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| We're Silently Screaming less often these days |
It's been over a year since I wrote
A Parent's Silent Scream. So much has changed, so much hasn't. I've learned much, and I'm still learning. Now I bet many of you are curious as to how my son Will is doing. I'll save that for the end. First, I want to share some of my insights since then, offer you some helpful advice when dealing with a child like my son (and their stressed but superhero parents), and then close with the update itself. First what I've learned;
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| Not everyone loves a parade, or needs one |
1. We've gotten better talking about autism, somewhat. Let's be real, it's now "hip" to be involved with kids with autism. They're the poster children of feel good stories on the news, their special skills have been highlighted with growing pride, politicians love to use them in their election TV ads (it happened in my state and it was pretty shallow, and it still worked), and now we have an Autism Awareness Month filled with pep rallies, parades, and more of the feel good stuff. There are lots of good intentions here, and we can only become comfortable with what we are familiar with, but it's only a first step. It generates a lot of sympathy, but sympathy can be cheap and forgetful. These families need more than your sympathy. Autistic disorders are terribly complex and extremely draining. Some families have the courage to share about their struggles, others aren't. There are many reasons why, and here's one reason why...
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My son is not a victim, he is a person.
Treat him like a person, with care, but as a person |
2. Autism is not a "disease," it's a disorder. Like it or not, autism is not something you can fix like a broken leg, or you pump full of antibiotics to "cure." And I'll say this, keeping your kid from taking vaccine shots will not prevent autism either.
That's a scientific fact (link
here, and
here, and
here, and
here (that last one is a great source at that!), there is nothing to debate. My son is vaccinated and he's a better person for it). Many people treat autism like a disease; for some people say that such a child was "normal" (I hate the word normal) before "the autism" came.
When the media describes autism as an epidemic I get angry, because it perpetuates this confusion and falsehood. While autism is wide-encompassing with many varieties, this is simply part of who they are, for better or worse.
They have much to add to society (many are our mathematicians, scientists, engineers, authors, clergy, artists, and musicians). We have to start making space to welcome these people and their gifts. It doesn't mean these children can't receive therapy (for they can and they should), but it doesn't make them less of a person. They're different, and while their challenges can be beyond the pale, they're God's children just the same. Many families fear their child being labeled as broken or different, thus to be avoided, so they'll hide or minimize it. Give them some space to be real.
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| We are all unique, autistic and otherwise |
3. Not all autistic children are the same. Not all are robots, or have Aspergers, or are silent computer programers. They are as diverse as all the children and people of the world. Some are savants at math, others aren't, and some are in the middle. Some can talk your ear off, some cannot, and some are in the middle. It's easy to shoehorn children, or people with false expectations (more on that in a minute). Don't let those expectations become a barrier. Right now 1 out of 58 children are being diagnosed with a condition in the autistic spectrum, with varying degrees of severity and quirks. Get to know some of these children, youth, and their families; I guarantee you know one and you may not know it. They're worth getting to know; they're lovely, odd, beautiful, different, and great teachers.
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| I'm too cool for your anecdotes! |
3. Some people need a little advice about how to talk to a family with an autistic child. When I've shared my son's condition with parents who have similar children it's freeing, encouraging, and empowering. We all know the language, the worries, the science, and can real without pretending to be brave or wiser than we actually are. When I've shared my son's condition with other people to whom autism is a stranger, I always brace myself. I find people tend to be well meaning and want to help, but uy, sometimes too many words are said. Here's a helpful hint; DON'T REPLY WITH ANECDOTES! Why do people feel the need to share a story about someone they know with autism, or sort of know, or heard about, or read about (usually ending with a "they live a normal life now")? They say them because well-meaning people want to connect, to show they care, to give hope, and it's a knee jerk reaction. Let me clue you in, these stories don't help. EVER. These families have more anecdotes, reports, and stories than you can imagine. For every story with a happy ending that you are dying to share, they have ten more to return back to you where the end is sad and depressing. Such parents like me aren't pessimists, but we aren't dummies. We keep our expectations realistic, our hopes within reason (reason learned from experience), and we will move mountains if it would help our children (and we move them often), but there are only so many mountains to move right now. Sharing a story or anecdote can also force a parent to relive a time when they were working overtime to "fix" their child before they learned to accept the reality of what is. Reliving that frustration and pain doesn't help, obviously. What should you say then? Here's a few suggestions;
- I love you and your child, no matter what. (this goes a long way, trust me)
- If there is anything I can do to help, just call (and actually mean it).
- Give a hug. Lots of hugs. Save the words for later.
- Ask questions (even the awkward ones) and don't judge. Listen and learn. These families are often shamed into silence but are willing to share if given the grace. It's a great freedom you can give them.
- If you really want to share such a story, ask first to see if that family wants to hear it. Don't volunteer it, ask permission, but for the most part save it for a much later date (especially if you just learned about it)
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The first time my son was willing to meet Santa.
