On Saturday 13th October 2018, my friend contacted me to say that she’d received a letter stating that Ruby-Rose does not meet the criteria for a Family Fund Grant. In the summer of 2018, after seeing Ruby-Rose several times I encouraged her family to apply for a grant after receiving 3 years of grants that had significantly made a difference for my eldest daughter, Amber (now 6.)
Since the age of 3 months, Ruby’s mother, Claire has been asking my advice as she noticed something regarding Ruby’s development, some may say that this is very young, but I can completely relate as parents, we are the experts on our own children.
Ruby has been seen by a great deal of professionals at her young age, she also received hospital care for Meningitis at 5 months old, this was an extremely worrying time for the whole family. Ruby has been seen by Health Visitors, GPs, Paediatrician, Physioterapist, Specialist Play, and staff at a local SEND school who are offering support as Ruby will need to attend this school when she teaches Nursery/Reception age.
Ruby has been assessed as having a cognitive age of 3 month old, she does not interact with her 2 sisters, to this I’ve witnessed on several occasions. She doesn’t respond to her name and has a great deal of sensory processing difficulties. On the whole, Ruby is a ‘Sensory Avoider’ she is startled by sudden movement, loud and unexpected sounds, has difficulty eating foods that aren’t soft/puréed and therefore has a very restricted diet. She is very tactile defendant, she doesn’t like physical contact and gets distressed, especially when being examined by professionals, such as a Physiotherapist, making it difficult to work with her.
Ruby is currently screams for hours on end and demands and needs around the clock care, she is also having sleep difficulties, finding it hard to settle at night.
Ruby is calmed via sensory equipment such as lights, we known this from when the family attend the ‘stay-and-play’ sessions at the local SEND school and they’ve also taken her to an ‘Autism and Additional Needs’ stay and play session locally. The huge barrier for Ruby’s family, is that the specialist equipment and toys she so desperately needs are very expensive, as you are well aware.
Ruby does not play with regular toys, as ‘Neurotypical’ children her age would, as they are not age appropriate due to her Global Developmental Delay (GDD.)
Ruby requires a calming space she can relax in when she becomes overwhelmed and goes into sensory meltdown. A place where her parents know she will be safe with toys she can not put in her mouth and hurt herself with.
As Ruby hates physical contact, her parents can not hold her to calm her, she doesn’t give eye contact and becomes distressed when doing day to day tasks with her such as feeding and changing her. As she does not sleep through the night, she will sleep for 15-30 minutes and wake up distressed, screaming headbanging to the point she is sick.
Claire, Ruby’s mum, can not work due to Rubys complex needs, and this why the family are struggling financially. All they want is to provide their daughter with the specialist toys and equipment that she desperately needs.
I’ve always been a huge advocate for the work that Family Fund have done for families, I’ve shared this via the parents support group I coordinate locally, to which Ruby’s mother is a member. My own family have had our photographs taken to use for Family Fund promotional materials.
Mum heart is literally breaking for this little girl and her family, I urge you to please re-consider your decision.
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.
I usually prefer to write about Lou’s journey, not my own.
But on days like today I remember back to 2008/9 when I had, what I now describe as my ‘tricky time.’ I prefer to write all of my memories from this time to my online books. I’ve always carried a feeling of being ashamed of suffering a nervous breakdown, but what I’ve learnt over time is that it happened and I’m here to tell the story and therefore:
“My story isn’t over yet!”
(Source: Slogan from Semi-Colon project.)
I was homesick, 3 hours from where I grew up, I hadn’t really branched out to make a lot of new friends outside of where I worked as I didn’t feel that many people ‘got’ me. I had a bad reaction to some anti depressants and it all went a bit down hill from there. I remember feeling so very scared because I didn’t feel in control of my own body and I couldn’t trust anyone around me due to the paranoia I was feeling at that time. I have this tremendous pang of guilty because people did get hurt at this time, lives were changed down to me but it’s not like I chose for the black cloud to descend on me 😦
I could have stayed feeling guilty forever, I could have let it consume me, but I now take the approach that:
“Everything happens for a reason.”
And I wouldn’t be on the path I am today if these events hadn’t happened. I had to go through a tremendously rubbish path to enable me to learn about myself and become the strong person that I am today.
