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Not tested this time

February 4, 2013 By 2 Comments

I like to think I would have been faithful

if He had said “No.”

Would I still have said “God is good”

if Plan A crashed and burned at our feet?

Would I have sung “Worthy of Worship” this morning

with such emotion and praise if we’d had to punt

(on this Super Bowl Sunday)

and sort through all the other websites and links

and tell Dan, “Life doesn’t always turn out the way we want.

We have to start looking at other options”?

I’ll never know, because I wasn’t tested this time.

Dan got his acceptance letter from Beacon College yesterday!

“Oh, you’ve been tested plenty over the years,”

said a dear choir friend. “You deserve this.”

And I love her for saying so.

But me? I’m so grateful I’m NOT getting what I deserve.

By God’s grace, I wasn’t tested this time.

I have my acceptance letter from Him!

 

~ Danz proud Mom, Peggy

Filed Under: Autism, college, Uncategorized

The Mole Hole

January 31, 2013 By 1 Comment

“Look at that baby,” I cooed to my husband leaving church on Sunday. “How precious does she look with her little face sticking out of that pink car seat cover?”

Matt looked over at the family, fussing over their kids, stuffing arms into coats. “Ah yes …. The mole hole.”

I laughed. “Yes! The mole hole! Do you remember the black one we had for Noah? He would grin at us from inside, and his little head was so sweaty when we pulled him out!”

When he was six months old, Noah’s mother, a first-time parent, believed he would be frozen in a state of suspended animation if his portable car seat (the “bucket,” we called it – apparently, our early parenting years were beset with plenty of pseudonyms)
wasn’t covered with his elastic-banded, fleece lined, water-repellant cover with the perfectly-sized hole for his head. In the most inclement weather, the hole could be closed with a lightweight flap, and Noah would emerge as safe and dry as the moment he went in. The mole hole, we were convinced, was the best of all the baby paraphernalia we toted.

Now, Noah’s room is his mole hole. It is the place to which he retreats when he needs a separation from the overly stimulating distractions of his world. I often find him in the corner of his room, where it is darkest, where the space is tightest, where he clicks away on his DS, lost in Mario something-or-other. He still prefers to sleep with his head mashed into the corner of his bunk bed, much as he did when he was an infant, and he would press his head into the crib bumper as if to wear it like a hat. Something about the snugness of that covering calmed him.

Now, I am Jesse’s mole hole. He is calmed by little else than my arms around him, tight like a vice. He wants the squeezing of his body, and the rubbing of his back, and it will not do from anyone else. In the middle of the night, somewhere around 2:00 a.m. give or take 30 minutes, a forceful knock sounds on my door, and I shuffle to open it and find Jesse standing there. Every night. Jesse gives me no chance to argue or rationalize him back into his bed, but darts past me like a tiny locomotive and pulls himself up into my bed. While I am not a “family bed” advocate, and Matt and I have taken great lengths to encourage our children to stay in their own beds, Jesse will not be otherwise convinced that where he sleeps after 2:00 a.m. is with us. And so I have given up fighting it.

Don’t tell Jesse, but I am (despite months of cyclical fatigue and interrupted sleep) kind of okay with it. The feet pressing into my thigh and the head in my armpit don’t so much bother me, as remind me. They remind me that Jesse, like Noah, is “unique,” and that he is as motivated by anxiety as by anything else. Perhaps he cannot articulate what rouses him from sleep so that he tears down the hall and into our bedroom. Maybe it is a nightmare, or a pain, or a fear that cannot be described, and so for now, I am alright with where his night prowling takes him.

But I too, need a mole hole. I need the Lord’s covering to calm me. I need that safe place, that quiet place, that dark place. I need a mole hole where I might close my eyes and feel the Lord’s presence above and around me, and I can press my head close to Him and feel His peace. We have just received an autism spectrum diagnosis for Jesse, and now in our second round with ASD, we are more aware of what titanic efforts must be expended on his behalf. We are tired just to think about it.

“He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.” Psalm 91:4

When my sons emerge from their mole holes, their worlds are more manageable, their fears are quelled. What refuge their spaces have given them is sufficient to heal them for a moment. The dark stillness is good to provide them the separation they need, so that when they return they are strengthened and ready, until they must retreat once again. My mole hole – that quiet place under the Lord’s wings, full of dusky mysteries – does that, and more.

