When rejection starts to feel personal

We were offered short breaks support when Holly was very young. At first 1:1 and then later 2:1. Now it took me a couple of years to feel comfortable with this- well I say that but not sure I actually feel completely comfortable with it at all! I will never forget that feeling of leaving my vulnerable, autistic child with learning difficulties with a complete stranger!!! But over the years it’s got harder to keep up the intensive 1:1 full attention that Holly needs without becoming physically and mentally exhausted. So any help at all became very much appreciated.But over the years we have had many many carers. So many that I can see the signs that they’re going to leave or quit way before it happens now! The little gestures, the reactions to Hollys behaviour, the odd comments. I know it’s coming!! The “sorry but we are going to have to withdraw our service … we are no longer able to keep Holly or our staff safe … we don’t think our service is appropriate… etc … etc” I’ve heard all these phrases or similar for the last 10 years! Which ok I fully understand. Yes it’s bloody hard work! It’s relentless! It’s physically demanding and mentally demanding as you can’t let your guard down for a second! But having so many people quit or move on it does start to feel personal. And I have had thoughts like “Nobody wants her”, “Nobody cares about her”etc.

Now don’t get me wrong I admire anyone wanting to go into this line of work and we have met some absolutely amazing people/carers too who have moved on for other reasons, some I am honoured to call my friends. And I always say the good ones always pop up again! There are a few people that we have met several times in different places or under different guises. And some we still keep in touch with. ❤️ I personally think that generally carers are undervalued and most definitely underpaid! Lets face it… to look after Holly I think you sometimes need danger money! The people looking after Holly need to be specialists in certain areas – we know – you can’t just ask anyone to look after Holly. They need to have a certain personality, resilience, patience and a caring nature, they need learning disability and autism training as a minimum or it just doesn’t work (we know from Experience) And if you need 2:1 you can’t just expect anyone to just turn up. We know from experience that it has to be two people who already get on (or at least know each other!!) as Holly will sense the divide before they start!

Now we’ve struggled the last few years to get any carers at all. That’s how Holly ended up in full time residential care. That all went wrong and now she’s home again. Something else that didn’t work out.

What is really sad is that Holly makes attachments to some of these people so she mentions different peoples names mostly I think the ones that she liked or she misses and this also includes other children she’s got to know at respite. Occasionally we find a photo of a carer and she’ll say their name and then “momoger?” which means ‘tomorrow’ and then of course we have to explain that she won’t see them.

I think we’ve had that many rejections, refusals and let downs that I am now very wary of any help- carers, placements etc. And when we do get new carers or placement interests I can’t get my hopes up until I know they are definitely working or happening.

LATEST UPDATE – Good news! Holly has a new placement starting in a few weeks and even though I know this is the best thing for all of us and this is different placement , in the back of my mind I can’t help but think we’ve been here before and I feel anxious that it’s going to fall through again. I know I’ve also got to through all the emotions again like last time. (See link to previous blog at the end) But I have to be positive and believe it will work. The staff are lovely and are already working hard to get to know Holly and make it work. For Holly it’s the people who are important. She’s interested in them, she wants to get to know them. I suppose over the last 10 years all we’ve really wanted is people to accept, understand, get to know and just like Holly ❤️❤️❤️❤️

I’ll keep you all updated.

Previous blog My head’s a shed

So tired even my tired is tired… but the end is in sight!

I can honestly say I am exhausted! I feel like this weekend I am crawling to Monday! Could have something to do with the fact that Holly was up 3 times in the night – could have been the sound of the wind or some kind of pain? It’s always so hard to work out what is wrong with Holly as she can’t tell you – so it’s often guess work. I didn’t really sleep – too much on my mind and I am worrying about an upcoming event. Jasmine has a performance in London with one of her drama groups. We knew about this when Holly was still having overnight respite and booked it accordingly. But as you know things have changed so we are trying to find a way so that both of us can go. It maybe that one of us goes and the other stays at home with Holly. Trying to organise something as this is probably a once in a lifetime opportunity that we really both want to see.

