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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This is My Life……Mum in Nose Dive

Its me,

I’ve been so quiet lately and its time to admit that I am struggling. I am struggling to work, look after the girls, the husband, the house, the animals. I’m struggling to sleep and function, feeling like I am on the edge of a vast black hole. I’m so tired of fighting to get the best for my family, so tired of being told “no we can’t help” or “no you don’t meet the criteria”, “no we can’t do this” and “no there isn’t anything we can do”. The last month has felt like I have been hit from all angles, medically with my health, financially trying to budget as I haven’t been able to do the job I love as much, housing cause god forbid I live in a housing association house which is too small as we are always outpaced and out priced trying to get a mortgage and then when I had to give up full time work to be a carer well enough said, then theres the girls and their daily struggles with their disabilities, hormones, education and emotions.

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You see my health has taken the proverbial dive and now everyone starts acting like meerkats sticking up their heads offering help when the time comes, waiting like vultures to see what my diagnosis will be at the end of the month and it makes me feel sick. We have never asked for anything, whats the point when there are parents with children who have bigger struggles than ours who don’t get the help and support and having tried to get EHCP’s in place twice I just gave up. Professionals always like to look like they are trying to help and refer you but after waiting months for a reply they come back with “your Childs needs are not bad enough” what the hell does that even mean???? why does everything have to take so long and why do they still never really listen to you?

Council has been at it with “No you can’t have a grant as your daughter already has her own room “- yes but we have two other disabled children in a room with their 3rd sister? “no we can’t help unless you are diagnosed with epilepsy then yes please do get in touch” – really whats the point? now all of a sudden theres a risk I may need help with my children and your willing to help us? no thanks we will manage like we always do.

Its hurtful and painful to be judged at every angle to be made to fit the same tick boxes as thousands of other parents and children who need support. We don’t all fit the same bloody box, we are all individual and its about time that someone in 2018 makes a change, is it any wonder that the mental well being of our children and their parents is taking a dive? I fully admit I am exhausted, I have looked after my disabled children for nearly 12 years with no support and I will be doing so for the rest of my life with at least one of them who will I suspect always need support.

My caring duties have been to learn how to clean and maintain hearing aids ( people go to university to learn this), attend countless appointments, meet with doctors and teachers, deal with behaviours that challenge, memory issues, and more besides. You ask for help and assessments but are told that because she has ADD they won’t assess her as “it won’t make any different” well of course it would, it would help us get the right support that we need to help us at home and in school. All this is going on and then another daughter is having the same issues and breaking my heart every day because she has no friends and no one understands her, she struggles educationally and emotionally, tells me she is rubbish and thats before they all have to stand and watch mummy having absence seizures. Can we get support for them? nope, not until its to late and I end up being diagnosed, then again what if its just stress (hoping it is) how am I going to make lifestyle changes to help reduce stress? Nothing is going to change, no one will help us……

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I really do feel like that abyss is getting ever closer and being housebound for the last couple of months yes I think I am going a little crazy, even without the car I still have to ensure theres food, the girls and husband have what they need, medication is ordered, appointments made, checked and kept, schools updated, work and try to live while feeling like I am sinking a little more each day. Everyone says they understand but they don’t really, professionals like to think they do as they have had to go to university to learn what its like for us. They don’t have to live day in day out with disabled children and guess what most of us parents who have done those parenting courses and have life experience and if like me you do the college courses then actually are we not better placed and more qualified than someone who sees it from the outside?

My friends are brilliant and are always there to support me as much as they can as are my family who are amazing, but I always feel like I am putting on them. My sisters have their own families and lives to live, my husband is amazing and really trying to be supportive but I still feel like crap. He now has to work full time and do the running around and I worry if we are strong enough to overcome yet another obstacle. Can our marriage survive another hit? we spilt up once when it got tough and there was no way out, its statistically more likely that families like ours break up, its even expected…..

Why is it so hard?

xx Leanne xx

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

It’s a Snow Day for Anxiety…..Yippee

How wonderful…… its an unplanned day off school yippee

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Or not as the case may be for parents who like me are not only struggling with outburst’s, bad moods and just the usual stress of having having children at home with a disruption to their routine but also a child who has Anxiety.  My daughter can have feeling’s of:

  • restless
  • on edge,
  • irritable,
  • feeling sick,
  • mood swings,
  • tummy ache
  • headaches

These symptoms can affect my daughter in addition to her ADHD.  L get’s worried about going to school or in the case of a snow day not going to school. Anxiety can affect a persons relationships with those around them and this affects our family quite badly as L’s anxiety then rubs of on her sister’s and causes tension and strife.

