Why I Hated "Welcome to Holland"

Note the past tense here -- "hated."  I don't hate it anymore.  I don't mean to offend anyone who gets a great deal of comfort from that story.  I am willing to bet there are folks like me though, who were very turned off by it.  If you're wondering what the heck I'm talking about, here's a copy of it: 
http://www.our-kids.org/Archives/Holland.html

Within a week of my boys' diagnosis, someone brought me that story.  I just hated it from beginning to end.  I didn't want to go to Holland or Italy.  I wasn't that much of a traveller.  I just wanted to stay at home and bury my head under my pillow.  I thought Welcome to Beirut described how I felt about this whole situation much better.

I have two Dutch children and one Italian (translation -- two special needs, and one typically developing).  I can't live full-time in either country; I have to travel back and forth.  In Italy, my two Dutch children are overwhelmed and have a very tough time.  It's big, crowded, loud, and full of people who don't speak their language.  Holland, on the other hand, is very child-friendly so my little Italian child has a good time there, usually.  But it's slower-paced and less exciting than Italy and the older she gets, the more bored she is with Holland.

We have all gotten used to travelling, though.  We are finding ways to be comfortable in both Holland and Italy and to see the beauty in both places.  We are working on educating the Italians on what the Dutch people are like, because they aren't going to stay in Holland.  They are going to visit Italy frequently, and Italy just better get used to it~ because in the end we are all humans, who have to share this world with each other peacefully and with acceptance for other cultures.

And now, I'm stepping off my soapbox.  Thanks for listening.

IQ Test Reflection, and Dakota County Parent Retreat

The IQ test went pretty well, smoother than I thought it would.  It was shorter and easier than I feared it might be, the psychologist was actually really prepared, and when it was clear there was a section the boys would not be able to do, he'd skip right over that and move on.  The speed was very helpful to us, my boys have a short attention span (about 1000 times shorter than your average 5 year old) and the quicker we could get through it and get out of there, the happier we'd all be.

They surprised me in part of the test.  He'd turn to a page in a 3-ring binder with pictures of a cat, a shovel, a tree, and a car and ask the boys "which one do you pet?" and they both pointed at the cat.  "Which one do you drive?" and they both pointed to the car -- I didn't know they recognized words like "pet" and I didn't know they understood the purpose of things....like cars are for driving.

We are going to get the results of the test next week, but I really think I'm over it already.  I know they aren't geniuses.  I know they won't score well, but I also know how very few answers they were able to get out of the boys, and I know they surprise me constantly with what they do comprehend.

I'm taking a break, already, from the Curcumin.  It's hard to mix with the applesauce, it's nonsoluable (there's Chemistry 101 vocabulary coming in handy) and it doesn't stick to anything except for skin, carpeting and couch fabric.  And it's orange.  I am thinking of putting it in their peanut butter sandwiches, but I feel like I lace everything they eat and drink as it is with some kind of medicine or supplement as it is.  I've got to do more brainstorming about the Curcumin and how to get it in them.

All this is good preparation, mentally anyway, for the kindergarten transition meeting next Friday.   Mark and I are at the Dakota County Parent Retreat this weekend, for parents of children with special needs ages birth-5, and I just came from a session about making the transition from early childhood to kindergarten.  I'm apprehensive about that meeting but I feel a little more prepared every time I talk to another person who has been through it.

It's time for the second set of sessions for the afternoon, I'm going to see what Carol Barnier has to say in her talk -- she is so fun at her website, http://www.opengifts.org/, and her books are so wonderful!  I'll post later more about her.

Wordless Wednesday

I'm actually against the concept of Wordless Wednesday because I promote the idea of writing.  But in reality I like posting pictures.  So here goes my first attempt (and failure because I couldn't help explaining myself) at Wordless Wednesday.

IQ Testing

Tomorrow morning the boys are doing to see a psychologist for IQ testing.  Apparently in order for us to continue to qualify for our grant, at age 5 the boys have to have it done.  And fortunately last night I was cleaning out my inbox and noticed an email someone had sent me with attachments from a talk Marcia Braden gave about IQ testing in Fragile X kids, including different techiques to get the kid to cooperate and be tested effectively, and different types of IQ tests given to children and why they may, or more often, may not, work particularly well with Fragile X kids.

Sigh....another day, another new issue to tackle.  It doesn't matter to me that much what test they use or whether it works well.  I know they won't score well.  But they manifest all these symptoms that make life challenging and we need this grant so I can continue to stay home and coordinate their daily therapy and special education classes and frequent doctor appointments, and research different alternative therapies, diets, supplements, and upcoming medications that are in clinical trials.  And those medications that are currently in use  And then, try not to let Aliza get lost in the shuffle of the boys' complicated lives.  This is a full time job.

