When your child is diagnosed with autism, it reminds me of a ripple, touching each person close to the child in a unique way, with those nearest to the point of impact (the child) affected the most, and the parents falling close behind.
It’s as if everything changes in an instance and yet everything feels the same.
Now you can go back to your life pre-diagnosis and in many ways; your life does settle down into a routine and resemble many things that were there pre-diagnosis but it’s different — for some ever so slightly and for others, well, it’s almost like a kick in the pants.
I admit it comes with a mixed emotions, none right or wrong. We were relieved when we got the “official” diagnosis – ASD, level 2 with global development delay — but that doesn’t meant we didn’t feel a plethora of emotions.
It’s as almost as if moments in your life are categorized into two classifications — pre-diagnosis and post-diagnosis. And it’s not hard to think of the past, the time before. That’s easy. That requires little effort. We can look back and nitpick our past, choosing to stay stuck or we can figure out what the new “everyday” looks like.
No matter the diagnosis level – level 1 (minimal support), level 2 (substantial support) or three (very substantial support) – when your friend’s child diagnosed it’s as if the doctors handed him or her a burlap sack of emotions.
“Whenever you feel like it, just reach in and pull out a emotion,” the doctor would said. “It’s the adult version of grab bag. Fun, right? And here’s half a tree of pamphlets and brochures to help you figure out what to do next.”
Now my husband and I were fortunate, my mommy gut had been telling me for a while that this was more than just “second child syndrome.” So when it came to us, were relieved and happy. Yes, I mean that … happy – at least I was, and still am. A diagnosis open doors that without are hard to budge, especially when it comes to certain therapies such as ABA.
My husband lets me do most the talking about autism, he knows I’m the communicator … I mean, hello, Captain Obvious. That doesn’t mean my husband doesn’t put his two cents about our son J’s care, he just doesn’t need to talk about it like I do. We all deal with things differently and we respect each other enough to accept those differences.
He said to me on the day J was diagnosed, holding my hand and looking into my eyes – “Well, now we have the diagnosis to get him the help he needs but you know he’s still our boy.”
That was all I needed from him to assure me it was all going to be okay because the journey we were embarking on would be and still is overwhelming.
My love language is affirmation and that was plenty to remind me that we were in this together, to find and provide the best therapies for our boy and our two other wonderful kids for that matter, if they need some extra help in an area.
So what do you do when your friend’s child is diagnosed? How do you hold space for your friend especially if you don’t know their primary love language? I mean, I think I can figure out my closest friends’ love languages but what about the special needs mom in the grocery store or that old friend from high school that’s now a dad to a ASD child?
I don’t have concrete answers as nothing is ever black or white but I do have a few things for you to consider, especially if you don’t have anyone close to you that is special needs in any form.
1. Like my husband, at the end of the day your friend’s child is still just a child, just a kid that is obsessed with lining up trains by color or will only eat chicken nuggets shaped like dinosaurs. No matter the diagnosis, remember that child probably has no idea what kind of journey they are embarking on. They don’t know they are different in some way. They l like the same things that your kid does so treat the child exactly as you did pre-diagnosis.
2. With that said, remember we all have “quirks” and we all could use a little more compassion. You don’t like it when your food touches or the sound of a loud chewer, try picturing those sensory issues magnified.
Imagine a cup, an average size tea cup – this teacup represents the amount of stimuli your central nervous system can handle in a day. Now let’s start your day. You wake up and check your phone. Pour some tea in your sensory teacup for the light on your phone, and the videos and pictures on Facebook you watch and scroll through.
Next, you put down your phone and take a shower – pour some more tea for the water and the scent of your zesty tangerine and ginseng body soap.
Your all clean and ready to tackle the day, so you step out, dry off and go to the closet. You find something to wear but the tag on the back is a bit scratchy- pour some tea.
You slip on some socks that seem a bit tight around the ankle, your shoes are worn down making your feet uncomfortable already and you’d haven’t even left the house. Yup, pour some more tea. You go to the bathroom to fix your hair, brush your teeth, rub some deodorant on your pits – pour, pour, pour. By now, your tea cup is getting pretty full. So what do you do? You do nothing, really, because it second nature. You take your shirt half off and cut out the itchy tag, you make yourself some coffee and grab a bagel, check the weather and traffic, you put up with the socks and shoes but decide to go shopping for new shoes this weekend. You go about your day. You are able to lower the stimuli threshold without thinking about it.
