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Being Mum Lifestyle Parenting Seasons Special Needs Summer Weekly Update

Summer of fun

If I level with you, before this Summer I can’t recall the last “school” holiday that we made it through without some physical representation of frustration. Whether that be bites, scratches or bruises from items thrown the holidays were out of routine and they were fundamentally a stressful period for everyone. I had noticed that some of the happiest times we were when would go on holiday together, with friends, family the more adults the better.

Prior to the Summer I attended an autism workshop for parents which was most helpful and compounded some of the ideas that I had already read about, one of the key elements for me was confirmation in my analytical mind. I spend a lot of time trying to decipher behaviour to make up for the lack of communication between us and A. The more you look the more you begin to see patterns, usually challenging behaviour has a cause whether that’s one that can be rectified or not is another matter. One of the big flags for me always behaviour would decline when there was only one adult and A had to share attention. Probably not that unsurprising for many children and a trait I’m hoping over time will improve but alas here we are.

Finally admitting that nothing else we were putting in place was making a difference to the holiday periods we decided to employ a nanny. What a difference, affirmation of what I had suspected all along. The difference is so apparent that I now have a changed child, one who is enjoying her childhood in the most part and is happy. Once where holidays were times in which we couldn’t go outside because as soon as A had access to any other children she would hit and push them down, refuse the go outside but finally with just increasing that adult 1:1 ratio those behaviours have reduced. Where we might have had a meltdown seven times a day now it may be once a week or less. Unbelievable, right?

Like a child in a candy store after a few days inside while everyone got to grips with each other I planned to go out most days and filled our Summer schedule completely. So with that, this is what we got up to this Summer!

West Wittering – Over the Summer we visited the beach, a few times which is always a calm place. Both children are always very happy when they are near the ocean. S is at that age in which he is exploring all the senses, I’ll be quite pleased when we pass the eating sand phase however!
West Wittering Beach – A love of Kites was ignited watching one fly, following this we bought our own butterfly kite.
Alice Holt – Alice Holt have renovated some of their playground
Holloway Hill Park, Surrey – Many days were spent at various different parks, where before we might spend half an hour max with the new setup we could spend hours outside.
Woking Park – I really don’t know how we missed this one up until now, what a glorious park. Mostly wooden, lots of landscaping to give interest. It’s a very pretty space and has some excellent water play.
Woking Park
Woking Park
Magnetic Tiles – I’ve had these in my Amazon basket for as long as I can remember after seeing them on Fridabemighty, brilliant for hyper mobile hands.
Ariella had her first bowling experience over the Summer, despite the loud environment she really enjoyed herself. Fingers in ears a lot!
On a rainy weekend we took a trip to a beautiful toy shop
An epic crafting session, lots of paints, lots of crafting, lots of children.
Bird World – Sebastian went on a trip to Bird World
We took a trip down to Brighton’s aquarium, I think I prefer London but it was less busy and we visited a local gluten free fish and chip place for lunch called the Wolfies of Hove. Yum yum!
A new section in the aquarium. If we had one of those at home I think Ariella would never leave it. It projects the rolling waves of the ocean on the ground. Amazing.
Cotswolds Glamping – The children loved it, me less so. But it was an experience!
The last day of Holiday – Feeding the ducks

Phew, if you made it down here congratulations. We also visited Marwell Zoo, had plenty of hospital appointments, assessments, therapy, soft play and parks. All in the very last day of the holidays I was sad that our long, slow days were drawing to an end. It was refreshing to leave drop off and pick up behind, to work to our own rhythm and learn through play. Goodbye Summer, hello Autumn – next to plan half term!

Being Mum Featured Lifestyle Parenting Special Needs

Not going to school

I picture this little blonde haired girl, hiding under a teepee playing with her teddy bears. She’s having a tea party and Mr Bear has taken all of the cake leaving not even a crumble for everyone else. Every item in your room has been given a different purpose far from the obvious and your imagination is rife in a way that most adults forget to be.

