Tuesday, September 29, 2009

Poop Happens

This past weekend I went to the best baby shower ever - everyone got neck massages and enjoyed a chocolate fountain while swapping parenting battle stories. The topic of discussion when I arrived was "your worst mommy moment" and I quickly discovered that these stories fell into one of four categories: 1) children falling off highchairs or down stairs 2)irrationally yelling at your child to be quiet/go to sleep 3) children eating things they shouldn't have been eating and 4) children pooping in places they shouldn't have been pooping.

My story fell into the last category and was gruesome enough to win me a door prize. I haven't shared it here because of its gag factor, but the multitude of poop stories that night inspired me to put it in writing. (If nothing else, my mom will print it and put it in my memory book so I can use it against my children later in life.)

Still, to be fair, if you are faint of heart or weak of stomach, do not press on.

My tale begins on an average day...Fionn was upstairs taking his daily micro nap and Emerson was downstairs eating a snack. I heard Fionn start to wake up and move around, so I went up to get him - leaving Emerson plaintively wailing for more food. By the time I got upstairs, Fionn was already happily playing on the floor, so I assessed the situation: baby-proof room, happy baby, crying toddler. I figured he would be fine for five more minutes while I finished up with Emerson. What could happen?

Famous last words of parents everywhere.

Literally five minutes later, I went upstairs to retrieve the baby. I got about half way up the stairs when the unmistakable stench of poop nearly knocked me over.

Dear lord...he pooped in his diaper and stuck his hands in it! I thought and made a terror-stricken dash for the bedroom.

Ha - if only it had been that bad.

The first thing I saw was a clean diaper laying in the middle of the floor. Insanely, I breathed a sigh of relief.

The next thing I saw was Fionn playing on the floor near the door. From my perspective, he didn't look dirty, so I breathed another sigh of relief. Then I bent down to pick him up and saw it - poop on his cheeks, in his hair, in his ears, up his nose. I didn't dare smell his breath.

I was like a crime scene investigator....everything was blocked out except the details right in front of me. Slowly, I retraced the evidence. There was a light streak of brown on the floor that got increasingly darker until, all the way across the room, was the jackpot. It was then that the story of what had unfolded became clear.

In the five minutes he was alone, he had taken off his diaper, then pooped, then fingerpainted in it, then proceeded to crawl across the entire room, touching every bucket of toys that lined the wall along the way. He even stopped and opened a few bins up, touching several toys inside. Somewhere halfway through this adventure he stopped to pee, then he finally came to a rest near the door where he spit up. And that's where I found him.

The situation was so awful I had no idea where to even begin. The smell was outrageous and of course we have rustic pine floors full of cracks...cracks now filled with poop.

When I finally regained my composure, I threw Fionn into the tub and gave him a solid scrubbing. Then I called Robbie at work.

"I need you to come home....now."

When I explained what had happened, I heard cackling on the other end of the line. I, however, was far from laughing. Robbie thankfully was able to come home and help watch the boys while I scraped, scrubbed and disinfected everything for nearly two hours. He thought it was hysterical - until he came into the room to check on me and nearly passed out from the sight and smell of it!

Needless to say, I learned a very important lesson that day. Fionn is NOT the kind of kid you can leave alone...not even for five minutes. He is the kind of child that grabs everything within arms length and throws it to the floor within 30 seconds of sitting down at a table. He wriggles out of seat belts and safety belts of all varieties. He eats everything he can fit into his mouth. Yesterday, I could not keep him in the grocery cart, so I had to carry him upside down through the rest of the shopping trip while he giggled maniacally and tried to grab everything off the shelves. In short, we are in serious trouble with this kid. Serious.

Speaking of which, I now hear him making his way back to the dog's water bowl. Wish me luck....

Monday, September 21, 2009

Answer Me!

I know I've been MIA, but there has been some good news among the frantic chaos that is our life. We finally have two more pieces to add to the ever-changing puzzle that is Emerson Porter.

Emerson with post-nap hair

First, I had an illuminating meeting with his occupational therapist. At the end of last year she handed me a thick packet and instructed me to fill out Emerson's daily activities, along with any related problems. I have to tell you, detailing all my frustrations and struggles was one of the most cathartic experiences I've ever had!

When I handed the completed packet back to her a few days later, she thumbed through a few pages and said wryly, "You guys are having fun, aren't you?"

I snorted. "Yeah."

She promised to get back to me with suggestions, but between summer break and some family issues she was facing, I didn't hear anything until the end of August. In the meantime, the process of writing down all our problems had given me an idea to do a picture schedule. (I'll write a separate post about what that means later, along with posting some pictures.) But when the OT called me, her suggestion was...you guessed it...a picture schedule! For once I was actually an on-the-ball parent!