I had a sales call the other day and when I answered the lady said “Oo you sound tired”… I replied politely “yes” and she then went on to try and lighten the mood by saying something about “a mother’s job is never done”… “you need to get a cuppa and put your feet up!” I replied with a “hmm” and thought ‘you have no idea! Feet up? Really?’ ‘ sound tired? Good job you can’t see what I look like!’ 😆😆😆

My tennis elbow is pretty painful too. I’m thinking of renaming it ‘wrestlers elbow’ because I haven’t touched a tennis racket for years and many times this week it’s felt very much like wrestling! 😆😆😆

We have had some good moments this week, some achievements – haircut for Holly, afternoon at the theatre and Jasmine has had fun being part of a dance festival. A huge Thank you to Katie for being taxi for the day! So thankful to all our friends for the help and messages of support. Also Holly has been very cuddly and affectionate and the house is still standing – which is always a bonus! It may be a bit chewed and wonky in places but I can live with that! 🙈🤣🙈🤣

Hair cut day!

Here’s Holly this week multi- tasking as she is often but actually still for a minute or two – that’s rare!

Days 4 and 5 – February Half Term 2020 – two very different days

Thursday ‘Daddy- Tim’ had a day off work. Yay help! Well it’s actually because we had an afternoon at the theatre planned. Planned since last year when Holly still had two nights a week overnight respite. Well since then things have changed (no overnight respite) We have had some help from some carers this week but the day before we didn’t feel confident leaving Holly for 5 hours with them. So we decided Tim would stay at home and Jasmine could take a friend. Thankfully her friend said yes and to be honest I think Jasmine enjoyed it more taking a friend especially as she persuaded me to take them for tea afterwards. It was nice to spend time with them and they had a great time.

And I would highly recommend this show. It is amazing! So a bit of a break thursday (which I desperately needed) as Friday was back to the intensive support.

Friday was Take 3 of the ‘ride in the car Mamma Mia sing a long with grandad to get ice cream’. I love how Holly says please or “pease”. Her favourite sayings this week being “more pease” and “I say pease”. Used a lot as she wanted to ‘sample’ everyone’s ice cream! 🤣🤣🤣

One the way home a drive through the park. I do love trees especially tree lined paths and roads. and had to stop to take a photo.Even in winter the trees look beautiful.

Then in the afternoon there were some meltdowns and destruction until it was Mums taxi time to take Jasmine out – which Holly doesn’t mind – riding in the car can be calming – she especially likes it if we see people that we know. ❤️❤️

Well we Made it to Friday evening- not much longer to back to school and back to routine. A rare moment here where Holly actually stayed still long enough for Poppy-dog to sit on her (and she only did that as she is licking food off her hands! 😆😆)

Day 3 – February half term 2020

Haircut day!

After last weeks revelation of the possible hair ball, today we attempted a really good trim!

Here’s the link incase you missed it Hair today, gone tomorrow… or is it?!

So I mentioned that Holly had self-styled her hair chewing it!

So today armed with chocolate biscuits, banana chips, carrots sticks and raw cauliflower we went for it. Luckily we have an amazing hairdresser who has known Holly her whole life and knows what she is like. We’ve tried lots of strategies over the years!! Today’s was to try and keep her sitting in the chair using food. This worked well and an interest in the hairdryer helped! This is a new fascination that she picked up at residential as pointed out in a previous blog, I rarely use a hairdryer! 😆😆😆 ( Holly, cats and hairdryers )

There’s was only a bit of grabbing of shampoo bottles and Holly spotted the “shower” as she called it but it actually went really well and it looks lovely. I think this photo shows that Holly likes it too.

A huge thank you to Lisa our hairdresser for a great, very speedy job (about 10 minutes) cutting Hollys hair. We are so pleased with it. And hopefully it will minimise the hair eating!! 🙈

So we’re half way through half term and have to say … I am exhausted! Physically exhausted and emotionally drained. Luckily got a bit of a break tomorrow 😍

Day 2 – February half term 2020

So it’s day 2 of half term! I was going to post last night but I fell asleep! 😆😆😆 Oops! Not a good start.

