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

A day out, an Uneasy mumsy Prospect ADHD -Anxiety 

As a parent you would be well versed in the art of preparing for a day out with the family or friends. What happens though and how do you prepare for a day out with a disabled child. For me by the time I get where we are going I look like a haggled miserable cow which can make me cranky so apologies in advance if ever I meet you on a day out…….

Feeding the swans, my heart was in mouth though

For me I find planning a day out really hard. Although our daughter is nearly 11 there is so much to think about

  • What time are we going, do we have hearing aids, are we dressed…I don’t know about your children but mine are typical slouch around until the last minute and then panic stations to get dressed. I usually get L motivated by having a race to see who can get dressed the quickest…I win most days 😊
  • Will she cope with where we are going…..Proberly not but perseverance is the key mum’s and dad’s!!! Keep repeating and try not to give in as if you have other children it’s not fair on them. This is hard but I use to give in all the time till my eldest said that I always changed the plans just because of L. Made me stop and think
  • How expensive is the day out? You see if I pay say £50 to get me and 4 children into an attraction how long will we manage to stay an hour, 2 hours? I tend to find free or very cheap but fun places like Redwings horse Sanctuary. 
  • What do I need to take… Soft toy, fiddle toys, baby wipes, snacks and drinks usually grace my rucksack…I gave up with having handbags as they became so heavy a good pretty rucksack to hide all the bits and bobs plus baby wipes and drinks and snacks for you as well as your children.
  • How far away is the destination…I have to factor in travel time so I can tell my daughter how long we will be, roughly how long we will stay. I try to show a map of where we are going or my daughter will now google it so she can see how far she is going. Sometimes this helps and sometimes it doesn’t but at least I have tried to keep some sanity for my own peace of mind. 

It’s time consuming and some days it’s mentally exhausting and quite often I just can not face the questions, the tears, the anxiety and the stress of leaving the house. I would love to take my girls out everyday but it’s just not that simple. I can get them up, dressed and out the door that’s not the problem, it’s the endless questions, my daughter getting anxious and frustrated that makes me feel is it really worth it. 

Our daughter with ADD and anxiety just does not cope with leaving the house. Even to see friends or people she has known since being a baby or having planned to go somewhere she knows well, this I find hard as most people don’t understand how hard it is some days and how hard it is to relax once we have arrived at our destination when all I really want to do is go home and go to bed and start again. 

I find it frustrating and upsetting as I feel my children have had a rubbish holiday due to not being able to go out as much as I would wish. You see ADD is not just a diagnosis on a piece of paper. It’s not an excuse or just another name for a naughty child. It’s bloody hard work, consuming, irritating, stressful, upsetting. It makes you feel as a parent a complete failure. It undermines family life even when you don’t want it to and the worst thing is that even as a parent there are days that you will blame yourself, your partner/husband and even your child for the emotions that you feel due to ADD. Anxiety also affects the whole family as well as being dehabilitating and scary for the individual. Anxiety has started to impact my daughter more and more the older she is getting and the more she figures the work out and understands a little more. The anxiety is because she feels out of her comfort zone, she can not cope with a change of scenery or me planning anything. As a mum I try to help by

  • Staying calm……. this is very hard to do when you have other children around. The anxiety felt by one child seems to have a wave effect and everyone feels sensitive to what is going on around
  • Try to plan….. harder said than done as life is flexible and plans are not ridged. I have started to write everything down for my daughter in a pocket diary so she can keep track of where she will be and what she is doing. If plans change though and as a busy mum I forget to alter the information then this idea works against me and I often feel I am back at square one
  • Don’t plan something for everyday……having a very busy schedule can work and going out most days can also help with hyperactivity and attention but I now feel that my daughter sometimes just needs days at home in her pj’s to play with her dolls and relax. Again this can backfire with sibling fights, boredom resulting in screamaing and stress but slowing the pace some days also gives me a chance to wind down and not have to be getting the kids ready and rushing about.
  • Don’t ask my daughter what she wants to do…..this could be construed as controversial but unless you are willing to do exactly what she has suggested you are just setting yourself up for a fall and an awful lot of stress if the activity they wish to do is not feasible. 

