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….

 

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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

Why I’m giving up on our family tradition

So for the last 3 years, I’ve put a lot of effort into doing a sensory advent calendar with Tilly.  Partly because she didn’t really understand the excitement and anticipation of a chocolate advent calendar – in fact, she was never really interested in chocolate – so it was my way of giving her something each day that she would enjoy, and perhaps a way to anticipate and enjoy (in a small way) the build up to Christmas other neurotypical children do.

I’m not going to pretend, it’s hard work planning, organising and delivering the calendar.  I mean, 24 days of (mostly) messy activities that I have to source materials for, or make, then set up and encourage Tilly and her brother to participate in.  Then there’s the general chaos and mess that follows.  I quite like a tidy and non-chaotic house so it’s a struggle for me!

An example of what we used to do was a large tray filled with peppermint scented and red-coloured rice with tubs to pour the rice in and out of; a bath filled with a jelly-like substance that I ‘forced’ the kids to sit in and ‘enjoy’; a lightbox with Christmas themed sticky decorations; and tubs of home-made peppermint scented cloud dough to feel, mould and generally throw all over the floor.  Phew, I feel exhausted just looking at that list, never mind everything else I had planned for the 24 days!

advent

I found it pretty difficult to fulfil last year because Tilly was at school full-time and very tired when she came home – it was a struggle to fit it in at a time where she was alert enough to engage with me. We tried, but it did slip and certainly wasn’t on the same scale as the previous 2 years.

In November this year, I had every intention to do an amazing sensory advent calendar and blog about it.  I’d set up exciting new activities, take cool Instagram photos and write a blog post each day.

We’re now at the end of 2nd December and what have I done?  Nothing!  I’ve thought about it, have felt guilty about it – but I’ve done hee-haw about it.  I’ve seen numerous ‘elf on the shelf’ posts and to be completely honest, all I’ve thought is ‘how can they be bothered?’.  My heart just isn’t in it this year!

Does that make me a bad mum?  At first I thought that yes, I’m failing, I’ve done it before, I should do it again.

But you know what, Tilly isn’t bothered.  She’s grown into a feisty little girl who is living life on her own agenda and is happy to try and communicate what she wants and needs (even if that does mean via loud moaning and whinging).  Her brother is almost 5 and not so interested in the ‘sensory activities’ we used to do.  He’d rather build hot wheels track and watch Top Gear!  Oh, and open his chocolate advent calendar.

Which brings me to today’s events.  I always buy Tilly a choccy advent calendar but she’s never been bothered about it.  Until today!  We opened the number 2  door and she devoured the chocolate and went looking for more.  In exactly the same way her brother has.  She’s not allowed it, she has to understand that it’s one a day – so with some persistence, who knows, by 24 December, she might understand the concept!

choccy-calendar

If I’m honest, at some point in every single day of Tilly’s life, I throw a bit of a sensory activity into her day.  She loves it, needs it and enjoys it.  I don’t document it, don’t take photos of it, or write about it so why should I give myself , or Tilly for that matter, the pressure of doing that during the already busy month that is December?

No, I’ve decided that from this point forward, the’ Scott family sensory advent calendar’ will be replaced with the ‘let’s enjoy the festive period spontaneously and without expectation’ approach.

I’m not going to pretend that I might bore you with some photos (Instagram even!) and blog posts but don’t be expecting them every day.  If we fancy a day off, we’ll have one.

And hopefully, that choccy advent calendar will become Tilly’s countdown to Christmas.

 

Bursting bubbles

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Life with Tilly has felt quite straightforward recently.  She has had a week off school due to a tummy bug, and then an overnight stay in hospital due to suspected appendicitis, but even through that, it all still felt quite ‘normal’.

But my ‘normal’, as I have realised today, is actually a way of describing how I’ve become more accustomed to living life with a child with special needs.  It’s our little bubble.  A place where I get on with life as it is, I accept the good and the bad aspects of Tilly’s genetic condition, I don’t over analyse the situation and everything feels like its on an even keel – certainly, emotions feel steady and don’t throw me out-of-sync.  It’s a nice place to be.

