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My grandson was born profoundly deaf

(25 Posts)
gotthetshirt Fri 06-May-11 20:19:55

My grandson is 10 months old and was born deaf. He has been given hearing aids which help a tiny bit. Does anyone else have any experience of this? I worry about things such as whether he will ever be abe to write if he can't hear what's being said.

QuackQuackBoing Fri 06-May-11 23:25:45

Hi, I'm not a grandmother but saw your message so joined up to be able to answer you.

My children go to a school which also teachers deaf or partially deaf children (I think it is the norm to mix them now). I just wanted to say that all the children communicate together beautifully. All the hearing children learn sign language as well and all the children are totally accepting of each other. They did a school concert recently and all the children were signing the songs as well. They are only 4 so the hearing children have picked it up very quickly which I thought must be good for the deaf children as having so many other children to communicate with would make them less isolated.

I recently asked on Mumsnet about the reading/writing thing and a woman who has a deaf child (8) said that he can speak (says a few sounds differently but not that noticably) and can read and write now. So I think it takes them a little bit longer but they do get there.

Just wanted to share what I know although am by no means an expert!

glts Sat 07-May-11 00:29:53

Hi Gotthetshirt, i am new to this so hope Ive got this right.
My daughter was born deaf 34yrs ago and like you i was in bits, i need not have worried she learnt how to lipread and to cut a very long story she went to uni and got a Biomedical science degree. She is married with two handsome sons, with perfect hearing.

GeraldineS Sat 07-May-11 22:13:11

For the last three years of his teaching career, my husband worked at a school for hearing impared students. Some of the children he taught were profoundly deaf. The school is auditory oral, and they are taught to use the residual hearing they have. There was no signing. The school is on the same site as a 'normal' secondary school, with which there is a lot of integration. Out of all his years in teaching, my husband enjoyed his 3 at this school the most.

gotthetshirt Sun 08-May-11 09:05:02

Thank you all so much. Feeling better about it now. He is such a lovely little chap. We were all so shocked when he was born to find this out. Never really had any experience of this.

Joan Sun 08-May-11 10:06:46

If your grandchild is going to learn to sign, you might want to learn it yourself - it would be a huge boost to you both. Also, I do believe that medical advances will help more and more in the future.

My sister went blind at age 8 and my Mum learned braille. A lady used to come and teach her. My sister went to schools for the blind until after her O levels, then she went to the grammar school that my brother and I had been to (Heckmondwike) for her A levels, then on to Manchester University where she got an honours degree in French. She works as an online translator.

Just remembered the high-tech way they tested both my new babies for hearing problems. The doctor rattled her car keys behind the baby's bead to see if he turned round!!!

deeps Thu 12-May-11 11:18:11

Hello gottheshirt. Sorry to hear about you grandson but happy to tell you that all is not lost. My son was deafened by chicken pox when he was 18 months old but was not given hearing aids until he was 5 years old due to a delayed diagnosis. At present he is working with a geology team offshore in the North Sea (he's now 21) and is looking forward to moving into either drilling or diving. He wears two hearing aids and, whilst he was not the top of his class academically, he is a fine figure of a lad and is loved by everyone. There is great hope nowadays for the deaf or hard of hearing and many more opportunities than in the past. Before moving on into the care home sector, prior to my retirement, I worked for many years,as a volunteer, for the National Deaf Children's Society and I most strongly advise that you, or your grandson's parents, contact them at the earliest opportunity. They are a mine of essential information and support. My wife and I would have found life much more difficult without their support and it was a priveledge for me to work with them. You can find them on www.ndcs.org.uk

MDougall Thu 12-May-11 15:25:37

My grandparents were deaf mutes from early childhood at the beginning of the 20th Century. They had three sons who had normal hearing but in no way did their parents' deafness prevent them from being loving and inspirational for the boys. The three boys all grew up to be very intelligent, articulate and successful in their work and families.

So although I am sure you are very concerned for your grandson, when you read about the stories published already - project forward. Remember - my grandparents raised a family in spite of their handicaps - without a National Health Service or any Social Care. They were called "Deaf and Dumb" in those times when deafness was a social stigma and in spite of it all - they succeeded.

How different an age we live in now - thank goodness. Read about how much help, love and support you can obtain. Believe in hope and postiveness because - your grandson will amaze you on how well he can cope - as long as you and his parents are encouraged to do the same.

Best Wishes.

