When life gives you Lemons…… Mum Coping with a change

Its been a while since I have felt able to put pen on to paper. The last year has been one of the most difficult I have had to face in a long time. The loss of freedom, of structure and my own self worth. Having been diagnosed with Non Epileptic Attack disorder I have had to take a step back which has left me some days with a feeling of failure and morose. I feel guilt even more keenly as now not only do I have disabled children to care for I have had to step back and take time for myself.

Me

I have always been someone that takes what life throws at them and somehow tries to make the best out of it. Raising children with disabilities and special needs, a marriage break down and reconciliation, retraining in a new career to fit around my children, meeting new people, asking for help are all ways that I have tried to make the most of who I am and what I have to offer and turn it into something good.

The last year has had a major effect on that ethic. I use to think I was invincible, there was a never ending to do list in my brain. I had places to be, appointments to do, I was running the kids around, working and being a mum. Now I have to rely on other people, my children have had to learn to do some things for themselves and I feel that I am only living half a life. That sounds sad and pathetic but when you are raising children with disabilities your life isn’t your own, I felt I had purpose, I was the primary care giver and with the flip of a switch this has all changed. That said I think my girls are amazing, its been a long road of getting use to sudden changes in routine which has lead to behavioural issues, thrown into having to become more independent before they were ready but they have struggled, overcome and never ever cease to amaze me.

The Girls

Is this a bad thing?

To be honest the monotony of routines, going it alone to appointments, the never ending routines that my children had to work through each day was getting me down, I just did not want to admit it. I didn’t like to ask for help, I didn’t want to seem weak….. but in the end I had that choice taken away from me. My brain decided enough was enough and that it would start re booting when ever my emotional state got to high. The theory is that some past event has an emotional tag attached to it so when I started to get stressed out the emotion would take over and re start my brain. The daft thins was I could be hoovering, in the middle of an challenging episode with one of the girls or about to fall asleep, there is no rhyme or reason for it.

Why am I writing now?

Do not go it alone!! My best advice for any parents out there raising children with special needs and or Disabilities is do not go it alone. You never know when you are suddenly going to need someone else’s help. Yes its hard to get professional help, yes families are unique and sometimes difficult and you may not feel you need a support system, but you do. Wether its support groups on Facebook, websites, specialists, group meetings, what ever it is if its there use it. Our girls have hearing loss, ADD, anxiety, OCD and possible ASD, and there are some amazing charities out there mostly set up by parents who have been where we are and are willing to share. I have met some lovely people through groups such as the NDCS and ADHD groups and I don’t think I would have managed this last year if I didn’t have a support network in place.

As always am here to chat / share if you would like to get in touch. Next time….. ADD and not afraid of it

XX Leanne XX

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My Top Tips for Christmas

Some days I can’t believe how quickly this year has gone and with Christmas now upon us its hard to believe that soon it will be 2019.

Christmas with children can be magical, fun and hectic at the best of times factor in disabilities of hearing loss, Attention deficit disorder, sleep apnea, Reflux and Possible Autism ( now being referred for this) it can be a rollercoaster of an event which often leaves me feeling shattered and wishing for it to be over. With the girls being older I thought it would get easier but it doesn’t, they are just now able to vent and shout at me. So to remind myself and to offer some advice to other parents heres my personal do’s and don’t’s of Christmas.

