My Top 5 Tips for a Calm Festive Season

Ah, Christmas.  That time of year when life suddenly lights up with Christmas trees, decorations, and ads flashing the must-have gifts for our children.

Don’t get me wrong, I do like Christmas.  As a child growing up my parents LOVED it….and still do!   Regardless of what else was going on in their lives, they always made it a magical and indulgent time of year for me and my sister.  I’m very grateful to them for giving us that experience.  

Over the years, I’ve tried hard to continue their enthusiasm with my own children.  Long-time followers of this page will know that once upon a time, I put particular effort into creating a sensory advent calendar each year for them to enjoy.  Inspired by Tilly’s sensory preferences, and seeing it as a way to engage her in the festivities in a way she could understand, every day saw us do a different sensory-based activity that her little brother Elliot could get involved with too.  In fact, he loved it, and I do think that seeing him get involved in each activity really helped to get her attention too.  

Now that he’s almost 12, Elliot’s interest in playing with cinnamon scented rice or dancing around the living room with disco lights flashing has faded somewhat!  He’s way too cool for that kind of nonsense now.  Life is so busy for us all now too so we just don’t really have the time or energy for a sensory advent calendar.  Even though I didn’t work when the kids were younger and had slightly more time, it was exhausting – creating 24 different sensory activities was a bit of a slog.  And on at least one of those 24 days, I replaced the activity with wine, chocolate, TV, or all 3 (for me!).   

Over the years, I’ve relaxed my approach to Christmas with Tilly – no longer fighting my own feelings to find a way for her to get on board with it in a neurotypical way.  In fact, I’ve realised that I’ve been guilty of trying to get her to change or adapt so that she fits into our world when really we should have been adapting how we approach Christmas and all the craziness it brings to suit her world.  Ableism?  Yep, guilty!  🙋🏻‍♀️

So what can you do if you have a child who might not understand Christmas, or is too overwhelmed by it?  These are my tips (learned by making my own mistakes over the years):

1). Don’t worry about finding the perfect gift.  If there isn’t anything obvious that your child needs or might want, don’t spend money on something out of guilt.  We have many toys that we ‘hoped’ might interest her but they all spent the rest of the year untouched in a box in her bedroom.  We now get her a couple of small things, usually sensory or musical based, that we can wrap up so she can open them if and when she feels like it.  

2). If you’re following my first tip but still want to spend the money you’d normally use to buy a big gift for your child, you could put it in a savings account for future use (lots of equipment our kids need cost a lot of money), or use it to give their bedroom a makeover.  

3). Be aware that all of the extra sensory input they’re likely to get over the festive period could result in a child who gets overstimulated much quicker.  There are bright lights everywhere, Christmas music playing, busier environments, more activities, and a general feeling that everything is faster paced.  If we notice a difference in how life feels crazier during the lead up to Christmas, there’s a good chance that our kids will have noticed it too, and might be struggling to process it.  Pay attention to their cues and give them calm downtime when needed.

4). Be open and honest with family and friends if there are social occasions when your child might be included.  Is there a space set up they can escape to for some quiet, self-regulating time?  Does it put too much pressure on your child if they’re asked to sit with you at a noisy, busy dinner table?  Can they eat at a different, quieter time?  A little bit of preparation beforehand can really help to make social situations run more smoothly. 

5). The big day itself.  My biggest tip is to take the pressure off yourself and your child.  Follow their lead and if they don’t want to join the rest of the family in traditions like opening presents, or eating dinner together then give them the space they need.  Christmas Day happens once a year – and that means that the routine that children normally expect for the other 364 days of the year suddenly changes.  That in itself can be overwhelming.  When you add in all of the new sensory experiences that come with a typical Christmas Day – unwrapping Christmas presents, more people around who might be louder and more excited than normal, different smells from the kitchen – it’s not surprising that it can become too much very quickly.  Take a step back and view Christmas Day from their angle.  Allow them to engage when they want and give them what they need to get through (even enjoy) their day.

Hope these tips help!

The shittiest of years – literally!

I took this photo of my girl this morning before she left for school.  Her relaxed posture, pensive but happy expression on her face really grabbed my attention.

