I know I have touched on his autism in most of my previous posts, but generally it's pointing out the funny side and joking about the whole situation, because, let's face it, if you didn't laugh you'd cry. What I very seldom talk about is the stress, the worry, the tears. Many parents of children with autism will tell you it's quite offensive to use the term "suffers from autism" I'm going to tell you that actually, my son does suffer. He suffers daily as a direct result of his autism. He suffers stress, anxiety, fear and upset that he wouldn't suffer were he not autistic. In this house, we ALL suffer from autism. We suffer from headaches because of the screaming. We suffer bruises, broken toys, sleepless nights. We suffer living in a house with locks on every door and no windows open so we can keep him safe and contained. We suffer trips out being cut short because he's having a meltdown for reasons we can't fathom. Let me take you back to the start.
Luca was born at lunchtime on a muggy August day. We laughed at the size of his shoulders compared to his hips, we marvelled at his jet black hair. We hugged him close and took him home the next day as proud as could be, took a million photos the way you do and thoroughly enjoyed showing him off to our friends and family. So began our life as a family of four, I loved having my 2 boys and my man (we weren't married back then...oh the shame!) and I looked forward to all the things to come. By the time he was 15 months, we were convinced we had an absolute genius on our hands! He knew so many words, he knew animal noises, he could point to parts of his body! by 18 months, I was still convinced he was a genius, but was starting to have this niggling feeling in the pit of my stomach. He didn't really follow instructions, he would run away from me outside and not care if he couldn't see me, he cried a lot for reasons I couldn't work out. I mentioned things to health visitors when I saw them but always got the same response "he's fine! Just different to your older son" so I continued telling myself he was fine, and convinced myself I was being paranoid, learned not to discuss my worries with people, even his Dad.
4 days after Lucas second birthday, we got married! One of my fondest memories is walking up the aisle and hearing Luca say "there's mummy! hello mummy!" I tried to think back to another time he'd said that and came up blank. How lovely that that first observation should happen on such a special day! But that was the last time I heard him say that, or make any other kind of remark or observation for a very, very long time. I can remember a time, maybe a month later, sitting in the bath with him and asking him what does a duck say...no response. What does a cow say? No response. Asking him to look at me, pulling his face to mine and seeing his eyes slide right past mine to stare at the wall. I still remember the sheer horror I felt. What's wrong? Maybe we stopped doing animal noises for a while and he's forgotten them.
A trip to the park. The last time I took him, maybe only a few weeks before, he'd laughed when I pushed him on the swing, and enjoyed being there. Not today, today I can't even make him stand up, he's lying on the floor screaming and kicking out at me, and everyone is staring! Shaking their heads and muttering, while I try desperately to make him stand up so we can leave. He starts blinking rapidly at things. I notice that he doesn't so much play with his toys, as just drop them on the floor or pile them up in corners. I start to look back at everything, wondering where i've gone wrong, what i've done to make him act this way? Health visitors still laugh it off, call it the terrible 2's tell me he'll grow out of it, tell me he still says words and don't seem to want to listen to my "yes he does, but..." because he may have said words, but they had no meaning to them. He'd just repeat your words straight back at you, word for word.
Things never got better, if anything they got worse. I finally managed to get somebody to listen to me when I went to his playgroup and they agreed with me that there were concerns. I finally felt justified in going to the doctor about this problem specifically, rather than just happening to mention in passing something along those lines when I took him for a temperature or a rash, and have them look at me like I was a bit strange for bringing anything up in the first place. It still took a year from our first appointment with a paediatrician to get a diagnosis, and by that time he was well over 3, still not really speaking, not potty trained, still having major tantrums over who knows what, and for me, the damage was done. I'd lost all confidence as a parent, I felt as though i'd done something to break him, it was all my fault! Getting the diagnosis provided some relief as we finally started getting some support (eventually, after many complaints and lost referrals) but I was in a very dark place.
And then comes the other onslaught, the one you don't expect. People, your family and friends even, all have an opinion about this "new fangled" condition. It's caused by lack of discipline, it's an excuse for a naughty child. It's nothing a good slap won't cure. You can see the dislike on peoples faces when they look at your child. You feel it when they glare at him as though you've been slapped in the face. You start feeling the need to defend and excuse and apologise for his every move. You see his wonderful funny side and can't figure out why others can't see it. You notice that invitations to birthday parties, toddler groups, coffee mornings, all dry up. I once had to sit in a car as my friend invited my sister in law to a trip to the park they'd organised for the next day for all the kids, and suffer the humiliation of watching her walk away without even looking at me. I've also had to suffer losing one of my very best friends, who took offence to the fact that I claim disability benefits while she has to work. I was called a bad parent because we used his DLA money to treat our babies to a holiday, one that I still think was well deserved, given what they have to deal with on a daily basis. Do people not think? If i could have a perfectly healthy child, i'd go back to work tomorrow. If Lee could, he'd work in the city and earn shitloads, but he can't, because some days I just can't cope and he has to rush home to help.
And then there's the other side. we do laugh at it all these days, and he's come on so well since being in his special school, and he's so loving and funny, his laugh is totally infectious! I've met people I would never have met otherwise and experienced compassion and kindness and understanding that blows me away. I've had people tell me what an amazing job I do. I don't, I do what any mother would do in the same situation, and probably swear about it a lot more than they would.
I wouldn't change my amazing boy for all the world, but if I could take his autism away? I'd do it in a heartbeat. I love all of my babies, I would die for any one of them, but when it comes to Luca? Well, that love morphs in to a kind of fiercely protective super power. He needs me more than the others, and will continue to for the rest of my life. Does that scare me? You bet your life it does, the thought of what will happen to him when Lee and I are gone chills me to the very bone, but right now I'm loving his quirks, his sense of humour, his learning capability, and am trying my very hardest to look forward to all the joy he is yet to bring in his own special way. And you know what? About 3 months ago he walked in and said "there's mummy, hello mummy!" And he's said it almost every day ever since :)
