Catching Up

I just logged into Blogger for the first time in awhile, and realized it's been a month since I've written anything. It's both disappointing and also indicative of where we are right now.The last month has been so busy, it feels like we're just barely staying afloat sometimes.

The highlights:

School is still going well for the dynamic duo. They're both readers now, although we are still working on the whole comprehension thing with the boy. He *JUST* got the concept of setting, so we are making baby steps. Amelia, on the other hand, has mastered somewhere between 50-75 sight words and is really coming along. Anderson is absolutely FASCINATED by numbers right now. He loves to count things, loves to talk about different ways to make certain numbers. He can count well past 100 and can complete a hundreds chart. He's still working on the whole independent work thing.

Amelia got tubes in her ears last week. It was no big deal at all--I guess because we've dealt with hernia surgeries and heart surgery; this just didn't seem major. She was a trouper, and the ENT was pretty awesome. At her pre-op appointment, he talked to her about Frozen and told her she could wear her Ana costume to the procedure. Naturally, she was more than happy to oblige. She didn't even cry when they took her back, and about ten minutes later, they were calling us back for consultation.  She had pretty significant fluid in her tiny ears--no ear infections, but just standing fluid. The doctor told us that she should regain 15-20 decibels of hearing over the next few weeks and months. Crazy that it had gotten that bad.  She woke up angry as hell, which was no surprise to me, and we were on our way in about 20 minutes.  An hour later, it was like nothing had happened.  The ENT made a slightly surprising/shocking suggestion--he wanted us to take her to a pediatric pulmonologist and have her tested for Cystic Fibrosis.  I talked to our regular pediatrician about it, and he was as skeptical as I was, but we both agreed that since it was out there now, we should follow through and have it done.  She's scheduled for the CF sweat test on December 18th.

Anderson and I continue with swimming lessons...yes, you read that right. I'm taking lessons, too. Every time I take Anderson to lessons, I find myself staring at the people who are swimming laps, jealous. I've had back issues for years and all of my doctors recommend swimming. I'm a decent swimmer, but I have one huge problem--I can't (or I should say I couldn't) breathe while swimming. A few lessons later and I'm getting  better at that, but I still have issues. Actually, quite comically, one of my phobias is coming into play in terms of me being able to actually swim the length of the pool. I kind of have a version of megalophobia, which is the fear of large objects. Especially large transportation vehicles. I don't like being next to cruise ships, airplanes, etc.  I absolutely cannot STAND propellers--the ship-sinking scene in Titanic is horrible.  I know--totally irrational. Anyway, as part of that whole issue, I cannot STAND to look at empty swimming pools. Seriously. Like I just googled "fear of empty swimming pools", and images came up--and I had to turn my head. So...when I start off on the shallow end, I do fine. But, because I'm wearing goggles and can see under water clearly, I see when that steep drop-off is coming up and I freeze up. I put my feet down immediately. I know--so weird. I am absolutely not afraid of deep water. As a kid, I had no problem jumping off the diving board and touching the bottom, and I would gladly do it now, without goggles. But if I can see what the pool looks like, that steep hill that leads to the deep part and looks like an empty swimming pool...creeps. me. out.  So, I've got some work to do. :-) I'm quietly working towards a fitness goal that I refuse to make public until I commit, but so far, so good. Lots of working out going on, and it feels really, really great.

That's all around here. Passing time until winter break, when we can all breathe a little. More to come...as soon as I can work up the nerve to click the box next to the "fear of empty swimming pools" so I can log off. :-)

Letting Go

When your child is initially diagnosed with ASD, one of the most difficult issues that you deal with is letting go of expectations. Expectations of parenting through the "typical" childhood experiences and issues. Dads who dream of future athletes, moms who dream of dancers and make-up and shopping...the fantasies that enchant and bewitch us when we find that we are about to become parents.

When Anderson was about two years old--when I knew that he was on the spectrum and nobody else did--I started the process of grieving these expectations. Anyone will tell you that the first part of this experience is the denial. For me, it wasn't so much denial as trying to force Anderson to be "normal". This included pleading with him to stop flapping his hands, endless modeling of how to correctly play with toy cars, begging him to pay attention to things that typical kids notice and enjoy. I remember taking the kids to a birthday party at an inflatables playspace and fighting back tears as he cried, screamed, kicked, and eventually settled into a routine of pacing around the bounce houses over and over.  The noise of the fans and the size of the inflatables was just too much for him. I watched Amelia and the rest of the party-goers enjoying themselves and the hole that had just begun to form in my heart--way down deep in the most tender space that is reserved for your children--grew larger. More painful. My boy wasn't going to enjoy the typical childhood activities. It hurt.

