You need a break ..... no ..... I need normality.

Respite is such a paradox. It's a weird thing that for one reason or another makes me feel blessed, annoyed and kind of embarrassed all at the same time.
Firstly I'll state the cold hard facts - we get 3 hours a week of the stuff. Three hours where Lachie is watched by our awesome respite lady. Other than that - other than school - we don't get anything.
No one watches our kids in our family, none of our friends. We have no baby sitter we call so we can go out to things - our Sunday night is it.


Secondly - we take Ellie to respite with us. When Ellie was born we took a break from respite. Firstly we thought it wasn't fair on Lachie if we all went out together and left him at home. To me that just seemed horrible. The first time we went it was because our provider called us up and kind of hasselled me, I think they had our booking, yet we weren't using it - anyhow we brought Ellie with us as I was feeding her etc. Our respite lady turned up, Lachie was obviously ecstatic that the boredom of his Sunday with me was over and the lady who gives him tons of attention was back. Anyhow, he was more than happy to have his time back, Ellie screamed for 3 hours and I was relieved to be back home at the end of it. We then had respite fortnightly. When Ellie got bigger it became pretty obvious that our original plan of leaving her at home too (in the fairness of Lachie having to stay at home) wasn't going to work. If the respite lady picked Ellie up, Lachie would hold her arm and push it back down as in "drop the kid lady - you are here for me!". Anyhow... we have just continued to take Ellie with us and most Sundays Lachie uses his device and asks for our respite lady. It is honestly one of the highlights of his week. He gets LOADS of attention, they do fun stuff, and her entire focus is on him.


For me though - it is really nice to go out for tea / for a walk etc - but sometimes after having the kids all weekend I just want them to go to bed and have some quiet time. I do enjoy my time with my partner, but it's not like we are kid-less and can just relax and spend some quality time - we pretty much chase Ellie around all night. Now I may sound like someone who should be more grateful - and yes I do enjoy my Sunday nights - but - you know what I would like ultimately - I would just like it if we could all go out for tea, Lachie included. Yes at times I need a break - probably more often than I admit - but really what I need is normality. I would just prefer to take my son to places and not have to explain that he can't talk all the time, to not be stared at when he acts hyper and out of control, for him to be able to occupy himself for 10 minutes inside our house,  and to have a relative that I can call on if occasionally I did need a break or we need to go out for something - etc etc. This is where things like respite really make me feel confused. The other thing as usual that annoys me is other peoples opinions of respite. People who haven't spent more than 5 minutes around my very active son. I actually have one lady at work who continually says stupid things like - do you still go out Sunday nights? so you all go out for tea and leave Lachie at home?? It's like she know the very thing to say that will feed my guilt and insecurity about my parental skills.


The reason why I am thinking about respite is that we had a pediatrician appointment today. Our paediatrican was asking about  respite and pushing for us to get more - like it's a pool of time we aren't taking advantage of. Doesn't she know these things are impossible to get?? Any parent of a child with special needs knows there is only one way to get any help. Demand it. Yell about it, cry and threaten a nervous breakdown and call your case worker / paediatrician / whoever! every ten minutes until you get it. If you aren't good at complaining or making a fuss, you better get used to the bare minimum of services.


Anyhow... I know with my heart of hearts that it's not just me who needs respite - the other person who surprisingly needs it is Lachie. Try as I might I can't find the enthusiasm and stamina that our lady finds each Sunday. Without her he wouldn't have had three hours of laughing last Sunday jumping on the trampoline while she sprayed him with a water gun and he wouldn't have had the little Christmas party where he rolled around in a pool of shaving cream all night before getting sprayed with the hose.
Still, I'm not seeking any more respite time - more of a 'break'. What is needed is behavioural and speech therapy for my son and more education on coping for me. Respite can also be a band aid. Maybe if we had access to therapies that helped him improve his communication and behaviour, and helped me deal with them, then we wouldn't need such a thing as respite.

On a sunny winter Sunday ...

