Manchester-My city

IMG_0865This morning I awoke to the news that a bomb had gone off after a concert at the MEN.  A concert attended by children and tweens who make up a lot of the fanbase.  22 dead including children.  Many more in hospital.  Emergency services did a grand job, as did the people of Manchester, opening doors to those stranded, taxis offering free rides home, even taxi drivers from Liverpool came to help.  It makes me proud to be a Mancunian, seeing the response to such a disaster.  The sharing of those missing on social media makes me choke back tears, how awful to not know where your loved one is.  I am a mum and not being able to get in touch with my child after that would drive me insane and break my heart.  I know it’s only clicking “share” but it shows that people do care and want to help even in a small way.

I don’t understand how attacking civilians is ever justified.  How would that help people rally to your cause?  How can you think that killing children and innocents will give you a pass into heaven? It makes no sense.

I remember the 80’s when my city of Manchester was hit by the IRA.  We rebuilt, we came together and we can not be defeated.  I was watching an interview with a taxi driver on the news and he said “we’re like glue, we stick together, WE’RE Manchester” and we are.

Obviously there are grieving families out there today, never thinking their loved one would not be coming home from a concert.  My heart bleeds for them and I pray they have the strength to get through this- I don’t know how you “get through” something like this but I hope they know how much love and support is there for them.  And it’s not just from us- it’s the whole country and the world.  I remember watching the aftermath of the London stabbing just a while ago and seeing how the world came together to support everyone involved.  It gives me faith that we are still human and our differences do not matter when it comes to something on this scale- humanity wins.

Our Arndale centre has just been evacuated, a bomb threat.  My aunt works in town and I’ve asked her to come home.  Stupid really to ask a northerner to leave- she’s more stubborn than me!  My daughters friend lost someone last night.  I’ve spoken to her, she’s in shock and they are still trying to get in touch with others who were there.

Our prayers are with the families of everyone involved and our thanks go to everyone who, without knowing if it was over, went to the aid of so many in need.  Bravery comes in many guises and are often never acknowledged.  The people of Manchester showed once again how brave and selfless we really can be.

I just hope and pray that this is the last time this happens and the world works together to stop this.  We can’t allow this to divide our communities further, we can’t look at our neighbours with suspicion.  We need to stand together against these people who use whatever they can as an excuse to murder.  Standing together regardless of class, creed or colour will show them they can’t divide and conquer.  They can not win.

 

 

Bing Bunny is Banned!

IMG_0497Ok so that’s like a headline you get in the tabloids, he’s not banned totally, just the DVD’s.  We have noticed that Oliver’s speech has improved recently- not chatting in a conversation way but when he has been playing he has been jabbering to himself using more words than his usual noises.  Playing in the sandpit we’d build a castle then he’d put a flag on it then fall on it and say “oh Pando!” from the episode where Pando falls onto Bings giant sandcastle.  When playing with his Bing toys they would do things rather than just standing in a line.

However things took a different turn when he started throwing books into the bath or washing up water (whatever was most convenient at the time), started widdling on the floor and taking things off his younger sister-just for example.  We watched the swing episode together and then watched others as the swing episode showed us something we didn’t expect – the naughty person was never told off and in fact his behaviour was not even slightly discouraged. The basic premise is that Bing is on the swing, Pando comes and wants a turn so they agree that after counting to ten Pando can have a turn then it’s Bings turn again.  However the little miscreant Pando does not stick to the deal and starts messing about and the worst thing is that his minder, Padget, enables his behaviour.  SHE CARRIES ON PUSHING HIM!  She carries on pushing him whilst saying “come on it’s Bing’s turn”.  Why?  Just stop pushing him and tell him to get off.  But wait- it gets worse.  Bing is by this time totally fed up so runs to the swing in the hopes of pushing Pando off and gets hit with the swing.  Bing then gets a lecture on HIS behaviour! He shouldn’t have tried to seek justice, but no one tells Pando off or tells Padget she needs to sort Pando out!

