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

The back to school build up

Have you had enough yet?

I know I have…..I’m Bored mummy, Your stupid Mummy, We never do anything Mum, Why can’t we go out Mum, Mum, Mum, Mum

Some days I really wish I could change my name to something that would make me belly laugh every time they say it. THE 6 WEEKS SUMMER HOLIDAY is bad enough for any sane person, we spend more money, we have to fit in work and when ever I go to get something to eat the locusts have visited. Even aged 9, 13,14, and 15 my lot still have a hard time amusing themselves. I don’t know why? I remember going out on my bike for hours with friends, climbing trees, maybe getting up to mischief (it was the 90’s) my lot would rather wait for me to tell them or rather shout at them to do something so they can shout back its boring, or they want to do something else ARGH

My girls like routine, they like to know in advance what we are doing, where we are going, for how long and who is going. Its exhausting when its a school week and most of the effort is concentrated on getting them to school. With the summer holidays its ike a free pass for my girls to morph into whinging robots that repeat themselves like a stuck record. I suppose I may be luckier than some as there are only literally 8 days left to go before the start of the new term, not that I am counting down or anything……….

To tell the truth I love the idea of having my girls home for 6 weeks. No school run, pack lunches, shirt ironing for a whole 6 weeks, we can go out, stay in, chill but the shine soon rubs of as I realise very quickly that unless I have a full itinerary to rival the best travel reps I am going to fail miserably and descend into a midst of parent despair. For those parenting children with Autism, ADD,ADHD and other Neuro-developmental disabilities the chaos of no routine soon becomes apparent. Even me, I find I can not cope with the ‘No routine’ I feel like a lost puppy waiting for instructions.

Saying that we have had some lovely days out, planned in advance, weather checked, food sorted, money sorted. Days at museum’s, Sea life centre (aged 9 and 13 they have sadly now outgrown), 2p machines, Beach, swimming, camping ect ect

I feel like I should be sad that summer holidays is nearly over and that they will go back to school soon but to be honest….. NO I AM NOT, Why? well the last few days start to drag, they don’t start back till nearly the end of the damn week which just causes even more confusion as like L says school should start on a Monday and I am bloody fed up with the I’ll need this, This don’t fit me, Can I have this, I need a million pens, I need a new bag cause this one is mouldy, I don’t like my school, I don’t want to go to school.

The build up to school is a bloody nightmare for all parents, wether its the cost, the planning, new schools, Good luck to you all See you on the other side 🙂

Every day Brings New Challenges

Well with L having just turned 13 years old the world seems to have got a lot more interesting and the hormones seem to be trying to kick in. The medication Elvanse seems to be coping with this added pressure of “Teenagism” and is still keeping her focused and relatively calm for most of the day.

At a recent medication review a higher dose was talked about but the clinic and I both felt that L was in a good place at the minute and that we would wait. None of this you are ever warned about when you get the initial Diagnosis. Your not told about the endless medication reviews, assessments ect ect but when the service is overstretched and appointments become further and further apart you pretty much feel like you are winging it and you come to the conclusion that you are just like other parents who have winged it for thousands of years.

My Grandmother always says that this generation are different from hers, Naughtier, louder and have more things wrong with them ( its fine I made my peace with how some people can sound when it comes to disabilities) , are they really? Have children not been a pain in their parent’s arses throughout the ages, testing our patiences, testing the boundaries, being bored, getting up to mischief and dealing with emotions and hormones? Having disabilities?

My Grandmother bless her is in her 80’s and will freely admit that she never knew anyone at school with disabilities, never knew a person who wore hearing aids unless they were old and still even now does not fully understand the hidden disability that is ADD and Autism. Is this challenging….Hell yes and bloody annoying and irritating and also a little bit sad.

There is no way on earth that my children are the generation that suddenly become to hot to handle. I am not failing in my job as a mother just because my children back chat me, argue with me, have their own very strong options, and more self awareness that I had at their ages. Having disabled children is not a new occurrence they are just not hidden away anymore and are able to achieve as much as they want to. For my girls I feel they are luckier than previous generations, with the help of technology making their lives easier and more interesting. They are able to engage with the world around but it doesn’t stop them rebelling and being annoying by taking out their hearing aids and then accuse me of shouting because they have not heard me ask the same thing three times!!!!!

