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Black Dog

April 25, 2013 By 9 Comments

“I don’t like standing near the edge of a platform when an express train is passing through. I like to stand right back and if possible get a pillar between me and the train. I don’t like to stand by the side of a ship and look down into the water. A second’s action would end everything. A few drops of desperation.” – Winston Churchill (1874-1965)

At the height of World War II, one of the world’s foremost leaders and the champion of Britain’s campaign against the Nazis struggled with a black dog whose appearance could never be predicted, and whose mastery was never guaranteed. When the “black dog” of his depression appeared, there was little but a gleam of discernible hope preventing Winston Churchill from acting on those drops of desperation. Charismatic, popular, and brilliant with a seeming inability to comprehend impossibility of circumstance, Churchill was later speculated to have been living with bipolar disorder.

He shared the plight of mental illness in common with some of the world’s most luminous minds, including Van Gogh, Beethoven, Handel, Gandhi, Abraham Lincoln, Theodore Roosevelt, Sylvia Plath, Mark Twain, Virginia Woolf, Frida Khalo, and Edgar Allen Poe.

I won’t bother to bore you with a more contemporary list of celebrities suffering from mental illness, or more specifically, from bipolar disorder (and there are many). I will only reference a young man with bipolar disorder – Matthew Warren – who rose to ultimate celebrity through his untimely death. At the risk of over-elucidating the need for public awareness and acceptance of those suffering from mental illness, I cite Matt because it seems that within the Church, there are blocks of brethren that persist in wrongheaded notions about mental illness and, beyond that, how to treat their brothers and sisters when tragedy strikes. To quote Frank Viola (Christian Post guest contributor) in his blog likewise referencing the Matt Warren tragedy, Christians tend to fall in one of three camps where mental illness is concerned:

“1. Mental illness is demonic in origin. So the antidote is to cast out the demons that are causing it.
2. Mental illness is psychobabble. There’s no such thing as a “mental disorder.” All so-called mental illnesses are just sinful behaviors. So the antidote is for person to repent and get right with God.
3. Mental illness is a physiological disorder. The brain is a physical organ just like the heart, the thyroid, the joints, etc. Thus if someone has panic attacks or bipolar disorder or schizophrenia or chronic depression or ADHD, they have a chemical imbalance in the brain, not dissimilar to a hyperthyroidism or high blood pressure or arthritis.”

My blogs are traditionally long, so I’m going to respond to these philosophies in as little time as possible. Mostly, because I’m trying to remain civil.

1. To say mental illness is demonic in origin shows a patent disregard for Scripture and a misunderstanding of Christ’s mission on earth. Matt Warren had a personal relationship with Jesus Christ. The Word is clear that one cannot serve two masters (Matthew 6:24) – a concurrent occupation by both the Holy Spirit and a demon would be impossible. Further, Christ’s mission was not to interfere with the aggregate of human knowledge about the world and to further confuse us in our path to the Father, but to redeem those lost to sin. It would have made no sense for Jesus to actively collude with a primitive misunderstanding of the nature of mental illness by calling it “demon possession,” instead. In Luke 9:1-2, we’re told that Jesus gave the disciples “power and authority to drive out all demons AND to cure diseases, and he sent them out to proclaim the kingdom of God AND to heal the sick” (emphasis added). The Bible distinguishes these activities, separating demons FROM illness and disease.