One day you come dancing into the room sheer joy on your face, round and round on tips toes like I did in the background of the kitchen growing up while my mother cooked. Always moving, elegantly from place to place and without any purposeful thought.

In September you’ll put your school uniform on and walk alongside your friends, excited and worried in equal measure about your new adventure. I would be so surprised how quickly you’ve grown, how fast time has gone. I’d wave alongside the other mothers at the gate knowing you were moving on to a new chapter with your peers, making friends and living life.

The girl above lives only in my mind, I think I created her long before I ever had children and she is full of preconceived ideas about parenting and how my children might be. I think mostly she is made of my own experiences reflected back perhaps manufactured during my childhood while pretending to play families as a child. You don’t exist, so let’s move forward.

School, when you fall out of sync

“True happiness is to enjoy the present, without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied with what we have, which is sufficient, for he that is so wants nothing. The greatest blessings of mankind are within us and within our reach. A wise man is content with his lot, whatever it may be, without wishing for what he has not.” 
― Seneca

As we currently have a legal appeal ongoing I can’t discuss the schooling situation in specific detail, but what I can say is that we are truly out of sync. Not just with the mainstream but even the specialist, Ariella is back at nursery for now but her future remains unclear from January. It is not a process that I take kindly to, we were given mere weeks of warning at the end of term in July sitting until that point with uncertainty. I think to apply even more uncertainty to the life and families of children who live with the ultimate uncertainty of an unknown condition is “not good” (as Ariella would say). It’s taken a while for me to accept that perhaps we care the most about Ariella’s future and that perhaps others care a lot less than I might expect them to – a sad state of our educational system. I am thankful for all the practice that Ariella has given me to be able to sit in the unknown and accept we are here, that there is nothing we can do to change it and to make the very best of whatever situation befalls you.

School is one of the most asked questions that I get asked right now, my hopes for Ariella are that she is happy and given access to school which does not limit her or dull her personality. She is creative and interesting, over the Summer holiday period which were much improved to previous holidays (which I will talk more about in a separate post) she learnt to count to 100. It took her mere days to do this and I know that is unusual, all we are really asking is for Ariella to attend a school in which she can explore on her strengths and is not limited by the school curriculum. Art, music and numbers all being things she really has a keen interest in but in an environment which is suitable for her and understands autism. I believe I have found a school that would facilitate this in Sept 2020 but it unfortunately is not quite that simple.

It was a difficult week seeing all Ariella’s peers start at school, I was very happy for the children moving onto their next stage in life. It does feel a little like ground hog day! It sits alongside watching others hold their heads first, learn to sit, learn to walk, learn to speak. School feels like one of those large milestones for childhood. Another aspect to consider for children who attend specialist settings there isn’t the same playground pickup/drop off vibe. Most of the children are transported in, their parents don’t get to see the school on a day to day basis or say hello to other parents. I think this alone puts you at a disadvantage, I know in my mind part of being a parent is standing out in the rain, sun, wind or snow waiting for your child to come out – bag, jumper thrown over the shoulder.

For now we have the Autumn term as our “fixed plan”, Ariella has a confirmed future for the moment up until Christmas and our court hearing is in October. We will make the most of it and hope that things can continue to be a settled and calm for Ariella’s possible in 2020.

Featured Lifestyle Weekly Update

Autistic Spectrum Disorder and you

A day before Ariella’s fourth birthday and one day after Autism awareness week has ended Ariella was diagnosed with Autistic Spectrum Disorder (ASD). We assumed that it was likely to be the case but knowing it is very definitive and I feel very at peace today. Up until now I have tried my best to describe the behaviours, the difference in the way A thinks and communicates without having the right words. I would often say “I think she’s autistic” or use all the descriptive phrases but what we really lacked was the support to know what is coming ahead. It probably sounds crazy but we are facing an unknown genetic condition, unknown prospects, we’ve never been sure at all that any of her blood tests, any of her immune reactions can be taken for certainty. When you are dealing with a rare condition that has no name, it’s impossible to look at the average. ASD is so well documented, I’m relieved to be able to put a name to the way that she behaves, the manner in which she “socialises” and communicates. The rigidity that ripples reaching far beyond just A and spills over into all of our lives. It’s reassuring to be able to justify the way we have to adapt finally, we have to adjust our expectations to new ways of thinking and that can seem rather overwhelming. But knowing why really helps put to bed any doubt in the methods – not that there were many.

