I started this post last week but couldn’t seem to finish it.

My great-aunt Iva passed away two weeks ago after a long illness.  She would have been 91 next month.  She was born into a large, farming family in 1917.  She not only graduated from highschool, which was very unusual for girls kids from poor Maine farm families in those days, but she even went on to became a nurse.  She moved far from home and married but never lost touch with the family she left behind.  She returned to “the old farm” every chance she had and I, for the longest time, didn’t even realize that she had another house in another state!  She was a constant presence in all of our lives.  She lived a blessed life and we miss her very much. 

After the service there was a gathering at her son’s home.  The pastor said it was to be a “small” gathering but since she was one of 12 kids, with 7 kids of her own and lots and lots of grandbabies, nieces, nephews, cousins, etc. “small” is a relative term.  Her son’s home was full of people I see all together only a few times each year. 

We decided to take Monkey with us to just see how he’d do and he did very well.  I received so many compliments on his behavior.  He wandered amongst the relatives and let them admire his curls (they drive the old ladies wild with envy ;-)), he was quiet and content to move among them.  I sat beside him and named everyone in the room that I could point at and he played along, though there’s no way to know if any of the names stuck.  I wish there was more I could do to teach him about the lives these amazing people have lived. 

More than that though, I wish I could give him the sort of family I grew up in.  I had 3 siblings of my own and dozens of cousins.  I won’t even attempt to guess at how many 2nd cousins there were as well.  My family was a social group all to itself.  Today’s standard of small families seems so lonely to me right now as I watch that older generation dwindle in size.  Monkey has 7 cousins and I’m grateful for that, of course, but I do wish he’d know what it was like to never have to worry about friends that first day of school because there were likely to be 2 or 3 cousins waiting for you at the door.

I’m feeling a very strong urge right now to move back home.  I love the city and what it offers to us educationally and FX-wise but I really want to sit on my back deck and look at woods I played in as a child, woods that my family has owned and hunted on for generations.   I want to yell across the street to my aunt and uncle.  I want my cousin to pop over to babysit.  I want my grandfather to come for a visit and know that the dream he had of his grandchildren building on the land he’d purchased had come true.  I don’t know how much longer I have to make that dream come true for him or for me.  No one does, I suppose, I’m just more aware of it now than I’ve ever been.

Our first research study!

We received an e-mail about a study being planned at the Waisman Center in Wisconsin.  This is the first study that I’ve seen that Monkey fit the age range for and we decided to inquire.  We’ve been accepted into the study so we’ll be making the trip sometime next spring.  In case anyone else is interested I’ll include the e-mail here.

Hello

We are recruiting families for a longitudinal research project designed to investigate the language learning difficulties of boys who have fragile X syndrome and the ways in which autism symptoms might contribute to those difficulties. Boys with fragile X syndrome between 4 and 10 years of age are eligible to participate. Participation would require visiting the Waisman Center on the campus of the University of Wisconsin-Madison. The costs for eligible travel expenses, including hotel and airfare, will be covered by the project. Because the project is longitudinal, we will ask families to return for additional testing 1.5 years after their first visit. For more information and to learn if your son is eligible, contact Dr. Len Abbeduto (abbeduto@waisman.wisc.edu or 608-263-1737) or Susen Schroeder, M.A. (sschroeder@waisman.wisc.edu or 608-263-5145) or Emily Porter (ekporter@wisc.edu or 608-263-5145). This research is approved by a University of Wisconsin-Madison Institutional Review Board for the Protection of Human Participants.

Leonard Abbeduto, Ph.D.
Charles J. Anderson Professor of Education, Department of Educational Psychology
Associate Director for Behavioral Sciences, Waisman Center
Director, University Center for Excellence in Developmental Disabilities, Waisman Center
University of Wisconsin-Madison
Waisman Center
1500 Highland, Room 463
Madison, WI 53705
phone: (608) 263-1737
fax: (608) 263-7710

Still here…just sick.

Migraines, stomach viruses and migraines again have laid us all out over the week or so, very bad string of luck we’re having here!   Monkey missed 2 days of school this week due to illness and 1 due to an early release day.  He is not the least bit upset by that!