Since that time, we've experienced similar issues with places like swimming pools, concert halls, and (of course) elevators.  Over time, the feeling of hurt and, unfortunately but admittedly, disappointment have faded. But not only have they disappeared, they've been replaced with something different. A realization that is so powerful and important that I wish all parents could experience it.  When we go through something like an ASD diagnosis, we feel that because our children don't enjoy typical childhood things, they won't experience the true, unadulterated joy that comes with being a kid. That carefree uninhibited feeling that dissipates as we near adulthood and never returns.  The reality is (at least in my case), Anderson probably experiences the world in a MORE carefree and uninhibited way than most children.  He is completely unaware of others' expectations of him and therefore their opinions of him. He experiences TRUE joy in things like just being outside, pretending to do yard work, or hiking, or watching elevators. He wears his heart and emotions on his sleeve, and therefore his excitement over things that he loves is literally almost tangible. In a nutshell, he is who he is. What you see is what you get. And what you get is pretty damn awesome.

On Tuesday, I decided to take the kids on a spur-of-the-moment trip to the zoo. Just us three. We went to the Louisville Zoo because the drive is shorter and the zoo is smaller and manageable.  We got there right as the gates opened, and the day couldn't have been more perfect. Cool temperatures and overcast skies kept crowds away, and we experienced the zoo without having to wait or deal with herds of people.  Amelia is an animal-lover in the truest sense of the word--she can't stand babies or Barbies or princesses, but show her a Florida Panther and she gets all googly-eyed. She and I spent hours that day staring at lions and giraffes, elephants and gorillas and tigers.  Anderson spent hours that day walking the grounds of the zoo. He maybe actually looked at three animals the entire day, and spent the rest of his time climbing and walking rock walls, pacing back and forth in front of fences. He had free rein of the area because without a crowd, he could get a good distance away from me and I could still see him and not worry about someone trying to grab him.  I couldn't help but think back to my earlier self--the one who worried and dreaded and panicked in the earliest days of his development. That Wendy would've spent the entire day trying to force him to LOOK at the animals, persuading him to not pace in front of the fences and begging him to pay attention. I would've been so incredibly disappointed that he wasn't enjoying the animals that I would've missed how happy he was just to be outside, to be in a new environment full of fun obstacles for climbing.  On this zoo day, I felt nothing but peace and happiness, and honestly? I was proud. Proud of how far I have come, how far we have come.

The boy continues to make progress every single day. He's actually READING now with freakish accuracy. He can count past 100 and loves school. He's learning more and more how to tell us what is bothering him when he's unhappy, to use language appropriately.  In five weeks' time, he has gone from crying at the thought of getting into the pool with a swim teacher to begging him to take him out into the deeper part of the pool on a float and smiling throughout the entire lesson. The boy conquers his fears and issues on a daily basis. He's pretty amazing. I can't wait to see what the next year brings.

Conundrum

I need advice. Preferably not theoretical advice, but legitimate, "what would you do" kind of advice.

I feel like up until this point, I've done pretty decent with this whole parenting thing. My kids are good people; they're respectful and well-behaved and follow directions pretty well in public. They eat a wide variety of vegetables and other foods, they don't ask for much in the way of toys. I figure that combination kind of means I'm doing something right, at least some of the time.

But as with all kids, as they get older, they go through phases and things change.  Right now, Anderson is going through some...social changes.  He's done a complete 180; he's gone from not really wanting to engage strangers in conversations to talking their ears off. Now...please don't misunderstand. I'm glad he wants to talk to people, and that he's able to talk to communicate and all of that. But, it can be a bit...awkward. And I don't know what to do about it.

Case in point: our weekly mall excursion.  Yesterday, we went to the mall to do our chickensticks/elevator/escalator/Hollister combo. I've posted about it before, but Anderson loves to watch elevator videos. He has a favorite guy that we watch--interestingly enough, he's also on the spectrum. Like a lot of ASD kids, he watches the same videos over and over and he "echoes" them when he's playing elevators. Including when we are in public. At the mall. On busy weekends.  Saturday, we were waiting to ride the Macy's elevator.  Of course, as soon as we get there, five other people get in line to ride, too. We all get on what is one of the world's slowest elevators, and Anderson starts being Dieselducy.  He's saying all kinds of what can only be described as jibberish to the non-elevator educated.  Talking about fixtures and indicators and Dovers, pointing to things. The kids on the elevator look at Anderson, then at their mom, who is smiling but clearly befuddled. I let the family off first, and we follow--and I see the oldest girl in the family ask her mom what Anderson was doing. She wasn't rude; she was completely curious, and I don't blame her. It's definitely not something you see every day.

