Showing posts with label USDB. Show all posts
Showing posts with label USDB. Show all posts

20 March 2009


N, C & M told some lovely jokes tonight at the AG Bell Speech Fair. It was cute and they did a good job. C & N wore nifty bow ties, just to be funny. The theme was sports. There was NO way I was going dressed as an enthusiast of spin.

All the children who performed tonight were amazing.

Becky White called me repeatedly to see/make sure we'd be there. We were and even Devan and Gama joined in the fun. Turns out Mr. Tim Smith (:P USDB Superintendent) made an announcement that USDB is going to build a NEW building for USDB/South, under the able direction of Marilyn Madsen! Turns out the Alpine School Dist., (under the assistant-superintendent's direction Mr. ROB Smith, Tim's son) has arranged for USDB to use the land that it has used for +20 years at Orem Elementary. (Michelle & I suggested that brilliant idea about 4 years ago only to be told that the then Lame-o SuperInt. didn't allow Alpine to talk to parents. So Alpine Sc. Dist. (Rob Smith) stopped talking to us.) Gee wow?!

The description of the future building sounded like he was reading the letter I wrote to the state big wigs and also the J2H Vision Statement. No one besides Tim, Marilyn, the Alpine School Dist & the State Legeslature were given any credit. It will be modular. Opening next September. Oooh ahh. Grand.

Wash my hands of it. I do wonder if Becky wanted me there to hear that. Later when I cordially congratulated Mr. Smith and he cleverly demurred to Marilyn, who Kim Saul [Didn't she retire from USDB?] called the best USDB Pre-school director in the state. (She is the only one with that title.)

Next year K, J, N & M will be going to Walden! I'm going to keep my fingers crossed that all goes well. Another year of 5 children & 5 schools/ways will pretty much do me in.

17 July 2008

E is for Ettiquette OR L is for Late OR T is for Tardy Thanks.

That's kinda a Rocky & Bullwinkle title. This post is not about new furniture or cute clothes... just cleaning up and posting so that I can remember what I said/did. ---> BORING for most.

In May 07 I went to SF and visited 2 schools for deaf children: The Auditory Oral School of San Francisco. (Man, I wish I could dot that "i" with a heart!) at 1234 Divisidero, 94115 and also the Jean Wiengarten Peninsula Oral School for the Deaf in Redwood City
I have finally written those thank you notes. Late is better than never. Here it is, each modified slightly:
Hello ML & KS, Hello JC,
It was a pleasure to tour your program in May 2007 (!) I have wanted to write since to say thank you for sharing your insight, experiences and inspiration. I have also wanted to write something grans and glorious about progress in Utah. Things are progressing and your examples are making a difference -- so without waiting another day [or getting detrailed by a cancelled house tour, IEP mtgs, traveling to SLC for speech, dealing with USDB, job changes, 5 children...] I want to write and tell you: THANK YOU!

The foundation that I started (Journey to Hear, to help deaf/HH children in Utah County) with 2 other mothers has been stalled for a variety of reasons. One mother moved to Logan (2 1/2 hours North) to join Karl White's new program [Sound Beginnings].

Recently we decided to pull our daughter (4) out of Utah Schools for the Deaf and Blind, hoping she will make more progress in a regular (hearing) pre-school rather than in the fractured USDB program. These decisions are hard to make and life interrupts...

Thank you again for taking time to talk with me, letting me tour your facilities, watch your enthusiastic teachers and especially for sharing your experience with me.
Sincerely,
H

11 July 2008

H is for Happy. As in: I am so happy that I FINALLY snail-mailed the letter to Dr. McP at BYU.

In the process of clearing off my desk I am finishing things up, as well as throwing things out. Several weeks ago I wrote a long over due letter to a department chair at BYU. I emailed it. Still haven't heard from him... Today I put a copy in the mail. I showed K (13) and told him how when I was a kid this is how we wrote to people. I let him touch the envelope! He even chose the stamp.

An aside: About the same time that I emailed Dr. McP at BYU I wrote to ORSON SCOTT CARD! about a great article he wrote about Good/Better/Best Mormons. That is my title, his was "Heyborne in the age of Purity." Here is the link to the article in Mormon Times: http://www.mormontimes.com/ME_blogs.php?id=1346

Mr. Card actually wrote ME BACK! Promptly! A lovely multi-paragraph email. Drat that I can't publish it here. He asked me not to, which is understandable. I'm not publishing my letter to him either lest I offend all the Mormons I know, that I know are so much better than I... neighbors AND relatives! (thin ice zone) Anyway, I haven't heard from BYU's Dr. McP.

