A Photo a Day: Lucky 13

This is my daughter walking unassisted at physical therapy.

I love it.

OK so while I of course love that she is WALKING! WALKING UNASSISTED! I also love this shot. The background is a little blurry, you can see the motion in her body, but her torso is perfectly in focus. If I were faster, I'd have set the focus point a little differently, maybe. And yet....this is, to me, exactly what I was trying to capture.

A few short updates - October 11, 2013

• The grocery experiment is one week old and going well so far. I did a single big trip last Friday to YDFM and didn't spend a lot and got mostly fresh food and ingredients. (No coupons!) Today, a full week later, we still don't need to do another big trip. On Sunday I went to Publix to pick up some freebies, my husband went to a store for eggs, and yesterday I ran out to get milk (cow and almond). I baked - banana muffins, pumpkin muffins, pumpkin pancakes, apple cider donuts - and then froze things and we have been enjoying them all week. I also premade steel cut oatmeal (I make four servings at a time). It's working so far, and it's really important. I also set up some other strict budgets and made some plans and I am hopeful that this will help us out over the next few months.
• I had another IEP update meeting with the special education teacher, the general education teacher, and the speech therapist. I walked in worried about what I'd hear and walked out very comfortable and reassured. Again the speech therapist added more time - I actually argued against it for various reasons but in the end we're working it out. The kid is getting more pull-out time, but she still will be in her inclusive classroom a great deal. I don't love this, I have to admit - I want her to be in an inclusive classroom 100% of the time. But there are 25 kids, neurotypical and not, and there has been some staff changeover (we're on the fifth parapro thanks to people giving notice, taking other jobs, and so on, and there's a new person starting Monday). I know that pulling her out will give her more consistency and focus and allow her to learn her academic stuff. ACADEMIC STUFF in kindergarten - this still bugs me greatly as well but it's how things are. And she IS doing well with it (reading! math! Spanish! science!), so giving her a chance to keep up with her peers is important. The IEP is going to be tweaked and updated and I suggested that we revisit it after Thanksgiving.
• AAC-wise, the kid has started pushing her talker away or turning it off. And she's also speaking in complete sentences that are mostly intelligible, so I get it. We're working on finding a balance - sometimes she does need the talker to express complicated thoughts or to be more readily understood. But our goal and the prognosis for her has always been that she'll be completely verbal, so I get it. (Also she can read and she has been reading for some time and I credit the talker with helping her literacy.)
• Four weeks until I turn 40!

Kindergarten Update! - August 28, 2013

As some families are slowly starting to realize summer is ending, our school year is now in full swing and we're nearly through the first six weeks! We actually have our first weeklong break just around the corner.

Things have been interesting as the school finds its footing with my kid and she with the school. There have been multiple staff changes - nobody's fault, but one person apparently gave notice early on in the year and there was a scramble to replace her. So my kid has had three different parapros helping her - and while she's a very resilient girl, it still has been a bit disruptive to her and to her classmates (the parapros are supporting the entire class, but my kid has been getting extra help when they go from room to room). The first was lovely but a bit hovery. The second tried really hard but I think she was in over her head.

Now we have someone in place who seems great - she's been in the school since day one and has been assigned to spend more time with my kid. I really hope that the consistency going forward will bring some sort of calmness. So far, my kid has been pushing boundaries and pushing buttons, acting out and bringing back some of her old behaviors, but this parapro has handled it calmly and with understanding. Here's hoping.

Standardized testing has begun - in fact, as of this writing, I think she might already be done. Yes. Standardized testing in kindergarten. It's just to find a baseline for her, and she will retake the test twice more to ensure that progress is being made. All of the kids in the entire school system do this. And while I see the data as being very useful, I still wish it could be collected in a more organic way. But I am not stressing too much over it - she will do whatever she does and get whatever scores and we'll use those numbers as a starting point. I know she can read - she even willingly demonstrated her letter recognition to her teacher during an assessment, so that's good. I know she absorbs everything around her. So...standardized testing? Eh. We do what we have to do. They did set her up for success, allowing her to use her talker and a touch screen during the testing. But if she has low scores, it's up to the teachers and staff to bring them up next time, right?

And we've already had one awesome IEP update - in a meeting with the special education teacher and the speech therapist, the SLP announced that my kid needed more speech therapy and added more time to her IEP right then and there. Yes, you're hearing me right - I didn't say anything, I didn't have to fight or argue, I just sat there and thanked the therapist. Also I really liked the therapist's approach - in part, she noted how even if my kid can't make certain sounds in the middle of words (yet), she needs to know she should for literacy purposes. She needs to know that there's a "p" sound in the middle of "apple," for example, because the letter "P" is there. It was a great look at speech in context. I loved it.


So the first six weeks have been bumpy but not terrible. And what do I hear over and over? "She's so sweet, so smart, so lovely." She has friends who love her. The teachers do seem to get her. The inclusion teacher still needs to figure out what inclusion means to her, and I feel like she needs to stop saying "This is new to me" over and over - yes, it's new, it's new to all of us (which is how I respond). But she has a lot of love and I'm trying to stay positive.

So that's our first update. It will be interesting to see the test scores, to see how my kid does on the first days back from break, how the year progresses. Stay tuned!

The First Few Days of Kindergarten - August 5, 2013

So far, so much better than I expected, though the first two days were more about easing into the school year and we have 177 days to go...

The little blonde girl with the little green walker...

Let us address my concerns from my previous post:

Did the new teacher read her IEP yet?

Not exactly. Her new general teacher is overwhelmed right now - it's her first year with an inclusion class and she seems...a bit freaked out. This teacher also has 25 kids in one class - in this inclusion class! - and I think she's a bit understaffed (a temporary situation that I was told about) and she's managing all the things that go with a new year. I walked into the open house last week and immediately launched into questions. Mistake. Open house, I learned quickly, is not the time for in-depth discussions nor for freaking out a teacher. Oops. She said she'd looked at the IEP briefly and basically told me to talk to the special education teachers. Which I did - and they did read it and were pretty knowledgeable of my kid. It will be OK.

Did the staff set up a meeting with the rep from the talker company yet?

One of the special education teachers did! She said she was the only one who could make it but it's so much more than I'd hoped for.

Is there a new physical therapist all set and ready to go?

Yup. And apparently she was VERY impressed with all that my kid can do, including not only going on a swing but pumping appropriately! So now we can set a baseline and just move forward. Exciting.

Who will carry her talker?

Everyone seems to take turns. It's fine. We switched out the initial backpack I sent for the thrifted laptop bag we'd been using at home. There is some trickiness that I may get into in a future post, but the logistics seem to be OK.

Who will make sure she gets her special (IEP-mandated) mid-morning snack?

They're on it. Last year we did drinkable yogurt, but it seems this year that refrigerated snacks are more difficult (and I am not a fan of the sugar in drinkable yogurt anyway) so we are going to be sending other things instead. I hope to eventually wean her off this need, but for now it really does make a difference in her behavior for the rest of the morning.

How exactly will she get to that tricky inaccessible-until-you're-on-it playground?

Well apparently I underestimated my girl. On the first day, they did have a wagon ready for her, so they could bring her quickly to the playground (which she can then navigate). However, teachers and the principal told us that she's actually going up and down the stairs very well and nobody thinks the wagon will be necessary after a while. Awesome!

Will they understand just how smart she is and let her express that while also managing her outbursts?

One of the aides told me on the second day that if she could just work with my kid for the rest of her life, she'd be happy. My heart sang. Everyone seems to get what's going on, at least so far... On the other hand, on day three she reverted to one of her basic attention-seeking behaviors - tipping her milk over, followed by tipping her salad dressing over - giant mess. It's a very deliberate choice that she makes to do this (I've watched her look right at me, pick up her cup, and dump it onto the floor with a laugh), and I found out it happened - as always - because she had decided she was done with her lunch and nobody was noticing this. It's a behavior we struggle with at home, and I let her aide know that - and that we all need to work together to stop it - she needs to learn to wait. I'm hopeful that it's just her usual testing phase and that once she learns she's not getting away with it, she'll quit it. I hope. It's frustrating for us all - including her!

