Posted in autism

24 hours a day 7 days a week 

Autism.
Before Z was born, autism was more of a word. A word I didn’t really understand. Yes understand. It would be that kid got autism, oh ok. 
But what does that mean?
According to the dictionary on google search autism is, ‘a mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.’ 



To me as a parent autism is much more. 
I wake up with autism, I go to sleep with autism. Autism is now my life 24 hours a day 7 days a week.

Yes, it’s hard, but, I love my son, autism makes him who he is. It’s a part of him, he I believe was born this waay. It didn’t happen from ivf, from having an emergency c section, from drinking alcohol when pregnant, because I didn’t drink, didn’t smoke, I don’t smoke, never smoked, so it’s not that. Not from being obese because I was normal bmi to get ivf. It’s not from the bottle feeding as he had breast milk for the first three months, could it be from under active thyroid? Then surely all kids whose parents have thyroid problems would have autism? See all these it’s your fault, comes down to the mother. Could it be coz dad’s bald? He’s older? He’s tall? It’s never dad’s fault. Oh, until their older then it’s the parenting, you didn’t talk to him enough as a baby, you didn’t socialise him, you weaned him too early, you didn’t do x y and z. I did those things, so maybe I over socialised him? I talked to him so much he never wants to talk ?
It’s never you done every thing correctly it’s not your fault.

He’s pre verbal, he may screech and flap from time to time, he may like his routines, he may through himself on the floor and hate haircuts, but he’s also much more. He’s a fun loving, amazing kid who I think has a heart of gold when you finally get into his little world. A smile that lights up his whole face. He loves numbers and letters, he loves to explore, he loves school, he loves the water, he’s recently just noticed the birds fly over head. Where ever he goes once people get to know him he makes an impression. 

I could watch him all day. He actually fascinates me. To be in his shoes for a few hours. To see how he deals with everything. 

When the days are hard they are hard. The hard days tend to be after the no sleep. Autism and sleep don’t seem to go very well together. 
I’m a lot luckier than others. At least when my son sleeps he sleeps, other days he can be up at 2-3 am and that’s him for the day. I don’t think you get used to the no sleep or the 3 am wake up. 

But the good days are good. To see him run, climb, laugh and flap, with not a care in the world. If I could take one thing from him, it would be don’t worry about what other people think of me. 

Some days I worry, will he ever talk, will he ever come out of nappies, will he ever have friends. He has one friend, and you can already see the bond between them after 18 months, I’d like to think it will always be there. But the reality is it’s doubtful. She will grow up, get friends do what children do. Grow up. 

This scares me. 
What will happen when I’m no longer here? Who will look out for him? He’s an only child, no siblings. 
So yes, autism scares me, but not for those reasons of being different. For people judging him for being different, for not fitting in to what people categorise as normal. Who and what are normal? Scared for the fact he may always be alone. 

I’m already noticing it a lot more lately. I for one am not bothered that he didn’t get a party invite. He’s not either as he don’t know, but one day he may know. He may care. Children who are the same age as him now notice, notice that he’s different that he don’t talk, that he don’t play. He doesn’t notice that children play together. 
I see it happening, drifting away, more so as he’s in full time school. I was warned ages ago that these things will happen for obvious reasons. Did I expect them to happy so soon? To be honest no, I’ve seen that children at two and three are really grown up, not baby like any more they are little people.
Yes people say come here, do this, but what if he can’t cope, then again what if he can and I’m not letting him try. What if he’s fine and I’m just not ready for the stares, the look another naughty child, the judgey parents? Then what people don’t see is yes he can cope, but then it all becomes too much, to much stimulation. To much noise or colour or smells, I don’t know what too much is. He can’t tell me.

I think he’s lucky, I’ve tried most things with him, he has an active social life! I’m lucky nas M allows us to do things, soft play for example when I can sit with my back to him and chat, something I feel I cant do any other time. I’m constantly watching him, for him and for others. I see these kids in the same place as Z, parents in same place as myself. I see these parents discipline their children, say no, take them home for misbehaving. Things you don’t see because obviously we don’t discipline our children! Of course there’s exceptions to this rule, there has to be for sensory overload.
So yes autism is a huge part of my life now, I’m Guessing that means people will drift in and out, they will see what they want to see and I’m ok with that, people are always there for a reason, at that point we won’t know what that reason is. They will all have points to make, they will always be right. But I live with Z, he’s my life as I said 24 hours a day 7 days a week. I am right, I know I’m right! 

Author:

first time mother, first time blogger

6 thoughts on “24 hours a day 7 days a week 

  1. I wrote a post similar to this, in my early days of blogging. What is normal? This is my normal, what you’ve written above. We just have to keep trying to figure out how far too push, I guess. Oh, and its not your fault, block that crap out xxx

    Liked by 1 person

  2. I read your article and my heart just melted. I am there with you and been there in your struggles. My little man with autism is right here interrupting my reply as we speak. Its frustrating a lot of times, looking forward and worrying. When those times pop up, I try to look back. He just came out of diapers at 5. But he’s out. He’s now starting to request at 5, but he’s requesting. So, I just tell myself, he will get to his best self, just slower than most. My one advice, when you just want to isolate, cry and eat cake is be relentless. Take a break but Don’t Give Up! Hugs.

    Liked by 1 person

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