Procrastination -- Sometimes Its A Good Thing

Procrastination can come in handy sometimes. Sometimes it keeps you from having to undo something that ended up not needing to be done.

I hadn't gotten around to dropping off the boys' kindergarten registrations at Sky Oaks Elementary yet. I got birth certficates, but I'll have to go through a big pile of things to find the immunization forms.

This week I found out they weren't going to Sky Oaks after all, and I patted myself on the back for not having wasted time getting the forms to them.

I can't say it came as a big shock, seeing as how the kindergarten transition meeting had been scheduled, rescheduled, and then cancelled in the past two months. It was proving pretty difficult to find a time that everyone who needed to be there, could be.

So yesterday I called the special education director for our district and asked what was going on -- what school would the boys be attending, and would we in fact get this transition meeting in before the end of the school year. She called me back within an hour and told me the boys would be attending Rahn Elementary now, which ironically is the school I liked best, when I toured the two schools with autism programs. Funny how that worked out. The kindergarten transition meeting will be next week either Wednesday or Thursday, while the boys are at preschool.

So I guess I better start digging for those immunization forms.

Neglecting Aliza

Aliza danced all over the living room Monday night for an hour, while watching Dancing With the Stars. Then it was bedtime, and she was suddenly afflicted with not one, but two sore feet. If you thought it wasn't possible to limp on both feet at once, you haven't met my daughter, the drama queen. Apparently, several hours earlier while playing outside with the neighbor kids, she'd "cracked something" in her foot. And the other foot, well, it bothers her from time to time, always right around bedtime. It's always something. She has some sort of Bedtime Pain and Ailment Not Otherwise Specified Syndrome.

She hobbled to the bathroom to brush her teeth and by then the pain was so unbearable, she was forced to crawl on her hands and knees to bed. She laid awake for over an hour, calling me every few minutes with updates on her anguish. I brought her an ice pack but somehow that just made it worse. She felt we should go straight to the doctor. I said well, if it was still bothering her in the morning, we'd talk about that.

It was still bothering her. She managed to talk me into letting her stay home for awhile and rest it. When the boys started therapy and I was free, we watched Alvin & the Chipmunks: The Squeakquel and then we colored in coloring books together.

I think she just wanted to spend quality time with me.

By 10:30 she was feeling much better and she agreed to go to school after lunch, arriving just in time for the all important lessons in gym class and recess.

I think over this long holiday weekend, Aliza and I might have to go do something fun together.

Photographs of the Disabled and Things I Must Overcome

I just can't get over how gorgeous this woman's pictures of her children are. Particularly her baby daughter with Down Syndrome.

http://www.kellehampton.com/

See, I have issues with photographs of disabled people. I hate pictures that show the disability more than they show the person. They make me cringe and look away. There are a couple of people I know of who are in the business of photography of the disabled, and working to show the person rather than the person's disability. But I don't know, I can still see it. I think the problem is me. I need to get past the fact that mentally disabled people are going to have a different expression on their faces than those who are not. I just hate that "disabled" look. Everyone has something going on in their heads, and I like for their faces to show what they are thinking.

I need to get past this and accept that when a photo displays evidence of its subject's disability, it is showing that true person. It's not criticizing or reducing that person, it's just presenting that person as he or she really is. Like this picture of Zack.



He jumps and wrings his hands and makes odd noises, and really creates a spectacle of autism. And he's doing that in this picture. It may not be pretty, but it's Zack. It's who he is. Then there's this one:



This picture illustrates how Zack likes to stuff things in his mouth, and he's truly more confident and agreeable when he's mouthing something. Not attractive, maybe, but it embodies him.

AJ more often displays a very typical child's face to the camera, but he has his quirks too.






AJ licks, chews, and mouths his fingers constantly. Reach for his hand and you'll get a good feel of slobber. That is just AJ. If I could explain why he prefers his fingers to other chewing objects, I would in a second. It's a sensory issue I just don't get.

These are my babies. I tend to print and publish only the pictures that show them looking as typical as possible, but that isn't their true story. And I want to be honest and faithful to them, and never let them think for a second that I disapproved of anything about them. Because the day is going to come when they will look at these pictures with knowing, discerning eyes. And on that day I want them to know we loved them purely and completely. Every part of them.

