Friday, June 29, 2007

Dan the Man

Once upon a time, a man named Dan Wilkins started designing t-shirts, bumper stickers, and such. He also started writing and sharing his very enlightened views about our disability culture. I have bought many of his shirts over the years, and even had him design some special shirts. Today I thought I would share some of his work with you. I encourage everyone to consider ordering from his website ( If nothing else, the looks you get while wearing his shirts will be priceless!!

Wednesday, June 27, 2007

Thankful Thursday

This Thursday, I am very thankful for:

  • A summer without brain surgery

  • Big golf umbrellas even though I am not a golfer

  • Summer sandwiches with a thick slice of a tomato straight from my garden

  • Knowing my friend Sharon has found her prince after enduring many frogs

  • Thunderstorms, and my home generator

  • My very cool, air-conditioned office

  • Being able to paint the walls in my house any color I want

  • Sleeping three hours straight last night

  • Having a reserved parking space less than a block from my office

  • The fact that my family sits down to dinner together EVERY night

Tuesday, June 26, 2007

Listen To Me

Being able to communicate is, in my opinion, a basic human function. Everyone needs to be able to let others know if they need help, if they are in pain, if something frightens them, if they want or don’t want something, if they want company or if they just want to be left alone. But communication should go further than just basic needs and desires. Sharing a conversation, sharing joy and sorrow, having a sounding board for a problem, or just having the ability to complain are important avenues for interaction with others.

Even though Ashley’s doctors told me when I adopted her that she would never be able to talk or communicate, they were so wrong. Even though her teachers and other school staff told me she would never be able to understand and use sign language, they too were so wrong. With very intensive supports and therapies, and with loving and committed caregivers, Ashley has turned into quite a communicator. But I saw some folks yesterday who had not been given the supports that Ashley has, and as a result I never witnessed any interaction in the three hour time period I was around these folks.

Ashley, Corey, Chip, Amy and I went to a baseball game yesterday. Ashley was in her wheel chair because the steps are a bit too steep for her, and because we wanted the ‘good’ seats that are reserved for people with disabilities. Parked beside Ashley were five adults in their wheelchairs, adults with very significant physical disabilities. Their chairs were pushed into position by an adult man and woman – people I believe were staff at the institution in which the folks lived. That was all the interaction there was until three hours later, and the same adult man and woman, unlocked the wheelchairs and began returning the five folks to their waiting van.

Why couldn’t the staff members speak to the adults? Why didn’t the staff ever offer a drink or food – they (the staff) made sure that they had something to drink and eat themselves. Why couldn’t there be conversation about the game or the goings-on in the stadium? Why were the folks never asked if they were too warm and wanted to be moved into the shade? Why didn’t the staff ask if they were enjoying the game?

Each of the five adults had to potential for communication, even though none of them were probably capable of speech. Four of the five had fine motor ability in at least one of their hands, and could have operated a communication board. The other person had a very definite eye gaze (easily witnessed as he watched each attractive woman walk up and down the stairs). And eye gaze can also be used with a communication board. How did these five people get to be in their 30’s, 40’s and 50’s without someone recognizing this need for communication?

These five people were, of course, communicating, but no one took the time to notice or build on the communication. They were communicating boredom, despair and dejection. When the chair of one of the older women was pulled back to leave the game, the woman squealed very loudly. She was communicating. The older man who fell asleep during the 5th inning of the game was communicating. And the 30ish year old man who ate an entire box of cookies during the game was also communicating.

When discussing the rights of people with disabilities, the right to communicate should not be overlooked. Curb cuts for wheelchairs are a great thing – sharing a smile and a sentence is even greater.

Saturday, June 23, 2007

A Summer Without Brain Surgery

Ashley had an appointment with the neurosurgeon on Friday. Since finding out on Wednesday night that she had two brain tumors, everyone has been on edge – imagining what could be, what impact it would have, how we would all cope. Amy and I tried to talk about anything but the tumors, almost as if we didn’t talk about them, they would go away. While we wanted an explanation for Ashley’s increased seizures, this was not the explanation we meant.

The speed at which things moved once I was notified about the tumors only contributed to the anxiety. Never have I been able to get an appointment with a specialist in less than a month. The waiting lists for these scarce doctors are usually months long. But, I called the neurosurgeon’s office on Thursday morning, and our appointment was made for Friday morning. Neither Ashley nor I slept much Thursday night.

