St Patricks Day
CRAZY JANE had been invited to join a local parade with her brownies club. I kind of was unsure as to whether CRAZY JANE would like it, you see she is a bit noise phobic and brass bands etc might just send her into overload. I asked her, she wanted to go but I wanted to spend the day with her and mr fabulous so gave her another option. We came to the conclusion that she would not go. I was relieved as DH was working and Mr fabulous would not go near a parade for love nor money.
So I decided to ask CRAZY JANE’s friend to join us swimming and then for lunch for the big day, she was delighted and said yes. They talked about swimming all week and CRAZY JANE was really looking forward to it. I could have picked a handful of kids to ask but I knew this child’s mum was not great emotionally, mentally and physically at present so taught I would do them both a favour.
So the big day arrived. I made pancakes for breakfast with a big bowl of tropical fruit salad, yummy, enjoyed by all. I managed to drop Lunatic john to my mums as out and out war had broken out between him and Mr fabulous. Lunatic john taught it would be great fun to scream his way through breakfast sending us all into a bit of a downward spiral mentally. So Lunatic john gone, Mr fabulous calming down, our nerves settling again.
I for some reason said to my self, im sure my membership to the pool (can’t do public pools with Mr fabulous, too crowded and noisy, rushed and all that crap) was coming to an end, I had better ring just to double check so that I could bring proper stuff to renew etc. Well thank god I rang, pool was closing at 12 for the day (it was then 11.50) Oh no, what the hell am I going to do now. I really want to spend St Patrick ’s Day with Crazy jane AND Mr fabulous, but with Mr fabulous’s condition we are so limited to what we can do.
I looked out at the grey skies and said; maybe we’ll make it to the park and escape rain. I called in the two girls, CRAZY JANE was delighted with this option, and the other girl was not. Oh god, how bad did I feel, the poor kids. I was forced to make a decision I did not want to make. I decided to leave Mr fabulous behind and bring the girls to the cinema and McDonalds. They where delighted with this. I was so sad as I again had to make the decision to leave Mr fabulous behind and not spoil his sisters day. I am being forced to make this decision a lot lately and its really killing me inside. We already can’t really function as a family unit with Mr fabulouss intolerance of his poor little brother so to accommodate Mr fabulous Lunatic john is shipped off a lot to my mums. The poor child spends more time away from us than with us as Mr fabulous simply cannot handle the noises he makes (to be honest we barely can either, its dreadful painful noises) so again we are completely divided as a family.
DH –working, Lunatic john – mums, Mr fabulous home with working dad and CRAZY JANE off with me.
NON FUNCTIONAL AS YOU CAN SEE
Just as we are ready to leave, the little girl we where bringing is all of a sudden out of no where sick, your kidding me. CRAZY JANE broke down, she sobbed and sobbed. Poor CRAZY JANE, and after all that the poor child could have went to her brownie parade. But no I chose to suggest a family day that in the end never took place. Sometimes Autism can really suck at times, as can Asperger’s.
We went to Another new county in the end and caught the start of their parade. A circus was there too so we got tickets for that and went to see the princess and the frog. It’s actually a lovely film about New Orleans and jazz music. We wanted to see Alice in Wonderland although I knew CRAZY JANE would crap herself in certain parts as I had already went to see it on Mothers Day with my mum and sister (my mum loves 3D films) The circus was fantastic I must say. I taught it would be crap but a filler for the day but we actually really enjoyed it. Poor CRAZY JANE was planking her self at the acrobats and tight rope walkers. She was freaking out in case they fell; I had to keep telling her that they would not fall, not to be worrying lol. But we really enjoyed the day and she had nothing but smiles in the end.
I had a chat with her on the way home and I said, I really missed Mr fabulous, Lunatic john and daddy today. Blank, nothing, not a single emotion. So I said, did you miss them? Why? She asked as if to say, but why would I. Im here having a great time isn’t that all that matters she implied. Ah yes Asperger’s and Autism can really suck. It never entered her head that they where not with us, that they where missing out on the fun, the celebration and togetherness. Yes Asperger’s sucks, well if your CRAZY JANE it doesn’t but if you’re her mum and you’re living my DISFUNCTIONAL life, it really does.
