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

 

It’s coming home! (Hopefully)

Normally around this time, I’m settled with the tennis. Every year I become zombie like, grunting responses to questions unless they are about Wimbledon. This year it is different. The World Cup is on and it takes precedence because it’s only on every four years so I’ve graciously allowed the husband to set the tv schedule. See how I’m getting to grips with this compromise stuff 😂

I always support Portugal. I always have. I’ve even got a couple of football tops to wear on the occasions they play. My husband, being part Italian usually supports them. They didn’t qualify this year though so he supported England from the start, even has a pound on it in a family bet! Lots of the big teams didn’t qualify this year or have gone home early, including my beloved Portugal so I got on board with supporting our team. I will always support home nations anyway alongside my own team, except in rugby where I go for Scotland due to my heritage. To be honest though I went off England after linekar’s era as the later England line up seemed to me to act like they were owed it and had an arrogance I didn’t like.

This team, however, have come out playing their socks off, knowing they have to earn it, knowing there’s no such thing as a “sure thing”. Mr Southgate has a team that seem disciplined in the face of some really dodgy players (Colombia) and are hungry for victory. I am not a football buff, full of knowledge; I mean I used to go to Burnden Park to watch Bolton wanderers, this is just my ramblings about this World Cup.

I was gripped by the penalty shoot out, we don’t have a great history in that department. And yesterday they won outright. No extra time, no penalties (I don’t think my nerves could take another one of those!) and great goalkeeping. My husband and son in law were screaming at the tv when sterling(?) missed two open goals. I missed the first goal dealing with Oliver, but it was such a good atmosphere.

The streets were silent when the match was on. People who don’t watch football were watching. People were hugging strangers at the end. And this was so nice to see. Our country is so divided at the moment with Brexit, Trumps planned visit, the continued squeeze on incomes etc so it was so nice to see our country united on something. It was nice to see people happy and together. No barriers, everyone wanting the same outcome. (I say everyone knowing it’s not literally everyone)

Even if it doesn’t come home I think we can be proud of the England team. They’ve done so well and conducted themselves with dignity and humility. Now we wait to see what Wednesday brings. Up against Croatia I think which won’t be easy. Good luck England!

The biggest question remains though, which World Cup song is better? I believe it’s world in motion but my husband thinks it’s three lions (it’s coming home). Obviously I’m right 😉

Xx

Food banks and period poverty

I know that in England the use of food banks has gone through the roof, even for working families. Wage freezes, high rents and increase in food and utilities costs have really squeezed families. In our church we provide porch boxes and our family contributes when we can as both me and the husband have been poor, so we like to give back where we can. There are baskets in supermarkets where you can leave contributions too. As well as food we have contributed toiletries like shampoo, toothpaste and deodorant. One thing we have never contributed or even thought about until today is sanitary products. I don’t know why. I suppose I assumed people would buy necessities and a see that as a necessity. But then so is food. I don’t really know what I was thinking.

Today I was watching tv and an advert came on for Always sanitary products. It was talking about the importance of school and at the end it did that “buy our products and we will contribute to period poverty so girls don’t miss school” thing. It’s always bothered me that products are taxed because they are “luxury products”, I kid you not. We obviously choose to give in to this need to have periods so have to pay tax! Or are we expected to go back to the days of monthly rags that are washed each time and so hygienic?

I am really bothered by my own ignorance though. How could I, as a woman, not be thinking about what other women need? It never occurred to buy those kind of toiletries but I know about the poverty levels in this country. I know kids are going to school hungry. I know the liberals pushed successfully for free meals for all kids up to year 2 so they at least got one hot meal a day. I know the teachers who take in extra food to feed the ones they know are in dire straits. Now I know about period poverty too. And now I can do something about it.

How can a developed country like ours find money for weapons, wars, bailing out banks, new railways we don’t need, paying to keep the government propped up, yet we can’t pay a living wage? Homelessness is growing, there are no rent controls which puts more families at risk. Working families using food banks. Girls missing schools because they have no money for a tampon. How can this be happening in this day and age. I wonder when the first workhouse will be reopened. Even with all the advances in technology and medicine etc I feel we are going backwards as a nation. The rich/poor divide is huge and just seems to be getting bigger. Those in charge should be ashamed, but they never are. It isn’t them deciding if heat is more important than food this week.

Xx

DLA The final

As you may know we have been fighting the DWP in regards to Oliver’s disability. They downgraded him, we disagreed. We appealed, they dismissed us. We filed for tribunal and got letter of support from our doctor and I dug out all relevant information from his vast file. We sent off photocopies of prescriptions, the letter, a further explanation in what we have tried, an explanation of his presentation of autism, EHC’s ……in short everything!

Our appeal was accepted by the court and we were told to await a date and information on court choices closer to us. We decided that we would go wherever gave us a date first.

Today I received a letter from the DWP stating they have changed their minds and have awarded Oliver the high rate of care component and low rate of mobility. So we don’t have to go to tribunal now.

From speaking to some parents about this I found that a lot of ASD kids had been downgraded in the dla scheme and the parents were just too exhausted to fight anymore. Is that what they are relying on? Parents not having the energy to fight to save the government a few quid? They have the money for weapons and HS2 which we don’t need but not the money for the vulnerable in society. I don’t blame the parents, God knows I felt like giving up, we have enough to do without having to fight for every last thing our children need but it was the principle of the thing. How can someone who has no knowledge decide on my child’s disability?

For us we would have taken it all the way with the risk of losing. It was important to have our voice heard but it was more important to have Oliver’s voice heard, the challenges he faces daily, the help he needs to become all he can be. I choose which battles to fight now, there are too many to take them all on and I can’t physically or mentally fight them all. I triage them; what he absolutely needs, what he’d like, what we’d like if we didn’t know about the current climate of cutbacks. I’ll probably get it wrong at some point, maybe already have. But I try my hardest every day for him and he tries even harder than me.

Xx

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