BionicEar Fri 13-May-11 01:46:05

Hello, saw your posting whilst nosing across from Mumsnet and felt I should reply, having had personal experience 1st hand of this situation.

It's perfectly natural for your family and you to be anxious about what the future hold for your grandson.

Trust me he'll be fine with the support and love of your family. Don't underestimate what he can do, instead encourage him to reach for the skies!

I hope the hearing aids work for him. Would your family consider cochlear implants if this is offered as an option?

The best piece of advice I can offer is research what's available out there and push for the best hearing aids/implants that is available out there - don't settle for 2nd best - get the best you can to ensure your grandson has the best device to help with his hearing.

Want additional reassurance? I was born deaf, wore hearing aids for many years but now have a cochlear implant, able to communicate verbally and am in a professional occupation. Oh and I have no problem with being able to communicate either verbally or on paper! grin wink

Best wishes to you and your family.

YaYaJen Sat 16-Nov-13 11:03:24

Reassuring to read this thread, youngest GS would appear to have deafness, degree not known yet as awaiting ENT appointment for tests though we have an hours screening appointment with hearing and learning this week. The not knowing is hard for us all but hopefully will know more soon....

Skylark Mon 18-Nov-13 09:06:57

YaYaJen, I hope GS's appointments go well and once you know the degree of deafness, he is able to get the support he needs, both medically and educationally. I hope Gotthetshirt's grandson is doing well, too.

I have personal experience of living with a deaf person, and also know two people who have worked with deaf people in their professional lives.

My husband was born in the 50s with a congenital hearing loss. He had hearing aids (box on chest when a small boy) and speech therapy, went to his village primary, passed the 11+ into grammar school, went to university. He too is a professional, picked up a foreign language when working abroad (a challenge for a deaf person, as you can imagine), and is also an author. His deafness hasn't stopped him doing anything he wanted to, apart from join the army, which he would like to have done when younger, but he was deemed medically unfit.

My husband's parents were insistent that OH should go to "normal" schools - they didn't want him segregated. However, they also made decisions that OH now regrets - he was excused from languages and music on the grounds he couldn't hear well enough, and he wishes he'd been encouraged to do both now, especially as he had a job abroad for a while and had to start language study from scratch.

We have a friend who is a teacher in a deaf unit attached to a primary school. She signs with a lot of her children. From this friend and from my husband' experience, I know that it's absolutely possible for deaf children to do well in their education and to enter a range of jobs in their adult lives. It is vital, though, to push for the right path for your GS - be it "normal" school/deaf unit; implant/non-implants; sign language/speech/both; even hearing community/deaf community.

Finally, DD worked as a carer with adults who were both blind and deaf. Their needs were profound, as communication had to be through touch-sign, and their worlds were pretty much restricted to their own small community. Sadly, in most cases their parents/siblings hadn't learnt sign, so they had limited contact with their families. Whatever your GS's needs turn out to be, it is so important that the rest of the family get on board, and if he is taught to sign, that the rest of the family do too.

Wishing you well....

JessM Mon 18-Nov-13 19:26:54

The percussionist Evelyn Glennie is deaf and it has not stopped her reaching the absolute top as a musician.

YaYaJen Thu 21-Nov-13 08:54:04

Thank you so much for your support and messages, first screening today, a one hour appointment to observe and assess....initial hearing tests on the 5th December. Hopefully after both appointments everything should be a little clearer.

Hunt Thu 21-Nov-13 09:55:07

Do hope someone has pointed you in the direction of the National Deaf Childrens' Society. They seem to be a very helpful organisation- home visits, weekends away with other families with deaf children and many other helpful things.

gracesmum Thu 21-Nov-13 12:11:09

These are all such reassuring posts and while each and every one of us hopes that a baby is born "perfect" - it is wonderful to realise that they are still perfect in their own way and that in so manye cases what might have been perceived as a handicap in the past has contributed to what makes them wonderful adults.
Just one thought - My DGC used to go to Baby Signing sessions (can't remember what it was called Tinytalk perhaps?) where the leader/teacher got the mums to work with gestures with their babies, the idea being that a tiny could then communicate with its mum before being able to articulate words. They would do that thing clenching and unclenching fingers for "milk" - I remember DGS1 doing that with his night time bottle when I was looking after him and DGS 2 still does the sign for "stars" when we sing Twinkle Twinkle together.

