I don’t have a very political brain, but I sure do have a very passionate one. I’m trying to learn more about politics and I’ve recently joined a local online Facebook politics group.
My problem is that my views are very ‘tunnel visioned’ and I struggle to understand the opposing views as I feel uncomfortable and frustrated when someone hasn’t got the same view as mine! I even struggle to debate on politics with my own Father! I will back down if views become conflicting, in the past I’ve changed my views to match those of the opposing person in order to avoid confrontations at all costs!
However, I want to explain why I won’t be voting for the ‘Blue Team’ (as Lou would describe it!) this Thursday 8th June in the 2017 General Election. The following post I wrote last year:
Explains why I stood up at the local Council Scrutiny meeting and shared my family’s story of the vital service of ‘Family Support’ delivered via Family Support workers from the Children’s Centres in Worcestershire. To recap the local Conservative government cut vital services to children’s centres in the Worcestershire area and as a result we no longer qualified for a family support worker. The local Conservative government promised that “No Children’s Centres will close,” but we found this to be untrue for cases such as the ‘Orchard Vale’ centre in Evesham, where I visited 2 weeks ago, the sign covered over with a mass of leaves, and when peeping into the window where there was once an office with smiling faces there is now no one there, the room where I took my youngest child to see her Health Visitor is no longer in use, and the room where I once took her for the baby ‘stay and play,’ which used to be full of mothers and their babies is now an empty room.
I wrote to Cllr Bayliss and he passed me onto his ‘officer’ who looked into my family’s case file without my consent and proceeded to tell me that “you’ve received your full package of support.” In the end I had to block Cllr Bayliss on Twitter as I couldn’t stand to hear any more excuses for the cuts to vital services, and his ‘but I’m ok’ general persona. When they told me that we “no longer qualified for support” my eldest child wasn’t under the Umbrella Pathway for Autism assessment, her behaviour at home wasn’t as extreme as it is now. I wasn’t under assessment for adult Autism, my youngest child, now 2 didn’t have a diagnosis or additional needs and now does and we hadn’t received the paperwork back clarifying that my partner of 7 years has moderate learning difficulties and requires literacy support. We now have triple the difficulties functioning as a family today than we did when we received family support back in 2015. But still no support. Parenting is hard in general but parenting 1 or more children with Special or Additonal Needs is the hardest thing I’ve ever done in my life, I truly believe that all families that identify as have a child or children with Additonal needs and wants support at home completely needs and deserves this support without any doubt.
I’ve recently tried to re-refer back to the family support service but still do not hold out much hope, my eldest daughter’s school are also doing all they can to help and they are also aware how vital this support is for our family.
But it’s not just us, I wanted to share our story as I know we are not the only ones in the same situation. And it’s not just the children and families service that has been cut, I recently rang adult social care and they cannot offer us any support either because my partners care needs are “not severe enough,” even though I’m supporting 2 children and an adult in the household I’m still just left to “work it out.” I’m firing on all cylinders and close to a complete shut down, yet we still don’t qualify for any help.
I really do hope that something positive comes from the general election.
All political parties have different campaign promises, but my vote will go towards one of the parties that supported the Worcestershire ‘Save Our Children’s Centres,’ campaign to the bitter end.
Challenging behaviour and meltdowns are something that I deal with every day. After working in Childcare for 12 years, (6 years with children with additional needs,) nothing could prepare me for dealing with my own child’s challenging behaviour in the home environment. I have soon learnt that the relationship I had with my pupils is completely different to the emotional connection that I have with my own daughter, Amber (4.) I have learnt that certain strategies that may have worked with the children I looked after do not work with Amber.
I quickly had to learn the important huge difference between a ‘temper tantrum’ and a ‘meltdown.’ As Amber has Sensory Processing Disorder (SPD) with traits of ASD and ADHD, she can experience ‘Sensory Overloads’ and this often results in a ‘meltdown.’ This is when I describe that she is no longer in control of her emotions, I’m often describing that Amber is neither ‘naughty’ or ‘spoilt,’ these are meltdowns are occurring because there’s a sudden loud noise, a change of routine or she has become overwhelmed in a supermarket from the noise, the lights, the sheer volume of people. Amber has difficulty recognising that she’s feeling overwhelmed and therefore will display her feelings via kicking, hitting, pushing, throwing items, pushing her younger sister over, pulling stairgates off walls, thrashing herself about, banging walls or doors, spitting, screaming or shouting.
