The ABA Saga

Ready for the ABA story? No? Too bad. You're going to hear it anyway. I have a serious need to rant. It's my blog and I'll rant if I want to. :P

Remember back in November when when we lost a tutor? And then Abby started having seizures again? And after that, we got two new tutors, only to have Abby come down with her mystery illness? 

When the dust finally settled, and we tried to get back into the routine, Abby was unimpressed. I haven't talked about it on the blog because I didn't think I could without publicly trashing the program. 

I am now going to publicly trash the program. But just a little. 

After such a long interval without regular ABA, we thrust her back into the program full-tilt expecting her to basically pick up where she left off. 

Wrong-O. 

Let me preface this by saying there are serious organizational deficiencies in the ABA program. Several. Many. I could go on for pages about the problems we've had, from staffing changes without prior notification (I sometimes get schedules in the mail with new, random people on it), to serious security/privacy breeches, and.... oh, I'll stop there before I get too riled up.  

Abby was unhappy with her "new" tutors. She screamed. She fought. Eventually, she just shut down. They would show up at the house, and her eyes would just glaze over and she'd leave for Paris or something. She would be unresponsive. Her frustration and unhappiness spilled over into downtime. 

It was disheartening, and I have been on the verge of withdrawing her from the program countless times. (I would go to bed ranting, "That's it! We're done! I'm calling them tomorrow and telling them where to stick it!", only to wake up in the morning and try it one more day.) I would literally cuddle with her at night and cry because I felt so bad about her unhappiness. 

After numerous lengthy discussions with our consultant (who is trying her hardest, bless her soul) and the family coordinator (who has since quit, hope it wasn't anything I said!), we changed strategies. I still feel that the tutors we had were not a good fit for our family, which is ironic because they rejected numerous candidates for positions in the FOUR MONTHS!!! it took them to find the staff. But I was willing to try changing strategies to "enhance the reinforcement value of the tutors to encourage participation". 

Whatever. 

I told them that I would make a decision about staying in the program during summer shut-down (the last two week in July leading up to the long-weekend in August), which has long since past. I am still on the fence. Things are going better, but they're not doing any actual work. They're still "enhancing the reinforcement value of the tutors" by playing with her six hours a day for the past month or so.

Whatever. 

But things were starting to work out. Abby was happier. I thought maybe it was a sign that I should keep Abby in the program. I randomly took out a book about Autism from the library, and it said that ABA was about learning to learn. I would live with that. I wanted Abby to learn to learn.  

So when a phone call came last week telling me that our morning tutor was quitting and Friday 20 August would be her last day, I was taken a little aback. "Geez God," I said to Him, "Don't send me any mixed signals or anything". But I realized that maybe this was an opportunity. 

One of my issues with our current tutors is Nursery School. I had elected to send Abby to Nursery School two mornings a week to help with her socialization (because I'm not entirely convinced spending 6+ hours a day with an adult tutor in my house is going to help her learn to interact with her peers), and a tutor goes with her. 

Normally in the jurisdiction where I live, I can apply to the Daycare office to get funding for the school to hire an extra ECE (Early Childhood Educator) to help Abby in the integrated classroom setting. However, the "service delivery model" for ABA is that an ABA tutor goes with the child and is their helper during school hours. 

In theory, it's a great idea. I mean, she gets a helper either way, right?

Right?

Wrong. 

There's a big, big, BIG difference between an ABA tutor who has education in the ABA way of thinking vs. an experienced, specially-trained ECE. Did I mention there's a BIG difference?  I found that the tutors were lacking the prerequisite skills to successfully help Abby navigate the classroom. The feedback I got from the school director deepened my concerns. The director and I hatched a plan at the end of the school year in June to get an ECE in place for Abby for the fall. 

Okay, I wrote that and realized that it sounded like we had this diabolical scheme or something. It's nothing like that. We just wanted to do everything in our power to get the appropriate staff in place for Abby for September. Just so we're clear on that point, okay? 

Anyway, with one tutor quitting, I saw the opportunity. Maybe God is listening after all. I proposed to the program that we shuffle the schedules around so that I had a part-time tutor in the morning only, and I could send Abby to school two afternoons a week, which coincided with when the ECE was available. I told the ABA program that I wasn't holding my breath that a replacement tutor would be hired in the near future seeing how the last one took four months, and I wanted to fill in the gaps the best I could with what was available to me (those were my exact words, BTW). 

I had already asked the Daycare office about funding, and was told that the ABA program had to basically give their blessings to my plan before they would consider my request for funding (to prevent double-dipping from the provincial pot, I understand and I'm okay with it). 

I spent several days last week trying to wring an answer from ABA. Finally on Friday afternoon the big mucky-muck calls and tells me that they will consider my proposal and get back to me on Tuesday after the Big Meeting (which is today as I write this) to let me know.  

