parent teacher meeting

We had what turns out will be our last parent teacher meeting with Dominic's SPED teacher that he's had since Kindegarten.  She is retiring early and her last day is next week. We are very sad.   We have not yet met her replacement, but I expect to get the replacements email next week and will be scheduling a face to face meeting with her as soon as our schedules allow.  Right now, there's no telling how it will all play out, BUT, the good thing is that this particular replacement is trained in using the ABBLS program which Dominic is on.  The SPED teacher we thought was going to absorb him (she has grades 3-5 at Audobon) actually is not trained it it. So we'll see how that shakes out.  We're a bit nervous, but hopefully it'll work out well.

We did learn that we missed the budget staff shrinking ax because of the nature of the ABBLS -  it absolutely requires 1 on 1.  As such our SPED was able to get the budget person to convince the principal that Dominic needed that 1 on 1 coverage because the IEP requires he use the ABBLS.  She agreed with us in our feeling that should they ever stop providing the intense 1 on 1 support for Dominic that his progress will drop off.

So, progress since last May when he was last evaluated on the ABBLS

Cooperation and Reinforcer:  from 86% to 92%
Requests:  from 32% to 39%
Labeling:  from 10% to 15%
Intraverbles:  from 0 to 6%
Syntax and Grammar:  from 13% to 15%
Reading:  from 21% to 32%
Math:  from 5% to 7%
Writing:  from 9% to 12%

Slow progress, but he works SO hard for each percentage point...

The 2 hours per day verbals that they track were interesting when compared to this section of time last year.  This year, he's hovering around 400, last year was 150-200.  Whats really cool, tho, is each week now there's a whole page worth of sentences that he's said spontaneously that the para's are actually documenting for us.   some of the more amusing ones from this last week:
"I watched Soup" (we think he meant Ratatouille)
 "I can't see you" (when the para told him it was time to work, he covered his eyes and said it)
"I want coffee" (this is Rod's fault. He gives him tastes)"
"Its a breaks"
"Horse go Running"

The funny personality stuff is showing at school too, in interactions with peers.  She remarked that things they don't keep data on - like eye contact - are much improved.  There's an older woman who occasionally has subbed for his para's, who hadn't seen him yet this year and was in a week or so ago.  she was supervising Dominic at the computer.  Someone walked by and said Bye Dominic, and he stopped, turned his whole body, looked at her and said "Bye".  The lady about fell off her chair.  thats the kind of improvement that isn't quantifiable in the data they take but is huge for Dominic.


 

Another one of those inchstones

It snowed last night.  A whole whopping 1/4" or so.    Dominic was SO excited at breakfast, he kept saying "snowman, snowman".  To which we said "sorry kiddo, there's not enough snow".  I'm working from home today because its school's parent teacher conferences (we have ours later) and he came into the office a while ago and said "outsi, outsi, snowman".  I said no again.   When I wandered into the living room a bit later, he'd opened the closet, dug out last years snow boots and was attempting to put them on.  I caved.  Amazingly they still fit.  

Bundled him up with hat, gloves, and boots. (First time I've seen him manage to get a glove on by himself with all the fingers in the right holes... but that only worked for the first glove. The second he needed help with.  But thats not the small change I'm excited about.)

As background, he's probably got 8 sets of mittens/gloves running around because he tends to lose at least one pretty much every time he goes outside to play and we have to wait for a thaw to go find it.

Midway into his time outside, I checked on him and he was missing his gloves. I figured the usual had occured.

When I called him in after he had played for about an hour, I said "Hey, where're your gloves?".  He looked at me, cocked his head like I was stupid, and pulled BOTH of them out of his pocket.

:)

*not* scripted, also hilarious

Its supposed to freeze tonight and snow tomorrow.  I just moved the car inside the garage because I have a cold and no desire to scrape ice off windows at 7am tomorrow.

Its a snug fit, and the car butts right up against a 3x3ft or so cardboard box we use to gather recyclables before taking them to the recycle can outside.(which currently is snug against the lawnmower which we had to get back out of the shed this weekend because the weather has been ridiculous and someone told the grass it could grow again)

So I parked the car, closed the garage door to the outside and came in. Dominic slipped by me to the garage, surveyed things, and promptly started tugging the recycle box.  I came inside to blow my nose and the next thing I knew, he said "I GOT IT!" and dumped the recycle box in the kitchen.

