August

August has always had a dark cloud hovering over it for me.  It's the last month before the kids go back to school, which has been the routine for 3 years now because the boys started going to preschool when they were 2.  It's the last month of summer.  By now it's been hot and sticky for several months and I've had enough of feeling like I need another shower 5 minutes after I take one.  Nobody wants to play outside anymore, "outside" is boring now.  The backyard blow-up swimming pool is just a big mudhole and it's too hot to sit on the driveway with sidewalk chalk.  And the mosquitoes are at their biggest, strongest, and thirstiest.

I can think of a few years when August was tough for other reasons.  A couple of years ago, August was the month I switched from Paxil to Prozac.  The transition was like an earthquake in my soul.  I alternated screaming and crying for about a month.

August of 2005 was the month the boys turned 6 months old.  That was significant because I was so disraught over their nonsleeping habits, someone had told me that when twins (because at the time I thought the only real problem we had was the fact that there were two of them) turn 6 months old, they start to sleep better.  I ignored the fact that they were due to be born in March instead of February, which would have made September the 6 month mark, and I lived for August when somehow, magically, I believed they would start sleeping for at least a few hours every night.  I knew it would happen.

August came and went and the nonsleeping continued.  They were not happy babies.  From about the time they were 4 weeks old (and their actual due date had passed), they stopped sleeping and were cranky from being overtired, all the time.  Morning, noon, and night we worked to get these babies to relax and go to sleep.  And when August didn't prove to be the 6-month-magic-cure I was hoping for, I despaired.

Anyway, suffice it to say, I don't have happy feelings with the coming of August.  I want to like it.  August is county fairs, the Minnesota State Fair, and the Renaissance Festival.  It's the month all the Farmer's Markets get into full swing.  August is corn-on-the-cob and caramel apples.  But so is September.

September, I anticipate your glorious arrival!

Making Them Into Little Readers

Sometimes I'm a little slow.  The boys have been recognizing words for awhile.  When AJ sees the word Wiggles, he points to it and says "yes".  Zack does the same thing when he sees "Diego".  And they shake their little blonde heads and say "no" when I highlight a show on the computer that they don't want to see.

I just realized what this means.  It means they can be taught to read!  That they actually are already reading.  As an avid reader myself, it's important to me that they are able to read and that they love it.  Aliza reads, although she enjoys torturing me by saying "I don't like to read!"  I beg to differ.  She just has to have the right book.  That's all anyone needs, and then absolutely anyone can become a reader.  I honestly believe that.  I gave my friend Bobbie what I thought would hook drag her into the reading pool; I gave her "The DaVinci Code."  It took her around 18 months to read it.  I give her kudos for finishing it, but clearly she didn't find it a page turner (how could anyone not?).  Then recently, with no help from me, she found "A Child Called It" and she read it in just a few days.  Then she read the sequel.  Then she picked up a book at the library about Mother Theresa.  And now she's a reader!

I saw a video of a kid reading from flashcards at the conference, that I mentioned in this post, and I am making flashcards like the ones from the video.  I have around 23 so far, I hope to have 200 by the time I'm done.  Why 200?  Because, again as mentioned in the post before this one, if a child can read 200 words, they are considered officially a "reader."  And wouldn't it be great if they could start kindergarten already recognizing a bunch of words?  Here's what my flashcards look like on one side.  On the opposite side will be just the word, no picture.

One problem is, this method limits me to nouns and verbs.  But, you gotta start somewhere.

If you want them, email me -- I'd be happy to send them to you.  I'm just printing them out on cardstock, cutting them apart, and covering them with clear contact paper.  I priced laminating machines and decided to start with contact paper, and see what my level of commitment is here before investing.  I hope we use them so much they destroy them.....but we'll see!

Coming Back from Negative Town

This morning I took the train back to normal.  Nancy always drives me to Negative Town....

I know my boys aren't like other kids.  They weren't like other babies.  When they are teenagers, they won't be like other teenagers.  So it's a good thing it'll take them a long time to grow up, because it looks like it's going to take me years to get used to the idea that chances are, they won't be like other grown ups.

Who wants normal kids anyway?

