Early Intervention: The Missing Link

Deafdyke- he is mild. But the questions they ask to determine are just ridiculous. I realize there has to be a standard for schools and there are certain criteria to be met but really? One of the questions I was asked while he was being interviewed was could he hold a pencil correctly. Could he draw a circle if prompted or a straight line. None of which he could do all which apparently means that he is behind others his age. -- Something is going on with his nervous system, he doesn't register sensations normally. Like hot or cold or pain. Audiologist wants him to have an mri/ct and I opted out to have it done later. I feel like we can wait until he is 5 to see what's going on. I know it is silly but I feel like he is still to little for all the radiation that those things cause.

Csign- no fm system (yet). He is 3 going on 4 in February. Afternoon is DHH specific. I actually did not really know anything about using fm systems and have never asked. But there is an iep coming up in January so it's going on my list of things to ask. That was my main reason for joining alldeaf I need to know the correct questions to ask and what kind of answers I need to be getting.
 
Does he wear hearing aids or a CI? The school district kind of dropped the ball- he really should have an FM or Soundfield system in both placements, but especially the morning class if the teacher doesn't know how to sign.
 
He has hearing aids. I don't know if you have seen some of the other posts but it has been mentioned thus far by other posters that I am not necessarily in the best school district. If moving were an option at this point in time it would have been done already. Is an fm system something I could require on an IEP?
 
blondon704 said:
He has hearing aids. I don't know if you have seen some of the other posts but it has been mentioned thus far by other posters that I am not necessarily in the best school district. If moving were an option at this point in time it would have been done already. Is an fm system something I could require on an IEP?
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Absolutely. I had one for almost all my school years.

And you're right -- some school districts are better than others! Can you go to another school district (even without moving -- or is that still too far away?)
 
blondon704 said:
Deafdyke- he is mild. But the questions they ask to determine are just ridiculous. I realize there has to be a standard for schools and there are certain criteria to be met but really? One of the questions I was asked while he was being interviewed was could he hold a pencil correctly. Could he draw a circle if prompted or a straight line. None of which he could do all which apparently means that he is behind others his age. -- Something is going on with his nervous system, he doesn't register sensations normally. Like hot or cold or pain. Audiologist wants him to have an mri/ct and I opted out to have it done later. I feel like we can wait until he is 5 to see what's going on. I know it is silly but I feel like he is still to little for all the radiation that those things cause.

Csign- no fm system (yet). He is 3 going on 4 in February. Afternoon is DHH specific. I actually did not really know anything about using fm systems and have never asked. But there is an iep coming up in January so it's going on my list of things to ask. That was my main reason for joining alldeaf I need to know the correct questions to ask and what kind of answers I need to be getting.
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Have you ever had him evauluated through United Cerebal Palsy or Easter Seals?
They may be able to give you good info and ideas for accomondations! I don't know him of course.....but it sounds like he's kinda like I was as a kid...meaning like a kid with mild CP. It's good that he's getting educational placement in that area....which is good! Is it a general special needs program? I was in that kind of program for preschool! I know FM is controversial but you could experiment and see what works best for him.
 
deafdyke said:
Have you ever had him evauluated through United Cerebal Palsy or Easter Seals?
They may be able to give you good info and ideas for accomondations! I don't know him of course.....but it sounds like he's kinda like I was as a kid...meaning like a kid with mild CP. It's good that he's getting educational placement in that area....which is good! Is it a general special needs program? I was in that kind of program for preschool! I know FM is controversial but you could experiment and see what works best for him.
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I have never had him evaluated anywhere but through the county programs and his audiologist/ent people and pediatrician, but if there is even a possibility I will definitely talk to his doctor to see about tests and evals from other places. He was supposed to have genetic counseling and all that stuff last december but the people we had him appointments with ended up losing their funding so we are on a waiting list with the place we take him for his audiologists and stuff (8 months ahhh). O/t but I just googled symptoms (and causes) of mild cerebral palsy because I am not to familiar with it, and I think we may need to look in to it pretty closely not only for him but for my youngest daughter as well. My youngest, when she was a baby had ear infection after ear infection and she actually failed all of her hearing screenings as well, but they put tubes in her ears after her first birthday and never had any problems afterward. But some of the main concerns for cerebral palsy are the things her doctors keep telling me she will grow out of but have been saying it for two years now. It never concerns them when they aren't the ones who have to watch their children in what seems like excruiating pain when it could be something treatable or something simple exercises could help out with. I am going to try out some of their recommendations just to see.

His morning class is general special needs program. Sorry rambling again.
 
Oh, it's familial? Does his sister have a spoken language delay as well? Is there anything else of note with their medical histories? I'm not a doc or a professional.....BUT, there is a chromosome disorder called 18p- syndrome, that can mimic mild delays. (the kids with it look like they have obvious learning disabilties or hypotonia, as well as severe spoken language delays) Doctors used to think (and still think) that kids with the rarer (meaning non Down's Syndrome) autosome(numbered chromosome) disorders are the type of kids who are at best severely mentally handicapped and have about ten billion medical problems. There are kids like that with the rarer syndromes, but they're discovering that kids with the rarer chromosome disorders can be more mildly affected.
I suggested looking into organizations like United Cerebal Palsy b/c they often deal with low incidence phyiscal disabilties, that while they're not exactly CP, they mimic CP.
 
