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Over the years, SEN Magazine has followed the life of Ruby, who has Down syndrome. Here, Marcia Squire-Wood picks up her daughter’s story as Ruby heads off on her first trip away from the family

When Ruby was diagnosed with Down syndrome eight years ago, never in our wildest dreams did we imagine that she would one day go off to Brownie camp, just like all the other little girls.

Since she was three years old, we always encouraged Ruby to attend community based activities, as we believe she should be given every opportunity to experience extra curricula activities, as her siblings and other able-bodied children in mainstream school do. She had been attending a local Rainbow group before she moved up to Brownies.

Ruby’s love for Brownie’s is evident every Thursday as she rushes upstairs, like a bull in china shop, to change into her uniform. The transformation when she comes downstairs is humbling for a parent to see, as she clearly takes pride in feeling like she belongs to the group and is included in every activity.

Brownie Camp

This year, we received a letter notifying us that the girls would be going on a four day Brownie camp, and asking if we wanted Ruby to attend. We immediately completed the form, paid the deposit and selfishly looked forward to Ruby going away for the weekend, as she had never been away from us before. My husband and I felt that this would enable us to concentrate our efforts on our two other children and we were excited about embarking on family adventures without some of obstacles we face on daily basis with Ruby. The combination of Down syndrome and attention deficit hyperactivity disorder (ADHD) that Ruby has impacts upon us all, as she is an extremely active little girl who does not see the dangers around her. As a family, we have to be constantly alert to Ruby’s safety needs and, to be honest, we were looking forward to some respite from this type of parenting.

A week before Ruby was due to go to the camp, my husband questioned if we were doing the right thing. Ruby did not sleep at nights and was usually up five times a night. After a lengthy discussion, it was agreed that I should inform the Brownie facilitator, Brown Owl, of Ruby’s sleep disorder. We suspected that this might put an end to Ruby’s trip. However, Brown Owl’s response was amazing. On hearing the news, she simply replied: “I don’t sleep either” and reassured me that she still wanted Ruby to go. I suggested that I could pay for a carer to accompany Ruby, but this offer was turned down as she felt Ruby would be fine without the additional help. We were not prepared for this level of inclusion, as we are so used to people putting up barriers for Ruby. 

Packing Ruby off for the trip was an emotional experience. I was excited, I cried and I wondered whether we really had the courage we needed to let her go. All I wanted to do was to wrap her up in cotton wool and keep her in our world, where she was loved unconditionally. The camp represented the wider world and we knew that other children could be cruel. We wondered if Brown Owl would be able to manage.
We had to dig deep emotionally as we drew inspiration from one of Ruby’s favourite children’s stories, Ruby Flew Too! by Jonathan Emmett and Rebecca Harry. It’s about a small duckling who finds her feet all in her own time. We realised that, as parents, we were at the stage off letting Ruby go and allowing her to find her feet without us.

Ruby’s hyperactivity means she is not always aware of potential dangers.Ruby’s hyperactivity means she is not always aware of potential dangers.Away from it all

Given Ruby’s learning disability, one of our biggest worries was how we would go about explaining to her that she would be staying away for three nights. After much thought, I decided to arrange her clothing in piles of three – three pairs of trousers, three pairs of socks, three t-shirts. Before packing her rucksack, I carefully showed her every labelled pile, explaining to her that she would be going away for three sleeps with Brown Owl, and then mummy and daddy would come and get her. She appeared to understand this explanation and helped finish off the packing.

Arriving at the venue, I had tears in my eyes as we escorted Ruby into the hall, where she was greeted by lots of Brownies shouting her name, all eager to show her where she was to sleep. We made her bed, took out her teddy and pyjamas and gave Brown Owl her prescribed medication. At this point, it was suggested that we leave, so we hugged and kissed Ruby goodbye. I felt like I was going to be sick but I just cried for the first ten minutes of our journey. We had done it: our little girl with Down syndrome had gone to Brownie camp without an additional carer.

My husband and I decided not call the first night that she was away, as we felt it was unfair. We both felt a bit apprehensive and decided to stay locally, in case we got a phone call saying she was unhappy. But that never happened.

I eventually had to contact Brown Owl on the Sunday morning and was told the following:

  • Ruby was having a fantastic time
  • she had made lots of new friends who all wanted to play with her
  • she was sleeping through the night
  • she appeared to be grasping every opportunity that Brownie camp had to offer.

Needless to say, we were delighted with the update and I will never forget the joy and the pride in Ruby that I felt at that moment.

When we collected Ruby on Monday morning, she was happy to see us, but she didn’t stop chattering about the things she had done and the exiting time she’d had. She looked tired and a little bit scruffy but most of all, she looked like she had grown. She understood that she could go away, enjoy herself with her friends, be safe and secure, and that her mummy and daddy would come back and pick her up.

For Ruby, this trip represented a huge personal milestone. For us as parents, we learned to let go and trust that we always surround Ruby with people who believe in her. She never stops amazing us.

What made this a successful trip?

  • removing mental barriers for Ruby that may have prevented her from taking part
  • reassuring us as parents that she was capable of participating with her peers
  • undertaking proper risk assessments and ensuring that Ruby was kept safe
  • having an inclusive Brownie group, who accepted Ruby for who she is
  • a can do attitude from all concerned in respect of Ruby’s abilities
  • Brown Owl’s positive approach. This was the extra-special ingredient that made the whole thing possible.

 

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