So briefly, yesterday started off well. We went for a drive in the car. Mamma Mia soundtrack on. Picked up Grandad. Ride through a local park and then on to the ice cream cafe. Perfect! Holly was very happy.

Home for some lunch. Grandad took Poppy-dog for a walk. Both love it!

Still all was good but then the afternoon went downhill! Let’s just say sometimes the help in the home is not always helpful and turns out to be more stressful than without it. So as soon as Holly went to bed I popped out for much needed supplies – tonic and vanilla slices!

Hence I then fell asleep! 🤣🤣🤣

Day 2 started off ok. An assessment home visit went ok I think – don’t want to say much as I don’t want to jinx it! This obviously had quite an unsettling effect on Holly as she had some major meltdowns for the hour afterwards. So after lunch it was car trip to the ice cream cafe part 2. With Mamma Mia soundtrack and Grandad of course! Another successful trip.

Then … a couple of hours respite. So… shopping trip to New Look for Jas and we actually had a coffee shop stop! Woohoo! Had two phone calls re Holly during all this but it was nice to have a break.

A mixed couple of days but on the plus side Grandad put the door handle back on!

Hmmm …. can you spot the error here? 🤣🤣🤣 Oh well, at least we can close it to lock it. We have bigger issues to deal with! 😆😆😆

Check on your friends ❤️💙

Its mental health Awareness week again and never has this been more important than in the last year. I actually think it’s made people be more aware of mental health, that it’s important to always be kind as you never know what exactly is going on in people’s lives.❤️

This is actually a blog that I wrote a few years ago but the information in it is still relevant for many, even if our lives have changed massively. It’s still so important to check on your friends.

It’s half term this week and I know many parents will be excited and have lots of plans for the days ahead. But ‘being a parent can be the hardest job in the world as well as the most rewarding’. It’s great seeing all the pictures on social media of friends having fabulous days out with their families. But it sometimes reinforces the things that some families can’t do. As the mum of a child with special needs I know it’s difficult to go out anywhere, the days are long, relentless and it’s hard going. Not only is it hard work but whats harder is the things you miss out on. If there’s a sibling it makes things even more difficult as you feel guilty for the things that they also miss out on. Now I’ve had 14 years of this so you could say I am an expert and to be honest I now know what to expect. Already in our house the destruction has begun – a broken light fitting, kindle screen, door handle pulled off and the half term week hasn’t even started!

But we will survive. I’m used to the destruction and mess for many years now.

In the past though I have struggled. There were days where I didn’t cope and all I wanted to do was walk out of the house and not come back! I have felt alone.

I felt like I couldn’t go out. It was too difficult to go anywhere with Holly. Too many bad experiences and even the special groups we went to there was never any other child like Holly – for starters they were mostly boys, the girls were few and mostly high functioning and all never had the aggressive attacking behaviour that we experienced. So we went out less and less and became more isolated. I have been at breaking point.

I wouldn’t have got through it all without my friends and family (and the odd vanilla slice and lots of gin! 😆😆😆)

So I guess what I’m trying to say is check on your friends this week and every week. Here’s a few things that helped me…

Send a text or message just to see how they’re doing. I found this a great distraction and it kept me in touch with people.
Phone to have a chat – about other things that are going on – I didn’t always want to talk about my issues it was good to find out what was going on in the real world!
Offer to take out the sibling – I am forever indebted to my family, friends and especially my fabulous neighbours who had Jasmine round for play dates, tea, sleep overs, trips out. 🥰
Pop round to see everything is ok. But NEVER judge the state of the house or the people in it (yep friends have popped round to be greeted by a naked child and/or disheveled parent all in an absolute tip!) Cake, wine or gin is always a good distraction.
Involve in a friends chat group. Even Though I sometimes didn’t join the chat it was great to read the banter 😆😆😆
Invites out – eventhough I had to decline a lot of events/days or nights out because I couldn’t just get a babysitter etc it was good to be invited. Please keep asking because one time I might be able make it.
Social media – I so wish it was around when Holly was younger. I have now realised that there are actually other parents with children with similar needs to mine! We are not alone!!! Sharing things with others in similar experiences is always good.
Social groups – I am lucky to be able to attend some groups (drama group, dance class, local friends of group) to ‘escape’, have a break and be normal, be me with some amazing supportive friends.

