What an ADHD week…..SATS, Family and weekends

So before you start reading a warning, my head is feeling disjointed, please be aware may contain rambling…….

I find more often than not when I come to a Saturday I feel so tired I tend to do nothing if I can help it. It’s not that I am feeling low or depressed but after a week of being on the edge and the whole family tethering on the edge it’s nice to just kick back, watch rubbish on TV, baking and eating cake, enjoy the sunshine in the garden and just not to think about anything isn’t it?


Not possible when you have children and definitely not when those children have disabilities. You see their needs overtake everything. People looking in from the outside do not see. When your child has an unseen difficulty or disability it can be hard for them to understand what they can’t see. Yes I moan to friends and family generally because we have been caught out and they have seen how life can be, I am not ashamed of my child’s behaviour she can’t help it, but I sometimes feel powerless to help her. There is no respite, no down time and at weekends I find myself trying to snatch moments in the day where I can either slob out, breathe a few quick breathes or just try and empty my mind. Weekends are family time, time to be together with no real plans. NO!!! Really it just means Daddy is at home to help……..Going with the flow we try not have anything planned on a Saturday and Sunday which is not always easy as life steps in. 

After this week we need a weekend to just breathe and not do anything. The SATS as predicted caused stress and tension, tears and anger, frustration, sleepless nights. When you add in the build up the SATs seem to overtake everything for us from Easter onwards. Now that they are over there is a visual reduction in the amount of tension my daughter with ADHD is holding. She seems more relaxed and more able to focus on everyday tasks. Something she has been unable to do for the last week. Even just being asked to brush her teeth has caused an arguement because it’s something else I have tried to add into her already stressed out Day. The SATs have:

  • Resulted in tears and upset
  • Feelings of failure and that she is not good enough
  • Disruption of routine
  • Short frayed temper
  • Meltdowns at the end of the day
  • Bad dreams

This is on top of the regular feelings that are associated I feel at any age with taking tests and wanting to do your best. Just because my daughter has disabilities and difficulties does not mean that she didn’t want to do the best she could because that added even more pressure. She wanted to join in with the year 6’s, she wanted to do the tests, she wanted to do her best and make me proud. She makes me proud everyday, all of my children make me proud they all do their best and even my older two have had exams in high school and I am proud of their attitude and just generally a very proud mummy. I could ask that they work harder, I could ask that they concentrate better, achieve more but I feel with so much outside pressure they need the time to also just be children. I feel my job is to teach them life skills, to help them feel part of the family, to look after their health, wellbeing and happiness. School is there to teach them academics and while yes we read, I make sure their homework is done and I help them with revision I don’t want it to overtake important family time especially as I already have feelings of guilt about how my other children cope with their sibling. I worry about how me as a mum trying to deal with Hearing loss and ADHD effects the dynamics within my little family:

  • If I shout I have to shout louder if they don’t have their hearing aids in as otherwise all I get is “what?” About 110 times this just makes me a loud crazy mum
  • I feel like I am always referring arguements, and I don’t get it right and get accused of taking side which I try not to
  • I feel shattered by 9am mentally exhausted spending an hour solving disputes and arguments between the kids. Usually I have a least one storm out of the house.
  • The end of school comes and I drag my feet to school for pick up, most days I am already in a bad mood as I naturally start to anticipate the basic hell on earth if my daughter has had a bad day
  • When I feel low we eat more crap food because I can’t be bothered either that or we run out of food in the house bad bad mother


So here I sit with some old Doris day film on the tv, one daughter out on camp for the weekend, the other sat next to me while Dad helps with the younger two trying to keep them entertained while trying to cope with the effects of having no routine as it’s the weekend. Who ever said having children was easy

Take care 

X Leanne X

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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

A day out, an Uneasy mumsy Prospect ADHD -Anxiety 

As a parent you would be well versed in the art of preparing for a day out with the family or friends. What happens though and how do you prepare for a day out with a disabled child. For me by the time I get where we are going I look like a haggled miserable cow which can make me cranky so apologies in advance if ever I meet you on a day out…….