After fighting the construction and traffic to find a parking place at the Medical College of Virginia (MCV), Amy helped Ashley and me find the neurosurgeon’s office. Registration went smoothly and quickly, and everyone was very nice – a niceness I interpreted in my highly anxious state as pity. After a short wait in the examining room, the neurosurgeon entered, still in his surgical garb. He introduced himself and immediately went to reviewing the MRI images. He shuffled through them quickly, lingering on a few, and then stood up and said he would be back. As with everything else involved with this visit, I interpreted that to be a negative sign. I imagined him calling the operating room and telling them to start prepping for brain surgery.

He was gone quite a while, time I later found out during which he was trying to contact the neurologist, the person who had discovered the tumors. Unable to reach the neurologist, the neurosurgeon returned. He said he wasn’t sure that the tumors were the cause of Ashley’s increased seizures, and that he was reluctant to remove them with everyone thinking the seizures would cease after surgery. He said the tumors did need to be removed but that they did not appear to be cancerous – the first really positive thing I had heard since Wednesday night. I sighed deeply and began to relax just a bit. His game plan was to caucus with the neurologist and another ‘brain expert’ at MCV. He said if they could convince him the tumors were the cause of the seizures, he would recommend immediate surgery. If they could not convince him, he would prefer to wait three months, do another MRI, and then more than likely, go ahead and schedule the surgery. His lack of immediate need to remove the tumors went even further to help me relax a bit more. We all left MCV and went home feeling a tad bit better.

It was just a couple more hours until I heard again from the neurosurgeon. His caucus had happened and the consensus was that we could wait three months. So, although my concern about the tumors is still great, and although brain surgery is in the near future, we have the summer. Our family can enjoy all the vacations and summer activities we had planned, and perhaps enjoy them even more because we know what lies ahead. I’m sure my anxiety and concern will skyrocket again as September approaches, but for now, bring on the cookouts, the beach, the baseball games, and the swimming pools. As my friend Jane so wisely pointed out, “Having brain tumors is bad but having a summer without brain surgery is priceless. “

Wednesday, June 20, 2007

Thankful Thursday

It's difficult for me to find my thankful thoughts today because I received word from Ashley’s neurologist last night that her MRI has revealed two new brain tumors. She has had two brain tumors in the past, both benign, but both very scary. So today my list of things I am thankful for is dedicated to my beautiful daughter. I would very much appreciate everyone keeping her in their prayers.

Today I am thankful for:

  • Ashley’s infectious giggle

  • Her sweet voice saying ‘MOM’

  • The way she curls up like a lima bean when she sleeps

  • The way she invents signs when a sign for something doesn’t exist – Cheetos, for example

  • The way she very gently places her hand on my cheeks to turn my face towards hers

  • The joy she finds in bubbles

  • Her obsession with girly clothes

  • The way she signs ‘thank you’ whenever someone does something nice for her

  • Her drive and persistence to learn and experience new things

  • Hearing her say “I luh” (I love you) to all the special people in her life

I love you, my dear Ashley.

In nomine Patris et fillii et Spiritus Sancti

I’ve been trying for 10 years to find a church that would welcome my family. I know it sounds odd that I haven’t had any luck in those 10 years, but it’s true. It sounds really odd to me also.

I was raised in the Catholic Church. Friday night brought fish for dinner, and Sunday mornings meant church. As my teenage years approached, the Catholic Church approved conducting mass on Saturday nights, and my parents switched to that so we could sleep in on Sundays. While I probably grumbled about having to attend mass, I know I found a comfort in it – a realization that there were forces greater than myself, forces I could turn to in times of distress. That comfort has accompanied me through the many tribulations of my life, and is a peace that I continually still turn towards. Sadness overwhelms me, however, that I have not brought my children to that same peace and comfort.

I’ve visited Catholic churches, Baptist churches, Presbyterian churches, non-denominational churches, and several others without labels. The visits have played out the same regardless of the doctrine of the church. We arrive as a family – two children in wheelchairs, two walking. Jessica is friendly and outgoing but doesn’t understand that exuberance does not always have a place in a house of worship. Corey drums his ADHD-inspired head beat on the backs of pews or benches, bringing looks from the other church-goers of “Can’t you control that child?” Ashley is just Ashley – loudly vocal, fidgeting on the scale of Paul Bunyan, and with an overwhelming curiosity that leads her to touch, taste, and otherwise examine every surface around her. I can usually count on about 5 minutes before one of the “proper” church-goers turns to me and suggests I take the children to the nursery. But, there’s a problem with that also.