So this is where my question comes in. What would do you do? I am COMPLETELY comfortable with Anderson and his quirks, but I want everyone around us to be comfortable, too. In instances like those, do I tell people that he's on the spectrum--do I explain that he's imitating his favorite elevator videographer? Do I do what I've done up until this point and say nothing? Like I said, it doesn't bother ME, but I kind of feel this need for other people to "get it"--get what he's doing. I don't know...just something I've been thinking about. What would you do?

Do I?

Anderson has been in speech therapy for four years now.  During that time, he has made tremendous progress with communication. We went from goals like "using multi-word phrases", to "speaking in sentences of five or more words", to "initiating conversation" to "answering w questions".  You mention the word "autism", and most people's first thought is non-verbal, or slightly verbal.  They're taken aback by Anderson, because he is definitely very, very verbal.  In fact he doesn't really stop talking, which is problematic during things like, oh, SCHOOL.  Or homework. Or trying to get to sleep. Or when you have a raging headache. Or after you've listened to it non-stop for two hours. You get the idea.

There are times, however, when his delay is evident. If you spend more than a few hours with him, it definitely rears its head. When he is frustrated, or when he needs something that requires more explanation than a simple sentence, it becomes obvious.  He is still echoing times when he has been in trouble--or now when someone else has been in trouble--if he feels like he has done something "bad", whether he has actually been naughty or not.  He echoes his current teacher, who says things like "I am very disappointed that you made a bad choice", or "You are disobeying me". Although I'm glad that he has an outlet for his feelings and emotions, it still hurts my mama heart that he can't just say "my feelings are really hurt", or, as Amelia loves to tell me, "I'm super angry right now!" (but that's another post altogether). I just wish things were easier for him sometimes.

Another area where he still has some work to do is his tendency to talk in questions.  He doesn't do it all of the time, but it still happens. I have to confess this...it's really endearing. It's one of those little things I know that I'll miss, when he stops.  One of my favorite ways that he does this is that he asks you the question that he wants YOU to ask HIM. So, instead of saying "I'm hungry!", he might say "Mom, am I hungry?"  I'll of course ask him if he's hungry, and he says yes. Another popular one is "Do I want to play outside?"  Again--the answer is yes.

A few weeks ago, the kids were in a wedding.  It was a very long day for them, and they did an AMAZING job (and it didn't hurt that the bride thought of everything in terms of thinking of how to keep the kids entertained, and I mean everything!!).  Anderson has really come out of his shell in terms of warming up to people he doesn't know, and he loved the attention he got that day--and believe me, he commanded attention in many ways.  During the reception, after rocking the dance floor, eating cake and cookies and all kinds of other goodies, and running around opening and closing doors for the wait-staff (yes, that happened), he sat at the table, long after his bedtime, with sleepy eyes. He was in the kind of daze that can only be caused by hard play and sugar. He looked right at me and said, with the most contented smile, "Mom? Did I have so much fun at the wedding?" I kissed his sweet, sweaty head and told him yes, he'd had a very good time at the wedding.

This afternoon, as we were riding home from school, he was telling me that he plans to play "Meadowthorpe" (the name of his school) when he goes to Nana and Papaw's this weekend.  Then, he thought for a minute and said, "Do I like elementary school?" Yes--the boy is in love with school. Something I most definitely did not expect, but I'm thrilled with, of course.  And then, after we got home and I was helping him out of the van, he looked at me and said "Mommy? Do I miss you?" And then, he hugged me.  He hugged me and put his head on my shoulder for a good five seconds. All without me begging, or grabbing him and forcing it. He hugged me, and he loves me, and he misses me when he is not with me. Sure, he can't say those things, but he said it all today. It's something I will remember forever.


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My Public Service Announcement
I can't say enough about early intervention--if you're a new mama/mama to a toddler and you suspect your child may have a speech delay or any other kind of delay, I urge you to seek an evaluation through your area's early intervention service provider. Early intervention is KEY.

Getting Schooled

So the kids have been in school for between five and six weeks, but technically less with days off, holidays, etc. I am telling you...I am in AWE of the academic progress they have made in that short amount of time. Blown away.