2. To say mental illness is psychobabble – that “mental illness” is just the consequence of sin – is ridiculous. If you sin by cheating the government on tax day, you will feel sadness or guilt. These emotions are proof of a quickened conscience, evidence of the Holy Spirit’s conviction. These emotions actually support the premise that the sufferer has a proximity to God sufficient to elicit them (contrasted with the “seared conscience” referenced in 1 Timothy 4:2 of the one who is unaware or apathetic toward his sin). Even Christ himself experienced sadness – and is described as a “man of sorrows, acquainted with grief.” (Isaiah 53:3) So if sadness = sin, then was the entirety of the New Testament wrong about Christ’s freedom from sin? Also, what a cruel Savior we would serve if He brought “mental illness” on everyone who sinned! What of the criminals who’ve done awful things but maintained their sanity? Where is their mental illness? And what of the separate classes of mental illness? The cognitive disorders, such as dementia and Alzheimer’s, and the developmental disabilities, such as autism and ADHD, are included among these. Does it make sense to conclude that these patients are all in sin when (a) their illness would prevent them from even UNDERSTANDING they were in sin? And/or (b) their illnesses (in the case of developmental disabilities) were present from birth? How do you explain the “sin” for the child born with autism? How much sin was my Noah in when he was diagnosed with Asperger’s at age 5? And if you’re trying to pass those developmental disorders off on the parents’ sin, that’s not going to fly.

“His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the works of God might be displayed in him.’” (John 9:2-3)

3. Mental illness is an actual physiological disorder. And the weight of medical, biological, and neuro-scientific evidence agrees with me. If it wasn’t, then the (a) medication used to treat it wouldn’t work, and (b) the MRI’s, FMRI’s, SPECT’s, PET’s, EEG’s and MRS’s used to view structure, electrical impulses and connectivity within the brain would show nothing different for the neurotypical, than for the mentally ill. The last time I checked, demon possession and un-confessed sin weren’t reparable through modern medicine.

It’s because mental illness is an actual, physiological disorder that I was utterly shocked by some Christians across the web, who posted comments after Matt Warren’s death such as: “Suicide happens soon after your [sic] stupid enough to read ‘The Purpose Driven Life;’” and “Poor Matthew denies God’s love with suicide.”

“Brothers, do not slander one another. Anyone who speaks against his brother or judges him speaks against the law and judges it. When you judge the law, you are not keeping it, but sitting in judgment on it. There is only one Lawgiver and Judge, the one who is able to save and destroy. But you – who are you to judge your neighbor?” (James 4:11)

Did the authors of comments like those above read that passage from James?

I hope I haven’t come across too stridently. But my heart is so wounded for the Warren family, and I am so shocked by the pervasive ignorance and cruelty of some people in the Body that reigning in my tongue proved challenging. The bottom line is that those living with mental illness are struggling with challenges the rest of you – you 75%’ers, you neurotypicals – cannot possibly comprehend. We are told – commanded! – to love the “least of these,” to love our neighbors as ourselves. How much MORE SO ought this to be in the case of the Body of Christ? We who are separate from the world – in the world, but not of it? I urge those who are uneducated about the nature of mental illness to do their research. I urge you to pray for the mentally ill. I urge you to stop your hateful diatribes and lift up in prayer those whose lives are marred by a pain you do not know.

And now, finally, I’ll sign off.

I have to let out the dog.

- Sarah

Sarah@chosenfamilies.org

 

Filed Under: Asperger, Bipolar Disorder, Depression, Diagnosis, hidden disability, mental illness, 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: , ,

Fear and Trembling

December 20, 2012 By 1 Comment

I can’t remember the last time I was afraid. Nervous? Yes. Anxious? Regularly. But nervous and anxious are not the same as that white-hot void in your stomach that materializes when your future is on the cusp of changing for the worse; when your very life hangs in the balance. It’s been some time since I’ve felt that.

When I was 22, I spent a few months between college and law school working a mindless retail job at the mall. One night, during Christmas of that year, I was working a double shift until close. It was well after 11 pm when I got into my dad’s borrowed car in a vacant parking lot to go home.

“And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified.” Luke 2: 8-9

That night, I was over-tired, under-slept, and footsore. In an attempt to save time on my commute, I took a short cut that led me through a wooded area, near the state park. Fast forward to the current day. I’ve recently been issued a citation in the amount of $160 for doing 67 mph in a posted 45 mph zone, so I needn’t tell you that my foot is more lead than flesh, and that on the night in question I wasn’t adhering to posted speed limits. (A proclivity for fast things extends into other areas of my life, as in my riding for example, wherein my trainer has been known to scream, “Slow down! You’re going to kill yourself!!”) On that winter’s night, I may have been doing upwards of 80 mph. The music was up and the windows were down as I struggled to stay awake. I came barreling down the unlit, rural road, and hit my brights.