But even though it doesn't matter which test they use, I still would just like them to be aware that there exists research and documentation on Fragile X kids and how IQ testing works on them.  I imagine these won't be the only Fragile X kids they test, and next time, they might want to consult this information before deciding on how to implement IQ tests on FX kids.

Curcumin - An Herbal Supplement Update

The curcumin arrived in the mail on Saturday and we gave the boys their first dose of it Saturday night.  So, two days on it so far, and I don't see much change yet.  I was just telling AJ's lead therapist that this morning, and then we both noticed that the boys were sitting calmly, watching Dora.....so perhaps I'm not looking closely enough.  It only lasted a couple of minutes, but it was unusual to see them both sitting down like that.

I've heard curcumin will reduce hyperactivity and increase eye contact.  The one quote that keeps flashing through my mind was from one of the moms I know in the Fragile X email group, who said that her son's eye contact "freaked her out", after starting curcumin.  She was just so surprised at how he'd stare, and look her right in the eye.  Well, I'm not freaked out yet.  But we'll give it some time, might as well; I've got a whole big $18 bottle of it!

Got Some News Yesterday

My little girl is a carrier.  Not one of my kids is spared the Fragile X gene.  Well, I wanted to know and now I know.

I was hysterical for about a half hour and then I decided I was done being upset.  I realize how lucky I am to have her at all, and there are many people who have it much, much worse.

Diets & Herbal Supplements

I have both considered and disregarded different herbal supplements and diet restrictions/changes for the boys, mostly because it just seemed like it was going to be next to impossible to convert the boys to these food changes or to get the herbal supplements, whatever form them might come in, into the boys.  But lately I've been baby-stepping my way toward giving some of these things a chance.

First, I started giving the boys a little almond milk about a week ago.  I mix it with their regular milk, about half-and-half, and I still put chocolate syrup in it, so it will still taste like the milk they are used to.  And I don't want to give it too much credit too quickly, but right away Zack seemed less aggressive.  He could actually get close to another person without leaning over to bite them.  Could it be because of the antioxidants in the almond milk - or just the fact that he's taking in less dairy?  I've heard several times that FX kids tend to crave exactly what is bad for them, and Zack and AJ are both certainly milkaholics.  At any rate we'll keep trying it.  I've made myself oatmeal with the almond milk too and it was wonderful.  I even gave Aliza a little bit this morning in her milk.

Second, I'm ordering this herbal supplement called Curcumin from http://www.iherb.com/, because I hear over and over how much it helps kids with Fragile X be more verbal and more calm, similar to the medication Minocycline, which my boys aren't old enough to take.  The FX mom who turned me on to it said it comes in capsules which she just breaks open and mixes the contents with applesauce.  Sounds easy enough.

So those are my two tiny forays into diet changes and herbal supplements.  Stay tuned for results.

Hoppy's Sleepover Notes

Hoppy the Webkin Rabbit was planning a sleepover at her friend Sunny the Webkin Cat's house.  Aliza wanted to make sure Hoppy was well cared for and stuck to her routine.

I love how there's a little drawing of a carit there.

A Pooptastic Morning

I'm not exactly exploding with energy this morning.  This past weekend was the Mothers of Multiples Used Clothing & Equipment sale - which roughly translates into 20 or so hours on my feet over the course of 2 days, and 4 or less hours of sleep in between.  It's a ton of work but it's at least that much fun too.  Here's what it looked like when we were all set up and just waiting for the chaos to begin!

*I "borrowed" these pictures from my fellow twin-mom Alissa's blog.....thanks Alissa!

So anyway, being two days post sale you'd think I might be rested up and prepared to deal with anything my 3 little monkeys might throw at me.  And truthfully I do deal with whatever they throw at me, because I have to, no matter how tired or sore or sick or icky I might feel, it's in the Mom Rules.  Every mom knows it.  But Zack really tested me this morning.

My sons are 5 years old but not potty trained; I should preface by explaining that.  The darling husband and I have developed, among many other amazing skills, the ability to change a diaper on a 5 year old while he stands up and spins around, leans over, wiggles, and tries to run away.  We are quite good at it.  Actually Mark was doing it first, and I watched, scoffing and jeering until I realized there's a lot less bending over and fighting to keep the boy laying on the floor.  I started trying it, and lo and behold, it is actually a little easier to change a diaper on a child that stands up.  You might not believe it but don't knock it until you've tried it.  Come walk a mile in my Crocs.