Thats ok though!! As a 30 something year old I too hadn’t met anyone with hearing aids who wasn’t old and I didn’t know anything about ADD and Autism until 2013. Its just challenging having to explain my Childs behaviour…..yes I know I should not have to but still as a parent I think its an innate part of raising children, you protect them and if that means explaining why in the middle of a campsite in a tent I am shouting then its something that I am going to do and as proven this weekend the lady next door didn’t mind as her grown up daughter had hearing aids.

The Autistic side is a little more tricky and while we do not have a formal diagnosis we are on the way to being able to better support L and explain to her why she is the way she is. Every day is a challenge trying to figure out the best way to defuse an argument, help a frustration or just to get some peace and quiet. Its tricky though, on one hand I hate the challenging behaviour, the embarrassing loud comments, the swearing, the frustration but on the other hand when she is not there for a few days I miss it!!! Don’t get me wrong I get tired, emotional and am always aware that the non epileptic attacks I was diagnosed with last year could come back at any point but this is my life and these are my kids and I’m going to own being a bad ass women, caring for her children, holding down a job and a family and living life cause lets face it life is a challenge anyway

Just remember we are all Great, Super, Special, hardworking Human’s!!

Xx Leanne xX

Faffer Induced Mummy Tantrum

So last nights antics accumulated in Mummy having a tantrum brought on by my Childs ability to Faff…..

Yes, Really this full grown 35 year old women had a full blown toddler style tantrum, resulting in an upset mummy, a worried Daddy, rather surprised children, a bed soaked with water from a drinks bottle and a broken iPhone – the joys of parenting

Photo by Lucas Pezeta on Pexels.com

Let me explain……

Last night was a night where I lost my shit, after an hour of repeating myself ‘ Get in to bed’ I was at my wits end. This is life with a Faffer. So just to clear up what I am talking about, a Faffer is….

someone who is also referred to as procrastinating, a Faffer is someone who wastes time doing things that are unnecessary, and instead of what they should be doing i.e. they should be getting into bed but are instead tidying up.

My daughter may have ADD, Hearing loss, being assessed for Autism, definitely has the family trait of being OCD but oh my god is she a Faffer. You ask her to do something and she does something else first, I say get in bed so she starts tidying the bedroom, come and have tea and she gets in the bath, do her homework and she cleans out the rabbit. Fair enough for most parents having a child that randomly carries out chores would be a dream come true but not at bedtime, maybe 3 hours earlier when I had asked but definitely not when its bedtime. She then gets angry with me for stopping her cleaning her room, bare in mind its been an hour of trying to get her into bed. I finally think I have cracked it and they are in bed so go to the toilet, I just happen to then hear a shriek go running to find She has broken her sisters headband – Not good as this sister is attached to the headband so badly I have to buy them in batches of 10.

So the next problem is I can not get angry (usually) as if I bite or feel snarly she is sensitive to it and she becomes snarly too, unfortunately this time it happened. It was me standing there repeatedly saying the same thing over and over and getting madder and madder and ‘Her’ getting madder and madder – overreaction? yes, uncalled for? maybe did it make me feel better? hell no as I then had to go and buy a new bloody phone this morning.

Last night was just like any other night except wether I was tired, irritated as waiting t hear if I can have my driving license back after a medical condition, just fed up I don’t know but I just could not cope with the faffing and the stalling tactics. Hence Mummy had a tantrum, I didn’t get on the floor or shout and scream, I did however have to do an emergency mobile phone find as I broke one ; opps.

