My Struggle with Prejudice and Stigma 

If you have read any of my previous blogs I like any other parent raising children can go through a series of emotions daily. Some are bad days where I struggle with parenthood to the point I feel my emotions are boiling over, my neck and shoulders hurt, I over eat due to stress and I generally feel crap, but other days make me realise how amazing motherhood is. 
I have four girls aged between 13 and 7 and being able to watch them forge their own paths in life is an amazing privilege. We bring these tiny people into the world and are their family, teachers and support network. When they become older these little bundles trust and rely on you for everything still and you know that you will move heaven and earth to protect them. That feeling never goes away…..even now my own children are growing I still feel that sense of protectiveness and love I felt the day they were born. Even more so sometimes, I want to protect them from society and peoples cruel words, from prejudice and judgement.

   While I never thought I would raise disabled children as many parents don’t I have never hesitated in doing all that I can to make sure they get the best and I fight daily to ensure they are raised in a world that does not see them as different and unable but sees them for the amazing people they are and days like today when they learn something new makes me proud. 

All disabilities are different and need care in different ways but we parents become their carer’s and their advocates. In a world that is slowly changing to accept that people with disabilities deserve the same rights that we do I feel my children have more chance of showing the world what they have to offer. This is why I believe in writing and sharing my experiences like other parents out there so that hopefully my children can step in to a world where disabilities are considered but not made to hold those who have them back. 
Having children who have hearing loss is hard. I am forever feeling like I need to apologise for their loudness and their bluntness. My eldest has a mild loss and wears hearing aids and recently was bullied and told to stop staring at people. Yet when she explains why it becomes easier to understand when you are an adult but not when you are a child. You see she is not intentially being rude it’s just as she uses lip reading to help understand conversations around her, she looks at people’s faces and body language. If hearing loss was more talked about I feel that people would understand better. Another daughter with moderate hearing loss faces different issues, she struggles with high frequency words and again uses lip reading and body language to make sense of the world around her. Speech is such an important part of who we are and communication is everything. Not being able to communicate can become a very distressing and upsetting prospect. Relationships can become strained as there are barriers. 
Since the new born screening programme came in hearing loss is is picked up earlier and children can be given the care they need to help them but that doesn’t help others who do not know much about hearing loss. As a parent I tell people and are open with them that my children have a hearing loss. In previous years when my confidence was low this was extremely hard and I would frequently get embarrassed if people stared at us or stared at my children’s hearing aids. After confronting one person once about staring it became apparent that he was just fascinated as he had never seen young children with hearing loss and that he had always assumed it was an elderly person disability.
 After that I became more confident at being able to explain my children’s hearing aids as humans we are very nosy, intrested but most of the time prone to staring as we are afraid to ask. My children are no different and will stare at people in wheel chairs or people who are different from them which I teach them is wrong and that if they are intrested they should go and talk to them. My eldest has done this to a poor lady in a wheelchair. She wanted to know why and after speaking to the lady she assured me she wasn’t offended but rather happy that my daughter would take the time to talk to her. Don’t get me wrong I can’t speak for every disabled person out there but I know that now my children are getting older they would much prefer someone ask than stare. It’s how they learn and share awareness isn’t it?? 

Don’t get me wrong it’s not an easy task to teach any child right from wrong but teaching your child to accept k that has been started and we live in a world where everyone is accepted regardless of their disability.

The ADD diagnosis that another of my children has is the hardest disability as a parent to cope with. I find it extremely challenging as a parent as ADD and ADHD are still viewed by some as just a naughty child and how I must be a bad parent in some way spoiling my child or that it must be because I can’t cope. Having four children is also a no no in some people’s eyes. Thing is I can cope, it hasn’t broken me yet and the worse part is that some days it is not my child that causes me pain but the thoughts and actions of others. I feel I have to explain my child’s disability when meeting anyone new so they know straight away that there is a valid condition that makes my child act out. I feel shame and worry that old prejudices come to the forefront of a strangers mind and that they think I am being silly and I just have a naughty child, a bad apple amongst the four of them. I don’t!!!!!!
Having disabled children does make you open your eyes to the plight of others. I never dreamed I would have children who had disabilities. No one in my family has anything and even the children of my siblings do not have the hearing loss or ADD that my children have. The disabilities my children face are by no means life threatening or emotional as what other parents go through, but for us it can be our own tiny world of emotional turmoil. I still feel occasionally like a failure compared to my siblings. That I must have done something wrong to be the only one with children who are viewed as different. I feel shame when my children do something that is not perceived as normal but can be explained due to their diagnosis especially my daughter with ADD…….but I never fail to feel that love, protectiveness and proudness that I felt when they were younger and free of any labels. 

