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

 

 

Christmas Magic… ADD Mayhem

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

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Christmas Magic

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

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

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

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

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

Take care

X Leanne x

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….so what now mum?

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 jot 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
  • 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

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.

ADD has taught me so much in the last 8 years and its teaching me a lot more as the months, years go on. 

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. There is no training manual its a case of trial and error!!! Its always interesting and helpful to speak to other parents for support, advice and just for someone that understands what you are going through. Facebook groups are a good place to start.

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Elements of ADD will cause you frustration, heartache, anger and you may feel like you are on an emotional rollercoaster. Memory problems for me cause me the most headaches and moments of sheer annoyance and anger and tears. 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.  A diagnosis of anything is no picnic and is never a simple cut and dry case. Just because you can’t see a disability does not mean its not there.

 I do blame myself as a parent for the way my children are….. Its easy to isn’t it?

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. 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.

At the end of the day remember we are all 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 ❤️

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Please feel free to get in touch
Xx Leanne xx
http://www.marshamholistictherapy.co.uk

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