Baby loss awareness week…

Ended today with the Wave of Light at 7 pm. I am currently lay in bed next to Oliver who kept trying to blow my candle out.

1 in 4 pregnancies in the uk end in loss during pregnancy or birth. And yet we don’t talk about it. Why? For me it’s because I have no words that I can say to those close to me. There’s no words they can say to me. There’s nothing that can make it feel any better really, except maybe time. I just don’t think they’d understand the pain and grief. Or maybe I do them a disservice and I don’t talk because I’m scared of going back to the dark thoughts I had then, saying it out loud would be so painful, I don’t know if I can do that.

Anyway Twitter was awash tonight with the Wave of Light. So many families going through the same things. Some were just candles, some had names, some had poems and some were written by people who haven’t experienced baby loss but wanted to show support. It made me feel less alone. I lit my candle for longer than the requested hour and joined the Twitter wave. I found everything I read made me feel so sorry for these people, their stories are heartbreaking. Much worse than mine.

I think we need to stop the silence around baby loss. This week of awareness has certainly made me aware of how isolated people become. How no one knows what to say so say nothing. How people decide how long you can grieve for or tell you it’s nothing to grieve over. Everyone is different and it’s not something everyone can get over.

Don’t ignore it if it happens to someone you know. Don’t say they can try again or “these things happen for a reason”. Use the baby’s name if they have one. Ask how dad is feeling too, he often gets overlooked. Just be there, even if you feel you aren’t doing anything helpful, it will be appreciated- so many people pretend it never happened or disappear.

If anyone reading this has experienced loss of a baby there are plenty of helplines out there and forums where you can get support. You aren’t alone. Just check out #WaveofLight on twitter and you’ll see just how many people are in the same boat as you, trying to stay afloat. I wish for you to find peace.

In memory of Virginia and Edmund, my angel babies.

P.S Please forgive the rambling nature of this post

Xx

“A thorough investigation”

I spoke about Max and losing his placement in “How can people be so mean” and this is the update.  We were invited to a meeting to be given the results of the investigation into the allegations made about staff behaviour.  They claim there was a thorough investigation and there is no case to answer.  “We can’t go into specifics about people but we found it was a disgruntled employee who we have let go and basically a case of revenge/sour grapes.  Max is welcome to come back”

Their timeline of events was different to mine, when I pointed this out they said I had it wrong.  I asked if the main mean person had been let go.  No he hadn’t.  There was no evidence against him except he said/she said and if we sent Max back then he would have no contact with this man.  I asked about the screen shots I received with his mobile number on it and asked if they’d called the number.  “That isn’t evidence, anyone can doctor a screenshot”, well I can’t.  Also if the man was innocent why would Max have to be kept away?  I asked why nothing had been done when his 1-to-1 first mentioned something to the manager and got “it was only after we let her go that concerns were raised”.  We argued the time line, but it was no use, they wouldn’t budge.

We told of how his activity programme had changed and asked why.  We told of his change of behaviour.  “We have new management” so the old manager who was really good with the clients and keeping staff in line was now being blamed because of his lack of office skills, the new managers had to sort all that out and it “may” have affected services.  I told them that the new manager was the same woman who had been with us from the start, so she knew us and it made no sense to change his activity. “Well I’ve known her a long time, she has been trying to deal with a lot as she hasn’t been a manager before”- yes and? She gets a promotion and decides my sons tailored programme is no good without discussing it with me? The programme she helped tailor!

All staff members have been interviewed and been given a leaflet on respect and dignity.  All clients have been interviewed and no one else has a problem.  What about the people like Max with no voice?  The parent was interviewed to see if anything had been “said” at home.  I asked how they were supposed to say anything when they couldn’t talk, what method was used? A sad/happy board? “we can’t go into details”.

I saw a change in behaviour in Max and thankfully his 1-to-1 told me what was going on, so I could intervene.  My gut tells me something went on, you get a feeling about people, and it’s not scientific and sometimes it’s wrong, but not often I don’t think.  For her whistleblowing she has lost her job, been badmouthed all over and when I spoke to her last she had had a social worker visit her as they had received “an anonymous phone call” about her and her kids.  She is seeking legal advice.

I just wonder when I am going to hear about another incident at this place, or will they be more subtle in future.  One thing is for sure, they had their own agenda and have fulfilled it.  No case to answer.  They’ve skewed things so she has no credibility, and I look like an overprotective drama queen mother.  They’ve lost over £18,000 in fees plus other monies they could claim as he is classed as severely disabled.  The man managing the meeting said Max would be welcomed back with open arms, he brings a lot of money with him.

