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.
As mentioned in previous blogs we use massage with our children as a relaxation, concentration, learning activity. We use massage morning, afternoon and night-times in lots of different situations and scenarios. Why? Because for us massage is a way of interacting with our children using a relaxing tool rather than shouting and getting annoyed with them which i previously did. It means less arguements, less tension and stress. It also means quiet time, creativity and respect.
We have four daughter’s ranging from 12 years through to 6 years. On a daily basis as a family unit we live with sensorineural hearing loss and ADD. We are also currently living with two preteens full of hormonal changes, moods and frustration due to thinking they are ready for the adult world.
Primarily on my older two we use Indian head massage. This is a seated massage that is beneficial at the end of the day to calm and relax as well as spending some one to one time with my children. As a therapist I get asked how this works when parents bring their children for a massage? My answer is that attending a massage therapy session can feel daunting to children. They can become more tense and even scared as they do not know what is going to happen. I always work with a parent in the same room and if possible get mum or dad to have a massage first so that the child can see what is going to happen. I always tend to talk through the massage even with my own children so they do not startle when I move from the shoulders to the neck.
Obviously with children you have to adapt some of the massage techniques to take into account their smaller bones and muscles as well as nervousness and this is something I am always conscious off. I also adapt the massage to go with the child’s body language. My daughter with ADD some days just can not tolerate being touched. If her anxiety is particularly bad then no matter how patient I am massage just will not work so we sit and talk instead. You can see when an Indian head massage does start to work as after a few sessions relaxation sets in, fidgets decrease and children comment they have enjoyed their Indian head massage. Indian head massage is a perfect pick me up after a stressful day as well as being perfect for lunch breaks. Massage can last from 15 minutes to 30 minutes meaning it can fit in with almost any lifestyle.
At this time of year exams can place a lot of stress and tension on our children as young as 10. I have also found Indian head massage to be beneficial here. Children can feel stress as much as we can and so they too can benefit from relaxation. Indian head massage can also aide sleeplessness, headaches and eye strain which are common symptoms of revising and exam taking.
Story massage is a treatment you could say ‘does exactly what it says on the tin’. It is a wonderful treatment blending 10 simple but effective massage moves with stories, nursery rhymes and songs in a variety of ways. This is a treatment that you as Parents can share with your children at any time of the day and dare I say it night. It is also a treatment you can get the whole family, carers,friends, teachers involved in and having fun.
So far we have used story massage
to explain a new situation
Long car journeys
to celebrate a special occassion
In the supermarket
Waiting for an appointment
To calm down an arguements
When waiting in a queue
Camping in the caravan
Story massage is really easy to learn and you can start enjoying it straight away. Since becoming an instructor I have personally used Story massage nearly everyday at home. My children love to write their own stories and then get mummy to put massage moves with it. It really brings out their creative side and gives the children a sense of achievement. Stories can be short and sweet or longer and there really is no right and wrong way to do it. They all sit on the stairs and tell each other stories with massage. Its perfect for a rainy day activity or when those sibling arguments are starting to get on your nerves.
I have also found story massage to be really useful with coping with symptoms of ADD and Anxiety. Personalised stories reinforced with massage can aide concentration, raise self confidence and relax especially when there is difficult behaviour. This has been especially true for us at teatime when my daughter has refused to eat. During training I along with another participate wrote a story about a magical food unicorn. We still use this story even now to encourage my daughter to eat. I have found in my own personal experience that story massage can also reduce the feelings of anxiety. When my daughter is feeling particularly stressed and upset about something story massage gives her a positive to concentrate on. For example in a previous blog I wrote about a car journey and how Story massage helped to keep her calm and focused in a small space.
I offer Story massage sessions to families here in Norfolk.
fun and informal, relaxing learning approach with plenty of tea’s and coffees
A session typically lasts 2 hours either with just parents / carers or with the children as well.
You will learn more about story massage, the founders, history
get hands on practise learning the massage moves
be able to write your own personalised story massage for your child
feel confident in sharing story massage with your own children anytime anywhere
I am now of to do a 5 minute story massage as its the first day back after a long weekend which my ADD daughter has found confusing and is now starting to feel anxious. Keep in touch as always and look out for the next edition
I have not written for a while. It’s not that I haven’t tried I have a few drafts on the go but don’t seem to beable to finish them. The last couple of weeks have been really hard. Easter holidays were a wash out. If it wasn’t the children being ill it was me. Illness for me tends to happen the same time every year 🤔 very strange but there I was laid up in bed for nearly a week having to rely on husband and family to help me look after the children and it made me think!! I need some super powers!!!
Do you find it hard asking for help?