However, I am still on a massive learning curve when it comes to my daughter and her developmental issues – so now and again, something will inevitably happen that will jolt me out of that safe place, and burst that lovely, safe bubble.

That something happened today.  It wasn’t significant but it was enough to make me stumble, feel out-of-sync and re-analyse how life is with Tilly and what her future might be.

It actually started early this morning when I was changing her nappy.  It suddenly struck me that “Wow, I’m still using nappies for my 7 year old daughter!!”.  A few years ago, when there was both an element of denial and of hopefulness,  I thought she would be toilet trained by the age of 7.  I mean, 7!  That’s only 3 years from being into double figures.  Surely she’ll be able to understand her toileting needs by then?  Or possibly not, as the case is likely to be.

The second jolt was at an appointment with her paediatrician this morning.  It was all going fine, the discussion was progressing as expected,  when the Dr suddenly suggested that now might be the time to put Tilly through the screening process for autism.  It shouldn’t have been a shock to me because it is a subject we have all been discussing for years.  But, in the past, we have all agreed that her developmental issues are probably causing some of her autistic traits, or at least masking them.  When she remarked that this probably is no longer the case, it felt like a punch in my stomach.

But why did I react like that?  Until I started writing this post, I didn’t understand why I felt so wounded.

I now realise that it’s not just the potential diagnosis of Tilly being on the autistic spectrum – it doesn’t change who she is – it’s that I’ve been knocked out of my safe bubble where I see Tilly for Tilly, and am (potentially) being forced to give her yet another label that society has preconceived ideas about. We were happy to be given a genetic diagnosis last year because, at long last, we had an answer for why our daughter was born with the problems she has had to endure.  I felt that describing her as having a ‘rare genetic condition’ gave people enough information, it let them understand that yes, she is a little different – but that is all they really needed to know.

I was happy to be in a place where I simply viewed some of the traits Tilly has as just ‘Tilly traits’ – however, my perspective has already switched.  I am seeing her through a different lens – a lens which leaves me watching her intently, analysing her behaviour and wondering if what she is doing is in fact a sign that she is on the autistic spectrum.

I’ve written in a previous post about how I spent the majority of my time as a new mum to Tilly analysing, worrying and googling.  Sadly, I think that the time between now and her assessment (which could be months away!) will result in that behaviour returning once more.  I’ll be back to searching google like the crazed mum I used to be!

Deep down I know that she is on the spectrum, and always have, but even I have preconceived ideas of what autism is and how it looks.   And although I know a few boys with autism, I’ve not yet met any girls.  I don’t fully understand the bigger picture.

So I guess I have to figure out how to arm myself with enough information to understand how girls on the spectrum are affected, what extra support is available, new therapies we can try and connect all the dots to give Tilly the best support we can.

Then I have to move on, let the worry and analysis go – and return once again to seeing Tilly as Tilly, rather than a label.

And hopefully I’ll then find that we’re back in that lovely, safe bubble again.

 

 

 

 

 

How I met my best friends

As I walk along the street with my (almost) 5-year old son, I see two heavily pregnant women on the other side of the road.  I guess from the way they are speaking to each other in a friendly but polite and slightly uncomfortable way, that they have recently become acquainted – and from the folders they are carrying, I also guess they have just left an antenatal class.  New mums-to-be, perhaps on the start of a new friendship journey.

It immediately takes me back to 2009 when I was pregnant with Tilly.  My first pregnancy.  A pregnancy filled with trepidation and joy.  The grief and sadness I felt then hits me once more like a blow to the stomach.  For that moment, those feelings are still there, as powerful now as they were then.

A time when I longed to be a pregnant thirty-something without the worry of delivering a child with heart defects;  and later, of a new mum without the sheer panic of being told something was wrong with her child, and without the ensuing slog of tests and hospital appointments.  A time when I longed to be meeting the new mums I’d met during my antenatal classes for coffee & cake, to share our stories of sleepless nights and life adapting to a newborn, and to tentatively step into the world of baby & toddler classes with them by my side.