This morning I started our morning routine diaper change/dressing for the day, and whipped off Zack's diaper without sniffing or checking at all to make sure it was not "full".  Poop fell to the floor.  (I fully admit my own responsibility here, I should have checked before so brazenly removing that diaper.)  And it is astounding and impressive how quickly poop can be spread throughout a room when it's on a 5-year-old's hands and feet.  Within about 12 seconds it was on the hardwood floor, the couch, the rug, and a throw pillow.  The throw pillow was thrown in the trash.  The rest of it I wiped up as well as I was able, and Zack got a fast impromptu bath because his hands, feet and legs were way beyond what a wipe could have cleaned.

Oh and this was all moments before we all needed to get in the car and drive Aliza to school.

So most of the deep cleaning had to wait until we'd returned.  On the bright side, we have a super clean carpet and couch now.

I'm thinking of applying for the word "pooptastic" to be entered officially into Webster's Dictionary for the purpose of describing mornings like this one.

Parenthood

Every week I watch Parenthood and at some point in the show I am struck by how much I relate to it.

I really appreciated the significance of Max playing with another kid at the park in this week's episode.  When your kid doesn't have friends you worry as much for his happiness as his social development and skills.  The twins are 5 years old now and I'm keenly aware that the other 5 year olds in the neighborhood run around together like a little pack.  Aliza goes from house to house, often with a gaggle of girls trailing behind her.  The boys stay home, mostly.  They love to be around other kids but I can't let them be in a group of kids without supervision.  I certainly can't let them go over to the neighbor's house and ring the doorbell.  Not that they want to.  Currently I guess, one blessing we have is they don't have the cognitive skills to realize they are missing anything.  But we work to socialize them, and hopefully one day they will be able to play with other kids without prompting from an adult, and without biting or pinching anyone.

Pics

Just a few photos from visiting grandma & grandpa this past weekend.

Zack's shirt says "If you can read this you are in my way" and the small print at the bottom says "Seriously, I'm going to need you to back up a little."

AJ's off and running.

Weeds are flowers, too.

Regressing: The Bottle Battle Continues

I'm ashamed to admit the new low we've sunk to.

Zack still won't take a sippy cup without being strongly reinforced.  And he was getting a lot of his calories from his chocolate milks apparently, because his discomfort and hunger is striking out where it hurts me most -- sleep.  Or lack thereof.  He is up half the night, not necessarily crabby, but wide awake and looking for things to do.  We gave him a couple of bottles at night, had a couple of very tired days, and decided enough is enough.

So what I've done the last 36 hours or so is give him bottles, and try to hide it from AJ, because he's doing so well with the sippys, I don't want AJ thinking he's got the short end of the stick here, but I also don't want him regressing when he's been doing so well.

What you can learn from this post is, if you ever need to torture me, deprive me of sleep.  I think those first two years with the boys not sleeping more than 2 hours in a row ruined me for nighttime activities forever.  I get tired at 8 PM, and it would take something pretty special to make me stay up past 10.  (i.e., New Years Eve is not special enough.)

Changes

I'm trying to make some changes to this blog, so it's in a bit of a flux state right now.  Still working though, which is something I couldn't say for a couple of hours yesterday. 

Bottle Battle Update:
AJ is 100% on the sippy cups.  Zack is still stubbornly refusing.  Once a day or so Zack gets a bottle, just so I can give him his multivitamin.  AJ sees him with that bottle and guess what?  He wants one too!  We've got to break Zack of the bottle habit soon before AJ regresses.  So much for having them both totally off bottles by yesterday -- my revised goal date.  I'm not making a new goal date.  But I also am not buying any more nipples for those bottles.  When Zack finishes biting through the ones we have and I throw them out, that is it!

Mark and I decided this morning we will probably have to bite the bullet and go cold turkey -- no more bottles for Zack.

School News:
Did I mention that a decision has been made, and the boys will be attending Sky Oaks?  Not my first choice, even though I was told that my opinion would be taken into consideration.  They didn't take my first choice as a day/time for the transition meeting either, I asked for Thursday and they scheduled it for Friday -- a couple of weeks from now.  Maybe I have to try asking for what I DON'T want.....a little reverse psychology never hurt anyone.  I think the school will be fine though, and I plan to irritate them by volunteering there all the time so I can keep an eye on things.

FX Testing:
Last week Monday Aliza and I went in for our Fragile X blood tests.  Hopefully we'll have the results in about a week.

Mark's Job Situation:
He has one!  And all seems well, so far -- one week into it.  Thank God.

Things to do Next Week:
Write a post about the GFCF diet I've considered, along with the other supplements I'm going to start giving the boys.
Make more updates/changes to the blog.
That's all for now!

testing this new template

Zack & AJ.  This picture is from last fall, and is my current favorite picture of my little guys!