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
  • Hi Louba86

    It might be useful for you to have our helpline number on hand and information about our Parent to Parent service.

    Autism Helpline:  Our Autism Helpline team can provide you with information and advice on a range of issues. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).

    Please note that the Helpline does experience a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.

    Please see the following link for further information:

    http://www.autism.org.uk/services/helplines/main.aspx

    Parent to Parent:  You may like to contact our Parent to Parent service who offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism .

    You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: http://www.autism.org.uk/services/community/family-support/parent-to-parent/enquiry.aspx

    Hope that information is helpful to have to hand.

    Best wishes,

    Nicky - Mod

Reply
  • Hi Louba86

    It might be useful for you to have our helpline number on hand and information about our Parent to Parent service.

    Autism Helpline:  Our Autism Helpline team can provide you with information and advice on a range of issues. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).

    Please note that the Helpline does experience a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.

    Please see the following link for further information:

    http://www.autism.org.uk/services/helplines/main.aspx

    Parent to Parent:  You may like to contact our Parent to Parent service who offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism .

    You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: http://www.autism.org.uk/services/community/family-support/parent-to-parent/enquiry.aspx

    Hope that information is helpful to have to hand.

    Best wishes,

    Nicky - Mod

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