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Lewis (mosaic trisomy 18)

Leiws on the train

July saw Lewis leaving his primary school ready to start at secondary school in September. The children had a fantastic send off from Helmdon and it was wonderful to see how caring his class were right to the end! 

The decision to move Lewis from main stream to Special need provision was not taken lightly and we had looked at the possibility of sending him to a main stream school - we looked at two locally and while they both said that they would and could accommodate him it was going to be difficult and in many ways very restrictive for him. It was also very difficult as having already had one disastrous decision with regards to schools we didn't want to make another as we were still paying for the first disaster. We looked at three Special needs provisions and the one we picked was by far the best option for him and having seen how the school has expanded this year to meet the change in education criteria, that is children having to stay in education until 18, we know we have picked the right provision. It is hoped that by the time he reaches 18 that the provision is able to cater for them until they are 25!

Everything fell into place we had transport provided, and both the driver and the escort are wonderful, they allow the kids to eat their breakfast on the bus and even put up fairy lights for Christmas. As for school Lewis has settled in perfectly and has become involved in the school production, having drum lessons, represented the school in Boccia and at an athletics festival these are things Lewis would never have done before!!  He feels comfortable at Northgate, his teachers are all fantastic, they know each child and where they should be at any time of the day if they are found wandering round the school. Lewis still struggles with the cold and his form teacher has recognised this and keeps him in on cold days, we can't ask for more from them. They are gradually helping out little boy become more confident and outgoing.

Health wise well the diagnosis of hypothyroidism was not unexpected and he's coping with medication well, his feet and hypermobility cause him some problems but he just gets on with it. Having been under the orthodontist for a couple of years he has now been discharged, while he has overcrowding and some teeth which could benefit from braces it was decided that what were we going to achieve other than potentially damage his teeth because Lewis is not good at teeth cleaning and with braces you need to be meticulous and even then the danger is decay can be created so that along with the fact it would mean a GA for teeth removal, and placing of braces, a struggle for cleaning teeth and braces let alone the numerous trips to tighten them that the cons outweighed the benefits!

We enjoyed a great summer last year first holidaying in Switzerland, where even Lewis was hot and took off coat and jacket and wore shorts! Then on return to England we washed the clothes repacked and departed for the caravan where we stayed until September! What could be better! This year we have already been to the caravan and are returning again once the children have broken up from school.

As I write the final sentences Lewis is on a day trip to the Toby Carvery where they learn about food and get to see the kitchens oh and will enjoy a meal there also - Lewis loves the Toby Carvery so he was very excited. On Saturday morning we opened his school report and all we can say is wow, what a difference from 12 months ago!! He has also been out with a small group from school and done some recording with the BBC for Country File which is to be aired on August 25th. For those of you who have read how we struggled during Lewis's first 18 months at primary school, you will see how much he has changed and thriving now he is in the right environment for him.

Read on to find out more about Lewis's early school days....

The fight for Lewis’ Education! by Helen

lewis tarratt

While Lewis appears to be affected minimally by mosaic trisomy 18 and in many respects he is, it became increasingly apparent to us that he started to struggle once he entered school in September 2006.... 

Initially we were not unduly concerned as the school had been briefed. However during his 3rd term in school it was obvious to the untrained eye that there were problems which were being ignored by trained staff! In September 2007 we became concerned. Not only was Lewis unable to count beyond 10 and recognise numbers up to 10, but he was unable to read any of the high frequency words that children are usually managing during their reception year.

Lewis was also unable to tell us what school he went to or even where we lived. The homework the school were sending home was totally inappropriate and when I commented in his book, my comments were brushed aside. I was effectively accused of not getting him to try and was told that he could do it. We also noticed that Lewis was becoming increasingly distressed about going to school and he used to come out at the end of the day and kick me round the ankles. In November 2007 I had to attend the scheduled parents evening alone as we had no one to look after the three children. Lewis’ teacher asked me initially if there was anything I would like to ask, which is strange as they usually leave that bit til last. I asked outright if she thought Lewis had a problem or was he just not trying. The answer was the latter, but it was admitted that he was struggling so I suggested that reading with him for 10 minutes each day would be appropriate. She said they could manage 5 minutes and as I had requested they would document this in his reading record so that if I was able to persuade him to read at home we could see what he had done and not repeat the same pages!

