“Tell me and I forget, teach me and I may remember, involve me and I learn”

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This morning I received a letter. A letter that quite honestly made me feel sick to my stomach. The letter was from the local authority, letting me know that Oscar had been turned down for an EHCP (Education Health and Care Plan) assessment and was asking whether we want to appeal or take it to a tribunal. Oscar is due to start school next September (2016), which has come round so quickly. The letter was referencing the EHCP process, which is the new name for the “Statement” that used to be issued to a child. We’re doing this now, to ensure that he has a 1:1 Teaching Assistant in place for when he starts school. The whole process is all about gathering enough evidence from his therapists, professionals, ourselves as his parents and/or anyone else involved in his life, to try to prove to “Education” why he needs that support. What the letter means, in short, is that because Oscar’s needs are currently being met at the nursery he’s at, an assessment is not required. The lady who wrote the letter is Oscar’s Case Worker and someone we met a couple of weeks ago at a meeting that we had at his nursery. Oscar’s Case Worker, the nursery, Chris and I decided that it was too early to do an assessment now because we wanted to leave it as long as we possibly could to get a more realistic evaluation of how his development is likely to be when he starts school and we were told to reapply in a few months’ time. There was no mention of this in the letter which, if I’m honest, has worried me.

I’ll start from the beginning…

Like most parents of a little one approaching school age, around this time of year we’re supposed to start thinking where we’d like our child to attend. For some it might be quite straight forward – Are they in the right catchment area? Has the school got a good Ofsted (Office for Standards in Education) rating? I think in most cases though, where to place your child is not a decision parents take lightly, but when you add in to the mix that you have a child with Down Syndrome or any other additional needs, it can raise a whole heap of questions and concerns… Oh and a ridiculous amount of form filling and paperwork!

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Parents of a child with DS have to decide from the outset, about whether to send their child to mainstream school or a special school. I have found it interesting in speaking to a number of friends and acquaintances recently, that when I’m asked if Oscar will be going to mainstream school or the alternative, it’s said with caution and, well, super tentatively. I don’t mind the question. It’s a completely valid one after all. But I do wonder why they ask it with such caution. I guess no one likes to automatically assume he’d be going to mainstream school. Perhaps people ask the question with the same mind set I had back when I went to school. That there just weren’t people with DS in mainstream education or very few at least and by that token, perhaps they’d be surprised (and I hope pleased) to hear that between 80-90% of children with DS start out in a mainstream school these days.

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For our kids, as you know, it’s all about early intervention and the fact that there is proof that with the RIGHT support, children with DS are learning to read and write for example, just as their peers do, even if it does take that little bit longer. There is masses of evidence to suggest that putting kids like Oscar alongside their peer group, it helps to aid their development. It’s my hope that in doing so everyone involved will have a greater understanding of DS and other learning difficulties and any preconceived misconceptions will be wiped out… Eventually… I know this is still a work in progress even if it does take a few more years to filter through.

We know that our kids respond better to a visual learning style. We also know that visual processing and visual memory skills are a strength of children with DS. That’s why there’s proof that reading is usually a relative strength. We know that social understanding is something that our children are good at and that non-verbal communication, such as Makaton, is an area they excel in. We know that there is more than likely going to be specific speech and language delay. Their receptive language is usually superior to expressive language and that their auditory short-term memory and auditory processing are areas of weakness.

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In considering all of the above, if the school is aware of all of this and the teaching assistant is good at his/her job (working alongside Oscar’s therapists and myself in setting him targets to achieve greater things), then the process of inclusion will absolutely work.

I had all this in the back of my mind when Chris and I first started thinking about Oscar’s education and what would be right for him. It’s our hope that he will attend a mainstream school and perhaps naively at first, in my quest to find the right setting I thought inclusion and integration would be the ethos of every mainstream school. I was mistaken.

