day and our whole family ended up having a great holiday. Spring has finally decided to grace us with its presence!  Zack rode a tricycle (with much encouragement).

And AJ rode a bike.

Aliza blew colored bubbles.

It was a very nice Easter day.

Zack and AJ may not do things just like every other kid.  But, things in their world can be fun too.

That's not to say we won't keep trying to get them to appreciate traditions and holiday events.  But I plan to appreciate whatever it is they are able to enjoy, here and today as well.

Dinosaurs and Feel Good Friday

Whose homework is this, anyway?

Remember awhile back when I mentioned I had to make a dinosaur diorama?  I actually wanted to tell that story here and just didn't have time that week.

So, about a month ago Aliza had to make a dinosaur diorama.  So you know how that went, right?  I had to make a dinosaur diorama.  I mean, this was something a 2nd grader could not do by themselves completely.  She doesn't know where I keep empty shoe boxes.  I rummaged through the plastic bin of craft supplies (i.e., leftover tissue paper, dried bottles of glue, watercolor paints so old that all the colors are brown, random sequins and beads, and an enormous packet of construction paper) and decided the construction paper and tissue paper would make good grass, sky, and a pond.

And honestly, from there Aliza took over.  She decided to make trees from sticks and balled-up green tissue paper.  She decided the pond would look better if she glued a bunch of blue shiny sequins to it.  And she was right.

We walked it into class proudly.

I was shocked to see the other kids' dioramas.  Outrageously complicated, detailed, perfect dinosaur dioramas that clearly no 2nd grader had done, unaided.  Their parents must be professional artists.  These could have been movie sets from "Land of the Lost." 

I swallowed my suspicion and commented to her teacher about how awesome (and I'm not overusing the term "awesome" here, I mean, they really did induce "awe") some of them were.  Her teacher nodded, lowered her voice, and told me she knows when a child did the work and when a parent did.  She wasn't born yesterday. 

She thought Aliza's dinosaur diorama was excellent.

Check out other Feel Good Friday entries here at Lia Sophia Tomgirl...

Easter Wishes

Aliza told me a week ago that she knows I'm the Tooth Fairy.  I told her she better get back to believing, if she expected the Tooth Fairy to bring her any cash for her tooth.

So evidently, the Tooth Fairy is a bunch of bunk, but the Easter Bunny is alive and well.  Because yesterday she asked me if I'd ever seen the Easter Bunny.  And I don't think she was just asking to make me think she still believes.  She seemed very serious.  She's not that good of an actor.

She's hoping the Easter Bunny will stop by and pick up this note.

(That's skateboard, by the way.)  Bless her little heart, and may she never know I post these on the internet.

I'm pretty sure the Easter Bunny will not be leaving a skate board anywhere near her basket.  Odds are much more in favor of a gigantic chocolate bunny.

The boys will not be getting chocolate bunnies in their baskets because they don't like them, and I do, very very much.  I think they will get bubbles and pajamas.

Well, maybe just a couple of little chocolate bunnies.





Less is More; Makeup 101

I don't wear much makeup.  I was taught that makeup should enhance your features and not be noticeable.  I go by the theory, if you can tell I'm wearing makeup, then I'm not doing it right.  You should notice me and my glowing, personal style, not my makeup.

When going out and about, my usual prep routine includes hair dried and sprayed into place, and makeup including a blending base, a slight line of charcoal eyeliner, and eyeshadow just a touch darker and shiner than my base.  If I wanted to really glam it up I might slap on some mascara.

I usually feel pretty confident in my look.

Twice in the last few months I've had a chance to have my makeup done for me by professionals.  Both times the first thing the makeup artist did was look at my face closely and ask very nicely "now, do you usually wear any eye makeup?"

I was a little thrown off guard, both times.  Because I thought I WAS wearing eye makeup.

Maybe I'm just doing such a good job of applying it that not even a professional can tell where my natural face ends and the makeup begins.

So today I put on more makeup than usual.  I really laid it on thick.  I used 2-tone eyeshadow.  I keep catching my reflection in windows and mirrors and thinking, I look HOT.

I'm headed to Target shortly.  I wonder if people will wonder who the supermodel is, browsing the toilet bowl cleaners.

I plan to do some winking, as long as my eyelashes don't stick together.