I will always be so very grateful for the support my friends and family give us. We are lucky to have that.

So check on your friends. And just be there to listen, never judge, but most of all just be there!

And if ever you feel so desperate you need to talk there is always someone at the end of the phone … Samaritans

Take care of yourselves and each other. ❤️💙

Hair today, gone tomorrow… or is it?

So over the years we’ve learned to expect the unexpected and with all the things we’ve experienced there are very few things that surprise or shock me! But this weeks revelation… I was not expecting!

Since Christmas Holly has been doing huge burps and bringing up a little bit of sick in her mouth. If you’re lucky she swallows it if you’re not and she laughs you get a vomit shower!! 🤢🤮 (Sorry!)

On Monday morning we had an appointment with the paediatrician so we mentioned this. We commented that Holly eats a lot and very fast and we were thinking it could be reflux or something. She asked if she also ate non food items. “Well erm yes! Paper, bits of plastic, wooden lolly sticks, buttons, clothes, her own hair…. the last one was a concern and the doctor suggested that that may be the problem and Holly has a hair ball!! 🙈😱

Now Holly has been biting and eating her hair for about 5 months. In fact she has self styled her hair into a lovely layered wavy style -very much like a ‘1970s flicky Farrah Fawcett style!’ Looks lovely!

So IF it’s a hair ball it’s going to be a nightmare! First she would need a scan to check. Any medical procedure is extremely difficult with Holly especially those which require you to keep still!! Then, as hair does not decompose, it would have to be surgically removed! 😱😱😱 Just the thought of this fills me with absolute dread!! Nnnoooo!!!!

But for now we are going to see if it is reflux and try some tablets to see if it gets any better whilst we find out possible ways to get a scan. We are also going to arrange a haircut and get it cut as short as is possible which is not at all easy! Luckily we have an amazing hairdresser friend who has known Holly from birth and has always cut Hollys hair. We have tried so many different strategies and now she just has to follow her around the room and cut it’s off. It takes about 5 minutes (you have to be quick!) but it always looks great. Hope she’s ready for a more severe trim! 🙈🙈🙈

So this was a shocker this week! We will just have to see what develops and tackle whatever the problem is when we get to it! Just makes me think though ….. Whatever Next?!!!

If anyone has any experience or any advice on hair eating/hair balls please get in touch. Thanks 😊

Day 8 Update

Placement offers 0

Placement rejections 2

Placements interested 2

Official Complaints 1

Current status: Exhausted

Home Destruction…

Toilet seat off twice – broken connections.

The kitchen floor has seen plenty of action. One unwatered Pot Noodle distributed over it (and that dust gets everywhere!) One full bottle of squash poured over it. One broken glass, the thick Ikea ones that shatter and cover every inch and you’re still finding bits 2 days later, first thing in the morning- worst time and had 1 cut doggy paw! 😢 Plenty of meltdowns in various positions! 😫

I’ve noticed more marks on door frames and doors. Same height. So either a 5ft beaver has moved in without my knowledge, the dog can fly or hover 5ft off the ground whilst chewing every wooden object she can find OR its Holly! Which I’m thinking is a safe bet! 🙈

Everyday behaviour is as expected, full on, 24:7 attention with no let up. I don’t think I’ve slept properly in 8 days – firstly because of my own anxiety/stress and also because I’ve managed to pick up a really nasty cough and sore throat. I am hoping that these might help me sleep tonight!

Sleep and rest is needed right now. Not sure how long we can keep going at this pace, constantly, without any proper respite or placement.

