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, 42, 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. Grace is now 11.
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