This event in my life sparked some (still mainly) unanswered questions about myself, as a child and also an an adult. I suffered brain trauma at birth, could this have any effects on my mental health? (Another topic for my ongoing research,) although no one is to ‘blame’ all I can do is learn about myself and how I can go about to ensure I can function. I have questions about:
– Bi Polar? A huge question mark as I no longer have ‘high’ episodes, more on an even keel.
– Highly Sensitive Person (HSP.) As suggested by a great counsellor I saw.
– Sensory Processing Difficulties – in particular, a ‘sensory avoider.’
I could sit and ponder on these things all day but…
…What I have got are 2 beautiful children and a partner that understands me, for me, like no other person has (except my mum!) Ever! I’m now back, where I feel that I belong, back where I grew up and in familiar terratory. With people close by that would spot straight away if I didn’t seem right. My issues have only meant that I’ve ever had a few weeks away from working, I’ve been able to do a job that I so desperately love, that allows me to forget about my worries, for over 12 years. One of my biggest worries is that my issues would stop my future career prospects as my fear was that people would ‘think’ that I wasn’t suitable to work with children, but it has never stopped me, it’s one of the elements where I tell myself “keep going, your good at it!” When I run my music sessions currently, and I see the children are smiling and enjoying themselves I think to myself “this is what I was born to do.”
I do worry that I could have future ‘occurance’ but I desperately try not to dwell on it, I worry that my daughter will suffer the same worries as a teenager and throughout stressful times in life. But I can be the one who can spot her troubles and get the appropriate help if needed.
Mental illness needs to be talked about, for years it felt like my ‘dirty secret’ I was so worried and moulded on other people’s impressions of me. What are people with a mental illness supposed to act like? Do people expect me to have a massive meltdown in the middle of a public place?! Do people expect me to sit and cry all day? In fact I find it very difficult to cry, I have only cried twice in the past month!
We need to talk to other people who are going through, or have been through the same experiences, I have a few friends and my sister who I could be completely honest with about how I’m feeling and can talk openly about my experiences, I recently chatted to one friend for 3 hours about how we perceive the world and people in public, and realised that it’s not just me who thinks a certain way! Which was a massive relief for me! I’ve only had one experience so far, of sharing my problems, (regarding a view I have on a particularly sensitive subject,) where this person really couldn’t understand me, and later referred to me as “ungrateful” amd “selfish,” (needless-to-say, I no longer associate with this person!)
One of my biggest hurdles was plucking up the courage to tell my GP how I was really feeling, the GP’s can only really help if you open up, something that I’ve learnt over time. I was so worried about being dismissed or being told that I was “making it all up.” But thankfully, this has never happened. If I have a problem I write it down and hand it to my GP, for me, I am the sort of person who finds it easier to write things down, rather than to make eye contact on a particular sensitive topic. If you, or anyone you know, are feeling that you need to talk to your GP, my advice would be to write it all down and post or take it in personally.
This is a topic that is close to my heart, Facial Palsy UK completes research projects which aim to create a better future for everyone affected by facial paralysis. As I get older I may enquire about surgery, as my skin loses its elasticity. Please see here for more on my personal story: http://wp.me/p7BVlE-1m
This is a subject that this very close to my heart. My closest friends and family know why I am passionate for this cause. It doesn’t matter if your 3 or 33, child abuse and neglect should never happen and there is no excuse for this behaviour. These actions have so many implications, not only the child at the time, but for the rest of their lives they carry it with them and there’s evidence to suggest that certain aspects can in fact, be passed on to future generations.I wish I could give more, but I can help put a little towards helping this extremely important cause.
The following are links to websites that I’ve found very useful and helpful in the past few months, all of the following also have a Facebook page/group, and can be found via the search bar.
SMILE stands for Sensation Movement Interaction in Life Experiences. We help a variety of children with profound and multiple disabilities. Lou attends here for hourly sessions, especially in the school holidays it’s amazing 🙂
Promoting inclusion in mental health, education & employment. Endorses University of Derby’s online course I’m currently completing in Autism, Asperger’s syndrome and ADHD.
Improving life chances through better understanding and management of ADHD, change the negative perception of ADHD into a positive.
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 🙂