Autism, and other stories

I’ve never done anything like blogging before.  I am not very tech savvy but writing a book seems like a lot of hard work for someone who’s brain is often on many different tracks so this seemed like an easier option.

I have 4 children, 2 daughters and 2 sons.  The lads are on the Autistic spectrum.  My 23 year old is non verbal and at the severe end and my 4 year old is classed as moderate, for now.

One thing I remember from counselling is that she said talking about things often helps put things in perspective and as I can’t afford £50 a throw for counselling this is it!

So this will be my take on our family life, family life with ASD – the good, the bad and the ugly!IMG_1200

 

Eurovision.

Tonight is a very exciting time. It’s Eurovision!!! I know a lot of people think it’s cheesy and fixed to a degree with friendly countries giving each other the coveted 12 points but as a viewer I don’t really care.

It’s been ages since we won. It’s claimed to be political but considering the songs we’ve submitted recently I think it’s more the poor quality that has let us down. This years is no exception in my opinion. It’s a nothing song.

I love the spirit of Eurovision. It’s all of Europe coming together to celebrate music (ha!) and each other’s culture and it’s fabulous to see so much love and happiness instead of the hatred and bickering we see on the news. With Brexit, there are new calls to withdraw from the competition as we put a lot of money into it, but I think there would be very glittery riots if that happened. There are Eurovision parties going on everywhere, drinking games, food consumed, score cards printed and everyone is suddenly an expert on what constitutes a good entry. For me it’s a performance with pyrotechnics, a fist of power, wind machines and traditional dress. Oh and a really catchy song. I voted for a song entitled “we are the winners” a few years ago. It was simple but brilliant. I’d post a link but I’m not sure if it’s allowed or even how to do it. I usually support Azerbaijan but they’ve been knocked out so I’m thinking Moldova this year.

My husband never watched Eurovision til he met me and his choice for that Saturday was seeing me and watching Eurovision or not seeing me and he chose the former. And to show he knew how much it meant to me, he made flags of every country who entered and made bunting out of them. We still have them, 10 years on. Sometimes we make national dishes for the evening but this year we are having a curry and mojitos. It’s been a busy time so it’s a night for chilling. Eldest and her husband coming round too. I’ve told her if she goes into labour tonight she’ll be going into hospital on her own til Eurovision is finished 😂.

The controversy was when Australia were somehow allowed to enter, something to do with broadcasting companies. I think we were jealous they did better than us but everyone loves Australia!

If you haven’t watched it, you should give it a go. It’s a fun night for most of Europe and I think with new televisions there’s an option to put on song lyrics so you can sing along.

Now I must go make my score cards. Happy Eurovision day!

Xx

Scarlet fever and antibiotics

Oliver had his birthday recently. He woke up with a red cheek and a cold. Thankfully it didn’t ruin his day, he opened presents, opened his cards and was quite social. By the time of birthday tea his other cheek was red. We put it down to sugar or an eczema flare up as he didn’t have a temperature and showed no other signs.

As he seemed fine I sent him to school as normal, explaining to the teacher about his lack of temperature but with the proviso they called if he showed any deterioration. He was fine at school, didn’t eat much but that’s not unusual. He refused his dinner, stopped drinking and went to bed and to sleep on his own! He slept through. The alarm bells were ringing when I woke at six and he was still asleep.

Rash had spread to his arms, got an emergency appointment as it seems scarlet fever and slap cheek is going around. The doctor checked him over and debated between the two possible diagnosis. After discussing his temperature which was over 38 last night and his reluctance to put anything in his mouth he decided to treat for scarlet fever. The lack of eating and drinking suggesting sore throat. The fact he had taken calpol the night before with no fight meant he felt rough. He had chicken pox a couple of weeks ago so we have been given antibiotics. Four times a day for ten days of the most disgusting medicine possible. As you can imagine, I’m thrilled.

