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It was just a Facebook post…

June 15, 2013 By 1 Comment

… but the words I wrote there keep coming back at me.

 

Never thought about this passage before with these words substituted, as a “concerned” mom sending her son with autism to college in Aug:

“And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, He will certainly care for Dan. Why do you have so little faith? So don’t worry about these things, saying, ‘What will he eat? What will he drink? What will he wear?’  These things dominate the thoughts of unbelievers, but your heavenly Father already knows all Dan’s needs. Seek the Kingdom of God above all else, and live righteously, and He will give Dan everything he needs. So don’t worry about August, for August will bring its own worries. Today’s trouble is enough for today.”   Jesus, in Matthew 6:30-34

 

We are now on the “other side” of high school graduation by just a few days, and I got through the ceremony without a meltdown! Our speaker (Peter Overby of NPR fame) said, “Be in the moment,” and I wanted to listen, tune in and absorb every speech. I wanted to enjoy the music and being surrounded by friends and family, instead of being preoccupied by my own emotions.

 

The personalization of the above scripture helped center me and distance me from my worries. I could savor the event, the milestone, the awe of his accomplishment, without a hint of angst. I’m keeping this one close to my heart. God knows I need it.

Before diploma

 

(Beacon College-bound) Danz proud mom, Peggy

Contact: Peggy@chosenfamilies.org

 

 

 

 

 

 

Filed Under: Anxiety, Autism, Bible, Uncategorized Tagged With: , ,

Lost in Translation

June 4, 2013 By 4 Comments

This week I had an uncharacteristic “panic attack.” Not in the clinical sense, but in the “I’m on the verge of worry-tears any second now” sense.

I have a no-nonsense, bottom-line, cut-to-the-chase personality. A little abrupt at times, which served me well as a Naval officer, but parenting a child with autism? Not so much.

I’m not prone to excess emotion, but not cold either. Some really neat people like me, and I take great comfort in that. I love apologetics. I’m not a wringing-of-the-hands worry-wart. But my SON, our one-and-only child, is graduating from high school a week from Wednesday. And after a one-hour choir practice of singing God’s praises and affirming His sovereignty (“Who holds the winds in His hands? Have you not heard? Do you not know?”), I found myself shaky and nervous and downright worried in the church parking lot.

Being the analytical sort, I asked myself, “Peggy, where is this coming from?” And it took me awhile to figure it out. NOT that he’s moving from DC to Beacon College in FL. Not the empty nest thing …. Could it be a loss of control thing? Am I a control-freak in lamb’s clothing? Casting about, I recalled the story hubby told me the day before that I think was the root of my almost-tears.

Dan had a technology assist visit with the VA Department of Rehabilitative Services to be introduced to apps he could use on his iPhone and iPad to keep him organized in college. This was a good thing! They had contacted Dan directly, and we advised him how to reply and when to set up the appointment. So naturally, Jim dropped him off for a one-on-one session. It was scheduled to last 90 minutes, and Dan was supposed to call his dad when he was finished. Jim got the call in 30 minutes. Bad sign. And the DRS advisor was waiting to talk to him.

Dan would not cooperate. He kept coming up with reasons why he did not want the apps. He didn’t need an electronic schedule, he always used a printed agenda in high school. He had told her the apps might be too expensive, but refused even the free ones. She was gentle and persistent, but he was adamant, and NOTHING was accomplished. Unable to make any headway at the scene, Jim talked Dan through it on the way home, and it turned out Dan was worried about the apps taking up too much room on his device that would limit the number of movies he could download! If Jim had been in on the session, he could have sussed this out of him on the spot, but Dan couldn’t communicate his concerns directly to the counselor. Jim needed to be there to TRANSLATE – we speak his language – but we’re not going to be “there” anymore. And I started to splash around in worry. How many misunderstandings will there be? How will he be able to communicate? Then I guilt-tripped that I was sinning by worrying!

I don’t know if I’m over this yet; after all, graduation is looming ever closer. It helped a little just to identify the source of my worry. And I DO know Who holds the winds in His hands. And a dear friend’s words keep reverberating in my head (words written by Emily Colson who got them from a dear friend): “Peggy, God speaks Dan’s language.” And, oh my soul, He’s the BEST translator.

