Shabby Miss Jenn

Monday, May 16, 2011

I'm Sensitive

I'm about to go somewhere I've yet to go on my blog. I'm a little hesitant to do so because I don't want to mess up the carefully crafted balance. But, I feel the need to share because this situation really hurt my heart. It has to do with Wade and school. Please know that we have had a pretty decent experience this year. I LOVE the school that Wade attends. The halls are bright and cheerful, and the staff are amazing. Teachers and other staff members who don't necessarily "teach" Wade interact with him and call him by name. I have never once worried about his health, safety or well being. Wade absolutely beams when we get to his classroom, so I know he feels loved. So please don't read this thinking that I dislike anyone at the school. I don't. But sometimes when you're fighting so hard for what you think is best for your child, feelings get hurt, and people take things personally. It's nothing personal against anyone. I promise.

For almost a week now, I have not been able to get the lyrics to "I'm Sensitive" by Jewel out of my head.

Without going into too much back story, we are in the midst of completing an assistive technology evaluation for Wade so that we will all better understand what supplementary aids and services he needs to help him throughout his day. This ranges from positioning, to accessibility, to motor skills, to vision... I could go on and on. Basically, we need to find out what Wade needs to help him be the best that he can be. Whether he's playing on the playground or doing work in the classroom. Assistive technology can be something as simple as a grip for crayons and markers so that they're easier to hold to something as complex as a $10,000+ communication device.

Unfortunately, the first assessment that was done did not look at all of these areas. It was basically just a report stating that Wade needed an iPad for communication. Included with the report were new goals and objectives for the next year. I'll spare the details, but I'll just say that Wade has already "mastered" the proposed goals and objectives. What that told me was that no one really knows what Wade is capable of doing because of his physical limitations and lack of access. During that ARD meeting (IEP meeting for non-Texans), we decided on a new plan of attack. A new AT eval was recommended, along with some other assessments so that we could have a baseline of Wade's present levels of performance. It was agreed that we would not be using the assessments for formal scores and that the information gathered would not have to follow testing protocol. Meaning that Wade could answer questions and show knowledge any way possible--with his iPad, with pictures, symbols, yes/no choices, etc.

I'm a pretty sensible person. I've shed a lot of tears in our four year journey, but I think I'm pretty realistic about Wade's abilities. I don't live in denial, but I do have hopes and dreams about what Wade is going to accomplish. I try desperately to concentrate on the positives. No, he doesn't walk using his legs, but he's learning to operate his power wheelchair. He doesn't use his hands to activate the iPad, but he's pretty darn accurate using his forehead and nose. He doesn't always greet everyone with his version of "Hi," but he certainly lights up a room with a loving smile when you walk in. If I focused on everything he "doesn't" do, we'd never be able to leave the house. I guess that's why I was so blindsided when I received the Developmental Profile 3 in Wade's backpack last week. This is a tool to screen for developmental delays. (Which, for the record, we already know he has!!!) Here's a look at the questions that I was to answer "yes" or "no" to.






I got to the third set of questions and just started to cry. Then I got mad. It was a slap in the face to see these words in black and white glaring at me. In my opinion, it was a completely unnecessary assessment to send home. We all know just by looking at Wade that the answer to the majority of the questions are going to be "no". Again, we're not looking for formal scores here. We're trying to see what Wade knows and doesn't know and how to find out what he needs to help him access his environment. What information can possibly be gained from this assessment??? After I got over my sadness and anger, I composed an email asking this question and then requested that it be omitted from the evaluation. In response, I was told that they use the tool to get "additional academic information" but "it's not necessary for the particular assessment that we are doing with Wade". Really??? Then why send it home?

"So please be careful with me. I'm sensitive and I'd like to stay that way."~Jewel

*I'd also like to reference back to this post. I think it speaks volumes.