So not only did Autism slap me AGAIN in the face, Asperger’s did too. It’s getting so hard to get my head around just what our life is turning into. Im so loosing my bond with Lunatic john as he is always being handed over to my mum as Mr fabulous is too upset by him. CRAZY JANE is really showing more and more of her Asperger’s self the older she gets, Mr fabulous is just Mr fabulous, never changes, and that’s a big problem as it means he never progresses further, he’s just stuck where he’s at since a long time now. He has little tiny itsy bitsy progressions but nothing big, nothing major. I so want that next step to come, that next level but im just waiting and waiting.
I really want the day to come where Mr fabulous and Lunatic john can remain in each others company for a day, not just 1 hour. I want us to be a family and do family things. I hate my husband’s job, he never has time off, it’s really getting to me, never a bank holiday and we are never all 5 together at one time, always separated by circumstances we cannot control.
Life can be sooo crazy sometimes. Im glad CRAZY JANE had a great St Patricks day in the end, she deserved it, she’s been so good helping me with the business, the kids and I really do want to give credit where credit is due, she’s a fantastic kid but her Asperger’s can make her appear rude, selfish and distant and that’s not who she is, she’s the kindest, loving and giving child you could meet but this little thing inside of her can change that in a heart beat. I’d love to stamp all over her Asperger’s and kill it sometimes, it can be torture to live with and it’s hurtful and shocking at times. I hate it, there I said it, I hate it. Autism I can live with but I hate Asperger’s. I hate what it does to my daughter; I hate how it controls her and takes over her. I hate that she struggles so hard to fight it and keep it at a safe distance.
So yea, sometimes Autism and Asperger’s just really sucks
7 comments:
claireh said...
Ah maddy, im so sorry you had such a bumpy day.
It will get better hun, when alex was younger they hated each other so much, AJ fractured his skull. Now on a good day AJ asks him to play "catch you". I never thought id see the day!
Crazy jane is such a mature girl, she'l get there!
Huge hugs
xxx
March 18, 2010 3:54 PM
Anonymous said...
God you have it tough. I find it hard coping with just Eoin and his autism. You are juggling so much and sacrificing so much to try and keep everyone happy. You are a brill Mam to those three lucky kids. I hope things get easier and Mr fabulous will make some good progress
March 18, 2010 4:00 PM
Jen said...
It's not easy trying to juggle everything to try and keep everyone happy. If you had to pick one person who was most put out by the juggling who would it be? I would say you hun, but that might not be your perspective on it and I don't want to appear judgemental, because I am not judging you at all. Just remember to try your best to look after yourself too (pot, kettle etc!). Jen xxx
March 18, 2010 4:22 PM
Looking for Blue Scrazy jane said...
My heart goes out to you Maddy. I too feel torn in three sooo often, they all want to do different things - and when one is happy another is sad or in meltdown. But you just have to do the best you can, and as Jen said, please look after yourself, even if you are just doing it for your kids xxx
March 18, 2010 5:29 PM
Truf said...
It is really hard. But as coming from a phenotype family (i.e. nobody actually autistic until my boy was diagnosed, but plenty of traits) I can testify that with time your kids will become very strongly attached to each other, much more than "ordinary" kids. So hang on there, in couple of years they will be unseparable.
March 19, 2010 4:14 AM
Petunia said...
Hang in there hun, it will get better. As Lunatic john gets older he will get less "noisy" in the way that can press Mr fabulouss buttons. Yep aspergers and autism suck, but as Jen said, the person most affected by it all is you as you crave the bonds you dreamt for your kids. Crazy jane may not have missed the guys on your day out, but that doesn't mean that she loves them any the less. xxx
March 19, 2010 6:29 PM
jazzygal said...
Ah, C******, it really is hard at the moment isn't it. But like the others say, hopefully it will get better in time. Even if you get to the stage where you could pick a family activity that all would like and do it for just 10 minutes., once a week. Hopefully over time that would increase in duration??
You'll get there and you're not alone in having the family split. Hope things feel better for you soon :)) ((xx)) Jazzy
March 20, 2010 10:42 AM
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