Me and my girl and boy, raising awareness and acceptance of autism

Archive for the ‘Family’ Category

Would you want to know what’s in store for you?

I was chatting to another special needs parent this morning, comparing our daughters’ progress (he has a 14year old with Downs Syndrome) and our weekends – as you do.

I told him what my mum was currently going through (the medical miracle that she is) and he mentioned companies that offer full body scans which apparently can predict the likelihood of cancers, strokes and other nasties, based on genetics and advanced screening.

His reaction to these was “I wouldn’t want to know” but mine was different, I would want to know and here’s why:

As the Mumma to two autistic children, I want to be around for them for as long as possible. We are lucky, on both sides of the family there is a history of angina and more recently, strokes, but hearts are strong and healthy. No cancers either until recently.

Were someone to tell me that I had a tiny lump which was genetically disposed to turn nasty in ten years then I would have a choice of removal. Similarly strokes and diabetes: there are lifestyle changes that can be made.

It wouldn’t be for everyone though, I think you’d have to be strong emotionally and mentally.

I can think of a very good example in which this may have been useful:

We had a friend, a good friend who went through years of hormones and IVF without success. Practically as soon as they married 9 years ago.

She developed breast cancer 6 years ago and all fertility treatment was stopped, it had to be. She went into remission and they started discussing the process again and also considering adoption/fostering.

The cancer returned, in her brain. Completely unexpected as the doctors hasn’t scanned above her neck. She died five months later, nearly 2 years ago.

It has not been proven but there has been speculation that the intense fertility treatment may have advanced the tumours, no one will ever truly know but she went through years of treatment and failed hopes to no avail.

Maybe, advanced notice would have meant that her and her husband could have enjoyed the few years they had together more. I don’t know.

What I do know is, that once she knew her timescales, she planned, saw who she wanted to see, went (within reason) where she wanted to go and became very peaceful. The little things just simply didn’t matter.

Some people might think this is playing devil’s advocate but it’s certainly made me think today.

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“Oh dear, my cows are loose” A #Funee post

It’s been a strange week, to say the least.

The sudden news that the consultants had done a u-turn and agreed to perform the operation on my mum to remove her cancerous kidney, the worry that it was a high-risk operation, the waiting, the relief when she DID survive it and the complications afterwards.

Through all this, the children have needed their routine, their stability and – although I’ve only told them the minimum – I have been a bit of a snappy Mumma when worry and tiredness took over *slaps wrist*.

I’ve taken a day off from hospital visits today, D was (and still is) very unsettled and her mantra has been “Mumma, don’t leave me”.

We’d popped to my mums house today to get some washing done and she coped very well with the empty house as long as she knew where I was, it still felt strange that no-one was there.

Chores done, we were heading home and suddenly D said loudly;

“Oh dear, my cows are loose”.

Not the sort of average saying you’d expect from your child in the back seat.

It took me a few minutes to realise she was talking about Minecraft and it was definitely a #funee and a chance to have a little well-needed laugh.

Congrats to @ActuallyMummy for her win in the Brilliance In Blogging awards, definitely very well deserved.

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Wot So Funee?

Preserving memories with “from you to me”

I sat with two sisters earlier this week, they looked over photos that one of them hadn’t seen before and they tried to work out between themselves who the subjects were and the circumstances.

It was bitter-sweet as both sisters had never known their maternal grandmother, she had died during childbirth, a week after the end of World War 1. Such an event had subsequently effected the surviving family and generations following that. They had never seen a photo of their maternal grandmother but presumed they had finally found a picture, an old greying picture showing her face.

There were so many unanswered questions, partly because their parents were long dead and partly because of circumstances and having lived through World War 2, their parents did not want to revisit painful memories.

Genealogy is something I am very interested in, simply because so little is known about my great-grandparents and their forefathers.

We are so lucky in this age of disclosure, social media and blogging. My children will have a permanent memento of their childhood, our wishes and hopes for them.

I was offered the chance to look through some journals produced by fromyoutome.com and found them to be a very useful tool in preparing memories for our children, and, hopefully in time, their children.

I was sent three journals to review, three wonderful hard-backed journals, full of questions and opportunities to find out about memories and experiences:

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The first one we’ve looked at is Kicking off Memories:

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Here’s what the website says:

Do you have a friend or member of your family who is mad about football?

Are they always telling you great stories about the games they have watched or the goals they have seen scored? Do they always have an opinion on the team that was picked or referees decision? Do you know why they support the teams they do or why they dislike others? What about the best goal that they scored themselves… have they told you the details and how did they celebrate scoring?

This is the gift you give … and then get it returned with an amazing collection of footballing experiences. Glorious goal celebrations, tears of joy and pain, and the drowning of sorrows will be enjoyably retold and shared.

Priced at £12.99, this is the perfect for the football fan in your life (ideal for Mr Bluecrisps!). Packed with questions like:
Who introduced you to football?
Which goals that you have seen scored would be in your top 10?
And
When having a “kick-around”, what have been some of the items you’ve used as goal posts?

T is really looking forward to reading his dad’s responses to these questions and I think it will prompt a few giggles and some great conversation. It’s something that T will be able to share with his children in time too.

