A JBU student asked me to share our experience with Logan as part of her Educational Psychology class for a presentation she will be making. Here was her question:
Briefly discuss your experience on the “path” of determining appropriate support for your child and family, from first observing and defining a special need to receiving proper, beneficial assistance.
And here was my answer:
Logan's pediatrician recommended that we seek a specialist to check him for autism when he was about 18 or 20 months old. We were shocked and devastated. We were in denial. But we did get some diagnoses and as the months went by, we finally realized that the symptoms we were reading about were very conspicuous in our son. It was unmistakable. And he gradually grew worse: more intolerant of bright lights, shrill sounds, and crowds of people. He never made eye contact. He fixated on opening and shutting doors and drawers, which put him in a trance. He couldn't relate to people at all and preferred being alone with repetitive movements. The only way he would communicate was by screaming and tantruming, or by wild erratic laughter. It was depressing and scary.
But we finally found an in-home therapist named Beth McKee who would commute from Rogers to help us twice a week. Her connection with Logan was electric and immediate: she got him to echo her words and look her in the eye on her first visit! After a few months, Beth announced she was opening an autism center in Fayetteville, and that Logan could be first on the enrollment. We were elated.
But the cost was extravagant. We used all of the inheritance from my uncle to put him in the clinic for 2 years, and we had to commute to Fayetteville twice a day, every weekday. The time and tuition and gas money just wasn't sustainable, and Logan needed to enter kindergarten after already sitting out a year. We are certain that the ABA therapy for 2 years was worth it. Since he quit the clinic in August, Logan has maintained most or all of his skills and has been happy in the transition to public school. Without ABA, he would never have learned how to learn. Nothing else that we tried was working.
And those skills have stuck with him. His favorite therapist from the old clinic now commutes to our home twice a week to keep up his ABA training. He has a long way to go -- he is still non-verbal -- but he consistently demonstrates that he is capable of learning new things, like using picture cards to request what he wants. We have also benefited from the NW Arkansas Support Network for Autism, whose monthly meetings put us in touch with speakers and resources and books with practical advice about the school system and how to advocate. It has been a long, exhausting journey, the toughest thing we have ever faced, but it has also been the most rewarding and important work we have done.
The Lord has taught us things and reached our hearts with this when nothing else worked. That's not why he made Logan this way, it's just a blessed side effect. He made Logan this way because He loves to hear the praise of Jesus, the Son of Love, on the lips of all his children, great and small, in their infinite variety. Logan often utters the name of Jesus. Our Lord's ways are inscrutable because His imagination is limitless. No one can guess what He will do with this sweet child.
Friday, September 27, 2013
Friday, May 31, 2013
Imposing One's Will on Autism
Today Logan and I hit the mall after I picked him up from the clinic. We like to cruise the mall, pretend we are in the big city. With all the glitzy storefront stuff and pedestrians, you get the illusion of street walking but with the "safety" of mall cops and lots of air conditioning. And you can buy Great American cookies, conveniently located in the central atrium. They also have a great indoor playground that Logan likes. I figured out that if you park at Sears, you get in right next to the playground, and Sears has a quiet restroom for Logan and also free shopping carts so that I don't have to load his huge jogging stroller into the car each time we go.
Today we had a great bonding time there. This time, he actually shared some chicken nuggets doused in Ranch with me from Chik Fil A. I haven't had luck with that til today, so I'm glad he ate some real (okay, more real than McDonald's) chicken and not just sweets. He maintained loads of eye contact as he sat calmly beside me on a bench while a young boy played piano in the food court. We also shared a jr. cone.
Then at the the playground, Logan bounded right in with the other kids as if no time had elapsed from last summer to now. And I didn't have to coax him or show him what to do at all. Last summer I would have to kind of help him warm up and remind him, almost hand-over-hand, of how to play. But today he climbed into the treehouse, slid down each side, ran up the bridge and down, ran up the waterfall, climbed the little mountain, and perched on the tent all by himself. One thing I kept reminding him about were the tunnels, but I didn't need to demonstrate this time.
Logan can't converse or do much talking at all yet at nearly 6 years of age, but on these days when he looks me right in the eye and smiles, checking in with me throughout a shared meal, and when I can hand him a bag of our trash and ask him to throw it away without hand-holding, and when we can enter stores without a meltdown or having him endanger my wallet by continually pulling delicate things off of shelves, and when we can just enjoy each other's company as we drive through the country in the truck (which he prefers over the van), and especially when I see him playing on a playground, doing what all other boys do without any overt signs of autism, I feel such a warmth inside and I feel hope and faith that he is really going to make it, and that he is going to be more than okay.