To me, and I know I’m not impartial, it feels like a whitewash.  Max wasn’t happy.  I’ll never know exactly what went on, I only have screen shots of conversations and my gut to go on, but I know something went on.  He won’t be going back.  My social worker is trying to find something else for him, we will see how that goes.  In the meantime, we have time to get him back to his happy self and rebuild his self esteem.

 

xx

 

Poo!

Time to talk about poo.  We’ve had a few incidents recently from Olly, I had a lot from Max but he was younger so I thought Oliver may have bypassed this phase.

When Max was younger he used to smear at bedtime.  He would play in his poo- decorating the walls and floor.  Obviously I can’t watch them 24 hours a day, and I was told that we needed to get into a bedtime routine in the hopes that he would understand and sleep.  He didn’t.  He used to sleep 2 hours a night.  I would put him in babygrows as he couldn’t undo poppers.  When that didn’t work I put him in pyjamas with a vest over the top that fastened with poppers (press studs) the I tried buttons and zips.  He still found a way to get into his poo and paint which resulted in me stripping his room and leaving him with painted walls and tiles on the floor which were moppable.  Mattress cover, etc to make clean up easier.  I would go up and down the stairs to check every ten minutes.  With his language being limited after a few tries with various words we ended up with “dirty, don’t touch” and so now at 23 he still won’t wipe his bum and if you try to force the issue he says “dirty, don’t touch”.  We are working on this.

Oliver – well he has been fascinated by his bodily functions a while but his last episode was a while ago and that was doing a wee in various receptacles and emptying it in the toilet.  The only poo incident we had was where he slammed his door and couldn’t open it so by the time I had gone up to check on him he had used the volcano out of the dinosaur set as his toilet.  Genius!

Oliver has stopped sleeping in his room again- Christmas changes threw him so he has been camping at the top of the stairs.  The toilet is 3 paces away from where he lies and plays.  One evening his dad went to the bottom of the stairs to look and make sure he wasn’t paddling in the toilet (oh yes that’s fun) he said he could smell poo.  He goes up and I grab clothes and cleaner.  Upstairs he had re-enacted the episode where Bing stands in dog poo, only he had substituted his poo for dog poo and all of Bing’s friends had jumped in it too.  He tried to wipe his bum 2 nights later, couldn’t so wiped his hands on the wall of the landing.  Last night there was a poo at the top of the stairs.  He hadn’t even attempted the toilet.  When I asked what it was, Oliver shouted “Poo!” in a gleeful tone.  I said “where does poo go?” and he pointed to the toilet.  So it’s not like he doesn’t know.  I’ve been told it’s quite common for this to happen, although no one agrees why.  We keep it low key, reinforce the toilet, and just clean it up with no recrimination. We don’t want to make it something he gets lots of attention for.  I carried his pyjamas down to the washing machine last night, carefully I thought, but not carefully enough!

I know kids find poo funny- my 3 year old thinks poo head is the best insult ever!  I don’t find it quite so funny when I’m scrubbing the carpet.  Although thinking about the Bing thing he did- well it does raise a smile.

 

xx

He’s not naughty! by Deborah Brownson

hes not naughty

I’ve been trying to find some help on how to explain to a 3 year old the complex world of autism.  She has 2 brothers on the spectrum and asks questions which I do try to deal with “why does Max wear ear things?” because noises hurt his ears so this makes them softer so he can listen without it hurting.  The questions keep coming and the word Autistic has been mentioned which resulted in the conversation taking a weird turn “stick? like stick man?  Is he going to get stolen by a dog and get lost?  I don’t want my brother to go”.

Anyway I came across this book “He’s not naughty” when I was doing some research.  A lot of the books I came across had scathing reviews and many of them were about aspergers where my boys are further up (or down?) the spectrum.  This book also mentions aspergers but is not focussed on it exclusively.  It’s about the issues that people on the spectrum face, the senses are broken down, strangers, behaviour, bullying, feelings etc.  and the trauma it causes them.  It is also beautifully illustrated so although the text may be a bit too much for my 3 year old, the pictures are good for starting discussion.  It’s easy reading and explains things simply, so is useful for anyone starting out on an autism journey, be that a family member, friends or teachers.

It’s written by a mum who lives with autism daily, not by a clinician and it’s very matter of fact.  It doesn’t gloss over anything, it just explains things from Jake’s point of view as told by his friend.  I don’t think my review has done it justice, it’s a beautiful book and I see my sons in the illustrations.  It takes a complex disorder and turns it into manageable chunks.  It’s listed as a children’s guide to autism, but I think it’s an all age guide to autism.  It’s overwhelming, and you get used to speaking in jargon and doctor-ese, this book has put me back on the track to explaining to all ages that He’s not naughty!

 

xx