It is a photo that is in complete contrast to one taken of her in May when she was lying on the floor with me in extreme pain with severely impacted bowels.  The difference in the girl between May and November is nothing short of spectacular and I wanted to write about the journey we’ve been on to get here.

Only now do I feel my shoulders start to drop again, and the all consuming anxiety we have all carried for a year (in fact, way longer than that as she was undiagnosed for such a long time) starting to slip away.  

I find it difficult to describe exactly what our experience through these last few months of disimpacting her bowels, and rebalancing her gut has been like without being too graphic.  To put it very bluntly, we have literally dealt with an unbelievable amount of shit!!  Un-bloody-believable!  Every single day the main topic of conversation has been about poo – quantity, consistency, smell (sorry!).  Not to mention the clean up.  Oh my god, the mess!! But Andrew and I are a pretty good team and tackled it like pro’s!

The messy poo part aside, the WORST part of the last few months has been a mix of the behavioural issues Tilly has had and seeing our girl in an immense amount of pain.  And being completely non-verbal, she had no way of communicating any of her symptoms.  Pain, frustration, discomfort and some nasty toxins circulating throughout her body led to a heady cocktail of behavioural outbursts that we seriously didn’t think we’d cope with. 

Hysterical giggling, incessant moaning or crying, throwing anything and everything in sight (broken TVs, lamps, bottles, glasses, bowls just for starters).  If she was left on her own in a room you’d think we had been ransacked by burglars!  Pulling hair, grabbing or nipping skin, attempting to open the car door when the car was moving, grabbing at me when I was driving.  There are so many things to list that may not sound bad in isolation, but when it was ALL day, every day, and could cause harm to her or any of us it was so damn stressful.  Our wonderful son Elliot not only witnessed his big sister going through all of this, but he also had to watch his parents in the most stressed out state and tried to come to our rescue on more than one occasion.  He’s only 9 but he stepped up in the way I’d hope an adult would.  Our dog, Winford, also suffered.  He resorted to hiding in another room when the going got tough – scared of the crying and panic he’d observe.   We’ve even had to work on his natural instinct to protect us over the last couple of months and help his anxiety because our normally extremely placid and sociable dog, became a little jumpy and showed some aggression with other dogs.

We tried to keep the routine of school going for her throughout it all but it was tough for them too.  Not only did they have the behavioural issues and unpleasantness of changing many, many soiled nappies and clothes, but far too often they were vomited on when her poor little body couldn’t cope anymore.  Not surprisingly, they were keen for us all to follow the school’s vomiting protocol and for her to stay away from school for 48 hours.  But after realising her vomiting episodes weren’t due to a nasty bug, but a symptom of her impacted bowels, we worked with them to allow her access back into school when she was feeling well again.  We’re incredibly grateful to them for helping us get through the worst part of it.

While Tilly has always been like most children and played up more at home than when with her grandparents, this started to change during the disimpaction process.  My wonderful parents help us out each week with Tilly to give us a chance to work (or sometimes just catch our breath) for a couple of extra hours.  But when her destructive behaviour spilled over into her time with them too it was difficult.  They coped remarkably well, but I’m under no illusion just how tough it became for them too. Several breakages (including my dad’s much loved super sized TV in his den) and a fair amount of tears from all of us only added to the overall stress. They never gave up on her or us though – and worked with us to figure out how to ease the pain and distress she was in.  And I’m happy to report that 80-90% of the time now, she is a much calmer and less destructive little girl.  Granny & Grandad are happy to have her with them (mostly!) and we can relax knowing that it’s a mostly calm environment for them.

So what have we done to get this calmer and much happier girl?

For one, we immediately switched her diet to a gluten free, dairy free one.  For the cheese monster that Tilly once was, she coped remarkably well with the change.  I’m not going to pretend that her diet is where it should be now but the changes we’ve managed to make have definitely helped.  She still doesn’t eat quite enough fruit and veg, and loves to reach for (dairy free) chocolate but, for a girl with no understanding of why we have removed some of her favourite foods from her diet, she’s managed it so well.  

