SWAN UK - Dottie's Story

Marie P
17th April 2020

Dottie

 

We’ve been using Makaton in our family for almost 9 years which is something I never expected all those years ago.  When my eldest son Henry was born we did some baby signing classes, which I found very rewarding and really bonding between us as well. When Dottie was born we signed up to do them again as I’d enjoyed it so much the first time around. Dottie is now 8 years old and we didn’t realise then what lay ahead.

Dottie has an undiagnosed genetic condition and this presents itself largely with her having learning disabilities and epilepsy. At 18 months old, Dottie still hadn’t hit many of the typical milestones, such as walking or talking; she also had other medical and health issues which became apparent around this time. 

This meant lots of hospital appointments, tests, procedures, planned and emergency hospital stays, and different therapies. These appointments and therapies are still continuing now.  We receive excellent care with everyone doing everything they can but we still don’t know what is causing Dottie’s challenges, and why she isn’t developing typically.

Dottie and Singing HandsThis has been extremely challenging over the years and I am grateful to be supported by an organisation called SWAN UK (this stands for syndromes without a name). They provide information and support to families with children and young adults with undiagnosed genetic conditions and these children are affectionately known as swans.

Dottie is largely non-verbal, although she has recently started saying some words and she has the sweetest voice, however Makaton is one of her main ways to communicate. I’m so grateful I knew about Makaton so early on and was able to easily incorporate it into our family life.

At one year old I started using 20 key signs with Dottie consistently for more than a year before she started to sign back, I am so glad I didn’t give up, it was just going to take Dottie longer to learn the signs than her brother.

Dottie with family and Singing HandsAt 3 years old Dottie’s first sign was duck, which she signed in hospital when she was very poorly: it was such a wonderful and reassuring moment after being extremely worried for the previous few days in hospital.  Drink, Eat, More and other animal signs came shortly after that.

Slowly but consistently Dottie was always making progress adding to her signing repertoire and at 5 years old knew around 300 signs.  It was at this point I attended a Makaton workshop (Levels 1 & 2), as I realised after being largely self-taught (with the help of Dottie’s SALT) I needed to learn more signs to help teach Dottie more.

The course was so valuable and really cemented my knowledge. Up until this point we weren’t using symbols very much, as I didn’t fully understand them, and the course was also very helpful for this. Both at school and home we now use a visual timetable and signs for now and next and choosing items, which Dottie responds really well too. I wish I had attended the workshop earlier and I now encourage friends who have just started using Makaton to go on the course as soon as they can.

We noticed from an early age that Dottie loved watching TV programmes with people signing, particularly Something Special with Mr Tumble.

Dottie also loves music and singing: she is a big fan of Singing Hands and really enjoys watching them. We noticed that Dottie was learning lots of new signs and picking them up quickly from Singing Hands and she would often sign songs to herself in her bedroom. Now she is able to say a few words, we hear her singing the tune, saying some of words and signing along, its so wonderful to see and hear.  Music, together with signing and singing, definitely helps Dottie to learn and retain new signs, it also helps me do the same. We get so much joy watching Singing Hands together, we’ve also been able to see them live and they are such lovely ladies too. We can’t recommend them enough.

Marie and DottieIn the last couple of weeks we have been using the Makaton resources more than ever as we are home during the pandemic and trying our best to continue Dottie’s learning. We found the Your Home resource pack easy to use, really useful and fun. Dottie particularly enjoyed picking a symbol out of the hat and finding it in the house, we’ve also learnt a few new signs through this and its been a fun game. Now Dottie’s signing repertoire is quite large we are working on putting 2 and 3 key word signs and symbols together as our next goal.

The whole family enjoy signing with Dottie. Mike, Dottie’s Dad, also self-taught or taught by me, is planning on attending a workshop and the new online courses will be very useful for him. Dottie’s brother Henry has also expressed an interest, his signing is very good, he often corrects me when I make a mistake and it's lovely watching them sign to each other.

Dotte signing Fish24th April was SWAN UK’s annual awareness day, Undiagnosed Children’s Day, raising awareness and funds to support families with children with undiagnosed genetic conditions. Many families like ours already feel isolated and lonely and need SWAN UK’s support more than ever  during these difficult times. Within the swan community, our children with undiagnosed genetic conditions are affectionately known as swans and Dottie and I would like to show you the sign for swan and share the swan in 60 seconds challenge with you.


Find further information about SWAN UK on their website
Click here for all the instructions to make your swan in 60 seconds.



At home

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