any advice would be wonderful!

Hello francis,
Hope be you supportive share to opinion! we help you :)
 
well, frankie has his sedated abr this friday..it WAS going to be in august but they felt bad for him and bumped him up!
it was interesting, yesterday..we took him to a fireworks show, along with his siblings and you know, he didnt react at all! we were about 100 feet away and he was just sitting there playing, not even realizing how loud it was. he also had his new speech therapist out today, and we are waiting to see how his swallow study and stuff goes. poor kid, he is so tired of doctors!!
 
frankiesmom said:
well, frankie has his sedated abr this friday..it WAS going to be in august but they felt bad for him and bumped him up!
it was interesting, yesterday..we took him to a fireworks show, along with his siblings and you know, he didnt react at all! we were about 100 feet away and he was just sitting there playing, not even realizing how loud it was. he also had his new speech therapist out today, and we are waiting to see how his swallow study and stuff goes. poor kid, he is so tired of doctors!!
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I hope all goes well with the sedated ABR. Yep, they all get tired of being poked and prodded at. Shame we have to put them through it.
 
it sure is! he had his swallow study this morning, and they said that it looks like he hasnt learned how to actually chew things, which is making him gag. poor thing has had so many tests, with more to come..but hopefully we will get an idea of what is going on. i am hoping that we keep him tired enough for this test tomorrow though, i am very eager to see what is going on!!
 
frankiesmom said:
it sure is! he had his swallow study this morning, and they said that it looks like he hasnt learned how to actually chew things, which is making him gag. poor thing has had so many tests, with more to come..but hopefully we will get an idea of what is going on. i am hoping that we keep him tired enough for this test tomorrow though, i am very eager to see what is going on!!
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I'm sure you are anxious for answers. I hope all goes well, and you find out what you need to.
 
and found the different places for therapy, tests, etc
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frankiesmom, have they estimated how delayed he is yet? I thought they couldn't tell how delayed a kid with cognitive issues is until they were at least a toddler. But, it can be hard to find resources for dhh kids with more severe cognitive handicaps. Like the problem is that, while there are a lot of resources for kids with mild and mild/moderate cognitive disabilty, as well as SMH (severe multihandicapped) programs for kids with severe and profound issues (where multiple issues are very very common), there's not a lot for kids who are deaf and have multiple issues, but aren't severe and profound. Perkins School for the Blind has opened up their Deaf-Blind program to deaf kids with significent delays, and I predict that other deaf blind programs at Schools for the Blind will prolly follow suit.
 
he is a toddler..they said that he is at a 5 month level. that aside, we found out from the sedated abr that he has severe hearing loss in both ears..does this mean he is deaf/partially deaf/hard of hearing..or what? and i agree with you, i am coming up empty handed for anything like that..what i am wondering is how well hearing aids will help him..she said that his hearing loss is all the same..not sure what that means but she said that sometimes, there are different responses to different pitches, etc.
so many questions, it seems!
 
ok..i just spoke with the place who will be doing his hearing aids..they said that if he is not benefiting from them after 3 months, they would refer him to get implants..would this be a good idea? my husband is against it and says he wants to wait until he is older to make his own decision..i dont know though. will either of these aid him in talking and hearing normally, or will he still have trouble?
 
Search for GrendelQ's posts. Her daughter was implanted young and both Grendel and the daughter are pleased with the outcome.

He won't hear "normally," but he should be able to hear something and learn to make sense of it. The earlier the better, is the conventional wisdom, to get the maximum benefit. The longer he has no sound input, the harder it will be for his brain to interpret it, if you wait.

Do your research and see what seems to make the most sense to you.
 
I have a severe loss also
try researching on some great pediatric hearing aids like Oticon, Phonak etc.
I also have an Oticon pedatric hearing aid (Safari P 600) *they come in SP for severe/profound loss*
you can also look into the Naida too :D
 
The earlier the better, is the conventional wisdom, to get the maximum benefit. The longer he has no sound input, the harder it will be for his brain to interpret it, if you wait.
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On the other hand, one thing that annoys me to NO END is the assumption that deaf= deep profound, and if you don't aid or implant instantly, the kid will end up an oral failure. It's good to implant and aid early, but on the other hand, does a few months really make that much of a difference? I mean my generation (who were kids only about 13 years ago) weren't dx or even AIDED until we were two or three, and we've done decently.
 
frankiesmom said:
ok..i just spoke with the place who will be doing his hearing aids..they said that if he is not benefiting from them after 3 months, they would refer him to get implants..would this be a good idea? my husband is against it and says he wants to wait until he is older to make his own decision..i dont know though. will either of these aid him in talking and hearing normally, or will he still have trouble?
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Personally I agree with your husband. Let him make his own decisions on if he wants to get CI's. Teach him Sign language, even if he is currently at a 5 month old level, he can still learn sign. Start with some basics, food, milk, mommy, daddy. When he masters those signs, go on to more. I would suggest you and your husband take sign classes, as well as your children. getting language into him, and letting him start expressing himself is a huge deal... it will help him more than you think.

