Transitions, EHCP Ramblings…..Sloppy Life in Realtime

The last few days have been the hardest I think I have had for a long time. My brain feels like its on auto pilot, its on a non stop rollercoaster and I can’t see the end. I am screaming on the inside while trying to look normal for my children, family and friends. So sorry but here is as good as it gets my brain is fried, here are my ramblings…..

Why….

EHCP’s, Transition to high school, impending residential trip, family holiday’s, work, hospital appointment’s, general life……

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holidays planned

As a parent of children with disabilities life is never quiet or simple or normal…… there is no getting away from it watching my sister’s I envy them some days because everyday there is something else I need to remember, something else I need to do, to tell, write, ring, order, the list goes on and on. To have a bat shit crazy couple of days feeling like a legless jelly baby who hasn’t a clue what they are doing is normal right? Life gets to us all so if you see me in the street with a bright red face, unbrushed hair, no makeup and looking like I walked of the page of a 70’s catalogue its because I am trying to be a mum, carer, advocate, researcher plus everything else. I go to sleep dreaming of the printer and what its going to spew out next, I wake up to the face of my 10 year old daughter grinning at me before commencing with the first of many rude words, screams, shouts, tear’s or just plain crazy bouncing of the walls until the medication kicks in and she can calm down and concentrate on getting ready for school.

The life of any parent is filled with ups and downs….

Its no different for any parent, we all worry the same, we all do the best for our children the same way and we all have good and bad days thats what I keep telling myself.

So why do I feel like I am loosing the plot well the EHCP for example….theres so much conflicting information out there I feel inadequate in my role as a parent in best supporting my child. Anyone who knows what and EHCP I bet knows what I mean. For those of you unsure its the education, health and care plan which is for those aged 0-25 who have additional needs and is there to coordinate your child’s educational, health and social needs and it also sets out any additional support that they may need. To me its a mind field, another obstacle which I have to try and hurdle over but with amazing people behind me and with the right knowledge I will go blindly forth and try and get my daughter the support that she needs to keep progressing and being able to live as normally as she can and be able to access everything there is to offer in this world.

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Hanging around in her hammock

Then couple this with the impending transition to high school and I feel like a first timer when in fact this is my third child to go to high school. In reality I think I am unprepared mentally in the back of my mind we are not near that stage but in reality we are. This period in our lives has crept up on me so quickly that I haven’t had time to process it never mind my daughter although after a positive look around the school she hasn’t mentioned high school since. With my older two its all they talked about for months before starting year 7. Here in lies my biggest worry as I am unprepared and so is she and it also makes me realise that maybe some part of me has not fully been able to process that my daughter has special needs. Does that make me a bad parent, I don’t think so its just I have tried to stay strong and keep things together and try and make life as normal as I can for my family when in fact I am scared that if I drop a thread our whole family existence will start to unravel like it did 4 years ago.

Raising disabled children is a juggling act. There are so many balls that I am afraid to drop but I have managed to keep them all in the air so far but when there are balls added like high school, the EHCP, new appointments, referrals I am so worried that at some point I am going to drop something and as a parent thats what I have nightmares about.

So tip to myself…..look after myself, take a break, delegate, ask for help, have a massage

take care

x Leanne X

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

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

 

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

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

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

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

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


 Parenting skills and Disabled children……

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

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

http://www.leannesihm.wordpress.com 

 

Food…Worry and ADHD

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

Setting meals up as a buffet style help yourself sometimes helps

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

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

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

Little and often 

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

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

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

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

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


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

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

 

 

ADD Our way…..Holistic Therapies can They Help?

When it comes to therapies in my mind the best ones are the Holistic ones. In situations where your child’s disability is not deemed significant enough for therapies through the health care system or if alternative treatment options are not offered or available Holistic massage is an avenue I would recommend. Massage is a fabulous therapy suitable for nearly all. Massage therapies are about healing the body and the mind using positive touch to receive tension and relax allowing the body to heal itself.

They have not only helped my children in ways explained below but they have also given me a purpose, something to concentrate on and a way to contribute to other parents and children living with disabilities.

As a parent trying to do the best for my children is always at the top of my list. I am their protector, their teacher as well as their mother. For me having disabled children has had a profound effect on who I have grown to become. Before the disabilities I worked full time, I then had children and went back to work part time. Work fitted around children until it came to the point where work no longer fitted around the myriad of hospital appointments. After finding Holistic therapies I decided to train in Holistic Massage with the main purpose being to aide mine and other children and their families .

As a parent I had never really considered the benefits of massage before, I used to have reflexology on my feet whilst pregnant but that was as far as my knowledge went although I was always intrigued as to how a therapist could tell I had a bad back from my feet and I always found it relaxing and felt better in myself afterwards. Massage has long been documented as having a profound positive effect on the mind and body as far back as 3000 years especially in the East.

