First of Three

No, not a post about the Borg. Although that might be cool if I did a post on the Borg sometime. 

I have lots of stuff to catch up on... once I actually post everything that's happened, you'll see why it took me so long to post it! 

Instead of creating one, long post, however, I will break it up into several smaller posts. More easily digested that way. Like chewing your food vs. gulping it down whole. 

The big news? We pulled Abby out of ABA. Finito. Kaput. Le fin. 

After a disastrous teleconference with St. Amant regarding nursery school [at which I felt like the acting in-charge-person was essentially daring me to quit the program], we quit the program. Right then and there. 

Effective when? Immediately.  

Would I like help creating an exit strategy? No thanks, I already have one. 

Would you like to have a debrief? Not really. 

Would you care to elaborate on your issues with the program so we can help other families? If you haven't ascertained what my "issues" are by now, I'm sorry I can't help you. 

So.... what now? 

We moved from having a "comprehensive" (and I use the term laughingly and sarcastically) therapy program to having a hodge-podge of services for Abby.

It's fun, actually. We get to go to playgroup. 

Heck, we get to leave the house, that in itself is a novelty and has helped my depression immensely. But I digress... 



I get to expose her a variety of novel situations and social settings. Most days she does great. Some days not so great. That's okay. 

We do home-schoolish things every day, working on different school-readiness skills. Rachael does them with us too, and is loving it. 

We get to sleep in when we need to, and take a "day off" when we're not feeling so well. 

We go to the park, and sing songs while on the swings, and play games and practice eye contact.  

We go to nursery school two afternoons a week, and she has a ECE helper with her. Yeah! 

We're seeing the occupational therapist every other week, the speech therapist every other week, and the Floortime worker once a week.  

Lots to do, lots to keep track of, and I'm the least stressed about "therapy" than I have been in a year.  

Awesome, eh? 

Welcome to our "new and improved life"! You know, where we actually have a life.  

Apparently, I'm "It"...

Q: When is telephone tag no fun?
A: When you're the only person playing it. 

Yes, they have not called me to tell me what the H*ll is going on. Well, that's not entirely true. One of several people I left messages with called me back at the end of the day (naturally), when I wasn't home (of course!), and said that I should call so-and-so tomorrow. 

A so-and-so who's already not calling me back. 

::lots of nonsensical cursing and swearing, à la Fred Flintstone::

That is all. I've pretty much had a Cr*ptacular day, and now I'm going to bed hoping tomorrow is just slightly less Cr*ptacular. 

Addendum: Okay, so I went looking on YouTube trying to find a video of Freddie-Boy doing his fake-swearing thing, and found this instead. Now that I've picked my dropped jaw off the floor, I wanted to share it with you all. ::smiles::   I watched it twice, and I'm not sure if I'm more shocked by the product placement, or the fact that the boys are hiding behind the house so they don't have to watch the girls work while they goof off. 

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::

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.  

Credit Where Credit is Due

With Autism, you often wonder just how much they're absorbing, retaining, and remembering as you go about your day. It sometimes feels like they're sooooo not paying attention, but then little things happen that make you realize you don't give them nearly enough credit.

At the local health-food store today, I was intently studying the gluten-free snacks, looking for goodies to fill Abby's treat box used for rewards during ABA. Rachael was at home with a sitter (Abby and I had been at a doctor's appointment), and Abby was milling around nearby, examining the boxes of gluten-free pasta. She wanders a little further, but I can still see her out of the corner of my eye.

Suddenly, she's gone. I peer over the display case, and can't see her. I start walking, looking down each individual aisle, and can't find her. I call her name. No response (no surprise). I glance at the door. No one has come and gone for several minutes, and the people here know us and wouldn't let Abby leave with a stranger.

Would they?

It's not that big of the store. Where the heck is she? My heart starts to pound as panic slowly starts seeping in.

And then I spot her.

She had gone, unassisted, and helped herself to a carton of her favourite brand of chocolate soy milk (which she has been crying for, but can no longer have). She then proceeded to the till,  and was waiting, patiently, for Mommy to come pay for it.

I think we got the we-must-pay-for-things-before-we-leave-the-store thing down pat. Now we have to work on the please-don't-wander-away-from-Mommy part.

Victory is Ours!

Success!!!

After many months of waiting, we will finally have a full complement of ABA staff!! Hooray!

AND....

::gasp:: you mean there's more????

