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.

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

Met with the GOVERNOR!

On Tuesday I attended a rally to support new facilities for USDB (Utah Schools for the Deaf and Blind). I'm not really the rally type of person but this is an issue that I have worked on for years only to meet with ineptness and lack of vision or intesrest by USDB. This time this was organized by someone else. I wanted to support them. It was worth it. A mover and shaker dad/salesman (Chris Bijou) arranged a meeting with Governor Huntsman ans several members of his cabinet. I asked if I could go and represent Utah County. Several of the people had seen the Journey to Hear blog and thought I could contribute. I think I did, asking some good questions about how Charter schools are built so quickly, private funding/donations of buildings and also the unique pre-school need deaf children have.

Journey to Hear could raise all the money needed for a new facility get it built and then donate it to USDB? THEM?! Hmmmmm. That doesn't seem to be the right solution.

SOUND BEGINNINGS in Logan (USU) has speech therapy THREE (3!) times a week in the SUMMER. USDB, Utah County, isn't doing anything for deaf children this summer. ZERO. No one seems to "qualify." This seems borderline evil.

Right now we need to figure out hat our goal is. Esther and I are bouncing ideas back and forth. We welcome any ideas/comments.

Parent Meeting in the works for:
a Potluck at the Pool
Saturday
2 August 2008
4-7:00 p.m.
2720 Edgewood
Provo

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

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.

J is for the Journey to Hear Foundation!

Archibald's Halloween Party!
SATURDAY 20 OCTOBER 07
Bring Your Entire Family!
Meet Other Families Dealing with Hearing Issues!
Carnival Games, Food, Prizes & Spook Alley!!!
DRESS WARMLY!
Starts at 5:00 'til your bones shiver!
Questions and Directions? Email Hailey at hailey@journeytohear.org

You might already know about this foundation that C and I and other parents are trying to get off the ground... it is called the Journey to Hear Foundation and it's aim is to create a central place for excellent services (pre-school, therapy services, information, support) for deaf children in Utah County.

Currently families need to take their children allover the state and even the country, to get the services they need. We try to have an activity, to build support, continuity and keep the momentum going, about every 4th Saturday of the month. This month J2H is going to piggy back onto the Archibald's Halloween party. Their party is great, with donations from Wal-mart, college volunteers and huge preparations by Kevin and Michelle. Thank you Archibald Family for your hard work!

If you'd like to know more about Journey to Hear Foundation check out our fairly new blog. http://journeytohear.blogspot.com/

Right now we are working on filling out the paper work to get the 501(c)3 up and running so that we can accept donations and start serious fund raising.

ALSO: Isn't that a great illustration?! Katri Haycock at Dialect (our company) did it. Check out the J2H blog for her other illustrations. So lovely! Thanks Katri!

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

F is for Foundation, as in Journey to Hear!

Check out our spiffy new Foundation and its blog! And please come on Friday!

Answer to question on Design Mom

A Design Mom reader named Diana wrote:
Fascinating. Do you encounter problems from the deaf community for choosing the implants for them? Hey, even my hearing child needs repetition!

Diana,
Diana,
Yeah, I need a lot of repetition too! (Ask my husband about how to use the ¡$x%#@*™*! scanner.)

You ask a great (great big!), question about the deaf community. Here is a great big answer! Hope it helps clarify.

It is true that there is STILL a lot of resistance to deaf children/adults speaking. Look at all the craziness around Gallaudet U. last fall. The idea is that they are born/become this way and it is fine.(As in: Just Fine. Grrrr.) Of course it is fine. It is also extremely limiting. Personally I don't understand that reasoning at all. Why not learn a 2nd or 3rd language? Why not sometimes wear heals and other times flip flops?

Also, I can't expect my children's entire extended family to learn sign language. This means that they would be completely cut off from family stories, friendships and affection. Perhaps other families with deaf children figure this out, but no one, on either side of our family, has stepped in knowing sign language fluently. Can you imagine if your favorite cousin, uncle, grandmother only spoke to you in pigeon English?

Fact: 80% of deaf adults who don't speak are UN or UNDER employed. That is deplorable. Obviously this is bad for everyone. The inverse is also true though: 80% of deaf adults who speak are employed, contributing and probably happier with their lives.

Yes, I've heard from a lady that it is not my decision to make. She sat next to me on a plane. She had lost their hearing later, during her 1st pregnancy, well past learning how to speak. At the time we were contemplating a CI for Nathan. Who else is going to make the decision for a wee bitty child, who has such a short window of time to learn to speak?

Since technology has changed so much in the last few years this argument is becoming increasingly old fashioned. CIs have only been around for about the last 20 years, and they keep getting better and better.

Nathan and Margo both wear Advance Bionics Harmony implants and are doing brilliantly. Margo needs a lot more consistent therapy, she is a bit behind for her age.

Nathan's story is interesting--for another time & place. In short: He HATES to be without his implant! Without hearing he was a destructive, frustrated, mean and ugly child. He knew what he was missing and was so unhappy. We were too. This side of the militant deaf community is never in the spot light.

We live in central Utah where services through the state school for the deaf are pathetic. (Have to say there are some great teachers and some whopsy ditsy administrators.) (We, another mother, my husband and myself, have just started The Journey to Hear Foundation to help this situation.)

Although the doctors, most audiologists and the school for the deaf are asleep at the wheel there are some great new things happening for giving deaf children options. Read more about the issue and the Sound Beginnings Program in Logan, with Dr. Karl White here: http://www.usu.edu/research/news/newsdetail.cfm?ID=347

JOURNEY to HEAR

A very exciting thing happened today!

My pal Michelle A and I went into a bank (!) and opened a bank account for The Journey to Hear Foundation. Sounds simple and yet it was the pinnacle experience of over a year's worth of work -- work that I have a hunch is just beginning.

We had to register as a corporation with the state and then get a tax ID number, not really huge tasks and yet one huge insurance battle, disputes with the school for the deaf, visits to the legislators, charter schools, a few trips for the cause to DC, Atlanta, California and Snowbird (UT), numerous meetings with parents, an architect, poo-poo head administrators, devoted teachers AND!!! three cochlear implant operations (on three different children of ours) and about a bazillion visits to audiologists have tripped us up.

I am looking forward to writing more about creating a logo, forming a board of directors, fundraising, building a building, serving children and families with deaf children in Utah County.