On Sunday we took both children to Marwell Zoo as a birthday treat, once we had explained this to A she was keen to have birthday cake and candles. She walked her way into the Zoo with one aim, find cake, find candles. I tried to explain that we were here also to see the animals which was met by “No animals” repetitively. It’s not the first time we’ve taken her somewhere and immediately wondered if we have made the right choice, we’ve really not utilised a lot of attraction tickets over the years. When we visited Canada I think we probably did the quickest tour of Niagara Falls ever. We did after some time accept that we would need to find some cake, which we did. First we had ice cream, A has taken to moving her evening ice cream to pre food, so a starter rather than a dessert which is a direct result of me using it to keep her occupied while I cook in the evenings. After this she began asking for her lunch, which we knew would probably happen, we managed to take her to a playground briefly until the requests for lunch became frustrating and decided to take her for lunch instead.

It was after all her birthday treat and the aim was to keep her happy, while also giving Sebastian some time around to Zoo. Straight after finishing her meal she wanted to get up and go home. Which was rather predictable, again – we managed to add in a couple of visits around a few of the animals briefly and a small trip to another park. All in very predictable and we knew she would want to go home, but we still try because I think it’s really important that while she might be able to stand right next to a Rhinoceros and not even glance or acknowledge it meanwhile a black and white wheel is the most fascinating thing ever. Until we try we won’t know and neither does she, so try we must – always.

Being Mum Featured Parenting Special Needs

Managing challenging behaviour

Challenging behaviour is behaviour that causes problems for people around the person

No Fighting, No Biting, No Screaming – Bo Hejlskov Elvén

Probably not unfamiliar for families of children with or without additional needs, in fact Sebastian occasionally shows frustration by throwing his toys around the room. Challenging behaviour for us has manifested in many ways, while we can use many of the usual techniques with S so far very few of the standard methods (distraction, calm redirection, talking it through) really work for A.

Where to begin?

Emotional Intelligence

Right now our current method involves using two cards, one with a red block of colour and a sad face and another card with a green block of colour with a happy face. You can read about working on emotional intelligence here.

What we are looking to achieve is firstly understanding of feelings that one behaviour causes another to feel sad and secondly the start of self regulation. Can we get A to stop and think about her actions and how they impact someone else.

This method has been incorporated reasonable well, A seems to understand one thing can make her or someone else feel red or green, we never modelled the cards as ourselves but she has taken the abstract thought and applied it to us rather than just her behaviour. For example If S is feeling sad she might say “S is red” and this has allowed us to further enhance with other words, S is sad, S is feeling angry, S is feeling happy.

It’s very simple but has allowed us to cross a barrier in communication, due to A’s incredible visual memory she took to the cards within a day which is much quicker than we or nursery had planned.

At first it was treated like a game and I wondered if we had made a mistake, she wanted to see the cards all the time but slowly the novelty has worn off and we are even adding a “I can calm myself down” card too.

Working together – School, nursery and at home

Both us and nursery are using the same technique, which is incredibly important to enable children to generalise. It hasn’t stopped all of the challenging behaviour but it’s a start to understanding and learning, which I think applied in the right way – visually and logically A quickly can apply to social situations.

One of our biggest barriers is cognitive rigidity, that is simple that once you know this is the way we do things it’s hard if you have cognitive rigidity to then change that way up. Having worked in Information Tech I know how reluctant the general population are to move away from what is comfortable, the know is easier and fosters a resistant to change, this was one of the biggest considerations when changing any system.

The known is safe, expected and thus anxiety is kept to a minimum in A’s case. So I thought about it and what would I do in a business context to navigate change? Well I would normally talk to a person and explain what I’d like to happen, what I’m expecting of them and how discuss through any concerns or questions they have.

