My son's consultant teacher cut us loose this Thursday. We are currently expert-free for the first time since we received the diagnosis of Autism. Even before this momentous event, I'd been thinking a lot about the process our family went through to get diagnosed and the process that we went through afterwards. There's a book in there somewhere, I'm certain. Meanwhile, I'll be thinking out loud on the topic here on the blog.
--1--
Don't be scared, he's British!
For those of you new to this ballgame of "Special Needs," I'd like to say one thing: your whole family has changed, but don't panic! Although for the first few months you may react to those changes with the dread of the unknown, your family will change in the most normal way possible. Why? Because children change a family. That's what they do! They change it at every age and milestone, from the second line on the pregnancy test to the newborn to the middle aged kiddo introducing you to your first great grandchild and beyond. We impact one another, we force adaptations upon all the others, and we make room. That's why we're family, after all.
Just take a moment and a deep breath every once in awhile and remember that change is not dreadful, it is proof positive that everything is going along just fine. If you don't believe me, imagine the horror of a family that doesn't adapt to a new family member or to a family member's newly discovered needs. As a foster mother who has seen the results of that type of family, my imagination doesn't have to go too far. A family that doesn't change with the needs of its members is not a functional family.
Change is normal. Change is hard. Change is mandatory.
If everything is changing on you, congratulations. All family systems are functioning.
And my condolences. I hate change, too. Every once in awhile I like to push the panic button and run around screaming, "What now!? What now?! Whatnowwhatnowwhatnow?!" just to see if I can convince God that I can't handle the situation.
He's not convinced.
--2--
Brace Yourself
Although most people are nice, I'm here to warn you: you'll never once spend a night smiling into the dark at how understanding that sweet little old lady was when your kid knocked over two boxes of cereal in the grocery aisle. Her, "Oh, don't worry, honey!" will not replay in your head as you struggle to think of anything else.
Even though most people are amazingly nice (in fact almost everyone is), you are going to need some armament and thick skin to deal with the very, very few who will act like jerks. You may run into one or two in a year, but you will remember each and every one of them in surprising detail.
Yes, your child has special needs and yes part of your calling will be to educate friends and family members and even certain members of your community about the needs and the normals of your child, but it is certainly not your job to educate every busybody who gives you unsolicited advice at the grocery store. Most people are kindly disposed to you and your child. Feel free to educate
them all you want. I'm talking about dealing with jerks, people like the lady who said, in front of my son, that she'd rather die than be like him. Don't toss any pearls before the likes of these.
--3--
Why Are They Jerks?
Jerks will say things, knowingly and unknowingly, purposefully or accidentally, that will hurt you, your children, and your peace. Your main job is to shut down the interaction with jerks before any real damage is done. But first, you need to bolster yourself with some compassion for the jerk so you don't have to go to Confession afterwards.
Jerkiness Root Cause #1: Ignorance
Not every person is aware of the ins and outs of your child's special needs, so their response to a situation is merely their first reaction. They are busy trying to cope with what seems inexplicable and are truly trying to make sense of it all within a limited set of experiences. "This child just peed in the dog bowl. What kind of child pees in a doggy bowl? Brats? Oh, okay, this child is just being a brat!" It's the best they can do under pressure. Even though it will infuriate you to hear the little old lady muttering about "Kids today!" as you cope and deal with an embarrassing scene, you are going to have to find it in your heart to forgive her ignorance as you get the situation handled and your child away from her as is (super)humanly possible.
Jerkiness Root Cause #2: Fear
Some people react to disabilities with fear. Just like you and I fear the unknown, most everyone else does, too. Your child's disability looks like a Great Big Scary Possibility. They see you struggling and they fear, "What if I had to deal with a child who peed in my neighbor's doggy dish?" They want to distance themselves from what they fear. Most of the time, they do it verbally, "I would never want to live that way!"
Most jerks don't mean to be jerks. Some even mean well, but the longer they interact with you, the more harm they do you and yours in their blundering. You need to shut them down or get them away from you as quickly as possible.
Here's a bag of tricks...
--4--
Cultivate a Look
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| This'll freeze water. Cultivate this. |
You will need to develop a look that says it all, "You've crossed the line/mind your business/how dare you/I have no idea what you just said to me but I'm sure if I even had the time to listen I wouldn't want to hear it anyway." Think Lady Violet. Practice it in the mirror. You don't even have to shoot it at anyone, just allow it to come across your face before you purposely school your features and grace your children with a smile. Most of the time, that is so impressive it will do all the work for you. They will leave you and your children alone.
Sometimes, though, you get the stubborn jerks who are so self-esteemed they can't take a hint. For them you need heavier artillery.
