Part 31 something old, something new, but feeling very blue

WHAM, BAM, WHAM

What?

Wham, Bam, smack, slap

WTF was that, YOUR LIFE that’s what.

Yep that sums it up, could almost end this blog there really.

What is wrong with me these days, something is just not right at the moment.  Im feeling overwhelmed, tired, grumpy, defeated and just worn out.

I should be on top of the moon, and hard to believe but im actually quite a positive person who just jumps to it and gets the job done, but at the moment, im feeling like im failing the most simple every day tasks.

Im under immense pressure and I have so many balls in the air that im dropping them one by one.  I really hope I start catching them soon as knowing my luck ill trip on one and do myself an injury lol.

I think im just coming to terms now with being so sick a while back, Mr Fabulous starting school so sudden, which was really just so quick that I don’t think I’ve even processed it yet and still fighting the Hole Scratchers Elite is exhausting, but im winning the fuckers so really I should be celebrating that fact.

The Mill is nearly finished, just putting the finishing touches to the retail part, the stock starting to come in so its looking great, but its been such hard work and I feel I let both Aine and Rachel down as I had been so sick when we where trying to get it all sorted.  Normally id work even if my head was hanging off but I just couldn’t function, I had never felt so tired and unwell in my life.  I also really did get a shock with the whole Mr fabulous thing, I mean I was expecting home tuition and plain sailing and I think I taught his tutor Fid would be with him for ever, I never expected to loose her or have to loose her, stupid I know but Mr Fab loved her, I loved her, she was such a great support to us and just such a lovely person.  She has a new job now and I know she will change the life of the little boy she’s going to work with; they are such a lucky family to have her with them.  Mr Fab is doing really well in school, I couldn’t be happier for him; he had no transition problems, no melt downs, nothing, just big smiles and working the charm on all his teachers, as Mr Fab does best.

I got great news regarding Crazy Jane, we after 2 and half years and 4 declined letters and 5 appeals, we have won our fight for entitlement to DCA.  Can you believe it, and I actually only sent the last letter and appeal in just to stick it to them, I was so nasty and in your face in that letter LOL and I really said how I felt in it.  I even told them id bring a child the same age as crazy with me, plonk them both in his office and play a game of spot the difference between a typical child and an Aspergers child, I was waiting for a “we are suing you for harassment letter” not a reversed decision and appeal approved letter.  I was in shock; I will frame that last letter LOL.  And thanks to my wonderful solicitor we have also been sent a letter considering  review of  service by the Hole Scratchers Elite, WOOHOO SO ITS ALL LOOKING REALLY GOOD.

So what could be wrong with me, fuck knows really, im just feeling really blue.  Im not depressed by any means but just low in myself.  I suppose Lunatic john is a main source to my problems.  The 21 months of fucked up sleep finally getting in on me lol, the fact that hyperactivity has already been confirmed at this early age, the fact that yes ill be fighting for him as well in few years, does it ever end really, what did I do in my former life ill never know to deserve this.  The financial pressure of 3 kids with very different needs, childcare costs, petrol, bills and all that jazz.  That cheque from DCA has never been more needed and I am escaping the madness with 2 long weekend holidays with a friend, no kids and a family trip to add to it.  I deserve it after all this fighting and abuse from Dr George (oh the day when I get to announce his real name, cant wait) I still haven’t heard from the social work department, I think they know them selves hes just a dick as ive heard since hes famous for referring innocent families there and they are just as sick of him as we are.  So that’s comforting.

Me and DH are two people and we are struggling.  We are exhausted mentally and physically.  Someone once said to me, how can you work with all you have going on, truth, it’s my escape, it’s my rest from it all, my break from it all, it’s my refuge from it all.  If I was an outsider looking in at my life, id have us all institutionalised and on Prozac drips in a padded cell, we are a psychologists dream, we are our own psychological experiment.  We are a nut house.  My working day may end at 5 but my living hell continues on where the working day left off lol.  My kids are the best kids and for all that’s going on with them they make Autism look so damn easy but if I fall behind, they do to, if im tired and cranky, they suffer, if im unwell, they get neglected, if im not home they have a substitute who loves them just as much as we do but it means they come flooding to me for me time as soon as I get home.  I miss being a stay at home mom but I miss my sanity even more, so working really is my best medicine.  Just brings with it added stress, tiredness and out and out madness.