 

~ Danz Mom, Peggy

Filed Under: Anxiety, Autism, Trust, Uncategorized Tagged With: , ,

Costume Change

May 30, 2013 By Leave a Comment

On the day I was married, my mother doled out plenty of marital counsel. She’d have done just as well to summarize marriage thusly: “My child, there will be laundry. So much laundry.”

On any given week, I wash ten loads of laundry. More, if the sheets need to be done. More still, if Noah has led our children on the charge of “let’s have an adventure!” which inevitably means they’ve snuck down to the creek in search of the property’s dirtiest, wettest spot so they can bathe in it like natives. Country living is good for the soul. But it’s torture on your power bill.

All in a day's work.

All in a day’s work.

And then, there’s Noah himself, who performs more daily costume changes than Liza Minnelli at the Garden. Every child with autism is different. Each of their quirks is unique. For Noah, clothing is a major issue. Of pre-eminent concern is comfort. Many children with ASD have sensory issues, and for some, the least obtrusive clothing label can feel like a pad of steel wool against their skin. These items of clothing are worn for brief periods of time, and then Noah “discards” them in the laundry. Or, it can be that Noah decides the yellow tee shirt he put on didn’t look as hip as he’d hoped. This one is tried on in the full-length closet mirror and then thrown under his bed. And as all-boy, dirty-toenailed, hayloft clambering as he is, he REFUSES to wear a pair of pj’s more than once, considering it repugnant. I’ve tried laying them back out on his bed after he gets dressed, sneaking them back into his drawer, putting them on top of his towel before he gets into the shower. Nothing works. And this doesn’t even count the nights when he is too hot (change of pj’s – rather than simply kicking off the covers), or too cold (layer on every single pj he has, only to dump all of them in the laundry the next morning). If I had to estimate, I’d probably say 6 of the 10 loads I wash each week are Noah’s alone.

Like every appropriate behavior sought for our children, there is only so much doing, telling, showing, cajoling and begging we parents can do. Such is every parent’s fate, I suppose. In the end, Noah’s quirks with clothing are his, alone. So I have to be content to bite my bottom lip, and count the days until Noah’s old enough to remember where in the machine the detergent goes.

- Sarah

Contact: Sarah@chosenfamilies.org

Filed Under: Asperger, Autism, balance, Challenge, Parenting, Uncategorized, work Tagged With: , ,

Seeing Red

May 16, 2013 By Leave a Comment

Jesse has an infatuation with firefighters. And, for that matter, fire trucks, fire engines, and firehouses.

Not unusual, you say? Little boys love firefighters, policemen, army men, you add? True. So, let me elaborate a bit.

He’s had 2 fire-themed birthday parties, dressed as a firefighter for 3 consecutive Halloweens, owns 4 fire fighter costumes, 1 fire fighter umbrella and raincoat set, 4 model fire house sets, 22 fire engines and 31 firefighter figurines of various size. Each day, he methodically lays out his firefighter costume, invites me into his “fire house” and shows me his gear before suiting up. We have made no fewer than 6 impromptu stops at fire stations we’ve passed on our journeys, and have waylaid something like 10 firefighters from their very real duties in order that Jesse might sit on one of the engines, wear a helmet, or ask “where is your black and white fire dog?” (He’s been often disappointed to learn that Dalmatians are mostly relics of a by-gone firefighting age. If he sees a Dalmatian in his firefighter story book, he LITERALLY expects to see one at the fire house. That literal nature? Yep, that’s ASD.) There are even firefighter coloring books, firefighter pajamas, firefighter DVDs. For a period of time, all Jesse would watch on television was a 1987 firefighter training video we were able to stream through Netflix. He could recite it word for word. It started out as cute. Sometime after viewing 15, it got downright annoying. He had all of us, and PARTICULARLY his older, emotionally labile brother Noah with ASD himself, seeing red.

