Why I Feel Guilty……mummy Time Out

It’s Saturday late tea time and I am sat in London Liverpool station. As a mum I don’t often get time to go away. Who does? We spend our time looking after the kids, the house, the pets, other halfs if in the picture and quite often we are working parents. 


Life with children who have disabilities and additional needs can mean that more often than not we also have appointments, caring for, fielding phone calls, chasing specialist’s, administering medication to the children to factor in. Time is something that can slip away really quickly. One minute I am in April the next it’s May and I stand stunned for a moment as can’t remember what day it is. This happens quite a lot it’s why I have become somewhat a control freak. My diary and phone have become my lifeline. Without them I wouldn’t know when, what or where and I become increasingly panicked if something creeps on that wasn’t in the plans. 

I like routine and although I don’t have any additional needs I do realise that on some level I understand my daughters need to have a routine and the helpless feeling that she feels when the routine gets interrupted.  Even if at the time it can become frustrating adhering to a routine. It’s that feeling of OH MY GOD, it’s like a lead weight and I feel more often than not I become moody and irritated when the day I have planned goes basically tits up which let’s face it is a common occurrence when we have children. 

So here I am tried but having had a great time away with friends. We have walked to Buckingham Palace, saw Clarence House, had a cocktail in the ice bar and a wonderful meal at a Gordon Ramsay restaurant. It’s been lovely to have grown up conversations, a chance to unwind although my feet are killing me and just time away from the normal weekend routine of children, husband, chores ect.


But sitting here I am starting to feel really homesick. I love being a mum, I moan and grouch and sometimes feel like my world isupside  down and that I am so low I feel I could walk away but some time out and r&r does wonders. Just one night away and I am missing my girls so much. I am counting the minutes to the train arriving because it will take me back and I will soon be in the thick of it. An early morning wake up call may make me backtrack in the morning though 😆

No seriously 😀 every mum has points where she feels low and I suppose the moral of this blog is please take time out for yourself. We are only so strong, we need to take care of ourselves as much as we take care of our children. If you find your losing your temper a little quicker with them, getting irritated quicker then it’s time to take that step and take some time. Read a book, go out with family or friends, put your feet up have a bath anything that helps you relax. Just take some time for yourself. Any amount of time from an hour to a night away can help you feel better able to cope and can mean the difference between a happy healthy mummy and an unhappy one. I love my children dearly and don’t ever want to feel like I have let them down, which on a bad day is how I feel. 

Take care all

X Leanne X 

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

 

 

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

Is it Time for School Yet?

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School holiday fun
As the summer holidays are drawing to a close its time to invariably start thinking about school. Uniforms, pack lunches, equipment and best of all routines. For us the worst part of the 6 weeks holidays is the lack of routines. Our daughter who has ADD finds it increasingly difficult being at home and not having that consistency. She can become over anxious about events and days out that are planned or god forbid spur of the moment trips.

Is it bad of me to admit that I sometimes find myself wishing the holidays spent with my children away just to get to the end of the holidays and back into a semblance of normality? No…. After years of feeling annoyed and upset at myself thinking I was a terrible person I have come to realise its not bad, its just part of being a human being and a parent. Parenting is hard work and when faced with entertaining our little people for six whole weeks it can make us a little crazy. Factor in the financial burden as well and this time of year can become more expensive than christmas.

For a child with ADD / ADHD routine is a large part of how they make sense of the world around them and how they fit in at home and socially. For most children school days are regimented, the same, children know what is expected of them and where they are supposed to be;

  • Wake up
  • Wash, dress, brush teeth
  • Breakfast
  • Gather school items need for day
  • Leave house
  • arrive school for the day
  • picked up at home time
  • homework / play
  • tea
  • bed

Our school day is all of this plus medication, anxiety, arguments, frayed tempers, stress, missing items, sibling rivalry , screaming all before 8.30am in the morning. I was not looking forward to this continuing especially now the kids are getting bigger and older. The stress of school mornings was basically really getting to me. I was getting to the point of feeling physically stressed and sick by the time we got in the car and fed up to the back teeth of the same arguments and screaming fits. Other parents mist have thought I was the most miserable person in the world turning up at school , offloading my kids through the gate and then driving away leaving my kids in the care of the school. Its just that normal children behaviour with ADD added to the mix throws so much baggage at us from memory loss to impulsiveness add in some OCD, hearing loss and anxiety school mornings were a force to be reckoned with and I was losing.

With this in mind we finally made the decision to move our youngest two to a school in the village which will cut out the car journey as well as giving us an extra 30 minutes at home in the mornings to help with my daughters routine. Also my second eldest will start high school with her sister this year and suddenly I will have only two children from 8am onwards on a school morning!!! Of course there will still be the usual arguing, memory loss, anxiety and stress but hopefully nowhere near as much and the later start will give our daughter with ADD more time to get ready and do her own routine before we have to walk the 4 minutes to school. I can’t wait!!!I am always amazed by how quickly we get back into the swing of things come school term time and by how much I miss the school run.My School time tips to parents would be:

  • Children with special needs I have found as a parent need more time, rushing leads to more anxiety and stress for both us and them. Start your routine a little earlier if needs be. Our daughter gets up at 5am whereas I am not an early bird but I have come to realise she needs this extra time in the mornings.
  • If changing schools talk to your child as much as possible about it. Mention it at every opportunity. They may get annoyed but I find it acclimatises them.
  • Try to drive or walk by the school a few times so they get use to the school run and know where they are going. Our daughter especially feels less anxious if she knows where she is going and how long it will take. You can do this even if they are staying at the same school so that they don’t forget where it is.
  • If its a particularly bad morning don’t worry about being late. I use to hate getting to school late but you won’t be the first or the last.

Enjoy the rest of your holidays together and good luck to all those starting new schools or starting school for the first time. To follow our journey please see http://www.leannesihm.wordpress.com

take care

x Leanne x