Friday, January 8, 2010
Step One: Admit You Have a Problem
One moment I feel Progress sprinting by - lean, agile, unstoppable. The next moment, Progress is face-planting into the pavement.
One day he's smiling and saying "Hellooo!" to strangers. The next day I ask him to say hi to his teacher and he screams, "NOOOO!" and attempts to slap me. One day his training pants are dry all day, the next day he won't come within five feet of his potty chair.
Yesterday was a perfect example. After arriving at preschool, I was clumsily unbuckling his car seat as usual, and as usual he was complaining. "Buddy, we need to go into school so you can have fun with your friends and learn new things," I pleaded. He stopped and smiled. "Yeah! 'chool!"
This was the first time I heard him say school, so my heart leapt. He was so pleased with his new skill, he repeated it all the way to class and I couldn't stop beaming.
Later that night, I was trying to simultaneously bounce Fionn on my hip, cook dinner and help Emerson paint at the table. I would paint various colors on his hand and then he would create bright handprints over and over again on the paper. When we entered his "purple phase," he surprised me by looking at his hand and saying softly, "Puple." Two new words in one day is huge compared to his rate of progress a year ago, so I couldn't be happier.
After I put him to bed, Robbie and I sat down to watch The Daily Show. Robbie's celebrity girlfriend, Maggie Gyllenhaal, was a guest and it didn't take long before she started telling stories about her three-year-old daughter. At one point, she was discussing how hard it was when they watched movies like "Snow White" together because her daughter had so many questions about the death and violence in it.
I grimaced, pained by the idea that a typical three-year-old could not only sit through an entire movie, but could formulate questions about the meaning of death. I know Emerson is advancing exponentially and I should be focusing on that, but every once in a while these reality checks knock the wind out of me.
I guess the first step toward my Pollyanna reincarnation, then, is remembering to keep my eyes on the path right in front of us and not how far we have to travel. I've told myself this about 100 times already, but maybe 101 will do the trick. I'm optimistic.
Monday, November 16, 2009
School Daze.... or "An Extremely Detailed Post Only Suitable for the Most Committed of Readers"
All the way downstairs I sung our new theme song, "Preschool Musical" compliments of Sesame Street. Today we were visiting what will soon be Emerson's new preschool class, in the hopes that a couple hours of introduction will ward off a nuclear meltdown when I drop him off the first day. Considering that lately I can't even go upstairs without causing him to tear his hair out and scream at the top of his lungs, "MAAAAAAAAAMAAAAAA!!!" this seems doubtful. The teacher assured me that if he had several days of tears, he would not be the first, so I'm just praying he will at least settle down quickly.
A few weeks ago, the whole family attended the preschool open house. Robbie doesn't get to be part of school, so the boys and I enjoyed showing him our routines and introducing him to the various teachers. Then we took a tour of the building and learned that the entire school is devoted to Early Intervention and Head Start (which is impressive considering how big it is). Emerson began attending the EI program once a week as an infant since he had a medical diagnosis, then moved on to two times a week in the toddler program, and now half days for three years in the EI preschool class.
Even though we've been attending for three years already, I learned a lot on our tour. There are several gyms, music rooms and a little library where they check out books once a week. Each classroom has a main teacher, two or three parapros, a physical therapist, speech therapist and an occupational therapist. There is also a bathroom in each classroom where the teachers help to potty train them and brush their teeth. They are served both breakfast and lunch (although being vegetarians I will have to pack his meals. But still - someone ELSE has to make him eat it!) We also learned we will get report cards and have to attend parent-teachers' conference.
But the bit that nearly dropped me to the floor - a bus will pull up to our front door to take him to and from school each day! I guess I had imagined preschool to be like the toddler program except a little longer. Instead, I'm realizing we are knee deep in the school years already.
I have to admit I'm a heartless bitch because none of this makes me wistful for Emerson to be a baby again. I don't tear up at the thought of being away from him for hours a day. After being in charge of his every movement 24 hours a day, seven days a week for most of the last few years, the idea that someone else will help me raise him is better than winning the lottery! The only thing that makes me choke up a bit is the image of this tiny person sitting on a giant school bus. Not enough to keep him from riding it mind you, but it's definitely something we need to ease into.
