Flying Colors

What you don't have you don't need it now
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.

Typical?

Wow.

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.

News at Eleven

This weekend when Brian was hiking Erik a toy football, it went whizzing by, and Erik said, "I missed it!" Brian and I both stopped in our tracks and looked at each other totally surprised. He has a lot to say these days with "No want it" and "I want-___- please-okay" being a couple of his favorite phrases.

The big news is that he is really picking things up in his occasional days spent at daycare (besides germs that almost kill me). He has napped for this woman every time and Monday actually ATE BROCCOLI AND CARROTS. You may remember that I call Erik a "cookievore." Once I overcame a slight twinge of jealousy, I was so thankful! Since he has gone to this woman's home with the other children, he has successfully napped here once again. Yesterday I bit the bullet and put a little ranch dressing (oh, how I miss ranch dressing) and some quartered baby carrots on his plate at lunch, and he ate them with only a little coaxing. I almost fell the freak over. For his morning snack, I had given him a couple Nilla Wafers and milk, which is something I rarely allow, and I'm thinking that perhaps I need to remove the stick from my backside and relax a wee bit. It paid off! I am learning a lot from daycare, too!

Erik is retrieving his step stool so he can stand at the kitchen sink now, and I sometimes put warm water and bubbles in front of him to play with. Oh, sure, I mix in a couple dirty cups now and then for him to wash, but he doesn't seem to notice or mind. He ran inside last night when I announced it was bathtime (he usually sobs when it's time to come inside) and has very quickly and quietly lowered himself into the bathtub when I turned to get a towel in the last couple of weeks, diaper and all. That boy loves being in the water.

Our IFSP approaches on September 10th, and Erik will attend school and likely take his first school bus ride the very next day. I'm trying not to be a wreck, but I am anyway. My mother told me yesterday that she was a wreck when we went to school for the first time, so she didn't see why I shouldn't be. That made me feel a lot better. It's funny how my time revolves around Erik progressing and succeeding, but when it actually happens after all of that work, it's so frightening! I'm a happy wreck these days.

Paper Jockey

Glancing at the white parent notebook we were provided by early intervention around the time Erik was diagnosed, I noticed for the first time that it looks suspiciously as if it is pregnant. Its metal binder is now bulging with all sorts of papery goodness. Honestly, I had no idea how much paperwork having a child with special needs would generate. I am quite positive that our family is solely responsible for the destruction of thousands of acres of trees used to manufacture the tomes necessary to keep us informed, updated, and instructed on how to best care for our son. Our kid automatically came with a manual, a newsletter, fundraisers, feeding instructions, and physical/speech/occupational therapy instructions. I collect paperwork on each individualized family service plan (IFSP) and save every newspaper article that relates to WS in any way. I previously shook my head in disbelief upon hearing stories concerning elderly eccentrics who were crushed to death under stacks of newspapers in their cluttered apartments, undiscovered for weeks. I can quite honestly understand how that might occur now. I have only been at this a year and change, and my stack grows daily. Months ago, I cleaned out Erik's closet shelf, which housed all of the books and paperwork we were provided at the hospital pre-diagnosis, as none of it seemed to apply to our family and triggered depression in me, and I sent it all to a speedy execution in our rusty burn barrel. In its place are stacks of books on special needs, developmental delays, speech, fine and gross motor skills, bilateral brain half stimulation, and Williams syndrome. I am now a freaking walking library of information, and I have only gone through half of it all. I failed to mention our growing video collection. Our den has several copies of A Very Special Brain and Growing Up Different, which I occasionally lend to curious friends and family. This doesn't include the bottom drawer of my desk in which there are reams of insurance documents. We receive them weekly relating to doctors' visits and our weekly physical therapy sessions. If I don't keep up with them, the ominous stack of white envelopes with the glossy windows accumulates by the phone and eventually spills over onto the kitchen desk.