Photo by Rafael Barros on Pexels.com

I still don’t know why it happened or why after the same routine of faffing that happens every night I suddenly just could not cope. I suppose its being human. Wether is kids, family, or people around us we can all find our buttons being pressed and at some point we need to blow of steam and let it out. Being a parent of disabled children makes that harder to bear as I always feel guilty afterwards, that I shouldn’t behave like that and that I should always keep my cool. Thats an ideal though, its not real world. I spent years beating myself up about how good a mum I was. Looking after children is bloody hard work, we second guess ourselves, we come up against the Faffer’s and at some point we all feel like losing the plot. The key is to not hate yourself, to pick yourself back up, dust yourself down, smile and begin the cycle of patience once again. I love my children very very much and would do anything for them, just sometimes mummy needs to have a tantrum too……

XX Leanne XX

ADD and NOT Afraid of It

So what is ADD? Well how the specialist first explained it to me back in 2013 is its “Attention, Hyperactivity Deficit Disorder without the Hyperactivity.” Great yes, because that explanation made all the difference and really gave me an insight into what expect while raising a child with this diagnosis.

So here is what happened…

Having left the hospital with that explanation, a 7 year old in tow with a supply of medication after the initial cry moment, I thought ‘What the…….’ In some ways it was good to finally get a handle on why our daughter was different to her three siblings, why she didn’t sleep, fidgeted, couldn’t concentrate, delayed learning and all that and that finally her hearing loss was not to blame, but at the same time I was 29 years old, had never heard of ADD, had no experience of ADD and I remember thinking what now? It was a long road of ups and downs and trails and errors, with questions and me constantly questioning myself. Even now, I still research and learn to better know what ADD is and how best to help my daughter be who she wants to be.

And Now……

Fast forward 6 years and I am now the mother of a 12 going on 13 year old who has a mind of her own, is not afraid of anything including her own disabilities, still struggles with understanding the world around her, still needs her mum to explain daily life events and feelings, is a total stickler for routine, has the concentration of a gnat unless its a medical drama, still can’t sleep, has more and more periods of hyper focus in relation to said medical dramas, wants to be a paramedic but worries she won’t be able to, hides all symptoms of anything in school, is still behind her peers in school but making progress and I could not be prouder.

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It has not been the easiest of roads the last 6 years. There have been times as I have previously blogged about that I have struggled and not been able to wrap my brain around the concepts of having a child with ADD. Oh and now she may also be having assessments for Autism as well…..joy but I really would not change it for a second, even to prevent my own health problems.

She really is amazing. She is kind and funny, exasperating and annoying, she has the look of an angel but is a devil at starting arguments. She does not get on very well with her siblings but if any one them are in trouble she is the first to step in. She is loyal to her best friend even though she struggles to make and keep other friendships and she never ever lets any of her disabilities or special needs get in the way of her living life.

Outside of school she is an active member of her Scout Troop earning badges and learning new skills and never misses a chance of being in the great outdoors. More recently L started with her local Army cadet force – why I hear you murmur, because they are regimented and routine and perfect for someone that needs that kind of atmosphere!!!! Her uniform is immaculate and with support she can manage to take part even with her short term memory problem. L has even started to stay for the weekend camps -something she would never ever have done before and even though her sisters go as well L has the opportunity to be a part of something that keeps her active and celebrates her achievements. What could be better?

L is not afraid of anything, will throw herself in wholeheartedly as long as there is someone there to ensure she stays safe. Thats my job, to make sure she is safe and while she is willing and able to try I will let her and support her as much as I can, I never want her to be afraid of who she is

XX Leanne XX

When life gives you Lemons…… Mum Coping with a change

Its been a while since I have felt able to put pen on to paper. The last year has been one of the most difficult I have had to face in a long time. The loss of freedom, of structure and my own self worth. Having been diagnosed with Non Epileptic Attack disorder I have had to take a step back which has left me some days with a feeling of failure and morose. I feel guilt even more keenly as now not only do I have disabled children to care for I have had to step back and take time for myself.

Me

I have always been someone that takes what life throws at them and somehow tries to make the best out of it. Raising children with disabilities and special needs, a marriage break down and reconciliation, retraining in a new career to fit around my children, meeting new people, asking for help are all ways that I have tried to make the most of who I am and what I have to offer and turn it into something good.