:)

Scripted, but hilarious.

Scripting is actiing (or speaking) a role you've observed, in Dominic's case generally from something from the background Disney movies he likes to have on.

Background - Dominic watched Jungle book today.  You know, with Baloo and the bear and various other animals interacting w/each other.

Tonight I gave him his new (size 8, how on earth does this happen?) long sleeved pajama's that coincidentally have  an appliqued bear on them. . He repeatedly said "like it, like it, jammas".

So we went downstairs to brush his teeth and tuck him in and what does he do but grab the stuffed pig (from Lion King. I think it was pumba or timon, i never can keep those straight) from under his covers, put it behind him and have it bite his butt.  He kept the "biting" (which hea told me was eating) up thru tooth brushing and using the toilet, and then put the pig back under the covers at the foot of the bed when i tucked him in.

Hilarous.

"Reading" under the covers

So, doing 9 blog posts in a row kind of made me run out of things to talk about. Hence the week off.

Also, its been a busy week.

But, I have something cute to share.

In rearranging the kitchen over the weekend (see above mentioned busyness), I found some of those battery operated votive candles (halloween themed). Dominic immediately was taken with them. Which is fine with me, I’d rather he play with fake candle flame than real. He’s slept with them the last couple of nights. (I’m surprised that they are still working).

Kind of parallel, he’s been more aware of reading material. And picking up his books and saying “reading” . To which we promptly read to him.

Anyway. Last night, he took to bed the DVD insert from the Finding Nemo movie. And his little votive candles. He tucked the votives underneath his teddy bear, and then opened the insert up and dove under the covers looking for all the world like he was going to read by candlelight.

It was adorable.   If he does it again tonight, I'll attempt to take a picture.

In reality, we’re not seeing much of actual word identification at home. Letter identification, sure, but not quite word identification. He’s got 6 words sight mastered at school, but I’m not seeing it generalize.

Randomness

We've been finding the dog randomly sitting on chairs he never used to sit on lately.  Today I figured out why.

Dominic is now lifting Shanti up to the chairs and  posing him.  Then sitting with him.   Random child.  Yes the dog is wearing a plaid flannel shirt.  See said random child.  Whats next, tea parties?

Cool!

As Dominic was getting off the bus today, independently, he turned and said "bye" to the bus driver.  She and i were both impressed.

I got to do his homework with him this afternoon.  Homework consists of having him do some handwriting practice and listen to a story. Its more there to set the pattern than anything else.  He is more comfortable with tracing now, but struggles tremendously with the fine motor skills to write without tracing.  He does attempt to write his name but its completely illegible.

An old post I found in my drafts... Moms Musings on Tenacity

I wrote this in 2009, and apparently never published it. I wrote it from a perspective of finding the energy of the Bermuda grass to keep going in finding things that work for Dominic.  Its interesting to look at it and remember how hard we were fighting then to stretch every single dollar to make Alpine do-able.  Now that we've finished our time at Alpine things are much easier.   and for reference... the bermuda patch still tries to send up shoots but i've basically beaten it.   I never did sit on the Yucca either.  Metaphors, gotta love 'em.

----------------------


This summer has seen lots of yard work as the past several I just didn’t get out as much as I should’ve to maintain my flowerbeds, manage the weeds (and mint, someone remind me why I planted mint to begin with???), deadhead the flowers so they’ll bloom, etc etc.

This summer I have tackled the last part of my yard to tackle. It’s a little 7x15ish patch on the South side of the house that up to this year was 3+ ft tall weeds and Bermuda grass,and one lonely yucca plant that Rod bought me almost a decade ago

Our first attempt was to mow the weeds down as low as we could, pull out the area around the yucca, and lay down the thickest weed block fabric we could find,and cover with mulch. We were in a hurry and it was an afterthought because we bought too much mulch and had to get it moved out of the driveway before the roofers showed up to fix the roof. Just cleaning out around the Yucca, I pulled an entire garbage bag of Bermuda grass root systems out. That stuff is… amazing.

About 2 weeks later, I noticed that not only was there grass coming up around all the edges of my lovely mulch patch, but that entire sections were now LEVITATING 4-6 inches off the ground as the Bermuda grass underneath proceeded to ignore the weed block fabric and grow anyway. So I went out with my gardening gloves and weed attacking tools and started working around the edges of my patch to try to get the root systems up so that the Bermuda would stop growing. I pulled out 2-4 ft sections of root, I pulled out whole lumpy masses of multiple root systems… I pulled out 2 garbage bags worth of roots and still didn’t make it even half the way around.

