We were living in Minneapolis when our twin sons were diagnosed at age 2 with moderately severe hearing loss. We were soon involved with early intervention teachers, then later on educational audiologist, speech therapist, TOD through the school district YET somehow I managed to not be aware that I should take the children in to an ENT for all sorts of tests to determine causation and if there are symptoms of a syndrome. This is perhaps because we changed audiologists at the beginning. It seemed like we had so many professionals around us, but I realized later, when I finally got on-line to research IEPs and discovered Listen-Up.com that there was so much more to know about the boys' hearing loss and education.
My fault for not being sufficiently diligent, but was too exhausted to think straight and none of the professionals ever set it out for me. There was no package of written materials about hearing loss (I think there is now), but we were told about the support group now called Hands and Voices. I met with them early on, but most kids seemed so much worse off than mine. I did go to some educational seminars about IDEA, etc. They are lovely and helpful and I think now I have enough energy to partake of what they have to offer, but it was so overwhelming then. An acquaintance did hook me up with a mother of a HOH girl in the neighborhood and she was supportive.
Now we live in Hong Kong, and there seems to be very little here for English speaking HOH kids. It is hard to find an SLP with hearing loss experience and I haven't been able to track down anything like a TOD. The boys' school is supportive but does not offer such specialized services. We have to pay for them privately and they cost USD100-220 per session! I have met four other moms of HOH kids, just by coincidence (one through Listen-Up.com and one at church) and we have met a few times to exchange information.
In India, if you don't help yourself, no one will help you. Most of the people who are in this field are only interested in the benefits they can make. Had it not been for my speech therapist my life was doomed for sure. We cannot trust anybody.It is a very sorry state and we need someone to help the deaf without an ulterior motive.
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