As I’m laying here being kept awake by Z, again, thinking how hard and alone this autism journey makes you feel.
I’m six months into a diagnosis and I’m not going to lie it’s not got any easier.
So thought I’d do something useful and make a post for parents who are six months behind me!
It’s hard, for me it’s the times Z don’t sleep, the times I have to function on two hours sleep. I need my sleep I’m a horrible snappy person without it.
Bet I’m not the only one who, now always seem to be arguing with the other half. Again about sleep! You get more than me, I work full days, but I need sleep more than you! Yup, childish arguements that tend to involve a lot of shouting when we’re both sleep deprived at 3 o’clock in the morning!
That night after the night before when you gotten no sleep and he beats you to sleep and snores, snores so loudly that if I could I’d pick him up and throw him out of the window! I actually hate my husband when he lays at the side of me and snores! Again nasty tired person here!
The times he cries and we have no idea why, was it a bad dream? Is he sick? Is he thirsty? Is he hungry ? Has he got a ear infection and does he need Nurofen? You think when you have a baby that cries and you don’t know why that it’s not forever, in this case it could be. That’s terrifying.
When Z started school I stopped seeing people, portage and speech being the main ones, these all get done at school. So your used to seeing professionals then bam all stopped! So again you feel all alone!
When you read posts and people say you start off grieving for the child you’ll never have, I don’t believe that’s right In all cases, I’ve not grieved for a child I’ll never have, I have Z, and Z alongside autism have taught me many things.
I wouldn’t change Z because with out autism he wouldn’t be who he is. Sometimes for that brief moment if I could I’d take autism away just for Z to be able to tell me why he’s crying, I would.
When you see other children playing with one another and Z just oblivious to it all, it’s hard for that brief moment as that’s what children are supposed to do, but take one look at Z running, taking things in, and smiling makes it all go away. He’s happy, that’s what matters.
Yes, it’s hard, more so from other people giving little glances, then how old is he. As if he shouldn’t be doing this or he should be doing that!
He’ll get there, and when he does it’ll be as important as if he had done it when he should have.
I for one and I know other parents with children on the spectrum would love to get in their heads. Just for an hour and I’m guessing it would be too much and I’d need to leave.
I also know these sleepless nights are short lived, he will go back to sleeping for a few weeks, then I’ll be fine. I’ll look back and say, ‘Oh yea, remember that time?’ Look at me in the summer when I couldn’t get him out of the car, now he gets in and out and it’s all good.
He’s learning things all the time, like putting the letters of the alphabet into order. He knows when we’re going to soft play, so he knows what day of the week it is. He goes to get his bag of he wants something or to even go out. To go to school he’s going and getting his jumper! What kid goes to get his uniform?!
I wouldn’t change him, when he hits certain achievements I’ll celebrate them more as it just makes what he does do that little extra special!