First Day of School 2009

Erik's last year of preschool started today. I left him in the humming chaos of the classroom and made it to my car before my eyes started to water.

Hypersensitive

I am unable to determine whether Erik enjoys preschool or not. I imagine he does on some level, but I'm sure if he was asked, he would choose to attend adult functions with me during the day over soaking his fingers in globs of paint and drinking watered down juice from Dixie cups with people his size.

We bundled up today and drove to school. Jeff shouted hello from his perch behind the window of the school bus. Once we were inside, I ran into the EI parent group moderator. She attempted to strike up a conversation with Erik, but he largely ignored her and sunk into silence. I led him to his cubby in the classroom and asked him to unzip his jacket, but he stood there and stared at the floor. I removed his jacket halfway, which prompted him to reach up and pull it off completely. He went through the motions of hanging it on a hook in his cubby with my hand over his, which was impressive to me. At this point, things went quickly downhill. We were fairly early, so there were only a couple of children in the classroom at the little table that held a tiny, wooden train set. Erik's subsequent meltdown was a complete surprise to me. I craned my neck from where I stooped on the floor to see what had caused this outburst. A girl played with a relatively pleasant musical toy, and I could only guess that triggered his hyperacusis. My boy's face turned tomato-red, and his bottom lip stuck out in a fleshy shelf. Tears began to squirt from the corners of his eyes as if he was in agony. I wrapped my arms around him as he continued to sob. The teachers began a maddening but sympathetic game of "Guess Why He's Upset?" I finally speculated out loud that it was the musical toy that pushed Erik over the edge. As the explanation was coming from my lips, Jeannie intercepted the electronic toy and switched it to a lower volume. She then told me I could do what I needed to do, giving me subtle permission to leave the room. I kissed Erik on the forehead, and he reached his arms out for me. That killed me. I said goodbye and walked away. I knew that he would calm down quickly once I was gone.

I wasn't in a fabulous mood to begin with this morning. I'm feeling overwhelmed, and little things are causing me to snap like a dry twig. For once I welcomed the voices in my head when I got back to the Jeep as I tried to sort my feelings out. I thought long and hard about all that Erik and I have been through in that building. In retrospect, it is quite clear that the old days were so much darker. One year ago, he slumped over and was motionless every day he was there. I remember pounding the door open and sprinting to him thinking he was having some sort of seizure when he was just playing dead around the other children. We both cried a lot. Today had a very similar feel to it, but I concluded that Erik has come leaps and bounds from where he used to be and that there will be days like this. Yes, they still suck, but they are better. Satisfied with my own self-help session, I took a deep breath and turned the key in the ignition.

As I drove across town, my cell phone rang. I answered it as if I was Mary Poppins on Prozac, hoping that pretending I was in a better mood would make it true. It was Jeannie. She reported that Erik had calmed down but was silent. One of his goals is to play with other children, so she is pushing him a bit in that area, but he wasn't having it today. She said he watched them intently, refusing to join in and looking like he wished he was somewhere else. Anywhere else. She was honest but strangely reassuring. Knowing he wasn't sobbing took some of the sting away. I said a heartfelt thank you and hung up.

I turned the car in the direction of the grocery store. I suddenly felt like visiting the cleaning aisle and sniffing the new dish soaps and laundry detergents to drown my sorrows.

Chapter Two

Teacher (watching me write down Erik's date of birth): Oh, so Erik's 4?

Me: Uh, no, he's going to be 3.

Teacher: Oh. I'm not very good at math. That's why I teach preschool.

The weather has finally transformed into something much less volatile. The evening I posted last brought probably the most violent thunderstorm I have experienced in my lifetime. There were simultaneous thunderclaps and flashes of lightning over the house, shaking everything inside. It was like the unrealistic storms you might see in old horror movies. All we needed here to complete the evening was Vincent Price. Our power was out for nearly three hours, so the house was filled with candlelight and the sound of the football game on our little camping radio. Some fires flared up nearby, but the drenching raindrops fell again, extinguishing them before they caused any harm. I retired early under the influence of an entire Unisom tablet and was shaken awake several times. Where was Erik, you might ask? He was so exhausted from the night before that he slept through the entire thing!