Secondly, we ditched one of the main medicines prescribed by the medical profession.  Through a Facebook group I belong to for parents of children with Tilly’s genetic condition, I read a post about how an ingredient in Movicol (PEG) has actually been shown to cause neurological issues in children.  Issues such as aggressive outbursts (yep!) and tics and seizures (thankfully no).  I joined another Facebook group (Parents against Movicol) that was suggested so that I could find out more.  Our situation with Tilly was so similar to some of the stories I read that I had to investigate further.  We then made the decision to completely stop Movicol – she was on 14 sachets a day at this point which in all honestly wasn’t really helping, and it was a daily struggle to get her to drink it. 

We started a regime of using a supplement called ‘Calm’ which is a magnesium citrate several times a day, combined with a stimulant laxative prescribed by the GP.  To our delight, this combination worked!  Things started to move more than ever before.  There were hiccups along the way, including a very, very sore bum, and some other medicine (suppositories) to shift blockages.  It was a steep learning curve learning what worked and what didn’t and also trying to learn what her different moans, cries and body postures actually meant.  But I think we’re almost there and our understanding has increased so much since before her hospital stay back in March.  

We also decided to enlist the help of a private nutritionist, who advised us to get a series of tests done to get a clearer picture of what is going on inside Tilly’s guts.  It’s been a long (and expensive) process but we really do believe that some of the nutritional supplements that Roisin recommended have been the most significant in the recent changes within Tilly.  I won’t go into detail here because you’re already probably bored with this long-winded story!  But if there is anyone out there who would be interested in finding out more to help with a similar situation, please reach out and ask me for information.  I’d be happy to share it.  

We are not out of the woods yet, and are still trying to find the perfect balance of medicine, nutritional supplements, diet and behavioural support but the difference in Tilly is wonderful.  We’ll continue to keep fighting the battle to get her digestive system working the way it should, and deal with the behavioural issues in whatever we can.  Those are still there but nowhere near as bad as they were.  She is a severely learning disabled, autistic child who is going through puberty – so to expect her to have zero behavioural issues is a monumental ask!  But at least we’re now better equipped to understand where some of the outbursts come from, and what we can do to help her. 

Thank you so much for reading.  If this little ramble of our journey can help anyone who might resonate with some of the issues we have faced then it would make me very happy.  This year has honestly been one of the toughest we’ve been through – and that’s saying something because our poor girl has been through some pretty tough times in her 12 years!

Eleven

Tilly is 23 days into being 11.  My little girl is growing up.  She’s grown so much over the last few months.   Her skinny little frame is filling out and my once waif-like child who I could scoop up with one arm is now impossible to lift.

Her understanding has progressed so much more than I thought it would; she has become extremely headstrong and is focused on getting what she wants – you go girl!  She uses a couple of signs with confidence every day and, in most situations, has no problem non-verbally communicating her needs and wants (you’d like a bath?  Yep, just take your nappy off and throw that and the bottle of bubble bath at Daddy while he’s on a Zoom conference call, that’ll make your needs known!).

Her once limited diet has been replaced by a desire to eat EVERYTHING!  And her stretch upwards has meant that she’s now able to reach most shelves, window sills, hiding places for food that I try to sneakily put out of sight.  Seriously, how did she know that I hid the block of cheddar cheese on the recipe book shelf to stop her continuously gorging on cheese?  Did she watch me hide the sweets in my office?  She must have because she just emerged from my little (unused) haven with a half-eaten packet of fruit pastilles!  And god help you if you’re eating something that she fancies a bite of – she’ll just dive right in there and take a chunk out of it.  Cheese scones appear to be her favourite at the moment.  You’ve been warned!

But whilst all of this is amazing, funny, cute and wonderful – it’s also exhausting, scary and heartbreaking all at the same time.

Her understanding has progressed….but nowhere close to the level of an 11-year-old.  I’d still be scared to put a number on it but she’s definitely around toddler age.

Imagine having a toddler who is playing on the beach.  You tell them it’s time to leave, which they hear and understand… but they refuse to get up and go because they’re having too much fun.  You try to reason with them, then try using an ultimatum if that doesn’t work, “if you don’t get up now, you won’t get an ice-cream”, and as a final resort, you have to physically remove them from the beach.  Try doing that with an 11-year-old girl who understands the part about “the beach is finished, it’s time to go” but doesn’t understand the reasoning or ultimatum part.  Your only option would be to physically remove them.  But they’re just too heavy to lift and carry off the beach now.  It is physically impossible and utterly exhausting.  Not to mention knowing that lots of eyes are watching you have this battle, whilst judging, whispering or even sympathising.  But it’s become so ingrained in you, that you put on that armour and ignore it.  It’s not until you eventually get off the beach, and start walking away that you can take a breath, loosen your tight shoulders and take stock of what just happened.  Again. Sometimes you laugh, sometimes you cry.  But you know it’ll happen again so you have to shake yourself off and get on with it.

