Posted in autism, Parenting, struggles

Would I want a cure? 

Was recently reading online about the struggles of being a parent of a child with autism. 

They ranged from lack of sleep, to smearing, to communication  struggles, to more arguments  with partners. 

I still think I’m pretty lucky with Z, yes he don’t sleep all night every night and as some of you know we sometimes start the day at 3am! But we don’t have the problem with smearing. 

After chatting to a few who do, I’m glad we’ve not ‘reached’ that should we say milestone! I don’t think I could cope with poo all up the walls, and well everywhere. So hats off to you who have too. 

Yes, Z’s language isn’t there, it may never be there, but he’s starting to get his point across in what he wants. Plus I’m also lucky that’s he’s still very young and has the help now rather than waiting till he’s five and in full time school.

A comment that stuck out at me was, ‘And why don’t people  want a cure?’. 

Would I like Z to be ‘normal’? 

If that meant him not being who he is now then no. 

Of course we all have expections of our children, they crawl, walk, talk, start school, start uni, start work, get a partner, settle down and have children. In reality how often does this happen? How many children leave school with no grades, do their parents love them any less? How many end up having children very young? Suppose at the time parents maybe dissapointed but it’s not the end of the world. 

Do I want Z to lead a ‘normal’ life ? Of course, but if that means he don’t leave school with grades, find a partner a settle down I’m ok with that.  Would I ‘cure’ him for that reason ? No. 

If it came to a time when Z said, mam I want to be cured, then that’s his choice. 

Why would I want to take a part of my son away? Ok you can have the non sleeping part! Autism is part of him, it’s who he is, and without autism as I’ve said before he wouldn’t be who he is. 

Without autism, would he know his numbers to 100? Would he know the alphabet? Would his little face light up with excitement at a new finger puppet? Would he be able to tell the time? This I believe he can do. Would he have been doing thirty plus piece puzzles at two and shape sorters at six months. Honestly I don’t know. 

Without autism, would he sleep all night? Would he be toilet trained? Would he be talking? He maybe, but then he wouldn’t be Z. 

So yes, I agree being a parent of a child with autism is hard work. Maybe more when you have expections I don’t know, or if the diagnoses came as a shock. But I’m guessing at this age parenting is hard anyway. Ok, yes parenting a 3 year old you get tempers etc with autism you can get tempers mixed in with meltdowns. Yes you get judged at tutted at in the street, but so do all parents.

So really what is normal? 

When Z is older of course it’s going to be that little harder, I’m expecting it to get harder. Hopefully his language will get there and that will be a huge help. 

But for now even through the no sleep days, they are always harder, and yes I do shout, I do loose patience and then feel really guilty. I would be lying if I said I didn’t shout and everyday went smoothly! In reality I really am enjoying being a parent to a child with autism. So far he’s taught me that I can’t give up, I have to fight for him. That yes it’s ok to shout at him because we will forget it and move on, when he gives me his big gummy smile or big belly laugh. When I see for myself the progress he makes, even from the simple things of noticing something to giving some one a little more eye contact. That children with autism do show empathy. To say he don’t show his emotions is a myth, he often comes to give cwtches, or if your really special he’ll let you tickle his back! He will look at you and give you a huge smile, he’s got a friend in E and when he’s not seen her for a few days he greets her with a cwtch and a kiss. But of course that’s not affection! 


Most importantly that things do work out, I can stress and worry but it will be fine, until the next big thing that needs stressing about comes my way! 

Author:

first time mother, first time blogger

3 thoughts on “Would I want a cure? 

  1. Now I’m the other way on this subject 😊 but not because I want to change who R is & not because it’s difficult for me as a parent. I’d personally do it for R. How does it feel to be overwhelmed by lights, sounds, the environment? I’m assuming it’s quite scary & upsetting. What’s it like to play alone all the time, to have no friends? How frustrating is it to not be able to communicate? to not understand? I’m not worried about him marrying or having children, even though I’d love that 😊 but what happens when I’m not here to look after him? Will he be able to look after himself? I took him to have photos at his sister’s school last week & he took one look around & tears started rolling down his cheeks. He obviously has issues that ‘normal’ 3yr olds don’t have, issues that upset him, make him scream, make him go stiff, make him want to attack me 😊 but these are the reasons why I’d take it away, so he doesn’t get upset walking into a room, he doesn’t get scared, he doesn’t need to have a meltdown 😞. At the end of that programme ‘The A Word’ when he went missing, she said “if I could just get him home, I won’t try to change him anymore” she made such a good point & that is all the matters in the long run but id be lying if I said I wouldn’t take the autism away. I might accept it more as he gets older or I might hate it more if he struggles. Only time will tell! xxx

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