As you’ve probably guessed by now, a restricted or limited interest (one that plays out in real life more like an obsession) is one of the hallmarks of an Autism Spectrum Disorder (ASD). These are kids who know every Star Wars character ever introduced, or who can name every dinosaur that ever trod the earth. But I was surprised to discover recently that the MORE restricted the interest, the HIGHER the anxiety – that the latter often incites the former. http://ultimateautismguide.com/2011/06/autism-news-anxiety-restricted-interests/  And, with anxiety being the defining emotion of Asperger’s and other ASD’s, it goes to reason that these kids are destined to experience both – some, more intensely than others. I thought Noah was one for restricted interests, but my sweet Jesse has shown the capability to outpace him red engine for red engine.

This morning, I walked into Jesse’s room and found yet another pile of engines and figures to be re-shelved:

Just a small selection.

But this time, instead of seeing the mess, I HEARD what he was saying. So I sat down.

“Can I visit your fire station?”

He grinned, freckles and dimples squinched up. “Yes. Yes, you can.”

Then I asked Jesse why he liked firefighters so much.

“Because.”

“’Because’ is not really an answer, Jesse. Why do you like them more than anything else?”

“Because they put out fires and save people.”

They “save people.” I exhaled, and squeezed my arms around him. I will do what I can, with God’s help, to make him feel safe and ease his worried mind.

And in the meantime, I suppose there are worse things he could be interested in.

- Sarah

Filed Under: Anxiety, Asperger, Autism, Change, Family, growth, siblings, Uncategorized Tagged With: , ,

Organization and ASD

April 22, 2013 By Leave a Comment

lightbulbI just got back from an informative weekend conference on Autism. I heard from many experts on many subjects. One of the experts that I appreciated the most – kids with autism. There were some children who chose to attend the conference themselves, most between the ages of 10-22. I heard from these kids when I attended a breakout where they had the opportunity to introduce themselves and talk about a time when they had the opportunity to be a self-advocate. If they didn’t know what that was yet, they took a pass and then the rest of the session was spent talking about what that meant. I also got to hear three kids ages 10, 13 and 14 present during a breakout called Talking About My Autism. I was touched by so many of the things they said. For the purposes of this specific post I will narrow in on one girl, age 14, and one of her comments in particular:

“Organization is hard for me. When I was little I’d dump out my toys and then I’d be too overwhelmed to clean them up.”

Wow, this is my son! Light bulb… over my head! Ding ding ding! You know, I’d heard this before – that organization is hard for kids on the spectrum. But you kind of undermine that when they are still young (my son is 8 now). When I think about organization in terms of children I think about their schoolwork, getting it home each day, remembering to return it, library books, keeping track of mittens and hats and boots at school, and so on. And let’s be honest, the requirement for organization is much less enforced when they are young.

When she related organization to her toys and how she gets overwhelmed when she has to clean up, I was really surprised. Sometimes us expert moms – we just really need an expert kid to set us straight! =) My Owen shuts down when he has to clean up his room, he cannot break that job down into parts. When I look at his messy room I think ‘no big deal – this is doable’. Start with all legos, then do your books, then throw away papers, then pick up crayons, and so on. But he just sees something all together different and he becomes paralyzed.

And he often plays differently than his siblings – I find that he’ll take toys out and use the parts to create things (mazes, games, a BIG mess!). I’m going to head into this next summer with a different outlook – keeping in mind how Owen plays differently (because that can sometimes be the start of some neighborhood and sibling squabbles). I’m also going to keep in mind Owen’s struggles with cleaning up and I am going to use whatever strategies are necessary to make that easier for him – visual schedules, checklists, etc.

I highly encourage you to take the time to attend trainings or conferences from time to time. Once a year really would be very beneficial to our children. When their major support systems are refreshed, reminded how their children process their world, and taught or sometimes re-taught the strategies and tools that can help them to be successful – our children are that much more able to flourish!

Kara

 

 

(Image courtesy of Soilbedust/FreeDigitalPhotos.com)

Filed Under: Autism, Uncategorized Tagged With:

5 Lessons from My Son with Autism

April 15, 2013 By 1 Comment

Autism Awareness Month causes those of us in the autism way to reflect on the uniqueness of our journey. Here are five invaluable lessons that my son Jude has taught me:

1. Being an autism parent is hard, but it’s not that hard.

God has given autism parents a special burden to carry. It is a hard road to walk. We spend months, even years, mourning the loss of our expectations after a diagnosis. But at some point we need to stop throwing our pity parties and realize that it isn’t that hard. We parent kids who have unique gifts and unique modes of intelligence. Sure life in the Hutchens house is hard. Nonetheless, you cannot quantify the abundance of joy Jude brings to our home. Joy outweighs sorrow, and the sorrows accentuate the joys by their contrast.

