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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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

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