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.