Guest Post by Tennille Graham.
I carry with me, every day, a rather special title. Not one you’d aspire to such as Director or CEO. No. I am a special needs parent, and as such I have developed a highly specialised skill set. Special needs parents such as myself do not get to choose this new title: it’s thrust upon us when our child is first diagnosed (either in-utero or later in life). And one never stops being a special needs parent. There is no downtime. No holiday. No long service leave. Certainly, no golden parachute. It is the epitome of a full-time job.
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Being a special needs parent is challenging. At times thoughts, such as “My child is struggling, and I don’t know how I can remain strong for him/her” or “I have done everything I can, what more can I do?” will float through your head. This is normal; it’s ok. The internal thoughts of special needs parents can be quite negative, and sometimes self-destructive. Some days it hard to cheer ourselves on, when our world of constant therapy appointments, doctor visits, interviews, school requirements and paperwork, leaves us feeling like we are not moving forward, but rather reacting to each crisis. Many days or weeks in that we remain; effectively stuck in the ‘sameness’ of each day.
If you are a special needs parent, like me, then here are 5 survival strategies that can help you through the long moments, days or weeks with your child. If you aren’t, but know someone who is, consider the following as an insight that may be of benefit to you, too.
Develop your friends and support network
Special needs parents don’t choose the loneliness that comes from being a carer to our child; it is pushed upon us. In between the therapy and doctor appointments, plus the needs of our child, it’s hard to nurture and maintain relationships. It takes a lot of effort and understanding to build a support network of friends and professionals. But this is a vital part of the community that surrounds your child.
You cannot be everything, everyone, and everywhere for your child. You need to manage your mental, emotional, and physical health so that you can be at your best to care and advocate for your child. Identify those friends who you can turn to when you need to just to rant about the frustrations you may be facing, or to share the small victories and developmental milestones that are a challenge for your child to achieve, and will celebrate alongside you. Friends who don’t feel they need to provide answers or solutions to your situation are essential to decreasing the loneliness you experience, and to once more feeling connected to someone other than your special needs child.
It’s important that you build a support network of people you can turn to in times of emergency, or for assistance when advocating for your child’s needs. These people may be your doctor, a social worker or therapists, and this network may include many or a few people. Allow them to assist, and ask your network for assistance when needed, they usually know how to manage the system to your child’s benefit. They also work with other families in similar situations, and this can help remind you that you aren’t as alone as you may feel.
Read a good book
A good book can sometimes be the remedy to a very stressful day. Regular reading has been shown to relax the body, feed the brain, and enhance the quality of one’s sleep. What the book is doesn’t matter: as long as it is engrossing and stimulates your creativity. Be it a 1000-page novel you thoroughly enjoy, or a magazine with shorter articles that can be digested in short time frames. Whatever it may be, use the book as a tool to escape and to allow yourself to measurably reduce your stress levels by up to two thirds. (“Reading ‘can help reduce stress’”, The Telegraph, 30 March 2009).
There will be times when the role of a special needs parent is all too much and you need to just tune out, rather than dive into a book. A song has amazing abilities to calm the brain, and singing can help you relax through deep breathing. If you don’t use the music app on your phone, take the time to figure it out and get a couple of your favourites on there. That way, when times are crazy and you need to quickly escape, it’s ready.
Sometimes, however, it all gets a bit much and veg-ing out in front of a loved TV show or movie is all you want to do. I want to encourage you by saying: there’s nothing wrong with doing just that. We get used to being so busy, and having so many demands on our time, you are allowed to take a bit of time to yourself. Indulge in an old favourite, or discover a new one. Just don’t feel guilty about taking some time to yourself.
A safe space is somewhere you can escape, either to read your book, listen to music or meditate. Its somewhere you know you will not be disturbed for a few moments. It’s a place that you can quickly move to, if the situation is tough. My safe place is my big, blue and ugly couch in my bedroom. It’s comfortable and I can curl up to think and process. It’s away from the main family areas, which decreases the chances of being interrupted. Others may find their happy place is a warm bath, or shower, or perhaps a hammock in the back yard. Take the time to carve out your own private corner of your universe.
Great Pillow and Mattress
Sleep can be the enemy of any special needs parent. Quality sleep is even harder to achieve, but it’s imperative to ensure we are functioning at our best for our child’s needs. Purchasing a great pillow and mattress within your budget is essential. Knowing that at the end of the day you have a comfortable place to lay down and recuperate, assists in relaxing the mind and body for sleep. I encourage you to upgrade your pillow and/or mattress as soon as you can. It will do wonders for your mood, patience and daily outlook as you rise each morning to begin the day.
It is no easy task being a special needs parent when there is so much more unpredictability in caring for your child, and frustrations to be faced in accessing the needs of your child. Therefore, it’s vital that you care for yourself: mentally, emotionally, and physically. Watch out for those negative thoughts or feelings and use them as a clue that it’s time to use one of the strategies I recommend to recoup, recharge, and re-engage the latest problem to arise that needs your attention.
Finally, a message for those who aren’t special needs parents yet have read this far. Do your best to assist a special needs parent you may know in managing their daily life. I’m not suggesting you find out their favourite TV show, or hire a masseuse (though don’t let me stop you!). Perhaps bring dinner over one night with no expectation to stay and share it. That half hour of meal preparation you’ve saved someone is half an hour of time they can use the strategies above to rest. Speaking from personal experience, it’s the best feeling in the world.
Tennille is the Cloth Nappy Doctor which encompasses blogging, product development, retail and the distribution of Bummis, Breastvest and Funky Fluff in Australia. A tenacious mum to 3 boys and a beautiful daughter who has severe disabilities. She is always looking for the next adventure and would love you to join her.