But for all time.

- Sarah

Filed Under: Asperger, Autism, Challenge, God's presence, Uncategorized

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: , ,

Update on our Four-Legged Friend

January 23, 2013 By Leave a Comment

It has been six months since we began our journey of choosing to add a dog to our family, at the begging of our son Owen (age 8, HFA).   And it’s been five months since we adopted Buster.  I’ll be honest with you… it hasn’t been roses the whole way.  But I never expected it would be, and I think that is what got us through – having realistic expectations.  We were actually pleasantly surprised by many things, including how little Buster barked and how he slept through the night practically from the day he came home.  We’re new to all things DOG, and so we’re finding our way each day.  We have found ourselves having to rearrange our thinking on many things.

A couple things that surprised us:

1.) Just because a boy begs for a dog as a special friend and shows that he’s become acclimated to them doesn’t mean he’ll automatically know how to interact with one.  I guess I just assumed a boy with autism would have a special connection with a dog, because that often happens, right?  What I found is that Buster plays with my daughter very naturally because she can play back very naturally.  It is just natural to her, to touch him naturally, she can put her hands on his head and face and body without thinking about being nipped (which Buster really never does, but he will turn towards a hand).  I included Owen in Buster’s training classes right off the bat to help with this connection and realized that wasn’t going to help.  In fact, it just distracted with the training.  We are going to need to find other ways to build the connection, outside of a master/training relationship.  I can’t yet trust Owen or any of the children to take Buster for a walk, even to hold Buster’s leash while I walk him because Buster is just too excitable for that as a puppy.  (I’m open to  other ideas!)

Buster and Maella

2.) A perfect, sweet, little puppy who sleeps through the night and doesn’t bark alot grows up, finds his bark, and gets quite hyper!  =)

Buster, aka Super Dog!

3.) When you finally rearrange your thinking, let down some of your predispositions on how you run your home, and let yourself slow down enough to just cuddle with your dog… you realize, wow – this is going to be really good for ME!

Buster and Mama. I bet you're wondering if my Type A personality would allow dogs on furniture - No, he's not. =) But he's so warm and soft! My trainer agreed with me that Buster is smart enough and from now on he will be allowed to be on our couch when invited.

I’m still finding my way, and it took me alot longer to just LET GO than I think it takes most people who get a new dog.  But I am realizing the benefits as each week passes and I’m learning new things about myself.  I do look forward to the day when I can hear a door open and I don’t have to yell, “Be quick, Buster’s near the door!”  They tell me when he’s two years old he’ll be alot calmer.  ;o)

Owen reading to Buster

Filed Under: ADD, Asperger, Autism, Uncategorized Tagged With: ,

The Waiting Game

January 19, 2013 By Leave a Comment

I’m savoring the not-knowing.

 

The waiting. The anticipation. I can identify with every parent of a neurotypical child who is waiting for that college acceptance letter.

 

We’ve been on a different journey our whole lives with Dan (18, HFA, not Aspergers) – the road less traveled -  and we always will be, I guess. But this particular waiting time – well, I feel connected. I like it!

 

The military veteran part of me wants to take charge, do something, call the college: what’s the status of my son’s application? I’m his legal guardian, you can tell me! But I’m holding myself back, because I am relishing this common experience. But when the waiting is over, if we have a positive response from the one college he wants to go to, I’ll join the sisterhood of Empty-Nester Moms Who Have a Kid in College. And he won’t be in Special Ed anymore, he’ll just be a college freshman. Wow.

 

That letter can take it’s sweet time, while I bask in this moment and thank God for it.

 

~ Danz Mom, Peggy

Filed Under: Autism, college, Parenting, Uncategorized Tagged With: , ,

5 Characteristics of A Disabilities-Friendly Small Church

January 15, 2013 By 2 Comments

Jude and me at our church

On Sunday, our family took a huge step. With visual schedule in tow, Jude joined us in “big church” for the first half of the worship service and then attended children’s church for the remainder of the service. Most neuro-typical children find it difficult to sit still, remain reasonably quiet, and attend to the happenings of the typical worship service, but for an energy-filled child on the autism spectrum this can be an even greater challenge.