Plus, after seeing drop-off on the third day of school, I was reminded that there are neurotypical kids who are handfuls-and-a-half too. It's just...kindergarten.

The rest of my "what ifs"...well, we'll deal with them. It's early early days.

Friday morning was the first Community Circle of the year (where the kids sing songs and announcements are made - there was even a faux-flash mob where the teachers got up and danced, which was very cute). We were in the corner and watched my daughter walk in with her class. She pointed at us and said aloud "That's my mom and dad!" and then she essentially behaved herself. She clapped, she sang, she stood (with help - I watched to make sure that went smoothly and it did) for the Pledge of Allegiance (in English and Spanish!). At one point her main teacher turned to give another kid a thumbs up and my daughter saw and LIT UP and gave a thumbs up back - and her teacher's face lit up too, and I got all choked up.

I didn't really want my kid to be a trailblazer yet again - part of a teacher's first inclusion class again? Really? We did this once before and it was rough. But it seems like this time around there's more support for the teacher. Mine is the only kid on wheels in the school as far as I know, but it seems like accommodations are being made quietly - we were told that a railing will be put in on a certain set of stairs, for example, and I have a funny feeling we'll see some new ramps here and there too.

And meanwhile my daughter is taking more and more steps - I think we're up to eight at a time - and her longtime PT suggested that she not even use her walker at all in her classroom, so I've passed that along to her teachers. She can cruise, crawl, or, yes, step. Her PT said we need to teach her to view herself differently now - as a kid who is upright and who can walk. The fact that every time we turn our backs she's laughing and walking (and falling) suggests to me that we're on our way.

So for now, I choose to believe that we will have a very good year. But I will keep on updating along the way.

Calm Before the Storm (er, the first day of school) - July 29, 2013

I thought I was ready for this. I really did. My kid has been going to "school" of sorts since she was three. She was enrolled in preschool for two years and then Georgia pre-K for a year, and our pre-K program is just like what kindergarten was for me when I was little. Very academic and structured (and fun!).

We've had IEP meetings for three years, we've dealt with people getting used to her walker and talker, we've dealt with uncooperative people and warm and wonderful people.

But yesterday at a welcome back social, I started to realize how not ready I am.

My daughter starts kindergarten on Thursday, August 1. (Yes, we start a bit early. We're on a 6-week-on 1-week-off schedule, so by September we already have a vacation. I do not love this cycle nor schedule but it is what it is and I love our school system so this is something that I have to accept.)

Brand new school. Brand new teachers, staff, paras, therapists. A new building with stairs to navigate (and an elevator - and she did fine on the stairs when she went with classmates for a no-parents-allowed school tour, but still). A new schedule. A new everything. Starting from scratch.

Did the new teacher read her IEP yet?
Did the staff set up a meeting with the rep from the talker company yet?
Is there a new physical therapist all set and ready to go?
Who will carry her talker?
Who will make sure she gets her special (IEP-mandated) mid-morning snack?
How exactly will she get to that tricky inaccessible-until-you're-on-it playground?
Will they understand just how smart she is and let her express that while also managing her outbursts?
Will there be someone to explain to this entire population of children that my daughter is both different and the same?
What if a third grader pushes her in the hall? What if a new classmate makes fun of how she talks? (Luckily she is in not only an inclusion class but also a class with four or five kids who have known her since she started preschool. I can only hope that they will help normalize a little girl with a green walker and talker.)
What if she cries? What if she has an accident? What if what if what if?

Eventually I will have to let go. (Eventually means Friday, I have a feeling.) We live so close to the school that I can see it out my window, and I'm not sure how I will manage the desire to run over at lunchtime to check on her. The obsessive checking of my phone to make sure nobody has called. The worrying.

Don't get me wrong. I am excited and thrilled and over the moon that my daughter is starting kindergarten. She's going to learn so many new things and make so many new friends. She's a really resilient kid, and she's incredibly friendly and funny and she has a way of charming everyone around her. Within days of starting summer camp she had the entire group wrapped around her finger (we walked in one day to her holding court at a table, cracking jokes with her talker while the kids listened and laughed).

All of her final pre-K progress reports indicated that she's essentially at the academic level she should be to enter kindergarten.

Every day she says (verbally or with her talker or signs or a combination of all three) some variation of "School? Tomorrow?"

I've updated her talker with her new teacher's name.

I may not be ready but I am fairly certain that she is.

It's going to be fine.

I won't cry that morning at the welcome breakfast for parents. I don't think...

Brief update 8/2/13: The first day of school went REALLY well! I didn't cry that much! I'm excited for the new year, and I'll have a post about everything new and exciting next week.

Now We Are Six...

I have a GIANT (currently two parts! it may grow to three before I finish!) post series about our recent vacation/adventure that will go up this week, but first I need to say happy birthday to my beautiful girl. Six is going to be a big year for her - her speech has taken off over the past month, she is up to eight steps, and she's gearing up to start kindergarten! I can't wait to see what is around the corner for us!

A Few Things That Are Making Me Happy Right Now - June 5, 2013

• My daughter has started camp and it is going very well. The place we chose focuses on inclusion - during the year it's an inclusive preschool as well as a place for disabled adults to socialize and learn skills, and in the summer it continues with inclusive camps. They had no issue with accepting her talker, her walker, or even some of the behaviors I hinted at. It's only three days into it (she's not going for the whole summer so three days is a large percentage of the time) and the experience has made me very happy. She's using her talker to crack jokes and interact with her classmates, she gets to go on fun field trips, and she is eating eating eating!
• Also good - the summer camps continue as she gets older, so if this really works out (and if we can swing it financially - it's not cheap) she could go for the next few summers.
• This is the first summer in years that she's actually had activities to do and that my husband and I are able to get work done. First she was a newborn, then an infant, and then she was diagnosed and we couldn't figure out camps that were appropriate for her (if they even existed - most that can handle inclusion seem to start at around pre-K age) so mostly I would go walk around town with her in her stroller, have playdates when possible, and occasionally take advantage of the local workspace that offered a sort of preschool-drop-off (we helped them understand my kid's needs and after a while she was just one of the gang). She and I were both often bored. (I also would sometimes drive us to the pool - being brave! - but as she got older, she got harder to wrangle by myself.) Now she's totally entertained, making new friends and having a ball, we're all refreshed for having fun on the weekends, and during the week I can get things done - work things, crafty things (which is also work - Etsy and local stores need to be restocked!), and knitting things. (I have a not-happy story about knitting that I may share soon, but the silver lining was that I am knitting again.)
• She had her first neurologist visit in two years (and we hadn't been to this practice/doc in three years - long story...) and it went beautifully. She's making progress, doing great, keep doing what we're doing, work on rewiring the brain and strengthening her core. Good.
• As for me, my good cholesterol is up FIVE POINTS from last year. Before I started Weight Watchers, it had been very low for several years. Last year - tested shortly after I hit goal - it had gone up. This year it's up again and it's now in the normal range! And I'm going to work to keep it going up!
• Chia pudding is delicious. I can't stop eating it. I smooshed together several recipes but basically I combine 1/2 cup of vanilla almond milk, 1 tablespoon of chia seeds (plus a bit extra), a packet of Stevia (because I have lots left from when I bought it to use in my coffee and found that to taste dreadful). That's it. I also made a version with cocoa powder - it needed extra chia but it is GOOOOOOD. Low in points/calories, high in so much good stuff. Love.
• My long-term work contract is over so I finally had time to go back to YDFM (and drive - an uneventful short drive after about six months of not being behind the wheel at all). That's where I replenished my chia supply as well as stocked up on a ton of fresh - mostly organic - fruits and veggies and I'm back on the green smoothie train. I recently finished a slew of books about healthy eating, processed foods, and so on, so I'm feeling inspired.
• Speaking of feeling inspired, I re-started the Couch to 5K program. Today was Week 4, Day 2 but...I hurt my back while running. OK that's not making me happy, but I have a chiropractor appointment scheduled and I know I'll be back on track soon.
• America's Got Talent is back for the summer! It seems like each year there are lots of acts that builds on something that was done the year before (an act that does shadow/dance, an act that dances in the dark with electronics, a strength act, a pole act...) but I still am always thoroughly entertained by this show. Better when it's watched the next day via Tivo with lots of fast-forwarding...
• And we have an upcoming vacation that I'm very excited about because we're taking a short detour to one of my favorite places. Plus I will be seeing people I haven't seen in two or more years - relatives and friends. Hooray!

