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

 

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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. 

Bedtime hygiene……

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

Sibling love, rivalry and life

The love and support of a sibling in my own life means so much to me. My sisters are always there no matter what, on good and bad days. Being the eldest of four, growing up there was no shortage of playmates and no chance for boredom. Now that we are older, there is always a shoulder to cry on, an ear to rant to and support whenever we need it. This bond has been an important part of my life and without I honestly don’t think I could have managed in the early days of having children and going through diagnosis. 

Sibling Awesomeness

Looking at my own four children it’s easy to see the amazing bond that they all share. Even with the range of disabilities they have, they are always there to love, support and annoy each other as only siblings can. Life is interesting to say the least. Each with their own individual needs they somehow come together. They are always there supporting each other when the need arises from cuts, bumps and bruises to just spending some quiet time together reading, drawing and story massaging… well, until the arguments start!

My eldest daughter, age 13, has a hearing loss which she lived with for five years before diagnosis. She is the rock of the bunch, always trying to help her sisters anyway that she can. Sometimes I feel that she takes on the motherly role too much and that she grew up too quickly but she’s always the peacemaker and will spend hours with her sisters playing games and make believe. There is no shortage of imagination in the family!

With two fellow sisters both also having a hearing loss, M is increasingly becoming my own little guru in understanding how my other two daughters may be feeling. As she says, “been there done that mummy, maybe this could help?” She tries to support them in the maintenance of their own hearing aids now that they are older, and takes great pride in being able to show her sisters the correct way to clean her aids. She also loves to cheer her sisters up by baking them cakes and letting her sisters help. This leaves me with an upside down kitchen but the result is always the same: happy, cakey children.

My second eldest daughter, age 12, is your typical teen and finds family life hard. She has no disabilities and can become frustrated with her sisters. I have been told that she has an old head on young shoulders but the truth is that she wears her heart on her sleeve and finds the noise levels and challenges of ADHD hard to navigate. But she is amazing at writing stories, poems and songs and will think nothing of writing amazing Story Massages which she then shares with her sisters. C will spend time using story massage and sharing what she has written with the whole family. C also loves to play on the trampoline with her sisters and they will literally be outside giggling like mad for hours. What she lacks in patience she more than makes up in love and the ability to cheer up people. 

Our third daughter has hearing loss and ADHD. Life is a challenge and having someone who is forgetful, inattentive and impulsive can cause a huge strain on the whole family dynamic. Not to mention the OCD which can see her rearranging her room daily and also trying to rearrange her sisters’ bedroom, but her sisters have now learnt to embrace this side of L as they have realised that they do not then need to tidy their own bedroom up! This said she is our cheeky monkey, who on a good day will spend time gardening with her younger sister, trying to help anyone who needs it. 

My youngest, aged seven, also has hearing loss. This one is the cheekiest of the bunch and she is able to bring a smile to anyone’s face even in the darkest of moments. Life viewed on the outside can seem harsh for my youngest as she has to compete with three older sisters, but she never fails to amuse. Always the prankster she can help diffuse an argument with her funny faces and voices which help to keep us smiling. She doesn’t offer much in the way of support to her sisters as yet but I’m sure as the years progress she will find her niche. 

Life with four children may seem daunting to some but to me it’s awe-inspiring. Living with these little people who overcome so much to get where they are makes me proud. Of course like most siblings there is rivalry, arguments, and full on catfights, but there’s also laughter, love and support. 

The bond that they all share is one I hope they will cherish for life. 
XX Leanne XX

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

Transitions, EHCP Ramblings…..Sloppy Life in Realtime

The last few days have been the hardest I think I have had for a long time. My brain feels like its on auto pilot, its on a non stop rollercoaster and I can’t see the end. I am screaming on the inside while trying to look normal for my children, family and friends. So sorry but here is as good as it gets my brain is fried, here are my ramblings…..

Why….

EHCP’s, Transition to high school, impending residential trip, family holiday’s, work, hospital appointment’s, general life……

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holidays planned

As a parent of children with disabilities life is never quiet or simple or normal…… there is no getting away from it watching my sister’s I envy them some days because everyday there is something else I need to remember, something else I need to do, to tell, write, ring, order, the list goes on and on. To have a bat shit crazy couple of days feeling like a legless jelly baby who hasn’t a clue what they are doing is normal right? Life gets to us all so if you see me in the street with a bright red face, unbrushed hair, no makeup and looking like I walked of the page of a 70’s catalogue its because I am trying to be a mum, carer, advocate, researcher plus everything else. I go to sleep dreaming of the printer and what its going to spew out next, I wake up to the face of my 10 year old daughter grinning at me before commencing with the first of many rude words, screams, shouts, tear’s or just plain crazy bouncing of the walls until the medication kicks in and she can calm down and concentrate on getting ready for school.

The life of any parent is filled with ups and downs….

Its no different for any parent, we all worry the same, we all do the best for our children the same way and we all have good and bad days thats what I keep telling myself.

So why do I feel like I am loosing the plot well the EHCP for example….theres so much conflicting information out there I feel inadequate in my role as a parent in best supporting my child. Anyone who knows what and EHCP I bet knows what I mean. For those of you unsure its the education, health and care plan which is for those aged 0-25 who have additional needs and is there to coordinate your child’s educational, health and social needs and it also sets out any additional support that they may need. To me its a mind field, another obstacle which I have to try and hurdle over but with amazing people behind me and with the right knowledge I will go blindly forth and try and get my daughter the support that she needs to keep progressing and being able to live as normally as she can and be able to access everything there is to offer in this world.

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Hanging around in her hammock

Then couple this with the impending transition to high school and I feel like a first timer when in fact this is my third child to go to high school. In reality I think I am unprepared mentally in the back of my mind we are not near that stage but in reality we are. This period in our lives has crept up on me so quickly that I haven’t had time to process it never mind my daughter although after a positive look around the school she hasn’t mentioned high school since. With my older two its all they talked about for months before starting year 7. Here in lies my biggest worry as I am unprepared and so is she and it also makes me realise that maybe some part of me has not fully been able to process that my daughter has special needs. Does that make me a bad parent, I don’t think so its just I have tried to stay strong and keep things together and try and make life as normal as I can for my family when in fact I am scared that if I drop a thread our whole family existence will start to unravel like it did 4 years ago.

Raising disabled children is a juggling act. There are so many balls that I am afraid to drop but I have managed to keep them all in the air so far but when there are balls added like high school, the EHCP, new appointments, referrals I am so worried that at some point I am going to drop something and as a parent thats what I have nightmares about.

So tip to myself…..look after myself, take a break, delegate, ask for help, have a massage

take care

x Leanne X

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