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.
On not being a brave special needs parent
4 hours ago