Where to next, Ruby?

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The painful process of choosing between a mainstream or special school for her daughter with Down syndrome

It’s hard for me to believe that Ruby has just started her second year at infants’ school, as it seems like only yesterday that she was born on the bathroom floor.

Two years ago, I wrote for SEN Magazine (issue 44: Jan/Feb 2010) about Ruby’s first tentative steps at nursery, and so much has changed since then. Ruby has Down syndrome and, initially, I was apprehensive about how she would get on at school. I’m pleased to report, though, that these worries have been greatly eased, and Ruby continues to amaze us with her achievements.

From the outset, the school welcomed Ruby with open arms. Any issues that arose were dealt with in a professional, empathic and constructive manner, and my relationship with the inclusion team has been central to my ability to trust Ruby to their care. At times, when I have struggled to get her to school, because she refused to walk or just did not want to do as she was told, consultation with the SENCO enabled me to come up with strategies to tackle the problem – for example, putting Ruby in the car for a short distance to help take the stress out of mornings.

Ruby’s uncooperative behaviour is perhaps explained, in part, by her recent diagnosis of attention deficit hyperactivity disorder (ADHD). Receiving this diagnosis was a traumatic experience for us and it will inevitably have an impact on our choice of secondary school for Ruby.

The Inclusion team were instrumental in helping us come to terms with this additional medical diagnosis. A simple statement by the teaching assistant, “you didn’t need the doctor to tell you that”, may sound harsh, but it helped me to laugh and reminded me that I have a sense of humour. Ruby’s behaviour can overwhelm us at times and it good to laugh at some of the things she gets up to.

Ruby is prescribed Ritalin for her ADHD and, during the day, the inclusion team are able to administer this for her at school. The SENCO has arranged for a named teaching assistant to be responsible for administering Ruby’s medication and recoding it in her communication book.

Ruby tackles a climbing wall.The school has also helped me with the important issue of being honest with Ruby about her tablets and why she takes them. Like all educational establishments, the school has to abide by health and safety policies when administering medication to those in its care. In the past, I would hide her tablet in a yogurt and avoid potentially awkward discussions and the worry of her refusing to take it. Now, though, having to consider the broader implications of the need to be honest with Ruby has helped us to explain the real situation to Ruby at home.

One of my initial concerns was that Ruby would not be accepted at school by her peers and other parents. While she has been asked to go to three birthday parties (and this to me is inclusion), she has not been asked to go to any friends’ houses to play, and this saddens me. I can understand the concerns of parents, though, because Ruby requires a constant, high level of supervision, and the reality is that I may have struggled to let her go, given her explorative nature at home.

Ruby’s impulsive behaviour calls for my husband and I to be alert at all times throughout the day. Keeping her safe is a major task, as she likes to run off whenever she gets the opportunity and does not recognise when she is at risk. Indeed, she has been known to escape from her children’s centre, after school club and home. We are happy that she is inquisitive and likes to explore her environment but, from a parental perspective, she is mentally and physically exhausting.

Our number one priority has always been to secure the right educational setting for Ruby, where she can be safe and secure and can concentrate on learning. One of the biggest dilemmas we face is the choice between a special or mainstream school. The older Ruby gets, the less likely it is that mainstream schools will be able to provide the security systems that special schools can. I would love to think that she will grow out of her problem behaviour, but I am a realist and I believe my daughter loves the thrill of the chase and the freedom she gets from running away.

Why move Ruby?

It has always been our intention that Ruby would remain in mainstream school, so long as she was learning and progressing at an acceptable level. However, my husband and I agreed that once she started to show signs of plateauing, and the gap between Ruby and her peers started to widen, we would consider reviewing the recommendations of her individual education plan and perhaps start looking at a special school for her. We now think that we have reached that point.

We are mindful of Ruby’s short attention span, and the high level of adult supervision she requires in order to access the National Curriculum. The move to special school we now envisage will offer the following:

  • smaller class sizes with better staff to student ratios
  • additional teaching and support staff with SEN expertise
  • specialist equipment and resources
  • an onsite nurse to help administer Ruby’s medication and monitor her blood pressure and pulse
  • the opportunity to learn aspects of the National Curriculum at her own pace
  • the chance to develop independence skills
  • a secure and safe environment
  • behavioural strategies to tackle Ruby’s oppositional behaviour in a positive way
  • access to professionals, especially, speech therapy input, as we believe Ruby’s speech impairment is impacting on her education and ability to socialise
  • the opportunity to be with other children with additional needs, and we hope this will boost her self esteem and help her develop her identity
  • appropriate lunchtime and after school activities and summer camp
  • an inclusive environment.

Choosing a school

For me, the process of visiting special schools has been difficult, as it is time consuming and can be very emotional. Working through the list of special schools, we decided to concentrate on a specific geographical area, as we are worried about Ruby spending a lot of her time travelling.

Obviously, there are a lot of issues that have to be taken into consideration and lots of questions running through our minds. What would we do if we like a school that is in another local education authority’s (LEA’s) area? Will Ruby like the school we choose for her and will she make friends?

We know that we may have a battle on our hands, and that we will have to be advocates on Ruby’s behalf, but so far we have received good support from our local SEN assessment team. It has provided us with useful tips and vital information on special schools in the area, and the roles of the various professionals involved. The team also recommended that we visit mainstream schools, as well as special schools, in order to make a more informed decision about Ruby’s future.

Transport

Over the past three and a half years, I have had the pleasure (most of the time) of walking Ruby to school. Occasionally, when she has refused to walk, I have driven her to school. While most families face issues transporting their children to school, as parents of a child with special needs, we do not have the option of asking other parents to help out. Indeed, nobody has ever offered to help me get Ruby to school, even though many have witnessed our frequent struggles along the way.

Ruby’s behaviour can be unpredictable and I am not sure that I could manage transporting an older, bigger (and perhaps stroppier) Ruby. I have also had to put myself in Ruby’s shoes and imagine how she might feel being driven in a taxi or school bus. All things considered, we decided that a journey of half an hour each way was the maximum acceptable.

Local authority cuts

Like all councils, our local authority has had to look carefully at its resources, and I’m mindful that they have difficult decisions to make regarding reviewing services. In many of my dealings with the council, I have been constantly reminded that my daughter is a “service user”, requesting resources she may not be eligible for. For example, if we do not choose our nearest special school, I am aware that it is likely that we will have to transport Ruby ourselves.

Obviously, I understand that the Council has a duty of care to all disabled children in its area, and it must distribute resources equitably. However, I worry that Ruby’s needs may be compromised by government cut backs.

A lot has happened since I wrote about Ruby’s experiences at mainstream nursery, and I never thought we would be in this position of looking for a special school for her. The decision to place Ruby in mainstream or special school is an extremely complex and emotional one. However, my husband and I remain optimistic of our abilities to be meticulous in our goal to achieve the best outcome for Ruby. We acknowledge that we are just like any other parents who simply want the best for their child, irrespective of ability; we want an educational future for Ruby that helps her fly and imposes no limits.

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