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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: , ,

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: , , , ,

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: , , , , ,

Now…for the rest of the story.

December 16, 2011 By Leave a Comment

I loved Paul Harvey’s radio show, the way he would tell the first part of a story, then say, “now ... for the REST of the story….”  I love resolution, knowing how things turn out. It’s part of what drove me crazy earlier in my life, when so many plot lines were developing in my life, and no idea how/if they would resolve.  I LOVE MIDDLE AGE! (except for the going blind, going deaf, gaining weight.)  With 2/3 of my life behind me (theoretically), some things are making more sense. It’s not all better or all roses. As my kids would say, “Heck no.” But I can see some of God’s patterns. Some (and I do mean just some) of my faith is now sight … and I love the view.

For instance, I see now how marriage to my man has changed me in good and necessary ways. Not that I recommend looking for bi-polar men on lovematch.com or something! It’s just that Jesus has used it to produce good in me. Jesus was “green” before it was popular … recycling everything, wasting N-O-T-H-I-N-G.

I have an elderly relative, who is near and dear to my heart. She is slowly crossing the river Jordan, as old hymns tell it, and I am observing how hard it is to cling to Jesus when your mind slips. All the normal ways of getting fellowship and encouragement are reduced to a trickle. She can’t get to church,  can’t hear well, can’t read well because she can’t see well…isolation, depression are HUGE in our elderly population. She is no exception.

Blessed be the God and Father of our Lord Jesus Christ, the Father of sympathy (pity and mercy) and the God [Who is the Source] of every comfort (consolation and encouragement), Who comforts (consoles and encourages) us in every trouble (calamity and affliction), so that we may also be able to comfort (console and encourage) those who are in any kind of trouble or distress, with the comfort (consolation and encouragement) with which we ourselves are comforted (consoled and encouraged) by God. II Cor 1:3-4 (amplified)

This fall my husband and I are struck by how VERY similar his struggles mirror hers. He too knows what it is like to be low, VERY low, to have a mind that is unreliable, to struggle with attention span. Because of his suffering, he has been able to encourage this dear one, in a way I never saw coming.

But there is more to this story … as in, “Cast your bread upon the waters, for you will find it after many days.” Ecclesiastes 11:1

Back in his senior year in college, my husband had his first manic episode, followed by severe depression. No one knew of his yet-to-be-diagnosed-hidden-disability … but they did notice his erratic behavior, and it was not favorable to being in good standing at his school. A committee met to decide if he should be removed from honors standing – a move which would jeopardize his chances of going on to grad school. They extended grace.

Guess who was on that committee? My dear elderly relative!  (who was not elderly at the time, nor was I in the picture).

She advocated for him, from her position of influence, she gave grace and compassion to a very confused soul, emotionally and mentally. It’d be years before he married into her family, something she could not have foreseen at the time.  Now, 30 years later, he is in a position to significantly support her, share in her suffering, and return compassion to her confused and depressed mind and emotions.

NOBODY can write a story like Jesus!

Give, and it will be given to you. They will pour into your lap a good measure—pressed down, shaken together, and running over. For by your standard of measure it will be measured to you in return.  Jesus in Luke 6:38.

My dear husband, who knows me well,  gave me this card last year:

It will be o.k. in the end.

If it’s not o.k., it’s not the end.

Love you,

Joan

Filed Under: Anxiety, Bipolar Disorder, Depression, Emotions, God's presence, grace, Hope, Journey, Marriage 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: , , , , , ,

The Gift of Dyspraxia (a letter to my daughter)

September 14, 2011 By 6 Comments

Dear Sweet One,

I hope this note from me finds you safe and happy and living your life fully. I could sit down and talk with you about this subject, but I know how much you like to read, and how the written word sticks in your brain longer. So let me write you a letter.

You realize by now that you’re different than the world thinks you should be. Other adults and children have called you names: clumsy, clueless, odd, weird. Your preschool teachers asked me what was wrong with you. Your kindergarten teachers said you had a behavior problem. Some of your Sunday school teachers through the years have ignored you, stood you in a corner, and spanked you. I know you feel like you don’t fit anywhere.

But you do fit. How do I know that? Psalm 139 tells me so. God formed you when you were growing in my tummy. He made you like you are, and it is good. He saw every day you would live before He ever created the world. He knows everything you will think and everything you will say before you even think or say it.

Part of the way God made you the world’s doctors and educational experts call “dyspraxia.” Dyspraxia is considered a “learning disability” in most circles, but I prefer to think of it as a learning difference. The way God wired your brain differs from the way He wired other peoples’ brains. This different wiring means that you process information, or learn, differently than others do.

