Wednesday, September 28, 2011

So Envious ...

So Envious ... by here we wander
So Envious ..., a photo by here we wander on Flickr.
Grandma and Grandpa at the lake know how to ride in style. Connor and I can't wait to go for a test drive in their new ride. He was so excited when he found out what they just bought. The twins and Josh, well they could care less. It's just a car. Oh well, at least one of my boys inherited the muscle car madness from Mommy's side of the family!

Tuesday, September 27, 2011

To Sleep .. Or Not to Sleep

To Sleep by here we wander
To Sleep, a photo by here we wander on Flickr.
The poor kid.

Sawyer has always had more trouble than any of our boys when it comes to sleeping. He hasn't napped consistently since around his second birthday, and he hasn't required more than 7 or 8 hours of sleep per night since that time either. His internal clock can be way off at times.

Last night was one of those times. He was tired late in the afternoon, laying around on the couch in the kids' playroom. Around 7:30 he finally gave it up, one foot still in the talking letters toy tote and a pillow pulled over his head (he craves pressure, always, but especially when he sleeps).

At first I was worried he might be getting sick. The weather is changing. It's that time of year. And he's at a much bigger school, with lots of different classrooms and potential germ-carriers, I mean classmates.

But no, three hours later we realized he was not getting sick. His internal clock was just off. He took a three-hour nap.

And then he was done.

Josh went to his room to get him. We let him sit on the couch with us for a few minutes, but he seemed sleepy still. I took him for one more potty break, then asked him to go back night-night with Mommy. He took my hand willingly, and let me lead him back to his dark room where we both climbed into his bed.

I stayed for half an hour. He was sleepy and full of yawns, but he just couldn't give it up. I closed him in his room, told him night-night and left to find my own bed.

Sleep didn't find him until very late this morning. He was still wide-awake around 4 a.m. when I made another pass at laying down with him to try to help him sleep. It lasted 20 minutes and I once again closed him in. He only wanted to jabber, not lie still and try to sleep. And Mommy was still sleepy.

I heard him off and on the next few hours, and we suspect he fell asleep again sometime between 6 and 7 this morning. Which made him a bear to get up at a little after 7 to get ready for school.

We put a note in his folder for his teachers. Last night I had written about keeping an eye out for signs of sickness, because this child is never tired. Unless he's off schedule. And then you're in for a rough couple of days.

I updated his folder this morning to warn them about the sleepless night. He may or may not crash on them at school, but he will be cranky. And sooner or later, he will crash. Could be at school. Could be at speech therapy after school (of course it's today of all days). Could be after we get home.

But make no mistake, the crash will come. It always does. It's a vicious cycle.

Last night was the first rough night, but it will not be the only one. It generally takes a few days to get back on track. Here's hoping it happens sooner rather than later. And that his teachers survive the day!

Getting Back in the Game (and Trying to Be Good)

No one enjoys being out of the game. That's how I've felt these last few weeks. I am not a good sick person. Ask anyone. I hate it. I am miserable, and I can make everyone around me miserable. Pain medication apparently makes it even worse. Ask my husband, he will tell you.

The good news is I have never been seriously sick before. A few colds, a case of the flu or strep once or twice, but nothing major. Stitches twice, both when I was a child. No broken bones or major injuries. Two surgeries, both c-sections because my all of my children have unusually large heads and they arrived 14 months apart (single first, twins last). I have always been healthy and active.

Until about three weeks ago.

The world came to screeching halt. I have never had even the slightest back problem before. When I made my original trip to the family doctor early this summer, it was for an odd left leg pain. My back didn't even hurt. We suspected mild sciatica that exercise and anti-inflammatory drugs could eliminate. We never imagined it would lead to surgery.

Back surgery. For a completely ruptured disk that was not only useless, it was also compressing a nerve root than ran the length of my entire left leg. Serious pain. As in no longer able to walk without tears pain. Two trips to the ER pain. Pain that strong medication like Lortab and Percocet could not even begin to touch.

It sucked.