Oliver does not like medicine. Took me months and many bottles to get him to take liquid paracetamol. Now I present him with this stuff. He understands “sore” and he knows when he has calpol he feels better. I think he thinks I’m trying to poison him with this stuff. I’ve put it in juice, he refuses to drink. I try to bribe with goodies if he takes it. I even resorted to pin him down and try to make him swallow but failed. He’s never had antibiotics before. The rash is now everywhere. With him having just had the pox, I’m more concerned than I usually would be over this, there can be an increase in other things like pneumonia so I need to find a way to get this down him. Usually if it meant that he could fight it on his own but would stay off school then I’d go with that, as exhausting as that is. He can go to school 24 hours after starting antibiotics but that’s not the reason I need him to take them. I’m terrified of complications because he isn’t a healthy eater or sleeper and his immune system is not the best so he’s a prime candidate for complications.

How do you explain to him that this will make him better when it’s so vile? We are hardwired not to eat “yuk”. I’ll try some in yoghurt later and see how that goes but why can’t someone make medicine that doesn’t taste like crap? It would make my life a little bit easier. I’ve tried the mummy has some/Oliver has some, in the hopes of reassuring him but he looked at me like I was mad. It can’t be just us who have this problem. I’m tired of being the bad guy when I’m just trying to help but that seems to be par for the course in this family at least.

Xx

“I don’t want to be your wife anymore”

Those were the words I finally had to speak to my husband a few weeks ago.  They were not said in anger, they were not the result of a row.  Since being married I feel he has become more secure, which is great, but I have felt less secure.  We stopped talking, he’d play on his phone of an evening when we were supposed to be watching a film, he’d come in from work and be on his phone, and yet when it came to him wanting to do something, we were all supposed to just be in good moods and grateful he wanted to spend time with us.  As you can imagine, feeling like a piece of furniture is not conducive to a great relationship so we did have a row about his phone and lack of interest and he said he’d try harder, especially with the kids, and he has.

I still didn’t feel right.  Instead of looking forward to him coming home, I dreaded it.  I hoped he’d have to go away for work more than I usually did and I decided that I needed to figure out what was going on in my head.  I don’t like doing that.  I usually bob along, making sure everyone is happy and that’s enough, except it’s not is it? Not really.  I file things away in my brain and don’t deal with them.  I’m not good about talking about my feelings either, it’s hard enough figuring out what I’m feeling, never mind explain it to someone else.  I was really unhappy.   He knew I was unhappy.  I kept talking about how I didn’t understand the world, how I never have understood it.  I don’t “get” people and their games, and why they lie, and why they don’t just say what they mean and I feel like I don’t belong to anything and never have done.  Except for my kids.  I fit with them.  They don’t have expectations of me in the same way.  They expect me to be there and look after them, obviously, but they don’t expect sparkling conversation or little amusing bon mots, I’m just there to be mum which I have done for, like, ever- so it’s something I know I can do.  Kids are easily amused, you just act daft and tell poo jokes.

And that’s when I knew what the problem was.  It’s the expectations that fill me with anxiety and unhappiness and the fact that I know I can’t fulfil those expectations.  I am not like most people, I am a nervy, anxious person and according to my husband very black and white about certain things like lying.  I don’t understand lying.  It drives me insane.  Why bother telling lies- you will get found out then trust will be broken and I will think you were trying to make a fool of me.  Ok you don’t have to be blunt but there’s nothing wrong with being honest.  Anyway, I’m going off the point.  The point is I can’t be the wife he expects, society expects and that I think everyone expects.  I couldn’t be the daughter, the sister, the girlfriend that was expected and I’m tired of failing.  So I told him I didn’t want to be his wife.  I told him if he wanted to go and find someone more “normal” he was welcome to, and I wouldn’t hold it against him and we’d make it work with the kids.  As I said, I am not good at expressing myself and the conversation went on for quite a while, as he was checking if I wanted to leave (no), if I was looking for someone else (no), if I was having another breakdown (no).  I just wanted to have my friend back who used to laugh with me, support me, have fun with me, talk nonsense with me, and all the other things we used to do.  I told him being a mum of 4 with each child having such great needs, and the lack of sleep meant I couldn’t be “a wife” the way he wanted.

