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