Anderson...he knows all of his letters and their sounds, as well as how to write them correctly. His memory is a gift; he can remember most anything for an unlimited amount of time.  His teachers use a verbal path for letter-writing, meaning that they say the exact same thing every time they write a letter. For example, when they write a capital M, they say " straight down, slant down, slant up, straight down".  He has them ALL memorized. His handwriting isn't half bad, either.  He can write letters on command, meaning if I tell him how to spell them, he can write words. He loves practicing his writing and pretending to be his teacher. He does read-alouds at home, which consist of him questioning his "class" and reprimanding them when they talk while he is talking. He loves to talk about "disrespect" and "disobeying", and getting "oops notes" when someone is bad. He can also write and identify his numbers through 10 (something he could NOT do before school, for sure), and knows how to put two single-digit quantities together to make a bigger number, like two and three make five. He knows words like characters and illustrator, and states on a daily basis that "Mr. Katte's office is no place for me!" (the principal...). All in all, it's fair to say that he is really, really enjoying school. I am absolutely amazed at how he has handled the transition, and how much he is enjoying learning.  I do have to say, though, that as I anticipated, anything that requires work beyond literal or memorized skills is difficult for him.  Part of their homework each night is that we have to read together, and log our books on their reading logs.  Being the teacher mom that I am, I of course am not just going to read; I am going to ask all of the many types of comprehension questions.  Here is a snippet of my questioning of Anderson two nights ago:

Me (reading aloud): "The big boat said, 'Thanks, Joe!'  Anderson, what did the big boat say?"
Anderson:  "Uhhhhh...he said he wanted to float?"
Me (reading aloud again): "Listen...The big boat said, 'Thanks, Joe!'  What did the big boat say?"
Anderson:  Uhhh...he said he wanted to go home?"
Me (reading louder): "LISTEN...The big boat SAID,'THANKS, JOE!' WHAT did the big boat say?"
Anderson: "Thanks???"

Shew. We have some work to do, there.  Good thing I'm professionally trained. :-)

Amelia has also learned so much.  She already knew letters and sounds and numbers and all that jazz, but she's learned quite a few sight words and lots of content information. The other day, I asked her if she did reading groups. You know, because I'm nosy about what other schools do in kindergarten.  Her response surprised me; she said, "Yep! Sure do! I go to journal, then Mrs. Smith, then phonics, then ABCs, then Ms. Lundgren!"  She has her group/center rotation memorized already!  So, I asked her what she wrote in her journal. She proudly said, "My opinion!" I was totally blown away. As stupid as it is, because I work with the standards pretty much every single day and have most of them at least partially memorized, I never thought about MY kids learning the standards.  You Fayette County people following the pacing guides for ELA standards know that the first writing piece is an opinion piece. I couldn't believe it. Not only did she know what an opinion was, she was able to tell me about what she wrote. I cannot believe my daughter is WRITING.

So, all in all, school has just gone so much better than expected.  I'm thrilled.  Coming up next in our lives: Anderson starts private swim lessons. That's going to be interesting.

Next post will be all about the wedding that the kids were in this past weekend. It was a whirlwind of a few days, but it was unbelieveable. They did great and we all had a truly fabulous time. Can't wait to share.

Kindergarten Comedy

I've known for years that kindergartners are funny little people. I love going into our K classrooms and just talking to the kids because they say some hilarious stuff (sidenote: I love kindergartners. I could never teach kindergarten.  I do not have the patience, and those teachers are saints). My own K babies are no exception to this rule. We've had some pretty funny conversations around here since the dynamic duo started their educational career.  A few highlights:

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The kids are supposed to listen to reading every night as part of homework.  I don't know about you all, but we honestly don't have time for me to read two different stories to two kindergartners. So, while they have their bedtime snack after showers, I read out loud to them.  They weren't keen on this at first, but it's grown on them. Amelia has always been a good listener and can answer questions, make predictions, all of that good stuff.  Anderson...well...he has the attention span of a flea, and that's putting it mildly.  That first night, he kept trying to talk to me about all things non-related to the book.  As often happens with teacher moms, I was getting very frustrated. We had the following exchange:

Anderson:  Mom, I played outside today...
Me:  Anderson--I'm reading. Listen to the book.
Anderson:  Can I have a sandwich for lunch?
Me:  LISTEN to the story!
Anderson:  You know what mom? I can't take showers when my nose is runny....
Me:  ANDERSON!!! STOP TALKING!!
Anderson:  Mom...
Me (loudly and with the correct hand gesture--and you know what I mean): ZIP IT!!!!!!  ZIP!!!! IT!!!!!!
I continue reading.  Anderson doesn't talk, but I can see him gesturing wildly out of the corner of my eye, trying to get my attention. I ignore. He continues. I finally look at him.
Me: WHAT??????
Anderson (whispering and pointing to his mouth): But I don't have a zipper....

