After weeks of going over and over things, we decided to send Elle to the school with the unit for deaf children. Elle would still have another year before starting so we decided to move house to be nearer the school and get her settled in before school started.

Elle attended the local nursery with her SSP and thoroughly enjoyed her time there. Staff commented on how happy she was and such a well liked little girl in the group. Staff would often say that everybody wants to be Elle’s friend. How lovely as a parent this was to hear after my first feeling when I found out she was deaf.

Elle would regularly have friends over for tea and to play and was invited to other children’s houses to play, which she thoroughly enjoyed.

We had some firm fears about the school Elle would be attending but everyone had reassured us this would not be a problem and would not affect Elle’s development.

The problem being that many of the children in the school did not have English as their first language. We were assured that when Elle started this would not affect her. As the other children’s language levels were low, we were told that this would help Elle settle in more.

September 2006 Big school

Elle started school full of beans about being a big girl. It wouldn’t be as scary for Elle starting a new school as she had her SSP who had been with her at her previous placement. For us as her parents it was nice to know that she had this support there for her if she felt sad.

At our next statement review it was mentioned that Elle should lose the support from her SSP as the school were not happy with the use of some signing. Elle only really used sign in new and different situations to boost her understanding and reinforce things that she was unfamiliar with. From time to time we still had to revisit the sign if she hadn’t used the language or word very much.

A bit hesitant to do this, we decided that we would phase out the SSP slowly at the start of year one.
In the first year the SSP would support Elle for speech and language therapy session and on a part-time only basis in class.

We were worried how this would affect Elle’s learning and development but were reassured that this would not be a problem and would only make her more independent.

Elles progress towards the end of year one was slow but it was put down to the fact that Elle had had a lot of change with the SCW becoming more removed.

In May 2007, Elle was diagnosed with Epilepsy. She had had a few fits at school and home and was put on a low dose of medication to help control them.

We had a review meeting at school about Elle’s progress and the new diagnosis and raised a few of our concerns regarding her support in class and out. The school reassured us she was doing well and there was no cause for concern.

We had an appointment at Oxford for a check up and asked them if we should be worried at all.
They were very concerned with Elle’s language levels and said that she had not moved from their charts that they’d been plotting her on.

We went back to school with our concerns and they reassured us things were ok and she was making progress in all the right places. They still put it down to the fact that Elle had been dealing with a lot of change with phasing the SSP out, and now having a new health problem may not be helping.

Slightly reassured but a little confused by mixed messages, we gave it a few more months to see how Elle would progress. We then had the summer holidays and Elle would soon be starting year two.

Elle started the second year with the same teacher as before, so settling in wouldn’t be a problem.

A few weeks had passed and we were still getting concerns from Oxford about Elle’s lack of progress. They had made some observations of Elle at our hospital appointments and concluded that her language/understanding matched that of a 3 1/2 year old. Elle had not long celebrated her seventh birthday. We were very concerned about this, and again spoke to the school who again said that things were fine.

In October we had a parent’s eve to see how the first term was after starting year two. We mentioned again that we were really worried about Elle’s progress. Yet again we were reassured but Elle hadn’t appeared to have made much progress since reception.

I had had a conversation with the local speech therapist via email and spoke about my concerns and she said she was worried about Elle too.

We decided we needed to take action ourselves. If everyone is doing what they are meant to then why is Elle still not progressing as she should be? There must be something else that is going on that no one has picked up on.

We asked Oxford’s advice and they suggested we go back to using some sign and the use of pictures to reinforce and rebuild Elle’s confidence. We mentioned that there could be other problems like a learning difficulty. They said it could be possible as deaf children are more likely to have other problems than just the deafness.
A few more weeks passed and we became aware that things were not ok with Elle. She’d been drawing some quite distressing pictures. There were pictures of head stones with her name on and others of her scribbled out. When asked about the pictures Elle would reply “Elle dead, everyone be sad” or “Elle gone”.

Not quite sure how to handle it, I tried to find out what was wrong and why she wanted to be gone. I found it quite hard trying to ask her questions, unsure if she knew what I meant and trying not to lead her in anyway while asking. So I used the same method back with her drawing pictures. I drew all the family – Mummy, Daddy, Hollie and Elle. We used smiley faces – happy, sad and angry. She would hold up the face that described how she felt about different pictures. Home was happy but little sis Hollie would get an angry face as ‘Hollie whinges and is naughty’, Elle replied. I said that’s what little sisters do and commented on how I used to wind my sister up as I was the youngest out of the two of us and that Nanny cat would tell Auntie Lisa off and then I would stand there laughing until one day Nanny Cat caught me laughing and then I got a right telling off. Elle thought this was a funny story.

Elle then drew me another picture of two children with her beside them and again scribbled herself out. This time she showed me the sad face. I asked her why and she replied ‘Elle no friends.’ My heart sunk. I said ‘you have friends, silly’ and named a few. She corrected me and said Elle friends and named the teachers at school. I asked her about the picture with her two friends and she said the boys said go away and that she ran to the toilet crying.

Slightly concerned about what Elle had drawn and discussed with me I went straight into school the next morning to see if they were aware that she was sad.

Quite distraught by all of this myself and quite tearful, I had a conversation with Elle’s TOD at school. They said that they would monitor the situation. They seemed to have no cause for concern. The incident that happened at lunchtime with the boys they were aware of but thought she was ok.

The next few weeks passed and Elle became more and more unsettled. It seemed like we were in school every day having a chat about our concerns.