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  • Do try and plan as much as possible in advance and write it down. Having a daughter with ADD, two with possible Autism and forgetfulness making sure that they know what is going on is always the best way forward. we have a white board on the fridge, plus a calendar and as my girls are now a bit older we have a shared calendar on the phones. Everyone knows what is planned and has time to adjust especially if there is something new. Calendars are also good for noting changes if you are able to in advance.
  • Don’t try not to plan anything to elaborate, save your self stress, tears and frustration. I find that my girls are more than happy to have quiet festivities with people they know and love and trust rather than attending huge events. For some it work’s but for us it’s just more stress and anxiety.
  • Do make Christmas dinner as easy as possible. I always do a help your self meal, yes it means more pots to wash but by being able to choose their own food it takes some of the stress away and reduces the chance of Christmas dinner ending up in an argument.
  • Do have a backup plan – Sometimes things do not go to plan, be it illness, weather or something else don’t beat yourself up about it. Have something easy planned ready in case. For us this is having something that they all enjoy doing be it watching a film, going for a walk. Having a back up plan while still has challenges due to the anxiety surrounding change can sometimes diffuse a potential explosive episode.
  • Register online and have the food shopping delivered or if you have to take the children make an evening out of it and go later. We all know as parents how stressful the food shop can be in December. Put yourselves in your children’s shoes and imagine the noise, the people and your own frustrations when out shopping. If I can manage it I go alone if I can’t we have tea first or choose a supermarket with a restaurant so they can sit and chill while I shop.
  • Don’t be upset or angry if your children prefer their own company and hide themselves away. This is not a failing, I use to get so annoyed that when we go to see family/ friends or family /friends come to us and the girls either stay in their rooms or have their headphones in. You know what does it matter? they are there, they are safe and it allows you time to spend with the people you want to be with Sometimes it can make for a very quiet event.
  • Do take some time for yourself, wether its a bath, going out with family / friends or just going for a walk. Our health is just as important as the health of our children.

I would like to wish you all a (fingers crossed) happy, healthy Christmas and a happy New Year. You, Me and ADHD will be back in 2019 with fresh antic’s, more tried and tested activities and more insights into life with Children.

Take Care

XX Leanne xx

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

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

You, me, Scouting and ADD

When you have a child with ADD or ADHD how often do you sit there contemplating if your child can or can’t do something as mundane as be part of a youth organisation? Answer is a lot I bet because thats what it was like for us. Having a child with ADD (ADHD without the hyperactivity) can make you feel that your child can not be exposed to the same degree of adventure as another child due to their symptoms, Forgetfulness, day dreaming, anxiety, impulsiveness, irritability. Then there’s the hearing loss so that activities such as dancing and indoor spaces with a large volume of people meant that L didn’t get the right access to instructions needed to develop her fragile confidence. We have tried many groups, clubs and outside activities but nothing ever fit well, L was sometimes left on the side lines unable to join in, unable to follow instructions or got bored and lost interest. After a while I made up excuses as to why she couldn’t attend and by using her forgetfulness symptom I was mostly able to divert her.

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Then how bad does that as a mother make me? how can I sprout that I do the best for my girls when I started to use their very symptoms against them in the fight against disappointments and heartache at not being able to participate, simply put I felt that I was protecting each of my girls. Noisy environments are not great for their listening and concentration skills, and its increasingly hard to find anywhere that can openly cater for my Childs needs and not be scared of by labels that society attaches to them.

My view on this changed though in 2015. Our eldest who has a mild hearing loss wanted to try scouting. I was a little worried about the hearing aids and if M would be able to follow the instructions but I needn’t have worried at all. M came home and loved it with the adventure and being able to have fun with friends she didn’t look back and now 3 years later has become a young leader with the Beaver scout’s.

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L Ready for a Parade

Now I may just be barking up the wrong tree but its possible that the great outcome of M’s participation was due to my husband becoming the scout leader but I don’t feel this is the case. Especially having my youngest (Hearing aid user) who has just moved from Beaver scouts to Cub scouts with no parent as a leader and having gained her Bronze award having fun, learning new skills. After doing some research into scouting at the time, there are not many organisations around that are as Diverse, inclusive and about its youth members. What started as an experimental camp with a group of boys led to the start of the scout movement we know today. Best of all its not just for boy’s!!! All four of my girls are now in scouting and so are me and Dad.Its extremely important that all leaders are aware if there are any special needs so that they are able to work to your child’s strengths. Scouting allows for this to be done naturally with a Wide range of badges and ways to earn them taking into account the individuals own needs. Needs can be catered for with the help of all Leaders in the group.  The Troop night lasts for 2 hours and L is treated as one of the troop and kept interested and stimulated with fun tasks and activities and the programme of activities is just adapted slightly for her if needed. There is a dedicated Unit in Norwich offering scouting to all those with disabilities should we ever need to consider another way of L accessing scouting but at present she hasn’t had any problems accessing group and District events due to her ADD or Hearing Loss.