We had hippotherapy yesterday. Erik looked like John Wayne sitting on his horse this time when he used to look like a precious, little cowboy-fetus who needed rescuing. His body seems so strong now. Besides a little poopy pants incident in the parking lot, it all went quite well. After lunch, Erik and I went to see his new classroom and talk with his teacher. She was nice, I suppose. When I initially met her a month ago, I liked her. However, this time she struck me as unorganized and scattered. She was unable to locate her business cards, and there were no adult-sized chairs to sit in to fill out paperwork. She instructed me to sit in "the red chair," a lilliputian piece of furniture in front of a table perfect for tiny tea parties. I'm almost 5'10" and have a very sore navel, so folding myself in half like a contortionist was not on my list of things to do. I obliged, however, and hunched over a stack of papers, signing where instructed. Some sort of classroom helper sat to my left and said almost nothing. I was quite impressed with the new speech therapist from Maine, who came to join us halfway through our meeting. He was a handsome guy with pewter-colored hair and lines on his face from smiling kind smiles. The teacher asked me to explain Erik's diagnosis to him, which went better than it ever has, even though it has been months since I have done this. I sounded like I was reading out of a book, but it all flowed automatically from me as the women nodded a little vapidly. I explained all of the points I wanted to, and he sounded quite interested. This man seemed highly intelligent and quite interested in Erik's strengths. Erik played with trucks and doll strollers quietly as we talked. When the speech therapist said goodbye and stood up, Erik looked up and said, "See ya next time." The man was quite surprised and laughed.

Brian attended the meeting on IEPs last week, as I was at hippotherapy earlier in the day and was completely burned out. He was told that the school district staff members are instructed not to offer extra services to parents of children with special needs unless they specifically ask for them--all in the interest of saving money. I shudder to think what happens to kids like Erik when their parents aren't as involved as we are or simply don't care. I am going to try not to think about that, because my heart will split in two.

Aches, Pains, Teeth, & Gains

Don't tell me how to live my life
Don't tell me how to pray
Don't tell me how to sing my song
Don't tell me what to say

Cuz I believe that miracles
happen every day
I don't care what you say,
I'm gonna do it my way

-- "My Way," Los Lonely Boys

I have to make this short, as my job has given me a moderate case of tendinitis, the likes of which I have not experienced since my days of shoveling pizzas in and out of an oven at my job in high school. I will purchase a brace today. I haven't had to wear one since I started transcribing 10 years ago. Hopefully, with TLC it will improve slowly. I hope so, as I have a short story in my head to write for another contest in San Francisco (Thanks, mom!).

The transition meeting went well. We chose Erik's preschool class and met the new members of Team Erik. I loved all of them immediately, of course. I sometimes feel like we do not have much support in town, but if I sit down and think about it, we have what we need. These folks are highly qualified and caring. They did the appropriate amount of oohing and ahing over Erik's photo and seemed to be curious about his syndrome, asking if there were videos, etc. One had even worked with someone with WS. I stalled a very long time chatting after the meeting because Brian left early to take Erik to the dentist, and I didn't want to witness that. The exam was reportedly very rough and made Erik cry very hard, but his teeth looked so good that no coat of lacquer was required. Glory be!

I spent an hour in the grocery store during Erik's pool therapy yesterday. As soon as I put him in the pool with Ms. G., he said, "Buh-bye, mom!" I was free to go. I bought a new oxygen-filled dish detergent and apple-scented candle for Erik's bathroom. I love my time in the grocery store. If loving Mr. Clean is wrong, I just don't wanna be right.

Lastly, Erik's language skills are sharpening. For instance, I was pouring some lemonade into a glass when he walked by this week, and he said, "Yellow water." Later he was in his chair threatening to tilt his glass over instead of drinking its contents as he enjoys doing. When I tried to take it away from him like I usually do, he glared at me and said, "Let go, please."

It was a hard week, but it was good.