2. We communicate more than we say.

Every instructor in public speaking cites the well-worn line that 90% of communication is non-verbal. However, I never appreciated that until I had a non-verbal child. Jude says so much without ever saying a word. His smile when seeing you says “I love you” with one-million exclamation marks. The concentration on his face while playing with his VeggieTales toys communicates a fierce enjoyment of life. What we say with our words means much less than what we say with our lives.

3. Righteousness often doesn’t feel very righteous.

We used to live down the road from a monastery. The men there abandoned earthly-pursuits in order to live a life of righteous devotion to God. However, I tend to think that true righteousness cannot exist in separation from the world and genuine human relationships. Living a righteous life feels more mundane than it does sacred. Sometimes people comment about how much they have learned from our example of lovingkindness and patient forbearance with Jude. Truth be told, in public with my family, I often feel frazzled and on-edge. How God communicates his love and patience through me at such times, I don’t know, but he seems to do it. When righteousness shines through mundane lives, God gets the glory.

4. We need to be honest about our ambitions for our children.

We all know the parents who treat tee-ball like it is the seventh game of the World Series. Such parents are attempting to re-live their glory days through their kids. But let’s be honest. We all do the same thing in whatever area we value. I’m a learner, reader, and speaker. Before autism, I dreamed of giving my children an education full of language learning and the classics. After autism, I had to ask the question, “How much of those ambitions were about me?” We must be careful to make loving God and loving neighbor our highest desire for our children.

5. Every life reflects the image of God.

Disabled is not defective. Unfortunately, due to the technology of prenatal testing, countless disabled children today are never given the chance to live. Why? Because expecting parents see their unborn child’s disability as a defect. Parenting such a child might as well be a death sentence, the end of life as they pictured it. Certainly, a diagnosis like autism or Down syndrome will shatter your expectations. However, every gift from God is good and perfect (Jas 1:17). While Jude may have a disorder and while he may qualify as disabled, he is in no way defective. Take one look in his eyes and you will see the signature of his Creator. I cannot communicate how fortunate I am to father a child over whom God has spoken, “Mine!,” and in whom God has embedded his own image.

Thank you, Jude, for all you have taught and all you are teaching your daddy.

(Joshua)

 

Filed Under: Autism, Uncategorized Tagged With:

Everything and Nothing

April 4, 2013 By Leave a Comment

Autism awareness month, which began on Tuesday, means everything and nothing to someone who is living with it first-hand.

It means everything in that it pervades every moment of every day. Autism is something of which I am already aware: it is an experience from which I do not get a break, and therefore its call to recognition by those in positions more visible than me, means everything. It is the silent question behind the taunting kids at school (“is it because Noah’s different?”), and the quiet realization behind every self-stimulating behavior of Noah’s. It is the “oh, he must be overstimulated,” or “there are too many people here,” or “he does not like the feel of my hugs” thoughts. It is everything in every moment of every day with my son.

Which means it is also nothing. It is a part of Noah, and not the whole. It is the “this is what he has, not who he is,” and the “I don’t think I’d want him any other way” ideations that rattle through my heart each day I spend with him. It is the refusal to make excuses for him, and the toeing of a hard line, and the working to make things the best they can possibly be because an ICD-9 code and the DSM and the XYZPDQ’s don’t have a clue what he’s like in real life. It means nothing because I feel the Lord has called Noah to something great because of what he’s been dealt, and in spite of it. It is nothing he cannot handle, and apparently nothing I cannot handle, despite what my weary eyes and aching hip joints told me this morning.

