Lockdown – day 3, or maybe 4?

Lost track already! To be honest, because I’m at home caring for C already, the days are not that different. I’m just not doing school drop offs and pick ups or going to the supermarkets which I am not missing at all!

I am, however, still walking Moe in the woods which is a blessing as I’ll go daft stuck in the house continually. I am too much an outdoor person. I’m hearing that if the whole union goes to full lockdown, I won’t even be able to do that. Goodness knows what I am to do with a young, energetic collie who is used to 3 hours of walking a day! Our garden is reasonably big but it’s not the same as walking properly. Last time she had insufficient exercise, she took the initiative into her own hands, leapt the garden wall and headed off across the road and level crossing to the woods by herself. That was after only one day of no walks!

What will be will be though. I can’t control any of it so there is no point in worrying.

Beautiful day today. I’m writing this while walking and the sun is warm, there are a no wind and the birds are singing their hearts out. Weird to think we’re in the middle of some dystopian novel plot!

The big thing yesterday is schools close tomorrow. Entirely sensible and they have to but R is devastated. He is P7 and heading to high school after the summer (presuming things are back to normal by August!) so this may effectively be the end of his primary career.

Leaving was always going to be hard. He’s ASD, dyslexic and very anxious. He makes deep, emotional connections to people and places and this was always going to be hard, even if it happened in June. Now, it’s awful. He cried himself to sleep last night and cried again this m. Lockdown or no lockdown, I am going down to school to get him on Friday. If I get Covid from that, well I get it. My son is going to need a big hug and that’s more important.

Exercise is bad for you!

Out on my morning walk again and again it’s beautiful- bright sunshine, birds singing but ohh it’s cold! I’m hirpling along like a 90 year old as I overdid it at a fitness class with a bunch of friends on Monday. When will I learn that my EDS body can’t keep up with normal people?! It almost hurts too much to hold the phone I am typing on! Still, no painkillers today so that’s a win.

I have a lot of new readers after yesterday’s post so welcome, I’m glad you liked it! I suspect I’ll bore you to tears but enjoy what you can! If you’re real and not a bot, please say hi and tell me how you found me?

A quick introduction- I’m Rachael, mid 40’s with a husband, two autistic kids and a daft border collie. My last remaining parent died last February so I’m working through the grieving stages and trying to support my eldest son through a total breakdown which occurred in 2018. He is unable to see anyone or leave the house or interact with more than a handful of people. He’s developed a phobia of education so he’s unable to learn in traditional ways, I have to trick him instead! I’ve left two professions -as an archivist when the 2008 recession happened and as a microbiologist when mum and ac got ill. I’m currently a photographer and nail technician, hobbies that have become jobs. I’m trying to find my way through all these things and will probably touch on cancer, death, grief, suicidal thoughts, autism, dyslexia, Ehlers-Danlos Syndrome and allergies. If any of those are triggers, I’ll understand.

I did post this on my Linked in profile, which is probably not a good thing as this isn’t a professional blog. There will be a photograph one in due course but I’m spending my days bashing my head against web design programmes and getting nowhere quickly. How, just how does it take quite so long to do every little thing?!

I’m wagging because I don’t actually have a focus today. My physical pain makes it hard to focus and it may end up just being a coffee and painkillers sort of day, a day where no decisions are made or anything of substance done.

I inventoried all my nail tech equipment yesterday. I’ve been diagnosed with an allergy to one of the main components of the first gel polish I used. My polishes now are hypo-allergenic as far as that goes! But I’m not allowed to use it on me and can use it on others only if I am double-gloved and masked. So yesterday, I joined the Coronavirus-panicking crew and bought masks!

I don’t know what to do though, sell up or keep trying. My current brand leaders have loads of folk with my allergy using their products successfully but is it worth it? I honestly can’t focus on two businesses anyway and my photography is important to me.

I don’t know, it’s not a decision for today so I am going to sign off and enjoy listening to the birds and woodpeckers for the rest of my walk.