Feeding the swans, my heart was in mouth though

For me I find planning a day out really hard. Although our daughter is nearly 11 there is so much to think about

  • What time are we going, do we have hearing aids, are we dressed…I don’t know about your children but mine are typical slouch around until the last minute and then panic stations to get dressed. I usually get L motivated by having a race to see who can get dressed the quickest…I win most days 😊
  • Will she cope with where we are going…..Proberly not but perseverance is the key mum’s and dad’s!!! Keep repeating and try not to give in as if you have other children it’s not fair on them. This is hard but I use to give in all the time till my eldest said that I always changed the plans just because of L. Made me stop and think
  • How expensive is the day out? You see if I pay say £50 to get me and 4 children into an attraction how long will we manage to stay an hour, 2 hours? I tend to find free or very cheap but fun places like Redwings horse Sanctuary. 
  • What do I need to take… Soft toy, fiddle toys, baby wipes, snacks and drinks usually grace my rucksack…I gave up with having handbags as they became so heavy a good pretty rucksack to hide all the bits and bobs plus baby wipes and drinks and snacks for you as well as your children.
  • How far away is the destination…I have to factor in travel time so I can tell my daughter how long we will be, roughly how long we will stay. I try to show a map of where we are going or my daughter will now google it so she can see how far she is going. Sometimes this helps and sometimes it doesn’t but at least I have tried to keep some sanity for my own peace of mind. 

It’s time consuming and some days it’s mentally exhausting and quite often I just can not face the questions, the tears, the anxiety and the stress of leaving the house. I would love to take my girls out everyday but it’s just not that simple. I can get them up, dressed and out the door that’s not the problem, it’s the endless questions, my daughter getting anxious and frustrated that makes me feel is it really worth it. 

Our daughter with ADD and anxiety just does not cope with leaving the house. Even to see friends or people she has known since being a baby or having planned to go somewhere she knows well, this I find hard as most people don’t understand how hard it is some days and how hard it is to relax once we have arrived at our destination when all I really want to do is go home and go to bed and start again. 

I find it frustrating and upsetting as I feel my children have had a rubbish holiday due to not being able to go out as much as I would wish. You see ADD is not just a diagnosis on a piece of paper. It’s not an excuse or just another name for a naughty child. It’s bloody hard work, consuming, irritating, stressful, upsetting. It makes you feel as a parent a complete failure. It undermines family life even when you don’t want it to and the worst thing is that even as a parent there are days that you will blame yourself, your partner/husband and even your child for the emotions that you feel due to ADD. Anxiety also affects the whole family as well as being dehabilitating and scary for the individual. Anxiety has started to impact my daughter more and more the older she is getting and the more she figures the work out and understands a little more. The anxiety is because she feels out of her comfort zone, she can not cope with a change of scenery or me planning anything. As a mum I try to help by

  • Staying calm……. this is very hard to do when you have other children around. The anxiety felt by one child seems to have a wave effect and everyone feels sensitive to what is going on around
  • Try to plan….. harder said than done as life is flexible and plans are not ridged. I have started to write everything down for my daughter in a pocket diary so she can keep track of where she will be and what she is doing. If plans change though and as a busy mum I forget to alter the information then this idea works against me and I often feel I am back at square one
  • Don’t plan something for everyday……having a very busy schedule can work and going out most days can also help with hyperactivity and attention but I now feel that my daughter sometimes just needs days at home in her pj’s to play with her dolls and relax. Again this can backfire with sibling fights, boredom resulting in screamaing and stress but slowing the pace some days also gives me a chance to wind down and not have to be getting the kids ready and rushing about.
  • Don’t ask my daughter what she wants to do…..this could be construed as controversial but unless you are willing to do exactly what she has suggested you are just setting yourself up for a fall and an awful lot of stress if the activity they wish to do is not feasible. 

Sitting here now watching my daughter react to us going to the park this morning. She has known we are going for two days and up to last night it was all she could excitedly talk about but this morning the realisation has kicked in and my daughter is worried and rocking and hurting her younger sister because she is worried about who is going to be there, what time we are going, if it’s going to be wet, how long we will be, what can she take with her, anyone else have this?
It’s at times like this my heart breaks. My other children accept where we are going and can’t wait to go and have fun while L feels scared. Is it the right thing to take her out, how would I feel if I was made to go somewhere I really didn’t want to go….in honesty there is such a place and if I am told I need to go there my heart races, butterflies start up in my tummy, my palms get sweaty and my mouth feels dry. To have to feel these symptoms everyday for what you or I would deem trivial everyday life I just can’t fathom. I think my daughter is amazing to do the things she does and to have me making her do things though am I making her worse or helping her to overcome?