I do strange as it may seem I don’t even like asking the husband. I tend to feel that as a mother it’s my job and I should be like some sort of super mum with special powers. Bottom line is I am no super hero. Just a normal everyday mum like you. I don’t have magic powers if I did I would take away my daughters ADD and deafness. If I had special powers my house would always be clean and tidy, the garden would look amazing, the ironing pile wouldn’t gain in height everyday. Homemade meals would be cooked everyday, my children would make it out the door with their hair brushed, hearing aids wouldn’t go missing, reading records would get filled in.
Most days I don’t even get to make my own bed or have breakfast or even get my socks on. It’s all go from the minute my ADD daughter is awake. It’s like a switch has been flipped although most mornings she is awake long before I am it’s not until we start our morning routine that things start to become stressful and making my bed is the least of my worries. The other three girls tend to be self sufficient now and other than me shouting wether we have 30 minutes until we leave it 5minutes they are able to dress and get breakfast mostly without issue. My ADD daughter is a whole different ball game. Argumentative, sneaky 😳, anxious. She can’t, won’t eat, she fights me at every turn. Plus lately her feet are falling of, she has tummy ache and can’t go to school. She can of course if I really thought she was ill she would be at the doctors but as a parent using your intuition is a staple of the day.
You have to prioritise!!
You can’t do everything, be everywhere even if you wanted to be. That goes for any parent. All we can all do is try our best, do the best for our children and make sure that they are happy. Easter Sunday we had chocolate eggs in bed as no one was feeling particularly up for anything else more energetic. Who cares am I a bad parent for letting them eat eggs for breakfast? Am I a bad influence for joining them and eating my Easter egg with them? No I am not!!!! It’s a once a year treat and after such a grotty Easter holiday that followed I am glad they at least had that much fun. If it’s a particularly stressful day is sausage and chips such a bad meal combination? No you can’t cook from scratch everyday cut yourself some slack.
For me on a school day as long as I have clothes on and my teeth are brush other stuff like my hair just had to wait until the school run is done. It’s more important for me to get the children dressed, breakfasted and to school on time. That’s another quirk of mine if I am late for anything I see it as a failing. I have to be on time for everything. Being late for school is a no no. If we are running late I feel sick and I start to feel anxious. In a way I suppose I need people to see that I am coping and that I can do my job as a mother. By being on time at least people think I am fine ☺️ even with crazy hair and no make up!!!
When it’s the holidays the whole plan goes completely out the window. There’s no routine. We try to plan outings and play dates so that we have something to work towards. I also find that I have to plan things for mornings and try and get out the house first thing. My children are so much better if I get them out first thing. This wasn’t possible while ill so I felt terrible on top because they spent the Easter holidays cooped up. Our daughter with ADD struggled the most. She couldn’t cope with staying in and not having anything to do. This caused upset and arguments. She found it hard to understand why we couldn’t go out. She called me selfish and mean because I was ill. At the time this upset me. All children have an uncanny ability to make us parents feel bad I think in their own way. We strive to make them happy, keep them healthy and sometimes it can feel like it’s not good enough. They are tough days but you manage, you find a way to cope. If we feel like we are failing it’s because we are human, parents raising the next generation disabled or not. The moral I suppose is don’t be to hard on yourself. We can’t have great days everyday, how boring would that be? Life’s ups and downs make us stronger, they test us but being a parent is the most rewarding thing ever especially when your ADD daughter says
Thank you mummy for letting me do some painting I have tidied up in there are you better now it shall I go get you a drink?
Needless to say there was paint all over but her artwork was lovely 😘
So a bone of contention in our house this week is eating. Getting my daughter who is ADD to eat is like trying to bleed blood from a stone.
Nothing I seem to be trying has been working. Breakfast, dinner and tea I may as well just put the food in the bin or better yet not even start cooking. Why does everything seem to be such a battle. I either just cook what I think she will eat and it’s wrong or I ask and then cook and still it’s wrong. I can’t win and I am the bloody adult!!! Why does eating have to pose such an issue seriously I am not soft I don’t let them dictate I cook set meals and switch it around I make it interesting while trying to not be boring and I don’t cook what I know they won’t eat. So why I think to myself will my 9 year old just not bloody eat. My other girls eat and she sees them eating, they see her not eating and being spoon fed (yes some days the only way she will eat is if I feed her ). I have tried earlier tea times, later tea times all sorts. I just feel like an utter idiot, a failure who can’t even get her own child to eat.
Well you see for Louisa she is on medication for ADD. This helps her to concentrate and control her behaviour and allows her to learn and function where she otherwise would struggle, but a MAJOR drawback is that it is suppressing her appetite. She is 9 1/2 years old and weighs around 4.5 stone by comparison my 6 year old is 5 stone. We have appointments every 6 months to check medication, weight etc and we are told don’t let it get below 4 stone.
