Taking on too much at once: The College Edition.

college

 

It’s official. I’ve been questioning it the last month or so, I’m only a few months in thankfully. You know the time isn’t right when you feel that way already. Things are too stressful at home. I have a home in disrepair, hoping to move house soon. I’m not comfortable with myself, I’m trying to lose weight. I have two children with significant individual needs one whom is severely distressed often. So many appointments and reviews to attend. As well as the general everyday upkeep of a house. Making all the financial decisions. I do it all on my own.  I’m deliberately topping it up with three hours commute a day, three days a week and degree level coursework. What on earth was I thinking? It’s beyond me. I’m almost at the end of block one and I am already feeling the stress.

I think I need to accept that I will not be likely to get a degree anytime soon. I mean I may venture there in the future.. subject to many moons aligning and the time being right. I’m hopeful that leaving early will mean I may be able to get a resit year. If I’m being absolutely honest, I’m OK with not getting a degree. I think the degree was the end point really, and I was beginning to wonder what the point in having a degree was when realistically I can’t put it into use. I have no intentions of going into a full time position, most teaching positions are full time. That was originally the reason I wanted one, but the idea of being employed part time isn’t realistic..plus there’s all the out of school hour work teachers are expected to do. Most other things I can do successfully from home, and I can do them without a piece of paper telling me I can. All in a stress free, work at my own pace environment. I can dip in and out of ventures whenever I please. I think that’s the way it’s going to be.

And I’m OK with it. Not over the moon, not upset, perhaps a little disheartened that Im not doing what I’d set out to. But I know what’s best for us.

That time I threatened to place my son into care.

That’s right, the hard faced “I’m coping fine” mother threatened to place my son into care. It’s been so long since my last update. Clearly  I suck at this regular blogging malarky. I am not going to deny that fact. However things are a clearing up a bit now. I feel like I can update even though we’re very much in limbo waiting on things happening now.

The good

The good news – Leon has been cleared of having further neurology issues. We’d thought the eye rolling might have been related to epilepsy but we’ve now seen two neurologists who are both saying it’s absolutely not that.

 

The Bad

 

The not so good news. A large proverbial pile of shit hit the fan about 2 months ago. I got to breaking point and threatened social services that I would consider placing Leon in their care unless either CAMHS (Child and Adolescent mental health service) assessed him pronto or support from them was provided. To let you understand, Leon up until around August of last year was a very calm content boy happy to stim in his soft play area or in the garden, and very rarely a demanding child. Of course he had meltdowns but nothing like he’s been having recently. He was referred to CAMHS in November of last year (2016) He was “Urgently” referred actually.. by the Educational Psychologist, the head teacher, his own teacher and his pediatrician. It was an urgent referral as I am a single parent, he shares a room with his brother. At the point of referral he was hitting, kicking, headbutting and biting everyone (even strangers, people in school etc) randomly and unpredictably. He was hurting himself, battering his legs off bars and stairs and walls, his own hands and arms were covered in bite marks and bruises he’d given himself. He wasn’t sleeping. We were all absolutely shattered physically and emotionally. His brother was often in danger of his outbreaks as they share a room. In my mind, I expected urgent referral to be 2-3 months, absolute worst case scenario.. How wrong was I?! Only about 7 months out. Thats right his referral in November last year wasn’t looked at until August – 10 months down the line, even then they never actually met Leon until October. And I’m absolutely sure my threat to place him into care had a huge part to play in them eventually coming out. It’s absolutely disgusting that in this day and age in the NHS vulnerable children are being left this long with severe mental health issues. We’re getting somewhere though.. I’ll mention more in a bit.

