Browsing Tag

parenting

Noticeable

Posted on 5th April 2019

Sebastian will be fifteen months old soon, at fourteen months Ariella had just started to crawl. I try not to compare siblings but S is a constant reminder of typical and it is difficult, perhaps even impossible to not notice. I remember being surprised the first day that S looked at my face and brought his own hand up to touch my cheek, I could tell by the way he had done this with such a light touch it was intentional. You only had to look at his face to know he was making a connection, a social one in that moment. I can’t remember how old he was but it must have been younger than six months old. I see S as so much older because the baby stage with A has stretched out in front of us, every single step, every skill takes so much energy for everyone involved.

We have a review meeting planned for next week which is focused around whether or not A fits the profile for a diagnosis of Autism spectrum disorder (ASD), this follows a multidisciplinary review that was done back in January. No matter what the outcome of the review I know because I live with A that she is autistic. Every single waking moment is focused around transitions, anxiety and sounds. I know because she has never once held her hand to my face or looked me in the eye the way S does. I know because I still wait for us to have a real conversation. If Autism isn’t the right word then we are making our own profile for a neurological way of thinking that has no diagnosis at present.

It will be nice to draw a line under the last year of confusion on every diagnosis that we’ve gained so far and understand. With understanding we can tailor experiences going forward and we can read and learn how to best support A to enable her happiness. We can stop trying to make a round peg fit in a square hole, I don’t care if we have a round hole in a field full of square holes. But I do care about the unbalance and distress that is caused by the former and while we don’t need a diagnosis it will help a lot with understanding.

In the evenings when I am stirring up the second dose of Ariella’s medicine, watching her eat her ice cream (which she has to have after her evening meal else the world has ended – we make our own now with smoothies) I often think about how something simple like this has become so normal to us and yet for most children, taking a twice daily medicine which you need to give a good stir due to the large quantity of pills dissolving in it would be a massive challenge. Routine has a large role in this, we have a daily rhythm which is held up by blutac and keeps things ticking over. It helps a lot with A’s anxiety and she finds reading the visual timeline very helpful. Somedays it does feel too rigid for me but I know if we don’t keep to it then we are more likely to see a flare of challenging behaviour (kicking, biting, screaming, hitting, repeated phrases, head butting, pushing).

Motivator toys sit in a little accessible basket nearby, only to be used while sitting

We’ve started potty training, yippee! Part of fully understanding the different ways and approaches to how children with ASD think has helped me buy more appropriate reading materials. I’ll have to keep “Oh Crap, Potty training” to hand for S when it’s his turn to potty train, instead I’ve been reading “Ready, Set, Potty” which is aimed at potty training children with Autism and developmental disorders. It makes so much sense to me now why typical potty training methods just won’t work, you are almost relying on a set of typical behaviours and for a child to know what to do naturally. Let me tell you, the only thing that has ever come naturally to A is eating. That’s it, the only one thing we’ve been able to follow her lead for, which is really strange for me because I generally believe that you should follow the child. Only issue is of course that relies on the child having a desire to go.

With that said, potty training so far is going really well given the challenge of communication and resistance to change. We are using a visual time line and motivating toys, no going back now! I’m really keen to keep going and reach that level of independence for A. It will be a joint effort between us and nursery but we are all working for the same goal and I couldn’t ask for more right now. When it comes to potty training S I am hoping it will feel like a breeze! It is the last day of term today and I am expecting the change in routine to holiday to be a challenge for A, I expect Monday will bring lots of challenging behaviours but I am also excited by the possibility of really cracking on with potty training at home. I think having consistency and being able to take A to the potty every hour in the same place will really help, nursery is of course a new environment whereas home is not.

We have visuals stuck up on a mirror nearby and the bathroom is themed with teddies!

Despite how noticeable the difference is, it is different but not less. It has allowed me to think about things in a way I would never have. Would I even know what a visual timeline was? Or have such a understanding of developmental delay and rigid thoughts/routines? I don’t think so. Things are taken quite literally by A and sometimes that can cause some of the biggest laughs ever for everyone involved. I am constantly reminded how lucky I am actually to be part of both parenting worlds, although I wouldn’t wish the struggle on a child it has taught me to look at the world differently and that there are qualities within people that are rare and valuable beyond what we see on Instagram and social media.

Noticeably different but not noticeably wrong.

An educational journey – EHCP

Posted on 16th January 2019

I had expected before the birth of A that my first child would grow and one day go to school, I expected that school to be much like the school I attended growing up. There have been quite a few turning points in the last three and a half years in which a large change in mindset needed to begin, but my main focus has been about what is best for A and how we can meet her needs. To enable this to happen, we’ve very much accepted the advice of the professionals, now facing schooling that’s never been more challenging to accommodate.

Specialist schools

Since beginning the process of simply discussing schools between us, her paediatrician and various nurseries it became clear that deciding what type of setting was the first priority. At which point A had already attended a nursery with a typical placement, minimal allocated support and it became apparent to me by the end of that time that while we could force the route of mainstream educational it might not be the best option for A. Whether or not others those that will offer placements and ultimately decide will agree with me that remains to be answered, but in light of this I’ve spent the last few months visiting specialist schools in the area and soon realised how different they all are.

Always looking around the schools I would be pleased to see an environment which is was tailored at educating children with additional needs but later the realisation would hit that with an bang – this is where we are. The responsibility as a parent trying to find somewhere that can offer the care and education we’ve strive for at home for A is overwhelming. It certainty feels more so than ever impossible to ignore the challenges coming ahead.