How's your summer going?

Our AAC Journey - Look What She Can Do! - May 8, 2013

 
Last June, my kid started the evaluation process with a therapy group dedicated to AAC devices. Within a few weeks, we were surprised to find that the therapist recommended the PRC Vantage Lite2 over a few other options - but it made so much sense, too. (And I owe that therapist so much because there's no way we would have come across that option on our own - but it was perfect.) After months of working with the office's device, my kid got her very own VL2 - and all of her teachers and therapists (including her other SLP) embraced it, met with the rep for PRC on their own time, and made sure to check in with me and ask me questions and ensure that we were all on the same page.

The image above is a small peek into what the talker has changed for my kid. The interview was a fill-in-the-blanks style discussion, with the teacher asking leading questions. But even though only simple answers were required, a year ago this still would've been impossible. Now? She was able to participate just like all of her neurotypical classmates -- and her personality shines through. She loves the bus! She wants to work at the grocery store! She loves her kitties!

(As an aside, apparently now she's getting in trouble for telling jokes in class at inappropriate times. I'm sorry, but that doesn't exactly upset me.)

And meanwhile, her verbal ability has grown so much this year - dovetailing perfectly with her use of the AAC device. She sings along in the car now. (She is very specific about what songs she likes - she's into the Rockabye Baby Madonna CD right now, and track 11 in particular. "Bor-dah!" she says, rather clearly. [Borderline!] She also likes to sing along with Lisa Loeb, the Nields, and - much to my chagrin - Kindermusik songs from classes we took together in the past.) She speaks in short but complete sentences sometimes. ("I want my iPad, please." "I want more Enchanted. TV. Please.") She's able to say words with multiple syllables. I feel confident that we are on the path that her SLP speaks of often, where she will be mostly, if not completely, verbal - someday.

But the talker is making that possible, is bridging that gap, and will always be there for her if she needs it. (This is like how I imagine her walker will be used - she is now up to taking eight independent steps or more - the other day she took two steps, stopped, stood, adjusted her stance, and kept walking to me - and I suspect someday she'll walk most of the time. But I also believe she'll need assistance in some form at least part of the time.) And without the talker, she wouldn't have been able to do things now. She wouldn't have been able to talk to the President or ask how many more minutes until we get home or tell me that she wants to wear the black shirt again. In my experience, it is absolutely true that AAC encourages verbal speech and does not discourage or limit it.

I say this all the time, but we continue to be surrounded by positivity. People who believe in her, who have never said "she can't" or "she won't" and who open themselves up to possibility. We've started the process to the kindergarten transition, and we've already started working on getting the PRC rep over to the new school to meet with the new teachers. We. As a team. When my husband and I moved here, we knew the school system was "good," but we didn't know that we'd need it to be good in very different ways. We definitely have been lucky in that regard.

We're no longer with the therapy group that set us on our path, so I have been busy immersing myself in understanding Minspeak and the VL2. I will be taking an introductory class in two weeks and then following that up with whatever else I can do. I have already programmed more riddles into the device - like I said, I'm not entirely upset that apparently my kid is the class clown... (Sorry Lost Voice Guy! You might have some competition after all!)

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Therapy overload? - April 10, 2013

I've seen other parents write about their kids having therapy overload or burnout, but I truly didn't think we were there. After all, my kid loves her therapists. She's known almost all of them for a good part of her life. They're like family. They play with her - nothing is too terribly taxing yet (though sometimes her PT makes her do things she doesn't want, mostly it's just that she wants to swing and instead her PT needs some treadmill time first). We make the whole routine as fun as we can.

But I think we're hitting the wall.

For two weeks straight, when she'd walk into her speech therapist's room, she'd scream and cry and sign/say/use her talker to say "home." She'd kick and yell for a while after we left (speech therapy is my time and my husband's time to run to Target for 20 minutes - so exciting, and now there's even a new Starbucks in there, oooooh). This past week that behavior stopped.

But don't think that this means anything improved. Instead, this past week when we walked into her physical therapist's room, she flipped out. She screamed and howled at the loudest volume I have ever heard. She smashed me in the nose. She nearly broke my husband's glasses. She almost hurt herself a few times. She refused to communicate in any way, shape, or form. All I could eventually get out of her in the moment, with her talker, was "Sad." But that's her generic choice she uses when she's crying - we're trying to teach her variations in feelings, word-wise, but we're not there quite yet. Maybe she really was just sad, but I think there was a lot more going on. We had to drag her out without doing a therapy session (though it's been rescheduled).

In the car, once she'd calmed down a bit, she used her talker to say that she wanted to go to the farmer's market to buy fruit - echoing back to a discussion we'd had in the morning about our plans for the upcoming week. To me this indicated that since her routine was out of sorts during spring break, she thought that's where we were going and was upset that it was therapy time instead. (Today, two days later, she used her talker and verbal language to tell me that she wants to ride the bike and go outside with her PT. So I guess she's over whatever drama she was having, but in the moment it was very, very hard for all of us.) (Also, as an aside, when she finally went to the farmer's market with her daddy, she came home and said to me "I bought fruit." Which was very exciting, as you might imagine. But I digress.)

In light of all of this, we decided it was finally time to leave the therapist who works with us in all things AAC. It absolutely breaks my heart that we decided this - the therapist herself is fine, but it takes an hour to get there and an hour to get home, and there's usually traffic which not only adds time but also stress to my husband (who is the driver in the family). So that was two hours of travel for a 45 minute appointment (which started out at an hour until Medicaid messed around with codes and billing...). We'd also been pulling the kid out of school early once a week in order to make it to the appointment on time - something we knew all along we wouldn't be comfortable doing when she started kindergarten in August.

At this point, I feel like I've learned a lot in how to use and program her device and she's figured out how to use it very well. I'm immersing myself in the tips and tricks provided by PRC and by Facebook pages of AAC experts, and I have the PRC rep out there available for questions and to help talk to the new school's staff. I hate leaping without a net (no specific therapist for the device), but I was starting to not see as much of a benefit as I did in the beginning - and unfortunately the benefits I did see didn't outweigh the problems with the distance. Before we left for the final session, the kid used her talker to tell us the name of her therapist and "speech therapist" before waving her hands adamantly and saying "home." There was no mistaking what she was saying. (She did go on to have an amazing session, and I cried a bit when we explained the situation and had to say goodbye, but it otherwise went very well.)

We're only doing OT alternating weeks, and it's only a half hour each time, and so far she hasn't freaked out on that. Horseback riding is a special treat - I don't think she has any idea that it's therapeutic.

Plus she gets PT, OT, and speech in school a few times a week and her teachers are all always trying to help her succeed in non-specific but therapeutic ways. And then of course me and my husband...

That is a lot of therapy. Yes.

The progress she's making in therapy is astounding - I'm not willing to drop anyone else from her routine at this time, though three of the other therapies are only 5-20 minutes from home at most and while hippotherapy takes longer to get to, we go with friends, we have pizza every week, and it has very unique and specific benefits that I see each and every time we go. (And the fact that my kid is telling me knock knock jokes and giving me details about her day and telling me she wants the "green swing" means that the drive for the AAC therapy was beyond worth it - if the practice was closer, we might have continued.) But I can see that she's getting sick of it and starting to resist. We'll work on it. We'll figure something out. Her summer camp is inclusive but doesn't include specific therapies (school does) so she'll get a bit of a break before she starts kindergarten in August.

If you're a special needs parent who found my blog (I think I'll probably link this one up on the Love That Max linkup this weekend), have you experienced therapy burnout with your kid? How did you handle it? And please, stay a bit - say hi! Check out some of my other entries! Point me to your blog! I love comments! (I have them filtered just to weed out spammers.)