At 18-months-old I first noticed that Amber was a ‘sensory seeker,’ she would actively seek out anything that would provide a sensory input, for example, she enjoyed running the taps in any bathrooms and feeling the water run through her hands. I found that her temper tantrums were frequently and I was constantly told that this was “normal for her age,” and that she would “grow out of it.” By the age of 3 she became a big sister and I had prepared myself for her behaviour to become more challenging, the advice I was given was that this should only be a ‘stage’ and that after she was used to having a new baby in the family, then her behaviour would improve, however it didn’t, and as time went on she became increasingly worse, and would display on the whole as compliant in her Early Years setting but extremely challenging at home, she would target her baby sister by pulling her legs and trying to tip over her Moses basket, the jealousy she felt toward her baby sister was quite extreme. By the age of 4 I started to recognise certain things that Amber didn’t like, that she would avoid, for example, physical contact – she would only give out cuddles on her terms and when she did they were very tight cuddles! She also became anxious around unexpected loud noises like motorbikes when outside and she could hear aeroplanes and grass cutters long before I could! It was around her 4th birthday that I would say that Amber’s ‘extreme meltdowns’ started. These were sometimes around 10 times a day and some would last over an hour, and I found it incredibly difficult to deal with as it was such unknown territory for me. The main triggers for a meltdown are:
• Unexpected loud noises,
• Changes to routine – finds school holidays very difficult.
• Wanting something that she cannot have – usually centred around food, as Amber cannot tell when she feels full.
• Public places – usually indoors – supermarkets, libraries, sports halls, swimming pools, cinema, theatre.
I can usually gauge when Amber is on the verge of a meltdown, she becomes extremely restless, will talk quickly and will jump, clap her hands in front of her face or try and climb onto anything she can to jump off.
I use a range of strategies to help avoid a possible overload:
• Visuals – to display routines of what is happening during each day, traffic light system – to help Amber identify if she needs to free play (green,) find a calm activity such as playdough (orange,) or go to her ‘calm zone, (red.) I also use individual cue cards and fans, e.g to show ‘kind hands.’
• Always carry Ear defenders – in case of loud noise, e.g. at the train station.
• Listening to fears, worries, frustrations and what makes her angry – talking through exactly what the problem is if she is willing to share. This is a recent strategy that has worked once I noticed more challenging behaviour days before a Halloween party, we talked and Amber said “Mummy I’m scared of Halloween.” I could then address this to avoid an overload.
• Keeping calm myself – this is easier said than done! It is one of the most difficult things that I’ve ever had to go through and I’ve always been told that I’m a calm person but it’s very difficult to handle when you are being challenged daily, and you’re the main person that your child outlets with, there was a time when I felt completely hopeless and my self-confidence took such a knock. But staying calm allows situations to be diffused, if my voice is raised then Amber will also raise hers, but If I remain calm, then she calms quicker.
• Avoiding the word “No” – we use strategies to avoid demands on Amber, if she hears the word no, she can become even more angry. We phrase instructions carefully, for example, when getting dressed for school: “You put your socks on, or I can help.” This can be quite challenging for us to think of at times!
• Distraction – Amber thrives on sensory and messy play experiences as part of her ‘Sensory Diet,’ If I plan experiences when she’s at home, such as playdough, sand and water play, foam play, etc she is satisfied in terms of her ‘sensory seeking,’ and I find that her level of concentration is much higher whilst engaging in this type of play.
I have learnt over time that there are specific strategies that can help during and after a meltdown:
• Breathing exercises, e.g. lying down and counting to 10 with a teddy on her tummy. Smelling the flower (breathing in,) and blowing out the candle (breathing out.)
• Calm area – a specific area of the house, including blankets, cushions, bubble tube, sensory toys.
• Wrapping up in a blanket – Amber responds to a ‘weighted blanket,’ and likes to feel safe and contained.
• If in full meltdown mode, (as I haven’t had up-to-date restraining training,) I have been advised to ensure that Amber is safe, e.g. that she cannot bang her head and that I leave the room with her younger sister for safety, but keeping Amber in sight.
