Just want to vent to people in the same boat

I have two sons, one is 3 and has just been diagnosed with autism and the other is 2 and has started to copy the behaviour of his brother (I think it's copied or its just him being 2)

I have always known my eldest son was different. At six weeks old we went to baby massage and he spent the whole time looking at the persons  next to me socks, hardly any eye contact and not really registering that I was touching him until I got to his face. Anyway I convinced myself he was just taking in his surroundings. People would say isn't he a content baby you don't know you have him...  until bedtime that is. Would he settle... we would sing to him, rock him, feed him, change him until one night I couldn't do it anymore I laid him in the moses basket to cry a minute later he was asleep. I was over stimulating him. He hit milestones late but not late enough to cause concern. So when his two year health visit came I felt quite positive that he was doing OK. She had other ideas. 18 months later and numerous medical appointments and visits he has a diagnosis of autism. 

I understand some parents feel a sense of loss when they are told their child is autistic... I didn't to me Joshua with out his uniqueness wouldn't be Joshua. Me and his dad are ready to fight for him... Over the past month that has been my realisation that everything is going to be a fight. Fight for support, fight for acceptance, fight to be understood, a fight against isolation and ignorance. We are learning how to manage and support but I don't think anything can prepare you for other people ignorance and lack of understanding. 

I don't want to keep labelling my son everytime a stranger comments about his behaviour or thinks he is rude for not acknowledging them. 

Yesterday after a horrible week away from preschool and routine due to half-term we went and visited a local reptile zoo. We thought we had it sussed. It wasn't too far away as it's not well known it should be quiet. They love animals. We will be ok. Wrong.... Packed. 

The reptiles don't like loud noise please be quiet....OK we will try. Started off OK. Then it was time to meet the snake. My eldest son wanted to see and stroke it. My youngest was screaming and having a tantrum. The keeper made an example of my two year old to explain his rules. 'I have three rules and as you can see (turning to me) you are breaking two of them already. He then goes on to explain the rules. I quickly decided to take him out. My eldest son stayed in with his dad only to be made to wait till last to touch and see the snake. I didn't feel it was appropriate to explain to the keeper in front of a room full of people that my son has autism and struggles waiting his turn. So after starting to cry and shout he was also taken out it was only as he was leaving the keeper offered for him to see the snake. This was then followed by a meltdown for about 45mins we ended up leaving the premises in order to calm him down. 

So after feeling judged and humiliated by the keeper I wrote a review of our experience. (I wasn't rude and just explained what had happened) Another guest who was also there at the same time decided to comment on my review... Saying my children were unruly and that we had no respect for the rules and that I should take responsibility for my children's behaviour and not moan about our own downfall. I was actually very upset by this comment but I kept my cool and explained our situation and that I didn't need to be made to feel more embarrassed and isolated by the keepers comments about my children's behaviour than I do without it on a daily basis. She later deleted her comments. 

I can cope and handle my children but it's the looks, comments, recommendations and judgmental ignorance of other adults I am finding difficult to deal with

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  • Good on you for fighting for your sons, it sounds like you understand their needs very well and know how to accommodate them. 

    Unfortunately other people do not. Sometimes this may be simply because there isn't yet a lot of awareness of autism out there in the general public, even some of those who have 'heard of it' still think they'd 'know it if they saw it'. Hopefully more public awareness will come in time, along with a recognition that autism isn't something you can see, but until then the only thing that can be done is to explain the situation and (like with the other guest at the zoo who jumped to conclusions) allow people to reassess their conclusions - no harm done and hopefully that person will think before jumping to conclusions next time. 

    Other people, like the Keeper, are more of a problem. In his position, working with children, it's reasonable to expect a little more awareness and a lot more in the way of people skills! You shouldn't have to explain your child in public situations like that but, just in case the person you're dealing with at the next such visit or activity is similarly lacking in consideration, it might be worth enquiring in advance what they can (and should!) do to accommodate autism so that you can all enjoy family days out like these without encountering comments and judgements you can do without.

    It's a lot more difficult in quick encounters, such as in the supermarket queue or anywhere where other people seem to feel entitled to pass judgement on the behaviour of a child (or parent) they know nothing about. What inspires these people to feel that their looks / comments are appropriate / required / helpful / necessary / or whatever is irrelevant in the moment. When it happened to me (when my children were that age) I always tried to tell myself that they weren't worth my time and energy in getting upset / angry about and sometimes it worked. Other times not, it hurt. 

    One coping strategy I found helpful was to divert their unwanted attention away from my child and onto me. I'd stare back at them or shrug and widen my eyes in a "What?" look, as if I found my child writhing on the floor perfectly normal (which, to be honest, it was in some situations).  

    I also amassed a little collection of 'reasons' for my child's behaviour to give those who were keen on sharing their parenting advice and these were usually enough to get the person to LEAVE. (From the uncensored version of "fudge off" in response to advice that my child required a physical reprimand / assault, to "She's working out her demons.",   "Practice for her teenage years",   "Monday's eh? I know how she feels.",   to "Hangover.",     "I'd move away if I were you, it's my turn next."   or whatever came to mind in the moment. Anything to make them think that I was a bigger problem than my child and so not likely to be receptive to their advice. Basically, we don't have to listen to those people so the sooner they leave the better. Anyone worth listening to wouldn't ambush a parent in that way in the first place.         

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