Since she was born we’ve been told lets wait and see, I still remember sitting in a room with one paediatrician who said “I see these kids all the time, she has a bigger head that average that’s all. Don’t worry about it, that’s all it will come to you’ll see”. We later moved and that same paediatrician called me out of the blue when he had been included on a letter for A, someone had clearly just forgot to update the address list. He asked how she had developed did she have any delays? When I told him he replied “Oh”. That’s all, I don’t cite this story to shame him but to show why I feel your instincts as a parent are so important, even when in the face of experience. Perhaps I’m too pessimistic but if I had allowed myself to believe that, imagine the crash of the realisation that would have been just delayed for later.

It would be far easier if I could ask her what she wants of course, or take a peek at the future to work out where might best suit her. I’m told however that nothing is set in stone and should things change so can her setting. Ultimately I come back to the truth that probably the very best most tailored individual education for A could be given at home, socialisation is always cited as one main drawback and while I imagine this could be remedied with groups it’s really a non issue when you aren’t interested in children anyway. In her most happy, low stress environment where she could focus on any part of learning that she enjoys – in fact if anything children seem to cause more stress. Home schooling is my backup plan to alleviate the pressure of finding a suitable setting by September, but a huge commitment on my part and her brother.

I know going forward what she needs, I just don’t know how that is realised with in an environment like school. At present have a great environment for A, she’s well supported and happy in her nursery school, has access to every therapy when required. But soon it will all be stripped back and assessed, allocated. A will get x amount of this and x amount of that, parents have to argue for the therapy and support. When once it was just open access based on need a great shift occurs.

We are sitting on the very edge of this prepared to see what comes back as A’s plan going forward. It’s a complex process which I am thankful that we have so much support in navigating whereas many parents don’t at all. It’s certainly not a fair even playing field and it really should be. We should hear soon about the type of placement that the local authority (LA) deems correct for A, they’ve come to this decision by requesting up to date documentation and reports from every therapist. Once we know what type of setting then those settings can be approached by the LA to see who has places available ready for September. Then we wait to hear back and cross our fingers that the one school I visited that I felt would suit her is firstly in the right category and secondly has places to offer.

In many ways a structure educational environment has been a wonderful breakthrough for A, structure is predictable which reduces anxiety and as well as this there is structured learning. When portage first became involved A would sit surrounded by toys and not play with them, with us showing her how to play still it took many attempts hand over hand. We had a very easy and hard parenting journey, easy because we had a child that never tested any boundaries – you could leave her in one place and she would still be there happily. The thought of moving or investigating just wasn’t there. In many ways to date it still is not, in my view we have several years of hand over hand parenting. Modelling behaviour and ways to interact with various different objects, learned through others, television or us. Some of those less desirable then the others but all very controlled. In this regard A is perfectly suited to the right tailored educational environment. On the other side it takes tremendous effort to constantly model play, behaviour, speech, keep to the sensory demands and as well the physical demands of helping someone getting around.

Day to day life is very rigid and it can be quite difficult to remember to turn off the music when certain TV shows hit certain parts, to turn off the music in the car before it changes to a song A will not tolerate. While these demands seem completely reasonable to A how do we accommodate the very rigid routine in a group setting?

But to gain access to the curriculum she needs someone to model, repetitively and help her overcome the other barriers of anxiety, mobility, understanding and social skills. With this said I’m also reluctant to believe that having a shadow for your life is in all a good thing, but learning where to step back at the right times is in my view key.

I don’t doubt this struggle of trying to find the appropriate educational setting is seen across the board for all children. Many of my friends who have just decided on school options have not done so lightly, much thought has been placed and many schools visited to determine which best fits their child and their own family circumstances. I’m sure it’s a testing time for everyone!

Featured Lifestyle

Gratitude

Posted on 31st December 2018

I really love the eve of a new year, it’s the one day that we try to reflect and seek gratitude looking at the year overall, rather than the ups and downs as we are in them and also who doesn’t love fireworks? It throws so many people in reflection and I think it makes us better people to do so. That’s exactly what I want to do here and if you’ve been watching my instagram you may have noticed I’ve been reading a lot of positive psychology books lately, for good reason – it’s not been the kindest year to us. We’ve had an eventful year full of very worrying downs but also some wonderful highs of which I am grateful for. I’ve met some wonderful new people this year who have made me laugh constantly, laughter seems to be the key to any dire situation. When you experience the very low it really illuminates the caring and the kind around you, so thank you so much for being you!

I am so pleased to be ending the year happy despite every down we have had and with it every challenge we have had to overcome. Getting the bad out of the way but acknowledging it, starvation, coeliac disease, epilepsy, sepsis, screaming, rigid routine and cherishing the good, Sebastian’s birth, my birthday weekend, transforming S’s bedroom, 100k genome project, the endless beach trips, the gym and Canada is important. Accepting that no matter what is handed to you there is no point worrying about things beyond your control has been my saviour. There are always issues no matter where on the scale they seem to you, to us they always seem to be the very worst because you only know the worst you’ve experienced so far. Perspective is key and for me allows me to look at the bigger picture and realise that my mindset had a huge ability to change how I feel afterwards.

I am grateful that I was able to experience another year where some of my friends were not so lucky. On the eve of a new year I am able to look ahead with positivity because I know that no matter what lies ahead we will face it together and that’s all that matters.

Happy New Year!

