9 years of world book day…..ADD-Back to Normal

It’s been a hell of a few weeks. Ever since world book day was announced my youngest has been bouncing of the walls excited to be out of the confines of her school uniform and getting to dress up. Although to be honest she’s a bit of a tomboy and so unlike her sister (L) the usual easy princess dress was not going to cut it.

After careful planning which involved looking around the house for the easiest non crafty, no hassle option I saw Dads flat cap sitting there and was reminded of one of my favourite books Burglar Bill, which E just happens to like as well ( or maybe it’s because I quickly slink into an accent from my childhood which brings forth the giggles) getting my youngest prepared with her costume yesterday morning for the belated world book day I suddenly realised that I have been getting world book day costumes ready for the last 9 years and that I still have another 3 years to go!!!

World book day 2013

That means between the 4 children Reception year to year 6 I will have created, sourced, bartered and paid for 28 costumes all for one day. How crazy is that…….

World book day is great but for the parents out there that struggle with children who have additional needs and routines it’s a nightmare, the constant worrying, tantrums and all out cat fights over who is going as who makes me glad that the high schools do not participate. Plus my children won’t recycle outfits either which I find annoying as L use to fit in the same outfit 3 years running but nope wouldn’t wear it more than once.

Now I love a good costume as much as the next person or at least I live the idea of it!!! but I hate the aggro it causes and the stress all for one day. I hate the arguments in the supermarkets with their massive selection of brightly coloured costumes that scream to kids “you need me now!!!” Yeah cause as a Mum of four I am going to pay £15 per costume per child each year…..erm no which then makes the rest of my shopping journey hell with shouting, prodding, hitting, bribes and anything else the girls want to throw at me. If I had a pound for every bedazzling display placed right at the front doors of supermarkets and the ensuing tantrums that follow I would be a rich women. Saying that as a Mum I have found the convenient, less stressful shopping experience of doing it all online. No aggro no bribery no tantrums and best of all no dedazzing, make Mum feel crappy displays.

Any way back to normal today, outfit that was agonised over for weeks discarded on the bedroom floor there to stay until Mum picks it up…..Happy world Book Day

X Leanne x

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A Little bit Of Technology….At home with ADHD / Hearing loss

I want to talk technology. Its all around us and with the generations who come into contact with any type of technology getting younger how do we as parents decided whats best for our children?

Growing up I remember when our parents bought us a saga mega drive and we played the lion king on it. Thats one of my earliest memories of technology in our home. As I got older and started high school mobile phones started to appear but it wasn’t until I was 16 that I was finally allowed one which then paved the way for my siblings to have theirs. Move on 18 years since then and internet, gaming systems, mobile phones, tablets, laptops, plus many many more are all around us.

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So when you have a child with disabilities and or learning difficulties how do you navigate this huge market to find the best devices to help your family? How do you decide when to introduce technology? How do you try and limit the impact of technology to reduce stress and anxiety.

Many parents on a daily basis rely on the technology that is now available to help them care for their children no matter their disability. For us living with hearing loss and ADHD present’s challenges when it comes to hearing outside, being able to listen to music and using technology to help reinforce learning, engaging with the world outside, schoolwork ect. That said there are so many things out there I wanted to share a few thought’s / idea’s

  • When do you give your child a mobile phone for instance? For us we decided that on starting high school this would be young enough to introduce the mobile phone. I didn’t see any reason for them to have one younger than this. We choose a mobile phone that we could link to our’s and so that we are able to control certain aspects. with a 4 year gap between the third daughter and the youngest this has caused upset but I stand by my guns. children need to learn phone etiquette and this can just add stress to an already fragile daytime routine.
  • Social Media? for Facebook the age is 13? but for me a child with special needs and or disabilities do they need the added stresses and pressure of social media? for my family no I don’t feel that they do, so for this reason my children do not have accounts, not that any of them have ever asked for one.
  • Educational games / laptops? I feel you don’t get a choice of wether you can or can’t introduce these. for a few years now I have noticed that the use of educational programmes on the internet has increased for homework and set by the schools. children are actively encouraged to use these programmes at home and do homework that is set. thats all well and good but for a child with ADHD and no concept of time and who can have trouble concentrating this can cause stress. on the other foot my youngest loves going on educational programmes that help her with spellings and maths.
  • Activity tracker’s? these are all the range at the minute and with adverts on tv showing children having fun it was only a case of time before one of my girls wanted one. we have recently bought the Garmin vivofit Jr. My youngest daughter is 8, has hearing loss and is really into visual items that she can interact with. The watch has an app which parents can use to add target’s, chores and see how active the child is. The chore part is my favourite, this is encouraging my daughter to get up and do the chores I would otherwise be shouting at her to do all by herself as she earns coin’s. you are able to set the coin level and the reward just like reward charts. you can also set reminders which is great.
  • Listening to music? For those with hearing loss / deafness the http://www.ndcs.org.uk which is a fantastic site and well worth becoming a member of no matter your Childs level of hearing loss, have a technology test drive where you can apply to borrow and test products that you would like to see and try before you consider buying. after problems with headphones in our house we were looking around and recently tested some Aftershokz bone conduction headphones, and I must say they were fabulous. having four girls three with hearing loss they were fought over quite a bit but they stood up to the pressures of an 8, 11 and 14 year old using them. Having no lead to be pulled and messed around with added to the appeal. As for the sound and ease of use once the girls had connected them to their mobile phones they found the sound quality really good and for me an added bonus was they could still hear me if I needed to speak to them. The NDCS have a range of products that you are able to try and the service is easy to use.