Anyway watching more episodes (I’m all Binged out now) no one ever gets told off.  It’s always that’s ok, never mind, don’t worry about it.  Now I’m sorry but where are the consequences for their actions? Even at nursery my kids have a thinking board.  If they hurt someone or do something not nice, they get their name on the thinking board and told why it’s there.  And they are a similar age to the Bing characters.  Peppa Pig gets told off if she’s mean.  Ben gets mad at Holly when she upsets him and she apologises.  Why does Flop not tell Bing off for ruining Sula’s mural? Ok there are some good points too like don’t mess with geese which is a valuable life lesson but unfortunately my son has decided to pick out all the wrong behaviours so for now there’ll be no more watching Bing!  He can keep the toys and we’ll try again when he’s a bit older for the dvd’s- the books he chose to “bath” are dead- maybe we should put them in the bye bye box ;-p

 

My husband’s struggle

So when Oliver was diagnosed my husband, Leon was very angry.  Understandably so.  This was his first child (my older two are just mine) and he had hopes and dreams for him.  I warned him after the diagnosis that there wasn’t much else the hospital could do for us but he had faith that they would be able to do something.  We had speech therapy in place, a yearly “tick the box” appointment at the hospital, a GP, the EHC was starting and there was us.  So after our follow up appointment after the diagnosis he expected a plan of action.  He was disappointed- very disappointed.  He expected our marvellous NHS to be able to do something.  I had told him what it was like when Max was going through it and I think he expected more to have been done in 20 years.  It didn’t seem the right time to say “I told you so”, and we do still think the NHS is marvellous its just if there is no breakthrough there is no treatment – well no miracle treatment.

I tried to tell him that it had improved, he’d been diagnosed earlier, he’d got support in place at nursery school (5 hours) and he had speech therapy.  There is no magic pill, there is no quick fix.  It’s a slow but hopefully steady move forward with a lot of hard work by everyone involved mainly me being his primary carer and stay at home mum.  He’s still angry now, 3 years on.  I wonder if he blames me, I’ve asked him and of course he denies it but I wonder if he does.  We feel better if  there/s someone or something to blame, we can focus on that.

I don’t know how to help. He isn’t a talker, he won’t phone the helpline, he won’t go to the group that Family Point have set up for post diagnosis, he won’t talk to me.  The way he acts is like if he ignores it and treats Oliver like he’s neuro typical (NT for future reference) then by sheer force of will he will make it so.  Sometimes Oliver is an arse- no doubt about it, but a lot of the time it’s frustration or lack of understanding or overload on Oliver’s part.  I’ve told him to make his sentences short and to the point, one command at a time but he doesn’t do it.  I think if he accepted that it’s not just contrariness on Oliver’s part and that he tries so hard but just can’t be or do what daddy wants he would get a lot more joy out of family life and be more relaxed, which would be good for everyone especially Leon.

Now I don’t want to paint Leon as a bad man, he isn’t.  He is just struggling so much with this and I feel helpless.  We’ve both been through quite a lot in our individual lives since we met, and he has had his own struggles to deal with, friends, family and moving etc.  I just don’t want him to look back to this time and realise how much he has missed.  I’ve started saying when things are not going well “however hard this is for us, imagine how hard it is for our boys.  We struggle making sense of the world and we’re NT and can talk.  Imagine having no voice” it helps me too.  The boys don’t choose to be that way.  We can choose how we deal with it.  Accepting autism doesn’t mean rolling over and doing nothing.  It means accepting that we have to travel a different path, and different is always interesting.  We wouldn’t apologise for asking people to make allowances for other disabilities, so why should we apologise for our kids having autism?  It’s not bad behaviour, we aren’t bad parents, we are doing what we can everyday to make the world more accepting on both sides.

I love my husband, I would love to be able to help him be happier.  He has just got a new job which should be more interesting for him, it means the odd night away from home, which will give him a break from us, probably a full nights sleep but hopefully miss us all too.  And all our quirks!

I’m not perfect, I have bad days too.  I have Leon to talk to though so it makes it a little easier this time around. I had no one with Max, I know how lonely it can be dealing with it on your own. I just want Leon to know he doesn’t have to be alone through this. I’m right here to give him whatever support I can.