Graduation

Summer is making itself known today. Erik's plastic-encased legs are sticking out of a new pair of shorts, my tan from a bottle is slowly tinting my Viking skin a faint, dirty tangerine color, and there is a roaring wildfire to the north emitting a choking, carbon-infused haze that permeates the horizon in every direction and adds sweeping Technicolor to the sunset like the end of an old spaghetti western. I just fastened the long cushions to the metal skeletons of our chaise lounges on the back porch and am attempting to cool the house down to a less than hellish temperature. Erik is technically supposed to be sleeping in bed with his stuffed puppies (Stinky & Dog), but instead I can hear him in his closet spinning one of his favorite toys. Brian drove off in his Jeep in his softball attire to play a game across town.

So here I am with a glass of red wine and my thoughts.

This week has been fairly calm, but looking ahead on the calendar, I see next week will be much different. Sunday Kathy and I are doing the local 5K breast cancer walk/run. Having successfully worked out for weeks now, my calves, thighs, and portions of my arms are beginning to bulge to proportions never seen on a human female before. I foolishly thought that perhaps I would become a slightly more slim version of my former self. Instead, I find I am only adding on to my already Amazonian stature, enlarging like a steroid-shooting member of the Super Friends. However, I digress. After the race, we plan on joining Kathy's family at a nearby lake for some rest and relaxation with the boys before a week that contains one salon appointment to rid myself of my split ends, an appointment in which we must hold our screaming child down to have his teeth lacquered, one session of pool therapy, our first transition meeting with a rather intimidating panel of professionals, and our neighbor's graduation party, which, while in the midst of some sort of fleeting manic, euphoric state, I agreed to help set up. In addition, I have to cram work in there somewhere.

Admittedly, however, the big day is Tuesday, which is Erik's end-of-the-year party for his early intervention program (EIP). This isn't our actual end yet, as Erik attends four more weeks of summer program. Then it's officially over for good, as Erik will turn 3 this fall and transition into "normal" preschool. In short, this means no more EIP.

I confess that I find myself more than a little sad about this. After all, EIP is where we began our journey, and I will never forget meeting the first members of "Team Erik." Frankly, I had no desire initially to meet any of them and bristled at the whole experience, thinking it was all temporary and that Erik would soon prove everybody wrong, including his pediatrician, but as I surrendered to the horrible permanency of our situation, I have grown to appreciate all of them and even feel love for some of them. I will soon no longer be required to pass by the little evaluation room on the way to Erik's classroom each week and feel my heart break a little bit every time. I have only been inside that room once on just one very horrible day. I can't stomach the sight of it with its child-sized wooden kitchenette and brightly-colored educational toys. Its cheery contents mask the absolute gut-wrenching heartbreak that is experienced inside. In rooms like these I now never fail to notice the very subtle but ominous presence of a single box of tissues ready to absorb grief. I see the table where Brian and I sat that very first day and the two-way mirror through which we were observed. Most weeks I pass by this room without turning my head, but when I accept an occasional self-imposed dare to glance that direction, my stomach lurches on my way by. Sometimes there are parents and a child casually playing on the floor inside, but mostly the place is deserted and quiet. I resist an occasional urge to stop and stare. It's crazy, but I am certain there is a piece of me still trapped in that room. I recognize it as ghostly vapor in my peripheral vision as I pass, but it vanishes when I turn to look at it. It is no longer mine. It is forever lost to me, doomed to haunt the place forever. Perhaps one day another mother will feel it pass by in the middle of shaking her head at the forms piling up in front of her like a paper snowdrift. Perhaps she will wonder at the sudden goosebumps on her skin and turn her head to smile at her child sitting on the floor staring blankly ahead for reasons about to be discovered as she begins a nightmare of her very own.

I now have four weeks of parent group remaining in the room just down the hall. In this particular room, we are on our second coffeemaker, and the chairs are almost always full. I have watched mothers and fathers come and go, most of whose names never sank into me somehow, and I sometimes briefly wonder what happened to them. As for me, I will soon be a memory here and will leave my wooden rocking chair for another mother with a newly jumbled heart to occupy. This fall when I enter the front door, I will turn to walk down a new, unexplored hallway to Erik's preschool classroom, but I will undoubtedly glance through this familiar doorway on my way by, too, remembering the first day I my feet took me into this room instead of straight out the front door to my car. I will always remember this room, but I will no longer be a member inside. The metal door will be closed tightly, and through the safety glass window I will glimpse another pale face silently floating over a cup of lukewarm coffee. Our eyes will meet, and I will turn to continue my way down the hallway into a brightly lit classroom filled with construction paper turkeys, long tables, and tiny chairs instead of therapeutic swings and exercise balls.

