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

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 - http://www.msnbc.msn.com/id/19172819/ .

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...

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!

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….

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

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.

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.