Hey JT, in NYC,
[Mid-life crisis] I get it. Really get it.
The other day this guy insulted the needle books that I'm trying to sell on ETSY (Ugh. Long story.) Suggested that I'd sell them for, what?, $5.00 each. I'm thinking +$30.
Then a b*tchmom at ballet asked me if my GRANDDAUGHTER was in the class. I looked pretty damn hep that day too. She was sloppy & preggo but I wasn't going to be so classless as to ask her when she was due. Then, when she found out that darling M is my DAUGHTER she crassly said, "So, tell me about M. What's THAT on her head?" Young idiot.
At a party for the Chinese New Year every single conversation descended into yet another laundry list of C's heath issues. I kept excusing myself, finally just waiting in the car, big day the next day.
On Thursday, coming home from the hospital with C, I saw a huge billboard advertising Blue Oyster Cult! They are playing Wendover, NV. I am NO fan of BOC, nor Wendover, but suddenly it seemed like a great idea. Just get me outta here!
The 40's are rough. That feeling of relentlessly putting one foot in front of the other is wearing on the bones and soul. Greatness though, is wasted on the young and also not exclusively theirs. Keep writing. Keep loving. Keep moving forward.
xoxo
H
Glad you liked the card. Would have liked to see you more while in UT.
Showing posts with label Deaf Issues. Show all posts
Showing posts with label Deaf Issues. Show all posts
06 February 2011
06 January 2009
Kudos for KSL!!!
Thanks to everyone who told me about this story on KSL-5. The Cedar City family's plight is exactly the same as ours. Now that my computer is back on my desk I finally am able to look up the story. Here is the link:
http://www.ksl.com/index.php?nid=148&sid=5047066
The following is my comment:
Thank you KSL for covering this story!
My son Nathan also needs a second implant. We fought the fight with SelectMed as well. (They are indeed SELECTive.) On the day of the final appeal the Let Them Hear attorney flew in from CA, we had a journalist there, I showed a video and had a brief presentation... it took 11 months to get to that point and then, surprise surprise, my phone rang as we were driving out of the parking lot and we were told that just that day they had changed their policy regarding cochlear implants. Nathan was 5 at the time and was so happy! He, and his sister, were born with a condition that caused their hearing to deteriorate. Their hearing issue is our family's only major health issue.
The 11 months cost him the ability to differentiate many sounds and his speech is very affected. During that time he was angry, destructive and very lonely. His is still frustrated and often isolates himself. He spends a lot of time with books.
As small business owners our insurance rates went up and up as our coverage went down. It was especially frustrating for us since we didn't qualify for medicaid and would have to completely deplete our savings, and borrow money, at the time we were told it would cost us $80,000 for one implant. Time was also of the essence since people learn to speak/hear best in early childhood. Hearing, in general, is an invisible and discriminated disability. The hearing aids ($2000 each) and batteries really add up. When we appealed for hearing aid coverage, for our infant, we were told they are cosmetic.
Another issue in Utah is the Utah Schools for the Deaf and Blind. KSL please visit the Utah County preschool facilities. 25 year old, broken, NOISY trailers. Please chat with the entrenched, retrogressive administration. Ask about the USDB's budget and especially about weak services for the lucky Utah children who have implants, especially compared with other states' programs.
Thanks for listening!
http://www.ksl.com/index.php?nid=148&sid=5047066
The following is my comment:
Thank you KSL for covering this story!
My son Nathan also needs a second implant. We fought the fight with SelectMed as well. (They are indeed SELECTive.) On the day of the final appeal the Let Them Hear attorney flew in from CA, we had a journalist there, I showed a video and had a brief presentation... it took 11 months to get to that point and then, surprise surprise, my phone rang as we were driving out of the parking lot and we were told that just that day they had changed their policy regarding cochlear implants. Nathan was 5 at the time and was so happy! He, and his sister, were born with a condition that caused their hearing to deteriorate. Their hearing issue is our family's only major health issue.
The 11 months cost him the ability to differentiate many sounds and his speech is very affected. During that time he was angry, destructive and very lonely. His is still frustrated and often isolates himself. He spends a lot of time with books.
As small business owners our insurance rates went up and up as our coverage went down. It was especially frustrating for us since we didn't qualify for medicaid and would have to completely deplete our savings, and borrow money, at the time we were told it would cost us $80,000 for one implant. Time was also of the essence since people learn to speak/hear best in early childhood. Hearing, in general, is an invisible and discriminated disability. The hearing aids ($2000 each) and batteries really add up. When we appealed for hearing aid coverage, for our infant, we were told they are cosmetic.