Picking a Direction

Every week I have a "parent meeting" with our ABA lead therapists where they report all the progress.   These meetings are very positive and uplifting.  They always give glowing reports.

Every few months or so, the head honcho, the lead therapist, Nancy, comes out to check on the boys' progress and to meet with me.  Nancy almost always makes me cry.

She's very direct, is the thing.  She does not sugarcoat.  She uses phrases like "mental retardation" in the clinical sense of course.  And while my brain knows that, my heart is ripped out every time she says it.

So today we discussed what direction to take the therapy.  They have basically two roads we could go down at this point; one road continues to work the boys hard to get to a point where they are on par with kids their own age.  When they "graduate", they are equal to their peers.  They usually don't need help in school.

The other road is more of a "life skills" one.  It is the one taken when you have reached a point where you can assume the child is not ever going be able to "graduate."  Today Nancy said, giving me a little resigned smile, that we should probably start aiming toward road number two.

She didn't tell me anything I don't know.  The kinds of things we need to work on are essentially life skills; drinking from a sippy cup, using utensils, and of course the dreaded potty training.  I just am not ready to reduce my expectations of the boys, to say that they'll never be on par with their peers.

One of the sessions I went to at the conference bothered me a lot and I haven't commented on it.  It was the one about what to expect as your Fragile X child becomes an adult, and all of the adult examples they gave were doing jobs like bagging groceries.  And I don't want to offend anyone who reads this whose child works at a grocery store bagging groceries at all, but I'm not ready to make that the expectation.   I'm not ready to put them on the grocery bagger track.  And I don't think I should be, when they are only 5 years old.  I know better than to assume the medications currently in trials are going to make the boys "normal."

Oh I don't know what I hope for anymore.  I'm going for a walk.

Coming Down from the High - More Conference Stuff

The boys missed us.  Upsets, aggressions, and behaviors are up, as our therapists would report from their careful data!  But hugs and cuddles are up, too!

I think it will take awhile to ponder and process everything I learned at the conference.  A huge burst of information taken in over a period of four long days!  Thankfully I took notes and for the most part can read my own scribble. 

One of the sessions I went to struck me with a bit of panic.  The speaker commented that when our children are small we are so concerned with language and sensory issues, we make fine motor skills a lower priority.  Eeeeek, that's me!  We should actually have them use a pen/pencil/crayon of some sort every day.  Write, color, draw, scribble, whatever, just so long as they are learning how to hold a writing utensil properly.  She said many of us think (yep, including me) that our kids can just use keyboards, they won't have to learn to write by hand.  The truth is, holding a pencil and having the control to make a line on a paper purposefully is an important developmental skill.  A skill they should be working on every single day.

In this same session there was a video of a boy who looked exactly my boys' age, being shown flashcards with words and pictures on them; for example, it would say "SUN" and then there'd be a picture of the sun.  That boy knew every word.

Then the cards were flipped over and on the opposite side there was just the word -- no pictures.  Well, that boy became agitated and downright angry, trying to grab the cards out of the therapist's hands.  She held firm and eventually he said the words as she flipped through the cards.  He still knew each of those words without seeing the picture -- he just wanted to see the picture.  He continued to be annoyed that she wouldn't turn the cards over, but he read through the whole stack.

Here's a statistic I hadn't heard before -- if you know 200 words by sight, you can read.  Simple, first-reader books, obviously, but you can read!  I thought, I bet AJ is well on his way to knowing 200 words.

I searched online a bit but couldn't find any free flashcards that were exactly what I wanted, so I'm making my own in MS Publisher.  Now, I just have to score a laminating machine.....

The other session I found helpful was the one on talking to your children's fellow classmates at school about Fragile X.  It's very important to me that my kids find acceptance and even friendship from their peers.  I'm going to talk to Zack & AJ's kindergarten class about them, and I need to be exceptionally prepared.  Before I go in there I'm going to know almost word for word what I'm going to say.  And I need to be prepared for tough questions.  Like, why does Zack bite?

Holly Roos gave such great pointers and sample things to say.  You begin by talking about what kinds of toys the boys like that other kids like, too.  Like firetrucks.  Who likes playing with a firetruck?  All the kids, boys at least, will say they like that.  Then I'll talk about how some firetrucks have lights and sirens and do all kinds of things like that.  Some trucks don't have the lights and sirens, some of them require that YOU make the sirens sounds while you play with it.  But those are still fun to play with, right?

