To be worried about this child?

[EverybodyBlessHisSpouse]

I'm going to try and keep this brief, but give as much info as possible. This is strictly an AIBU to be concerned about this, or is it nothing to worry about?

A close relative of ours is starting school this week. He is profoundly deaf and has 2 cochlear implants. His mum signs to him, but only occasional signs if she is not standing right next to him or if's it's very busy/noisy, otherwise she speaks to him - the little boy doesn't seem to have too many problems understanding (in terms of following instructions/simple questions) if you speak to him directly. However, despite having had some speech therapy his speech is very poor. He is very 'vocal' but most of it is unintelligible sounds with the occasional name thrown in so I know who he is talking too/about. But rarely understand what he is 'saying'. No one else in the immediate family (his dad/sister/grandparents) sign to him. He has no other SN that might explain his lack of speech.

DH and I can sign, but this is actively discouraged by his parents because it "isn't necessary" now he has the implants. He has just been granted a statement which means he will have an allocated support worker in school but, when they queried something and the school reassured them that the support worker could sign and would work with him, they told her that they did not want their DS to be signed to. "What's the point of him having implants if he's going to sign?"

My concern is that he currently finds communicating difficult - and he's often isolated from the other children (e.g. mine) when with them because he can't join in the game - he wants to and starts off watching them closely and copying but then loses interest and goes off on his own because he isn't really playing 'with' them. IYSWIM. He doesn't have the speech to communicate, but doesn't have the signing skills either (and these aren't going to improve if no one signs to him). I am concerned about his ability to communicate/identify with his hearing and deaf peers if he lacks the skills to communicate with either group. So am I being U in being concerned about this, or is it typical, that once a child has CI, signing stops?

I just think that if it was down to me, I'd want to maximise his ability to communicate, not restrict it. If it isn't going to do this, then fair enough. Thanks.

There's a little boy like this on my street and I can't for the life of me understand what he says but all the kids on the street understand him and translate for me :)

The thing is, hardly anyone knows sign so if he relies on sign as a way of communicating then he will not be maximising his ability to communicate iyswim?

I think then that yabu :) unless you know that his parents don't want what's best for him then they must be doing what they think is best.

I don't think YABU to be concerned - I would be the same, why limit communication? But it is not really your place to do or say anything about it. If they have told the school they don't want him to be signing and school haven't raised any issue with this then what can you do?

I do see what you mean, MrsRhett, I hadn't thought of it like that!

He is starting at a mainstream school so will be surrounded by hearing children all day, but will, presumably, have contact with/support from members of the Deaf community at some point. I just personally felt that he is missing out by not being encouraged/taught to sign.

Nephew has cochlear implants and speech takes a while to come. They are not just learning words, but how to process sound at all. A hearing child's brain has had to process sounds since they were in the womb, a profoundly deaf child's brain has never had to deal with sound at all so I think it takes longer than you might think to learn language as that it just a tiny part of what they need to learn.

Children adapt very well to new environments and if your nephew is suddenly in a non-signing environment with lots of children wanting to communiate with him, I think he will adapt.

My nephew is supported a lot by the Deaf Association who periodically go into school and make sure that everyone understands what his needs are. They have been great. Assume that this will be available for your nephew too. I think he will be fine and everyone will be monitoring him to ensure that his needs are being met.

FFS. The description of those parents really pisses me off. No, I don't think you're being unreasonable. They sound like they're playing god with his life.

Personally, if I could sign, I'd sign to him. If you can speak a common language, speak it. There's no reason why you can't speak out loud as well with him - but let him speak back with sign.

Well whackamole I know it's nothing to do with me and I'd certainly never interfere, it's just my personal feelings on it.

But it has been playing on my mind. I'm an early years teacher myself, but have never had a Deaf child in my class or any experience of young deaf children outside of him. So i have no personal experience to draw on.

iirc (although don't quote me on it) one of the things with having implants is that the child essentially has to learn to hear and interpret the sounds around him.