But as I sit here writing this now, those sad feelings have drifted away again (replaced by other challenging feelings – they never disappear in Tilly’s world!).  And I now remember how lucky I was that during that dark period of being Tilly’s mum through her first years, friendships with those new mums had been formed.  I wasn’t able to nurture them in the way that I had hoped but they were a small group of amazing women who were patient, funny and understanding.   They didn’t expect me to make it to every play date, they didn’t get upset if I cancelled a coffee meet-up last-minute, or if I was pretty rubbish at reciprocating our friendship.

They were there when I needed them on my journey with Tilly – and I’m lucky to be able to call them my best friends 7 and a half years later.

 

A Road Well Travelled

Why does being a parent of a special needs child have to mean a lifetime of tough decisions, fights and guilt?

As if having a child with health worries, developmental delays and a multitude of other concerns wasn’t enough for parents to cope with, we also have to become the decision-makers on many (if not all) milestones in their lives.  And most of those decisions are made over subjects that we’re no experts on (but we do have to become as well-versed and informed as we can be).

For example, for a typical child, the path of education is a well trodden one.  We know that when they reach a certain age (actual age depends on which country you live in), they enrol in school and begin to learn from a curriculum that has been carefully built by professionals, tested and used with success for years.  It will have been tweaked and continually monitored to ensure that it is the best and most suitable curriculum it can be.  You enrol your child in school, you have the excitement and nervousness of their first few days, then they settle into their new routine and follow the path that has been mapped out for them.  There may be some hurdles along the way, frustrations with teachers, issues with certain policies, conflicts with other children – there will always be bumps on the road – but the decision-making process for where your child will attend school, what they will learn and who will work with them along this path, has already been made.

For a parent of a child with special needs, it’s not so simple.  The big debate is whether to send your child to mainstream school, and with that comes the fight of getting 1-1 support if you feel it’s required, or to a special needs school.  This sounds simple enough but there are so many different factors to take into account.  For many of our children, it’s not a clear-cut decision.  There can be advantages and disadvantages to both – and it is a situation that must continually be monitored to ensure that the decision you made in the first month, is still the best one in the third month, sixth month and so on.

What if you can see benefits to each of the options, and are stuck with what direction to turn next?  What if you desperately need advice from the ‘experts’, the professionals who have lived and breathed educating a child like yours and can describe the successes and failures?  But what if you can’t find that expert, that professional, because nobody has encountered a child like yours before, and they don’t know what the best option is? You have to become the ‘expert’, you have to become the decision-maker on the path your child should make with their education – but other than your own education (decades ago!), you have no other experience in the world of teaching and schooling.

What if you look at all the options and feel that a mix of each of them might be best suited to your child?  But what if you are then presented with a barrier because your child doesn’t quite meet all the criteria for the input from one of the education options?  What if the next step is to fight for something you hope will be a good cocktail of education methods because it’s what your gut tells you.  It could be a wasted fight because your argument might fall on deaf ears and not actually come to fruition; or your fear that what you’re fighting for isn’t actually the answer might become apparent and you feel like you’re wasting yours and everyone else’s time.

Deciding the best path for your special needs child is incredibly difficult and exhausting.  And it comes with very little guidance and support.

We’re into year 2 of Tilly’s primary education and although we’re happy with how she’s developing, and how she’s coping, we are questioning when the right time to move her from mainstream schooling (with full-time support) to a more specialised schooling  approach should be.  She’s happy, she’s busy and she’s managing well – but we know that there are areas of her own particular development path that could be met in a better way at a specialist school that is attached to her mainstream school.  BUT…getting access to that school is not straightforward.  There is strict criteria to be met (which I’m sure Tilly will fail) – and I’ve heard that it is a fight that has been lost by many parents before me.

There is another option for her which is a 20-30 minute car journey away (not fantastic for a girl who can get car sick after 5 minutes) but my gut instinct tells me its not the best place for her – not yet anyway.  The benefits of mainstream schooling still outweighs this option.

So what do we do…settle for what we have, send her somewhere I don’t yet feel is right for her or fight for what we hope will add that little something extra, something that could nudge her development along that bit further?

There is only one answer.  I will fight – like I always have.  I’ll give it my best shot, I’ll get prepped, will get my case ready to present.

But seriously, why does it have to be so damn hard?  We need a break, we need our role as parents of special needs kids to become easier.

We need someone, somewhere, to make it easier.   A road well travelled.