Blurred lines

I’m reading a book just now about a little girl called Iris Grace, who has autism.  It’s a beautiful book – not only to read but also to look at. The photography, taken by the girl’s mum, is wonderful and there are pictures of Iris’s artwork scattered throughout the book.    It’s a book that has really tapped into my creative side (there is one somewhere!).

But reading the book has taken me on an unexpected emotional roller coaster. Yep…another one.  It has sparked a range of emotions and thoughts that I want to get down on paper.

Firstly, I should explain that although Tilly is non-verbal and has some autistic traits, she hasn’t been diagnosed with ASD (Autistic Spectrum Disorder).  We haven’t actually put her through the assessment process because we (us and Tilly’s medical team) don’t think she meets all the criteria and that many of the traits she does show are as a result of how delayed she is cognitively, rather than of ASD.  We’re already connected to all the services from the NHS she would be getting if there was an ASD diagnosis anyway – treating the symptoms is more important at this stage than getting a label.

So, back to the book.

Reading about this little girl and her family’s journey has resulted in me feeling a whole spectrum of emotions: relief, sadness, envy,  gratitude, guilt, hopefullness, hopelessness, frustration, fear. The list could go on.  To explain each of those emotions and why I feel them would take too long – and not be particularly interesting to read!

But I do want to explore one of them, namely guilt.

Guilt.  A word so commonly used by us mums, and I’m pretty sure, even more so by us mums of children with special needs. It’s a word I try to escape from, an emotion I try hard not to feel but I do feel it, most days actually.  I think I do a decent job of bringing my kids up – for a 4 year old, Elliot isn’t doing too badly and Tilly is mostly happy and content.  Elliot is learning at a good pace, it’s all falling into place quite easily and quickly for him – he’s leading the way and we’re right behind him providing the encouragement, discipline and confidence when he needs it. So far, it’s going well.

As for Tilly…that’s a whole other matter.  Her development path isn’t so straightforward, in fact I don’t actually know what the hell it looks like or what the destination is. It is certainly undulating, there are a lot of hidden bends, some pretty big ditches that are difficult to climb out of and absolutely no map to refer to.  But in between all the difficult parts of the path, there have been glimpses of the most amazing sights we didn’t think we’d ever see.  And because there was no guide, no map….no idea where the path would lead us, those wondrous sights felt all the more special.  Some were milestones that other parents would understand, such as when Tilly took her first independent steps at age 2 years and 2 months, but many others were smaller and less significant (to most) that came out of nowhere.  Like when she started to lead us to the kitchen to ask for food – or actually, when she started to eat food (that’s another story in itself!); or when she gave us a hula hoop to ask us to roll it for her to catch; or when she first grabbed the hands of everyone in the room and got us to form a circle so we would play ‘ring a ring a roses’. These were big milestones for us, she was trying to communicate and initiate play (concepts we didn’t think she understood at one point), they were signs that she was progressing, she was moving further along that development path.

But back to the guilt.  There’s an internal fight always going on in my head when it comes to Tilly.  And that’s the one where I question if I’m doing enough for her.  The mother of Iris, the 6 year old girl in my book, is an inspirational woman.  She didn’t stop searching for new therapies to try, she spent time watching Iris and learning about her and what made her tick.  She changed the way they lived to fit around Iris and her needs, she even home-schooled her to ensure she was able to educate her in a setting Iris would be comfortable with and she knew she would thrive in.  I wonder if I’m really doing enough….or have done enough.  Without any specialist taking the lead and telling us what therapies might work for Tilly, we’re kind of on our own.  I’m sure we’ve only scratched the surface of what’s out there – unfortunately, knowledge, time and money are all stumbling blocks for doing more.  So that’s where the guilt comes from.  Should I be doing more? Should I spend more time researching and investigating?  I’m having to write my own book, create my own map for my daughter’s development – and I’m no expert.  I’m scared I’m not doing it right, or I’m not asking the right people the right questions.  Or that I’m missing a really important therapy that could help her even more than the others we’ve tried.