Being Mum Parenting Weekly Update

A change of mind

Posted on 9th September 2018

Last month I drafted a very long post about social media and connection, I was about to publish it and then I came across an article online which completely changed my outlook. It was about humanity and the blame culture, I realised complaining about humanity and the way we rely so heavily on social media was counter productive.

Rather than complain and point fingers at faults, how could I work to improve my own use of social media? It’s our responsibility to model the things we want to see and value in society, kindness, compassion and meaningful interaction. I think lately this ties in well with the current issues we are experiencing globally and the social awareness towards our environmental impact. For one currently in the eye of the media is the plastic in the sea, the strange weather we’ve been experiencing – both of these things have raised important questions about bringing home the important of our own impact on our future.

Starting again using a more positive framework, I’ve recently taken a break from my own personal social media accounts. It’s so easy to use up the idle time between tasks with a quick swipe of Facebook and scroll down the feed. I wanted to be present more mentally and I’d like to maintain more of my friendships outside of this viewfinder kind of window box world.

I have found being more “offline” has meant I am much more productive, much more aware, much less attached to my phone although I do still use it for Instagram which I love. I find little snapshots and images are far quicker to process and disconnect from. Right now I’m using my time to keep on top of all the tasks required to organise two children, one with many medical needs, two cats, a household. I’m finding far more time for myself, I now attend the gym which I have always thought about doing but never wanted to invest time into during the evenings. I’ve lost 20lbs in weight (comparing my pre pregnancy weight) and am the slimmest and the most physically fit that I have ever been in my life thus far. My original motivation was to get stronger as my wrists and arms were beginning to ache every day carrying Ariella, fortunately I have done this but she also has started to become stronger herself and needing me slightly less so now I am beginning to lose my tolerance for carrying her at all.

I’m not sure it was constructive for me to always be so visually aware of the things that children the same age as Ariella are doing. It’s much easier to just live in the now and work with her timeline than to see what she “would” of been doing had things been different. So far it’s going really well for me, my friends have mostly adapted to letting me know when they want to chat and use more direct means. It does mean that occasionally I miss announcements but much like sending a letter in the post compared to email, most of the time it still arrives.

We’ve been making some positive changes generally to our lifestyle, Sebastian is now using Eco nappies which is really just one tiny change but it makes me feel a little better. I can’t quite get my mind around going full cloth after comments about having a poo spatula from others but we are trying the Eco Naty disposables that are biodegradable. So far I really like them, they aren’t as absorbent as say Pampers which we use over night, so need changing about as often as cloth would but it’s a good positive start on removing something that really does not degrade – nappies and we use a lot of them!

What have we been up to?

If you’ve been keeping tabs on my instagram you will have seen that we all entered the 100,000 genome project last month – linked in case you would like to read more about the project. It’s the very best chance we have to find a diagnosis for Ariella, I am so pleased we are finally in the system and although it will be many years (around 1 – 2 at least) there was the possibility we could well have missed the deadline as it is now closed. Last May 2017 the discussion of the project being the next step was raised, but we didn’t hear anything back and after chasing we have just met the deadline, I can’t tell you how horrified I would have been if we had not been able to enter. It’s a very important project in which the whole genome is considered against the medical record data, a position in which the NHS is well suited to accommodate in England. Hopefully in future years the data gained will benefit in more ways that I can imagine, certainly if it can help stop future families living a lifetime of uncertainty about their child’s health that will in itself be more than enough.

We also saw Neurology at the same time when visiting St Georges Hospital, Ariella will be having another MRI at the end of the month this time under general anaesthetic. Probably for the best given the last MRI she woke up during it.

Sebastian is doing well, progressing well, sleeping well, smiling – he is a very happy chap with his two teeth. Every day is interesting and every day I’m reminded of how different my experience is this time around. He is almost crawling now, luckily everything is baby proofed still. We still have our stair gates in place as Ariella has just started to crawl downstairs. I am looking forward to getting more one to one time with Sebastian once Ariella starts preschool next week Ariella has now finished nursery but previously nursery days were often unwillingly Ariella admin days.

I have had a whole week with the two children, it has reminded me that actually once you get into a rhythm is isn’t all that bad. To keep busy and feel somewhat in control I planned the weeks events out in my new paper diary, this worked really well and I was able to prepare Ariella every day better. I don’t know why I didn’t do this before, it’s much easier and you can actually make good use of your time. So often I would just waste time or not be efficient with being “outside” and doing the outdoor tasks all together. When you have so many steps to come up and down with two children attached to you, you begin to appreciate reducing those trips up and down. I was fortunate that this past week Ariella’s seizures have calmed down slightly so she has been happier in herself.

This week we tried to make use of some of the memberships we have with the National Trust and RHS, we visited the local Arboretum which both children seemed to enjoy. We took many trips to various local parks to feed the ducks, use the swings and go for walks. We stopped by our local garden centre for ice cream and to use their garden piano which Ariella is so fond of and finally ending with a trip South to the beach, soft play and swimming. Ariella sleeps better when she’s had some good daily physical exertion now, if we stay indoors the whole day then bedtime can be a little prolonged.

September means new beginnings for all of us, preschool every day (eventually) will be quite an adjustment. It will feel I’m sure much like the school run, I hope we adjust to it okay. I hope that Ariella adjusts to her new “nursery” okay too, she will get lots of support so I’m sure that will make it easier for her. Right now she is often going through weeks of phases where she is quite confused, repeating phrases, screaming and generally seeming quite distressed. It feels like there is a lot going on neurologically, I hope that we get some answers soon so that she can carry on moving forward more and we all have a calmer environment. The change in state seems to go hand in hand with seizure activity, absences, tremors, a new kind of seizure too where her body muscles jerk oddly for a few seconds then stop.