Why yes, young grasshopper, there is more!

We got a call today from a speech language pathologist! Who has an opening! Who now has Abby as part of her case load!!

And that's not even the best part!

::eyes wide open:: it's not?

No, the best part is....

She comes to the house!

I don't have to shlep kiddo down to the hospital for Speech! Plus, no finding child care for Rachael!

::happy dance::

Randomings and the Epilepsy Rant

I've been meaning to post for awhile. Never seem to get around to it. So I'm taking five and catching up.

I unplugged from Facebook. It's scary. I feel adrift, but noticed that I have considerably more time on my hands.

I've gone back to piano. What does that mean, you ask? Many moons ago, I stopped my studies to get my ARCT in piano pedagogy. After many months (years) of musings, and the need to so something totally unrelated to the world of Autism and Infantile Spasms, I've decided (with my husband's blessings and support, of course) to complete my education. Cool eh? I feel very suave and sophisticated telling people that I'm now studying with a Russian-trained piano instructor at the University. :)

Speaking of Autism, very good news! They finally hired a second tutor to replace our girl that left in November! The new girl starts in two Mondays from now. We're all very excited.

Abby is doing well/not well. She's finally over her sinus/ear infection that took two rounds of antibiotics to clear up (that's the "doing well" part). She's still having seizures (the "not well" part). Several times a day. I'm feeling a certain level of frustration because they don't seem to be doing anything...

They've increased her VPA from 200 mg BID (daily total 400 mg) to 200 mg BID then 300 mg OD (daily total 700 mg). She's at almost 100% increase, but we see no improvements. I still haven't actually talked to the neurologist, just the nurse-clinicians. They've mentioned maybe having us make the trip in to see them, but won't give me a date. I asked when do we stop just increasing a single medication that doesn't seem to be doing very much, and when do we try something else. Their answer is that she still has "room to increase" based on her weight and trough levels (last at 73, should be between 50 and 100), so they'll just carry on for awhile yet.

No EEG has been done to see what's up, and no other tests have been done except the trough levels, ALT for liver functions and CBCs. I'm getting antsy. I want to know if the seizures are coming from the same place as before. Do they have the same profile? We should be outgrown the Infantile Spasms, so now what the hell is this? She's definately having complex partials, but I couldn't tell you how many. At least three a day, although I suspecct more because I can't keep my eyes on her every waking second as much as a try.

I lay in bed at night, trying to visualize a path for us. It's very blank. I feel like we're at a dead end, and uncharted waters. I realize now that we will probably always have seasons in her life where we will be struggling with this disorder, but it's been a long time since I've really understood what that means.

I read a great post last night. It's a blog I've followed for a long, long time, another child affected by IS. She talks about IS being a symptom, not the disease. I had thoughts like that before, but was never able to articulate it. I envy her, because for all of their struggles, they finally had an answer. We've never gotten answers, and because Abby did so well for 19 months, we weren't overly concerned about that. We had hoped that part of our life was over with. But now, suddenly, the need for answers is very real and very urgent to me.

Bah, enough already. Onward with my day to be productive! Or at least a reasonable facsimilie thereof.

The Waiting Game

I don't often complain about waiting lists.

In Canada, with socialized medicine, we often have waiting lists. You wait to see your doctor. You wait for a specialist. You wait for your tests. Heavens, sometimes you wait weeks or months to start chemo or radiation treatments.

We've experienced very little waiting. Generally, what Abby needs she gets in very short order. I guess that's one of the benefits of having an acutely ill child so early in life.

But now, really for the first time in Abby's life, we're playing the waiting game.

Two important transitions happened this week. Yesterday was one of Abby's ABA tutors last day. We were heartbroken that she was leaving (Honey, if you're reading this, don't feel bad... we understand. Really. We knew it wasn't forever.), as Abby loves her "girls". I would smile when I heard them playing a favorite game of "touch the ceiling", or when they sang funny and familiar songs together. Therapy time was very much fun time.

We had several weeks warning that she was leaving, but it still feels like that in the blink of an eye, she was gone.

So we wait. For a replacement. Which none suitable has yet been located. Abby still has her other "girl" in the mornings, another young woman who she (and we!) love dearly. But it's just not the same.

And now, we also discover this week that our time with the speech language pathologist has been cut short. We knew our time was ending soon, as her belly grew rounder and bigger and her due date drew near. But she's had problems with the pregnancy, and she's been told to quit working. Now.