My church was willing to give my son the room for this meeting,
and he cried when Santa left because
he finally loved Santa. That's what I'm talking about |
4. Oh wait, you offered to help, BLESS YOU, but you aren't sure how? I get it, autism, it's as intimidating as hell. So how can you help these families? Give them a break. Being a parent to an autistic child is beyond a full time job. It's a full time life. Sleepless nights, countless appointments, specialists, schools, meetings, all while constantly hovering over our child or children, it's a wonder we are able to function at all! What's worse is the lack of space to go out in public because of their quirks and needs. Going to a restaurant? If the child is a picky eater, hates noisy places, is highly sensitive, and is a squirmer or a runner, forget it. Dream on. Or perhaps the child has had enough therapy to handle some of that; well the parents are on edge for most of the meal. Letting your guard down is hard to do. Going to church? The parent(s) are likely going to spend the entire time with their child, a constant shadow, denied the chance to be with their own peers due to negligence or design. They won't stay long if that's the case, because they can stay home for the same thing with less stress. The toll autism wrecks on a family is that it is completely isolating. The greatest gift you could give families with such a child is time to breathe. Are you having a family gathering and an autistic child is coming? Take the mom and/or dad aside and say, "Go get a hotdog and relax. I'll take care of you child for a while, I promise." If such a family is coming to church and Sunday School, tell the parents they don't have to stay in the kids class with them. Instead say, "I got this, go to the adults class. It's okay." Give your cell number, offer to text updates. Be willing to be educated by the worried parent who is craving such grace yet is scared to let go. Sometimes all you have to do is be their shadow. You don't have to become their best friend, just follow them around, keep them out of harm's way, and let them be. They might show you cool stuff! You aren't babysitting, you are just giving these parents a gift that is so often taken for granted which they rarely receive. Give them this peace, and you'll gain allies for life.
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I'm tired of smiling for the camera!
I don't want to be on Facebook today! :( |
5. Social media is cool but it can fool. When I shared my story on social media I was surrounded by love, which was very sweet, and something else happened. People reached out who are also parents to autistic children
and I didn't have a clue that they were! People who post pictures of their kids smiling, laughing, playing, learning, and backed up by lots of parental bragging, say what?! I also received messages of shock, words along the lines of "I had no idea!" Most of these responses came from people who I love dearly but don't have the luxury of seeing very often (geography and time), but still, have I been creating a false image of my son? Not intentionally, or wait, maybe intentionally, or maybe both. Yeah, both. Parents love to share and brag about their kids online and off, and I do too. I call it, "Our Kid's Greatest Hits Album." Like in a music album, there are great songs worth listening to, but there are always a few we prefer to skip. Enjoy the hits, skip the misses. Social media exasperates this habit. Besides, who wants to share, "My child has been driving me crazy today, screaming and yelling more than usual, and I just want to hide in the bathroom and lock the door?!" Or better yet, who wants to read it, or respond? So we stick to the positive stories, which gets the positive feedback, and becomes a revolving door where the illusion of perfection must be maintained and is rewarded with accolades and well wishes, even though it's not a truthful image.
Now does this mean we should be sharing everything? Dear lord no, some people overshare, way too much! Perhaps we should seek to be a little more honest. There are glimpses of this here and there. Don't you find yourself smiling at the pictures of almost-perfect family portrait gone wrong (a screaming child, squirmy adults, rolling eyes, falling props, etc)? It's honest, and thus refreshing. My sharing of these blogs is another step in that direction, positive vibes and angry disappointment in one, real life instead of an incomplete image that misdirects. So treat social media as just a small window into a life, and be willing to not only hear some bad news but to be brave enough to share some too, and for the right reasons.
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I wouldn't trade him for ANYTHING.
The world is a better place because my son is part of it |
A Year Later; So then, how's my son, a year later? You'll just have to come and meet him to find out! Okay, just a few teases; his language is slowly coming along, way behind compared to other kids his age but there is progress. You can literally watch his mind process out a small sentence, 3 or 4 words, and it's amazing to watch. He doesn't sing as much as he used to (except at Christmas, he LOVES Christmas for the music, and now so do I), but has a real knack for music itself. I love watching him play piano, with care and deliberation, carefully trying to play cords and in rhythm.
A great future for him may be there. He's mostly self taught.
I've been amused at church when he goes to a piano and carefully plays, and then another kid will join him and start banging. He lets them, kind of tolerates it, but you can see the look in his face, "You're doing it wrong."
He's still extremely happy and affectionate, and still gives the best hugs. It's still a very uncertain future for us, but one that has a little brightness. I hope these insights and suggestions prove helpful to you. Peace!
PS, we still love singing Blurred Lines together. Don't judge! ;) It's really one of my favorite things to sing with Will! :)
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