Haircuts

The two cutest boys got haircuts this week.  And by that, I don't mean we went to Kids Hair and they sat nicely and watched Diego on the TV while sweet ladies buzzed and trimmed them and I took pictures, and they were so still and well behaved they both got a lollipop.  No, not at all.

I mean I plugged in my razor with a long extension cord, selected a close but not too close trim setting, and then I chased them around the living room, trying to buzz off a little hair without hitting them in the head with it, dropping hair all over the room.  It creates a great mental picture doesn't it?  That wasn't working too well, so Mark wrapped his arms around them and held them tight like little mummies so I could get at their heads.  The razor does a good job but there's still some hair behind the ears and at the neckline I can't get, so I have to use actual scissors for that.  AJ was somewhat cooperative for that but Zack was having nothing to do with the scissors, so we waited a day or so and then I laid him flat on his belly, held his head on the floor nice and still, and trimmed that long hair around his ears.  He didn't love it, but he has a crisp looking haircut now.  It's not like I can go pro or anything, but it's better than the mullets they were sporting.  Here's the after picture -- a day or so after:

From a distance, not too bad.....

Aliza-ism

Frequently when Aliza asks me how I know something I'll tell her I know everything.  So here's a conversation we had this morning before leaving for school.

Me:  ......because I know everything.
Aliza:  You don't know everything.  You don't know how to say "ice cream" in Spanish.
Me:  I do too.  It's "helado".
Aliza:  No it's not.  They changed it last year.

After I got over laughing I said

Who changed it, the International Language Control People?

The Three Happiest Children in the World

Can you feel the love?

Time to see the Cardiologist

So, it turns out we are due to see the cardiologist again -- actually we were due in January of 2009.  Oops.  I called to make an appointment today, but doctors' hours appear to rival bankers' for their brevity.  It was 11:30 AM, and apparently they close up shop for the day at 11 on Fridays.  Good deal, I'll try again on Monday morning!

I remember this doctor.  She offered Fragile X testing to any family members who wanted it.  At the time we weren't able to think that way.  Since then though, both my parents have been tested as well as a few other relatives.  Specifically I remember her offering that, though, because I think I'd like to have Aliza and me tested.  Obviously I'm a carrier, but it would be interesting to know my actual repeat number (click here to see what I mean by "repeats").  Carriers of the Fragile X gene can have a variety of health issues of their own, I'm gradually becoming aware of those.

I'd like to have Aliza tested because obviously we need to know if she's carrier both so she can make informed decisions when the time comes for her to plan her own family, and so we can watch for issues carriers have, if she is one.  I'm feeling pretty confident she isn't a full mutation (click here and scroll down about 2/3 of the page to read what I mean by "full mutation".  You didn't know this was going to be such a biology lesson, did you?  Sorry, all done now.) but I need to know if she's a carrier before she gets old enough that I have to talk to her about it.

A Visit with Our Favorite Developmental Specialist

Yesterday we had an appointment with our favorite developmental specialist, Jan. We got an updated prescription for diapers (after age 4, the state pays for diapers -- it's called "incontinence". For about a second that depressed me, and then I thought, "hey, free diapers!"). I ran to Target this morning to get them. I'm getting the largest size diapers they carry -- size 6. We need to get these boys potty trained because I don't want to know where you have to go to get diapers bigger than the ones they carry in the baby section at Target. Don't want to know that at all. Either they get potty trained soon, or they must stop growing.

And we are changing Zack's zoloft prescription from a liquid to a pill. He can swallow pills great if they are relatively small and buried in a spoonful of applesauce. The liquid is pretty bitter even though the pharmacy adds a grape flavoring to it, and Zack fights taking it. I don't blame him. If a whiff of it hits my nose, my eyes water. It's heavy stuff.

I'm trying to talk Jan into coming to the National Fragile X Conference next July in Detroit. She is still considering it. She gave me her email though so when I get updates on the medications that are in clinical trials, I can email her the information, so I may have to send her some information about the conference as well. I'd love to see her there!

The boys did well, otherwise, at their appointment. They are around 43-45 pounds (a rough estimate since they won't stand still on the scale long enough for it to register a weight) and around 44 inches tall (yep, another rough estimate).

Zack showed Jan he knows different body parts, but AJ is not a performer. He was too shy to show her anything he's learned, but she knows that about him.  Mostly they both do well when we are there, they love climbing up on the exam table, trying to poke around with Jan's computer, and shutting off the lights.  They don't love the physical exam and all she does is listen to their chests and look in their ears and mouth.

People with Fragile X Syndrome can have a variety of other problems, one of which is mitral valve prolapse, a heart condition.  The boys' hearts were tested at least a couple of years ago -- I think maybe when they were 2; by a pediatric cardiologist.  I was wondering whether we need to have a test done again to check for that condition.  From what I understand, it can develop at any time.  Jan is going to check and see when the last heart test was done, and let us know if it's time to do it again.

