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………
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 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….
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
They are expected to be independent
Remember what they need each day
Organise themselves and get to lessons on time
Get their own food and Eat at lunchtime
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
Chatting daily about high school, familiarising her with talk of high school, answering any questions that she has
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
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
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
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.
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
If you have read any of my previous blogs I like any other parent raising children can go through a series of emotions daily. Some are bad days where I struggle with parenthood to the point I feel my emotions are boiling over, my neck and shoulders hurt, I over eat due to stress and I generally feel crap, but other days make me realise how amazing motherhood is.
I have four girls aged between 13 and 7 and being able to watch them forge their own paths in life is an amazing privilege. We bring these tiny people into the world and are their family, teachers and support network. When they become older these little bundles trust and rely on you for everything still and you know that you will move heaven and earth to protect them. That feeling never goes away…..even now my own children are growing I still feel that sense of protectiveness and love I felt the day they were born. Even more so sometimes, I want to protect them from society and peoples cruel words, from prejudice and judgement.
While I never thought I would raise disabled children as many parents don’t I have never hesitated in doing all that I can to make sure they get the best and I fight daily to ensure they are raised in a world that does not see them as different and unable but sees them for the amazing people they are and days like today when they learn something new makes me proud.
All disabilities are different and need care in different ways but we parents become their carer’s and their advocates. In a world that is slowly changing to accept that people with disabilities deserve the same rights that we do I feel my children have more chance of showing the world what they have to offer. This is why I believe in writing and sharing my experiences like other parents out there so that hopefully my children can step in to a world where disabilities are considered but not made to hold those who have them back.
Having children who have hearing loss is hard. I am forever feeling like I need to apologise for their loudness and their bluntness. My eldest has a mild loss and wears hearing aids and recently was bullied and told to stop staring at people. Yet when she explains why it becomes easier to understand when you are an adult but not when you are a child. You see she is not intentially being rude it’s just as she uses lip reading to help understand conversations around her, she looks at people’s faces and body language. If hearing loss was more talked about I feel that people would understand better. Another daughter with moderate hearing loss faces different issues, she struggles with high frequency words and again uses lip reading and body language to make sense of the world around her. Speech is such an important part of who we are and communication is everything. Not being able to communicate can become a very distressing and upsetting prospect. Relationships can become strained as there are barriers.
Since the new born screening programme came in hearing loss is is picked up earlier and children can be given the care they need to help them but that doesn’t help others who do not know much about hearing loss. As a parent I tell people and are open with them that my children have a hearing loss. In previous years when my confidence was low this was extremely hard and I would frequently get embarrassed if people stared at us or stared at my children’s hearing aids. After confronting one person once about staring it became apparent that he was just fascinated as he had never seen young children with hearing loss and that he had always assumed it was an elderly person disability.
After that I became more confident at being able to explain my children’s hearing aids as humans we are very nosy, intrested but most of the time prone to staring as we are afraid to ask. My children are no different and will stare at people in wheel chairs or people who are different from them which I teach them is wrong and that if they are intrested they should go and talk to them. My eldest has done this to a poor lady in a wheelchair. She wanted to know why and after speaking to the lady she assured me she wasn’t offended but rather happy that my daughter would take the time to talk to her. Don’t get me wrong I can’t speak for every disabled person out there but I know that now my children are getting older they would much prefer someone ask than stare. It’s how they learn and share awareness isn’t it??
Don’t get me wrong it’s not an easy task to teach any child right from wrong but teaching your child to accept k that has been started and we live in a world where everyone is accepted regardless of their disability.
The ADD diagnosis that another of my children has is the hardest disability as a parent to cope with. I find it extremely challenging as a parent as ADD and ADHD are still viewed by some as just a naughty child and how I must be a bad parent in some way spoiling my child or that it must be because I can’t cope. Having four children is also a no no in some people’s eyes. Thing is I can cope, it hasn’t broken me yet and the worse part is that some days it is not my child that causes me pain but the thoughts and actions of others. I feel I have to explain my child’s disability when meeting anyone new so they know straight away that there is a valid condition that makes my child act out. I feel shame and worry that old prejudices come to the forefront of a strangers mind and that they think I am being silly and I just have a naughty child, a bad apple amongst the four of them. I don’t!!!!!!
Having disabled children does make you open your eyes to the plight of others. I never dreamed I would have children who had disabilities. No one in my family has anything and even the children of my siblings do not have the hearing loss or ADD that my children have. The disabilities my children face are by no means life threatening or emotional as what other parents go through, but for us it can be our own tiny world of emotional turmoil. I still feel occasionally like a failure compared to my siblings. That I must have done something wrong to be the only one with children who are viewed as different. I feel shame when my children do something that is not perceived as normal but can be explained due to their diagnosis especially my daughter with ADD…….but I never fail to feel that love, protectiveness and proudness that I felt when they were younger and free of any labels.