Recent Photoshoot: The beautiful Scarlett

Recently i got the chance to do a photoshoot with the beautiful little daughter of my neighbours. Scarlett is a happy, contented 8 month old and she was an absolute gem during our shoot.

Hope you like these:

Anger in an Asperger’s child

I have an issue with my son and I am writing because its too long for a quick tweet. We need help. He has meltdowns, that’s not surprising, but his meltdowns are violent and angry.

If he is balked, by me, by his dad, by his brother, he retaliates against that person. He goes from 0 to completely and totally irrational in a nanosecond. He hits, he kicks,he bites, he throws things, he pushes. He is incredibly strong, he’s stronger than me and he’s fast. He cannot be reasoned with and he has no concept of consequences of his actions or how much he might be hurting people.

He terrifies me. It’s very much “you did that so you deserve this. You asked for it” and even if he’s calm, he can’t understand what is wrong with that thought. I can understand that. In his view, one action is balanced out by another. And he’s just 7. What happens if he’s 15? 20? 30? What happens if it’s a girl he likes but doesn’t like him? What if his wife says no he can’t do something or go somewhere? What if he seriously hurts or kills someone?

I see it as my job to try and teach him to manage this and I am patently failing. So how to do it? I have tried rational conversation, I’ve tried teaching him about stress triggers, emotions and taking yourself off to calm down. I’ve asked our community paed, I’ve asked for a clinical psych appt, I asked at the ASD programme for parents and got nowhere. I was told that psych couldn’t help, is that true?

Can anyone else help? Has anyone got any ideas? I’d be grateful if you could share this.

Thank you.

This is an “Asperger’s sucks” week

So C went back to school this week. Always a stressful thing for him after a holiday as its all full of change. He’s been stressed about it for the past week though he has coped with it well, no major violent meltdowns, just a bit tetchy and cross. The going back was fine although he hasnt been sleeping well this week… Which of course has meant that I’m not sleeping well either! He goes to sleep ok (with melatonin!) but round 11pm gets very cross and shouts in his sleep. Because he now shares with Robbie, I’ve whipped him out of bed and in with me fairly quickly. He has kept wriggling about and grumbling and shouting.

We’re all very tired. Sigh.

He was quite cheerful today coming home from school but it was only after stories that this tale came out. Apparently he was lining up after break and dropped out of line to sort his shoes/socks. The boys behind him took his place but C, being C, expected to back in to where he was. This is partly because he is very ordered and everything has to go back where it was and partly because the teachers let him back in where he was. This time, there were no teachers around so they argued as boys do and C eventually lost his temper. Now most kids will yell, stamp feet etc. C is very violent and totally irrational when he loses it which is why he holds himself in very tight control most times.

He won’t tell me what he did but i can imagine! Same as he does to me when he loses his temper: kicks, hits, screams, bites… you name it….

The result was that both boys were in tears for ages and C was lucky that it was the 1st week of school.

He feels so bad about making this boy cry and totally puzzled as to why the boys didn’t do as the teachers do. I’ve had to cuddle him to sleep tonight and i bet i’ll see him overnight again. Its very frustrating as a parent – i just want to make it right for him and i have to try and interpret playground politics for him.

Gah. Asperger’s sucks!

From Asperger’s Syndrome to Asthma…

We seem to be running the gauntlet at the moment!

Firstly, i’ll update as to how we’re doing since Calum got his Asperger’s diagnosis. It was confirmed at the case conference on the Friday morning of his assessment week. No surprises and all the professionals in full agreement. Apparently he is a classic case so there was no doubt about it. Where he differs from many Aspie kids is that he doesn’t shrink into himself and not try in case he gets it wrong, he’s outgoing and will make an effort to be social… on his terms of course. It means two things – one  is that many people think he isn’t ASD because they apparently “can’t be social at all” (wrong!) and the other is that life is going to be a bit harder for him as he grows up because he will obviously get it wrong more often. I am proud of him for trying though.

