GO WHITE SOX!!Walk out the door today into a wall of humidity. Take a shower, step outside and be ready to go inside to take another one. Lily and I are going nowhere outside today. Once again I have been behind on the blog. It's just so many things happen every day that it's hard to write it all down. And please forgive me for the hyperlinks listed below as they are formatted properly I don't think.
Sleeping on Hugo The Hippo
On the RoadJim, Lily and I took a trip June 7th for the week down to Jacksonville Illinois, home of the Illinois School for the Deaf http://www.morgan.k12.il.us/ISD/ for the Parent Institute http://morgan.k12.il.us/ISD/pdf/pibrochure2007.pdf. It was one of the most emotional, stressful times we have had since Lily's first heart surgery. We stayed in the dorms there and had a pack and play for Lily. We were lucky enough to get a room with a bathroom in it! There was barely enough time take photos between meals and evals and appointments. We will be receiving a CD with photos and videos of our time there though. I will post it when we receive it!
Lily got to go to preschool every morning while we went to group counseling, sign language class and lectures on things like cochlear implants, different methods of communication (ASL, Signed English, Cued Speech, etc). Every afternoon while we were at another lecture or an appointment, she would get to hang out with great caregivers in the downstairs living room of our dorm. We had one night where the guys from the ISD football camp ran "Deaf Town". We learned about equipment for a deaf/HH home like fire alarms with lights, Sonic Boom Alarm clocks along with Blackberrys for texting your friends, TTY phones. We had to "order" food at a restaurant in sign, learn the correct ways to sign No and ways to sign expressions using facial emotion. That was just one evening and we could have used a whole afternoon so we would have a longer chance to talk to the ISD football team about their lives as deaf/HH teens.
Lily was in the Frog class in Classroom B. She ended up at graduation as the Feisty Frog. We have the inflatable frog they gave us that says FIESTY on it on top of her armoire in her room. Whenever we ask "Where is Feisty Frog?" she turns around and points straight to it. Most of the time that is unaided! Go Lily!
Ok now I have to go off on a political bent because ISD and Illinois School for the Visually Impaired (also in Jacksonville) are at risk of being closed as of July 1st if the "50% budget" is not changed. THIS MUST NOT HAPPEN. If you are in Illinois, please call your legislators TODAY to demand a tax increase and a budget that reinstates human services.
Michele Westmaas is one of the fantastic moms I have met on my Charge Yahoo Listserv. She has a blog at http://momonamissionblog.blogspot.com/. I have been on her case to start writing again and I hope she does but please read some of her past pieces. She was one of the presenters at the Parent Institute as well. She spoke about her experience with her daughter Aubrie and IEPs. We learned to remember the phrase "It's what my child needs and what's appropriate" and not to use the word want. Get a copy of the board of Ed Blue Book and let Lily play with it, put a coffee cup on it. You want to at least LOOK as if you know what you are doing. Also remember that if you are getting emotional during the IEP that you are the one in control and can take a timeout when you need to (me emotional? what?. This info will be coming in handy soon because we will be touring a possible school for Lily in September.
At the Institute we made the decision that ASL was the way to go for Lily. This is not just a little choice for her either. At the Institute Lily was evaluated by a psychologist, audiologist (Beth from Dr. Young's at Children's), a vision person, an Early Childhood person (Karen is awesome!), Dr. Snyder ENT from Northwestern/Children's. We have asked to Beth get with Dr. Young to review the MRI Lily had ages ago and see if she is a candidate for a cochlear implant. I have a list of at least 30 things to do or to look into.
It was overwhelming to get all of this information. We are so blessed to have been one of the 30 families that was able to attend. The people down there we would like to thank are Sue Brosmith, Lori McKenzie, Dr. Nancy Scott, Dr. Greg Long (GET IT IN!), the ISD Football players, the daycare providers in Preschool and the Dorm (Kate and Michael and the lady who made Lily two little bags) as well as the ISD football team and a ll the families who added to our Sponge-like experience downstate. Thank God for Parents Night Out!! (Dolly it's DSCC NOT DCFS:))) I hate to think that this may have been the last year for the Parent Institute.