Everything thing that my children accomplish makes me feel such amazing warmth and awe and that as young as they are they will continue to forge a path through whatever comes and be amazing people ready to help anyone and pass on their strength and experiences to those that are around them.
Children are not born prejudice or judgemental, they are born inquisitive , looking for knowledge and accepting. It’s this that we need to encourage
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X Leanne X
Routine for us as a family is the basically the difference between a good day and a bad day. There is no flexibility, there is no common ground, its the routine or the highway as far as I am concerned.
Routine is such an important part of my daughter’s life, from the way she sets about her morning to how she copes with planned events, holidays and general everyday life. Without a routine my daughter can be left feeling bereft and disjointed in an already confusing and sometimes overwhelming world that she lives in. Being able to do anything in a way that helps her to stay connected to the rest of the family can mean the difference between her being happy and contented to being frustrated and generally unable to cope. Trying to balance this need for routine with three other children can at times cause strife and I am on lots of occasions accused of favouritism, but this is not the case. As children they do not see the struggle it is to try and keep everyone on an even keel. Having your life to an extent ruled by routine is difficult and frustrating but having a daughter with ADHD means she struggles with memory problems, impulsiveness, concentration and being able to adhere to a routine can mean the difference between her being able to function or having that meltdown that all parents dread.
In some form or another we all have a routine of some kind in our daily lives. From how we get ready for the day to how we move through it and how we end it. For me routine starts when I open my eyes getting my self ready and the girls all ready for the day ahead takes the same form everyday
wake up then wake the girls up
washed and dressed
hearing aids in, hair brushed
coat and shoes on bags on
If I have managed to get the children all ready to go by 8.20am its a good day and means that having a routine in place has worked even if for me it feel’s like I have crammed a weeks worth of stress into 2 hours.
Never let it be said that the job of a mum or dad is easy. First thing in the morning until the children are all safely behind the school doors is the most stressful time of my day. Four children each trying to go about their own varying routines while co habituating in a small house brings that sense of cold fear when I open my eyes. There are days when I just want to bury myself under the duvet and pretend that I have no responsibilities, no reason to wake up and get going.
Having a young family is not all plain sailing even when you have great well thought, well meaning routines in place. This is never more apparent than in the school holidays. The effects of not having a routine during holiday’s is amplified because my daughter with ADHD relies so heavily on a routine and of course when there is no school day which is structured this can cause Anxiety and panic, a whole lot of shouting, fighting and stress for the children as well as me. How do I cope erm lets say on a bad day I don’t, I struggle hugely to get the motivation to carry out the same routine over and over. Its like my favourite old saying of “ground hog day” over and over. Everyday has to start and finish in the same way. It drives me crazy sometimes, wishing that for just once we could do something spontaneous.
So basically for me routine is the difference in being a crazy, out of control frayed round the edges mum to a semi calm and collected mum who after a strong cup of coffee and 5 minutes of quiet is ready to face the day after the school run. Until the end of the day that is. I love being a mum, I thrive on their happiness, watching them grow and learn and if I have to live with routines then so be it.
As I sit here writing I almost want to keep the last week to myself. Going on holiday with children can be fun, stressful and tiring. Going on holiday with a child with ADD can make being at home seem like heaven. But we have had significantly more good moments this last week than bad.
Even though I try not to when planning a holiday I have to weigh the pros and cons of how it will affect my daughter. Going abroad for us is not a possibility. Being so far from home would cause more upset than it’s worth and be a huge waste of money. So we holiday in Great Britain.
For the past few years we have gone a little further every time. Right now we are on the bank of Loch Ness and what a magical place it is. The journey here was split with a two night stay at a site in Gretna green. This enable us to rest as well as help our daughter with anxiety. Travelling with her is the worse, even short car journeys so why did we decide to come to Scotland!! I hear you ask? Simple….we adapt so much of our lives to living with disabilities that sometimes I feel like I just want to wish them away and try and be ‘ normal’ I know there is no such thing as normal, it’s just sometimes I don’t want to not go somewhere or do something because of our daughters disabilities. It’s all part of my mantra for wanting them to experience what the world has to offer!!! To not be held back, and to not be defined by their disabilities, as a parent this is getting harder everyday. A few times this week I have thought what the hell am I doing! Am I gluten for punishment?
Why do I have these stupid ideas?……….But for me it’s the magical memories holidays like this can make!!!
While planning this holiday there was also that fear of being beside a body of water and the hills and crags that surround us. What would happen if our daughter got impulsive and fell of somewhere😱, how would we cope mentally being on edge all of the time near water and up high? but again how much do you change what you do to suit the symptoms of ADD/ADHD?? For me my daughter is just as much at risk of jumping of Cromer pier than she is of tumbling down Foyers falls. It’s about keeping on the ball and reacting quickly to any meltdowns and anxiety attacks. It has been far from easy with a refusal to eat as much as she needs to, tantrums, swearing, hitting out I feel her behaviour has hit an all time low. It’s like she turned 10 at the beginning of July and since then we have been on a downward spiral.