He’s been filling his time with Curious George*, trains and computer games.  The train play is quite cute.  He’s having us build new tracks each time.  He will play for a while then he tears it apart and puts it away.  He seems to like having a new set up each time.  It’s definitely more fun for me, he’s usually not a fan of experimentation but he let’s me get away with it on this.  I We want more track, maybe Santa will bring me Monkey some.

We’ve also been watching some of the new Thomas episodes, the new CGI versions are definitely different.  I’m not sure if they’re creepy or cool.  Duhdee is not a huge fan, he keeps complaining that the people aren’t supposed to move.  Progress is so hard on some of us.

*Since WHEN is the Man in the Yellow Hat called TED??  Did I miss that part of the book or did the movie just make that up?

He did it, he did it, he did it!

We have p**p in the potty.  I am SO excited!  I should probably be embarassed by how excited this makes me, actually.

The school seems to have created a potty monster but I’m not going to worry about that.  They are using PECs and Monkey has learned that if he grabs the “bathroom” picture and signs “potty” he gets to leave the room and go to the bathroom.  It’s the perfect escape and he has quickly trained them.  He’s totally taking advantage of it and they’re realizing that they’ve created a monster. 

This morning he didn’t want to go to class, he was not very well regulated at all for some reason.  As soon as he “checked in” to class he grabbed the bathroom picture and was granted a field trip, lol.  His lead teacher looked a bit put out, she knows what is going on but…that’s their problem!

When will this stop surprising me?

Jennifer mentioned in a comment that she told her son Kyle that he was not going to wear pullups at night anymore and he responded by staying dry after that.  I tried a bit of this last weekend with Monkey.  I put boxers on him and told him he needed to tell us if he needed to go p**p and he could either go on the potty or go in a diaper.  He chose a diaper.  I was pleasently surprised and hoping it would continue.

Color me gobsmacked because it *has*.  Duhdee has not been putting boxers on Monkey, he’s still wearing diapers during the day, but he is consistently telling us when he needs a new diaper.  Two nights ago he went p**p in the diaper and as soon as he was done he went to the toilet, took off the diaper and I helped him flush the contents.  This is HUGE people!  Maybe we can get this kid PT’d afterall!

I know Monkey understands way more of what we say than he can communicate, I’m not sure why it takes me by surprise every time he demonstrates it though.

Things are quite quiet.

Today is the first day I’ve felt “right” in a while.  I was down and out with a migraine most of Saturday and Sunday, yesterday I was well enough to work but I was still exhausted from the weekend of pain.  Today, my husband said I have a “glow” so that must mean I’m looking human again.  He has such low expectations of me these days, lol. 

Just because I was miserable, though, doesn’t mean life didn’t carry on.  On Saturday, Duhdee and Monkey spent time outside playing and doing fall clean up.  Our next door neighbors were out with Cupcake and so she and Monkey played in the leaves together.  Saturday night Monkey fell asleep in the exact position I layed him down in on his bed.  Duhdee did a very good job of wearing him out.

On Sunday Duhdee was running around like crazy doing errands then he took Monkey to a birthday party for a friend.  Monkey had a really great time bowling, it was the first time he’d ever gone and he loved it.  We’re going to take him back for a family trip sometime soon. 

And that is it for goings on, pretty boring really…but I’ll take it 🙂

Can you pardon a bit of nostalgia induced worry?

Here in MA we have what’s called the Minuteman Library Network.  It’s a group of 41 libraries that joined together to offer a joint on-line database.  I can log into the database, locate a book I want, request it and set which library I want it delivered to.  It’s easy and free.  I am, a big fan but it has none of the charm I recall from my youth.  Going to the library has become just another errand.

On Wednesday, however, I went to the library in the neighboring town for the first time and it was unbelievable.  When I walked through the door the smell of books hit me and I felt that sense of excitement for the first time in a long time.