The grown-up definition of dyspraxia, sometimes called “developmental coordination disorder,” goes like this:  Developmental dyspraxia is a disorder characterized by an impairment in the ability to plan and carry out sensory and motor tasks. Generally, individuals with the disorder appear “out of sync” with their environment. Symptoms vary and may include poor balance and coordination, clumsiness, vision problems, perception difficulties, emotional and behavioral problems, difficulty with reading, writing, and speaking, poor social skills, poor posture, and poor short-term memory. Although individuals with the disorder may be of average or above average intelligence, they may behave immaturely. (National Institute of Neurological Disorders and Stroke )

The list of symptoms that signal dyspraxia looks like this:

• Exhibits poor balance; may appear clumsy; may frequently stumble
• Shows difficulty with motor planning
• Demonstrates inability to coordinate both sides of the body
• Has poor hand-eye coordination
• Exhibits weakness in the ability to organize self and belongings
• Shows possible sensitivity to touch
• May be distressed by loud noises or constant noises like the ticking of a clock or someone tapping a pencil
• May break things or choose toys that do not require skilled manipulation
• Has difficulty with fine motor tasks such as coloring between the lines, putting puzzles together; cutting accurately or pasting neatly
• Irritated by scratchy, rough, tight or heavy clothing

(Learning Disabilities Association of America)

Sometimes, dyspraxia is included with the sensory integration disorders, or sensory processing disorders. (It gets confusing because the names change so often.) You have a little of all of them: auditory processing difficulty (the way your brain decodes the signals it takes in through what you hear), visual processing difficulty (the way your brain interprets the signals that come in through what you see), and vestibular processing difficulty (the way your body determines balance and movement based on the space around you).

So what does all this actually mean for you?

It’s hard for you to catch a ball. Although you love them, monkey bars are frustrating for you. You get physically tired easily because your brain works so hard to give you coordinated movements. It takes extra brainpower for you to judge how far away things are, or how close they are, or how high up off the ground you are. These abilities are called “spatial awareness” and “depth perception.”

It’s hard for you to tie your shoes, or button a shirt, or zip a jacket. You can do all those things, but it takes a little bit longer and makes your brain tired. Many clothes feel uncomfortable to you. You prefer to stay in your pajamas because they’re made of just the right materials with no buttons, ties, or snaps.

You don’t enjoy jigsaw puzzles. You can do them, but like the shoelaces, they take too long and tire out your brain for other activities. You have to work extra hard in crowds to understand instructions and follow them. If the crowd is noisy, you cover your ears and try to find the nearest way out. You don’t like people bumping up against you or tapping you from behind. (I don’t like that, either.) If the room has the long-tubed fluorescent lights, your head starts hurting, and then you feel irritable.

You know how you can remember tidbits of information that you read in a book three years ago (long-term memory), but you don’t remember something I told you this morning (short-term memory)? That’s further evidence of dyspraxia. It affects your short-term memory so that you can only remember immediate things. That’s why repetition is so important for you. When you practice how to do something over and over, the instructions move from your short-term memory, which isn’t so reliable, into your long-term memory, which is very reliable.

Dyspraxia is why when you sit down on the couch with me or Daddy, you tend to sit on us instead of beside us. Dyspraxia is why you would rather staple cloth together than sew it. Dyspraxia is why you don’t like to cut your nails, brush your hair, brush your teeth, or get a haircut.

From all this information, it seems like there’s a lot wrong with you, doesn’t it? Let me put a different spin on things.

First, let me assure you: you are not the only person with dyspraxia. Daniel Radcliffe, the actor who plays Harry Potter, and Hannah McDonnell, an actress in Dublin, Ireland, are just two of the many people who live with dyspraxia. I think you would like Hannah. She founded the See-Saw Theatre Company for actors with various kinds of disabilities. In an interview a few years ago, she said, “The thing you have to remember is that you’re not wrong and you’re not broken. You’re just different in how you experience life.” I think we should make a poster out of that quote and hang it in our house.

Along with your dyspraxia and other learning challenges, God gave you character super-powers! You are persistent, determined, and creative. You are one of the bravest people I know. You are kind and compassionate, and your heart is so tender. I’ve watched you consistently befriend the kids who are on the fringes of the crowd because you notice them when others ignore them. These aren’t characteristics we taught you; God gave them to you.

It took you a long time to learn to ride your bike without training wheels, but you did it! You struggled for so long to read, and now you can read 200 pages in one afternoon! You gathered your courage and tried the highest slide at the water park and the highest diving board at the pool, and you love them! There are so many abilities you have and so many things you can do. You just do them differently than other people.