That’s when I saw it.

Directly in my path – not more than 25 feet in front of me – was a solid line of trees. Not saplings, or skinny birches, mind you. But a stand of meaty, ancient pines with large grey trunks and roots the circumference of duct work. I know, because I got close enough to practically kiss them.

The curve in the road that I had entirely missed had been marked off with a single reflector, and that single reflector hadn’t done me any good at 80 mph. My first thought was, “I will never hear the end of it if I total my dad’s car!” And then, for the first time in my life, I had this thought:

“I might actually die.”

THAT was my first encounter with true fear.

I’d like to think it was my cat-like reflexes that motivated the following thought pattern. If I slammed on the brakes, I would either (1) skid out and hit the trees passenger side first, (2) not gain enough brake leverage to stop in time to avoid a head-on collision with the trees, or (3) some combination of (1) and (2). So, I slammed on the brakes while banking hard to the left in the opposite direction. I had no idea what was to the left of the car, but I was turning there at about 60 mph.

What was to the left was a sedan carrying a couple who had no idea I was about to do a bumper-car spin-out into their driver side quarter panel. And then the clock hands started to slow, and I saw in perfect clarity what I see even now writing this – the glasses and the brown hair of the car’s driver, and the face of his passenger as she began to turn in my direction, no doubt prompted by the headlights shining into her ear. I saw the red tail light of their passing car and then the Ford logo as it pulled away, and I ground to a halt directly behind it.  My head hit the head rest, my bags fell to the floor, the car rocked on its suspension.

But I was alive.

I can think of no other explanation for surviving this kind of a close-call, than that the Lord had physically interjected his hand between the car, the trees, and the passing Ford. I am an awful driver, and an even worse magician. Close-calls like that aren’t just lucky, they’re divinely directed.

“But the angel said to them, ‘Do not be afraid. I bring you good news that will cause great joy for all the people.’” Luke 2:10

Do not be afraid.

Apparently the sister who booked herself a double shift during the Christmas shopping season, just to get a little extra scratch and nearly killed her tired, speeding self on the way home thought she could thumb her nose at fear. Then, fear showed her a finger of its own.

Fear – real, suffocating, pit-of-your stomach fear is about the worst feeling in the world. What I hate most about what happened in Newtown, CT at Sandy Hook Elementary is that those children and their teachers were afraid. Afraid in an “I might actually die” way. Afraid like a band of mutton-stinking shepherds when the pitch-black sky burst open and a voice from heaven like a sonic boom cried, “Do not be afraid!” kind of way.

(Footnote: I will save any discussion about the failure of the mental health system in America for a later time. For my part, I do not believe that the Sandy Hook tragedy was wholly due to laxness in American gun control.)

But now my fear, the real kind that makes you want to puke if you weren’t turning the wheel so fast, is what happens to those children who grow up to be Adam Lanza. His was a complex psychological picture and by every account, he was severely mentally ill. His handicaps were invisible. Among his many disabilities was an autism spectrum diagnosis – a diagnosis which the media has used as a lightning rod to establish debate between mental health pundits on whether or not the diagnosis gave Adam a penchant for anti social – and more specifically, violent – behaviors.

The white-hot fear I have now is for my children.

I find that fear is a more regular visitor now that I have children, and my heart walks around outside myself in the form of three blonde children who grew their tiny bodies just under my own ribcage.

I have a son with an autism spectrum diagnosis, with ADHD, with OCD, and with Oppositional Defiance disorder. I have another who may have epilepsy, who was recently described by our neurologist as “severely ADHD”, and who, in conjunction with the foregoing, seems to be expressing some severe behavioral problems that might point to something even more darkly complex. What happens to my boys when they grow up?

I am trembling just a little bit.

