A couple of weekend’s ago my family was at a birthday party where my nine-year-old son was triggered by a wasp. Being terrified of wasps, he ran towards me screaming and crying. He ran past 4-year-olds more composed than himself, and their wondering parents as well.
At first, I was embarrassed, I have to admit. But really, I’ve been dealing with these kinds of behaviours since he was a baby. Large groups always bring out the worst. And that many eyes, ushers in a familiar twinge of sheepishness once again.
After I had successfully calmed my son and brought him inside, my friend whose children’s birthday we were celebrating, walked up next to me and asked me if I was ok.
Little did he know, I’d actually been having a rough day in general and the mere kindness in the question was forcing me to push down a well-spring of tears. I answered as jovially as I could muster, “Oh yes I’m fine, but I’m sorry about that!” He looked at me sternly and said, “What are you apologizing for?”…another question to thrust that pesky well-spring closer to the top. I pushed harder to keep from turning this birthday party into a therapy session. I answered, “We just don’t want to be disruptive”. To which he assured me would never be the case, he was just happy our kids were there.
I finally let the well burst open into sobs later that evening in the privacy of my bathroom. All the eyes were gone and it had been a rough day in many ways. But in that moment I was just grateful. We aren’t doing this alone, although some days that’s exactly how it feels.
I haven’t written about this because I haven’t known how to.
"We aren’t doing this alone, although some days that’s exactly how it feels."
How do I even begin to express the range of emotion these last few months have brought up for us as a family?
I don’t know how, so I’ll start with the facts. And the facts begin about 7 years ago after an awkward visit from my mom. I’ve written about it once before…but here we go again.
My son was 2 1/2 and my daughter was just over 1 years old and I was steeped in the stay-at-home-mom-with-littles stage of life. I had two toddler’s and was so new at the motherhood game that most of the time I felt like I was loosing. Particularly when it came to my son. He was challenging, but he was two. So I consoled myself with the reality that every kid is challenging at two. But one thing that was different about my son was that he couldn’t communicate. He had no words. And ever since birth over-stimulation was a genuine issue for him, making him have almost impossible to deal with outbursts. This stimulation problem brought on a severe issue with night terrors for our little boy, which made us all perpetually exhausted.
One day my mom stopped by for a visit to let me know her concerns for my boy and she encouraged me to get him assessed. I held it together, acting normal and receiving her concerns without revealing the pain vibrating inside me.
She left. And I fell apart.
She didn’t say anything my husband and I hadn’t already noticed, but he was two. And we had prayed for years for God to give us a child. Surely he wouldn’t give us one with special needs. As embarrassing as that is to admit, to my shame – in the dark moments – that's what I thought.
Fast forward to a year later. Assessment time. After many sessions, lots of paperwork and a detailed report, our boy was flagged with a broad learning disability and a few other things, autism not being one of them. Ok. We had answers. We were warned that an assessment at age 3 may not give the best results, but early intervention is the best for kids, right? That’s what we thought. Now we had a full report – time to move on.
Moving on, only meant moving into new challenges and new concerns. We experienced an elongated toddlerdom with both kids that seemed to last forever, many child development centre classes trying to teach self-regulation and speech, and night terrors became a very disruptive and serious part of our life that culminated in about 5 years of sleep troubles for our boy and by extension the rest of us.
But the real kicker was school. As soon as school entered the picture, we found ourselves in a new world of wonder that felt a lot like running in the dark. I needed to be the advocate but didn’t even know what to advocate for. Something was still missing. There was a piece to this puzzle still very much unsolved. After more school conversations, doctor and pediatrician appointments, and speech pathologist meetings, we decided another autism assessment was in order.
"I needed to be the advocate but didn’t even know what to advocate for."
Fast forward to this past March after another, this time private assessment – our son is in fact, Autistic.
There it is. Our answer. The one we’ve been fighting for, for literally years. There was a strange sense of relief to it. And yet, at the same time deep grief? What a conundrum.
We wanted the answer, just because we wanted a answer. Something definitive, something that made sense and could help us help him. Something. And yet what it means for him, is altogether another thing. What this means for him, is a complete mystery to us. But its a mystery that we’re certain involves great difficulty.
With labels comes clarity. However, with labels comes a characterization stamp that may not be true.
It’s a spectrum – this autism thing. You’ve heard the term, and probably know what that means. It means every autistic person is different. The spectrum is wide which makes the term not a cookie cutter term. And we’re still figuring out what exactly that means for our son.
But its a spectrum also in terms of this journey. It’s so many things. We’re so grateful for doctors and care workers and funding and answers and help from those we love. We’re also overwhelmed with lonely uncertainty. It’s been a rainbow of wonder this diagnosis. With layers still not experienced.
"It’s a spectrum – this autism thing... But its a spectrum also in terms of this journey."
Of course, no one can be certain about anything in parenting. There are no guarantees for any of us – regardless of special needs. And we are so grateful that our son is healthy, and not sick in a hospital somewhere. So many other families have it far worse.
For us though, it’s the little things that reveal the uniqueness of this life we’ve been given. It’s things like needing to prepare an exit strategy when we plan to be at a large gathering, because of the looming threat of over-stimulation and struggle. It’s realizing we can’t go on that road trip to visit friends, because of the turmoil it will create about being far from home for so long. It’s repeating the same command over and over, only to realize I’m using language he still doesn’t understand. It’s the many conversations had before an event where candles will be present because of the terrible fear he has of fire.
It’s trying to decide whats the right way to stretch and challenge him to grow and what is stretching and challenging him too much.
We just can’t do everything all the other families get to do and it’s always been that way. Now we know why. This has been his whole life. He grows out of some struggles right into new ones, and there’s never a break. Which makes it easy to feel helpless.
Jesus handed us the spectrum and it still feels like we’re running in the dark. Now there’s just a glimmer of light.
Actually, it’s a brighter light now that time has passed. Because not only does knowing more intimately the unique way God has made my son help him for the future, it also makes me cling to God all the more. I know for sure, that God made him, so I can’t do this without Him. I need the One who knit my boy together to help me guide and care for him.
"I know for sure, that God made him, so I can’t do this without Him. I need the One who knit my boy together to help me guide and care for him."
My boy is precious and God has privileged my husband and me with the task of raising him up. And when the pangs of loneliness rise to the surface, I know the truth. And the truth is 2 Corinthians 12:9… “My grace is sufficient for you, for my power is made perfect in weakness.” The grace of Christ is sufficient for me and for my son. God gave us the spectrum and special needs not as a judgment but a very needed grace.
"The grace of Christ is sufficient for me and for my son. God gave us the spectrum and special needs not as a judgment but a very needed grace."
We all come to Christ weak. And that’s the mysterious way the Father wants it. It’s for that reason my prayer is that both my children know and feel their weaknesses so strongly that they see their great need for a strong Saviour.
On this spectrum of uncertainty and grief and weakness…the good news is that God’s power is made perfect through it all.