Another fun problem FX kids can have is seizures.  They can begin occurring anytime after at 4.  So we are watching the boys for that as well.

Birthday Recap

We were up in the air as to what to do yesterday for the boys' birthday.  They don't know it's their birthday, it's just another day to them.  They are oblivious.  Anything you might normally do for a 5 year old's birthday is just going to feel like a big bother to them.  They don't like cake, they don't like parties, they don't play games.  We really thought we should try to do something they would enjoy though, and make it "their day".  If for no other reason, than because Aliza needed to see that we made the boys' birthday as special as hers was.  So, we thought, what do they love doing?  Among a handful of other things (literally, not more than 5 or so), they do love swimming.  It's the middle of February and we don't belong to the Y anymore; where could we take them?

After brief discussion, we ended up going to The Great Serengeti, in Owatonna.  It was kind of small, but perfect for them.  All three kids had such a fun time.

We very nearly had the place to ourselves for the first hour or so, it was marvelous!  When the kids had had enough swimming, we tag-teamed changing the boys back into dry clothes and then I took them out to the lobby while Mark and Aliza got dressed.  AJ kept threatening to run down the hallway - he'd take off then turn around to see if I was chasing him.  Zack just stood in the corner and jumped up and down, clapping his hands and going "EEEEEEEEEEE".  He did what you might call the autism dance.  A couple of men were talking a few seats away from us, and one of them left and then the one still there stared at Zack a bit.  I pretended not to notice.

Now you'd think that they'd be all tired out from the water and swimming and extra excitement and would just relax the rest of the day, wouldn't you.  But you'd be wrong.  They came home full of energy.  They bounced around the house, wailed in agony at the my choice in videos, dragged blankets off beds and around the house, knocked books off the bookshelf, and created general havoc.  We put them to bed as soon as we could.  Happy Birthday to Zack & AJ!

We didn't have cake or cupcakes.  I did that the first few years, but they don't eat it, and Mark, Aliza and I don't need it.  I'll get a cake when we celebrate their birthdays with the family, when there's more people around to eat it.

Tonight we took them out for dinner at Red Robin, another activity they don't necessarily love but we do anyway for a couple of reasons; 1, they need to learn how to behave at restaurants and eat restaurant food, and 2, we had coupons for two free burgers.  We ordered them a grilled cheese and chicken strips, and yet again they ate nothing.  We brought it all home so we can keep it in the fridge for a few days and throw it away around the end of this week.

Birthday Boys!

Five years ago today, on a cold and quiet Monday morning, the population of Burnsville grew by two. 

Zack is on the left here -- you can tell because he was 1.5 pounds smaller than AJ, he's the peanut in every picture, while AJ is the big guy with the chubby cheeks.

Smaller than a naked Cabbage Patch doll -- well, Zack was smaller anyway.  They both seemed so itty bitty to me, although now I know so many people who've had much tinier preemies, I know they weren't small at all.  They were good-sized twins!

Six weeks old; this is their birth announcement picture.  Those cute outfits were a gift from their Auntie Linda!  Looking back on it now, I don't necessarily think this is the best picture of them, but at the time I thought it was.

My little boys, showing their identical-ness (identicality?) by sleeping in exactly the same positions.  Aaawwww......

In their baptism outfits -- at 4 months old.  This was a tough day for them, they screamed all through the service.  You know how a lot of babies will be fine at their baptisms, until the water is poured over their heads, and then they start complaining?  These two were the opposite.  They wailed and hollered until the water was poured on them -- that shocked them into quieting down, at least for a few seconds.

Aliza with her two brothers.  Not sure how old they are here, but it was obviously that first summer -- so they are between 4 and 6 months.

I have just always loved this picture, where they are laughing at each other.

One more:

Their first Christmas!  I sure wish I remembered what Mark was doing behind me to get them all to laugh like this.  It must have been hilarious!

Advice of the Day:  Take thousands of pictures of your kids when they are babies.  Because you'll never get tired of looking at them!