When it comes to children with complex social communication challenges that is not something that is easy or even really possible to do always. The red and the green card along side a visual timeline of events allows us to try and navigate that in a way that can be understood, reducing anxiety, reducing surprises and hopefully reducing challenging behaviour longer term by giving A the tools she needs to start paving down expectations.

Changing your outlook – Why?

People who can behave, will.

Bo Hejlskov Elvén

Let me take you back to a situation that arose a few weeks ago, we had a hospital visit planned which would wipe of the whole days schedule for A. Taking both children to the hospital anyway is quite an event, A really doesn’t like hospital much anyway – who does! Although things have improved a lot (with the help of visuals and staff understanding her needs).

The day before I tried to prepare A that she would not be going to nursery that day, that morning I arranged her visual timeline to show that we would be going to hospital, I explained again that she would not see her 1:1 today.

All was going reasonably well and just as we were about to leave, our new cleaners arrived – I had intended to leave to avoid this as I knew seeing new people would be a risk. A coped reasonably well and other than yelling “HELLLOOOOOO” and “BYE, BYE” on a loop (she was waiting for them to say bye back in the way she likes) we headed out the door without any stress.

The morning other than a few surprises was going reasonably well, certainly better than I had anticipated. At the hospital we managed to park nearby, which was again great, part of the challenge can often be waiting in the car while I try to find somewhere to park which I can lift A out of the car.

Dealing with the unexpected

We arrived into outpatients and I went to check A in for her appointment. No appointment in the system, at about this point I realised something was not quite right but meanwhile A wandered off down to play with the toys, this being a very well known outpatients for her she initiated her usual routine. I spoke with a member of staff who kindly told me that the appointment had been rearranged until the following week.

I explained that we were not seeing the doctor and in fact we were going back home, A took it better than I expected. I suppose in hindsight she probably wasn’t too keen to see a doctor anyway, but I had a problem. I couldn’t just go home because I had expected our clean to be done while we were out that day, A really dislikes vacuum cleaners.

It was raining and I thought while driving, I’d brave going to a supermarket. This was the very worst choice I could have made, it turned out that A was not over the fact that she did not get to see the doctor. I offered her ice cream to go inside but she thought we were getting ice cream from a very specific store locally which sell the ice cream in a tub with a flake on top. To her great displeasure upon reaching the back of the store, which she had repeatedly said ice cream over and over to get to it was not the kind she wanted and she became distressed.

Staying calm

Remaining as calm as I could possibly manage I told A that we would need to go home if she wanted a different kind of ice cream, it was at this point that she said “Next is doctor”. I realised she had something very different going on in her mind than that I had, she had not let go of the fact that she was expecting to go to the hospital and instead we had a delayed reaction.

After this point while trying to get her to leave she had a very public melt down, which involved biting, hitting me in the face, kicking and hitting S. All while S is throwing his snack everywhere in the pram yelling in distress, I felt very sorry for A because in her mind she was going to the hospital, she had spent that morning worrying about going to the hospital only to get all the way to the hospital and not go.

This alongside the fact that she also wasn’t attending nursery that day due to the hospital appointment it tipped her over into chaos. It was that day that I decided we definitely need an extra pair of hands!

Reflection – How could I have managed this better?

In hindsight I should never have taken her into a supermarket, which to date we very rarely go into with A unless I am in desperate need. I should have realised that she would eventually need to vent her frustration at the change in routine and ultimately I needed to manage and adjust my expectations to enable A to achieve success that day.

There is always a trigger and a reason for a meltdown and I have found it much easier to divert before we tip over the edge to avoid a meltdown than managing the cleanup situation afterwards. I see similar tantrums with S but he is much easier to distract and he is able to communicate his desires so it’s easier to avoid, also he does not have the same limitations in his environment and is not as triggered by sound, touch/texture, social interactions and routine. It means it’s less frequent and less restricting overall.

Methods? So what do I do?