Here is the BYU letter:
Since BYU’s Speech and Language Clinic director Lee Robinson told me last August that both of my deaf children were being dropped from BYU’s roster, I have wanted to write this letter. Now almost a year later I can tell a more complete story.
In short: Ms. Robinson called us last fall and left a message that there was no longer space for my children; possibly there would be space for the winter semester. She called again in January saying there wasn’t space for either of them. By the abrupt cut off of services it was clear that the clinic’s priority is not to provide consistent and fair services to children, but rather to accommodate the students’ changing numbers and needs. This practice hurts the children and families the clinic is meant to serve, especially since there are so few speech services for deaf children in Utah County.
Here is our story: My daughter M was implanted January 2007, she was just 3 and had been going to speech therapy at BYU for at least one semester. Ms. Robinson decided that since M would not be activated for a month there wasn’t any use in continuing therapy; she was abruptly dropped. I was not consulted, or even asked. When I asked the graduate student who called in January if I could talk to Ms. Robinson the student said that I wouldn’t change her mind.
This decision was not only rude, it was wrong. The first weeks after a young child is implanted and activated is crucial to her development. Also, during the time before the activation M could still hear with her very powerful hearing aid on the un-implanted side.
I had been told she would definitely be in for Spring term. She wasn’t. Fall? She wasn’t. This unfortunate situation was compounded by the fact that the Utah School for the Deaf and Blind (USDB) was asleep at the wheel and didn’t start promised therapy until May. Our insurance and the ENT surgeon didn’t offer any therapy or suggestions.
As M mother, not a doctor or therapist, I knew there was a serious problem. I spoke to the audiologist who mapped M's implant and he recommended that I call Dr. Susan Naidu at the University of Utah. She was very kind and promptly set an appointment for a diagnostic evaluation. I asked about their waiting list. They don’t have one. BYU’s is about 3 years I was told when I first applied. Deaf children sometimes jump to the top since the students need to work with deaf children.
M started speech at the University of Utah immediately. She looked forward the therapy and I watched each session. The students were professional, prepared and always happy to see and work with M. Perhaps the best part of the experience, aside from the promptness of getting the needed services, was that Dr. Naidu also observed the therapy, joined in as necessary and shared insights and gave advice about CIs and deaf children. The differences between the programs and the directors are stunning.
I noticed at BYU that even though the therapy rooms and observation areas had been recently remodeled the professors rarely spoke with me; they were down the hall, behind a locked door. Also, my other children were not allowed to watch or participate at BYU. This was often difficult and unfortunate since siblings are sometimes the best language teachers. The student therapists would talk to me and then talk to their supervisors for answers, which I would receive the following session.
My son N also has a cochlear implant. He is now 7 and was implanted at age 6 after about 11 months of not hearing due to a sudden drop in his hearing and a prolonged battle with insurance coverage during which time he received therapy at BYU.
He was not dropped from the BYU program until the fall. Ms. Robinson said he would have a spot in January. When she called again to say, “Sorry.” I was not surprised but I was disappointed. Her reason was that there simply weren’t enough students to provide the therapy. Is this another department that BYU (Provo) is doing away with? If I had known that there was a possibility that the services would be so inconsistent I might have weighed my options more carefully.
We were not the only family dropped, and there are other children that were kept on. I don’t know what the criteria for removal was. It wasn’t solely need.
Ms. Robinson came across as cold and uncaring every time I dealt with her. Once while discussing payment she scolded my son for touching the small action figures in her office, that were at his eye-level. Another time she hovered in the entry waiting for me, to see if we were late? She never spoke to me and I found that odd. I had told the therapist that I couldn’t pick up all the children from 4 different schools, travel and make it on the hour. Once the time was changed to quarter-after the problem was solved.
After N was dropped I called Dr. Naidu. She was happy to work with N as well. The students and Dr. Naidu went out of their way to get N and M on the same days, times and in rooms where I could observe both children at the same time. I deeply appreciate their thoughtfulness.
The cost is about twice BYU’s rate. It should actually be much higher but since our insurance doesn’t cover speech therapy we get a discounted rate. The drive (twice a week) is grizzly, not only the cost of gas and environmental concerns, but the time away from home (minimum 6 hours a week, verses 2 1/2 at BYU) is what is especially difficult for us. My other children need a parent at home in the afternoon.
The lack of options for deaf children in Utah County is a primary reason that I am writing this letter and have tried to create a foundation to help deaf children in Utah County. When I mentioned this problem to Ms. Robinson she expressed little interest and said that BYU students would most likely not be available to participate at a new Utah County facility.
I hope that this letter helps BYU improve its Comprehensive Clinic services. I welcome hearing from you.
Sincerely,
H ...

