The tests have been done. The evaluation complete. Diagnosis announced. Prognosis assumed.
Your child has _________…fill in the blank.
All of a sudden, you are forced to flip your life upside down to better understand it. Somebody took your rose-colored glasses and exchanged them for a pair of lenses that expose you to blinding light.
The life you thought your child would have suddenly begins to melt away like a sand castle battered by waves and it hurts. There’s an expert telling you what will or will not be true for your child. It may feel as though someone has flipped to the last chapter of your child’s story and rewrote the ending.
How do you cope with this?
Well, you have a decision to make. Let me illustrate with a story.
There were two shoe salesmen who both went to a country where no one had ever heard of shoes. The first salesman wrote home saying, “This is terrible. No one here wears shoes. I’m coming home.” The second salesman wrote home saying, “This is fantastic! No one here wears shoes! I’m going to make a fortune!”
Same situation. Same circumstance. Different perspective. Why?
Why did the first salesman give up almost as soon as he started? Why did the second salesman see so much opportunity?
The answer is the same – hope.
The first salesman had none of it and the second salesman had an abundance. Hope is a feeling of expectation – it’s an anticipation of a certain outcome. It’s the silver lining that allows us to go on in a world with so much trouble.
Without it, we are doomed. With it, we can do anything.
This is not some pie-in-the-sky-rah-rah motivational speech. I’m not promising you that you can reach the moon or do anything you set your heart to. I am telling you, very plainly, that if you do not have hope for your child’s future, you will spend your days depressed and in vain. When your child receives a life-changing diagnosis, hope is your antidote.
You can choose to look at your challenges as absolute roadblocks or perplexing mind-benders.
You can ask, “why me?” or you can ask, “now what?”
The decision to be paralyzed with fear or invigorated with perseverance is up to you.
But that’s the long road. Let’s talk about the steps to get there.
Process it at Home
The first thing is to just go ahead accept that this is a season of transition, and a very difficult one. Grieve it, it’s ok – don’t bury it – but at some point you will need to see this as your new normal and embrace the fractured blessings that come with it.
Adopt a minimal schedule or even take a few weeks off to sort through it all – if you homeschool, this is one of those times you need to cash in on the flexibility it is so prized for. As for the information – your brain can only hold so much so decide what is most pressing right now. Do that. Then once you get a handle on that bit you can add something else. For instance…
Narrow down treatment options. Decide on the course of action and only one. Pursue that until you’ve decided if it’s a fit for your family and only after that, add something new if you want. Basically you are going to have to drown out the noise and choose only the path that is right for your family right now.
As for your relationship with your child – try to stay positive. Grieve this with your spouse and on your own. Share your worries, anxieties, fears, and sadness with those closest to you and then lay them at God’s feet. But with your child – you must be his strong tower. Help him to focus on gratitude. Remind him that though he has no control over what is happening to him, he has absolute control over how he chooses to respond to it. That is for you, too, mama.
Prepare for the Outside World
When you have a child diagnosed with something – be it autism, ADHD, Sensory Processing Disorder, or whatever, you will no doubt hear some variation of these words along the way:
“But what is normal anyway? There’s really no such thing.”
The people speaking these words are usually doing so out of a good place – they want to make you feel included in a world that doesn’t understand your family. They want to connect with you. Oftentimes, they are attempting to soften some sort of blow. You know this because these words are usually spoken in conjunction with your child doing something very abnormal.
Let me be blunt here…
There is such a thing as normal, and you’re not it.
That might sound shocking but it shouldn’t be. If you’re reading this, I think you already knew that. You know your life doesn’t look, feel or function like most of your friends’ lives. Your child acts differently. Your child has “special friends” known as therapists. You may eat differently. You have different boundaries than other families do. Your child may take a slew of supplements every morning in addition to a “normal” multivitamin.
You, my friend, and your family, are not normal.
Normal is dropping your child off at summer day camp and then just leaving.
Normal is signing up for T-ball without a 30 minute “how to” briefing on interacting with your child.
Normal is going out for ice cream without inspecting every last ingredient in the treat.
Normal is not thinking twice about the sensory effects Christmas morning has on your child.
These things are taken for granted by “normal” families.
You, like me, dear, do not have that luxury. Denying it is not going to change it. But in the great words of Dr. Seuss, “Why fit in when you were born to stand out?”
Friend, the only way you are going to find peace is by embracing your new normal.
How do you do that?
Stop reading parenting books that weren’t written for you.
Stop asking advice from friends who do not have the same challenges as you do.
Stop eating the same standard American diet and trying to get a healthy kid out of it.
Stop trying to fit a square peg into a round hole.
Stop weighing your losses instead of counting your gains.
Stop thinking only the experts can help and equip yourself because you are your child’s best advocate.
Stop hiding the truth of your circumstances for fear of rejection.
Stop beating yourself up because normal isn’t working for your family.
and move forward instead.