Introductions

[Karen Putz]

Hi everyone! I figured it was time for some introductions now that we've got a couple of parents here!

I'm a deaf mom of three deaf and hard of hearing kids-- two teens and one tween. In my family, we have a rare gene that passes on hearing loss via the females in the family. I was born hearing, grew up hard of hearing and became deaf at the age of nineteen after a fall from barefooting (waterskiing on bare feet). My hubby is also deaf.

I blog at A Deaf Mom Shares Her World and I run the Jobs, Careers and Callings website that features deaf/hard of hearing people at work. I also blog at Chicago Moms Blog, Disaboom and Parenting Squad.

Jump right in and tell us about yourself and your family!

[Tara Holcomb]

Hi Mommies! I got a link to this website through a friend and it looks interesting. I'd love to connect with other mothers, although I rarely get the chance to use the internet with a very active 17-month-old boy. I'm a Deaf mother to Pax, who is also Deaf. We live in Fremont, California and he will start "school" in January, attending the infant class at California School for the Deaf (CSD) three times a week for a couple of hours. I cannot believe how fast time has flown by. I attended the school growing up, so I know it will be a great place for Pax. I am constantly amazed at my little guy - he is learning so much everyday. I've lost count of how many signs he knows. He recently started to do three-word combinations such as (DRINK ORANGE JUICE, DOG GOOD NIGHT, MOM DRIVE BYE, etc.) I am a very proud first-time mother but it is definitely a bit daunting trying to navigate the deaf education system. I look forward to getting to know all of you.

[drayden's mommie]

Hello-
Im Jessie and I have 2 children. My daughter is 6 and hearing. My son is 8 months and has a mild to moderate hearing loss bilaterally. We knew my son had a hearing loss right before we came home from the hospital. He got his hearing aids at around 4 months of age. So the biggest struggle is just getting him to keep them in. I also have struggles with the daycare keeping them in and out of other kids mouths. I am also a single mom too which makes it even more difficult to deal with. My older daughter just doesn't understand why her little brother doesn't hear so well. So Im looking for people who have been there and can help me through this. And everyone here seems so willing to help each other out.

[*Katrina*]

Hi! I'm Katrina. I just found this site last night when I was searching for new ways to keep my daughter's hearing aids in. I have 4 children, O is 10 (hearing), J is 8 (hearing), A is 3 (hearing) and Kk just turned 1 and she has bilateral hearing loss. We think it's somewhere around 55 loss in her right ear and 85 in her left. I say think because I thought that we had completed 2 separate ABR's but after getting fed up with Duke's audiology dept, we switched to Chapel Hill, and they let me know that they didn't actually have a compete ABR. @@ I was not happy. So we are scheduled for possible tubes and a sedated ABR in March. I wish it were sooner but they are so dang popular since everywhere else seems to not know what the heck they're doing. :(

Kk has Klippel Feil syndrome and with that she has other health issues that tie into her hearing loss. It seems we are constantly at dr's appointments. Every week we have 2 PT sessions, 1 OT, EI and a wonderful lady comes to our home and teaches me ASL. So everyweek we have at least 5 appointments. I feel tired just typing that.

I really have a hard time keeping dd hearing aids in. She's had them since she was 4 months old, but refuses to use them consistantly. I have tried hats but she can pull them off or untie them... (I currently have a new pattern rolling around in my head to try and combat that problem). She has super sensitive skin so I'm reluctant to try tape. She really just likes her ears. She wants to play with her ears and since there is something there to play with... all the better! She also just got glasses so that is another challenge to keep those on as well.

I guess that's us in a rather long nut shell. :)

[Ambulance Mommy]

Hi! I just joined today! :) (2/18/09) My 2 year old has a unilateral SNHL, and I'm looking forward to connecting with other families!

One of my biggest wishes is to find some other families in our area, to maybe start a playgroup? Nothing could be more awesome than finding some other families who "get it." Anyone in the Fairfield County, CT area?

[Li-Li's Mom]

Hi Karen, hi everyone! I should have introduced our family some time ago: my husband John and I adopted our wonderful little Anna-Li (we call her Li-Li) from the HengFeng Social Welfare Institute about 4 hours from Nanchang, China in Feb 2007 when she was just a wee 1 YO. We quickly found that she was profoundly, bilaterally deaf and began learning ASL as a family and participating in ASL-based early intervention as fast as we could. Li-Li's first cochlear implant was activated in Oct '07, and her 2nd in October '08, with much thanks to the brilliant and comically acerbic Dr. Roberson. She has been participating in 3X weekly aural rehabilitation sessions with 3 fantastic SLPs and attended an ASL/English language daycare center(we both work full time) at a bi-bi school about an hour away from our home in MA -- the Learning Center for the Deaf in Framingham -- for the past 18 months until she turned 3 two weeks ago. She has just started in a self-contained "acoustic access" preK class of 6 deaf kids w/CIs and a CODA at TLC, thanks to an amazing, heartwarming and painless IEP and placement process led by our local school district and our wonderful Early Intervention program, with tremendous support by Children's Hospital Boston's Deaf & Hard of Hearing Program and their CI Clinic. With all of this incredible support, she's speaking, hearing and signing with 'mild language delays' according to her most recent evaluations.