22 May 2008

P is for Pink car for Mlle. M's Preschool Project.

Need to write a list... C is out of town and I need to do the school project:
BUILD a CAR ---> transportation days at the school for the deaf, an excuse to go overboard. These projects are a combination of desperation, competition and guilt. They MUST be done. M-doll is really looking forward to it! It is all that she is talking about. I have been known to miss school on days that require too much parental involvement; I don't dig dressing up like a brown bear and dancing around. But other parents do! So then I wonder what is wrong with me? What is wrong with the system these days that requires SO much parental involvement... my folks, who are quite wonderful, NEVER did anything like this for my brother and me. It was a stretch to get picked up on time or go to an assembly.

The list:
What does a young girl's car need?
Pink
Pink
steering wheel
wheels
license plate
pink
headlights
glitter
straps, in pink, to make car wearable
tail lights
windshield
seatbelt <-- yep. the instructions call for a seatbelt. "Click it or ticket."
driver's license?
key?

Pictures to follow...

06 February 2008

L is for the Letter of the day, to USDB.




It probably doesn't come as a surprise that I write letters ... everyone does these days with emails and general bigmouthedness. This is my letter of today. Last week my letter was to the legislators about supporting an appropriation that would help USDB. Last Friday night there was a meeting with the Karl White (Sound Beginnings) and Tim Smith (USDB) camps. USDB came off as defensive, petty and they lied about several things. The situation is pretty ... pretty sickening.

The following is a letter I wrote and yet did not send. USDB, the staff, administration, teachers do NOT listen and do NOT want to change or improve their program. To quote the superintendent, "We have the best program there is. And until I see proof of a better program we're not changing." What a visionary; how progressive. By the way, USDB, in 1990, won an award from the AG Bell Association for best public deaf program. 18 years ago?! In any field that is a long time ago, in deaf education that is antebellum, even before the CI revolution!

This letter sounds fairly pleasant and yet ... C and I wonder how it would be received. Not very well, probably defensively. Never forgetting they have THE best program out there.

Hello L [M's (dedicated) teacher at USDB],
What size will the Valentine book [M needs to bring pictures of things she loves] be? I thought I'd cut/choose the pictures to fit the book.
Also, several of my friends make books. All sorts of art books and simple heirloom/keepsake books. They have taught me and I'd be happy to show you, or Nichole, samples or instructions.

Also, I would love to talk with you (or anyone at USDB, Marilyn, Kim) about Karl White's proposal, what you thought of the meeting on Friday night. What do you think the future of USDB is? Would that be productive? I think the parents' perspective is very different from the school's.

I loved the comment from the father, if someone wants to help improve USDB why not accept the help? I have felt this same way with USDB and getting a new facility for the pre-school (with Journey to Hear); I've met one road block after another. I admire the way Dr. White looks at situations and figures a way around them. I don't want to put you on the defensive, I am not "venting," to use your term, just saying USDB is in a position to benefit from Dr. White.


Thanks for listening,
[Yeah, right.]
Hailey

15 December 2007

X is for my LETTER to X96.

For those of you not in Utah, X96 is a radio station with a cool morning show. The rest of their programming is alternative music. I just wrote this letter and thought I'd post it.

Years ago my friend Elizabeth Pfau asked me if I was going to be one of those "letter writing Moms?" YEP. One (more) reason for the name of the blog.


Hi Bill, (and Kerry and Gina),

I listened to your show on Thursday. I had been looking forward to it for the week before, then Thursday morning I was stuck forgetting about it while writing an email to my son's teacher, and ccing his audiologist. My 10th grade daughter reminded me. (Its hep that we can both listen to your station.)

