A TYPE of Speaking

Once I knew only darkness and stillness… my life was without past or future… but a little word from the fingers of another fell into my hand that clutched at emptiness, and my heart leaped to the rapture of living.–Helen Keller

A couple of months ago, I had a revelation.

Josiah with his trusty iPad!

While wrestling with the fact that my beautiful little boy is still “pre-verbal” at 5 1/2, I recognized potential existed beyond the breakthrough of words. He IS in there, whether words ever exit through his lips or not. And he’s more aware of everything around him than I know.

I’ve wanted to believe he was, but in his silence or intelligible noises, at times I’ve forgotten. And doubted. And been less expressive back to him myself because I sometimes lose motivation to “chat” when it’s one way.

Somewhere while looking for clues of what Josiah comprehends within the quagmire of “expressive” and “receptive” language charts and graphs, or labeling stuff by tapping on a picture square, a chunk of optimism fell off my heart. I never thought with all the early intervention and everything we’ve thrown into this guy that we would be HERE. Less spoken words than ever, and he’s almost 6-years-old. Without words, his true intelligence is missed and misunderstood by those of us out here that don’t know how to mine for it. But oh, he has a light in his eyes and is full of joy!

When so much time, money and effort all of these years has gone into unearthing the holy grail of “progress” in my mind–“Can he TALK?”–I’ve been prompted to change my perspective of what I truly need for him. “Can he learn to communicate?” Not just “I want swing” or “I want donut” by pointing to talking pictures on his iPad. But tell us what he’s THINKING. What he loves. What he’s curious about. Or just simply in this crazy autism world of asking him the “what is it”s, I want him to be able to ask me “Why?” about something. Anything.

I watched the HBO documentary A Mother’s Courage a couple of months ago, and it ignited a new fire in me to help unlock my son’s world. (You can Netflix it if you haven’t seen it.) It featured something call the “Rapid Prompt Method,” and kids who everyone thought couldn’t learn or had very immature minds because they couldn’t talk were showing everyone what they were made of . Even the most “severe” were learning to choose and discuss topics and to write. And some were eventually learning at grade level and communicating their thoughts brilliantly. They were funny and they had a lot of things to say like the rest of us. You wouldn’t have known it from the outside that they were even listening.

The documentary “A Mother’s Courage” shows several scenes about the Rapid Prompt Method…

This news story features a kid who was “sorting silverware and doing first-grade work” the year before and just won the 8th grade science fair doing college-level chemistry after learning how to use a letter board to communicate!

Then, this documentary called “Wretches and Jabberers” came out and I hope to see it. In the trailer, you see that the adult autistic man answers the question, “So you’re saying all our assumptions about you are wrong?” He replies, “More like you than not.”

So, I’m trying yet another new thing this summer. I’m packing up Josiah for 4 days and driving 5 hours to Green Bay, WI where I found out that a lady that apprenticed under the developer of the Rapid Prompt Method has opened a therapy center. I’m willing to risk $460 to check it out. I’ve contacted three other people that have tried this with their children, and they all have said it has been well worth it.

I want to see if my boy who’s a whiz on the iPad could learn to type one day and rip down this word barrier. I want my son to LEARN, not just label. I want my son to COMMUNICATE, not just behave. Josiah attends a center-based therapy center 40 hours a week of the ABA/AVB, Physical Therapy, Speech Therapy variety. What if he learned how to spell, and he could be educated? What if he was able to gain confidence and interest in learning how to do something that made him feel valuable and like he had an outlet? Perhaps we need a little more creativity.

I’m thankful that Josiah has come so far. He’s really a delightful little boy. It’s time for him to learn how to communicate and to show off what he already knows. I continue to pray for God’s healing to release that tongue of his. In the meantime, I’m compelled to give this Rapid Prompt Method a go. I’ll let you know!

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He Thought, She Thought

I wrote this post for my church’s Marriage & Family blog, and thought I’d share it here too. Though I didn’t address it for an audience of married couples facing special needs challenges, I want to acknowledge here that I understand firsthand the strains that something like autism can put on even the best marriage. Married 13 years this August, my husband and I were pretty great communicators for the first 9 years and were always in stride with one other. When autism entered in, he and I have coped somewhat differently, and our insecurities have certainly been tapped into. Stress speaks. Even in the silences.

Our greatest challenge in the past year has been “drift.” When we realized that we both needed to carve individual time to get recharged, one of us always had to be home with Josiah. For the past 4 years we could no longer attend church together, hang out with the same friends, or take the same vacations. That has an affect on unity. It’s hard to “turn toward each other” at times when you’re simply not together as much, and when you are, you realize you’ve learned to guard your heart differently–find ways to face your realities differently. It takes work, but for the man who is a stellar father to Josiah, and who is the love of my life, I now realize why it’s so important to put your own oxygen mask on before you help your child. I want to get better at that. As they say, this is a marathon. Now to that post, “He Thought, She Thought.”

“I feel like you’re constantly judging me on a point system,” he said, paired with an eye roll.

And that started the first little “spat” of our engagement, right on the lovely sidewalk in front of roaming white geese in a quaint colonial spot in Pennsylvania.