Nurseries are for babies and very young children. My children are teenagers. While Jessica would be very happy to interact with 4 year olds, my attempts to instruct her in ways appropriate to her age would be undermined. Put Ashley in a room with toddlers, and in no time one of the young children would be hurt because Ashley is the size of an adult and is blind. She can’t see the small children standing in front of her as she mows them down. And like Jessica, Ashley needs to be with her peers.

The next suggestion I usually hear is Sunday school. Oh, how I would love for all my children to attend Sunday school. But until I find a church where someone can both communicate in sign language with Ashley and assist her with orientation and mobility, not to mention helping both her and Jessica with activities of daily living (eating, toileting, etc), Sunday school is not really an option.

So there’s the rub – my children are not wanted in the church during service – they are not wanted or cannnot be accommodated outside the service – and I can’t leave some of them home and take the others. I refuse to believe however that a church that can accommodate us as a family doesn’t exist. I am, though, very tired of looking. My children have experienced enough rejection in their lives and should not have to experience it in a church of so-called Christian people. While I would really like to hear from other parents like me who have solved this problem, for the time being we will be worshipping in solitude. And, I hope I can provide enough of an example for all my children that they, too, will find the comfort that I have found in God.

Monday, June 18, 2007

The Other Story from a "Pillow Angel"

I have written twice before about a young girl named Ashley from Seattle (A Tale of Two Ashleys, A Tale of Two Ashley's - Continued). I didn't think I could be outraged any further than I had after reading about Seattle Ashley and the brutality she experienced at her parents' hands. But, my outrage has grown even deeper after reading this article from the Seattle Post Intelligencer written June 15, 2007 by another 'pillow angel'. (Please pay special attention to the fact that I said "WRITTEN" by another pillow angel)

In my January 13, 2007 blog post, I said I would gladly take Seattle Ashley into my home and raise her to be the woman she is meant to be. I stand by that offer, especially after reading the above referenced article. The following profound quote from the author says it all...

No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.

Could we get that statement tattooed on the forehead of every educator in the United States?

Sunday, June 17, 2007

Eeeyore Has Left The Building

My 14 year old son is an Eeeyore. He is gloomy, slow-talking, and moves at a snail’s pace. He is a glass half empty person and sees the bad in any situation. It’s difficult to convince him that there might be good. I’m sure this life approach comes from his early years, and I wonder if anything can change his views. Will it be possible for him to ever accept that his life can have a positive outcome, or will he be forever chained to the misery of his past? With each passing day I am becoming more convinced, against all my hopes and dreams for him, that his persona, his psyche is now fixed. The problem with all this comes in his interaction with the rest of the family.

Corey left today to spend a week with his grandparents. I don’t think they really wanted him to visit, but my pleas for a break from parenting this difficult child must have worked. The grandparents’ lives got infinitely better the day they convinced me to take this child into my home. Although I feel they misrepresented both him and their position, the die is now cast and I refuse to disrupt Corey’s life anymore. Although he has openly shared how much he doesn’t like living with us, we are at the moment his only chance. His grandparents have told him he cannot come live with them. His aunt and uncle, who coincidentally live only 5 miles from us, refuse to let him live with them, and even refuse visits more than once or twice a year. It’s no wonder this child is an Eeeyore. Even though I understand all this, Eeeyores bring me down, and down is not where I need to be.

I have a lot of challenges in my life, and I do not in any way intend that statement to be negative. But, to be able to face those challenges, I need an upbeat energy, a positive outlook, and a belief that the challenges can be successfully met. My Eeeyore makes that difficult. He’s only been gone on his visit for about 8 hours now and I feel a lightness, a lifting of a burden from my shoulders. I believe my other kids feel it also. Everyone seemed happier this afternoon. There was joking and smiling – no eye rolling or deep sighs of frustration. There was agreement on family activities and planning on what was going to happen the rest of the week while Corey was gone. It’s sad that we feel this way, but for this week, we are going to enjoy this lightness.