Yesterday (Monday, the day before the Big Meeting) at the end of the day (because important business should only be conducted at the end of the day where no one else is left in the office), they call me to advise me that they are sending a tutor from one of the other homes in our area to my house tomorrow (which is today) for some training. 

Oh?

Her house is going to Kindergarten next month, so they're transitioning over to the School-Aged program. So they're sending her to my house. 

Oh? 

And an important detail regarding said tutor-from-the-other-house popped into my head. She's six months pregnant. Which means she'll be gone on her maternity leave for a year in, say, three months?

Damn.  

Funny the big mucky-muck didn't mention anything about this Friday afternoon when I talked to her. 

Hmm....  

Feeling like there was something more afoot, I told the poor girl in Scheduling that I would not authorize any additional staff in my home until someone called me and explained what was happening. In detail. Thank-you. 

She harrumphed and said she would see what she could do.  

Guess what? Something more was afoot. 

This morning, bright and early, I get a call from a middle-level mucky-muck (I guess that would just make her a mucky. Or would that be a muck?) apologizing for the lack of communication. I probably would have felt more gracious about it if it was the first time, not the fourth time, there's been a "lack of communication" regarding staff changes. 

But don't worry, I was polite. Barely.  

Apparently when they notified me about the morning tutor leaving, they failed to also notify me that the afternoon tutor has also tendered her resignation. Whose last day, incidently, is also this upcoming Friday. 

::head desk::

  
  
I agreed to the pregnant tutor coming on board as a stop-gap solution to the having absolutely no staff as of Monday problem.  

I wish I had an ending to this post. Right now, it's almost 3:15, and I have yet to hear the results of the Big Meeting from this morning. I need to make a decision this week. Go or stay? Stay or go? The idea of life after ABA is a little scary. We've been in the program for almost two years, roughly half of Abby's short life.

In part, my reluctance to leave the program is due to my own inadequacies. I have a track record of leaving things undone. Starting projects and never finishing. Ask my mother. 

In recent months, I have asked myself: "Why do I want to leave the ABA program? Am I going to let Abby cut and run every time things get tough? Am I giving up or moving on?".

In other words, I'm worried that if I give up too easily, I risk transferring my own pattern of unfinished business to my children. But maybe we've stuck around way too long because of my own fears about having yet another unfinished business. 

::long, mournful sigh::

And yet, with yet another staff change, while it will cause stress, it may turn things around for us. It might just be the change we're looking for.  

::another long, mournful sigh::

The Variance of Circumstance

Yep, I'm still talking about our trip. You can read more about it here. 

Okay, so I'm talking less about the trip per se, and more about where we stayed. We stayed in a campground. It was interesting. I highly recommend it to anyone who's doing some traveling: not only is it relatively inexpensive compared to a hotel, it's also more infinitely more interesting. 

You see, in a hotel, you are in your little room. Alone. You don't necessarily encounter other people who are staying there as well. A campground is different. We were there for five nights. Some people were just passing through and stayed one night. Others have been there much, much longer. 

We discovered after the first day or so that a significant portion of the people at the campground were actually living there. Because you move about the campground going about your routine such as laundry, washing dishes, using the bathrooms and showers, etc, you see a lot of them.

Most people who are living there are temporary workers from other parts of the country; for example, one woman I talked to was from Edmonton. She followed her husband there. She told me every time she saw my kids she felt homesick, missing her grandbabies who were about the same age. 

We had Steven King staying in a decrepit camper across the road from us. I swear, it was Steven King. Okay, not Steven King as much as it was Stuart Redman, a character from his 1970's novel, The Stand. Minus the dog. And none of that Captain Trips stuff. (If you understood all those references, does that mean you're a geek too? The first Steven King novel I ever read was "The Stand". I bought it at Value Village for $2 when I was with my friend Kelly. The book smelled like cigarette smoke. I was twelve years old.)

Okay, okay, the point... 

I found myself humming one of my favourite Carolyn Arends songs, Travelers (The Airport Song).  The song is about... well, traveling. And waiting in airports. Which doesn't necessarily have anything to do with a campground in Regina. But there's a line: 

"There is variance in circumstance 
Direction and occasion
But the truth is we're all travelers
Who have not reached our final destination"
 

that sticks with me. 

In that campground, there was that variance. Some were there for happy reasons, like us. Some where there strictly for work, like the Edmonton lady. Others, like the family next door, appeared to be living there for other, less joyous reasons. The husband came and went each day in his work uniform, and probably wasn't a migrating worker like the Edmonton people. The wife often cried in the bathroom at night. The two kids were rarely seen, and smiled even more rarely. 

In our life, and in our faith, we all have that variance in circumstance, direction and occasion. Again in Ms. Arends' words: "There are signs to welcome daddies, There are flowers and balloons, Business trips and funerals, And happy honeymoons."
  

