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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

Alysia Sherley-Price

…A Parents Perspective…

Genetic Alliance

08th July 2014

…Is a Diagnosis Important...?

the early years up to 2 years old
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
coming to terms with the unknown
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
managing the mind field
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.
schooling a personal choice
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
why is a diagnosis important its not about the label
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?
diagnosis the news we were waiting for
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….
so what is that new chapter
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..
if a diagnosis is important to parents some considerations are
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!
the future uncertain yet more certain
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…?