Even though I am doing everything that I can to ensure she maintains her weight her clothes are hanging of her, she is skin and bones and her energy levels are rubbish. I have to be so careful when she has a massage so that I don’t hurt her as her bones poke out. Its heartbreaking and I hate it.I feel like I am failing her on every level. What am i suppose to do? without her tablet we go back to how it use to be where she can’t concentrate, sit still, she can’t learn, can’t socialise, picks on her sisters, throws things in anger the list goes on. Medication is meant to help my daughter but I see the effects that it has on her. Family and friends, strangers in the street can all see the effect that taking mediation has on her. So why do I do it? Why do I every morning give a tablet to my child? Can anyone else relate?
Food has defiantly been an issue for the last three years and its only getting worse the older Louisa gets. The medication used to treat ADD / ADHD is known to make them not feel hungry. It suppresses their appetites. Its why they are checked while they are on it, but what do you do between appointments. I have to weigh her weekly, its become something that I feel paranoia over. My husband is the same we are obsessed with seeing if she has put any weight on.You see I am so scared that if her weight drops to much they will intervene maybe put her in hospital but no amount of cajoling even at 5.30 pm when her medication has worn of will get her to eat. She is to tired and grumpy, argumentative and just wants to be left alone and she’s anxious about everything. She just has no interest in anything so no amount of bribes will work either. It’s getting to the point where she is starting to realise she has control over wether she eats or not. That’s something I don’t want to go through.
A new strategy…
So we have started with a new old strategy :)… a smile chart. I had tried reward charts when she was younger but they never really seem to stick and with the memory problems and learning difficulties she didn’t really understand what it was all about, she just wanted the reward. Our new smile chart is much simpler than a sticker / star chart as all you need is a pen and a piece of paper. No trying to find stickers and the stress of running out or hours spent trying to choose the right stickers because “it has to be the right one mummy”, no arguements no stress and they can personalise it anyway they want to. As long as you have a steady supply of pens your fine.
So as you can see there are two charts. One I made up for home and she can gain two smiley faces a day, one for breakfast and one for tea. The second is one that we put in her lunch box for school. This means that anyone like a friend or dinner lady or teacher can draw a face and if thats forgotten with a pack lunch I can see exactly what she has eaten and add a smiley face at the end of the day. I was paying for lunches but Louisa refused to eat them 😔
The aim is for my daughter to get as many smiley faces as she can. When she has a full 10 smiles for breakfast/tea in a 7 day period she gets a reward. The lunchtime chart is the same. Its all about making it as achievable as possible without making eating such an issue that she digs in her heels. Basically I need to make her want to eat and if a reward will do the job I can live with that.
So last week’s reward was a new pencil case she had been asking for. The lunchtime reward was an extra 15 minutes before bed on saturday and Sunday. As you can see from the chart she achieved both 🙂 The rewards can be anything that you along with your child decide getting them involved is key. Louisa needs to be excited about something so that she overcome’s her anxiousness. So we personally decided on things that louisa needed. i.e. a pencil case, a new book a little extra time before bed. Sweets and chocolate hold no appeal over a new pencil case in my house thank god! chocolate bars these days seem to be smaller anyway and more expensive or is that just me?
Last week was the first week. It was a good week Louisa was really excited and loved putting smiley faces on the charts. I thought all was going well, but we seem to have hit a stumbling block tonight. I cooked tea something I know she would eat but no she would not bloody eat it for love no money. I feel so powerless when she is like this. It breaks my heart because I know her body needs the food and frustrated because as her mother it is my job to make sure she grows up healthy strong and gets the nourishment she needs. I feel anger that she won’t eat and have to try so hard not to escalate the situation while still trying to get her to cooperate. Without the proper diet I know she could end up with health problems, she could end up with eating disorders. Lack of food means that her concentration is even worse than normal, her body is tired and has to use its own energy to sustain her hyperactivity. I feel inadequate like its my fault. As her mum its my job to make sure she eats. My other three girls all eat like horses. Anything I put in front of them they will eat, but lately I find I am doing more and more to try and cook things that Louisa will eat which means that meal times have become boring. I cook meat she won’t eat it except for chicken I can just about get away with, mash potato is a no no, peas hell no!!! bread no crusts and she won’t even touch chocolate….says its too chocolaty, crisps as long as they are the right ones, sausage rolls a must for breakfast, cooked breakfasts she will ask for then not eat once cooked. But she loves spaghetti and meatballs ☺️
All I can do is keep trying and doing my best. Hopefully after today she will get back into the swing of things and we will again have some fab results and fun looking for a new book. What ever the next few weeks bring at least I know that I have tried to do my best and at the end of the day thats all I can do. It’s all any of us can do. With ADD I am finding its all about trial and error much like with normal parenting. We all have stages with our children wether disabled or not of stubbornness and refusals to eat, go to bed ect. The key is to take it in our strides as best we can learn from it and move onto other things. My children all have a stubborn streak. It runs in the family and they are also argumentative I feel like I am butting up against a brick wall most days and even though I try to think positive I can’t help feeling somedays that my best just isn’t good enough, and when I look at my daughter I see what other people can see and blame myself even more. I will never blame her.