I’ve been told that many times in regards to autism, it gets easier.
When? When he’s a teenager and wants to sleep? When he’s been at school for a few years and learns to use pecs at home? When everyone understands autism and we don’t get judged for a meltdown outside? When?!
Today I have been talking to another parent. Her child is 2, the struggles she faces are the same struggles we were met with with Z. Food, understanding, speech, the need for routine.
I found myself saying it gets easier. Don’t get me wrong it’s still hard, we are not a normal family we never will be. Like today we went out for the day, we took it slow, buggy at the ready, we had one meltdown. That’s not bad for a day, I’ll write that post up tomorrow.
When your child is 2, you do worry oh he’s not eating this, he’s not doing that, he’s different to his peers. Yes, he is maybe different to the people you know but he’s the same as somebody. Z was the same as that child, or that child is the same as Z was. One thing this child does reminded me of another little boy over on another blog, so he’s the same as someone else too. So if you do have to compare to another child compare to another child with autism. Yes they are all different but look and you will find similarities.
Looking back only two years ago when Z was 2 and autism was on the cards, things were different. Z was different. It was much harder than it is now. For one I didn’t know then what I know now, I’m guessing in another two years I’ll know more about Z than I do now. Two years ago I remember crying, remember thinking to myself I can’t do this. Remember asking portage what to do. I remember the phase when he would scream to not get out of the car, we tried an object of reference it worked, we don’t need that anymore. When Z wouldn’t sleep for weeks, then at the time when he slept it was yes we’re over it. Now I know we’re not over it it’s just a phase and one that will go for a few weeks and come back for weeks. Life without sleep doesn’t get any easier, the knowing that it’ll go on for a few weeks but we’ll have a few days of sleep gets you through the no sleep!
When he would scream in certain shops I didn’t know why. Now I know it’s a sensory overload, currys being one. I just thought well there’s lots of TVs meaning bright colours give him something to look at. Now I know that all those TVs on, all showing something different, lots of bright lights, the music playing in the background, lots of different screen savers on the laptops, the speakers playing different tunes, to even the numbers on the microwaves must have been sensory hell for him. Without the main lights as they are different to your normal shop lights. Yes I didn’t know that either until I went in without Z to try and find out why.
Communication. This is still a daily struggle. I’ve learnt to understand Z’s needs. Simple things like if we are out and he passes me my bag he wants a drink. He’s not actually saying to me drink, but I know what he wants. I think I’m getting quite good at understanding his needs. He’s getting better with trying to get me to understand him, by taking me by the hand to say the kitchen, then it’s a guessing game as to what he wants. If he can’t find his beaker he’ll bring me in a bottle of squash. If he can’t reach the squash he’ll bring me in a bottle of water, then take me by the hand to the kitchen for the squash. Going back two years ago the way he’d get what he wanted was by going through the recycling bin looking for the empty smoothie packet so yes we have progress.
Food, two years ago I was scared he wasn’t eating the correct food or not enough, he wasn’t trying to use a spoon. Now, if he eats four boxes of micro chips that’s good enough for me. No he won’t eat anything, but we are working on new foods, new foods come old ones go. Who needs a spoon when you have fingers? We have a smoothie for breakfast and one before bed, he has one portion of fruit and veg there, some days he’ll eat an apple some he won’t, sometimes he’ll eat raisins others he won’t. I hate the amount of food we waste but I can’t not cook anything new.
This is only some of the ways Z has progressed and I suppose I have too. You just learn to deal with it, two years ago it was scary, it’s still scary but now we’re on a 15 and not an 18! In two years we’ve come a long way. I don’t have portage where she would know the answers, know that I’d had a bad week and do her best to help and to ring at the end of the week to check up on us. Now it’s just me.
It’s not only me who’s had to ‘deal’ with it. I think I was more on board from the start than my husband, he accepted it, but understanding it is completely different. I think it’s taken him two years to finally start understanding a little, he still don’t understand it all but he’s learning, just like we all are.
We fought for Z from day one, we will always be fighting for him I know that, and as we are fighting for him he’s teaching us so much more. There’s nothing more I’d love for him to talk, to tell me what he wants, I am learning that you don’t need words to show someone what you want. You also don’t need words to tell them you love them, I take the cwtches randomly off Z and the kisses to mean that I love you too Mam.