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

Be An Angry Mother Bear

Having a child with a disability can add strain to family and friend relationships. You’ll need patience, resilience and sometimes an iron will to get you through the day. You will get angry, You will cry and some days you will feel at your wits end with comments said, looks given and you will feel some days you have no support what so ever. Support is a two way thing I have fond you have to give and receive even when raising disabled children. People can’t support you if they don’t understand what is going on.

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families

One thing is for certain I have learnt this the hard way. As human’s we need a support network around us, we need people around us who make us feel safe, loved and cared for and who can at times share the burden. This can be friends, family and even the professionals involved in our children care. For me personally building this support newtwork has taken years and I could only do it once I had accepted that my children are different and that their well being and happiness is more important than how I feel others perceive me. Don’t push people away like I did and don’t hide, be proud of who you are and who your children are.

From my experience raising a child with disabilities can take a toll on you, your relationships with partners and family and can also affect friendships. This is especially true for those who come up against prejudice and ignorance from those around them, harsh I know but its true. People may have a tougher time in understanding and accepting that your child has a disability.

  • They just do not understand and its this lack of understanding that in some cases can cause strife and upset.
  •  ADD and ADHD  used to be termed as a naughty child. It is now slowly getting the recognition that it is a real unseen disability but that change is not quick enough.
  • They may feel as awkward and unsure of what to do around you and your child as you do. I still feel I don’t understand what is going on inside my child’s head some days how can I expect her aunt or grandparents to?
  • I know people who don’t really understand what ADD is and it is not confined to a particular generation either. It is hard to try and explain and we are not medical professionals so my advice would be to speak from your heart. Let them see the good and the bad and make up their own choice.
  • There is so much media on ADD and ADHD with everyone having a say its sometimes difficult and confusing. I find getting people involved and not being afraid to show the harder side of parenting ADD much more effective. Let people in and their empathy will show through.

Don’t listen to the negative though, it’s your child.  Be an angry mother bear if you need too but just remember not all people think the same and that although some people are just ignorant, that there are others who genuinely just don’t understand….

For a long time I tried to cope alone!! I felt embarrassed that my children were different, I felt anger at the world and it has taken me a long time to not only accept that my children have disabilities but to also accept that I am in no way a failure and that they are each a bright burning star who will forge their own paths and be amazing.  Going through the motions of going to hospital appointments and caring for your children can at the beginning fill the void of family, friends and a support network but there is no substitute for that support.

Its hard yes and its frustrating and sometimes its down right annoying when people comment or do something you don’t expect. I get angry, I cry and I get stressed. Its natural but instead of hitting out I find myself just smiling at them and reminding them what amazing children I have.

I hope the people in my life accept me for who I am and if they don’t then tuff shit because I  am going to be the best mother to my children and to cope with what ever life throws at us regardless.

X Leanne X

Its not fair….Siblings and ADD

There are some days when I feel at my worst and I don’t understand why my daughter has ADD, or why she suffers with anxiety or even why my children were born with a hearing loss so how can I expect my other children to understand?

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I have talked previously about the often turbulent and volatile relationship between siblings when one has ADD but after a week now of daily tip tapping, swearing and screaming I feel like I am at my wits end. My ADD daughter is the third of four children. All girls!! I will not say it’s an easy task raising girls but I try to do my best. What I mostly struggle with is the relationship my daughter has with her sisters. Some days I blame myself and find it hard to come to terms with the idea that my children have difficulties and other days I manage to brush myself down and get on with parenting but my other daughters find it hard to process their sisters behaviour and they can not understand why (L) is the way she is.

  • I make excuses like she can’t help it
  • I try and ignore the behaviour which mostly just fuels further arguments with my eldest daughters
  • I find myself shouting and screaming at the wrong child
  • I blame all bad behaviour on her disability when sometimes it isn’t
  • I cry and get angry which then upsets all my children

It’s on these darker days that the behaviour and symptoms of ADD become more apparent especially before the medication starts to work. For two hours before school there is arguing,shouting, screaming, objects flying and general put your hands over your ears din. Some mornings I do not even want to get out of bed. With three children trying to get ready for school and one who is being disruptive, its mayhem and can resemble a battle field…..Yes girls can fight like cats and dogs and its not a pretty sight!!!