The diagnosis and surgeryy happened so quickly I didn't really have time to worry about it until afterward. That's when I started thinking about how serious it was, about how many things could have gone incredibly, horribly wrong.

I have three children, two with special needs. I am not allowed to be sick or unwell. I am not allowed to sit out of the game.

But for two weeks I have been expected to do just that. Bed rest, with only limited breaks every few hours for a little walking. The couch or the bed have been my unwilling home these last few weeks. I have hated every waking minute of it. The sleeping ones were not much better, as getting comfortable with fresh, scabbed, two-inch incision in your lower back is kind of hard to do.

A few days ago, I took myself off the pain medication and off bed rest. My surgeon would probably not be impressed, but I didn't ask. I started slow, just getting out of the house for half an hour did a world of good. Sunday's baseball adventure was even better. But of course, it made me want more. I am tired of laying around the house, seeing all the things that need to be done and being expected not to do them. I am getting up to do things, and then going back to rest. The laptop is a good friend on the couch, and a new Nook book also helps. But I will not stay there for hours at a time any more. I simply cannot do it.

Today I am planning to help Josh with the boys at speech therapy. I will wait in the truck with two of the boys while he takes each twin in for their individual therapy. I do not think I am quite up to participating in therapy that often involves rolling around on the floor, physcially coralling five-year olds, or turns in the occupational therapy play room (think lots of swings, crash mats and sensory-seeking heaven toys).

Slowly. I am trying to be good.

We will overlook the fact that the first thing I did this morning after not being able to fall back asleep was to get up, clean the inch-layer of dust off all three ceiling fans in the living room and play room (which, of course, has been mocking me these last few weeks as I lay on the couch since I can see all three of them). I also may or may not have vaccuumed most of the house (all but the bedrooms) after said inch-layer of dust left the fans and sprinkled brilliantly all over the floors. It went well with the dog hair from the big, spoiled puppy. So really, I had no choice.

But then I took a break. Really. And the only other things on my list for today are folding the load of laundry in the dryer (will take 15 minutes, tops) and writing some thank-you notes to all of the wonderful friends and family who have helped us these last few weeks, whether helping with the boys, sending over food or gift cards for food, or just being there for us. And I can even do that one sitting down.

But I will not go back to the couch or the bed all day long. I will not take the awful pain medicine that was making me sleepy and sick and ... well, let's face it ... cranky and hateful.

Tomorrow we have another baseball game. And maybe one day this week I can convince Josh to take me out to lunch before his leave ends and he has to go back to work (he's been off the last two weeks taking care of the kiddos and the house and me). My appetite is slowly returning, though I still feel sick to my stomach when I am up on my feet for too long. And surely I will be allowed to drive again soon, especially now that I am off the of the stronger medication.

Slowly, but surely, just like I alwasys say with the boys. Nothing comes easy or quickly, but it comes just the same. I am finally starting to feel more like myself again, and that is a wonderful thing.

More of the usual programming again soon ... especially as I can get up and get back to my other hobby, playing with my camera!

Sunday, September 25, 2011

Sliding to a Close

And Another Slide by here we wander
And Another Slide, a photo by here we wander on Flickr.
Just one more week of Fall baseball. Connor will miss it terribly. He will ask every day how soon until Spring baseball starts. The twins will be thankful another season has ended (and will curse in their own language every time Connor even mentions Spring baseball).

Just two games, and the season will be done. It's hard to believe it's gone by so fast. We have very much enjoyed the new league, and have been so impressed by not only Connor's coaches, but even by the other teams' coaches. Everyone is always trying to help the players become better, to know the right way to handle every play or even the right way to stand at bat. There are no teams, everyone is out there to show everyone how to play the game. And that's something that was sorely missing from Connor's last league. We've found our new baseball home (as Connor cheers and the twins protest).

Because we have a wonderful, supportive family, Connor has not missed a game all season. Daddy and brothers have taken him. Grammy and Pappy. Grandma and Grandpa. Someone always volunteered to make sure not only Connor, but all of the boys, made it everywhere they needed to be these last few weeks. We are so thankful to have such an amazing, supportive family.