The Annual Early Childhood Special Education Parent Conference and Retreat

Now that we are graduates of the ECSE program (beyond ages birth - five) in Dakota County, we volunteer to help organize and put on this retreat, because we really feel it's a huge benefit to young parents.

First thing when attendees arrive, they wander through a vendor fair to their assigned parent networking group.  Networking groups are based on different types of disabilities.  Mark and I facilitated a group of 7 couples, all of whom had children ages 2 and under who have very rare chromosomal abnormalities. Since they are so young, all of them were dealing with very recent diagnoses, and very fresh grief. One had had a diagnosis of Angelman syndrome for only about 3 months now. Another had a toddler with a form of dwarfism.  Two of them had children with diagnoses that were tough to research because most of the time, children with those chromosomal abnormalities don't live very long.  It was very heartwrenching.

Of those 7 couples, 5 had children who are fed through feeding tubes. A large portion of our discussion centered around feeding tube issues, concerns, and solutions. One couple had been rising every 3 hours, every night for a year since their daughter's birth, to refill her feeding machine.

The other couples with feeding tube experiences were quick to point out that you can load a feeding tube machine with a full night's feedings all at once. The mother was concerned that the formula shouldn't be sitting out for that many hours but the others assured her it was fine, as long as it was cold. She also expressed concern about the formula being too cold when it arrived at her baby's stomach. One of the other moms pointed out that once the formula travels through 4 feet of feeding tube, it's warmed enough not to bother the baby. All the other parents were running feeding machines all night long without a problem, and they told this other mother how to do it, and I could see how relieved she was. She elbowed her husband and said "see, I told you we'd learn something valuable here."

As a facilitator, it was really gratifying to see those people share knowledge and experiences and help each other out.

Another couple, whose daughter had been diagnosed with cat's cry syndrome, mentioned that they wished they knew of a family psychiatrist or therapist who worked specifically with families of special needs children. Later that afternoon, I was talking to another mom I know, and she happened to mention a therapist she had seen who was great with the special needs of her own family. I wrote down the information and when I ran into the couple from our networking group later before dinner, I was able to pass it over to them. I loved being able to connect them with exactly the type of resource they were looking for.

This is just a couple of reasons this retreat is so valuable to parents of special needs kids. These parents are often brand new to the special needs world and to be able to offer them guidance, as well as a place to sit and have a meal and talk about your children with other people who really know what it's like, is like a treasure. They really do go home better equipped to handle the challenges they face, which strengthens the family unit, and strong families benefit the community as a whole.

I benefitted from this retreat myself and still benefit from it, now that I'm a volunteer helping to organize it.

We stayed overnight at the retreat and managed to get upgraded from a very nice hotel room to a jacuzzi suite, which, I'm not going to lie -- was pretty sweet.  And you'd think that after a nice soak in a jacuzzi that a person would sleep soundly, but that was tough to do after 11:30 or so when someone was knocking at our hotel room door.  We ignored it, thinking that, if anyone really needed our attention, they'd call.  My cell was on.  The knocking persisted, however, as did our ignoring, until finally the phone rang.  Apparently someone had requested the "romance package," and they thought it was supposed to go to our room.  At 11:30 at night.

Awesome.  Honestly, I don't even want to know what all is included in the "romance package."

I wanted to tell them I had only ordered the "sleep package," which they had now deprived us of.

Our excellent grandma & grandpa babysat the kids for the weekend, so we came home to an army of new toys and books.  Aliza claimed, however, that she did not get EVERYTHING she asked for.  I think they all had a nice time together.  AJ must have had a nightmare, because he woke up in the middle of the night, upset, and couldn't shake it off.  Grandpa brought him downstairs to rock in the recliner, which is kind of AJ's "happy place."  He did finally relax there and allowed himself to be brought back to bed, looking over at grandpa once to say "no mom."  Missed his mom.  That kid is a little heartbreaker.

Thanks grandma & grandpa, for taking the kids for the weekend so Mark and I could have this experience, as well as have a breather from the kids.  I really enjoyed not hearing The Monkey Dance, Dora sing "We Did It!" and Diego ask "Are you strong?  Are you REALLY strong?"  And I especially enjoyed not hearing Zack's complaining, nerve-shredding scream.  Grandpa said he didn't do it all weekend while I was away.  I guess he saves that one especially for me.

Feel Good Friday - Better Late than Never

Finding stuff to feel good about, more or less....

1.  This past week we recognized the anniversary of our D-Day.  The day we got the Fragile X diagnosis.  It was Tuesday.  We talked about it a little, and I did not cry.

