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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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

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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

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.

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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

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

You, Me and ADHD

 

Putting my hand up in class….no way
Going up on a stage to preform….not me
Talking to people I don’t know…is there anything worse
Feeling out of depth in new situations…yep me

 

This use to be me and I bet its a lot of other people out there too. I had the confidence of a gnat growing up and into my early adulthood, and even then I think a gnat would have slightly more. I use to be shy, hated talking to people I didn’t know, would always be the one on the edge of the group, nodding and smiling wishing I was anywhere but. Having children at first didn’t change this. Yes I went to toddler group’s but made sure I went with someone I knew. I hated going to the weigh in clinic and I never asked question’s and I just did what I was told.


To be told that your child has a disability, special need’s and needs regular check up’s, investigations and so forth didn’t really change how meeting new people made me feel. I hated every appointment in the beginning, would nod my head and give permission but it was like there was someone else inside me answering. I would get butterflies on the way to the hospital for hearing check up’s and get myself all worked up, I would sweat, feel sick and then I would break down on the way home, disappointed in myself as there were questions I wanted to ask and I was too afraid to ask them.

For me I realised that this had to change, that I had to become the carer and voice that my children needed me to be. My daughter was 2 when she was formally diagnosed with a hearing loss and 7 when she was diagnosed ADHD. A big change in my confidence, and strength levels was needed.


I started by accessing online forum’s, talking to people online started to give me the confidence to get the answer’s I needed from the people we were dealing with in our daughter’s care. Being on a forum also gave me confidence to talk to people about my experiences and also to offer advice to those just starting out on their journey with parenting a child with disabilities.

One big recommendation would be to have a note pad and pen and jot things down that the doctors and specialist’s say in case you want to research them and keep that notepad in your handbag, coat pocket so that if you think of anything you can then remember to ask at the next appointment. Its easy to forget long words and to in some cases zone out when you are given news to process, and having to wait weeks for the write up letter to come through so you can remember can sometimes put you on edge.

I had to dig down deep but I decided that I needed to put my children first instead of my own discomfort at talking to people. I became my daughter’s advocate, her voice in a world where adult’s make nearly every decision for her. My confidence does still waver from time to time but I remember that I am doing it for these four amazing girls who are all looking to me to be their role model and for the families who are diagnosed daily and are placed in the same position I was …no way am I letting them down.


If you want to know more, please do follow our blog at http://www.leannesihm.wordpress.com

 

You, Me and ADHD

So your given a diagnosis of ADHD or ADD or any other variant, your sent home with a box of medication, and told you’ll be sent an appointment for a review in 6 months……WHAT NOW???


Well first of you’ll be exhausted from managing your child’s symptoms, having regular appointment’s, assessments, trips to the hospital’s and you’ll be feeling pretty crap. You’ll also be feeling like a complete and utter failure as a parent all the while trying to keep your child from imploding, your relationship and family life on the straight and narrow and did I mention wondering what the hell you do now?

For me I went on auto pilot, I did what needed to be done at home, I tried to be there as a wife and a mother, I tried to hold down a job but I ended up letting some of the balls drop.

  • I took my children to their appointments, I cared for them, loved them no matter what but felt annoyed at times, lost my temper with them and was stressed out
  • My husband and I drifted apart, I would take all my anger and frustration out on him, we shouted and argued and he eventually went and found someone else that would give him time
  • I took myself away from family and friends while I tried to deal with the symptom’s and the ever increasing feeling of guilt about medication my daughter worried about what they would think and feel
  • I gave up work, being able to talk to other adults about grown up non Homelife topics

What I want every parent out there to know is that there is no shame in dropping a ball!!! Any parent who has children can at times feel stressed out, unhappy about their lives and the way that having children can feel like the very life is being sucked out of you. Thats normal, and its especially normal to feel that way when we have disabled children. To many parent’s do not give themselves a break, we deal with so much when caring for a disabled child no matter what the diagnosis is. Some parent’s I know go through so much more than I do and I am in such awe of them that it gives me the strength to do my best for my own children.


Living with hearing loss is annoying when you can’t hear yourself think, it gives you a sore throat shouting louder than normal so they know I am angry, its fiddly trying to replace small part’s on hearing aids and when the kids are younger I could have had a dozen heart attacks thinking they had swallowed batteries but its manageable. We learn and adapt just like our children learn to adapt to a world where one sense isn’t working like it should.

Living with ADHD is harder. Its an invisible diagnosis which to many people still see as just a naughty child or down to bad parenting. Trust me when you have had a bad day anyway and someone suggest’s your parenting skills may be whats wrong…you do not want to be near me. The grown up thing to do would be to say “ok its my parenting so why does only one child out of four have the symptoms” my childish side just wants to bop them on the noise…. and another horrible word that has been associated with my child….spoilt!! spoilt my arse, I do not spoil my children and I hate that even in todays society people still can not accept that ADHD exist’s. Hello its been documented since the 1700’s!!!

So here’s a little checklist from me to you

  • Give yourself a break, take Time to digest the diagnosis
  • talk to somebody either a professional or someone that is in the same boat as you, swap tips and advice
  • research – there are some really good websites/groups and forum’s about with people in the same place as you
  • don’t cut out family and friends – you really will learn the power of friendship and know the love of family when you have a child diagnosed, they need you as much as you need them, talk, ask for help or even just a hug

To find out more about You , Me And ADHD, follow our blog

xx Leanne XX