YaYaJen Thu 21-Nov-13 14:02:45

Just back from screening at paediatric audiology with a speech therapist for an assessment through play and spoken word and as a result the juggernaut is now poised to roll into action as DGS shows no eye contact in response to spoken words, eg point to teddy, when playing with a car each, he only looked at the therapist once as if to say what are you doing crashing with my car? No sounds made like brrmm ..brrmm or toot toot...

For now we are to learn just 6 makaton signs to use when saying the word, only 6 as his eye contact is so limited and in case he will never have any hearing so then BSL will be used.

So appointments will be coming thick and fast - paediatrician, child development centre and portage which covers all the specialists and therapists who will be involved in his case.

Skylark Thu 21-Nov-13 14:16:35

YaYaJen, what a roller coaster now. You must all be devastated. Hugs... The positive thing is that he has been diagnosed early, and the sign language will help you and he to communicate together. It sounds as if the professionals are getting things sorted for him. Very best wishes to you and your DD.

ffinnochio Thu 21-Nov-13 15:20:25

... and very best wishes from me, YaYa. It's marvellous that you have such a comprehensive team of specialists to help and support your dgs.

nigglynellie Thu 21-Nov-13 15:30:05

So sorry to hear of your dilemma

JessM Thu 21-Nov-13 17:45:46

Oh that is sad for you - but good that the support seems forthcoming. Now that the issue is identified I expect you will all find ways to get his attention without the use of sound - it is so natural to use it. Babies that age are programmed to "acquire language" so hopefully once he realises that signs will get him what he wants, he will be on the case. Makaton sign for "car" anyone?

YaYaJen Fri 22-Nov-13 10:37:55

Thank you all for your messages and support, guess there will be many many challenging times to come but hopefully with all the professional support Angelo will soon be letting us know what he does and doesn't want loud and clear.

Felt for daddy yesterday when he asked if mummy and daddy could be added to the first signs to be learnt and used and the answer was no as such words are not essential for Angelo to communicate his needs even though therapist acknowledged how much it would mean to parents.....lesson I take from that is that there is no room for ego, Angelo's need to communicate is paramount

harrigran Fri 22-Nov-13 11:33:08

What a shame YaYa it is the difference between just communicating and having a conversation.

Granb Mon 25-Nov-13 17:18:58

YaYa, what a bewildering time for all of you, but most of all for your DGS.
Our DS2 is profoundly hearing impaired - from birth - he is now in his early 30's. We were incredibly lucky - he was diagnosed early - we noticed that he did not react to sound in same way as DS1 - and we had really supportive Drs and consultants (absolutely vital). We also had incredible support from educational physcologists. DS2 had aids fitted at three months - in those days it was individual box types and they did not do junior length leads - so he always wore a waistcoat with pockets on the front and back. We had extremely frequent trips to the audiology dept for new moulds, wires etc. We had a peripatetic teacher visit twice weekly from 6 months to 1 year. DS went to a nursery and had one-to-one from 2 years to 3.5 years and then went on to absolutely brilliant, infant, middle and secondary schools that each had a hearing impaired unit attached. My parents and parents-in-law learnt basic sign language for a while (we all, especially DH and I, had this dread that we would not be able to communicate with DS2 and that he would even be 'isolated' within our family!!). At the time we had DS2, counties had 'policies' as to deciding whether hearing impaired children were to be aural or signing - at that time it tended to be an all or nothing decision - DS2 was in the aural category.

We never treated him any differently to DS1 - he just had a little more leeway in some things (he would not agree I am sure). Anyway, to cut an extremely long story short..... DS2 is now a teacher, a dad to DGS1 and bump. He is truly wonderful, he has had to put up with a huge amount and to work extremely hard and we are so very, very proud of him..He does not sign, and at this stage in his life does not want to - but that may change.

The only advice that I could give to your DGS' daddy and mummy is to trust their instincts, take absolutely everything that is offered, research as much as they can, push for everything they feel they need, and to talk, talk, talk to their DS and sign, sign, sign. Babies are like sponges and communication is key - the more they can communicate with him and he with them the easier everything becomes.

Thinking of you all - it's not easy, its going to be hard work for everybody, but isn't that the same with every single little one?

Bx

Skylark Thu 28-Nov-13 13:51:11

Fantastic advice from Granb, YaYaJen.

All thoughts with you as you come to terms with the news, and begin the process of signing with Angelo. I hope it is all going as well as it can at this stage.

brcl1519 Mon 02-Dec-13 06:59:17

That is disheartening to hear ,Because these newly born children don't even have idea about the world they would be getting into ,But never to get demotivated there were and are great people who did wonder with their life even though they were born deaf