Leanne Brown

So when I felt lost in a world of confusion and loneliness I began researching how best to help my child diagnosed with ADD while trying to understand what the diagnosis meant for my daughter. One answer that kept coming back was Holistic therapies and how the benefits of massage could really help with some of the symptoms. As a parent and a Therapist I have found the main benefits of Holistic and Indian head massage for a child with ADD are:

  • calming, aides deeper relaxed breathing
  • relaxes stiff, tired, tense muscles
  • aides concentration
  • aides sleep
  • aides circulation

There are lots more benefits for massage but for a child with ADD these are the most important benefits that they can receive from Holistic massage. My daughter has had regular holistic massage now for two years and while it is by no means a cure it has helped her considerably in times where nothing else has worked. Massage relaxes and calm’s which when you are on the go all the time and your mind struggles to switch off can be a god send. By relaxing and being able to settle her mind my daughter finds that her concentration unmedicated can improve as well as her overall wellbeing. I have found that my daughter can hold a lot of tension in her shoulders which leads to back and neck pain and headaches. Since having regular massage these symptoms have almost disappeared. Don’t get me wrong there are some days where massage just does not work or it can take an hour just to get her to sit still long enough but once she does the benefits far outweigh the negatives. My daughter is never forced to have a massage it is her choice and one that even as a parent I ask her permission. As a therapist I am client led which means I follow their lead.

 Massage should never been seen as something to be forced into but as a choice that the child can make for themselves. This chance to make a choice themselves empowers them and can lead to increased confidence. 


Another great therapy that we have found works well is Story Massage. This is where we put 10 easy and simple massage moves to her favourite songs and stories and the effects are positively fab!!! This type of Massage therapy is one the whole family can get involved with and can have a positive effect on family relationships especially the relationship between siblings which can be charged and strained at best. It gets the whole family having fun while using positive touch to bond. Something which can be difficult in todays society. Story massage also gives my daughter a voice, a way to channel her feelings and it enables her to tell me stories she has made up or how she is feeling as she is talking while giving me a massage……yes mums can have a story massage too!!!!

Find out more about our journey at http://www.leannesihm.wordpress.com

x Leanne x

 

A mothers Decision…..ADD

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. 

Please feel free to get in touch 

Take care 

x Leanne x

The magic of Lego at Christmas

Being a mum at Christmas time can be magical and soul lifting. Your children are little bundles of happiness bringing light into the dark. This time of year is no different to any other time of year when raising disabled children. It has its ups and downs, lows and highs but I cope….don’t I? Its christmas, presents have been opened which means lots of new and exciting toys, the big meal has been cooked, eaten for another year and the new year is upon us. Its the time for family, for laughing and for relaxing isn’t it?

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Our house is full to the brim, and usually with four girls it start’s to feel like a battle field on the cusp of war. Each side posturing at each other and goading each other trying to get a reaction. With one of the eldest glued tightly to her phone and the other glued to her laptop with the excuse of doing homework the youngest two have been amazingly entertained with colouring pens, drawing paper and that wonderful invention LEGO!!!!

Usually by now the magic of christmas has worn off and my youngest are fed up and bored and waging war on their older sisters and on me. You see our daughter who has ADD and Anxiety finds the holidays exceptionally difficult as there is no routine. What to you and me would be a time for play and relaxation causes her anxiety and pain. Pain in that she can not cope mentally and physically. The lack of routine disorientates, upsets and angers her. She becomes a social Piraña not able to cope with having her sisters and parents around full time and not being able to have her own space even though she has her own room owing to her little sister wanting to play all the time. This means that she becomes stressed out, hitting out and shouting out. Not unusual with her diagnosis but its so much harder when she is at home and not in a routine. Routines help her

  • Make sense of the world
  • Interact with her elders, Family, Professionals
  • Control her impulses
  • Reduces her anxiety

The exception this year……..

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The exception this year being that the gifts are still being played with. The marvellous discovery of lego this christmas has led to an amazing amount of building, concentrating and general family time. We have had Duplo since the children were little but felt it was time to upgrade and move onto more interesting lego sets. Ergo we have found Lego Creator and Lego Friends and this is something that the whole family has got involved with, so much so we braved the sales to buy some more!!! .

We have found Lego helps:

  • Development of fine motor skills…. the bricks are smaller
  • concentration…..Following the diagrams means that they have been sitting there for ages following the instructions
  • Sharing……helping each other to find the pieces that they need
  • Motivation……..”I’m Bored” is a common saying in our house, Lego has become a good motivator to getting the children to sit still
  • Creativity…….watching the bricks they put together become a car, a plane has been amazing
  • Socialisation………perfect for mummy and daddy time helping the girls to figure out the harder parts

Its been a great success, so much so that we have been looking for more sets to keep the flow going and undoing the sets we have so that they can be built again. The creator 3 in 1 sets are especially amazing as when they are bored with one vehicle they can rebuild it into another one……oh my god why didn’t I discover this beforehand!!!

Don’t get me wrong it hasn’t been all lightness and fun, there has still been times that I feel like walking out especially when I am being hit and shouted at but I have to stand tall and remember that its the condition that makes my daughter feel and act like this. The anxiety and behavioural issues makes her act out and the memory loss makes the world a confusing place and school holidays for us like so many parents with children with ADD and ADHD can be a challenging time.

A great tip for next christmas, try some lego and watch their imagination’s and creativity take flight.

Happy new year to you all see you in 2017

xx Leanne XX