Unfortunately, on most trips we take nowadays, we have this battle.  She wants to attempt to walk and explore a little.  Wonderful!  But if she’s not ready to move on, then she won’t!  Trying to lift her back into her buggy when she’s resisting is a 2 man job and, even then, it kills my back.  But I don’t want to force her to stay in the buggy – it’s great that she wants to use her muscles to walk a little more – but I’m scared of the day that I’m on my own and I simply can’t lift her off the ground and we’re stuck.

 

She has always had an obsession with water, and uses it for play, sensory input and to help her relax.  As she’s had nowhere else to go during lockdown and she doesn’t have any typical play skills, water play is her go-to activity.  We’re up to 3 baths a day now (and our bathroom has been wrecked by her constant splashing).   In between the baths,  she might attempt to fill a tub from the kitchen tap, but doesn’t know the difference between hot and cold and always goes for the piping hot tap, and although she can turn it on, she doesn’t know how to turn it off again.  Or she might continually drag me out to the garden and ask me to fill buckets with cold water from the outdoor tap – even in cold, windy or rainy weather.  If I don’t fulfill her requests for this water play, the tears and tantrums ensue.

The support during lockdown has been non-existent.  Nada. Nothing. Left to our own devices.  I had to down tools on my social media business almost entirely as caring for Tilly is a full-time role.  My husband Andrew has a full-time job, and he’s the one who pays the mortgage so giving him the time and space to work from home has been essential. He has been able to juggle his diary a little to give me some respite each day, and to allow me to homeschool our 8-year-old son.  I have also managed to continue with the at-home version of the fitness classes I did pre-lockdown to keep my mental health in check – sometimes done whilst trying to run to the kitchen for yet more snacks for Tilly!

But now that we are 5 months down the line, I will admit that I’m feeling really quite broken.  Even the few hours respite I now get each week from my parents and Tilly’s Personal Assistant aren’t giving me the time I need to take stock of life, my business and our whole family’s needs.

I’m so, so scared about how we, her parents, will cope with her in years to come.  Will we get any help?  Would we want to enlist the help of strangers if that is an option available to us?  What do we do if she becomes too difficult to handle physically?  There have been so many questions pop into my head over the years that I used to be able to easily push away because it was “too far ahead to worry about” – but they are now becoming very real and valid concerns.

Over the years I’ve found that writing about our life and how I’m feeling can help to get me out of a dark place.  By sharing with others the fears I have about how we’ll cope with an even bigger Tilly; the absolute exhaustion I feel on a day to day basis; the overwhelm and anxiety of constantly being on alert (what if she runs that piping hot tap and I’m not there, or pulls out the sharpest knife from the drawer without me noticing because she wants some cheese cut, or wanders away when I take my eyes off her for a second?) I hope will allow others to understand what life in our little world is like.

 

 

 

 

 

Growing up

My daughter is changing.  It’s a change that has been creeping up behind me but I’ve naively ignored it and instead focused on my merry stroll forward – too scared to turn around and face up to the scary reality that my little girl is growing up.

Tilly no longer looks like the teeny tot I still see her as.  She is stretching, she is filling out, her shoulders are becoming broader, her legs longer and more muscular.  Her posture is changing, her hair is growing and her face is more defined.  And puberty is on it’s way.

My small, petite, poorly child is growing into a healthy, strong big girl.  It’s wonderful.  If the anxious and scared mum of Tilly, aged 1 (a baby girl who refused to eat food or drink high calorie prescription formula) had an insight into this vision I see before me now, she would have relaxed, trusted her daughter’s feeding development path and enjoyed her baby girl a whole lot more.

Sadly, inside this strong 8-year old’s body, is the brain of a much, much younger child.  I don’t like to put a number to it – probably because it would be too frightening  to say it out loud (even though, deep down, I know roughly how low that number would be).  She has always been delayed, in fact significantly so.  But when she was smaller, it was easier to dismiss the delay.  Her peer group were ahead of her, but they were each at different stages of development so there wasn’t a ‘norm’, and because she was so much smaller than them all, we could hide behind the delays a little.

