Please help me parent kids with hearing loss.

[LargeLatte]

Sorry - this is a huge post but I really am at the end of my tether - took to my bed yesterday afternoon and just sobbed. No one in RL to talk to about this.

I know I am on here a lot asking for help. We are only just starting to unravel the problems that ds1 and ds2 have, and the help I am getting here has been a real life saver, so I hope you don't mind me coming back and asking for more advice.

Bit of background first......

ds1 and ds2 both have hearing loss. ds1's is caused by glue ear and ENT described him as 'deaf as a post today'. He has been getting progressively worse for a while and now although only has 50db loss (so can't hear anything at normal conversational level or below), his tympanic pressures were flat, so the quality of sound is poor.

ds2 has some permanent hearing loss due to damage to his ear drums, and some additional temporary that makes it worse occassionally.

I have two problems that are really affecting us, and making me feel really down:

1. I am never sure if they have heard me so I have got into the bad habit of repeating myself over and over again to get them to respond.

2. They are hopeless at staying on track. For example at breakfast time they will get up from the table several times so I am constantly reminding them what they are supposed to be doing. I know in this situation I am supposed to use a natural consequence - like if you get up from the table breakfast is over, or if you don't finish getting dressed then that's how you will go to school - but I just dont have the heart to do that to them and tbh I'm not sure they would understand.

ds2 also has dyspraxia and low muscle tone so needs a lot of extra help than an average 5yo.

ds1 has vision problems which we are doing exercises for, so is used to having a lot of help for him to stay on task when doing school work.

I really need help with this pronto. It is ruining our relationships because after the 8th time of asking them to eat their dinner / brush teeth /get in car etc etc I am sounding hostile.

And my throat is permanently painful and my voice is ruined - rasping and croaky all the time, so many people keep asking me if I am ill. It used to recover by morning but now it sounds bad all the time.

And I know this isn't a temporary problem- ds2 will always have this hearing loss so we need to get our heads around how to communicate with him.

I am so miserable right now.

Okay. First off some
(possibly not very helpful bits first)
Are your boys aided? If not you need to be questioning ent/audiology why not.
Ndcs have been a great help to me. Have you contacted them/do you have a family officer?
(slightly more practical advice now)

Don't repeat more than once.

Allow processing time - deaf children don't process information/sound/speech as quickly as hearing children. For example I can tell dd to put something in the bin and if I wait longer than I feel is "normal" she will then put it in the bin. It's about 30-90seconds after the request (long enough for you to think she's ignoring you). She never does anything straight away.

Deaf children are very visual - Use sign/gesture/pointing/miming everytime you want them to do something.

Again on the visual if you're not already use picture support. A visual time table, or similar.

Try to keep sentences as short and to the point as possible. "shoes on" rather than "go and put your shoes on now please ds1"
If possible rearrange your grammar - especially when telling them not to do something. For example of you say "no don't hit your brother that's not nice" they may only hear "hit-brother-nice" so rephrasing to something like "no hit brother no" which insures that they should catch at least one of the "no"s. iyswim.

Anyways hth.

the general rule is to make sure you have them looking at you before you start talking, so call ds1/2 by name or tap on shoulder, when you have them looking at your face then say what you have to say and keep it simple as possible, one step at a time rather than a long list of instruction if you can. Ask them to repeat back if you can so you know they have understood. Sometimes easier said than done with small children You could also think about visual reminders if you think that would help.

if your ds2 has permanent hearing loss is he aided, do you get support from a teacher of the deaf? Are they doing something about the glue ear ds1 has or offering hearing aids? Have a look at the ndcs if you haven't already, they have some great info on their site.

Thanks very much you two, they are helpful tips. Especially about the processing time.

I had never heard of ndcs until you posted a link.

ds1 is now listed for grommets so its only a matter of coping until we get them.

ds2 is carefully monitored and we were offered hearing aids last time we went. I have given it a lot of thought and have a brother with a similar level of hearing loss to talk things over with and for now I have decided to not to have hearing aids for him. I don't know if I will stick with that decision tbh. He is very happy at school and they are doing very well with him, and because he has other problems it is so hard to tell what is hearing related and what isn't.

I have no support at the moment. I've been trying to find special needs groups or just anyone I can talk to but drawing a blank. I will look at the ndcs link tonight.

I was thinking of going for minimal talking tomorrow. I really need to rest my voice or I will ruin it, its so painful, so it will be a good opportunity to see how they repsond.

it's worth having a look on your council website for you local sensory impairment service (may be called something similar), usually under education somewhere and referring yourself, it sounds like a teacher of the deaf could be useful to you.

I've looked on council website but can't find any groups to support with any of the problems. You can register as deaf but that is to help their statistics.

There is currently no SENCO at the school as she quit and new one doesn't start until September. I have looked everywhere I can think of for support services but can't find anything.

I have totally had my fill of RL people telling me how normal the ds's look, or giving me crap advice to imply that my ds2s problems are caused by me being a crap mother.

And to top it all after telling dh how close I am to not being able to cope anymore he (who has been out for his weekly football game) has just said he is already helping by getting the boys breakfast in the morning and doing the washing up in the evening, and doesn't see what else he can do, so now I've got so frustrated I've gouged a nice whole out the side of my arm which I will have to try and cover up for the rest of the week.

Perhaps you could contact "hearing And vision support services", Should find them on county council website. They're the ones who supply a advisory teacher (aka teacher of the deaf or TOD) they would also know about local support groups.

Sorry Largelatte, but IMO your boys need to be aided. Your DS with the glue ear can access his hearing by using a bone conduction hearing aid. A Hearing loss of 50dB is not good. Your DS with damaged hearing - I would go back to your Audiologist and say yes please to the aids and get them for the other DS too.

With practice you will learn to moderate your use of language to help them understand you more. Deaf children take longer to process, plus they forget sequencing of instruction easily. So yes, you must check that they've understood you.

I have two deaf children.