Having children who do not do well to a change in routine can be so bloody stressful, everything has to be planned and written down and two of my girls just can not cope if something changes. Its not like I can even fully prepare them for a snow day, the weather forecast is never foolproof and more often than not forecasted snow misses us, But not today…..

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So yes the news has been forecasting the weather, talking about the “The Beast from the East” for the past few days at least, the kids have been asking Alexa when the snow will arrive and while there is definitely an element of excitement at having proper snow there is also the constant questions ‘what if we can’t get out mum?’ ‘when will we go back to school?’ ‘how long will the snow be here?’  For most this wouldn’t cause upset but having a child that feels anxiety no matter how much I try to prepare them just makes a snow day a headache day for me. So much so I just want to go and hide under the cover’s and shut the curtains and pretend there is nothing going on.

You may judge me for it, call me a Scrooge, a misery but yes when its a school week I would much rather that my children were in school and not just because it’s easier, less stressful but because its routine. They know what they are doing, when they are doing it and how their day will pan out. Having unplanned days off especially in the middle of the week can be upsetting and confusing for them. They want to be in school with friends but they also want to be at home playing in the snow. They can become worried about family and friends who are out driving in the snow, They become over worried about pet’s. Eventually as the day draws on they become irritable and angry with themselves and others in the house. Having 4 children with different needs is interesting to say the least when confined to the house (which is a little on the small side).

So there was me this morning becoming emotional at my husband as he was getting ready to attempt the drive into work while I was on the bloody website this morning from 6am constantly checking the school closures hitting the refresh button while constantly being asked “am I gong to school?”. I can honestly say I was hoping that our’s  would open, alas it wasn’t to be and at 7 am this morning the girls were hooting and hollering because they were having a day off while I pulled the duvet up and cried.

The funny thing is that we soon slip into a sort of weekend routine where by the kids have breakfast, get dressed, scream at each other, then make up before getting ready to be out of the house at 8.30am in the snow. For me on a snow day I get 30 minutes of fun running around in the snow before I am left with the bedlam of great drafts of wind whistling through the house due to open door’s, wet clothing and puddles in the house, clothing changes every 20 minutes due to be wet and cold and thats before they then come back in again and are bored, yelling at each other and me.

I love the snow, I love as a grown up being able to watch the snowflakes and as a mum listening to the shrieks of laughter from my girls. What I hate is the extra challenges that our family faces even in the face of just having fun.

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Fun before the Bedlam (LeanneBrown)

 

Have fun in the snow, stay safe, stay sane

xx Leanne xx

Sometimes I cry…Raising Disabled Children

I haven’t written in a while, life has just seemed to overtake me one week blending into the next. I keep going from one day to the next in the same routine as though I was stuck in a ground hog day. Do you ever get fed up of doing the same thing day in day out? Be Honest…..I do it drives me wild to know that when I open my eyes the day will start the same as every other and that by trying to change anything I just make life more stressful for myself. It can at times seem like we are living with a Dictator. Having 4 girls anyway the hormone levels in this house can be through the roof, factor in one who has ADHD, memory problems and other issues and I am surprised the husband hasn’t moved into the shed.

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Now I know what some of you may be thinking, Am I just whinging? Am I being silly? Am I weak? A bad mother? The answer is no…..Anyone raising a child with any form of disability knows that you have to adapt, you have to work around their quirk’s, their behaviour and in most cases you really do have to just make the best of any situation you can. Its really hard to do this and still feel that you are being a good parent. I worry every day the effect that one Childs disabilities is having on her siblings. I also worry that my other daughters perceive their sister as the favourite, the one who gets all the attention wether its good or bad. I worry about the relationship’s my children forge, the way they are at school, I get angry at the stupid things they argue about and at the end of the day I cry. I cry for the things one daughter has lost, I cry about the disabilities, I cry from the stress, I cry and there is no shame in that at all.

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Having 4 children is hard, I am judged for having four children and at times I feel its my fault they are who they are, but is it?  I also feel really anxious when my youngest acts out. I feel certain that its learnt behaviour being 4 years younger than her sister she has grown up watching that one can be naughty and still get attention, but it scares me what if she also has ADHD?

So how do you split yourself and be in effect two different parents at the same time?

