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

Relinqushing control to someone else

As part of my ever growing mantra of trying to give my daughter as many opportunities as possible to lead a normal life and have as much of a normal childhood as she can I do at times feel anxiety, fear and tear’s. Its daft maybe to some people that I feel this way but having spent the nearly 11 years raising her, learning as only a mother can and also learning sometimes the hard way how to care for her additional needs I suppose I feel guilty that I am sometimes not the one that she will need or turn to. We are in a particularly stressful part of our lives at the minute what with the inevitable transition to high school (Blog to follow) and the fact that she is quickly turning from child to teenager, I sometimes wonder what the hell I am doing, am I doing things right and am I actually giving her the opportunities she needs or am I holding her back!!

What has started this train of thought….My daughter’s first Scout camp.

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Now first things first this isn’t an ordinary case in any sense of the word. You see my husband is the scout leader and a part of me feels that if this wasn’t the case then I wouldn’t feel comfortable letting her do something that to others would seem mundane, a part of growing up. In fact I hate that I am not in control of her wellbeing. Instead of relaxing and feeling like I have a weekend to spend being me I feel worry and anxious even though she is with her Dad. Does anyone else feel like this?

I know that through choice I am my daughter’s main care giver. I attend all the appointments, make most of the decision’s, ensure she is cared for, has what she needs. I am not saying my Husband doesn’t do anything, he is there when I need him, to talk to, care, give a supporting hand, earning money to allow us to have nice thing’s and holiday’s but I do selfishly feel like it’s my job alone to do what needs to be done. I work tirelessly as many other mothers of disabled children do to give the best I can and to ensure that all my daughters with additional needs get the love and support they need to be the best that they can be. To the outside I can appear as an overbearing protective parent, but isn’t that what we are suppose to do regardless of wether we have disabled children or not?

I also very often feel the stigma of having a daughter with an invisible condition. I feel the ever present need to explain my daughters actions and prepare people. Its exhausting never mind the phone calls, meetings and appointments that go hand in hand with any disability. So you would think I would take this weekend to relax and take a step back but I can’t, here I am writing poring my feelings into this blog in the hopes that even just one of my thoughts or feelings helps another parent who may be feeling the same. Its my way of coping and even though some may feel I am airing my dirty Laundry I am not ashamed. I am not ashamed of my children or myself. I think of it as a way of helping my own mental health cause I can tell you that sometimes when theres no light at the end of the tunnel I could well feel like I am descending into a pit with no way out. My children are my light and I keep going to be the best parent I can be for them.

So my daughter is armed with medication, her Dad the scout leader and two of her sister’s who are fellow scouts and is of enjoying camp fires, late nights and amazing activities like kayaking. Her every need will be met but I will still worry until she is back here with me. Like I said I am daft….

x Leanne x

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

Why I Feel Guilty……mummy Time Out

It’s Saturday late tea time and I am sat in London Liverpool station. As a mum I don’t often get time to go away. Who does? We spend our time looking after the kids, the house, the pets, other halfs if in the picture and quite often we are working parents. 


Life with children who have disabilities and additional needs can mean that more often than not we also have appointments, caring for, fielding phone calls, chasing specialist’s, administering medication to the children to factor in. Time is something that can slip away really quickly. One minute I am in April the next it’s May and I stand stunned for a moment as can’t remember what day it is. This happens quite a lot it’s why I have become somewhat a control freak. My diary and phone have become my lifeline. Without them I wouldn’t know when, what or where and I become increasingly panicked if something creeps on that wasn’t in the plans. 

I like routine and although I don’t have any additional needs I do realise that on some level I understand my daughters need to have a routine and the helpless feeling that she feels when the routine gets interrupted.  Even if at the time it can become frustrating adhering to a routine. It’s that feeling of OH MY GOD, it’s like a lead weight and I feel more often than not I become moody and irritated when the day I have planned goes basically tits up which let’s face it is a common occurrence when we have children. 

So here I am tried but having had a great time away with friends. We have walked to Buckingham Palace, saw Clarence House, had a cocktail in the ice bar and a wonderful meal at a Gordon Ramsay restaurant. It’s been lovely to have grown up conversations, a chance to unwind although my feet are killing me and just time away from the normal weekend routine of children, husband, chores ect.


But sitting here I am starting to feel really homesick. I love being a mum, I moan and grouch and sometimes feel like my world isupside  down and that I am so low I feel I could walk away but some time out and r&r does wonders. Just one night away and I am missing my girls so much. I am counting the minutes to the train arriving because it will take me back and I will soon be in the thick of it. An early morning wake up call may make me backtrack in the morning though 😆

No seriously 😀 every mum has points where she feels low and I suppose the moral of this blog is please take time out for yourself. We are only so strong, we need to take care of ourselves as much as we take care of our children. If you find your losing your temper a little quicker with them, getting irritated quicker then it’s time to take that step and take some time. Read a book, go out with family or friends, put your feet up have a bath anything that helps you relax. Just take some time for yourself. Any amount of time from an hour to a night away can help you feel better able to cope and can mean the difference between a happy healthy mummy and an unhappy one. I love my children dearly and don’t ever want to feel like I have let them down, which on a bad day is how I feel. 

