My wife and I had our fair share of fretting and frustrations, and even as I write they haggled us and would keep on haggling us for as long as parenting endures. As it is declared in marriage vows, the same can be spoken of parenting; it goes on till death do you part.
If you are a new parent of an infant with Down syndrome, this post is for you.
We cannot deny that the woes and worries of parenting intensify when your child has special needs. Yet in our journey with our son, Amos, we learnt that there is something we could do about them.
We could manage them.
This involves getting the nasty bits out of the way and building up a kind of resilience that might take us further in life than we would ever go. We aren’t experts and we are still working on it. But allow us to share five insights we found useful, and we hope would positively kick-start your parenting journey.
ONE: You cannot control everything
But you can respond to them. Medical science explains the genetics behind Down syndrome but it does not say why or how it happens. Then there are the stuff you wouldn’t know until you get there; the child’s development, underlying medical issues, people’s reaction to the child’s condition.
Acknowledge and anticipate the situation, be prepared for it, but never, ever let it leave you feeling feeble and helpless. Thinking too far ahead and being helpless about it breeds undue anxiety and makes a neurotic out of you.
Instead, you could respond positively to it by resolving one thing at a time and as it comes along. Keep in mind that amid the sea of uncertainties you are in complete control of something: Yourself.
TWO: You are going to be different
We have experienced how detrimental it was to hold on to the mirage of a life we envisioned before Down syndrome came into our lives. It wasn’t just Down syndrome per se, but life itself is fraught with uncertainties, and the harder we cling on to something imaginary the more miserable life would appear.
Your life journey is going to be vastly different from that of your relatives, friends and colleagues. Doors will open to reveal unexpected opportunities; fresh experiences will come your way, and you will learn strength you never knew you had. Accept this fact, manage your expectations, and your emotional rebound is just round the corner.
THREE: Don’t sweat the small stuff
There are tons of things in life that demand your attention; perfecting a skill, cleanliness, fussy dressing, colour choices, petty bickering, and so on… You’d crack up if you strive to give them all your fullest attention. In the course of caregiving the last thing you want is a burnout. Burnouts trigger depression. Depression leads to despair and there is no telling where you might go from there.
It takes a great deal of effort to shrug the small stuff off your shoulders, especially those that used to define you in the past, but it’s an immeasurably crucial step because it lets you channel your energy to where it is most needed and prevent a burnout. You’d be surprised at how much easier life could become.
So – let it go.
FOUR: Don’t Compare
We have all heard of this. But you might not realise how quickly you need to put away thoughts before they start seeding bitterness inside you. You might have heard that a cousin just gave birth to her third and healthy child, or a friend’s child made it to a top school. Perhaps you’ve heard from your therapist that your child’s physical development is at the lowest percentile of the Down syndrome chart. You’ve just found out that a colleague spent thousands on an exotic vacation while you spent the same amount on a recent surgery for your child.
In such instances, having tunnel-vision might turn out more benefits than you expect. Augment your resolve to screen off thoughts that are detrimental to your mental well-being. Do it often enough and they will cease to bother you. Remember, you are in a different league altogether, and any attempt to compare your situation with that of others is biased and superfluous.
Take your child’s development in her stride. As with many congenital conditions, you simply cannot rush the attainment of milestones. One individual with Down syndrome might display no cardiac problems. Another might have multiple heart defects on top of a slew of cognitive issues.
So turn neither to the left nor right, but forge on ahead with faith and fortitude.
FIVE: Don’t forget the Inflight Rule
Take care of yourself first! You are a parent, not a hero or a martyr, so don’t you go around sacrificing yourself unnecessarily at the expense of your child and family. Do your utmost in caring for and developing your child. Spend time to work her muscles and her speech. But only when you are up to it. Otherwise, go vegetative for a while, take catnaps, get your coffee, have a day off; do what you must to get yourself back in shape for the next haul.
Remember what they tell you on flights: put the oxygen mask on yourself before putting it on your child.
There is a lot of sense in that.
So there you have it; our five humble insights that we hope could help you as much as they have helped us. Special needs parenting is a task demanding great skill, patience and discipline; and as with any skillset, mastering it involves only three requisites: practice, practice, practice.
And just like you, we are still practicing.
You mean the world to your child and your family needs you to be the strongest you could ever be.
So draw a deep breath, perk up, and soldier on.
Photo credit: by winnond at freedigitalphotos.com