...from Parenting Magazine

Just as a fyi, I was reading Parenting magazine and they reported in their Bites You Need To Know on page 46,

"Music to their ears
Children with cochlear implants-electronic devices that restore partial hearing to the hearing impaired-have improved speech and language skills, but now a new study shows they may have improved social lives, too. Children in the study ranked their quality of life equal to that of normally hearing peers."

I think we've all read this in other places as well but I thought it was neat to see it in the magazine!

The 8 hr trip.......

actually turned in to only six hours!! They cooperated and did well...considering we had four ears to map today. Gage pushed his trucks and played in the floor after the heated battles between he and Emily one of the audiologists(listening games). Then it was Brook's turn and she did just as fabulous. Now, I'm not saying they completely behaved, in fact we did NOT stop at the park afterward due to some inappropriate actions/behaviors. But we were home two hrs before I thought and I'm going to sit on the patio and read for a few minutes to unwind but an overall pleasant trip, I'm even taking them both back next month for Gage's next mapping and Brook's booth testing (all the same day).

If you haven't seen Riley on Bama Ears click here, cute video, the story is "Tiny Dancer" and shows her listening and keeping up w/the music and routine...very impressive.

Also, final survey results before I close it out, again remember, these results are from all over the US.

64.3% agree it's very important to have even reception knowledgeable about hearing loss in the ENT's office and the audiologist's office.

46.4% want more parent group meetings w/professionals attending, 25% want the pros to stay at home and 32.1% don't have time for group meetings (this didn't surprise me)

61% are very open discussing scheduling conflicts, discipline, at-home therapy, etc. w/their professionals

Less than a third of people live within a 30 min drive of their clinics and of the one's who drive 30+ miles,57.1% say the service is well worth it.

57% say they think their professionals understand some of the stresses of multiple appts./school issues and therapy issues some parents have.

68% of parents who took the survey say they connect w/other parents at least weekly in some form or fashion (blogs, forums, email, etc.) but almost all say the professionals did not provide the information.

and duntataduh......79% say that professionals should provide resources to parents such as local blogs, forums, or parent contact information such as email addresses of local parents who are willing to help. (p.s. I know my clinics do this because I'm contacted on occasion from parents and they also have my book in their library for parents to borrow.)

Gotta run, my sunny patio awaits!

Survey Results (so far)

So people from all over the U.S. took this survey. It's not formal at all, I made it up and was just curious about it. You can still take it Click Here to take survey if you are a parent of a child or children with hearing loss. Here are the results thus far and a couple surprised me a bit but keep in mind we are from all over and use various clinics and have various experiences.... I apologize for my font sizes getting out of control but I didn't have time to fix it, sorry!

56.5% say that it's extremely important for all staff (including reception!) to be fairly knowledgeable about hearing loss, hearing aids, BAHAs and CIs at the ENT's office and/or audiologist's office. One person noted that these are the people representing that organization being the first person of contact and they should be knowledgeable also about how to communicate w/those with hearing loss.

34.8% say it's only somewhat important for the full staff (including front desk) to be knowledgeable and
8.7% say it's not that important, they just explain what's not understood

52.2% say they want to see more parent group meetings with professionals attending (this one surprised me a little) and
26.1% say more meeting without professionals, parents only
26.1% also say they do not have time for group meetings ... some noted that people rarely show up for these meetings and several asked for some meeting w/pros and some with parents only...sort of an even mix

65.2% say they are very open discussing issues such as behavior, discipline, at-home therapy and scheduling conflict with these professionals.
26.1% say somewhat comfortable

8.7% want to keep this discussion between parents only... someone noted that parents are just better sounding boards for these issues

56.5% are driving (even flying) more than 30 minutes but say the service is well worth it
26.1% are within a 30 min drive and
4.3% have no choice, the drive the long distances because they have to

13% say the travel is highly inconvenient and causes added stresses and as one commenter noted, It's not very convenient but the service is worth it

65.2% agree that their clinics try to reduce these stresses making things as convenient as possible
26.1% say they don't think their professionals have a clue what it's like and

8.7% are undecided...the comments here again suggest weekend therapy appts. and also noted was that they don't feel some professionals know what it's like to ride in a car for an hour or more with a newly diagnosed child who's hungry, fussy, sleepy, and frazzled by the time they get to the appointment

43.5% claim to have stresses at times over all the appointments but they did not have suggestions for their professionals while
30.4% did, here's what they say: some want evening or weekend appointments and some just want their clinicians to stop rescheduling unless it's EXTREMELY necessary. People have to take off from work and some even have to change flight plans when their professionals reschedule! Some are not getting automated reminders for appts. Some people have to call around to many offices before they actually locate the professional they are looking for since they work at different offices...can we get a central number please! (I feel for ya on that one, luckily mine works in one location) and someone else has to lug around audiology records or call around to have them sent from here to there when their idea to have a central "bank" for these records so they are all located in one area and accessible to the other professionals that work with the child. And still, by far, the biggest request is encouragement!!! One person noted their doc gave them a "he's perfect" at a check up and that made her day! Another suggests that these professionals offer encouragement even when the child isn't progressing as fast as they feel they should with each "assignment" (referring to the therapy) and she also notes "It is not motivating to leave a therapy session feeling like a failure." !!! nice work guys!

26.1% don't have additional stresses due to appointments.

86.9% connect with families weekly (at least) though most of these resources were not provided by the professionals
13% occasionally connect via forums, email or blogs while

0% say they do not have the time or interest

82.6% want their professionals to give them resources like local blog addresses or forums or email addresses to connect with other local parents !!!
13% said they did not want this info from their professionals and
4.3% were undecided

if the results change by much I'll re post the results over the weekend........thank you for participating.

I Made a Survey

I finally did a survey. I have other questions I want to eventually ask so I did a tester survey here. Please feel free to answer the nine questions, really short survey and these results will be posted next week on my blog. It's anonymous, you don't even put a name on it so parents of hearing impaired kiddos, click below to visit the survey.
Click Here to take survey