The Day My Daughter Hung Out with the President - February 2013

One Sunday night in February, I was getting ready for my daughter to go to camp the next day (held in the same building as her pre-K program since school was out for the week). Ping! Up popped an email from her teacher, which I thought was odd because while we always get a weekly update, school was out.

The email shared the news - President Obama had chosen Decatur, Georgia - my city - and College Heights - my daughter's pre-K school - to visit on Thursday.

The President. Would Be Visiting. My Daughter's School.

Wait...what?????

!!!!!!

I screamed! A lot!

Let us get this out of the way right now: I'm an unabashed Obama fan. If that bothers you, stop reading my blog. And please do not try to get political with me because that is not what this is about. Thank you. 

So the real reason he was coming to Decatur was that he was also going to give a speech about universal pre-K. He'd picked my city/my kid's public school as a great example of that program working here in Georgia.

We were given very few details as the week went on. The school would reopen during vacation and all of the kids were invited to return for a full day. No parents would be allowed in after dropoff. That's pretty much it. (And yes, I was jealous for a few minutes of my five-year-old child.) Her teacher did call me though - and she asked me to add something special to her AAC device - "It's nice to meet you, Mr. President."

The day of the President's arrival (Valentine's Day!) was basically like any other school day - except with a metal detector and Secret Service agents. I was afraid that the AAC device might cause problems, but I had asked earlier and was assured it wouldn't, and it was fine. Overall, the security process was easier than going to an airport - I even got to keep my shoes on. They ran a wand very quickly over my kid - she just thought it was funny. The walker got a cursory glance. The talker was looked over and returned to me to put in its case. Everything was kept very quick and casual.

As we walked down the hall, some of the Secret Service agents noticed my daughter running with her walker and smiled and cheered her on. "Look at her go!" But we noticed that there were two VERY SERIOUS agents who did not smile or do much other than look menacing stationed outside of her classroom door. (As they should!) And there were a few other clues that the President was going to be going INTO HER CLASSROOM. There are several pre-K classes, so this was a BIG DEAL. (I found out later that it was chosen for reasons that you might not actually expect, but basically it was pretty likely just a coincidence that it was my kid's class or even an inclusion class at all - and still, it WAS my kid's class!)

I reluctantly left her in the capable hands of her teachers and then spent the day with a friend, watching for the motorcade. As it finally passed by me, after it left the school, I got a glimpse of Mr. Obama's head - he had cracked the window and was looking at us all, which was really wonderful. He wasn't buried in text messaging, phone calls, or paperwork - he was taking Decatur in. The only protesters/dissenters I saw were from PETA (they were dressed as elephants and their signs were about the mistreatment of elephants in the circus - the kids around us who were also waving at the motorcade were REALLY EXCITED to see elephants). It was one big fun party out there.

The President was taken to the rec center where he gave a rousing speech on the importance of early education - and he was introduced by my daughter's amazing teacher Mary, who happens to not only have won Teacher of the Year but also is the lead special education teacher for preschool and pre-K. I'm so happy for her and so proud and...yeah. Gushy gushgush.

And when we picked the kid up from school at the end of the day, she told us she played with sand, she mentioned the library, she gave us a thumbs up, but there was no mention of the great man she'd met. I checked the media and found lots of pictures where she's in the background (and you can see her walker in a lot of them and another classmate's Dynavox is front and center in some) - but I have been told that the press pool was only allowed in the room for a short time and then asked to leave, while the President stayed and worked with/met the rest of the kids and at some point took a group picture. The pictures from that portion of the day (taken by the official White House photographer) have not been made available to me yet, but I'm hopeful they will be someday. 

The President hung out with the kids while they did "small group" work - four groups of four kids, each one focusing on another learning activity. He also attended a school assembly and according to a very brief clip I saw on the White House website, he sang and did the hand motions to the song about community that the kids always sing. So everyone in the school got to interact with him a little.

And as for my daughter specifically? She was able to greet the President with her AAC device (a Prentke Romich Vantage Lite2 for those new to my blog). He asked her name and she was able to answer. And she got a hug! And I realized that if this had all happened before she got her talker, she wouldn't have been able to do most of that. She is getting better with her verbal speech and among other things, she can say her name--and she can even say Obama. But she's hard to understand right now. Instead she was able to have a CONVERSATION. It still makes me choke up.

There are several children with IEPs in my daughter's inclusion class (and more than one who uses an AAC device). The President was also in a room with children of all economic backgrounds. Children who were born in the United States and children who were born in other countries. Children of all colors, shapes, and sizes. It's just how Decatur is. He definitely noticed - he mentioned many of these things in his speech. I hope that somehow the inclusion model made an impression on him and that maybe he will think of this experience when fighting for things like insurance reform, which affects my kid directly.

So that's how my daughter got to meet the Commander in Chief, the President of the United States Barack Obama. And yes, I'm still a bit jealous.

When to fight, when to give in? - January 11, 2013

It is just so tiring to figure that out. My mother always told me to pick my battles, and I know she's right.

Sometimes I feel like I'm not fighting hard enough to win some of the battles when it comes to the kid. I want the therapist to do this, I want the school to do that, I want more, I want less, I want something specific - all for my girl. I push back, they push back, and eventually I have to figure out how much pushing I want to do. Sometimes I feel like I'm pushing too hard, even if I "win" the situation. Sometimes I stop pushing and back off and apologize and feel gross. Sometimes nobody pushes and my requests are approved and we all sing a happy song and skip away. (This actually happens pretty often - I'm lucky. I love my kid's team.)

But right now I'm in a situation where I'm throwing my hands up and saying "OK, fine, I'm not fighting. You win. I give up."

In October of last year, I received a form letter to complete the first of two steps toward a renewal application for something for the kid. I did that step. Then I waited for the letter for step two. It never came. The year before, I'd gotten the letters within days of one another so I was confused. I made about 100 phone calls - dead ends, answering machines, live people - and the final answer I got from someone was that it was early but to go ahead and submit the giant Pile of Paperwork as soon as I wanted - that someone even said that the letter now wouldn't be sent out because I'd called.

But there also was a strong implication that this someone was leaving the position shortly...and possibly didn't really care all that much. The questions I asked got very frustrating answers. I felt a bit confused. No, I felt a lot confused.

But better to be early than late, I thought, so I got everything together and submitted the Pile of Paperwork in November. I even got a signed receipt for the Pile when I dropped it off. When time went by and I didn't hear back, I figured it had been accepted. Hooray. Done for another year. Fantastic.

And then about a week ago I got the very form letter I'd been waiting for back in November, asking for...the Pile. Not "something's missing" or "submit it again" but just the basic "Time for your Pile!" letter. Oh.

Now here is the point where I could've fought. I could've shown the receipt to...uh...well...and here is where I stopped wanting to fight. Right there. So I find a person to show that receipt to - I don't even know who that would be, honestly - and he or she says "Yes, that's nice, and I'm sorry, but we don't have that Pile and we need it again." Or I anger someone (you don't want to make any of these people angry). Or I waste precious time arguing that I already submitted the Pile and the deadline creeps up anyway without changing. Or the original Pile is discovered after all, I get some apologies, and the process continues. Who knows.

Instead I cried for about half a second and then I set about printing out everything again (I had a good chunk of it scanned into the computer in case of this very scenario), requesting updates from those who provide such things (unfortunately a lot of what I'd scanned in was already outdated and I needed fresh copies of things), getting signatures compiled again.

I learned from this process that I can turn around that Pile pretty quickly, so maybe I didn't need to worry back in November. Maybe I should've waited. And yet I've heard stories of these form letters arriving late. Or arriving two days before the due date. Or arriving in the middle of a holiday break. It's hard when you rely on a team of others to provide all of the pieces of this project. Everyone has to be available and able to send what is necessary within a timeframe.

(You'll notice that I'm avoiding specifics. That's to protect my privacy and also to avoid bots. But if you think you've guessed, you probably have or at least you're in the right area of the universe.)

I would rather redo an entire project than argue that I already did it, delivered it, and received proof of delivery. That's where my fight is.

And I am obviously still second-guessing that choice. But it's the choice I made. Luckily the kid's team is amazing and the second Tree-Killing Pile of Papery Doom is ready to go next week. Now I know for next year. And the year after that. And the year after that...

