This week has been L's third week back at nursery and he finally seems to be settling back in and getting in the swing of things with the taxi again. Unfortunately his taxi broke down yesterday which resulted in S having to collect L from nursery so cue tears this morning for daddy to pick him up again. Apart from that, L seems more relaxed in general and when he is feeling like that the whole house is happier and less stressed. Like any parent - if your child is unhappy it has a knock on effect to how you feel so I definitely feel better now I know L is getting back to his old self.
R had her eye appointment at hospital this week and I'm pleased to say it was quite positive with the consultant saying her eyes looked healthy and now we just have to wait on her next appointments at two other hospitals before meeting back with the consultant to discuss the findings and how we move forward from here. When an appointment drops through the door for R, I get that stomach churning feeling I used to get when L's appointments would come in. It's a reminder that all is not well somewhere and always ignites the flames of anxiety deep down in me. I'm trying not to worry but when the most important things in your life are involved, it's hard not to stress.
Towards the end of last year I was lucky enough to take part in an autism course called Earlybird which is for parents and carers of children with autism. The course was over a few months and involved group sessions with other parents, as well as home visits where videos were taken of each of us interacting with our child and then shown to the rest of the group at the next meeting. The course is to help parents to understand their child's autism and how to handle and cope with problem behaviours as well as learning to communicate more effectively with your child. The main reason I wanted to do the course was to meet other parents in our situation. While I have a lot of support in family and friends, and also online communities, I really wanted to meet more people who could relate to the every day challenges in raising a child with autism. During the first group video session I noticed one of the other mums start to cry when the video of her son came on. I sat across the room and instantly felt myself well up and put my head down as I wiped away a silent tear. I wished at that moment I was sat beside her so I could put my arms around her. I wanted to tell her that I knew. I knew how she was feeling because I felt it too. And there in that moment I was so glad I was on the course because no one knew how I felt as much as the people in this room. No one quite understands the exquisite pain of raising a special little person. We have all taken the same journey. We all landed in Holland. I felt a sadness when the course finished as it almost felt like a weekly therapy session and I knew I would miss seeing everyone and would definitely miss our chats. I have a desperate need and want to keep these people in our lives, to travel our journeys together, to share our tips and stories, and to just generally be there for each other. So this post is for you, my earlybird mums (and dads!) Here's hoping it's the start of some beautiful friendships.
Thursday 23 January 2014
Wednesday 15 January 2014
What not to say
I have been looking through a lot of R's baby photos recently and it made me feel a bit nostalgic and I got out one of L's baby albums to flick through. Looking at his gorgeous smile and his eyes shining at the camera you would never know this was a baby who was going to grow into a child with autism. Sometimes it's very confusing and I can't quite see how it happened. When I look at a picture of him on my knee and him copying me while I stick my tongue out at the camera, it doesn't make sense that this baby in the picture has autism. For quite a long time, I couldn't actually look at L's baby pictures. It's hard to explain but it was painful to look at them. The pictures were of a time before autism hit us and the biggest worry I had was whether or not I was going to get a full nights sleep. They were of a much happier and carefree time.
It's been a strange journey with regards to how people react to L's autism. For some people it's almost a bit of a taboo subject. They will talk about anything but autism and will keep the conversation going so the 'A' word never gets a chance to creep in. What some people fail to understand is that my children are the biggest part of my life and autism is part of all of our lives through L and I would rather people acknowledged that than awkwardly skip past the subject. I would never be embarrassed or offended by someone showing an interest - after all, talking about autism and spreading awareness is only a good thing. If I was speaking to a friend I would always ask after their children. It's common courtesy if nothing else.
Some people try and give advice which can be hugely irritating when it becomes clear within 5 seconds that they know as much about autism as I know about quantum physics (which is zilch by the way). Parents have an almost uncontrollable urge to give advice to other parents, they just can't help themselves. I'm a dignified person and have smiled through gritted teeth while I've listened to people telling me that L just needs a 'firmer hand'. I've learned to just shake these little nuggets of parenting advice off while at the same time imagining slapping the person in the face.