These things are more than I might have hoped for just a couple of years ago, when we weren't sure if he would look into our faces again with recognition. Before ABA therapy, all we had was screaming one dark summer, just constant stimming with him stuck in a trance, opening and closing doors or drawers ad nauseam. In those days, we could not get him to acknowledge our voices, to show any sign that we said something. So now, just hearing him say "Hi Daddy" is something to be thankful for. Nowadays he looks at us when we speak, and he obeys (pretty much) when we tell him to do something. Nowadays he can use a word (usually he needs a prompt or hint of the right one to use) to request something. But at least he knows that he needs to verbalize in this life, and at least he is willing to try.
Autism can manifest in so many different ways that I can't speak for anyone else. There are some accounts I've read that in part mirror Logan's condition precisely, but in others are much worse, and in still others much better off than his. For instance, some cases have the classic "doors and drawers" fixation, the lack of verbalizing and loss of eye contact. But then I've heard about many children who also have severe bowel troubles and a hugely restricted palate. Others cannot stand to be touched. I am so thankful that Logan has not had these struggles to deal with. But then again, some of the kids with those hardships have learned to talk much earlier than Logan. So each kid on the spectrum is unique.
I do know one thing: with this condition, you cannot leave the kid alone to "develop at his own pace" or march to the beat of his own drummer. If you do not intervene and attack this autism with as much effort, creativity, and persistence as you can summon, and enlist all the hired hands that your retirement funds can afford, then there is a strong possibility that the child may get stuck in a very scary place, cut off from human contact.
When Logan's symptoms first began to show (before the family physician even intimated we should get him checked for autism), I just thought he was introverted and that I needn't get up in his face; let the kid alone to do what he wants, right? Why impose myself upon him if he prefers the toy. But when it became obvious that objects were totally engrossing, and in fact that we ourselves had nearly taken the status of objects in his mind, then I realized (with ABA training) that the only chance Logan has of developing a human will is for others to impose their human will upon him.
You have to "get up in his face" constantly, and pull him up out of his comfort zone. You have to show him that what's going on out here among people is way better than whatever endless loop is playing out in his mind. He has to be rewarded for engaging with us. He has to trust that all good things come from us. He has to learn that sticking to his self-stimulatory patterns, even though they may be soothing and comforting in the face of uncertainty or demands put on him by life, will only keep him stuck in an unpleasant rut. He must be convinced daily that that rut is not preferable to what's going on out here with people, as challenging as that may be.
In the early, early days (and still to a large extent with any new multi-step task that most of us take for granted), Logan had to be taught how to figure out each miniscule detail of any process that other kids learn simply by observation and imitation: toothbrushing, lifting a fork and piercing a chicken nuggest, dipping it in sauce, picking up a handful of CheezItz and putting them in a bowl to lift to the table, matching puzzle pieces after first learning that a puzzle is not something to chew on or simply flail pieces around with. Now Logan can do all those things, and he understands the concepts of each thing as a whole, and even understands the verbal prompts involving these simple processes. Today Logan can even dress himself, which we can thank our nanny for helping him to do each morning before school. But with Logan, he would balk and fuss and whine and even scream to avoid these simple demands made on him, things that are reasonable to expect from any human being. Today he does them willingly. Not so just a couple of years ago (or for certain tasks, just a few months ago).
Thank the Lord for His Will imposed upon ours, so that by Him not leaving us alone to do whatever we like, we learn to like what is worth liking; and in accepting His demanding Will, we learn to toughen up enough to have a will of our own, that we may become a Self that can be known and can better know others. Thank God for His humanity, for His human reason, for being a Man, for walking among us, for showing us how it's done. Thank you, Father, for extending your mighty hand to work wonders even today.
[The mall playground photos were made 1 year ago, and the last photo is from May 3, 2013]
Today we had a great bonding time there. This time, he actually shared some chicken nuggets doused in Ranch with me from Chik Fil A. I haven't had luck with that til today, so I'm glad he ate some real (okay, more real than McDonald's) chicken and not just sweets. He maintained loads of eye contact as he sat calmly beside me on a bench while a young boy played piano in the food court. We also shared a jr. cone.
Then at the the playground, Logan bounded right in with the other kids as if no time had elapsed from last summer to now. And I didn't have to coax him or show him what to do at all. Last summer I would have to kind of help him warm up and remind him, almost hand-over-hand, of how to play. But today he climbed into the treehouse, slid down each side, ran up the bridge and down, ran up the waterfall, climbed the little mountain, and perched on the tent all by himself. One thing I kept reminding him about were the tunnels, but I didn't need to demonstrate this time.Logan can't converse or do much talking at all yet at nearly 6 years of age, but on these days when he looks me right in the eye and smiles, checking in with me throughout a shared meal, and when I can hand him a bag of our trash and ask him to throw it away without hand-holding, and when we can enter stores without a meltdown or having him endanger my wallet by continually pulling delicate things off of shelves, and when we can just enjoy each other's company as we drive through the country in the truck (which he prefers over the van), and especially when I see him playing on a playground, doing what all other boys do without any overt signs of autism, I feel such a warmth inside and I feel hope and faith that he is really going to make it, and that he is going to be more than okay.