Here is where I hope the kids say "YES!"  Because then I compare Zack & AJ and other kids with autism to the trucks that don't make noises or have lights.  You have to play with them a different way, because they don't work like the others.

Another really eye-opening session I attended was about participating in clinical trials.  They reviewed the different phases, what happens in each, how long they might last, and what they look for in test participants.  They discussed placebo medications, how they work, and why it's just as important to the study for some kids to be on the placebo as to be on the actual trial drug.

I thought it was interesting that they do sometimes prefer to test the more severely affected patients, in hopes they'll see the most dramatic results from those patients.  At the same time, the more severely affected patients can't report results as accurately, and the study relies more on the caregivers to report results.  It had not even occurred to me that there were patients participating in studies who can report personally how they are doing!

Finally, it was pointed out that we should consider carefully why we are participating in the study.  Is our motivation simply to help our children, or do we honestly want to advance the research?  Apparently there are occasions where a study participant's parent will pull them from one study in order to participate in another study they think might offer more dramatic help for their child.  They understand why parents might do that, but it obviously hurts the process and prolongs the length of an already years-long drug testing trials.

Vacation Bible School and Strangers

Aliza started Vacation Bible School today.  A lady whose backyard backs up to our backyard is driving Aliza and several of the neighborhood kids to the Baptist church where apparently they have clowns, mini donuts, and a carnival on the last day.

When this lady first started talking about it last week, offering to drive the kids over there, I thought, sure.  I let my kid get into a car with a total stranger at least once a week, why not?  Then she started asking me pointed questions about the boys and how they were doing, and I realized, I'm supposed to know her.  I don't recognize her, but apparently she knows me......but for the life of me I can't place her.

This happens a lot.  Although usually said person acknowledges that I don't know them by saying something like "I know you don't know me, but I know your boys from....."

Then later Aliza tells me the lady lives "where Honey lives."  Oh, Honey.  The little golden-colored poodle that lives behind us.  Now, Honey I do recognize.

I should mention here too that it doesn't surprise me when Aliza knows neighbors that I don't know.  A couple of weeks ago I met someone who moved into the cul-de-sac down the road from us about a year ago.  After I introduced myself she immediately says, "oh, I know your daughter."  Seems that she lives in what must be the coolest house on this street, because there's a swirly slide attached to their back deck.  And when they were moving in, my nosy daughter happened by on her bike, noticed the slide, and marched right up to ask if she could have a go.

So she's off to Vacation Bible School now, and I'm going to go check my bible to see where mini donuts and clowns are mentioned.  Must be New Testament.

Downloading from the Fragile X Conference

It was a week full of
Thrills (seeing Dr. Berry Kravis and the Hagermans),
Chills (overly air-conditioned hotel conference rooms),
Sights (The Henry Ford Museum),
Friends (met lots of them!),
Rain (every day, is Detroit pretending to be Seattle?),
Giggles,(the video of the FMR1 mouse trying to run on the spinning rod),
Education, and News!

It was intense and enriching.

We started by sliding in to the Hyatt Regency Dearborn just in time Wednesday night to hit registration and the last 45 minutes of the welcome reception.  On Thursday morning the education began with a session by the renowned and beloved Dr. Elizabeth Berry-Kravis, a professor of Pediatrics, Neurology, and Biochemistry, on new medications being targeted and tested for Fragile X patients.  If you haven't heard Dr. Berry-Kravis speak before, here's how it goes:  she takes a breath, talks for 30 minutes about concepts your brain struggles to grasp, and then stops and takes a breath.  You don't blink the entire time but you come away enlightened.

I attended sessions on:

• Understanding and Treating Behavioral Issues
• What Does the Future Hold for my Child with Fragile X?
• Talking with Students about Fragile X Syndrome
• Panel:  Participation in Clinical Trials of Experimental Medications
• Panel:  The National Fragile X Foundation LINKS Network
• Toilet Training Your Child
• Raising Fragile X Children:  Your Guide to Thriving, not just Surviving

to name a few.

