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

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

ADHD super Power….Hyper Focus

Sitting here listening to the steady beat of the raindrops outside I am transported to a place of quiet and relaxation and harmony. Hang on a minute its the half term holidays!!!!! whats going on even when my other three children are outside playing my daughter with ADD is always about hanging on my every word, movement, talking non stop, being bored wether she is medicated or not as she does not cope well with the change in routine that is the school holidays.

 Panic stations creep in maybe she has gone outside without me knowing or maybe she is downstairs with the scissors for art and omg I left her unsupervised ARGH

Heart in mouth I literally leg it downstairs and then stop dead. When will I learn….its nothing bad. You see 30 minutes ago I came upstairs while she was starting another one of her art projects. Art is her passion she loves to draw and make and show. Biased mummy that I am I even have some of her pictures on the wall framed. So amongst the turbulent feelings that split second of realisation has caused I realise I left my daughter to do arts and crafts and as far as I know she is still there. Of course this does not stop the panic… having a child who is impulsive means hardly a minute goes by without me worrying what she is going to do next and even though she is nearly 11 that has not changed, factor in the memory, concentration and emotional factors of ADHD/ADD its hard to grasp this alien concept that means she can stay focussed and in one place for more than 5 minutes.

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Art is definitely a Focus….

Whats this I hear you say….shes’s sitting still, concentrating, focused on one thing instead a myriad of different tasks in a matter of minutes. Maybe the ADD / ADHD is not there? Maybe its a misdiagnosis well no its actually something that is real and quite amazing and known by some as an ADHD super power…. Its called Hyperfocus…

What is Hyperfocus?

A short definition from http://www.healthline.com is

“Hyper focus is the experience of deep and intense concentration in some people with ADHD. ADHD is not necessarily a deficit of attention, but rather a problem with regulating one’s attention span to desired tasks. So, while mundane tasks may be difficult to focus on, others may be completely absorbing”

I can see why this symptom of ADHD could be misinterpreted. Heck I didnt even know it existed until I started a course in ADHD awareness. I was never told by the ADHD nurse about Hyper focus. I spent moments grappling with my decision to medicate and attend appointment’s when this symptom popped up, was I wrong was she in fact fine and not have a neurodevelopment disorder??  I thought she was just being stubborn. Talk about learning something new everyday and giving your self a heart attack. There is no way I would have put Hyper focus as part of the ADHD.

What does Hyper focus mean for my daughter and us?

Firstly hyper focus affects us all. This peculiar symptom of ADHD can cause arguments and stress within the family. My daughter is so focussed on the task at hand that sometimes its a real struggle to get her to move onto something else. In the case of art work this is fine I don’t mind her doing art for as long as she likes as she is expressing herself and learning from the environment but its when the hyper focus gets stuck on things like the maths games on the laptop. Again you would not necessarily think that would be an issue but when she is so focussed on finishing first one level then the next and so on and so on it is very difficult to try and get her to relinquish the laptop so that she can do reading which is just as important for her to do as it builds her knowledge of language and aides her language skills. Plus she becomes completely shut of from the world around her and as the definition says very absorbed, yes she is quiet but she also can’t answer questions and can become angry and frustrated if the laptop is taken away as it is every evening at least an hour if not more before bed.

Hyper focus can be viewed by some as an amazing ability and it is when its in the right context and its something that empowers my daughter. The amazing confidence and love that she has for the art that she does is an amazing thing. There are times that I love to sit and watch the magic take hold of her. Watching a picture emerge and seeing the focus and dedication she gives the project to make it the best she can is amazing. But for those of us around a child or adult who has it its also frustrating, annoying, upsetting, it winds up siblings, it quite frankly winds me up sometimes. Nasty arguments that can start as a result of someone trying to join in with my daughter are not for the faint hearted. Its almost like she is startled out of a trance and that invokes all sorts of feelings to bubble up due to the interruption, her concentration is broken and it can feel like hell on earth.

So Super power or not?

I think that it is a super power if it can be directed in a positive way but as with everything there will be days when the super power strikes and its the villain not the hero who has come out to play and to be honest i am not sure how I really feel about that…..

take care

x leanne x

 

 

Christmas Magic… ADD Mayhem

So Christmas is coming…..we started elf on the shelf mid November and been counting down since 98 sleeps till Santa. I feel all Santa’ed out already and we are only on the 1st December. How do I have a child who lives with short term memory problems but can remember every day that santa is coming soon? If I believed in magic I would say it’s magical but it is more down to obsession than it is fairy magic.

