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
To follow our story on Facebook search @Leannesihm
X Leanne X

SATS, stress and Relaxation 

The last few weeks it’s been nothing if not stressed in our house. Our daughter with ADHD is about to face her SATS along with other year 6’s next week and for us as well as I suspect many it’s been a bumpy ride. 


Having ADHD means my daughter has symptoms of inattentiveness, impulsiveness, concentration and working memory problems. While medicated during the day once home the panic of not remembering can cause outbursts of anger and frustration making my job at home all the more harder in trying to keep her calm and in harmony with the rest of the family. This along with Anxiety, hearing loss and the general feelings of stress that taking exams can cause has me counting down the hours to the end of this coming week. 

Today we have done no revision if it’s not in her memory now then the chances are it’s not going to be in there. We have tried to keep her relaxed and calm not an easy feat. Repetition, outbursts and continually checking her bag, her schedule, where she is going and what she is doing is her way of trying to control something. Control is something I think we all look for and without it we can feel displaced. My daughter tries hard to control every aspect of her life that she can. It’s how she feels and even if it’s not always easy to live with her feeling out of control is even worse. 

We all remember exams and how they make us feel. I had an exam in December and I aged 33 was petrified. Afraid of failure, not being up to scratch and generally not believing in myself. To think that my 10 year old daughter is feeling the same emotions now as I did then is heartbreaking in itself. I wish they didn’t have to sit tests at this age. Isn’t it better to let them learn and progress at their own rate instead of pushing them to learn what they need to know for an exam? 

Anyway so no revision this weekend and no I don’t feel that makes me a bad mum. School are their to teach her academics I am here to teach her life skills. I am here to teach all of my children that life Isn’t just about revision and sitting tests. It’s about looking after themselves, working to their strengths and being happy and healthy. Stress can have such powerful symptoms both physically and mentally and do we really want our 10/11 year olds to feel this. 


Today we have had fun, relaxed and used story massage to be creative and to relax. Being able to share massage with my children is an amazing thing. Being able to help relieve some of the symptoms caused by stress and anxiety through fun and stories is great. Being able to talk through how we feel and put Massage moves to our words really brings my daughters imagination alive and helps her to put into words what she may otherwise struggle to express or express through anger and tears.  Find out more at http://www.storymassage.co.uk 

Hopefully by the end of the week we will all be feeling more relaxed. 

Take care

X Leanne x

Routine….Where’s the Spontaneity in That?

Routines

Routine for us as a family is the basically the difference between a good day and a bad day.  There is no flexibility, there is no common ground, its the routine or the highway as far as I am concerned.

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Helping to cook encourages eating

Routine is such an important part of my daughter’s life, from the way she sets about her morning to how she copes with planned events, holidays and general everyday life. Without a routine my daughter can be left feeling bereft and disjointed in an already confusing and sometimes overwhelming world that she lives in. Being able to do anything in a way that helps her to stay connected to the rest of the family can mean the difference between her being happy and contented to being frustrated and generally unable to cope. Trying to balance this need for routine with three other children can at times cause strife and I am on lots of occasions accused of favouritism, but this is not the case. As children they do not see the struggle it is to try and keep everyone on an even keel. Having your life to an extent ruled by routine is difficult and frustrating but having a daughter with ADHD means she struggles with memory problems, impulsiveness, concentration and being able to adhere to a routine can mean the difference between her being able to function or having that meltdown that all parents dread.

In some form or another we all have a routine of some kind in our daily lives. From how we get ready for the day to how we move through it and how we end it. For me routine starts when I open my eyes getting my self ready and the girls all ready for the day ahead takes the same form everyday

  • wake up then wake the girls up
  • washed and dressed
  • breakfast
  • hearing aids in, hair brushed
  • coat and shoes on bags on

