Momography: Parenting a Deaf Child
The Simple Truth...
Being a parent to your child is hard; being a parent to your child with special needs is H-A-R-D.
I am not an expert by any means, nor am I the perfect parent. Considering my most frequently uttered phrase is, "Well, there goes my Mother of the Year Award" (huffed out on a heavy sigh at least once a month over silly things like expecting my teenager to actually DO her homework assignment or her chores and what was I thinking, right??) Probably just as well I'm not after perfection, because I just don't see it happening....ever :o)
Raising a deaf child is definitely not without its own unique set of challenges, and I strongly encourage any parent to follow their OWN instincts in deciding what is best. No professional out there, no matter how dedicated, is going to love your child like you do. Am I suggesting you ignore all advice? Of course not! What I do suggest is that you make it your mission to learn everything you can so that YOU will be able to make informed decisions - after weighing all of the information you have - decisions that will be in the best interest of your child. Just because it's offered by an expert is no reason to blindly follow advice without question. There is no one size fits all cut and dried approach to something as special as your child (instead question away and check into everything to find what fits you best).
NOTE TO SELF
No professional out there, no matter how dedicated, is going to love my child like I do.
Some helpful sites - on types of hearing loss
- Visit UCSF Children's Hospital
Hearing can be tested at any age. Infants are screened for hearing loss shortly after birth, before leaving the hospital. However, hearing loss is not always present this early and can develop at any time...
- About Hearing Loss - Boys Town National Research Hospital
Boys Town National Research Hospital is recognized for model programs relating to childhood deafness, language and learning. The Hospital provides leading edge research in the identification of hearing loss, fitting of hearing aids, and educational m
- Hearing Aids [NIDCD Health Information]
What is a hearing aid and how does it help? A hearing aid has three basic parts: a microphone, amplifier, and speaker. The hearing aid receives sound through a microphone, which converts the sound waves to electrical signals and sends them to an amp
"Your daughter has a mild to moderate bilateral sensori-neural hearing loss."
This might sound a little strange but after I got over the initial shock, I could admit to being oddly relieved by her diagnosis. Why? Because our daughter wasn't diagnosed until age 4, and I had begun to question whether or not she might be autistic. Her speech had developed to a point, but her learning abilities were bizarrely inconsistent. Following some advice, I took her to an Audiologist and had her hearing tested: it revealed a 50db loss in both ears.
Now in case you're thinking I'm an idiot (and if I were you, I probably would be) our daughter's hearing loss was a progressive one; she was born hearing. Added to that was the fact that she had managed to develop elaborate coping skills to compensate for her slowly deteriorating hearing (who knew a 4 year old could teach herself to lip read?). Additionally, she always covered her ears at loud noises and cried during the fireworks (normal toddler behavior, right?) Of course the doctor we saw following her first test helped immeasurably by pooh-poohing the results and stating with absolute conviction that it would be impossible for her to function as well as she did with that level of hearing loss (sure made me feel A LOT better :o)
I asked the doctor about sign language, just trying to get a perspective. His response was immediate and on the verge of being explosive, "Absolutely not! Sign language is ridiculous, NO ONE needs to use it; especially not a child with a moderate hearing loss. She'll wear hearing aids and be fine, she will NEVER need sign language". He seemed to be so completely annoyed with me for simply having posed the question, I dropped the topic altogether. I was given a couple of places to contact for information, got a list of appointments for additional testing, and left feeling slightly dazed and very confused.
NOTE TO SELF
Our insurance company does not pay for hearing aids or ear molds.
A blank audiogram - For you to save or print
Ready or not...here I come!
We'll skim through an incredibly stressful time of struggling with the new learning curve in my life (or what I referred to as "My quest for information overload"). I left the doctor's office feeling troubled by his disparaging remarks about sign language and the word "never"; I tend to have a problem with blanket statements and absolutes (it's the never say never thing, I suppose :o) This was well before most people had internet access at home, so I began going to work an hour early every day to scour the internet for any and all information I could find on hearing loss and children.
I called the first number I had been given for a parental support group (I was fairly sure I was in dire need of some support, particularly since my husband was working out of town). I got an answering machine and left a message, thinking "One down, one to go" and dialed the second number to a local center serving the deaf and the blind. This time someone answered, and I was immediately transferred to the director. I told him our story and he suggested I might like to make an appointment to tour the school (there's a school?) He explained that there was indeed a school that my daughter could go to right away; it was about a 4-1/2 hour drive and she could come home on the bus periodically to visit (and of course for the summers). Blindsided by this unexpected proposal I thought, "She's only FOUR YEARS OLD". When I spoke the thought aloud, however, his response was the sooner the better; she definitely needed to be sent. I thanked him politely and hung up feeling dazed yet again. Surely that wasn't my only option...