I guess my point is that it is quite possible to feel utterly overwhelmed by the waves of incoming paperwork, be crushed by it, and lie undiscovered for weeks underneath it all. Most of my collection is put away on the top shelf, behind a closet door, or in a closed drawer so it isn't staring me in the face 24 hours a day. It is overwhelming at times. Our next IFSP is scheduled for September 10th. In addition, I will be attending a class entitled The IEP Dance, Learning the Steps this week, where I will likely collect more reams of paperwork instructing me how to successfully complete yet more paperwork as we begin our interaction with the school system. Personally, from what I understand, I would call it less of a dance and more of a fist fight. I already feel a little anxiety percolating in my stomach about this, but we have a couple full years to prepare for it all. I just have to remember that it's okay to feel a little nervous and overwhelmed (who wouldn't?) as long as I can close the drawer on it all occasionally and wrestle with my son, tickling him until the choppy, high-pitched giggles come pouring from him. You may remember me mentioning that little log cabin with the red and white gingham curtains in my daydreams where Erik and I used to go to escape the therapists and doctors at the beginning of this journey. Although the place is mostly shuttered and a little musty now, we still go there occasionally to bake banana nut muffins and lie on the braided rug in front of the fire. In those daydreams, I never once had the desire to open the curtains to discover what was outside. This particular daydream was an essential part of my survival in those early months. If there's one thing I have learned, it's okay to keep the curtains closed from time to time. Besides, I suspect if I had yanked them open to see what was behind them, I would have likely seen giant snowdrifts of paperwork.

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.

Chilly

Samantha & Erik

Our trip over the mountains to visit my soon-to-be 90-year-old grandmother was placed on hold because of an approaching storm that looked like a pulsing, chartreuse booger on our meteorologist's radar screen on last night's news. It did snow here all day Thursday, but we don't have much to show for it now. Thursday was the day we had pool therapy in the morning and a home visit just an hour after we got home from that. It was insane. On top of everything, I grocery shopped, worked, shoveled snow, cooked dinner, and rescued a stray dog that refused to leave our property and sat in the storm all day. I am happy that we survived the week, although I'm now exhausted. I'm glad that our IFSP has been rescheduled for March.

Erik stacked some blocks this morning, but he is more into demolition than construction. Last night I built towers, and he systematically destroyed them Godzilla style. Each time a tower met its demise, he would exclaim, "Oh no!" or "Oh nuts!" He later fell off the love seat like a seasoned stunt double, crawled up onto my lap, and said to himself, "Poor baby!" What a character. I laughed a lot yesterday.

Since my computer's hard drive kicked the bucket, I had to reconstruct an updated backup of my blog to store on a CD. It was interesting, to say the least, to revisit what I have written here. I have nearly 200 pages of written material now. I was genuinely surprised to see just how far I have progressed over the last year. My bad days are few and far between now, although they still sneak up on me. I am glad I have a place to sit and write how I feel. I cannot share my feelings verbally to this degree with anyone, even if I pay them good money to listen. I have always had a difficult time expressing how I feel verbally.

Most of my fear now comes from the unknown, especially when it comes to Erik's future health. I have learned to take one day at a time in that regard and enjoy my moments with him as fully as humanly possible. I can also do nothing in terms of predicting what his level of functioning will be at this point except for hope for the best and attempt to teach him the best I know how. This requires a great deal more creativity than I anticipated in terms of helping him understand the world. I imagine it's hard for some people looking at my life and reading how I feel to understand why I write what I do. I can't describe how difficult it is to simply enjoy things like most mothers when I am being instructed how to teach my child to speak by speech pathologists, how to walk by physical therapists, and how to eat, dress, and even play by occupational therapists. Erik and I are both being evaluated and scored. The truth is, this has simply sucked a lot of the normal out of being a mother. No, I don't enjoy things like most mothers. I never will. However, I feel less and less sorry for myself as time passes. Why? What I discovered long ago is that I actually treasure each smile, word, step, and accomplishment more than most mothers ever will. Watching Erik reach each milestone is simply extraordinary, creating in me a first-man-on-the-moon-type of feeling in my heart, releasing a thousand butterflies in my stomach, and making me feel I could easily walk on air.

I remember being pregnant with Erik and driving home from the hospital after we found out we were going to have a boy. I have always wanted a son, and even though I was alone in the car, I actually said out loud, "God, I'm not worthy of this!" I had tears running down my face, and I was the happiest girl on the planet. I wanted to fall to my knees. At that moment, I was imagining a very different life for our family than the one we live now. I had no idea where Erik would take me and how many wonderful people he would bring to me. Despite all of the challenges that we face, I still feel the same way every day. I'm incredibly blessed to know this little boy, and it's a true honor to be his mother. I'm still not close to being worthy of such an incredible gift and such gigantic responsibility, but I take great comfort in the fact that I know I am doing my very best.

As Erik would say, "All right! All right!"

Sheesh. Somebody pass the freaking Kleenex.

Today I plan on watching the storm swallow the mountains, and I'll start a batch of chili eventually. You are welcome to join me! I wish you all could.