What you have to remember is that when the child is born profoundly deaf, his brain doesn't develop those hearing skills at the early age like any other hearing baby, so when he has the implant the brain essentially has to learn to hear and learn to interpret the sounds it hears and turn them into words/sounds etc. And it is several years behind so this is a more gradual process, iyswim?

If the child is signed to, then he is not going to learn to recognise the words that are spoken to him, and the longer this goes on, the less effective the implants will be.

So - yanbu to be thinking that this seems to holding him back, because you're not to know otherwise, iyswim, but in truth his parents are giving him the best start in the hearing world by trying to get him to learn to understand and interpret speech rather than by relying on sign.

Presumably his parents have been dealing with all the right HCPs and the expert advice they receive is that talking to him is the best way to go to get him talking?

Signing isn't going to help him be more included with hearing children. If your children are "close relatives" I do think they should be trying harder to include him though. (sorry) A friend of mine has a son with very delayed speech. I really struggle to understand him. My DC (and others) have no trouble at all and they play really well togther, despite the fact that they only see him about 4 times a year.

DD has a friend who got cochlear implants about 18 months ago. TBH I struggle to understand her a lot of the time but none of the dcs seem to have any trouble and she seems a very popular and happy girl. She doesn't sign at all as she has visual impairment too.

sixpinetrees there is a sign language that has been adapted for children who have hearing as well as visual impairments.

Goosey and wannaBe - thanks for your replies. They have put my mind at rest somewhat. I know that in the early days they were very much in denial about his deafness, but your posts made a lot of sense. Thank you!

G1nger - I'd like to sign and speak to him, but his parents have explicitly said they don't want me to sign, I'm not going to go against their wishes, I'd be furious if someone ignored my instructions as a parent because they didn't agree with me!

They have said themselves, though, that teenagers often reject their implants because they can feel that they are neither part of the hearing nor deaf communities and can feel resentful if they've never learned to sign.

I think it is difficult tbh.

In truth I think that a lot of disabled teenagers do feel rejected anyway because teenage years are a time when it's betterto be seen to be cool, etc. I certainly noticed as a teen that lots of my sighted peers seemed to view me differently than when we'd been younger and they were still happy to be seen out with me etc, and then as we grew older that apprehension seemed to disappear again.

The deaf community is unfortunately known to be very insular, and I can sort of see why a parent would want their child to grow up more integrated into the hearing community tbh.

My DD has expressive speach and language problems, as well as moderate LD's, delayed development, she used Makaton, until she was around 9, they moved her out of the S&L unit, so that she would be around verbal children. Signing was discouraged and still is, as children need to practice speech and hear it. They may have been told this.

The hardest part of having a disabled child can be family members who think they know better.

We were told to stop using sign and i was given a whole programme of S&L to practice, which was followed through in school (SEN).

There isn't a magic wand with S&L, or even easy answers, things can change as a child gets older, the best thing is to keep a childs confidence going.

Communication is so important and cuts peaple off from living a 'normal' life, S&L is very underfunded. It is heartbreaking. Cut them some slack, if they stop signing now and the child needs it, school will advise them.

create - yes they do get help from all the right HCPs, a lot of it, they've been really well supported! which is brilliant.

WRT to the children playing together, they do try to include him, but they are quite young. My DS is older and so plays really well with him, so that's not really an issue. He isn't excluded, IYSWIM, but just seems to be on the periphery at times because he can't contribute his ideas.

I don't think he had too many problems at pre-school, but they also said he was often on his own.

This situation is exactly why Wilf has learnt Total Communication. This way he can speak and use sign language. I feel very sad for this little boy if his parents are trying to stop him communicating!!!

It is commom to be in denial about your childs 'problems', this will pass.

There will be meetings with the school, they may go through a period of sadness as it sinks in. You ignore it, in a way to start with, you just go with what the doctors etc suggest.