I won’t stop searching or trying new things but I have learnt a very important lesson from a time when she was a bit younger.  We were doing daily therapy exercises from an excellent charity called Brainwave – but our mutual enjoyment started to turn into stress and anxiety because neither of us were getting as much from it as we did in the beginning.  I was having to push her to do the exercises, she wasn’t responding as well to them and I was getting frustrated.  I felt incredibly guilty when we didn’t do them – but I also felt guilty when we did.  It suddenly hit me one day that I’d forgotten how to be her mummy.  The line between my roles as mum and therapist was blurred, and I’d lost my way.  I chose to take a step back from the therapist role for a while because I wanted to remember what it was like to enjoy her, to bond with her as daughter and mummy again.  It was an empowering feeling.

So we’re now in a place where we’re trying a new therapy (Gemini), and are about to revisit Brainwave to get a new set of exercises – we’re all committed to working hard but I will be aware this time to balance my roles properly, to find that equilibrium, and not let the line between therapist and mum become so blurred.

Wish us luck!

 

 

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Friends

I wasn’t planning to write another post quite so soon but some inquisitive little minds at Tilly’s school have prompted this one.

After a difficult decision making process, we chose to send our significantly developmentally delayed, non-verbal little girl to mainstream primary school.  We did it for many reasons, but one of the factors was so that she would have the chance to learn some social skills from her peers.

It has been the right decision so far because she’s happy, she’s progressing (at Tilly’s own speed!), the support at school is amazing and she always has some ‘friends’ around her.

But why have I just written ‘friends’ you might ask?  Because, although she is a popular little girl at school – I lose count of the number of times I hear a little voice shout “Hi Tilly!” when we are out and about – I know that it isn’t because she is somebody’s real friend.  Not in the way that I had a friend at 6 years old, where we talked about everything and sang and danced our way through the early, innocent years.

Having a relationship with somebody who is unable to talk, or use sign language, or lives life by their own agenda and doesn’t understand the art of reciprocation in a friendship is bound to be pretty difficult.  For Tilly’s school mates, who don’t truly understand why she is the way she is, it must be hard for them to become proper friends with her.

I’m not naive, I know she doesn’t have real friends, she’s not developmentally able to – well, not yet anyway.  For a start, she doesn’t get invited on playdates – but to be fair, she doesn’t have playdates here either!  She does have little people around her all the time at school – they do it because they are fascinated by her, they want to help her, to look after her.  But this is a view I’d like to change.  She has an adult to look after her, she’s in the school playground to play, just like everyone else.

I am quite sure that, in some way, the children who are with Tilly a lot, hope that they’ll be able to get into ‘Tilly’s World’ – just in the same way that I do!  Perhaps that is why they all want to be with her.  Just to get a glimpse that she’s let them in, that she’s sharing something with them and that she’s showing them that she wants to be their friend too.

I’m not really sure what the point to this post is.  It’s another brain dump of thoughts I’m having today but I think I also somehow want to begin to educate people, including the children at Tilly’s school, about why she is the way she is. It might mean that I don’t get asked the questions I was asked at the school gates today….”What type of infection does Tilly have?”, “Why can’t she talk?”, “Why does she just want to splash in the puddles?”, “Why did that boy say Tilly is strange?”.

I’m made of harder stuff now than I was a couple of years ago when I was first asked by a little boy in Tilly’s nursery why she didn’t talk, and was she a baby (I didn’t let him or his mum see it but as soon as I walked away, I burst into tears and felt physically sick for the rest of that day).  I can deal with questions like todays so much better – it’s no longer like a kick in the stomach, but it does make me question how I could make things different.

One option would be to move her to a special needs school where she’s with similar children – a move we will be taking at some point in the future – but then we’re missing out on all the reasons we chose mainstream for her early school years in the first place. And being part of her community, having her around other kids who watch her each day and perhaps learn a little more about who she is, what she is capable of and how they can reach out to her and pull her out of her little world, is really important to me.

In the meantime, a little education will help.  Any parents out there reading this who have children who ask about Tilly – just send me a message, ask me to help explain.  If you don’t mind, I don’t mind!

She is a little girl with a whole lotta love to give, and by understanding her boundaries and the small signs she does give (get in her space and she’ll give you a little nudge – not to be mean, she’s just a little scared that you might knock her over), we’ll all get there.  Who knows, she might even let you become her friend.