Given my recent medical problems and surgery, I have missed quite a few games. And I hate that. I took all three boys to most of the early practices and games, generally by myself. But I have missed most of the second half of the season.

Today I snuck out. I am technically supposed to be on bed rest (with limited walking every few hours) for another week. I'm also supposed to still be on pain medication. But the walls were closing in, and the pain medicine was only making me sick to my stomach (on the plus side, I'm down about 10 pounds).

Yesterday was my first day out. Josh and I snuck up the street to the local Orange Leaf for some ice cream (chocolate ice cream with white chocolate chips and fresh strawberries for me, too many different flavors for Josh to count). Grammy was at home with the boys, as both her and Pappy had come to town to help with the twins while Connor played a makeup game yesterday. Two days in a row at the baseball field - the twins were really not happy with us.

Today I decided to take my first real car ride. I am still stiff and sore. But I feel better. I just get tired really quickly. And I still feel incredibly weak (probably that whole not eating thing). But I did it.

I even surprised Connor at the dugout after the game and walked him back to the truck. His face lit up to see me back at the ball field. He reached out and wanted to hold my hand, the whole way back. He's usually too much of a big boy to do that anymore. But he did, and kept looking up at me like he couldn't believe I was really there.

That's been the hard part of all this. The pain was bad, the surgery was a little scary (as most surgeries can be). But the recovery, the sleeping all day or sitting on the couch, watching life pass you by. That's the frustrating part.

I know I have to be good. I can't rush back, do too much, too soon. But I had to get out of the house. I had to stop feeling so sick and sleepy all the time. Slowly, I have to start living life again. I have a husband I miss and three wild and crazy little boys to chase around. Daddy's going to have to go back to work again soon, and Mommy's ready to get back to being Mommy again.

Snapshot Sunday

Pure Joy by here we wander
Pure Joy, a photo by here we wander on Flickr.

Tuesday, September 20, 2011

Recovery



Surgery was not on my radar. It was not something I ever expected to happen to me. We may never know exactly what happened or what went wrong, but the end result is the same. Last week I had back surgery, and I will spend the next four to six weeks recovering. I will eventually get back to a pretty normal life, but I will always have some limitations and I will always have to be more cautious.

The situation deteriorated so rapidly that I didn't really have time to think or to worry. I was in so much pain that I couldn't tell you much of anything that happened the last few weeks. I can only tell you that when I woke up after surgery, alternately numb and sore, that the worst of the pain was gone and I felt relieved. My leg had hurt so much for so long that I worried it would never go away. But that pain was completely gone. All that was left was a little soreness, a little numbness, around the two-inch incision in my back.

And now I have lots of time. Time to think. Time to worry. I am supposed to spend these first few weeks at home simply recovering, letting my back heal from the surgery. I have some restrictions, mostly on lifting, but am generally expected to rest and do very little except walk every few hours.

I am a difficult patient, as my family will quickly tell you. I have never been good at letting others help me, even when I really need it. I am quick to want to do things on my own, and usually push too hard, too fast. I am trying, really trying, not to do that this time. I know how serious a back issue can be. I do not want to regress, or make things worse than they were before.

I am struggling to adapt to my new reality. I have an injured back, one that will heal, but that will never be as strong as it was before. The days of picking up my boys (all over 50 pounds these days) are probably long gone. The days of picking up more than one of them at a time are definitely gone. Things like bouncing on the trampoline with the boys, or water-skiing at the lake, may also be gone. Right now, it's hard to tell.

But I can tell you that I don't like sitting on the sidelines. I hate that the boys have to keep their distance, that their constant bouncing and jumping are too dangerous for me to endure in these early weeks. I hate that I have to assume a defensive posture every time they enter the room, because more often than not they reach out for a big bear hug that smacks right onto my incision scar. I hate that I cannot snuggle with them on their beds just yet, because they are too prone to flopping a leg or arm carelessly over my back and pulling me closer.

I have always been the primary caregiver. That's just who I am. I went back to work for a while after Connor was born, but after the twins came along, I have primarily been the stay-at-home parent. Josh works to provide for us, and I take care of the house and the boys.