Everything thing that my children accomplish makes me feel such amazing warmth and awe and that as young as they are they will continue to forge a path through whatever comes and be amazing people ready to help anyone and pass on their strength and experiences to those that are around them.

Children are not born prejudice or judgemental, they are born inquisitive , looking for knowledge and accepting. It’s this that we need to encourage
To follow our story on Facebook search @Leannesihm
X Leanne X

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Sibling love, rivalry and life

The love and support of a sibling in my own life means so much to me. My sisters are always there no matter what, on good and bad days. Being the eldest of four, growing up there was no shortage of playmates and no chance for boredom. Now that we are older, there is always a shoulder to cry on, an ear to rant to and support whenever we need it. This bond has been an important part of my life and without I honestly don’t think I could have managed in the early days of having children and going through diagnosis. 

Sibling Awesomeness

Looking at my own four children it’s easy to see the amazing bond that they all share. Even with the range of disabilities they have, they are always there to love, support and annoy each other as only siblings can. Life is interesting to say the least. Each with their own individual needs they somehow come together. They are always there supporting each other when the need arises from cuts, bumps and bruises to just spending some quiet time together reading, drawing and story massaging… well, until the arguments start!

My eldest daughter, age 13, has a hearing loss which she lived with for five years before diagnosis. She is the rock of the bunch, always trying to help her sisters anyway that she can. Sometimes I feel that she takes on the motherly role too much and that she grew up too quickly but she’s always the peacemaker and will spend hours with her sisters playing games and make believe. There is no shortage of imagination in the family!

With two fellow sisters both also having a hearing loss, M is increasingly becoming my own little guru in understanding how my other two daughters may be feeling. As she says, “been there done that mummy, maybe this could help?” She tries to support them in the maintenance of their own hearing aids now that they are older, and takes great pride in being able to show her sisters the correct way to clean her aids. She also loves to cheer her sisters up by baking them cakes and letting her sisters help. This leaves me with an upside down kitchen but the result is always the same: happy, cakey children.

My second eldest daughter, age 12, is your typical teen and finds family life hard. She has no disabilities and can become frustrated with her sisters. I have been told that she has an old head on young shoulders but the truth is that she wears her heart on her sleeve and finds the noise levels and challenges of ADHD hard to navigate. But she is amazing at writing stories, poems and songs and will think nothing of writing amazing Story Massages which she then shares with her sisters. C will spend time using story massage and sharing what she has written with the whole family. C also loves to play on the trampoline with her sisters and they will literally be outside giggling like mad for hours. What she lacks in patience she more than makes up in love and the ability to cheer up people. 

Our third daughter has hearing loss and ADHD. Life is a challenge and having someone who is forgetful, inattentive and impulsive can cause a huge strain on the whole family dynamic. Not to mention the OCD which can see her rearranging her room daily and also trying to rearrange her sisters’ bedroom, but her sisters have now learnt to embrace this side of L as they have realised that they do not then need to tidy their own bedroom up! This said she is our cheeky monkey, who on a good day will spend time gardening with her younger sister, trying to help anyone who needs it. 

My youngest, aged seven, also has hearing loss. This one is the cheekiest of the bunch and she is able to bring a smile to anyone’s face even in the darkest of moments. Life viewed on the outside can seem harsh for my youngest as she has to compete with three older sisters, but she never fails to amuse. Always the prankster she can help diffuse an argument with her funny faces and voices which help to keep us smiling. She doesn’t offer much in the way of support to her sisters as yet but I’m sure as the years progress she will find her niche. 

Life with four children may seem daunting to some but to me it’s awe-inspiring. Living with these little people who overcome so much to get where they are makes me proud. Of course like most siblings there is rivalry, arguments, and full on catfights, but there’s also laughter, love and support. 

