What you don't know you can feel it somehow
-- U2 "Beautiful Day"
The song I listened to several times the day Erik was born. It still makes me cry.
Yes, I know it's early. I have been up since 2:15 with a briefly sobbing child. I have no idea how long he had been lying in a ball on the floor behind his door with his bedroom light on crying, so guilt prompted me to scoop him up in my arms and take him to bed with us. This is something I rarely do. I put him between us, and his hands ran over the contours of each of our faces in the dark. Realizing his father was lying there, he greeted him with the usual, "Hi, Booga." After a little mumbling to himself in an obviously happy state of mind, he fell into a deep sleep.
Erik snores like a dump truck repeatedly driving through a nitroglycerin plant. In fact, he makes his father look like a complete amateur. No, it's not normal for a toddler to snore. I have been informed of this and was provided handouts on sleep apnea/congestive heart failure. Although I will address this with his physician at his upcoming routine visit, while I listened to him this morning, it was quite apparent the snoring is just the familiar rattle in his chest magnified. He used to grunt loudly as a baby when he concentrated on something, and many folks thought he had asthma, as they mistook it for deep wheezing. I never worried about this and grew to love it along with the other strange physical quirks my baby has. When your body is missing one of the essential components to keep things springy and tight, you can't expect everything in your chest not to shimmy around a bit. However, sleeping with him is completely futile. My baby's adorable, but he's a freaking rattletrap. Always has been.
Today is Erik's birthday party. Although there will be brightly colored balloons and the appropriate decorations, I have kept the pediatric guest list to a minimum this year once again because of Erik's tastes/hearing, and the annual event still has a very definite cocktail party feel to it with a few adult friends and family members. It probably always will, because that's where Erik is happiest--around adults having a good time. I fantasize about Erik being the center of attention at future parties here, playing the piano and loving every second of it. Maybe I can set up a tip jar.
Erik's IFSP was Thursday. He was tested by two staff members at his school, one of whom has worked with him since he first attended and one of whom was present the awful day he was labeled "severely developmentally delayed" for reasons we had yet to discover. I'm delighted to report that the evaluation room no longer infuses me with depression that lingers long after I exit now. However, the obnoxious hum of the fluorescent lights, the bland-colored miniature furniture, and the looming stacks of paperwork inside make me instantly exhausted to my bones.
Erik was seated at the tiny table and given a rapid salvo of instructions to follow, including answering questions about photos in a book, stacking blocks in a tall tower, and putting rings on a stacking toy. He was then asked to climb a set of tiny stairs. I sat silently with Brian, and we attempted not to be a distraction during testing. Although Erik was completely distracted by the sounds in the hall and we had to close the blinds to minimize visual stimuli, he did beautifully. The kid obviously doesn't test well, and it was quite apparent to these ladies that he knew exactly how to answer the questions and respond to their instructions but would rather be socializing with them or finding a toy truck to roll around the room. The tester that is not familiar with Erik kept having to hide her face in the crook of her arm or turn away, as he would greet her repeatedly in falsetto, and she tried to remain serious, very ineffectively trying to stifle her giggles. He would smile sweetly and cock his head often, precisely imitating the cute noises Janet made as she demonstrated what she wanted him to do.
Erik's preschool teacher then joined us, and we completed his goals. I explained that if there was anything I have learned at their facility, it was that I believe anything is possible for Erik. Goals on paper looked insurmountable at first, and I was easily discouraged. At this point, even if I wince and wonder if one of his goals is realistic, I can freely admit that all things are possible. It's not the end of the world if he doesn't accomplish a specific goal set, but he has demonstrated time and time again that I need not worry about that happening regularly.
The test was scored down the hall while we waited. Instead of feeling anxious, I tried to fight falling asleep as the room did its best to suck the life force from me. As for the test results, we will receive a formal report by mail soon, but Janet and Allie soon returned and let us glance at the paperwork after smiling and informing us we might be surprised by the results.
Most areas of Erik's development were quite comfortably charted in the meat of the purple "typical" range on the graph.
The only part of the testing he failed miserably was gross motor. He was asked to walk up and down that set of tiny wooden stairs in the room and appeared as though he had downed four Long Island ice teas before attempting this. It didn't help that he wasn't interested in the task, either. I again explained the visuospatial problems that are and always will be a fact of life for Erik and then my confidence in him, knowing he will grow and master using other senses to accomplish tasks like these during which his eyes and brain don't seem to communicate normally. He will find his own way in his own time. I couldn't be more proud or more confident.
By looking at the test scores, Erik would NOT qualify for special education services. Oh, yes. He's that good. However, because of his diagnosis, he automatically qualifies. My hope for the future is to find a niche for Erik between special education and typical education to guide him through school. I want him to enjoy a normal life but receive the services that work for him, no matter what they are. I am not a mother who insists upon everything in Erik's life being "perfectly typical," because he's not and never will be. However, I am quite sure there is a perfect place that's typical for Erik and our family in the world, and we are well on our way to finding it. That's very exciting.
Three years ago tomorrow at this time of the morning, I was exactly one week overdue, bulging with baby. I was probably awake in this very chair making the music CD I would take to the hospital to listen to while I was in labor, blissfully unaware that Erik was about to give us all a great scare on the monitor that would be strapped around me to record his mysterious life rhythm. He threatened to quietly slip away from this world, but hours later he would be tucked into a hospital bed with me sleeping peacefully, as if he had been with me all of my life.
I will be the mother of a 3-year-old this weekend.
That's exciting, too.