“’Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.’ Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, ‘Glory to God in the highest heaven, and on earth peace to those on whom his favor rests.’” (Luke 2:11-14)

Fear has an effective way of forcing us to listen. When your heart temporarily stops, it’s a great way to get your ears to work. Like when a great company of angels begins a chorus loud enough to strip the wool off the sheep and you think, maybe the baby in the barn might be worth investigating after all.

I am listening to my children. I am watching them closely. I am calling our neurologist and booking appointments at a lightning pace. We are even more motivated now – Matt and I. We refuse to be a statistic or a news story. We remember the place of purity from which our children began their lives, and we remember the One who provided it.  He is the same One who will protect them as they grow, and reward the diligence of the parents who’ve been entrusted to shepherd them. Though we continue to endure close-calls, our family’s path is, and always has been divinely directed.

There is no greater job than to parent these children, and we are privileged to have it. Remembering that helps the fear to fade. I get to take care of these three. What a gift. No matter what their ICD-9 codes are.

“But Mary treasured up all these things and pondered them in her heart.” (Luke 2:19)

For now, when I’m feeling a tad more rational and I’ve turned off the coverage of the Sandy Hook funerals and the days at school are uneventful with no disciplinary notices smashed deep in the bottom of backpacks, I tuck the fear back into a quiet chamber of my heart, to ponder it for another day when I am feeling less brave. And even then, it will be okay.  Because the baby in the manger made sure it would be.

Sarah

Filed Under: Anxiety, Asperger, Challenge, Christmas, Diagnosis, God's presence, growth, mental illness, 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: , , , ,

Smoke on the Water

September 13, 2012 By 1 Comment

It’s an auspicious start to the school year when your 3-year old comes home from preschool with a disciplinary note in the first four days of school. “Hitting,” “kicking,” and “destroying,” were the verbs his teachers employed. “Frowning,” “hair pulling,” and “sighing” were the verbs that followed.

For over a year, I’ve taken Jesse to music classes and story times, playgrounds and sporting events; anything to get him appropriately socialized in preparation for the upcoming school year. He was excited to follow in Noah and Grace’s footsteps. He wasn’t the only one. “Freedom!” my mind screamed. I stifled a fist pump after depositing them all in their classrooms. Fantasies of mornings on the porch with my laptop and a cup of coffee abounded. Perhaps I am of a different breed than those crying-on-the-first-day mothers. I am, I think, more of the crying-when-the-school-year-ends types. I mean, I’m going to get them back in only SEVEN HOURS. That is not nearly enough time to miss them.

But, I also had my reservations.

Jesse is energetic, funny, musically inclined. His dimples and blonde hair carry him farther than I’d like to admit. He’s also clumsy, obsessed with fire trucks, prone to singular arrangements of objects, and highly aggressive toward others. He prefers to play by himself, his memory is exceptional, and he’s quite verbal. Unusually verbal. Think “Of COURSE I’m not going to school mom, that’s ridiculous!” kind of verbal. Or, “That fire fighter will certainly fall off that ladder – it’s far too tall for him” sort of verbal.

Uh-Oh.

When Jesse was eighteen months old, we had him evaluated by the Kennedy Krieger Institute, the same highly respected clinic from which Noah’s diagnosis springs. Our pediatric neurologist had suggested that we have all our kids evaluated for developmental delays because these diagnoses seem to run in families, with a particular predilection for brothers. Statistics show that the risk of an ASD diagnosis for male infants who had an older sibling with ASD was more than 26 percent.

During his initial evaluation, Jesse was diagnosed with a language delay. But without therapy or intervention, the delay righted itself in three months. He went from a 5-10 word vocabulary to complete sentences in the time it takes for Katy Perry to dye her hair.

It is possible that Jesse may have a developmental delay like his brother Noah; that he will, himself, receive an Asperger’s or other Autism Spectrum Disorder (ASD) diagnosis. This is the smoke I see creeping toward us, the insidious lurking that threatens to disrupt our status quo. And in an effort to prevent another round of “you’re being over-reactionary” commentary, I’ve kept my mouth shut. Well, until now, when I’m blogging about it.

