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

Parents
  • I understand where your coming from as everything I do with/for my son is a fight & even the people you think will understand other Sen parents even etc...don't always get it. I never use my sons diagnosis as an excuse for any of his behaviour & will still treat him the same as anyone else even when it comes to disapline (maybe I shouldn't but it's only way I know) only I still feel sometimes would be nice for OTHER people to take on board the diagnosis & understand a bit rather then label him naughty (some behaviour is of course just being naughty he is still a kid after all) maybe it starts with me I first have to acknowledge his diagnosis & change how I see treat him for others to do the same? Maybe I don't treat it serious enough & people follow suit? 

  • A lot of my sons behaviour is due to sensory processing issues. That in itself is hard to understand and even harder to explain to others. I also try and discipline him for his behaviour but I feel guilty as I'm telling him off for something he can't control or even understand. I've found that visual cues, timers and heavy work (pushing, pulling, carrying a back pack around) seem to help. Tantrums I can distract with something else but meltdowns I just have to let him get on with them as nothing I do helps just makes him worse. 

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  • A lot of my sons behaviour is due to sensory processing issues. That in itself is hard to understand and even harder to explain to others. I also try and discipline him for his behaviour but I feel guilty as I'm telling him off for something he can't control or even understand. I've found that visual cues, timers and heavy work (pushing, pulling, carrying a back pack around) seem to help. Tantrums I can distract with something else but meltdowns I just have to let him get on with them as nothing I do helps just makes him worse. 

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