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Christmas Magic

What I do love about this time of the year is the enthusiasm and the magic that Christmas still holds for my daughter who has ADD (Attention Deficit Disorder) . She is 10 and still a firm believer that the elf comes alive at night and that santa brings her presents Christmas Eve. We have written and sent our Royal Mail letter to santa and she is eagerly awaiting a reply which in itself causes problems as she gets upset that the letter hasn’t arrived yet and very day I we wait I wonder if it was worth telling her and sending the letter.

In a society where most children grow up very fast I love that she is still able to hang onto a little childhood magic even if it does drive me mad. So top tips for managing a super excited ADD child 😊

  • Try not to curb their enthusiasm yes it’s only December 1st but if Christmas is something they are excited about I have discovered that it’s also a big motivator. Early elfs on the shelf truly can be magical especially if the elf does something naughty which the child relates to and it can even for a second make them realise a particular thing was naughty for example our daughter wrote on the wall so the elf wrote on her drawers in flour. She immediately told the elf off and so I explained that this situation was similar to what she had done. It’s baby steps to helping understanding.
  • Countdowns are great. Most phones can now down load sleeps to santa apps and these are great for ADD/ADHD for giving them a visual countdown. My daughter checks it several times a day but is comforted by the visual countdown.
  • Advent calendars we don’t tend to have. Tried them a few times and they got eaten in one day. This year I have decided to buy them one and use it as a reward but we shall see if it works otherwise it may be a case of mummy gets to eat lots of chocolate.
  • School holidays for us the kids break up on the 16th December this leaves a whole week of disturbed routine which will have an effect on how my daughter thinks and feels. This is when….”is it Christmas? when is santa coming?” Will start. I plan to have lots of activities and making days with them this week leading up to Xmas day. Yellow moon have lots of amazing craft sets that are very reasonably priced. This won’t solve the issue but will hopefully keep the kids entertained long enough for daddy to get home from work 😂
  • Wrap up warm and go for walks when the sun shines. Break up the monotony of a boring routineless day by getting out for even just a 10 minute walk. Remember when in school they have 15 minute break times. Try to emulate the structure of school as much as possible as this may help with the anxiety of them being at home and in close quarters with siblings.

Don’t get me wrong this holiday like any other will have me likely tearing out my hair with sibling arguements, behaviour issues, frustration and just down right anger but as always and as a mum I will do my best to keep the peace and try and ensure that everyone has a great Christmas. By the end of it I will need some serious pampering and so really need to get my massage treatment booked in ASAP 💆.

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You see there is no day off when you raise disabled children. The problems that are there don’t disappear on Christmas Eve. You still have to be a mum and dad and teach your children and comfort them and care for them. Supporting them in school, trying to get the right care for them, doing your best as a parents. If I was Scrooge I would say that Christmas just adds to the stress, anxiety and frustration especially for us parents. I haven’t even started wrapping presents yet and I have usually finished them by November. I have just been so caught up in my children’s needs and care, work and family that I just don’t have anymore to give at the minute. This makes me look like a miserable cow, someone that lets people down last minute but I just feel so weary and like I am holding my head just above the water. These are the dark days that I talk about in previous blogs. These are the days where I need my arse kicked by someone like my husband or sister. These are the days that are alright to feel, they are not wrong, they are not taboo but neither are they novel. It stinks to feel so crappy one minute and ok the next. But it does not make you a failure, it makes you stronger and it makes you a better parent.

Take care

X Leanne x

Be An Angry Mother Bear

Having a child with a disability can add strain to family and friend relationships. You’ll need patience, resilience and sometimes an iron will to get you through the day. You will get angry, You will cry and some days you will feel at your wits end with comments said, looks given and you will feel some days you have no support what so ever. Support is a two way thing I have fond you have to give and receive even when raising disabled children. People can’t support you if they don’t understand what is going on.

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One thing is for certain I have learnt this the hard way. As human’s we need a support network around us, we need people around us who make us feel safe, loved and cared for and who can at times share the burden. This can be friends, family and even the professionals involved in our children care. For me personally building this support newtwork has taken years and I could only do it once I had accepted that my children are different and that their well being and happiness is more important than how I feel others perceive me. Don’t push people away like I did and don’t hide, be proud of who you are and who your children are.

From my experience raising a child with disabilities can take a toll on you, your relationships with partners and family and can also affect friendships. This is especially true for those who come up against prejudice and ignorance from those around them, harsh I know but its true. People may have a tougher time in understanding and accepting that your child has a disability.