Right now, none of that is happening. Josh took off the next two weeks from work since I'm essentially on bed rest with exercise breaks. He is taking care of the house and the boys and me. And I hate it.

Not even one week after the surgery, and I am already restless. I want to jump back down in the floor and play. But I am trying, really trying, to be good. To take the time to heal, so that I can not only get back down to the floor to play, but so that I can stay there for a really, really long time.

Saturday, September 17, 2011

On the Mend

Get Well Soon by here we wander
Get Well Soon, a photo by here we wander on Flickr.
All summer long, I have been battling a mild medical issue. Nothing serious, just more annoying than anything.

After several doctor visits, the consensus was that I was suffering from a mild case of sciatica. X-rays showed a slight narrowing in between two areas of my lower back, which could be either a disc issue or a disc and nerve issue. Either way, I was having some mild lower back pain and significant pain in my left leg.

Our initial course of treatment included exercise (mostly walking) in combination with some mild, mostly over-the-counter drugs. First it was a lot (as in eight tablets) of extra strength Tylenol on a timed schedule. When that stopped working, we moved up to a once-a-day anti-inflammatory drug.

Late last week, everything changed rapidly. All of the medication stopped being effective, and in addition to a lot of left leg pain returning, I was also losing feeling in the lower half of my left leg.

Our first call was to the family doctor, who immediately phoned in a prescription for steroids to try to get the swelling under control. No such luck.

Late Friday night, I made my first trip to the ER. I received an IV for fluids and higher-level pain medications and was sent home with orders to follow up with my doctor on Monday morning.

First thing Monday, I set up an appointment with my doctor. I could hardly walk, even with the help of a cane or crutches. I was given a prescription for even more pain medication, and an MRI and a surgery consult were scheduled for later that afternoon.

Everything led to the same conclusion - I had a ruptured disc in my lower back that was compressing on a nerve that ran the length of my left leg. Surgery was scheduled for first thing Wednesday morning.

Only I didn't quite make it that long. By Tuesday night, all of the high-level pain medication was ineffective. I couldn't walk. Or sit. Or stand. I could barely breathe without the whole left side of my body shutting down with pain.

We made another trip to the ER. I was rushed back, hooked up on an IV again, and given even stronger pain medication. I was admitted overnight, to be held for surgery in the morning.

Surgery went well. The leg pain was gone immediately after I woke up late Wednesday afternoon. I have been in and out of a drug haze the last few days, doing a lot of sleeping and a little limited walking.

My next setback was the nausea. Weak from not having an appetite for the last week and also dazed with all of the pain medications, I simply could not eat. So another phone call was made, and anti-nausea medication was also prescribed.

Today is a better day. I am up and moving. I am eating a little bit, even though nothing tastes very good just yet.

Initial recovery is one to two weeks. I will still have strict limitations on lifting and even basics like driving (not at all with pain medication). Total recovery is expected in four to six weeks.

Sigh. Just what we needed. Stay-at-home Mommy out of commission for at least a month. We are very lucky that family and friends have stepped up big the last few days and weeks to help out at home with the boys. And for that, we are once again thankful.

Not healed yet, but getting there. Day by day ...

Monday, September 12, 2011

Snapshot Sunday (Monday)

Sunrise by here we wander
Sunrise, a photo by here we wander on Flickr.
Not even one of my photos, but still a favorite. Grandma snapped this one at the lake before she and Grandpa headed up to our house early Sunday morning to help us out with the boys. It's a long story ... one I'll share soon.

Saturday, September 10, 2011

Thankful

It was just a few weeks ago, in those last few days before the new school year started, that I was here saying the same thing - how thankful I am. A few weeks have not changed that. In fact, I am even more thankful than before.

I spent most of last year worrying about the end of Early Start, of the familiar and comfortable first school our twins ever attended, and the beginning of kindergarten, of a bigger school with longer days and lots of new faces. I alternately pretended like it was not happening and stressed that it was happening much too soon.