I participated in a survey the University of Philadelphia was doing on caregivers of children with Fragile X, for which I have a chance of winning an Ipad.  I registered the boys and myself with the Fragile X Syndrome Clinic & Research Consortium.  If research studies come up for which we'd be a good fit, they will contact us.

I spent a lot of quality time with Zack & AJ's developmental specialist/nurse practitioner Janet Mims, who told someone that she'd come to the conference because I'd sounded so excited about it and she didn't want me to know more about Fragile X than she did.  We had a lot of fun and she is now absolutely one of my favorite people!

I met everyone here from Minnesota, and Brenda, a Facebook friend from Iowa.  I met Mary Beth, a Michigan friend, and Holly, an Illinois friend.  At the welcome desk they had a big posterboard map of the US where you could put post-it messages up to conference attendees, sticking the post-it on whatever part of the country they were from.

On Friday Mark fulfilled a lifelong dream (I don't really know that, but it sounded so dramatic, didn't it?) to visit the University of Michigan campus at Ann Arbor.  He began by checking out the Evans House;

and then the law library

and then nearly got himself kicked out for using a flash taking pictures in the art museum.

On Saturday we visited The Henry Ford Museum, just down the street from the Hyatt.  I'm not much of a car enthusiast though I tried to show the proper respect.  We are, after all, in the Motor City!

However, the history section of the museum did peak my interest.  We showed reverence for the car John F Kennedy was shot and killed in.

And I was surprised we were allowed right on the bus that Rosa Parks made famous by standing her ground.  This is the seat she refused to move from.

The furniture was nice, but to me, there is a fine line between antiques of museum quality, and garage sale crap.  Maybe this means I should pay more attention to old looking furniture at garage sales.

Is it an ancient baby swing, or some sort of torture device?  Picture a baby in there.  Crying.

and I was more than a little disturbed to discover toys I played with as a child are now ancient and fascinating enough to be in a museum.  Speak and Spell and Simon?  I think I still have one of those somewhere!  And that little handheld football game was awesome!

Maybe I should see if they want my old Macintosh from 1993.

Finally it was time for the banquet.  The banquet and auction is the traditional end of every conference.

And now it's time to get on a plane and go home to see my babies!  More tomorrow about actual things I learned.  And maybe, more photos...

Off to the Conference!

We leave for the Fragile X Conference today!  Not sure how much time I'll have to post while I'm there (although naturally the laptop will be accompanying us) but I'm very excited to meet people, take in information, and get great pictures!  I'm also going to enjoy spending a few days not thinking about dishes, laundry, when the next medication is due, who pooped last, where that bite mark came from, and wondering how we can be out of cranberry grape juice and Cookie Crisp when I was just at Target yesterday.  And the day before.  And the day before that.

I do think that I'm going to miss hearing AJ come over and ask for "Wuss" (Wiggles), and Zack tap me on the shoulder saying "Pop" (Pop Go the Wiggles).   I'm going to miss tucking Aliza in at night and telling her:

"Good night, sleep tight, don't let the bed bugs bite, but if they do, grab a shoe, and beat 'em till they're black & blue."

Actually I guess I could call her and tell her that!  Grandma's going to have to kiss her goodnight on each cheek, though.

Advances in Mimicking

One of the many things I've learned raising kids with developmental delays is how important pretending and the ability to mimic is.

AJ is quite good at mimicking what he sees us do.  This past weekend Mark was blowing up a swimming pool floatie the old fashioned way -- that is, not using the electric air pump, but huffing and puffing as much hot air into it as he could manage.  And AJ walked around the room, holding his hands up to cup around his lips and going "sssshhhhhh.  ssssshhhhhh."

The other morning he woke me up, coming into my bedroom going "mom?  mom?"  And I said "hi AJ, momma's sleeping."  He came over next to me, laid his head down on the bed and fake snored.  He can be quite a little comic.

Zack, the one with more autistic tendencies, has never been as much for mimicking.  Until yesterday, that is.

I gave him the cordless phone to hold while I changed his pants, and he pushed random buttons on it (and I worried briefly that he'd inadvertently call Greece or something) and held it up to his mouth walkie-talkie style, saying "whoa?  whoa?"  It couldn't have been cuter!  I can't wait to tell his lead therapist.