 

A road less travelled

I’m not sure why now, after being on this special needs journey for close to 7 years, I have chosen to write a blog.  Maybe because this journey that I’m on, this unexpected path of twists and turns, has become such a big part of who I am. A part of me I don’t really fully understand, never mind anyone else.

I was about to write a brief history of my journey from being pregnant with Tilly until now – but realised after writing one sentence that to make it ‘brief’ would be an impossible task.  Perhaps in weeks to come, I’ll try to remember some of our experiences from the last 6 and a half years and write about them.  I’m not sure what the benefit of that would be but who knows, maybe it’ll be therapy for me.  And god knows I need it (but don’t we all in some small way?).

So, I’m sitting down this morning to write because I’ve got a lot of sadness, frustration and anger clouding the sunny spells I try so hard to focus on and enjoy.  But I can’t seem to blow those clouds away.

I’m in a funny situation with my children because on the one hand I have this neuro-typical, loud, smart and funny little boy who I love watching grow and learn every day.  I’m in awe of how his little brain can soak up and retain so much information in such a short period of time.  He makes me laugh and smile with his funny little stories, his crazy imagination, his desire to engage in conversation with me.  His love of his friends, the new skills he is developing each week, his confidence in becoming more and more independent. His voice….his beautiful, sweet voice. His loud and sometimes, non-stop voice!!

Then I have my daughter.  My Tilly.  My world.  She has many, many wonderful qualities.  Her beautiful smile, her infectious laugh, her cuddles.  The strength that little girl has shown to overcome so many hurdles in her 6 years on this earth is nothing short of amazing.

But…I hate that I have to write that word, but there is a but.  She isn’t on a typical journey.  Her brain isn’t wired the same way as her brother’s.  We don’t really know how it’s wired, or how it will be in years to come.  She doesn’t approach life or the world around her in the same way that the rest of us do.  And because she’s locked in a very silent world, trying to make sense of her world is really, really bloody tough.  Its not just that she can’t talk, the sensory input she gets from visual, auditory, tactile, vestibular (where her body is in space), proprioceptive (what her body feels from the world around her), is different to what we feel, and take for granted. Her brain doesn’t process sensory input in the same way that ours does.  It affects how she interacts with people, approaches the environment – in fact everything that she can hear, see, touch, feel.

As her mum, her carer, her therapist, it’s my job to help her not only cope with each day, but to find ways to make it easier for her, to teach her how to grow, how to develop.  It may not always look like I’m ‘doing much’ but my head can never, ever switch off to what she is or isn’t doing, what else I could be doing or how else I could help her. I am always hyper-aware of her state of mind, what sensory input she is getting, how she looks like she is managing it so that I can jump in and make a change if I need to – or if something upsets her later, or she doesn’t eat, can’t sleep etc, I have a good chance of problem solving what went wrong  and sorting it out for her.  In the absence of any words or signs from her, I have to – that’s my job.

We’ve just signed up to a new form of therapy – it’s based on discrete video modelling.  As I’ve touched on already, our neuro- typical brains are capable of stripping out sensory input that isn’t important to focus on what is.  For example, if someone is talking to you, your brain can pare down the unimportant stuff like the flickering of a light, the sound of air conditioning, the sounds and images of everything around you to focus on the voice talking to you.  For Tilly, this paring down of information isn’t automatic.  So through discrete video modelling, only the specific bit of information is presented to her.

In simple terms, with this new therapy, we play the same stripped down video of 4 words being said over and over to Tilly 3 times a day for 20 minutes each session.  Apparently repitition is key.

I have read some amazing success stories from this form of therapy – but as I’m discovering with all new forms of therapy we try, this leads to another unexpected emotional journey.  You start with the initial excitement and buzz that “YES!!! This could be it, this could be the answer!!”. Then after a week of only very subtle progress (I’m sure she just said raaarrrr when I asked what a bear says???!! Or maybe it was coincidence because she didn’t do it again), your positivity starts to fade again.  You keep going but question if you’re setting her up for failure, if you’re pushing for something that might never happen.  You wish somebody, somewhere could tell you what to do.

And I guess that’s the reason for this blog.  To share what our life is like for those who don’t really understand.  What life is like being Tilly’s mum – it’s nothing that any medical service has ever, or will be able to help with. There’s no leaflet or web page, or specialist out there we can refer to.  We have to work it out ourselves.  A road less travelled.