2.  I saved my crying for Wednesday, when the lead psychiatrist lady told me it'll be nice when my boys are able to say "I want to call mom" to the staff at their group home where they'll live when they are grown.  What's so ironic to me is the fact that of all the phrases she could have used as an example, she chose that one.  My guys will want to call their mom from the group home.  Well isn't that nice.  Hey, I'm seeing the humor in it now.  (On a more serious note, I am thinking about whether or not to say anything to her about how hurtful and inappropriate and just plain wrong it was for her to say that.  I've gotten so much awesome support and love from you about this and I am so grateful for everyone who emailed, called, commented, or even just read this and thought or prayed for us.  It's like she deflated my balloon, and you guys came right over and pumped it back up!)

3.  This weekend Mark and I are headed to the Dakota County Parent Retreat.  It's a weekend gathering for parents of children with special needs, ages birth to 5, who live in Dakota County and are receiving services from the school districts' ECSE (you've heard of ESFE - Early Childhood Family Education - did you know there's also an ECSE - Early Childhood Special Education?  I didn't know either, a few years ago.).  Our kids have graduated from the ECSE program but we still go to the retreat, because I joined the committee to plan it.  It's a terrific day and a half of learning, commiserating, relaxing, bonding, and sharing.  We will be facilitating a parent networking group in the morning and then sitting on a panel of special needs parents in the afternoon.  Then we get a fancy dinner (read: without children) and a stay over night in a nice hotel!  I think we are going to go see a movie after dinner!  I am perusing Fandango to see what's playing.

4.  Tuesday night was our Mothers of Multiples meeting and it was a spa night -- a night for total relaxation and conversation.  It was so much fun, I do love my MOMs!  I talked to a few MOMs about our Special Kids, Special Needs subgroup and we have decided to have our own dinner, to meet and share stories and keep each other afloat.

5.  No one has thrown up in this house in a whole week now.  Well, almost a week.  Almost counts.

Feel Good Friday is currently being hosted by Lia Sophia Girl, so if you feel inspired, write down some things you have to feel good about and get on over there to link up.

And to The Girl Next Door Grows Up, the originator of Feel Good Friday, if you are reading this, I miss you and I'm eagerly anticipating your return!

She should have just punched me in the head.

There was a Simpsons episode where Bart's girlfriend breaks up with him, and then she reaches into his chest and rips his heart out, saying "you won't be needing this anymore."  Then I think she throws it against the wall.  That sort of happened to me yesterday.

The head honcho, the bosswoman of our therapists was here today.  The one who makes decisions.  The one who has said "mental retardation" to me so many times.  I mean, I think she said it completely justifiably, in the context of the discussion we were having about the boys progress and their disability.  At least I think it was completely justifiable. Those two words slice through me like a hot knife through butter, and by the time we're done talking, I'm a melted mess a goo.

After what she said today, I feel like she may have lost her touch with humanity.

So anywho... today she was here to evaluate the boys' progress.  Since we are getting close to summer and then to 1st grade in the fall, we need to figure out what the plan is for the next few months.  When they go to school full time next fall, there won't be as much time for ABA therapy at home.  Basically, it's time to start winding it down a bit, start planning for how we are going to finish.  She asked me to be thinking about what exactly I want them to be able to do, by the time we are finished with ABA.  Which will be in less than a year, I'm guessing.

Then she went to observe and evaluate both boys, and came back to report her thoughts to me.

AJ is doing super well with his speech.  All his programs are moving along at such a great pace, she doesn't want to change a thing.  Zack, on the other hand, has been having some trouble keeping up with some of his language programs.  She'd like to back off of a few of them, in the interests of time.  He needs to be better at self-care and personal safety and things like that.

And from here on, I'm paraphrasing her comments, more or less, because my brain alternated between disbelief that she was really saying this, and fogging over to protect myself from the pain.  But I swear, this is what she said.

She said that at this point, we can probably make the statement that they will be in special education throughout their schooling.  And we really ought to get at least one of them talking well, in full clear sentences, so that when they are grown and living in a group home, won't it be nice if one of them is able to tell the staff "I want to call mom."

She's nodding and smiling knowingly at me as she says this.

Geeeeeeeeeeeeez, lady.  Why don't you just rip my heart out and beat me with it.

Thanks for that image.