If I have managed to get the children all ready to go by 8.20am its a good day and means that having a routine in place has worked even if for me it feel’s like I have crammed a weeks worth of stress into 2 hours.
Never let it be said that the job of a mum or dad is easy. First thing in the morning until the children are all safely behind the school doors is the most stressful time of my day. Four children each trying to go about their own varying routines while co habituating in a small house brings that sense of cold fear when I open my eyes. There are days when I just want to bury myself under the duvet and pretend that I have no responsibilities, no reason to wake up and get going.
Having a young family is not all plain sailing even when you have great well thought, well meaning routines in place. This is never more apparent than in the school holidays. The effects of not having a routine during holiday’s is amplified because my daughter with ADHD relies so heavily on a routine and of course when there is no school day which is structured this can cause Anxiety and panic, a whole lot of shouting, fighting and stress for the children as well as me. How do I cope erm lets say on a bad day I don’t, I struggle hugely to get the motivation to carry out the same routine over and over. Its like my favourite old saying of “ground hog day” over and over. Everyday has to start and finish in the same way. It drives me crazy sometimes, wishing that for just once we could do something spontaneous.

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Not at all Happy at being took out

So basically for me routine is the difference in being a crazy, out of control frayed round the edges mum to a semi calm and collected mum who after a strong cup of coffee and 5 minutes of quiet is ready to face the day after the school run. Until the end of the day that is. I love being a mum, I thrive on their happiness, watching them grow and learn and if I have to live with routines then so be it.

XX Leanne XX

ADHD super Power….Hyper Focus

Sitting here listening to the steady beat of the raindrops outside I am transported to a place of quiet and relaxation and harmony. Hang on a minute its the half term holidays!!!!! whats going on even when my other three children are outside playing my daughter with ADD is always about hanging on my every word, movement, talking non stop, being bored wether she is medicated or not as she does not cope well with the change in routine that is the school holidays.

 Panic stations creep in maybe she has gone outside without me knowing or maybe she is downstairs with the scissors for art and omg I left her unsupervised ARGH

Heart in mouth I literally leg it downstairs and then stop dead. When will I learn….its nothing bad. You see 30 minutes ago I came upstairs while she was starting another one of her art projects. Art is her passion she loves to draw and make and show. Biased mummy that I am I even have some of her pictures on the wall framed. So amongst the turbulent feelings that split second of realisation has caused I realise I left my daughter to do arts and crafts and as far as I know she is still there. Of course this does not stop the panic… having a child who is impulsive means hardly a minute goes by without me worrying what she is going to do next and even though she is nearly 11 that has not changed, factor in the memory, concentration and emotional factors of ADHD/ADD its hard to grasp this alien concept that means she can stay focussed and in one place for more than 5 minutes.

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Art is definitely a Focus….

Whats this I hear you say….shes’s sitting still, concentrating, focused on one thing instead a myriad of different tasks in a matter of minutes. Maybe the ADD / ADHD is not there? Maybe its a misdiagnosis well no its actually something that is real and quite amazing and known by some as an ADHD super power…. Its called Hyperfocus…

What is Hyperfocus?

A short definition from http://www.healthline.com is

“Hyper focus is the experience of deep and intense concentration in some people with ADHD. ADHD is not necessarily a deficit of attention, but rather a problem with regulating one’s attention span to desired tasks. So, while mundane tasks may be difficult to focus on, others may be completely absorbing”

I can see why this symptom of ADHD could be misinterpreted. Heck I didnt even know it existed until I started a course in ADHD awareness. I was never told by the ADHD nurse about Hyper focus. I spent moments grappling with my decision to medicate and attend appointment’s when this symptom popped up, was I wrong was she in fact fine and not have a neurodevelopment disorder??  I thought she was just being stubborn. Talk about learning something new everyday and giving your self a heart attack. There is no way I would have put Hyper focus as part of the ADHD.

What does Hyper focus mean for my daughter and us?