I hope I get to a full nights sleep again some day, I hope I wont be downing double vodka’s praying to get so shit faced that I forget my own name for a while, I pray to god ill be me again some day, I vaguely remember me, I think there was a time in my life where I had no kids, I did not live in an autism bubble, and I was fun and alive, not half dead and grumpy.  My children are my world, but do they have to be my whole life as well?  Surely im allowed having some life of my own that does not revolve around them, this for me is the Mill, and it’s just all about me, and the future im building for them. 

 I don't eben know if this blog made sense but i do know its home im feeling right now

part 30 Decisions decisions scary decisions

What a few weeks it’s been. It’s been like a whirlwind. My head had just been spinning and spinning. All the crazy jane stuff aside, I now faced a new problem.

I was one of the many parents caught in the department’s new circular, and it was quite a sneaky circular too, very much on the down low, so much so that even organisations hadn’t been made aware till last minute.

I filled out the HT forms, sent them off expecting the usual department hassle they like to give you but this, this was mental. One night I got a phone call from the head of the organisation, form can’t be signed by the seno, as now mr fabulous is 4 so his options are special needs school, asd unit etc. WHAT I was speechless; I honestly did not know what to say as the news came after a string of other bad news blows. The organisation where just as baffled as me, surely they cannot expect a barely turned 4 years of age non verbal severe autistic child to start school, I just couldn’t get my head around it all.

The head of the organisation said leave this to me, il get back to you tomorrow, she too was shocked at how my child was going to be thrown into the deep end. I was too numb and just overwhelmed by bad news to really think straight. I had also been very unwell as I somehow bumped my thyroid into over active which played havoc on all my internal organs causing chronic fatigue and just reducing me to a coma type sleep at stupid hours of the day. I was in pain as the pressure was sore and I had a constant head ache from my blood pressure shooting too high to too low and my blood sugar kept dropping rapidly. I had never experienced anything quite like it, it was weird, I had to have bloods, tests and x rays all round me. I almost crashed my car one day from nearly collapsing behind the wheel.

I was so lucky to have help from my good friend Bruno, Mr Fabulous’s carer. He drove me where I needed to go and took care of the kids while I was too tired to function. I had to ring Mr Fabulous’s tutor to explain all to her which was horrible as she was on holidays and I was devastated at the tops of her not being with him again or moving forward with him as was part of our bigger plan. I taught id get HT till he was 5 and a half at the least and that he’d then be ready to mainstream slowly with his tutor as his sna which I had also arranged with the school I had in mind for him. I had it all so planned and taught out, that’s what I do, its how I cope, this threw me for 6.

We fought for HT hours and if not granted a place in an excellent ASD unit but it was 45 min drive from my house, im some woman but im not super woman, there was no way id manage that with my crazy life. We needed transport which department provide. Another blow, no transport as special needs school right beside me, HELL NO he isn’t going there, it’s a great place just not right now for Mr Fab. Ok letters and documentation as to why HT better option and why he cant go to local school. I got it all done and seno came to my house, the one day I needed my two boys to be their usual selves, they were best behaved. Ok Mr Fab took offence to the head of the organisation leaving her keys and cardigan on my mantle piece, they got flung, he took offence to so many people in his sitting room and became quite vocal sounding and proceeded to bang on the window continuously as if to say, there’s your car, now hop out to it.

The more I taught about the ASD unit the more it started to make sense. They are fantastic and the services are second to none. They have a huge reputation and they get results. Maybe I should let him go to this unit, maybe its just the kick up the arse he needs. What if it’s not tho, would he regress on me, he had started to since leaving his resource centre. I can’t risk that, home life is bad enough but could I handle Mr Fab to be even more of a challenge than he is? Oh god, everything felt right tho, my self and DH where constantly trying to figure things out. We’d have to move if no transport provided, ok let’s do it. Then something happened and I felt totally different, nope he can’t I said. DH said he was sure the ASD unit was the way to go. I can’t move tho, I just can’t, and what if regression starts, I can’t handle that especially as our circumstances will change rapidly in December, my DH shall have to work in Dublin and not from home anymore. I will be on my own 5 days’s a week with three very dependant children. I just can’t move or risk it.