Thankfully, we have an outstanding church family. Many large churches fulfill the calling to love chosen families affected by hidden disabilities by creating special ministries and classrooms. Such an approach can be helpful, but many small to medium sized churches without the resources for disability ministries struggle to know how to help families like our own.

God has placed us in a relatively small church. In our children’s ministry, we have three classrooms for infants to 2 year olds and one children’s church class for both preschoolers and early elementary schoolers. We don’t have a large building or tons of money. Nonetheless, our church has embraced a gift named Jude with eagerness and flexibility. Below I list five characteristics of our church that have helped us enjoy gathering with them for worship despite the challenges involved:

1. Our church is a place free of judgment.

As a parent of a child with a hidden disability, you constantly feel judged by other people when your child doesn’t act “normally” in public. However, our church is a safe-place. When we are wrestling our little wild man in the fellowship hall and simultaneously trying to have a conversation, we never feel anyone’s eyes staring. Jude’s first time in “big church” didn’t go great. He didn’t want to sit. He didn’t know how to be quiet. He wanted to run down the aisle or crawl under the pew. Even so, we didn’t feel like anyone was saying, “Why don’t they do something with that child?!” Rather, we sensed the prayers of our brothers and sisters as they stood with us through this transition.

2. Our church has been flexible in classroom assignments.

Most children in our church leave the nursery and join the worship service and children’s church at 3 years old. Jude, however, turns 4 next month. He spent an extra year in the 2 year old class. He is a big boy who could pass for a first grader. You should have seen him towering over the other children! Still, no one pushed us to make the transition prematurely.

3. Our church has made classroom changes for Jude’s dietary restrictions.

On his gluten-free diet, Jude cannot have the typical nursery snack: Cheerios. Of course, he doesn’t know he can’t have Cheerios, and he thinks they look pretty appetizing. So Jude has his own snack table in the classroom, where he can eat his own snack free from Cheerio temptation.

4. Our church has demonstrated a willingness to learn.

Fortunately, we have a couple of women at our church who were formerly involved in special education, but even those who have no background in it whatsoever desire to learn about autism and about what makes Jude special. Furthermore, when leadership trains new volunteers, they take time to specifically discuss Jude and his needs.

5. Our church prays for us.

At certain times, our church has prayed corporately for our family. I cannot tell you how long we have gone fueled by that encouragement! Beyond those times, I know that many in our congregation pray regularly for us during their times of personal and family worship. Even when we suffer privately, like when the children of our church (many younger than Jude) sang Christmas songs for the congregation while we held him in the audience, we know that there are people who are sensitive to our sorrows and pray for us, even when they don’t say anything.

Love One Another

In summary, these five characteristics do not amount to anything revolutionary. We have been commanded to “love one another with brotherly affection” (Rom 12:10 ESV). Through these and other ways our church has loved our family specifically, and we cannot thank God enough for the love of Kenwood Baptist Church.

Joshua

Filed Under: Autism, Challenge, pastor/clergy Tagged With: , ,

Meeting the Educational Needs of Aspies

January 5, 2013 By Leave a Comment

At the school where I work, we are seeing an increasing number of kids with special needs – kids with Aspergers in particular. The rate of autism diagnosis is increasing exponentially.

According to statistics on the Autism Society website:

  • 1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder
  • 1 to 1.5 million Americans live with an autism spectrum disorder
  • Fastest-growing developmental disability; 1,148% growth rate

At that rate, we are going to continue to see kids entering our school and trying to cope in a “normal” private school environment. My son, now 16, was able to survive at the school through 5th grade but it got more and more difficult as he advanced. The issues were mostly social but he also had some academic issues. Like many kids with Aspergers, he had other learning challenges like memory issues and a disability in written communication. These challenges can be hard for a teacher to deal with in a classroom of 14, 18 or 25 kids, even if that teacher is a loving, gifted educator.

One reason we decided to homeschool was that most of the private schools in the area didn’t have resources to deal with Daniel’s needs and the one that did was extraordinarily expensive. Since Daniel was overwhelmed in a small classroom, we knew that the large class size in public school wouldn’t be a good fit for him. Our third option, homeschooling, meant that we would have to sacrifice some special services but we would be able to cater his learning to his learning styles and abilities.