This was not the good news, however - that came when she offered to meet with me to see what I had done and offer advice. Unlike some of his other therapists, the OT is more blunt and straightforward, which I appreciate under the circumstances. One of the first things she said was, "Emerson is not an easy kid. I hope that makes you feel better."

I laughed, "Yes, it does!"

I appreciate it when people try to make me feel better by pointing out how cute and sweet and fun Emerson is, but it's also nice to have my frustrations validated once in a while. It's nice to hear someone say, "I get it. I get that some days you want to scream, pull your hair out, or take a Greyhound to Alaska so you can start your life over again as a truckstop waitress named Marge."

She offered me a wealth of advice, from picky eating issues to social situations to making his new-found interest in tv an asset rather than a guilty indulgence. Most importantly, she confirmed that his sensory issues are related to his poor vision and not a whole new diagnosis of sensory processing disorder. I also asked about autism since no one has given me a straight answer so far. Frankly it hasn't been a huge concern of mine lately, but I wanted to know her opinion since she is on the autism diagnostic team.

She was taken aback that I asked and that the other therapists hadn't told her I was concerned about this. (Had I known sooner that she was on the diagnostic team, I would have gone to her first!) She told me an unequivocal no - he does not have autism! FINALLY someone gave me a real answer, even if it was just eliminating one of many possibilities.

This meeting made me realize something else - I need to start bringing tape recorders to document these kinds of conversations. She told me a lot of information about why she doesn't believe he has autism, but I can't recount it now because I was too busy trying to appear as if I wasn't choking back tears. And it didn't matter because halfway through her speech she started wiping her eyes and saying, "You're making me cry too!"

I'm such a freakin' baby.

The second bit of good news (is anyone still out there reading this novella? Hello? Oh well.) I took Emerson to his speech evaluation at UM hospital. They only offered me one time - right in the middle of nap time of course - but I suppose it's better to show his worst side during an eval anyway. Despite not being at his best, the therapist did not think he has Apraxia, although she cautioned she can't rule it out until he can say more words so she hear how he pronounces them. She did diagnose him with a slight receptive language disorder (ability to understand language - he was actually within the normal range, but she wanted to give him that diagnosis so that she could include some receptive language goals) and definitely an expressive language disorder. She explained that they have to call it a disorder for medical billing purposes, but her sense was that it was actually a delay - meaning he will catch up in time. Yay!

She gave me some diagnosis codes and advice on how to deal with the insurance company, which helped me to finally get the answer I was hoping for. They do in fact cover that facility, so we are on the waiting list to start services. The evaluator told me the school early intervention would be enough therapy if insurance didn't cover the hospital, which was nice to know. But since it's covered, I want to make sure we get all the extra help we can! Now I just have to figure out how to negotiate that damned hospital parking lot on a weekly basis...(does anyone else think it's insane that hospitals now have valet parking? Even for patients?)

So that's all the news that's fit to ramble about at our house. The boys have hit several milestones this past week as well, but I'll write about that later. For now, here are some more random pics:

Life at our house includes a lot of wrestling.

Fionn prefaces his attacks with a shrill battle cry.

Can you see my joy at being an oasis of estrogen in a sea of testosterone?

Monday, September 14, 2009

See You in September

Well, Fall has undeniably begun...school for the boys starts tomorrow and mine has already started (although I've been pretending it hasn't so I can get more done on the house). The noise of neighborhood kids playing first thing in the morning has been replaced by the frantic shouts of parents as cars idle, last night's homework is collected and book bags are slung across reluctant shoulders. And the most cliche but romantic sign of all - the trees are starting to blush pinks and golds and even the occasional deep reds.

The other day I decided to take advantage of the delicious weather was by taking an afternoon walk - an activity that would serve the dual purpose of putting Emerson to sleep while giving me the chance to try out my new camera.

This "relaxing" walk ended with Emerson demanding to play at the park instead of napping and I took very few pictures. In fact, I learned two important things:

1) Taking an SLR camera on a walk with kids makes one look like a buffoon on safari. Emerson was in his stroller, the backpack diaper bag was slung across the back of that, Fionn was strapped into a sling on my chest, and the large camera (compared to a point and shoot) was strapped to my side like a messenger bag. I garnered quite a few comments and even more raised eyebrows. Trying to bend over to pick something up or frame a shot was downright comical.

2) Children have no respect for artistic integrity. Every time I would try to "compose" a shot with my camera, a lot of whining and shrieking ensued. I guess I will just leave it on "sports mode" and try to take pictures on the run.