I wish that doctors had treated my mother the way that is suggested in this video when I was a child. It may have prevented her from choosing to force me to be oral only.
 
I kind of thought that my little girl may have had some kind of trauma, when we were in labor for about 8 hours the nurse told me to turn over I laid on my side and all of the sudden all kinds of gadgets and crap went off, her heart monitor flat lined there was nothing there her oxygen went down rapidly apparently she laid on her chord. There was no movement/heartbeat/oxygen for a minute and 7 seconds (husband watch the clock :-( they started prepping me for csection flipped me over trying to move her off the chord all kinds of madness. when the doctor got in there (tmi for some I appologize) he started to push and move and moved her off the chord and everything went back to a green light and she started a heartbeat again and all went back to normal. I kept asking over and over "is she ok will she be ok" they just kept telling me "oh no honey this happens all the time just a little hiccup". Here she is at the age of two going on three and she doesn't say a single word, she seemed to hit all of the other milestones around when the "experts" say they are supposed to. What concerns me about her is she never bends her knees when she walks. She walks straight legged and on her tip toes. She doesn't do the tip toes all the time, but it's often. I realize the speech may just be she is going to start later which is fine, she signs perfectly so we already communicate, but if there is even a remote possibility that there is something that needs to be looked in to I would like to know.

*None of which makes any difference I am sure it would take more than 1 minute to do anything but that was a little back story as to why I thought she might.


And now the new baby not passing any of his hearing screenings, we go the 6th for the sedated abr, it is obviously genetics right? He was 5 almost 6 weeks early though so they all like to play it off as him being a preemie. Another interesting birth story I won't go in to :-P
 
deafdyke said:
Oh, it's familial? Does his sister have a spoken language delay as well? Is there anything else of note with their medical histories? I'm not a doc or a professional.....BUT, there is a chromosome disorder called 18p- syndrome, that can mimic mild delays. (the kids with it look like they have obvious learning disabilties or hypotonia, as well as severe spoken language delays) Doctors used to think (and still think) that kids with the rarer (meaning non Down's Syndrome) autosome(numbered chromosome) disorders are the type of kids who are at best severely mentally handicapped and have about ten billion medical problems. There are kids like that with the rarer syndromes, but they're discovering that kids with the rarer chromosome disorders can be more mildly affected.
I suggested looking into organizations like United Cerebal Palsy b/c they often deal with low incidence phyiscal disabilties, that while they're not exactly CP, they mimic CP.
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Can I just tell you again thank you for all your advice or help. You have been awesome. I really do appreciate you taking the time to chat with me about all of this :)
 
Blondon- it sounds like your daughter will benefit tremendously from the signing as well. Could she have mild CP?
 
After talking with deafdyke for a while I am kind of thinking that genetic counselor is looking better and better. To bad we are still on the list. But I just googled (google tells me everything :) but they have a clinic a little closer than the one we are on the waiting list for so I am going to call my pediatrician to see if we can go to it instead I am sure this is something that will require a referral from them though.
 
blondon704 said:
After talking with deafdyke for a while I am kind of thinking that genetic counselor is looking better and better. To bad we are still on the list. But I just googled (google tells me everything :) but they have a clinic a little closer than the one we are on the waiting list for so I am going to call my pediatrician to see if we can go to it instead I am sure this is something that will require a referral from them though.
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Yes, please do. I am almost positive that the reason a lot of kids with 18p- were found to have it, was b/c of profound speech failure. It is a big red flag in my syndrome, (18q-) too. (I am the only one to only have had typical hoh issues) You do know that she could ALSO take advantage of having ASL as a first language and deaf ed too? (She would basicly get deaf ed the way a voice off unaided kid would) It's kind of unusual, but not unheard of for kids with spoken language issues to use ASL/Sign as a first language.
 
deafdyke said:
Yes, please do. I am almost positive that the reason a lot of kids with 18p- were found to have it, was b/c of profound speech failure. It is a big red flag in my syndrome, (18q-) too. (I am the only one to only have had typical hoh issues) You do know that she could ALSO take advantage of having ASL as a first language and deaf ed too? (She would basicly get deaf ed the way a voice off unaided kid would) It's kind of unusual, but not unheard of for kids with spoken language issues to use ASL/Sign as a first language.
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The last time I went and picked Calyx up from school I had her with me and the teacher asked me if I had ever had her evaluated through birth to three because she thought that she did have a delay, it is kind of noticable when it is a teacher telling me I guess. We still have 6 months until she turns 3 so we have an advantage with that. I honestly, in my over motherly ways, thought that she was just behind. Although I kind of always figured there was something since my oldest by now was very vocal and started chattering at a very young age (16 months).
 
:bump:

YOU GUYS. Before you make a report against me, I'm not going to spam a bunch of old threads. Chill out.

Anyway, I bump this thread so AD'ers can see how parents have to deal with doctor's message...
 
Lay...pls watch this video. Maybe it will enable you to step out of your own perspectives and see the bigger picture. If not, then nothing more can be done.
 
I overlooked this thread due to tired of BS rants about hearing loss. That woman in the video said it well! I love her already! She said exact how I am thinking lately. KUDO to her!
 
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