One of the hardest decisions…

This was challenging to write but I feel it needs to be shared to inform people’s thinking.

Towards the end of 2017 Oliver and I began to talk about the possibility of Carter having cochlear implants. There were a number of things that triggered the conversation but most importantly it happened because we wanted to make sure that what ever decision we made, we were fully informed and comfortable with the decision. Neither of us felt that we could say an outright ‘no’ to the CIs without going through the assessment process and talking to the professionals at the Southern Cochlear Implant Programme.

Given the roles that we both hold, and have held, in work and in the community, our decision to begin the assessment shocked people. For this reason we decided not to talk openly about it.

We both had preconceived ideas about what the assessment process would be like. I am pleased to say that we were completely WRONG!

Our Advisor on Deaf Children from the Ministry of Education has always been an incredible source of information, support and reassurance. She started the process and not long after that I had a phone call from the hospital. We had earlier been discharged from the ENT caseload as we had declined the offer of bilateral CIs following newborn screening, so they were wanting to make sure that I understood what the assessment was for.

It was decided that the MRI didn’t need to happen prior to the meetings with the professionals – as it normally would. This was a relief because it really gave us the space to talk to the professionals without the added pressure of possibly having Carter under a General Anesthetic for no reason.

The CI Programme made contact with us and asked who we preferred to have for our interpreters for the meetings both here and in Christchurch. This was a great start as we really felt valued and that NZSL was respected. They organised with iSign to have interpreters at the meetings and we met with the Audiologist and SLT from the CI Prog. The timing worked out well for this meeting as Zoe was on leave from school and was able to attend the meeting with us. She asked some great questions and was able to have the answers direct from the professionals. Hatten and Lisa at SCIP were brilliant they gave us space and time to think about the decision and come back to them with any further questions.

The next step was to visit Christchurch to meet with the surgeon. The Ministry of Health funded Carter and I to attend the appointment. I would have preferred Oliver to have been able to attend with me, but that wasnt funded. So just Carter and I headed down for the day.

I was SO nervous attending the meeting, I felt physically sick. I knew ‘of’ the surgeon from years ago when I was the staff interpreter at the Deaf school. I didn’t know what I was going to encounter or how I would respond to questions. I didnt want to be on the defensive but at the same time I was ready to defend our choice of NZSL as Carter’s first language. I found out I did not need to be so stressed, worried or defensive!

Carter was exhausted from the early morning travel and was asleep when we arrived at the CI surgeon’s office. I considered waking him up to give me something to focus on and take everyone’s eyes off me. In my head everyone was looking at me and questioning me on how I could be considering NOT implanting our “poor deaf baby”. In fact they were all there with their own issues seeing the variety of specialists housed in the building – they were none the wiser about who I was or why I was there.

While I was waiting a friend of ours arrived in her ‘interpreter’ role. We had notified the programme that we didn’t need an interpreter for the meeting in Christchurch as Oliver was not able to come down, however that message was not passed on. But seeing her was wonderful and made me relax. Not only is she a fellow NZSL Interpreter, she is also married to a Deaf man and has Deaf children, all of whom have CIs. So she had walked the path I was walking. Seeing her gave me strength and cleared my thinking.

I went in and talked with the surgeon. He let Carter sleep and focussed on me, I wasnt expecting that! He was very honest and direct with me with regard to the effort that would be required to ‘catch up’ on lost time for developing speech and listening. I appreciated his honesty about it being a difficult decision and that it would be a huge committment if we were to go through with it. Again he answered all the questions I had. But he stressed the decision was becoming more urgent with each passing day and that really a CI after the age of 2 would impact the outcomes.

I really appreciated the way that he valued the language and cognitive milestones that Carter has already hit. It was clear that the information shared within the programme regarding our family acknowledged the progress made and the milestones Carter had reached with NZSL as his first language.

I wanted to be able to leave the meeting with a clear decision made. However I left that office feeling even more in turmoil.

I also appreciated the surgeon giving me a deadline. He said that if we were to go ahead that we needed to do it by Carter’s 2nd birthday. This meant we really had weeks to decide and then book in the operation etc. Again this put the fear of God in me, but it was an important stage as it made me use the holiday from work to take time and reflect on everything and discuss it as a whole family. If we had to discuss and decide while still in the chaos of our daily work/school/childcare schedules, I am not sure I could have done it.

One of the biggest mental barriers for me was I could not fathom speaking to Carter. Actually using my voice with him just seems so foreign. However if we were to go ahead with the implants this would be critical to provide him with the optimal chance of exposure to spoken language to develop his listening skills. This would completely change the relationship that we have with Carter.