Melatonin

This Fragile X mom I know on Facebook posted this morning about how her doctor has told her Melatonin may not be safe for her son to take anymore, and it's all that has been getting him to sleep at night.  She was shocked and upset, understandably, I'd feel the same way if Clonidine was suddenly unavailable, that's the only thing that I've seen effect a drastic change in our boys' sleep habits.  Anyway our boys take Melatonin too, it was actually the first drug we tried when they turned 2, to get them to sleep better and longer, because it was thought to be the mildest, safest thing we could give them.  So I did a little research online about Melatonin, and couldn't find any shocking recent news reports saying it might be unsafe to take long term.  Which was what I was looking for.  Nothing specific was out there.  I did find lots of other interesting facts about Melatonin, though.  Here's some of what I was able to dig up:

• over the counter versions of Melatonin can contain synthetics and harmful additives
• no one should ever take more than 7 MG
• in small doses, e.g. 3 MG, it's not considered harmful although no long term studies on children have been done
• it prevents ovulation
• it can be harmful when mixed with steroids
• don't take if you have an immune deficiency
• melatonin based drinks (popular with teens) can be harmful; imbalances body functions
• taking melatonin can cause a decrease in the body's natural ability to produce it
• Melatonin has been shown to be an antioxidant, geroprotector and anticarcinogen.

from mayoclinic.com:

"It's thought that taking melatonin for longer than two months may be harmful, and the best dose of melatonin isn't certain. If you take melatonin, be careful during daytime activities, such as driving or operating heavy machinery. Talk to your doctor before taking melatonin, especially if you have any other health conditions.

If you take melatonin, make sure the supplements are made of artificial ingredients, not made from animals. Melatonin from animals can contain viruses or other contaminants."

from benbest.com:

"Melatonin was discovered in 1958 and named for its skin-bleaching effect upon melanin (skin pigment)."
 also
 "Melatonin reduces estradiol levels in the blood and inhibits aromatase expression in human breast cancer cells, both of which suggest that melatonin could be of of value in the prevention and treatment of breast cancer "
 and
 "Melatonin also reduces the hyperphosphorylation of tau protein, which leads to the neurofibrillary tangles of Alzheimer's Disease"
 and
 "Dosages in excess of 3 to 6 mg (milligrams) should not be necessary, and often lower doses are preferred, and equally effective for induction of sleep (if not the other benefits). "

from herbal-supplements-guide.com:

"Reported melatonin side effects include headaches, nausea, depression, nightmares and vivid dreams, irritability, abdominal cramps and dizziness."
 "Melatonin facts also point to negative effects on the reproductive system as well as decreased sex drive in both men and women."

"Since melatonin is a hormone, it can affect many internal body processes. Melatonin facts show that those with depression might experience worsening symptoms. Others at a higher risk of developing melatonin side effects are people with liver disease, seizure disorders and high blood pressure."

She mentioned that her son is showing symptoms of depression--how scary in a 9 year old.  I'm glad I had the motivation today to look up this drug that I've always assumed was the most harmless medication I could ever give the boys.  Good to know what we should be watching for, as the years go by, if we continue to use it. 

My Letter to the Casting Directors at Extreme Makeover Home Edition

When my sons were diagnosed with Fragile X Syndrome in April of 2006, I felt like I'd been punched in the stomach. I was depressed and couldn't stop crying for months. On the bad days (which averaged to be around 2 days out of every 3) I was ferociously jealous of people with "normal" kids. Anybody who complained about how their kids talked back to them (at least they could talk!), or refused to pick up their toys (rejoice that they are capable of complicated playing and pretending!) or had friends calling or coming over all the time (be happy they have the social skills to make friends!), I smiled and nodded along while inside my head I seethed. In a nutshell, I felt enormously sorry for myself that everyone else but me had a perfect family.


Then I became aware of Claudia Burrows.

Claudia has three children and not one of them was spared the Fragile X gene. All three also have autism. Two of her children are grown and living outside her home; her youngest, Christopher, still lives at home with his mom. Claudia herself was diagnosed with ALS in August of 2005. Yes, this family was struck by lightening twice. Christopher requires a lot of extra care due to an immunity disorder (apparently having Fragile X Syndrome wasn't enough burden for him). He is home schooled and doing pretty well now, thanks to a devoted caregiver and his tireless mom.

Before her diagnosis Claudia worked as a First Responder for Emergency Services. When her body allowed it, she spent her life helping others. She has been an enthusiastic giver her entire adult life, despite raising three special needs children as a single mom. In her spare time she learned the ins and outs of disability laws and became an advocate for newly diagnosed families. Even with the limitations ALS now enforces on her life, she continues to life each day fully, loving her children and supporting and advocating for Fragile X families.

This is my bid to nominate Claudia Burrows for Extreme Makeover: Home Edition. She has spent her life giving, giving and giving and now that her body is weakened by ALS, her mobility is severely limited by her wheelchair, and there are only a few parts of her house she can get to. I would love to see her get a little something in return for the years and years of service she has provided to all families in need, both as an advocate and supporter of Fragile X awareness and as a First Responder.

Read Claudia's touching blog at http://claudias-family.blogspot.com/.