Medication is going up but once the seizure activity passes we have a few weeks of calm (with the normal challenges) again.

I often feel like I can’t quite keep up with the updates of what is going on, each week is different. I try and write about what we are up to and then the goal posts will change!

Being Mum Weekly Update

Docket, Docket? What’s a Docket???

Posted on 1st September 2018

I don’t even know how to articulate the true mental voyage I went on yesterday. The day started well with a trip to the gym, making use of the creche facilities – but from start to end it’s felt like someone is puppeteering from above, trying desperately to steer me into a state of emergency.

Let me rewind back and explain how my last nursery toddler free day ended in being more about the toddler than the baby. Monday I received a text message to tell me Ariella’s prescriptions were in, perfect I thought – I’ll go get those Thursday on a nursery day. Taking Ariella into a shop like that in which you usually have to wait a small or potentially large amount of time is not an activity I’d choose to do ever – unless I have no choice.

Thursday comes and I visit the pharmacy, no epilepsy medicine just all the others. We have enough to last the day and Friday but not the weekend. The pharmacist assures me that it’s no problem, they aren’t sure why it wasn’t repeated but they would put it through as urgent and it should be ready Friday morning, at the latest Friday afternoon. It’s a little less time than I’d hope for, granted but I had no reason to think it wouldn’t be completely fine.

That evening Ariella does something really odd while sat in her highchair, an odd jerk and muscle twitch – we have no idea what happened but we do know it wasn’t right and are waiting for more information on this. There has been a lot of screaming, lots of hand tremors lately so we’ve had a heads up that something isn’t quite right, while concerned we move on – with plans to query this later.

Friday arrives, I go to the gym and just as I’m getting in the car to head home my phone rings. Nursery, well what is this going to be? I think pretty much every parent assumes the Calpol call, am I right? I never assume that anymore because I’m child is way past the Calpol call. Absent seizures, lots of absences reported throughout the day – I get a call later to say some odd things were occurring while she slept. Eight members of staff are surrounding her watching and waiting to see if she’s going to have a seizure. I know why because it’s terrifying alone, being alone and responsible for administering rescue medication is not to be taken lightly.

I get home and call the pharmacy to check the medication is in, my second task of the day. It hasn’t arrived yet but is probably going to be here by lunch time I’m told – call back later and if not the pharmacy will chase. Feeling a little unsure about waiting and relying on someone else to action the task I drive to the doctors surgery to speak with the receptionist, the very lovely lady informs me that the epilepsy medication has fallen off the list – somehow. Explained why the repeat didn’t go through, explained why the following urgent repeat didn’t go through too.

I called the doctors last week to check that it had processed through as the medication is often changing, increasing in dose and up until that point being distributed every two weeks. How did it go from all there and correctly change to every month, to not being there at all.

The receptionist takes all the details down and goes off to find a doctor to sign for a new prescription so it can be sent to my pharmacy. All being done urgently, I leave pretty reassured that I will get a phone call, the lady was nice and I could tell she understood the implications of going cold turkey from that medication. Lots of seizures. This lady followed through with her actions, thank you receptionist lady.

I do get the call, it’s ready at the pharmacy for me to go and request, for them to fill it and I would soon enough be heading my way down with my todo list ticked off. Reassured I head into the pharmacy, they look and say “It’s not in stock, but we can order it for tomorrow (Saturday)?”.

My brain just stops for a moment, the very same lady that I spoke to Thursday and had a conversation about the medication being required for Friday. The same lady who promised to chase the GP for me but never did knowing it needed to be filled the same day. The very same one is staring at me telling me there is no stock in…Today.

I explained again it needs to be administered at 6am Saturday morning and we run out this evening. They begin calling all the local pharmacies asking if anyone has any stock, three calls later – no stock. Finally one pharmacy does and the prescription is released, two boxes kept back and we can pick it up whenever. Relief again. Sorted, but not ticked off the list just yet.

Jamie heads out while I feed the children their dinner and reaches the new in stock pharmacy only to be told he needs a Docket. What the heck is a Docket? I get a call from him saying that the pharmacy won’t give him the prescription without a docket. I explain that it’s completely electronic, the original pharmacy was sent it electronically, we have no paper documentation after he tells me this docket is a piece of paper.

It’s now been several hours since my very last nursery day started and I was still without my child’s pills that she needed. I phone the new pharmacy and speak to them directly, after a really quick download from me in the most polite manner I could manage they ask for Ariella’s NHS number and it’s all rectified in seconds. Medicine in hand, job done, tick. Manic laughing and a glass of wine. What could possible go wrong next?

Oh that’s right, then there is also the seizure activity. Fingers crossed for a quiet weekend!

Being Mum Lifestyle Parenting Weekly Update

Intolerance

Posted on 8th August 2018

Out for a picnic and a trip to the park, we needed some lunch and I knew Ariella would find shopping difficult. I try to only go on nursery days but sometimes life doesn’t quite work out that way, we whipped around picking items off the shelf quickly, no time to browse – not quite as easy now that neither of us can eat gluten. Quickly tossing some strawberries into her hands, “Here Ariella, you hold this and we will take it to the till”. Task initiated.

Then begins the repetitive requests from Ariella…

“Ariella, door, door, till, door, door, DOOR, scream, DOOR, scream, -insert random phrase that she likes to repeat when overwhelmed- “.

