Our story so far
It was December 2018 when my four-year-old son was first referred to the ASD (autism spectrum disorder) pathway. And I have to admit that I didn’t understand a whole lot about this process at the time.
But I came away from that first assessment feeling quite anxious, and with so many unanswered questions. What might this mean for my son, and for our family in the years that followed? Would he be held back in his education and learning? And would he struggle socially, or in some other important aspect of his life?
Having your child flagged for any kind of potential SEND needs can be extremely unsettling as a parent. And so I did what most mums would probably do in that situation; I consulted with google, only to end up confirming all of my very worst fears!
But the truth is that as a parent, all you ever really want for your child is for them to enjoy a normal, healthy, and happy childhood. So when you’re faced with any suggestion of something otherwise, it’s really easy to jump to the worst-case scenarios and start catastrophizing…
After the dust settled
Initially, I felt lots of conflicting emotions; anger, disappointment, confusion, denial. And I felt quite fearful too. I just really didn’t want the weight of a label, or the stigma of being different, to be placed upon my son’s life.
But in the weeks and months that followed as I reflected on the situation, and as I talked to other friends with children on the pathway too, my perspective began to change…
I began to appreciate more of the beauty in who my son is, and how he was made. I also began to notice more of his strengths, rather than just focusing on his weaknesses. And I started to think about his differences as a good thing, rather than something just to be feared.
As a parent, it’s so easy to get sucked into comparing your child to other siblings or to their peers at so many different stages, isn’t it? Who is sleeping better? Who is walking first? How early did your child master toilet training? How soon did they learn to write, read, or swim? The list could go on and on…
But the thing I’ve learned about comparison is that it’s just a massive joy robber and a horrible anxiety inducer
But the thing that I’ve learned about comparison is that it’s just a massive joy robber and a horrible anxiety inducer; especially if your child is facing any developmental delays. There’s really no gain to be found at all.
Because comparison is always about measuring two intrinsically different people against each other as if they were ever created to do the same thing. And since we don’t constantly do that with adults, why do we do it with our kids?
I truly believe that there is beauty in diversity. I believe that to the very core of my being. I thank god that we are not all just robots, programmed to function exactly the same way since that would make the world a very dull place.
But isn’t it interesting that when this idea is really tested in our own kids, for whatever reason, it’s somehow harder to stand firm on that truth?
Grieving the life you expected
As a society, we are still just only beginning to learn and understand more about how different people’s brains function in slightly different ways, and how that affects their learning styles and how they experience the world.
Imagine living in a world where we didn’t need to put labels on children who think or behave a bit differently, because it was just inherently understood by parents, by teachers, by schools, that not every child fits exactly the same mold, or behaves in precisely the same way.
Sadly, as a society, we are not there yet. In fact, we are not even close. And so I recognize that right now a diagnosis can be a helpful thing in terms of ensuring that a child isn’t just labeled naughty, struggling through their schooling, or left feeling misunderstood.
My husband is a great case in point. He was only diagnosed with dyslexia in college at the age of 17, despite struggling with reading and writing for most of his school years. And he says that has his needs been recognized earlier, he might have found school less stressful and enjoyed learning a whole lot more.
I know all of this, but even so, at that moment when I was first told that Ben was being put on the ASD pathway, I still felt like crying with disappointment. And looking back now, I think it was the fear of the unknown.
In the days and weeks that followed, I had to begin to adjust my thinking to accept and celebrate the child that I was given, rather than wishing he would behave a bit more like everybody else… (whatever that even means!)
I needed to give myself time to grieve the kind of motherhood I expected to have
And even though it still feels slightly horrible to admit it out loud, I needed to give myself time to grieve the kind of motherhood I expected to have, and find the grace for adjusting to our slightly different, new normal.
Embracing the child you have
The truth is that my son’s life is a miracle. Medically speaking, he could have died at several different points during my pregnancy and birth. And so my husband and I feel incredibly grateful for his life every single day.
But I have also spent a lot of time during the first five years of his life worrying and googling and waiting for referrals and attending appointments with my son, rather than just enjoying my motherhood, and that can begin to take its toll…
So when the ASD referral first happened, it initially felt like, ‘Seriously? Not another thing!’ But I no longer feel that way. Because at every single step in his development this far, my boy has exceeded all expectations.
As a baby, he was referred for an MRI scan to rule out the risk of brain damage caused by complications during my pregnancy… but everything came back clear.
As a toddler he was given physiotherapy because he was slow to walk and showed poor balance and coordination… but now he never stops moving and we can’t hold him down.
At age three he was referred for speech and language therapy as his talking was very limited… but he was discharged from the service soon afterward, and now we can’t shut him up.
And last year, in his pre-school nursery setting, he was placed on a learning plan to support his social and communication development… but by the time he left to start school a year later, he was hitting all of his key milestones (even despite a referral to the ASD pathway).
And do you know what’s more? All of my googling, fretting, stressing, and worrying, and hoping for something different, never changed a thing!
Parenting with intention
The fact is that god in all his wisdom has specifically entrusted this precious little boy to me (and his dad!) to love and look after, and yes to advocate for at times when he needs us to. What an incredible privilege!
And so what, if this means that I have had to learn to put aside some of my own preferences and parent in a slightly more flexible way?
Effective parenting means learning how to constantly pivot and adjust our approach along the way…
You may not have a child on the ASD pathway like me, but when it comes to parenting there are so many different things that you can end up feeling slightly blind-sided. Effective parenting means learning how to constantly pivot and adjust our approach along the way…
Friends with two or more children, often tell me how each one of their children is different and that what works for one sibling, often simply doesn’t cut it for the next. They have to learn to parent each child as an individual. There simply is no one size fits all for parenting your kids.
This is true for absolutely all children, but perhaps even more important for children with SEND needs or ASD traits like Ben. And I don’t want to make light of how difficult some of this pivoting and adjusting can be.
I also recognize that autism and other special needs can cover such a wide spectrum of conditions, and such variation in terms of the level of challenge posed. I can only really speak out of my own experience, and my son is not on the most severe end of this spectrum where those needs can become very complex and difficult to manage.
But what if some of the biggest challenges that we face in parenting, actually turn out to be some of the greatest lessons or gifts in our lives?
And what if some of the biggest challenges that our children face, turn out to be interlaced with their unique purpose and gifting too? Our strengths and weaknesses can so often turn out to be two sides of the same coin.
Where we are now
A couple of weeks ago, just over fourteen months after that first assessment, my son was reviewed by the same doctor at Alder Hey Children’s Hospital again. (Yes, that’s 14 months; the waiting lists on the ASD Pathway are incredibly long!)
But this time the conversation with the pediatrician felt strangely reassuring as he explained the next steps in the process, which I think was indicative of a shift inside me, as much as anything else.
Over the coming 12-18 months, Ben will most probably be invited to several assessments with a panel of professionals, and information will also be gathered from his school. And after all of that, they may or may not decide on a conclusive diagnosis for Ben for any of the conditions that sit within the autism spectrum. It all depends if it’s felt that a diagnosis would actually be helpful in supporting him at this stage.
I have also learned that the pathway is open-ended. So even if no diagnosis is made, we can still choose to keep him on the pathway and request further reviews in the future, as he gets older.
But ultimately, I feel pretty relaxed about whether they settle on a formal diagnosis or not. Because whatever the outcome, it doesn’t actually change anything about Ben. I adore my son completely and whole-heartedly, exactly as he is, and I would not choose to swap anything about him at all.
This is an updated edition of a post originally published on Anna Kettle
Featured Image by Anna Kolosyuk on Unsplash
