Friday, June 26, 2009

Ahhh Summer

Blankets, sweatshirts, the smells of cherry-flavored cough syrup and chicken soup, the sounds of the thermometer beeping and your hubby coughing.

Ahhhh, summer.

Well, it is when your husband has that "flu". He is doing much better and is allowed out of the house now. He is very excited. He's been home since last Thursday and had a hard time not being able to do anything. AJ and I were treated with Tamiflu as a preventative only (we're fine). Honestly, its just a nasty flu. Jer was treated right away and we did everything by the book.

Wouldn't you know it, this week was supposed to hold a few days of vacation for Jer. Not exactly how that panned out. His job is very demanding and he is pretty much required to be there when the physician he works for is there. He was out of state this week. Most of Jer's time is used up by AJ's appointments, so he was really looking forward to some regular time off.

Jer's "situation" made for an easy week for AJ. Unfortunately, we cancelled his birthday party. We only had one thing to do this week, which was toddler group on Wednesday. Which, may I say, was very odd. I had no idea what to do. AJ enjoyed his pool for the first time ever. We colored and ran errands to give Daddy some time to rest minus a crazy three-year-old running around. I had the energy to cook. My mom came over, brought us dinner... and provided some contact with the outside world. AJ took lots of baths and played outside when it wasn't scorching outside. We had time to give the dogs the attention that they are desperately craving these days. Jer and I stayed up late and watched movies. We all slept in. Jer and I had a chance to have many conversations...of course on opposite ends of the living room, but still. So while it wasn't the best of circumstances, we made do and were forced to "just be".

Now that Jer is feeling better, we are hoping to make the best of our weekend. Sunday is AJ's actual birthday, the big 'ol 3. We are hoping to replace the infirmary with popsicles, sunscreen, sand, brats, and the sweet smell of chlorine.

CI Update

AJ had an extra booth-testing/audiogram done early last week. Because he tests so well at 1 month post-activation and his audi was pretty sure AJ was hearing in the 40-50db range, she requested we do a 2 month post-activation audiogram. (Usually it skips from 1 month to 3 months)

About 15 minutes into testing we figured out we had a bad cord. His first equipment issue ever. Not bad for 2 months. Toddlers are extreme hard on their equipment! By the time we got the new cord in and all that jazz, he was over it. Not screaming, but just not interested.

We got NO information whatsoever that day. So we have literally no idea where he is hearing. Fantastic. At the time of testing he had been on his last program for a week or so. We all agreed that knowing AJ, maybe that wasn't enough time for his to recognize and pay attention to the new sound levels. He is on that same last program for the next month, at which time we will go in and do another audiogram.

We also presented the idea of a 2nd implant for AJ. I received a call from his audiologist today. She spoke with his speech therapists and we all agree that we will allow him to begin school at Lowell and then re-evaluate. They want him to make a bit more progress before we jump into a 2nd CI. We agree.

As for what AJ's been doing (gains and such), that'll be in another post.

Funny Friday

Tuesday, June 16, 2009

Early Birthday Fun

The Grandma's & Grandpa were at it again ;) Both the play climber and sand/water table were shipped directly to AJ. He had a blast this weekend!


Congratulations to AJ's Daddy on his acceptance to the University of Phoenix!! YAY!! June 30th is his first class and he's very excited.

AJ says "Go Daddy!"

Friday, June 12, 2009

8 Years



We celebrated our 8th wedding anniversary on Monday. We were a little disappointed that we weren't able to go up to our B&B like we usually do. But, we improvised. After the meeting with the program director/teacher from Lowell, we fed AJ and but him down for the night. We put a blanket on the living room floor, got some awesome Italian food from a neighborhood restaurant, and watched Dane Cook's latest comedy show on DVR while we ate. We had a hard time staying awake, while mumbling to each other "we're getting old." LOL It was a nice quiet night.

The next evening we attended a fundraising event for the Center for the Deaf and Hard of Hearing. It was a wine & beer tasting downtown. The location was great, as was the food and beverages. We brought along our great friends Dustin & Michelle, and had a blast. Dustin even won the silent auction on a pink guitar for his daughters. We followed up the tasting by heading to the East Side to an awesome lounge. All in all, a great anniversary.

To my wonderful husband...thank you for being you. 'Nough said.

AJ's IEP Meeting

It seems I have slacked on our blog recently...probably because I couldn't even tell you what day it was yesterday. Today I can-its FRIDAY! We've had a lot going on in the last two weeks.

AJ's IEP (Individualized Education Plan) meeting was last week Wednesday. Any child who needs special education or has special needs in regards to their education has an IEP. The meeting last 2 1/2 hours and was attended by 13 people. We presented all those in attendance with our binders. I chose to put our information in binders vs. stapling them together. For one: it was mondo thick, two: a binders shows better presentation, and three: I figured they'd be less likely to throw them in the trash. The binders went over very well and everyone had a moment to take a look at most of the contents before the meeting started. The contents included 5 different sections:

1. AJ's Story

2. Parent Report - A summary of AJ's personality, his strengths, weaknesses, needs, and our goals presented to the IEP team)

3. Related Research & Articles - Included: AG Bell Statement on CIs, Power of Hearing article, articles on using sign language post-CI as a bridge to speech & language, and an article on Sensory Integration Dysfunction

4. Lowell Elementary School in Waukesha Auditory Oral/Total Communication Programs - I printed all of the information off the program website including curriculum, acoustics in the classroom, and a general summary of this amazing program

5. Photo Gallery - We included two pages of photos highlighting AJ's progression since we first received his referral pictures, till now. It was very important to us to have the IEP team look at AJ as a child, not as another case on their case load. For those that hadn't met him yet, it really helped them gain a better understanding of who AJ is and how far he's come.

