Travel Log Part Two - Manic Monday

Anyone who knows us knows that we are not a morning family - so you can imagine our terror when we reviewed the schedule and realized we had to report to Admissions at 7:45am. By the time we got all four of us up, dressed, fed and out the door, we were a...tad...late. Luckily, we quickly realized that they pad appointments with plenty of time for just such occasions.

It was mainly a lot of paperwork and the Admissions playroom wasn't open yet, so I was grateful for the bag of toys we brought with us. (For other parents, the Admissions playroom is open to any patient and is FULL of great stuff. The pediatric department also has a playroom, but ophthalmology doesn't, so come prepared.)

After Admissions, we reported to Pediatrics, where they took vital signs and the screaming commenced. This part wasn't painful, of course, but trying to restrain my children is akin to murder. Eventually we were introduced to Dr. Adams, the man in charge of the study and one of the nicest people we have ever met.

He brought us into a small room to do an interview/medical history and then explained more about the study. What impressed us most was his willingness to stop and answer all our questions patiently and completely. In fact, every specialist we've met the past couple of days has been wonderful - patient, knowledgeable, personable. We've talked with many other patients visiting the NIH for various reasons and they've all said the same thing: Wouldn't it be great if all hospitals could be like this? Wouldn't it be amazing if all doctors treated their patients like people instead of the next number in a long line? If only...

One of the most interesting things we learned from Dr. Adams is that researchers are on the verge of making gene therapy for people with albinism a reality. They are working on ways to trigger pigment production in the cells and the treatment may be ready "in the boys' near future." Most likely it will be used for creating pigment in the eyes to reduce photosensitivity and possibly improve vision, although treating the skin may also be a reality for people who have a lot of sun exposure (such as people with albinism in African countries).

Once the treatment is ready, it will be tested on adults first, but he and the ophthalmologist, Dr. Brooks, assured us that it would become available to children soon after. We've heard about this treatment before, but I guess I didn't comprehend how close they truly are to making it happen.

Before breaking for lunch, Dr. Adams sent us down the hall for medical photographs of both boys. A quiet older man met us at the door and led us into a tiny photography studio cluttered with lights and equipment. The whole experience was easy enough, but I found it a little unsettling nonetheless. Something about the combination of flashing lights, a background of graphs and numbers, and the fact that both boys had to stand there in nothing but their underwear made it feel like Glamour Shots meets police mug shots meets autopsy photos. Weird.

At the end, the kind man offered to take a nice family photo in front of a normal background. He even took down our address so he could mail us the result, but somehow I doubt it will be Christmas card worthy. (Not because of his skill level, just the fact that the boys never look at the camera at the same time and we were a little disheveled from a long day.)

After lunch, Dr. Adams applied some numbing cream to the site of the biopsies and finished the interview. Emerson, unfortunately, found a way to smack his head and then - after a good cry - passed out in my arms. Dr. Adams used this rare quiet time to do a brief physical exam, including pulling down his pants to inspect his scrotum. He left to get some paperwork and I leaned over and whispered to a still-sleeping Emerson, "Don't ever let a strange man touch your balls while you're sleeping ever again." Robbie nodded and chimed in, "And that's why you should never join a frat."

When we were done laughing at our own hilarity, we took a few minutes to enjoy the peace and quiet of both boys sleeping (Fionn had nursed himself to sleep during all this). At one point, I whispered to Robbie, "It's so nice when they're quiet like this." And just as I finished my sentence, little Fionn let out a loud fart, sending us both into fits of giggles again. Yes, I'm afraid having two boys has finally corrupted me.

Since Fionn of course woke up first, he and Robbie went with the doctor to another room to do the biopsy. The process involved punching out a tiny circle of skin on the surface of their arms so that those cells could be grown and studied later on. It's definitely the worst part of the entire study, but it's also the most important.

Despite being all the way down the hall and behind two closed doors, I could hear Fionn screaming the entire time. Not from the procedure, mind you, just from being restrained for that long. The actual process should be painless due to the cream, but it's difficult to really know since neither child can talk. God I hope it was painless.