The bond that they all share is one I hope they will cherish for life. 
XX Leanne XX

Story Massage…..Imagination, Fun for All

Story Massage…… a wonderful massage therapy based activity that can be shared by the whole family. Wether we are singing songs, nursery rhymes or just telling stories for the last two years Story massage has given my children so much joy for the spoken language as well as becoming the staple relaxation method used in our house.

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Story massage was created by its founders Mary Atkinson and Sandra Hooper since 2007 to promote activities using positive touch within the home, school and wider field. These two amazing ladies run a training course which is where I first learnt how to blend 10 simple massage moves with stories. Story massage is used within some schools curriculum, care homes, respite, therapy session’s and by parents all over the world. Being such an adaptive skill set to have it can be used in any language and is especially wonderful to use with special needs and disabilities.

  •  Two daughters who have a mild sensorineural hearing loss and as such the positive touch used in story massage and the contact means that they are able to hear and feel the story.
  • Another of my other daughters has a hearing loss and ADHD and I find that the end of the day s a great way of using story massage to wind down and aide with calming ready for sleep.
  • I also have a daughter with no hearing impairments or disabilities who is just a teenager and she loves to make up stories and show her skill’s.

There is no age limit, no discrimination just respect, relaxation and fun. A great activity that can be shared by all.

For me story massage has enable my children to not only learn to positively interact with each other but to also aide their speech and language skills, phonic’s, writing and story telling skills, their concentration,  the ability to relax and focus, being able to learn about the environment around them and it is a skill that they will go on to use with their own children one day in the very distant future…..

I also find story massage is great to use as a rainy day activity, while waiting in queues, car journeys, talking about new and exciting subjects and at bedtime there is nothing like settling down to bed with a soothing massage to my off key tones of Lavenders blue, twinkle twinkle and other favourites.

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With stories in mind there are some days when my daughter is a little more restless than usual and needs idea’s for a new and interesting story. We have the wonderful book from storymassage.co.uk which has nursery rhymes and stories with something for everyone and the massage moves are there for you which is a fantastic book to take out and about with you. Our’s travelled to Scotland last year where we enjoyed story massage camping style.

So always on the look out for innovative idea’s that I can use I was approached by a wonderful lady at Ignite Imagination’s . This lovely lady create’s wooden story cubes. I was sent a lovely bundle of 6 cubes, hand decorated with a picture on all 6 sides. Well my daughters love them!!!

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  • they came in a handy drawstring bag
  • 3cm cubed perfect for slipping in your handbag and don’t take up to much room
  • you are able to choose which themed cubes you would like
  • they are colourful and robust
  • provide endless material for fun stories

We have fairy tale characters, clothes, food and then three cubes with various object’s on them such as a ballon, car, shield, chair.

When I took them out of the bag my daughters aged 7 and 10 were there within minutes finding pen and paper, rolling the cubes and coming up with lovely stories to share. Here’s a story they made up using the cubes….

A unicorn imagined an egg (circle)

But she magicked a fried egg instead (drums)

Then she magicked some trouser’s and top (wave)

And decided to go pick some flowers ( sprinkle)

When it got dark, she magicked a light (fan)

And sat down to eat her egg ( calm)

Eliza Age 7

Using story massage as a daytime activity with the cubes has been great fun and something that I hope to share with other parent’s and children when sharing Story massage with them.

Leanne

What an ADHD week…..SATS, Family and weekends

So before you start reading a warning, my head is feeling disjointed, please be aware may contain rambling…….

I find more often than not when I come to a Saturday I feel so tired I tend to do nothing if I can help it. It’s not that I am feeling low or depressed but after a week of being on the edge and the whole family tethering on the edge it’s nice to just kick back, watch rubbish on TV, baking and eating cake, enjoy the sunshine in the garden and just not to think about anything isn’t it?


Not possible when you have children and definitely not when those children have disabilities. You see their needs overtake everything. People looking in from the outside do not see. When your child has an unseen difficulty or disability it can be hard for them to understand what they can’t see. Yes I moan to friends and family generally because we have been caught out and they have seen how life can be, I am not ashamed of my child’s behaviour she can’t help it, but I sometimes feel powerless to help her. There is no respite, no down time and at weekends I find myself trying to snatch moments in the day where I can either slob out, breathe a few quick breathes or just try and empty my mind. Weekends are family time, time to be together with no real plans. NO!!! Really it just means Daddy is at home to help……..Going with the flow we try not have anything planned on a Saturday and Sunday which is not always easy as life steps in. 