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Our local primary school, that we’d always hoped Oscar would attend, has turned out to be our first choice. There are other schools in the area which we liked too and we are so pleased we have options to consider. However, there was one in particular, also close to us, who advertised “inclusion” who honestly couldn’t have made it any clearer that they didn’t want Oscar there. I guess as parents, you have a few filed questions that you bring out, when testing whether a setting is the right place for your child. I said that with Oscar being a summer born baby (July), he will only just have turned 4 when he starts school and while I will do my upmost to have him dry (toilet trained) the likelihood is that he’ll still be in pull ups. My question was about the provisions the school would make, should he still be in pull ups. I’d hoped she’d say that it wouldn’t be a problem and that they’d have facilities to change him. But the response of this lady, who by the way was the Assistant Head Teacher and SENCO (Special Educational Needs Coordinator), was that “with him being a summer born baby, you know you can defer his entry”. Of course I knew this but it angered me that she hadn’t answered my question. I had asked what provision they’d make for his toileting, not to be given an excuse as to why he shouldn’t attend. The rest of the meeting went kinda along the same lines. I had walked around the school and seen a little boy with ear defenders on (who she pointed out had autism). He had his back to the class, his head in his hands and was sat quietly on his own. She said he that he got quite overwhelmed at times so that’s why he was there. If this was their idea of inclusion then in that very instance I knew this wasn’t the place for my son. Anything I had asked that day, I got a sense that Oscar would have been a burden for them. I left feeling sad but mainly very cross that they had given it all the spiel about integration and inclusion, but the reality was, they blatantly didn’t want him. I’m only glad they were so obvious about it because it made my decision about where not to send him, far, far easier.

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As for the letter I received this morning? I have been trying to get hold of the lady who wrote it all day. I want to let her know that just because Oscar’s needs are being met in nursery at the moment, it doesn’t mean he shouldn’t be assessed for how they’ll need to be met at school. I want to let her know that I won’t just sit back and accept this because Oscar (and others like him) have the right to at least try in mainstream education. I will of course be polite and make sure I am well read on the process before I act but I want her to know the effect that her letter had on me and how I won’t rest until Oscar has the hours of support in place that he requires.

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A lot of children with additional needs, who’ve started school this year, have done so without an EHCP in place, mainly due to all this being a new process that everyone’s trying to get to grips with. The schools have had to appoint TA’s, at a cost to themselves, because having accepted a child with DS into the school they feel they have a duty of care to make sure that child is well looked after. We were told by various professionals to submit our form in September (which I did) only to be told it’s too soon to apply. I worry that like the school starters this year, we will miss out because now the submission will be too late.

We have been told that Oscar, and children like him, could have anything from 13 to 33 hours support a week so it’s very varied and obviously dependent on each individual child’s needs. It’s my hope that Oscar has full time support (or as close to it as possible) as 13 hours (the minimum) in my opinion, just wouldn’t be sufficient.

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Oscar started his visits to the preschool room at nursery last week. By all accounts, it’s going well but his Key Worker said to me this morning that he’s very excitable and in to everything. It’s very hard to decipher what exactly is just Oscar, a three year old boy, exploring his new surroundings and what’s the DS. I was told that now that the snack table is on show the whole time and readily available to him, he keeps playing and then going over for another snack and because the snack table has the knives out, he had a tendency to go over and play with them too.

Now we’re faced with making a definitive decision about where to send him, a whole heap of questions are flying around my head at the moment – will he cope in mainstream school? It’s hard to imagine Oscar ever “calming down” and not being quite so excitable but then I have to remind myself that some of my friends felt exactly the same way about their child who has DS, when they entered mainstream school and they’re seemingly doing well. The thought of him conforming and doing what he’s told is daunting but I know he’ll get there in the end. Should I keep him back a year seeing as he’s a summer born baby? Perhaps with an extra year in preschool and him then being one of the oldest in the year, would mean that the gap in development wouldn’t be quite so wide? Should I send him to a Special school instead? If I did, surely I wouldn’t be giving him the opportunity to at least give mainstream a try. Would I be doing him a disservice by not trying or would I by sending him and he won’t manage? I don’t believe there is a right or wrong answer as far as special or mainstream is concerned. All you can do is select the school that is right for your child, they are an individual after all. Every one of us has a right to an education and as long as Oscar is happy, I’m happy. That’s surely all there is to it.

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It’s with the right support in place that Oscar will thrive. He’ll be allowed to learn, explore, watch others, socialise and integrate just as any other little person will do as they start school. I just hope that the EHCP process is concluded as quickly and as painlessly as possible. I’m thankful for the parents who’ve been there and done it and are sharing information to help people like me. I thank my friends who are currently going through the same thing and who have given me a kick up the butt to get things moving… Without them, all this would be a lot more daunting.