I lay bare my mother’s heart today because I have come to the conclusion that a diagnosis isn’t going to make two coons worth of difference to Jesse or us. Of course, it will change how he is educated. It will change how we spend our free time as we look to find appropriate therapies. It will alter the tactics we employ during his most difficult struggles. But an ICD-9 code means more to our insurance company than it does to us. Yeah, you hear that, Aetna? I’m coming for you.

At bottom, and more importantly, who Jesse is will not change because of a label. And believe me, his meltdowns will be no easier to weather just because someone in an office in Baltimore has given what he has a name. (When your preschooler is spitting at people in Wal-Mart, it’s hard to stomach either way.)

God does not abandon the work of His hands (Psalm 138:8). There was no cosmic “whoops!” when our youngest was born. Instead, God’s power is made perfect in all of Jesse’s weakness (2 Corinthians 12:9), and He’s raised all of us up for a purpose – that His power might be shown (Exodus 9:16). So ultimately, Jesse is put together just the right way, for the right time, and the right parents. No question, no mistake. Only perfect construction, fueled by perfect power.

And if it turns out that Jesse has no ASD after all – that he’s just quirky, exceptional, and VERY strong willed? Well, we’re ready for that, too. Because either way, we’re going to need a seat belt.

- Sarah

Filed Under: Asperger, Challenge, Diagnosis, Family, God's presence, siblings, Trust, Uncategorized

How Sweet It Is

July 18, 2012 By Leave a Comment

Noah’s Asperger’s Syndrome (AS) is merely a shadow now, barely visible except to those who know him best. This may change as he gets older and variables like driving, dating, and sports continue to distinguish him from his peers. We celebrated his 8th birthday yesterday, and he got the bike he wanted. He also got the basket and the bell he had requested for the bike. Now, I’m not sure how he’s going to pull off a basket and a bell on a Mongoose dirt bike. It doesn’t quite scream “bad to the bone,” as was his original intent, but we gave him what he asked for. It’s tantamount to his wearing knee-high Christmas socks to camp the other day, or changing his pj’s twice a night because the feeling of a waistband on his skin drives him batty. It’s the little things like this that distinguish him, that whisper of his uniqueness, that make us smile.

Noah met a new friend last week who is virtually his twin. A wonderful woman who boards her horse with mine encouraged her 9-year old Aspie son to meet Noah. As we suspected, they were off and running from the start. They made a point of interrupting our lesson to speculate to my trainer how she might solve the ant infestation problem in her tack room, as they had located the source and thought they had developed a solution. I was elated the rest of the day. Here were two boys who “got” each other right from the start. Their silences were not awkward. Their conversation wasn’t forced. They were alternatively content to ramble on one subject or another.

And then a few days ago at the pool, I met a woman whose son was severely autistic. I watched him in the pool, bobbing in place. He slapped the back of his hands together in a rhythm only he understood. His slack mouth hung open and wide in a smile. His mother told me he didn’t speak. She received her diagnosis from the Kennedy Krieger Institute – the same place where we received Noah’s.  Then, Noah came over in a flurry, asking for money so that he could buy a snow cone with the other boys. I was almost embarrassed to admit to her that he, too, was on the autism spectrum. Noah’s flapping has abated, his eye contact is better. Except for the barrage of words and his tendency to interrupt us (a characteristic that is shared by many neuro-typical 8 year olds, not just Aspies), his disability is well hidden. How could two mothers bear sons with the same disability, and there be such a disparity in circumstances? How could her life be so much harder than mine?

I realized then how sweet our circumstances are. Our son’s progress – with the help of talented teachers, therapists, and doctors – has been remarkable. An early diagnosis and parents with a fierce determination to give Noah every advantage also contributed. We struggle with much, but not nearly as much as others. Life is indeed sweet.

Gratitude is the twin of sweetness. I am humbled by how the Lord has stayed his hand on us and given us no more than we could possibly bear. I am grateful that Noah is on the upswing. I thank God for Noah’s uniqueness, and though our neurologist said there is no “curing autism, but managing it,” we seem to have reached some kind of happy, managed stasis.

