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.

img_2205

  • 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

Advertisements

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.

IMG_7630

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.

img_2152

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

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.

blue and silver stetoscope
Photo by Pixabay on Pexels.com

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……

woman holding her hair
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

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.

young-girl-ballerina-dance-591679.jpeg

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.

IMG_3269
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.

pexels-photo.jpg

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

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.

pexels-photo-723876.jpeg
wordpress

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.

pexels-photo-736843.jpeg
WordPress

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

A Little bit Of Technology….At home with ADHD / Hearing loss

I want to talk technology. Its all around us and with the generations who come into contact with any type of technology getting younger how do we as parents decided whats best for our children?

Growing up I remember when our parents bought us a saga mega drive and we played the lion king on it. Thats one of my earliest memories of technology in our home. As I got older and started high school mobile phones started to appear but it wasn’t until I was 16 that I was finally allowed one which then paved the way for my siblings to have theirs. Move on 18 years since then and internet, gaming systems, mobile phones, tablets, laptops, plus many many more are all around us.

fullsizeoutput_6b5

So when you have a child with disabilities and or learning difficulties how do you navigate this huge market to find the best devices to help your family? How do you decide when to introduce technology? How do you try and limit the impact of technology to reduce stress and anxiety.

Many parents on a daily basis rely on the technology that is now available to help them care for their children no matter their disability. For us living with hearing loss and ADHD present’s challenges when it comes to hearing outside, being able to listen to music and using technology to help reinforce learning, engaging with the world outside, schoolwork ect. That said there are so many things out there I wanted to share a few thought’s / idea’s

  • When do you give your child a mobile phone for instance? For us we decided that on starting high school this would be young enough to introduce the mobile phone. I didn’t see any reason for them to have one younger than this. We choose a mobile phone that we could link to our’s and so that we are able to control certain aspects. with a 4 year gap between the third daughter and the youngest this has caused upset but I stand by my guns. children need to learn phone etiquette and this can just add stress to an already fragile daytime routine.
  • Social Media? for Facebook the age is 13? but for me a child with special needs and or disabilities do they need the added stresses and pressure of social media? for my family no I don’t feel that they do, so for this reason my children do not have accounts, not that any of them have ever asked for one.
  • Educational games / laptops? I feel you don’t get a choice of wether you can or can’t introduce these. for a few years now I have noticed that the use of educational programmes on the internet has increased for homework and set by the schools. children are actively encouraged to use these programmes at home and do homework that is set. thats all well and good but for a child with ADHD and no concept of time and who can have trouble concentrating this can cause stress. on the other foot my youngest loves going on educational programmes that help her with spellings and maths.
  • Activity tracker’s? these are all the range at the minute and with adverts on tv showing children having fun it was only a case of time before one of my girls wanted one. we have recently bought the Garmin vivofit Jr. My youngest daughter is 8, has hearing loss and is really into visual items that she can interact with. The watch has an app which parents can use to add target’s, chores and see how active the child is. The chore part is my favourite, this is encouraging my daughter to get up and do the chores I would otherwise be shouting at her to do all by herself as she earns coin’s. you are able to set the coin level and the reward just like reward charts. you can also set reminders which is great.
  • Listening to music? For those with hearing loss / deafness the http://www.ndcs.org.uk which is a fantastic site and well worth becoming a member of no matter your Childs level of hearing loss, have a technology test drive where you can apply to borrow and test products that you would like to see and try before you consider buying. after problems with headphones in our house we were looking around and recently tested some Aftershokz bone conduction headphones, and I must say they were fabulous. having four girls three with hearing loss they were fought over quite a bit but they stood up to the pressures of an 8, 11 and 14 year old using them. Having no lead to be pulled and messed around with added to the appeal. As for the sound and ease of use once the girls had connected them to their mobile phones they found the sound quality really good and for me an added bonus was they could still hear me if I needed to speak to them. The NDCS have a range of products that you are able to try and the service is easy to use.

If anyone has any more idea’s they would like to share please do get in touch I love to share and hear what may be beneficial to my girls.

Xx Leanne Xx