These things are more than I might have hoped for just a couple of years ago, when we weren't sure if he would look into our faces again with recognition. Before ABA therapy, all we had was screaming one dark summer, just constant stimming with him stuck in a trance, opening and closing doors or drawers ad nauseam. In those days, we could not get him to acknowledge our voices, to show any sign that we said something. So now, just hearing him say "Hi Daddy" is something to be thankful for. Nowadays he looks at us when we speak, and he obeys (pretty much) when we tell him to do something. Nowadays he can use a word (usually he needs a prompt or hint of the right one to use) to request something. But at least he knows that he needs to verbalize in this life, and at least he is willing to try.Autism can manifest in so many different ways that I can't speak for anyone else. There are some accounts I've read that in part mirror Logan's condition precisely, but in others are much worse, and in still others much better off than his. For instance, some cases have the classic "doors and drawers" fixation, the lack of verbalizing and loss of eye contact. But then I've heard about many children who also have severe bowel troubles and a hugely restricted palate. Others cannot stand to be touched. I am so thankful that Logan has not had these struggles to deal with. But then again, some of the kids with those hardships have learned to talk much earlier than Logan. So each kid on the spectrum is unique.
When Logan's symptoms first began to show (before the family physician even intimated we should get him checked for autism), I just thought he was introverted and that I needn't get up in his face; let the kid alone to do what he wants, right? Why impose myself upon him if he prefers the toy. But when it became obvious that objects were totally engrossing, and in fact that we ourselves had nearly taken the status of objects in his mind, then I realized (with ABA training) that the only chance Logan has of developing a human will is for others to impose their human will upon him.
You have to "get up in his face" constantly, and pull him up out of his comfort zone. You have to show him that what's going on out here among people is way better than whatever endless loop is playing out in his mind. He has to be rewarded for engaging with us. He has to trust that all good things come from us. He has to learn that sticking to his self-stimulatory patterns, even though they may be soothing and comforting in the face of uncertainty or demands put on him by life, will only keep him stuck in an unpleasant rut. He must be convinced daily that that rut is not preferable to what's going on out here with people, as challenging as that may be.
In the early, early days (and still to a large extent with any new multi-step task that most of us take for granted), Logan had to be taught how to figure out each miniscule detail of any process that other kids learn simply by observation and imitation: toothbrushing, lifting a fork and piercing a chicken nuggest, dipping it in sauce, picking up a handful of CheezItz and putting them in a bowl to lift to the table, matching puzzle pieces after first learning that a puzzle is not something to chew on or simply flail pieces around with. Now Logan can do all those things, and he understands the concepts of each thing as a whole, and even understands the verbal prompts involving these simple processes. Today Logan can even dress himself, which we can thank our nanny for helping him to do each morning before school. But with Logan, he would balk and fuss and whine and even scream to avoid these simple demands made on him, things that are reasonable to expect from any human being. Today he does them willingly. Not so just a couple of years ago (or for certain tasks, just a few months ago).Thank the Lord for His Will imposed upon ours, so that by Him not leaving us alone to do whatever we like, we learn to like what is worth liking; and in accepting His demanding Will, we learn to toughen up enough to have a will of our own, that we may become a Self that can be known and can better know others. Thank God for His humanity, for His human reason, for being a Man, for walking among us, for showing us how it's done. Thank you, Father, for extending your mighty hand to work wonders even today.
[The mall playground photos were made 1 year ago, and the last photo is from May 3, 2013]
Wednesday, May 29, 2013
Here goes nothing
So far the posts here (til 2008) have said nothing about autism: Amanda & I began the blog (formerly called "The Lowdown on Logan") before we saw any signs of it in Logan's life. It has been several years since we posted anything: life overwhelmed us, and with basically 3 toddlers for a few years, it was all we could do to update our family and friends on Facebook. I'm not savvy with blogs, but in hopes that our journey with Logan's autism might be of some help or interest to others, I will post some of Logan's milestones here and resume it. I will also be adding old Notes and correspondence that document how we have agonized, prayed, been strengthened, and have seen both progress and setbacks in Logan's wonderful life so far. In spite of (and because of) the many challenges, it has been a very good run.
Sunday, January 13, 2013
A Prayer
Lord, help us not to be proud of our humility. Let us lose ourselves in finding the greatness in others; let us be so consumed with others' comfort that we forget to seek our own; help us so concern ourselves with the rights of even our enemies that we cease to see them as such. Let us stand so firmly for others' dignity, and kneel down so often at the feet of the least of our brethren in service, that we fail to notice when anyone steps on our toes. Forgive us for being so far from these ideals, but help us forget ourselves in striving so hard to see You.
