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

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ADD and NOT Afraid of It

So what is ADD? Well how the specialist first explained it to me back in 2013 is its “Attention, Hyperactivity Deficit Disorder without the Hyperactivity.” Great yes, because that explanation made all the difference and really gave me an insight into what expect while raising a child with this diagnosis.

So here is what happened…

Having left the hospital with that explanation, a 7 year old in tow with a supply of medication after the initial cry moment, I thought ‘What the…….’ In some ways it was good to finally get a handle on why our daughter was different to her three siblings, why she didn’t sleep, fidgeted, couldn’t concentrate, delayed learning and all that and that finally her hearing loss was not to blame, but at the same time I was 29 years old, had never heard of ADD, had no experience of ADD and I remember thinking what now? It was a long road of ups and downs and trails and errors, with questions and me constantly questioning myself. Even now, I still research and learn to better know what ADD is and how best to help my daughter be who she wants to be.

And Now……

Fast forward 6 years and I am now the mother of a 12 going on 13 year old who has a mind of her own, is not afraid of anything including her own disabilities, still struggles with understanding the world around her, still needs her mum to explain daily life events and feelings, is a total stickler for routine, has the concentration of a gnat unless its a medical drama, still can’t sleep, has more and more periods of hyper focus in relation to said medical dramas, wants to be a paramedic but worries she won’t be able to, hides all symptoms of anything in school, is still behind her peers in school but making progress and I could not be prouder.

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It has not been the easiest of roads the last 6 years. There have been times as I have previously blogged about that I have struggled and not been able to wrap my brain around the concepts of having a child with ADD. Oh and now she may also be having assessments for Autism as well…..joy but I really would not change it for a second, even to prevent my own health problems.

She really is amazing. She is kind and funny, exasperating and annoying, she has the look of an angel but is a devil at starting arguments. She does not get on very well with her siblings but if any one them are in trouble she is the first to step in. She is loyal to her best friend even though she struggles to make and keep other friendships and she never ever lets any of her disabilities or special needs get in the way of her living life.

Outside of school she is an active member of her Scout Troop earning badges and learning new skills and never misses a chance of being in the great outdoors. More recently L started with her local Army cadet force – why I hear you murmur, because they are regimented and routine and perfect for someone that needs that kind of atmosphere!!!! Her uniform is immaculate and with support she can manage to take part even with her short term memory problem. L has even started to stay for the weekend camps -something she would never ever have done before and even though her sisters go as well L has the opportunity to be a part of something that keeps her active and celebrates her achievements. What could be better?

L is not afraid of anything, will throw herself in wholeheartedly as long as there is someone there to ensure she stays safe. Thats my job, to make sure she is safe and while she is willing and able to try I will let her and support her as much as I can, I never want her to be afraid of who she is

XX Leanne XX

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

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

You, Me and ADHD

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…

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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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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