Milk Cocktails

Some kids have a glass of milk in the morning. My boys have a milk cocktail.

It consists of a half capful of liquid multivitamin, a half cup of almond milk (vanilla flavored), then I fill the rest of the bottle with 2% milk, and then a shot of chocolate syrup. AJ gets the sippy cup top, Zack still gets the bottle, shake well and you're ready to go.

Zack slams his cocktail; AJ lets his sit for awhile and finally does drink it just because he knows he can't have juice until his milk is gone. He used to like it, but all drinking slowed for AJ when he went from bottles to sippys. He's not as enthusiastic a drinker now.

The Sleep Situation

Last night we decided to revert to our old ways.

For over a year, we (and when I say "we" here, I mean Mark, 9 mornings out of 10) got up around 4 AM and gave the boys another dose of liquid Clonidine, to keep them asleep past 5 AM.

About a month ago we decided to experiment with that routine and see if maybe the boys were able to stay in bed on their own, without the 4 AM dose. They are getting bigger and more mature and sleeping so well, and we were not loving having that little task every morning, so we thought we'd just do a trial run and see how it went.

Result - it did not go well. Our days have been beginning between 5 and 5:30 AM, only once in awhile 6:00 AM. And they didn't wake up like other people; that is, groggy, still sleepy, having to laze about for the first half hour they are conscious. Nope. These guys woke up at 5:30 AM, with the energy of someone who'd just had a 24 oz. Mountain Dew. They ran up and down stairs, trying so hard to wake up their sister (who is NOT a morning person). They required video after video after video, none of which actually satisfied them. They climbed up on the piano and knocked things off the bookshelves. They wrestled and bit each other until they were both red-faced, sweaty and slobbery, with bite marks dotting their faces and arms.

Zack in particular had some behavior problems that I believe are directly related to his being too tired. He kept bending his leg up to his face (or bending his face down to his leg) with amazing flexibility, to bite himself in the knee, calf, or foot. He chewed on his own skin like it was gum. If he and AJ were wrestling and I came over and broke it up, Zack would drop to the floor and savagely bite himself. He was just so manic about it. I'd yell "ouch, don't bite my baby's legs!" and he'd laught at that a little, but it didn't stop him. No amount of coveted chewy or comfort toys would satisfy his need to gnaw. Although the butterflys came close!



So, we've gone back. I don't consider it regressing. It's just returning to what worked. Both boys slept until 7 this morning, a good 12 hours for Zack, and both woke up happy, calm, and contented. Very little wrestling and biting. Just a little cuddling.



I am anticipating a much calmer day with much more harmonious, peaceful children.

Baby's First Words

You know that feeling when you hear your baby's first words?  When that tiny, innocent, beautiful voice speaks understandable words for the first time it's like a song.  It's clearly the cutest voice any baby has ever had in the entire history of speaking babies, and you prod him to say the new word a million times.  Every time he says his new word, your heart swells.

Yep.  When AJ came downstairs this morning and said "hi" to me, I have no doubt it was the most beautiful sound any child has ever uttered.  And I bet there isn't a mom who would disagree with me.

Most 5-year-olds are talking their moms' ears off by now.  Most moms of 5-year-olds are just trying to get them to give their voices a rest.  Not this mom.

School Tales

Og.  We have all had enough of the rain already!  May is flying by just because it doesn't feel like May, the weather has been so dismal lately.  Once the sun comes out it'll be nearly June and we'll all wonder where May went.

I am working on the boys "All About Me" introductory documents, because I figure any day now we'll have that kindergarten transition meeting.  It was scheduled and rescheduled and then cancelled, and has yet to be put back on the calendar as of right now, but I was talking to a teacher friend of mine who said that they will most definitely have the meeting before the school year ends, so I guess I better get ready.

This week while doing my weekly volunteer session in Aliza's school library I ran into the school secretary.   The one I spoke of here, who ripped my heart out when she wrote "special ed" next to my boys' names on the kindergarten roster.  Yeah, that one.  I get a little guarded when I see her because I'm worried she's going to say something that feels like a punch.  She's a perfectly nice woman, I just don't trust her now.