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She loves it, the outdoors adventures, the campfires, the bush crafts, earning badges, being taught the theory as well as the safety behind skills, she takes a full part in all aspects of scouting. Yes I worry as she is Medicated, what happens when the medication wears off ect but she has managed incredibly well. Scouting also gives her confidence and is excellent at giving her the space and opportunity to use her knowledge and skills and to even make friends.

Finding an organisation that can offer my girls so much in terms of memories, adventures and activities and not make them feel that they are not able is great. Yes we have to risk assess, take in to account the disabilities but labels should not mean that they miss out on great adventures no matter their disability. Small changes can make a huge difference to a child with special needs or disabilities and having a youth organisation that can and will adapt is amazing.

xx Leanne xx

How can you Best Prepare for a Hospital Operation?……You, Me and ADHD

How do you prepare your child with ADHD and Hearing loss for a visit to the hospital for an operation?

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This has always been one of my biggest worries while raising my daughter’s. L who has  ADHD and Hearing loss lives daily with symptoms of memory problem’s, understanding, concentration, then there’s her limited ability for reasoning, awareness of herself and her surroundings, Anxiety, Tick’s and just plain old fear of the unknown.

She is in Freak out mode…..

Having had an operation for Grommets when she was 2 years old our daughter although no stranger to the hospital has never actually stayed in or undergone any other procedures since she was 2. So now she is worrying and her anxiety levels are through the roof. Cue major meltdown’s, tantrum’s, tear’s, shouting, irritability and unable to sleep. Basically what we go through every day just now heightened to major proportions. so we have come up with a plan.

  • To talk about the operation as much as possible – whats happening, how they will do it, how long it will take, where she will be. This has meant a lot of research on my behalf watching online medical procedures yuck!!! so I can talk her through it.
  • Reassure – trying not to get annoyed by the amount of questions being asked, the outbursts and trying not to loose my temper after repeating the same sentence about 20 times
  • Hospital pre op visit – we had this yesterday and I made sure that she had lots of chances to ask question’s , see the ward and I also wrote down everything the play specialist said so that we can go over it again at home
  • At the outset I said that she could have a new teddy who could go to hospital with her. she keeps asking for it now but with another 2 weeks until the big day I am holding off relinquishing it.
  •  Keep her mind focused on something other than the operation. Am sure the bribes will start soon about how she will go if she can have this or I’m not going unless I get this but i’ll just stand my ground as come the morning she has forgotten her demands of the previous day.
  • Keep daily life as normal as possible – no sudden changes, no surprises, everyday is planned and written down to give L some control over what is happening.

As mentioned  anxiety levels have been increasing steadily for a few months. Hospital appointments over and done its been really important to write everything down and try and explain whats happening to L as much as possible. Even so there is no fool proof plan. Anxiety for a child can be a formidable opponent affecting every aspect of their life. Our daughter struggles with anxiety on a daily basis and it can manifest itself in any situation from what to have for breakfast, to whats happening after school to how we spend our weekend’s. Everyday has to be planned and written and fingers crossed that plans don’t change.

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The mental, emotional and physical effects of anxiety can be really difficult for our daughter and its hard as a family living with someone who has this condition. Going for an operation has really ramped up these feeling’s and just today I was receiving text messages about how sick she felt and how she had a headache. At times like this I try to be supportive, but also hard in a way as I don’t want Anxiety to be a ruling factor in her life. I send her love and tell her that she is ok and once she has these she seem’s to feel a little better and the monster’s lie sleeping till sometime.

The next few week’s are going to be really difficult for all of us, especially L. Will keep you posted

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