Diagnosis
I vividly remember all those years ago when I first became a
mother in my early twenties, nervously holding this new little life in my arms.
So vulnerable she was that I became completely overawed at how dependent on me she
was. I was meant to have all the answers. I was meant to know what her cries
meant, what to do when she wouldn’t settle and how to relieve her colic. I was
overwhelmed with it all in those early days settling in at home.
However there was one thing I knew for certain back then; that
I loved my little baby more than life itself, and so instinctively I learnt to
know what she needed. I needed no guidebook or lessons to tell me what to do,
it just happened naturally.
Then in my late twenties, we were blessed with another
daughter and a son. Life had become full, crazy and yes at times a little
chaotic - but we had such hope and dreams for the future.
My girls were happy carefree little things, full of laughter
and smiles. However my little man worried me. Because even though he was
hitting most of his developmental milestones he was hard work. Many aspects of
his behaviour didn’t fit any checklists or tick boxes for kids of his age. He
was a handful as a toddler and ran rings around me at times I have to say. And initially
I dismissed my worries, thinking he would soon grow out of it.
However I was soon to realise that it was far more than just
your typical boisterous behaviour that was testing my skills as a young
mum. I didn’t know it all those years
ago, but I was at the start of a new phase of motherhood. One that would turn
our whole family life upside down, and my role as a mum would take a whole new
road completely.
So fast forward to now - Here I am, older and wiser. I’m now
in my mid (to late)-thirties and my son was diagnosed with Autism last year at
the age of 10. After all those years.
Altogether it took almost 5 years on the waiting list for
him to be assessed.
So I think that’s what makes my journey, and many other mums
like me up and down the country kind of unique really. Because I can’t think of
any other condition where parents have to wait so long to get the help and
answers they need. And I certainly found that my relationship with not only
myself, but with my son and my family was pushed to the limit because of it.
Because I feel like my early thirties flew past in a blur of stress and
uncertainty. I got lost somewhere in between there and now. Let me explain-
I doubted myself constantly because I knew deep down that my
son had so many hidden challenges and for years I felt like no one believed me.
I knew it was more than the terrible twos, threes or fours. And it certainly wasn’t
middle child syndrome. I could see that my son was increasingly struggling with
so many aspects of his life, but he wasn’t able to express what was happening
to him inside. So instead he would play up, resist, fight or become upset at
the smallest of things.
And eventually I began to feel like every instinct I was
having as his mum was wrong because I felt like I couldn’t help him and people
were judging me as a bad parent that couldn’t control her kid. So many thoughts
were swirling around my mind-
Why didn’t people
believe me?
Why did they think he
was just naughty?
Why could he be good
all day at school then the minute I walk in the room he would lash out?
Was it me, were they
right, and was I too soft on him… Is that what the problem was?
And this went on year after year after year. I became exhausted,
confused and tired. There are even occasions I can remember when I had been on
the receiving end of one of his meltdowns after school, and I would keep it to
myself because I felt so alone and just couldn’t face the criticism from people
who thought he was just naughty. I felt ignored as all I ever seemed to do was
make excuses for him, desperately trying to make people see what I saw.
Because you see I knew.
I just knew that when the day came for him to be assessed
that everyone else would finally see what I had known all along. That my son
was Autistic.
And then when that day did finally arrive I felt such a
mixture of emotions that I just didn’t know what to think. I was relieved on
the one hand but deeply saddened on the other as there was so much finality in
those words – Autism. All I could think
about was that it’s a lifelong condition, and the future seemed so uncertain
for him at that point.
But in the months that followed his diagnosis I came to see
that there was truly no need for me to be saddened by the label that he got
that day. Because it hasn’t changed him, rather its changed how others think of
him and that the key to his happiness.
Yes he has a label now, but it’s the right label. Not the
‘naughty’ label, or the ‘spoilt child’ label. And it has freed me of the
shackles I felt for years too. I felt like I walked around with a ‘bad parent’
neon sign flashing above my head half the time as people stared at us in the
supermarket. Or I was the ‘pushy parent’ when he refused to go to school and I
had to fight for accommodations to be made for him.
But you see now the world can understand my son due to his
‘label’ of being Autistic, he is so much happier as a result. It opened doors
that allowed us to get the right support for him. Thanks to his diagnosis now
other people can now see how much he has to offer the world too. And that is
why a diagnosis is so important for children like my son. Because otherwise he
would have continued being misunderstood and labelled in all the wrong ways.
So the bottom line is that the long wait not only affected
my son, but it affected me deeply, and there is no easy answer I’m afraid to
say, it sucks! The waiting lists in the UK are appallingly long and I wish I
could tell you otherwise but I can’t.
But mums what I can tell you is this - please believe me
when I say that there is light at the end of the tunnel. I learnt that I had
to believe in myself, and you will learn that too I promise! You are a good mum
and your gut instincts are always right, just like we instinctively know what
to do with our babies, nothing has changed just because they have grown up a
bit. And please know that your opinions as a mum are 100% valid and worthy of
being heard, no matter what labels your child has been given or how long you
are waiting for answers.
And if there are any professionals reading this, please try
and see beyond the labels, both my child’s and mine as a mum.
That mum may be labelled as a pushy parent, or come across
as defensive in meetings. But it’s probably because inside she’s feel
intimidated by you all sat at the table like you’re ready to interview
her. She may have had years fighting a
system that struggles to view things from her child’s point of view. She may
have sat at meeting after meeting having to listen to all the things her child
can’t do when she knows how much he is capable of if they could only see it. Maybe
she’s worn down by judgements and feeling like her opinion isn’t valid. And maybe
all she actually needs is for someone to say to her that they don’t have a
magic wand to make it all better, but that they hold value in what she has to say
and that they are really listening to
her.
Because after all she is just a mother. A mother doing her
best. A mother who held her baby in her arms all those years ago with such hope
and dreams for the future. And no matter what labels her child is given she
loves him all the more, more than life itself.
Autism acceptance month A-Z ( April 2016)