I was told last week that the Local Authority make it harder for us because there are always going to be parents who sit back and accept what they’re given, even if it’s not enough for their child. They are relying on the fact that some people will do just that, even if the hours of 1:1 they’ve been issued are too few to give their child the attention they need. I’m not going to be one of those parents. I simply can’t be or else I truly believe I will have failed my little boy.

“Tell me and I forget, teach me and I may remember, involve me and I learn” Benjamin Franklin

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4 comments

  1. Alison   •  

    So, in being turned down for EHCP, does this not take away the possibility of him being accepted at a SEN school, if this is what you decide is right? In the old system, a Statement was needed for a child to attend a special needs school. And if he attends a mainstream school, being denied an EHCP will deny him access to all the extra funding and resources that would make the time spent there so enriching for him. Incredibly short sighted to deny this to him now, just ridiculous, if they are trying to stop things being started early to save money, it is even more ridiculous. My son (not DS) was statemented at 2 and we had it all established and sorted for nursery, school and beyond. Oscar deserves the very best, I know you will get it for him.

  2. Heather   •  

    Wishing you the best of luck in sorting out the right school and support for Oscar. My son had full time support during his time at primary. He has DS and a number of medical problems. At 11, he went to a special school and is now in a local college for young people with SEN. At 17, he loves to read about animals and he is a prolific writer of lists! He carries pen, paper and reading matter everywhere, preferring them to his IPad (which he does enjoy, but not as much as pen and paper).
    My son, the middle child of three, has faced many challenges over the years – he was given four hours to live on the day he was born. But despite everything,he has flourished and brought us as much joy as my other two children. I hope that Oscar brings you just as much happiness. He’s certainly seeking to at the moment.
    Best wishes,
    Heather

  3. Nicole   •  

    Oh mama, my heart hurts for you having to go through the appeal process. Our son who has autism (and started mainstream school with an EHCP this past September) was thriving at his mainstream preschool but we made absolutely clear in our application letter that without 1-1 support in school there would be disruption, stress, and wasted potential. I’m shocked that you’ve not even made it to the assessment phase, how unfair on you and sweet Oscar! Make SENDIAS your best friends, I’ll be thinking of you and checking back to see how you’re doing xx

  4. Amanda   •  

    Hello! I only just came across your blog, its really interesting reading, thank you! ~Oscar looks like such a cute little boy! You may well have already decided what to do about his schooling by now, but for what its worth I just wanted to tell you my experience. I am a trained speech and language therapist, have had a long break, and am in the process of returning to work (doing lots of supervised practice etc!). I have spent quite a lot of time helping in reception and year 1 class rooms, helping children who are delayed and observing how they cope in that environment. I really feel that some children are not yet ready for school at 4, especially if they are summer birthdays. Several of the children I got to know were a long way behind compared with their peers, they were developing fine but just not at the same pace. They did not have the language skills to get as much as their peers from the experiences they were being given in reception, which is really about developing their language, developing socially and cognitively and the beginnings of literacy. Meanwhile their peers were really able to use the reception experience to become more confident and skilful. They were therefore cognitively developed enough to begin to learn literacy, to succeed at it and therefore for it to be fun. The children who were not so advanced with oral language were not on an equal footing in play situations. If the classroom is large ( eg shared space with parallel classes) it makes for a very noisy and overwhelming environment. Im sure they learnt from their peers but since they were behind when they started, they did not have the cognitive skills yet to really grasp literacy which is an abstract concept. They were also at a disadvantage in play situations because they didn’t have the same level of language. By year 1 they were quite a long way behind, and beginning to notice it. They also found anything to do with reading a real struggle and progress was painfully slow in reception.
    My advice from this experience would be that it would be best to make sure Oscars school has small classes and not shared indoor space with other parallel classes. But I would want mainstream school if he is at all able to cope with it as children learn so much from each other. I think as a parent I would seriously consider keeping him in pre-school for an extra year or otherwise keeping him in reception for 2 years. I would not put much emphasis or effort into literacy until his language skills were more developed.
    Enjoy him! You sound like a very loving and really brilliant mum to him. All the best to you : )

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