Just don't think there are easy answers and if only the parents were doing something different, things would get better, this is a common belief towards children with hidden disabilities.

Birdsgottafly - Tbh, I don't think I know better! I have been thinking about it, and I care about him. I know that they obviously do too!! I'm not criticising them I was just wondering.

Your (and the other) explanation for discouraging signing makes sense, that must be why.

Our worry was that it was something they had stipulated because the school did talk about signing. I don't need to cut them some slack. I've not said anything to them at all and wouldn't dream of it. Your comment about communication being so important is why it was worrying me.

But thanks. perhaps they will be given something in school that we can all use at home. I just feel awful when I can have conversations with the other children but can't with him because I don't understand him and don't want him to feel that he's trying to communicate with this big person who clearly doesn't have a clue! He clearly has a lot to say!

They were lucky in that his hearing loss was picked up in the neonatal hearing test, so they knew before he'd been discharged from hospital at birth. This means that they've had a huge amount of input from his birth so they are in a pretty good position now.

His parents have done everything they could have done for him so far and I'm sure they will do in the future.

The school don't know him and may not have upto date advice from the hospital, the parents have spoke to consultants face to face. The implants have been done with a view to him learning to speak and to start to hear. This takes practice if not done from birth.

He won't get better over night, it s a slow process and the plans may change, to see what suits. His hearing may drop over winter so they go back to signing, this may change again. You have to be careful not to overdo things. They will give them games to play and teach them how to incorporate S&L into all activities.

Just to add my DD went to drama, she can mimic whatever she needs to, so there are ways to communicate that don't just involve speach. I had worked with stroke patients, so i was used to non verbal communication.

The plan is to improve him but it isn't the b all and end all.

EverybodyBlessHisSpouse, one of my dcs has had communication issues (not at all related to hearing).

The one thing I have learnt is that in the right school environment, the teacher will do their best to ensure that the child isn't left on the sides but included in games etc... They will also ensure that the child is included at ll time during lessons etc.. and given opportunities to talk, even if people can't quite understand (I know my dc teacher has been 'translating for some time when he was speaking as this was not understandable for the other children in the class).

Aside from what others have said re using sign language etc..., if the school is proactive your nefew should NOt be in a situation where he is on left on his own most of the time because poeple can't understand him.

Hmmm, I come from a family of deaf people, my mum is profoundly deaf and most of her family are/were too and I think that his parents are just trying their level best to prepare him for life. Unfortunately, not many people can sign, so I would think that their reluctance to limit his language to just sign is preparing him for an independent life in the future.

I see what you mean about maximising his ability to communicate but I am assuming he will still have the ability to sign, even if he doesn't use it every day.

Thanks for the replies. It has reassured me.

Yes, of course they have spoken with the consultants and will be acting on their advice.

It was hard to know how to word this, I'm aware that it might have looked a bit like "AIBU to be worried about this child [because I think the parents are shit and have got it all wrong and I know best]?"

When in reality it was more of a "I can't help worrying about this child, am I just worrying because it's a child with a disability and everyone who loves him is going to be worried about him and inclusion and his future, etc,?"

His parents seem content (overall!) with the level of support they've received and the fact they've managed to get his statement in place before he started school. They've spoken to other people in their situation who haven't really started the process yet. Like lots of other people, though, they've had to really fight/press for it.

EverybodyBlessHisSpouse

Maybe you could consider this from a different perspective. If, as a teacher, you had a foreign child who was a non english speaker in your class would you insist on always having an interpreter with them to speak to them in their own language. Or would you allow them to lean the language of their peers and teachers in a natural way by listening to them?

The parents will have had expert advice. They are now following it.

It is not easy having a child with a hearing impairment. It is not easy being a child with a hearing impairment. It is not easy putting your child through all that having an implant entails, but having taken that step it is important to maximise the childs chances of acquiring spoken language.

The parents are doing what is in the long term best interests of the child.