Our intertwined fingers separated and I felt totally misunderstood.

“Sheesh! Why do you feel like I’m judging you? Am I that horrible of a person? You must not know me at all,” I retorted.

If I would have known 14 years ago that the root of almost every marital discord we would have would be summed up in that little exchange, I could’ve made much greater strides as an ideal Proverbs 31 woman. Alas, I just made the connection. Today. (And, for the record, the Proverbs 31 woman had maids, so I’d already given up that far-fetched goal.)

Shaunti Feldhahn sums it up best in her book, For Women Only: What You Need to Know About the Inner Lives of Men: “A guy’s inner vulnerability about his performance is made more intense by his belief that at all times he is being watched and judged…and perhaps found wanting. It includes the knowledge that since they don’t always know what they are doing, they are just one mess-up away from being found out.”

Conversely, in Feldhahn’s book, For Men Only, she and her husband nailed why my womanly brain ended up in a stand-off with my man’s ego: “If she’s feeling something, it’s counterproductive to try to tell her she shouldn’t be feeling that way. As men, we’re prone to jump to the conclusion that our wives are in husband attack mode. But remember a guy’s performance isn’t usually what’s on her mind. Our wives need to process their stuff by talking about it and having us available to listen…and not take it so personally.”

Women need to process feelings and discuss issues. Men feel like they have to perform and solve. Women feel unheard. Men sense that they don’t measure up. And there you have a little 9-year-old girl standing in front of a 10-year-old boy, both in adult bodies, clinging to their old innate insecurities.

She goes to bed feeling emotionally unmet. He turns off the light feeling like he doesn’t have her respect. While a reluctant “I’m sorry” or two may have been lobbed up, each adds the episode to their record of wrongs. And each secretly takes a mental note of the best ammo to use in case there’s a need to go into “attack mode” later to defend one’s self.

At the end of the day, whether it’s testosterone or estrogen at work, I think both men and women really want the same thing. They both want the other to think the best of them, to know their intentions, to call out the gold, to let the unprompted encouragements and approving glances outweigh thoughtless jabs and critical body language.

So, now that I know what I know, I’m going to try something this week. I’m going to consciously refuse to prey on the known insecurities of my husband, who I truly care about to my core. I’m going to recognize my choice—“speaking rashly, like the piercing of a sword” or realizing “the tongue of the wise brings healing” (Proverbs 12:18).

He Said “What?”!

Josiah's new glasses! He's styling.

Josiah's styling in his new glasses!

Something surprising happened. Twice. I was sitting in the recliner upstairs and Josiah was playing on the floor. I said, “Josiah.” And he turned and said… “What?” My husband and I looked at each other at the same time with that “Did you hear what I heard” look on our faces. Josiah said, “What?”! Now, that is not anything to write home about for a typical kid by any means. But for us, that was awesome because for some reason the whats, yes, and nos are hard to come by for some kids with autism. Now, we haven’t heard it since, but it’s another one of those assurances that he’s in there. He’s absorbing. We just need to unlock whatever is damming up the communication–somehow, sometime, for keeps. Tall order, I suppose, but some people do it. We could be one of those people.

This past weekend I got together with some old college friends. One of them brought her kids–a two-year-old boy and a four-year-old girl. I’m not around a lot of other kids, but the contrast between Josiah and the two-year-old who was a full year younger was so glaring. I had so much fun with the kids playing and laughing. I was doing silly voices and singing and chasing them around and they loved it! They were just drawn to me. The little girl called me the “funny mommy.” I did a lot of things that I do with Josiah, but it felt really good to get such an enthusiastic reaction back. The give and take of conversation. How my heart has longed for it! That taste of it only made me want it more.

I would love to hear Josiah say, “Momma, look a monkey! Oooh oooh ahhh ahhh.” To hear the simple acknowledgements of “yes,” “no,” “okay,” “I want…” would be sublime. But, I’m reminded to be thankful for the little victories we’ve seen recently. Josiah has been so joyful. He’s a laughing, adorable, good little guy. He even seems to be teasing us sometimes. He also has words, and I know it’s more than a lot of people get. After two weeks of wondering what was happening to him (a regression of sorts, it seemed), he’s showing us his little personality again. He’s doing better again. And, after a defiant two weeks of not wearing his glasses suddenly, he’s all over it now!

There was something about Josiah turning three earlier this month that was hard. I just wanted to see more of a breakthrough by now, I guess. Expectations by certain milestones can be hard to live up to. We’re doing so much. We want to see great gains. All of us parents dealing with autism do.

Oh, how I love my sweet little boy. I want to know him more. I want to know what he’s thinking. I want him to share with me how school went today. I want to talk and play with him for hours. I do sometimes see him whole and talkative in my dreams. I’m praying hard that those dreams will come true! In the meantime, I will purpose to unselfishly keep talking, keep playing, and keep loving him with everything in me no matter what I receive back.

I have suffered much, O Lord; restore my life again, just as you promised… See how I love your commandments. Give me back my life because of your unfailing love. Psalm 119:107, 159