As I have mentioned many times before, our Early Start experience was beyond wonderful. Every single person who worked with our boys was nothing short of amazing. They began as teachers, eventually became friends, and were more like family after three school years. As I told each of them in their end-of-year photo book gifts, they will always be family to us.

And that, I think, was my biggest fear.

We were so incredibly lucky in our first school experience for all of our boys. Connor did incredibly well in his private preschool. He also thrived in his magnet kindergarten program (we were a little hesitant to give it up after one year, but the twins could not have managed the open complex school setting and we could not handle another five years of two different schools on different schedules and opposite ends of town). The twins made huge strides in their three school years in public preschool. They had amazing teachers, aides and therapists who worked hard to reach them, to help them move forward and find their way. It was hard to believe we would find that magical combination again.

But we have.

The boys' new neighborhood school is absolutely amazing. Connor is doing well in first grade, loving a classroom that actually has windows this year (six, as he is quick to point out). He has made friends and is doing well with his reading and school work. He comes home happy, and excited about what he's been doing.

And the twins ... where do I start? After a bumpy first day (mostly a new car line procedure), they have done amazingly well. There a few bad moments here and there, but overall they are doing better than I could have expected this soon into the new year. And their new team is equally incredible. I get constant information and feedback about their progress. Their teachers and aides walk them out of school every afternoon, offering a report of their day, sharing any breakthroughs and talking through any obstacles. If there are challenges or concerns throughout the day, I get instant emails and phone calls. They are always open to advice, willing to work with the boys' unique needs, and have gone out of their way to be friendly and helpful and inclusive in this new school setting.

Just one day last week, we had a scheduling issue when Josh and I both needed to be at work early. Sawyer's resource teacher, Ms. K, graciously agreed to come into school a little early to receive the boys, knowing they would not be able to independently handle the gym that the school keeps open for other early arrivals. Xander's aide, Mrs. G, also was there, helping him navigate the gym that morning. It's just one example of the many ways they go out of their way to help our boys in this new transition.

As it turns out, my biggest fear has proven unfounded. Our first team was great and set the bar incredibly high. The fact that the next team is living up to and exceeding those unrealistic expectations is even more incredible. I am so thankful to all of them - the Early Start team who got us to where we are and continues to help in the boys' transition as well as the kindergarten team who continues to impress us with their dedication and efforts to work with the boys in this very big transition to help them be successful.

And I suppose I should have worried less. I read and hear a lot of horror stories about school districts and schools that are not helping so many children like our boys, with struggles and individual needs that have to be addressed. But our school district has been nothing but supportive and amazing. From the district and school facilitators, to the teachers and aides, the countless therapists, the principals and even the general staff. We have been met by nothing but amazing people who welcome our boys with open arms and try their best to help them navigate their school days.

Just a week or so ago, I sent a thank-you email to the district-wide autism specialist. Despite the sheer number of kids that she must oversee and monitor, she has always been a prominent member of our team. From showing up at IEP meetings to randomly showing up at their school to monitor the boys during their day, she is always there, offering suggestions and recommendations, offering her experience and expertise to help our boys find their way. Early into this school year, our new team was worried about the amount of time Sawyer was able to stay in the traditional classroom versus what his IEP requires, and she came out to spend the day with him, making suggestions and recommendations, before calling another ARC meeting. She is another constant advocate, always looking for the best solution that helps our boys reach their full potential.

Autism is not always an easy journey. It is often a lonely one. Our path changed, when so many of our friends are still going on that happily normal path. We have a path that includes therapy, special education, paraprofessionals in school, IEP and ARC meetings, and so many non-traditional things. If that's not your world, it's hard to relate to it. But it's our world. And to have people walking that road with you, understanding those unique challenges and so willingly going out of their way to help you and your children navigate them, makes the journey so much easier.

Our school teams have been an amazingly supportive part of our journey. The boys are, and always have been, in good and loving hands. And it makes me incredibly thankful.

What Do You See?