It is not a simple decision for any family – As a family we took the time over the Christmas break and decided we did not want to go ahead with the implants.

I now feel secure in the decision that we have made. I am sure that there are MANY MANY people who feel we have made the wrong decision, but in my heart of hearts I know we have done what is right for us as a family.

My reason for sharing this is in the hope that people’s perceptions of what families are going through following newborn hearing screening, will be more informed. The team at Southern Cochlear Implant Programme are amazing.

The decision we have made as a family is best fit for us. It does not mean we are against families who have chosen to implant their children – not at all. As parents we are all striving to do what is best for our children.

We could not have made our decision without going through the process with SCIP and talking to wide range of parents of deaf children with and without CIs. We are thankful to the SCIP team for the respect they showed us.

This has been one of the hardest decisions we’ve had to make.

 

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Don’t Worry Baby

Wow! This says it all!
Thank you Kristin Snoddon

Kristin Snoddon

I just returned from the World Federation of the Deaf Conference, which had a special focus on deaf education, and where I participated in a workshop preceding the conference. Specifically, the focus of the conference was about the meaning of inclusive education for deaf children. In the elite space that is a WFD gathering, where I rubbed shoulders with various deaf European Union and national parliamentarians, lawyers, and academics (both faculty and administrators), we confronted the dominant trends in deaf education today, where schools for the deaf are contracting and more and more deaf children lack any access to sign language in or out of school. After the brief 5 or 10 years when bilingual bicultural models of education were piloted at several schools for the deaf in the 1990s, today’s deaf elite seems to have largely accepted that cochlear implants are here to stay and many deaf schools…

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Seeing language develop!

Where does the time go!!!

We now have two teenagers and a toddler! A walking, signing 1 year old. This stage of Zoe and Elijah’s lives is a blur to me. But this time around I am savouring every moment.

Carter is developing at such a pace that every day is an adventure!

I had every intention of keeping a record of his language development but it is happening at such a fast pace, I have not been able to keep up with him.

In this clip I’ve gathered clips of the types of vocab he is using in his expressive language. You can also see his receptive skills development. Since putting this together he has now started using ‘where’ in his expressive language!

To those who are not familiar with NZSL may feel that the movements Carter is making in the clips all appear the same and have no meaning. But if you watch closely you can see changes in handshape, movement, location and palm orientation – all the components that make up signs.

You can see him watching the signer intently and then mimicking and attempting to produce the signs. You can see him answering questions with signed responses and at one stage he responds via eye gaze!

You can also see babble and repetition of signs just as you would in a hearing child developing spoken language.

I shouldn’t be surprised as the research is clear that children acquire their first language naturally when they are surrounded by multiple users of the language in a variety of settings. But seeing it in action is so exciting!

You can see the brain working – the processing and then the response is so clear.

The research briefs that have come out of Gallaudet VL2 work are really useful. I find every time I read them I pick up on something different. I recommend all parents and professionals working with deaf or hard of hearing babies and children, should read the work done by VL2.

Eye Gaze and Joint Attention

• Deaf children perceive both language and non-linguistic information visually.

• Eye gaze and joint attention between child and caregiver function together as a foundation for the development of communicative competence.

• Deaf children with exposure to sign language from birth develop the ability to shift their eye gaze between objects and people in a frequent and meaningful way from an early age.

• Language input that occurs during episodes of joint attention is linked to enhanced vocabulary, language, and literacy development in both deaf and hearing children.

• Deaf children who have developed the pragmatic ability to manage, monitor, and self-regulate their own visual attention are more prepared for the complex visual exchanges that take place in the classroom.

Advantages of Early Visual Language :

  • The brain is most receptive to language acquisition during “sensitive periods” early in a child’s development.
  • Deaf and hard of hearing children who receive early intervention services have been found to have better language outcomes up to age five.
  • High levels of family involvement have been found to produce greater language development outcomes in deaf and hard of hearing children.
  • Acquiring a complete first language during early childhood is critical for later reading comprehension.
  • Learning two languages [that is, American Sign Language (ASL) and English] is advantageous for deaf and hard of hearing children.
  • A mother’s signing skills are predictive of later language development in deaf or hard of hearing children.
  • A language foundation is an important factor in spoken language development.

 

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My life

Zoe shares her reflection

- zoe l ferguson -

I was born deaf in New Zealand, my dad is deaf and my mum is hearing and my little brother Elijah who is hearing. My dad was born deaf and his family are all deaf, also my mum’s family are all hearing. I have the best of both worlds but I rather to be in deaf world because all my life in New Zealand I went to mainstream school and they have no deaf student only me.