Instead of a disability, for our family I see your dyspraxia as a gift. Dyspraxia makes us slow down, take our time, and pay attention more than if we lived life like other people do. As a family, we work hard to look for the “why” behind our actions and to find words to describe our feelings. We have to work together to find creative solutions for the difficulties dyspraxia brings us every day. If you didn’t have dyspraxia, I don’t think you and me and Daddy would be as close to each other as we are because we wouldn’t need each other so much.

In the 11 years that I’ve known you, God has used you to transform my world. I thought I knew what kids were supposed to look and act like. I thought I knew how to teach reading and writing and arithmetic. I was wrong.

Your Daddy and I recognized a long time ago that parenting you the way we had been parented and teaching you the way we had been taught wouldn’t work for you. Raising you the way other people thought we should was squishing you as a person. God made you; He knows the plans He has for you—good plans for your well-being (Jeremiah 29:11)—so it only makes sense to run to Him and ask Him what to do and how to help you. Only God and His Word—His working in our hearts and lives, arranging our days, leading us to health and wholeness in unexpected ways and by unexpected paths—gives life to us.

I’m glad we need each other like we do. I’m glad God included dyspraxia when He created you and sent you to us. He’s giving us everything we need to live our lives fully and meaningfully, even if our lives don’t look like any other family’s that we know. We’ll keep asking Him which way to go next—“What now?”—and He’ll keep showing us. What an adventure!

I love you, and I am so privileged to be your mommy.

Cassandra

Filed Under: Diagnosis, Gratitude, Hope, learning disabilities, Parenting, Sensory Processing Disorder Tagged With: , , , ,

On Memory Loss (and being an advocate)

July 20, 2011 By 3 Comments

We read books about it (almost always fiction).  Laugh about it in movies.  See it used as a cheap gimmick in the afternoon soap operas.  How strange it is for me to say with all seriousness, “my husband has amnesia.”

Ben lost his memory in 2004.  Lack of oxygen to his brain caused him to lose at least four years of our lives together.   Unlike amnesia portrayed in movies, Ben never forgot his own identity.  He could remember people … but he couldn’t remember events from the past four years and his brain could not form new memories.  In fact, I had to tell him multiple times that I was seven months pregnant with our third child!

When he came home from the hospital, our five year old daughter was sitting on the couch reading a Frog and Toad book to my dad.  Ben took one look at her and started crying.  “When did she learn to read?” He asked.

Later that day, we were walking slowly outside.  Ben was silent, clearly confused and in pain from so many seizures.  He looked at a car he didn’t recognize in our driveway.  “Whose car is that?” he asked.

“My dad’s,” I answered.  “Oh,” Ben replied.  There was a pause, and then he asked the question I so desperately was hoping wouldn’t come up.  “Did your mom come, too?”

My heart sank with the enormity of loss.  I knew that this would be one of the strangest conversations I ever had.  I prayed that God would help me.  “No,” I said simply.

I could sense that Ben was hurt and confused by her absence.  “Why not?” Ben asked.  “She died two years ago,” I said.  I was calm on the outside, but inside my heart was breaking.

“Oh,” Ben said silently.  He didn’t speak again for the rest of our walk.

***********************

Coming home from the hospital after his seizures was a painful time for us.  The doctor who had been assigned to Ben in the hospital told me that there was no medical reason for Ben to stay in the hospital.

I remember pleading with the doctor. “He can’t remember what happened five minutes ago.  He doesn’t remember that I’m pregnant.  You can’t send him home like this.”

“Your insurance company will not let him stay in the hospital just because he can’t remember things,” the doctor replied tersely.  And with that answer, he walked away.

Oh, how I wish I had been more of an advocate for my husband at that time!  How I wish that I had insisted we be referred to some form of specialist, some form of therapist … anyone who could help us navigate the bizarre circumstances we were experiencing.  All we were told was “find a local neurologist.”  But neurology deals with disease of the central nervous system.  The neurologists we visited were focused on treating Ben’s seizures (with medication).  None of them were trained to help us deal with the behavioral and emotional changes brought on by Ben’s amnesia.

Some trust in chariots and some in horses, but we trust in the name of the Lord our God.

I know it is by God’s design that we were left to fend for ourselves in the bizarre world of retrograde amnesia (what we typically think of when we hear the word amnesia), and anterograde amnesia (loss of ability to form new memories).  But over the years I have learned to be tenacious in doing my own research and advocating for my husband’s health.  I trust God fully.  But I also know that I know my husband better than any doctor, and it is up to me to make sure that he gets the best treatment possible.

If you are living with a family member with a hidden disability, how have you had to advocate for your loved one’s care?  How do you find the balance between trusting God and searching and pushing for what you believe to be true?

~ Nancy

 

Filed Under: Acquired Brain Injury, Diagnosis, Epilepsy Tagged With: , , , ,
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