More news, transport of some kind would be granted as local school has no place to suit him, great, also HT was granted and ASD granted, pick one. Oh god, you’re just kidding me, I won both fights and still had to make this horrible life changing decision. This decision did not just affect Mr Fab’s life but ours too. I had to make the right decision for him that, was priority. I spoke with his amazing tutor, she also agreed with DH, ASD unit best option, if I didn’t take the place this year it was not an option next year as place already filled for next year, GULP, I rang petunia, what do I do, advice in favour of ASD unit also, this was it, decision made, ASD unit it is.

I went to see the school a few times and timed the journey, ITS long 45mins long. I got into see it on the 31st of August and Mr Fab was welcome to start September 1st.

Just like that, no issues, no we’ll get back to you, nothing just welcome aboard, Im a wonderful principle, I’ll accommodate you and your child anyway I can, its all about what works best for him, you and your family, GULP, I was just shocked. Transport forms filled out, he even invited Crazy Jane to their July prov 2011 and told her she could come to his school if she wanted, to which Crazy Jane gave great consideration and is still considering. Ah they have a special shared hobby herself and the principle, horses and ponies. They clicked right from the get go. He was showing her his connemara ponies on his phone, she was showing him snowy on my phone, they were discussing breeds, and all sorts. He brings his ponies to the summer camp you see, Crazy jane in heaven.

Mr fab is just in the best place ever. He loves the school, teachers, the big open wide spaced classroom, the sensory room, gross motor room, the playground they have is fantastic and its always available to them. Mr Fab needs to get up and run it off every couple of mins and he has the freedome to do that, he also loves to work and he has his own partition’d off table to work one to one. I couldn’t be happier for him as the smile on his face says it all. I will miss Fid his tutor but we are keeping in touch so that’s great. She even went in this week to help them settle him in. Mr Fab will remain with the organisation for life due to his IQ score and ID outcome of his cognitive assessment which will be done very soon, that’s a major relief to me as they are a godsend and without them I’d be just lost, their support and services are second to none and their always there for me and Mr Fab, they have never let me down the entire time we have been with them. I am forever grateful to them.

Other news is just the usual crap. Lunatic John has been diagnosed with hyperactivity at the age of 20 month’s, nothing I was’nt expecting, under observation every 4 months still, he gained a massive (sarcasm) kilo and a half in 4 months LOL. That’s good going for him especially since he had yet another antibiotic and trots from it.

Crazy jane is doing the best in a long time. Freedom has definitely been the best move forward with her. She’s loving being able to go to the next estate to her friend and the local shops and pool. Im really impressed with her maturity level. She’s such a careful and law abiding child, she doesn’t get it from me and that’s for sure. I know I can trust her with this new found freedom so that’s a huge help, plus the fact that she gives me a late night chat about every SINGLE thing she did, nothing left out and I mean nothing. She’s growing too fast, she only 10 but she looks 14 sometimes, especially if she has make up on which is her new passion. She’s been into clothes for a good while now. At last we have removed her from tracksuits and jeans, she wears skirts, dresses, and pretty shoes lol, not just uggs and tracky’s. She really is a stunner of a child and she has the best heart you could ever want your child to have.

We have been back and forward to the Hole Scratching Elite with letters, they actually have the neck to be snotty in their letter’s their sending back, they shit themselves recently when a very official letter went out to them, let’s just say they copped it was a solicitor’s letter and not just a letter from me, well their attitude changed rapid, oh Mrs Maddy, we are so happy to offer your daughter a review with aim to new assessment and review of services. They make me sick, so here’s hoping something good happens, probably get another dick head saying no she has traits but not actual condition blab la but at least shell get services with it of some kind, we will be reviewed in another county with new psych. We have also sent to ombudsman etc so maybe ever a benefit or two if im lucky, would be nice, especially now as im paying out all round me for private services.

HERES HOPEING
But it’s looking good, long may it last

PS if you where a follower of the blog when at it’s last home could you click follow again, its looking lonely LOL