So here are the lame fruits of that first walk (I spared you the pictures where I attempted artistry, but I'll post them later on flikr):

I tried to explain to Emerson that socks and sandals are a major fashion faux pas. He didn't seem to care.

Fionn is now crawling, which makes the mulch-covered playground a blast.

After I chide Fionn for eating mulch, it becomes his sole focus in life.

A couple Robbie took of the boys. He enjoys the fact that you can press the shutter and take continuous pictures - hundreds if you wanted. Therefore we try to hide the camera from him as much as possible:

Thursday, September 10, 2009

Woo Hoo

The Good News: I finally broke down and got a new (ish) Nikon D40 camera. This means I can finally, at least in theory, take good pictures! I can't wait to take pictures of my first born son.

The Bad News: I had to sell aforementioned first born son to pay for it.

So here's our second son, enjoying post-bath euphoria:

Fionn after we break the news that the camera is the new baby in the family:

Now I'm off to figure out how to use this darned contraption. See you in a few weeks!

Tuesday, September 1, 2009

Groping Forward

My son is going to learn to use a blind cane and read Braille.

If you had told me this a couple of years ago, I would have instantly dissolved into a salty puddle. Now I merely shrug. I think I'm able to take into stride because I know he could get by without either if he had to. But I've slowly realized that we need to give him these tools so that he has a better chance of success and independence in the future.

For instance, he can walk around (and climb and run) just fine because he knows when to be cautious. If he comes up to a change or step, he tests it out or gets down on all fours to crawl over it if he's unsure of the height. Or if he's in a hurry, he'll grab my hand and let me help him across - all of which is great when you're 2 years old. Not so great when you're 22.

He isn't near reading yet, but he will learn to read like other kids in grade school. He'll have the CCTV to make the letters larger, which is just fine for a few grades when reading is minimal. But by the time he is reading large amounts of text in high school and college, he runs the risk of eye fatigue and not being able to get through it. Thus, Braille can be a second option to turn to.

I'm thinking about these things because Fall is upon us and therefore the transition from his IFSP (early intervention plan) to his IEP (school plan) is here. This is a major process that involves lots of time, meetings, and haggling over goals, accommodations, etc. I think his team of teachers and therapists are really good, so I'm not stressed about fighting with them like some of the stories I've heard from other parents. But we have to start thinking about his short and long-term goals for school as he prepares to enter preschool in November, all of which is a little overwhelming.

Thanks to our new vision therapist, who is a little more on the ball, we were finally connected with the Michigan Parents of the Visually Impaired support group. I talked with the head of the group, Amy, the other day on the phone. By the time I hung up, I was doing my best Howard Dean "YEE-HAW!" She was a wealth of resources and information! The best part was that she mentioned her son, who is now in grade school, also had to go through sensory processing therapy and intense speech therapy.

She FINALLY confirmed for me what I've been trying to prove for the past 2 years - that there is a connection between poor vision and speech issues!!! She mentioned that many of the parents in the group have had their children in speech therapy at one point or another, which is a huge relief for me to hear. She also convinced me that it was time to get some resources outside of the school to supplement his speech therapy. After countless phone calls to my health insurance carrier, I still don't have a clear answer as to which speech therapists are covered, but I got a referral to the University of Michigan pediatric speech pathology center just in case. They *think* that center is covered, so I have to call back and attempt to talk to someone who knows what the hell they're talking about before we actually go to our first appointment later in the month. Come on health care reform - I want a public option so I can tell these Blue Cross yokels to kiss my reimbursement forms!

Speaking of health insurance, I am in the process of getting SSI for the boys as well. I've heard the monthly amount is negligent, but it would allow the boys to be covered under medicaid. This means we could finally set up an appointment with Dr. Hertle, a leading albinism expert who may be able to perform a surgery to help with the nystagmus. In the meantime, dealing with the Social Security office has already been a nightmare - and that's just trying to get a live person on the phone so I can make an appointment!

On the bright side, we finally set a date for our trip to the National Institute of Health in Washington, D.C. This November, they are paying for us to fly out and stay on campus for three days while they study the boys. This is the first time that anyone's done such a major study on albinism, so we're excited to get a chance to contribute. Hopefully someday the parents of a newborn with albinism will benefit from the information they gather so they don't have to deal with all the unknowns we deal with.

The boys have to endure three days of vision tests, skin tests, blood tests, and endless paperwork, but at least we can explore D.C. during the evenings and before we fly out. If anyone has ideas for keeping kids happy in a waiting room for hours - please share! We are used to 4-hour vision appointments and always come prepared with toys and snacks, but we're going to need the big guns this time!