Would Temple Grandin go see the Wiggles?

Guess who's coming back to town, after three long years?

The Wiggles!

Last time they were here, it was a less than spectacular experience for us.  But, we have come a long way since then, both the boys and us.  We've learned what to do to make experiences like this better for the boys, and they have grown and matured since then and can tolerate public events and situations better.  Quite often now, we take them places (the Mall of America, the zoo, some restaurants) and are surprised at how well they tolerate it.

So last time we saw them, the Wiggles came to the Target Center in Minneapolis.  I emailed the Target Center staff beforehand and explained our situation (Fragile X, autism, anxiety, sensory issues, etc.) and they generously offered to let us sit in a suite.  The boys got to watch the show from behind the glass doors, where it was a little quieter and easier for them to handle.

This time they are doing their show at the Historic State Theatre.  This venue is a little smaller and unfortunately doesn't have suite seating.  They really don't have any special accommodations to offer us.  I know, because I already emailed them and asked.  All they could do is let us have seating way in the back of the auditorium, so we can get out easily and quickly.  There are no monitors in the lobby area though, so once you are out of the theatre, you don't see the show at all.

They were super nice and appologetic about not having what we need.  So I'm pondering this one.

Should we, or shouldn't we?

What would Temple Grandin tell us to do?
Well, it's been three years since the last time we went to their show.  They were 3 years old then; now they are big 6-year-olds.  Kindergarteners.

Age has not diminished their love of The Wiggles in the slightest.  If anything it's enhanced.

AJ watches "The Monkey Dance" and other Wiggles songs daily on You Tube.  He does seem to gravitate to the recordings of live shows.

Seriously, if I had $10 for every time I hear this in a month, I could pay our mortgage.

He also loves videos like this where you can see the kids dancing.  He and Zack both watch these videos over and over. 

So it seems like they would enjoy seeing the live show.  I should also mention that AJ tends to turn up the volume so high the neighbors can hear the strains of "Do the monkey!  Oo-oo-ah-ah oo-oo-ah-ah, Do the monkey!"  Very loud music doesn't seem to bother them, at least here at home.

Another thing to consider though, is that the show is at 7 o'clock at night.  It will go well past bedtime, and nighttime in general is not their best time of day.  I don't know yet if they will do a matinee.  So far both The Wiggles website and the site for the Historic State Theatre just list the 7 o'clock show.

So I don't know yet what to do.  Tickets go on sale next week, so I have a few days to think about it.

I'm open to suggestions.  What do you think?  Should we, or shouldn't we?

Buzzed

Check out our new buzzcuts!

It's not perfect, but it's better than trying to get them to sit in a salon chair and let a professional try and get near them with an electric razor.  No more floppy-haired, constant-bed-head, trying-to-look-like-Justin-Bieber hair for them.

Here's another one.

Yep, that's Zack, still drinking from a bottle.  I'm so disappointed in myself to discover that it's been over a year now since I first tackled that problem.  If you search this blog for the term "bottles" there are 18 posts about this.  I've done a lot of talking about it, apparently.

We are going to have to get back on that wagon soon.  Brace yourselves for the screaming that I imagine will be heard for miles around.

This is how I take care of myself lately.

I like to have a balance.  Not deprived, yet not indulging.  I'll let you know how that's working out.

Our Family Likes to Share

...share with each other, anyway.  We've passed around the stomach flu amongst the 5 of us in the past couple of weeks.  This is apparently a bug not unlike the Fragile X gene.  Now how on earth could I compare the flu to Fragile X, you ask?

Well, this flu bug apparently can sit dormant in your system for quite a few days before it attacks.  Much like the Fragile X gene can sit dormant in unsuspecting family members for generations, before unleashing itself in an individual.

See, everything goes right back to Fragile X.  Ah, the circle of life.

I think Aliza had it first, a good couple of weeks ago.  And then so many days passed, we thought we were in the clear, but then Zack got sick.  We didn't make a connection between the two, at the time.  But Zack's sick is a lot less ... "contained," shall we say, than his sister's.  So we watched each other closely for symptoms.  We never took our eyes off his twin brother, since the two of them share a bit more than the rest of us do.  Sure enough just a couple of days later, AJ hopped onto the flu train. (Why is it so hard to type the word "flu" without adding an "e" at the end?)

AJ is momma's boy.  He stayed attached to me through most of the worst day and a half of his illness.