Surprisingly though I have felt more able to cope with it this week. Dad is here and while she is more attached to me he has made a huge impact on how much she has taken her anger out on me physically. She dosnt care how much it hurts to be hit, or pelted with a stick because she has to walk a little further up the hill. The arms crossed head down pose has been adopted quite a lot this week but do you know what? We made it a whole 7 days with 4 kids, a dog and husband 😂 we didn’t go home early (our usual trick).
So all in all its amazing here! Where is here?
Camping and caravan club Loch Ness shores Inverness-shire
What a place!! I almost want to keep it secret so no one else comes here. We arrived on Monday and instantly I fell in love. Nestled right on the shore the site has amazing views and lots of space. Ideal for those with hyperactivity. Being nestled quite nicely in the surrounding nooks and crags Loch Ness shores is a stones throw away from amazing walks taking you up to Foyers falls, rope swings galore and beach side campfires where you can sit and Nessie watch. It’s amazingly dog friendly too so we could bring our Labrador poppy.
The site itself has a quaint little shop with your essentials…including marshmallows for those beach side fires! They also have tables where you can sit and plan your day, read or play games. We haven’t this time around but next time we will definitely be renting some kayaks and actually get on the water or if that’s not your thing they also have some small motor boats just perfect for doing a little water side exploring. There’s a small airstream diner offering breakfast, lunch and dinner for those who would like a break from cooking…..the sausage and egg roll we had yesterday morning was divine. There is also a huge, clean and accessible amenities block with toilets, showers, washing machines and a tumble dryer. My daughter likes to come and help fill and empty the machines. I think this is more to do with the fact there is the hum from the machines and it’s a small room ideal for getting away from everything for 10 minutes. While stood waiting a quiet sense of calm comes over you. There is also a play park for the children, mine have spent most evenings there before bed playing and making friends with other campers.
Out and about Inverness is about 40 minutes by car and again with so much scenery to see our daughter coped quite well. Once there there’s so much to see and do. We went on a boat trip with dolphin spirit. Sadly the Dolphins were hiding this time but the girls enjoyed their time on board and there was activities for Louisa to do on board like colouring, animal spotting so she stayed entertained. We also went to a very quaint and quirky free titanic museum. Inverness itself has all the shops you would find at home. We didn’t really explore all that much as our daughter didn’t feel comfortable walking round a strange town. Next time we will….
Culloden battlefield was a interesting walk. We didn’t pay to go in the exhibition as it would have been for us personally a waste of money. Our daughter can’t seem to hold her attention and concentration and I felt it would have been a sensory overload this time around as it was also quite busy. The battlefield itself was free to walk. Dogs on leads allowed which was perfect for us. We walked round and discovered the clan stones (Fraser for the outlander fans :). Louisa was a little worried as we were walking around and her anxiety was high but open space, fresh air, history and free….as a parent what more could you wish for.
With so much to see and do we have hardly had anytime for story massage which is not like us at all. Once the bedtime medicine has been given to Louisa all of the girls have been asleep within minutes. Must be the pure, fresh air and running and walking we have been doing, needless to say it won’t continue when we get home it never does ha ha instead we have been jotting down ideas for a Scottish holiday story massage. This is what we came up with….
Down on the shore of the loch
Taking a trip to the loch (walk)
Wonder if Nessie’s about (claw)
We walk we run we play (wave)
Down on the shore of the loch (calm)
The waves go up and down. (wave)
The birds fly round and round (circle)
The clouds go floating by (wave)
Down on the shore of the loch (calm)
We love to paddle and play (walk)
In this beautiful magical place (circle)
And roast our marshmallows (bounce)
Down on the shore of the loch (calm)
The Brown family 2016
Speaking of massage, mummies and daddies if you do come this way to the Highlands (and I highly recommend that you do) check out www.libraholistics.com The owner Lindsay is a lovely, friendly local therapist right on the campsites doorstep. Literally as you walk out of the site you are there 😊 Offering a range of treatments Lindsay offers tranquility and relaxation. The treatment room is relaxing and inviting and adds to the whole experience. In keeping with my mantra of how we should all have some relaxation massage is a definite must for those of us caring for disabled children. I had a back,shoulder and neck massage. Sleeping in a caravan does have its drawbacks 😀 but after the massage I felt much calmer, relaxed and ready for the long trip home a couple of days later.
Now the reality is that we are going home. Dad is going back to work and for 8.5 hours a day I am going to be on my own. It’s daunting!!!! In truth it brings an almost sick feeling to my stomach. How will I cope? How will I entertain the children? I am also trying to start the next step in my career as a holistic therapist, how will I cope juggling children, ADD and coursework?
Watch this space…… Take care all, enjoy your time with the children, make magical memories even on bad days and try to make time for yourselves I know I will and remember your not alone!!!!