Sunday, May 10, 2015

trigger happy, and yea autism sucks

6 Trigger Happy more of my old blogs to continue telling the story of L’s autism journey

So you plod along nicely with Autism, teen and let’s not forget Brat toddler boy , its hard but you keep plodding along then PLOP, SLAP, THUMP, BANG, it slaps you right in the nut and you are knocked for six. Triggers yes, but somebody pull the trigger and send me to my resting place PLEASE.

Biting, lots and lots of biting, if it moved L bit it, and even if it didn’t move he bit it. So we finally get to the bottom of the biting episode, Mr fab’s way of saying I’m not ready for playschool thanks very much. Yes as soon as we took him out, biting stopped and I got my cool, happy, easy going baby boy back, yes L back in top form and doing great again. That simple, just didn’t want to go to play school, who knew lol so trigger found and all sorted.

To top that off I get a letter from Department Of Education to tell me that as L will be 4 in July that THEY feel his educational needs would be better met in a MAINSTREAM SCHOOL, yes you heard me right, a mainstream school, hmmmm he mangled half the kids in playschool and a teacher ot 2 and they want him to start school, hmmmm I don’t think so, well they were lucky I didn’t open that letter till 6PM as I’m only an hour away from their offices, and by god I would have let tem have it. I would have plopped L down on her desk and said REALLY, YOU THINK? How insulting and in your face was that letter, well em like how do you figure?? C***S!! then I would have went to financial and grabbed the one of the department of ed fuckers by the neck and shook her till I shook my tutors Home Tuition payment out of them, they never ever pay on time, ridiculous grrrrr what a useless, wasteful bunch of F*****s they all are.

On that note lol Mr fab actually went to the toilet in his special needs preschool, still will not sit on the loo at home as they have small loo there and he’s too nervous to sit up on a higher up loo but he did it, he did his first wee. Was so happy, I’m really hoping we can get him used to big loo now here at home

I woke at 7 one morning in a bit of a panic as L was not awake yet, you see he’s up at 6.30 eeeeeeing , oooooooing and aaaaaaaaaing out of him at the top of his lungs and banging the window at the cat every morning. I got that eeeerie feeling again, yes I opened the door to find my baby in his bed with that funny shaped mouth again, the milk bottle complexion, the creamy coloured lips and blank expression, but this time he was just coming through it so did not look dead and feel ice cold and stiff. He had had another seizure. But I wasn’t panicked or scared; he was sooo tired and sleepy that I knew he was ok so I let him sleep. I had the monitor plugged in down stairs and I checked him regularly. I refused to go to the hospital as they could do no more than what I could do and he was able to be in his own bed, with his teddies, his own blankets and pillow and with no added noise than usual. He was happier that way. It took till 2 pm and a bit of gentle persuasion for him to get out of bed, but up he got and ate a big bowl of his favourite food, chicken noodles and he hasn’t stopped eating and giving out since, he’s back to his usual self. I reckon ill be too stressed to sleep tonight thou as ill be listening out and watching him like a hawk but I don’t care.

R was having testes done for bits and pieces, K the same; my own health was a bit messed up as well. My thyroid packed in a good bit and I’ve been put on a new higher dose of eltroxin. I was so tired and just kept putting on weight and not shifting it no matter how little I ate. I looked like death walking, no matter how much I washed my hair it looked greasy. My skin looks dreadful and dehydrated. Ah I’m a wreck, yuck but I’m on the right track now and getting better. I got my hair chopped and layered again like I used to have and got my blond and copper highlights back in, I look so much healthier now with a lighter hair colour.  G was shattered and his skin in bits from stress and allergies, how are we surviving is beyond me.

Still fighting dept of ed to leave L in his resource centre instead of going to school, a loosing battle too it was becoming. 

That oul dog called depression

Me thinks Mr fab is only processing at night the fun he has that day.  Some nights he does be in his room laughing, jumping around, eeeeing and ahhhing till all the ungodly hours. This is most nights, when will I ever get a full night’s sleep. 

Sometimes you get so tired and down your mind wanders, the more tired you are the darker the wander. You start feeling like a failure, especially when you keep loosing battles after really long fights, you just want the fighting the stop, you want to feel normal and do the things normal families do, you want life to be less stressful, just easy flowing for once but it never does.  The less sleep you get the more thinking this shite you do.  You see other families out having fun, on holidays in the sun, siblings playing together, esp. face book, face book can be a killer for that, you sometime feel jealous, you crave what you know you can never have, you look on your own life like its crap, you feel even more abnormal, you start dwelling on it.  It takes a lot to remind your self that life may not be perfect but its by no means crap, you have to fight with yourself to get your positivity back, your feeling of loving life and what it gave you again. It’s very very hard, and you fight with yourself to get that feeling back because your ashamed of yourself for feeling negative. Your worn out trying to balance 3 very different children of very different age groups who are of very different abilities,  Days out are a nightmare as you cant please all 3 kids and it makes ya not want to go out in first place.  It’s just a depressing life at times and you really have to try hard to rise above it all and it makes you physically ill fighting against it all the time. 

St Patricks Day for example

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 L so gave her another option. We came to the conclusion that she would not go. I was relieved as G was working and L would not go near a parade for love nor money.

So I decided to ask k’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 K was really looking forward to it. I could have picked a handful of kids to ask but I chose this one.

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 L. 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 R gone, L calming down, our nerves settling again.

I for some reason said to my self, I’m sure my membership to the pool (can’t do public pools with L, 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 K AND L, but with L’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, k 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 L 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 L 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 fabs intolerance of his poor little brother so to accommodate Mr fab Lunatic john is shipped off a lot to my mums. The poor child spends more time away from us than with us as L 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.

G –working, Lunatic john – mums, L home with working dad and CRAZY JANE off with me.


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. K broke down, she sobbed and sobbed.  Poor K, 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.

We went to Another  town 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. The circus was fantastic I must say. I taught it would be crap but filler for the day but we actually really enjoyed it. Poor K 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 L, R 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. I’m here having a great time isn’t that all that matters she implied. Ah yes 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. I was sad as when will we ever be a family unit like everyone else.  Is autism so bad for her that she can’t bare to be around it, that she actually preferred them not being with us?  I just felt very sad about it.

It’s getting so hard to get my head around just what our life is turning into. I’m so loosing my bond with Lunatic john as he is always being handed over to my mum as L is too upset by him. K is really showing more and more of her selfish pre teen  self the older she gets, L 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 I’m just waiting and waiting.

I really want the day to come where L and R 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 K had a great St Patricks day in the end, she deserved it, she’s been so good helping me with stuff, the kids and I really do want to give credit where credit is due, she’s a fantastic kid but her pre teen hood 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 preteendrome 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 pre  teenager syndrome. 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 pre teens can just really suck

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