Welcome to the Club

From my friend and fellow WS mother, Laura, about finding yourself the parent of a child with special needs for the very first time. I don't think I have ever read anything so beautiful or hopeful as this. I remember being literally welcomed into "The Club," and wondering exactly what that meant. I wish I had this at the beginning of it all.

Don't forget to grab the Kleenex. Click here.

The Life That's Chosen Me

Thanks to my very amazing friend Kelly, mother of beautiful Tyler, for this really touching song that says the things we would likely never dare say out loud. It's funny how sometimes you get just what you need at the moment you need it. Hopefully somebody out there might need this, too. Happy Friday.

The Tao of Nancy

I reject your reality and substitute my own.

-- Adam Savage

I'm in a strange spot spiritually these days. While the defensive numbness brought on by Erik's diagnosis continues to recede, I am suddenly able to profoundly feel many of the things I have anesthetized with trivial distractions and compartmentalizing all that occurs in my world. What worked for me before in order to shove things aside no longer is effective. It's obviously time to grow up and move on. Looking back, I see I was totally and completely numb for months at a time out of necessity. There are now many lovely things I am once again able to enjoy fully, yet there are a lot of feelings I no longer can hold back that simply hurt. This has been happening slowly over the past couple of years, but the process seems to be quickening now.

I talked to a mother whose daughter is severely mentally retarded. She told me that her experience with her child eventually brought up unresolved childhood issues of her own as she cared for her daughter. I want to talk to her more about her experiences and plan to meet with her again next month. I'm still waiting for some sort of lightbulb moment, but I find that knowledge and wisdom arrive at their own pace, no matter how badly I want to possess them. I'm still a complete novice. I'll let you know when I'm smart and wise.

Please don't hold your breath.

Importantly, I reached out to my childhood church yet again. I seem to love banging my head against a wall. I can't bring myself to post what I wrote the day it happened, as it is just too personal, but it seemed to be a positive experience. However, as I find myself searching for something within the walls of what would be considered traditional in terms of religion, I find myself eventually feeling completely forgotten. It seems we are not victims of cruel intentions but of simple bureaucracy. I find it very difficult to believe that if the traditional path is impossible for our family, we will all perish screaming in a lake of fire somewhere down the road. Sorry, but I just don't buy it. It is strange feeling closer to God than ever through Erik and yet even further away from what I grew up believing what my spiritual life would look like. I can honestly say, though, there has not been one day since Erik was born that I have ever been angry at God. My miscarriages prepared me for what would come. I knew when Erik was born that sometimes things just didn't turn out "perfect." I have arrived at a place where I am actually thankful that nature saw I did not carry those babies to term and that my body did what it was supposed to do--perfectly. By the time Erik was born, I had accepted the fact that things go haywire genetically, which took a little of the sting out of what ended up being an extremely very painful experience. I learned to adopt a more scientific outlook on a very personal subject. I know that Erik survived because he was strong enough. Even perfect enough. I am thankful for that. I will never jump for joy or consider Williams syndrome a gift but can really visualize and appreciate the blessings he has brought to my front door on a daily basis. Maybe in the end it will be a gift after all. I'm not there yet and may never be. That's okay.

Last week I once again made my feelings known to a church deacon who happeend to call our house in the role of parish leader and very innocently asked if there were any issues to pass along to our pastor.

Sigh. Here we go again.

I explained our situation once again in graphic detail to this poor woman and voiced my concern that families like us are falling through the cracks, finding themselves isolated at home. This will be the fourth or fifth time I have tried to explain our inability to simply attend a church service. In December we received an invitation to attend a Christmas service for those who were grieving and/or experienced loss. I explained that while this was appreciated, we were obviously not being heard! After my lengthy monologue, the reaction from this new deacon was promising, and I felt hopeful. Erik has now been tentatively matched up with a high school girl who may take him to Sunday school while we attend services (which, in itself, is a dream come true for my son, the ladies' man). Once again, I have my naive hopes up that we will fit in somewhere like other families do. I felt uncharacteristically optimistic about this, as it was the first time it seemed we were visualized as an exciting opportunity, not a challenging problem.

It has been days since my request, and yet another Sunday looms large ahead of us with no answer. It is hard for me to accept the fact that something as simple as attending Sunday services hinges on the desire of a teenage girl to help us out, but I suppose that's life. It would just be nice not to feel like a freak show just for one Sunday.

My new theory: Erik's hearing remains painfully sensitive while the people around me are completely deaf.

There has got to be more to this spiritual thing than putting my heart out and getting it stomped on by people who can't seem to hear me or think I should do things a certain way. If there is anything I have learned in the last three years, whomever is up there can hear me just fine from my shower or my Jeep (these seem to be the best "wireless hot spots" for me).

In closing, while my phone sits silently in its cradle, I feel like an idiot for believing this would work. If I haven't figured out that things don't work out the way I planned them by now, I'm even more dense than a freaking neutron star.

So this is it. I have poured my heart out and offered myself to others as I was raised to do, but if we get lost again, I'm done for the time being and will consider starting my own bizarre cult.

F*ck bureaucracy.

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.

Sisters

I received this from a friend in town who has a daughter with fairly extensive special needs. I am unable to determine who originally wrote it. Although I do not personally subscribe to the belief that mothers like me are hand-picked/chosen by God to care for children with special needs, I found this a comforting reminder that there are still others in this boat with me.

Enjoy.

(Update: Author Maureen K. Higgins)

Sisters

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience…experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist' s offices and NICU units, in
obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our
children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we sisters keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.