I’ve had to really change up the way that I look at parenting with A, no matter how many times I say “use gentle hands” and yet, we still have very non gentle hands. Ditch out all the things traditionally we are taught from my own upbringing.

My parents would probably have used persuasion or bribes for example “If you hit you won’t get X” or “Don’t hit, nice people don’t hit” neither of these work on A and I would encourage you instead to look at why they are doing it. What is triggering that challenging behaviour, what are they getting from it? What are they trying to communicate?

Simple techniques to avoid tipping over

I have learnt that there is a very small window of opportunity before the behaviour switches over into aggression and a fight or flight response emerges, just before this I try:

  • Talking calmly to understand what is causing the challenging behaviour
  • Use the red and green visual cards discussed above to communicate that the behaviour is not appropriate, offering a chance to learn
  • Lowering down to A’s level and making sure I am to her side rather than directly in front of her, if she takes a step back I try and distance myself also
  • Avoid too much eye contact while still appearing interested
  • Using simple phrases and makaton
  • If I need to touch A I will limit this to the shoulder area
  • If it is obvious to me I will try to stop whatever is triggering the behaviour or guide A out of the situation
  • If we are at home A’s bedroom has lots of sensory calming lights which really help, but this is not always practical.
  • Compromising, A really loves ice cream and if all else fails I will compromise with something to transition. Before researching and reading this is one of the things I was reluctant to do in case it increased the challenging behaviour for reward, if you are concerned about this I encourage you to read the book I’ve listed below.

When all else fails..

If the above do not work then it is a matter of damage limitation, making everyone safe

For me always there is a reason, whether it be lack of structure, changing in routine, poor sleep, pain, difficulties in understanding cause and effect, mental overload, sensory input (sound, touch, vision), too many or too little demands in life, relationship conflicts (siblings, parents, friends) or just an effect of the mood of others around A.

When we first started this journey and I was asked “Are there any warning signs” I said no, but now I can see that there are many warning signs indeed. I think these are unique to the individual and I’ve found it very helpful to read around the subject.

Expanding your knowledge base

For more in-depth reading I can recommend “No fighting, no biting, no screaming” by Bo Hejlskov Elvén.

It’s a work in progress for us, challenging behaviour continues to be a real challenge but I feel equipped with the tools and understanding, which on the days when we are on our sixth meltdown and I’ve been bitten several times and with more unsuccessful attempts than I can count. I can reflect and know why it happened, learn and try to adjust for tomorrow.

Being Mum Parenting Weekly Update

MRI #2

What day is it? I am sorry if you are reading this and you are one of the many friends I’ve forgotten to reply to. It has been like groundhog day here, Ariella is now attending nursery school every weekday but only for limited hours. The adjustment for her has been a challenge, the adjustment for me even more so.

It’s been a struggle losing my 1:1 time with Sebastian, having two days a week in which I can spend catching up with all the chores. From simply keeping on top of the pharmacy trips, multiple medicines all organised at different refresh times, to making sure we have food to eat, clothes to wear, feeding the cats, keeping the house generally just moving forward. When you have what equates to a nap time free each day suddenly it feels like you are on the clock, I have certainly dropped a bunch of things and I am so thankful that we have some outside help to keep everything “clean”.

Scattered along the month are weeks where there are hospital visits, this week scheduled an MRI and a Gastro appointment. The MRI went really well, so much less dramatic than last time  – which you can read about here. This time a little bit of gas and she was fast asleep, no worrying about cannulation or MRI machines, no fire alarms going off above her, no vomiting, just sleep and actually peace. Of course it’s always a worry when your child is to undergo general anaesthesia but I enjoyed a really nice cup of coffee and we were happy she was in very safe hands. 

When she eventually came around she was sleepy but happy, in fact the most distress she felt was from forgoing her breakfast and the nurses observations afterwards. With each check her heart rate would spike until the nurse soon realised she needed to leave the room to get a normal reading. Seeing her little heart rate spike really made me appreciate how anxious hospitals make Ariella and that I should try and remember this whenever she is having a meltdown.

