We’ve often said that we couldn’t have scripted our life any better than God has. We’re reminded of this every time we look at our children with special needs.
It’s early in the morning and everyone is still fast asleep. I sit down at my desk and begin typing as I often do. The only sound I hear is the quiet hum of our AC unit just outside my office window. On a morning like this I’m glad I invested in an efficient system that doesn’t wake the entire house up. For the most part, it’s still dark out. The sun has barely begun making it’s case for the day.
My silent, coffee-fueled, writing morning is suddenly shattered. My 7-year old son busts his door open, sending it slamming into the interior of his room, and announcing loudly (the only volume he knows) that “It’s moooorninggggg!!!!” I jump up from my chair and rush to quiet him down. It’s no use. My two other sons are now awake. I coach him to quietly use the bathroom and then get dressed for school, hoping to preserve the sleep of my wife and two daughters upstairs. The blog post I was trying to finish will have to wait until after the school bus is cruising away from our house!
This incident may seem like nothing, and fairly normal for a kid his age. But translated over to everyday life, in public places, with complete strangers, it takes on a whole new form. The looks we get when he points at strangers and shouts questions or opinions about them tells the story using no words at all.
It used to bother us, even frustrate us. We knew he was different, but come on people, we would think, he’s a child. Then, we clued into the fact that his disconnect with social cues were the cause of something greater. My son was born with Fetal Alcohol Syndrome, also known as Fetal Alcohol Spectrum Disorder (FASD), the repercussions of an unfortunate choice his birth mother made when he was still in her womb. From that we’re almost positive that he’s on the autism spectrum. While not officially diagnosed, he displays all the signs and mannerisms.
Some parents would see this as a prison sentence, something they would always bear the brunt of or have to make excuses for. We don’t see it this way. On the contrary, we see it as a blessing…something to celebrate. We celebrate who my son is, who he’s becoming, the fact that he was born, and the fact that we get to be his parents. His beautiful life and unique perspective have taught us so much over the past 7 years.
We’ve learned how perfectly imperfect life is.
It’s not that we ever wanted, nor expected, a perfect life or perfect children. But lots of people have those thoughts before they have children- My kid will be the star of his little league team! My daughter will look like a model in her ballet class! Some hold tightly to these thoughts and almost make them an expectation later in life, only to be disappointed when they don’t pan out.
If there’s one thing our journey has taught us it’s that life is far from perfect. In fact, I’ve often said, “Our life is perfectly imperfect.” If you’ve hung around this blog for any length of time, you know how trying our journey of parenting children with special needs has been. We’ve learned a lot. But we’ve grown even more. We wouldn’t trade our crazy, messy, imperfect life for anything!
We see the world through a unique lens.
Raising a child with special needs is only a curse if you see it that way. If you focus on the condition, not the opportunity, Special Needs will always be a burden. If you see it as a gift, a unique lens you get to view the world through, it takes on a entire new existence.
I never really knew what compassion was, real compassion, until I began raising children with special needs. I’m talking about the kind that softens your heart and keeps it that way. My son has placed the lens of compassion, among other things, over my eyes. But he’s also given me a new beautiful perspective on the world around me.
We have learned gratitude.
There’s a bumper sticker that I keep seeing around town that says, “Grateful No Matter What.” I nod in my mind every time I see it because that’s how we feel about our life. Back in the day, we had our plans, we dreamed our dreams, even envisioned our future life. But all of that was tiny compared to the story God was writing for us.
We’re raising two sons who are diagnosed with FASD. Life has been far from easy. Their special needs have brought on a mixture of very dark moments and very bright moments. It’s like boarding an endless roller coaster at times. But the light that has come from them, shines brighter than the brightest star in the heavens. We are grateful…no matter what!
For You, Moving Forward.
Maybe you’ve struggled to see the positive with your special needs son or daughter. Maybe their diagnosis is beyond what you can handle, or at least it feels that way. Can I encourage you with something? I encourage you to take a step back, zoom out for just a moment, and survey the landscape. Instead of focusing on the negative (which is easy to do), center your mind on the positive. Think about the moments when your child said, or did something, that warmed your heart.
Then, lock those away in your mind, like eternal photographs, and go back to them every time the dark days arrive. It may cause you to see your world, and theirs, in a whole new light!
Question: Are you parenting a child with special needs? What have you struggled with? What has been the biggest blessing? You can leave a comment by clicking here.
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