So These Two Fragile X Kids Go to a Wedding....

Actually they didn't go to the wedding, they just went to the reception.  And they didn't go all the way into the reception hall, they hung out just outside in an overflow room.  It was pretty crowded and loud in there.  My dad and I were remembering at the last Fragile X Conference banquet (another loud, crowded event) there was a family there whose Fragile X son was overstimulated and he cried and laid on the floor kicking and screaming.  And all of us at that banquet have or know kids just like that, so I'm sure they expected us to be sympathetic, and I wasn't upset that their child was disrupting the event.  I was unsettled though, that they'd force him to stay in there when he was so desperate and miserable.  So no, we didn't make the boys go all the way into the reception hall.  We let them hang out where they were more comfortable.

And I, the self-proclaimed pathological picture taker, hardly got any photos from this wedding because

1.  the battery in my good camera was dead (I didn't get around to charging the camera battery this week even though I thought about it every single day), so I had to use my pocket camera, and
2.  apparently the lens needed cleaning, either that or there are ghosts hovering in almost every photo I took, and finally,
3.  My children were there. 

But I managed to get one or two good shots of the bride (my cousin Katie) and groom, and I have concluded that a wedding is a much more tender, emotional event when you've known the bride since she was an infant.  She was a most gorgeous bride, too.  If only one of those times I thought about charging the camera battery, I'd have actually done it.

My mom, dad, Mark and I took turns corralling and supervising the boys so that we could tag-team eat dinner, chitchat with wedding guests, listen to toasts, and clink-clink-clink-clink our glasses to get the bride and groom to kiss.  And, probably as a result of our preplanning and our organization and the added help of grandma and grandpa, the whole thing went pretty well.

Aliza bounced around, playing with my cousins' kids

and her cousin Jocelyn

and eating all the Hershey's Kisses off our table.

Isn't it amazing what she gets away with when we are preoccupied?

But while the boys didn't much enjoy the wedding, they definitely had a ball the next morning at the hotel pool.

Aliza also rejoiced in the luxury of the swimming pool.

The boys have scared me a little with how relaxed they got exactly two times in their lives.  The first time was the first time I gave them Clonidine.  They were both so dazed and glassy-eyed, I called the doctor, very alarmed.  The second time was today.

The hot tub at the hotel wasn't very hot, and the sign said it was for ages 6 and up.  So we figured if Aliza was allowed in (with adult supervision, of course), the boys, at 5 1/2, were close enough to 6 to give it a try.  Well, they loved it.  They loved the warmth and the jets.  And Zack was so relaxed, I thought he might take a little nap on my shoulder.  I started to encourage him to get out, it was so out of character for him to be that calm.  I mean, this is the kid who can't stand still, ever -- if he can't move around, he'll just jump in place.

It was nice to see them so relaxed, though.  We are wondering whether we should get a jacuzzi put in at home, strictly for therapeutic purposes, of course.  You know, after our powerball numbers come in.

Acronyms I've Become Familiar With

I've always used acronyms.  I've always gone to the YMCA, RSVP'd ASAP for parties where I had to BYOB, and ate PBJs and BLTs and drank OJ.  Lately I really appreciate the AC.

The special needs world taught me a whole new list of acronyms.  Now you might hear me utter any of these in regular conversation:

ECSE - Early Childhood Special Education
ESY - Extended School Year
DAPE - Developmentally Appropriate Physical Education (gym class, in the typical world)
FAPE - Free and Appropriate Public Education
BIP - Behavior Intervention Plan
IEP - Individualized Education Plan (what we've had through the school district ever since the boys turned 3)

IFSP - Indvidualized Family Support Plan (what we had through the school district before the boys turned 3)

PCP - Person Centered Plan
FST - Family Skills Training (ABA therapists helping me learn how my kids think and function)
FBA - Functional Behavioral Assessment
IDEA - Individuals with Disabilities Education Act

LRE - Least Restrictive Environment (what our kids are supposed to be educated in)

PECS - Picture Exchange Communication System  (tiny little square pictures of things like The Wiggles and Doritos that I find all over my house)

ADL - Activities of Daily Living  (and how are you doing with your ADLs?)