But I learned a lot of lessons - including that I can get ahead of myself and that sometimes it's best to let things sit and breathe. I'm trying, anyway.

It's my understanding that our Pile is relatively small, actually...

Our AAC Journey - Still Moving Forward - December 19. 2012

Just a little update.

I continue to be pleased with our choice to go with the PRC Vantage Lite2. I've heard that the prototypes for the next generation are out (or maybe they're available now? if not, they will be VERY soon, for sure) but I am so so so glad that we grabbed the VL2 before it was discontinued. It's just the perfect size and shape for my kid as she uses it every single day. If nothing else, I'm glad we didn't wait because we might have still been waiting to even submit the paperwork--but instead we've had this device for two or three months already.

So far we've been working with the 60+1 system. In the nuttiest of nutshells, that means that she can have up to 60 icons on a screen at one time, and each icon corresponds to either a single word or a full sentence/question/joke/thought. You press the picture of an apple that says the word "apple" above it and the talker says "apple." You press the picture of a building that says the word "school" above it and the talker says "school." But her therapist finally said that in January we could move to the actual sequenced language (Minspeak) with the talker, which is, to me, the way it's really meant to be used and the reason we chose this over other devices/brands/options. I am thrilled. And again, the best way I can explain it (and it's new to me - I've read about it but we haven't actually used it yet, so my explanation may change down the road) is that instead of a one-to-one word-to-icon correspondence, the icons start to mean entire groups of words and you match them with word-families. That image of an apple now means all sorts of apple-related things - it's how you pair it with an icon that represents a noun or verb, for example, that turns it specific. Er...I think. In any case, it's a far more complex language, but it means that fewer icons represent more words. I'm just...really excited. (Also the plan is for her to go to more icons per screen at some point, though 60 seems to work well for now.)

This week at her school, my kid indicated in various ways (speech, gestures, her talker) that she wanted me to add the name of one of her friends to it. I didn't have time, so I said yeah yeah, I'll get to it later. Well, she remembered it when we picked her up, so I did do a quick add of that child's name to the Classmates grouping. Today the therapist mentioned that this was an impressive use by my kid of the device - I'm thinking it has to do with the understanding that we can add things, that the device helps her talk, and that she can choose what it says. Or maybe I'm totally wrong - it just was nice to have a therapist say something like that.

She mostly uses single words to get her point across, rather than full sentences - something I believe will change when we move along to sequenced language. I mean, right now it's a real pain to say "I want a cookie" and much easier for her to just navigate to the word cookie. (Yesterday at school she said "want brownie cookie" to ask for, well, a cookie-like brownie treat a classmate had brought in. A few weeks ago she told me she had a "chicken hamburger" for lunch - turns out it was, in fact, a chicken patty on a bun.) But she uses it so fluidly - ask her a question, she navigates to the right page (again, this will change soon) and finds the word/answer. She also likes to use her quick hits to tell people her name, ask questions, and say hi/goodbye.

Oh and she ordered her own drink at a restaurant the other night without prompting - as I was telling the waitress I'd like a glass of water for her, she used her talker to say "drink milk." As I laughed, she then said, "need drink water." (She got milk. I was so proud!)

Basically this device has really changed our lives. It's still not a magic wand. She still doesn't take the device and tell me her thoughts and dreams - sometimes she won't even tell me what she wants for dinner. But she's only five years old and she's only had her own device for a few months - we've come so far in such a short time, I am excited to see what the next months and years will bring! (Her other speech therapist did say she fully expects my kid to be primarily verbal in a few years, but I think that she'll at least need a device for clarifying things or for certain situations, just as I expect my kid to walk unassisted - she already takes many steps on her own - but I know she might need her walker for longer distances or in certain situations.)

And finally, I've found my kid a role model. Yes, my daughter can grow up to be a foul-mouthed stand-up comic just like Lee Ridley if she wants to - a choice I definitely encourage! (On Twitter, he told me he approves as long as she doesn't steal his jokes.) If you go to Lee's site, watch how he delivers his comedy - his device does the talking, but he uses his body and face to deliver the joke himself. And, dammit, he's funny!

Stay tuned because switching to sequenced language is a huge change - one I embrace!

Progress Progress Progress - December 5, 2012

Sometimes it can be draining when I get progress/status reports about my kid. Often they're comparing her to other kids her age - and of course she's nowhere near them in terms of many of her skills. She's nowhere near kids years younger than her in some ways. It's tricky because right now she's sort of locked into her own body - some of the skills that standardized tests check depend on other skills that are taken for granted. If you can't stand unassisted, for example, then there's no way you can hop on one foot. If you can't hold a pencil properly, then you can't trace a shape or start to write letters. If you can't speak clearly, then you can't use multiple adjectives to describe an object. That doesn't mean you don't know what hopping is, or that you don't think of things with adjectives, or that you don't know the difference between a circle and a square, but it means...you get zeroes on the test and "only performs at a blahblah level" statements and a message that you're not where you SHOULD be and that this is bad.

Today, however, we had my kid's yearly parent-teacher conference, and the progress reports were about her and her progress alone. They were about her IEP goals and about the skills she's achieving that are age-appropriate but in terms of how she does them rather than whether she's doing them "properly" or whatever.

My heart soared.

When she started preschool at age 3 (in the older-2s classroom - the cutoff for kids is September and her birthday is in the summer, so she's one of the oldest in her classroom but her classmates start to catch up within a few months) she went for four hours a day. And she would scream. And scream. And scream. She'd be sobbing when we picked her up. She slowly started to enjoy school, but her skills were slow to catch up. She was always super social but some of the other things that were expected of her...weren't happening for various reasons. But now, at age 5 and in pre-K, she's flourishing. She can do so many things that her peers can do - and beyond - she just does them in her own way. She's demonstrating, finally, that she is IN THERE - as I say over and over and over. And her teachers - both special ed and general ed - are giving her the opportunity to shine.

Today, with each "She can do this now" on the list or each "She does this with 60% accuracy," my smile grew more and more. We are so lucky to live in the school system we're in (we knew it was good but we didn't know when we moved here that we'd need a bit more than just "good schools" in place!). We are so lucky that her teachers are on board with her, that they recognize her challenges, that they're using her AAC device as her voice - as part of her, not as a toy nor as a distraction, that they're encouraging her to do things - and to do them independently and to be ready for kindergarten. (She just needs to learn to wait her turn and to be patient. But as her impulsive and impatient and headstrong mama, I say that she really is just acting like me. Oops.)

My kid's prognosis has always been bright. Honestly, nobody has ever told us "she can't" or "she won't." Neurologists, developmental pediatricians, specialists, and therapists of all types have always said "she will" and "she can" over and over and over. I haven't taken this for granted - my husband and I have worked with our daughter to make sure that these predictions come true. It's different than fighting against the negativity I know some parents do face - I don't have that "I can't wait to go back to person X and show him/her what my kid can do now!" feeling - but I still have that mama bear instinct that makes me want to see my kid succeed like all parents want. For me, it's more of an "in your face, society!" feeling than anything else.

So today I celebrate my kid's amazing teachers and therapists (in and out of school) and the community in which we live. And I celebrate progress. She's come so far and she's only five. ONLY FIVE. Every day she does more and more and more and every day I cheer her on. Because she's awesome.

Her Wicked Sense of Humor (and an AAC update) - October 25, 2012

My kid continues to make excellent progress with her AAC device. Nope, we didn't have overnight magic - I have learned not to hope for that anymore. Things take time, patience, energy, and...well...time time time. And time. But. She takes it to school every day and the teachers work with her to help her find words and participate in discussions. Her therapist is carefully leading us through the maze of how to use it, where words are, and how to help her communicate - and she keeps me in check when I want to move things along too quickly. (Plus her therapist is great at slowly unlocking more words/pages each week--she just added a hippotherapy page!)

At home, the kid uses it when she feels like it and doesn't when she doesn't (to mama's dismay - but I am learning to back off) but she does things like ask for milk vs. juice spontaneously, and she also has been sharing her excitement about an upcoming field trip. Overall, I am just thrilled with how everything is going. I'm so glad we went in this direction with this particular device! But...I want to fast-forward to mastery, as I always do, and I want to jump into sequencing, and...yeah. But when I step back and see how far we've come, I'm bouncing off the walls again.

