Second Hearing Day

Today we celebrated Drew's second hearing day! Two years ago our son's cochlear implants were activated and he heard his very first sounds. To be honest, the day almost passed as usual. Every day life is just so normal, and Drew hears so well, that I sometimes forget what we went through to get to this day. In a way, that is good, but I always want to remember this day, and give thanks to those who have given our son the opportunity to hear, and learn to communicate with his family, friends and community. We are forever grateful.

As a little hearing present, Drew decided to learn how to put his ears back on himself! When they come off now, he'll pause and put the coil back on his own head. It is wonderful! And he gets so excited each time he successfully puts his ear on, and proclaims, "I did it!" He is growing up right before our eyes and it is just so wonderful to see. I am so happy that God chose me to be his Mommy. I am truly blessed.

Please Talk To Me

Last week I took Drew with me to Lowe's to pick up some home & garden equipment at fabulously low prices (can you tell "Pitchmen" is my favorite show this summer)?

On the way there, the boy just wouldn't shut his mouth. Perhaps we should start calling him "Mouth". I don't remember what he was talking about, but he likes to repeat things.

"Dad, I have my ball. It's a golf ball."

"That's great buddy, you have a golf ball."

"Dad, I have a ball. A golf ball."

"I see that Drew, you have a golf ball"

"I have my golf ball."

Now I'm always happy deep down inside whenever he says anything at all, but I wasn't feeling that deep down warm and fuzzy feeling at that point. I was beginning to tune him out.

A few minutes later, I start to realize that he's talking to me. Not about the golf ball. So once I tune in I realize he's a little upset. What's he saying?

"Daddy, PLEASE talk to me! Talk to me DaDa!"

It was wonderful. I might have had a tear. It was another one of those moments that make some of the rough times worth it - a moment where you remember just how special it is that he is able to continually improve his speaking ability, and a time to be so thankful that he can talk and likes to be talked to. Nothing can diminish that feeling!

Except...

"Dad?"

"Yes, Drew?"

"I have a golf ball. It's my golf ball, Dad."

Ugh. Yuck. Blah.

This is kind of how I've been feeling, hence the lack of blogs. This whole IEP process is seriously for the birds, and I've had about all I can take. I think that's what school districts bank on. They string you along, violate your rights, press you to your limit so you'll just finally give up. I mean, how much fighting should you have to do, when you have a child with a known disability, to simply have an evaluation. I mean, that's what we are fighting over right now. Ridiculous? Absolutely!



Even though I am stressed out, verging on going crazy, and haven't slept in days, I'm not going to give up. Nope. Not gonna happen. Look at this boy:

Drew was so proud of his "Tower of Bananas." Look at that cute, messy little face. My sweet, little boy. He is growing each day, becoming so much more of a child than my little baby. He deserves to have every opportunity in the world. So, no matter how down I get, frustrated I am, long this process takes, in the end, everything is worth it to make sure he receives the services he needs.

*And a little shout out to Drew's Dad, who is going though this, every single step, with me. Not every husband and dad would be as involved as he is. He is the rock when I am upset, the calm one when I am upset, the logical one when I am upset. I couldn't do this without him.

IEP Tips

As we struggle through Drew's transition to Part B of the IDEA and the whole IEP process, I thought I would share with you a few things we have learned thus far, which may be helpful to others.

1. Get It In Writing: After a transition meeting, a school tour, a phone conversation, etc., send a letter to your district representative recapping the conversation. This creates a paper trail and timeline of events, not only so you can remember everything that has transpired clearly, but should you need to have a mediation or go through due process you will have the appropriate documentation you need. Be sure to mail copies to all parties involved, and keep a set for yourself.
2. Speak Their Language: Key phrases like, "this environment is/is not appropriate", are essential to securing the placement you desire. Remember, school districts are only required to provide your child with a free and appropriate education. They do not have to provide "the best," and using that term can hurt your case.
3. LRE: A wonderful piece of advice we received is to use the LRE acronym as "Language Rich Environment", instead of "Least Restrictive Environment". In our transition to preschool, it is very difficult to find the typical setting for a least restrictive environment, since school districts only provide preschool services to children with identified needs. When evaluating different programs, whether it is a program designed for the deaf or hard of hearing or not, look at the environment for its' richness in language. For example, a classroom with non-verbal children is not appropriate for a oral-speaking child with hearing loss.
4. Use All Resources at Your Disposal: We have found great support from our Help Me Grow representative, since she is used to the transition process. She has been invaluable in securing legal information for us, and has been very supportive throughout this long process. We have used her to witness our meetings with the school district, as an additional party serving on our behalf. Another great resource we have found is the Wright's Law Website, with a wealth of legal information surrounding special education.
5. Placement Offering: An appropriate preschool (or school) placement can not be determined until a Muti-Factored Evaluation (MFE) has been completed. Know your time lines (click on the "Countdown to Transition Link"), and be proactive in securing a date for the MFE as early as possible. This will allow you time to get a second option, have an administrative review, etc., should you have issues with the placement offering.

Overall, we are very disappointed in our transition thus far, but we are actively working through the process. We are currently waiting for a date to have Drew's MFE conducted, so that we can have an educated, meaningful conversation with the school district regarding an appropriate placement for Drew. While I wish this process was easier, we have learned a lot about our rights, and feel very comfortable in our knowledge of the IEP process. If that one day can help others in our similar situation, then this experience will be worth it.

Holding Pattern During MFE and IEP

Last month Drew's Mom posted that we were a "Little Off Course" as far as our blogging goes, so I thought I'd just give a little update.

We're still having some disagreements with our school district concerning getting the MFE and IEP scheduled, and indications are that we will likely not agree with the placement they will offer. It's very strange for a district to indicate what placement will be offered before they've evaluated the student...which is part of our probable disagreement here.

We are taking notes and in the end hope to pass along some very valuable experiences and reccomendations for those of you out there that will be getting into this process a little later. For now, though, we might not have too many updates until we know Drew is going to be placed appropriately.

Talk to you soon!