--5--
The Verbal Shutdown
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| "Set phrases to stun." |
Think about the worst case scenario for any public outing and then have a handful of responses to answer problem people. You'll likely already be flustered by the time the hissed, "Brat!" or "Freak!" comes flying at you, so it helps to have these responses on automatic. You can joke, "We're using the Spock and McCoy parenting method; all phasers on stun, kids!" You can wield the Politeness of Death (best used with a heavy Southern drawl and a hat), "I don't know what I'd do without your stellar insight into my personal matter! I just can't thank you enough!" Brutal honesty, "I'm at my wits' end at the moment. This chatter is distracting. Please move along." Or the kinder approach, "Please, excuse us. Sorry for your inconvenience." I tend to use that last one the most. It is the go-to phrase that works in almost every circumstance.
You already know what situations are likely to develop when you go out into public. For example, our family just might have to use the bathroom (we do that). When my son was six and potty training I was not about to let my nearly nonverbal Autistic son go into a public men's room alone, so I donned my patent pending Look before I ever set foot in the Ladies Room, and just in case that wasn't enough I was braced and ready to respond with, "If you have any complaints about our using the restroom, ma'am, the manager's office is at the back of the store."
P.S. He's 7 now. Remember that business of families having to change? Well, by his birthday we had already scoped out those stores with a Family Bathroom and now we make sure to exclusively go there.
--6--
You need one. You have to be able to do things. Train up willing family members first, then train a few willing and responsible young people, and if you are really lucky, make friends with other families with the same special needs as yours. At any rate, if you are training family members or paid babysitters, the process is the same and I describe it
here. It was expensive to train up my babysitters and it is expensive to use them, especially if you are at the stage of needing two sitters, one for your child with special needs and one to watch the other children in your home. That's part of your family's "normal" and that brings up the final take on special needs parenting...
--7--
Social Settings
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| When I envision Hell... |
Whether it is dealing with gear, packing medications, or potential exposure to allergens, socializing is going to be one of those ways your normal is going to look different from other people's normal. I know that it is a much bigger deal for me to take all my kids out in public than it is for friends with even bigger families than ours. I have an attack plan and backup contingencies and at least twice the time allotted for the job. I have stores and restaurants I can not take my son into (yet) because of the noise levels. Our whole family can not go to a movie (yet). We're working on it. We went to Daily Mass for a year before we were able to finally sit through a Mass en masse.
When I say "we're working on it" I mean that we're still practicing. I highly recommend training yourself and your children how to do something so that you know how to do it. That works for everything, even shopping and going to public restrooms. Practice going to the store just to buy gum. Practice visiting a friend and stay five minutes. Practice makes perfect. Don't tell my kids, but we actually practice going places with no agenda other than making it out alive. Some weekends there's no real reason to pile into the van and hit the pet store other than we want to go someplace, be successful at it, and come home with the reward of a $5 bag of pretty new fish. If it doesn't work out well, we just leave. No big deal. The fish will still be there next week.
Because Autism is in big part a series of deficits in social skills I have to keep a closer eye on my children at any social gathering. Unless my husband is with me and we're tag teaming, while attending a function I'm not talking with anyone for long, and I'm not relaxing. If I look relaxed it's because I'm working very hard to look relaxed. I relax at home, where the variables and potential problems are more familiar.
Feel free to hang out with me there anytime.
Finally
I hope I haven't scared you at all. This is actually fun, this whole parenting thing. I can't imagine what else I'd do with my day and my God-given talents, can you? Life without meaning is meaningless and with your faith and with each child, we have that meaning. With special needs, you have even more.
Here at the end, I'm going to give you my most important piece of advice. This is the one that gives you the perspective on all the joys, trials, tribulations, laughs, and loves of your day to day life as a special needs mom: your job is to ensure each of your children is ready for eternal life. Though you may worry about college, The Future, next week's trip to the Pediatrician, remember Heaven first; everything else is details. This disability your dealing with? It's all part of the package. You, your children, your spouse are all that much closer to Heaven each time you smile and find some humor in your day to day life. You may not know this yet, but as extraordinary as the details might get, every life is ordinary. God loves the ordinary as much as he loves the color blue; He made tons of it. Relax as the "new normal" takes shape around you and remember that it is in the routines of your everyday life that you will find your treasures for Heaven.
Family life was so special, He reserved over 30 years of it to enjoy for Himself. Don't forget to enjoy yours.
Love your kids. Love your life. This is what it is all about. If you've been given a child with special needs, it's only because God wants to turn you into a special parent. Brace yourself. It's about to get awesome.
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