  • They just do not understand and its this lack of understanding that in some cases can cause strife and upset.
  •  ADD and ADHD  used to be termed as a naughty child. It is now slowly getting the recognition that it is a real unseen disability but that change is not quick enough.
  • They may feel as awkward and unsure of what to do around you and your child as you do. I still feel I don’t understand what is going on inside my child’s head some days how can I expect her aunt or grandparents to?
  • I know people who don’t really understand what ADD is and it is not confined to a particular generation either. It is hard to try and explain and we are not medical professionals so my advice would be to speak from your heart. Let them see the good and the bad and make up their own choice.
  • There is so much media on ADD and ADHD with everyone having a say its sometimes difficult and confusing. I find getting people involved and not being afraid to show the harder side of parenting ADD much more effective. Let people in and their empathy will show through.

Don’t listen to the negative though, it’s your child.  Be an angry mother bear if you need too but just remember not all people think the same and that although some people are just ignorant, that there are others who genuinely just don’t understand….

For a long time I tried to cope alone!! I felt embarrassed that my children were different, I felt anger at the world and it has taken me a long time to not only accept that my children have disabilities but to also accept that I am in no way a failure and that they are each a bright burning star who will forge their own paths and be amazing.  Going through the motions of going to hospital appointments and caring for your children can at the beginning fill the void of family, friends and a support network but there is no substitute for that support.

Its hard yes and its frustrating and sometimes its down right annoying when people comment or do something you don’t expect. I get angry, I cry and I get stressed. Its natural but instead of hitting out I find myself just smiling at them and reminding them what amazing children I have.

I hope the people in my life accept me for who I am and if they don’t then tuff shit because I  am going to be the best mother to my children and to cope with what ever life throws at us regardless.

X Leanne X

ADD….so what now mum?

For parents starting out on their journey with a disability I would say:

  • Grill your paediatricians, doctors, sensory support for as much information as you can
  • Try and have a list of questions when you go to appointments in case you forget to ask something that has been bugging you. Type them in your phone or jot them down as and when you think of them. It’s hard to keep on top of them I know but it could make a difference.
  • Take each day as it comes, there will be good and bad days you have to accept this and it’s hard, really hard!!!!
  • With ADD pick your battles….this is a really hard one to do, you feel you can’t give in
  • Take some me time!!!! It’s hard but having some down time wether it’s a walk, going out or getting lost in a book we need to try and do something for ourselves and recharge our batteries. I tried for so long just to get on and be a parent but eventually realised it does not make me a bad mother to say help I need some rest and relaxation!!!
  • Don’t be afraid to ask for help….again another difficult one especially when faced with people who do not understand your child’s behaviours and needs but on the flip side if we do not give them that chance to interact and experience it themselves how are they ever going to understand

One thing I think is true of parents who raise children with special needs and disabilities is the constant effort to do what is best for your child and sometimes these decisions can upset the normal routines and daily life.

ADD has taught me so much in the last 8 years and its teaching me a lot more as the months, years go on. 

No one child is ever the same and I think that is certainly true with children who have ADD. Every child has their own quirks, breaking points, triggers. No one child has the same symptoms but an array of them making them unique. We as parents have to learn how to adapt to take care of these children. There is no training manual its a case of trial and error!!! Its always interesting and helpful to speak to other parents for support, advice and just for someone that understands what you are going through. Facebook groups are a good place to start.

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Elements of ADD will cause you frustration, heartache, anger and you may feel like you are on an emotional rollercoaster. Memory problems for me cause me the most headaches and moments of sheer annoyance and anger and tears. I struggle as I am really an organised person to understand some days why my child forgets. Other days I feel sad for the things she looses and events she doesn’t understand as she has forgotten them.  A diagnosis of anything is no picnic and is never a simple cut and dry case. Just because you can’t see a disability does not mean its not there.

 I do blame myself as a parent for the way my children are….. Its easy to isn’t it?

It’s not my fault I know, but some days when feeling low in myself it is easy to play the blame game.We parents put ourselves through so much. We tackle parenthood head on and do everything we can to make sure our babies grow and thrive. The day we parents get our children’s diagnosises can be the worst. For me being told my daughter had hearing loss at 2 and ADD at 7 were days that I don’t really remember much about. They are lost to me in a haze all I remember doing is crying and then getting on and parenting as best as I could.

At the end of the day remember we are all super Mums and super Dads. In the eyes of our children we are their superheroes no matter what the days, months and years ahead bring. For all the love in the world raising our children to be loved and accepted is in my view what it’s all about. Yes I get angry and frustrated but the milestones my children complete and the characters they are will never ever make me think for one second that I wish life had been different. Our children are who they are and we have this amazing job ❤️

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Please feel free to get in touch
Xx Leanne xx
http://www.marshamholistictherapy.co.uk