Lily was in the Frog class in Classroom B. She ended up at graduation as the Feisty Frog. We have the inflatable frog they gave us that says FIESTY on it on top of her armoire in her room. Whenever we ask "Where is Feisty Frog?" she turns around and points straight to it. Most of the time that is unaided! Go Lily!
Ok now I have to go off on a political bent because ISD and Illinois School for the Visually Impaired (also in Jacksonville) are at risk of being closed as of July 1st if the "50% budget" is not changed. THIS MUST NOT HAPPEN. If you are in Illinois, please call your legislators TODAY to demand a tax increase and a budget that reinstates human services.
Michele Westmaas is one of the fantastic moms I have met on my Charge Yahoo Listserv. She has a blog at http://momonamissionblog.blogspot.com/. I have been on her case to start writing again and I hope she does but please read some of her past pieces. She was one of the presenters at the Parent Institute as well. She spoke about her experience with her daughter Aubrie and IEPs. We learned to remember the phrase "It's what my child needs and what's appropriate" and not to use the word want. Get a copy of the board of Ed Blue Book and let Lily play with it, put a coffee cup on it. You want to at least LOOK as if you know what you are doing. Also remember that if you are getting emotional during the IEP that you are the one in control and can take a timeout when you need to (me emotional? what?. This info will be coming in handy soon because we will be touring a possible school for Lily in September.
At the Institute we made the decision that ASL was the way to go for Lily. This is not just a little choice for her either. At the Institute Lily was evaluated by a psychologist, audiologist (Beth from Dr. Young's at Children's), a vision person, an Early Childhood person (Karen is awesome!), Dr. Snyder ENT from Northwestern/Children's. We have asked to Beth get with Dr. Young to review the MRI Lily had ages ago and see if she is a candidate for a cochlear implant. I have a list of at least 30 things to do or to look into.
It was overwhelming to get all of this information. We are so blessed to have been one of the 30 families that was able to attend. The people down there we would like to thank are Sue Brosmith, Lori McKenzie, Dr. Nancy Scott, Dr. Greg Long (GET IT IN!), the ISD Football players, the daycare providers in Preschool and the Dorm (Kate and Michael and the lady who made Lily two little bags) as well as the ISD football team and a ll the families who added to our Sponge-like experience downstate. Thank God for Parents Night Out!! (Dolly it's DSCC NOT DCFS:))) I hate to think that this may have been the last year for the Parent Institute.
Silly Lilly!
4 comments:
Hellllooooo, Lily! And Karen and Jim! We've missed you!
I am so excited for your time at the Parent Institute - what an opportunity for the three of you! It sounds intense, thought provoking and fun.
Lily - you are such a big girl! Your hair has gotten so long and curly - you are so cute, as always!
We hope we get to see more photos of you soon, with commentary from mom about what other adventures you've been having. (nudge, nudge, wink, wink, Karen!)
Hello Rock family - Love your new pictures of Lily! There is nothing more cute than a sleeping baby! Love that she is a White Sox fan. GOOO SOOOX!
I love reading about Lily. Jim says she is getting so strong and is pulling up on everthing. Glad to hear things are going good with her. Can't wait to see your next update.
Jackie Hoheisel (I work with Jim)
I wish I could have come to the Jacksonville, those things always seem to happen when the kids are still in school or I have no where to put the boys. Michele is AWESOME I went to New York with her last year.
The Illinois budget is really making me mad, I lost my job as a respite worker because of the budget cuts.
I hope things go well this summer and I hope we see you at the CHARGE Conference.
Crystal and Eva
Hi! I found your blog while looking for information about CHARGE syndrome, because I am going to be working at the CHARGE conference doing child care next weekend and I wanted some ideas of what to expect. Maybe I'll see you there! Your daughter is VERY cute by the way!
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