My reassurances trying to calm her failing I quickly gave the coveted strawberries to the lady on the till and back again to Ariella. Onto the next stop on the train tracks in her mind.

“Door, eat, Ariella eat, eat, open door, NOOO, Nooo, door, Door, EAT, door, *scream*”

I pay, swiftly roll my double pram out the doors parking up outside and wrestle all the food into the pram. Sebastians sat quietly chewing on his fist, smiling up like business as usual. Yes business as usual, just as I’m about to sigh with relief that the shopping is over with a hunched middle aged man walks slowly out of the shop and says…

“She’s a delight”

But not in a good way, in that sarcastic voice that people reserve to cause offence. I turn around, wondering if I heard correctly? “Pardon?” looking him in the eye. He repeats again “I said, she’s a delight isn’t she!”.

I don’t reply, quite shocked – my first proper complaint against her lack of ability to comply. His wife says “come on, lets go” and off they wonder together, slowly. We head off to the park where Ariella has a fantastic day in the park out in the sun and for the first time she plays away from me with distance while I play with Sebastian sat on a park bench.

Screaming

I have so much empathy for parents of children who scream, whether that be a rare one off occasional or a daily, hourly, minute by minute event. It’s really frustrating to hear, it’s shocking, it’s abrupt, it sets you on edge.

Never take for granted the freedom of watching what you like on television without your child screaming between each and every transition, being able to drive your car in whatever direction you like to whichever destination you like, spontaneously visiting a shop to buy something, browsing – oh you lucky devils, buying a coffee, stopping to speak to anyone in the street, speaking to your neighbours outside, playing with toys that make sounds, singing to yourself, going to a music festival, waiting for anything at all! I know when you are out and about, going about your day the last thing you want to hear and witness is a child having a meltdown, I say meltdown because I don’t believe the majority of children with additional needs are having constant tantrums. I know certainly there are a lot of sensory concerns playing their part and a absolutely -need- for the child to respond with a scream, sometimes Ariella will try very hard to hold the scream in.

I don’t want to be screamed at all day, I know it doesn’t sound nice but we can’t stop our children from doing it because they either feel they need to or because understanding and developing takes longer and requires more repetition which comes from more exposure and experience than a neuro typical child. As a society we need to learn tolerance and we need to learn to be more patient, with everyone!

I’ve noticed that as Ariella grows older the tolerance from society appears to becoming weaker, when she walks around she often stumbles sideways and will correct herself or she walks into people. I see less smiles now and more frowns, which is such a shame but we do not like being restricted in speed and pace how often do we want to pass or hurry up a learner driving a car? Easily forgetting that we once sat where they do, learning to drive and that everyone must start somewhere. Never forget that you take your own independence and ability for granted, a simple change in circumstances could shift your world.

For the first time this week a member of the public reported our use of a disabled bay – quite wrongly too not that it matters as we do indeed have a blue badge. I had noticed a lady staring over and wondered if she was going to speak up but she decided to take her complaint to the reception of a local gym I was attending. I’m sure if the new changes to the blue badge scheme do come in, then this will happen a lot more for those with hidden disabilities, society assumes disability based on appearances. Yet if you look closely you can see the differences in gait, only because Ariella is a child the lady probably just made assumptions. I kindly told the security staff that the bay was being used correctly, there were no problems. But it left a sour taste that one lady could look and complain based on assumptions, I hope she was told that she had made an error and can learn from her experience.

So what can you do to help?

If you see a child screaming or struggling and you need to interact always consider that the child might have additional needs. If you’d like to help in a positive way remember to:

Use clear simplified language;
Explain what you are about to do, using Makaton (sign, symbols and speech) or first, and next structured instructions;
Give the child extra time to respond to you;
Appreciate that the child may have sensory processing difficulties and may need to find somewhere to calm down; and
Remember that even neuro typical children struggle with their emotions and adjust your expectations.

“Do the best you can until you know better. Then when you know better, do better.”
― Maya Angelou

Being Mum Lifestyle Travel

Thirty

Posted on 13th June 2018

How do you celebrate the fact that you’ve existed for thirty laps around the Sun? Take all your friends to a remote location in Wales with their children seemed like the appropriate answer. Best to lure them with the smell of Champagne as a thank you arrival drink for making it off the beaten track late on a Friday evening post work. It’s lovely being a parent, most of the time but it’s even better when you can enjoy parenting while still celebrating with friends. That was what I was attempting to achieve and I think mostly it worked out well.

The majority of my friends now have their own children and when deciding on a plan for my 30th birthday celebrations I wanted to incorporate family as much as possible. Child friendly but still fun and luxurious was the vibe I was going for and I hope I hit the mark with it. In a surprise turn out both my children were well and healthy as we set off on our way to Wales, stopping over at my parents house to break up the journey. Stored in the back somewhere was my tower of Champagne glasses, a bag full of frozen canapés, two bags full of stuff for two children with our things crammed wherever they will fit, a double pram. This was pretty light packing, Sebastian was thankfully using his carrycot still and would be sleeping in that – I’ll be writing about the Bugaboo Donkey2 shortly it’s really impressed me. Ariella was going to be transitioning into a single bed with blow up Hippychick Dream Tubes, although she did fall out of bed once they worked very well for her and didn’t take up much space at all in the car.