But these growth spurts are highlighting how affected she really is.  We have moved on from using the term ‘Global Development Delay’ – a term that implied that she would catch up – to ‘Learning Disability’, a term that I now know will never go away.  And to add to her labels, she also has an autistic spectrum diagnosis – another label that won’t ever go away.

Whilst her peers are proficient at reading and writing, becoming more independent and able to look after themselves in many ways, Tilly is still unaware of her toileting needs and is in nappies day and night; she doesn’t have the motor planning skills to figure out how to get herself undressed or dressed; or the fine motor skills to spoon feed herself.  The list goes on.

She has progressed so much in the last couple of years and I see such a difference in her in so many positive ways.  But these last few weeks have highlighted how life with Tilly is changing and bringing with it a whole new set of challenges.

When she refuses to walk from one room to another in our house, I used to swiftly pick her up and take her there.  She’s too heavy now, and even though I consider myself as being in reasonable physical shape, my back suffers badly if I attempt to pick her up now.

Her giggling episodes are more frequent and more bewildering the older she is becoming, and I struggle to calm her down.  When once I would pick her up, and cuddle her tightly to give her the proprioceptive input she needed, I can no longer do that.

Her giggling fits are often accompanied by her refusal to stand up which makes changing a dirty nappy almost a mission impossible (her giggling episodes are definitely associated with digestive issues – but there’s nobody out there who has taken this seriously enough to help).

Then there’s impending puberty – which she is already showing signs of starting.  I don’t even want to think about how to manage any hormonal issues that affect her behaviour, or the prospect of her wearing a bra, or her starting periods.  We’ve (hopefully) got a few years until that hits but it’s a scary reality of what is to come.

So, once again, it’s time to get my research head on and find out all I can about dealing with this next stage of our journey because that special educational needs parenting manual doesn’t exist.  My hope is that the (much!) older version of myself will be writing a blog in years to come about how easy this part of Tilly’s life was and that I shouldn’t have worried.

In the meantime, if you are reading this and have any insight, experience or information into what’s to come and how to help us, please get in touch.  I’d love to hear from you.

How to be a mind reader

Who is this ‘not-so’ little girl in front of me?

She’s Tilly of course, my daughter, but who is she?  What goes on in that complicated brain of hers?  When she isn’t ‘present’ in our world, where does her mind go?  What does she think about?  She can’t speak, but does she have an internal commentary, a silent dialogue with herself, that I’m not party to?  Is she able to create words in her head, but unable to vocalize them?

How does she feel when she sits in the bath, her favourite activity, splashing the water?  Is she trying to create more bubbles, or is she simply fascinated with the way the water moves?  How it looks as it changes when it’s splashed on the side of the bath, or on her skin, or thrown over the side?

I’d love to know what goes on in her head when I play certain music to her – songs that are slow and melodic, the type that help to ease stress.  Does she find them as relaxing as I do?  She can become so absorbed in them that she looks into the distance and, other than the occasional twitch of her fingers or toes, looks entranced and utterly relaxed.  Does she feel the intended effect of the music, or is this one of those episodes when she’s drifted off into her own little world, unaware of the music or her surroundings?

When her brother plays with her and looks her in the eye to tell her or ask her something, is there a part of her that wishes she had the ability to answer his question or to tell him something about their game or their day?  Does she feel sad that she can’t have a reciprocal conversation with him?

Does Tilly feel the frustration (I think) I see in her when she attempts to play a game, such as a jigsaw, and can’t put the pieces together?  Or am I projecting my own frustration on her?  The smile on her face and the eye contact she makes when she succeeds at something tells me that she shares my joy of her success.  But does that work the other way?  Does she understand when she is unable to do something or does she just move onto the next activity without giving the first a second thought?

I’m asking myself these questions because today, rather than jump out of the car when Tilly & I arrived home from school, we sat for a few minutes listening to the music I was playing (Holocene by Bon Iver and Wait by M83 for anyone who is interested).  I watched her.  Then when I put her into the bath, I didn’t walk into her bedroom to tidy up and listen to her splashing from a distance.  I watched her.