Still, I was an obsessive hand washer and worked hard not to chew my nails or get my hands anywhere near my face during that time.

A couple of days went by and Mark was struck down.

I was proud of my strong immune system, and my cleanliness.  I crowed about it to the school librarian, Aliza's teacher, my parents, a couple of neighbors, and anyone else who was within hearing distance that I had succeeded in avoiding the flu.  I was a pillar of strength.  I was the last Korman standing.

This past Saturday, Aliza had her dance competition.  Her first one.  She was a little nervous.  I was a basket case.  But she did great, and her group came away with a gold medal.

I felt pretty ill that morning but I pulled myself together and brought her to the competition.  I felt enormously better after we got there.  I figured it was just nerves and once this was over, I'd be fine.

I was wrong.  Evidently I was able to mentally muscle through the afternoon so I could be there for my daughter.  This must be a specific talent God gives to mothers.  In the car on the way home, I started to feel pretty sick, and by the time I walked in the house, I was full-blown flu-ridden.  I had succombed.

I should not have crowed.  I should have shut my big mouth and prayed.

Will this teach me to stop bragging and stop tempting fate?  Probably not.

I wish a happy and healthy Monday morning to you.

Everything I need to know I learned from Dora the Explorer

The boys started their love of Dora the Explorer around the age of 2.  Now they are 6.  With the exception of a few days here and there, I've seen Dora every single day for 4 years.  I've seen every episode she's ever recorded.  Sung every song.  Read nearly all her books.  I think she's got a lot of great knowledge to share with us.

Always carry your backpack.  ~  Everywhere you go, there will be a clear path to follow.  ~  Almost all inanimate objects can speak, and they usually speak Spanish.  ~  Almost all animals can speak as well, and they are often bilingual.  ~  All baby animals like to be sung to sleep.  ~  It's good to have a reliable set of friends. ~  Those friends will pop up conveniently whenever you need them, and will have, or be driving, precisely what you need.  ~  Your family is very jolly, lighthearted and supportive, and always willing to go on adventures with you.  ~  When bad things happen, they will happen in very slow motion, so you have plenty of time to consult your friends or your backpack.  ~  When you travel to different countries, the first thing you must do is dress appropriately and then learn to sing "hello" in whatever language they speak there.  ~  Magicians and witches are evil, but very easily outfoxed by a 6-year-old girl and her monkey friend.  ~  Please really is a magic word, if spoken in Spanish.  ~  Always be nice to your enemies, even though time and again, they show up to try to swipe your stuff.  ~  The correct pronunciation of Tapir is "tape-ee-er."  ~  Aliens are cute, colorful little furry creatures who behave and speak like toddlers and have American names.  ~  When things work out in your favor (and in the end, they always do), you should always do a little celebration dance.  ~  Be kind to animals.  ~  You're nobody if you can't count to at least 10 in English and Spanish.

Got Multiples? With Fragile X or other Special Needs?

After talking to the Sertoma Club about Fragile X, my sweet friend Kim made a comment about how I should consider talking to my local Mothers of Multiples club. I loved the idea but thought, I'm not sure my topic (Fragile X) would be all that appropriate for the MOMs club......but Kim, you made me start thinking about multiples and special needs.

My mothers of multiples group currently has 590 total members. 28 of us are in the Special Kids, Special Needs subgroup. That's about one out of every 21. I've always felt like our Special Needs group was smaller than I would have expected.

I have always heard that disabilities and special needs in general are more common among multiples, simply because they are so often born premature, and the human womb was not created to hold more than one fetus. Multiple babies in the human womb create space and nutrient issues. That's why if you are carrying twins or more, you immediately get the status of "high risk" in your pregnancy. I started looking up to see what kind of information I could find on the World Wide Web about multiple birth children and statistically, what percentage of them tend to have disabilities.

(Of course, my twins' disability has nothing whatsoever to do with the fact that they are multiples. Fragile X is genetic, they got it because I am a carrier, and they both have it because they are identical. Their being twins is just a bonus.)

It's estimated that 1 in 110 children (1 in 80 boys) in the U.S. have an autism spectrum disorder. I believe in Minnesota that number is more like 1 in 70. I don't know why it would be higher here. I googled "autism rates in minnesota" and found this article from last January that indicates autism rates seem to be disproportionately high among the Somali population, at least in Minnesota.  I'm not sure what that might have to do with it.  I thought ASD was like Fragile X, in that it didn't discriminate.

