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

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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

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

 

Massage and sleep

Does massage encourage sleep?

We were those parents who struggled nightly with trying to get our daughter to sleep. Facing the tantrums, the tears, the heart wrenching sobbing and the ear splitting screams. We faced the ever depresssing ebb and flow of emotions from anger to frustration to just total exhaustion. 

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As a parent I submitted to the specialists and did everything that they told me to do….religiously 

  • No computers, TV, games console, phone, or any other electronic device
  • Black out blinds
  • No night lights 
  • Same bedtime hour
  • Soothing baths, bedtime strories, classical music, snacks, drinks 
  • Medication


I went on sleep courses where I felt like a failure as the rules never seemed to apply to my daughter. It became frustrating and to be honest I stopped going as nothing was making any difference. Our daughter was stressed out and so was I. 

Next step…

Late one night while my daughter was still trying to go to sleep I was googling for help and advice. Firstly what strikes me is that a lot of the research and information available is based on studies in America. While speaking to parents over the years sleep problems are a significant issue here in Britain so why are the specialists here not better able to help us. Why are we given medication and told to get on with it? Why are we told to attend courses to teach us what we are already doing? When will doctors accept that for some children sleep is a real medical issue and not parents making up symptoms in the hopes of a quick cure to make our lives better??

While researching one sleep deprived, weary night I came across mentions of massage. This is something that I had never considered before but having come out the other side of relationship problems, feeling insecure but determined with the thought of doing something for myself appealing I booked onto an Indian Head massage course. 

My Nephew enjoying 5 minutes of massage

The course took 3 months to complete and with my daughters permission I used her as a case study. Well wow from the very first massage move my daughter was a little less tense, a little less stressed and that night along with her medication she went to bed and actually slept. Well like you I thought it was a fluke but as the course progressed and my skills became more fluent and skilled we noticed a big diffrence in bedtimes. 

Don’t get me wrong massage is not a cure, sometimes it will work but others it won’t. The biggest thing for me is that it encourages the bond between me and my daughter. It’s time that we can spend together, relaxing. Massage also helps to relax me which in turn has a positive effect on my daughter. You see if I am angry and stressed she bounces off that, once I calm down I have noticed she does too. 

How can I use massage at home….


Massage does not mean that you have to go and train. A massage could be a back rub, twirling hair at bedtime, it’s about positive touch. For those who would like a bit more structure then I recommend story massage. You can learn 10 simple massage moves that you can use with any song, story, rhyme and can be used anytime anywhere not just at bedtime. We use storey massage all the time from camping to the doctors. Massage can help reduce tension and stress, can help to calm and refocus and with the story massage you can have fun with your children creating massage stories and….

Best of all mums and dads your children can share a massage with you!!!

If you would like to find out more or just wants chat please do contact me

Xx Leanne xx

Highschool – ADHD milestone

The last couple of months have been hard work. Having a child transition to high school is daunting enough when they don’t have special needs. Having a child that does have additional needs puts a whole new perspective on the transition for me. Having been in this situation twice before I thought I was prepared for my third daughter to start high school. How wrong I was….

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My daughter 11 years ago 

With so many meetings, notes, letters, forms, questions it has taken me this long to just sit and appreciate that this is a huge milestone in my daughters life.  Having a child with hearing loss and ADHD, learning difficulties worries me no end I struggled with her being in primary school how the hell I am going to cope her being in high school!! I seemed to have spent the last 7 years in a bubble which sadly has now popped as high school is such a different ball game

  1. They are expected to be independent
  2. Remember what they need each day
  3. Organise themselves and get to lessons on time
  4. Get their own food and Eat at lunchtime
  5. Be responsible
  6. Do the work set or have the confidence to ask for help

While for most children going into year 7 may not have as many problems with some or all of these for my daughter these are all milestones she has not yet reached. This is not through a lack of trying to get her to be independent, and trying as many helping strategies as we can to enable her to function as expected by society and peers. Its just some days this holiday it has more added stress and upset on top of everything else that we as a family have to try and overcome. Six weeks is such a long time for a child to be out of school, out of routine, away from their friends and peers. I worry…..

To prepare for high school we have

  1. Chatting daily about high school, familiarising her with talk of high school, answering any questions that she has
  2. Pinning up her school timetable so that she has regular access to it to try and familiarise herself with the sorts of lessons she will have
  3. Taking lots of photocopies of the timetable, I would advise doing this for any child starting high school as they will all loose it at one point or another
  4. Keeping the school uniform out and visual – its hanging in her room with her bag, shoes, pencil case so that she gets use to them, sounds silly to some but having new items can be daunting making sure my daughter is comfy with her new stuff is just as important
  5. Next week we will start getting back into the school routine in regards to times. When school starts we will need to leave the house at 8.20am so in preparation I’ll start getting them in the routine of up, breakfasted and dressed by 8.20am

Its also important to try and not project your own insecurities about your child starting high school. I am finding it really difficult to not become anxious, worried and over protective about how she will cope. I know its my job to worry and to make sure that she has what she needs but she also needs me to be positive and reassuring. I need to let her be as independent as she can be but as a parent and a carer I also need to make sure that she has the support from us as a family as well as the school.

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This is where trying to build a good relationship with new teachers and heads of departments is key. I have spent time worrying that I may be seen as that annoying parent who email’s questions and has had numerous meetings with the senco, but for us this has allowed my daughter to familiarise herself with the school. Its during these meetings that I was put at ease and told I could continue to email if I have any worries or concerns. We all hear the terrible stories where schools don’t communicate with parents and there is no support, teachers don’t receive training in special needs, there is no money, EHCP’s are notoriously difficult to get – we have tried twice and it boils down to being in schools that meet her needs. Parents are left feeling angry, upset and disillusioned with the whole education system. I know at times I feel that way.