So in the blink of an eye, literally, she was gone.

So we wait. For a replacement. Which none suitable has yet been located. Abby is at the top of the priority list for the next opening with a SLP, but we might be waiting awhile. As in, we might be waiting a year until our regular SLP is back from maternity leave.

I have, in my past, struggled with things like anxiety. As most people who have had to deal with that monster-in-the-shadows will tell you, the hardest thing to deal with is the anticipation. The not knowing. Simply, the waiting is what gets to you.

::drums fingers on desk, waiting::

Aw Man, Now I Got To Think Of A Title Too?

Well, hello there! It's been awhile.

Lots has happened. We sold our house. We're almost done buying another one. I have 30 days until we move, and I've packed one, lonely box.

Rachael started walking. Sort of.

Rachael turned one!

Abby has unleashed her inner Picasso (man, can that kid pump out the art!), and has discovered stickers.

We're losing an ABA tutor effective November 6 (which the tutor herself informed me of a good 10 days ago. St. Amant has yet to phone me and tell me I'm losing a tutor. I'm a little annoyed at them).

We're totally on the gluten-free bandwagon now. Abby and I are both feeling a lot better.

We have four more sessions with the speech language pathologist before she goes on maternity leave. They still haven't hired a replacement.

Mmmm.... let's see.... what else?

How about some pictures?










I guess that's it. With so much going on, I currently don't have time to be thoughtful or to ruminate on my innermost thoughts. Which is probably a good thing.

(Okay, so I'm lying a little bit there. Much of my thoughts as of late has been occupied by a little boy named Trevor a.k.a. seizure boy [is he still seizure boy if he stops having seizures?]. He was also affected by Infantile Spasms, and recently had more or less half his brain removed in an attempt to stop the hundreds of daily seizures he was having. You should go read move about him by clicking here.

I didn't really want to mention it because it's made me dark and moody and made me think a lot about IS, which is something I've thought very little of the past while. It's a deep, dark place where I'm still mad at God and I don't enjoy visiting. It's a place where you question your faith.

So then why the hell am I talking about it, you ask. Good question. I don't know. )

The Whole Beef Enchilada

Who knew security comes at the price of a freezer full of meat?

Our beef order came yesterday! My nose and tongue were again happy as I browned some ground beef to make Crockpot Pasta Fagioli Soup for supper. After ordering this organic beef last fall and eating it through the winter, it was a rude awakening in March when we ran out and I had to buy yucky conventionally-produced beef. Needless to say, I ordered more this year. About twice as much. Hopefully we'll make it to next August this time.

I'm also anxiously waiting for my chickens to arrive, from the same people I get my CSA basket from. And I've been dutifully blanching, freezing and canning the summer bounty to eat later in the winter.

Now, let's be clear. I have never been hungry a day in my life; there was always food on the table. Good food, now that I think about it. But there's still security in knowing I have food to see my family through for weeks, months, an entire season even, on hand. Maybe that's part of human nature, the need to save during the feast for times of famine. Until very recently, our survival depended on it.

But there's also something liberating about it. It's like using cloth diapers: I am not dependant on running to the grocery store when something runs out. In the case of diapers, I just run a load of laundry. For food, there's always something to eat in the house. I might be beans that require soaking and cooking, mixed with whatever else I find on hand, but we will always eat.

I have felt that need for self-sufficiency for a long time, but it has recently been intensified by the book Animal, Vegetable, Miracle by Barbara Kingsolver. I have to thank Not Jenny for lending it to me. Michael and I have oft thought about our dream of a home in the country, with big gardens for me to putter around in, much like the gardens my grandparents had growing up. As a child, I didn't realize other families actually bought their vegetables; I naturallly assumed everyone's grandparents had a giant bin of potatoes in the cold storage, and a fridge full of carrots you could just help yourself to. Didn't everyone have a freezer just for frozen peas, corn and beans? And those little trays of "flying saucers" cooked in tomato sauce? I think I was well into my teens before I ate a store-bought jar of jam.

I think of how rich we were then. Not necessarily in money, but in food and memories and security. That aspect of growing up is one of the most intense in my memory, and it's something I strongly desire for my children. We worried if moving out to an acreage/farm would be difficult for Abby. We spent a weekend at my uncle's place out in the country for a family reunion: he has about 100 acres, a good 2 acres or so of yard. Abby was perfectly content to just be outside, without fences and boundries (I actually had to fight with her to come for meals). Our largest obstacle right now (other than money) is the desire to be in the city for ABA and other preschool services.

