Talking about differing opinions about your child.

Yesterday morning Beetle (my husband) and I went live in my Facebook group: 'Katie's Classroom - Honest Parent Chat' talking about how we have handled differing opinions, reactions, comments and judgements from people up to the point of Bass's autism diagnosis.
I wanted our facebook group members to hear from Beetle because unlike my other videos this one was a bit more personal and we spoke openly and honestly about our personal experiences.
Please have a watch here or read our conversation below.  I really hope you find it useful.
A little introduction...
Beetle: The reactions, opinions and judgements from others have been quite a thing for us over the years and have formed a big part of how we have felt about our diagnosis journey/autism journey with Bass.  All the comments have come from a place of love and are well-meaning but at times have been very difficult and a bit unhelpful if I'm being honest.  I wanted to talk about this because I think this may resonate with others.
Katie:  I want to interject here and pop into the small print...this isn't going to be one big b*tching session about our friends and family!  Our friends and family have been and continue to be our biggest support and yes, all the comments over the years have all come from a place of love but from a lack of understanding or ignorance in the politest sense, which has been hard but understandable.
Beetle: I think this is going to be slightly therapeutic for us to get a few things off our chest but equally start a conversation.  I would be really interested to know...(please reply to this email) about your experiences.  How have people reacted to your child's behaviours, traits, your child's diagnosis if you have one?
What behaviours and traits did we notice in Bass and how did we all react?
Katie:  I'm going off on a slight tangent here but last night I watched an incredible youtube video whereby a mum of an autistic child likened her experience to Harry Potter - she had a wizard boy born into a muggle family and this really resonated with me.  Bass is our wizard boy born into a muggle family.  We are definitely a muggle family to his wizardry!  We were completely ignorant of autism before Bass came along.  No one in our family had been diagnosed (although now they probably would be!).  No one had any understanding of it.  We didn't know the signs and symptoms and very much in the early days it felt like the blind leading the blind.  We were recognising autistic behaviours and traits as were our family and friends and everyone had an opinion, a comment, a judgement on Bass - they could see we were raising concerns/ideas and reacting to us.  There was a constant dialogue of "was he/wasn't he" between Beetle and I.  Our biggest red flag was Bass's eating, which became a huge issue for everyone.
Beetle: We had lots of well-meaning comments like: "he'll grow out of it", "when he gets to school he'll improve"...there was a lot of chat around his food like "when he gets to school he'll see everyone else eating and then he'll eat everything too."
Katie: We had other comments like "he's a bit fussy", "all children are fussy", "you've given into him too easily", "he's manipulating you", "oh the only reason he eats spaghetti bolognese is because that's all you give him", "just starve him he'll learn" - so while this was going on I was having quite an internal battle with myself thinking "no but I have tried other foods" and "how can I physically get a child to eat if he doesn't want to eat?" - I couldn't also help but blame myself for Bass's "poor" eating.  The mum guilt was out of control because I felt so judged by my nearest and dearest.  I hated the fact I was giving him the same meal day in day out.  I couldn't help but think maybe I was causing Bass's behaviours and traits. 
Beetle: I think our family and friends were trying to make the situation better.  Saying things like "don't worry, there's nothing wrong."  "He's completely normal."  They didn't want us to worry but we were already worried and by being like this they were dismissing unintentionally what we were saying.
All parents have a "gut feeling".
Katie: I think the main point I am trying to say here is that every parent has this "gut feeling" that doesn't go away!  I think it is especially important to hold onto this in those early days because it is powerful.  You are the first person to notice those early signs and symptoms of ASD, ADHD, dyslexia etc and I think health professionals need to recognise the importance of a parents' expertise in identifying early signs and involve parents in the diagnostic process as early as possible.  We really do know them best.  It was this "gut feeling" that I had to hold onto especially in the early days where everyone and anyone had an opinion, reaction, comment, judgement about Bass. it was hard because you're vulnerable in those early days especially if you have no experience yourself of the condition you're seeing.
Beetle: I remember Kate and I going to our first nursery parents evening with Bass and the first question Kate asked was "does he have any friends?" - it was like she knew already that he would struggle in social situations yet we were told "he's absolutely fine". 
The differing reactions...
Beetle: Yes there were lots of differing reactions, which you might recognise!  There was the "don't worry" reaction - a lot of the time it felt like they were trying to fob off the situation.  Almost like they were trying to squash it and pop it under the carpet and forget about it.  I think here they were just trying to reassure us but it sadly didn't help or was not what we wanted to hear.  Similarly, we had an almost denial reaction, trying to reassure you because they think and they don't want to hear that there is a "problem".  Comments like "I don't think he is." from people who had no experience of the condition or even children!  This was hard because it felt like they were not listening to you and would try and find contrary evidence to poo-poo your theories.
Katie: All of these differing opinions, comments, reactions and judgements made it quite difficult and it made us question what we were doing.  Yes, they all came from a place of love but also a place of ignorance and lack of understanding.  As parents we pretty much feel guilty all the time don't we?  I think all these opinions played on our guilt.  I constantly had this internal dialogue in my head of "am I the cause of Bass's behaviours and traits?", "have I caused this?" "Why is he the way he is?"  It felt like we were being judged but Bass was too - Bass became the centre of everyone's chat and I often felt like screaming "we have three other children too!" - let's concentrate on them.
Don't fix it, just listen please...
Beetle: I think the main point here and on reflection and hindsight is a wonderful thing that we just want people to listen.  Listen to you and then go, "OK, how can I help?" - that would and still would be more useful.
How did people react to the diagnosis?
Katie: When we got Bass's diagnosis it was huge validation for us.  
Beetle: We had a range of reactions after Bass's diagnosis from people who were experienced with autism, who knew all about it or had children with other conditions being really positive about the diagnosis and seeing it as a really really good thing but then we had almost the complete opposite the "oh God I'm sorry.  I'm sorry to hear that."  It just illustrates the level of understanding and ignorance out there that isn't their fault. 
So what have we learnt?
Beetle: We've learnt to forgive.  All the comments, opinions, reactions and judgements have (for us anyway) come from a place of love and have all been well-meaning and with that in mind we have tried to forgive all the comments that have come from being misinformed, lack of understanding and ignorance.
There you go!  That was our open and honest chat about reactions.  What are your experiences?  Are they similar or dissimilar?  Please let me know.
Thank you! Katie. xx

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