If anyone has any more idea’s they would like to share please do get in touch I love to share and hear what may be beneficial to my girls.

Xx Leanne Xx

Highschool – ADHD milestone

The last couple of months have been hard work. Having a child transition to high school is daunting enough when they don’t have special needs. Having a child that does have additional needs puts a whole new perspective on the transition for me. Having been in this situation twice before I thought I was prepared for my third daughter to start high school. How wrong I was….

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My daughter 11 years ago 

With so many meetings, notes, letters, forms, questions it has taken me this long to just sit and appreciate that this is a huge milestone in my daughters life.  Having a child with hearing loss and ADHD, learning difficulties worries me no end I struggled with her being in primary school how the hell I am going to cope her being in high school!! I seemed to have spent the last 7 years in a bubble which sadly has now popped as high school is such a different ball game

  1. They are expected to be independent
  2. Remember what they need each day
  3. Organise themselves and get to lessons on time
  4. Get their own food and Eat at lunchtime
  5. Be responsible
  6. Do the work set or have the confidence to ask for help

While for most children going into year 7 may not have as many problems with some or all of these for my daughter these are all milestones she has not yet reached. This is not through a lack of trying to get her to be independent, and trying as many helping strategies as we can to enable her to function as expected by society and peers. Its just some days this holiday it has more added stress and upset on top of everything else that we as a family have to try and overcome. Six weeks is such a long time for a child to be out of school, out of routine, away from their friends and peers. I worry…..

To prepare for high school we have

  1. Chatting daily about high school, familiarising her with talk of high school, answering any questions that she has
  2. Pinning up her school timetable so that she has regular access to it to try and familiarise herself with the sorts of lessons she will have
  3. Taking lots of photocopies of the timetable, I would advise doing this for any child starting high school as they will all loose it at one point or another
  4. Keeping the school uniform out and visual – its hanging in her room with her bag, shoes, pencil case so that she gets use to them, sounds silly to some but having new items can be daunting making sure my daughter is comfy with her new stuff is just as important
  5. Next week we will start getting back into the school routine in regards to times. When school starts we will need to leave the house at 8.20am so in preparation I’ll start getting them in the routine of up, breakfasted and dressed by 8.20am

Its also important to try and not project your own insecurities about your child starting high school. I am finding it really difficult to not become anxious, worried and over protective about how she will cope. I know its my job to worry and to make sure that she has what she needs but she also needs me to be positive and reassuring. I need to let her be as independent as she can be but as a parent and a carer I also need to make sure that she has the support from us as a family as well as the school.

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This is where trying to build a good relationship with new teachers and heads of departments is key. I have spent time worrying that I may be seen as that annoying parent who email’s questions and has had numerous meetings with the senco, but for us this has allowed my daughter to familiarise herself with the school. Its during these meetings that I was put at ease and told I could continue to email if I have any worries or concerns. We all hear the terrible stories where schools don’t communicate with parents and there is no support, teachers don’t receive training in special needs, there is no money, EHCP’s are notoriously difficult to get – we have tried twice and it boils down to being in schools that meet her needs. Parents are left feeling angry, upset and disillusioned with the whole education system. I know at times I feel that way.

High school is the next step up, the next milestone and the fact that there is no playground and no parent – teacher interaction first thing in the morning and last thing at the end of the day in my opinion shouldn’t matter, as parents we should be able to get the support we need and be able to speak to those that care for our children in our place. My advice don’t keep quiet, fight for your children, like I said its not another planet its just high school and lets face it high school is difficult enough for any child.

Good luck to all those taking their first steps into high school in the next few weeks parents and children alike

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

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