I have of course applied to have her results sent to me ASAP, I’m not one to wait for the next consultant appointment. Looking forward to getting those through, I would hate to attend the appointment and have it sprung on me should there be any significant changes. Fingers crossed that the results come back positive!

Really glad it is the weekend, time to relax a little and prepare for October which will bring more blood tests, a hearing test, a vision test, a new weekly speech and language group and of course Halloween! It’s also going to be time to start visiting specialist schools, which is quite a daunting prospect but I am looking forward to seeing how they can best support Ariella.

As ever, busy, busy, busy…

Being Mum Parenting Weekly Update

A change of mind

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, Mr Snotty

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.

Splashing in puddles

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???

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


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.


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
Always finding a muddy puddle
Being Mum Lifestyle Parenting

Beautiful six months

I wanted to talk about our little bright light Sebastian, he has spent the last six months being slightly under shadowed to his sister. With his first trip being to register his birth and his second back to hospital for his sister, in the months since frequenting the hospital as a main event. Despite this he is the most happy, wonderful little guy ever; he genuinely is a joy to be around and parent. He is the very easiest companion, fitting that he spends so much time in my sling so my hands can be free for his sister. This month he learnt to sit independently, cut his first tooth, say what I think sounds like “Mama” and started to wean his first foods. It’s been absolutely wonderful watching both children together, I remember being quite worried about expanding into a family of four and in the early weeks trying to imagine where he would fit in. Now I cannot imagine him not being part of our family and his sister has really flourished around him.

After realising that he doesn’t feature as much as I’d like on the blog, I wanted to share his last six months here with you in mostly photo’s that I love. Marking that behind the scenes there is a little guy that has been chugging away, developing and growing into a little person too.

June 2018 – Five Months

This photo isn’t the best photo I have but I love it, in June Sebastian was being rather social! We had lots of smiles, lots of laughter and practice at sitting although still very wobbly. Sebastian rolled for the first time too.

June’s hospital stay

May 2018 – Four Months

May hospital stay

April 2018 – Three Months

March 2018 – Two months

February 2018 – One Month

January/February Hospital

January 2018 – Zero Months

January 2018 – Zero Days Old, his own hospital stay


Being Mum Featured Parenting

Your tribe

Long before birth, while Ariella was still kicking away inside a little bump and I was ignorant of what awaited me; I prepared myself for what I thought that narrative would be with research. Books on parenting, blog posts, second-hand experience from other mothers who had babies that frankly seemed quite foreign to me.

Once she was here I thought I’d read emails on development, read about weaning and potty training, behaviour and beyond the terrible twos. But instead I was invested in medical journals, specialist groups, therapy books – I unregistered from the developmental emails and let go of any vision I had of the future to accept what appears in front of me. Children do not come with a manual but when things get rough or you hit a difficult spot usually you can find somewhere to reflect on the “phase” of life that you and your child are going through. Whether that be a blog, a social media group, a collection of friends with shared timelines like NCT – there is always somewhere you can go to ask for help. Is this normal? Did your child do this? Why is mine doing it? Will this stage end? How do I navigate around this? One way or another these people be it online or face to face become your tribe. Your backup for reflection when faced with challenge, these things do not correlate with a child who has no diagnosis.

We have specialist areas of tribes, we have epilepsy, we have the coeliac crowd, we even have global developmental delay. We have social media groups of children born the same month, we have the families and children we met on the way but the questions never quite line up because overall things are not the same because the overall picture is different. It doesn’t mean you don’t continue to try to bring advice and concepts in but they don’t always quite fit, for example I really admire the gentle parenting approach. I feel like had things been different this approach would be much more successful and harmonious, simple the general principles being respecting your child – not forcing their hand and giving them choice. Trying to be empathetic with your child, listening and modelling empathetic behaviours to encourage them to achieve them later in life. Giving choice and respecting the child’s opinions, giving them attention and accepting their limitations.