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Upon getting in the van each day, Amelia doesn't want to talk about what she learned at school that day. She wants to tell me all about who got in trouble. As a nosy concerned parent, I'm all for this kind of dishing.  It may not be a stretch to even say that maybe I ask her about it now. Anyway, last week she got in the van and here was our conversation:

Amelia:  I'm sad...my friend Hannah just got in trouble.
Me:  What did she get in trouble for?
Amelia: She hit my brother...she had to sit in time out.
Me (foolishly thinking she might be upset for this injustice thrust upon her brother):  Ohhh...are you sad that your brother was hit, or are you sad because she got in trouble??
Amelia:  I'm sad she got in trouble!
Me:  Well, why did she hit Anderson?
Amelia:  Well...I said to her, "Get him!!!", and she did.
Me:  Ummm....well...did you play with her after she got out of time out?
Amelia;  No. She didn't want to play with me after that.

Can't say I blame Hannah. My girl is already hiring hitmen.

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Anderson, naturally, has speech.  His speech pathologist is wonderful and was kind enough to email me something Anderson said during his first official speech session. He attends speech with another student, and apparently this little guy is quite...loquacious.  He tends to try to dominate the conversation.  Anyway, here's what happened:

Anderson (to Speech Pathologist, hereby known as SP):  I want to tell you about showers...
Other kid:  Blah blah blah blahblahblahblah....
Anderson: HEY! I was trying to tell...(he looks at the SP)...um, what's your name?
SP:  Mrs. H...
Anderson:  I was trying to tell Mrs. H about something!!!!!

She was impressed with his speech that day, I can tell you. He's already cracking everyone up.

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I know there are more funnies that I can't even remember in my overtired state.  We've already had our first funk-of-the-year; Anderson threw up at school yesterday and ran a fever all night.  His teacher texted to ask about him and let me know he was the first to "christen" her classroom this year (aka puke all over the place). Proud mom here, I'll tell ya. He also managed to puke all over my couch, something I had been able to avoid for FIVE YEARS. That was a hell of a streak. Anyway, I'm tired and staring at Amelia like the ticking time bomb that she is. Yay, kindergarten germs!

Happy 2nd ARDSiversary

This week marks the two year anniversary of Marty's near-death ARDS experience.  In some ways it seems like a lifetime ago, and in others it feels like it was just yesterday. I've been both dreading and anticipating it this year because I have the TimeHop app on my phone, and I knew it would bring up my Facebook updates from that time in our history. I'm sure it sounds a little bit crazy, but it's something I never want to forget. The raw emotions of the whole experience are an important fingerprint on my life. It changed me forever, helped me not to take things for granted, so as painful as it is, I need to remember it.

TimeHop is not disappointing me:

That particular day was the absolute worst of my whole life. It's a blur of sitting in the ICU waiting room, doctors and nurses updating me periodically with numbers I didn't understand.  The part of the day I remember most vividly is actually that night. Marty was too unstable for me to comfortably go home.  I slept at the hospital that night, my mother-in-law and sister with me in the waiting room with the lights that wouldn't turn off, much less dim. Everyone finally fell into restless sleep around midnight--everyone except me. I lay there in that uncomfortable chair covered in hospital linens that have that bleached-out, sterile smell that you only find in hospitals. I laid there and I cried. I cried more than I've ever cried in my entire life. Every single time I closed my eyes, all I could picture was my children without their father. Me telling them that he was gone.  Their reactions. It absolutely shattered me. It was the kind of grief that you only experience a few times in your life. The kind that changes you.

These days, things are pretty good.  During Marty's last hospitalization, we discovered that he has significant sleep apnea, most likely caused by the brain tumor he had in his 20s. Since then, he has used a C-PAP machine, which has both helped his apnea issues and his drainage/aspiration issues. Having the constant blast of air has really kept his lungs drier, for lack of a better word.  He had a cold this past week, and for the first time in YEARS--and I mean YEARS--he didn't wake up one morning with lung crackles and rattling. His chest stayed completely clear. Between sleeping in a recliner that keeps him at an upright angle and using the C-PAP, we are figuring out how to keep him healthier.

So, in a time when things are completely hectic--both kids are getting used to school and the boy is still struggling with PE, work is busy for both of us and some days are just plain hard--those are the things that make me grateful.  Grateful that things worked out, despite how grim they seemed on the date of the picture posted above. Even on the craziest days, I'll never take our insane lives for granted.

(If you're interested in reading more about ARDS, including stories of people just like Marty, visit the ARDS Foundation here. )