This is a post by Sophie Walker, author of Grace, Under Pressure: A Girl with Asperger's & Her Marathon Mom. Sophie is a mother, marathoner, author and campaigner. She started a blog with her elder daughter when she was diagnosed with Asperger's Syndrome and both were struggling to find help and support. "I wanted to give her a voice, to show with what dignity and courage she went forward every day, and with what humour and fortitude she overcame challenges." The blog post below is based on her book.
To begin 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. I started writing my book after my daughter – after years of referrals –was diagnosed because I knew precisely nothing about parenting a child with Aspergers. I needed to make sense of a daily torrent of emotions and tough experiences. I needed to know what would happen next. I needed to understand what I was supposed to be doing to help. The hurt and isolation were enormous.
So now, when I am asked to offer guidance to others, I am happy to do so. But, to be honest, my first thought is always: 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 qualifications they may have after their name. You know when something is off. You know when you need to keep pushing. 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 your child are there. If help is not coming easily, remember: you have the right to keep asking. This can sometimes be hard 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; 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 will say it again. You are not alone. You think every other parent has a worry-free existence? Pffft. 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 community out there – 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 place to find people to talk to. (Just don’t ever google your child’s symptoms or behavior before talking to a professional first.) You will find local support groups. Not got one? Start one. Grateful parents will come out of the woodwork. You’ll never have so much company.
There will also be times when you want everyone – including your precious child – to leave you alone. This is entirely understandable. You must make sure that this happens. You are most likely the glue keeping everyone else together. It’s important to keep yourself together so 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 or a neighbor to help look after your child. Find out about respite schemes. 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 you are strong and that you can keep going.
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 is a short period of unhappiness 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.
Sophie Walker is the author of Grace, Under Pressure. She has been a reporter for Reuters news agency since 1997 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 www.courage-is.blogspot.com or at authorsophiewalker.com. 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