When we arrived for today's warm-up session, Emerson bounded into school with excitement and energy. That is, until we went to his new classroom instead of our usual room. For the first few minutes of group time he pouted and kicked his legs, but by the time we sung "Mat Man," he was starting to thaw.
The idea that Emerson is in a class only with other special needs kids has been a touchy subject in our house, but seeing the classroom in action at least assured me if not Robbie that it is the right place for him. The kids in the class have varying degrees of special needs, most of which aren't obvious to the casual observer, so I think there is plenty Emerson can learn from them. I also love that the classroom makeup looks straight out of a Benetton ad, with every ethnicity (including Pacific Islander) represented. Gotta love Ann Arbor.
During our visit, I made several mental notes about things to bring up at the IEP meeting this Friday (i.e. he needs to sit at the front so he can see, he needs a parapro to keep an eye on him during outside time so he doesn't tumble off a wayward step, etc.) and I made notes for myself (i.e. always send a thick coat, buy a bento box for lunch, etc.). So now I'm feeling much more prepared and ready to face the adventures ahead.
In the meantime, I informed all the teachers that Robbie was going to make his famous chocolate chip cookies for our IEP meeting, so hopefully that will win us some brownie points as we enter into negotiations. I expect the meeting to go smoothly, but there are a couple of issues (like getting fluorescent bulb jackets for all the classroom lights to cut down on eye strain) that will take some hashing out.
Now I just need to inform Robbie that he is going to bake his famous chocolate chip cookies...
Friday, November 6, 2009
Picture Schedules
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.
Monday, September 21, 2009
Answer Me!
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?
Tuesday, September 1, 2009
Groping Forward
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!
Thursday, April 30, 2009
The News from Binerville
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."
Tuesday, January 13, 2009
Hallelujah!
The first and most important news is that my mom is coming to town at the end of this month to help with the boys and house while Robbie's on a business trip. There have been many, many times this past month that I've curled into the fetal position and said "I want my mommy" - and now I get my wish!!
The second bit of news is that after several months of our vision therapist being MIA, a new therapist called to say she was taking over and we could start services for both boys again. I hadn't bothered to track the old one down because (as my Southern friends would say) she's a very sweet woman, but bless her heart she can't teach worth a damn.
For instance, I had asked her long ago about bringing in a light box to do some of the activities I've seen on other parents' blogs. She said she would look into it, but like everything that went onto her long "I'll look into it" list, I never heard about it again. This new therapist told me - unprompted - about all her goals and activities, including bringing a light box! Finally something is getting accomplished without me having to push and prod.
Talking to this woman reminded me of the time two years ago when our first therapist came to interview me and set up services for Emerson. We were sitting in his nursery and she was rattling off questions while I rocked my sleeping baby in the glider. His white hair was glowing in the cold winter light coming in from the windows, so I tried to focus on that instead of the growing pit in my stomach.
Despite my efforts, the tears came, rolling off my chin and quietly landing in his glowing hair. So quietly in fact that the therapist didn't even notice until she was almost done with the interview. When she finally realized, she stammered out an apology and gave me a sympathetic if confused look. "Sorry, I'm just trying to get used to all this," I said. By the time she left, I was thoroughly embarrassed and overwhelmed and sick to my stomach.
But we've come a long way since then, baby. A long way.
Thursday, October 25, 2007
Just the Two of Us
Right now Robbie is probably sipping a margarita on a private beach at his resort in
Anyway, Emerson has already been making progress on his own lately, so I think the regular therapy sessions starting next week will give him a real boost. I think part of the reason I am feeling so vulnerable about it right now is that I just got back from another "playdate" with a fellow mom and her baby. I love these dates - it's a chance for me to connect with my friends, vent about parenting, and I think it's good for Emerson to be around other children. But it's always a little hard to see how our friends' kids are transforming into little toddlers while Emerson still seems so baby-ish. I know he'll catch up in no time, but it's hard to watch him getting left behind, trampled and otherwise manhandled by his more advanced compadres.