We'll just keep praying about it. :)

Revelation

I figured it out.

Not that average three-year-olds aren't exhausting in their own right, but a three-year-old with Autism AND Epilepsy has just plain old... [insert your own word to describe just how tired I am. I'm too tired to get a thesaurus to look one up].

I figured it out while I was making beds. I do some of my best thinking while making beds. It's the constant vigilance that makes you feel like you've gone off the deep end.

You don't ever, ever let your guard down, or you end up with things like the poopy potty incident (which I care not to discuss), or children being crushed by dressers, or you're stuck figuring out why the in-out mechanism on your DVD player doesn't work.

You can't leave her alone in her bedroom because she stands on the one inch wide headboard to look out the second-story window, and she needs reminding every 15 seconds to get down. You can't unload a dishwasher without her opencloseopencloseopencloseopenclosing the darn thing (or a cupboard, or the fridge, or a closet for that matter). You cannot for an instant let her out of the confines of the fenced back yard lest she run out into the street, heading for the park, and may or may not obey the command to stop. You can't just let her play at the park, watching from a distance, because she'll grab the cute little 2-year-old girl by the scruff of the neck and try to hurt her.

By the end of the day, you're exhausted. So much effort goes into what ABA refers to as "shaping" her behaviour, prompting her for appropriate responses and modeling them. And prompting. And modeling. And reminding.

Before you know it, it's 8 p.m. and you've just reminded her for the 25th time that day to stop banging her head on the plate glass window in the living room (and try redirecting her somewhere else without resorting to Raffi, again), your house is a mess because you can't keep up with both her and the toys/dishes/laundry/animal hair through the day, and the baby accidently took a nap at 7 p.m. when you weren't paying attention so now she's up until 11 o'clock, easy.

But then you finally get down time, of some sort, where you're not hovering over that blonde, curly-headed mop trying to "shape" appropriate behaviour and generally try to keep her from hurting herself, others and your property.

The vigilence has seen us through another day.

You finally crash at about midnight, with two loads of laundry still unfolded but at least the dishes got done, and you get a good, solid two hours until Abby starts screaming in a night terror and takes over an hour to come down and settle back to sleep, just in time for the baby demanding to be fed.

So the vigilence, then, really doesn't get to sleep either, now does it?

There's constant medications/supplements (at last count, we use eight medication syrings a day, plus one pill), two-hour waits at the doctor's office with your phobic child for a two minute appointment for a medication refill because he won't write a script for more than a couple months at a time. There's the constant reordering of medication because the compounding only has a two-week shelf life (and the dose is not available in pill form).

Does it sound like I'm complaining? I guess I probably am. But hey, it's my blog, and I'll whine if I want to.

I guess what I'm trying to say is that it's that constant vigilence, the never being able to let down your guard, that I find so trying. I am thankful everyday to God in Heaven that I'm not needing to keep vigil over the seizures, and the vigilence required for the medication regime is an acceptable price for that.

But the behaviours that never seem to change. The having to repeat, repeat, repeat, and feel like I'm getting no where with my child. It's depressing. It's discouraging. It's exhausting.

It would be nice to let my guard down a little bit.

Cheering Section

We love cheering in this house.

We need to be careful, however. Too enthusiastic of a cheer and it scares Abby and she starts to cry. :O Too little, and it loses it's effect.

Some little things to cheer about:

I was packing for us to come home from Capital City the other day. Abby came up to me, looked me square in the eye, and asked: "Car?".

I smiled. "Yes honey," I replied. "We will be going for a car ride."

"Car?" she asked again.

"Soon," I said. "I need to finish packing, then we're going to go for a car ride home."

" 'K," was the reply as she runs off to play.

A couple of days later, and I hear Abby and her tutor playing in the next room. I can tell from the interaction that they are putting pieces into the "Elmo and Abby" book.










Image courtesy of http://www.softplayforkids.com/ProductInfo.aspx?productid=2406




"No, no," says the tutor. "Broccoli doesn't go there. The backpack goes there."

There is a short pause, and the tutor begins to laugh. "Oh Abby," she says, "you're so smart!"