I never did hear back from the parent support group, despite having left several rather desperate messages. We managed to get her hearing aids fitted, but had to change doctor's offices to do it. After riding the medical merry go round for three weeks straight and getting nowhere fast (they were unable to get accurate enough test results to fit her with hearing aids) I had had enough. At wits end, we finally found a wonderful new doctor an hour away and they not only managed to quickly (and accurately) test her hearing, she was fitted for her hearing aids and had ear molds poured in less than 3 hours (and after waiting 3 weeks that was pretty darn quick :o)
NOTE TO SELF
I didn't bring my daughter into this world for someone else to raise.
Visit these sites for some helpful information - Mark Droslbaugh's pages are wonderful!
- For Parents of Deaf Children
A resource page for parents of deaf children on Mark Drolsbaugh's Deaf Culture Online website.
- Baby Sign Language
A unique perspective of baby sign language from Mark Drolsbaugh, a deaf parent of hearing children.
- Communication Options
Alexander Graham Bell Association for the Deaf and Hard of Hearing
Early learning can be fun - Songs in sign
Buck the system
(and stick to your guns)
After careful consideration (and researching until my eyes crossed), we decided to mainstream our daughter in public school. She was enrolled in early intervention and began receiving speech therapy during the week at her daycare. The overall consensus on learning sign language remained the same: definitely not recommended at this time as it would ruin her speech among other things. Should she reach a point in her life that sign language became necessary, THEN the school system would teach it to her. While I understood their position (sort of), it seemed to me that a much better plan would be to go ahead and teach her to sign while she was still very young. That way should the need for signs ever arise, (in the vague and distant future) they would already be in place. Trying to teach a child an entire language in the event of an emergency just didn't fly for me: so against ALL professional advice, I decided to do it myself.
At the time I was working in an administrative office at a financial institution, and was introduced by a friend to a very brave customer who was deaf and had offered to teach me to sign. Armed with some very rusty knowledge of the A-B-C's, I began going to lunch 2-3 times per week with my new tutor. Looking back, I probably should have at least offered the poor woman some Tylenol for making it through what had to have been some seriously tedious lunches :o)
My sign language teacher rapidly became a wonderful friend and introduced me to the deaf community. Initially, I was absolutely terrified, but in spite of all the awful stories I had heard about the deaf community, (you know, like they chewed up hearing people and spit them out just for fun) they turned out to be one of the most welcoming groups of people I had ever met.
Some time after my daughter received her brand spanking new aids, her teacher spotted her throwing them across the playground at day care. When asked why she threw her hearing aids away, my daughter stated angrily that they were broken. After checking the batteries and testing the aids at home only to find nothing, a trip to the audiologist revealed that she had lost additional hearing (this would be the first of many times).
By the time she started first grade, our daughter had lost enough hearing to necessitate an interpreter (and golly, wasn't it a good thing we didn't wait to learn to sign?). Her speech was coming along beautifully, in spite of the hundreds of dire warnings I was given about teaching her to sign (as in: she would completely stop speaking, she would longer want to speak, it would ruin her existing speech, etc.) I've declared many times since, that this has been the Lord's little joke on me...most parents are begging their deaf child to speak and I'm forever telling mine to "HUSH" :o)
TOO FUNNY: My daughter loved her auditory trainer (shown in the picture) which sent her teacher's voice (via mic) straight into her ear from almost anywhere in the building. She was dawdling in the bathroom one morning - actually she was busy singing because the acoustics in there were just way too good to pass up - when her teacher told her to hurry and come back to class. When she still didn't return, her teacher walked across the hall to the restroom and found my daughter squatting down to peer under each of the lavatory doors saying, "Mrs. Forrester, are you in there??", looking for her teacher :o)
NOTE TO SELF
Every single professional thinks you are doing a terrible disservice to your child by teaching her to sign.