Following the parents evening I noted that nothing was being documented. I raised the issue again and after a further week of nothing being done I went straight to the SENco (Special Educational Needs Co‐ordinator). My chat with her was quite positive and she was going to observe him in class the following week. Once this had taken place I went into school for a meeting with her and the classroom assistant, although it really should have been the class teacher. I should add at this point that the SENco was also a teaching assistant and not a qualified teacher! They had decided that Lewis was struggling in the area of literacy and they were planning to implement a reading scheme called Toe by Toe, but first they had to get approval to buy the book for him. I even offered to buy it ourselves just to speed up the process but was told no they would get it, but not until the New Year!

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During the Christmas break it was distressing that Lewis, usually the most solid sleeper in our house, was disturbed by us just walking into his room. My suspicions were further raised when they returned to school in the New Year as he was increasingly distressed each day. My ankles were also black and blue again. It was a fight everyday to get him dressed for school and it took both Nick and I. We virtually had to pin him down and if you let go he would strip himself of his uniform and hide. The walk to school involved pushing a pram and dragging Lewis kicking and screaming. I cannot believe we were so blind!

We were assured it was separation anxiety and he was fine once I had left but I doubted this. One lunchtime, I witnessed Lewis sat on the bench in the playground huddled up in his coat, hat, scarf and gloves, all alone and near to tears. I obviously stopped and spoke to him but that just made matters worse.

The lunchtime supervisor ignored me talking to him and when I later questioned his class teacher she knew nothing! Shortly after this Lewis saw his general paediatrician. He had gained virtually no weight in the preceding 3‐4 months, he looked pale and was so miserable his whole character had changed. I rang the Community Paediatrician for an early appointment. Mark Hunter was fantastic and saw us the following week and immediately saw we had a very unhappy little boy and asked what I wanted...“I want him formally assessed”. He agreed and said he would write to the school suggesting this, tactfully! The schools response to him was “it was not warranted”. Mark and I had also had a frank conversation in his office that day and so I continued to look for an alternative school for the boys. The school put in an extra review for Lewis in the March and it was not a satisfactory meeting. We were given no copy of his IEP (Individual Education Plan) and there was no evidence that this was being used in the classroom. The SENco, not a qualified teacher, reiterated that it was not worth getting the Educational Psychologist in to assess Lewis as nothing would be done until he was 4 years behind his peers! I knew that this is wrong and I decided to request the Educational Psychologist to assess him.

lewis rabbit

One morning Lewis had a hospital appointment in Oxford and I asked him if he would like to look at another school. He was hesitant but agreed, so I rang the primary school in the neighbouring village and they said we could go round but the Head was not in that day. We were shown round the school by the SENco who was a qualified teacher and taught in year 1‐2. Talking to her I knew that this would be a more positive environment for Lewis.

After the Easter holidays communications with their school broke down irretrievably because they failed to support either Lewis or myself each morning and ignored the fact he was kicking, screaming and hysterical in the classroom. They were both ill on the Friday but recovered on the Sunday enough to go off to an open day at a secondary school in a neighbouring county. My faith in education was restored when a teaching assistant spent time with Lewis and supported him in making a pig out of “junk”. Unfortunately the next day both boys were ill again.

By Tuesday Lewis' temperature was sky high and he had rash, one that looks typically like Meningitis but I knew that it was to do with his platelets. Following x‐ray’s, bloods and detailed examinations it was deemed that it was an infection and they would give him antibiotics. While the boys were ill we contacted the school in the next village and had a positive meeting with the

Head and the SENco, and the boys went to the school for the day on the Friday. What a change in Lewis as he went straight off and loved it! Ryan was more of a problem but the Head rang later and told me both boys were settled. We talked to the boys over the weekend, and Lewis certainly was more positive so we contacted the school and said we would see them the following Monday!