Then he asked what I needed from him.  I told him I needed no pressure and I needed to know what he wanted.  He wants to be with me.  He wants us to stay a family.  He wants me to deal with everything that’s happened over the last 40 years, however long that takes, and he wants me to be happy.   He told me he didn’t give a **** what society expected.  He told me he always knew I wasn’t like everyone else, then proceeded to list all the ways in which I was different.  The list was quite extensive!  But, he said, I made life more interesting and challenged his ideas on lots of things and came at things from a different perspective.   Him being distant didn’t help our relationship but me being unhappy and maybe pushing him away definitely didn’t help.  Catch 22 situation.  So we are together, in that we are sharing the house and the children, but also back as friends.  Since our chat I feel relieved that he is willing to stand by me while I sort through my head and that he doesn’t expect me to change with regards my “oddness”.  I have found someone I don’t have to pretend with, pretending is exhausting.  I might get a chance to be myself.

I know this may have been a really selfish action, it’s all about me kind of thing, but I didn’t want him to stay and get nothing from it.  He’s allowed a life too.  I’ve told him he doesn’t have to do everything with me.  I’m not keen on going out so if he wants a night out with mates he can do it guilt free.  It’s a work in progress though as I’m not the only one in this relationship with issues.  Just as he has helped and supported me, I will do the same for him, when he’s ready.  We are happier now.  I don’t know how long it will last, I suspect our relationship will always have problems but I think we both feel a bit more confident broaching things with each other now.  If I was going to be with anyone, it would be him, we just have to define what “wife” means to us.  For the first time in a long time I feel a little bit optimistic about the future.  Just a little bit.

 

xx

7 days, 3 hospitals, 2 pox and one pizza ceiling.

It has been a very eventful week. My daughter had a couple of worries with the baby not moving and thinking her waters were leaking so she went to the doctor who immediately sent her to the maternity assessment unit as her blood pressure was high, her pulse was racing and her temperature was up.

At the unit, they hooked her up to monitors, started a trace on the baby, called a consultant and told us they had 15 minutes to treat if it was sepsis and may have to deliver at 33 weeks.  As you can imagine, this did nothing to help the blood pressure situation and with the consultant appearing in 10 minutes (I know, right, you never get them to appear that quickly) we were a bit worried.  I had taken her to the hospital, her husband was at work.  I had a word with the midwife who said to phone him because if they have to do anything it will be done quickly.  So they hang a drip with fluids and paracetomol to try to get the temperature under control.  She had a cold so then they were thinking flu, did swabs, took blood, and then moved her to HDU on the labour ward for 1-to-1 care until stabilised.

Thankfully, they managed to get everything under control and four days later she was released.  Unidentified infection treated with broad spectrum antibiotics, baby measuring fine.  Phew!  Lets go back to enjoying the easter holidays.

2 days later I get a text off one of the mums at school.  Her son has chicken pox.  He is in the foundation unit same as Popples, they have FS1 and 2 in the same unit.  I said I would keep and eye on Popples and if she didn’t get them I would be bringing the kids round for a pox party.  Didn’t need to go anywhere, she had a couple of suspect spots til after the bath- then she was head to toe, even in her hair!  Brilliant!  They could get the pox finally done with and not miss any school.  Oliver showed no signs except a snotty nose which he tends to have until spring anyway.  She had a raging temperature and couldn’t sleep due to the discomfort, so that was fun.  The calamine cream didn’t seem to work, so she has had a lot of cool baths.

2 days after that I was putting up the trampoline they have got for birthdays in the hopes it would save my furniture.  I managed to get the springs onto the frame which made them happy and they sat on it whilst watching me sort out the safety net thing.  As I was opening the metal rods that go at the top to keep it stiff and in place, I didn’t check to see exactly where they were.  They sprang open and caught Oliver in the eye.  Totally my fault, I know better and I should have checked and rechecked.

He started screaming, under his eye was bleeding and I applied a cold compress and tried to check his eye.  He wouldn’t let me look, I couldn’t drive so I asked my daughter to take me to A&E.  After 3 hours a doctor tried to check him but with him not being very cooperative and just alternating between “no, hurt” and singing get well soon, we didn’t get too far.  As a precaution he sent us to another hospital 20 minutes away that has a specialist eye department. Thankfully the nurse there let us jump the queue as by this point Oliver was really agitated.  The nurse and I had to hold him down, he had stuff squirted in his eye and the specialist finally spoke. “No abrasion, no damage to actual eye” and I almost cried with relief.  Oliver couldn’t tell me if he had blurred vision or if it felt wrong so we had had to go to the hospital.  He gave us some cream as the cuts were near his eye and he didn’t want it getting infected.  6 hours after setting off for casualty we could finally go home.