As I’m sure so many of us are guilty of,  I spend too much time just ‘doing’, without actually stopping for a moment to look at the here and now.  Mindfulness I believe it’s called – something I’ve tried several times and failed at!!

But our children are growing up so fast, and there is so much I’m not really ‘taking in’.

For her brother, it’s about enjoying the innocence he still has and listening to the stories from his wild imagination, or hearing him talk to his cars and toys as if he’s recording his own ‘YouTube’ video.

For Tilly, its about learning more about who she is rather than seeing her as my daughter with the additional needs that I need to fight and campaign for.  She is a person, with a wonderful little personality, but there is so much more that I can learn about her if I just stop and watch her more often.

Here’s to more watching and listening, and less running around and doing!

It’s sometimes a difficult journey

“I’m the mum of a child with special needs, and I struggle with depression.

It’s not easy to admit that, but to be honest, I’m tired of hiding it.  Because truth be told, it’s exhausting; I’m 8 years into this journey and though I have had many good times, and try to remain positive, I have also had plenty of bad times which leave me struggling to get up in the morning and face the day.

I’m currently going through a low period, so I thought it would be a good time to write an open and honest post about why I’m struggling, in the hope that it will help clear the dark clouds hovering over me, and so that it can perhaps help others to talk about their feelings too.

Firstly, I don’t want you to think that I’m depressed because I have a daughter with special needs.  I accepted that a long time ago, and feel thankful that I have such a special bond with my strong, beautiful and courageous little girl.  Nor am I depressed because this life isn’t the one I thought (pre-children) that I’d be living.

I believe that I’m depressed because I’m actually emotionally and physically knackered! Don’t get me wrong, I know that parenting in itself has that affect on almost every parent or carer out there.  But there is a big difference between my parenting experience for Elliot and for Tilly.  It’s not only that she is harder work because she still wears nappies; needs help to get in/out of the bath/car/bed; can’t communicate her needs and wants easily; and needs constant supervision.  It’s that I rarely get a chance to have a sustained period of not thinking about the next battle I have to fight for her….or the next appointment or meeting I have to attend to discuss her…or the next report I have to read…or the next form I have to complete…or researching the latest therapy we should try.

It’s the things that draw you into an internal battle between your emotions and your duties to be your child’s advocate – a constant pushing and pulling scenario that, after several weeks of the same, can leave you rather broken.

That has been life for the last few months.  A lot of the enjoyment from being Tilly’s mum has been removed, or at least bruised, because I’ve had so many of these battles to deal with.  I’ve been struggling to find the energy to pull myself up, shake myself off and enjoy my journey with Tilly.”

I wrote this a couple of months ago when I was having a tough time.  But I didn’t finish it, and didn’t feel ready to publish it.

But having reread it, I’m reminded of how difficult life on this journey can sometimes be.  And I do want to share it now.  Because it’s not always that difficult.

Right now, it’s not all that bad (touches her wooden table for luck).  We’ve had a lovely Christmas break, Tilly and her brother have been playing together more than ever, she’s been going through a fun (but mischevious!!!) stage, and many of the fights I had to embark on have been won…more will follow on that soon.

I’m at a stage in our life where I’ve started to focus on myself a bit more.  I’m enjoying fitness again, which was always a big part of my life and is a great tool for helping me deal with depression, but was put on hold when Tilly was born.  I’m also not having to attend meetings and appointments several times a week and actually have some free time.  So I’ve taken the plunge and have signed up to study for 6 months in preparation for my grand entrance to the world of employment again.

There will be tough times and battles to be won again – life has a funny way of throwing the bad stuff at you – but the longer this journey goes on, the more armour and ammunition I am building up so that the battles will be easier to fight.

 

 

 

 

 

 

 

 

 

 

My post A-Day wobble

Damn you, you so called ‘autism experts’.  Damn you for making me wobble and look at my precious daughter through those eyes again.

Those eyes I looked through years ago when our little girl was being analysed and tested for so many scary things.  The eyes that delayed me connecting with my own flesh and blood, from creating that special mother and daughter bond.

The eyes that made me question every movement, look, sound or twitch she made, wondering if it was ‘normal’.  The eyes that searched google morning, noon and night in the hope that I would be the one to find the answer so that I no longer had to subject her to daunting hospital appointments and horrible tests.

