Introducing Max – Special Needs meets Special Bear

A special Item

Many of us know the power we place in objects that are special to us. from special toys as children, to a favourite pillow as an adult. At some point in our lives we all have a special connection to something inanimate, something which can make us feel safe. This is especially true for children who from a very early age can become dependant on those favourite teddy, dolls, toys.

Our children have all at some stage had a favourite teddy from Bessie who has done a few hospital stay in’s to a heatable polar bear who has travelled the length of England and I am pleased to say even my eldest two who are now high school age still need the love and security they get from that special teddy although hidden out of site.

Special Needs, Special Items

Having a child with special needs can make the task of having a favourite specific teddy more difficult. The need to ensure he never goes missing is always paramount and so the best advice if you are able too is to buy more than one of the same ted!! But this blog isn’t all about those first teddies who we keep and love forever. This is a blog about something new. This is about two of our daughters, one who struggle’s with anxiety daily, has hearing loss and ADD (Attention deficit disorder), has struggles and fears about high school and another one of our daughter’s who struggles daily with hearing loss, possible neurodevelopment issues, anxieties about being away from mum, adapting to her surroundings and their new friend Max MindPower from www.max-mindpower.com

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Who is Max?

While waking up one morning a few months ago something caught my attention on the news. The BBC were filming a segment at a toy fair and there was a lady talking about Max Mindpower. It was a very brief report but something struck a cord with me. After quickly jumping on the internet what finally captured my full attention was not only the appeal of a cute bear but more than that was the story of how this bear came into being.

You see Max is a Mindfulness bear invented by Nikki with the help of others. The back story of how he came into being is amazing. The story that Nikki briefly touches on, on her website is one of determination, hope and amazing resilience, All things that I hope my children will have as they walk through life. So Nikki having gone through such an ordeal personally still had the care, compassion and fire to put her own experiences into a beautiful product designed to give back to those who use him using a simple meditation technique and stories. Whats more Max can be used by adults and children alike, with or without disabilities.

Max comes in two sizes

Max mindpower junior

Max mind power senior (who we have)

Both Bears have three guided meditations which are Body scan, Mindfulness of Breathing and Kindly Awareness plus a Neuro-linguistics exercise which is designed to help capture good feelings. Max works through these meditations with you and even breathes with you. His amazing tummy goes up and down which is amazing for those that need a more interactive, visual element to keep them focussed and engaged.

Each bear also come with their cute little jumpers and a backpack in which to keep the accompanying books. For the cost of these bears £29.99 and £39.99 respectively they really are great value for what you get and the after care is brilliant.

Max at Home

We have had Max Brown as we call him for a few months now and he is a wonderful addition to our family. Initially he was used a comfort aide, taken to high school, and brought out when my daughters anxiety felt a little overwhelming. Then we started to work through the story which comes with max, “The story of Max MindPower” which is about how he came to be. This is a special part of who he is and the books are written so that children are fully able to engage with Max and for my own daughters they feel a connection with him.

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Next came actually using Max to stop, sit down, think about and release those bad feelings that my Daughter was having connected with her anxiety. We use Story Massage  www.storymassage.co.uk as a family to write about our feelings and use massage as part of our routine as a relaxation method but by combining this with Max who talks you through a short meditation routine, we have been amazed by how much he has helped L with her feelings of worry and how when she needs 5 minutes of calm and that extra incentive to relax max is there ready and waiting to do what he was born to do.

He really works, so much so that as a mum I have used him as well. You may think I am crazy, a 34 year old women using a talking teddy bear to help me refocus and relax, but when the kids have gone to school and I am feeling stressed from the school routine and I need to relax before I start work as a Massage Therapist, just 5 minutes with Max and I really feel like I am ready to face the day.

He really is a part of the family and Nikki his inventor is such an wonderful role model for anyone who needs that little bit of help and support and to know that even when bad things happen, with love support and the right tools our children and ourselves can be really amazing.

Check out Nikki’s website www.max-mindpower.com for more information and to start your own magical journey.

XX Leanne XX

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Time to Be kind to Yourself?…..It Is for Me

As a Mum of any child it’s important to have time to recharge your batteries, time to breathe, to think, to relax and to be something other than a Mum. For those of us who are carers as well as mums this is even more important for both our physical and mental health.

Well pants I have not taken a leaf out of my own book and now I am at the point where I am exhausted and unwell. I typically try to relax and recharge once a month but with Christmas and work and appointments I just haven’t had time to think about me when the needs of the girls are fore front in my mind. It wasn’t until someone else noticed that I was having absences that I had to ‘get real’ and get myself to the doctors. Stress can do wonderful things to your mental and physical health and it can affect people in different ways. Hopefully and I sound daft I know but I am hoping that that will be the diagnosis as stress I can deal with, I can tackle it and get better. If it’s anything else then no idea, I can’t think that far ahead.