At this point we were now doubting our own thoughts and thinking we were making a mountain out of a mole hill as no one else seemed worried.

After the parents evening I decided to stop Elle’s medication. Elle had been well for a few months and I thought I would make my own observations to see if it was the meds interfering. By this point, school kept bringing up the fact that her lack of progress may be due to the meds. (Don’t anyone else do this without medical supervision!)

I spoke to another mum who I’d met at the cochlear implant celebration day and she said I should speak to CICS.

Several hours later after phoning Tricia, telling her about all our worries, it seemed we were not alone. She mentioned about Elle being assessed by The Ear Foundation/Burrwood centre or Mary Hare. I said we were in the process of being assessed by Oxford and didn’t want to confuse the situation by adding another centre.

I also worried that a residential school after what she was drawing would tip her over the edge. However, I took the number of the school and looked them up on the net.

January ‘08

Elle had her statement review and I mentioned that I wanted Elle to be assessed at Oxford. The local speech therapist and us all thought that Elle’s language levels were very low. Again, school were still adamant that we were making a big fuss over nothing. We decided to allow the neurological assessment to go ahead and make another date to follow up the review.

Elle was seen by the neurologist and it was said that Elle didn’t have any other underlying learning problems. They also stated that she had an above average IQ level for a deaf child which was nice to hear. So what was wrong then...........!

Elle was also reassessed at school educationally and socially. We also decided to take some advice from NDCS and CICS and have our own independent assessment done on her too. We called Mary Hare and asked if it would be possible for us to go and look around and if they could assess Elle. They agreed and we booked Elle in for a three day stay at the school. She had already had her bags packed a week before we were even going. Someone was a little excited!

They assessed Elle and told us what they thought her strengths/ weaknesses were and where she would benefit from support. Elle seemed to enjoy her time there, but was glad to come home. We now had a different view on Mary Hare and came away thinking this might be the one, certainly the set up there was fantastic.

We went back to school for the review and sat down to work out what the best plan for Elle would be. We now had all the assessments back and it was clear that Elle needed more support all round and that socially a lot of care needed to be given to help boost her confidence which would in turn help with the learning. Hallelujah!

We were told that they thought our daughter was not suffering from Epilepsy, but she was depressed and her body was just shutting down. She couldn’t cope with the friendship element, plus day-to-day life for Elle was difficult as she had to work hard every day to understand what was going on and to keep up with it.

Luckily for us and I would recommend to anyone, we had our family NDCS officer present for every meeting at school and home for advice. She also turned out to be our fairy god mother because without her none of this would have been possible. She sat and gave us lots of advice and took valuable notes throughout the annual review and at other meetings. She was also a valuable support on the phone and via email.

After a few rather heated meetings, we decided the best thing for Elle was not to stay at her current school and made what seemed like the biggest decision of Elle’s life and ours as a family. We chose to send Elle to Mary Hare and would be boarding Monday to Friday.

We had the best summer with her and prepared her for her new journey ahead. She was so excited about going and had packed all the things she wanted to take with her. Elle started school on 2nd September ‘09. She went in happy as Larry with no worries. She was all smiles and was bouncing around the school with excitement. We, on the other hand, drove home very sad and tearful as we would not see her until the Friday when it was home time.

Elle in her bed that is all decorated like a circus room. Elle fell in love with the lion’s bed as soon as she saw it. It’s been her bed ever since.

Elle came home after a short week full of beans and said the magic words ‘Mummy I have friends, I’m happy’.

Overjoyed to hear this, it would make the following week easier as Elle would be celebrating her eighth birthday and it would be the first one we wouldn’t share with her. The school were fantastic and threw Elle a party and made her birthday special. I don’t think Elle even missed us. We felt it more than she did!

To date it was the best thing we have ever done for Elle and she has transformed into an independent, happy, confident little girl who loves life. Every Friday I collect her, Elle tells me ‘I’ve been happy for four days mummy’. Priceless!

We have recently gone away camping with friends and they’ve commented on how much Elle has changed and how chatty she is. We had a little accident where our friend tipped a glass of coke over Elle. Usually Elle would have burst into tears and not coped with the situation. Instead she sat quite calmly and said, ‘I’ll have a small coke next time’. The next day she joked with Tash and said ‘no throwing coke over me this evening, and tried tricking her by pretending to tip it over Tash.’

Elle would never take jokes before or be involved in them. She would take it as a direct hit at her.

Mary Hare have really worked on Elle’s confidence over the past eight months and it really shows. She will now ask if she can buy her own drink and sweets, etc. Elle even loves homework, although she needs a little help from us. Elle will always need to keep improving her language, but she has made HUGE improvements here and everyone who meets her now says how well she’s doing.

There really are no words or enough room for me to write and describe how we and Elle feel, but it is simply amazing.

This year, 2010, has just been the best for us. Elle had another cochlear implant in March and all went really well. Elle is almost fully tuned and she is already noticing the benefits from having two implants and loves them to bits.

To say a BIG thank you to the NDCS, I ran the London Bupa 10k Marathon on the 31st May to raise money for them.

I’m part a of a support group in Northampton called South Northants Deaf Kids family support group. They are fab and it would seem my story is not the only one. You just need to trust your instincts and go with your gut feelings, sometimes the professionals get it wrong too!

This evening I just spoke to Elle at school on Skype for the first time and it was amazing.

Fight for everything for your child/ren, no-one else will for you.