Another one was Our Story for my daughter:

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Here’s the website details:

Our Story will inspire you to capture the unique story of you and your daughter. Allow an enjoyable hour or two once a year to complete your journal – a great opportunity to reflect on your remarkable relationship.

Our Story helps you to record your amazing family experiences and unrepeatable moments – the growth development and personality of your daughter, your time together and your emotional journey – your hopes and dreams, the ups and downs and, above all, the incredible mother-daughter bond.

On your daughter’s 18th birthday she will receive this beautiful hand-written story, a priceless record of years together to be shared and treasured forever.

Priced at £19.99, it has a lovely illustrated cover, with the drawings carried on throughout the book, a perfect memento to complete and present to a daughter when she reaches 18.

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And lastly, we’ve looked at Dear Dad, from you to me:

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Here’s the website details:

Everyone has a story to tell… and have you ever wondered just how well you really know your Dad? Life is a fascinating journey and some aspects are often shared with others, however most stories and moments are never recorded.

This Journal is full of around 60 wonderful questions carefully designed to inspire every father to tell his personal story.

Celebrate your Dad’s amazing story and give him the opportunity to find that ‘book’ within him … and provide a priceless collection of experiences and memories to be treasured.

Priced at £12.99, this is available in the sketch design cover – as above – or a more traditional family tree cover. It is full of wonderfully original questions such as:

Who was your best friend as a teenager..and why?
Did you have an idol when you were young, tell me yours and why
What was my nickname before I was born or when I was young
.

Lovely questions that, again, are going to be fun to complete and thought-provoking.

The journals can all be personalised with photos and names, please allow ten working days. A lovely idea for a special birthday or anniversary, click here for details.

For the two sisters I sat with – my mum and my aunt – so many potential memories have been lost in time, with these journals I can ensure the same doesn’t happen for the Bluecrisps family.

Disclaimer: we were sent 3 journals for the purpose of this review, my thoughts and words are my own.

It wasn’t meant to be

A month ago I was practically burbling over with excitement:

D was a day away from celebrating her birthday, a very exciting time for her as she’d never really recognised birthdays up until the last couple of years.

And I was shortlisted in the Brilliance in Blogging awards, something which I felt very humbled about. I don’t go by stats and traffic and blog for the enjoyment and awareness-raising. The spam and nasty comments are a downside but there’s a delete button for a reason.

Two days later, everything changed.

I wasn’t a finalist in the awards. I felt bitterly disappointed but felt I’d let everyone down who may have voted, who may read my blog, I felt I’d let down my children. T, in particular, was very proud of me and wondered what a trophy would look like, he decided it would be fingers tapping on a phone screen – bless him!

I have to admit that I cried and felt a bit sorry for myself, that I wasn’t doing it “right”, that I wasn’t in the blogging cliche that seems to exist. I felt like the chubby girl chosen last in PE, except I wasn’t chosen.

I felt sad that I wouldn’t be attending the ceremony, I hadn’t been organised enough to get a ticket to BritMums Live and it was too late.

Lovely Kate, who writes for BritMums ran a competition to give away a ticket and I decided to enter, fingers crossing.

Another day later and my world as I know it, turned upside down, back to front and inside out.

Suddenly the ceremony didn’t matter anymore, the thought that I wouldn’t be going paled into insignificance.

My mum, who’d been showing the symptoms for years, was diagnosed with kidney cancer and neither radiotherapy, chemotherapy or an operation were an option. The consultants were not prepared to perform a high-risk operation.

Focuses change when news like this reaches your family, they have to.

I definitely won’t be going anywhere far away from a hospital in the next few days.

Last week, in a dramatic u-turn, they agreed to operate on my mum, she (assuming there is a bed) has the very high-risk operation tomorrow.

There are very mixed feelings going around my head, this operation will either prolong her life or end it suddenly tomorrow, there are no guarantees with anything.

I could be doing the school run later and be hit by a bus – I sincerely hope not! – but in this situation, everyone that needs to know is aware of tomorrow. She’s spoken to and told who she wants to tell, she’s seen who she wants to see.

It will be a case of waiting and hoping.

Obviously had I been a finalist in the Brilliance in Blogging awards, I would have had a decision to make as to whether I attended – it would have been a no-brainer, I wouldn’t have.

So I’m grateful that the decision was made for me, both by the BritMums judges and Kate, her ticket went to a very deserving mummy blogger.

Next year though, I’ll be there with bells on! I just need to get through the next few days/weeks/months first.

Fingers tightly crossed.

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Daaaad! A #Funee post

Wot So Funee?

I’m joining in today with actuallymummy.co.uk with another Funee.

As I’ve said before, we always make sure we laugh with D, never at her.

She does say the funniest things and, as seems to be the norm, it’s directed at Mr Bluecrisps, my Hubbie and her dad.

D has been on very good form this morning, she bounced happily into our room this morning and greeted Hubbie with “Happy day before Fathers Day”!
Both her and T have made some lovely items at school this week (I can’t say anymore because he reads stalks my blog) but he will love them tomorrow.

