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