The house we had rented for the weekend was screaming Hygge inside and out, from its several log burners, candle lit lanterns, books scattered around to its outside pizza oven, star-gazing wooden hot tub and it’s tree swings. On arriving I quickly assigned rooms before everyone else arrived and set to getting the buffet table sorted. Once both children were fed and asleep I could really appreciate the beauty of rural Wales up in the Brecon Beacons, the only sound to be heard was of sheep just outside. I really recommend visiting if you haven’t before, it’s absolutely wonderful. We were very lucky with the weather, the entire duration of the long weekend the Sun was shining on us and the clouds very clear which made for excellent star-gazing at night.

Half of the group the next day went gliding, which I’m told was fabulous and the other half turned part of the old cottage into a spa with our own personalised therapist. The weekend was full of good food, nice drinks and lovely cocktails – topped off by a private chef cooking a three course dinner the final evening.

I want to talk about a change in mentality since turning thirty. Three weeks have passed since my birthday weekend and I’ve pondered on many things, how could I have used up thirty years already for one. But also reflecting on where I am now, parenting and the everyday stresses that surround it alongside the additional stresses of the last few months, of coeliac disease, global developmental delay and epilepsy. The screaming has returned a little the last couple of weeks and on top of this Ariella is going through the typical twos, she wants to be doing one thing but time demands we do another. The social communication delay makes it at times difficult for both of us to understand each other. It occurred to me last week while becoming frustrated with the constant screaming (we have building work going on at the moment which means lots of noises) that I’m fortunate to not have somewhere crucial to be on a day-to-day basis yet; I’m always trying to rush Ariella along, getting ready to go out the house, getting down the garden steps to the car, in the car, to the final destination once we’ve driven. I was sat in the nursery car park watching all the parents in the morning drop off their children, rushing to get to work when it dawned on me that I don’t need to rush and what would actually happen if we just slowed down to Ariella’s pace.

There are few things that are critical, hospital appointments yet but everything else is just a nicety. If Ariella doesn’t mobilise herself because she’s focusing on something else, or stops in the middle of the path to look at a stick then it’s less stressful for all of us if I just let her get on with it. She is lucky that we can do that, why not take advantage of it. When you are being screamed at daily, for long durations is easy to lose sight of the light at the end of the tunnel but the bigger picture is there. We have two beautiful children, a wonderful home, two fluffy cats (even if one of them does like to have a wee on a tea towel) and time. We have all the time in the world, I appreciated the time my own mother gave to me as a child, forgoing work to stay at home. A true luxury these days to be able to do so, to be able to take Ariella to all her therapy sessions, her hospital appointments and ultimately watch her and her brother grow.

I also have decided that from now on I am going to invest into others what is invested in me, embrace shorter hair and try to appreciate every single day without worrying about what is around the corner.

Being Mum Parenting Weekly Update

A challenging start to the year

Posted on 1st April 2018

On returning home from the hospital with our new bundle, eager to show him off to his big sister who had been left for the first time ever overnight without either of us we had hoped for a much more exciting reception than what fate had planned for us. You would think having a complex pregnancy, major surgery, a toddler with limited mobility plus a newborn baby might well be enough to comprehend for one family. You would be wrong!

I walked in to greet everyone, took one look at Ariella and I could tell she was not feeling well at all. She had over the last few months been picking up illness after illness, becoming very withdrawn and screaming much more than ever before. The following two weeks were no fun at all, every night we would wake her up to change her sheets which were soiled, as time went on she became more and more distressed at this time. We took her to the GP thinking she must have a stomach bug or virus, it went on for two and a half weeks before her little legs and feet started to swell. I knew that day something was really wrong as Ariella had become very quiet, very sleepy and was vomiting all her food. She went days without having any wet nappies, she even went into the children ward briefly for suspected dehydration but was discharged quickly. That night I was putting her to bed and noticed how unbelievable skeletal her little frame had become, every rib was visible, she looked anorexic and her legs felt puffy to me. The next day I phoned the doctor surgery and explained things were getting worse rather than better Ariella was given an appointment for later in the afternoon. When I tried to put her shoes on to leave they wouldn’t fit on and I knew something was very off indeed, ditching the shoes we headed out the door three weeks post surgery with both children (one strapped to my chest in a sling and the other too weak to move nestled in the side of my arm). I sat with her in the surgery waiting room feeling like we should be in hospital and very much out of my depth, her breathing was very shallow and fast and she was very floppy. This was not how I imagined the first day flying solo to be, J had gone back to work that same day.

After a throughout exam by a doctor Ariella was sent onto the children ward and didn’t get discharged for seven long days, I was at home with her three-week old brother while her dad stayed by her side. Those seven days felt incredibly extended and during that time Sebastian had changed so much, I wasn’t able to take him into the hospital as he was too small to be on a ward full of very unwell children. The hospital ran a variety of tests from ultrasounds to bloods, tubes to remove air from her stomach as it was incredibility distended. After several attempts to get a cannula in, every single option of a vein had been attempted she was given fluids but we still did not know what was causing her to be so lethargic and swollen. It’s amazing how much time ticks by while you are in hospital, or waiting for tests, waiting for someone to come back with the rest results, waiting to find out if you can go home, waiting for the food trolley. Whereas at home you have a lot of distractions to keep you busy, is no wonder really that patients and their carers become so impatient with such lack of control about their day and frankly future. It feels like having a tiny piece of the path ahead alight for you, but really you want to know where it’s going so you can plan ahead and prepare yourself.

