That said I think he provides a great insight into high functioning autism, I'm still calling it Aspergers!
I never wanted to have Lucas seen by the paediatrician, we'd had such an awful time going through it with Freya, the last thing I wanted was to start the process over again.
At the time we were still having someone in from the early years team at home to check on Freya's progress and observe her in nursery etc and it was during conversations with her about Lucas's emerging oddities that she advised me to let het refer him. You always want to be doing the best for your kids and as she pointed out, if he did need help the earlier he got it the better, and so began another round of appointments and hours of explaining and justifying.
I think he was around 18months old at the time but had already begun creating little 'rituals' for himself. The first one I noticed was that he wouldn't go upstairs with his shoes on, he'd sit on the bottom step, take them off and then go through the stair gate one step, turn and close the gate. This might just have been copying if anyone else in the house did it but they didn't, my husband normally kicks his shoes off by the door and I wear mine all day. He was very insistent on the gate being closed as well usually with me on the other side of it, if I tried to go through or leave it open he would begin screaming and throwing himself at me.
He began collecting things on trips out of the house, it started with pebbles for a while then only feathers then one day the postman had dropped elastic bands all up the road and we had to stop and collect all of those. He began to insist on stepping on every drain on the trip to Tesco and would try to bolt into the road to get to the drains there.
The sensory things were really obvious early on as we'd seen a lot of sensory seeking with Freya but Lucas's were different which further convinced me he wasn't just copying what he saw around him.
My husband was in total denial and blamed Freya for all his bad behaviour.
He's nearly 4 now and is still mouthing pretty much everything he picks up, he loves to smear stuff, ketchup, gravy, creams, pooh, anything that you can make a mess with really. This came to a head when my husband left him to run a bath and he'd done a pooh in his pants and by the time my husband came back he'd rubbed it into his face and began throwing it at his dad. You can't explain these things to people who haven't experienced it and it's horrendous and you really need to tell someone because you feel desperate and hopeless.
By age 2 we were already limited to 1 drink, I don't remember what it was at the time but it still goes like this, for months he would only drink apple juice, then it was hot chocolate, now it's hot chocolate and blackcurrant so that's something I suppose although it has to be in his dog cup and at the right temperature with just one scoop of chocolate powder or you get it lobbed back at you. Yesterday was taking things too far as he insisted Mike put the milk into the cup and into the microwave and then I put the scoop of chocolate in and stirred it before giving it back to daddy to bring to him! I don't mind making these seemingly stupid allowances for them, it's just part of who he is but sometimes you do think now hang on you're not getting away with that.
I remember a few months back we lost both dog beakers because he throws everything when he's finished with it and we had a few awful days when he wouldn't drink anything because it wasn't the right cup until I found an old pirate beaker of Freya's which he decided was acceptable and this became the new only cup he could drink from. A week or so later we found the original dog beakers and thought he'd be delighted but he refused to use them?! It wasn't until he threw the pirate beaker one too many times and it broke that he would have the dog beakers back.
I know what you're thinking, I bet he doesn't have a dog beaker at nursery and just gets on with drinking from a cup? Yes he does, I assume, I've never been told that he's not drinking but there's something different and almost magical about when they're not with you I've concluded, that means they can do things for other people that they won't do for you!
It's mainly due to the constant throwing that I'm just not prepared to give him an open cup and on the odd occasion I've tried it's been a disaster to the point he keeps saying to me at the moment, "I can't drink from a cup without a lid mummy because I always spill it don't I?"
I worry about his opinion of himself, he's a lot like me in some ways, just so full of anxiety and frustration, the total opposite of Freya. In the holidays he kept trying to do new things and saying "I'm not good at it mummy, I can't do that" I kept reassuring him that he was good at lots of things and just needed to practice new things but he's been blessed with my lack of patience so he just gives up or totally annihilates whatever it is that's causing him the frustration!
His massive anxiety is what causes him the most problems, it affects him every day at home and more so when out of the house. The Dr always says what is he anxious about? and I'm like, everything?! "What's that noise?" "There's too many people at the school gate" "That lorry is too big" "Where are we going?" "What are we going to do next?" "Who will be there?"