When I was growing up I spent a lot of time in my small town, public library.  I still remember the day I got my very first library card.  It was peach with black writing, the size of a business card.  It had black font.  There was an image of the exterior of the library printed on the front along with the name of the library and the hours of operation.  I had to “sign” the back.  I was too young to write in script so I printed my name on the back.  I was so proud of my library card.  I also couldn’t wait until the day I had a blue one just like my mom that would enable me to use the adult stacks on the main floor.  I longed to walk through that wide doorway and get lost in that maze. 

In the meantime, though, I would walk down the stairs to the children’s section in the basement.  I loved that room.  I would grab piles of books from the shelves and settle into a bean bag chair and flip through, narrowing down my choices.  I was only allowed to take 5 at a time!  5 for a whole WEEK!  I had to be very picky.  I would stay there, hard at work until my mom came and dragged me out.  I’m sure my sister was there too but I don’t remember her ever being there with me.  I was simply lost in a world of books. 

When I’m reading I’m not really there anymore.  That used to drive my mom absolutely nuts.  She could stand right beside me and talk to me.  I would respond appropriately and then not do what she asked.  When she came back, frustrated, I wouldn’t even remember what she’d said initially.  I still do this to Duhdee sometimes.   He doesn’t get mad though, he just rolls his eyes and repeats the conversation.  Sooner or later he’ll learn that he should wait until I put the book down and make eye contact before proceeding.

Anyway, when I walked into that library I realized how much I had been missing about going to the library.  I’m certainly not going to stop using the on-line catelog but I’m going to set my pick-up location to this new library.  It’s not on my way to or from anywhere.  I’ll have to make it a special trip like it used to be.  I really want to share this with Monkey too, he already has a great love of books though he cannot yet read.  One of my great fears is that he won’t be able to learn that, so many of our kids struggle with this.   I’m not sure he can handle the atmosphere either.  He has no “inside voice” when he’s excited, but I want so badly to see his face when he walks into that room and sees all those BOOKS just waiting for him that I’m going to risk the stares and comments from the other kids and the staff when he’s noisy. 

I don’t want to stop pushing him to expand his world out of fear of failure.  I would consider that a profound failure on my part as a parent.  So I’m trying very hard to be realistic in my expectations in light of his limitations but this one is going to hurt if it fails badly. 

Getting closer to potty trained?

Monkey has hit a bit of a plateau on potty training for a while now.  We had him on a schedule and he was fairly well catch trained at one point but then he began resisting our efforts to go on the potty and we backed off a bit.  In his new classroom at school he has been resistant to using the potty as well.  So we wait.

We’re finally getting signs that he may be progressing in the BM area, he is coming to us and telling us that he’s had a BM and demands a new “‘per!”  It’s (a very small) something but we’re back to hoping we may someday actually succeed here.

I’ve always heard that the feel and learn style pullups are a waste (expensive and not very useful for training ultimately.)  Has anyone switched from diapers to these pull ups and then had potty training success?

Don’t mind my bragging

Sometimes we’re almost brilliant, if I do say so myself.  Check this out…

Back story:  Last year we had zero worthwhile communication with Monkey’s teacher.  Every child received the same handout (no individual comments) and we received the verbal “he had a good/great/challenging day” reports and the cute stories but when it came time to sit down last June to hear reports we realized we had not been given anything worthwhile all year!  According to the daily verbal reports he was the model student but when we had to meet to discuss placement for this year suddenly he needed to be in a substantially separate classroom, he was not progressing in his placement.  We were not happy with this for obvious reasons and we decided it would not happen again.

So…we developed, along with our advocate, a communication sheet.  Monkey’s new teacher filled in the schedule and the school behaviorist defined the numbering scheme.  It ended up looking like this:

communicationplan

Pretty nifty, no?  But wait! It gets better.  We finally sat down with Excel on Monday night and plugged in all the numbers and we used the charting tool to come up with line graphs for both regulation and participation.

Regulation:

Participation:

Cool, eh?  Already we can see that Monkey’s regulation (and thus participation) are falling off drastically after snack and not rebounding until playground.  We’re asking the teacher to work with the OT to put in some sort of intervention in the book/group work area to try to even out the drop. His art time have been improving a great deal over the last few days so we’ll hold off there and see how that shapes up.

We NEVER could have done this last year.  I am so pleased with how this is working out!