Educational Options for Deaf Children
- Deaf Education Options Guide
Deaf Education Options Guide: Educational Approaches, deaflinx.com, & Communication Modes
Help the teachers work with your child - Be an informative parent
KNOW ENOUGH TO HELP THEM HELP YOU
Nearly all of the teachers I've encountered are willing to go the extra mile to help a child, but most of them had never had a Hearing Impaired child in their classroom before mine. It is imperative that you help your child's teachers understand how this loss affects your child in everyday life and offer them some suggestions to ensure a successful year for everyone. Make sure you are realistic with your requests; bear in mind that teachers are terribly overburdened these days and most are doing the very best they can (I can say that honestly as I work in a school system :o)
KEEPING IT SIMPLE WORKS BEST
I always gave copies of the audiograms [shown above] to the school and the teachers with my daughter's aided and unaided results. To help further understanding, I also typed out the following page from "Little Bear" and suggested the teacher share it with the class (it really helps the other children to "see" the effect a hearing loss has):
WHAT YOU HEAR: "Father Bear Comes Home"
"Hello, Little Bear."
"Guess What!" said Little Bear
"Father Bear is coming home today."
"Is he?" said Hen.
WHAT A HEARING IMPAIRED CHILD HEARS: "----er B--r --m-- --m-"
"--llo, L-ttl- B--r."
"-ue-- --at-" --id -L-ttl- B--r.
"----er B--r -- --ming -om- -od--"
"I- -e-" --id --n.
It is also very important to make sure everyone clearly understands that hearing aids do NOT fix hearing the way that eyeglasses fix vision (a common misconception).
A small notebook sent back and forth to school helps you to keep up with the day to day happenings. Be realistic and don't expect your child's teacher to be able to chronicle their entire day, a short sentence or two from the teacher is plenty. Don't forget to return the favor if something upsetting has happened on the home front; too often a teachers only clue is behavioral.
Superduper Study Buddies
This program makes studying for spelling tests fun for deaf or hearing children. Create a custom word list using your child's spelling words and take the misery out of studying - my daughter loved using this program :o)
Make up your own wild and wacky sentences using your child's reading vocabulary list and help them to easily learn the definitions. Hint: Use the names of your child's friends and remember that the sillier the sentence, the more excited your child will be to see what you came up with next!
Take turns with your child and let them test your math skills. Hint: Get one wrong periodically and let them correct you (kids just love being able to tell an adult they got it wrong :o)
Help your child work with their teachers - Be an informed parent
DO WHATEVER IT TAKES
I printed out and sent this homemade behavior chart with stickers to my daughter's first school every single week. Did I have to? No, but I was doing everything I could to help everyone have a successful year. I selected two areas where I knew she would struggle, and two areas where I was pretty sure she would succeed.
A huge plastic jar on top of our refrigerator held a plethora of prizes. Every Friday, as long as she had at least 18 stickers (we got two "freebies", as anyone can have a difficult day) the chart was posted on the fridge and she was allowed to select a reward from the jar. Any and all visitors were encouraged to comment on her chart; she loved explaining to anyone and everyone how it worked.
BEWARE OF CROSSING THE LINE BETWEEN ACCOMMODATIONS and EXCUSES
The kindest thing you can do for your child is to expect them to follow the rules just like everybody else; this includes disciplining as warranted. There is a critical difference between making accommodations and making excuses (and once you start making excuses, the road will only get rougher). For example: Going through my daughter's signed papers one Friday afternoon, I noted with some surprise that she had failed her spelling test. Considering how hard we studied (she had gotten 100 on the mock test I gave her the day before) I could not believe she had done so poorly on it. I called her teacher to see what had happened, and found that she had asked the interpreter to go make some copies (without thinking) and then decided to go ahead and give the spelling test to the class. She was most apologetic and re-administered the test with the interpreter (who would be considered an accommodation) present. It was perfectly reasonable for her to retest with her interpreter, as it allowed her (as a hearing impaired student) to have equal access just like the rest of the students.
If, however, my daughter had failed the test because she did not study (for which she would be in big trouble at home :o) then allowing her to retest would be teaching her to use her hearing impairment as an excuse. This is a terrible lesson to teach a child and is not only counterproductive when trying to teach responsibility, it will cause untold difficulties socially by fostering resentment among their peers.
NOTE TO SELF
I DO believe in providing necessary accommodations for my child; I do NOT believe in making excuses.
Some Great Kid Motivators on Amazon - All kids love this stuff :o)
Meeting Heather Whitestone (the first deaf Miss America in 1995)
Mainstreaming may not be as easy as A-B-C...