The school secretary said she'd heard the boys will be attending Sky Oaks elementary, and she wondered whether I was going to transfer Aliza there as well.  I told her no, the schools are only a few blocks from each other and Aliza is pretty happy at Gideon Pond; she has friends there and is familiar with it, I don't think moving her would be a good thing for her.  She said yes, and she knew the boys would be attending Gideon Pond as well but for their special education needs and I thought, you don't miss an opportunity to say those words, do you?!

It Came!

The book I ordered from UPS, that is.

It was a book I made for my mom on http://www.ancestry.com/, on which I'd loaded all the information my grandmother Jewel had gathered in the 1970's on the Chamblees and Knierims (My mom was a Knierim, her mom was a Chamblee).  It's facinating stuff, if you've never researched your ancestors before you should definitely start.  There are lots of free sites where you can get started if you are intimidated by http://www.ancestry.com/, or if you just want to get started without paying a fee right off the bat.

I have our family tree uploaded to http://www.tribalpages.com/, which is a fun free genealogy site.  The link to my family tree on Tribal Pages is under "Links" in the right column here.   http://www.rootsweb.com/ is another free place to search for your ancestors, although that one is tied to ancestry.com, so every time you find a person it'll tease you with how much more information you'd get if you searched on ancestry.com.....

Anyway, once you have something online, I recommend signing up for http://www.ancestry.com/ for at least awhile so you can go to http://www.mycanvas.ancestry.com/ and create a family book.  You can choose the starting person and then the number of generations you want to put in the book.  Keep in mind, the more generations, the more pages, and the more expensive the book will be!

But once the site has created the book for you, there are endless things you can add to it and use to personalize it.  Backgrounds, frames, quotes, photos, clip art, comments.....I could have spent years editing and changing and playing with this book!

The best part is the personal stories my grandma gathered from talking to people.  Back in the 70's of course one had to do research by travelling and through the mail, with no internet at the ready.  She wrote people and attended family reunions and went to the libraries to look up censuses and other historical documents.  Then she wrote up paragraphs of the information she received.  It's so much more than just a list of names.  It's real people and real lives of our very relatives.

For instance, my grandma discovered an ancestor of ours named James Thomas Mabry, who was married at least twice and had many children, and it's said he had over 100 grandchildren.  One of his grandsons was John Horton Slaughter (son of his daughter Minerva).  John Slaughter was the sheriff of Tombstone and Chocise County, and there's a great deal of history written about him and how he cleaned up Tombstone.

I was lucky;  I've had a great starting point with everything my grandmother accummulated.  It really got me excited about doing more research.  But I'm interested in researching others' families too, now that I've seen what a wealth of information is out there.  Did you know that genealogy is the 2nd most common use for the Internet?  I'm going to let you wonder what is the first.  *smile*

P.S. - ancestry.com didn't pay me for any of this, but if they wanted to, I'd accept payment in any form.  Free subscription?

Is it Mother's Day Yet?

Today:

• Found a mouse in a mousetrap under the stove.  I suspected there was something under there.  I hate when I'm right about these things. *
• Have been waiting all day for the UPS guy to deliver my mother's day present for my mom.  The current time is 4:30 and he hasn't shown up yet.  They don't deliver on Saturdays.   So it's today or else Monday -- too late for Mother's Day.
• My People magazine which shows up 50 out of 52 Fridays a year, did not come today.
• Getting out of the car, AJ somehow managed to whack himself in the face with the metal part of his seatbelt.  We had to rock in the lazyboy for quite awhile as he cried and cried.
• Zack had just decided he needed a little "Pop Go The Wiggles" on TV when it was time to get in the car and pick up Aliza from school.  So he expressed his frustration by sitting in his booster seat behind me kicking my seat and screaming while we waited in the car for 15 minutes.  Then he chewed on his kneecap until it was raw.  We'd have gotten out and waited outside, but it was raining.  Rained all day.
• AJ took the juice out of the refrigerator to let me know he wanted some, put it up on the counter and knocked over my Diet Dr. Pepper all over the counter and floor.  We ran out of paper towels earlier today so I used a couple of kitchen hand towels to wipe it up.  He didn't even want the juice when I got it for him.
• Together the boys managed to mess up the other laptop, the one they like to watch some of the http://www.nickjr.com/ shows on, and it can't seem to connect to the internet.  I haven't had a lot of time to sit down with it and try to fix it.  I figure it's good punishment for them not to be able to watch it now, since their aggression towards it is the reason it won't work.  Of course this type of punishment is useless on them, they have no idea they screwed it up.

