We Have to Believe in ADD Magic

Its that time of the year again, it’s December nearly the end of the year and as I sit here writing this I am starting to realise how shattered I feel. My whole year has passed in a flurry of hospital and check up appointments. living our lives from one appointment to the next is really starting to annoy me, it feels like I am losing time and year’s living a life based around my children disabilities. Do I sound selfish? Am I not better to spend my time thanking my stars that my children do not have more severe  need’s? in fact should I even be thinking and feeling this way at all, after all I decided to have children………

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Having three girls with varying needs is exhausting no matter what those additional needs and disabilities are. Any parent who has to spend most of their time worrying, stressing, upset, nervous, anxious and being on that emotional rollercoaster should be damn proud of the things that they achieve daily, even if its just managing to see friends or tidying the house. Living, working and making a life for ourselves and our children can at times feel like an empty black hole. We don’t get thank’s for what we do, I feel like at times I am my daughter’s battering ram, they can’t take out their feelings on anyone else so the but stops with me.

Christmas is a magical wonderful time of year isn’t it? No Not all the time, sometimes it’s hopeless, energy zapping, bury your head in a pillow type of magical. Christmas does not herald the end to your daily routine’s in fact it makes these harder. I have to worry about medication and if we will have enough, I booked a Christmas food shop weeks ago…. did I order everything I need or am I going to have to go out and get it with the kids in toe? They break up from school on a Tuesday….a bloody Tuesday like thats not at all confusing for a child who is so use to routine is it….there’s going to be fall out from that I can tell you, I have booked tickets for a show which I dithered about doing so I settled on spending the money and making sure we are at the back near an exit just in case we need to leave…will it be worth it with the crowd’s and the change of routine? who know’s  Christmas can feel at times like a waste of time and so disappointing for me at least the children never seem to think so which is amazing.

 I just feel so sad that my year, and my children’s year’s can be counted down by the appointments my girls attend, from Audiology to paediatrician to ADHD Nurse to even school meeting’s. They all add up and whats even worse is its never ending and I am already booked to next August with Audiology appointments. There is no getting away from the fact that our family life is a plethora of hospital appointments intertwined with birthdays and that I am getting older and more cynical as time goes by.

BUT……….There is one thing that this family has not yet outgrown and that is the magic of Christmas. My 13 and 14 year olds love the magic even though they know there is no Santa and its nice that they are now starting to take part in the xmas shopping. As for the younger two 11 and 7 years Santa still very much exists and we have been having some great fun (me and dad that is) helping those naughty elves to get up to lots of silliness. In a world that can be dominated by the symptom’s of ADHD, the lack of concentration, the memory issues, the anxiety, the inattentiveness, the daydreaming, plus the hearing loss, and other medical concern’s, the worry of appointment’s that are still to come around, this little bit of fun and laughter that we all have down to a couple of little elves may seem to the on the outside desperate and silly but to us it is a break from the norm and it is something that I can do at the end of the day and know that come the morning my children will wake excited and happy at least until the elves are found and then the drudgery of the normal day comes back full force.

Here’s a hug for all the parent’s this Christmas time where ever you may be and how ever you spend this Christmas remember you are amazing……….

For more tip’s on how I cope at Christmas see our previous Blogs x

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You, Me and ADHD

 

Putting my hand up in class….no way
Going up on a stage to preform….not me
Talking to people I don’t know…is there anything worse
Feeling out of depth in new situations…yep me

 

This use to be me and I bet its a lot of other people out there too. I had the confidence of a gnat growing up and into my early adulthood, and even then I think a gnat would have slightly more. I use to be shy, hated talking to people I didn’t know, would always be the one on the edge of the group, nodding and smiling wishing I was anywhere but. Having children at first didn’t change this. Yes I went to toddler group’s but made sure I went with someone I knew. I hated going to the weigh in clinic and I never asked question’s and I just did what I was told.


To be told that your child has a disability, special need’s and needs regular check up’s, investigations and so forth didn’t really change how meeting new people made me feel. I hated every appointment in the beginning, would nod my head and give permission but it was like there was someone else inside me answering. I would get butterflies on the way to the hospital for hearing check up’s and get myself all worked up, I would sweat, feel sick and then I would break down on the way home, disappointed in myself as there were questions I wanted to ask and I was too afraid to ask them.

For me I realised that this had to change, that I had to become the carer and voice that my children needed me to be. My daughter was 2 when she was formally diagnosed with a hearing loss and 7 when she was diagnosed ADHD. A big change in my confidence, and strength levels was needed.


I started by accessing online forum’s, talking to people online started to give me the confidence to get the answer’s I needed from the people we were dealing with in our daughter’s care. Being on a forum also gave me confidence to talk to people about my experiences and also to offer advice to those just starting out on their journey with parenting a child with disabilities.

One big recommendation would be to have a note pad and pen and jot things down that the doctors and specialist’s say in case you want to research them and keep that notepad in your handbag, coat pocket so that if you think of anything you can then remember to ask at the next appointment. Its easy to forget long words and to in some cases zone out when you are given news to process, and having to wait weeks for the write up letter to come through so you can remember can sometimes put you on edge.