I think any of the options would have pros and cons and each parent has to decide which is best at the time for his child. But I wonder how our culture will cope with the increasing educational and therapeutic needs of these kids. Can we have enough loving special educators or training for parents or services? What demands will this place on parents – both those who homeschool and those who don’t?

The statistics also said that 56% of kids on the autism spectrum will drop out of high school. I wonder if my son would be one of those kids – frustrated and depressed – if we had stayed in “regular” school.

Whether your community has lots of options for children with special needs or very few options, much prayer is a requirement for deciding what is best for your child. And, much prayer and thought will be a requirement for our society as we seek to address the needs of our children and our teachers. We want our kids to be loved, happy, and able to function at their maximum ability level – to the glory of God.

~ Brooke

Filed Under: Asperger, Autism, Homeschool, school, Special Education, Uncategorized Tagged With: , ,

The Light in the Being

January 3, 2013 By 2 Comments

I awoke on New Year’s Day with an inexplicable lightness in my spirit. Matt brought me a cup of coffee as I lay in bed (by anyone’s account, a great way to start the day). I am by no means a morning person, needing a good 5 minutes on the edge of the bed with half-closed eyes before I can even set foot in slipper. Which is why the brightness in my voice gave Matt cause to remark, “Well, you’re quite perky this morning!”

I grinned sleepily at him from under the quilt. I couldn’t remember the last time I had felt so…secure. So excited to continue. So ready to run.

“Yes I am!”

“Why? I mean, the present circumstances…”

“You’re right. It’s not exactly logical. But I’m still happy!”

In his brand new Christmas sweater.

On December 27th, Jesse was attached to a spider web of EEG sensors and laying in a hospital bed in order to evaluate him for epilepsy. The report from our Neurologist came through the next day, stating that though we are still waiting for the EEG report, he’s largely convinced Jesse is – like his older brother – also on the autism spectrum (though only a formal ADOS evaluation will tell). Having suffered from a low-grade flare through the holidays, I was beset by daily nosebleeds, including one “hemorrhage” that went on for 5 hours. We had one foot out the door to the E.R. because I looked like the president of some suburban moms fight club. We are moving and between homes. But we’ve recently found out that the contract for our new house may have fallen through too late and that, for most purposes, we’re now technically homeless.

HAPPY. Believe it or not, I am.

If it seems as though my posts take on a somewhat Eyeore-esque self-pitying tone, well then, you got me. I’m prone to listing woes – partly, because listing things helps me remember what needs yet to be tackled, and partly, because Matt and I are convinced we’ve hit the worst of our stretches, until another one comes along. In a way, my listing serves as a reminder that it could always get worse. Here though, there is no self-sympathy. I list to illustrate the illogicality of my happiness.

And to tell you from whence it springs:

“Yet this I call to mind and therefore I have hope: because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” Lamentations 3:22-23.

From the book of Lamentations – which chronicles the destruction of Israel and the horror of their fate after Babylonian invasion – comes an unlikely verse of promise and light. Because of the Lord’s great love, WE ARE NOT CONSUMED.

Because of what God has promised us, we are not consumed by illness or bankruptcy or loneliness or loss. We are not swallowed by the distress of fear or hunger or uncertainty or despair. We are strong in the face of adversity. Our beings are too light to be devoured by the darkness, for God in us is the antidote to every shadow.

To you of the hidden disabilities and the obvious calamities, I wish you a Happy New Year. May you ever fix your eyes on the Lord’s bright promises – those that make you safe, and strong, and swift.

- Sarah

Filed Under: Asperger, Autism, Challenge, Change, Contentment, Courage, Epilepsy, stress, Uncategorized Tagged With: , ,

My Graduating Senior

December 27, 2012 By 1 Comment

Some events, at least in our life with autism, get recorded here before they are 24 hours old. They are poignant, heart-stopping, amazing or disappointing, and I share my immediate reactions.

But some take time to process, even the good ones. I have been in tears, mixed with wonder and awe and humility, since December 7, and it’s time to share.

My autistic son Dan (HFA, not Asperger’s), who has been in special ed since he was 3 years old, SUCCESSFULLY PASSED his last state-mandated exam on his third try to earn a STANDARD diploma when he graduates from high school in June.

