IVIG

Today I’m off to the hospital to have my IVIG. Just in case you are wondering it’s intravenous immunoglobulin and it’s an infusion which is one of the few treatments for my condition, Stiff Person Syndrome. It’s not bad, I go in, sit in a recliner chair and have my weight and bloods tested before being fitted with a cannula and receiving my infusion. Then I sit and rest for around four hours. Every half an hour an alarm bleeps and the infusion is pushed through a little faster. Then I’m given a little flush of saline through the drip and sent home, usually with the cannula in place so they don’t have to fit it again the next day.

 

I have my treatment on a day ward along with around five other patients. Sometimes I chat, sometimes I read and sometimes I drop off to sleep. It’s all very relaxed. This week I have a new audio book to listen too if I’m in the mood. Before I’ve been there for five days, but this week I think it’s only two. I say think because it will depend on whether they can fit me in again next month. I normally have five days every three months, but my consultant wants me to change to two days every month.

Easter

I’ve always enjoyed the Easter holiday but this year I’ve not really been feeling it. I’ve not been well for a few days now which hasn’t helped but that’s not all I mean.

In the past I’ve enjoyed Easter Celebrations at church. But I’ve not found a church like my old church where we used to live. It’s strange because it felt like my family there and when we moved we tried a new church which made my old church seem boring and stuffy. But the new church didn’t work out because I didn’t feel comfortable there. So, there has been no church.

In the past I’ve enjoyed Easter celebrations at the kids’ school. Easter Bonnet parades, egg decorating competitions, Easter assembly. This year there was nothing! I can understand it with the girls as they are older now, but my youngest is only seven and his school did nothing to celebrate Easter.

7 different pics of my kid in easter bonnets that we have made in past years

here’s one (or seven) we made earlier!

In the past I’ve enjoyed Easter activities with the kids, baking Easter biscuits or making our own chocolate bars but I felt too ill this year and the kids were not interested. We just about managed a little Easter Egg hunt on Easter morning. I felt proud that I’d managed to label the eggs and hide them. That was my effort.

Easter lunch was nice, hubby cooked a fabulous lamb dinner. I didn’t even get up to help him. I think the highlight of the day was probably watching Charlie and the Chocolate Factory with Star in the evening.

We didn’t manage to go out on our planned Easter Egg hunt at a National Trust Property.

We still have two weeks left to fit in some fun activities though. I’m thinking of surprising them with a trip to the Science museum, but it really depends on my health. Fingers crossed.

Curry and Casualty

Hubby went out again on Saturday Evening. I felt ill but I said I could manage the kids alone for one night. We didn’t even have a take out! Go me, I cooked dinner, albeit a curry from a jar. Boo made some fantastic naan bread all by herself, what a star she was, she insisted on helping me with dinner.

Usually when hubby goes out I have the kids in our room and we snuggle on the bed to watch Casualty* before they go to their own beds to sleep. They watched it last week where it ended in a car crash with some of the main characters. They survived the car crash but we all knew that the man was already dying with a brain tumor. Anyway, to cut a long story short, he died, but right at the end of the program. We were all in tears it was so sad, but I’m so glad that I let them watch it because of the way he died. You see, they could have killed him off in the car accident, which is probably what you expect from a television drama, but no, he died peacefully, with his wife and baby daughter by his side. There was no struggle, no pain, just a peaceful slipping away which was so sad, but then so lovely. I was glad that my kids could see that death doesn’t have to be so awful. It was very moving.

*Casualty – A BBC hospital drama

 

Debs Random Writings

It’s Autism Awareness week and I am sharing what I know and what I wished I’d known earlier.

I have two, possibly three children with high functioning Autism.

If your child is not developing properly as a young child or baby then your health visitor will generally lead the way to seeing if your child has autism or other special needs. Often, though, autistic children can slip through the net and diagnosis does not happen early. My eldest child was not diagnosed until he was twelve years old. This was partly my fault, because although I knew he was ‘different,’ I did not know anything about Autism and thought he was just an awkward child.

It’s not easy to admit there is something wrong with your child.

This is often the first hurdle, admitting that your child is different, that something is wrong. With my eldest, both myself and his Dad would not accept that his behaviour was anything other than him being naughty, a typical boy. His Dad would say, “he’s just like me when I was a kid.” But he wasn’t. Well, he may have been, but his difficulties lay much deeper, his problems more complex. They appeared more obvious as he became older and he needed help.

With Star, it was different. I accepted that she was having problems just like her older brother, and had thought that maybe she too was autistic. However, I still kept my thoughts to myself until her teacher at school said she thought she might need further intervention and asked us to refer her to a child psychologist. We did, and she was diagnosed at six years old. That’s a whole six years earlier than her brother. And I’m so glad that we did because she has coped so much better with school than her brother did.

