DD is deaf and I'm lost

[LittleSausageFingers]

I've posted about DD, now 1, before. She has hearing loss, at first it was thought the loss was due to glue ear, but the glue ear has cleared up and the hearing loss is still there. We're having audiology tests to determine the extent of it, but looks like moderate sensorineural loss. She doesn't respond to our voices, but she's so smart and communicative non-verbally. She has a hearing aid on a soft band, although the audiologist isn't sure it's at the right level, and I haven't really noticed a difference when she's wearing it. I find it hard to keep on her also.

I just feel so lost. I feel really sad when her baby friends are saying mama, dada, etc, and she's not babbling at all. I'm going back to work on Monday PT and she's going to nursery two days a week. She hasn't really settled there and I feel like she's quite isolated with her deafness, and overlooked because she doesn't respond to voices.

We don't need the money from my job, but if I don't go back to work now it'll be really hard to get back to work in the future IYSWIM. I just want to help her and I feel guilty going back to work when maybe I could be looking after her and trying to get her caught up... but I don't even know what to do to help! I suppose I won't until they've done more tests. It's just such a slow and frustrating process!

I'm probably having a bit of a delayed reaction to the news that the deafness is permanent. But any advice? Should I be pushing harder with the audiologist, or going private?

Thanks

[LittleSausageFingers]

Thanks for your post. We can go private, DH has private medical through work, and we saw an ENT privately to schedule grommets for the glue ear. The ENT put her on his NHS list, as she's too little to have GA at his private hospital. They were going to do ABR at the same time, but now there's no glue ear, so they want to do the ABR with sleep induced by giving her melatonin (they already tried with natural sleep, but she wouldn't sleep!)

I'm in Manchester, if you know of any units with preschools around here?

Thanks very much

[Meloncoley2]

It sounds as if it's even more stressful for you because of your impending return to work, and not being confident about the childcare.
It's often a very worrying time, even without your other concerns. Do you have other options?

[LittleSausageFingers]

Thanks F1ip we have been assigned a ToD, she was lovely, but when we saw her we thought it was just the glue ear that we were dealing with, so she gave us some tips for using the hearing aid, but as DD was on the list for grommets we didn't get into much else. I'm going to get in touch with her now things have changed.

I'm working three days melon and my mum will have DD one day, which is great as I know she'll persevere with the hearing aid and she's so great with her, with infinite patience! I'm probably letting my control freak nature get the better of me with the nursery worries, but the one time I sent DD in with her hearing aid (for a two hour settle session) they didn't take it off when she went to sleep, and I could hear it shrieking with feedback from across the room when I went to pick her up! I just feel like they've no idea really, and the information i give to one carer doesn't filter down to the rest of them.

[Joni234]

Hello
My DD is 11 months and severe-profoundly deaf, sensorineural. We found out on newborn screening test and she got hearing aids at 8 weeks. So, a few things:

Be kind to yourself . Finding out about permanent hearing loss is a huge shock but it gets easier. So try not to panic at this stage.
As others have said, your Teacher of the Deaf is crucial. Get in touch asap, explain the latest developments and outline all of your concerns and questions.
You say your DD has hearing aid on a band, is this a bone conducting aid? If the glue ear has cleared up would conventional in-ear hearing aids be a better option now. If audiologist doesn't know whether it is programmed properly, why not? Do you need new abr? Or more behavioural hearing tests? Your Tod can help explain these things and push for clarification from audiologist.

My lo has definitely benefitted from hearing aids and is now babbling. Although she now has glue ear overlay so we are looking into grommets and poss implant for her bad ear.
With nursery, tod, audiologists etc - don't be afraid to push them. It sounds like nursery is a problem and all of the staff will need proper training. Speak to the senco and ask for support from your tod about what they should be doing
Pre-school years are in important window for deaf children to develop language and listening skills. Look into AVT- we are not in a position to have this but I have found loads of AVT session videos and YouTube which I have found really useful.

And just to reassure you in the long term - I have other family members, severely and profoundly deaf, who are now in their thirties and have gone though normal schooling, university , work, marriage and parenthood. They have had extra challenges but live happy, normal lives without much extra support needed, aside from their hearing aids. Your DD will thrive and it sounds like you are geared up to help her however you can.

[LittleSausageFingers]

Thanks Joni and F1ip for your messages. I've emailed our ToD and I'll give her a ring later this week when I'm not at work to arrange for her to go in to the nursery. Hopefully I will get to talk to the nursery when I pick her up tomorrow night and I can flag this all up (again).

Joni, yes we have a band at the moment. The audiologists did say that in-ear hearing aids would be better, and I'll ask them when we can expect to get them when we go later this week. We do need an ABR, we haven't had one yet, they couldn't get he to go to sleep naturally to do it and they are reluctant to sedate her. We're trying again next month to do one with natural sleep but I'm sure she won't sleep . It's just all taking so long. We can go private, as DH has insurance through work, so I might see if we can speed things up that was (although possibly not, as most private hospital won't put very little ones under GA).

Thanks for the tip on AVT. I will look into it and on YouTube. And thanks for your lovely words

We never expected to be in this position so I feel totally out of my depth and not sure if I'm going about things the right way at all!

[Note3]

I won't pretend to understand your situation completely as my daughters do not experience hearing problems but from your post I observed the following:

1. The guilt you're experiencing at going back to work is totally normal for a mum of a child with or without SNs. If it's the right decision for you/your family long term then try it out and if after say 2 months things are still a struggle and not gelling well then perhaps reconsider. My work require ppl to return for 3 mths else they have to repay the additional maternity pay and I think they do that as many mums wouldn't return otherwise but after the first month or two they get over the guilt and anxiety and get used to the new routine and find themselves able to remain.
   

