I like to keep my blogs light-hearted, positive and happy, as that’s pretty much how I feel most of the time. But I would be lying if I implied all the time, and that life with an autistic child is all rosy and I cope just beautifully. The truth is, it isn’t and I don’t.
Today I hate autism and the reason I hate it is because I took Jessica to a pop concert yesterday, and spent most of it completely choked up inside. It’s not often we’re around other kids. We rarely go to softplay, the cinema is virtually empty whenever we go, I doubt there are parents desperately trying to entertain their kids before 10am on a sunday morning, and Jessicas party invites are few and far between. Being in a class of only 9 children, and some of those children unable to deal with sensory issues a party brings, it’s not often she brings home any invitations.
It’s when I’m in a situation where I see other children, I’m overcome with sadness. Jessicas differences become more apparent, well more apparent to me. And it hurts
The reasons I hate autism are
1) Four years in and I’m tired of having to explain Jessicas condition to people. Not friends, I’ll answer any questions they have at all, but strangers. Whether it’s some grump complaining about her behaviour (I got evil looks off a man trying to eat his lunch in a cafe last week when I was there with the girls, which I chose to ignore), or someone being friendly and talking to her. She won’t answer any questions she is asked, I answer for her. Then I feel the need to explain she has autism and doesn’t conversate well. It hurts so bad even hearing myself say that.
2) The whole ‘label’ or ‘autism doesn’t exist’ comments I’ve had thrown at me. It’s not a label, it’s and explanation, and trust me, it exists.
3) Apologies. People ‘apologising’ when I do explain Jessica has autism. But to be fair, I’m not exactly sure how anyone should act. I mean what else can you say to that little conversation stopper.
4) The assumption that people with autism don’t show empathy, or sympathy. Jessica knows when someone is hurt, and will tell me and her teachers in school. She may not run over and ask if they are alright, but she will alert someone. That’s empathy and genuine concern. She also gives the most amazing loving cuddles you could wish for.
5) Stupid damaging articles such as this one http://www.telegraph.co.uk/education/educationnews/11553012/Smartphones-making-children-borderline-autistic-warns-expert.html Talk about demonising autism and the very thought of having a child on the spectrum. Oh the actual horror!!
6) Attitudes and reactions towards my choice to stop vaccinating my children. I chose to refuse Jessicas MMR booster, and Emily hasn’t had a single vaccination since she was 16 weeks. I’m not for one second insisting the MMR is the cause of Jessicas autism, but I’m not saying it wasn’t either. I’ve spent a lot of time reading into this and concluded that I would be silly to allow Jessica to have a booster. How would I even live with myself if I had to then watch her regress? I’m not a neglectful parent, I’m a cautious one.
7) The feeling of isolation I experience every single day. Over the years I’ve lost all confidence and even refused to leave the house sometimes. I’ve missed opportunities to make friends at parent and toddler groups, and turned down meeting up with friends and nights out. How could I possibly have enjoyed myself when I’m experiencing such sadness at home?!
8) The assumption that I’m coping fine. Jessica is on the whole very well-behaved, so I must have an easy and quiet life, right? Wrong, I’m up at a time most parents only get up at at Christmas every single day. Jessica lives at a million miles an hour. She wants her breakfast the second she is awake, then her clothes on instantly, then her shoes. Meal times – she wants pizza, but she wants it now, she doesn’t have the patience to wait for it took cook, so I find myself repeating ‘wait, good waiting’. It’s exhausting both mentally and physically.
9) Milestones taking so much longer to achieve. I hate seeing other children become more responsible and mature than Jessica and I find myself wondering if she will ever even achieve some milestones. I feel consumed with guilt that I dread seeing Emily overtake Jessicas developement. What kind of a parent dreads seeing their youngest child reach milestones??
10) I’m constantly ‘on alert’. I follow Jessica meticulously around a park, I avoid softplays as I’m constantly scanning the damn thing looking for Jessica, which gives me a headache. I’m terrified she may wonder off so I can not take my eyes of her for a single second. I go to bed at night aware I will up in a few hours, a few hours less than I want to be. I’m constantly waiting for the next meltdown. Not that she has meltdowns like you would expect, she’s just very anxious and crys over the littlest thing, then will apologise for crying and I tell her she has nothing to apologise for. The anxiety is becoming more apparent, I have to speak to her really gently sometimes and offer constant reassurance.
11) Not knowing Jessicas future. I heard the other morning that only 15% of adults with autism end up in employment. I’m guessing that is down to capacity to work rather than job opportunities. I am praying she is in that 15% I want her to live alone and independently. I want her to fall in love, and have children, and live a happy life. I want everything that my other two children will have.
12) The belief that autism is a ‘gift’. Really?! Jessica is a gift, all children are a gift. But I’d like to return the autism, please. It’s somewhat hindering my beautiful child’s development and distorting her understanding of the world
13) I hate myself for having all these feelings, but I am only human and I’m entitled to my own thoughts and the ability to voice them. But they don’t come guilt free. I love my daughter unconditionally, but today, and every so often, I hate autism