Sitting here now watching my daughter react to us going to the park this morning. She has known we are going for two days and up to last night it was all she could excitedly talk about but this morning the realisation has kicked in and my daughter is worried and rocking and hurting her younger sister because she is worried about who is going to be there, what time we are going, if it’s going to be wet, how long we will be, what can she take with her, anyone else have this?
It’s at times like this my heart breaks. My other children accept where we are going and can’t wait to go and have fun while L feels scared. Is it the right thing to take her out, how would I feel if I was made to go somewhere I really didn’t want to go….in honesty there is such a place and if I am told I need to go there my heart races, butterflies start up in my tummy, my palms get sweaty and my mouth feels dry. To have to feel these symptoms everyday for what you or I would deem trivial everyday life I just can’t fathom. I think my daughter is amazing to do the things she does and to have me making her do things though am I making her worse or helping her to overcome?

Days like this make it all worthwhile

Life with kids is amazing, awe inspiring, full of love, happiness, tiring, hard work, frustrating, heartbreaking, but we do our best we find what works and we do the best we can. It’s all we can do and even on bad days I hope my children know just how much I love them and how I would move heaven and earth if I needed to for them.

Happy Easter, hope you all get some rest and precious time with your children.

Xx Leanne xx

Transitions, EHCP Ramblings…..Sloppy Life in Realtime

The last few days have been the hardest I think I have had for a long time. My brain feels like its on auto pilot, its on a non stop rollercoaster and I can’t see the end. I am screaming on the inside while trying to look normal for my children, family and friends. So sorry but here is as good as it gets my brain is fried, here are my ramblings…..

Why….

EHCP’s, Transition to high school, impending residential trip, family holiday’s, work, hospital appointment’s, general life……

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holidays planned

As a parent of children with disabilities life is never quiet or simple or normal…… there is no getting away from it watching my sister’s I envy them some days because everyday there is something else I need to remember, something else I need to do, to tell, write, ring, order, the list goes on and on. To have a bat shit crazy couple of days feeling like a legless jelly baby who hasn’t a clue what they are doing is normal right? Life gets to us all so if you see me in the street with a bright red face, unbrushed hair, no makeup and looking like I walked of the page of a 70’s catalogue its because I am trying to be a mum, carer, advocate, researcher plus everything else. I go to sleep dreaming of the printer and what its going to spew out next, I wake up to the face of my 10 year old daughter grinning at me before commencing with the first of many rude words, screams, shouts, tear’s or just plain crazy bouncing of the walls until the medication kicks in and she can calm down and concentrate on getting ready for school.

The life of any parent is filled with ups and downs….

Its no different for any parent, we all worry the same, we all do the best for our children the same way and we all have good and bad days thats what I keep telling myself.

So why do I feel like I am loosing the plot well the EHCP for example….theres so much conflicting information out there I feel inadequate in my role as a parent in best supporting my child. Anyone who knows what and EHCP I bet knows what I mean. For those of you unsure its the education, health and care plan which is for those aged 0-25 who have additional needs and is there to coordinate your child’s educational, health and social needs and it also sets out any additional support that they may need. To me its a mind field, another obstacle which I have to try and hurdle over but with amazing people behind me and with the right knowledge I will go blindly forth and try and get my daughter the support that she needs to keep progressing and being able to live as normally as she can and be able to access everything there is to offer in this world.

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Hanging around in her hammock

Then couple this with the impending transition to high school and I feel like a first timer when in fact this is my third child to go to high school. In reality I think I am unprepared mentally in the back of my mind we are not near that stage but in reality we are. This period in our lives has crept up on me so quickly that I haven’t had time to process it never mind my daughter although after a positive look around the school she hasn’t mentioned high school since. With my older two its all they talked about for months before starting year 7. Here in lies my biggest worry as I am unprepared and so is she and it also makes me realise that maybe some part of me has not fully been able to process that my daughter has special needs. Does that make me a bad parent, I don’t think so its just I have tried to stay strong and keep things together and try and make life as normal as I can for my family when in fact I am scared that if I drop a thread our whole family existence will start to unravel like it did 4 years ago.