 

The Ugly

 

Second complaint has been with the council.. firstly their school transport service. The transport assistants are absolutely lovely and I don’t fault them at all. However there had been two incidents with Leon and obviously they need to report all incidents. The first involved Leon hitting and kicking the drivers console in the car whilst the car was moving. The second involved him hitting a child and then hitting the escort in one of his meltdowns. I got a letter from the council stating I was to sit Leon down and discuss with him that his behaviour has been unacceptable and that he cannot behave that way in the future. Now I absolutely understand it is unacceptable.. however Leon is a severely autistic non verbal child with no understanding whatsoever. We called the council to let them know about Leon and his disability incase it was a generic letter that was issued. The lady (Very polite term for the absolute scrotum faced woman that covers the school transport organisation) informed us she’d called and spoke to the school beforehand and was aware of Leons difficulties, and still expected the sit down. So we got off the phone and phoned the school. School have assured us his transport will not be affected and they’ll most likely arrange a different escort for Leon (previously he has had the SFLA’s “Support for Learning Assistant”) The current escort has informed me she thinks she’s switching Taxi runs so it sounds likely that this might be the case. That was the first issue.

 

The second issue I have with the council is with the housing department. Apparently my local housing department don’t see autism as a medical issue. I have asked them to clarify this in writing but to no avail! Currently Max with ADHD (Loud, enjoys TV, games, music)  and Leon with severe autism (enjoys quiet, dark rooms, sensory lighting) are both sharing their room.  All the specialists involved agree they need to be separated. Max for his own safety as he is currently in danger from his own brother. And Leon so he has a quiet calm room to retreat to as right now there just isn’t one. I also want to apply for funding for a safe space structure to be placed in Leon’s room. Right now with them sharing that is just not possible.  We have handed in copies of written letters from both childrens psychologists, the paediatrician and both schools confirming that they need the extra room as a medical priority. The council have agreed to put me on Band 2 without medical priority. It is high enough up the list however they aim to fill the house to the best need. Therefore, if anyone with more than 3 people in the house apply they will get priority. Practically making my chances non existent! I have considered going private, but I just feel I couldn’t deal with being told I need to leave.  I’m also worried about when Leon gets older incase he causes any damage. At least the council will be somewhat understanding to his disability. So now I need to gather all my evidence, and firstly appeal the band decision – failing that I’ll be contacting Local MSPs.

Aaaaaaaand breath..  Up to now He’s been seen by CAMHS 3 times. The first two times he really was a little sh#%. Done all the worst behaviours in front of her very eyes. The last time she seen him in CAMHS office and he was good as gold. She really couldn’t believe it was the same boy. They agree he needs medication as his outbursts are inconsistent, sporadic and unpredictable. She came to our home and his school to observe him. CAMHS want to rule out ADHD firstly. I don’t think it is ADHD for a split second as all his behaviours are sensory seeking, but he’s going on a trial for treatment to rule it out. And if/when the trial doesn’t work he’ll be put on Risperidone. I have never heard of this, but apparently it’s used to treat schizophrenia and symptoms of bipolar disorder as well as extreme irritability in Autism. Sometimes we actually questioned if Leon might have Bipolar disorder – as he gets extreme highs and extreme lows. I mentioned before about his manic laughter at times. He can be sitting daydreaming, staring into the distance and he’ll start manically laughing. It’s adorable but slightly unsettling at the same time.. and it can go on for a long time. But equally the opposite happens. Sitting smiling, looking like he’s enjoying whatever he’s doing and then a fuse blows and he’s trying to kick out or bite you. That’s where we are on the medication front. He’s been given some support from social work. He has currently been awarded every 2nd or 3rd Saturday (I think) from 10am – 4pm in a secure play unit. This is ideal for us. I feel horrible for admitting this but I feel so much mummy guilt that Max misses out on loads of things because his brother just will not manage them. I also feel guilty for feeling guilty, as it’s most definitely not Leon’s fault. Being an ASN mummy has so many difficult compromises that we make, but it’s a difficult pill to swallow when you realise your other children are making compromises too.

So in short, this is where we are right now. We’re trialing medication. The school are incredibly supportive. We’re preparing to fight the council to get actual priority for an extra room. And I should be getting every 2nd or 3rd Saturday to do something out of the ordinary with Max, whilst Leon gets to play in a special unit for a few hours. Far from sorted of course, but a much more supported place than we were before, and if I’m absolutely honest.. I’d threaten to all over again to get him what he needs as that’s what we have to resort to under this government unfortunately and time’s are unlikely to change anytime soon.

If you’d like to know more about autism – Check out this link

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Spectrum Sunday

A change is coming!

