As the parent of a special needs child, most of the time you are juggling appointments, diets, medication, schooling, work, siblings and well, life in general. That is all before you get home and have to manage your darling child with special needs and everything that comes with that.
You often underestimate the amount of pressure that rests on your shoulders – both that you place on yourself and that which others place on you. Sound familiar?
Let’s look at the first part.
As a parent we naturally put a huge amount of pressure on ourselves to be ‘perfect’.
With a typical child there is always a perfect mother or father out there to live up to, but when you have a child with special needs, the stakes just seem to be higher again. You feel like you need to constantly ‘do’ for your child to give them every opportunity to succeed in life. From the most basic of tasks that will allow them to lead an independent life like dressing, eating, drinking and communicating to giving them the skills to educate themselves for a promising future. We want to give them everything.
And then the second part, the pressure put on you by those around you. You’re probably seeing three or four therapists for your child, and while all of these therapists should be working together, often they are competing for your time, efforts and the importance you place on them. Each therapist gives you homework to go away and work on with your child that you need to fit around all the other demands in your life.
Then there are the well-meaning friends and family who have opinions or suggestions on everything, or knows someone who said this is what you should do! They no doubt have your best interests at heart, but their advice often feels like another stab in the heart that you should be doing more.
Now, we’re still looking for this ‘perfect’ parent that exists in his or her own eyes and in the eyes of others. It is important that parents of children with special needs cut themselves some slack and realise what a great job they are actually doing.
Here are our 6 tips for parents to manage the pressures of having a special needs child:
1. Be realistic
There are only so many hours in the day, and life is about balance. We all want to do the very best for our children whether they have special needs or not. We can’t always fit everything in so think about what you can realistically achieve today, this week, this month and this year.
2. Give yourself some ‘you’ time
We all need it, so take it. It might be a five minute cup of tea or a five hour shopping trip but take the time you need to remember who you are. Your child or children mean the world to you but it’s important to do small things for yourself whenever you can to keep balance in your life and make the time with your children quality time.
3. Prioritise goals
Children with special needs often have many things they need to work on at one time including speech therapy, occupational therapy, physiotherapy, behavioural management, sleep therapy, medical procedures…the list goes on. Sit down and prioritise what is important to concentrate on in the short, medium and long-term and assign an A, B or C to these accordingly. A = this week, B = this month and C = this year. It may take a few goes to get the priority order right but it will help you focus on the things that matter, when they matter.
4. Create a calendar
It’s the best way to manage your time and the appointments and therapy you need to fit into your days. Schedule work time, school time, therapy time, appointments, meal times etc. and stick to it. Make sure your calendar also has some down time for you to just relax and enjoy some fun time with your child.
5. Be upfront
It’s easy to get caught up in appointments with different therapists and specialists and agree with all of the activities and tasks that need to be done, but make sure you’re upfront with your therapist and tell them when you have a really busy week at work or have a heavy load in terms of other therapies or medical procedures to be undertaken. It’s not your homework in 10th grade, they do understand when you can’t fit it all in and they may be able to highlight the most important tasks to work on.
6. Ask for help
When you’re feeling the pressure, ask for help. This might be from your partner, parent, sibling, friend or colleague. Everyone around you wants to help but often don’t know how. So ask your colleague if they would mind covering a shift or helping you with a project, and ask a friend or family member to take your child to an appointment or do a therapy-based activity with them so you can have a cup of tea. You’ll find a swag of willing helpers if you just ask!