After this week we need a weekend to just breathe and not do anything. The SATS as predicted caused stress and tension, tears and anger, frustration, sleepless nights. When you add in the build up the SATs seem to overtake everything for us from Easter onwards. Now that they are over there is a visual reduction in the amount of tension my daughter with ADHD is holding. She seems more relaxed and more able to focus on everyday tasks. Something she has been unable to do for the last week. Even just being asked to brush her teeth has caused an arguement because it’s something else I have tried to add into her already stressed out Day. The SATs have:

  • Resulted in tears and upset
  • Feelings of failure and that she is not good enough
  • Disruption of routine
  • Short frayed temper
  • Meltdowns at the end of the day
  • Bad dreams

This is on top of the regular feelings that are associated I feel at any age with taking tests and wanting to do your best. Just because my daughter has disabilities and difficulties does not mean that she didn’t want to do the best she could because that added even more pressure. She wanted to join in with the year 6’s, she wanted to do the tests, she wanted to do her best and make me proud. She makes me proud everyday, all of my children make me proud they all do their best and even my older two have had exams in high school and I am proud of their attitude and just generally a very proud mummy. I could ask that they work harder, I could ask that they concentrate better, achieve more but I feel with so much outside pressure they need the time to also just be children. I feel my job is to teach them life skills, to help them feel part of the family, to look after their health, wellbeing and happiness. School is there to teach them academics and while yes we read, I make sure their homework is done and I help them with revision I don’t want it to overtake important family time especially as I already have feelings of guilt about how my other children cope with their sibling. I worry about how me as a mum trying to deal with Hearing loss and ADHD effects the dynamics within my little family:

  • If I shout I have to shout louder if they don’t have their hearing aids in as otherwise all I get is “what?” About 110 times this just makes me a loud crazy mum
  • I feel like I am always referring arguements, and I don’t get it right and get accused of taking side which I try not to
  • I feel shattered by 9am mentally exhausted spending an hour solving disputes and arguments between the kids. Usually I have a least one storm out of the house.
  • The end of school comes and I drag my feet to school for pick up, most days I am already in a bad mood as I naturally start to anticipate the basic hell on earth if my daughter has had a bad day
  • When I feel low we eat more crap food because I can’t be bothered either that or we run out of food in the house bad bad mother


So here I sit with some old Doris day film on the tv, one daughter out on camp for the weekend, the other sat next to me while Dad helps with the younger two trying to keep them entertained while trying to cope with the effects of having no routine as it’s the weekend. Who ever said having children was easy

Take care 

X Leanne X

A mothers Decision…..ADD

Life can sometimes get in the way of writing or having the time to have 5 minutes in which to think and just breathe. 

I have spent the last couple of weeks as a mother of a child with an ADD diagnosis second guessing my role as a mum and the decisions that we have made as a family to help her since she was diagnosed. It hard thinking that 

  • you may have made a mistake
  •  maybe she’s not got anything wrong
  •  maybe she’s not that different 
  • Was she misdiagnosed 

When our daughter was diagnosed aged 7 it was a shock. It’s not something that we were expecting. What could be the source of our daughters symptoms was never really discussed and so I never looked into it. She had the sensorineural hearing loss and was seeing a consultant because of the hearing and for a long time we were told it was to do with the hearing. 

ADD came as a completely alien and unknown word but I trusted in the system and as a result aged 7 our daughter was diagnosed and put on medication. I remember going for a drink in the hospital cafe after and looking at my husband but not hearing what he was saying.

 At that moment I remember I felt like the biggest failure …..


As with certain medications our daughters eating habits have been drastically altered. Bottom line she won’t or can’t eat enough. So while waiting for a paediatric appointment we have taken the decision to not medicate at weekends. As the drugs she has leaves her system after 7 hours we felt that she would benefit from time out to help with her weight and food. Oh my god she does not stop eating she grazes all day on a Saturday and Sunday. She won’t eat large meals as she gets anxious about it but she will snack from when she wakes up at 4am until bedtime at 8pm. 