Now, we suspect that the Little Man may have issues. Only it’s hard to admit. Is he autistic or not? We have had suspicions and his early years definitely point to it, but his Dad swears he’s just like him when he was a child (Is history repeating itself?) The Little Man is having a difficult time at school and I’ve suggested we get him some help, maybe a talk with a psychologist, see if he is autistic. His Dad thinks we should move him to another school. I do think that a new school may be the answer for now, but not long term. You’d think that this far down the line it would be easier to admit to there being something wrong, but it really isn’t, not ever.

It’s Not Easy to Get a Diagnosis

This is one area that seems to have gone backwards instead of forwards. It is said that there has been a huge rise in autism diagnosis, but because of the rise it is taking longer for the diagnosis to take place.

With my eldest, I know I held off getting him a diagnosis, but once I’d got past that and arranged for him to see a psychologist, the diagnosis came quite quickly. There was an interview with me and him. A little interview with him (which didn’t really happen because he refused to speak to her.) And a report from his school. That was it, a diagnosis of Asperger’s Syndrome.

With Star, again the diagnosis was fairly straight forward. The main difference was that  instead of a report from the school, she was observed at school. Her diagnosis was High Functioning Autism.

Now we are still considering whether the Little Man has Autism or his problems are related to something else. The school has raised concerns so we went to the GP who told us he couldn’t refer him. The next step is to ask the school to refer him for assessment, but as I’ve already stated, the school has already told us they can’t  and that it’s down to the GP. Already we are being passed from pillar to post without any help and we haven’t even reached the assessment stage.

 

Why A Diagnosis helps.

I’ve found with both my autistic children that once they get a diagnosis things start to get better. On a basic level it seems easier to accept that their behaviour is so different because they have a diagnosed condition. They still need disciplining like any other child, but deep inside it helps to know that they can’t help it. School life can also become easier. These days a lot of school have a good understanding of the needs of an autistic child.

With my eldest it was more difficult because the school were unhelpful, they had no idea how to cope with a child with autism and their first step was to put him in the special needs unit.

Some autistic children do not have learning difficulties, my children don’t. Putting my son in the special needs unit was the worst thing they could have done and he rebelled, a lot! Eventually, after several meetings with  the school I decided my only option was to take him out and teach him at home. This triggered a whole lot of help that I wasn’t offered before.

He had a tutor that would come to our home and teach him one on one. Then he was given a place at a special school for children who couldn’t go to a regular school. This ranged from children with sickness, broken limbs, emotional problems and young pregnant girls. My son fitted in fine. He didn’t have to speak to anyone or make friends which suited him fine, but he did get to learn and eventually do his GCSE’s. It wasn’t problem free, I lost count of the number of times I had to go and collect him and bring him home because he was ‘acting up’ or being unresponsive. But, it worked for us, much better than his previous school. None of this would have been available had he not been given a diagnosis.

I’ve written a lot about my daughter at school. She goes to a mainstream school which is very good with it’s autistic pupils and she is getting along fine.

The Future

The future is the unknown with any child not just autistic ones. But deep in your heart, when your child is autistic you have to accept at some time that the future may not turn out the way you wish it to. If your child is high on the spectrum then you will probably realise that your child will always be with you and the independence you would normally expect your child to achieve someday may never happen.

With a high functioning child, or one low on the spectrum you may have hopes that they will achieve some independence. When my eldest was 19 yrs, he was put forward to a scheme of independent living, where he would have had his own little apartment but still have someone keeping an eye on him. The decision was that he wasn’t suitable for the project. Half of me was relieved, it’s hard to let your child go, but the other half was disappointed that he couldn’t go out into the world and fend for himself (or partially fend for himself at least.)

Star, has ambition, and I do hope that one day she achieves a lot more than we expect. But although I’ll encourage her all the way I will always know that her autism is the hurdle we will have to overcome if she is to achieve independence. I guess, I have learnt my lesson.  A little too late.

 

Check out these Autism Blogs:

http://www.stephstwogirls.co.uk/

http://autisticnotweird.com/awareness/

https://josephamazingspectrumcoat.com/

http://www.autismwithlove.co.uk/

https://faithmummy.wordpress.com/

http://www.rainbowsaretoobeautiful.com/

http://thesensoryseeker.com/

https://mummyhereandthere.co.uk/

https://mummyest2014.wordpress.com/

https://pdaparenting.com/

Monday Stumble Linky

 

Quantum Physics for Kids (and Adults)

Everything around us is composed of very small subatomic particles. The laws of physics does not apply to these tiny particles so a new set of theories was applied, quantum physics.

Despite quantum physics being part of our daily lives it still remains a mystery for most people.

This is not an academic book but it’s a fantastic introduction to subject of quantum physics for children aged 8 and above (and their parents.)

Hardcover: 48 pages
Publisher: Button (7 April 2018)
Language: English
ISBN-10: 1787080102
ISBN-13: 978-1787080102
Product Dimensions: 25.5 x 1.1 x 25.8 cm

The Blurb

Everything in the universe- including light, water, air planets, buildings, animals and people – is made of minute particles. Quantum physics is the science off these tiny particles. The discoveries made in quantum physics have been the driving force behind technological advances ranging from mobile phones to lasers and medical imaging. Without it, most to he technology we take for granted simply wouldn’t exist.