It was the loooooooooooooooonggest 2 1/2 hours ever. Toward the latter part of the meeting, I had to give myself a bit of an internal pep talk "Keep Fighting, Keep Fighting".I don't know what it is, but there is just this tension when you walk into an IEP. All of these people coming together with different opinions of what your child needs and should have. I am happy to say that most of us were all on the same page. We left with no concrete plans. I guess we didn't realize that the decision period for placement could be extended. Our home district was willing to contract with the Center for the Deaf to allow AJ to continue in his toddler group through the end of summer. Yeah-BUT, it was unsure as to whether there would be a place for him. We all agreed that Lowell's summer program was not what we were looking for (individual sessions vs. us wanting him to be in a group of his peers). The program director/teacher of the 3K class at Lowell came to our meeting and asked if she would be able to come and observe/play with AJ to determine if he would appropriate for Lowell's program. We scheduled that for this past Monday. Another meeting was scheduled to take place at Lowell this past Wednesday.

In the time between the IEP meeting and program director/teacher's visit, we began to panic. What if she doesn't think AJ is appropriate for the program? What would happen? His case would get thrown back to our home school district and they would have to provide for him. NO! AJ's signficant cognitive delay was part of this panic. Would he be able to access his education in this program? It made us feel like we just haven't done enough with him. He has made tremendous gains and yet it didn't feel like it would be enough. Would he need a full-time aide to help him in the classroom? Would Lowell provide that with AJ being an out-of-district kiddo? Would our home district allow the aide since they would be contracting with Lowell?

At the end of last week we were informed that there IS space for AJ to continue in the toddler group at the Center for the Deaf. WHEW. At least we knew his summer placement.

The visit with the program director/teacher went very well. She spent two hours here with our little man and was even able to see his OT work with him a bit. It was the day of the tornado warning, so the whole afternoon was rather interesting. She was very impressed with AJ. She would literally ask me a question "does he do this?" and he would do it. He responded to multiple auditory cues for more. He put objects into a container for her and his OT (YAY!) and followed my finger pointing to Daddy for more crackers.

The meeting on Wednesday was quick and painless. We took AJ to Lowell with us. The meeting was small and AJ just played on the floor with toys he was provided. The newest draft of his IEP (15 pages) already had Lowell written in as placement. We signed on the dotted line. AJ's school placement for the 2009-2010 school year will be at Lowell Elementary in Waukesha. We have chosen to place him in the Total Communication classroom. There will be 3,4,5 year olds in this classroom next year, with AJ being the youngest. He will attend 4 out of the 5 days a week, until we and the IEP team meet again 8 weeks into the school year. He will attend the mornings 8:35-11:15am. He will not have an aide! The program director was very impressed with how independent and engaging AJ is. We all saw pros to his attending both 4 and 5 days a week. At this point, we chose to start with 4 and use the extra day for one of his private therapy sessions or, imagine this, a BREAK. He will be receiving PT, OT, and Speech at school. Beginning in July, AJ will also receive "medical" PT and OT four times a week with his current PT and OT at their clinic. Once he turns 3 he is no longer in Birth to 3, so they will stop doing home visits. Which is fine, since in all honesty, he's "outgrown" PT at home.

At the end of the meeting, AJ had found the classroom door and was sitting with his koosh ball in front of him. I walked over to him, he saw/heard me and looked up with this big smile. I asked him "Where's your ball?" and then said and signed "Where's your ball?". He looked at me and then looked at his ball and picked it up. What a SWEET ending to such a long process.

I am soooooooo looking forward to receiving his registration packet in the mail and going supply shopping. *I have a thing for school supply shopping.

Our meeting ended at 8:34am, with just one minute for the program director to get to her classroom. She will be coming to observe AJ again during one of our speech sessions at Children's and during the toddler group at CDHH. To have someone who is so passionate about working with children with hearing loss and doing everything she can to see them succeed: PRICELESS.

To all of those in the IEP process, beginning, or just dreading it when it is your child's turn: Let's be honest. It isn't all fun and games. It is a hard, long, tedious process. I have cried many tears, had many sleepless nights, and ate way too much chocolate in the last few weeks. Ask my husband, I haven't been June Cleaver lately. But the feeling of gaining access to the education you want for your child is AMAZING. It may take appeals, and letters, and stress, and lots o' margaritas, but all of as parents of children with hearing loss, know what its like to advocate. This requires "super-advocation" if you will. So ladies and gents, bust out that cape and let 'em have it. Your child deserves the best. You know that. Make sure your IEP team knows that. (Stepping off my soapbox now)

Wednesday, June 3, 2009

He's Got Skills

Just a vid of AJ over the last two weeks or so...vocalizing and showing off his "more" without visual cue. We love how he stops and looks up when the frog stops talking...but then loses interest when he hears the dogs come in the house. and "talks" to him drum. We realize some of the video is not the best quality, but its what he's saying thats important...

*Don't forget to disable music above before viewing video.

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