I won’t say it was all plain sailing after that but the difference was that not only did all the staff support the boys, but I was supported too. While we had been in Jersey, the E.P. (Educational Psychologist) had discussed Lewis and a decision was made to continue what had been started at the original school, but more importantly they had to gain his confidence and trust and then he would be seen in the Autumn term. This is exactly what they did. Occasionally Lewis would not want to go into school but it was always swiftly dealt with by staff and there was a difference in how he acted at this time and more importantly I no longer got kicked each day when I collected him. We then noticed, his appetite increasing, his hair growing again and he was in a deeper sleep!

Lewis and siblings

At Helmdon, Lewis had one to one support and formed a fantastic relationship with the classroom assistant. The staff were happy to discuss any progress or problems and learnt how to handle Lewis very quickly! In November 2008 the momentous day arrived when Lewis saw the E.P. I could have cried as she said I had been right and the poor little chap had got severe learning difficulties along with speech, language and comprehension and attention problems!

Nick and I sat in that office and along with the E.P. and the SENco we wrote Lewis’ I.E.P. which would be reviewed in February. The plan was that we would have enough evidence to request a “Statutory Assessment” with a view to getting a Statement of Educational Needs for Lewis, which would mean additional funding for the school, however even without the funding Lewis was receiving one to one support. February came and while Lewis had made a lot of progress it was clear he needed support to maintain this. I wrote our evidence and reasons for wanting an assessment and the school made their report and this alone was accepted so after Easter things moved at a rapid pace. The school had to submit their evidence along with further input and assessments from the E.P. who was thrilled by the progress Lewis had made but still maintained that he needed the additional support. Lewis was also assessed medically by the school nurse, who could not believe how much he had grown since she had seen him, and Mark Hunter was thrilled to see that Lewis was so much happier.... and that I was too!

I will admit that all the hassle we had with the old school had a detrimental effect on my health and resulted in a breakdown during the summer holidays, ironically once things had settled down! It was an agonising wait from May until July. I rang the Department and what a relief, we had got it! It took a few more days to get the proposed Statement and make sure all was correct. Eventually I was happy so it was sent to school to wait for the actual statement to be produced, but there was no time! On July 16th, school and I agreed Lewis’ targets for the following year and how we were going to achieve them and discussed the provisions they were putting in. The provision will be in place when they return on September 7th!

The relief that this has brought to us is immense. It is not easy to write reports about your child highlighting their problems and in turn reading reports where you realise how behind your child is. To give you some idea Lewis, being 7 and about to enter Key Stage 2, should have attained level 2’s in reading/writing, numeracy and science. Lewis has not even managed to achieve level 1 as he is still at “W” which in the case of children with additional needs is further classified into P levels, he is at P7 – P8 so he is almost there at level 1 but a long way behind his peers.

Some may be asking how is Lewis now? Well, he still has his moments going into school but if you look closely he has a grin over his face, he loves to please, and he runs off to speak to his friends. I have watched him and rather than being huddled on his own he is in the thick of it. He is more observant and eager to talk but he is still shy and while he can tell those he knows his name and where he lives/goes to school, when out of his “comfort zone” he clams up which would cause a problem if he were to get lost while out shopping or on day trips! He can now ride a two wheeled bike, previously he lacked confidence, tries to read books and we hear less of “I can’t do it”! Lewis always has and always will prefer practical based tasks such as drawing, painting and constructing with Lego over reading and writing but at least he will be supported in reaching his full potential.

Lewis at gymnastics 2

Our advice to those of you struggling to get professionals to listen to you is you know your child best. Do not let anybody put you off fighting for your child’s rights and don’t be intimidated by them. I allowed myself to be intimidated by a 28 year old Head Teacher, which made me lose faith in the Education System. Having since dealt with mature Heads (for the last 2 terms we have had an Interim Head) and staff that understand children with needs, we will never look back and now know what to look for in the next stage of Lewis’ education at Secondary school.

Ryan moves in September 2010 so we are already looking into what is available for him and whether it will suit Lewis, and if the school we pick for Ryan can provide for Lewis. One of the most important things to remember about any stage of a child’s education and care is that the professionals should work in partnership with the parents.

Life with a child who has Special Needs is tough enough without being made worse by a lack of communication. Thankfully we have had a happy outcome and I would like to thank Christine Rose for her invaluable advice during some very trying months.

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