It means something, though, for those who are struggling with a new diagnosis, or seeking a diagnosis, or to find the money to pay for services. It means something for those struggling to throw off the stigma of autism, and to legitimize what their children have in the face of critics who persist in calling it simply bad behavior, or the result of lax parenting. It is for the “something” people that we ought to pray; those struggling to find their way, and enough strength, and the Lord’s hand. For them, someday, autism awareness month will mean nothing, too.

- Sarah

Filed Under: Asperger, Autism, Challenge, community, Courage, Encouragement, Journey, Uncategorized Tagged With: , , ,

Redeemed

April 1, 2013 By Leave a Comment

Redeemed. Such a fitting word for this Easter season, and for our season of life with autism.

The spiritual illustrations of this word come to mind immediately with just a review of the dictionary.com definition:

  1. to buy or pay off; clear by payment: to redeem a mortgage.
  2. to buy back, as after a tax sale or a mortgage foreclosure.
  3. to recover (something pledged or mortgaged) by payment or other satisfaction: to redeem a pawned watch.
  4. to exchange (bonds, trading stamps, etc.) for money or goods.
  5. to convert (paper money) into specie.

We Redeemed Ones have been reflecting long and hard and personally at what it cost God to redeem us. May we reflect also on what He has paid for, what He deserves in return, what He is entitled to.

But how has my life with autism been “redeemed?” Life with an autistic son (now almost 19) has cost us, big time. Dreams died. Energy expended, dissolving into tears. Therapies invested in. Paradigm shifts. Friendships that didn’t get a chance to bloom because frequent military moves and transitioning a special-needs kid took all our time, and then the next set of orders would come in. But I would have to say the biggest price I’ve had to pay is being deprived of my child’s affection. I’ve never heard “I love you” from him. I’ve never experienced the running jump hug.  My son has tolerated me and never snuggled. That part of my life with autism hasn’t been redeemed yet.

But I can’t help but feel hopeful about launching him off to Beacon College in FL this fall. In a way, the therapies, schooling, love and prayers redeemed “the years the locust has eaten” and set Dan on this path. We never anticipated he would get a standard diploma for his high school graduation this June. We never even hoped he would go to a four-year college, much less with an honor scholarship.  And the very inconvenience (to say the least) of our nomadic military life turned into a vehicle to make college affordable for us: Dan can use his dad’s GI Bill benefits.

This I know:

God is faithful and merciful and gracious.

My son is full of surprises.

God requires me to be faithful in the meantime.

This life is not all there is.

 

~ Danz redeemed Mom, Peggy

Filed Under: Autism, Uncategorized Tagged With:

Autistic – I don’t like that word

March 13, 2013 By 5 Comments

My son was diagnosed 5.5 years ago, when he was three, and I first read another person’s thoughts on this word in their book. I read a good number of books in those first months post-diagnosis. Some of the information left my memory immediately, some I used instantly, and some nuggets stuck with me to this day. When I read what that particular author said about the word “autistic” I thought to myself – “what’s the big deal?  It’s just a word.”

But I get it, and it didn’t take me long to realize why he or she didn’t like the word – because I soon found myself cringing every time I heard someone use it.

My kid is not defined: autistic. He just HAS autism. Just like he also has blond hair. He also has a charming personality. It’s one piece of who he is. He also has loving parents. He has a strong aptitude in math. He has a reading delay. He has eyeglasses. He has a love for video games. He has lots of things. But he IS NOT just one thing and he is not defined simply by any one of those things, good or bad. They all play into who he is. That’s why that word really bugs me. A person has asthma, but rarely walks around calling themselves an asthmatic. A person has Down Syndrome. A person has a disability or ability — they are not simply defined by that disability or ability. Fill anything into that blank you want to.

I hear the word autistic from many sources. I will hear doctors use the word, special education teachers, therapists, friends, pastors, extended family members, grocery store clerks, airline workers, bookstore clerks and so on. Less so, MUCH less so, from parents of children with autism, but I will even at times hear a parent say it.