...but it can be easy as Pie (Cherry, to be exact :o)
I wasn't long after my daughter started first grade (for the second time) that I knew we were going to have to do something different. I had learned - belatedly - that the school system had opted to split the Interpreter between my daughter and a student in another grade (a bubble-headed bureaucratic decision that originated in their central office). I had to find a way to help her more, but great job or not working 8 to 5 plus the commute, which made it 7 to 6, was definitely causing a major time problem. The question was, what could I do?? Private schools did not offer interpreters, and I certainly could not afford to stop working and home school.
After many prayers and much debate, we refinanced our home and restructured our finances. This enabled me to accept a much lower paying position as an Interpreter in an area school system. Not only did it add the much needed time together every day, we now had breaks and summers to utilize. Her grades improved and working in the school system helped immeasurably with our homework sessions (because now I had a clue).
One of the best teaching games [for a mainstreamed deaf student] I came across was in the third grade classroom where I began interpreting. It was a spelling game called "Cherry Pie". The students in the classroom all knew their manual alphabet and had been taught the signs for each spelling word. Standing in a large circle, the teacher would sign the word and going around the circle to the right each student would sign a letter to spell the word. After spelling the word, the next student had to sign the word and then sign "Cherry Pie". If they misspelled and signed the wrong letter, they were out and had to sit down. My student absolutely LOVED this game, as she could do it "by herself". I would sit nearby doing "important" things, like creating a giant ice cream sundae out of poster board to put on the classroom bulletin board. The other children loved it just as much as my student and I got a huge kick out of watching them fingerspelling the words around the circle. I passed this game on to my daughter's teachers and numerous others over the years with much success.
NOTE TO SELF
Sitting on the floor creating a giant ice cream sundae on colored posterboard has to be the coolest "job" in the world (Boo-Yeah :o)
The American Sign Language Alphabet
Be a parent to your child
When my daughter was in kindergarten, I remember telling a counselor at school (during a meeting) that her Hearing Impairment was not a handicap. No, her handicap as it were, was much bigger than that: It was C-U-T-E. Now cute can cause you all manner of grief as a parent, but a cute kid with visible hearing aids can spoil a child faster than you can say, "Time out!"
It is very hard to keep a child on an even keel, when everyone around you seems determined to indulge their every whim. Complete strangers have walked up and handed my child money because she was wearing hearing aids and they felt sorry for her. For those that were offended by my polite refusal, a visit to the Salvation Army bell ringer outside the store solved the problem (and if that was out of season, it went straight into the church offering plate :o) I had to tell the dentist and everywhere else we went to please allow my child the standard ONE prize (they wanted to give her two every time, just because she was so darn "cute").
We continued to socialize with the deaf, and it was easy to see how much that socialization meant to my daughter. Hearing parents that sign (a rarity) are held in very high regard by the deaf community for the simple fact that they love their child enough to learn to sign. My introductions to new people were always prefaced by a glowing dissertation and issued with pride, (it was a little embarrassing sometimes). The stories I heard about family life from some of the deaf adults broke my heart and helped me understand why they were so happy to have me around.
How would it feel to use the system described in the next paragraph to communicate with your family at home?
Lee (not his real name) was an adult in his 30s and had attended a regional school for the deaf (remember where I was supposed to send my daughter?) His family lived out in the country; his parents did not have a lot of money and were not very well educated. When Lee would come home to visit, he would have to write notes back and forth with his mother to communicate as neither of his parents could sign. If he wanted to talk to his stepfather, who could not read, he would have to write a note to his mother who would then read it to his stepfather. His stepfather would tell his mother whatever his answer was and then his mother would have to write it all down and hand it to Lee.
Can you imagine???
NOTE TO SELF
This one hurts my feelings...
90% of deaf children are born to hearing parents.
27% of parents with deaf children learn to use sign language
only 10% of that 27% are fluent.
Some helpful reads on parenting
The Great Debate....
To implant or not to implant
When our daughter was 8 or 9, my husband and I traveled to Children's Hospital in Birmingham to learn about a newer technology called a Cochlear Implant. Having done a bit of research on the subject of implants prior to making the trip, I faxed 3 pages of questions to the contact person at the hospital. I'm sure they've compiled additional data by now, but back then an awfully large portion of the answers to my questions were "not enough data available". We spent the morning watching the presentations and listening to the spiel. We watched two videos that supposedly represented both sides of the debate, but came across more biased toward implants than anything. My biggest concern had nothing to do with any of the content on the videos. It was performing major surgery on my child that was geared to "fix" something that was not life threatening. There was also no way to predict whether or not the implant would even help until several weeks post surgery. That made it a mighty big crapshoot.