Firstly hyper focus affects us all. This peculiar symptom of ADHD can cause arguments and stress within the family. My daughter is so focussed on the task at hand that sometimes its a real struggle to get her to move onto something else. In the case of art work this is fine I don’t mind her doing art for as long as she likes as she is expressing herself and learning from the environment but its when the hyper focus gets stuck on things like the maths games on the laptop. Again you would not necessarily think that would be an issue but when she is so focussed on finishing first one level then the next and so on and so on it is very difficult to try and get her to relinquish the laptop so that she can do reading which is just as important for her to do as it builds her knowledge of language and aides her language skills. Plus she becomes completely shut of from the world around her and as the definition says very absorbed, yes she is quiet but she also can’t answer questions and can become angry and frustrated if the laptop is taken away as it is every evening at least an hour if not more before bed.

Hyper focus can be viewed by some as an amazing ability and it is when its in the right context and its something that empowers my daughter. The amazing confidence and love that she has for the art that she does is an amazing thing. There are times that I love to sit and watch the magic take hold of her. Watching a picture emerge and seeing the focus and dedication she gives the project to make it the best she can is amazing. But for those of us around a child or adult who has it its also frustrating, annoying, upsetting, it winds up siblings, it quite frankly winds me up sometimes. Nasty arguments that can start as a result of someone trying to join in with my daughter are not for the faint hearted. Its almost like she is startled out of a trance and that invokes all sorts of feelings to bubble up due to the interruption, her concentration is broken and it can feel like hell on earth.

So Super power or not?

I think that it is a super power if it can be directed in a positive way but as with everything there will be days when the super power strikes and its the villain not the hero who has come out to play and to be honest i am not sure how I really feel about that…..

take care

x leanne x

 

 

ADD Our way…..Holistic Therapies can They Help?

When it comes to therapies in my mind the best ones are the Holistic ones. In situations where your child’s disability is not deemed significant enough for therapies through the health care system or if alternative treatment options are not offered or available Holistic massage is an avenue I would recommend. Massage is a fabulous therapy suitable for nearly all. Massage therapies are about healing the body and the mind using positive touch to receive tension and relax allowing the body to heal itself.

They have not only helped my children in ways explained below but they have also given me a purpose, something to concentrate on and a way to contribute to other parents and children living with disabilities.

As a parent trying to do the best for my children is always at the top of my list. I am their protector, their teacher as well as their mother. For me having disabled children has had a profound effect on who I have grown to become. Before the disabilities I worked full time, I then had children and went back to work part time. Work fitted around children until it came to the point where work no longer fitted around the myriad of hospital appointments. After finding Holistic therapies I decided to train in Holistic Massage with the main purpose being to aide mine and other children and their families .

As a parent I had never really considered the benefits of massage before, I used to have reflexology on my feet whilst pregnant but that was as far as my knowledge went although I was always intrigued as to how a therapist could tell I had a bad back from my feet and I always found it relaxing and felt better in myself afterwards. Massage has long been documented as having a profound positive effect on the mind and body as far back as 3000 years especially in the East.

Leanne Brown

So when I felt lost in a world of confusion and loneliness I began researching how best to help my child diagnosed with ADD while trying to understand what the diagnosis meant for my daughter. One answer that kept coming back was Holistic therapies and how the benefits of massage could really help with some of the symptoms. As a parent and a Therapist I have found the main benefits of Holistic and Indian head massage for a child with ADD are:

  • calming, aides deeper relaxed breathing
  • relaxes stiff, tired, tense muscles
  • aides concentration
  • aides sleep
  • aides circulation

There are lots more benefits for massage but for a child with ADD these are the most important benefits that they can receive from Holistic massage. My daughter has had regular holistic massage now for two years and while it is by no means a cure it has helped her considerably in times where nothing else has worked. Massage relaxes and calm’s which when you are on the go all the time and your mind struggles to switch off can be a god send. By relaxing and being able to settle her mind my daughter finds that her concentration unmedicated can improve as well as her overall wellbeing. I have found that my daughter can hold a lot of tension in her shoulders which leads to back and neck pain and headaches. Since having regular massage these symptoms have almost disappeared. Don’t get me wrong there are some days where massage just does not work or it can take an hour just to get her to sit still long enough but once she does the benefits far outweigh the negatives. My daughter is never forced to have a massage it is her choice and one that even as a parent I ask her permission. As a therapist I am client led which means I follow their lead.