I won’t ever give up on helping Corey find lightness himself. I want him to experience the joy of living and not dreading every day. I want him to believe in himself and to trust in others. I don’t want him to forget his past, but I don’t want it to shape his future either. I really hope one day my Eeeyore will leave his gloomy donkey ways behind and become a Tigger, bouncing happily through life.

Friday, June 15, 2007

The Path From Hell is Paved with MRI Images

As I shared back in May, Ashley has had some not-so-positive experiences with one of our local hospitals. However, yesterday at that same hospital that in the past has seemed like the burning pit of hell, things went well, very well. And, the same way I felt compelled to share the negative, I now feel compelled to share the positive.

Ashley was scheduled for an MRI under anesthesia yesterday. She has been having many seizures each day, and the docs have not been able to figure out why. Up until the last six months, her seizures were completely controlled by medication. Not so anymore. Instead of one medication that had been working, she is now on three medications which are not working. The seizures have been coming at the rate of 3-5 a day, some small and some not-so-small, but all very, very scary to her and everyone around her. Since she has had two brain tumors in the past, the neurologist decided an MRI was in order to check on the current state of affairs in her brain.

Wednesday afternoon, the day before the MRI, I received a phone call from the hospital letting me know we should arrive at 11am. Immediately the hair on my arms stood on end and I readied for another battle. Ashley has been so traumatized by problems at this hospital in the past, that all we need to do is pull into the parking lot and her anxiety level skyrockets. Combine that with telling her she can’t eat or drink anything from midnight the night before until early afternoon, and everyone may as well go ahead and don their attack dog training suits. I tried to remain calm with the voice on the other end of the phone and sweetly explain why we needed to be the first MRI scheduled for the day. Miraculously, the hospital staff person listened. I was still on edge though, waiting for the declaration that she was just joking, but it didn’t come. Ashley would be the first person to receive the MRI that day. Things began to look up even more when the nurse on duty said that the anesthesiologist would probably agree to give Ashley something to calm her as soon as we arrived at the hospital.

Thursday morning arrived along with reinforcements. Dear Amy would accompany Ashley and me to the hospital. It was still very early in the morning, and the lack of breakfast hadn’t quite registered with Ashley, but the pronouncement of a car ride with dancing to the bass-heavy radio music brought a smile to her face. I just hoped it wouldn’t be the last smile we saw that day.

More pleasant surprises awaited us at the MRI registration area. The staff was cordial – the area was not packed with people – kid’s books were in the magazine racks – and best of all, a TV was available that could be turned to Ashley’s favorite Nick Toon (SpongeBob). True to their word, a nurse soon arrived with some magic medicine to help Ashley relax. I was almost relaxing myself…

When it was time for Ashley to go back to the MRI room, I knew I wouldn’t be able to accompany her. I have a metal prosthesis in my left ear, and having the left side of my head stuck to the huge MRI machine was not how I wanted to spend the rest of my day. It was time for Super Amy to the rescue!! Someone had to go with Ashley until she was asleep because none of the hospital staff knew sign language. So Super Amy assumed her rightful place next to Ashley, signed everything that was going on, and even modeled the pink gas mask before trying to get Ashley to put it on. Although it was extremely difficult for Amy to watch Ashley’s eyes roll to the back of her head, she held Ashley’s hand until she knew Ashley was asleep, offering the much-needed comfort that eased the entire procedure.

Ashley made it through the MRI and into recovery in about an hour and a half. Although waking up was slower than usual because of the first magic medicine she received, as soon as Amy and I could get her from the stretcher to her wheelchair, we blew the joint and headed home. And although getting Ashley into the house on her wobbly spaghetti legs made me envision having to call the rescue squad to help us into the house, Amy, my son Chip and I were eventually able to do it. (Know anyone who builds ramps??).

Ashley was groggy for several more hours, but by mid-afternoon, walked out of her bedroom and signed EAT, EAT, EAT. We knew then that our Ashley was back!

I didn’t have one complaint about how things went at the hospital. Everyone was professional and caring and went out of their way to accommodate Ashley. This was a hospital experience like I believed it should always be. Now if we could just get the emergency room staff to take a few lessons from the MRI unit….

Wednesday, June 13, 2007

Thankful Thursday

Another Thursday - another 10 things for which I am thankful...