That night in the bath, I noticed a couple of blister spots on his back.  Yep he had the pox too.  I offered him some medicine last night and he nodded and took it so must have been feeling rough.  He’s having a pyjama day today. Hopefully all spots will have scabbed by school on Monday.

Oliver has returned to his old favourite pastime of throwing things.  He is bigger and stronger now so can throw a lot further.  Gooey louie now has no snot left as it’s all been thrown to the ceiling as it sticks.  I made pizza for lunch today so they can pick at it throughout the afternoon as they haven’t had much appetite.  Oliver took his into the kitchen, I thought he was eating on the picnic mat he’d made me put down for them the other day. He came in with a half eaten piece, put it on the plate then took another piece.  He came back again with a half eaten piece so I went to see exactly what he’d been doing.  I saw a bit of cheese on the floor so I picked it up and asked “what’s this” he looked up and said “Stuck!”.  I followed his gaze and sure enough it was stuck.  Bits of pizza stuck all over my ceiling, and tomato sauce where the cheese bit had dropped off.  He is obviously doing some kind of gravity experiment or it must be really good fun to make things stick to the ceiling.  He helped while I was cleaning it up by pointing out the bits of sauce I’d missed.

An that was a week of our restful Easter holidays where I was hoping to recharge a little.  Max got the best deal, his respite people stepped in and took him for a few days as he was stressing about Emily in hospital and the whining of the poxed one gets right on his nerves, so at least someone got a break. Oh and we managed to get the appeal done and sent off too.

xx

 

Weekly round up

First off Max has had a look around his potential new placement. It’s a day service based near to home with a package tailored to his needs. He is going for a half day trial next week to see how he feels. He won’t have a 1-to-1 which I’m pleased about as hopefully he’ll be encouraged to do more for himself and make his own decisions. Obviously if he doesn’t like it, we will look for something else. It’s got to be right for him.

Oliver has had his DLA rejected again. We now have to file something official , it’s all changed since I did Max’s appeals. I’ve spoken to his GP who is astounded and is going to write us a letter to send as evidence. They seem to have got it into their heads that he has promethazine during the day and with appropriate aids he can be left at night. I told my doctor what they said but he said gagging him and strapping him to a bed is not ethical. I seriously doubt they’ve read anything I’ve written.

To cheer himself up, Oliver decided that the toilet was the best place to play and I have fished out a tennis ball and a pebble. I didn’t manage to get the rubber duck which blocked the toilet. He then decided to do a poo in the blocked toilet so you can imagine the fun we’ve had this evening. It was not a pleasant job.

Popples is doing well and will be getting an award at the well done assembly on Thursday. She’s 3 and knows everything. She’s looking forward to church on Sunday as there will be a real donkey for Palm Sunday. Her sister is due a baby in May and she keeps asking when Emily is going to get a donkey. If you have a baby you have to go on a donkey before it comes out. I think she is going to try to get the donkey for her sister on Sunday.

Yes I’m going to be a grandma. I don’t feel old enough to be one but I didn’t have much say. They haven’t found out what they’re having but I’m betting girl. I have a pound riding on it.

So it’s been a mixed bag kind of week. I’m hoping for an easy evening and four hours sleep. Hubby is cooking for me so that’s one less stress and as he’s been out working the last 2 evenings I’m hoping to bump bedtime story time to him too. Ooh just remembered I have mother’s day chocolate still to eat, the evening is looking better all the time 😉

Xx

Dr Ranj and Get Well Soon

Get Well Soon Dr Ranj with Jobi

Dr Ranj is a real doctor and he’s on all kinds of programmes but the only one we are interested in is Get Well Soon on Cbeebies.  He is a very smiley patient doctor who is visited by a whole range of puppet patients with a variety of ailments.  He listens to them, listens to their worries, talks about their illness and how to help it get better.  Simple premise yes, but until this programme overlooked in my opinion.  Children get poorly or have to have injections and have to go to a place that often smells funny and let a practical stranger look at them and are supposed to make sense of that.  Now I know we talk to our kids about trips to the doctor, dentist and others and can talk about getting better- but how many of us do it to a funky song and dance routine?!