When I was pregnant Lachie's dad and I used to refer to the little being inside me as the 'bug a lug' - 'Bugs' is what I have always called him since before he was born. It hasn't actually been until he started school that I seriously made an effort to call him Lachie and even now I generally call him 'Bugs' when I'm talking to him, but Lachie when I'm talking to other people about him.

My personal situation when I was pregnant sure wasn't ideal. There was a fair amount of stress and craziness going on. I was homeless for a while and I wasn't really talking to any of my family. Occasionally when I used to think about  the 'whys' of it all - my son having autism that is - I used to wonder and think about the stress that I was under and wonder if I had caused it.
I now say I 'would' think about it - as nowadays I don't think about the 'causes' of autism as much as I did when people started using that word around my child.
For a while I thought about it a lot. Sometimes now I think people pay too much attention to the 'why'. I know why people see it as so important - because if they can work out a 'why' then maybe then they can stop it from happening - and they think if they have a 'why' then they might then be able to work out a way to 'cure' it. I look at Bugs and the whys really don't matter anymore.
He is who he is. If I knew why, would he be any happier today? Would the people who come across him in our daily life come to understand him? If I knew why, I couldn't even explain it to him in a way he would understand. If someone offered me a 'cure' would I take it? What is so wrong with who he is anyway? I don't know the answer to 1000 questions about all of this, and that's why I've tried to stop asking them. Don't get me wrong - am I happy he has autism - no.   I want him to be able to make it through a little easier in this world. I want for things not to be so overwhelming at times for him. I wish he could tell me things that he can't - from why he is crying all of a sudden, to what he did that day at school. I wish I could tell him things that would reassure him. I can't imagine being a child and not being able to ask questions about life and the world. BUT - there is nothing wrong with who he is and I refuse to try and break him into being 'normal' and I refuse to make him 'act' normal all day everyday when he is just doing as we all do and is living his life the best he can with the experiences he is having.

He was born on a sunny Sunday in the middle of Winter and I don't think he really wanted to arrive. Although my waters had broken the day before and I was having some contractions - they didn't really move past what I now know as 1st stage labour pains - at least they didn't get past 1st stage until they hooked me up to a drip and basically told my body, and him, it was time. After 5 minutes on that drip I think I went from 1st stage pain to 3rd in about 5 minutes unfortunately though it still took hours. I felt pinned to the bed with pain and really didn't know what to do. He finally arrived, and all I said over and over is "he is so beautiful".

All things must pass .......

Well another year has gone .... it's been a year full of ups, downs and everything in between.

There a few things I hope / pray and resolve to do next year.

1.  Enjoy more time with my kids. I can spend time with them - but I want to enjoy my time with them. I think a huge part of that is working out what we can do together and secondly to relax and just go with the flow. I think I'm so used to many things turning to chaos quickly that I wait and try and head of the next disaster before it happens more than I just enjoy the moment.

2. For the Kids to enjoy health and happiness. I hope both of my kids enjoy good health and happiness this year. For Lachie I just hope he continues to come out of his shell a bit and to gain confidence in himself. I've notice that when he tries to speak to people other than us he really whispers and is so shy about speaking. I think he knows people have a lot of trouble understanding his 'babble' and I hope that this year he continues to learn and to just enjoy life and have fun. For Ellie, I hope that she continues to grow into a confident and clever little girl who has interest in everything! She has taught me so much and she has really given me a new perspective on Lachie.

3. Continue to study. I've started my Bachelor of Behavioural Science through Swinburne and gotten through the 1st term well only by studying when the kids are asleep, very proud of that.. so I hope to continue to work at that goal and not give in.

4. Make time for friends!!!! I find it really hard to make time for friends which is really making time for me. I ALWAYS feel better when I've spent time with a friend. It can be easy to postpone and put things off when life get's hard - but maybe that's when you need a friend most. Maybe that's just part of me, not really showing the 'reality' of my life to people.

5. Get fitter. I used to be a LOT fitter. I used to ride a bike all the time - it's just another 'non essential' that can be dropped when you have no time but I used to feel so much healthier and fitter.

So ... that's it really. Here comes another year.
I inhale before heading into the hard bits, and I look forward to the good bits!
All things must pass - even if we don't want them to - or can't wait for them to.