When my parents were here, my mom helped me with some and shared that 35 years ago in the first house they bought, they had to have the septic system fixed and it was 12ft under. When dug up, the problem was the Bermuda roots eating holes in the system. We pulled another bag of roots up and noted that my contractor strength weed block had already, in less than a month, had weeds grown right on through it.

I just went out and attacked the patch again. An hour and a half and another bag of roots down, and I’ve ALMOST made it around the patch (every time I go out, I have to redo all the parts I’ve already done before getting to new parts). Several places I lifted the fabric up and found MASSES of white Bermuda roots trying like mad to find their way to the sunshine. I kept having to remind myself to NOT sit on the yucca

And as I pulled, and shoveled, and cursed the Bermuda, I mused on tenacity. What kind of amazing tenacity is it to fight your way first around, and then when that failed, just outright burrow and pierce THROUGH the barrier keeping you away from what you need. I found myself doing homage to the Bermuda and asking for that kind of strength and tenacity in my own life.
.

Q and A from School

I have a lovely little notebook that the school para's and I send notes back and forth every day on Dominic.  It appeals to my need to know how his day went as he cannot tell us.  About every 2 weeks I send in detailed questions, which generally  get answered via an email from our SPED teacher.   Here's an excerpt from Friday.  Good stuff.

How is peer interaction going? 

Dominic responds to hi and bye from his peers. He is also very receptive to accepting his classmates help to line up and participate during specials (gym, art, music).  He especially likes a fourth grader who also receives sped. support services. The boys have an outside sensory break together in the mornings. Dominic is still learning to share, as he is does not like to share the toys in his reinforcement bin or work space with peers.

Is he doing better in specials?
Yes, Dominic loves to paint in art and is part of a group of students at a designated table. He does need adult assistance to taking turns with the art materials. In gym Dominic enjoys running, throwing, and hula hoops. In music he actively participates in group activities  with his peers.

My response back was - Hula Hooping?  Really?

 

kind of huge...

Pre regression, Dominic loved to help in the kitchen.  He would, at age 2, drag  a chair over to the stove top and stir the pasta for his macaroni and cheese. (Annies, but still, I know).  We called them his bunnies and he LOVED them.  he lost all focus to help in the kitchen and for the last 5 years has really been mostly annoying and sometimes dangerous in the kitchen.  When I have something that needs to simmer, I do not leave it. Ever.

So, yesterday we caught a really awesome sale on apples and our local market and bought enough to can a bunch of applesauce and apple butter this weekend.  I have a doohickey thingamabob that turns cooked apples (and tomatoes) into de stemmed and peeled sauce with minimal labor.  Guess who spent close to 2 hours in the kitchen helping me (actually helping!) by cranking it and being in charge of getting the skins out of it!!!!

(in fairness, he got  kind of obsessive about it and cried when we were finished and i took it apart. But still... he stayed focused enough to actually be helpful in the kitchen for a relatively long time)

Family Pictures!

We did  a photo session with my friend Kathryn a few weeks ago and they turned out fantastic! Because I've realized that the blog's been a little light on pictures lately, here's a taste... and these don't include the really good ones that we'll send out for Holiday cards...

And on a lighter note...

Dominic likes to act along with any movie he might be watching.  A recent favorite has been Aladdin.  If you recall, the princess in Aladdin wears a veil.

I give you Veiled Boy.  Alternatively, Beavis.

PS to my earlier post

I caught this on the Facebook wall of Lisa Joyce Goes, one of the Autism Warrior Mama's I hang out with online.   She gave me permission to quote it entirely here. (Hi, LJ!)  It was appropriate to share this afternoon given the tone of the link I posted earlier.  For Background, tho I don't watch Real Housewives of NJ, apparently one of the toddlers on the show has been diagnosed with regressive Autism.  His Mom talked about it here.
 