Oliver has spent a lot of time being poked and prodded when going through diagnosis and then the genetic testing so as you can imagine he is mighty upset when he has to go to see the GP.  By the way our GP’s are fantastic, very patient and friendly.  It usually results in me saying what I think is wrong while he turns all the lights off and crawls under the examining table so he can’t be looked at.  At home we play with the medical kit regularly, the toy one obviously, and the little ones now know how to look in ears, eyes, take a blood pressure and give mummy 500 injections.  If I don’t say “Ouch” they do it until I do.  I hoped it would help with doctor visits.  Alongside this we started watching Cbeebies, we were Milkshake fans for a long time, and came across get well soon.  The kids were entranced.  It is colourful with lots of singing and not everyone is happy.  But it’s ok, they don’t have to be.  It’s ok to be scared and worried and sad that you’re ill.  And more importantly it’s ok to tell the doctor if you are feeling those things.  Dr Ranj explains without being patronising.  Watched a brilliant one on asthma.  My sons favourite is the ear infection though, the song made him giggle and he actually tried to join in the singing.  His version went “doctor, doctor, ear- OW!” which was close enough and he loved doing the OW! bit and dancing.  (the words are “go to see the doctor when your ear goes OW”) so pretty close.

Anyway he had to go, coincidentally with a suspected ear infection and although he didn’t like it much he was much better at being examined.  He let our doctor take his temp, look in his ears, listen to his chest, almost let him check his throat and suffered the pulse-ox finger monitor for 15 seconds which was brilliant.  Then he went and turned the lights off.  I understand that the NHS is under strain and GP’s are supposed to keep to 10 minute appointments but I have to say that mine never make me feel rushed and if I go in with a sick child, they take the time to talk to the child, explaining what they are doing and why.  I think it’s important that the child feels like they are involved, important and have some say.  When Popples had a hip infection, she was only just 3 but the doctor said to her “can I just put you up here on the bed and have a look at this poorly leg” which made her feel like she had a choice.  When he said to Oliver “can I see inside your mouth” he got a “No no no” so he didn’t push it (we weren’t overly concerned about his throat, it’s just if he sees him he likes to do as thorough a check up as possible as we don’t go that often) , but then got to listen to his chest.  It builds up trust and lessens the fear.  I think all doctors should watch get well soon, some of the ones we saw at hospital had no idea about children even though it was their specialty.  All I need now is for my GP to learn a few song and dance routines, although I suspect the kids would then be feigning illness in the hopes of seeing him everyday!  If you haven’t seen it, you should give it a go.  I should warn you though that the songs can get stuck in your head.

Until next time- Be happy, be healthy and get well soon!

xx

DLA- the result!

Oliver has been receiving the high rate for personal care since we first applied.  Nothing for mobility because his legs worked.  We had to reapply just before Christmas and I said to my husband “they’ll lower it to middle rate” and he laughed and said they couldn’t as he was no better in real terms- he still needed 24 hour supervision.

Fast forward to today and I got the letter- middle rate for personal care as he needs helping to toilet for a few minutes through the night and low rate mobility.  What happened to all the other pages of the form?  You know the ones where I wrote about his lack of sleep, his night time wanderings if not supervised, his lack of awareness of danger which means he will try to climb over the stair gate at the top of the stairs if it’s shut and he fancies one of his “lets turn all the lights on in the house and any electrical appliance I can find” nights, his screaming and wailing if he is left too long on his own which wakes the whole household.  The 2/3 hours sleep I am on with him.  The getting him dressed and redressed in pyjamas when he has an accident with trying to keep him calm and quiet in the semi dark, and it goes on.  I provided evidence from school, his doctor, paediatrician, provided numbers for therapists.  Do they actually get in touch with anyone?

Our GP has recently prescribed something that might be able to help with sleep, when we feel he needs it.  Why would it be prescribed if he was a good sleeper?  The mobility I expected, I don’t think it’s right but I did expect it.

Needless to say we are going to appeal it.  Along with all the other things we have to do we now have to put together an appeal- although the rules for this have changed since my last appeal, so I will first have to figure out the new system, no doubt put in place so no one knows what they are doing and the people who need the money get fed up and stop claiming.  How can people who aren’t medically trained make decisions regardless of what the professionals say- it’s absolute madness!

 

xx