• Offering a reassuring cuddle once a meltdown is over, to talk about what happened later, once she is much calmer and try to establish what the problem was.
• Rocking and cuddling tightly can help to calm her.
I felt completely lost after having my second child when Amber’s challenging behaviour peaked, I would have appreciated someone to advise me that everything would be alright. Now I try and help other parents as much as I can, this is one of the reasons why I started my Blog in March 2016, I’ve always said that if I could just help 1 other person it would be worth it.
My top tips for parents who experience challenging behaviours from their child are:
1. Connect with other parents – via social media support groups and local support groups. I attend a parent’s support group, for those that have children with additional needs, which is run from my local children’s centre I have also joined a local support network where there are meet-ups for parents to connect and for the children to interact. This is such a huge support for both myself and my partner, to talk to other parents who know where we’re coming from and have been through similar experiences, this allows us to share tips and ideas and provides a reassuring emotional support.
2. Research – time is precious and we lead such busy lives, but I’ve found it so useful to research the reasons behind challenging behaviours in children, via internet searches and reading various books. There is a fair amount of reading material out there and I’ve found a lot of helpful books that offer information on dealing with anger in children. I have soon learnt that ‘there is a reason for every behaviour,’ and this has put it all in perspective for me, to stop and ask myself: “Why is this particular behaviour happening?”
3. Never be afraid to ask for help and support – in the beginning I saw asking for help as a weakness, I was embarrassed after working in childcare and that I was struggling to cope with my own child’s behaviour at home. But once I contacted my local children’s centre, and was offered Family Support this turned our whole family life around. Our family support worker made weekly visits to offer advice and strategies to support us to deal with the challenging behaviours that Amber displays. Without this vital support our whole family life would have suffered.
4. Always carry a ‘Fiddle’ bag or box wherever you go! This has prevented many meltdowns, especially whilst out and about, providing a distraction and something to focus on if I recognise the signs of Amber becoming restless, or on the verge of a sensory overload.
5. Believe in yourself! – As someone who’s parenting strategies have been constantly scrutinised, this has really knocked my self-confidence, as Amber is a very good masker of her difficulties and she tends to offload mainly with me, I’ve now learnt that this is because she feels most safe with me and that it is nothing that I’m doing wrong. Believe that you are doing a good job. Take a deep breath and try to offer yourself little ‘brain breaks,’ I go upstairs for 5 to 10 minutes and sit quietly in a dark room once Amber’s daddy returns home from work. It is very difficult to find time for me, bit this is so important.
As one of the admins for the ‘Save Our Children’s Centres’ (Worcestershire) campaign, I have designed this campaign poster 🙂 including a photo of Lou’s trademark hands!
Anyone who has read my 2 Blog posts, and/or read the newspaper article with our story, you will know how the local children’s centres have supported us as a family since August 2015. Without this support we’d be completely lost – however we have already seen the effects of these cuts, as opposed to weekly visits last year, we’ve only had 1 home visit due to the funding cuts and staff redundancies. The family support workers are being told to target and support families in ‘areas of high deprivation’ but what about families like ours who just needed support at home that have a child with additional needs, our worry is so many families and children are going to slip through the net 😦 it doesn’t matter how much money you have, or what your social status is – every child and their family has the right to support.
If anyone would like to support us please visit Twitter @SOCCWORCS
Anyone is welcome to join and you don’t have to live in Worcestershire 🙂
Thanks for reading 🙂
On the day the decision stood that the 32 centres would remain open but will have their funding cut from 4.5 million to 3 million. What myself and other parents in the support groups I belong to are concerned about is with this level of cuts how can the same level of service be provided? There are many experienced professionals in areas such as Family Support who are still unaware of the security of their jobs. These professionals work so hard, and not only work from the centres, but go into family homes to provide support.
Conservative Councillor Marc Bayliss is very vocal about the decision on Twitter providing replies to selected ‘Tweets’ via Twitter. I asked him:
“If you had a child with additional needs who had up to 10 meltdowns a day, which service would you go to for support?”
“We are not shutting any centres and children and families in need will still be supported.”