Let's Go, Lady by here we wander
Let's Go, Lady, a photo by here we wander on Flickr.
This photo is incredible for so many reasons. It stood out to me the first moment that I saw it on my computer as I was uploading it to our photo site.

This is Sawyer. He is looking at me. He is engaging me. He is communicating (albeit non-verbally) with me.

In effect, he is saying, "Hey, Lady, get up and come push me on the swings!"

You might not know that. And perhaps I wouldn't either, except he had already been in the pool and on the trampoline, and the swings were his next logical step. If I was uncertain, then him leading me to his favorite swing and sitting down was confirmation enough.

But let's look beyond the fact that he was requesting help. He has done that for quite some time. He is a master of pushing and pulling and pointing to get his needs and wants addressed. I rarely have trouble understanding what he wants. Most others don't either.

And he is, in fact, incredibly talented at picking the best person in the room he can most easily manipulate to get his desired item. He knows which one will most easily bend to his will, a particularly unusual skill for many with autism, or so I am told by the professionals, but one both my boys have mastered just the same. They read people, enough to know which ones will be likely to cooperate and which ones are more inclined to refuse (at which point persistence comes into play, and both are very good at that as well).

But I digress.

Back to the photo. To my boy, who is looking at me with his big brown eyes. Who is not flinching from my return gaze or even the snap of the camera. Who is engaging me on his own. Who wants not only my help, but also my company. Because once we make it to the swings, he wants me to stay. Not to push. No, he is content to rise and fall, twist and turn, all on his own. He just wants me there. With him.

And I have to tell you, I would stay all day long. For those brown eyes to look at me. For that child to want my presence as much as my help. Yes, I would stay all day.

Wednesday, September 7, 2011

Hard at Work


Xander has always loved markers (or anything art-related for that matter). Here is the little lefty, hard at work at school. (Special thanks to Mrs. G for sharing the photo).

Tuesday, September 6, 2011

Snapshot Sunday (Tuesday)

Sweet Boy by here we wander
Sweet Boy, a photo by here we wander on Flickr.
My favorite from last week. A few too many shadows, but love that he paused from his jumping to look at the camera, and also love the faded background (all natural, without editing).

Saturday, September 3, 2011

More Cousins

Splashing by here we wander
Splashing, a photo by here we wander on Flickr.
This is apparently the week of cousins in our world.

Earlier this week we went to a young cousin's first birthday, and today we spent the day with lots of cousins (and lots of other family members) at the big family reunion on Daddy's side of the family. It happens every year on Labor Day weekend, and usually averages about a 100 people.

Connor was particularly excited about this day, as it meant he got to play with his distant cousin and good friend from his old school(s) - Cousin J. He also got to play with Cousin J's slightly older brother P, and another favorite cousin, Miss R. Cousin P is in second grade, but the rest are all first-graders this year. They had a big time playing together.

This was also the year of the creek. It was hot in our part of the world today (as in heat advisory for the first time in weeks hot). So the kiddos quickly abandoned the hot shelter (where the picnic lunch was held), bypassed the sunny playground, and headed for the shady creek below the bridge.

And that's where we spent the better part of the day. Splashing. Playing in mud. Building dams. Tossing rocks and sticks and leaves into the water.

Just being kids.

Xander and Sawyer did some rock and leaf tossing. They did a little less splashing and no playing in the mud. But they had a good time, too.

A hot day, but a good one. These are the moments we hope the kids remember. Visiting with extended family. Fun afternoons getting wet and dirty in the creek. Friends who just happen to be cousins, too.

Happy First Birthday

Cuteness by here we wander
Cuteness, a photo by here we wander on Flickr.
Cousin Xavier turned one last week. And in just another short month, he will become a big brother. Hopefully, he will think that's a better gift than Connor did back in the day.

It's fun to watch our very good cousins Katie and Josh with their very own family. They are the cousins who so wonderfully, selflessly came to our house once a week during their long, hard college nursing years to watch our boys and give Josh and I a night out. They are truly wonderful people, and we love them. They also are amazing parents. With an amazing little boy (soon to be two amazing little boys).

Happy first birthday, Xavier!