Now trying to apply this to the day-to-day for Ariella, every week we have appointments and today was no exception. Ariella dislikes certain textures, cold wet jelly on the skin certainly being one of them but today she had an echocardiogram. I explained in advance what would happen, that there might be sticky pads and there would definitely be cold jelly on her chest. That the doctors would be looking at her heart and we would be going to the hospital. But when it came to the procedure how do you approach that gently? I try as much as possible to offer choice but for her best interests she needed the procedure done, she did not want to be there and was restrained while screaming and crying. How do you approach this gently? Who do you ask, where is the tribe?

With Sebastian getting older deciding on an approach that will work across both, be fair and consistent is going to be a challenge. Already I am able to ask for him, is this normal? And I’m able to look at a variety of resources to know it is. Already I feel more confident in my choices with him, but as he grows and learns their will be more complexity and working out a method that fits both children may require understanding on his part. Although there is a lot of calm there is also a lot of strongly felt emotions as Ariella works her way through toddlerhood and that can manifest itself in aggression, screaming, meltdowns and repetitive phrases. The household rhythm is chaotic and unpredictable, I try to apply good routine but how can you do so when the next seizure can clear your weekly schedule and mean another extended stay in hospital? It is really mentally exhausting.

I should clarify that when I talk about the tribe I don’t mean friends of which we have many very supportive friends instead it’s about having a group of people going through the same situation as you at that moment in time. Being able to relate, support and empathise, with each other and solidarity – it’s why we sign up to due date groups, pay for NCT friends, go to mother and baby classes. There is an element of safety in numbers, entering always the unknown together it doesn’t seem quite as difficult to navigate when you always have tribes people.

I think when you are put in a position of uniqueness, you can only really put your sail up and go your own way. Sometimes your child’s health and mental wellbeing dictate their way, weaning for example requires mobility and all the developmental and structural normality to swallow. We were fortunate that we could try baby led weaning, Ariella had the mobility to do so – but what if she had not? Well then we would have sacked off my vision of how I wanted to wean her and accepted spoon-feeding puree, a completely acceptable weaning method but not the choice I had made for my child. This one tiny element would have excluded us from participating in baby led weaning but what happens when your child’s development is completely out of line from their chronological age? What if they have a medical condition that lands them living in hospital for months? I think you do the best you can to parenting how you choose to. I think that you just have to accept solidarity and find comfort in the pieces of guidance that you can apply, ignore any self-doubt and know that you are doing the very best for your child.

It is a challenge, when you consider well covered areas in terms of available guidance material like potty training. Yet potty training requires developmentally a child to be in the right place, to understand what is being asked of them (or for you to understand their cues) and those things are not always in line together with children whom are delayed in development. One area might be delayed while the other is not, suddenly all the guides and books don’t apply to your child and both of you may be frustrated. How do you overcome this? With Ariella I try my best to go at her pace and adapt whatever activity for her, we tried potty training back when Ariella was chronologically 2.5 years old yet she wasn’t mentally ready for it. Now she is mentally 2/2.5 we will try again soon, but she may still not be mobile enough for it (she cannot squat or pull to standing from the potty yet). Recognising these limitations and adjusting my expectations has really helped me to appreciate that while part of our “tribe”, that’s to say the group of parents with children born the same month as Ariella are mostly potty trained and discussing other more developed issues I am not at all surprised that we are not there yet. I no longer expect to be there and instead I look at Ariella as her unique self and consider what her needs are rather than what society expects her to be doing. This is particularly relevant during the run up to attending preschool after Summer in which there will be no hiding from the current, Ariella at the moment has not moved onto the next room at her nursery so is with children who are around her developmental age.

It’s nice in many ways to be removed from the pressure and competition between parents and their various parenting styles, I really have not had to deal with this and it’s lovely to be removed from it. In many ways I am very glad to have had the experience I have, it’s really taught me that we are unique as individuals and actually perhaps our educational system and the early years can be far too rigid. Ariella is a wonderful creative, happy, non compliant little girl and I expect absolutely nothing from her other than for her to be happy. I couldn’t possibly tell you what she should be doing at 3 and a bit years old and it’s wonderful.