Tuesday, December 11, 2012
"I tell you," says Jesus, "though he [God] will not get up and give him the bread because he is his friend, yet because of the man's boldness he will get up and give him as much as he needs" (Luke 11:8).
Okay, let me be bold and persistent in my asking: please hear my prayer, Almighty God, and grant my son a full recovery in the coming school years, that he may function socially, spiritually, emotionally, intellectually, at high levels and learn to speak, and speak well.
But in my boldness, I also ask: If you are willing to heal, then why do you allow such a thing as autism in the first place?
Jesus answered, "It was neither that this man sinned, nor his parents; but it was in order that the works of God might be displayed in him" (John 9:3).
It is hard for me to understand your will, but please help me to accept it. Not my will, but Thine.
Okay, let me be bold and persistent in my asking: please hear my prayer, Almighty God, and grant my son a full recovery in the coming school years, that he may function socially, spiritually, emotionally, intellectually, at high levels and learn to speak, and speak well.
But in my boldness, I also ask: If you are willing to heal, then why do you allow such a thing as autism in the first place?
Jesus answered, "It was neither that this man sinned, nor his parents; but it was in order that the works of God might be displayed in him" (John 9:3).
It is hard for me to understand your will, but please help me to accept it. Not my will, but Thine.
Monday, December 10, 2012
Had a meeting with the Special Needs coordinators at the local elementary school this morning. The results of their assessment of Logan showed "severely autistic" traits. It is hard to hear this again. But at least they know now the level of his need, and they can be gearing up for his arrival, possibly next fall. They can be looking for "para's" (para-professionals, or extra helpers) with more training in ABA and they can be aware of the intensive methods and therapies that work for him. Lord, help us train him up and do right by this boy who has so much potential locked away. Help us to help him learn how to learn!
Sunday, December 9, 2012
Jesus is in the neighborhood
"Jesus is in the neighborhood! Performing miracles and doing good." Today we were blessed by a little boy named Gary, 9 yrs old, who lives next door to my mom. As I pushed Logan past in the stroller, he ran along the fence, calling to his dad on the way, "Can I play with Logan?" The simple blessing of this boy reaching out to my son is beyond words.
He and Logan chased each other up and down the fort and slide; he'd try to tag Logan before he reached the top and then nudge him down the slide, then Logan would return the favor and give him the boot down, laughing all the while. I cheered them on and after Logan got his confidence up, he was nearly running up the ramp.
Then we three went out to feed the deer and look for Gary and his brother Micah's hideouts in the ravines and woods. We cleaned out litter like old beer cans and fast food trash tossed by drivers, and the whole way Logan climbed up the steep slopes, over fallen trees, and through brush and thorny bramble without hesitation. It was a great hike, and Gary kept talking to Logan during our whole visit.
When the girls came over, Gary pushed them in the swing and carried Elinor around and played so well with her that she cried when he had to leave. Gary, who had come over wearing flip-flops, told me he admired Logan's cool neon Nike shoes and that he was going to buy some like that with the Xmas money his mom would give him, adding that his parents were divorced.
During the afternoon, it also came out that Gary's B-B gun was broken, but I told him about a Daisy I have that's too small for me that he could use if his Dad approved. Thank you, Lord, for sending Gary to be our neighbor. It gave my son the chance to play like any boy among other boys. I only pray we can pass on that blessing.
He and Logan chased each other up and down the fort and slide; he'd try to tag Logan before he reached the top and then nudge him down the slide, then Logan would return the favor and give him the boot down, laughing all the while. I cheered them on and after Logan got his confidence up, he was nearly running up the ramp.
Then we three went out to feed the deer and look for Gary and his brother Micah's hideouts in the ravines and woods. We cleaned out litter like old beer cans and fast food trash tossed by drivers, and the whole way Logan climbed up the steep slopes, over fallen trees, and through brush and thorny bramble without hesitation. It was a great hike, and Gary kept talking to Logan during our whole visit.
When the girls came over, Gary pushed them in the swing and carried Elinor around and played so well with her that she cried when he had to leave. Gary, who had come over wearing flip-flops, told me he admired Logan's cool neon Nike shoes and that he was going to buy some like that with the Xmas money his mom would give him, adding that his parents were divorced.
During the afternoon, it also came out that Gary's B-B gun was broken, but I told him about a Daisy I have that's too small for me that he could use if his Dad approved. Thank you, Lord, for sending Gary to be our neighbor. It gave my son the chance to play like any boy among other boys. I only pray we can pass on that blessing.
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