Bit of a long one this one. I’ve not posted in a while.. it’s getting a bad habit this not posting malarky. We’ve still been having a tough time with Leon.. as you know Leon is autistic. He has really good days, days where he is loving and playful and such a pleasure to be around, but they’re accompanied with really bad days. Some days they intertwine, he can go from laughing maniacally and being over the top happy, to extremely angry and trying to bite – and unlike usual there are no triggers..Normally with Leon you can guess the issue, he might be annoyed if the TV is too loud, or annoyed if he wants to go outside, hungry.. and it’s fixable or he’s often at least able to be comforted out of the meltdown.. Meltdowns normally last anything from 5-30 minutes the difference now is his meltdowns last often 3-4 hours at a time and it is bloody exhausting. Exhausting and scary. He can be intent on biting, and when a 9 year old is going to use all his strength to try and bite you he’ll get there eventually.. I’ve had my face bitten. We’ve nicknamed him Gnasher for the time being. (If I don’t laugh, I’ll cry) Of course the child mental health service locally who are supposed to be providing support for his behaviour are as useful as a chocolate teapot. We initially seen them in May for a first appointment – his next isn’t until August and he’s not invited, parents only. When you consider that he was referred as an “emergency” in October/November.. it’s July and we’re no further forward I really don’t hold much hope of getting anything useful at all from them.

Just before the Summer holidays we seen his paediatrician who I actually get on really well with.. she does everything she can for him and unfortunately I’ve realised it’s a rarity in the NHS! I kept telling her how bad Leons days were sometimes getting but as expected, the days she’d see him he’d be the best behaved kid ever! At least that was up until the last visit.. this visit started with me and her in a small room at his school, and I was letting her know about his behaviour. Of course, along came the “that doesn’t sound like Leon at all, sometimes the school exaggerate these things, there must be an underlying cause, maybe he has an infection” from the doctor which of course all are completely rational, however.. I do know my son, and bloody well at that! Following that though, almost as if on cue I could hear him shouting and screaming from his classroom, so up we went. And in short she witnessed his behaviour. She witnessed his behaviour towards me.

Now considering Leon is normally a very loving boy, she seemed shocked. I told her how he does it at home his brother is often bearing the brunt of it due to sharing a room etc. His brother is also in a special school unit, and both units have been working together in order to support the boys, as Max is a fully able 9 year old but he seems to think its “okay” for his brother to bite him because his brother doesn’t know better.. which is far from ideal. But yeah moving forward.. the doctor wanted me to consider admitting Leon into hospital – my jaw almost hit the floor! He’d be in a secure unit and monitored to determine the issue, I wouldn’t be able to stay with him. I can’t imagine how they think I’d ever let that happen but it was suggested that should I request an emergency referral they’d take him in. The Doctor leading the ward is the doctor who originally diagnosed Leon. I can’t imagine how they plan on keeping him in a bed or in a ward as he’d be a danger to himself and everyone around him. Completely refused it.  The last option was medicating Leon to calm him down, so anti psychosis medication – even though he hasn’t actually been assessed. I was a bit annoyed with these options so we’re still in Limbo. He’s been re-referred to a neurologist. His father had adulthood epilepsy had fits in clusters often, it seems that before his meltdowns his eyes roll all the time, but its not your typical “annoyed child” eye roll, it looks like a tic. He clicks his tongue all the time and does the usual fidgeting but this all stops when the eye rolling is happening and it looks the same as his dad did just before having fits. Almost like he’s zoning out. I’m still not 100% convinced it’s not connected. He went for an EEG which is basically him sitting on a seat with electrodes attached to his head, and they monitor the brain waves (I think..) however when they last done it he was fine, there were practically no incidents when he was being monitored so I don’t feel as though it’s a good reading or representative of how he is when he has these episodes, always the case though isn’t it!