Days like this make it all worthwhile

Life with kids is amazing, awe inspiring, full of love, happiness, tiring, hard work, frustrating, heartbreaking, but we do our best we find what works and we do the best we can. It’s all we can do and even on bad days I hope my children know just how much I love them and how I would move heaven and earth if I needed to for them.

Happy Easter, hope you all get some rest and precious time with your children.

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

Perfect Parent, imperfect parent….Really??!!

 Is there any such thing as perfect parenting? Or is it just an outdated way of trying to make parents tick all the boxes and, when we can’t, making us parents feel like failures?For those without disabled children the list of guides, self-help books, factsheets and social media sites are endless. Round every corner there is advice for you to follow and ways to achieve that title of the perfect parent. For those of us with disabled children there is not so much out there on perfect parenting, but as a parent one thing is abundantly clear to me…. not every child is the same regardless of whether they are disabled or not and not every child is the one you will read about in baby books. Why? Because they are all as unique as each other. Having four children really makes you see this. Not one of them has developed at the same rate, according to statistics, or even experience life and their environment in the same way. 

 

I could read a range of fact sheets, views, blogs, and websites and feel that I am a failure as a parent. I can look at the parents around me and compare my parenting skills to theirs and find myself lacking when it comes to being that perfect parent. I have high spirited girls who love to interact with the world around them but because they have hearing loss they are louder, one has ADHD so her behaviour is not the same as everyone else, she stands out but that does not make me an imperfect parent!!! It makes me a parent, a human being, a person doesn’t it? 

How can there be a thing called perfect parenting? Don’t most mums and dads  think they are doing the best that they can? The media, social media, specialist’s and family members all play a huge part in making us feel like we have to conform to the image of a perfect parent when in fact we are all as unique as our children and as a parent of four girls I feel I am learning new ways to parent my children every day by trial and error not by following some guide or book on the subject. 

 The last 13 years have really been a learning curve and it’s been really hard to not compare myself to that perfect parenting idea where your children do what is considered the right thing/way to do something… treading water here as I can honestly say I have not read a parenting book since my eldest was four years old. Saying that, light hearted programmes are now being made such as the recent “Parenting for idiots” on channel 4 showing even famous faces have parenting blunders. This makes me smile but makes me wonder why we still try to live up to expectation which leads us to doubt ourselves and can in some cases lead us parents to feel like we cannot cope!

 Raising our children today is very different from when my parents raised me 30 years ago, more of us parents work, technology plays a huge part in our lives and parenting has changed with advances in knowledge. Surely it’s time to be more accepting and not put people into boxes, classifications or categories. In my opinion there shouldn’t be this pressure to be like everyone else. We shouldn’t feel pressured to conform to a set of ideals which we can be seen as failing in. None of us are failures. Religion, age, personality, traditions; we’re all unique so why can’t our parenting skills be viewed as unique? 

I feel perfect parenting is sneaking into your child’s room at the end of the day to gaze on them sleeping and feeling a huge rush of love for them no matter what has been thrown at you that day, its taking care of them, protecting them even when you have hospital visits and you don’t know what the outcome will be. It’s watching them grow and learn and being there to catch them when they fall.


 Parenting skills and Disabled children……

Having disabled children who are seen as different and challenging really impacts on how society views me. One noticeable trait of being a mum to a child with hearing loss means that I have to speak louder than other mums. This used to be really embarrassing when out with other parents at toddler groups etc., my children are louder than others and the old saying children should be seen and not heard would never fit with my girls. Then there’s ADHD which has so much stigma attached to it mostly due to the way it has been viewed in the past as a naughty child and of course that old philosophy of bad parenting.

Am I a bad parent? Does struggling to raise a unique, beautiful child struggling day to day with memory loss, impulsiveness and a range of associated ADHD comorbidities make me an imperfect parent? I do not view myself as the perfect parent but I am not a failure because of it. I try to remember that I am unique, I am not perfect but I am raising my children the best way that I can with help from friends and family and being the best mum that I can be. 
X Leanne x 

http://www.leannesihm.wordpress.com 

 

Food…Worry and ADHD

For many of us parents making sure our children have enough to eat to grow strong and healthy is a main part of being a parent. From the very first time they are breast fed or have a bottle until they are older enough and equipped with the skills to feed them selves children, eating and stress go hand in hand. 