I am, of course, impatiently waiting for her to begin reciting Shakespeare from memory, but for the moment I'm thrilled with her fine command of the Ling sounds, the occasional 5 word sentence, some impromptu (grammatically correct) ASL translations of her favorite movie moments, and a pitch perfect rendition of her favorite Feist song (1234). But we do wrangle with one major developmental delay: after cruising through the terrible twos with maybe one or two tantrums at the very most, we're only now experiencing The Terrible Twos, at the ripe old age of 3. We just had to develop that independent spirit, didn't we?

We really look forward to being part of this group (although I feel like I know so many of you already from your blogs)!

Beth (Li-Li's Mom), our site: http://grendelskitchen.com (oh I know, it's been forever since I've posted, I'll fix that soon)

[Avery's Mom]

Hi. I am the mother of two girls. My oldest is four and my youngest is 19 months. My 19 month-old was born with a severe bilateral hearing impairment. It took us 11 months to get all of the tests completed and the hearing aids as a side effect she is developmentally delayed as well. She is signing food and bye. She also blows kisses. She has had her hearing aids for nine months and has just started saying mama.

We are working with physical, occupational, and speech therapists as well as the hearing specialist and audiologist to get her communicating.

[Mary Jo Wildman]

Hi Jessie. I can remember when I was having issues with my caretaker trying to get my daughter to wear her hearing aids as an infant. She had no problem putting on my son's aids (he's 2 years older than her). Granted that I was fortunate to have a caretaker at home and didn't have to deal with daycare issues you have mentioned (keeping them on, out of his and other children's mouths), why not for the time being until your son passes the exploring stage of discovering his ears, aids, putting everything in his mouth, just leave the aids at home. Put his aids on each and everytime he's with you and under your supervision. By the time he's 15 months old, he should be able to wear his aids without even realizing that he has them on. I know and totally understand early intervention is the best route because I believe in that (my kids are 14 and12 and have been in regular hearing class since the day they walked into pre-school). My husband (he's hearing impaired) and I spent a lot of our time with our children by reading, teaching and showing them the way. We never treated our children differently from their peers.

As for your daughter trying to understand why her brother can't hear so well. Why don't you do what my mom did for my siblings? (I'm hearing impaired and 2nd oldest of 6 kids). What my mom did was put cotton balls in their ears, and turned the tv volume very soft. She then talked softly to them and explained that the muffled or soft sounds (like s, ch, etc) that you can barely or can't hear is what your sister can hear. When you are talking to your sister, don't shout, go up to her, tap on her shoulder to let her know that you're talking to her. Also, look at her, let her read your lips, don't mumble or talk behind her back. With time, patience and friendly reminders for your daughter as she grasp this understanding, she will soon understand why her brother can't hear so well.

Let me know if this works for you.

drayden's mommie said:

Hello-
Im Jessie and I have 2 children. My daughter is 6 and hearing. My son is 8 months and has a mild to moderate hearing loss bilaterally. We knew my son had a hearing loss right before we came home from the hospital. He got his hearing aids at around 4 months of age. So the biggest struggle is just getting him to keep them in. I also have struggles with the daycare keeping them in and out of other kids mouths. I am also a single mom too which makes it even more difficult to deal with. My older daughter just doesn't understand why her little brother doesn't hear so well. So Im looking for people who have been there and can help me through this. And everyone here seems so willing to help each other out.

[Blair Klein]

Hi all! I'm a mom to three, with my oldest a 6 year old daughter who is hard of hearing with a progressive loss from unilateral Enlarged Vestibular Aqueduct syndrome (severe). I also have twin 4 year old sons who have normal hearing.

As rare as EVA is, my daughter has it only in her right ear, and we were told it's almost unheard of to have EVA unilaterally. Hers is not related to any of the genetic syndromes that also usually are the underlying cause. She does have an additional anomaly in her both ears (poor separation between middle & apical turns of cochlea) but there's not enough info to say if it's associated with hearing loss. We're ignoring that for now and focusing on what we do know.