Diagnosis

With my older son, Max, the diagnosis took three and a half years so by the end of it I was relieved to know what he had, had an actual name and he could now be statemented and finally start school.  He was five when he was finally diagnosed with “classic autism”.  From 18 months his speech had disappeared, he was nowhere near toilet trained, he wasn’t sleeping more than 2 hours a night and his behaviours were becoming more odd.  He’d missed the start of school, they’d withdrawn his place after her wasn’t toilet trained, so he was on an assessment part time placement at a special school.  They ended up taking him full time once we had a diagnosis.

Then started the joys of IEP’s and IDLP’s and a lot of other initials.  No one seemed to know too much about the autistic spectrum specifically.  Pecs were introduced once he was well into the school and they were a “new system”, we used Makaton (like Mr Tumble) and he finally got speech therapy.  Oh and a free bus pass.  The joys of the DLA forms started, and the appeals for the said DLA forms.  His sister was only a year older and she hadn’t really known him any differently so she accepted him just the way he was.  She stood up for him, they got up to so much mischief together and they were siblings who somehow communicated and built a relationship.  She was his best friend.

When my other son started with speech problems I noticed earlier and phoned the GP not caring if I sounded like a neurotic mother.  Fortunately my GP are a family practice and have been with me since before my eldest was born.  They knew us- I know it’s rare these days to have this continuity of care and I do feel blessed.  The doctor who had been there for us through Max’s diagnosis now handed the mantle on to his son and his son’s wife.  She saw Oliver the day after I’d phoned and had a telephone consultation, and immediately put in a request for him to be seen at the paediatric hospital department.  He was seen, assessed with the Griffiths assessment, then had a full team assessment, from physio, to occupational therapy to an opthamologist.

As naïve as it sounds I originally phoned the GP concerned with his speech.  I thought a bit of speech therapy would be recommended and we’d go from there.  Even on the results appointment when it was with the top dog instead of a minion it still never registered, the words Autistic Spectrum Disorder came out of her mouth and I just cried.  How?  How could it be ASD again?  I’d done that and was still doing it everyday, I couldn’t do it with two of them.  It wasn’t fair!  I know that sounds childish but it isn’t fair.  Apparently everyone else in the family suspected, I’d just not let the idea settle in my head.  No way could it be that again.  I felt like I’d lost another son to ASD, I felt like I must have done something wrong.  His birth was not easy and they’d never diagnosed or treated me for the pre eclampsia they finally admitted I had once we’d both nearly dies in childbirth but I carried him and I should have made them do something so he didn’t have such a traumatic start which may have affected his brain function causing the autism.  I think as a parent you always blame yourself, I do.

With Oliver though, speech therapy was in place as soon as he was under the paediatrician and other help was in place well before diagnosis, so things have moved on some, it’s still a fight but now we kind of know what we are fighting for-any help for our sons.

After the first loss

So I was kept in overnight after the operation. For my birthday tea I had some iced water and a mint.

They had prescribed medication so I was still in bed the next day waiting for the drug round. The lovely surgeon called by and explained the procedure, asked how I was and offered to show me pictures. I asked to see them, then he put them back in my file. He told me the “tissue” had gone to pathology, considering the subject he was as sensitive as he could be. He was actually the nicest person I met during it all. He then went on to explain that the human body is very clever and that over time it was more likely that my left ovary would release eggs as my body would realise  it was pointless using the right side. I don’t know how true this is and I was in my late 30’s anyway so it wasn’t really going to affect me. I was done. I was heartbroken. I wasn’t going to try again.

The psychological impact was that I no longer felt like a proper woman. I couldn’t keep hold of a baby, I’d lost half my reproductive system I felt like a failure. No one understood although looking back I’m more forgiving, what do you say to someone who has been through that. “Focus on the kids you’ve got” ” some people don’t get any” “you can always try again”.

All I had to show that she’d existed was three little scars, they’d done a laparoscopy, and gone in through my c section scar and a positive pregnancy test which is in a little bag with my pregnancy notes. I couldn’t talk about it. I know people have different views on what constitutes a proper loss but I don’t judge them on their opinion. As soon as I see that positive on the wee stick I’m planning. Up to that point I never planned on not having a baby in my arms a few months later.

I also think that because so much has happened over such a short time I never get a chance to process anything before the next disaster is upon me. This year I decided to start trying to make sense and come to terms with things. It may take longer than a year but I need to find some sense somewhere or I’m going to lose myself in what if’s and why’s.