 Massage should never been seen as something to be forced into but as a choice that the child can make for themselves. This chance to make a choice themselves empowers them and can lead to increased confidence. 


Another great therapy that we have found works well is Story Massage. This is where we put 10 easy and simple massage moves to her favourite songs and stories and the effects are positively fab!!! This type of Massage therapy is one the whole family can get involved with and can have a positive effect on family relationships especially the relationship between siblings which can be charged and strained at best. It gets the whole family having fun while using positive touch to bond. Something which can be difficult in todays society. Story massage also gives my daughter a voice, a way to channel her feelings and it enables her to tell me stories she has made up or how she is feeling as she is talking while giving me a massage……yes mums can have a story massage too!!!!

Find out more about our journey at http://www.leannesihm.wordpress.com

x Leanne x

 

A mothers Decision…..ADD

Life can sometimes get in the way of writing or having the time to have 5 minutes in which to think and just breathe. 

I have spent the last couple of weeks as a mother of a child with an ADD diagnosis second guessing my role as a mum and the decisions that we have made as a family to help her since she was diagnosed. It hard thinking that 

  • you may have made a mistake
  •  maybe she’s not got anything wrong
  •  maybe she’s not that different 
  • Was she misdiagnosed 

When our daughter was diagnosed aged 7 it was a shock. It’s not something that we were expecting. What could be the source of our daughters symptoms was never really discussed and so I never looked into it. She had the sensorineural hearing loss and was seeing a consultant because of the hearing and for a long time we were told it was to do with the hearing. 

ADD came as a completely alien and unknown word but I trusted in the system and as a result aged 7 our daughter was diagnosed and put on medication. I remember going for a drink in the hospital cafe after and looking at my husband but not hearing what he was saying.

 At that moment I remember I felt like the biggest failure …..


As with certain medications our daughters eating habits have been drastically altered. Bottom line she won’t or can’t eat enough. So while waiting for a paediatric appointment we have taken the decision to not medicate at weekends. As the drugs she has leaves her system after 7 hours we felt that she would benefit from time out to help with her weight and food. Oh my god she does not stop eating she grazes all day on a Saturday and Sunday. She won’t eat large meals as she gets anxious about it but she will snack from when she wakes up at 4am until bedtime at 8pm. 

It makes you realise just how much of an effect the medication has though. I have found it tough and that she is a lot like Jekyll and Hyde. Without medication

  • She’s touchy feely to the point of annoying and it’s very inappropriate 
  • she can’t control her impulses and will do things out of the ordinary,picking up knives, throwing things, attacking her sisters and me, running outside
  • she walks around swearing, screaming  
  • she can’t sit still long enough for a story, watch a film or play
  • she’s even worse coping with change, authority and general family life. 

But she eats!!!!

It’s hell…..my other children are not like this at all. Maybe she is just making it up but the wild look in her eyes can be scary. It’s like she does not see me or hear me. She looks right through me with her eyes rolled up into her head and the noise levels….I have never heard a child get so high pitched. Her behaviour can be so irrational that Unmedicated we stay in the house. Unpredictability coupled with bad behaviour and the hearing loss would mean the chances are higher than normal that something bad would happen and so I feel for my sanity it’s safer to stay at home but at least she is eating!!!

But I feel so run down and emotional it’s all I can do some days to get up. Having no respite at the weekends really does a number on my mood for the rest of the week. Am I a bad mum for eagerly wanting my daughter at school Monday morning? Is it some kind of failing in my part,  I should be able to look after her, protect her, care for her? Shouldn’t I? I can’t afford good and bad days I have to keep it together…..People who see me must think I am just a moody mum especially at school pick up at the end of the day but it’s that knowing that the shouting, screaming will all start again once she is home and that I will be counting down the hours, minutes until she can go to bed and that’s not a routine or a state of mind that any parent should be subjected to. We should enjoy the time we spend with our children shouldn’t we? 


All that said and done as I climb out of the black hole I have sunk into the last few weeks I have to tell myself I am not super women, I do the best I can with help from friends and family. 