  1. Converse Hi-Top tennis shoes - the only shoes Ashley has worn from the day I adopted her 10.5 years ago

  2. Geraniums

  3. The two thunderstorms we had this week which brought much-needed rain to my vegetable garden.

  4. Friends like Lynnette and her beautiful daughter, Brooke

  5. Anything chocolate

  6. Slightly cheaper gasoline this week

  7. TV remote controls

  8. The end of this school year!!

  9. Weekends

  10. My son Chip's ability to fix anything electronic

Tuesday, June 12, 2007

My Angry Face

As a parent who has to attend many IEP (Individualized Educational Program) meetings, I am constantly advised to remain calm – be professional and assertive, not aggressive. In fact, I advise many of the families with whom I work to do exactly the same thing, telling them that collaboration is the preferred method for obtaining results for our children’s educational programs. That’s such difficult advice to follow though when the school members of the IEP teams laugh at your suggestions, ignore you completely, or send out the message that you are “just a parent”. Disagreements often turn into major battles, lawyers are summoned, and litigation further delays our children receiving appropriate services. Just how can a parent remain calm and professional under those circumstances? Well, maybe we shouldn’t.

Check out this article from MSNBC that suggests getting angry can actually make us more analytical and better decision makers - .

So, while collaboration may still be the preferred route, for those of us who sometimes find ourselves in situations where collaboration just isn’t working, maybe we need to pull out our angry faces...

Saturday, June 9, 2007

Four Year Meme

My friend, Allie, at A Day in the Life of the Whittinghams, tagged me with this meme. Of course, I don't really know what a meme is, but I think I am supposed to consider the subject she presented and write my thoughts. Thanks Allie, and I hope I did this correctly!

Four things I have learned over the past 4 years:

  1. I’ve learned that people really are interested in Ashley’s story. Jonathan Mooney included a chapter about Ashley in his new book and everyone who reads it says their life has changed. From the day I adopted her, I believed she had a message that the world needed to hear, and I think the time for spreading that message has arrived. The world needs to know how Ashley became the person she is – from the abuse of alcohol by her birth mother during her pregnancy, to her short time in the foster care system, to the way a life can be enriched when the right interventions and supports are put in place. Ashley’s story is the story of a miracle, but a miracle that can easily be recreated in the lives of others like her. Families and individuals need to know that, and Ashley and I will help them get there.

  2. I’ve learned that many people in our educational systems don’t have the heart for the job they are tasked with doing. Perhaps they had the proper calling in the beginning, but over time and with guidance from senior employees already jaded, they give up on their dreams of making a difference in the lives of children. Numbers become more important than faces, minds and lives.

  3. And like our educational systems, I’ve learned that other bureaucratic organizations whose mission is to support people with disabilities lose their focus due to organizational cultures, budgets, and pressure from law makers. To these organizations, an individual is nothing more than a number and care must be taken to not set a precedent that would open up services to all the numbers. The conundrum is that these organizations will spend inordinate amounts of money to deny supports when the actual support, even if a precedent is set, would probably cost less.

  4. And I have learned that I am stronger than I ever knew. Physically, the last 4 years have been tough for me. I was diagnosed with Lupus, Rheumatoid Arthritis and Non-Hodgkins Lymphoma. I have survived many medical interventions including radiation and chemo, and still continue with weekly shots and many powerful medicines. But, I have never faltered in the care of my children. I continue to fight the battles which will ensure their promising futures, and I have found the strength to help other families in similar situations.

Four things I want to try to do in the next four years:

  1. I want to write the book that has been in my head for quite a while. Jonathan Mooney is going to continue to hound me until I do!

  2. I want to learn Braille. Ashley is learning it and I feel that to support her with her reading, I need to also know it.

  3. I want to be a catalyst or at least play a role in major systems change in the realms of adoption, education, and disability rights. I am beginning to believe that systems change may only happen through litigation, but I am willing to follow that path if change will happen. I want to go an entire day without feeling anger over injustice but I want the reason for that to be that injustice doesn’t exist.

  4. I want to recommit to taking care of myself. I have the tendency to always put my needs, my health, and my well-being last in the priorities of my life. I must keep telling myself that I will be unable to achieve the other priorities if I am not healthy. I must take vacations, not feel guilty when I take a sick day, and most importantly, I must eat at least one pint of Ben and Jerry’s Chubby Hubby ice cream a month!

