CAN I GRAB YOU ASD / AS PARENTS AND CARERS FOR A MO? TA

[PeachyChocolateEClair]

Hiya

Most of you (if not all) know me anyway, but for my work experience project I am putting together a business proposal on the notion of a chairty that provides mentor support to parents in the first year after diagnosis.

This obviously comes from my background as an ASD parent / HomeStart Organiser / working as an educational mentor (well gotta keep it simple LOL)

Could I ask you to fill out a survey for me, yo help with this project (which does count to wards my degree)? You can either post the answers here or email to my student address: [email protected]

If you dont haev a firm dx yet, please feel free to leave those questions blank and answer hypothetically. Its not an excercise in q'naire design, just a survey.

Many thanks for your help XX

(will be on TTR as well hope nobody minds )

1. Do you have (or care for) a child on the Autistic Spectrum? If s, how many diagnosed children do you care for?

1. What year did you obtain the diagnosis? (if you have more than one child, first diagnosis please)

1. Who gave you the diagnosis?

1. Were you aware of the likelihood of a diagnosis?

1. Looking back, were you given details of places you could turn to fro support at this time?

1. If yes to question 5, did you access these resources?

1. Did you feel you had a sufficient support network already established (e.g. family / friends)?

1. Had you been offered access to a Mentor (a volunteer with training and also a child with ASD themselves) to support you through the first year would you have accepted that offer? Can you explain why you would reach that decision?

1. What would you see as the role of a Mentor in this situation?

10. If you would not want a mentor on an ongoing basis, do you believe you would have benefited from someone to call on when needed- e.g. if there were school problems, with regards to benefits claims, in times of stress?

11. If you were going to advertise for a Mentor yourself, what sort or person would you be looking for?.

have mailed you

Thank you!

1. One son, have two neurotypical sons as well. 2)1995 3)Pyschology unit at Addenbrokes, Cambridge.
2. No. He is our oldest son, health visitor had got us onto speech therapy, hearing tests and attending sessions at a SN mother and toddler group. Son diagnosed at 3 years and 1 day, were not expecting the diagnosis and were shocked and disbelieving. 5)My husband recalls we were given a book with stuff about the NAS, I dont remember this, I remember a book list (I was 7 months pregnant!) We then had to move to Oxon so maybe would have got more support in Cambs if we had stayed. When referred to Oxon psychology depts were told about the support group, but this is not very local to us.
3. We assessed OASIS for lectures and playdays when we could talk to other parents but would have appreciated local help like a Mentor. Felt very lonely. 7)No. 8)YES. I knew no one else in the same boat, it is only by becoming a LEA parental supporter that I have met parents in a similar situ locally and helped them (ostensibly with educational issues but we often stay in touch). I did this because of the isolation I had felt. (9)moral support, just knowing some one else knows what it feels like as well as help in issues around behaviour or schooling etc. It is often easier to analyse other people's problems than your own. 10)YES absolutely - even now my son is 14 and I am considering a school transfer because of bullying! 11)A parent who has experienced the same feelings is the most important quality. I do not have patience or any other obvious skill but I do know that i make a very good Independant Parental Supporter! I feel a SEN specialist teacher or medic still has no idea what it is like to be a parent of an ASD child.

sorry did not work out how to copy the blurb into an email etc. hope it is ok.

Can I add I would have and still would like someone to phone when I am really upset by something at school/Scouts and hubbie is out of the country. It is really hard to have no-one you can unburden yourself to at times.