The Paed has referred us to a group called Cygnet which is a support group. She wants us to be in the age 7+ part of the programme, despite the fact that he is only 5 because she feels the issues they face will be more relevant to us. There was a general feeling around the table full of professionals that his high intelligence will be the saviour of him because he will LEARN social techniques and strategies. It will never come naturally but he will be able to fake it.

She also gave us a prescription for bio-melatonin which she hoped would help him get to sleep.  Melatonin is the hormone that is produced as it gets dark, making you feel sleepy and ASD kids are thought to make less melatonin than neurotypical people.  He was an utter NIGHTMARE in the evenings. So tired that we’d have 3-4 violent meltdowns in the post tea to getting to bed period and he’d take an average of an hour and a half to 2 hours to wind down enough to sleep. I could be leaving his room at 7.30 and he’d just drop off to sleep at 9.30. It was awful. Melatonin is wonderful stuff, i can’t praise it highly enough. Within 15 minutes of giving it, i have a tractable, sleepy little boy who can get his pjs on and snuggle into bed, have stories and be asleep in 10 mins. He’s not drugged, just normal. It has saved my sanity – stress levels in this house are much lower these days.

He has also got a place in the primary school we wanted. It’s less of an issue up here than it is in England but we weren’t zoned for the school that his nursery is in (zoned school too small to have a nursery attached so usually they transfer from nursery to different primary). It’s an easy move for him now. The school is open plan so the P1/2 (composite) is just beside the nursery. Effectively, he’ll move just across the room. They are also doing a lot of transition stuff with the pre-schoolers – they have several classes together (eg gym and “golden time” on a Friday afternoon) and he has homework bags to do over the weekend to get him used to what he’ll be expected to do in P1. He also has been given a “buddy”, a girl who will be in P7 next year. She’ll show him the ropes & be there to help him if he needs it. Despite that, he is still terrified of it. He doesn’t say much but the odd thing he mentions lets me know how scared he is. He’s like me – worries, worries worries about things that haven’t happened yet! I know he’ll be fine, in fact he’ll love it once he learns the rules and routines.

So that’s where we are. The sheer relief i felt when he got a diagnosis was beyond words. In fact, i didn’t really expect it at all but it felt like 5 years of worry and stress just vanished in an instant. He’s been a difficult child since day 1 and for a long time, i thought it was my fault. That i was doing something wrong and just not coping. That lessened after Robbie was born – he is most definitely not ASD at all and now he’s growing up, i can see how odd and unusual Calum’s infancy and toddlerhood were. Don’t get me wrong, Robbie is a rogue and i need eyes everywhere and at least 12 pairs of hands to keep up with him but he’s normal and developping like a normal toddler. C was very restricted and in hindsight, i knew he was ASD when he was about 9 months or so and obsessed with opening and shutting doors. I was exhausted all weekend, just wanted to sleep and sleep and sleep.

So that’s Calum. Now to Robbie.

Robbie has had a series of colds over the last month. The first one, i got him out the bath one night and could see his stomach and throat muscles pumping to get air into his lungs – this is a sign of asthma. Took him to out of hours – oral steroids for a few days and a blue inhaler. It cleared up but a few days later – cold number two. I left it to see if it would clear up on it’s own but nope. Antibiotics for a chest infection but no wheeze this time. On Wednesday, his nose started running again. I was going down to Glasgow so left him with mum. He was coughing overnight and by yesterday afternoon, mum was very worried and took him down to the surgery. More antibiotics  and steroids. She was told to give the antibiotics straight away but to hold off on the steroids unless we had to use them. We got back last night and he had a really bad night & is very wheezy this morning. I have given him the steroids and hope they kick in quickly. Poor wee man. So now to make an appointment with the doctor to review. I am thinking i have an asthmatic on my hands… which of course is not great at all. However, i am asthmatic and have been through it all so i know what i am dealing with and, well, given a friend’s news last week (will blog separately about that), i am relieved that he is here for me to worry about!