Anyway.. to the point in the post. It’s always been Max and Leon, they shared a cot as babies even though they had their own they’d climb out and into each others. They shared a feeding bowl as toddlers, pram, baths, a room, their birthday parties, beds. They each have their own loft bed and still share a bed on good days. But I’ve decided it’s time to split them up, it’s just not working now. I’m going to be looking for a suitable 3 bedroom home for us. Leon needs a quiet space, with his sensory equipment and things around him. Max is a typical boy, wired to the moon, loves his video games, action figures and youtube and is fairly loud. He needs space without fear that his brother is going to lash out at him. It’s like a storm in a teacup them both sharing a room. They just turned 9 (on the 14th) and Leon is still incontinent.. so long term they will need separate rooms. I hate to leave the house we’re in as I love it, I love the garden it’s perfect for the dogs and us, the neighbours are quiet enough, its 2 minutes from my mums house but I’d regret not doing it now if I leave it any longer. I’ve been subconsciously avoiding doing “expensive” things in this house for a while.. like tiling floors or putting decking in the garden etc as it’s been in the back of my head. Wondering how long it’d last but now it’s set in stone. I’m hoping I’ll have a move soon, ideally before Christmas. It’s no secret I don’t own my home it’s rented, thankfully via a housing association so I know I can do what I want to it decoration wise without the threat of being told to leave hanging over me.. I’ve lived here 8 years now! I need the doctor to write me a letter confirming it’ll benefit the boys health, and I’m hopeful that should speed up the process. We’re not in a hugely overpopulated area so a 3 bedroom one shouldn’t be too difficult to swap to. So yeah, that’s the next thing on the agenda – a house move!  Exciting, yet scary times.

It’s Alive!

My blog, that is. I’ve not blogged in almost two months. To be fair we’ve been really busy, I’ve had my hands full with Leon for a while. He got super aggressive for a few months – it comes and goes in bouts (it’s slowly creeping back!) I’ve been hit, punched, slapped, head-butted, bit, kneed, kicked – you name it! So has his brother Max. It’s kind of manageable.. just now, but I’m definitely worried about him getting older, bigger and stronger. We’ve had him for an EEG and blood tests to see whatever sets him off might be epilepsy related (his dad had adulthood epilepsy.) And we’ve been referred to CAMHS (child and adult mental health service) to try and get to the bottom of it. The trouble with Autism (at least in Leon – the spectrum is huge so does not apply to every autistic person) but with Leon there’s no visible trigger. Every specialist I speak to ensures me that there must be a trigger, that we just can’t see it. I’ve seen this child everyday of his almost 9 years on this earth and he can go from smiling, and laughing (almost psychotically) to screaming and having a meltdown. Nothing will have changed. He’s been to the emergency dentist for check ups, we’ve asked about the possibility of migraines, he’s had over crowded teeth removed in case it was that. It’s a long road but we’ll see where it goes.

I also decided to return to college. A while ago, I decided against returning to college, I had felt like Leon needed me more than I needed college. I’d originally decided that I’d be best at home, looking after the kids and that the reality was I’d be unable to work full time caring for Leon so there was very little point in me going. I’d convinced myself I’d be able to learn at home. Trouble is after two years off,  I’ve gained nout but a clean, organised house, a crabbit’er child and I’ve practically lost my sanity somewhere along that road. I don’t make time for practicing art like I do when I’m in college.. I have virtually no social life because I’m an absolute hermit and it’s REALLY difficult to find places to go that Leon likes (as naturally both Max and Leon come with me 99% of the time). College is mostly when the kids are at school.. Give or take an hour or so. So I’ve decided to return to college. I’m doing what I always loved, an art course. I’ve intentions to complete my degree then get a teaching qualification and seeing where I go from there, but obviously any intentions are subject to change..(ha) But yeah, I need to get out the house and do shit that doesn’t involve damage limitations or baby wipes. So in the last two months, I’ve applied, made my portfolio, had my interview and got a place! So.. yey!

 

I tried the kids at after school clubs.. Finding one for them both is a pain. Just last week I had to leave one in tears as Leon was head-butting my face as he didn’t want to be there, luckily one of the other mums kept an eye on Max so he could stay, I took Leon to my mums and went back for Max. I feel like Max misses out on a lot because there’s just very little Leon will tolerate. I hate asking my parents to look after Leon as I don’t want them thinking I’m taking the mick..so I’m between a rock and a hard place there.