He will never hear normally, but that is ok. He will have access to a culture that is beyond many peoples wildest dreams! He prob won't speak like your other children, or what you are referring to as "normal", but he may not have even if he wasn't hoh with what you are describing. If you want him to speak, just please be sure he knows ASL as well. Please do not put him into an oral school, where the use of sign is prohibited. There are many schools who are bi-cultural and bi-lingual schools, meaning they focus on the home culture as well as Deaf culture, and they do both speech and Sign. This may be the best place for you little guy.
Also make sure he gets into a Early Intervention program, for both his hearing and his other delays. You will be amazed at what he can do.
 
I am very excited that you're doing a full toolbox. And Frankiesmom, I had mild but still significent issues myself. I know parents are taught to greive when their kid ends up showing delays. However, I really think doctors and therapists should tell parents that while their kid may have developmental issues, the future is still a really huge question mark. There are still many many possibilties out there, and except for severe things like Tay Sachs, nobody knows how much a kid with developmental delay will be able to acheive. Heck nobody knows how much an "average" kid will be able to acheive either.
 
i hear that..my oldest..who is 18..i am amazed that he graduated and joined the navy..the boy lives for controversy! *and annoying his mom/little sister*
i think it also stings a bit because my ever so lovely mother in law told my husband 4 years ago that she NEVER wanted to see him or our kids again because they had my "screwed up genes". i have no clue why she said that or what she meant, because we didnt have francis then but it made me wonder..do i have messed up genes, and is this even genetic? i was glad at the time because it gave me an extremely easy way out of ever dealing with her weirdness again, though.
 
Hi FrankiesMom,

I'm sure this has been a really scary time for you. I wish the best for you and your son.

I'm not an expert yet, but I'm a college sr. studying to be a Speech Pathologist.

If you haven't seen a Speech Pathologist yet, this is their area of expertise - they could help figure out what's happening.

I read the piece you mentioned about his swallowing....has he had any tremors or seizures, anything like that? Has Francis had a "tipsy" gait about him like he's 'drunk?' - these are things I'd tell the doctor about if you see them.

As far as Cochlear Implants, I would want to see how he responds to baby sign first.

If he's getting some basic signs, that's fantastic - it means that he can learn language even if it's not spoken - a good indicator that facilitating his ability to hear means good things for his spoken language development down the road.

If the baby sign isn't very effective after a few months, then you'll have a better idea of where the problem might be - maybe some more information that the doctors can use.

In the mean time, I'd suggest using "Total Communication" with Francis - use lots baby sign, pictures, let him touch things and smell/taste them (safely) - still use lots of speech even if you think he can't fully hear you, he can see your mouth movements - anything that he can remember he can give meaning to it.

I hope this helps you and your son.

-MC
 
frankiesmom said:
ok..i just spoke with the place who will be doing his hearing aids..they said that if he is not benefiting from them after 3 months, they would refer him to get implants..would this be a good idea? my husband is against it and says he wants to wait until he is older to make his own decision..i dont know though. will either of these aid him in talking and hearing normally, or will he still have trouble?
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We were in this same situation with our daughter. When she failed the aid trial, we had the same feelings- at first. For us, the "CI referral" meant about a year's worth of testing before they would even ask us to set a surgery date, so we opted to proceed with the testing and research the upcoming decision. We did not want to be in the situation a year later where if we chose to proceed with implants, we would have expedited testing and /or a year delay down the road.

We started baby sign right away with amazing results. During the year long CI workup We also met with families with deaf children both implanted and not. We corresponded with teachers and school districts, CI company reps (good source of info, just remember who pays them), researchers in the USA and Israel, etc, etc.

We had so much information at the end of a year that the decision was relatively easy for our specific case.

The waiting for him to make his own decision bit... that is masking the truth. That means that you're really making a decision, and the decision is no CI. That's a perfectly fine decision to make, but as parents, it IS a decision. This choice lives in the present, and you can't kick the can down the road, because down the road will be a completely different set of circumstances.
 
i think the choice might be easier if he wasnt so delayed in other areas..we arent even sure he will/can learn even basic sign language yet..i hope he can! i have learned several basic baby signs over the past few days, and i have been trying to show him, but like with everything else we have shown him, its not important to him, and that isnt bad at all, that is just the way he is right now. he has 3 baskets of baby toys that light up, make noise, etc and a whole shelf of baby books, and he only plays with 2 of the toys, and the rest of the time, he spends being rocked by me, drinking his bottle, or watching his brothers. i mean..he cant even point or wave at this point, but we keep trying!
he walks ok, except for the head tilting thing..he will be sitting/walking and all of a sudden, cock his head completely to one side for a few seconds..sometimes, if hes sitting down, he will do it until he falls over. he also has started smacking the side of his head periodically and he will also hold up one hand, stare at it very intently and then go on with what hes doing.
 
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