Poor Emerson fell asleep with a bruised head and woke up just as they did his biopsy. The worst part for him was the bandage since he has sensory issues to begin with. I thought his improving speech would help since I could at least explain to him that it would be over soon and we'd get a treat, etc. But along with speech comprehension comes speech expression. After it was all over, he kept looking at his bandage every once in a while and whimpering "Mama, boo boo" over and over again. Do you hear that thumping? It's my heart being used a punching bag.

Robbie and I talked a lot about how hard it has been to put the kids through all the poking and prodding, but what has hit us hardest is the thought that many parents watch their kids go through MUCH worse procedures for MUCH more dire circumstances all the time. How they get through it is beyond my comprehension, truly.

The rest of the night was spent traveling to downtown Bethesda for dinner. We were all grateful for some fresh air and the boys were excited to do the train again. We chose a nice Indian restaurant and then immediately regretted it. We've been desperately clinging to the idea that our family of four is still capable of eating at a nice restaurant, so we keep trying. And by the end of the meal, we have broken a sweat, caused enough of a mess to warrant a 30% tip, and only wolfed down our food in rare spare moments between entertaining both kids and trying to get them to eat something - ANYTHING. As this scene unfolded yet again, I sensed something different in the air...it was our spirits breaking.

Robbie looked at me with exhausted eyes and asked if I was interested in doing the free community dinner at the Children's Inn the next day. We had skipped it the previous night because we wanted to be out on the town. Plus, we felt a little strange taking a charity meal since our kids were being studied, not receiving treatment for some horrible disease. But it was becoming rapidly clear that a night in would be a good idea for everyone, so I replied, "Definitely. What about you?"

He heaved a sigh. "Definitely."

And with that, we bid adieu to the end of an era. Our nice nights out are going to be dinner in, takeout, or cheesy kid-friendly chains for the next three years.

Yes, that era went out...not with a bang, but a whimper.

Picture Schedules

I mentioned several posts ago that I was going to post the new picture schedule I created for Emerson - so here I am finally getting to it! These are often used to help kids who have trouble making transitions between activities, or for kids like Emerson who don't necessarily have trouble with transitions, but who dislike routines and fight it every step of the way. For instance, trying to apply sunscreen every morning is a lot like trying to wrestle a squealing, greased pig. (Or something like that - I'm not up on my farm similes.) These pictures make it more of a game to get through it...and letting him watch cartoons during the process doesn't hurt either. But more on that later.

I created this format using a combination of things I've seen, but if you do a Google image search for picture schedules, you'll get many more ideas. The pictures I used can be printed for free from a huge picture database on: http://www.dotolearn.com/picturecards/howtouse/schedule.htm


Here is his morning schedule (the one we use the most often since the night often just...happens...lately).




When it's time for a new activity, we move it to the front (I purchased these awesome velcro dots to make this work) and I repeat what the picture stands for. I.E. "Now it's time for sunscreen!" When the activity is finished, he gets to remove the picture and put it in the pocket folder (see last image).




Here is our night schedule:






This folder hasn't been used as much since I often forget to pull it out, but it's full of his favorite activities. I put two dots on the front so he can either pick between two favorite activities as a reward for something done well, or we can use it for the "First, then" method. This is when you take a hated activity (say...sunscreen) and put it on the first dot. Then the preferred activity (say bubbles or bike riding) goes on the second dot. The idea is to explain, "First we will do sunscreen, then bubbles." Sometimes this helps. Sometimes it doesn't.



Putting the picture in the folder seems like a lame reward, but kids get excited about strange things. The one thing I will say is that the schedules will lose their novelty for both parents and kids quickly. I find myself using them for a few days, then not for a few, then back to using them. It depends on how much your child craves strict routine (we still generally follow the routine, we just don't always use the pictures to help us, but some kids get very upset if things are not just so every day). I'm also inherently lazy.

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?

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!