So here is the bump in my road, I now can’t drive pending tests for what I think is stress but not being a specialist, and having disabled children to look after I can not take the risk it may be something else. Now I can’t drive, I’ve surrendered my license and I feel like a failure. I can not get my daughters to school, to appointments, I can’t even nip out and get a load of bread. I’m stuck and for the first time in 12 years I am having to rely on the help and support of family and friends to help me. I feel like I have been firmly put on my arse and that the universe is staring down at me with a critical eye waiting for me to break down.

I have spent so long priding myself on doing the best that I can as a Mum and as a carer that I failed to see the warning signs. Being able to take time out has always been the way I have coped be it nights out, massages or even just a cuppa with a friend or sister. The last few months have been a little more stressful than normal with L starting high school in September, the interruption to routines caused by snow days and having another daughter having tests resulting in more appointments has meant that I like every other parent has had to prioritise time for myself against the needs of my children. Who wouldn’t do the same? I am only 1 person and even with a great support network and an amazing husband who does as much as he can we are still only 2 people at the end of the day. These are my girls, I am their Mum it’s my job to look after them and I feel guilty if I can’t so I give up my time for them.

So universe I am going to get back up and get better. I don’t know how but I know with the love and support of the people around me I’ll get there. I’ll get better and then I’ll make sure I have time for myself in order to look after my own health and well-being.

Take care of yourselves, be kind to yourselves

Xx Leanne xx

9 years of world book day…..ADD-Back to Normal

It’s been a hell of a few weeks. Ever since world book day was announced my youngest has been bouncing of the walls excited to be out of the confines of her school uniform and getting to dress up. Although to be honest she’s a bit of a tomboy and so unlike her sister (L) the usual easy princess dress was not going to cut it.

After careful planning which involved looking around the house for the easiest non crafty, no hassle option I saw Dads flat cap sitting there and was reminded of one of my favourite books Burglar Bill, which E just happens to like as well ( or maybe it’s because I quickly slink into an accent from my childhood which brings forth the giggles) getting my youngest prepared with her costume yesterday morning for the belated world book day I suddenly realised that I have been getting world book day costumes ready for the last 9 years and that I still have another 3 years to go!!!

World book day 2013

That means between the 4 children Reception year to year 6 I will have created, sourced, bartered and paid for 28 costumes all for one day. How crazy is that…….

World book day is great but for the parents out there that struggle with children who have additional needs and routines it’s a nightmare, the constant worrying, tantrums and all out cat fights over who is going as who makes me glad that the high schools do not participate. Plus my children won’t recycle outfits either which I find annoying as L use to fit in the same outfit 3 years running but nope wouldn’t wear it more than once.

Now I love a good costume as much as the next person or at least I live the idea of it!!! but I hate the aggro it causes and the stress all for one day. I hate the arguments in the supermarkets with their massive selection of brightly coloured costumes that scream to kids “you need me now!!!” Yeah cause as a Mum of four I am going to pay £15 per costume per child each year…..erm no which then makes the rest of my shopping journey hell with shouting, prodding, hitting, bribes and anything else the girls want to throw at me. If I had a pound for every bedazzling display placed right at the front doors of supermarkets and the ensuing tantrums that follow I would be a rich women. Saying that as a Mum I have found the convenient, less stressful shopping experience of doing it all online. No aggro no bribery no tantrums and best of all no dedazzing, make Mum feel crappy displays.

Any way back to normal today, outfit that was agonised over for weeks discarded on the bedroom floor there to stay until Mum picks it up…..Happy world Book Day

X Leanne x

You, Me and ADHD

 

Putting my hand up in class….no way
Going up on a stage to preform….not me
Talking to people I don’t know…is there anything worse
Feeling out of depth in new situations…yep me

 

This use to be me and I bet its a lot of other people out there too. I had the confidence of a gnat growing up and into my early adulthood, and even then I think a gnat would have slightly more. I use to be shy, hated talking to people I didn’t know, would always be the one on the edge of the group, nodding and smiling wishing I was anywhere but. Having children at first didn’t change this. Yes I went to toddler group’s but made sure I went with someone I knew. I hated going to the weigh in clinic and I never asked question’s and I just did what I was told.