Quantum physics also pushes us to the boundaries of what we know about science, reality and the structure of the universe. In the quantum world particles do strange things, and act totally unlike the objects we experience in day-to-day life. How can atoms exist in two places at once? And just how can a cat be dead and alive at the same time? Find out more with this entertaining illustrated guide to the fascinating world of quantum physics.

First Thoughts

The book is hardback and the pages are thick paper, so this book will last and keep looking good. Each page is packed with diagrams to go along with the text. It makes the explanations of such a difficult  subject very easy to digest.

The book is attractive and inviting, and hopefully it will encourage children to explore this amazing world of quantum physics.

My Verdict

I admit that I do feel intrigued by the world of quantum physics but many feel it’s a complicated subject. This book makes it interesting for the younger generation to grasp and also explains it in an easier manner for adults to get to grips with the ideas behind the theories. Even things that are a complete puzzle to scientists, like anti-matter, have a place in this book and are explained in the simplest terms.

The theory of Schrodinger’s Cat is probably one of the most famous. It’s all about collapsing reality, until you look at the cat in the box there is a 50/50 chance that it is alive or dead. So we can say it’s alive and dead at the same time. But once you look you force nature to decide whether the cat is dead or alive and reality collapses.

Okay, maybe Schrodinger’s Cat is a bit of a mind blower, but at least the explanation is simplified.

The quantum timeline, colourful and illustrated, is great for working out the history of discoveries. Going back as far as 1864 when Maxwell presented his equations on electromagnetism, to 1915 when Einstein presented his theory of relativity.

Overall, I would say this is a very interesting book for all ages for a simplified peek at a very complex subject.

You can buy this book on Amazon, normally priced at £12.99 it’s currently on offer for only £11.34

Happy Easter

It’s hard to imagine it’s Easter when it’s so dark and miserable, I normally associate it with spring. However, I’ve been around long enough to know that it’s not always good weather at Easter. I’ve even seen it snow before.

As I’m writing this the eggs are all labelled and hidden around the house for the kids to find when they get up. They have enough for breakfast, lunch and dinner, and I’ll mop up the sick later! (I’m joking of cause!)

I did think about buying some small eggs to hide, but thinking is about as far as I got. Like I thought about making a Simnel Cake and a chocolate cake for the kids grandma. I also thought about baking some Easter biscuits with the kids, or making some decorations or cards.

I guess  I’ve not been well, or, even worse than usual. My energy levels are at zero and motivation is failing me. My family should count themselves lucky I’m getting out of bed in the morning. (I don’t want to!)

I was hoping to take the kids on a Cadbury Easter Egg Hunt at a National Trust property, but the weather forecast is so miserable we’ll have to give it a miss. My wheelchair doesn’t like rain, or mud.

It’s okay though, we have plenty of time to make amends. I’m only in hospital for two days next week now, instead of five, so that gives us time to do something. And, in less than three weeks we will be spending the weekend in Somerset.

Whatever you are doing this Easter, I hope you have a wonderful time.

 

Photalife

 

Sunday Snap

 

Crochet

I’ve been having trouble finding a single word that has summed up my weeks lately. This week I saw my consultant at the hospital, the kids have broken up from school and I’ve been shopping for Easter.

But in my down time I’ve been crocheting. I have several things on the go at the moment. I don’t know if that’s good or bad, being fairly new to the craft. Apparently the pieces that are unfinished are called wips. I have plenty of them.

I’m working on a baby blanket which is almost finished but I just haven’t got around to doing it. I am also working on a bigger blanket which is part of a CAL, or Crochet Along. Each month we have a little more of the  blanket to complete. It will take a year in total. That seems long for someone as impatient as me, but at least I won’t get bored of it. I’ll just look forward to the little part each month and get on with the rest of the wips inbetween.

I have just finished a bear called Nancy. I didn’t use the required wool as I she was just a practice bear so I used what I had to hand. I think she turned out okay. I also made a dress, a jacket and some wellies for her. Then suddenly Boo took a real shine to her and has not been able to put her down. This morning I even found her asleep on the settee snuggled up with Nancy under my crocheted blanket. (One that I did manage to finish.)

She asked me to make her a head band, so I did. It only took me about twenty minutes and Boo was delighted with it. Next she wants me to make Nancy a little friend, perhaps a mouse in a ballet costume. I need to replenish my wool collection first but I’m quite excited.

Crochet takes my mind of things and helps me to relax. It’s also something I find quite easy to do with my left hand not working properly. I would love to be good enough to make myself a lovely jumper or cardigan. It’s a pity the wool is so expensive but I’d be prepared to pay a little more to have a piece of clothing that I’d made myself.

Do you crochet, have you ever made something you could wear?

 

The Reading Residence