The News from Binerville

A few weeks ago during Early Intervention, Emerson's OT was making him do one of his least favorite activities: play in the sand. Just like the paint and playdough in the past, she was slowly getting him to touch it using equal parts creativity and trickery. After limited success on this particular day, we tried an equally frustrating session of painting (the paint was fine - it was the rolled sleeves that drove him nuts), followed by a struggle to get him to wash his hands in the sink. When the OT asked me if he had any other tactile sensitivities, I responded, "Brushing his teeth, washing his hair, putting on sunscreen, (recently) swimming in pools, and touching stuffed animals."

She sighed and handed me a paper booklet, "Fill out this sensory profile for me and we'll create a plan from there."

I calmly said OK and took the paper, but inside I let loose a string of curses. "Oh bloody hell. Here we go again."

Luckily, the results did not create a new diagnosis as I feared, and we have gotten some helpful tips from the OT. He has made steady progress, which is encouraging except that the therapist implied none-too-subtly that a parent's over-emphasis on cleanliness could be a major contributor to the problem. She is right of course, but I have to say I was quite happy with the overly clean little man I had created. I had great hopes for his future spouse - but alas I'm being forced to give that all up so that he can one day create masterpieces out of sand and playdough. Nuts.

On a similar note, I got some interesting news from the school when I finally pushed the issue of getting Fionn's Early Intervention started. I know other parents of children with albinism are probably aghast that I waited six months to get things moving, but honestly, he's on target for all his developments and gets plenty of visual stimulation from an older brother, so I haven't been in a rush. I was dreading this conversation because technically siblings aren't allowed at therapy appointments, so I have been racking my brain trying to figure out how to pay for childcare for whoever wasn't getting therapy on that particular day.

When I mentioned this concern during the conversation, the therapist said, "Oh, that won't be an issue. Emerson will be starting preschool half days for four days a week in the Fall, so Fionn can have his weekly appointment during one of those times."

Say what?!

For sixteen hours a week the school is going to watch and teach my child for free? My mind swooned in the glory of so much free time while my heart lurched at the idea of Emerson being so old and independent. I knew that when he was 2 1/2 he would transition to a new program, but I've been dreading the resulting paperwork and special ed lingo so much that I hadn't researched what this would really mean.

Now when I think of it, I do a little happy dance



In other news, Emerson has added some new signs and a couple of words, has decided that following older kids around may be the coolest activity ever, and - thanks to some practice with large groups in Texas - we took him to the insanity that is the mall playground and he didn't shed a tear.

I still get frustrated when I see my friends' 2-year-olds counting to ten, repeating entire songs and books by memory, potty training, etc. because Emerson is nowhere near any of those things. But it is what it is.

The other day we were talking with some friends about breaking all the parenting "rules" and Robbie said (completely joking of course) "Yeah, I mean they say breastfeeding makes kids super smart and Emerson was breastfed for a full year, but look at him." We all turned to look at Emerson, who coincidentally was standing in the corner with his face pressed against the wall. The group of us erupted into laughter at this humorous if unfortunate timing and Emerson was blissfully unaware of what happened except that he made us all laugh.

(By the way, he was doing this because he's spent a lot of time in the "time-out" corner lately and to show me how little effect it has on him, he frequently puts himself in time-out while laughing hysterically. But that's another post.)

Fionn is the complete opposite of his brother in almost every way. While Emerson was very shy and stoic around strangers as a baby, Fionn is all slobbery smiles and reaching out for people to hold him. While Emerson could have cared less about solid foods for months, Fionn watches every bite that goes into our mouths like a starving Oliver Twist and he devours everything we give him (see video to come). Fionn is ready to touch everything and anything - jump into any activity with enthusiasm while Emerson never does anything without forethought and hesitation.

Emerson has proven to be one of the sweetest and most interesting children I've ever seen, but Fionn's ability to be an "ordinary" baby is equally exciting in its own way.

On a final and yet unrelated note....after my last post, my mother questioned whether Zen masters were a good comparison for my children. "I thought Zen masters led by example, by being calm and Zen-like all the time, in which case I'm not sure that applies to the kids."

"Well, I once learned about a group of Buddhist monks who beat their students with sticks to keep them alert and focused," I said.

"My children are those kind of Zen masters."