Our understanding of children with special needs (which involves a wide range of developmental challenges such as autism spectrum disorder, Down Syndrome, ADHD, etc.) is still growing. This is probably why there have not been so many books reflecting on the experience from a Christian perspective. So I was quite thrilled to discover and finally read this helpful reflection from the Wilsons, a Christian couple living in London (Andrew, the husband, serves as teaching pastor at King’s Church London).
Discerning the Fact
I recall Andrew’s agonising experience when he realized his daughter might also be autistic (this was some years after the son had already been diagnosed):
“I was overwhelmed by the most sweeping, drowning sense of pain and anguish I had ever experienced, ran into the playroom, curled up on the floor, and wailed until I thought there was nothing left. It was, and still is, the lowest point of my entire life.” (p. 55)
It brings to mind how my wife and I came to the semi-official awareness that ‘something’ was wrong with our son, Daniel. We had just changed his school and the School Head had called us to discuss their observations. I think he was approaching 3 years at the time. Up till that time, he had a very limited vocabulary, made little to no eye contact, did not interact with anyone beyond keeping to his normal routine of waking up, taking his bath, eating, going to school, and returning back home. Home itself was one long absorption with TV (Barney, Bob the Train, etc) and sometimes the smartphone.
His former school had no clue something was wrong. And like everyone else, we felt it was just a delay in his development. We believed he would eventually come around.
Anyway, several months, and tests, scans, and consultations later, we had a sense of what was wrong with Daniel. He was diagnosed to have mild autism and attention-deficit hyperactivity disorder (ADHD).
From that point on, the need has been to better understand what this implies for him, for the family, and how to navigate this reality.
The Life We Never Expected does a good job of being realistic about the disappointment of having a child with special needs. Nothing prepares you for it. One moment you are rejoicing that you are now a parent—with all kinds of expectations that this child will call you ‘Papa’ or ‘Daddy’ every day; you will teach him all you know (including telling him about Jesus and how great a Saviour he is). You planned he would choose a career path and you would encourage him each step of the way as he competes with peers. Now you are not so sure how this all will play out. One is forced to come to terms with the reality expressed so well on p. 54:
“We were coming to grips with the fact that, barring a miracle, he would never take an exam, drive a car, leave home or get married.”
In a sense, I was facing “the death of our dreams, one by one—the myriad of little daydreams you have about being a parent, from sports days to holidays, graduation days to wedding days.” (p. 54)
Living through the Fact by Faith
Having acknowledged this reality, what should we do? This is not an easy question. For it is a condition you are still trying to process. And each child and family will experience this differently.
Nevertheless, Andrew and Rachel have offered some steps which every Christian family will find essential as they navigate this journey. By God’s grace, they will aid us in handling this experience with faith without sinking into despair.
Remember God is sovereign even over what we don’t understand
Probably the first question that confronts one after a diagnosis is ‘Why?’ Interestingly, this is not a unique question. It has been asked for ages. And as Andrew Wilson points out, the universal response has been that we simply don’t know:
When tragedy strikes, almost everyone who believes in God, along with almost everyone who claims they don’t, asks the same question: Why does God allow suffering? (p. 77)
We see in the gospel a God who, while not giving us clear cut answers about suffering, enters into it with us. Or what suffering is greater than the wretched, unjust, lonely, sin-bearing, agonising death of a holy God at the hands of his own vile creatures in the very universe that he created? And that is far better than the most profound rationale for suffering.
Accept your calling to parent in this unique mission field
Parenting a child with special needs requires energy, sacrifice, and patience. You often have to hold yourself back from lashing out in frustration. As the authors remind us, we must see it as a mission field, though a special one. Much emotional, physical and mental energy will be spent, but it must not be seen as effort better spent elsewhere. It is simply where God has called us to serve. And as with the woman of Bethany (Luke 7:36-50), it is an expense that Jesus finds precious.
“God wants us to esteem the field he’s given us. It’s not a tiring distraction from the true mission field we should be tilling; these are our people for us to reach and for us to be trained and transformed as we do.” (p. 39)
As we engage all the help and support we can find, enlist the assistance of relatives and friends, invest in resources and tools as needed and as are affordable, we must do so with a missional mindset. God has called us to this. And he goes along with us every step of the way.
The hope of the Gospel will help us rejoice in spite of our pain
As Paul reminds us, “If in this life only we have hope in Christ, we are of all men most miserable.” (1 Corinthians 15:19) There is a future without special-need parenting for there will be no one with special needs. It is a world in which all tears would have been wiped away (see Revelations 21:4). Whether it is the unseen and unvoiced tears of being misunderstood, or the hidden tears of a frustrated mother who does not know how to go on, the new world will be free of both.
And as we go along on that journey, God does not leave us with only glimpses of future glory. When we look at every detail of our lives from an angle of thanksgiving, even our very challenges take on a new perspective. If we believe the Biblical truth that we have all sinned and come short of God’s glory, then we know that every single thing we have is a blessing. And this is what a grasp of grace fosters:
Grace, by revealing how much I have and how little I deserve, helps bring me to a place of humility and thankfulness. (p. 84)
So whatever else my son does not do, I can be grateful that he can walk, run, play, and jump around on his own. He can read several simple words (and this is still growing); he can do arithmetic sums, recite the multiplication tables (at least up to 3 and probably 4, as at the time of writing this). When prompted, he can tell you his name and say many other things. He generally sleeps and eats well; he also cooperates well in bathing and cleaning up.
To quote the author again:
By choosing to celebrate how much I have and deciding to remind myself how little I deserve, I can sever the root of bitterness and give thankfulness the soil it needs in order to flourish, both at the same time. (p. 86)
James reminds us to rejoice when we encounter various trials (James 1:2-4). Why? This is because the testing of our faith makes us steadfast. And the experience of raising a child with special needs is itself a trial. So like all trials, God can work through it to produce patience, courage, and character in us for his glory.
Yes, we should lament the unpleasant fact. However, we also should accept our unique calling, depend on God to help us navigate the journey, gratefully receive the help he provides through therapy, support group, etc., and cultivate a life of prayer which anchors our lives on God’s wisdom.
So while it was not a life we (or any other parent) expected, through God’s grace we can find it to be one He intended for our good and his glory.
And we can rejoice today in light of that.