She had some brekkie (her usual) and then decided to play Bobo Explores Light on her I pad.

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She turned and said to Hubbie “I’m going to play Bobo now, you know, the game you’re not very good at!”

Said with a definite giggle, harsh but very true, Mr Bluecrisps is not I pad-friendly!

Joining the Kurio Family Blogger group

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There’s a new little badge in my side-bar today, just like the one above. One I’m very pleased to include.

Kurio have invited us to join their Family Blogger panel and over the next few months we’ll be testing out a new-sized product for them.

This one in fact:

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A Kurio 4S Touch – click on the link for more details.

If you haven’t heard of a Kurio before, here’s what has already been said about the 7″ version:

The Kurio 7 Tablet is a breakthrough multimedia entertainment device designed for both children and parents. The full-featured tablet has a high-resolution, ultra-responsive 7″ touch screen, a built-in mic, Wi-Fi and Flash 11 support, an HD video player, a music player, an e-reader, front and rear-facing cameras, HDMI and USB connections (HDMI cable not included) and 4 GB of internal memory.

The tablet comes packed with preloaded kids’ content, including popular apps, e-books, educational material and interactive activities, and offers access to the Kurio marketplace. Advanced Web filtering, block and safe lists and the easy-to-use, password-protected Parental Area ensure content is appropriate for the whole family, and the included drop-safe bumper keeps the Kurio safe even in kids’ hands.

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Obviously we’re going to be testing and giving our views on a smaller version but the positives that stand out for me (as a parent) are the parental controls and the pre-loaded content. Safety is a must for our children in a ever-intrusive wifi environment.

Needless to say, we’ll be reporting back on what we all think over the next few months.

Letting the guilt out

I’ve decided to join in with a Parental Guilt linky with @mrboosmum to offload a few guilt-trip moments that have been burbling around. It’s something that is ever present with parenting, I wonder if it ever leaves us?

What is guilt?

Here’s a definition:
* the fact of having committed a specified or implied offence or crime:
it is the duty of the prosecution to prove the prisoner’s guilt

*a feeling of having committed wrong or failed in an obligation:
he remembered with sudden guilt the letter from his mother that he had not yet read

I first became a parent just over 19 years ago and whilst I haven’t “committed a specified or implied offence or crime”, I can empathise totally with the “feeling of having committed wrong or failed in an obligation”.

Boy, does that feeling increase when your children are diagnosed with special needs. Even though I believe 100% that my children’s autism is caused by genetics, that doesn’t stop the guilt – after all, they’re MY genetics.

(Looking back I can see definite traits in my father)

But other factors may have played a part too:

I was commuting to London whilst pregnant with T, long days, early starts and I would end up trying to catch up with emails at the weekend, at the same time as planning a wedding (in Jersey) and running a home. I always remember one “gentleman” shoving past me and ramming his briefcase past my visibly pregnant belly. Of course, T was cushioned but it didn’t stop me worrying until the next check-up.

Six days before D was born, I fell up our back steps, landing on my tummy. We rushed to the maternity ward and were monitored. D’s heart rate was very very high and for a while, unless she calmed, there was a very real possibility of an emergency c-section. Could that have affected her brain whilst inside me? Is that why she was diagnosed at the “severe” end whilst T is high-functioning?

Speaking of T, it was not until D was diagnosed and following a greater understanding of the spectrum, that we realised/accepted that T had traits. Had had from a very early age. Some affecting his diet, his routine, his life.

Yet, I “sat on the fence” until last Christmas, not wanting to take it further. Tears of relief when he was diagnosed in April, I thought we’d be told we were imagining it and rubbish parents.

Which leads me onto the most rubbishy-rubbish bit: I couldn’t produce milk for any of my children, don’t know why. I felt a failure, unnatural. It just didn’t happen. My (bigger-chested) sisters were the proverbial milk-machines following their babies so, why not me? Even though I’d done the home-births, I couldn’t face the NCT classes with a changing bag of bottles.

D loved to drink milk and still does occasionally. Plain milk and plain water. She would always ask for a bottle after nursery as they wouldn’t let her use a bottle. She wasn’t diagnosed then, they went by their rules, insisting that she drink from a cup – she didn’t have the control to hold one at that time – and join in with unstructured play.

She couldn’t cope with the mainstream environment, it was too noisy, too busy. She couldn’t tell me at the time how she felt, she does sometimes now. Severe guilt that she went through that but, until she was statemented, we couldn’t get her into a special needs school. The result was a happier child from the very first day.

I try not to dwell in the past or think too far ahead. There’s no point. I look at grandparents pushing their buggies around proudly and wonder if I’ll ever be doing that, will our children grow up and leave home, establish relationships, become independent? I don’t know but I feel guilty for wondering.

I DO know something though…blogging is very therapeutic.

Then I worry that I’m doing it too much/not enough/could be doing more for awareness and acceptance of autism/wishing I’d got further than shortlisting in the BiBs/not liking the (necessary) self-promotion but hoping that every post will help society accept my beautiful daughter and handsome son, who are reliant on me, their Mumma to get the message out there.