Play – What affect does this have on you as a parent?

Play – Every child develops through play from Building Bricks where they can hone those fine motor skills to the make believe play where they make sense of the world around them – I have just learnt to stop wasting money on puzzles, board games and any toys that need putting together!!!

Having children with varying disabilities has sometimes made this aspect of childhood difficult. Though three of the girls are very close in age they have never been into the same toys. My hearing daughter has always loved muscical toys and toys that she could interact with but these toys were sometimes unsuitable for my threee girls with hearing loss. These three girlies are more about the touch and the sensation of the toys and were much more into the toys that didn’t put pressure on them to listen, sit still and concentrate. Toys such as lego which we love, Teddies and Dolls, Tea sets, Kitchens item’s that they could get their hands on and were not sitting there trying to hear what it was saying. Now of course my eldest two are 14 and 13 years toys are now a thing of the past and its all about their mobile devices which I find really sad.

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For my younger two with their hearing loss, although a moderate loss I had difficulty finding interactive toys that were loud enough for them to hear properly and I became fed up with trying. I had to instead choose toys that were not only noisy but had lot’s of visual stimulation, so light’s, moving part’s and even used toy’s that moved by themselves. Books with moving parts were great or ones with puppets attached that could be used to visually stimulate and make them laugh. While this was relatively easy when they were very small, the progression of their development and their interest in particular types of toys has made this increasingly difficult to find toys that hold their attention.

Hence I became that mum that family and friends laugh about – If a toy wasn’t played with for a week it was sold and replaced with something else as it just held no interest to the girls any more.

All four of my girls have had very different interests, likes and dislikes. This meant that they are aways into different things and so hand me downs were difficult. One daughter now 12, has ADD, Hearing loss and is still very much into her dolls and teddies and pushchairs. The make believe world that she makes with them enables her to use the social skills she has been learning, allows her to explore her feelings and helps her to work through them. I very often stand outside the door and listen to the conversations she has, but also I hear the sadness sometimes when one of the dolls feels left out.

While this kind of play keeps her entertained for hours it can also make her particularly susceptible to Hyper focus. This is where she becomes very fixated and focused on the particular task at hand and it can make it difficult as a parent to refocus her, get her to come and eat or to join in with family life. There are some activities such as the older activity types like beads, making things, puzzles and board games – especially board games just do not suit our daughter, these are sometimes not even half finished before she has moved on to other things.

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So really its all about trial and error and this can make the whole experience of toys and finding play ideas expensive and frustrating for any parent. The shops are full of toys that look so inviting on the shelves, even the supermarkets have them but with prices creeping up I really don’t want to be paying so much for a toy that may not get played with so I find the best place to get toys from is….. Drum roll please!!! – Carboots and selling sites. These have become my preferred toy shopping venue. There is so much on offer, second hand out there and once cleaned the toys are as good as new.  Sometimes even the toys are brand new toys just released that someone else has paid for and their child is not interested and they have cost me a fraction of the price and can then be passed on to family, friends or charity shops to help others.

What affect does play have on you as a parent?  well sometimes it can be stressful, disheartening, annoying and you feel like throwing the towel in but other times to see the amazing interaction, or the amazing effect a particular toy has on your child is priceless.

xx leanne xx

http://www.leanneihm.wordpress.com

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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

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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Photo by Daria Shevtsova on Pexels.com

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