Tuesday, April 24, 2007

Wash Your Mouth Out

How do offensive words become part of our general conversations? What is the process for a word like bitch or whore to move from something only whispered or shouted in anger to something that teenage girls use to affectionately address each other? Are the words said enough times that their shock value is diminished? Is that what has also happened with the word ‘retard’ or ‘retarded’?

Not a day goes by that I don’t hear or see the word ‘retarded’ used to describe a person (often not a person with any sort of cognitive disability) or an act that a person is performing (“that is so retarded.”). Why doesn’t that bother everyone else as much as it bothers me? I can visit almost any teenager’s Myspace.com page and somewhere on that page find the word ‘retarded’. I’ve been to several movies recently where that word was tossed around like rice thrown at the end of a wedding. Do people not feel that using the word ‘retard’ is every bit as hateful as using the word ‘nigger’? And how did the word find its way into popular jargon anyway?

It’s not just teenagers I hear using the word ‘retard’. I hear their parents and their younger brothers and sisters sprinkling their daily, general conversations with it. It offends me – it hurts me – it angers me. If I hear the word coming out of anyone’s mouth, I will be compelled to share my views with them. If I hear the word used in a movie or TV show, you can bet I will be contacting the creators of that media. I really don’t need to fight anymore battles right now, but I cannot, will not, tolerate the use of that hateful word – spoken innocently or not.

Friday, April 20, 2007

Mother Knows Best

Ashley learned her ABCs, both uppercase and lowercase, in first grade. By the start of the second grade, she was reading 10 sight words in large print. Also at the beginning of second grade, I asked her teacher and staff to begin working on Braille with Ashley. They refused, stating that Ashley didn’t have the cognitive ability to learn Braille.

Ashley is now in 6th grade. Her vision teacher is young, inspired, and not yet hampered by the organizational culture of our school district. She began working with Ashley on Braille again this year, and lo and behold, Ashley is ‘getting it’, in the words of the vision teacher. The teacher is so excited and so convinced that Ashley will be able to master Braille that she wants to continue working this summer, after the school year ends, with Ashley.

Would it be immature of me to contact those early teachers and school administrators and say “I told you so…”.

Tuesday, April 17, 2007

Shattering the Security

I worry constantly about my children with disabilities. The worry never goes away, and it encompasses everything about their lives – Are they eating enough of the right foods? Is that wheezing I hear? Is their school IEP being followed? What will happen to them when I am no longer around to care for them? For my child without disabilities, the worry is not as all-encompassing. Of course, I still worry, but the worry is more about the bigger issues – drug use, unsafe sex, college choices, etc. I have confidence in my non-disabled child’s abilities to make good choices, to understand what is going on around him, and to always be aware of danger. But, that may have all changed yesterday because of the tragedy at Virginia Tech.

Virginia Tech is in Blacksburg, Virginia, a small community built around a large university. Situated between mountains of the Blue Ridge, the atmosphere in that area is one of belonging to a very large family. I have many colleagues and friends at the university, and Blacksburg is a place I have chosen many times for a respite getaway. It came as no surprise when my 16 year old son expressed interest in attending Virginia Tech. In fact, I have considered moving the entire family to that area because of its reputation as an inclusive community for people with disabilities.

That sense of family and security was shattered yesterday when a student from Virginia Tech opened fire and killed 32 innocent people. I know that similar incidents have happened in other locations, but they have not had the exact same impact on me emotionally as what happened in Blacksburg. Perhaps it is because I have walked the paths around campus that the shooter also walked. Maybe it is my familiarity with the buildings and the general area of the massacre. Or perhaps it is because Blacksburg always seemed a home away from home for me for many, many years. I now find myself reluctant for my son to pursue attending Virginia Tech.

I know I need to be realistic. I cannot protect any of my children all the time for all their lives. I know there is no way to completely secure a university, and even if there was, I’m not sure I would want my son to attend college feeling locked in a cage. My sense of security was challenged yesterday, but I cannot let that destroy my hope and expectations for my son. He needs to experience life just as I have had the chance to experience life, taking both the good and the bad, the risks and the certainties.