This is the kid who for years threw screaming tantrumming fits when he didn’t want to go somewhere, or for any other reason, like trying to get him to eat a different flavor yogurt than strawberry.

This is the kid who stared at the clock, obviously exhausted, waiting to go to sleep because it wasn’t bedtime yet.

This is my son, who recently wrote a letter to Regis Philbin asking him to be his mentor on his journey to become a gameshow host (nothing heard yet).

The same son we took to court for guardianship proceedings a couple of short months ago.

My son, who has had speech therapy, physical therapy, family therapy, ABA, RDI, one-on-one para support, and co-taught classes, sat down in front of a computer by his lonesome, answered the questions, and demonstrated the acquisition of knowledge required by the Commonwealth of Virginia to get the same diploma everyone else is getting at graduation.

WOW. I never would have thought. If we had known, would we have worked so hard? If we hadn’t worked so hard, would it have come to be? We literally did not know if he even had the ability to pull this off. We had hope, since he was only 2 points from passing the last time he took it. But, as I’ve said before, Reading Comprehension (inferencing, predictions) is one of the core deficits of autism. How much of this could actually be taught? We got our answer in spades, when he needed a score of 400 to pass, and got 442. Amazing.

Don’t give up the ship. Keep working hard. Bombard heaven with your prayers and those of everyone else you can enlist. You’ll be glad you gave it your last ounce of effort, no matter the outcome. As Dan quotes often from a favorite movie, “It could happen!”

 

Danz Mom ~ Peggy

Filed Under: Autism, Parenting, school, Uncategorized

Thoughts from the Heart

December 19, 2012 By 4 Comments

This in an ongoing thought and struggle in our hearts – trying to figure out how and when to talk to our children about our son’s diagnosis. You may wonder how he and our children don’t know. Well it’s quite simple in a way. It starts out when they are only three years old. You say the A word (autism) here and there around the house. Then after a year or so you just stop saying it, plus you never really liked saying it. In fact, it always made you feel a bit sick to your stomach. I always preferred thinking of it as “the A word” whether I was thinking about it, saying it out loud, etc. Not sure why, I just did. I accepted it long ago, and I re-accept it every year around anniversary time. But I still don’t like the word.

So over the years, the word “autism” has kind of dropped off the radar because we excluded it. I guess we got to a point where we just realized we weren’t sure what we wanted to say to him about it. He is high-functioning and I guess we just hoped he’d eventually be completely indistinguishable. Even though we had therapists in our home daily it just became so normal for our family and we always just explained that our son needed the extra help, which he did. There were just some areas where he needed extra teaching to learn. Like some kids in school who need extra help in speech, or reading, or spelling in order to grasp it.

Well, lately – the oldest sibling age 10 is noticing more differences and asking some light questions. Meanwhile, the affected child is making comments about kids in his class at school who have autism. He mentions that so and so makes random loud noises, or so and so doesn’t really talk, or so and so flaps his hands. He never tells me about it in a mean-spirited way he just tells me matter of factly. Yet he never thinks anything he does is odd. He will say things like, “ah, my brain is just stuck!” Or, “I forgot, my brain just can’t remember for long.” But he never notices when he is making bad choices in public, he just thinks all people think idioms are dumb, and he doesn’t realize that his inability to stick with peer play dates is part of his autism.

So here we are… still in this place, still trying to figure out what to say, when to say it, how much to say. Still wishing we just didn’t have to do it. We can’t ever undo what we decide to share and that’s very scary. It’s unfortunate when one child is ready for the information but another may not be… especially when both children are equally important (our third child is younger and is too young yet to notice).

I had always hoped, as naive as it may sound, that it’d all go away and he’d be indistinguishable and we would not have to tell him. But it’s not going away. He is high-functioning, yes. But – - it is there. His brother notices the differences. Many people in our community and church know and it’s not going to be long before something, someday is said to one of our children or him about it. It’s inevitable – we live in a rural area. I do feel he’ll receive more compassion in his life when people know. What I’m most worried about is how he’ll view himself, how he’ll process that. He can be pretty emotional, over the top.

Praying hard and asking anyone out there who wants to add a stranger to their prayer list to pray for us as well – may God show us strongly the time, the how, the what, and the depth of how to do this with our son and his siblings.

Still finding my way… several years post diagnosis – - Kara

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