Meanwhile, she is absolutely obsessed with me taking videos of her dancing. She will take her iPad and put on the song "The Sid Shuffle" from Ice Age 4 (they danced to it at school), carefully prop it up on the couch, step off the couch, and then whine and point until I get my phone out and film her. If I fake it, she knows. So I have lots of short videos of her dancing, falling, wiggling, whining, and more. Yesterday I caught what is probably my favorite, so I decided to share it here.

In brief, she notices her SMOs (ankle braces) on the floor, picks one up, dances with it while standing completely unassisted, and then tosses it aside. That little smirk on her face at the end kills me as my giggles probably reveal. I imagine her thinking, "Pssh. I don't need those, I stand and dance just fine!"

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• You have one day left to take advantage of the MacHeist 4 bundle. For $29 you get over $600 worth of Mac apps. Amazing! (There are also free apps that you can access with a tiny bit of hoop jumping.)
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Our AAC Journey - It's here! - October 11, 2012

Let me assure you, although I'm sure you already know, that when you are the parent of a special needs child you NEED to be a squeaky wheel. Squeak squeak squeak! Several times now, we've been on a waiting list of some sort and I've called to follow up and because of simply calling, I've moved us up and/or just gotten us into whatever it was we were waiting on. I hate "bugging people" but I'm always polite and friendly and I just stay on top of it. I have to, even when I don't want to, even when the phone grows teeth and wants to bite me, even when my anxiety swirls. I give myself a bit of love and Reiki, I pick up the phone, I swallow the nausea, and I call and I call and I call.

The talker is just part of that long line of squeaky wheels. Because I was copied on a letter, I was able to make PDFs of that letter and forward them to the proper channels rather than waiting on said channels to receive their own copy of said letter, find it on a pile on someone's desk somewhere, open it, sort it, file it, think about it, and make a final decision. I really believe I shaved weeks off of our waiting period. And now here it is! She has it at school today for the first time ever!

Reality is sinking in now though. This is going to be a long, complicated road to learning how to use the AAC device daily, fully, completely. Despite the fact that my daughter has been using this device for a few months now, she's been using it once a week (and sometimes less, depending on our schedule) and in a very limited context. Now we own this and it's going to be with her all the time. It's not always the easiest system to use, even for me. But we will take it one day at a time, one word at a time, and I believe that soon - soon! - she'll be able to tell us so many things. And I can't wait to hear them! And having this device in our hands makes me so glad we went in this direction, made this choice. Plus, we have already noticed that over the past month or so, she's been saying more words in a clearer way than she was before - a credit both to her amazing speech therapists and to the device. I believe someday she won't need it at all. But someday is someday and now is now - and this is so good for us right now.

(For whatever it's worth, I've seen mockups of the next generation of these devices and not only would we have had to wait weeks or months to place our order but one of the new ones seems too small for my daughter's hands while the other seems too large. We would've made it work, but the one we have right now is baby bear's juuuuust right for now. We'll see what she needs when she's older.)

(Oh. And I am THRILLED that the SFY app lawsuit seems to have been resolved - that app may become a valuable tool for us either when my kid is older or if - heaven forbid! - her device breaks and we have a time period before we get a loaner/get her device fixed. I've been quietly but intently following that closely and I cheered aloud when I saw the post yesterday!)

So for now we're just playing around. I took my first crack at programming last night to update her school's name (her therapist didn't know it) and to add "Good Morning" to a topline level. Later on I'll start digging deeper into the programming - I have a list of things that need to be added either by me or her therapist. But I've found this part of the process, so far, pretty intuitive. I just have a lot to do since she's not yet at the stage where she could do it herself or just type things. (Teacher names! Therapist names! Friend names! Target! Raging Burrito! Signing Time!) (Favorite thing I stumbled on? The device has knock knock jokes and riddles built in. I have to teach her how to access those...)

ETA/Update: Yeah, her therapist just wrote me after I sent her a bunch of programming questions asking me very gently and nicely to please hold off on doing anything else and to let her handle it at first. I actually greatly appreciated that - while I kind of now get *how* to add things via the machine itself or the software, she knows what she's doing as to when to add what, where, how, and when! She's amazing and we are so lucky to have her on our team. So for now...I'm being as hands off as I can stand with this machine. Hard for me as I want to do everything Right Now By Myself but I trust the process and the experts too!

Here's a video of her telling us her name. For the record, she has been able to say her name for a while - but I suspect nobody but me would really understand what she was saying (Ryaoooo! Baaaah!) and now when we're at the grocery store or the park and someone looks at the sweet little girl and asks her name, she'll be able to reach over and answer loud and proud. This morning she also told me her favorite color is purple - while I didn't know this for sure, I had my suspicions, and as you'll see, we chose a purple edging for her device for that very reason. (It's so cool, you can snap various colors in and out, so if she's having a green day, we'll change that up!) Note: We were accidentally sent the wrong keyguard (45 not 60, I believe), so right now we're managing without it but hopefully we'll have the right one soon. She's doing pretty good without it though!

Our AAC Journey - Moving Right Along - October 2, 2012

First, my kid rocks at using a talker when she's at the therapist's office.


Sorry the video is a wonky size - I'll try to fix that sometime in the future.

Her therapist brought her out to us and had her ask for juice with her talker (well, the therapist's talker - I think that's a VL1 and my kid will have a VL2). If you can't hear it, it says "Drink" and then "Juice." Notice that while she needs a tiny bit of wrist support, she needs no guidance to find those buttons. Every time I watch this, I get chills - and further excited about how much more she'll be able to tell us soon. And then we had to model for her by answering using the talker and as you can hear, I didn't know what I was doing at all - so mama has to learn too. And I CANNOT WAIT. (Also, when she gets her very own talker, it will sound more like a little girl's voice, haha.)

Second, at school, she's using a very very very simple AAC device and is putting together two and three-word sentences consistently. Because she's a genius, obviously.

Third, this week after a few follow-up phone calls (I was procrastinating making one more and figured I'd do it tomorrow), I received in the mail the notification from Funding Source #1 that yes, they will in fact cover her talker! (Of course there's the whole "after deductibles and co-pays and whatever else we feel like saying you have to do" part of that letter, and they denied coverage on the carrying case, but I was expecting a full-on denial from FS#1 for various reasons, some obvious and some not so much, so even THIS was exciting!). Meanwhile, I was told by PRC last week that Funding Source #2 had already given its pre-approval. So it's covered - the funding step is OVER.

And that means HER DEVICE WILL HOPEFULLY SHIP SOON! (Next phone call today should shed some light on that bit.)

ETA: And indeed I have the confirmation emails now and it should ship by the END OF THIS WEEK!!!!

OMG OMG OMG!

Everything is about to change for my daughter. And for the rest of us too.

Stay tuned!

Learning Reiki - September 24, 2012

I walk the line between believer and skeptic a lot of the time. I want to believe, then my rational side yells at me, then my spiritual side overrides it...back and forth, back and forth. Mostly I have to see/feel/experience something for myself to fully believe in it. This can hold true for anything from a medical treatment to a psychic experience to whether the latest smartphone really is teh awesome.

As for my feelings on spiritual/non-medical healing/treatments, chiropractic was my gateway drug, I think. In the early days of her life, my daughter not only didn't sleep through the night, she would wake up screaming for hours at a time. I absolutely honestly don't have any idea what was going on beyond that it might or might not have been related to her (hypotonic) CP. I'd nurse her and rock her and my husband would carry her around and eventually she'd go back to sleep. Her pediatrician didn't really see anything specific going on. I ran into someone on the playground one day who suggested a specific chiropractic office locally that worked with children - it was something I'd considered already, I just hadn't had time to fully explore my options (isn't that always the way when you have a special needs kid? "This sounds good - I'll add it to the list...") so I took her up on her suggestion. It did help, and after a few sessions just for my kid I stepped in and started getting adjusted as well. Long story short (another entry for another day perhaps?) we eventually stopped taking my daughter for a variety of reasons, and I took a break, but I'm back to getting adjusted when I can - and I see and feel the results.