Setting meals up as a buffet style help yourself sometimes helps

So what’s it’s like when you have a child with ADHD and they are on medication to help them but a main common side effect is loss of appetite and weight loss? What’s it like to try to coax a mini me into trying to eat while making sure they get all the vitamins and protein they need to grow while keeping anxiety and tears to a minimum? 

It’s hell on earth as am sure other parents can relate. The won’t eat, can’t eat is an apt phrase in our house. Get rid of the medication I hear you say…. but what if the medication is what gives your child a shot at a “normal ” life where they can try and fit the social norm? Bugger that I give my daughter that tablet every morning because it helps to settle her mind, it helps to curb the impulsiveness that could ultimately put her life in danger. That medication allows her to learn to communicate with us and the world around her and it gives her the gift of learning. Isn’t that what we all want for our children. 

But it’s a well documented fact when you start looking that eating habits while on any of the 5 drugs used to treat ADHD are affected. If this is the case then why is there not more support out there for parents? Why do we have to watch our children get thinner and thinner before they are given help and advice? I don’t know the answer to that question but as a parent here’s what I have learnt over the last 4 years. 

Little and often 

With most of the medications once they start to work lunchtimes are the worst affected meal of the day. They just do not feel hungry and there is no point making up huge lunches and hoping they will eat them. I have tried all her favourite foods, bad foods, pack lunches and hot dinners. If she’s not hungry she won’t eat. What is working is 

  • One portion of fruit snack 
  • Soreen lunch bars – small malt loaf bars full of yummyness (her words not mine) 
  • Small portions of things she likes like cold pizza, cold pasta with cheese and ham, yoghurts 
  • Wraps instead of sandwiches work as bread seems to clog in the mouth and puts her off

Breakfast is the best meal to get a good meal into them. We have scrambled eggs easy to make and full of protein also bacon sarnies, yoghurts and cereals. Breakfast really is the most important meal of the day. Here’s some more of what I use but it’s really hard especially when you have other children so don’t always give in at tea times and only make what your Child with ADHD will eat. Mix it up and get them to help. Also maybe make tea a little later so the medication wears of Oh and be prepared for midnight snacking!!!!! Left overs in the fridge never last long in my house.

  • Milkshakes with whole milk
  • Cheese ( if no dairy intolerance ) on anything and everything chicken and cheese with chips or mash is a favourite. 
  • Home baked goodies – I have found recently that when I bake she eats non stop banana loaf and gold digger buns from a children’s cook book are the best. She says she likes mummies food better and for some reason she will eat it. 
  • Avoid chocolate and sweets – this is hard if you have a child who loves chocolate and yes they are full of calories but they are empty ones and don’t last long. Puddings like Apple crumble and custard, jelly, chocolate raisins are a good compromise and more calories. 
  • Snack box – my daughter had one at school she can use discreetly and one in her bedroom. Full of raisins, digestive biscuits and dried fruit and nuts. 
  • My daughter won’t eat mash potato so a jacket potato works better than boiled spuds and you can put anything with it
  • If you can offer a mix of different things for tea and put in separate bowels for your family and child to choose from. I find this helps to increase confidence and she is more likely to eat more as she is given a little more choice but I control what is cooked. 

We recently saw a dietitian as my daughters weight has fallen to the 20th percentile and I am scared out of my mind as she is not growing properly. It’s only when you sit down and list everything they eat that you see how much you are doing your best. Also I realised that although my daughter wasn’t eating a lot in the day boy was she packing the calories in at night. The dietitian said this was fine and that midnight feasts are a way of the body saying it needs more calories/food and energy.


This blog may not help you at all but if it does anything I hope it shows that in your fears and worries your not alone. Something so basic as feeding your children can when on medication become a battle ground and so so stressful. There’s times when I cry and fret because food it’s such a natural thing to do to eat. But for our children that choice is less simple and harder how can you ask someone to eat if they are not hungry…..you can’t you just have to find ways to work around it while keeping stress to a minimum. Sneak snacks in when gaming, leave fruit, biscuits laying around. A snack box in their bedroom with yummy bits in you’ll be surprised by how much of a great job your actually doinh. Your a mum, a Dad and your doing great 
X leanne x