Tuesday, May 3, 2011

The Power of Emotions

Over the past week or so, my emotions have gotten the best of me in a few situations in regards to Wade, the fight for his education, and disability awareness in general. On a yahoo board I frequent, I was seeing way too many messages that made me angry. Not angry at what the parents were writing, but angry that we're even having to have these discussions. I decided to post a message on the board, and I'm sharing it here as well because there are a few articles I linked to that I really like.

I have been really sad for the past few days. I read a lot of these posts about "proving intelligence" and placement in schools and socialization and communication and... Sometimes I don't know whether to scream or cry. I go back and forth between anger and frustration and sadness. My emotions are NOT directed at anyone here on the group. We all have our own experiences which guide us and shape us. I am not judging anyone's decisions, as I know we all do what we think is in the best interest of our children. But to put it mildly, I'm pissed off at the system. Angry that we have to fight for our children to be included in something that is their God given right--to be part of society.  Angry that at age 3, my son knows what segregation is. Angry that something that should be as easy as going to school isn't because some people don't think he's "good enough" because he has a disability.

So, instead of responding to all of the posts separately, I just thought I'd throw out a few articles/books that have convicted me over the past few years.  Because as much as I hate to say it, I was one of those people who could be easily convinced that these "special" kids needed to be protected in a small little environment. After teaching in a self-contained special ed classroom, my views slowly started changing. After having my son, they started changing even more. And once more, now that he's in school, my views are changing still.  It's a never ending process of growing and learning.

The first article is titled "Why Inclusion Begins in Kindergarten...Or Doesn't".  It is written by Charlene Comstock-Galaghan. She changed my life a little over two years ago when she came to TX to lead a discussion on the documentary "Including Samuel". (A must see, by the way!) She's my inclusion guru, and I love her! You can get it by clicking on this link and choosing the article under "Education".

The next one is called "Outing the Prejudice: Making the Least Dangerous Assumption". You can find it here.  Our kids have differences, not deficiencies, and shouldn't we assume that all things are possible instead of assuming that they couldn't possibly do something because a doctor or teacher or friend told us they couldn't? If we pushed all these assumptions to the side and got over OUR fears--not our kids' fears--what could we accomplish? I didn't want to put Wade in school this year because I know all too well what goes on behind closed doors in special ed. But I had to get over MY fears in order for him to blossom and show everyone what he is made of. I can't keep him at home until I "get him ready" for school or until he "gets over" some of his "issues" with noise or commotion or until he learns how to communicate "better". I have to give him every opportunity to succeed or not succeed without standing in his way. It's dignity of risk. There's dignity in him trying something and maybe not succeeding. At least he was given the opportunity to make the choice on his own. There's a good article "Weighing theBenefits, There IS Dignity in Risk" here under "Awareness".

A dear friend who also has a child with a disability gave me a book to read, Out of My Mind by Susan Draper. It is a fictional book written for middle school aged children, so it is a very easy read. Although it is easy to read, it is still very powerful. It is about a girl with CP who is in a wheelchair and is non-verbal. It is written from her perspective. After reading the book, I truly do not look at Wade the same way. For me, communication is the most important thing. If Wade couldn't communicate with me, my world would crumble. Not to mention how trapped and frustrated he would be if I couldn't access his sweet soul. I knew that before reading this book, but the book challenged me to dig deeper and find out more.

Anyway, those are my thoughts. And for the record, no where in IDEA Law does it say that we have to prove our children's intellect in order for them to be given the opportunity to have access to the same education as everyone else. (I realize that wasn't the intent of the post, but there seems to be a lot of misunderstanding of the law because of what school districts "get away with" telling parents.) They have the right to be in the same classroom as everyone else because they were born!

Thankfully, some of my anger has subsided this week.  I don't think it's healthy to stay in a state of anger, but I do believe that anger can be beneficial when directed in a positive way.  I hope you can gain some insight from the above articles and that they speak to you and convict you of some things as much as they did me.  If anyone is interested in seeing "Including Samuel",  I have a copy you can borrow.  Or better yet, purchase your copy here.  It's well worth the 25 bucks!