For a child with a sensory processing disorder and/or autism, their tea cup for stimuli is much smaller. Imagine those little tea cup sets at the toy store for kids. Now think about how many times in just one morning you had to pour tea into your sensory cup. At this rate, the child’s cup is overflowing. Just those things alone can be too much stimuli on any given day. Again, this is just the example of one child but I hope it paints a picture of what its like when our nervous system is wired differently. So how do they handle the overflow that you so easily thwarted? Their nervous system reacts differently, so they resort to stimming ( self-stimulation) by humming, rocking, jumping (all things our J does). They might go hide under a blanket or turn into a puddle of tears on the floor (especially over that scratchy tag). The child can do other things to somehow deal with their over stimulated nervous system, the point is that their threshold is much lower. So before you judge the women with the loud child humming in the store or the kids who is running in circles at the playground with no regard of his surroundings, be kind. Smile and nod at the parents, if the child gets away from the parents or has a meltdown and starts throwing things, ask how you can help. They might say nothing and be embarrassed and leave but it lets them know you aren’t judging their parenting. Believe me, if you think people judge you with a non-ASD child, get ready for judgement on a whole other level with a special needs child.
3. For any level of friendship, ask sincere questions. Ask for the full diagnosis and what it means. Don’t be afraid if you don’t know what they are talking about, chances are since their child just received a diagnosis, they don’t know much either, yet.
Ask – “How do you feel now that you have a diagnosis?” “What’s the treatment plan?” “What does autism mean for your kid?” Because you’ll never meet two people autistic or not with the same issues. And if you sense your friend is in a uneasy place about the diagnosis, tell them you are holding space for them and that they can come to you to talk with no judgement (offer this only if you truly mean it) and you can help out in any way they need. Offer to pick up their groceries if their kid is having a bad day and can’t leave the house. Take their dog to the vet for them. If the parents and the child feel comfortable enough with you, watch the kid for a few hours so the parents can have a date night.
So what about old Facebook friends, acquaintances? You don’t know their kid or them that well but you want to offer support. Again, ask about the full diagnosis, the treatment plan and tell them that they are amazing parents because they will need to hear it – often. This world will make them question everything so any form of sincere encouragement will be appreciated. If you know a ASD child, share their story with your friend but remember that what worked for one ASD child may not work for another.
And please don’t say the following, even if you have the best intentions.
“I’m sorry to hear that.”
“That’s too bad.”
“Do you think vaccines caused it?”
“Will they have to be institutionalized?”
Just be kind and open-minded. Maybe suggest a book you saw once about autism or if you are really worried you might upset your friend, don’t say anything or offer anything, just like their status or pictures of their wonderful ASD child. Just being seen and heard can be enough. Just don’t disappear if you are remotely close. It’s okay to admit you don’t know what to say but you still want to make it known you are here for them. They will appreciate the honesty because people will be feeding them “cures” for something that doesn’t need a cure – just more understanding and awareness.
I, like other ASD parents have to remember that people don’t know what to say half the time because they don’t have any experience with autism or if they do, it might be very different from what your child is going through. I can’t be mad at someone for their questions if they have no idea what autism is, because it is hard to define.
Only those living with it can truly define it. We will do our best to provide everything J needs to thrive to become a decent human being, a well-rounded citizen in society pursuing his passions in life, but really only he will know what it means to be autistic. My husband and I are just the lucky ones who get to savor and celebrate all his victories, no matter how small. Like him saying the word “delicious.” That’s a hard word for anyone to say, really, and here our J said it mimicking his older brother who had just said it about the chocolate chip cookies we had just made.
I’m no expert, if there is such a thing. These are merely suggestions but I will say this strongly – don’t disappear. If you talk on a regular basis, keep that up. If you meet once a month coffee, keep it going. Now is not the time to flea because they need you. You might not think you have much to offer but you do, God put you in their life for a reason. You might not be able to see each other as much because of the child’s new therapy routine but check-in. Do something just don’t evaporate. They need your friendship. They need you. And you can rest on that dear friend, that you are needed. Always.