And check this out, which I found on this blog.

I wonder the same things that blogger wonders. Do they just not know how to diagnose it in the states that claim a lower rate of autism among children? Or, conversely, are we too ambitious about diagnosing it here in Minnesota? Do we REALLY have that many more kids with autism than the national average?

Anyway, getting back to my original subject, I found these statistics here.

• Among identical twins, if one child has ASD, the other one will have ASD 60-96% of the time.
• In non-identical twins, if one child has ASD, the other one will have ASD 0-24% of the time.

 That sounds like there's a pretty good chance that autism has a genetic component. Is anyone doing research on that?  Are there any studies being done on the rate of special needs among twins, triplets, and more?

Because I, for one, feel like there should be.  I feel sometimes like I live on an island.  I don't relate much to my friends in the Mothers of Multiples group.  The Fragile X group members come a lot closer to getting what our lives are like.  I don't want to sound like a whiner.  (Go ahead, say it -- I kind of do sound like a whiner.)  But from the first day the boys were diagnosed, I felt pretty alone, probably just like anyone else who gets a diagnosis they have never heard of.  My multiples group's special needs subgroup was really the first place I went to, and unfortunately it just isn't very active.  It seems those people have gotten the support they need elsewhere.

Anyway -

I found a few more special needs/multiples quotes and stats I thought were compelling:

Cerebral Palsy occurs 1.6 times in 1000 singleton births, 7.4 times in 1000 twin births, and 26.7 times in 1000 triplet births.

At this site it claims "In terms of psychopathology, attention-deficit/ hyperactivity disorder is more frequent in twins and multiples than in the general population."

I wish it went into more detail about how it came to this conclusion, although it's not hard to believe.  The human neurological system is a labyrinth, and if one body is expected to create and sustain two or more new lives at a time, the chances of problems with that would increase, logically.  All it takes is one, tiny, crossed wire...

While doing this online investigation, I avoided reading anything that was more than three years old.  I didn't want to be citing something that is, in terms of autism research, ancient information.  But then I found this article called Raising Special Needs Multiples.

 I love this article.  This is information that won't change.  If you have multiples with special needs you really ought to click on it and read it.

It says

"Parents of special needs multiples often feel isolated, not fitting in with parents of healthy multiples in local twins clubs, but also not finding their needs fully met by groups of parents with disabled singletons."

I found this statement really gratifying, because it is what I've been striving to express, myself. I sometimes feel like I don't really fit in with the Multiples club, and sometimes my struggles are different from the Fragile X families I know, too. More and more I look for blogs and stories about families with twins with autism or even Fragile X, hoping I can identify more closely with them.

Another thing that falls under the category of "I Wish I'd Written That", is this part:

"If your children were born two or three months early, it might be quite awhile before they smile, hold their head up well, or roll over. This delay in development and social responsiveness is discouraging to many parents, especially if children require a lot of care and parents aren't getting much feedback in return." 

My twins weren't born that early, but thanks to the Fragile X gene mutation, we definitely experienced the delay in development and social responsiveness. I didn't realize how much I needed those smiles and hugs from my babies. It feels petty and small and needy of me to say that I really needed that feedback from them and it was tough to provide the day-to-day care when all I got in return was screaming and crying.  But it's the truth.

I used to tell people that my maternity leave with the twins was like being at work, only a work where I had two bosses who screamed at me all the time and were never satisfied with the work I did.

Everybody knows that twins often have a special bond that they don't share with their siblings or even their parents. I think twins with special needs have a connection that's even more unique.  I don't know if our twins know it yet.  But I underestimate what they are able to understand quite often, so they might already be aware of how special they are to each other.

So if you have, or know of a family with a blog about special needs multiples, please comment here and let me know about it.  I'd love to start a list!

The "Bad Zack"

Zack has caught up to his brother, and can run the laptop.  He's so tickled with himself and we're thrilled, of course, that he's found a new and very valuable skill.

The trouble is, there are only so many computers in this house.  I try to keep the Doritos crumbs and milk spillage to a minimum around my laptop, so I'd prefer they stick to using the secondary one.  They fight over it, like regular 6-year-olds.