I feel so emotionally shattered by the time my children walk into school other parents must wonder what a miserable women I am! 

The older the kids get, the harder it’s becoming to be a mum. Its harder to contain arguments, disagreements and fighting especially when two of your daughters are the same height as you…There is also no negotiating with a child who neither understands, remembers or processes what you say. My ADD daughter finds it increasingly difficult to navigate the sibling situation. She is either going of the deep end at them, annoying them or being mean to them or she gets upset because they don’t want to play with her. I can’t blame them (L) may have forgotten that book she threw at them this morning or the slap she gave them but my other three do not forget and they don’t seem to forgive either.  Some days I do all I can to limit the stress caused by them.

I have to split them up, give them different directions!!  I often feel like I am waving my arms around like an Orchestra Conductor.

The guilt sets in about how my other children are coping with having a sister with difficulties/disabilities. On the outside they seem to cope well but the signs are there like yelling at me that its not fair. Life isn’t fair its hard work as there is no rule book, guide book or instruction manual. Some top tips I have learnt along the way

  • Give all of your children at least 15 minutes in an evening by themselves either talk about their day or do some reading. I have found this makes them feel important its not easy as you may get interrupted but persevere.
  • cooking….I try to involve the older ones in cooking for everyone. It gets them out of the firing line for a while and makes them feel involved.
  • always hug and kiss your children anytime anywhere. Make sure they know even if they have been naughty that you love them
  • sleep overs / days out…for the siblings of a child with ADD/ADHD family life can be hard for them. If at all possible arrange a day out or a sleepover for them with friends or family. It will give them time out and an escape especially if its been a stressful week.
  • Find an activity that everyone can enjoy. We use Story Massage a lot in our house for almost every situation. Story massage promotes relaxation, fun, concentration and it can also calm and bring everybody together.
  • Go for a walk. I find even just going around the block can clear the air and relieve some excess energy.

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Phew now I have written it down I may go have a cry and then brush myself down do some breathing and release the Stress and tension.Even on a bad day I never hate my children or myself and neither should you. Feel free to get in touch with me

x Leanne X

http://www.leannesihm.wordpress.com

ADD; a run for the hills combination????

It was my daughters 10th birthday last week and for months in advance she had been begging to have a sleep over. Now sadly my daughter is one of those that does not get invited to many sleep overs / birthday parties. Wether its because she is not as popular at school as we are lead to believe or that parents knowing that she has “issues” just do not invite her, so baring this in mind and also in my new stance of trying to let her do as many normal things as possible (as I have let her sisters have sleep overs) and having the mind set that her disabilities should not hold her back, I eventually agreed to have a small number of friends who know her really well to stay over.

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the birthday girl

well…..

This was written at 2.45am the night of her sleepover…..

birthday sleep over and ADD; a run for the hills combination. over wrought over tired over excited every emotion going heightened and out of control when it gets to 2am and no sign of sleep what do you do

the only thing you can do so the guests can sleep is to move your ADD child and try and get them to calm and sleep back in their own bed

easy yes…. in our case its been 45 minutes and she has trashed her room screaming and swearing not a good combination especially as when she finally falls asleep she will wake up having forgotten what she has done.

I have come to the very stark realisation that even age 10 there are going to be limitations on what I can and can’t do with my daughter. For all that I want her to lead a normal life I have to accept that in some situations that is not going to happen. There is going to be times when I can’t let her have the independence she sees her sisters having. Having three so close in age (13 and 18 months between them) I really see the differences that disabilities have on my child. Its heart breaking!! I don’t want her to miss out!!!

These are the things they don’t tell us even when you get a diagnosis.