When I was 3 years old my mum got a job in Australia in a deaf school, so me and my brother and my parents moved to Sydney. I went to a pre school next to the deaf school, I didn’t like it so my mum asked the principal of the deaf school to see if I can go to school early because I was 4 years old. I loved my school, I had lots of deaf…

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Language continues to develop!

Tonight Carter was playing happily on the floor and as we were all interacting with him and signing around him, he got so excited and then ‘told’ us an elaborate story about his day (well that’s what I reckon it was about!)

He is now babbling with real purpose and he knows exactly what he’s expressing – its gorgeous to watch. He is babbling with more rhythmical movements and when you look at this video you can see just in 5-6 weeks the change in the rhythm, location, complexity and the pace of the ‘signing’.

 

We attended an event put on by the Wellington Assoc for Deaf Children and Carter had a great time. As we were sitting for lunch Im so thankful to Elijah for having the camera on as he captured this!!! This is the first time that Carter has mimicked actual signs. He signs MUM FOOD. #proudmum

 

Everything is happening at such a rapid pace he is communicating more, he’s cut two teeth and has worked out how to move around the floor with a combination of dragging/crawling/rolling/bum shuffling!

Never a dull moment with this wee man in the house!

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Toys

I cannot remember what we did many moons ago when Zoe and Eli were babies. We have been looking for fun, engaging toys that are not sound based. It’s definitely a challenge!

I would be interested to hear from other parents of Deaf babies – what toys did your little ones love?

Many of the ‘sound’ toys also have lights and movement so they are accessible and fun, but they are so expensive that I don’t think its worth spending the money on them when sound is the main focus of them.

 

The toys that Carter loves and work well for Deaf babies are the traditional ‘back to basics’ toys – soft toys, stacking blocks, linking chains, puppets etc

 

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From a very early age Carter loved to hold and now chew on these links

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the bouncer had this toy attached with flashing lights

 

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The one ‘v-tech’ toy we splashed out on – he loves to watch the flashing light! but only for a short time. Not a toy of choice.

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this holds Carter’s attention and he is now working out that he can cause it to move! (love the concentration on his face in this pic)

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cuddly toys are still a fave

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balls are always a fave!

 

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building towers and knocking them down – definitely one of the favourite toys!

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I recently found this toy (on sale!) and Carter loves it at bed time. When you push the tummy it plays a lullaby – which I find soothing 🙂 and it gently vibrates – which he finds soothing!

 

 

 

 

 

 

 

This is a gift Carter received from good friends of ours when he was born. This is one of his FAVOURITE toys. He is beginning to move around the floor and will move towards his dinosaurs everytime!

This year in school Zoe studied ‘Integrated Technology’- one of the assignments was to design and make a toy. Zoe thought about the situation with Carter and decided she was going use this as her focus. She created these soft cuddly hands that Carter can play with. They have movable fingers so that handshapes can be made!!

 

I am always on the look out for toys, books, puzzles that incorporate and celebrate Sign Language. So if you have a toy that you found was excellent for your Deaf baby, please let me know 🙂

I look forward to updating this as we find more and more fun and accessible toys.

 

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Milestones

There are a number of checklists available to families that look at the developmental milestones and language development.

In NZ families with deaf children are  given the Monitoring Protocols and these are checked by the parents and AODC. They are a large cumbersome document and many parents I’ve spoken to find it over whelming and don’t bother with it. It’s a shame because there is some great info in the document and it can be a great guide for families and professionals to know what to look for next. It’s just such a mission to work through the numerous sheets of paper!

Given the right conditions, deaf and hard of hearing babies should be hitting their milestones at the expected ages and stages.

Another tool that we have as parents in NZ is the Well Child book, or as I still call it the ‘Plunket Book’.

Unfortunately the Well Child book is created for the majority and is not written for Deaf children. So each time we have a visit, as I sit and reflect I on the previous month and the skills Carter has mastered, I go through the vision checklist and tick each box, then I put a big strike through the ‘hearing’ questions. On occasion, I have altered the text to make it relevant to a signing child, or I have given an example of the Deaf behaviour that it equivalent to the milestone mentioned.
At the recent ANZCED 2016 conference I was fortunate enough to be presenting in a block alongside Dr Elizabeth Levesque, from Melbourne. Elizabeth works with families and has developed the developmental scale for English and Auslan.

Bilingual English and Auslan Developmental Scale

This is much easier to use than the Monitoring Protocols and is a great guide for families and professionals.

Please excuse the extremely loud tv in the background (oops) but you can see through these clips that Carter is hitting each stage and in fact is currently displaying some of the stages beyond his age!

 

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