DD - Developmentally Delayed

FERPA - Family Education Rights and Privacy Act

OT - Occupational Therapy (or therapist) (learning to play, eat, drink, and perform their ADLs)

PT - Physical Therapy (or therapist) (swinging, bouncing, jumping, stretching, etc.)

SLP - Speech Language Pathologist

ABA - Applied Behavioral Analysis

SCUBA - Self Contained Underwater Breathing Apparatus (just kidding about that one)

So now if I were to say this you'd understand:

My kids qualify for ESY through ECSE and will learn to use their PECS and work with their SLP in the LRE, and then they'll have DAPE which their IEPs require because it helps them work on their ADLs and PT, according to the IDEA. 

1, 2, 3, Yay!

I forgot to mention AJ's counting in the last post.  He started out just chanting the numbers that he's heard a zillion times ...

"un, two, ree...."

And he'd point randomly at his shirt, as if he were counting something.  Then he progressed to ...

"un, two, ree, or, .... ix ...."

I think he skipped five. 

Now Zack has started saying numbers!  I heard him this morning walking down the stairs, just like his brother has been doing ....

"un, two, ree ..."

I asked him to say "one, two three" for me later, and he wasn't having anything to do with me.  He was pretty focused on his chocolate milk and the first of many Diego episodes we'll watch today.  But I heard it, and I'll keep requesting it.  And I'll tell his therapists I heard him, so they can start working on counting!

Two Word Sentences

The boys' verbal development has been progressing in spurts and jumps.  It's like they know the words and terms, they just have to develop the ability to say them.  The words are in their little heads.  We just have to puuuuuullllllllllllllllllllllll them out.

AJ's a regular blabbermouth lately!

Mark told him to sit down and watch the Wiggles (rather than trying to mess with the TV volume and channels) and AJ muttered "sit down."

I washed his hands in the bathroom and he reached for the toilet on his way out.  I said "don't touch!" and AJ repeated, as he walked out into the hall, "don't touch."

AJ goes outside to play during his breaks from therapy, and he can't open the back door so he has been taught to look up at whoever is working with him and say "help me."  Or more like "hep me."

When we show AJ pictures of either him or his brother, he thinks they are all of Zack.  Any picture of one of the two of them, he'll point at and say
"Sack." (Can't seem to pronounce the Z quite yet.)
Then we'll say "no, that's you." 
And AJ will say "you?" 

And then we'll say "no, say ME."
Then AJ repeats, "me."

What can you do -- it's confusing being identical twins, even if you didn't have Fragile X!  Sometimes we don't know who we are looking at in pictures, either.

AJ also has invented a name for his grandpa, which every good grandson should do; he calls him Pa.

Zack's latest big verbal accomplishment is a bit less fancy -- he came up to me wanting me to get him some chocolate milk, and while I tried to get him to say "milk" he tapped me on the shoulder repeatedly, saying "mom. mom. mom. mom. mom. mom. mom. mom. mom. mom. mom. mom. mom. mom. mom. mom."

It's the most beautiful word.

A Short and Wonderful Staycation

A lof of folks are under the mistaken impression that Minnesota is landlocked, being in the middle of the country.  Not so.  We have lakes  (10,000 of them or so) and we're not afraid to use them!

The only thing that kept the boys from going straight to the middle of the lake was the rope with the blue floaties.  Makes me wonder what it might be like when we take them to Galveston next summer, where most of the beaches don't have a safety rope.  If they do, it's much further out and meant to deter adults and adult-sized children from swimming with the sharks.  As fun as it was, it really made me appreciate the joys of a fenced in swimming pool with no deep end.

I think that when we take the kids to Galveston, there won't be much sitting-on-a-beach-chair-relaxing-in-the-ocean-breeze for me.  And that's okay.  Hopefully they won't keep me so busy saving their lives that I won't be able to get a few good pictures!

Our lake staycation today was to celebrate our niece/cousin's birthday.  It was way too windy to light a candle for her to blow out, but she faked it really well.  Happy Birthday Rachel!

And then we sang Happy Birthday, and everyone ate cupcakes.  Because really, what says midsummer afternoon better than a bunch of wet kids in swimsuits, eating cupcakes?