I had to dig down deep but I decided that I needed to put my children first instead of my own discomfort at talking to people. I became my daughter’s advocate, her voice in a world where adult’s make nearly every decision for her. My confidence does still waver from time to time but I remember that I am doing it for these four amazing girls who are all looking to me to be their role model and for the families who are diagnosed daily and are placed in the same position I was …no way am I letting them down.


If you want to know more, please do follow our blog at http://www.leannesihm.wordpress.com

 

You, Me and ADHD

So your given a diagnosis of ADHD or ADD or any other variant, your sent home with a box of medication, and told you’ll be sent an appointment for a review in 6 months……WHAT NOW???


Well first of you’ll be exhausted from managing your child’s symptoms, having regular appointment’s, assessments, trips to the hospital’s and you’ll be feeling pretty crap. You’ll also be feeling like a complete and utter failure as a parent all the while trying to keep your child from imploding, your relationship and family life on the straight and narrow and did I mention wondering what the hell you do now?

For me I went on auto pilot, I did what needed to be done at home, I tried to be there as a wife and a mother, I tried to hold down a job but I ended up letting some of the balls drop.

  • I took my children to their appointments, I cared for them, loved them no matter what but felt annoyed at times, lost my temper with them and was stressed out
  • My husband and I drifted apart, I would take all my anger and frustration out on him, we shouted and argued and he eventually went and found someone else that would give him time
  • I took myself away from family and friends while I tried to deal with the symptom’s and the ever increasing feeling of guilt about medication my daughter worried about what they would think and feel
  • I gave up work, being able to talk to other adults about grown up non Homelife topics

What I want every parent out there to know is that there is no shame in dropping a ball!!! Any parent who has children can at times feel stressed out, unhappy about their lives and the way that having children can feel like the very life is being sucked out of you. Thats normal, and its especially normal to feel that way when we have disabled children. To many parent’s do not give themselves a break, we deal with so much when caring for a disabled child no matter what the diagnosis is. Some parent’s I know go through so much more than I do and I am in such awe of them that it gives me the strength to do my best for my own children.


Living with hearing loss is annoying when you can’t hear yourself think, it gives you a sore throat shouting louder than normal so they know I am angry, its fiddly trying to replace small part’s on hearing aids and when the kids are younger I could have had a dozen heart attacks thinking they had swallowed batteries but its manageable. We learn and adapt just like our children learn to adapt to a world where one sense isn’t working like it should.

Living with ADHD is harder. Its an invisible diagnosis which to many people still see as just a naughty child or down to bad parenting. Trust me when you have had a bad day anyway and someone suggest’s your parenting skills may be whats wrong…you do not want to be near me. The grown up thing to do would be to say “ok its my parenting so why does only one child out of four have the symptoms” my childish side just wants to bop them on the noise…. and another horrible word that has been associated with my child….spoilt!! spoilt my arse, I do not spoil my children and I hate that even in todays society people still can not accept that ADHD exist’s. Hello its been documented since the 1700’s!!!

So here’s a little checklist from me to you

  • Give yourself a break, take Time to digest the diagnosis
  • talk to somebody either a professional or someone that is in the same boat as you, swap tips and advice
  • research – there are some really good websites/groups and forum’s about with people in the same place as you
  • don’t cut out family and friends – you really will learn the power of friendship and know the love of family when you have a child diagnosed, they need you as much as you need them, talk, ask for help or even just a hug

To find out more about You , Me And ADHD, follow our blog

xx Leanne XX

 

Massage and sleep

Does massage encourage sleep?

We were those parents who struggled nightly with trying to get our daughter to sleep. Facing the tantrums, the tears, the heart wrenching sobbing and the ear splitting screams. We faced the ever depresssing ebb and flow of emotions from anger to frustration to just total exhaustion. 

Bedtime hygiene……

As a parent I submitted to the specialists and did everything that they told me to do….religiously 

  • No computers, TV, games console, phone, or any other electronic device
  • Black out blinds
  • No night lights 
  • Same bedtime hour
  • Soothing baths, bedtime strories, classical music, snacks, drinks 
  • Medication


I went on sleep courses where I felt like a failure as the rules never seemed to apply to my daughter. It became frustrating and to be honest I stopped going as nothing was making any difference. Our daughter was stressed out and so was I. 

Next step…

Late one night while my daughter was still trying to go to sleep I was googling for help and advice. Firstly what strikes me is that a lot of the research and information available is based on studies in America. While speaking to parents over the years sleep problems are a significant issue here in Britain so why are the specialists here not better able to help us. Why are we given medication and told to get on with it? Why are we told to attend courses to teach us what we are already doing? When will doctors accept that for some children sleep is a real medical issue and not parents making up symptoms in the hopes of a quick cure to make our lives better??

While researching one sleep deprived, weary night I came across mentions of massage. This is something that I had never considered before but having come out the other side of relationship problems, feeling insecure but determined with the thought of doing something for myself appealing I booked onto an Indian Head massage course. 