It’s times like these that I wish my mother was still alive. I would ask her how she survived the letting go, how she set the worry aside long enough to let me find my own way in life, how she balanced the fear with the encouragement.

Saturday, April 14, 2007

Touch, Smell and Lick

How do you choose which foods you want to eat and which you prefer not to even try? For me, appearance is key. I would be much less likely to eat blue-tinted mashed potatoes than creamy white ones with a square of melting butter in the center. A plate of separate servings of meat, starch and vegetables would be my choice over a brown casserole unless, of course, enticing aromas emanated from that casserole. Ashley’s technique, like many children with sensory impairments, is the ‘Touch, Smell and Lick’ technique.

Ashley’s favorite foods did not become favorites merely because I told her how delicious they were. She is a hard sell. Even if you can get her to try something new, and it initially passes the ‘Touch, Smell and Lick’ test, she still may have to slowly get used to it before it has a chance of becoming a favorite. Yesterday, a dill pickle spear was put in front of her. She surprised me by picking it up because cold, slimy things are usually discounted as inedible from the get-go. But, she did pick it up and didn’t seem repulsed. She then held it under her nose and smelled it while turning it over and over. Apparently it passed the smell test because she then licked it. Unfortunately, the pickle failed the lick test. It was immediately dropped to the floor, and Ashley signed ‘chew’ to the dog. (Fortunately, I was able to grab the pickle off the floor before the dog, who has a delicate digestive system, was able to get it).

Ashley spent 8 years in feeding therapy because when I first adopted her she wouldn’t eat anything by mouth. All her nutrition came via a G-tube in her stomach. She has come a long, long way as evidenced by the list of foods which have passed the Touch, Smell and Lick test:

Macaroni and cheese
Raw spinach
LaSuer baby peas
Grilled cheese sandwiches
Mashed potatoes from Ukrops
Chicken nuggets
Strawberry or cinnamon applesauce
Anything cheese
Scrambled eggs
Toast with butter
Yoplait vanilla yogurt
Chicken salad
Crackers and cheese
Any Little Debbie product
Cream of broccoli soup
Mozzarella cheese sticks with marinara sauce

At least there are a few vegetables and fruits on the list!!

Wednesday, April 11, 2007

"But I'm a good person..."

Until the great mass of the people shall be filled with the sense of responsibility for each other's welfare, social justice can never be attained.

Helen Keller

On April 4th, Don Imus, radio talk show host on CBS radio and MSNBC made some very distasteful, racist comments about the Rutgers women’s basketball team. The outrage was immediate. The African American community, from the highest profile to the relatively unknown, has spoken strongly and is demanding Mr. Imus’s termination. While I agree wholeheartedly with the outrage, it did make me pause and wonder if the response would have been similar had Mr. Imus made derogatory comments about a person with a disability.

Would the community as a whole have expressed outrage? Would the Today Show have allocated 30-40 minutes for the last three days to discuss the issue with community leaders? Would the Imus Show sponsors – Proctor and Gamble, Staples Inc. and Bigelow Teas - be pulling their advertising had Mr. Imus said something about children with Down Syndrome, for example? Or would the only people raising their voices in outrage been disability rights advocates?

Mr. Imus has apologized for his comments but reminds his critics that he is not a bad person. In fact, he said he has had countless minority children as guests at his cattle ranch and camp in New Mexico. His show has also been a platform for another of his so-called philanthropic causes – autism research advocacy.

So, it seems Mr. Imus feels that his dedication to minorities should allow his some leeway in his racist comments. Perhaps soon, if Mr. Imus is allowed to keep his job, we will begin hearing comments about people with disabilities.

If that happens, I truly hope the public outrage and response is as commanding as it has been this past week.

Monday, April 9, 2007

Send in the Calvary!

A few weeks ago I wrote about how draining it is to constantly have to fight for the rights of our children with disabilities. The battles are, of course, worth every effort we expend. But sometimes, we need reinforcements sent in, and those reinforcements usually come in the way of other people who share our daily struggles. Like an AA meeting for an alcoholic, we parents of children with disabilities like to stand with others like ourselves, state our name, and share our challenges and successes. We need to know we are not alone and are not as crazy as some of the disability-unfamiliar would have us believe. Fortunately this past Saturday evening, at a time when I was finding myself really in need of reinforcements, they arrived!

