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
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…..
EHCP’s, Transition to high school, impending residential trip, family holiday’s, work, hospital appointment’s, general life……
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.
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
So Christmas is coming…..we started elf on the shelf mid November and been counting down since 98 sleeps till Santa. I feel all Santa’ed out already and we are only on the 1st December. How do I have a child who lives with short term memory problems but can remember every day that santa is coming soon? If I believed in magic I would say it’s magical but it is more down to obsession than it is fairy magic.
What I do love about this time of the year is the enthusiasm and the magic that Christmas still holds for my daughter who has ADD (Attention Deficit Disorder) . She is 10 and still a firm believer that the elf comes alive at night and that santa brings her presents Christmas Eve. We have written and sent our Royal Mail letter to santa and she is eagerly awaiting a reply which in itself causes problems as she gets upset that the letter hasn’t arrived yet and very day I we wait I wonder if it was worth telling her and sending the letter.
In a society where most children grow up very fast I love that she is still able to hang onto a little childhood magic even if it does drive me mad. So top tips for managing a super excited ADD child 😊
Try not to curb their enthusiasm yes it’s only December 1st but if Christmas is something they are excited about I have discovered that it’s also a big motivator. Early elfs on the shelf truly can be magical especially if the elf does something naughty which the child relates to and it can even for a second make them realise a particular thing was naughty for example our daughter wrote on the wall so the elf wrote on her drawers in flour. She immediately told the elf off and so I explained that this situation was similar to what she had done. It’s baby steps to helping understanding.
Countdowns are great. Most phones can now down load sleeps to santa apps and these are great for ADD/ADHD for giving them a visual countdown. My daughter checks it several times a day but is comforted by the visual countdown.
Advent calendars we don’t tend to have. Tried them a few times and they got eaten in one day. This year I have decided to buy them one and use it as a reward but we shall see if it works otherwise it may be a case of mummy gets to eat lots of chocolate.
School holidays for us the kids break up on the 16th December this leaves a whole week of disturbed routine which will have an effect on how my daughter thinks and feels. This is when….”is it Christmas? when is santa coming?” Will start. I plan to have lots of activities and making days with them this week leading up to Xmas day. Yellow moon have lots of amazing craft sets that are very reasonably priced. This won’t solve the issue but will hopefully keep the kids entertained long enough for daddy to get home from work 😂
Wrap up warm and go for walks when the sun shines. Break up the monotony of a boring routineless day by getting out for even just a 10 minute walk. Remember when in school they have 15 minute break times. Try to emulate the structure of school as much as possible as this may help with the anxiety of them being at home and in close quarters with siblings.
Don’t get me wrong this holiday like any other will have me likely tearing out my hair with sibling arguements, behaviour issues, frustration and just down right anger but as always and as a mum I will do my best to keep the peace and try and ensure that everyone has a great Christmas. By the end of it I will need some serious pampering and so really need to get my massage treatment booked in ASAP 💆.
You see there is no day off when you raise disabled children. The problems that are there don’t disappear on Christmas Eve. You still have to be a mum and dad and teach your children and comfort them and care for them. Supporting them in school, trying to get the right care for them, doing your best as a parents. If I was Scrooge I would say that Christmas just adds to the stress, anxiety and frustration especially for us parents. I haven’t even started wrapping presents yet and I have usually finished them by November. I have just been so caught up in my children’s needs and care, work and family that I just don’t have anymore to give at the minute. This makes me look like a miserable cow, someone that lets people down last minute but I just feel so weary and like I am holding my head just above the water. These are the dark days that I talk about in previous blogs. These are the days where I need my arse kicked by someone like my husband or sister. These are the days that are alright to feel, they are not wrong, they are not taboo but neither are they novel. It stinks to feel so crappy one minute and ok the next. But it does not make you a failure, it makes you stronger and it makes you a better parent.
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!!!!