It makes you realise just how much of an effect the medication has though. I have found it tough and that she is a lot like Jekyll and Hyde. Without medication

  • She’s touchy feely to the point of annoying and it’s very inappropriate 
  • she can’t control her impulses and will do things out of the ordinary,picking up knives, throwing things, attacking her sisters and me, running outside
  • she walks around swearing, screaming  
  • she can’t sit still long enough for a story, watch a film or play
  • she’s even worse coping with change, authority and general family life. 

But she eats!!!!

It’s hell…..my other children are not like this at all. Maybe she is just making it up but the wild look in her eyes can be scary. It’s like she does not see me or hear me. She looks right through me with her eyes rolled up into her head and the noise levels….I have never heard a child get so high pitched. Her behaviour can be so irrational that Unmedicated we stay in the house. Unpredictability coupled with bad behaviour and the hearing loss would mean the chances are higher than normal that something bad would happen and so I feel for my sanity it’s safer to stay at home but at least she is eating!!!

But I feel so run down and emotional it’s all I can do some days to get up. Having no respite at the weekends really does a number on my mood for the rest of the week. Am I a bad mum for eagerly wanting my daughter at school Monday morning? Is it some kind of failing in my part,  I should be able to look after her, protect her, care for her? Shouldn’t I? I can’t afford good and bad days I have to keep it together…..People who see me must think I am just a moody mum especially at school pick up at the end of the day but it’s that knowing that the shouting, screaming will all start again once she is home and that I will be counting down the hours, minutes until she can go to bed and that’s not a routine or a state of mind that any parent should be subjected to. We should enjoy the time we spend with our children shouldn’t we? 


All that said and done as I climb out of the black hole I have sunk into the last few weeks I have to tell myself I am not super women, I do the best I can with help from friends and family. 

 

The days were my daughter snuggles up and tells me she loves me are the moments that I cherish and hang on to. 

Please feel free to get in touch 

Take care 

x Leanne x

Be An Angry Mother Bear

Having a child with a disability can add strain to family and friend relationships. You’ll need patience, resilience and sometimes an iron will to get you through the day. You will get angry, You will cry and some days you will feel at your wits end with comments said, looks given and you will feel some days you have no support what so ever. Support is a two way thing I have fond you have to give and receive even when raising disabled children. People can’t support you if they don’t understand what is going on.

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One thing is for certain I have learnt this the hard way. As human’s we need a support network around us, we need people around us who make us feel safe, loved and cared for and who can at times share the burden. This can be friends, family and even the professionals involved in our children care. For me personally building this support newtwork has taken years and I could only do it once I had accepted that my children are different and that their well being and happiness is more important than how I feel others perceive me. Don’t push people away like I did and don’t hide, be proud of who you are and who your children are.

From my experience raising a child with disabilities can take a toll on you, your relationships with partners and family and can also affect friendships. This is especially true for those who come up against prejudice and ignorance from those around them, harsh I know but its true. People may have a tougher time in understanding and accepting that your child has a disability.

  • They just do not understand and its this lack of understanding that in some cases can cause strife and upset.
  •  ADD and ADHD  used to be termed as a naughty child. It is now slowly getting the recognition that it is a real unseen disability but that change is not quick enough.
  • They may feel as awkward and unsure of what to do around you and your child as you do. I still feel I don’t understand what is going on inside my child’s head some days how can I expect her aunt or grandparents to?
  • I know people who don’t really understand what ADD is and it is not confined to a particular generation either. It is hard to try and explain and we are not medical professionals so my advice would be to speak from your heart. Let them see the good and the bad and make up their own choice.
  • There is so much media on ADD and ADHD with everyone having a say its sometimes difficult and confusing. I find getting people involved and not being afraid to show the harder side of parenting ADD much more effective. Let people in and their empathy will show through.

Don’t listen to the negative though, it’s your child.  Be an angry mother bear if you need too but just remember not all people think the same and that although some people are just ignorant, that there are others who genuinely just don’t understand….

