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Alysia Sherley -Price

Alysia Sherley -Price. …A Parents Perspective… Genetic Alliance 08 th July 2014. … Is a Diagnosis Important...?. The Early Years – up to 2 years old. Alysia had a “Relatively” complicated birth From early stage:-

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Alysia Sherley -Price

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  1. Alysia Sherley-Price …A Parents Perspective… Genetic Alliance 08th July 2014 …Is a Diagnosis Important...?

  2. The Early Years – up to 2 years old • Alysia had a “Relatively” complicated birth • From early stage:- • Alysia showed lack of emotional response – as parents we did not receive much feedback • Alysia did not sit up until 9 months, crawl at 15months , “basic” walk over 2 years old.. Very limited speech • As first time parents - still in “unknown” territory , was this behaviour normal? • Initially we were competitive parents

  3. Coming to terms with the Unknown • At 2 years Alysia was confirmed with Global Developmental Delay (GDD) • Initial thoughts – denial • Like all parents – there were challenges:- • Difficult for Alysia’s younger sister, Isabelle to adjust • Watching Isabelle overtake Alysia and ultimately take on a “junior” caring role • Not sure if we were going to be in Limbo for years to come

  4. Managing the “mind”-field… • It is difficult for parents to obtain the full “end to end” level of information • Project management skills – do we need them?. • Authorities – find it difficult to process you without a label. • Google helps and hinders – helps parents, but can be dismissed by some professions.. • Aside the medical profession, there is help:- • Other parents • Prior to SWAN, there were no specific groups for children without diagnosis.

  5. Schooling – a personal choice… • As we still did not know if she would “catch up” we wanted to try mainstream • Fantastic school provided 121 support.. • However there are also challenges… • Outside of school activities were limited • Invites to parties and visits to other peoples houses had to sometimes be very considered • You have to be careful not to become slightly recluse • Inclusion can become exclusion

  6. Why is a diagnosis important ? – its not about the label.. • Frustrating to find some medical professions frequently asking – what difference would a diagnosis make? • As parents – it’s critical…why? • You have a starting point – a focus on research • It may give an indication of the future for Alysia • Are other family members affected, is this hereditary? • Potential for support groups in the diagnosed field • Your future as Parents and family • The easiest label is “Autism” • Would a lottery win change things?

  7. Diagnosis - The News we were waiting for….. • STXBP1- a memory etched • Immediately relaxed us. • Not only we knew what the issue was……We also knew what is was not…… • Not issues with the brain • Not a Chemical imbalance. • No longer had “possible” guilt as parents • Not going to affect the rest of the family… • &, &, &… • The start of a New Chapter….

  8. So what is that New Chapter…? • After 10 years – we Can now start “stage 2” • A Starting point:- • World wide research for the future… • Adden Brooke’s hospital Cambridge • We are definite about our choice of school • We are more understanding of Alysia’s behaviour and hence “psychologically” more equipped to deal with the challenges • Opens up to new support groups – although limited • For us, THIS is why it is important to have a diagnosis..

  9. If a diagnosis is important to Parents ….Some considerations are….. • Joining local support groups e.g. GA & SWAN. You learn a huge amount from networking with other parents • Be determined – you know YOUR Child better that anyone & they rely on you to fight for them • Don’t be afraid to ask and question, you have more rights than you realise.. • How will you know the latest research and who will inform me? • Be prepared to assume the project manager role • Don’t be afraid to ask for help as parents - it’s tough!

  10. The Future…Uncertain yet more Certain…? • Alysia has now moved to a special school in Hampshire • We now feel we have a relationship with a team of great professionals – but this has taken many years to build… • There are still some unknowns.. • We would like her to be as independent a possible to achieve her maximum potential. • Historical evidence would suggest that she will continue to learn • Hope for new developments in the medical & technical fields e.g. Advances in genetic science • So what’s around the corner…?

  11. Thank you for listening to my Story…

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