Such a general reply that many people are receiving, what I wanted was for Councillor Bayliss to put himself in our shoes, and try to understand what it’s like when you don’t have a child who complies at home, who has explosive outbursts, that effect the whole family, and this still happens after every strategy you’ve tried. If the centres are still open is it guaranteed that the families will actually receive the same level of support? I don’t think so, in August 2015 we were referred to Family Support at our local children’s centre and a year on my child’s behaviour is actually worse at home as she is stronger and more difficulties are becoming notable, instead of weekly visits we have now been offered 1, yes 1 home visit, so yes indeed we are already seeing the effects of the funding cuts. I am saddened that Councillor Bayliss cannot be more sympathetic towards parents who support the centres, as he is a father himself.
Catherine Driscoll a senior director at Worcestershire Council was appointed to oversee children’s services, on 16th August 2016, the Worcester News published a report where Ms Driscoll stated that:
“People using the centres are not those most at risk.”
“They are not vulnerable families at risk.”
This angered me greatly as it was all about demographics, statistics and numbers – ticking a box – something that matters to me the least. Then I thought about our own case, we are regular children’s centre users, as my previous Blog post details, I attended baby groups as I felt isolated, I have a history of anxiety and depression and this means that I often feel socially awkward and find it difficult to talk to other people. We live in a council house, our rented house was sold and we didn’t have the money to rent somewhere else privately as money was extremely short after not returning to work after July 2014, due to a house move into a council rented house, to which I have no shame as my partner works over 40 hours a week and we have made it a cosy and safe home for our children, does this make us not at risk? Does having mental health issue not put me at risk? My partner has learning difficulties and severe Dyslexia- does this not put us at risk? I also happen to have a degree in Primary Education and a Postgraduate Certificate – Early Years Teacher Status (EYTS.)
What I’m trying to say is not everything about everyone in a household has to be straightforward, whether seen as ‘vulnerable’ or not, families from all walks of life need support. Just because I have 12 years’ education and childcare experience doesn’t mean that I’m a perfect parent, when I discovered my child had additional needs I struggled, even though I’ve worked with children with additional needs in the past, when it’s happening in your own home, and there’s so much emotion involved it’s a very different story. I wish people could see past generalisations of ‘groups’ and ‘types’ of people and what they should and shouldn’t be able to do.
Councillor Bayliss talks in such a nasty way to centre supporters on Twitter he wrote to Daniel Walton (PCC Candidate for West Mercia – Labour Party.)
“you we’re the one predicting a mass demo. BTW there were 46 people there inc. 3 labour & 1 green councillors.”
In fact, Cll Bayliss had not included the children into the equation that attended the council meeting on 15th September and it’s their future that we’re fighting for, and of course they matter!
Siani who runs the group for Worcestershire mums network was correct in stating to Cll Bayliss:
“do you have any idea how hard it is for families to attend a weekday meeting? And how hard it was for the 46?”
I care, I wanted to be at the meeting with my children, but I couldn’t attend that time on that day. Cll Bayliss’ Tweet made me want to justify why I couldn’t be at the meeting, although I wanted to, along with many other parents.
Here’s the reason why I didn’t attend:
My 4-year-old started school on 5th September and is still attending for mornings only. After I dropped her off at 9am, it takes me around 15 minutes to settle her as she has Sensory Processing Disorder and is overwhelmed by the noise and business of her classroom first thing in the morning, she will literally cling onto my arm until the classroom isn’t as busy. By this time I would have missed the bus from my village to County hall, (8 miles away) and I do not drive due to circumstances from a crash when I was younger. I needed to stay within the local vicinity as my daughter was picked up at 12.45, meaning if I had attended the meeting I couldn’t have made the pick-up and she would have been distressed that I wasn’t there to collect. If I had brought both my children to the meeting, it would have meant my eldest missed school and it was important that she settles in her first days, having Sensory Processing Disorder means that she simply wouldn’t have coped with the sight and sounds of a council meeting and would have attempted to run out of the room several times. What I’m trying to say is, not everyone drives, not everyone has it easy, some people have to plan their trips out to the finest detail to ensure their children can cope with the situation. I will make my voice heard through the power of words, online via my Blog and social media, I’ve never been any good at debates or understanding politics, but I can write about what makes me passionate – and the lives of other families who experience the same as we have, but that miss out on the support, due to funding cuts – that’s what drives me.
Today I asked for help…
I always find this is a sign of weakness on my part. I had got to the point of almost giving up my current fight for support for Lou last week. Then I look back at the hours I’ve put into this Blog in it’s 3 months, and think “just carry on, just carry on.”