Friday, June 8, 2007

Child's Play - Part 2

My recent post about observing the exclusion, alienation, and what is, in my opinion, abuse of a young child with Downs Syndrome struck a chord with several folks. I heard stories very similar to mine about schools allowing such discriminatory behavior, and what was even more disturbing to me, actually denying such behavior occurred when confronted with the evidence. Here are two of the most compelling stories:

When my son was in kindergarten, in our previous district's supposedly inclusive environment, the kids "included" my son by lining up to sit on his back to ride him down the slide face first in the sand. Apparently this had been going on for most of the year. When I had called to ask why my son had sand in his ears, I was told that he was putting it in there himself. It wasn't until we had an advocate observe for a few days that we found out. The teachers actually thought this behavior was ok.

One of my students at school had Downs Syndrome. CJ didn’t actually qualify for my services due to excellent pre-K education but the teacher thought it would be wise to put him in my group to have lots of repetition. So he was cute and funny and smart, just like the other three boys from his class UNTIL about March, when they started picking on him. Then he became stupid, picked his nose, took too long, couldn’t cut with scissors, etc. I wanted to squash those three boys like the little bugs they were! I finally had the teacher hold CJ back for a few minutes and had a little come-to-Jesus with the other boys. According to them, it just took that long for them to notice the differences, and when they did he was no longer fitting into their social circles. As one of them said later, “You never yelled…before.” The teacher also got into the act and things turned around very quickly and very nicely. I can’t say WHY this stuff happens but as Barney Fife always said…NIP IT IN THE BUD.

And to top it off, I observed another situation yesterday at my high school aged son’s awards ceremony. As is typical with schools, all the special education students had their own little area in the auditorium, an area reserved just for them. It’s usually close to an exit door so that if any undesirable behavior (at least undesirable to a school staff person) is observed, the student can be quickly ushered out of the assembly. (BTW, I hear of this exact situation happening every single day in one school or another – this is NOT an isolated incident.) At this particular ceremony, the special education students were much better behaved than the other students. Not a one of them was hooting and hollering during presentations, playing kissy-grabby games with a member of the opposite sex, or rudely interrupting the speeches. Other than the regular ed students modeling inappropriate behavior for the special education students, I saw no reason the special ed students could not have been seated with their same grade peers. I’m sure though that this isolation seen during the ceremony is typical of the student’s entire school year. I heard not one, not two, but three different regular ed students who were walking past me to their seats say something about the ‘retard section’ of the auditorium. Several teachers were standing by to direct the regular ed students to their seats and not a one said anything about the comments.

So, this attitude of dehumanization and oppression starts very young, grows during a child’s school years, and is finally and firmly refined for adulthood. All this makes me sick to my stomach. So much for the HUMAN race….

Thursday, June 7, 2007

Thankful Thursday

Here is today's list for 10 things for which I am thankful...

  • The Virginia Office for Protection and Advocacy, especially Jonathan and Sophia

  • Kids like Miles, Ellie and Chip

  • Bleach

  • Living in Richmond where I am 2 hours away from the ocean and 2 hours away from the mountains

  • Amy, my Ashley’s intervener and my friend and surrogate daughter

  • Having the right to say whatever I want in my blog

  • Ashley having gone 5 days as of today without a seizure

  • Summer camps

  • Apple pie

  • My washer and dryer, both of which should really be put out of their misery, but which keep chugging along

Wednesday, June 6, 2007

Child's Play

I was in a school meeting with another parent yesterday at one of our local elementary schools. This particular elementary school was rumored to be disability-friendly – a school where children with mild to moderate disabilities would be integrated with their non-disabled peers. However, during the meeting I had an unobstructed view of the playground, and what I saw there made me wonder if the disability-friendly rumor was actually true.

I watched a class of children who appeared to be in the first or second grade make their way to the playground. A teacher was leading the group and another teacher was bringing up the rear. The children had arranged themselves for the walk into three distinct sections. The first had from six to eight children walking huddled together, laughing, roughhousing a bit, and all having a good time. The same was true for the third section – six to eight children, some skipping, some singing, all having fun. In the middle of those two groups was a single child. The child walked alone, his head hanging down. He seemed slightly shorter than most of the other children and a little on the chubby side. He shuffled along not seeming to care where he was going and not in any apparent hurry to get there. Finally he looked up at something the lead teacher had said, and I saw that he was a child with Downs Syndrome.