And there are always people who don't really know what to say so throw cliches at you. What doesn't kill you makes you stronger and What's for you won't go by you. The religious amongst us say things like "it's all part of Gods plan" and "God doesn't give you more than you can handle". These ones make me laugh the most as I don't believe in God so when people start throwing that at me it does get my back up. Was the Holocaust part of Gods plan? I know these people mean well and it's more because they don't know what to say but that's the thing - it's ok to not know what to say sometimes.
Probably the worst is the sympathy responses. People who tell me they're sorry etc. Here's a thought - don't be sorry! Of course I know people mean well and they just don't know what to say but there is no sympathy required unless there is a corpse present. Sorry is insulting. So if you are tempted to give someone in my position some pity, just don't. I doubt it would be well received. Give them understanding instead. And most of all just be a friend - to me and my son - and I promise I will do the same for you.
It's been a strange journey with regards to how people react to L's autism. For some people it's almost a bit of a taboo subject. They will talk about anything but autism and will keep the conversation going so the 'A' word never gets a chance to creep in. What some people fail to understand is that my children are the biggest part of my life and autism is part of all of our lives through L and I would rather people acknowledged that than awkwardly skip past the subject. I would never be embarrassed or offended by someone showing an interest - after all, talking about autism and spreading awareness is only a good thing. If I was speaking to a friend I would always ask after their children. It's common courtesy if nothing else.
Some people try and give advice which can be hugely irritating when it becomes clear within 5 seconds that they know as much about autism as I know about quantum physics (which is zilch by the way). Parents have an almost uncontrollable urge to give advice to other parents, they just can't help themselves. I'm a dignified person and have smiled through gritted teeth while I've listened to people telling me that L just needs a 'firmer hand'. I've learned to just shake these little nuggets of parenting advice off while at the same time imagining slapping the person in the face.
And there are always people who don't really know what to say so throw cliches at you. What doesn't kill you makes you stronger and What's for you won't go by you. The religious amongst us say things like "it's all part of Gods plan" and "God doesn't give you more than you can handle". These ones make me laugh the most as I don't believe in God so when people start throwing that at me it does get my back up. Was the Holocaust part of Gods plan? I know these people mean well and it's more because they don't know what to say but that's the thing - it's ok to not know what to say sometimes.
Probably the worst is the sympathy responses. People who tell me they're sorry etc. Here's a thought - don't be sorry! Of course I know people mean well and they just don't know what to say but there is no sympathy required unless there is a corpse present. Sorry is insulting. So if you are tempted to give someone in my position some pity, just don't. I doubt it would be well received. Give them understanding instead. And most of all just be a friend - to me and my son - and I promise I will do the same for you.
Sunday 12 January 2014
Not Fair
L has been back at nursery a week and seems to be having some issues regarding his taxi transport to and from nursery. L normally gets dropped off first on the way home, but before Christmas, the driver and escort started taking the other boy L shares the taxi with home first a couple of days a week and this was upsetting L so I got nursery involved and they spoke to the taxi and told them to change it back to L getting dropped off first but they didn't so me and S collected him on these days to save him from getting upset. I think the whole thing has confused L and he got upset several times last week and didn't want to go in the taxi at all. There have been lots of other niggles with the taxi since L started at nursery and over the weekend any mention of the taxi has got him upset so it looks like I might have to start taking him to and from nursery. I hate seeing my little man unhappy and this seems to be causing him a lot of anxiety and I will do what I can to make him more comfortable. It angers me so much that the taxi has this contract yet the people involved know nothing about autism, and how important it is to keep the children's routines the same. I've spoke to them several times about L and autism and I'm sure they think I'm exaggerating and actually making things up because L is very good at keeping quiet and appearing to be fine on the outside and then exploding once he is home and in his comfort zone. It's just a massive inconvenience we could all do without. And the reason they started dropping the other boy off first was because it was 'fairer' that way. Yeah right. Them trying to be fair has caused my son some major upset which I'm now having to try and fix. I have no idea what is going to happen now regarding it but I think I need to have another talk with nursery and if nothing changes we will just scrap the taxi altogether. I hope this week is a better one.
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