Radio silence….

Well my wrist is finally better enough to blog so before i post a catch up, i want to do this get to know you thing:

 

I’ve been tagged on Twitter by @stephalie1977  to answer a few questions!  I have been tagged to complete the sentences below and to tag 5 fellow bloggers who I would like to see do the same.

 I am…..trying to pick images for my exhibition today. After ages of pretending it wasn’t happening, i need to get the framed images to the guy by the 23rd latest so its pandemonium. I have them all blue-tacked up on the kitchen wall and am removing them as i rule them out. The boys are enthusiastic critics! It’s a good position to be in, more images than not but still…

 The bravest thing I have ever done is…. admitted to a doctor that i was feeling dreadful and wasn’t coping as a (very) new mum after an absolutely awful birth and first week. I was on antidepressants by day 9 post birth though to be honest, i’ve probably needed them for years. It was one of the hardest things i have ever done, let a stranger into my feelings. I have spoken to many people since and still don’t feel comfortable with it. If it wasn’t for Niall begging me, i wouldn’t have done it.

I feel prettiest when…. Hmmmm. Toughie. Not sure i ever feel pretty… Next question!

Something that keeps me up at night is…..my boys. Calum usually crawls in with me overnight and then bounces awake at the crack of dawn. Robbie is a terrible MAN when he’s ill and often wakes overnight because he needs a cuddle.

 My favourite meal is…..Spinach flan and chips followed by crumble and custard. I’m drooling just thinking about it!

 The way to my heart is….by being honest and friendly and being willing to listen to me when i am feeling rubbish and low.

 I would like to be…..a photographer/geneticist/neuroscientist/geologist/physicist/cosmologist… WAY too many interesting things in the world!

 

I am so late on this, i haven’ t actually tagged anyone. I reckon the ones who would be willing to do it probably have already!

Acceptance

This is a word i’ve been thinking about a lot this week, sparked by the fact that it is Stupid Girl’s word of the week (http://generationwhynot-stupidgirl.blogspot.com/).

Acceptance is a toughie for me and i think, to be honest, it’s at the root of a lot of my depression issues. Acceptance for me, at the moment, is allowing myself to <accept> (trying to think of another way to say it but i can’t!) that this.. routine…shambles… is my life, that it’s not going to change and that it isn’t worth trying to fight against the current to improve it.

Niall and i have been fighting against the current since we met really. We met at work in Edinburgh, he works for the Scottish Government. The accepted, traditional thing to do would be to stay in the central belt of Scotland & bring our kids up there. We did for a while but i was thoroughly miserable in my  job  & i’ve never been a city person. When a job came up in Caithness that gave me a bit of responsibility, N encouraged me to go for it.

It has been, by far, the best job i have ever done. It took me ages and ages to settle and we lived an odd, nomadic life where he worked in Glasgow 2 weeks and out of an office in Caithness for 2 weeks. I rented a house in Caithness and we tried to sell our house in Coatbridge. I’ve never lived on my own before and i completely adored it. I fell in love with the area and was happy in my job. We decided to try for a child and i was delighted (and terrified) to get a positive test on 7 July 2005 (as it happens, the day of the bombings in London).

The swimming against the tide trouble began soon afterwards when N’s division decided to re-organise. They promised to keep us informed as their deadlines for the reorganisation co-incided neatly with my due date. We lived outside of Wick now (where the only hospital was) and i was terrified of being left on my own around my due date. Of course they didn’t and it was a very stressful situation. Even as i went into labour with Calum (N thankfully with me) we had no idea what was happening about his job.  It worked out ok as it happened. They deleted his post 3 weeks after Calum’s birth but kept him busy with piecework. This was just as well as i had a train wreck birth and a nightmarish first few weeks with our new baby. I was on anti-depressants at 9 days post partum! He got a job in Aberdeen when C was 5 months old and we moved here, 5 mins from my parents. Niall got a job in Glasgow/Edinburgh in April of last year and has been Sun/Mon-Thurs down there since. He stays with his mum during the week.