When all was said and done, the implant didn't seem like the best idea at the time and we decided we would wait until our daughter was older and could share in the decision making process. The technology could only improve in the meantime, right?
Of the two people I met that had gotten an implant; neither of them were successful. One was a young man in his twenties, and the other was a girl that lived fairly close by who was only a few years older than our daughter. She grew up using cued speech and was not allowed to sign. It was easy to see how excited she was when she came to visit and told me about her upcoming surgery. I could feel myself getting excited for her the more she talked about it; right up until her parting sentence, "Finally, I'll be hearing just like everybody else!" With that comment, I had a terrible sinking sensation that her long-awaited procedure was doomed to disappoint (and I'm sorry to say it did). I remember thinking sadly that it was a shame she had not learned to accept herself as she was, and instead pinned all her hopes on a single surgical procedure to solve all her troubles. I still see her from time to time; she wears her implant even though it provides little benefit, and is still desperately unhappy.
The most important thing you can do for your child is love them unconditionally. My daughter has been raised to accept the fact that she is deaf, and she does not waste time wishing she were hearing (what would be the point?). Even if she does one day decide to get the implant, she will still be deaf...and that's okay with us (we love her just the way she is :o)
NOTE: For a great flip side, check out Kevin's wonderful success story (it's on my lensroll) ~ he has an implant and loves it :o)
NOTE TO SELF
Even if she does get the implant she will still be deaf,
and that's okay...(we love her just the way she is :o)
Sites with information on implants
- Medline Plus Encyclopedia
Both children and adults can be candidates for cochlear implantation. They may have been born deaf or become deaf after learning to speak. Children as young as 1 year old are now candidates for this surgery. Although adult and pediatric criteria are
- American Speech Language Hearing Association
What is a cochlear implant? A cochlear implant is a device that provides direct electrical stimulation to the auditory nerve. In sensorineural hearing loss where there is damage to the tiny hair cells in the cochlea, sound cannot reach the auditory n
Based on true stories
PLEASE NOTE: "Children of a Lessor God" is NOT recommended for anyone under 18. It illustrates with painful clarity the low self esteem felt by so many in the deaf community and the sad circumstances that arise because of it.
Well, that was then...
Epilogue (Take One)
It has been a long journey and it is far from over; our daughter's hearing has slowly deteriorated over the years (marked by 12 - count 'em 12) pairs of hearing aids and countless ear molds. They are, in case you are wondering, STILL not covered by our insurance. She is down to 1 now; the right ear having kicked the auditory bucket (er, so to speak) back in the third grade.
We've learned a lot about life and loving yourself the way God made you (and discussed the happy fact that there are neither hearing aids nor glasses in heaven). We are careful to focus on the positive and still talk about whether or not she wants the cochlear implant surgery someday (she does, but not right now Mom, okay?)
Our daughter is in high school now and getting ready to attend her first prom. Contrary to popular belief teaching her to sign did not ruin her ability to speak at all, she still talks incessantly (but now it's in TWO languages, sign AND speech :o)
Rochester Institute of Technology - Brand new support site for parents and teachers :o)
- RAISING & EDUCATING A DEAF CHILD
International experts answer your questions about the choices, controversies, and decisions faced by the parents and educators of deaf and hard-of-hearing children. Latest Questions and Answers...
And this is now...
Epilogue (Take Two)
It's so hard to believe our little girl is a senior! *Sniffle* The past 12 months have been amazing; she has blossomed into a lovely young woman (especially on the inside where it matters most!). And a "chance" meeting at a Baptist convention for the deaf at the end of her Junior year brought a wonderful young man into her life.
They've been dating for the past year (prom picture below this module) and although the "M" word has been mentioned, we agree that we should probably wait a while longer for that. Promise rings have been exchanged for now, and in the fall she'll be off to college in pursuit of the "other" love of her life: Woodworking (second photo below).
As a parent I know how blessed I am to have such a terrific teen on the verge of adulthood; but I sure am going to miss those precious little pigtails :o)
Want to see what she made me for Christmas the following year? - Amazing what a little college can do for your talent - Woot!
This is the world's most fantabulous scrapbooking cabinet (and yes I cried :o) Isn't it amazing?
HI Performers ~ this is so cool!
Thank you SO very much...
In the Potter's Hands
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