Anyway... to attempt to be brief:

• We have 5 children, our 2 youngest are deaf, both have cochlear implants. They are 7 and 3 years old. Our 7 year old is in 1st grade and is mainstreamed. Everyone is amazed at how well our children hear and speak. We are too!

• Our son heard with hearing aids and then lost the rest of his hearing around his 5th birthday. That is a recipe for frustration. Although we signed with him he knew how much he was missing. He was a miserable kid to be around. The CI has completely helped him emotionally and with communication. We had to fight our insurance company to cover it. (Our cost would have been $80K!) He still needs speech therapy but that story is kinda long...

• Cochlear implants are miracles, not "satellite dishes" on heads. Is a diabetic pump on a child, or adult, something to disparage? Also, children born with hearing loss into hearing families are no longer sent to "residential" schools, isolated from their families, since they can learn to hear and speak so much more easily than in the past. Cochlear implants are the future for deaf children and adults.

• Deaf people who can speak, statistically, have MANY more options to them. They are autonomous people. From my vantage point I can't imagine saddling my children with a lifetime of being accompanied by an interpreter and never spending time with grandparents, cousins and other extended family and friends because the rest of the world doesn't sign. We sign some and don't have a problem with it, but I don't expect the rest of the world to. If our family only spoke French wouldn't it be odd to demand that everyone around us learn French? Yeah, yeah, we should then move to a French speaking county... again, AWAY from everything we call "home."

• The bit about "dating a deaf" girl kinda freaked me out. For many sick and wrong reasons deaf children are sexually abused more than other children. I don't care how hot the deaf girl was in the studio, it just didn't sound right to me. How to get to know a deaf girl or boy? Say hello and wave. I can't clarify my thoughts here... fear for my kids? or the memory of the weird friend of friends that told me that he always wanted to have sex with blind girl? --just because, he said. Girl? Blind? Again, I'm not at all articulate here, but it's just not something to encourage, at all.

• The bit about deaf education was right on. There is an excellent new program that just started in Logan called Sound Beginnings. http://www.usu.edu/ust/index.cfm?article=15151 It would be cool if you talked to Karl White from that school about what is going on for the Future of deaf children. USDB is a fairly whacked out place. Funny thing is they just don't listen. In Utah County I am involved with a foundation that is trying to get off the ground called Journey to Hear, to create a great preschool that is not in +20 year old trailers...

Thanks for paying attention, which is what I tell my children to do, since listening, whether hearing or not, is tricky.
Keep being original. Your show is great.

H ...
...Utah

p.s. Good luck to Gina. And good luck finding a sub. My daughter wanted me to enter... would've been cool. There is a spin teacher at Gold's Gym in Utah County... RONA! She would be fantastic! Even for a guest spot. She has a large devoted following. Amazing teacher.

10 August 2007

B is for BOX. Ah-Ha.

Earlier today I turned to C and declared that the word "only" is an idea killer. Meaning, whenever I hear "only" I automatically do one of two things:
1) Turn off. Then I sigh and think, "Oh, o.k. I guess that is the only way to do that..."
2) Turn on. Then I think, "Oh yeah?! I'll show you!" and proceed to dig in and find a way around the Only way.

The point? If someone says they want to "think outside the box" and then they follow that with "Only..." you know they are full of BS. (A certain government agency (USDB) comes to mind.)

C will post more about this on his funky and fun new blog for Dialect Inc. Brandthropology.


07 August 2007

G is for Government Agencies -- like USDB


Ya' know folks... a bobble head Uncle Sam cupcake topper? Somehow it seems about right these days... Kinda goofy and optimistic and scary and reckless at the same time. Hmmm.

This video is too perfect. It reminds me of USDB (Utah Schools for the Deaf and Blind), to the T! The escalator breaks down and they can't figure out for themselves how to get out of the pickle they are in.

C and I asked what we can do to help. How much money they have for rent, building expenses. Can we find better facilities to rent? Better acoustics, could we call the local boogie man audiology monopoly? Nothing. Perhaps in 3 years, going through the State Legislators and red tape-o-matic.

Nothing? 3 Years?! M will be 6 by then. Ugh. It was crazy making. Truly. The Administration talks in circles.

C and I hope to do something. Tomorrow we are meeting with a great local bank that is looking to partner with us. Yeah. Will post more on JourneytoHear.org