High school is the next step up, the next milestone and the fact that there is no playground and no parent – teacher interaction first thing in the morning and last thing at the end of the day in my opinion shouldn’t matter, as parents we should be able to get the support we need and be able to speak to those that care for our children in our place. My advice don’t keep quiet, fight for your children, like I said its not another planet its just high school and lets face it high school is difficult enough for any child.

Good luck to all those taking their first steps into high school in the next few weeks parents and children alike

x Leanne X

My Struggle with Prejudice and Stigma 

If you have read any of my previous blogs I like any other parent raising children can go through a series of emotions daily. Some are bad days where I struggle with parenthood to the point I feel my emotions are boiling over, my neck and shoulders hurt, I over eat due to stress and I generally feel crap, but other days make me realise how amazing motherhood is. 
I have four girls aged between 13 and 7 and being able to watch them forge their own paths in life is an amazing privilege. We bring these tiny people into the world and are their family, teachers and support network. When they become older these little bundles trust and rely on you for everything still and you know that you will move heaven and earth to protect them. That feeling never goes away…..even now my own children are growing I still feel that sense of protectiveness and love I felt the day they were born. Even more so sometimes, I want to protect them from society and peoples cruel words, from prejudice and judgement.

   While I never thought I would raise disabled children as many parents don’t I have never hesitated in doing all that I can to make sure they get the best and I fight daily to ensure they are raised in a world that does not see them as different and unable but sees them for the amazing people they are and days like today when they learn something new makes me proud. 

All disabilities are different and need care in different ways but we parents become their carer’s and their advocates. In a world that is slowly changing to accept that people with disabilities deserve the same rights that we do I feel my children have more chance of showing the world what they have to offer. This is why I believe in writing and sharing my experiences like other parents out there so that hopefully my children can step in to a world where disabilities are considered but not made to hold those who have them back. 
Having children who have hearing loss is hard. I am forever feeling like I need to apologise for their loudness and their bluntness. My eldest has a mild loss and wears hearing aids and recently was bullied and told to stop staring at people. Yet when she explains why it becomes easier to understand when you are an adult but not when you are a child. You see she is not intentially being rude it’s just as she uses lip reading to help understand conversations around her, she looks at people’s faces and body language. If hearing loss was more talked about I feel that people would understand better. Another daughter with moderate hearing loss faces different issues, she struggles with high frequency words and again uses lip reading and body language to make sense of the world around her. Speech is such an important part of who we are and communication is everything. Not being able to communicate can become a very distressing and upsetting prospect. Relationships can become strained as there are barriers. 
Since the new born screening programme came in hearing loss is is picked up earlier and children can be given the care they need to help them but that doesn’t help others who do not know much about hearing loss. As a parent I tell people and are open with them that my children have a hearing loss. In previous years when my confidence was low this was extremely hard and I would frequently get embarrassed if people stared at us or stared at my children’s hearing aids. After confronting one person once about staring it became apparent that he was just fascinated as he had never seen young children with hearing loss and that he had always assumed it was an elderly person disability.
 After that I became more confident at being able to explain my children’s hearing aids as humans we are very nosy, intrested but most of the time prone to staring as we are afraid to ask. My children are no different and will stare at people in wheel chairs or people who are different from them which I teach them is wrong and that if they are intrested they should go and talk to them. My eldest has done this to a poor lady in a wheelchair. She wanted to know why and after speaking to the lady she assured me she wasn’t offended but rather happy that my daughter would take the time to talk to her. Don’t get me wrong I can’t speak for every disabled person out there but I know that now my children are getting older they would much prefer someone ask than stare. It’s how they learn and share awareness isn’t it?? 

Don’t get me wrong it’s not an easy task to teach any child right from wrong but teaching your child to accept k that has been started and we live in a world where everyone is accepted regardless of their disability.

The ADD diagnosis that another of my children has is the hardest disability as a parent to cope with. I find it extremely challenging as a parent as ADD and ADHD are still viewed by some as just a naughty child and how I must be a bad parent in some way spoiling my child or that it must be because I can’t cope. Having four children is also a no no in some people’s eyes. Thing is I can cope, it hasn’t broken me yet and the worse part is that some days it is not my child that causes me pain but the thoughts and actions of others. I feel I have to explain my child’s disability when meeting anyone new so they know straight away that there is a valid condition that makes my child act out. I feel shame and worry that old prejudices come to the forefront of a strangers mind and that they think I am being silly and I just have a naughty child, a bad apple amongst the four of them. I don’t!!!!!!
Having disabled children does make you open your eyes to the plight of others. I never dreamed I would have children who had disabilities. No one in my family has anything and even the children of my siblings do not have the hearing loss or ADD that my children have. The disabilities my children face are by no means life threatening or emotional as what other parents go through, but for us it can be our own tiny world of emotional turmoil. I still feel occasionally like a failure compared to my siblings. That I must have done something wrong to be the only one with children who are viewed as different. I feel shame when my children do something that is not perceived as normal but can be explained due to their diagnosis especially my daughter with ADD…….but I never fail to feel that love, protectiveness and proudness that I felt when they were younger and free of any labels. 

Everything thing that my children accomplish makes me feel such amazing warmth and awe and that as young as they are they will continue to forge a path through whatever comes and be amazing people ready to help anyone and pass on their strength and experiences to those that are around them.

Children are not born prejudice or judgemental, they are born inquisitive , looking for knowledge and accepting. It’s this that we need to encourage
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X Leanne X