 

The days were my daughter snuggles up and tells me she loves me are the moments that I cherish and hang on to. 

Please feel free to get in touch 

Take care 

x Leanne x

Christmas Magic… ADD Mayhem

So Christmas is coming…..we started elf on the shelf mid November and been counting down since 98 sleeps till Santa. I feel all Santa’ed out already and we are only on the 1st December. How do I have a child who lives with short term memory problems but can remember every day that santa is coming soon? If I believed in magic I would say it’s magical but it is more down to obsession than it is fairy magic.

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Christmas Magic

What I do love about this time of the year is the enthusiasm and the magic that Christmas still holds for my daughter who has ADD (Attention Deficit Disorder) . She is 10 and still a firm believer that the elf comes alive at night and that santa brings her presents Christmas Eve. We have written and sent our Royal Mail letter to santa and she is eagerly awaiting a reply which in itself causes problems as she gets upset that the letter hasn’t arrived yet and very day I we wait I wonder if it was worth telling her and sending the letter.

In a society where most children grow up very fast I love that she is still able to hang onto a little childhood magic even if it does drive me mad. So top tips for managing a super excited ADD child 😊

  • Try not to curb their enthusiasm yes it’s only December 1st but if Christmas is something they are excited about I have discovered that it’s also a big motivator. Early elfs on the shelf truly can be magical especially if the elf does something naughty which the child relates to and it can even for a second make them realise a particular thing was naughty for example our daughter wrote on the wall so the elf wrote on her drawers in flour. She immediately told the elf off and so I explained that this situation was similar to what she had done. It’s baby steps to helping understanding.
  • Countdowns are great. Most phones can now down load sleeps to santa apps and these are great for ADD/ADHD for giving them a visual countdown. My daughter checks it several times a day but is comforted by the visual countdown.
  • Advent calendars we don’t tend to have. Tried them a few times and they got eaten in one day. This year I have decided to buy them one and use it as a reward but we shall see if it works otherwise it may be a case of mummy gets to eat lots of chocolate.
  • School holidays for us the kids break up on the 16th December this leaves a whole week of disturbed routine which will have an effect on how my daughter thinks and feels. This is when….”is it Christmas? when is santa coming?” Will start. I plan to have lots of activities and making days with them this week leading up to Xmas day. Yellow moon have lots of amazing craft sets that are very reasonably priced. This won’t solve the issue but will hopefully keep the kids entertained long enough for daddy to get home from work 😂
  • Wrap up warm and go for walks when the sun shines. Break up the monotony of a boring routineless day by getting out for even just a 10 minute walk. Remember when in school they have 15 minute break times. Try to emulate the structure of school as much as possible as this may help with the anxiety of them being at home and in close quarters with siblings.

Don’t get me wrong this holiday like any other will have me likely tearing out my hair with sibling arguements, behaviour issues, frustration and just down right anger but as always and as a mum I will do my best to keep the peace and try and ensure that everyone has a great Christmas. By the end of it I will need some serious pampering and so really need to get my massage treatment booked in ASAP 💆.

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You see there is no day off when you raise disabled children. The problems that are there don’t disappear on Christmas Eve. You still have to be a mum and dad and teach your children and comfort them and care for them. Supporting them in school, trying to get the right care for them, doing your best as a parents. If I was Scrooge I would say that Christmas just adds to the stress, anxiety and frustration especially for us parents. I haven’t even started wrapping presents yet and I have usually finished them by November. I have just been so caught up in my children’s needs and care, work and family that I just don’t have anymore to give at the minute. This makes me look like a miserable cow, someone that lets people down last minute but I just feel so weary and like I am holding my head just above the water. These are the dark days that I talk about in previous blogs. These are the days where I need my arse kicked by someone like my husband or sister. These are the days that are alright to feel, they are not wrong, they are not taboo but neither are they novel. It stinks to feel so crappy one minute and ok the next. But it does not make you a failure, it makes you stronger and it makes you a better parent.

Take care

X Leanne x