I met Nawaka, the Missus, Crazyj8, and Rush for dinner. They are my internet forum buddies, people like me who have and/or support children with disabilities. We have shared our battle stories, our strategies and our celebrations for over four years now. We know each other’s children almost as well as we know our own. We write (and sometimes speak) in internet-speak, but the emotions are as real as life itself.

Through hours-long IEP meetings, mediation, due process and day-to-day battles, my forum friends have been there. We share the good as well as the not-so-good, and when I need to vent, I know I have a place to do that and people who will understand. And when I needed a night out, they also rose to that challenge!

So, thank you Rush, Nawaka, the Missus, CrazyJ8, and our members who couldn’t be there – Leosson, Silvio, Mashere and Snow. My life and the lives of my special children are better because of each and every one of you!

Tuesday, April 3, 2007

Front Porch Biology

Mother Nature left a biology lesson on our front porch this week, and I decided it was time to discuss the birds and the bees with Ashley – well, at least the birds.

A house sparrow built a nest in a grape vine wreath that hangs on the brick wall of my front porch. I kept noticing that every time I opened the front door, a bird would quickly dash away. I checked the wreath and found a nest and three little blue-tinged eggs. After going back into the house, and waiting a few minutes, the mother bird returned to her nest and settled her round little body over the eggs. She was followed by the father sparrow who served a small morsel of food to her. I was so excited that I went immediately to get Ashley.

The first thing Ashley and I did was to get her children’s encyclopedia and look up birds. We found a great picture of a bird beside a nest of eggs, a perfect prelude to our trip to the front porch. After discussing the pictures in the encyclopedia, I signed to Ashley that we were going to see a real bird and nest. She was very excited!

As Ashley and I walked to the front door, I kept signing ‘quiet’ and ‘sshhh’. She was so cute – she was almost tiptoeing! We very quietly opened the front door and stepped onto the porch. Quiet is not something Ashley does often, so this was quite an accomplishment. We were actually able to get very close to the wreath, close enough that I think Ashley could see the mother bird. She was so excited at that moment that she let out a little squeal and the mother bird flew away from her nest. Ashley was surprised and looked at me almost like she had done something wrong. I signed that all was ok and that we were now going to look at the eggs.

I helped Ash step up on the bench we have on the front porch, and she peered into the center of the wreath to see the eggs. She smiled and signed ‘egg’ over and over. She then showed me the sign for ‘3’, the number of eggs in the nest, followed by the sign for ‘blue’. As I helped her down from the bench, I told her that we needed to go back inside so the mother bird could come back to her nest.

After standing quietly just inside the front door, the mother bird returned in less than a minute. I told Ash we needed to let the mother stay with her eggs a while, and she immediately went back to her book and looked at the bird picture some more. When I sat down next to her, she signed ‘thank you’.

The lesson and my day were complete…

Sunday, April 1, 2007

The Best Birthday Present - Friendship

Miles and Allyson made me so happy today. They came to Ashley’s birthday party – and they really wanted to come to her party. Miles is in the 7th grade at Ashley’s school. He is a talented singer and is in the choral group at the school. He was also recently in a wonderful musical production at school – Fiddler on the Roof, Jr. Miles is a very special kid. If you go to the first entry I wrote for this blog, you may read more about Miles. He is Ashley’s dancing partner and he is her friend – by choice.

Allyson is the 8th grade SCA president at Ashley’s school. She is beautiful and special and I’m sure, has a very bright future ahead of her. She is a peer helper in Ashley’s special education classroom, and like Miles, wanted to come to Ashley’s party. Allyson really seems to enjoy Ashley’s company and has learned a lot about her. That was very evident when she walked into the party with a Sponge Bob balloon and a pink tiara for Ash – both perfect gifts!

In a world where many people – both children and adults – just stare at Ashley and even seem frightened by her differences, to have two children embrace Ashley’s differences and welcome her into their world gives me hope for the future.

Thank you, Miles and Allyson! And a very special thanks to their parents also. You have raised children who are making and who will continue to make an important difference in this world!