The last year has had a major effect on that ethic. I use to think I was invincible, there was a never ending to do list in my brain. I had places to be, appointments to do, I was running the kids around, working and being a mum. Now I have to rely on other people, my children have had to learn to do some things for themselves and I feel that I am only living half a life. That sounds sad and pathetic but when you are raising children with disabilities your life isn’t your own, I felt I had purpose, I was the primary care giver and with the flip of a switch this has all changed. That said I think my girls are amazing, its been a long road of getting use to sudden changes in routine which has lead to behavioural issues, thrown into having to become more independent before they were ready but they have struggled, overcome and never ever cease to amaze me.

The Girls

Is this a bad thing?

To be honest the monotony of routines, going it alone to appointments, the never ending routines that my children had to work through each day was getting me down, I just did not want to admit it. I didn’t like to ask for help, I didn’t want to seem weak….. but in the end I had that choice taken away from me. My brain decided enough was enough and that it would start re booting when ever my emotional state got to high. The theory is that some past event has an emotional tag attached to it so when I started to get stressed out the emotion would take over and re start my brain. The daft thins was I could be hoovering, in the middle of an challenging episode with one of the girls or about to fall asleep, there is no rhyme or reason for it.

Why am I writing now?

Do not go it alone!! My best advice for any parents out there raising children with special needs and or Disabilities is do not go it alone. You never know when you are suddenly going to need someone else’s help. Yes its hard to get professional help, yes families are unique and sometimes difficult and you may not feel you need a support system, but you do. Wether its support groups on Facebook, websites, specialists, group meetings, what ever it is if its there use it. Our girls have hearing loss, ADD, anxiety, OCD and possible ASD, and there are some amazing charities out there mostly set up by parents who have been where we are and are willing to share. I have met some lovely people through groups such as the NDCS and ADHD groups and I don’t think I would have managed this last year if I didn’t have a support network in place.

As always am here to chat / share if you would like to get in touch. Next time….. ADD and not afraid of it

XX Leanne XX

My Top Tips for Christmas

Some days I can’t believe how quickly this year has gone and with Christmas now upon us its hard to believe that soon it will be 2019.

Christmas with children can be magical, fun and hectic at the best of times factor in disabilities of hearing loss, Attention deficit disorder, sleep apnea, Reflux and Possible Autism ( now being referred for this) it can be a rollercoaster of an event which often leaves me feeling shattered and wishing for it to be over. With the girls being older I thought it would get easier but it doesn’t, they are just now able to vent and shout at me. So to remind myself and to offer some advice to other parents heres my personal do’s and don’t’s of Christmas.

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  • Do try and plan as much as possible in advance and write it down. Having a daughter with ADD, two with possible Autism and forgetfulness making sure that they know what is going on is always the best way forward. we have a white board on the fridge, plus a calendar and as my girls are now a bit older we have a shared calendar on the phones. Everyone knows what is planned and has time to adjust especially if there is something new. Calendars are also good for noting changes if you are able to in advance.
  • Don’t try not to plan anything to elaborate, save your self stress, tears and frustration. I find that my girls are more than happy to have quiet festivities with people they know and love and trust rather than attending huge events. For some it work’s but for us it’s just more stress and anxiety.
  • Do make Christmas dinner as easy as possible. I always do a help your self meal, yes it means more pots to wash but by being able to choose their own food it takes some of the stress away and reduces the chance of Christmas dinner ending up in an argument.
  • Do have a backup plan – Sometimes things do not go to plan, be it illness, weather or something else don’t beat yourself up about it. Have something easy planned ready in case. For us this is having something that they all enjoy doing be it watching a film, going for a walk. Having a back up plan while still has challenges due to the anxiety surrounding change can sometimes diffuse a potential explosive episode.
  • Register online and have the food shopping delivered or if you have to take the children make an evening out of it and go later. We all know as parents how stressful the food shop can be in December. Put yourselves in your children’s shoes and imagine the noise, the people and your own frustrations when out shopping. If I can manage it I go alone if I can’t we have tea first or choose a supermarket with a restaurant so they can sit and chill while I shop.
  • Don’t be upset or angry if your children prefer their own company and hide themselves away. This is not a failing, I use to get so annoyed that when we go to see family/ friends or family /friends come to us and the girls either stay in their rooms or have their headphones in. You know what does it matter? they are there, they are safe and it allows you time to spend with the people you want to be with Sometimes it can make for a very quiet event.
  • Do take some time for yourself, wether its a bath, going out with family / friends or just going for a walk. Our health is just as important as the health of our children.