Turns out she was trying to cram a piece of toy broccoli into the space where the backpack piece fits because there was a picture of a piece of broccoli in Cookie Monster's backpack!

Yeah! 2D to 3D matching, and we're not even at that program yet! She's such a smart cookie. :D

Empowerment

I've been neglectful again. Sorry mom.

Life has been interesting. There's been much to think about, much to consider. More things to do than hours in the day!

1. We thought about moving. We actually looked at a couple of open houses. The thought of significantly increasing our mortgage literally made me physically ill. We're staying put for now, and we'll just have to have "less stuff" so we'll fit into our current space better. .

2. We took a long, hard look at our finances and our priorities. I've been thinking a lot about food banks, not because we need one, but because so many people do. Poverty really is a blight in our society. I've vowed to give more to the poor on a regular basis.

3. I'm trying to figure out how to intergrate the ideas of voluntary simplicity into our lives. I'll get back to you on that one.

4. I've actually gone 15 whole days without using my clothesdryer. But I'm running out of towels, and my family complains if those get dried on the clothesline...

5. I've been an active member trying to get a local food cooperative off the ground, and it's finally starting to come to fruition. It's exciting to be part of a project like this at the ground level.

6. Abby has learned a number of new words, and is doing wonderfully. We're starting to realize how much she's actually observing and understanding in her environment. Like when you wake up in the morning, and it's quarter to four, and your hear a knock at your door (and she actually starts knocking)...

7. My garden is in. I actually have two plots, one in my yard, and I snagged a vacant community garden plot at the last minute. Now we pray for rain.

So why is this post called "Empowerment"? Because all of these items are empowering on one level or another. They're something that makes me feel good about who I am, where I fit into this community, this world and this life. It's the realization that we make an impact. The knowledge that my child is improving and growing and learning and that we've made the right decision putting her in ABA. Knowing we can do things to help the environment. Seeing the potential of our own situation.

And now, as my brain slowly turns to mush, I'm going to bed. :)

Developmentally Appropriate

After last entry's wallow in self-pity, I wanted to focus on something positive. :)

We had our first fight over a toy last night. I was overjoyed! Why? It was normal. It was a glorious, normal sibling behaviour! Success came as a screaming, hair-pulling, push and shove rumble over the toy piano.

I'm amazed at how far Abby has come in recent months. When we started ABA in November 2008, she often tantrumed, didn't point, hardly vocalized, didn't really wave hi or bye, didn't know how to colour a picture or paint, and rarely made eye contact. Now, thanks to the hard work from her "team", there are rarely tantrums, she points and asks, "up" (OMG!), waves hi and bye with gusto (and even makes eye contact while doing it!), loves colouring and painting, and trying soooo very hard to speak (she actually says 6 words)!

And now, to do something as socially aware and as developmentally appropriate as fight with her sister over a toy... let me tell you, my heart is aflutter with joy. I'm even really excited that I've bought her puzzles rated for ages 3+... I can't remember the last time I bought her a toy that's actually for her age group (instead of for infants).

Now, someone please remind me of this moment in six months when I'm complaining about how they're always fighting over toys....

Pie and Pie Charts... and Introducing Floyd

I'm sorting out my seeds. Am I allowed to start my tomato plants yet? Not until April? At least I can start the begonias in March sometime.

I'm itching to get working in the garden this year. Yes, I will actually have a garden, so I have been promised. The sod-busting started last spring, but never got past the strip alongside the south wall of the house. It's a long, tedious task that should have been completed in the fall so the grass got a chance to rot, except I was either conveniently 12 months pregnant or taking care of a teeny, tiny newborn.

*sigh*

I wish I could have gotten the garden dug last year, I wanted to plant rubarb. Mmmm... strawberry rubarb pie....

I've finally got a few moments to myself for the first time in days (both girls are sleeping), and it's spooky how quiet my house is. Except for the pops, cracks, mysterious thumps (that's Floyd, who seems to have moved from my parents furnace to ours), the clopping of the clothes in the dryer in the basement, the soft signs of a sleeping baby on the monitor... I guess quiet is a relative thing.

We had our "intake report meeting" yesterday for Abby's ABA therapy. It was interesting; it helped quantify just how behind she really is. It's disheartening on one level, seeing in pretty graphs and pie charts, "yes, your child is different". But on one level, it was strangely satisfying and reassuring. I'm not crazy. There really is something different about my child. I have a pie chart to prove it.