His favorite clip on You Tube is from Dora the Explorer (I'm sure that comes as a big shock), The Chocolate Tree.  He could watch it over and over and he stims (v. to self-stimulate; (specifically) among autistic people, to fixate on a comforting or compelling thing or action (such as rocking or humming); to perseverate.) wildly as he watches, screaming and wringing his hands until he rubbed a sore on his index finger (if you look at the pictures on the post right before this one, you can see it in the picture of him screaming right next to the trampoline). 

He gets himself so worked up watching it that I'm trying to ban him from it.

I poked around in Internet Explorer looking for a way to block just The Chocolate Tree videos from You Tube, but it seemed to want to block You Tube altogether.  So be it.  I blocked it.  But it doesn't work!  They can both still bring You Tube videos up on that computer.

When I try to remove him from the computer and redirect, he's pretty aggressive and out of control.  It brings out the "bad Zack."  He'll scream and cry and it's more than the screaming he usually does, when he doesn't get his way.  There's a breathlessness to this screaming, and his face gets all blotchy.  He'll pinch anything or anyone within reach.  It's much more tantrumy.

So apparently, going to "Content" in "Internet Options" and blocking http://www.youtube.com/, does not actually make it so you can't get to http://www.youtube.com/.  I'm not sure what function it achieves.  I'll keep exploring it and maybe I'll figure it out.  I guess it's just another example of technology getting the best of me.

Back in the Backyard

The snow is not quite gone, it's pretty muddy and filthy back there, but we just couldn't wait anymore.  We've been without our trampoline for five months, and this past week was spring break, so we decided to treat it as such.  We are going to behave as if it's spring, whether or not the weather acts like it's spring.

It actually has been warm enough to be outside, so we took advantage of this opportunity to get the boys away from the computers and the TVs and let them run off some of that pent up winter energy.  Our cure for cabin fever?  Getting out to our beloved backyard and getting the security netting up around the trampoline.

Oh please let me jump, I just can't wait anymore!

I hate when he climbs up this rope.  Thinking about taking it down.  But he loves it.

First time down the slide in 2011, yay!

Running

Jumping

And swinging

The sand is cold and wet,but since when has that ever stopped us?

Behold - utter joy.

More later about how Zack has been really angry lately and needed that trampoline to release some aggression....

*Warning to RSS Feed recipients

I'm about to admit to letting technology get the best of me.  It's hard for me to admit that, I like to pretend I'm a lot more of a techie-geek than I am.  I'm a techie-geek wannabe, I guess.  Which just makes me a geek, doesn't it?

I am going to delete the RSS feed to this blog and make a new one on Monday.  The problem is that when I started it, this blog was called "3 Little Monkeys", and I am a subscriber myself, and when it comes in my email it still says it's "3 Little Monkeys," and I can't figure out how to change it to save my life.  Or rather, to save my RSS feed.

So I'm going to delete it and make a new one.

If you are a Follower, you'll be fine, nothing will change there.

By the way, if you actually are a techie-geek and you know what I need to do to fix this (don't tell me to go to the feed set up and change the name please, I've done that.....) I'm all ears.  Or eyes, reading your comment/email.  I'm ready to learn, or to delete and redo, whatever it takes.

Childcare at the YMCA?

We get a YMCA family membership every summer.  We get it so we can take the boys swimming, mostly.  Mark and I try to get over there to exercise once in awhile too, but honestly, that doesn't happen very often.  It's too hard to get away without the kids.

We have brought the kids to the childcare center at the Y, but we've never actually left them there.  Mark stayed in the childcare center with the kids while I worked out or went to a class a couple of times.  But we certainly didn't leave the boys in there with only the Y staff to tend to them.

My little dancer is in her first competition in a week!

So this year, I'm thinking.....maybe we should try it.  Obviously with the support and cooperation of the YMCA staff, but I think we could slowly work our way toward a point where they could stay in the childcare center by themselves.  I could bring the kids in there myself and stay with them, and a couple of times, just be a little out of sight.  Still in the room but maybe where they can't see me.  Just for a few seconds.  Then after that working successfully a few times, I might actually leave for a minute or two.  Then maybe 10 or 15 minutes.  Again, I'll need the cooperation of the childcare staff, so I'll talk to them about it and see what they think.  I'm just hoping that maybe, one of these days, we can all go to the YMCA, all five of us, drop the kids off in the daycare, and Mark and I could go exercise.  Just like a normal family.

I mentioned this idea to Aliza today -- and she immediately assured me "mom, I'll be there watching them the whole time, don't worry."  Can you stand it?  What a sweetie she is.