Another issue in Utah is the Utah Schools for the Deaf and Blind. KSL please visit the Utah County preschool facilities. 25 year old, broken, NOISY trailers. Please chat with the entrenched, retrogressive administration. Ask about the USDB's budget and especially about weak services for the lucky Utah children who have implants, especially compared with other states' programs.
Thanks for listening!
25 July 2008
G is for GLASBERGEN.
This made C laugh. I grinned. Thanks Glasbergen!
The studio is so lovely, spare and workable! Still have more papers to go through. Took the entire pile(s) to the dining room then paid a young friend to make it neat and tidy. I'll get to it after it ages for a while, and after the dates expire.
Quote I found, in the mess, for a plate:
One must think like a hero to behave like a merely decent human being.
May Sarton.
My children will say, "What does that Even mean Mom?!" Ugh.
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
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
14 July 2008
C is for Car Trip Critters.
Here is N with one of his recent car trip critters. Playdoh/wikistix aren't really so great for car trips. N made fantastic things on the windows; the window in the WAY back of the van.
He is a doll. Wish his CI was working better. On Saturday he said that he thinks M hears better than he does. That is an amazing statement. She does hear better, how does he know that? Chance pointed it out to him and N has noticed too.
:(
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 ...
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 ...
24 June 2008
M is for Matchbooks & ASL...
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.
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.
03 June 2007
DMV Portrait, Deafness & My Children
The picture of me is my actual DMV photo. Before being the Guest Mom [on designmom.com 14-19 May 2007] I thought, what picture should I use? I'd like my portrait taken for the Design Mom spot ... but I want to look good, like my DMV photo...(chuckle chuckle) No one in the world would believe that, but it's true! My favorite denim jacket. Favorite scarf. Slightly funky, slightly sparkly.
I've decided to use that photo because it helps illustrate a story that goes with it. I went to the DMV dreading the ordeal -- the photos. the test, the waiting. None of that happened. I didn't need the test, the lines were reasonable and the woman who took the photo was very nice, cracked a joke or two, smiled and commented on my first photo. She showed it to me and then asked if I wanted to take it again. She loved my scarf. My mom gave it to me. I love all the colors and (!) it sparkles too!
She took my picture 3 times and let me choose the best. I like the picture. I really like pulling out my ID.
She asked me questions on the Drivers License application. Address correct? Yes. Age? Yes. Donor? Yes. Is it correct that you want to donate $2.00 to the blind? Yes.
At this point I became a bit more friendly, taking her cue from earlier. "I wonder why they don't have a donation spot for the deaf? Why the blind and not the deaf?" I wondered out loud.
Her response was, "Yeah, I don't know. Especially since it is much, much, much, much, much, much, much worse to be deaf than blind."
I paused, then said, "Well, I think it is only much worse. You can keep a few of the much-es."
She went on to explain the social barriers of deafness. She was kind. Finially I said something like, "Two of my children are deaf and it can be a drag, a big repetitive drag, but it is not the worst thing and I don't think it is worse than being blind. My children can do anything -- play, read, use the computer, run, draw, cook. With fantastic modern technology they can listen and with therapy speak very very well, and eventually drive."
She gave this friendly apology/explaination for what she had said, and for me having 2 deaf children. She then asked a few more DMV questions, collected my money and I went on my way.
This story perhaps is unusual because it is about a kind and generous DMV worker, but it is so typical of my daily experiences.
I meet many friendly people, others who stare, or let their children stare, at my children until I explain to them they my children are deaf and have COCHLEAR IMPLANTS. The cochlear implant helps them hear. Other people, not professional speech therapists, act as though they know more than I do; as in a relative telling me my son has "bunched Rs," he doesn't. Many people like to share their opinion about deafness and how beautiful sign language is. Why don't we sign more? I explain that a child can really only learn to talk in the first 6 years of life, the earlier the better. After that spoken language will always be like speaking a foreign language. My children will probably learn sign language at some point and that is fine with us.
People like to share assumptions about a deaf person's abilities, comparisons to other disabilities and stories of family members. I hear dire stories of unethical audiologists selling over priced hearing aids and self-interested insurance companies denying coverage to children, and adults, for anything related to deafness. (We personally have dealt with medical insurance issues a lot.)
Whether it is deafness, cochlear implants, how cochlear implants work, why and how my children need them, genetics and our family history, or schools my children attend (Nathan (6) is the top of his mainstream class), it can be tiresome. I really don't mind. I have to explain everything to everyone, all the time.
My favorite, and perhaps the most surprising thing, I need to explain to people is why we want to give our deaf children the gift of spoken language and why, when at home and out and about, I must repeat myself over and over, again and again, with speech and sign. This is not redundant. It is educational, to help my children (hearing or not) perceive the subtle nuances of sound so they can learn to express themselves beautifully and at the same time educate everyone who asks, or looks at them askew.
17 May 2007
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
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
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