Raising disabled children is a juggling act. There are so many balls that I am afraid to drop but I have managed to keep them all in the air so far but when there are balls added like high school, the EHCP, new appointments, referrals I am so worried that at some point I am going to drop something and as a parent thats what I have nightmares about.

So tip to myself…..look after myself, take a break, delegate, ask for help, have a massage

take care

x Leanne X

Perfect Parent, imperfect parent….Really??!!

 Is there any such thing as perfect parenting? Or is it just an outdated way of trying to make parents tick all the boxes and, when we can’t, making us parents feel like failures?For those without disabled children the list of guides, self-help books, factsheets and social media sites are endless. Round every corner there is advice for you to follow and ways to achieve that title of the perfect parent. For those of us with disabled children there is not so much out there on perfect parenting, but as a parent one thing is abundantly clear to me…. not every child is the same regardless of whether they are disabled or not and not every child is the one you will read about in baby books. Why? Because they are all as unique as each other. Having four children really makes you see this. Not one of them has developed at the same rate, according to statistics, or even experience life and their environment in the same way. 

 

I could read a range of fact sheets, views, blogs, and websites and feel that I am a failure as a parent. I can look at the parents around me and compare my parenting skills to theirs and find myself lacking when it comes to being that perfect parent. I have high spirited girls who love to interact with the world around them but because they have hearing loss they are louder, one has ADHD so her behaviour is not the same as everyone else, she stands out but that does not make me an imperfect parent!!! It makes me a parent, a human being, a person doesn’t it? 

How can there be a thing called perfect parenting? Don’t most mums and dads  think they are doing the best that they can? The media, social media, specialist’s and family members all play a huge part in making us feel like we have to conform to the image of a perfect parent when in fact we are all as unique as our children and as a parent of four girls I feel I am learning new ways to parent my children every day by trial and error not by following some guide or book on the subject. 

 The last 13 years have really been a learning curve and it’s been really hard to not compare myself to that perfect parenting idea where your children do what is considered the right thing/way to do something… treading water here as I can honestly say I have not read a parenting book since my eldest was four years old. Saying that, light hearted programmes are now being made such as the recent “Parenting for idiots” on channel 4 showing even famous faces have parenting blunders. This makes me smile but makes me wonder why we still try to live up to expectation which leads us to doubt ourselves and can in some cases lead us parents to feel like we cannot cope!

 Raising our children today is very different from when my parents raised me 30 years ago, more of us parents work, technology plays a huge part in our lives and parenting has changed with advances in knowledge. Surely it’s time to be more accepting and not put people into boxes, classifications or categories. In my opinion there shouldn’t be this pressure to be like everyone else. We shouldn’t feel pressured to conform to a set of ideals which we can be seen as failing in. None of us are failures. Religion, age, personality, traditions; we’re all unique so why can’t our parenting skills be viewed as unique? 

I feel perfect parenting is sneaking into your child’s room at the end of the day to gaze on them sleeping and feeling a huge rush of love for them no matter what has been thrown at you that day, its taking care of them, protecting them even when you have hospital visits and you don’t know what the outcome will be. It’s watching them grow and learn and being there to catch them when they fall.


 Parenting skills and Disabled children……

Having disabled children who are seen as different and challenging really impacts on how society views me. One noticeable trait of being a mum to a child with hearing loss means that I have to speak louder than other mums. This used to be really embarrassing when out with other parents at toddler groups etc., my children are louder than others and the old saying children should be seen and not heard would never fit with my girls. Then there’s ADHD which has so much stigma attached to it mostly due to the way it has been viewed in the past as a naughty child and of course that old philosophy of bad parenting.

Am I a bad parent? Does struggling to raise a unique, beautiful child struggling day to day with memory loss, impulsiveness and a range of associated ADHD comorbidities make me an imperfect parent? I do not view myself as the perfect parent but I am not a failure because of it. I try to remember that I am unique, I am not perfect but I am raising my children the best way that I can with help from friends and family and being the best mum that I can be. 
X Leanne x 

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