With the results of the tests and a worrying ultrasound showing a bowel issue (that resolved itself but created the need to be transferred up to a London hospital and be prepped for surgery) it was finally agreed that Ariella had “probable” coeliac disease. She started a gluten-free diet in hospital and when she was finally discharged she already seemed much better. It took several weeks for her obsession with food to slowly fade, yet I suppose for several months she would have felt like she was starving it’s no surprise she has become so aware of meal times and snacking. Weeks on her mood is greatly improved, she isn’t screaming at me every few seconds anymore, she’s actually smiling again, her hair although it fell out at first seems to be growing faster, she looks less pale, she’s more able to move around and in general her mobility is progressing again. It’s had a profound impact on us as a family as living with Ariella in her new state is a lot easier, she’s more patient, she’s engaged whereas previously would sit all day in a zombie like state playing with no toys but instead screaming or crying. You might wonder why we didn’t realise sooner, we did but there was always an explanation for the various issues raised. Her stomach was distended, not unreasonable given her weak core. It was only when she began losing weight that I started to feel perhaps Ariella was being misdiagnosed. Even the vomiting with eating and after could be explained by a sensory oral issue or sickness.

We are so grateful that it’s something we can treat and will hopefully enable her to move forward where we’ve been stagnate for a year. I know it won’t be a magic cure for Ariella and that she has struggled long before she ever ate gluten but I hope that it can put her back in the place she was before her second birthday. I hope that it means that she can begin now to live more, be happy and confident and frankly we can go outside more. Once Ariella was diagnosed we decided to become a gluten-free household and I’m very glad we did. When she came home I had hauled all the gluten out of the kitchen and had signed up to CoeliacUK, had gluten-free recipe books on order as per the dieticians advice. There is really great recipe book for children called The Gluten Free Cookbook for Kids which I have now tried quite a few of the recipes from with great success. I suspect I may also have Coeliac Disease as my blood test results came back just the same, so it’s good that we all are living healthier all round. I wanted to make sure that Ariella can pick anything from the kitchen without worry and that it felt inclusive for her. It really hasn’t been too difficult to change our diet as I always cooked recipes from scratch and never really relied on pre-made sauces, the only major change has been that we don’t eat out at often and have less takeaway’s now. Which has been great for my waistline!

Comparison pre and post gluten removal

In the last month and a half while learning we have accidentally given gluten to Ariella twice and the effect are very obvious so I feel quite certain about her CD diagnosis. Right now though I am just pleased that our lives are a little more quiet with a little less screaming, I’ll take that.

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Being Mum Lifestyle Parenting

One of those days

Posted on 9th January 2017

Today has been one of those tragic days in which you really wonder if someone is coordinating your fate from a high. The day started with a fever, mine. I knew I wasn’t feeling well when I was shivering in bed wondering what on earth could have caused the room to turn to frost in the night. Ariella woke and starting calling “up” on the monitor, I said “Maybe she is cold”. Mistakenly assuming that everyone was shivering like me. I asked Jamie to get me the thermometer so I could check my temperature, I never have one. I’m a steady 36.5 c, always!

It beeped red at me, it’s was too early to see that kind of number on a screen. Jamie was going back to work today so I didn’t have time to be unwell. I got up, which was a bad idea – I immediately started shivering and went to get a throw from the basket wrapping myself up sitting at the dining table while Ariella ate her breakfast. Today was important too, I had another thyroid scan today to attend. I haven’t spoken about it on here I don’t believe. Anyway I had a scan six months ago as my thyroid was sore today was my second scan to check the nodules they found haven’t grown. One of them had grown, boo! Biopsy planned now, but hopefully nothing sinister as I frankly don’t have time for it anymore.

On to Ariella, on Sunday we noticed she was walking strangely. Normally she does have a bit of a tilt to her ankles but both feet tend to be quite straight toes facing forward. Sunday we noticed she was dragging one leg and foot sideways so that the toe was facing outwards. Out toeing I think, but also with the dramatic change over night we were concerned. I emailed her physiotherapist but thought best to take her to the doctor too. I wanted to rule out any acute injury that was unrelated to her conditions, although she didn’t seem in any pain at all and there was no swelling. Still it’s a worry to see and she won’t walk on it far, I hope it doesn’t hinder her progress as she was making such great steps.

The doctor seemed bemused, luckily as we have a direct contact with Ariella’s physiotherapist I was told to contact them to make an urgent appointment which I will do tomorrow. But else we will have to go to the hospitals pediatrics department, not a stress we need!

That concludes our day, time to adjust the sail.

Being Mum Featured Lifestyle Parenting Travel Weekly Update

Twenty Months – “Walking in a winter wonderland…”

Posted on 13th December 2016

Twenty months old, twenty. I guess we stop counting in months soon? Maybe when they reach two? To say they are only one for such a long time in which so much changes, seems silly so I understand why things still count in months. I guess if I was looking at clothes, they all seem to stop counting in months at two. Two it is then.

Sleigh Bells Ringing, Just hear those sleigh bells
ringing and jing ting tingaling too
Come on its lovely weather for
a sleigh ride together with you – Neil Diamond

We put the Christmas tree up this week, I wasn’t going to I know but looking at it every day sat out in the cold looking sorry for itself all wrapped up. Everyone else seemed to be putting their’s up and it only has to survive a couple of days without me topping up the water. Worst case scenario? The husband has to take it outside and saw an inch or two off the bottom again. Because I’m not doing it, having done it by myself while I was feeling all high and mighty during the start of the week I’ve decided that using a saw while simple involves quite a lot of physical effort and it’s definitely not for me! I did it though and I dragged it’s sorry self all the way up into the living room. Put it in it’s stand, unwrapped it, threaded all the lights myself and then decorated it. Where was little Ariella during this? She was napping, pretty good use of time in my view. My back does not agree but that’s an ongoing debate between me and it.