She uses an FM System at school that has 100% turned around her learning experience. An absolutely amazing change in absorption as well as emotional happiness for her. HOW I WISH this group had existed when we were dealing with the school on what she did and didn't need!! Her loss was diagnosed 1 month before Kindergarten began and the exact cause 1 week before, and we were completely uninformed about managing any of the school process!

I've found it hard to find a support place in real world for parents of deaf/hoh that can accept my daughter's unilateral issues but still provide advice and support. So, I'm very excited about this group which seems open to all types and levels of hearing loss. Looking forward to the conversation!

[Kathleen Kaufman]

Hello- I am so excited for this wonderful website. I am a mom of two boys, Ethan and Max. Ethan is a hearing 4-year-old busy boy, and Max is my 4-month-old. We found out Max is profoundly deaf in both ears when he was 11-days-old. He was fitted with hearing aides at 5 weeks. I am very new to this community, as I still feel a bit overwhelmed. We have decided to set Max up with Cochlear Implants. It is such a huge decision, which is why I am so excited to find a resource such as this one. Looking forward to all the great advice!

[Jennifer Madrigal]

My name is Jennifer and I am the mother of 3 boys. Isaiah, 10 andrew almost 7 and Nicholas 5. Nicholas is deaf with a CI (which is mainly just a cool accessory that lets him hear the noise around him despite years of therapy) congenital nystagmus (eyes go side to side all the time) mild cp (can barely tell anymore but didn't walk till 3) and autism (really this s just what they call u when you have so many other things going on). But he is a basket of joy. nicholas is deaf due most likely to a genetic partial deletion on his second chromosome but seriously who really cares about all that, it was spontaneous and not heritditary (sp?) and we love him anyway. I am currently learning ASL and so is nicholas and my other boys..very slowly as my fingers seem to be mentally handicapped. LOL! Looking forward to talking with other parents since we are truly in our own club!

[Jennifer Madrigal]

hi, I flew from Ca to MA in October to go to a workshop at TLC. i can't tell u how much I loved this school! I want so badly to move there so nicholas can attend as they seem to really give a dang about ALL kinds of kids and be willing to do whats best for the child..you are a lucky gal to have found that school!
Li-Li's Mom said:

Hi Karen, hi everyone! I should have introduced our family some time ago: my husband John and I adopted our wonderful little Anna-Li (we call her Li-Li) from the HengFeng Social Welfare Institute about 4 hours from Nanchang, China in Feb 2007 when she was just a wee 1 YO. We quickly found that she was profoundly, bilaterally deaf and began learning ASL as a family and participating in ASL-based early intervention as fast as we could. Li-Li's first cochlear implant was activated in Oct '07, and her 2nd in October '08, with much thanks to the brilliant and comically acerbic Dr. Roberson. She has been participating in 3X weekly aural rehabilitation sessions with 3 fantastic SLPs and attended an ASL/English language daycare center(we both work full time) at a bi-bi school about an hour away from our home in MA -- the Learning Center for the Deaf in Framingham -- for the past 18 months until she turned 3 two weeks ago. She has just started in a self-contained "acoustic access" preK class of 6 deaf kids w/CIs and a CODA at TLC, thanks to an amazing, heartwarming and painless IEP and placement process led by our local school district and our wonderful Early Intervention program, with tremendous support by Children's Hospital Boston's Deaf & Hard of Hearing Program and their CI Clinic. With all of this incredible support, she's speaking, hearing and signing with 'mild language delays' according to her most recent evaluations.

I am, of course, impatiently waiting for her to begin reciting Shakespeare from memory, but for the moment I'm thrilled with her fine command of the Ling sounds, the occasional 5 word sentence, some impromptu (grammatically correct) ASL translations of her favorite movie moments, and a pitch perfect rendition of her favorite Feist song (1234). But we do wrangle with one major developmental delay: after cruising through the terrible twos with maybe one or two tantrums at the very most, we're only now experiencing The Terrible Twos, at the ripe old age of 3. We just had to develop that independent spirit, didn't we?

We really look forward to being part of this group (although I feel like I know so many of you already from your blogs)!

Beth (Li-Li's Mom), our site: http://grendelskitchen.com (oh I know, it's been forever since I've posted, I'll fix that soon)

[Joy Weiss]

Hello All. I'm Joy and my son Owen is turning two on Friday. He was born with moderate bilateral sensory-neural hearing loss. He's been wearing aids since he was 5 weeks old. Yup, we started early. Owen started with ASL, but has apparently decided that speaking and listening is more fun for the moment. He'll talk your ear off all day long. We're in Massachusetts and attending the amazing parent infant program at the Learning Center for the Deaf in Framingham, Ma. (Hi to Li-Li's Mom). We're raising Owen with both English and ASL and doing our best to keep up with his way to curious mind.