Truth is 14 years later I still have not found the answer. I struggle day in and day out with how to best be a parent. The way I parent is constantly evolving and changing to adapt with the needs of my children but it is also constantly being observed by those on the outside. Not all disabilities can be seen as is the case with my daughter’s. They do not sound any different, look any different and at times do not act any differently to other children. It isn’t until you look closer that you start to notice the subtle differences, the hearing aids, the slight lisp to words, the forgetfulness of one, the behaviour at certain times of day when medication has worn of, the Anxiety living life. If you passed my children in the street you wouldn’t notice anything other than 4 sister’s.

This is perhaps the hardest part of being their mum, unless you are living the life that I am you can not fully understand how exhausting it is trying to keep everything together. That smile on my face at 9am is one of relief not happiness. The frown at the end of the day is born of tiredness and also stress. That sigh is after another round of upset screaming, or a round of abused hurled my way that makes me feel like walking out. In fact I have come to realise that in trying to raise them, teach them and make sure they get every opportunity to be independent I sometimes need to take a step back, read some of my blogs and realise once again I am not wonder women, I am not a magician I am a mum and one that will adapt, fight and evolve even while feeling like I can’t do it anymore. Its not what I signed up for but do you know what, these children amaze me everyday, there tears but also laughter, theres anger but also love and even on a bad day I will always love and be in awe of my children.

xx Leanne XX

We Have to Believe in ADD Magic

Its that time of the year again, it’s December nearly the end of the year and as I sit here writing this I am starting to realise how shattered I feel. My whole year has passed in a flurry of hospital and check up appointments. living our lives from one appointment to the next is really starting to annoy me, it feels like I am losing time and year’s living a life based around my children disabilities. Do I sound selfish? Am I not better to spend my time thanking my stars that my children do not have more severe  need’s? in fact should I even be thinking and feeling this way at all, after all I decided to have children………

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Having three girls with varying needs is exhausting no matter what those additional needs and disabilities are. Any parent who has to spend most of their time worrying, stressing, upset, nervous, anxious and being on that emotional rollercoaster should be damn proud of the things that they achieve daily, even if its just managing to see friends or tidying the house. Living, working and making a life for ourselves and our children can at times feel like an empty black hole. We don’t get thank’s for what we do, I feel like at times I am my daughter’s battering ram, they can’t take out their feelings on anyone else so the but stops with me.

Christmas is a magical wonderful time of year isn’t it? No Not all the time, sometimes it’s hopeless, energy zapping, bury your head in a pillow type of magical. Christmas does not herald the end to your daily routine’s in fact it makes these harder. I have to worry about medication and if we will have enough, I booked a Christmas food shop weeks ago…. did I order everything I need or am I going to have to go out and get it with the kids in toe? They break up from school on a Tuesday….a bloody Tuesday like thats not at all confusing for a child who is so use to routine is it….there’s going to be fall out from that I can tell you, I have booked tickets for a show which I dithered about doing so I settled on spending the money and making sure we are at the back near an exit just in case we need to leave…will it be worth it with the crowd’s and the change of routine? who know’s  Christmas can feel at times like a waste of time and so disappointing for me at least the children never seem to think so which is amazing.

 I just feel so sad that my year, and my children’s year’s can be counted down by the appointments my girls attend, from Audiology to paediatrician to ADHD Nurse to even school meeting’s. They all add up and whats even worse is its never ending and I am already booked to next August with Audiology appointments. There is no getting away from the fact that our family life is a plethora of hospital appointments intertwined with birthdays and that I am getting older and more cynical as time goes by.

BUT……….There is one thing that this family has not yet outgrown and that is the magic of Christmas. My 13 and 14 year olds love the magic even though they know there is no Santa and its nice that they are now starting to take part in the xmas shopping. As for the younger two 11 and 7 years Santa still very much exists and we have been having some great fun (me and dad that is) helping those naughty elves to get up to lots of silliness. In a world that can be dominated by the symptom’s of ADHD, the lack of concentration, the memory issues, the anxiety, the inattentiveness, the daydreaming, plus the hearing loss, and other medical concern’s, the worry of appointment’s that are still to come around, this little bit of fun and laughter that we all have down to a couple of little elves may seem to the on the outside desperate and silly but to us it is a break from the norm and it is something that I can do at the end of the day and know that come the morning my children will wake excited and happy at least until the elves are found and then the drudgery of the normal day comes back full force.

Here’s a hug for all the parent’s this Christmas time where ever you may be and how ever you spend this Christmas remember you are amazing……….

For more tip’s on how I cope at Christmas see our previous Blogs x