I think the ectopic pregnancy was one of the harshest things I’ve gone through. To put it into perspective for my husband, Leon, I told him that. He knows so much about my life and that statement let him know just how bad it was. “Really? Even worse than……” yes dear, even worse than all that other crap.

The first loss

I think even in todays enlightened age there are still taboo subjects we don’t discuss in polite society.   Death, feelings and mental health are just three I can think of off the top of my head. By not talking about things that affect us they stay bottled up until something gives.  Some things are too hard to talk about, sometimes we don’t have the words.  Sometimes we think no one will understand so we don’t bother even starting the conversation.  I have tried talking about this before (just a little) but I get resentful when I end up having to be the comforter instead of the comfortee.

April 2013.  We had just moved house, we had a 1 year old son and I was pregnant with my fourth.  Despite the house being filled with boxes and being all higgledy piggeldy we still managed to throw Oliver a decent first birthday bash with a cake that I had managed to turn out in time despite the chaos.  Things were looking up.

I’d just got my appointment through for my 12 week scan a couple of weeks away.  5th May I woke up feeling “funny”.  I mentioned I had a bit of abdominal pain to my husband but with the moving and a very robust 1 year old, I thought it was probably just that.  By lunch time I had shoulder pain and at dinner I couldn’t eat for feeling sick.  We decided to go to bed but lying down was painful and I couldn’t breathe.  I asked my husband to take me to A&E – he was convinced it was just muscle pain but after rolling his eyes he gave in and took me.

Our local hospital no longer has maternity services so they sent me to the next closest one.  The nurse was reassuring, the pregnancy test was showing positive, I was upright and just in a little pain and “the scan tomorrow will tell us more”.  They admitted me anyway –  it was about 4am by this point and he went home to sleep and check on the kids, after promising me everything was going to be ok. (our eldest was watching them- she still lived at home then)

Bank holiday Monday- no scan.  The doctor that came round said it was probably appendicitis.  I tried telling her it didn’t feel like my other pregnancies and that it felt wrong but she talked to her minions and told them to get a consult for appendix.  They refused to come down until a scan was done as ectopic seemed more likely.  Knowing they weren’t going to do anything I discharged myself and went home with a promise to go for a scan the next day at my local hospital.

7th May-incidentally my birthday.  Went for the scan, couldn’t see anything in the womb, didn’t bother scanning the tubes. “probable ectopic” was what she wrote on her little form.  A lovely nurse explained what was likely, what would happen next and promised to not let my car get clamped as I wasn’t allowed to drive myself to the next hospital for the procedure.  I rang my husband who had just started a new job and told him we couldn’t afford to lose his job so to come see me after work.  I was taken to A&E where they put a canular in “just in case” and I went in an ambulance to the hospital that had “appendixed” me the day before.  From when I arrived it was all stations go…..Mr Consultant consulting and taking another history, surgeon asking his questions, nurse measuring my calves for bed socks.  Hubby had been sent home from work and was there to tie my gown on (wrongly) a quick hug and I was in surgery.

And that was it.  One day I was convincing Leon that Virginia was a brilliant name for our daughter, and a few hours later she was gone.  There was no time to process anything.  Everyone had been so reassuring and he had promised me that it was going to be ok that I thought maybe it would be.  It really wasn’t though.  I told him to never make me another promise as I would never believe him again.

Time for a break

Easter Sunday

So another adventure this evening!  We’d had a lovely day in the main, no major meltdowns, no fighting with the youngest 2 and a lovely Sunday dinner cooked by the husband.  Kids went to bed without too much hassle – Popples (aged 2) had finally had her bedroom babygate removed and was feeling very grown up so went to bed without her usual “I need more hugs” performance.

So while they were in bed we decided to sort out their DVD’s – putting them in the right boxes and getting rid of the scratched ones without them being fished out of the bin.  Then I heard a dripping noise and I knew it was not going to be good.  Sure enough I ran up the stairs to see the bathroom sink over flowing and the bath toys floating on the floor.  Yep our four year old had decided to get himself a drink of water and left the tap on!  He was sat in bed looking very happy with having got his own drink of water.

All the towels now in the washing machine, we’re hoping the plaster on the kitchen ceiling dries out but……..well he got his own drink!