With the help of my wonderful Crossreach counsellor, the eyes I worked so hard to switch off and replace with the loving, true eyes I now see her through.  Until A-Day.

You almost did it.  You almost switched them on again – they have been flickering on and off since that day, but I have made sense of it all.

She is still the same beautiful girl she was before.  She doesn’t just see me as a tool to get what she wants, she sees me as her mum – and I know she feels as much love for me as I do her.  She understands our relationship, in fact, she understands her relationship with all the key people in her life.  The way she ran to her Aunty Sally and gave her a massive cuddle when she walked through the door today.  The way she lights up when her brother is in the room.  She connects with people in the same amazing way today as she did before A-Day.

I almost let it happen, but this diagnosis isn’t going to change anything.  It’s given us a little more ammunition and a massive amount of fighting spirit to get what is best for her, but she’s still our beautiful, happy and wonderful Tilly.

 

 

A-Day

My name is Michelle, and my daughter is autistic.

Now that’s a phrase that I hoped that I would never have to say.  But after a 3 hour appointment this afternoon, where my daughter was observed and analysed by 2 people who had never met her before, that is exactly what I’ve been told is the case.

“We can tell you that after observing her this afternoon, she does indeed meet all the criteria for us to give her an ‘Autism Spectrum Diagnosis’.  Now, get on your way.”

Or at least, that’s my interpretation of how our meeting went.

In one fell swoop, they took away all hope and positivity I had about my daughter’s future.  The delight I’ve been taking in her relatively recent ability to communicate her needs to me and others by taking us to what she wants has been diminished to an autistic trait.  “She is merely using you as a tool to get what she wants – you are not a person to her, she is taking you to what she wants but not using any of the skills we’d expect to see from typical children such as pointing or making eye contact to communicate her needs.”  So you’re telling me that the mini-celebrations I’ve been having about Tilly making it clearer about what she wants is actually a trait of autism, and that I shouldn’t be rejoicing that her development is progressing?

“And now what?  What are the next steps?”.  I ask.

“Well, nothing.  You are already getting the services she will need so there is nothing more we can do.”

And there it is.  My fear of what might happen if today’s outcome was that Tilly did indeed have autism.  The grand total of nothing.  The pathetic 6 week block of speech therapy (if we’re lucky) we get already will remain that.  The ridiculous input and support from Occupational Therapy will remain just that.  The educational support she gets will remain the same.  She may be able to access the ‘specialist communication provision’ that is on our doorstep – but there is no guarantee as spaces are limited.

We’ve got yet another label, another issue to deal with but with absolutely no support whatsoever.  Why?  Why is this acceptable?

In the words of the paediatrician who saw her today, her communication issues are preventing her from learning – but as there is nothing in place to address this, how will learning ever improve?  We’ve been given a mind-blowing diagnosis and set on our way.  Our 8-year old daughter has had issue after issue to deal with since she was born, and still, we are having to fight our way through whatever bloody system is in place to get support that will help her.

It’s only been a few hours since her diagnosis but after a good chat over a bottle of wine with our wonderful friend who works with Tilly, we are already preparing ourselves for battle.  If nobody is going to fight her cause for us, then we will have to prepare our armoury and go in all guns blazing to get the support and education she should be entitled to, and very much deserves.

So I will continue to celebrate all the things Tilly achieves and the progress she makes, not because of her new label but in-spite of it.  When she looks me in the eye and smiles or gives me a cuddle because she wants to hold her mummy I will continue to be proud because regardless of all the obstacles she faces; she continues to fight and move forward, unaware of her labels.  And because she is so utterly incredible we will fight tooth and nail all we can for her, to get all the help and support she needs and deserves.

Here we go again….

 

Why you shouldn’t feel sorry for me

I’ve noticed recently that the response I’ve received when I’ve told anyone about Tilly’s genetic condition and her resulting ‘special’ needs, has been a sympathetic one.  Generally, something along the lines of “oh, I’m really sorry to hear that.”

I want to write a post to ask you , please, don’t feel sorry for us.  Please feel happy and delighted that we have been gifted with the most wonderful, loving, strong-willed, brave and beautiful little girl.  Just in the way that you’d respond if I told you about Elliot, Tilly’s ‘neurotypical’ little brother.