1. If your daughter hasn't settled well at the nursery is it because she's only had very few sessions there? If so then give it more time, if however she's had say 5 or 6 sessions and is still not settled better then I would strongly suggest it's not the right nursery for her. Where my three have gone, the workers have been fantastic and have gone over and above to engage the babies and make a fuss of them and bond. I am certain that had my children had hearing problems they would still have bonded well with the workers as I have trust in them that they would have done what was needed. If your daughter has had a good no of sessions and not bonded very well and be showing she is generally happy there then you may wish to consider a different nursery?

[LittleSausageFingers]

Thanks for your message Note, yes I think you're right, I would feel guilty even without DDs hearing loss! Today was my first day back, and DD was with my mum and had a lovely day, kept her hearing aid on all day and seemed really happy. So far she's had six short settling in sessions at nursery, and they do say she's settling in well, but I'm not so sure. When I've been to pick her up she's generally been on her own and not really engaging in anything (and she's such a communicative little thing when you're one-on-one with her). But it may have just been bad timing. I'll see how the next few weeks go...

[Note3]

Glad she had a good day...makes your first day back that much easier

Keep an eye on nursery and how your LO seems and how you feel then don't be afraid to change placements if you don't feel it's right. Hopefully she'll settle better soon. I imagine it'll take her a little longer as she needs to build bonds in a more specific way as a result of needing direct interaction as opposed to experiencing the general sounds and hustle and bustle (hope you know what I mean as it's hard to explain). Seems like this is where the TOD ppl referred to up thread can come in handy?

[Olympiathequeen]

Would she be better with a childminder who can give her more one to one attention? Or maybe family member? She needs someone who can do makaton or baby signing until they can assess her for a better hearing aid or cochlear implants.

[LittleSausageFingers]

You're probably right Olympia, she needs more one-on-one time. At the moment she's only in nursery two days (I work three days and my mum has her one day). What we really need is a better idea of her hearing levels and better hearing aids, or plan of action. Have an audiologist appt on Thursday so I will push them then. Seems like it's been dragging on for ages (probably hasn't, it's been about three months since she was first seen by audiology).

She's like a sponge at the moment, soaking everything up and copying everyone we do. I don't want her to miss out too much at this critical time.

[LittleSausageFingers]

Thanks note. Yes have contacted our ToD and will chase later in the week when I'm not in work. Keeping a close eye on nursery!

[LittleSausageFingers]

Just wanted to bump and update. Glue ear is back, bone conductor VRA on Thursday showed raised hearing again. Desperately need ABR, but audiologist mentioned auditory neuropathy. Still stuck in limbo not knowing... feeling a bit sad, it's been an emotional rollercoaster of a few days, but trying to be proactive. Looking into signing courses and deaf baby groups. Have spoken to ToD and NDCS, and have raised my issues with nursery with a view to changing childcare if no improvement. Thanks for the advice so far

[hatchypomagain]

Ok I have 2 deaf children, both with auditory neuropathy. You and your DD will be fine. Technology and support is out there and amazing, but you'll need to take control. The average age of a TOD is 55 and many of them just haven't kept their training up to do. Here's your homework and hope. www,alicesears.com, www,avuk.org and www.facebook.com/groups/ANSDParents/
All are amazing resources and full of hope, when you're feeling all is lost. For what it's worth, my DD wasn't diagnosed until she was 18 months old and has only ever been to mainstream school, she has above average reading age and is in the top sets for everything (oh and she's spirited and gorgeous too). You'll be fine, she'll be fine, but take all the advice out there.

[hatchypomagain]

ugh - stupid link.... //www.alicesears.com

[hatchypomagain]

//www.avuk.org the leading charity teaching deaf babies and children. they see hundreds of children every year and were my lifeline when i needed them the most.

[LittleSausageFingers]

Thank you hatchy that's so helpful. I will keep updating on how we get on. It's so good to hear that your DD is doing so well x

[LittleSausageFingers]

Hello, just wanted to update. DD had her ABR on Thursday, she didn't stay asleep long enough, so we have to go for a repeat in a few weeks, but they got enough data to diagnose her with ANSD with 99% certainty. I am relieved to have a diagnosis, and feel positive about the future after talking to other families in the same boat, and taking DD to a deaf group yesterday, which we both really enjoyed. I know we have a long road ahead of us.

I think DH is a bit knocked. I think he was half expecting them to say it's all a mistake and she can hear fine (he's been in denial for a long time!)

Going to wait for the dust to settle a little bit then make some decisions about how to proceed as a family. I am thinking about taking a career break (not only because of DD's deafness, other reasons, but it's obviously a consideration), but should probably wait before making any big decisions. Thanks all for your messages and suggestions, really appreciate it.

[hatchypomagain]

Ok massively outing but hey. Please join our Facebook group for parents of children with ansd. I've been in your shoes (actually I have two with ansd). We wrote about it on www.alicesears.com but she's now older and tells me what she thinks about everything. Please also look into an ndcs newly diagnosed weekend they are very good. My final piece of advice is take a look at www.avuk.org it changed our kids lives.

[hatchypomagain]

You can do this, it's devastating but manageable. It's never too late to take control. Kai uus at Manchester uni is the worlds leading researcher on ansd. The cochlear implant centre is also a specialist on it. You're geography is in your favour. Good luck and feel free to shout out on Facebook. There are 2 competing groups one is very us focused and dictatorial the other is much nicer :)

[hatchypomagain]

Ugh repeated myself horribly sorry xxx