From there, I started getting interested in Reiki. My dear friend Dana has her own Reiki (and reflexology and life coaching) practice and so I experienced a few Reiki treatments from her and also took my daughter for a few. I absolutely saw results with my daughter and felt results for myself despite not fully understanding how I could when all Dana was doing was placing her hands lightly on me - or not touching me at all. Yet I felt hot, I felt cold, and I felt relief from various ailments.

Two specific stories of how Reiki helped me and my daughter:

• My daughter was having a playdate with Dana's daughter and freaked out completely into a tantrum of epic proportions. I held my daughter in my arms and tried in vain to calm her - and then suddenly, as if a switch had flipped, she stopped crying. I looked over and Dana had rested her hand lightly on the small of my daughter's back. That's all it took.
• My undereye muscle was spasming for two weeks. Dana suggested a Reiki treatment and I thought, well, I'm not sure what a medical doctor could really do for me at this stage and this can't hurt, why not. Well after a single 30-40 minute Reiki treatment, my eye stopped twitching. Just like that. 

As I learned a bit more, superficially, about Reiki, I discovered that it was something I could learn to do myself for me - and for my daughter and my husband and our cats and our friends and family - with just a (relatively) short class that Dana taught. (As in, not months or weeks, but days. Hours even.) Teach a man to fish...right? So I saved up every dollar I made from my button/jewelry business for several months and eventually I had enough to take the class with Dana. (Note: It's actually a very reasonably priced course, but I had to shove it into an already bursting budget so that's why I took it slowly with the saving up.)

The class was split into two parts - three hours on a Friday night, eight hours on a Saturday. And it was simply incredible. Every time during the 11 hours that my skeptic voice would start to whisper, the experience I was having would roar loudly back at it. I received four Reiju and with each I felt...something indescribable happening to my body, mind, and soul. I learned the full history of Reiki and of Komyo Reiki Kai (the style I was taught). I was able to practice on myself and on my classmates - seated and on a table. By the end of the course I felt confident that I could share this new gift with the world.

When I give or receive Reiki, I almost always start off by thinking "nothing is happening..." and then moments later I feel it. My hands and arms feel hot or cold or just buzzing with energy. I usually get hot flashes throughout my body and I almost always end with a sweep of cold. And then, whether I've given or received, I feel better. I feel more peaceful. Aches and pains fade to the background or sometimes disappear completely. When my daughter is the subject, she calms. I tried it on both of my cats - the cuddly, snuggly cat purred and licked my arm (he never licks me), while the standoffish yet loving cat sat still and let me place my hands on him for longer than usual (he has a bad back leg from an injury as a kitten and I'm really hoping I can give him some comfort). My classmates say my hands felt cold or hot depending on where and how I was placing them - yet my hands don't change temperature at all. I love it. 

This post is me trying to make sense of this mystical Japanese energy healing art that still, sometimes, appears to me as nothing more than one person putting hands on another. Yet don't most people crave more touch in their lives? If the simple act of the touch is all that comforts someone, that's fine and logical to me. But it definitely feels to me like more. Like energy is moving and helping and reaching out for healing.

Dana explains Reiki better than I ever could. She's an incredible teacher and if you are in the Atlanta area and you're either seeking a Reiki treatment or you want to learn to do it yourself, I would not hesitate to recommend her services.

So now I am certified in the Shoden level of Komyo Reiki Kai. (I plan to take Chuden sometime in 2013.) I hope it can help my family to heal however we need healing. I personally believe - ME and NOBODY ELSE saying this and based on NOTHING BUT my own individual experience - that if you have a special needs child, you might want to look into Reiki and, if you have the time and money, you might even want to learn to do it yourself both for you as a caregiver (it helps with anxiety and stress...two things I have more than enough of...) and for your child. There are no known contraindications or negative side effects to Reiki that I've heard of/seen/been told about, and it can be shared with someone in a wheelchair or on a bed - the receiver doesn't have to concentrate or even actively participate (though s/he *can* push the giver's hands away or move away if necessary - my kid does both - she likes to put my hands on her head), the giver doesn't have to go into a meditative state or do anything particularly special or have any special equipment (I may or may not yammer through both giving and receiving Reiki, ahem - it still works). Worst case, it does nothing, right? But best case, it can calm and help the body to heal (although it isn't going to, say, magically cure my daughter's CP - nothing is ever ever ever going to do that, I truly believe it can help her body work to its full potential). Maybe just add it to your list of "Hey, worth a try!" things - my own personal list is a mile long. 

Our AAC Journey - The Beginning - August 31, 2012

At the beginning of the summer, my daughter's amazing speech therapist (we'll call her M) sat us down and told us that she felt it was time to start exploring AAC devices for my kid. And we were all more than ready to accept this challenge. My daughter's speech has come so far in the past three years since she's been working with two very wonderful speech therapists (before M there was L, and L was also excellent). We actually understand many words now and on occasion a few multi-word sentences. My daughter also has signs - and she has started using her iPad to communicate in a very unconventional way by rejecting most of the free versions of the speech apps that I put on there to try out and instead using certain other games and apps to tell me what she wants. For example, she puts on a game about a monkey who eats fruit when she wants fruit, tapping insistently on whatever fruit it is that she wants (oranges, grapes, apples...) or putting on an app that features songs and scenes and insistently pointing to the scene with the ocean and the octopus while saying words like "water!" and making signs for swimming, pointing to herself and then outside...all while I was saying back "Yeah, well, it's cold. And the pool is closed. And NO WE ARE NOT GOING SWIMMING RIGHT NOW."

So you might say to me, Marla, your household has an iPad? That's great! You've got the technology already in hand. You're done!

I wish it were that easy. I have a few issues with using the iPad as a speech device for my daughter that are, I'm pretty sure, unique to our situation - I WISH this was not the case, and I suspect it will change as she gets older. But for now (she's 5), the problem is how stubborn she is with the iPad. She uses it as she feels like using it and she refuses to use it for just one application. Even at the new therapist's office (I'll get to that in a minute), she took an iPad she was handed that was fully loaded with a speech app and she looked at it, laughed, and immediately found the music, the games, and the other apps loaded on there. It's a very useful tool for her and for us in so many ways, just not this one.

So. We started seeing V and then S within a practice that is dedicated to all things AAC - it's their speciality and they are the best of the best. And it has been incredible. First we ran through all of the usual evaluation hoops - and my kid rocked them. She went to the smallest level of squares on a page and still was able to find spots within the grid. She sorted things into categories with ease. Every step of this process was met with smiles and cheers. She impressed the therapists over and over and over. It felt good to see my kid succeed when so many times evaluations are full of me making excuses or just being kind of frustrated.

We tried out different devices including the aforementioned iPad, the Dynavox, and the Vantage Lite2 (and one other that is lesser known but that we didn't care for so I'm not going to get into it). The Dynavox was really shiny, and the therapy practice said that almost all of the kids they see use it. However, they just didn't feel that it was the right choice for us, which surprised all of us (I really walked into that office thinking OK, Dynavox, that's it, end of story). The therapists said, among other things, that the number of options that my kid would need on a single screen would max out quickly with the Dynavox - and that the VL2 would offer that extension. Also we all agreed that we liked the VL2's language system better for her. Plus, the VL2 was lighter weight, had a well-placed handle (important for a kid who can almost kinda sorta walk-ish) and had fewer bells and whistles (give my kid a camera and games and Internet access and we're back to the iPad problem). So we chose the VL2. It just felt right.

And then I got a call telling me that while it wasn't public information yet, the VL2 was going to be discontinued shortly in favor of a newer system. So we put this all on hold for a week while I waited for news - or at least a press release - that never came. And waited. And waited. And was sad that we were so close and then, as always, an obstacle was thrown in our path.

At last we went to the therapist and said look, we have to move forward. We just can't wait. What do we do? And we talked it through and weighed several options (go with the Dynavox after all? wait? see if we can get a used machine? talk to the wonderful local support person about all this?) and eventually we all agreed that the VL2 was still the best option and that really, if you're getting involved with technology, you could kill yourself chasing after the next newest option. My kid has the iPad2. The iPad3 came out soon after - what am I going to do? Nothing. The iPad4 probably will be fancypants. I could never keep up. Technology is changing month after month, year after year. It's just a fact.