I am grateful for the sweetness. I thank the Author for it. I’ll take it while it lasts.

- Sarah

Filed Under: Asperger, Diagnosis, Emotions, Encouragement, growth, healing, Journey, Relationships, Uncategorized

Acceptance – The Final Stage

February 27, 2012 By Leave a Comment

It’s surprising to me that I’m still stuck here, camping out on the outskirts of acceptance. I already thought I’d moved through this stage – in 2007, 2008, 2009, 2010, and 2011.  *Ever since his diagnosis in the Fall of 2007, I seem to mark my years from one Fall to the next.*  We took him in for evaluations; we knew something had to explain his struggles. But it still came as a shock when they said, “he has autism”.

I just can’t believe I’m still dealing with acceptance. I’ve been through this. I’ve had the heart to heart with my husband, every year.   I’ve admitted, “it’s not going away” – as much as I dreamed and hoped it would.  It looks different now than it did when he was three, and that’s a major part of the struggle – never knowing what next year will bring for him and how it will affect him.

But why do I still ask myself – will it go away … someday?

The problem with still asking myself that is twofold. It delays true acceptance, which I thought I had but the opposite keeps rearing its ugly head. And it means my children, my family, are living in a holding pattern. This is so complex, it’s hard for me to even approach it via a blog. It’s just not as simple as … tell him, the knowledge will help him own it, will help him to better understand himself, and it’ll help his siblings to be more understanding. Oh sure, that’s the neat and tidy happily-ever-after ending to this situation. But I don’t have fairytale kids. I have REAL kids. What if it all blows up in my face? Older brother becomes less understanding, more condescending? What if my son with autism spirals into a state of pity? What if he thinks less of himself because now he really understands why his sister, four years younger, is doing and saying and understanding some things that are still hazy for him?

There should be an emoticon (one of those cute email smiley face emotions) for sighing. Insert Emoticon: Mom, tired from always worrying about an unknown future for her child. I used to appreciate the puzzle symbol for autism. I still do, it speaks volumes. But I also loathe it. It kills me that I have no idea how autism will affect him as he grows, how it will present in his life.

I am thankful I have God walking ahead of me, and my Owen, and the peace that comes from Him alone. But the struggle remains daily …  accepting this life and the unknown that comes with it, forever.

Kara

 

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

Rethinking Normalcy

January 14, 2012 By Leave a Comment

I recently talked with a friend who had served for the first time in our church’s special needs ministry. After the service, I asked him about his experience in working with our children. He looked at me with amazement and said, “You know, these kids are so, well, so NORMAL!” It’s amazing how many people draw this same conclusion when they finally get to know our children on a personal level. This was great to hear, but my friend’s comment resonated with me and took me down the path of thinking, “Who are NORMAL people?”

The very word NORMAL carries with it the idea of adhering to a standard or “norm.” The challenge comes when we try to determine which standard we should use in our development of that norm. As a counselor, I could define my son as “299.00 Autistic Disorder.” I could then see how he compared to those without this description and determine whether he was NORMAL.

As I thought about this approach, I decided that something seemed missing in its methodology. Because, regardless of how wonderfully descriptive the Diagnostic and Statistical Manual of Mental Disorders (DSM) may be, somehow its description of Fletcher didn’t do justice to the wonderment I witnessed in my friend’s eyes.

Where could I turn to get a more robust description of NORMAL? Then it hit me; I decided to go back to the beginning. I reasoned that if anyone would be considered NORMAL, it would have to be Adam before the fall. As I opened my Bible, I thought, “What can I learn about this NORMAL man Adam?”

As I reflected on Genesis 2, I quickly saw five criteria that explained the pre-fall Adam and hence, the NORMAL person. First, the NORMAL person is a physical creation with a material body (2:7a). Adam occupied space on the earth; he was not a disembodied spirit. Therefore, he had a body.