I suppose that lesson has never been more vivid in my life. How we can all collectively be in the same physical space, and yet none of us are in the same place.


Our faith, which for all intents and purposes is a never-ending journey, tends to make us occupy the same physical space while rarely being in the same place. It happens every Sunday. Each of us there are at different points in our journey home.

And some are stuck at the airport. Others are in mid-flight, but have terrible turbulence. A few are flying smoothly over a clear, jet-blue ocean. 

It makes me question where I am on my own journey. And who's flying the plane. 

Anyone Missing a Garden Gnome?

I love it when news stories make me laugh out loud. 

(the comments are almost as funny as the news piece itself!)

The Queen City

The best part of your vacation is the coming home part. - My Dad

Canola field near Broadview, Saskatchewan, with storm clouds in the distance

Our trip was, to put it mildly, an astounding success. I kid you not. 

We spent a luxurious five nights in our camper at a campground just outside the city limits of the beautiful city of Regina, Saskatchewan, AKA the Queen City (In case you were wondering, the word regina is latin for queen). Yes, we went to Saskatchewan for our holidays. 

Quit laughing. We like it there. We went to Moose Jaw for our Honeymoon. 

Really, you can stop laughing now. I happen to like Saskatchewan. 

Okay, those of you who don't live in Canada may be confused at this point. Saskatchewan is often the brunt of jokes. It can be very, very flat and treeless at times (although that's really a relatively small part of the province. It's unfortunately the part you see if you're driving through on the Trans-Canada on your way to someplace better). It's epitomized by the lyrics to the popular Canadian sitcom, Corner Gas (which just happens to be about Saskatchewan)... "You can tell me that your dog ran away, then you tell me that it takes three days...".

Saskatchewan... hard to spell, easy to draw...

The kids did very well. Abby exceeded our expectations. She ate and slept well. She used public restrooms (we had lots of issues with that until very recently). She tried new things, and was generally a very happy kid. She was very ready to come home by the time we left. LOL. 

Regina is a beautiful city. It's hard to believe that it is, in a sense, totally artificial, with all the trees and such. 

Confused? 

Where Regina was built is a semi-arid, treeless, flat... expanse. It's almost a desert. There was nothing there 150 years ago except a trickle of a creek that has since been dammed and built up into the beautiful Wascana Lake and adjoining park. Every tree is planted. Every hill is sculpted. Every blade of grass is meticulously watered to keep it from dying. 

It's natural beauty is entirely man-made. Cool, eh?   
 

Here are the highlights of our trip: 

Our chalet

Our camper. We bought it earlier this year from the parents of a good friend of mine. While not huge, we thought it was quite spacious and luxurious compared to tenting. Then we saw some of the RV's and 5th Wheels at the campground. I'm pretty sure some of them had more square footage (and a bigger bathroom) than the little house Michael was living in when we met all those years ago. 

The whole camper thing worked out well.  Not only is it a fraction of what a hotel costs (we basically camped five nights for the cost of one night in a nice hotel), you also get to bring your kitchen with you. Makes the GFCF thing infinitely easier. 

Legislative building

The Legislative grounds. My brain still thinks of it as the Palais legislatif from my days in French Immersion/Francophone University. Besides I think the French sounds for sophisticated. It was quite lovely. We didn't go inside but enjoyed the grounds instead. It's on the shores of Wascana Lake. 

That's a statue of Her Majesty Queen Elizabeth II on her favourite horse. The statue was erected for the horse's birthday or something. I didn't get to read the plaque very well... it has the words favourite, horse, birthday and statue on it. I had to piece the rest together myself.  *shrugs* Nice statue though. 
  

The kids. Just because they're so gosh darn cute. :)

The lake is really very lovely. It was started in the 1800's, and was drained and islands were created using only hand labour in the 1930's as a  make-work project. The lake was drained again recently (2003 I think) for what they dubbed "the Big Dig", where they deepened the lake and created another island or two (they used machines this time). All in all, a piece of paradise in the middle of the city. 

Isn't that an awesome picture?

It was challenging taking pictures this trip. Abby loves having her picture taken. Rachael hated it, and I often had to ambush her. Weird. 

Anyway, we stopped and ate a snack in a picnic area. 

Eating

  

Abby stuffing an entire piece of... something... in her mouth. 

   

Come on Mom, I'm done, let's go.  

Let's gooooo.... we're boooooored....

  

Rachael patrolling the bathroom perimeter while Daddy and Abby used the potty. 

 

 

Totem pole. Obviously. 

There was this awesome totem pole there. Why there was a West-Coast totem pole in the middle of Saskatchewan I'm not sure. The plaque said something about a gift. Maybe it was for the Queen's horse's birthday? (As you see, I wasn't real big about reading the plaques this time out.)

Daddy and his girls

Same shot, except with Mommy. 