FINALLY the official statement from PRC was shared with me and then became public shortly thereafter - and it is that the VL2 is being discontinued because of a part issue. I think that because I knew this was coming, the blow was softened once it finally happened (because I was pretty much crying when I got the very first call about this). Also, PRC isn't taking away its support of the system, it's just not making any new ones. I have high hopes that the next generation of product that it releases will be even better. I will have a pang of sadness when that happens, wishing that we could have just waited that much longer to have that shiny new thing, but we couldn't. The right thing for us for now is available and therefore it's the thing that we're pursuing. And there is the hope that we'd get approval for a new machine before the magical five-year-window expired if we needed one because the case would easily be made that the machine we had was actively discontinued.

I am BEYOND excited and thrilled that in a few short weeks (because this is a done deal, the paperwork has been submitted and is moving along even as I type this) my daughter is going to have a new method of communication. And I am also so so so thankful to M that she put us in touch with V and S who are going to be holding our hands - literally and figuratively - every step of the way, teaching us how to appropriately use the machine, how to program it, how to maximize it for my daughter. I'm also thankful to our local PRC rep who has been open and honest with us and who is going to help us teach others around us about this system, and I'm VERY thankful for a school system that is full of excited people eager to reach out and help my kid. (They've been working with her with very basic AAC devices since she started preschool.) I couldn't do any of this alone and I am very lucky to have a supportive team surrounding us.

And so we wait. And I will write a new post when we have the device at home to let you know how it works out for us.

Random Roundup - August 21, 2012

• The kid's school year continues to go very well. Yesterday when we picked her up, her teacher said she'd been dry all day. I said, "Oh, great! So when do you think we can ditch the pull-ups?" She said, "Um, you did. You sent her without one on today..." Indeed, my husband had done that by mistake - but she ROCKED it. In fact, she stayed dry for about 24 hours. So today we tried again. And sent her with extra pants, undies, and pull-ups. I really think she can do this! Her biggest obstacle is that she can't get up and walk to the bathroom or say, clearly, that she has to go - but she can actually do both in her own way, she's physically capable of being potty trained, and she's just so damn smart... We're on our way!
• Today I believe we will be signing the final paperwork to be submitted so that she can be one step closer to getting her AAC device! She's had two therapy sessions using it now (everything up until two weeks ago was evaluation vs. actual therapy) and she is doing incredibly well with it. I just cannot wait until she can communicate more clearly with us. Her speech is getting better and better, but her frustration level is at code red -- so this is going to be excellent.
• There is an exciting new resource for vegetarians (me! lacto ovo me!) and vegans in Atlanta - the Crack the Plates Atlanta Vegan Guide! It has a listing of every vegan, vegetarian, and vegan-friendly restaurant and grocery store in the general Atlanta area. It's a work in progress, so feel free to submit suggestions (I submitted Radial - and look, it's there now! whee!). I absolutely love how veg-friendly Atlanta has become. I've eaten at or shopped at many of the places on that list, but there are so many more to explore!
• I have a new Tivo and it is ridiculous how exciting I think this is. Tivo made me an upgrade offer I couldn't refuse ($50 for Lifetime Service on the old box, free wireless adapter, multi-box discount, and Hulu Plus for 6 months) so I went for it. Plus my old box's dual-tuner functionality was messed up because of some changes to our cable service, and I missed being able to record two shows at once... If you're wondering "But Marla, how do you afford such frippery?", well, we don't pay for cable - it's part of our condo fee - so this is very worth it for us, although I am waiting for the first post-Tivo cable bill because I think we have to pay a bit extra for the new HD service we now have. ANYWAY, I caught up on Grimm, I'm now watching Community, and I just love how HD TV looks. Yes, I love TV. I admit it! I do! I am looking forward to the new TV season cranking up - in particular, I'll be watching Revenge, Once Upon a Time, How I Met Your Mother, Hart of Dixie, MAYBE Revolution, Grimm, The New Normal, American Horror Story: Asylum, and...probably whatever else my Tivo can hold. 
• Speaking of gadgets, yesterday I ordered a new cell phone. We use Virgin Mobile, so our monthly bills are really cheap. The first phone I bought was $50 on Black Friday and was totally good enough for what I needed - but of course I craved an upgrade. So I saved up every $5 Amazon gift card I earned from Swagbucks (referral link!) as well as a few GCs I earned elsewhere and some extra dollars I earned around the Internet. That plus the phone being on sale meant that I was able to buy a $200 phone for $30. HTC One V, I can't wait to get you! I also went on eBay and bought a new case and screen protector, but I'm really hoping the phone will squeeze into the jogging armband I already own.
• I'm back to running. My back has been hurting, so I haven't pushed it as much as I'd like, but I am trying to run at least 20-25 minutes a day, three days a week. My new goals is to eventually be able to run a 5K without walking at all. I am inspired by Sheryl Yvette and her ability to run 15 miles without walking. If she can do that, I can do three. I CAN. 
• I'll be introducing Kari Chapin, author of the excellent Grow Your Handmade Business (referral link!), at the Decatur Book Festival in a few weeks. VERY exciting - can't wait to meet her and hear her tips for crafters like me! Also hoping to catch Dame Darcy, Kevin Henkes, Patrick McDonnell, and Leela Corman, among many others. Wheee!
• That about sums it up, I think.

How my heart grows - June 25, 2012

I have several posts written, queued up, and ready to go, but they don't feel right (and while some are serious, there's also a contest I need to prep up and get ready and some lighthearted things) so I let them out and then I save them as drafts.

Instead, I will tell you how my heart has grown over the past few weeks.

This is definitely the summer of changes for my girl. Of course, along with leaps and milestones and inchstones come tantrums and behaviors and acting out. There are setbacks. There are problems. It's true.

BUT.

Potty training/learning/teaching/whatever is coming along very well. She has her off days, she has accidents, but she is doing so well that I think we really will be able to send her to pre-K without Pull Ups. Over the weekend, when we were at a friend's house, she didn't have any accidents, told me she needed to go every time, and just did wonderfully. Last week she even was willing to go in a public bathroom (she is usually pretty freaked out by those, though she insists on me taking her to every single bathroom in the known universe, often just so she can say "No" and we can walk back out).

We had an AAC evaluation that went so well that my whole "I don't want to get my hopes up" business went right out the window. I am VERY VERY excited about this new phase for her. She so desperately wants to communicate and talk. Tonight she talked to me steadily for about 2 solid minutes, and it sounded just like a foreign language that I'd simply never learned. It had cadence and inflection and she was very deliberate. I encouraged it, and I responded to it. And some of her words are becoming clearer (and she says "Cool!" and what I'm pretty sure - because she's said it too many times for the syllables to be random - is "I did!" when I ask her to do something/say something that she just did, whether I realized it or not). But with an AAC, she'll be able to really tell us things while we continue to work on her speech. The therapists were amazed at how quickly she figured out how to use the device, kept saying "she's so smart! she's picking it up so fast!" over and over. It made me so proud, and I choked up a bit when she started asking for her turn and their turn and more and pretty and bears and.... She's only tried out one device so far - hopefully we'll get to try another one this week or next - but I already kind of know which one I want for her, and her SLP is pushing for that one too. We'll see.

She has managed to get herself from a downward-facing dog position to standing and STAY STANDING a few times. She's gone from barely being able to even get in that position to bouncing on her hands (as her PT said she would) to getting up but then falling over immediately to STAYING PUT for a few seconds.

A plus B plus C equals amazing progress. She's always moving forward, always doing things. Sometimes, when we're alone, I forget that she has cerebral palsy for a while and she's just my girl, doing what she does. When we're with neurotypical kids, the sadness does creep in - watching her play with a four-year-old girl who runs and jumps and communicates with ease, that gets me down. But then I look at what she is doing and how quickly she is doing it and I catch myself from the fall and I celebrate instead.

She'll be five in about two weeks. Five years of this. I had no idea. But I think five is her year.