Taking a little rest while admiring the various hours of hard work

If you don’t have a Christmas tree stand for your real tree yet I really do recommend you spend a little more than you might normally and buy a Krinner. You can put the tree up by yourself as it has a little foot pedal and a great big water storage area.

In other news, we’ve ditched the bottle (hooray)! Ariella has slept through the whole night for quite a while but when we tried to remove the bed time bottle she was waking up in the middle of the night for milk. She definitely wasn’t waking due to hunger at this age and she didn’t really want the milk after all she wouldn’t drink it in a beaker cup. We decided to just go cold turkey, we explained to her that she was a big girl now and big girls don’t drink milk in a bottle. The first night was predictably dramatic, she had full blown tantrums, threw her arms around, threw her head back, screamed, cried, could not be comforted. We kept going in to reassure her and eventually she wore herself out when her efforts did not bring us running to her room with bottle in hand.

The second night, it was like a switch had flicked and she no longer woke for milk. Just a little whimper then soothed herself back to sleep. Third night in she didn’t wake at all, I did go have to go in and put the blankets over her again as she really loves to move around at night. But other than that she was totally asleep, I had no idea we would only be in for one night of tantrums. It feels really too good to be true!

We had our first hydrotherapy session on Wednesday and I had no idea what to expect, although Ariella did attend swimming lessons for many months I had never taken her myself. I also wasn’t sure exactly how hydrotherapy would be different to normal swimming, but from what I can tell the pool is warmer but so far most of the swimming exercises are on par with the likes of Waterbabies. Naturally the amount of children attending is a much smaller group, just three but this gave the two therapists plenty of one to one time to help out with the exercises. Ariella really enjoyed herself and spent most of the time laughing, It reminded me to book up some regular swim classes again as she really does enjoy the water (we stopped when we moved). One big difference as I said was the temperature which is comparable to being in a hot tub, so rather warm! Ariella has never liked a cold pool so this was perfect for her, for me I can’t say It bothered me too much but I do tend to have quite a good tolerance for warm water.

At our last physiotherapist session Ariella was given some orthopaedic footwear (Piedro) to aid her recently diagnosed hyper mobility, hyper mobility is in basic terms over flexible joints. We decided this week to put them on her routinely, so she now wears them from waking until bed time and this has really improved her walking hugely. I’ll definitely be looking at the Piedro brand for her next pair of shoes, they also do sandals so I’ll look to add those to our holiday list. The pricing of the footwear is greatly inflated but the extra support really helps gain confidence in the basic structure of the foot. Even when we take the boots off now she seems much more stable, so I’m sure the specifically designed footwear is having a large impact.

This week has been a real run up to festivities for us, we had plans to attend a glitzy red carpet affair on the weekend and then continued that with a long weekend spa break. Both were exceptionally well timed, fun, relaxing and I think Ariella enjoyed spending a few days with her grandparents who offered up their babysitting service for the red carpet affair before heading into the Cotswolds. We greeted them at the door with a vomit soaked toddler, vomit covered mum and the external pieces of the car seat in hand. Everything was sponged down or washed, just in time for her second go hours later at which point we decided she was either car sick or unwell. As days past it was clear she had some kind of vomit bug given the car seat was covered once more (and currently sitting in the washing machine for a good deep clean).

Red carpet evening, child free!

Next in line was Calcot Manor & Spa in the Cotswolds, one of our favourite places to relax. They have an onsite creche which you can use included in the room rate when staying in the family rooms alongside the baby listening services. The Creche is such good fun, the staff are always very reassuring and all lovely. As well as this they have the most awesome spa with a blissful outdoor hot tub and top of the line treatments. We used to visit often before children and it’s remained consistently excellent throughout the years with a unique balance between catering for the couple market and also families. This is such difficult line to walk on! The food is top quality, the spa excellent, the family rooms lack nothing – they are as comfortable and accommodating as our own home. Perfect!

On this occasion we decided to go for a family suite as Ariella tends to get disturbed now when we come in and out of rooms. It’s not always an option but she did sleep a full 12 hours as normal here, the rooms are beautiful whether you have older children or younger. They are accommodated with tv’s, games, books and also the younger children have all the extras you might usually need to bring (steriliser, washing up liquid, nappy bin).

The first evening we dine with Ariella at the children’s high tea then once she was asleep enjoyed some superb cocktails in the beautiful decorated lounge area with some of our close friends, with roaring fires and Christmas trees scattered throughout it was very relaxing. Just what we needed to unwind and prepare for the rest of our stay (as well as the treatments had scheduled at the spa). The following day we made use of the creche, dropped Ariella off and headed to the spa where we enjoyed spectacular massages – I opted for my usual hot stone but a much longer duration this time. We managed to change or creche booking to a little earlier so that we could enjoy the spa and the hot tub before our treatments, as we weren’t sure if we wanted to take Ariella swimming. The swimming times for children is quite a narrow window but as it turned out, Ariella wasn’t feeling very well anyway.

Yummy lunch in the conservatory restaurant

The following evening we had a baby sitter booked in, the creche at Calcot offer baby sitting in the evenings which is really a treat. So that left us free to dine with more friends in the fine dining Conservatory, exceptional food and wine is on offer. It was so great to have a huge amount of time to ourselves, child free and I feel very much ready for Christmas now!

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