My friend ...  tells me often that when she thinks of me she feels as though "your energy is escaping you, you need to cover yourself." Besides my extreme exhaustion, I often wondered how she could fee or sense something so intangible. Then today, after a sleepless night, I put Liam down grabbed some papers I needed to read, and turned on the tube to watch The Real Housewives of New Jersey Reunion. I have been boycotting Jacqueline Laurita since she aligned herself with Autism Speaks but I wanted to see her announce it publicly to Andy Cohen. What ensued, was horrific. She burst into tears, regressive autism. Nicholas no longer says I love you. Every ounce of anger I felt for this woman disintegrated. "Regressive autism" common, she says to Andy. Then quickly as is always the case, the narcissist in denial Theresa Judice, brings the story back to her and denigrates the moment. But, for the first time, I experienced what Karen's sensitive mind must be picking up. The energy drained from me and I wailed, uncontrollable sobs. The equivalent of how I'd behaved when Noah was diagnosed. When my friend's children were diagnosed. When I open letters from people I spoke to about this three years ago who did not heed my warnings writing to tell me their child just got diagnosed. The energy literally drainsout of me. My breathing is labored, tears that I cannot stop. Still...going...now.


Please, please please know that polio, at its HEIGHT affected 1 in 3000. Autism is stealing 1 in 88 healthy babies. Autism FOR MANY is uninvestigated vaccine induced encephalopathy. It is stealing babies from us right and left. I have every confidence Ms. Laurita is speaking to Jenny and she will be put on the right track. I have every confidence that her love for Nicholas will provoke her to become a Thinking Mom. I have to hope this. Because, as I wrote this, I would guess about 10 more babies just got their "well baby" shots and were quietly given the gift of autism. Vaccine encephalopathy. Symptoms? High fever, swelling at the injection site. Loss of speech. Regression into autism. Doctors will sell you on the fear of infectious disease. Thinking moms will help you have enough faith in yourself to read the science and realize the truth about what has been done to a generation of healthy children. While our government and medical communities stand silent. Still crying. So hard. And still, how many calls will I get before the day is out? How many new moms? Can you help me? God...if only they listened and did the work beforehand. God help us. Please.

Where is the urgency?  Where is the realization that these children who have regressive autism are the children who, when they turn 18, will have to be declared incapable of taking care of themselves like the link I posted earlier talked about. .  The gates are open and the floods are coming. 1 in 88 - and that doesn't count any children under the age of 12.  How can this not be a crisis at the top of everyones list? 

Also important, how can "redefining" autism, like the new DSM is poised to do to reduce the numbers of kids diagnosed stop the flood of 18 year olds incapable of taking care of themselves?  Surely we don't think that magically changing a label will stop the flood?

Upper Body Strength

I’m kicking myself for not taking a camera, but I didn’t, so you’re going to have to just use your imaginations.


So, backstory: years ago when Dominic was doing regular OT, his therapist told us repeatedly that his upper body strength was weak and we needed to really focus on it because it was going to be a real problem for us down the road. Other than not being able to do monkey bars at the park (when we still took him… there are no decent fenced parks in town and elopement has been a concern) we never really saw the problem.

We went to a birthday party at a trampoline gym last night for a little Alpine friend of Dominics. Actually, she’s his girlfriend. They loooooooove each other and hadn’t seen each other in almost 2 months. She ran up and gave him a hug as soon as she saw him, and I caught him smooching on her a couple of times. It was adorable. We were only able to stay for the first part of the party (it was scheduled to go until 7pm which is Dominic’s bedtime on a school night, so we left at 6), but that’s okay because that was the playing part. There were trampolines, giant foam filled pits to jump in (sensory seeker heaven) and swings and ropes and such. Dominic spent the first part of the evening jumping in and out of the foam pit while we watched. LOVED it. Then I showed him the swing. Think trapeze looking swing off a cliff into creek swing – but into the foam pit instead. Other than needing a bit of holding back to allow the previous kiddo to get out of the way, he did fabulous. He held onto the swing, and dropped at the appropriate time. And loved it. He did that for quite a while, and the he ran. Back and forth along the springy floor (they train gymnasts at this place).

And he found another foam pit in the corner that had a rope swing above it (thick rope with a big knot in the bottom). Another Alpine mom was supervising that corner of things, and the first time he got on the rope swing, she had to help him, but he clung onto it really well and then dropped into the foam. After the first time, tho, he was doing it himself and holding on instead of using it to drop down. She told me that she asked him if he needed help and he said “I got it”. Blew her away.

So between the two swings, I’m feeling like the whole upper body strength thing is fine now. Sometime soon I want to find a set of monkey bars and see if he can do them.