Second, the NORMAL person is a spiritual creation with a soul (2:7b). God breathed life into Adam and he became a living soul. Adam was more than a composition of DNA; he had a God-breathed inner life, an inner life capable of producing affections, thoughts, and desires.

Third, the NORMAL person is a productive creation who enjoys working at one thing or another (2:15). Adam enjoyed tending God’s garden and caring for His creation.

Fourth, the NORMAL person is a moral creation who answers to God (2:16-17). Adam depended on God and followed his instructions.

Finally, the NORMAL person is a social creation who has been wired for relationships (2:18). Adam needed Eve to be complete.

From this brief narrative, I constructed the following biblical criteria for a NORMAL person. A NORMAL person is a:

(1) Material creation
(2) Spiritual creation
(3) Working creation
(4) Moral creation
(5) Relational creation

As I thought about Fletcher, I found that he fit the Bible’s definition of NORMAL more accurately than he did “299.00 Autistic Disorder.” Whereas Fletch fit a majority of the DSM’s criteria for his description, he fit the Bible’s criteria perfectly.

As I was pondering this definition of NORMAL, I looked down and saw Fletcher sitting on the living room floor (criterion 1), his heart filled with joy (criterion 2), contentedly occupying himself with a book (criterion 3), then obediently responding as I summoned him (criterion 4), and playfully hugging me (criterion 5). As I held my little man, I saw what NORMAL really looked like. Like my friend, my interaction with Fletcher brought a smile to my face and I found myself desiring to reach the level of normalcy that my son had already achieved.

Perhaps we need to rethink what it means to be NORMAL. As you think about your special child, always remember that DSM labels, although descriptive, can never fully capture what it means to be human. For that description, look for the biblical criteria in your child; you’ll get an encouraging picture of what it means to be truly NORMAL.

~ Todd

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

The Tyranny of Average

January 5, 2012 By 2 Comments

Perhaps better mothers than me would have been thrilled with the email that came today from Noah’s therapist of two years. With palpable enthusiasm, Kathryn explained that she had re-tested Noah according to the SIPT – the sensory integration praxis test.

For those of you who don’t speak the language of autism – that foreign lexicon of psyche terms, acronym-ed tests, and performance discrepancies – “sensory integration” is the neurological processing of all information received from the physical body (eyes, limbs, mouth, etc.). It is the marriage of what the body does, and what the brain receives. When sensory integration dysfunction occurs (as it often does for an autistic child), the processing of this information is disordered. The child’s interpretation of sensations from the body is off-kilter. Hence, the child’s desire to flap, spin or rock; his lack of coordination; his difficulty with handwriting, fine motor skills, or learning new tasks.

Kathryn performs these tests at regular intervals to test Noah’s progress, and while he has been “below average” for the past two years of his treatment, today he re-tested at “average” on seven of the seventeen sub-tests. A little hiccup of excitement rose in my gut. All the time, money and effort we’ve invested – they’re paying off! And then, that black part of my heart spat out: “Average? No child of mine is average!” Harrumph.

Don’t you just hate that parent? Barf.

We are fairly guaranteed that in most areas, Noah will never test as “exceptional.” If the best possible scenario comes to pass, his scores will mete out somewhere in the average range. And yes, it’s not lost on me that such an outcome is really the point of all his therapy. We want to get him as integrated and highly functional as possible, to reduce his diagnosis to nothing more than a shadow. Yet here I am, bemoaning the fact that he is better than “disabled,” but not nearly so “outstanding” as I’d like. So Noah finds himself at only 50% of distinction.

Okay. Maybe it’s MY problem with distinction. Come to think of it, Noah’s never had a problem with his self-worth. In fact, it’s healthy to the point of grandiosity. “I’ve already mastered the piano,” he’s told us. So, too has he told us that he’s “a genius,” “the most special” of our children, and that he shares a secret language with animals. Once believing he was actually Batman, he tested a toy jet pack to its limits from the heights of his top bunk. He was genuinely surprised when he only made it as far as the floor (the “Batman” phase was followed by its natural corollary, the “vampire” phase. This was subsequently followed by the “get out of your bed again and you lose your DS” phase).