My attention was pulled back to the meeting I was attending, and I wasn’t able to watch the groups of children at play. But after a while, I did see them returning to their classroom. The procession was the same as the walk out – a teacher followed by a happy, laughing group of children, followed by the one child shuffling and with his eyes downcast, followed by another group of boisterous children, and ending with another teacher. It truly saddened me to see that even at such a young age, children were distancing themselves from the child with Downs Syndrome. I do not believe any person is born knowing those things or that any child at the age of 6 makes a conscious decision to avoid a person with a disability.

Where do children as young as 6 or 7 learn about alienation, prejudice and rejection? Never mind, I believe I already know the answer to that question.

Monday, June 4, 2007

Booties and Burgers

I attended a baby shower this past weekend that was a bit unconventional. The mom-to-be is a woman who worked after school with my daughter, Ashley. She is also a high school special education teacher. Dad-to-be works at the same high school and assists students with special needs find supported employment. They seem to be one of those couples who are perfectly suited for each other.

The shower was billed as a shower/cookout and was held at the couple’s home in the country, although in this case, country was only about 20 minutes from city. But, it was indeed country. The drive to their house wound past cows in the field, the Gospel Chicken House, and huge country estates with bright white fencing surrounding the property. After a series of twists and turns, I approached their driveway - a long, unpaved, washboard, bump-inducing road. The barbecue grill was going, folks were playing horseshoes and volleyball, and the mosquito-repelling lights were lit. Other than the couple themselves, and Amy who accompanied me to the shower, I knew no one there. And, it was indeed an interesting group of people.

Besides the grandparents-to-be, an older woman who had been the babysitter for the mom-to-be was there. Large families whose children had grown up with the parents-to-be were also there. The instructional assistants from the mom-to-be’s classroom were there as was a special needs bus driver. Also, several participants from Special Olympics teams which the parents-to-be coached were there. There were young children, very senior citizens, and all of us that are in between. I’m used to baby showers attended only by women, arranged by someone other than the mother-to-be, with silly little shower games played. But, the food on the grill at this shower made my mouth water, something that can’t be said for the pastel colored mints in the shapes of rattles and booties usually served at baby showers, and the tunes from the outside radio were current and fit for a party!

As I often do in settings where I know few people, I chose a seat on the periphery of the action and observed. Some of the adult Special Olympians were playing volleyball with the children and neither team seemed fazed by the height differences. Groups of ladies were sitting and discussing their own grandchildren, and several teenage girls were realizing that heels, fancy clothes and outdoor barbecues don’t really go together. One of the more interesting discussions on which I eavesdropped was between the father of the mom-to-be and several of his older, male buddies. They were discussing children born with special needs, and how these children should be considered gifts from God – not burdens. All I could wonder is why I haven’t met a man who shared the views of these incredible fathers.

While I was in my observation mode, I noticed out of the corner of my eye that one of the Special Olympians had pulled up a chair beside me. He didn’t say anything but smiled sweetly when I noticed him. He seemed to be in his mid-20’s and he was built very much like the rain-catching barrel at the corner of our host’s house. When he and I did chat, his intellectual disability, though not extreme, was obvious. What was even more obvious was that this man was flirting with me! Having not been flirted with in quite a while, I admit I was embarrassed. Fortunately, the blushing on my face was obscured by my near-heat exhaustive condition brought on by the temperature and humidity of the day. I was not embarrassed because this person with an intellectual disability was flirting with me. I was embarrassed because I was old enough to be his mother! Speaking of his mother, she had, in my opinion done a fine job of raising her son. He was polite and considerate, not only to me but to others as well. He was not obsequious or submissive as many people with disabilities can be after years of oppression. He was honestly and politely well-mannered – qualities many of us Southerners find quite charming. The time for opening baby presents arrived, and as I stood to move closer to the circle of people surrounding the mom-to-be, my admirer gallantly pulled out my chair, smiled sweetly again, and walked away.

The unconventional people at this unconventional baby shower were quietly making a huge and positive difference in the world. I was proud to have been included in this affair, and I know without a doubt that these parents-to-be will raise fine children.