On the plus side Holly has had a few moments of calm…

And Holly loved it when we had to bath the dog (after she had fell in the canal – the dog that is – not looking where she was going!) She mentions it whenever we go in the bathroom!

One clean fluffy ‘Poppy-dog’.

In case you missed my last blog on Hollys return here is a link Look who’s back

Look who’s back

Exactly 8 weeks after moving into her residential care placement, Holly is back. Can’t go into details and don’t want to bore you all but Hollys placement didn’t work out. Nowhere else could be found and so Holly has ended up back home. Despite, at her placement being assessed as needing 2:1 and sometimes 3:1, she’s come home to where most of the time it’s 1:2 – that’s me and two children! I’ve asked social care about this a few times and it’s the same answer ” it’s ok because you’re her mum.” Now I love my daughter and I would do ANYTHING for her but I am not superhuman! Holly is bigger and stronger than me and so stopping her doing something she really wants to do is impossible, this can be regardless of any imminent dangers – Holly has NO awareness of any danger! She needs to be watched every minute of the day for her safety, the safety of others and to prevent destruction, which is tiring and relentless and you cannot do anything else that may take your attention away from her. Not sure how long we can keep this close non-stop vigilance going! We haven’t got any respite either! But “that’s ok because I’m her mum!” Seriously it makes my blood boil! Thinking I should get that saying on my gravestone… ‘died… but it’s ok because she was Hollys mum!’

Also thinking to the future this is a major set back – it’s not preparing Holly in the way we hoped and the reasons I outlined in a previous blog … My Head is a Shed

Anyway… small rant over. Holly seems happy tonight. She had a 45 minute bath! Then afterwards I’ve had lots of sniffs and kisses! ❤️❤️❤️

Do you believe in art therapy?

So life’s been extremely stressful recently and since Holly moved into her residency I’ve had time on my hands which to be honest I’ve struggled with, add to that the placement breakdown and the stress levels and emotions have rocketed – I’m finding it hard, not knowing what do, not knowing how to relax, too much time to think, so my mind has been working overtime, over-thinking, over-worrying, unable to make decisions etc. So I needed a project…

I’ve always loved art and those who know me well know I feel quite passionate about it and I believe it’s good therapy, can make you happy, has well being and mental health benefits especially for children. I love teaching art and believe everyone can be an artist and succeed in some form of art or media. I think this all goes back to my school days where I had an amazing art teacher who encouraged us to have a go, try different things and follow which ever art path inspired us. Well, thinking about it I made some weird art pictures and sculptures at that time!! 🙈🤣🤣🤣 One particular mod roc gorgon head vomiting rubbish, I think could still be in my dads loft, if it hasn’t been eaten by mice! Ha ha ha!

Back to today. I found an old tin of my grandmas buttons last week which gave me an idea.

I could use these as inspiration for some art work. I like the idea that if old buttons could talk they’d have some tales to tell! But what if I could give them a new adventure? And so begins ‘Granny’s old button Tales’. I love painting so thought I could combine it with the buttons.

Here’s my first two pictures, ‘Button Moons’ using two large matching buttons, probably coat buttons.

As you know, Holly is a clothes and furnishings shredder so I thought I could recycle some of Hollys ripped up clothes and maybe include some textile and embroidery in my artwork? Unfortunately the buttons rarely survive as she eats them! Here’s the link to Hollys shredding incase you missed it…

The Master Shredder

I also plan to use things I find in charity shops and reuse as much as I can eg painting over existing canvases, recycling frames etc.

On one of my charity shop visits, I found this cardigan with some fabulous buttons on. So I bought it thinking I can take the buttons off for my artwork and then Holly can wear the cardigan. She would eat the buttons if I left them on so I could just sew it up like a jumper. But in Sainsburys yesterday I noticed that non of the cardigans had buttons on… so I might just leave it 😆😆😆

Next idea is in my head – just got to get it on canvas! I know it will only take my mind off the stresses of life for a short time and our issues won’t just go away but I’ll be happy and relaxed for a short time anyway Check out my art page to see more.

Granny’s old Button Tales