Do you ever have days where you get to the end of the day and wonder how you’ve made it through all the crap?
After 5 cups of coffee, cake and your fave babysitter, the IPad, you probably still feel like you’re hanging on by a thread come bed time.
As you all know my eldest Little Bear (9) has quite severe autism and to be honest I’m probably gonna sound like a crap mum with all that I’m about to say, but I believe I should always be honest about how I feel.
I’m afraid I’m not the type of mum that sugar coats anything after learning the hard way from hiding behind the perfection mask.
I know I should be more positive about Little Bear having autism and I should see the good bits and not just all the difficult things that come with a child having autism, and there are days where I do see good things, but most days I honestly struggle with him having autism and all the daily struggles that it brings.
Anyone that knows him will tell you he has the cutest smile, the longest eyelashes you’ve ever seen and can give a hug that will melt anyone’s heart.
He has an innocence about him and a sweet nature when he’s happy.
But the thing is most of the time things are really tough because he can’t tell us how he feels, he can’t tell us that something is annoying him or that he wants to do something, although most of the time he just wants to watch Mickey Mouse videos all day and after 9 year I know every word to every Mickey Mouse episode out there!
He has a pretty strict routine of things he likes to do daily and when that changes you’re guaranteed to have some pretty big meltdowns and tantrums on your hands.
And this is when things can get very tough.
We have days were he spends the day shouting and screaming in high pitch for most of the day and punching walls to the point where he will either leave dents or cracks on the wall.
I can’t even count the number of times I have patched up walls over and over.
Each time wanting to cry more and more and feeling more defeated than the last time.
The number of TVs, Ipads, android tablets and game consoles that have been broken due to anger and frustration is also pretty high.
And most of the time these behaviours come purely from when he gets annoyed and frustrated because the videos he’s watching are loading too slow or he can’t communicate what’s going wrong.
And it’s understandable when you can’t tell someone what’s going on it must be very frustrating and it would be awful having all these thoughts in your mind but not being able to verbalize them no anyone.
And I know it’s not his fault and most of the time he can’t help it but it doesn’t stop it from bringing me down and making me feel so exhausted and totally drained.
On days like this, I find myself wondering what he would be like if he didn’t have autism.
I think about the conversations we would have and the activities we would do together.
I’m not going to lie, when I see other people with their kids the same age as Little Bear and they’re having all these chats with them it makes me a little sad that I don’t have that with him.
And I know even having kids without autism doesn’t guarantee that your child won’t have difficult behaviours, because I have two others that can definitely test my patience at times.
And I know that family outings will not always go well but there are times where I would give anything to be able to go out as a family and enjoy an outing together without having all the tantrums to deal with.
And do simple things like sitting and watching a movie together or sitting at the dinner table and talking about our day and the things we enjoy.
I really do often wonder how different our life would be if he didn’t have autism and I know that he wouldn’t be who he is if he didn’t have autism as it’s a part of his personality and who he is but it would make his life so much easier.
And sometimes I think I probably don’t do enough to help him deal with those behaviours and don’t push myself hard enough to be a part of his world instead of wanting him to be in ours.
I think I’ve reached a stage where I feel like my efforts aren’t good enough anymore and I’m just so exhausted from always trying to fix things that I often carry this burden of not being good enough to help him.
There are days where I go to bed completely broken, on my knees and wondering how I’m going to do it all again the next day.
But he is my baby and always will be and it’s my job as his mum to keep fighting for him and I hope that maybe one day these feelings will become less and less and I’ll learn to deal with his autism better than what I do now.
And everyday is another chance to learn something in order to become better and learn to help him more.
There’s no real motive behind this post to be honest, other than giving others some awareness of the things we go through as a family and maybe helping other parents out there going to bed feeling the same.
I know it might not help change much and it probably won’t help you overcome the difficult times but it might help you feel less guilty maybe about having these thoughts about your child as we’re often made to feel like crap parents for having real and honest thoughts.