For a long time I tried to cope alone!! I felt embarrassed that my children were different, I felt anger at the world and it has taken me a long time to not only accept that my children have disabilities but to also accept that I am in no way a failure and that they are each a bright burning star who will forge their own paths and be amazing.  Going through the motions of going to hospital appointments and caring for your children can at the beginning fill the void of family, friends and a support network but there is no substitute for that support.

Its hard yes and its frustrating and sometimes its down right annoying when people comment or do something you don’t expect. I get angry, I cry and I get stressed. Its natural but instead of hitting out I find myself just smiling at them and reminding them what amazing children I have.

I hope the people in my life accept me for who I am and if they don’t then tuff shit because I  am going to be the best mother to my children and to cope with what ever life throws at us regardless.

X Leanne X

Its not fair….Siblings and ADD

There are some days when I feel at my worst and I don’t understand why my daughter has ADD, or why she suffers with anxiety or even why my children were born with a hearing loss so how can I expect my other children to understand?

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I have talked previously about the often turbulent and volatile relationship between siblings when one has ADD but after a week now of daily tip tapping, swearing and screaming I feel like I am at my wits end. My ADD daughter is the third of four children. All girls!! I will not say it’s an easy task raising girls but I try to do my best. What I mostly struggle with is the relationship my daughter has with her sisters. Some days I blame myself and find it hard to come to terms with the idea that my children have difficulties and other days I manage to brush myself down and get on with parenting but my other daughters find it hard to process their sisters behaviour and they can not understand why (L) is the way she is.

  • I make excuses like she can’t help it
  • I try and ignore the behaviour which mostly just fuels further arguments with my eldest daughters
  • I find myself shouting and screaming at the wrong child
  • I blame all bad behaviour on her disability when sometimes it isn’t
  • I cry and get angry which then upsets all my children

It’s on these darker days that the behaviour and symptoms of ADD become more apparent especially before the medication starts to work. For two hours before school there is arguing,shouting, screaming, objects flying and general put your hands over your ears din. Some mornings I do not even want to get out of bed. With three children trying to get ready for school and one who is being disruptive, its mayhem and can resemble a battle field…..Yes girls can fight like cats and dogs and its not a pretty sight!!!

I feel so emotionally shattered by the time my children walk into school other parents must wonder what a miserable women I am! 

The older the kids get, the harder it’s becoming to be a mum. Its harder to contain arguments, disagreements and fighting especially when two of your daughters are the same height as you…There is also no negotiating with a child who neither understands, remembers or processes what you say. My ADD daughter finds it increasingly difficult to navigate the sibling situation. She is either going of the deep end at them, annoying them or being mean to them or she gets upset because they don’t want to play with her. I can’t blame them (L) may have forgotten that book she threw at them this morning or the slap she gave them but my other three do not forget and they don’t seem to forgive either.  Some days I do all I can to limit the stress caused by them.

I have to split them up, give them different directions!!  I often feel like I am waving my arms around like an Orchestra Conductor.

The guilt sets in about how my other children are coping with having a sister with difficulties/disabilities. On the outside they seem to cope well but the signs are there like yelling at me that its not fair. Life isn’t fair its hard work as there is no rule book, guide book or instruction manual. Some top tips I have learnt along the way

  • Give all of your children at least 15 minutes in an evening by themselves either talk about their day or do some reading. I have found this makes them feel important its not easy as you may get interrupted but persevere.
  • cooking….I try to involve the older ones in cooking for everyone. It gets them out of the firing line for a while and makes them feel involved.
  • always hug and kiss your children anytime anywhere. Make sure they know even if they have been naughty that you love them
  • sleep overs / days out…for the siblings of a child with ADD/ADHD family life can be hard for them. If at all possible arrange a day out or a sleepover for them with friends or family. It will give them time out and an escape especially if its been a stressful week.
  • Find an activity that everyone can enjoy. We use Story Massage a lot in our house for almost every situation. Story massage promotes relaxation, fun, concentration and it can also calm and bring everybody together.
  • Go for a walk. I find even just going around the block can clear the air and relieve some excess energy.

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Phew now I have written it down I may go have a cry and then brush myself down do some breathing and release the Stress and tension.Even on a bad day I never hate my children or myself and neither should you. Feel free to get in touch with me

x Leanne X

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