ADD is as much a learning curb as it is a disability. They tell us about the behaviours to expect, the drugs that can be used to help, parent courses to go on and so on. At the end of the day though there is no step by step guide to how to parent a child with ADD. Theres no written list of the do’s and don’ts. There is information on the symptoms and it is widely documented about all the bad disruptive parts of ADD and ADHD but alas I have yet to find a comprehensive manual or list that guides me through everyday life with my child. (will be waiting a lifetime as no two children/adults are the same)

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The girls

Very often I feel alone and alienated. Very often I feel like its all in my imagination, that surly she is not as bad as all that. I feel embarrassment… does that make me a bad mother? How hard can it be to throw your child a simple sleep over party when they are all the rage and everyone else is having them…surely her behaviour is no different to how it was when she was little except she is stronger, faster and when an object comes towards you it hurts. The screaming hasn’t gotten any louder, having sensorineural hearing loss on top has meant she has always been louder than her hearing sister. I can handle anything she throws at me…mentally and physically can’t I?

The thing is it has all changed. Disruptive behaviour at home or in the street wasn’t acceptable when she was little but up to age 6 she could be put in a pushchair or put on reins at least until she grew to big. Now when people see a tall 10 year old exhibiting behavioural problems they mutter and shake their heads. Heck I mutter and shake my head while inside I am fuming because I sometimes forget that she has this ‘illness’ and that she can’t help it but because I want her to be as normal as possible I do sometimes forget for a second that she is different, and yes as her mother I can say she is different because there is no way of getting away from it. She is unlike my other three daughters. Each different in their own way but so alarmingly different to their sister. If I was a bad parent surely they would all be like her?

So the sleepover…..

My daughters friends have sleep overs and maybe giggle the next time they are in school about how late they went to sleep but for us it was no giggle. The girls who stayed accept our daughter for who she is but even they struggled with her not being able to sleep. I felt pride at the way they tried to help her but in the end we had to remove her otherwise none of them would have slept. I had even tried to keep some of her routine at a much later bedtime and read to them plus she had her sleep medication but as mentioned, excited and anxiety played apart in making sleep disappear, we were left with running up and downstairs, shouting and screaming. I felt bad as a mother for taking her upstairs, making her sleep apart from her friends but when you are a household of 6, attached to another house sleep is very much needed by all. Needless to say the friends were asleep within 10 minutes of us removing her and didn’t wake till 9am the next morning.

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As for our daughter after she was spent from her tantrum she spent the rest of the night in our bed. She was very comfy!!! Me however spent time thinking and crying and wondering how much more we will come up against in the fight to give our daughter the chances and opportunities she deserves. Then again as parents thats what we do isn’t it? We give our children opportunities to grow and learn and we as parents also grow and learn. We learn the best way for us to cope / deal / parent our children. Its a huge learning curb being a parent and its a huge learning curb living with ADD. As the years go on no doubt I will learn more not only about ADD but also about myself and my family and especially about what our daughter will be able to achieve.

All I can say is never stop trying. There will always be good days and bad days, thats being a parent and we don’t always get it right. When it goes wrong cry, stamp your feet and let out the frustration and then start again fresh and new the next day. ADD for me is either a good day, a bad day or its sometimes like groundhog day…..

 

Take  care

x Leanne x

Just another day with ADD

The last few weeks have been ‘one of those weeks’ over and over. On top of normal family life, working, school changes, holiday plans having to also care for my daughter with ADD and additional needs has meant the weeks have sailed by and seems to be getting on top of me. Being a mum is a full time job sometimes I wonder how the hell I do it without falling apart……

One thing I think is true of parents who raise children with special needs and disabilities is the constant effort to do what is best for your child and sometimes these decisions can upset the normal routines and daily life. We recently took the decision to move our daughter to a school closer to us. I had been ferrying my children 26 miles in total per day to and from their current school. Add in the stress of trying to get out of the door this just isn’t working anymore the older my daughter gets. All of a sudden she is turning 10 and with this seems to be a huge shift in the size of arguments and stress. If anything in the morning routine goes wrong and I mean anything even the smallest thing then the whole school run turns into a battle of wills. Anyone relate?

It’s hers  against mine. It’s time consuming and energy zapping. Having lived so long with her in her shell, in fact I would call it a bubble in a morning she has now come to the age where she is aware of how she is different and how her behaviour can in some cases get her what she wants. Normal pre-teen behaviour I hear you say…. But it’s so much more than that. I have never known anyone who can dig their heels in so far over the smallest of things. I don’t understand it and it makes me frustrated. Be it shoes, breakfast choices, to who is sitting where in the car 😡  ADD is certainly teaching me a lot as the months, years go on. 

