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We launch this years awareness week with a story from Becky and supporting her 13 year old daughter
Our daughter C initially needed most support in relation to her delayed speech – she only said a couple of words until she was nearly 5. Makaton signing including the TV programme ‘Something Special’ was a Godsend! Working with a humorous and creative speech and language therapist was very helpful. Getting a diagnosis was harder as it became clear that she also had difficulties doing physical things quickly such as standing up from a chair at nursery and learning complex tasks such as tying shoe laces (something she has now learned but has probably forgotton again). It’s all too easy to regard her as lazy or unmotivated but her enthusiasm and curiosity are an inspiration, especially for discovering new places.
She is bright and easily bored, but cannot initiate a new activity and needs suggestions and sometimes persuasion which can be tiring. She loves Minecraft and other creative activities on an ipad and listening to music/learning about bands and artists as well as doing art in a group for kids with special needs.
Part of the struggle for us is negotiating her ‘normal’ older sister who finds her embarrassing at times for such things as not making eye contact with most people, getting changed with her curtains open, talking too loudly or unclearly, needing help to get onto fast escalators, wetting herself or not bothering to change clothes which are dirty, and gets frustrated at her lack of perseverance with playing card games or other things she finds difficult or not very interesting! – and then feels guilty for the way she has spoken to her. Yet C loves her sister to bits and is never (or hardly ever) unkind back.
She is full of fun and affection which challenges our (her parents) tired lack of humour and tendency to impatience. Choosing the battles can be difficult as everything seems like a battle sometimes e.g. uncomfortable brushing hair, brushing teeth properly, washing hair, difficulty sitting up straight as she also has hypermobility. Interestingly homework has never been a battle. She loves to please her teachers. School – well – that’s a long story but very glad she now has a place in a special school run by the council with a fantastic atmosphere where she is one of the more able academically.
Socially there are issues but at least now she is not spending lunch and break times sitting alone. She is such a precious gift from God to our family and we wouldn’t change a thing while realising that she will find it hard to live independently in the future and will tend to be impulsive, too easily trusting and may find it difficult to find employment, all of which cause us anxiety.
We would like to thank Becky for sharing her story with us. We have more of your stories coming thoughout awareness week.
If you affected by our stores and wish to help us, or to get help yourself consider becoming a member of the foundation, getting involved in our 30th Anniversary Appeal or contacting our helpline. Details on all this – and a lot lot more – are available across this website.