As I discussed in my previous post regarding sibling jealousy, we thought that Lou’s behaviour may improve as Moo grows older and becomes on the move, walking and talking more.
In fact we find as a family, that Lou’s behaviour is in fact worse at home, I have recently described it as appalling, and sometimes unbearable. I love writing positive posts, I love sharing the things that are working, but I hold my hands up and say “we need help.”
We received Family Support through our local children’s centre, we were discharged in January 2016 as we came on leaps and bounds with strategies in terms of visual timetables, bedtime routine, ensuring clear and consistent boundaries and methods for calming anger and frustration, such as using a ‘calm tent’ and squeezing a teddy whilst lying flat on her back. These methods all worked for approximately a month or 2, it’s hard to tell exactly when it started to all get a bit crazy again. I was so pleased how far we’d come as a family, so I was not wanting to admit defeat with our recent issues. Dealing with anger outbursts and flying objects at our heads is hard, Lou is so heavy to carry now so if she’s throwing objects I usually now have to remove myself and Moo from the room rather than removing Lou herself. If I place her in a ‘safe zone’ like her bedroom in her ‘calm tent’ she will pull the stairgate so hard she can lift it from the bottom and escape.
I worry (I worry a lot!) That through this behaviour, Lou is going to hurt herself if Lou, and it’s my job to protect them both. Rather than productively exploring toys such as small world houses and people, Lou will prefer to flip Moo over onto the floor and has started ‘slam dunking’ her onto her lap. If she has a strong grip on Moo I literally will have to prize her hands from the grip she has on Moo. I wonder if this occurs in all households with a child who has similar difficulties, I often think like I need to be a ‘fly on the wall’ to see that I’m not the only one. It’s incredible how much time and energy this takes up, my partner and I have recently described our current situation as:
“2 adults that police our child’s behaviour.”
It is scary to watch Lou in full seeker mode, it’s almost like in her head you can see whizzing, she cannot be still and will climb and jump off furniture, if you try and talk her down she cannot listen her brain is whizzing so fast she’s simply not taking the information in. She is constantly looking around for items to touch and bang on.
Lou also petrifies me near the busy road we have to cross to her Pre School setting, if she’s feeling like she needs to offload before we get home, like today, she will sit on the path and after crossing a road will attempt to run back towards the road, not seeing any dangers. Lou wore reins until she was 3 and a half, they are now to small but I wonder what to do for the best, it’s so difficult when others her age she interacts with don’t have a need for reins anymore.
Therefore today I contacted my local children’s centre again and I self referred our family back into support, we need the help and I’m now not ashamed to admit it.
I will post again when I hear more, let’s keep fingers crossed 🙂
Research series: Attachment difficulties in relation to our experiences.
I am currently researching various difficulties that relate to our experiences that will help me understand Lou more. But also to enhance my knowledge and understanding of SEND in general to help with future job roles when I return to work. I am completing an online course in ‘Understanding Autism, Asperger’s and ADHD through The University of Derby via http://www.canvas.net
Here I will start with discussing ‘Attachment Difficulties’ :
I hadn’t really thought of Lou as having any sort if attachment difficulty until recently. When piecing it all together and reading up on the subject I’ve realised how it relates to our experiences. I was worried when I first started reading (as I do worry at lot!) That this meant that I didn’t bond with Lou as a baby, I had been asked this during an appointment with a professional when I first started to seek help for Lou’s behaviours at home. But then I thought – of course we bonded, Lou has never been one for cuddling and I’ve been told that from about the age of 6 months I would shy away from physical affection. Lou likes to be cuddled on her own terms and if she doesn’t want to be cuddled at that moment she will squirm away! When unexpected cuddles do happen it’s a massive squeeze! I have looked at attachment theory after a few discussions with professionals that work with Lou I was given a book to read called:
Observing Children with Attachment Difficulties in Preschool Settings
by Kim S. Goulding et al. The observational checklist from this book is most helpful and it was suggested that I should take this along to Lou’s next appointment with her Paediatrician as it may explain some of the emotional issues that Lou displays.