So the first major thing i had trouble with was accepting what had happened to me at Calum’s birth. I had a speedy (6 hr active) back to back labour and Calum had his head tipped backwards and therefore got stuck. Now i know him, this doesn’t surprise me in the slightest! Cottage hospital so no epidural, midwives telling me i wasn’t trying hard enough, panicked and had to beg them to get the consultant in. He tried forceps & ventouse (not gently) before whisking me through for an emergency section.  I felt like i’d been hit by a train and was in free-fall, not knowing where i was going to land. For the first two days, just turning over in bed was a major effort. I found the catheter humiliating and i had a stroppy, cross, demanding little boy. He wouldn’t latch or then would and bobbed off immediately & refused to re-latch screaming in frustration and hunger. If we did get him latched, he’d feed for what felt like hours then be screaming again after 10 mins off. My body had felt completely invaded since the and of pregnancy, attacked by forceps & ventouse (the section was a godsend, i could have kissed the anaesthetist) and then here was this little screaming thing wanting more from me. I just couldn’t do it. By day 4, i had had 1 hours sleep overnight and i swear, if the midwives station hadn’t been by the door, i’d have been out of there and left him. i might only have got as far as the stairs but still.

So, back to acceptance. How do you accept that? Time, anti-depressants, CBT, supportive family. But occasionally something comes up that reminds me. Like BF tweets this week or offensive advertising campaigns in NHS premises implying that BF babies are healthier than FF babies. I do a great line in self-guilt. It’s better since the CBT but it will never go. i felt awful guilt: that my body “couldn’t do birth”; that i couldn’t feed my baby naturally; that i wanted to run out on him; that i didn’t love him the instant i saw him… I rock at beating myself up!

Robbie has been the biggest factor in acceptance. His birth was ace, i loved it and would do it again in a heartbeat. i had planned a section as i couldn’t face going through it again. From 1st contraction to birth was 5 hours, we had to be ambulanced into hospital with me pushing on the way and Robbie was born 45 minutes after we arrived, just on gas and air. I could have BF him successfully i think. So i no longer feel like a failure for what happened with Calum. It will always be a sore point but i have accepted it wasn’t my fault.

Calum also has an Autistic Spectrum Disorder. We don’t know what yet. We have an assessment week the week after next & 11th March is the round table conference day. It’s pretty mild as far as they go and i am not sure we’ll even get a diagnosis. They keep telling me that they don’t want to “label” him. Crazy surely? He is who he is. He’s the most egocentric creature i have ever known. Everything revolves around him, the games he wants to play, the things he wants to do, the things he needs. Any refusal for whatever reason, results in automatic violent screaming tantrum. He cannot understand that other people have needs/things to do too. It’s exhausting and demoralising. The (several times a day) tantrums are horrific. I asked the last paed we saw for advice and was told “put him on the naughty step and tell him firmly no”. Oh and “he can’t be autistic. He’s chatting away and is making eye contact. I advise you not to go for assessment”. WTVF???????? Yes, he’s chatting. It’s on his set script. And no, he’s not making eye contact. If you look carefully, you’ll notice he’s gazing at your forehead or cheekbone.

So the 2nd major thing i have to accept is that my son has a problem. I have accepted that (I think)  but am struggling to accept and manage his behaviours.

Finally (& well done for bearing with me!), i have to accept my place in the world. I was an archivist. V specialised and no money for such things now. I don’t have the right experience/too much brains/scary job titles for most employers here and i loathe being a stay at home mum 24/7. I can’t see me getting a job anytime soon. I struggle to deal with all this on my own during the week while it feels like N has the best of both worlds. I need to accept that too. I am also doing a level 1 OU science course. I love it but i am not sure where it is taking me or whether i can continue following this course.
So acceptance. Patchy and difficult in my life at the moment.