My Nephew enjoying 5 minutes of massage

The course took 3 months to complete and with my daughters permission I used her as a case study. Well wow from the very first massage move my daughter was a little less tense, a little less stressed and that night along with her medication she went to bed and actually slept. Well like you I thought it was a fluke but as the course progressed and my skills became more fluent and skilled we noticed a big diffrence in bedtimes. 

Don’t get me wrong massage is not a cure, sometimes it will work but others it won’t. The biggest thing for me is that it encourages the bond between me and my daughter. It’s time that we can spend together, relaxing. Massage also helps to relax me which in turn has a positive effect on my daughter. You see if I am angry and stressed she bounces off that, once I calm down I have noticed she does too. 

How can I use massage at home….


Massage does not mean that you have to go and train. A massage could be a back rub, twirling hair at bedtime, it’s about positive touch. For those who would like a bit more structure then I recommend story massage. You can learn 10 simple massage moves that you can use with any song, story, rhyme and can be used anytime anywhere not just at bedtime. We use storey massage all the time from camping to the doctors. Massage can help reduce tension and stress, can help to calm and refocus and with the story massage you can have fun with your children creating massage stories and….

Best of all mums and dads your children can share a massage with you!!!

If you would like to find out more or just wants chat please do contact me

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

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 

What an ADHD week…..SATS, Family and weekends

So before you start reading a warning, my head is feeling disjointed, please be aware may contain rambling…….

I find more often than not when I come to a Saturday I feel so tired I tend to do nothing if I can help it. It’s not that I am feeling low or depressed but after a week of being on the edge and the whole family tethering on the edge it’s nice to just kick back, watch rubbish on TV, baking and eating cake, enjoy the sunshine in the garden and just not to think about anything isn’t it?


Not possible when you have children and definitely not when those children have disabilities. You see their needs overtake everything. People looking in from the outside do not see. When your child has an unseen difficulty or disability it can be hard for them to understand what they can’t see. Yes I moan to friends and family generally because we have been caught out and they have seen how life can be, I am not ashamed of my child’s behaviour she can’t help it, but I sometimes feel powerless to help her. There is no respite, no down time and at weekends I find myself trying to snatch moments in the day where I can either slob out, breathe a few quick breathes or just try and empty my mind. Weekends are family time, time to be together with no real plans. NO!!! Really it just means Daddy is at home to help……..Going with the flow we try not have anything planned on a Saturday and Sunday which is not always easy as life steps in. 

After this week we need a weekend to just breathe and not do anything. The SATS as predicted caused stress and tension, tears and anger, frustration, sleepless nights. When you add in the build up the SATs seem to overtake everything for us from Easter onwards. Now that they are over there is a visual reduction in the amount of tension my daughter with ADHD is holding. She seems more relaxed and more able to focus on everyday tasks. Something she has been unable to do for the last week. Even just being asked to brush her teeth has caused an arguement because it’s something else I have tried to add into her already stressed out Day. The SATs have:

  • Resulted in tears and upset
  • Feelings of failure and that she is not good enough
  • Disruption of routine
  • Short frayed temper
  • Meltdowns at the end of the day
  • Bad dreams

This is on top of the regular feelings that are associated I feel at any age with taking tests and wanting to do your best. Just because my daughter has disabilities and difficulties does not mean that she didn’t want to do the best she could because that added even more pressure. She wanted to join in with the year 6’s, she wanted to do the tests, she wanted to do her best and make me proud. She makes me proud everyday, all of my children make me proud they all do their best and even my older two have had exams in high school and I am proud of their attitude and just generally a very proud mummy. I could ask that they work harder, I could ask that they concentrate better, achieve more but I feel with so much outside pressure they need the time to also just be children. I feel my job is to teach them life skills, to help them feel part of the family, to look after their health, wellbeing and happiness. School is there to teach them academics and while yes we read, I make sure their homework is done and I help them with revision I don’t want it to overtake important family time especially as I already have feelings of guilt about how my other children cope with their sibling. I worry about how me as a mum trying to deal with Hearing loss and ADHD effects the dynamics within my little family:

  • If I shout I have to shout louder if they don’t have their hearing aids in as otherwise all I get is “what?” About 110 times this just makes me a loud crazy mum
  • I feel like I am always referring arguements, and I don’t get it right and get accused of taking side which I try not to
  • I feel shattered by 9am mentally exhausted spending an hour solving disputes and arguments between the kids. Usually I have a least one storm out of the house.
  • The end of school comes and I drag my feet to school for pick up, most days I am already in a bad mood as I naturally start to anticipate the basic hell on earth if my daughter has had a bad day
  • When I feel low we eat more crap food because I can’t be bothered either that or we run out of food in the house bad bad mother


So here I sit with some old Doris day film on the tv, one daughter out on camp for the weekend, the other sat next to me while Dad helps with the younger two trying to keep them entertained while trying to cope with the effects of having no routine as it’s the weekend. Who ever said having children was easy

Take care 

X Leanne X