He has to check everything to make sure he knows exactly what's going on and what he needs to do.
Obviously he didn't get that kind of input when he first went to nursery and it was the hardest year of our lives, he went 2 days for 4 hours and it was murder. He would start screaming or sobbing at home as soon as he realised he had to go, you'd end up carrying him the whole way as he refused to walk to his doom. He did bond with one lady there in the end but we were still peeling him off us the whole time he was there and if he couldn't see her as soon as he went in he would start screaming again.
It was at this point that we noticed he wouldn't speak to other people, eventually he would speak to his special lady at nursery but no one else.
His key worker who did play therapy at home and observed him at nursery was convinced he had selective mutism and didn't think he had any signs of autism??!! This hugely concerns me as these are the people who are meant to be the experts, the paediatrician asks for their opinion before diagnosing them and yet they seem to be totally clueless, they're still looking for the old fashioned signs of no speech, no eye contact etc
She asked the nursery to implement visual aids and give him less words for instructions but I always maintained there was nothing wrong with his understanding, the visual aids help lower the anxiety but he's not stupid he doesn't need talking to like a baby.
He moved to the nursery at school where Freya went last September and he has been so much better there. I don't know if it's because he was used to going in there to drop Freya off, or because he saw Freya now and then while he was there but his key worker said it was like observing a different child. He still refused to speak and after finding a new lady to cling to he was very anxious when she left his side but slowly he began to play next to the other children.
He still panics as we round the corner to school, we have to wait until the coat area is nearly empty of parents and children before going in and he still clings onto my hand and must give me a kiss and hug before he will let go but he's finally made a friend who apparently he talks to, (he doesn't speak to him at the gate, he just hides his face and looks at the floor?!) there's no more tears about going although it's the first thing he asks on waking and he's much happier when it's a stay at home day.
He said to me the other day "sometimes I don't talk to people do I" so I asked him why don't you talk to people? "I don't like some people he replied" which I thought was fair enough but doesn't explain why he doesn't speak to his friend at the gate!
Another big problem we had from early on was his not wanting to be touched, especially when he's hurt himself. This is upsetting enough at home when you just want to help him but is really hard when we're out and about. I remember he fell over at the dinosaur park and I went to pick him up, (I should have known better really) and he went from crying to full on screaming and then kicking me with all his might. You can imagine the looks from the other parents, I expect they thought I'd hurt him or that he was just a horrible spoilt child!
Recently on holiday he fell over and I just walked round him and carried on as my husband was behind me and I knew Lucas would have a fit if I tired to help him but daddy is allowed usually. You should have seen the look on one bloke's face, I'm sure he thought I was a cold hearted cow who doesn't care about her son but he didn't know what would have happened if I'd have tried to pick him up and he doesn't know how much I love him, it's so hard and only we know what's really going on with our son and what's the best approach and sometimes we both get it wrong and he won't have either of us and we end up with a full blown meltdown because we didn't understand what he said or we did something the wrong way and I'm sure in Lucas's head it was perfectly clear and he's told us a hundred times how he likes things.
We took him to Edinburgh during the summer because he's obsessed with pandas, Edinburgh is the only place in the uk with pandas at the zoo. That was the whole reason I organised the trip and it was the worst day of the holiday. The zoo was a nightmare with my husband in a wheelchair, so steep and he's not a small bloke. I was fed up, the kids were too hot because it was the one day it decided to be uncharacteristically boiling and the pandas wouldn't come out so we had to keep going back to check and then loads of people stood in the way so we couldn't see. The kids were excited so made noise which was forbidden and we were frequently told to shut them up or take them out! It was a 7 hour drive to Edinburgh, we weren't leaving without seeing the damn pandas! We then managed to loose Lucas who wandered off to get more ice cream apparently! When we found him he refused to speak to me or even look at me, making it look like I wasn't even his mum!
I'm sure I've forgotten loads of stuff but I wanted to introduce Lucas to all those who've read about and been following Freya's journey.
Lucas is the stropiest child I know, he's gross and he regularly hits and kicks me and refuses to let me do things for him but he's also very funny and cheeky and can be very loving. He drives me absolutely insane but I wouldn't be without him.
