Day 21. The journey continues …

Day 21.  The journey continues …

Since I began the autism journey some five years ago, I have learnt one very valuable lesson.  I am the expert on my child – not the teachers, not the Paediatricians, not the Psychiatrists, not the OT’s or Speechies or Dietiticians …. me!  I am the expert on my child.

 I am the one who lives with this child 24 hours a day, 7 days a week, 365 days of every year!  I understand the subtleties of his condition.  I know what makes him happy.  I know when he’s behaving unusually.  I know when a medication suits him or not.  I know his capabilities and his limitations.  I know when to push and when not to push.  I’m not saying I have all the answers … I don’t!  But I do know that I am the most qualified person on earth when it comes to knowing and understanding my child.

 I have visited so many medical specialists since having James.  Not one single one of them had a child with Autism.  They have never lived with someone with Autism.  They therefore do not have a full understanding and appreciation of the stresses of ourlife and the needs of my child.  I know I’m not being entirely fair.  Compassion does go an awfully long way when you’re caring for a family with a child with a disability.  It really does.  It’s just that I get frustrated by being given direction or advice which simply isn’t realistic or achievable for the most part, because the person just doesn’t understand or appreciate what our life is like. 

At the end of the day as parents we are really on our own.  Although as a family we do have fantastic specialists involved with the boys –  they don’t live with us.  We see some of them once or twice a year, others perhaps once a month.  For the rest of the time we manage on our own.  A psychologist might make behavioural management suggestions for you but they don’t live with you whilst you implement them.  Often I am told to reduce stress and to keep things calm and to prioritise.  All true and that’s wonderful … but how?  The fact that they don’t actually tell me how confirms to me that they have absolutely no idea themselves.  I need people to stop talking to me like they are reciting something out of a text book or a self-help book, and I need them to give me actual practical hands on advice that is achievable in my environment!  Medical people do have a tendency to say you need to do more of this or that, but they seem to have no practical idea how to make that happen in our homes.  It’s not like they will be the ones finding PECS cards, and printing and laminating visuals now is it? Paediatricians and Psychiatrists might make suggestions about medication but then you’re on your own again until you return for your appointment.  And medication is a hugely overwhelming and stressful issue. 

Every time I visit a specialist for the first time I feel like I should explain that whilst this is my first visit to you, I’ve seen several other doctors before you, we’ve trialed several other medications before this one and I’m five years down the track.  I am no rookie and I am sceptical and reserved about your recommendations.  I have read a great deal and I will be asking a lot of questions of other specialists before I follow through with any recommendations.  I have learnt this through long, hard experience.  This is not meant to be about denigrating the specialist community at all.  I am not blaming anybody nor do I wish to underplay how much I value the medical support we have.  I am very grateful for the medical support we have – we have a great team.  I just wish sometimes I could plug them directly into my brain and experiences so they could ‘get it’!  I wish they could see things from my perspective! 

I administer a Facebook page called “Toowoomba Autism Noticeboard”.  It is a shared space where we can post information relating to ASD and ASD support services in Toowoomba.  Any information about workshops, support groups and products can be viewed and shared here.  It’s a great way to share and connect with others on a similar journey!  We are fortunate to have a number of Medical and Allied Health Professionals who regularly participate on the page.  This is very valuable and is very much appreciated by the families who participate on the page.  I am so grateful for their participation.  I have gained so much through my conversations with other parents on the page.  We are all on the same road together.  The parents are a font of knowledge and information.  When we talk, you know they truly ‘get it’!  It has been a wonderful resource for me and I hope for many others too.    is is so normalising and validating to be surrounded by other families on the same road as ours. 

I am grateful for the quality expertise of the medical and allied health professionals that form a part of our team of support for the boys.  They are each ‘experts’ in their field and I respect and admire each of them for their talents and experience.  I however am the ‘expert’ on my children.  We need to collaborate in order to ensure good outcomes for the kid – I bring my knowledge of my child and they bring their knowledge within their chosen fields.  I guess in the end it’s all about team work.  This issue is a tough one because it is actually very difficult to be truly helpful in this specific situation if you haven’t ‘walked a mile in my shoes’!  I wonder what other parents with ASD children think?

4 thoughts on “Day 21. The journey continues …

  1. Hi Libby,
    My name is Shana. I am teacher at a local primary school. I teach a class of 7 prep age kids many of whom are on the the spectrum. I want to thank you deeply for taking the time to bring us on your journey this month. The love you show for your family and the passion you hold is evident and deeply touching. Your blogs have allowed me a tiny glimpse into the world of my students and their families and I hope it will allow me to grow in my practice.
    Thank-you,
    Shana

    • Hi Shana! Thanks so much for reading and also for your lovely comments. Your class sounds wonderful. I’m sure you have many fantastic stories, resources and strategies to share – I’d love to meet you for a chat if you’re free some time. Thanks for the work you are doing with our beautiful children. Take care 😀

  2. Hi Libby,
    I would love to meet up sometime and swap stories, I have plenty of wonderful ones 🙂 the kids I work with are a constant joy.
    Shana

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