What makes some people not like the word and some people not care one way or the other? For starters I felt it came down to education and personal experience with the matter. If you lived with a child and loved a child with autism, you may feel differently about how that child is labeled by the term. I have always felt open about our child’s label in regards to our community and our family and friends. (Our child’s awareness and acceptance of his label is another situation and you can see some of my past posts regarding that.) But being open about a label doesn’t necessarily mean I’m open to your using whatever label you see fit. I may find a label you use to be negative. Again, my child IS NOT autism, he HAS autism – one piece of who he is. Most of the time I don’t say anything when someone says autistic in a conversation with me. But I’m thinking to myself, “please don’t use that word.” And if the word comes up in a way that I can tell them my feelings regarding it, I will.

I wouldn’t become intentionally mad at someone who couldn’t know without personal experience how that word hurts me when they use it. But if I have an opportunity to explain myself, I appreciate being able to do so.  But why are some parents not offended by the word?  Have they just never thought of the negative connotation it puts on their child?  Am I more absorbed in it because I like words?  Is it a difference in the functioning level of children?  Or is Autistic the next “R” word we’ll be working to eliminate from our vocabulary and I’m justified in how I feel and think?

I’m interested to know – how do you feel about the word? And tell us in the comment if you’re a parent, support person, family member, etc.

Kara

Filed Under: Asperger, Autism, Diagnosis Tagged With: , ,

Building a Mystery

January 24, 2013 By Leave a Comment

A move does interesting things to an autistic. For individuals who are categorized by, among other things, their need for routinization, a change like this can be catastrophic in its proportions. For neurotypicals, the Homes and Rahe stress scale lists a change in residence or living conditions as major contributing factors to the accumulation of overall life stress (and ultimate potential for physical illness. On a related note, Noah’s sister – not coincidentally – has croup). So, one can only imagine what it does to the psyche of children with Asperger’s, for whom a change in routine or predictability can wreak emotional chaos.

Noah is desperate for a sense of contribution to the process of our move. The exercise of control over his circumstances is one way he attempts to limit his own explosions, ticking, and emotional outbursts. On Saturday, during one of our many trips to the new house, Noah positively lost his mind when he dropped a toy on the floor and cracked its exterior. He spent nearly 10 minutes in the bathroom, crying and screaming and wiping his eyes.

When he’d calmed down, he dug into a box of sundries in the living room and began pulling out items he wanted to “decorate” with. I explained that decorating was the last thing we were going to do – that the boxes needed to be emptied and the shelves needed to be cleaned; that we had so much left to move. He didn’t listen. Time after time, he returned to the box, pulling out vases and sculptures, plates and lanterns. He told me to come to the tables he’d decorated, and take a look.

“I need you to say something nice and complementary about what I’ve done,” he admonished.

“Something nice and complementary,” I said. Noah didn’t laugh.

The table was set in a perfectly symmetrical pattern. The same number of coasters, and the same coasters on each side. The large letter in the middle evenly dividing both sets. On the other side of the room, he balanced a wooden plate holder on each of two candlesticks. Between them both were two ceramic birds. Behind them, two matching statues. Then, this morning, he told me of the prior night’s dream. “The king told us to build a castle, and we stacked floors on top of each other, and they were teetering. And there was a soldier on each side, and a light behind each soldier…” He even dreams in symmetry. That mind of his, it’s always building mysteries.

All things same and balanced. The antidote to chaos.

This predilection toward symmetry isn’t unique to our son. In fact, it’s been reported that autistic children recognize symmetry better than do their non-autistic peers. But in our home, and for the present, this represents more than a simple neural function. Instead, I see it as a plea for order. As the boxes pile up in increasingly empty rooms, and we shuttle another load of furniture between homes, I am watching Noah and finding ways that he is stacking and sorting and separating to make sameness and order. I long to protect him from his own anxiety, but at the same time, help him to appropriately deal with it. This isn’t the only time in his life things will get messy.

“No, we declare God’s wisdom, a mystery that has been hidden and that God destined for our glory before time began” (1 Corinthians 2:7).

Noah’s mind is a mystery. The wisdom of God is mysterious. It is a function of my personality to be plagued by the frustration of ignorance, always asking why. But there are some things the finite, simple mind cannot possibly know. So for now, I must be content in the not knowing of things, and in the trusting that what I don’t understand is for good in the end.

-Sarah

Filed Under: Anxiety, Asperger, Autism, balance, stress, Trust, Uncategorized Tagged With: , ,
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