Don’t get me wrong, it has been a more difficult journey in so many ways than the one we’re going through with Elliot, and at times I have really struggled, with many tears and tantrums to get myself through it.  The journey will continue to throw obstacles in our way, with battles to be won, difficult decisions to be made – but these obstacles are mainly a result of the system we are forced to deal with.  It doesn’t change who Tilly is, and doesn’t change how we all feel about her.

For a little girl who is unable to talk, she brings love and joy to so many people.  And none of those people feel sorry for her – they love her for who she is, appreciating and rejoicing in every little step she makes in her development (of which there are many at the moment!). When those sparkly eyes of hers connect with yours, it is such a special moment.  She is able to communicate with you on a level you didn’t even know existed.

So, please, don’t feel you need to say sorry.  Instead, ask me about her – she’s one of my favourite subjects so I’ll happily tell you all about her.  Alongside her little brother Elliot, she is the most special and wonderful human being I have ever met.

If you’re lucky, maybe one day you’ll meet her and be able to enjoy some of the Tilly magic too.

 

 

Why I’m returning to blogging

Hello, it’s me, Tilly’s mum.

You’ve not heard from me for a while.  I’m sorry for the silence.

I’ve tried to write to you before now, but each time I start, something happens – a little person demands my attention, I get distracted by a phone call, I have to put the laptop down to hang washing up, or sometimes I just can’t write.  I start, but the words don’t flow.  Actually, that is the main problem.  I have writer’s block.

But I think I know why I’ve been having trouble putting (virtual) pen to (virtual) paper.

I joined some ‘blogging’ Facebook groups a couple of months ago, and rather than inspire me to write more, they’ve had the opposite effect.  I read post after post about linky’s, post reach, affiliated links, bloggers being paid, statistics for this, statistics for that – and I got the fear.  I felt out of my depth, lost my way and completely lost my desire to write.

What I’ve realised now as I’m writing this, is that I had forgotten why I started my blog in the first place.  It wasn’t to watch the likes and shares on the statistics rise in numbers, it wasn’t to reach the masses.  It was to share my thoughts and experiences with those who were interested and could learn, or teach me, something from them.  It was also a way to decipher my thoughts and worries – the process of writing somehow provides me with a technique for self-therapy.

So why am I writing now?  What has changed?

Two things have happened recently that have made me re-evaluate my blogging (non-) existence:

1.  I was surprised to find my name listed on the nominations for 2 different awards for the upcoming BAPS Awards (blogging awards for us Special Needs bloggers/parents).  I’ve no idea how I got on there (thank you if you happen to be reading this), but it has prompted me to think about why I’ve not been blogging and what has been standing in my way.  It has also given me a little lift in my confidence – perhaps there is someone out there who has read something on my blog that has resonated with them, or helped them, or they may have simply enjoyed reading one of my posts.  It was reason enough for them to nominate me and that is such a lovely feeling.
2. I’ve been struggling a little with depression.  Unfortunately it’s a condition (a side effect of our circumstances even) that many parents like me have to deal with during our journeys with our children.  On a daily basis, I experience a myriad of emotions – I can be brimming with positivity about how well Tilly is doing one minute, then before I know it, I can suddenly become overwhelmed with sadness and fear about her future.  Add to that the fights we have to undertake in order to get answers/decisions/support; the appointments and meetings we have to arrange, attend and follow up on; the struggle to find the time and energy to manage a home, family and job (though not me…I’ve not figured that part out yet!); the therapies and help we provide our children.   It doesn’t take long for it all to become too much to handle.

After some analysis (well, a coffee and a quiet moment to myself), I had a light bulb moment.  Perhaps there is a correlation between my depression and writing my blog!  I’ve not written anything for 2 months…..and I’ve been feeling low for around, em, 2 months.

So, you lucky readers, expect more ramblings from me in the coming weeks.  This is a particularly selfish and self-indulgent post which I promise won’t reappear.  I will get back to writing about my beautiful daughter Tilly – and believe me, there is a lot to catch up on!

Hopefully you’ll stay with me and continue sharing this journey with us.  But if you don’t, that’s OK.  I’m not about the numbers – I’m about you gaining something (anything) valuable from my thoughts.

xx