Even with 7 seats theres always an arguemnet

No one child is ever the same and I think that is certainly true with children who have ADD. Every child has their own quirks, breaking points, triggers. No one child has the same symptoms but an array of them making them unique. We as parents have to learn how to adapt to take care of these children. My daughter at least for me has a sort of switch between a Jekyll and Hyde that’s running on fast forward. This is increasing more apparent now for me than it ever was. She does not stop!!! Constantly flipping from one thing to another, if someone has something different she then decides she wants it and will just take it. Sibling rivalry is at its best in our house as her sister compete to keep their toys, phones and even food. I have mentioned before the ‘egg shell’ state I sometimes find myself in just to keep the peace and to try and limit the stress that behaviour associated with ADD can cause. 

There’s also the other elements of ADD like the memory problems that for me cause me the most headaches and moments of sheer annoyance and anger. I struggle as I am really an organised person to understand some days why my child forgets. Other days I feel sad for the things she looses and events she doesn’t understand as she has forgotten them. So Yes anger…. It’s there. Just because I am a parent does not mean that I don’t feel frustration and anger. I try not to openly vent in front of or at my children but it is difficult. I struggle with myself over wether I should feel this emotion and also think where it actually originates.

  •  Is it anger at myself for the way I parent? 
  • Is it anger at my child for the way she behaves? 
  • Is it born of a frustration that people who have not experienced ADD can become so judgemental and blasé about my child’s behaviour? 
  • Is it the never ending struggle to get and do the best for my child? 

Well actually it’s a little of all those things. As a parent of disabled children I feel I should be well versed in how to look after them and their needs. Mostly this is not the case some days I feel lonely and scared of what the future may bring. A diagnosis of anything is no picnic and is never a simple cut and dry case. I do feel anger at myself. I do blame myself as a parent for the way my children are. It’s not my fault I know but some days when feeling low in myself it is easy to play the blame game.We parents put ourselves through so much. We tackle parenthood head on and do everything we can to make sure our babies grow and thrive. A mothers intuition is often something we rely on and for me at least it’s always been right. The day we parents get our children’s diagnosises can be the worst. For me being told my daughter had hearing loss at 2 and ADD at 7 were days that I don’t really remember much about. They are lost to me in a haze all I remember doing is crying and then getting on and parenting as best as I could. Yes there’s help available but here we seem to have to fight for most of it, there’s information abound on the internet but it takes some searching to find reputable, helpful non scary information.  

For parents starting out on their journey with a disability I would say

  • Grill your paediatricians, doctors, sensory support for as much information as you can📚
  • Try and have a list of questions when you go to appointments in case you forget to ask something that has been bugging you. Type them in your phone or not them down as and when you think of them. It’s hard to keep on top of them I know but it could make a difference.
  • Take each day as it comes, there will be good and bad days you have to accept this and it’s hard, really hard!!!!
  • With ADD pick your battles….this is a really hard one to do, you feel you can’t give in all the time as it’s not fair and naughty behaviour does need to be kept in check but how do you do it when their memory is affected and they have already flitted to the next thing?
  • Take some me time!!!! It’s hard but having some down time wether it’s a walk, going out or getting lost in a book we need to try and do something for ourselves and recharge our batteries. I tried for so long just to get on and be a parent but eventually realised it does not make me a bad mother to say help I need some rest and relaxation!!!
  • Don’t be afraid to ask for help….again another difficult one especially when faced with people who do not understand your child’s behaviours and needs but on the flip side if we do not give them that chance to interact and experience it themselves how are they ever going to understand

At the end of the day remember we are super Mums and super Dads. In the eyes of our children we are their superheroes no matter what the days, months and years ahead bring. For all the love in the world raising our children to be loved and accepted is in my view what it’s all about. Yes I get angry and frustrated but the milestones my children complete and the characters they are will never ever make me think for one second that I wish life had been different. Our children are who they are and we have this amazing job  ❤️


from my daughter # soproud

Please feel free to get in touch, enjoy the sunshine ☀️

Xx Leanne xx

http://www.marshamholistictherapy.co.uk