 

Relaxing on the wormy-thing, enjoying the ride

On the other side of the lake, they had this great playground that we actually visited several times. They had this giant wormy thing that bounced. It's hard to explain. The kids liked it. 

Michael riding the big wormy thing

They also had spinny things. Abby discovered she likes to spin, or rather, be spun. There was the big, slow one: 

Brave Daddy with the girls on the big spinner

 

 

 

But then there was a smaller, faster spinner. 

Abby going for a ride

Abby LOVED the blue spinner. We encountered several other playgrounds in Regina that had something similar, and she's want to spin on the them until she was literally green. We felt ill just watching her. We were never too sure if the look on her face was joy or terror, but every time we stopped the spinner and asked if she wanted more, she would enthusiastically sign, "more". 

 

Walking back to the van

We spent a lot of time exploring the city and finding playgrounds to entertain the kids. One had a big hill, which even though where we live is relatively hilly, there's few actual hills to play on. 

Rachael on her hill-climbing expedition

Crawling down the hill is fun!

Daddy after the rolling-down-the-hill demonstration

One place we stopped also had a big puddle, and a big map of Canada painted on the black-top!

Who needs rubber boots?

Rachael doing her Godzilla thing on Newfoundland and Laborador

We also visited Government House, the home of the lieutenant governor. It was very pretty, with beautiful landscaping and nice flowers. The interior is a museum (and offices, but that part's not open to the public) and they have an "educational playroom" in the basement. 

The kids were less than impressed. It was our last day there. Their favourite part of Government House was the elevator ride. 

Cue elevator music

But I did take a picture of the plaque, fulling intending to read it later... 

We also attended Mass at the Holy Rosary Cathedral. It was very tall. 

I didn't take any pictures of the interior because, well, frankly it wasn't very interesting. It was obviously renovated sometime in the 1970's or 1980's in the "Spirit of Vatican II", not that there's anything wrong with that. There just was this terrible discordance between the gorgeous neo-classical, gothic-esque exterior and the bland, biege and boring interior. *sigh* Perhaps I've been spoiled since our local parish (of approximately the same vintage and architecture) has had a serious restoration in recent years. 

Well, that's the big highlights that I have pictures for. Of course, we did tons more, and I will discuss them in another post. For now, supper is waiting and a cranky toddler needs her Mommy. 

Thanks for reading this super long post!

Vacation

Hi! Sorry it's been forever... life has been busy. As I'm writing this, we're sitting in our camper in lovely Regina, Saskatchewan on a little holiday!

In our furthest sojourn from home, our kids are doing great and adapting well to new and novel situations. So don't worry, we're taking pictures and will share our journey with you all when we get home!

Four Things

Okay, so here's the "other stuff". 

1. We got Abby's allergy testing back. In addition to her pork, blueberry, sesame and sweet potato allergies, and in addition to her casein (for sure) and gluten (suspected, although we're still in the "trial" phase) intolerances, we have discovered that she's also allergic to soy and eggs. That has seriously narrowed our food choices... yet again.  

All the poor kid wants is a glass of chocolate soy milk, real toast with butter and McDonald's french fries. All of which are off limits.  

2. We tried the Neti Pot. She was okay with it for about the first ten seconds until she caught on to what I was doing. Then she wasn't so okay with it. 

It seems to have helped, however. We'll keep at 'er for a few days, twice a day, and see what happens. 

3.  I forgot to give her her afternoon dose of anti-seizure meds yesterday. Ooops. She seemed to be fine, however. Actually, better than fine. She was feeling happy and smiling in the evening. Connection? 

Michael and I have discussed cutting back on her meds. We're undecided what to do. We don't think it was the meds that mysteriously made her stop having seizures back in April and we're wondering how much the meds are affecting her physically and mentally. 

I guess what I would really like is to talk to the neurologist about it, and not her lacky-nurse-clinicians who automatically say "no" to everything I propose. *snorts* Good luck getting Dr. B on the phone, however. And Dr. E, the pediatrician is away on holidays. 

4. Canning season has begun!  I procured a mess of rhubarb from the first outdoor Farmer's Market of the season, and proceeded to can rhubarb marmalade and rhubarb syrup. 

The marmalade was ridiculously easy and insanely delicious. We've already eaten a jar. The syrup is delicious mixed with soda water or carbonated spring water for a refreshing "home made", old-fashioned soda. Kinda sweet and kinda tart. Or add a bit to your iced tea! 

Okay, I lied. There's five things. 

5. Still undecided as to the fate of ABA. Abby is obviously unhappy, and the tutors are frustrated. The consultant, bless her soul, is trying her best to resolve this, but deep down I have suspicions that it may be unresolvable at this point. We've got three weeks until my self-appointed deadline to stay in or get out of the program. 

There's a lot more to this story, and I will post it down the road when I know how the story ends.