The life of parents with special needs children is in itself a metaphor for life. It is full of ups and downs, joy and sorrow, achievement and disappointment. As a mother of a child with Down syndrome, I can tell you that we still have to face the “normal” obstacles of everyday life, like anyone else, but with an increased intensity that an added dimension brings. Throw in a little Covid-19 into the mix and it’s a recipe for disaster. BUT it doesn’t have to be.
In March of this year, as the pandemic made its way, it brought with it a sense of impending doom and uncertainty which was compounded by school closures and the lockdown. Overnight, everything came to a halt. The crucial support we depended on for our daughter’s special education needs were gone. No speech and music therapy to aid in cognition and speech progression, no facilitator to assist in learning and no school environment to aid in gaining appropriate social interaction skills.
A happy family. Photo: The Hechinger Report
I was alarmed as the truth dawned on me. How am I going to do this? I work full time from home, I have two children and a household to manage. Panic ensued and for me, that panic manifests in trying to control everything and having to constantly DO something at all times. This is not good, as it will inevitably lead to burnout.
Then came the pressure of school sending mixed messages and demand for school fees, just to add salt to an ever-growing wound. With all of these, it is easy to see how we can be consumed by worry, doubt, fear and anxiety. It can completely take over us as we envision a bleak future for our children. But in reality where does this lead? And if you think about it, have we ever really been in control? Are we able to ensure our future by sheer will? Can we 100% say that we will be here tomorrow? We cannot and never have been able to. It’s all been an illusion we have constructed.
OK, ok, let me stop there. The title of this article is about hope and that’s enough doom and gloom, but it sets the stage for something “special” parent needs to have in their armoury and that is PERSPECTIVE.
The tumultuous journey of raising a child with special needs has prepared us somewhat for a positive and hopeful attitude during these uncertain times. When our daughter from the age of four and a half months to two and a half years old was fighting for her life, we understood that tomorrow is promised to no one. We learned to enjoy the smallest things about today, to hug deeply and cherish everything.
On a general note, parents, for the most part, don’t see themselves as teachers. We see that role as separate and for someone else. As “special” parents we don’t see ourselves as teachers, therapists, doctors and the like. We are just clueless parents. And it is about time to change that perspective. Through the experiences we’ve had in the past 4 years, I have realized that no one knows better than the parents. I seek advice and study the professionals, of course, but at the end of the day if your child has, for example, two hours of speech therapy a week with a speech and language pathologist, what happens the rest of the time? If you think about it the rest of the time, your child is learning from YOU! That makes you the main go-to, the main therapist, and the main specialist.
So what can we do as parents of special needs children during this time? I always say before you start thinking of the notions of “school” and therapy, what is the environment like in your home?
All children need a home that is nurturing and in which they feel truly loved. When a child feels loved, nurtured and knows they matter, they are more engaged and willing to participate as well as contribute to the home and wider society at large given the opportunity. For children with special needs, learning difficulties and delays, keying into that engagement opens the door to learning.
So you have a home environment of love and nurturing. Next is to get organised and make a schedule. For everyone’s sanity, a schedule is a must. Why? Having a routine during a period of anxiety and uncertainty helps with boosting mental health as it gives focus and direction.
The schedule will depend on a number of factors the biggest being:
WORK – Understand YOUR schedule and responsibilities to your employer/business if you are still working, as you will still need to deliver that AND work with your child with special education needs.
SUPPORT – The more support you have the more time can be spent focusing on schooling and supportive therapy with your child.
Note there is no one size fits all here or a wrong or right way to approach this. Again, the key is to keep good mental and physical health during this time. So families need to do what is right for them specifically.
And PLEASE give yourself a break! Cut yourself some slack. Your children will be fine. Most important is that they feel loved and nurtured.