I don’t relish Noah’s autism. But I now shamefully admit I may relish the distinction it provides. I’ve burdened us both by introducing my “autistic son,” and not “my son, who has autism.” The singular tyranny of an early diagnosis might lie in the fact that you’ve known your son to be disabled about as long as you’ve actually known your son. I am challenged to sever what we were told at Noah’s five years, from where he is at seven – much improved, more like everyone else. But still fully unique, masterfully crafted, an original.

Noah is so wonderfully made (Psalm 139:14), with a level of care indicating the Creator’s involvement from the very start (Psalm 139:13). As my mama once said, “God don’t make no junk.” Not that I’ve ever had to tell Noah that. But I’ve too often fallen back on my own psychic injuries and mistakenly identified my son by his disability – thinking it was what set him apart. What sets him apart is his tenderness, his penchant for slapstick, and his killer dance moves (including the robot and the flying monkey). He is unique for his turned-up nose and seven delicate face freckles, his to-the-death commitment to chocolate pop tarts, and what he does with Legos in the shower. I could go on, but you’d be reading all day.

Most critically, Noah is unique because God says so, because He carved out a portion of the earth’s molecules for Noah’s precise construct. Noah is unique because he is ferociously and eternally loved. And not just by his mama.

Autism, test scores – they’re simply what he HAS.

Who he IS? Well, that’s something altogether remarkable.

- Sarah

Filed Under: Asperger, Challenge, Diagnosis, growth, Parenting, Sensory Processing Disorder, Uncategorized Tagged With: , , , , ,

Radar Love

November 17, 2011 By 2 Comments

I don’t know exactly when the perception of Noah’s disability rose up to me like smoke from a pyre. It is said that mothers are possessed of a sixth sense, a preternatural ability to determine when their children are in danger. If I were anyone else, I might write my awareness off to this convenient little maxim, but in truth, I believe it was God nudging me with a quiet, determined hand.

I remember first uttering the words “I think Noah might be autistic” when he was eighteen months old, but his late walking, late talking, his repetitive flapping, his difficulty in looking me in the face all gave it away far earlier than that. His tantrums were earth shattering. His sensory difficulties were stymying. We begged off on birthday parties or took him to another room because the strains of “Happy Birthday to You” set him to fits of screaming. But he was affable, sociable, and an easy laugher. He liked people. And more than that, he utterly lacked stranger anxiety (which, though delightful at the time, has since been revealed to us as a potential indicator for autism).

Not surprisingly, I was called alarmist. A lot. And though I knew little of “normal” developmental behavior – Noah was our first child, and we were the first among our friends to have children – something, Someone, told me to persist.

Big decision + major consequences + opposition = stomach cramps. My default is the distrust of my own decisions. I can make a federal case of the choice of movie, outfit or ice cream flavor (“But what if I pick the praline and the chocolate is better, and then I’ve wasted 500 calories on WHAT?!”). But God is changing my personal mistrust through Noah – who, ironically or not – trusts everyone.

We’re told to be “wise as serpents and gentle as doves” (Matthew 10:16). We’re also told that if we desire wisdom, we have only to ask our Father for it, and it will be freely given (James 1:5). So, though I was matched with criticism in the early stages of this journey, I persisted in the difficult task of reaching a diagnosis because the Lord gave me what I prayed for: discernment. Our neurologist has applauded our efforts toward early intervention saying that most high-functioning children on the spectrum aren’t diagnosed until they are seven or eight. Noah was five.

I had to resist the urge to make a few “I told you so!” calls, what with it flying in the face of that “gentle as doves” part, and all.

In trusting God, I have also learned to trust myself. I have learned to listen to His voice within me, quiet though it may be, and appreciate the mother radar that He’s tuned to just the right frequency.

- Sarah

Filed Under: Asperger, Autism, Challenge, Conflict, Diagnosis, God's presence, Journey, Trust, Uncategorized Tagged With: , , , , , ,
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