Lou has a great sense of humour, her laugh is infectious but I have described her as ‘Jekyll and Hyde,’ she can switch from being extremely happy to very angry in a second and back again minutes later. Lou has trouble controlling her emotions so I do my best to help her label how she’s feeling, especially by using visual cards which display various emotions. If she is having an angry outburst which could have stemmed from me going upstairs without her, we have certain methods to help calm, such as getting her favourite teddy and squeezing it hard, lying flat on the floor and breathing in and out whilst counting to 10.
From using the Observational checklist I noticed a pattern that Lou is secure at parting from me when I drop her off at her Early Years setting, she is happy to go off in the mornings and quite happy to go and explore what’s on offer. She will run at me with great pace at the end of the day when I collect her! Lou was used to being left at a childminder and nursery when I returned to work full time when she was only 10 months old. She cried for a week when I left her at nursery but since then she’s never had a problem parting from me. Lou’s attachment difficulties happen at home or in public, or even at her grandparent’s house. In fact, it happens where ever I am! I am unsure of the reasoning why but whenever I am present, Lou’s behaviour is worse, especially if I am present with her younger sister Moo. I was talking to someone about this as it seems to me that Lou has issues around me as she knows that I carried Moo and brought her into our family. Please see my further post on ‘Extreme Jealousy’ for more on this.
A typical day at home is Lou following my every move, she dislikes being in a room on her own. This also happens at her grandparent’s – if she is left downstairs – even if I’ve only popped upstairs to collect something for a second, she will have a major meltdown. If we move up or down the stairs she has to be in front everytime or this will cause another meltdown. Lou will be unable to productively play with toys if Moo is in the room, she is majorly distracted by her and will just want to rough-house and roll her over! Lou will be unable to play with any toys without adult guidance. She is very demanding of attention and will give comands such as “come here now” and comes over very bossy! Lou likes to control her environment, she likes to control what Moo is doing and often snatch toys away from her. Lou loves the outdoors, but she will not feel settled out there in her own, if an adult is outside she will quite happily explore, play in the sand pit or on her bike. I had an example of Lou’s impulsive behaviour if she’s detached from me only today, where I had to get out at a petrol station and she thought I was going inside without her, so she broke out of her car seat and flew open the car door, and jumped onto the forcourt not seeing any dangers like cars around. She has run off from my parents at the same garage before and we are still unable to explain really why she does this.
The section in the Observational Checklist about how the child behaves with unfamiliar adults was really interesting as she is overly affectionate and gets right up in people’s faces, she will sit next to people on the bus and say: “Are you my nanny? Can I come to your house?” She also is very inquisitive and has no filter, she will say things ‘as it is!’ She asks her Aunt everytime she sees her: “why have you got funny teeth!?” Lou gets very anxious when she knows that we’re going somewhere, especially if it’s somewhere new. She requires a lot of reassurance and the use of a visual timetable, if she is worried about going somewhere she will usually run around the living room in circles or hurt her sister. She also completely surprises us with her reactions as they are not always what you’d expect them to be! As Lou is a sensory seeker, she was quite happy to watch the needles for both her Pre School injections and a recent blood test and didn’t even flinch! Yet even I can’t watch!
Lou’s behaviour around me can be fascinating especially in a situation where I would lead a class with her present, she simply couldn’t handle it and will do anything she can to gain my attention away from other children. She would sabotage my weekly music sessions by taking my equipment or crawling around the floor, although won’t display this behaviour if I wasn’t present in the room. After the session Lou will say to me: “Oh Mummy, why do you have to come to my Preschool to do music?!” I must admit there have been lots of times when I’ve wondered if I’m to blame for all this, as soon as I’m in the equation Lou steps up with the difficult behaviours, I’ve felt like a failure and cried over it many times. After 2 very successful parenting courses through Wychavon Early Help (Pershore) I have gained confidence and tell myself “it’s not my fault.” I found that the Triple P parenting course and Family Links were most beneficial as they allowed me to also talk to other parents who experience the same. We were also given support of ‘Protective Behaviours’ for Lou, due to her unawareness of ‘Stranger Danger,’ I’ve had to discuss that it’s OK to say hello and to be friendly, but also had to ensure that Lou isn’t too trusting so that she would happily go off with a stranger and this will have to be revistied as she gets older.
I do find it very helpful to research what makes this ‘loveable little rogue’ tick 🙂