Obsession

Appologies, I'm a little obsessed with these neat little gadgets I'm finding for this.  I just added a counter and a map that will supposedly show the locations of all visitors.  I started the counter at 30 since I've been out here for awhile now, and it's just sad to start at 1.  I think I am the first two visitors.  I'm pretty sure I'm my most frequent visitor.  That also is a little sad, but I don't care, it's a healthy obsession.  Healthier than Cafe World on Facebook anyway.

Speaking of obsessions I found a new Wiggles video we didn't have on Ebay and we got it yesterday, and they boys were jumping up and down and quivering in excitement.  It has AJ's fave song, The Monkey Dance, and apparently yesterday afternoon during therapy AJ worked long and hard for that song, over and over!  It's a good reinforcer.  That's what they call bribes -- things the boys really love that will motivate them to do just about anything!

I got a tent shaped and colored like an igloo at Ikea for the boys, and Aliza took it over by putting her blankets all over it and inside it.  It looks like a sweatlodge now.  She spent the night in there, which I wasn't sure was such a great idea, but she slept great, she says.  I had Mark check on her in the middle of the night to make sure she wasn't actually sweating or starving for oxygen.

Both boys were up last night off and on after 4, for some reason.  I gave them their last dose of meds at 3:30 or so and managed to completely wake them both, I guess.  We tried to get AJ to lay down with us but he wanted to be up.

Time to go.  I have to work with the boys' therapists at least twice a week and Saturday morning is one of those times.  We are getting geared up to potty train.

Restraint and Seclusion

I'm on an email list that consists mostly of parents of children with Fragile X, and I can't stress enough how informative it's been.  It's been heart-wrenching at times as well, since we all share our bad times right along with the good.

Anyway, this past Sunday, one of the emails contained a link to a blog that lists school in the US, alphabetically by state, that have been cited for using abusive restraint practices.  Here it is:

http://familiesagainstrestraintandseclusion.blogspot.com/search/label/Is%20Your%20School%20on%20our%20%22List%3F%22

Notice how insanely long the Minnesota list is.  Notice too that Sky Oaks, the school Zack & AJ might attend, is on the list.  I tried not to panic and sent the email immediately to the boys' teacher, Sarah, who is such a great and caring advocate.  I love her, whatever they are paying her, it's not enough.  She responded almost immediately on Sunday night (did I mention how devoted and tireless she is) and said that it seemed to her they had listed all the schools in MN that have a seclusion room, whether it is used or not.  They didn't cite specific abuse allegations, just listed that these schools do in fact have a seclusion room.  Sarah said that that while it's true that Sky Oaks has a seclusion room, they don't use it -- they know that seclusion and "time outs" don't work with our kids with autism.

Which did make me feel better, although clearly I've got to investigate this further.  Because I know my boys can get aggressive, and I know they don't mean to hurt anyone but Zack will bite someone who makes him nervous or upset.  And almost everyone he doesn't know makes him nervous and upset!  I have seen how our ABA therapists deal with the boys' attempts to bite; they just turn away, basically they seclude themselves as much as they can.  Because any response at all to that kind of behavior is the incorrect one.  You just have to ignore it as much as possible.  I'd hate for Zack to scream and try to bite someone at kindergarten next year and end up restrained or in a seclusion room, alone.  I'll have to ask Sarah again when I might find out exactly which school the boys will attend so I can start asking questions about their restraint and seclusion policies.

Early Monday Morning

Woke up before 4 AM. Figured as it got closer to 5, I might as well get up as Mark wasn't likely to quit snoring anytime soon. And since it's his birthday, and he needs his sleep because he has an interview today, I figured I better not kick him to get him to quit!

This past weekend was a little tough for the boys, AJ in particular.  The problem is he lost a therapist last week, and it was the one who had the Friday morning shift, the Saturday afternoon shift, and now today, the Monday morning shift.  So people keep coming over to work with Zack and nobody shows up for AJ, and he's bored and jealous, I think.  He was quite the crabby pants Saturday so we thought, we have to get out of the house -- tomorrow we're going to be out and about.  Well turns out that wasn't what he really wanted either, he was irritable yesterday too.  At Bobbie's house he slipped on the stairs and bumped his chin, and I didn't realize he was bleeding until he'd blotted most of it up on my shoulder, while I was holding him and comforting him through the trauma.  Like I told Bobbie, this is why sometimes I just wear clothes that are already stained.  Because sooner or later someone is bound to bleed on me.

Speaking of AJ though, he's started doing this cute little thing -- if you ask him a question he might put his finger to his chin and go "hmmmm", like he's thinking about it....I don't know who he picked that up from.  One of his therapists, probably!

We got the boys an inflatable climbing toy, which they are too big for but they loved.  We had it for at least 15 minutes before someone put a hole in it.    We'll find it, patch it, and reinflate it, but this is just a reminder as to why we don't get inflatable toys anymore!