Down syndrome: Ruby goes to nursery

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Created on Tuesday, 25 October 2011 15:18

Mainstream nursery can be a daunting prospect for the family of a child with Down's syndrome, but the rewards are well worth the worry, says mother Marcia Squire-Wood 

Four and a half years ago, I gave birth to our second child, a beautiful little girl who was delivered on the bathroom floor in an unplanned home birth. When I looked at Ruby, it was love at first sight. However, as soon as I held her in my arms and gazed into her eyes, I knew there was something different about her. She had slanted eyes and stuck out her tongue. After five days in hospital and lots of tests, Ruby was diagnosed with Down’s syndrome. Life for our family has never been the same since.

We had no idea Ruby had Down’s syndrome prior to her birth, so we had no time to come to terms with this reality before it was upon us. Having a disabled child changes everything and, at times, it has not been easy for us to accept this because, to be honest, it was just not part of the plan.

However, since Ruby's birth, we have been fortunate in the multi-agency support we have received to assess her abilities and help her begin to achieve her full potential. My husband and I are both qualified social workers, so we were familiar with issues surrounding disability and the  services available to us. But becoming a service user is a different ball game altogether. Advocating on behalf of Ruby has, at times, been exhausting, but we realise that this is what every parent has to do to ensure that their child receives the opportunities they need in life.

From the outset, my husband and I envisaged that Ruby would attend mainstream nursery and infant's schools, and in September 2008, following careful planning and lots of enthusiasm on the schools part, she started at Birches Green Nursery School.

Initially, choosing the appropriate nursery for Ruby felt like entering a minefield, but the clear starting point was getting Ruby’s educational statement in place. This process can be very bureaucratic, and felt quiet daunting at first, but we understood the importance of this legal document to Ruby’s future. We were very clear that, as Ruby's parents, we wanted to be fully involved, and the support we received from the various professionals involved made the whole process easier. Numerous changes were made before the final draft was approved, but  we believe that the final statement was worth waiting for, as this document will support Ruby throughout her education.

We started searching for the right nursery quite early on, considering both mainstream and special needs settings. The process taught us a great deal, and we would suggest that parents or carers in a similar situation to us would benefit from considering the following issues when looking at a potential nursery for their child:

• what is the nursery's ethos? Do the staff and management fully understand and embrace the concept of “Every Child Matters”?
• is the nursery enthusiastic about your child attending?
• do they have any previous experience of educating a child with specific special needs?
• is the staff willing to learn new skills in order to help your child reach their true potential?
• are the resources your child would need available, and would the nursery facilitate any necessary specialist equipment?
• are the staff and management prepared to work in partnership with you as a family to overcome the inevitable obstacles you will encounter along the way?

It is crucial to take a good look around the nursery and ask yourself if you really believe that your child would be welcomed and happy there, and if they would be able to learn successfully amongst their peers. Go armed with a list of questions and do not be afraid to ask them!

As well as Down's syndrome, Ruby has an additional hearing impairment, and this further added to our concerns about how she would manage at nursery. While we were excited that she was going into a mainstream setting, we had a number of niggling doubts:

• would she be able to cope in a new environment?
• how would the other children respond to her disability?
• would she make friends?
• would she be able to communicate her needs to the staff?
• what would happen if she had any behavioural difficulties that resulted in her hurting other children?
• would she experience discrimination from other parents, particularly if her behaviour presented any problems?
• Ruby was not toilet trained (and the likelihood of her achieving this personal skill is remote), so would this cause problems at nursery?
• would her disability be seen as an excuse for “naughty” behaviour. We were clear that, while some exceptions might have to be made, Ruby needed to fit in with school rules and routines like her peers.

Once we had notified Birches Green that we wanted Ruby to go to there, and the nursery was confirmed as an appropriate resource for Ruby according to her educational statement, the Headteacher and SENCO planned the following activities in order to facilitate her smooth transition:

• Ruby attended the nursery's mother & toddler group once a week to familiarise herself with the setting
• four weeks before the end of the summer term, Ruby attended the nursery for thirty minutes
• all teaching staff were offered internal training, in respect to educating a child with Down’s, by hearing support and specialist support teams
• the SENCO & teaching assistants liaised with staff members at another school who had previous experience of working with Down’s syndrome
• the nursery introduced a home-school communication book with pictures, and recorded information about her activities so that we could discuss with Ruby at home what she had done that day. As Ruby’s language ability is limited, she would have been unable to tell us much herself
• the nursery supported staff members and parents in undertaking level one British Sign Language classes
• the nursery encouraged other children to learn to sign.

The willingness of the staff at Birches Green to learn new skills to welcome Ruby was so important to our family. While we realise that not all children or parents have been as fortunate as we have, we hope that our experiences will inspire other nurseries to offer a disabled child the opportunity to reach their full potential within a mainstream setting.

At times, this means thinking outside the box and being innovative, but the message we want people to remember is that seeing Ruby walk through the nursery doorway was one of our proudest moments to date. There were no tears, and not so much as a glance back at us, from our confident, self-assured little girl, who was simply keen to get on with playing. With the right help and support, Ruby has come a long way since entering the world on the bathroom floor.

Article first published in SEN Magazine issue 44: January/February 2010.