I would like to wish you all a (fingers crossed) happy, healthy Christmas and a happy New Year. You, Me and ADHD will be back in 2019 with fresh antic’s, more tried and tested activities and more insights into life with Children.

Take Care

XX Leanne xx

Play – What affect does this have on you as a parent?

Play – Every child develops through play from Building Bricks where they can hone those fine motor skills to the make believe play where they make sense of the world around them – I have just learnt to stop wasting money on puzzles, board games and any toys that need putting together!!!

Having children with varying disabilities has sometimes made this aspect of childhood difficult. Though three of the girls are very close in age they have never been into the same toys. My hearing daughter has always loved muscical toys and toys that she could interact with but these toys were sometimes unsuitable for my threee girls with hearing loss. These three girlies are more about the touch and the sensation of the toys and were much more into the toys that didn’t put pressure on them to listen, sit still and concentrate. Toys such as lego which we love, Teddies and Dolls, Tea sets, Kitchens item’s that they could get their hands on and were not sitting there trying to hear what it was saying. Now of course my eldest two are 14 and 13 years toys are now a thing of the past and its all about their mobile devices which I find really sad.

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For my younger two with their hearing loss, although a moderate loss I had difficulty finding interactive toys that were loud enough for them to hear properly and I became fed up with trying. I had to instead choose toys that were not only noisy but had lot’s of visual stimulation, so light’s, moving part’s and even used toy’s that moved by themselves. Books with moving parts were great or ones with puppets attached that could be used to visually stimulate and make them laugh. While this was relatively easy when they were very small, the progression of their development and their interest in particular types of toys has made this increasingly difficult to find toys that hold their attention.

Hence I became that mum that family and friends laugh about – If a toy wasn’t played with for a week it was sold and replaced with something else as it just held no interest to the girls any more.

All four of my girls have had very different interests, likes and dislikes. This meant that they are aways into different things and so hand me downs were difficult. One daughter now 12, has ADD, Hearing loss and is still very much into her dolls and teddies and pushchairs. The make believe world that she makes with them enables her to use the social skills she has been learning, allows her to explore her feelings and helps her to work through them. I very often stand outside the door and listen to the conversations she has, but also I hear the sadness sometimes when one of the dolls feels left out.

While this kind of play keeps her entertained for hours it can also make her particularly susceptible to Hyper focus. This is where she becomes very fixated and focused on the particular task at hand and it can make it difficult as a parent to refocus her, get her to come and eat or to join in with family life. There are some activities such as the older activity types like beads, making things, puzzles and board games – especially board games just do not suit our daughter, these are sometimes not even half finished before she has moved on to other things.

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So really its all about trial and error and this can make the whole experience of toys and finding play ideas expensive and frustrating for any parent. The shops are full of toys that look so inviting on the shelves, even the supermarkets have them but with prices creeping up I really don’t want to be paying so much for a toy that may not get played with so I find the best place to get toys from is….. Drum roll please!!! – Carboots and selling sites. These have become my preferred toy shopping venue. There is so much on offer, second hand out there and once cleaned the toys are as good as new.  Sometimes even the toys are brand new toys just released that someone else has paid for and their child is not interested and they have cost me a fraction of the price and can then be passed on to family, friends or charity shops to help others.

What affect does play have on you as a parent?  well sometimes it can be stressful, disheartening, annoying and you feel like throwing the towel in but other times to see the amazing interaction, or the amazing effect a particular toy has on your child is priceless.

xx leanne xx

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