Thank God.

I will graduate right along with Erik this year.

One Year IFSP

My wish for you is that this life becomes all that you want it to,
Your dreams stay big and your worries stay small,
You never need to carry more then you can hold
And while you're out there getting where you're getting to
I hope you know somebody loves you and wants the same things too

-- "My Wish" Rascal Flatts

Erik and I just got back from an extended morning/afternoon at our early intervention facility. We went to our respective groups this morning and then had two hours to kill before we went back for our one year IFSP meeting. I drove over to my folks' house nearby and watched The Daily Show and the Colbert Report while Erik played with his toys and brought me books to read. We were both relaxed. The anxiety I felt before our prior evaluations failed to quicken my pulse and cause my stomach to flip like a fish out of water this time.

Brian met us back at the school for the IFSP at 12:15. There was a panel of four people to greet us. They were sitting in an ominously dark classroom with a humming laptop computer. The meeting seemed much more formal this time. I smiled when I saw Bev's bright red "Team Erik" bracelet peeking out from underneath her sleeve. Once we began our discussion, I commented that the goals they set for Erik each time he was evaluated over the last year seemed ridiculously lofty to me at the time but that this evaluation felt very different. In the past it seemed unlikely Erik would come close to reaching any of their seemingly advanced goals, but he has proven me wrong time and time again, mastering new skills and meeting almost every goal as he grows. Today we again set goals, including pretend play, using pronouns, climbing on playground equipment without assistance, using both hands to complete tasks, using three words together, asking questions, and dressing/undressing himself to prepare for toilet training. Erik has already clearly begun to progress towards most of these goals, although his disability makes some typical activities challenging. However, he has demonstrated that he is beginning to physically and mentally compensate in areas he has difficulty with, such as feeling stairs with his toes/feet when he cannot visually determine their edges. In other words, he is beginning to adapt to the world beautifully using his strengths to triumph over his weaknesses. It's an amazing process to watch unfold. I couldn't be more proud of our son.

Because I do not witness what happens in his classes each week, it was wonderful hearing what the other staff had to say about Erik. He is obviously a beloved part of the program. He knows each of the numerous children and therapists in his classes by name and greets them each week, something no other child there is able to do at age 2. His turned in left toe was not evident in class today, but his physical therapist told me she is beginning to determine it is a problem that originates in his hip and pelvis that results from anxiety manifested as muscle tension. He will continue to wear his orthotics for most of the day for the time being to keep his feet flat. They asked us what he loves in order to help coax him to learn, something they all agreed is generally not a problem for Erik. We told them that he loves his family, music, and the outdoors. He is easily distracted and anxious, which is the biggest obstacle in his learning, and we will work on that in different types of busy environments over the next year. This has already greatly improved.

We now look forward to taking a big step. By September, he will likely be the youngest child in his preschool class but will have an extra year there before he enters kindergarten as one of the oldest children, something I see as a definite plus as he begins his formal education. We will probably decide to enroll him in the preschool class at the same EI facility he is accustomed to two days a week for two hours at a time, and he will ride the school bus home. I am hoping there will be typical children in his class.

It's hard to believe that just one year ago we wheeled our quiet, drooling 17-month-old in for an evaluation. He was unable to walk or follow instructions. He did not play with toys appropriately. He barely responded to his name. In fact, he did a whole lot of nothing, although he was very pleasant about it. He really had little opinion on anything at all and had never said "no." Not once.

In contrast, today was an emotional day knowing how far we have all come and how much brighter the future looks. One year ago, I thought my life was over. I thought the darkness would never lift. I did not know how we would begin to survive what had happened. My son would either die or live his life in an institution. Today I can take a look back and easily see that those profound, seemingly mortal wounds have become shiny, pale scars I will always carry with me. I actually forget about them now unless the light hits them just right.

I can see that there is a lot of life left to live. I am excited to see where this beautiful boy takes me next.