I'm going to go sit in the window and watch for the UPS truck.

*Mark would like me to clarify that he is the one who actually "found the mouse" in the mousetrap.  I would like to further clarify that I insisted that we put a mousetrap out, since we didn't necessarily agree on whether there may or may not be mice in the house.  He didn't want to and as I recall, he put it under there just to humor me.  But I fully admit that he is the one who "found" said mouse and disposed of it.  I was never anywhere near it.

Bubbles!

How we do love a bubble machine!

Lost Chewy!

Zack had this butterfly chewy toy made by Discovery toys that he was completely addicted to.  We only had one, and I despaired that we'd ever get another because I'm told Discovery Toys doesn't make it anymore.  We took it everywhere, because he was 75% calmer when he had it in his mouth.  Church, grocery stores, school, home with other kids around.....it was all so much easier when Zack had his red butterfly.  He was just less apt to bite someone or scream.

Then a miracle occurred and last weekend at the Dakota County Parent Retreat there was a Discovery Toys vendor who happened to have one, which we bought immediately and I carried it around in my purse like it was gold.  Hooray, now we had two!

Within a couple of days, in the midst of the chaos of taking 3 small children to Target, two of whom need to ride in the cart and touch everything they can reach, I'd left one in a grocery cart.  I checked with Target's lost & found twice, but whoever found it either kept it or threw it away.  Now we were back down to one.

Two days later, the one we had disappeared.  We have no explanation, it's just gone.  So there is a possibility it's in this house somewhere (or the car, or the backyard) and it'll turn up eventually.  We cursed ourselves silently for a while and then I decided it is not good for Zack to be addicted to something that is virtually irreplaceable.  We went to Target and showed him every baby chewy toy they had on the shelf, and he selected one.  Another butterfly, this one is blue.  For the first day he rejected it outright, but by day two he'd put it in his mouth a few times.  Now it's day three, and he still rejects it the first time we offer it, but he comes around after a couple of minutes.

Unfortunately it's no Discovery Toys red butterfly.  He's nowhere near as attached.  But it's all good, because we are now working on getting him to accept a variety of chewy toys, which will make life much easier in the end.

But if that darn red butterfly does turn up, I have a feeling our whole "get used to new chewys" resolve will go right out the window.

IQ Test Results; How Much to Share?

I got the IQ test results this week.  I spent quite a bit of energy thinking about whether or not I wanted to post the numbers.  The actual IQ point numbers.  And I wanted to, for several reasons; I don't want to hold back anything that might be relevant, informative, or helpful to another mom of a little Fragile X kid.  I didn't want to just do this blog thing halfway -- I wanted to discuss the good, the bad, and the ugly. I strived to be truthful.

Yet I was uncomfortable with it, for some unknown reason.

So I have decided not to publish the actual numbers.  I don't want a therapist or teacher who reads this to, even subconsciously, use the number to assign expectations, and lack of expectations, on the boys.  I don't want it to define them.

However, while I won't divulge the number (and my boys did get identical IQ scores!), I will say that in the description of what the numbers mean, the boys' number fell within the range of "moderate developmental delay".  Not "profound" or "severe".  This I found encouraging.  "Moderate", to me, says somewhat minor.  Not "extreme", but just "moderate."  I can live with this.  I can work with this.  I can attach great expectations to this.

I can also be assured that this IQ result is an estimate, based on how few of the questions the boys actually gave an answer to.  I was there, I know what they can do and what they can't, and I know that just because they had trouble answering some questions doesn't mean they didn't know the answer; it may just mean they weren't capable of focusing.  They couldn't settle down enough to take a test.  It would be like me drinking a pot of coffee and then trying to sit down to write a blog post.  Not that I have ever done that before.

I am further convinced it's an estimate since they got exactly the same score, and I witnessed this test -- AJ was a lot more cooperative than Zack was.  The tester barely got a glance and a snort out of Zack.  And yet Zack scored the same as his brother.  Clearly an assumption was made that Zack would have responded the same.  I don't have a problem with this assumption, it's probably true.  And it's one more reason not to attach a great deal of importance and attention on the final "score."

So that's it.  The great IQ test experience is over.  And not nearly as traumatic as I imagined.