When Sophie Walker's daughter
Grace was diagnosed with Asperger’s Syndrome, her world unraveled. Her
high-powered job was in disarray. She couldn't sleep, often woke in
tears, and felt hopeless and useless in her role as a mother. One
day she realized she hadn't done any exercise for months — neglecting
her physical health as well as her mental wellbeing. Through
running, Sophie ultimately found the strength to battle for Grace’s
education, happiness, and future, as well as the inner strength to
overcome her own frustration and depression. She also
began the 'Grace Under Pressure' blog where she wrote about day-to-day
life raising Grace, as well as her experience training for the marathon.
The following article is written by Sophie Walker. If you like the article, watch the interview and check out the book as well.
To
begin this article with a confession: when it comes to your child, I don’t know
what I’m talking about.
Because
I have written a book about my child, who has Asperger’s Syndrome, I am often asked
to suggest advice to parents in similar situations. And I’m always really happy
to do so because I know from experience how hard it can be to find the right
kind of support.
My
book started off as a blog. I was trying to wrangle a daily torrent of emotions
and experiences - subdue and make sense of them - by putting them down as words
on a page. I wanted to understand what was happening to my daughter and me as
we emerged after years of questions and referrals and finally diagnosis, and
were left alone to get on with our lives. I wanted to understand what would
happen to us next. I wanted to see if what I thought was happening was really
happening – the hurt and the isolation at times seemed extraordinarily unfair
and disproportionate. And I wanted to understand what it was that I was
supposed to be doing to improve the situation.
I
was very far from being an expert on autism, much less on parenting.
So
now, when I find myself being asked what guidance I can offer to other parents
of children who are on the autism spectrum, or have special educational needs,
or a particular disability, my first thought is: me? I don’t know anything
about your child.
But
you do.
You
know your child better than anyone else in the world, no matter how many letters
anyone else may have after their name or how many educational qualifications
they may have. You know when something is off. And you know when you need to
keep pushing to fix it. Don’t let other people persuade you to go away or to
subside quietly. Don’t let other people tell you it’s one thing when you think
it’s something else entirely.
That
said, don’t reject the medical or teaching community. Many of the answers and
support you need are there. Many of the people who can make things better for
you and your child are there. If help is not coming quickly or easily,
remember: you have the right to keep asking. This point can sometimes be a hard
one to remember when others keep putting up walls.
While
you’re pushing, and asking, and trying to knock down walls; while you’re
traipsing from place to place to place; or while you are sitting at home with
your child and wondering what is happening to you both, remember: You are not
alone.
This
one’s a big one, so I’m going to say it again. You are not alone. You think
every other parent out there has perfect children and a worry-free existence?
Pffft. Of course not. That said, what you may be worrying about at this point,
if there are paediatricians and psychologists involved, goes beyond everyday
concerns. But that doesn’t mean you are alone. Far from it. There is a big
community out there – a whole host of people who have been through what you’ve
been through or are going through it right now, right alongside you. The
Internet is a wonderful first reference to find people to talk to. (Just don’t
ever google your child’s symptoms or behavior before talking to a professional
first.) From there you will find local support groups. Not got one? Start one.
I guarantee you – grateful parents will come out of the woodwork at you. You’ll
never have so much company.
However,
there will most likely be times when you want everyone – including your
precious child – to go away and leave you alone. This is entirely
understandable. You must make sure that this happens. You are most likely the
glue keeping everyone else together in the scenario that is your life at the
moment. It’s important to keep yourself together in order that you can keep on
keeping everyone else together.
So
take some time for yourself. Don’t say you can’t. Work out ways that you can.
Ask a relative to help look after your child. Ask a neighbor. Find out about
respite schemes. If you work, do something productive in your lunch hour. Try
to ensure that some of what you do during this time for yourself is purely
physical. Raise your heartbeat, not your blood pressure. Feel the endorphins
kick in and remind you that life is good, that you are strong and that you can
keep going. Because you can.
And
that’s the most important thing of all. You may feel that you can’t do this.
You may feel that your life has turned into a tragedy, or drudgery, something
exhausting and joyless. At this point, tell yourself that what you are
experiencing now is a short period of unhappiness and difficulty in what will
be a long and happy life. You can do this. There are lots of people who love
you. There are lots of people who are rooting for you. I am rooting for you and
I haven’t even met you yet.
Good
luck.
Sophie Walker is the author of Grace, Under Pressure. She has been a
reporter for Reuters News Agency for sixteen years and has worked as a foreign
correspondent traveling to Iraq and Afghanistan with Prime Ministers Tony Blair
and Gordon Brown. She lives in London. Visit her online at http://www.courage-is.blogspot.com
or on Twitter @sophierunning.
Based on the book Grace, Under Pressure: A Girl with Asperger’s and Her
Marathon Mom © 2013 by Sophie Walker. Printed with permission of
New World Library www.newworldlibrary.com
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