 

Also started slimming world, been on it two months, I’m the lowest I’ve been on a diet, still down just shy of 30 lbs since October, but I’ve not been following it and yoyo’d the last two months so not lost much at all. Been getting my head back in the game, as well as reorganising and juggling all the above shit.

 

So that kinda covers the last few months. Going forward, I’m wanting to get my head down and blog more. I want to practice art more, seeing as I’ll be back in full time college come September. And losing weight’s still top of my list so I’ll probably blog about that. All the whilst juggling one mardy bum of a child, and trying to ensure the others not ignored. So fingers crossed!

x

Hopes & Wishes tag: 2017

We all know I’m a bit OCD about planning, so this hopes & wishes tag was right up my street. I was tagged by the lovely Sarah who blogs over @ Whimsical Mumblings. Thanks Sarah!

Personal Wishes

 

  • Get healthier: Lose weight / take vitamins / drink more water the whole shebang.
  • To up my self care game: Hair trims / nail care / moisturising – I’m a bit of a slacker in all the above.
  • Be more social: I am an absolute hermit, less so lately actually but I’d like to continue with not being a hermit.
  • Take time to not be mum: I am mum 24/7, I don’t get breaks. And the rare occasion I do, I am decorating the house, or cleaning the house, or doing some sort of thing that I don’t actually enjoy. I want to take time to be ‘Terri’ again. I almost feel selfish when my world doesn’t revolve around my two kiddywinkles 100% of the time. (more to follow..)
  • Be more efficient: I am quite pernickity about housework- I do it, eventually. But I have a habit of doing it all in one go, it would be much easier if I spent some time doing little things each day than doing a weeks worth of laundry at once, or a days worth of dishes at once. 5 x 5 minute jobs throughout the day are more appealing than 25 minutes of cleaning.

 

Blog Wishes

 

  • Blog focus: I want to streamline my blog focus to suit what’s going on in my life – currently that’s my weightloss. So I plan to have a few more posts focussing on that.
  • Instagram: I want to utilise my instagram and use it to attract people to my blog – probably will start posting slimming world meals on there too, cause I like to pretend I can cook sometimes.
  • Personal posts: I seem to not post my rambly / ranty , ‘what I’ve done this week’ posts as often and I’d like to start doing that again.
  • Take part in linkies: I’m still a bit confused on how linkies work – but I’m going to look into them soon and hopefully by the end of the year I’ll have taken part in a few.
  • DA: Domain Authority. I want to increase my domain authority, I don’t normally focus all that well on stats and am happy rambling away 90% of the time, but it has taken me a long time to get it up from zero, so I’ll hopefully have it higher by the end of the year.

 

Family Wishes

 

  • L: I hope that L’s behaviour settles down a bit, he’s been quite crabbit lately and it’s very draining. But as he’s non verbal it’s really difficult to know why, what or if anything is causing it.
  • M: M has seriously impressed me this year. He’s came on leaps and bounds with his school work, long may it continue! He’s a very friendly boy, and I hope his friendships flourish in the coming year. He craves friendships and it’s something he struggles with, as social cues don’t seem to catch on sometimes.
  • Days out: I want to make as many memories as possible. To go out exploring as a family – even if it’s just museum trips or something.
  • Family friends: Or more to the point – mum friends! Really easy to go places when there’s another adult to help shepherd kids when one is being unruly.
  • Big Holiday: I want us to be at least halfway prepared for a holiday to Disneyland (hopefully in 2018 / 2019!) Either Paris or Florida.

    Hopes And Wishes

  • Politics: I hope the coming generations aren’t effected adversely by the crap that’s spoonfed to them by the media. I hope Donald Trump ‘s wall falls on top of him and crushes him to death quits. I also hope Teresa May isn’t Maggie Thatcher 2.0
  • For us: I hope at the end of the year I don’t feel as though I should’ve done more this year.  I hope I stick to my guns and continue to better myself & my kids as much as I can. I hope continue to not let people walk over me, but similarly that I trust people more.

 

I’m very late to the party for this tag, as it was a New year thing. So I’m not tagging anyone. You want to do it? Go right ahead!

What are your hopes and wishes for the year?