Take care all

X Leanne X 

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

SATS, stress and Relaxation 

The last few weeks it’s been nothing if not stressed in our house. Our daughter with ADHD is about to face her SATS along with other year 6’s next week and for us as well as I suspect many it’s been a bumpy ride. 


Having ADHD means my daughter has symptoms of inattentiveness, impulsiveness, concentration and working memory problems. While medicated during the day once home the panic of not remembering can cause outbursts of anger and frustration making my job at home all the more harder in trying to keep her calm and in harmony with the rest of the family. This along with Anxiety, hearing loss and the general feelings of stress that taking exams can cause has me counting down the hours to the end of this coming week. 

Today we have done no revision if it’s not in her memory now then the chances are it’s not going to be in there. We have tried to keep her relaxed and calm not an easy feat. Repetition, outbursts and continually checking her bag, her schedule, where she is going and what she is doing is her way of trying to control something. Control is something I think we all look for and without it we can feel displaced. My daughter tries hard to control every aspect of her life that she can. It’s how she feels and even if it’s not always easy to live with her feeling out of control is even worse. 

We all remember exams and how they make us feel. I had an exam in December and I aged 33 was petrified. Afraid of failure, not being up to scratch and generally not believing in myself. To think that my 10 year old daughter is feeling the same emotions now as I did then is heartbreaking in itself. I wish they didn’t have to sit tests at this age. Isn’t it better to let them learn and progress at their own rate instead of pushing them to learn what they need to know for an exam? 

Anyway so no revision this weekend and no I don’t feel that makes me a bad mum. School are their to teach her academics I am here to teach her life skills. I am here to teach all of my children that life Isn’t just about revision and sitting tests. It’s about looking after themselves, working to their strengths and being happy and healthy. Stress can have such powerful symptoms both physically and mentally and do we really want our 10/11 year olds to feel this. 


Today we have had fun, relaxed and used story massage to be creative and to relax. Being able to share massage with my children is an amazing thing. Being able to help relieve some of the symptoms caused by stress and anxiety through fun and stories is great. Being able to talk through how we feel and put Massage moves to our words really brings my daughters imagination alive and helps her to put into words what she may otherwise struggle to express or express through anger and tears.  Find out more at http://www.storymassage.co.uk 

Hopefully by the end of the week we will all be feeling more relaxed. 

Take care

X Leanne x

Routine….Where’s the Spontaneity in That?

Routines

Routine for us as a family is the basically the difference between a good day and a bad day.  There is no flexibility, there is no common ground, its the routine or the highway as far as I am concerned.

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Helping to cook encourages eating

Routine is such an important part of my daughter’s life, from the way she sets about her morning to how she copes with planned events, holidays and general everyday life. Without a routine my daughter can be left feeling bereft and disjointed in an already confusing and sometimes overwhelming world that she lives in. Being able to do anything in a way that helps her to stay connected to the rest of the family can mean the difference between her being happy and contented to being frustrated and generally unable to cope. Trying to balance this need for routine with three other children can at times cause strife and I am on lots of occasions accused of favouritism, but this is not the case. As children they do not see the struggle it is to try and keep everyone on an even keel. Having your life to an extent ruled by routine is difficult and frustrating but having a daughter with ADHD means she struggles with memory problems, impulsiveness, concentration and being able to adhere to a routine can mean the difference between her being able to function or having that meltdown that all parents dread.

In some form or another we all have a routine of some kind in our daily lives. From how we get ready for the day to how we move through it and how we end it. For me routine starts when I open my eyes getting my self ready and the girls all ready for the day ahead takes the same form everyday

  • wake up then wake the girls up
  • washed and dressed
  • breakfast
  • hearing aids in, hair brushed
  • coat and shoes on bags on

If I have managed to get the children all ready to go by 8.20am its a good day and means that having a routine in place has worked even if for me it feel’s like I have crammed a weeks worth of stress into 2 hours.
Never let it be said that the job of a mum or dad is easy. First thing in the morning until the children are all safely behind the school doors is the most stressful time of my day. Four children each trying to go about their own varying routines while co habituating in a small house brings that sense of cold fear when I open my eyes. There are days when I just want to bury myself under the duvet and pretend that I have no responsibilities, no reason to wake up and get going.
Having a young family is not all plain sailing even when you have great well thought, well meaning routines in place. This is never more apparent than in the school holidays. The effects of not having a routine during holiday’s is amplified because my daughter with ADHD relies so heavily on a routine and of course when there is no school day which is structured this can cause Anxiety and panic, a whole lot of shouting, fighting and stress for the children as well as me. How do I cope erm lets say on a bad day I don’t, I struggle hugely to get the motivation to carry out the same routine over and over. Its like my favourite old saying of “ground hog day” over and over. Everyday has to start and finish in the same way. It drives me crazy sometimes, wishing that for just once we could do something spontaneous.

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Not at all Happy at being took out

So basically for me routine is the difference in being a crazy, out of control frayed round the edges mum to a semi calm and collected mum who after a strong cup of coffee and 5 minutes of quiet is ready to face the day after the school run. Until the end of the day that is. I love being a mum, I thrive on their happiness, watching them grow and learn and if I have to live with routines then so be it.

XX Leanne XX