White Chicken Chili

1 T vegetable oil
1 chopped onion
3 cloves crushed garlic
1 can (4 oz) diced jalapeno peppers
1 can (4 oz) chopped green chiles
2 tsp ground cumin
1 tsp dried oregano
1 tsp ground cayenne pepper
2 (14.5 oz) cans chicken broth
3 cups chopped cooked chicken breast
3 (15 oz) cans white beans
1 cup shredded jack cheese

Heat the oil in a large saucepan over medium-low heat. Slowly cook and stir the onion until tender. Mix in the garlic, jalapeno, green chiles, cumin, oregano, and cayenne. Continue to cook and stir the mixture until tender, about 3 minutes. Mix in the chicken broth, chicken, and white beans. Simmer 15 minutes, stirring occasionally.

Remove the mixture from heat. Stir in the cheese until melted. Serve warm.

(You are what you eat. I like mine hella spicy. You can substitute mild green chiles for the jalapenos to tone it town, if you'd like.)

Here We Go Again

Our individualized family service plan (IFSP) is scheduled for Tuesday, February 20th. We meet with therapists who have been taking extensive notes on Erik's physical and mental abilities for the past six months. There will be a panel consisting of an early intervention specialist, a physical therapist, an occupational therapist, and a speech pathologist.

After Erik's last IFSP, I feel a little less like vomiting in the nearest trash can than I did last time, but the thought of this meeting still makes me feel uneasy. There's nothing quite like having your child under a microscope and receiving a score as if we participated in some sort of twisted Olympic event.

I can't believe it has been almost one year since our first evaluation at the early intervention facility. It seems like yesterday. I had no idea what it all meant, and it seemed the therapists were talking in a foreign language. To be quite honest, I didn't pay much attention to it all, as I felt like all of it was merely temporary and wouldn't apply to us. Towards the end when one therapist stated, "We hope you won't be devastated by what we are about to tell you," I remained deeply rooted in denial and kept smiling, assuring her we were perfectly fine with anything they had to say. I failed to predict that everything in our world would come crashing down on us a mere one month later upon receiving Erik's diagnosis.

The following is taken directly from Erik's primary IFSP report dated 02/23/06. He was 16 months old at the time.

Nancy reports that Erik was late in his developmental milestones. He babbled with sounds as a baby but has not said his first word. He is a healthy child with no reported ear infections. Erik does not like thick consistency foods and gags and chokes when fed. He passed his newborn hearing screening on the fourth attempt at six weeks. Mom reports that he is very sensitive to sound. There are no concerns with his vision.

Erik came into the evaluation with his mother via stroller. She wheeled him into the room as he was watching the wheels on the stroller. She then took him out of the stroller and placed him in hands and knees on the ground. He immediately crawled over to the carpeted areas, and cars were placed in front of him. He picked one up and began to spin the wheels. When the examiner came over with some toys, he showed interest but began by putting all new toys into his mouth. When his father entered the room and sat at the table, Erik was asked, "Where's daddy?" and after several repetitions of this, he looked over at his dad. he would take many of the toys and spin them either on the ground or with his hand. He rolled various toys on the ground as well (bell).

Erik does display characteristics similar to children with autistic spectrum disorder. However, further evaluation is not suggested at this time. Erik's scores were more indicative of a child having cognitive difficulties.

They apparently didn't see what was coming, either.

There have been a lot of changes since then. The W bomb dropped almost a year ago, and the dust is settling into managaeble drifts. Erik is walking and talking like a champ now. A year ago he was still acting like a drooling infant when other kids his age had been walking and talking for months. A couple of months after this report was produced, Erik began to walk and made great progress in his developmental milestones, which provided me a lot of hope. I desperately needed hope at that time, and he came through for me in a big way.

Because I'm a little nervous, I looked over the next IFSP report from just six months ago. It seems I don't have much to fear.

Our goals included playing with toys appropriately (check), increased independence in eating with a utensil (piece of cake), interacting more with peers and tolerating noisier, busier environments (hoo-RAH), standing and walking with flat feet/walking with one hand held (yup), fitting objects into defined spaces/using pincer grasp/placing rings on a tower/scribbling (checkedy check check), following one-step directions without gestural cues (affirmative), pointing to named objects (of course), calling people by name (roger that), and asking for what he wants (heck, yeah).

I hate watching my kid struggle. There are gigantic obstacles he is facing physically and mentally. We now have some really great days and some really crappy ones. However, more importantly, he is consistently and genuinely Erik through them all -- loving, sensitive, and hilarious. He always has been, even that day we sat in front of a two-way mirror, unknowingly taking the first step of a very long journey together as a family.

His scores were abysmal, but his personality was still quite apparent, even on the printed report we received in the mail days later.

Erik is adaptable, social, happy, and overall good natured, imitative, independent, and interested in other people. He has a wonderful sense of humor.

Yup. That's my boy.