To be told that your child has a disability, special need’s and needs regular check up’s, investigations and so forth didn’t really change how meeting new people made me feel. I hated every appointment in the beginning, would nod my head and give permission but it was like there was someone else inside me answering. I would get butterflies on the way to the hospital for hearing check up’s and get myself all worked up, I would sweat, feel sick and then I would break down on the way home, disappointed in myself as there were questions I wanted to ask and I was too afraid to ask them.

For me I realised that this had to change, that I had to become the carer and voice that my children needed me to be. My daughter was 2 when she was formally diagnosed with a hearing loss and 7 when she was diagnosed ADHD. A big change in my confidence, and strength levels was needed.


I started by accessing online forum’s, talking to people online started to give me the confidence to get the answer’s I needed from the people we were dealing with in our daughter’s care. Being on a forum also gave me confidence to talk to people about my experiences and also to offer advice to those just starting out on their journey with parenting a child with disabilities.

One big recommendation would be to have a note pad and pen and jot things down that the doctors and specialist’s say in case you want to research them and keep that notepad in your handbag, coat pocket so that if you think of anything you can then remember to ask at the next appointment. Its easy to forget long words and to in some cases zone out when you are given news to process, and having to wait weeks for the write up letter to come through so you can remember can sometimes put you on edge.

I had to dig down deep but I decided that I needed to put my children first instead of my own discomfort at talking to people. I became my daughter’s advocate, her voice in a world where adult’s make nearly every decision for her. My confidence does still waver from time to time but I remember that I am doing it for these four amazing girls who are all looking to me to be their role model and for the families who are diagnosed daily and are placed in the same position I was …no way am I letting them down.


If you want to know more, please do follow our blog at http://www.leannesihm.wordpress.com

 

You, Me and ADHD

So your given a diagnosis of ADHD or ADD or any other variant, your sent home with a box of medication, and told you’ll be sent an appointment for a review in 6 months……WHAT NOW???


Well first of you’ll be exhausted from managing your child’s symptoms, having regular appointment’s, assessments, trips to the hospital’s and you’ll be feeling pretty crap. You’ll also be feeling like a complete and utter failure as a parent all the while trying to keep your child from imploding, your relationship and family life on the straight and narrow and did I mention wondering what the hell you do now?

For me I went on auto pilot, I did what needed to be done at home, I tried to be there as a wife and a mother, I tried to hold down a job but I ended up letting some of the balls drop.

  • I took my children to their appointments, I cared for them, loved them no matter what but felt annoyed at times, lost my temper with them and was stressed out
  • My husband and I drifted apart, I would take all my anger and frustration out on him, we shouted and argued and he eventually went and found someone else that would give him time
  • I took myself away from family and friends while I tried to deal with the symptom’s and the ever increasing feeling of guilt about medication my daughter worried about what they would think and feel
  • I gave up work, being able to talk to other adults about grown up non Homelife topics

What I want every parent out there to know is that there is no shame in dropping a ball!!! Any parent who has children can at times feel stressed out, unhappy about their lives and the way that having children can feel like the very life is being sucked out of you. Thats normal, and its especially normal to feel that way when we have disabled children. To many parent’s do not give themselves a break, we deal with so much when caring for a disabled child no matter what the diagnosis is. Some parent’s I know go through so much more than I do and I am in such awe of them that it gives me the strength to do my best for my own children.


Living with hearing loss is annoying when you can’t hear yourself think, it gives you a sore throat shouting louder than normal so they know I am angry, its fiddly trying to replace small part’s on hearing aids and when the kids are younger I could have had a dozen heart attacks thinking they had swallowed batteries but its manageable. We learn and adapt just like our children learn to adapt to a world where one sense isn’t working like it should.

Living with ADHD is harder. Its an invisible diagnosis which to many people still see as just a naughty child or down to bad parenting. Trust me when you have had a bad day anyway and someone suggest’s your parenting skills may be whats wrong…you do not want to be near me. The grown up thing to do would be to say “ok its my parenting so why does only one child out of four have the symptoms” my childish side just wants to bop them on the noise…. and another horrible word that has been associated with my child….spoilt!! spoilt my arse, I do not spoil my children and I hate that even in todays society people still can not accept that ADHD exist’s. Hello its been documented since the 1700’s!!!

So here’s a little checklist from me to you

  • Give yourself a break, take Time to digest the diagnosis
  • talk to somebody either a professional or someone that is in the same boat as you, swap tips and advice
  • research – there are some really good websites/groups and forum’s about with people in the same place as you
  • don’t cut out family and friends – you really will learn the power of friendship and know the love of family when you have a child diagnosed, they need you as much as you need them, talk, ask for help or even just a hug

To find out more about You , Me And ADHD, follow our blog

xx Leanne XX

 

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

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