Archive for 'Autism Spectrum/Sensory Processing'
I believe we are into week three with our medication trial for Edward, and I had to quote verbatim from the marketing materials for the title of this post! My husband and I have had so much fun mocking the pamphlets and checklists provided by this pharmaceutical company. I’ve never seen such complicated marketing packets and reminder stickers–all in soothing beach-tone colors of blue and light tan.
The medication promises “manageable mornings,” “assignments accomplished,” and “drama-free dinnertime.” The materials encourage us to “notice the little changes, write them down and celebrate the improvements.” There are photographs of a little boy enjoying board games with his sister while his parents smile adoringly. He smiles ingratiatingly at his mother as she prepares his breakfast, his backpack packed and jacket already on–clearly ready for a productive day at school.
We’ve been running around the house for the past three weeks occasionally lapsing into a faux reverie where we claim to be “imagining the moments ahead” when Edward will not interrupt me while I’m talking with a doctor to tell me that hedgehogs are extremely prone to cancer, or when he will actually remember all of his homework materials so I do not have to bribe a custodian to allow me entrance into the school to retrieve them every other day.
All sarcasm aside, we have seen a certain amount of calming in hyperactivity with the use of a very small dose of this medication. Specifically where we used to witness loud, screaming tantrums when the soccer team lost, we now see quiet sobbing. Where once we experienced shrieking and wailing at the threat of turning off a video game, we might see a fist pounded quietly into the carpet and a wry face, but otherwise a rather mild reaction.
It reminds me fondly of a Temple Grandin talk I went to last Spring where she spoke about gifted software developers with Aspergers who would quietly retreat to their cubicle when upset or overwhelmed. Her point was that they had learned how to manage their emotions in a socially appropriate way. I suppose I see this medication helping Edward do just that, and my hope is that this new reaction to adversity will become more ingrained for him and therefore a part of his coping skills.
In the meantime, I will continue my quiet reveries…
It’s come to my realization that I’m a “now” kind of Veruca Salt-like person with some weighty patience issues. I want everything fixed NOW! I want my house clean now, my new curtains made now, my dining room carpet ripped up now, and weight loss now.
And I want my child to pack his own backpack now, make eye contact with adults now, finish his homework legibly now, and gracefully lose a soccer game now.
God, however, is not a “now” kind of person. His timing is always perfect, but it’s rarely the timing I would choose at the time I’m assessing the timing.
(How many people have I lost at this point?)
I have been fiddling around with our gluten-free/casein-free/egg-free pancake recipe lately, and have found it hard to attain a lovely golden brown color on the outside while at the same time rendering the inside reasonably fluffy. When I turn the burner on “high,” I get a perfect pancake center with dark, charred-like outside edges.
Yet when I turn down the heat to try a more moderate approach, the pancakes look lovely and golden on the outside, but are runny-raw on the inside.
(At one point my children actually asked me if the liquid part was some kind of “pudding filling.” That just proves how much I have snowed them regarding my own cooking abilities because anyone who knows me remotely well knows I would never be able to carry off such a complicated culinary feat as a “pudding filling.”)
The other day, however, I was attempting to multi-task and craft pancakes at the same time, which only resulted in an equal amount of black-lace pancakes and raw dough ones. I finally turned off the burner and walked away in disgust, leaving the last pancake to languish in the pan.
When I returned, however, lo and behold I found the most perfectly browned, delicately cooked pancake!
OK, obviously many lessons can be learned here. When I leave things alone, quit pushing, and stop trying to control everything I slide over and let God take the driver’s seat.
Below you will find a list of most of the supplements, treatments, tinctures, educational options that we have tried over the years with our sweet Edward. I must confess, that before I started each one of them, I fully believed that this treatment would be the one to help us round the curve, crest the hill, truly make a “night and day” difference.
I would hold dear all the conversations I’d had in waiting rooms with other mothers who “ooowed and awwwed” over this therapy or that intervention that caused their child to finally be verbal, or, gasp, even lose their diagnosis.
Here’s our list:
*Floortime * Homeschooling * Tutoring * Kumon *EMDR * Music Therapy* BrightSpark* Focus Formula* Attend* Memorin* GF/CF Diet * Feingold Diet* The Listening Program * TOMATIS * Interactive Metronome Therapy* Chiropractic * Defeat Autism Now Protocol (DAN) * Occupational Therapy * Physical Therapy * Social Skills Groups & Camps * “How Does Your Engine Run?” Program * Joint Compression *Brushing Therapy * Hippotherapy * Homeopathic Attention Aids *Social Skills Camp *Private School *Public School *Part-time Public School *Swimming *Soccer *Gymnastics *T-Ball *Superflex Social Skills *Model Me Social Skills *
Now I can add *Stimulant and Non-Stimulant Medications* to that list. Yes, I have freaked out for years in fear of all things pharmaceutical for my child. We tried mild stimulants off and on a few times last year with no results, other than 48 hours of wakefulness and lots of stimming and perseveration.
After meeting several times with a new psychiatrist, we have decided to try a different medication that, guess what, takes a rather long time to potentially work. The irony of this is certainly not lost on me.
Am I saying that my child is a slow-cook pancake?
Am I saying that God is teaching me to be more of a slow-cook pancake type of person?
A common frustration of parenting a child on the autism spectrum is the reality that most insurance policies will not cover social skills groups, and those helpful groups are generally quite pricey. Our occupational therapist has wisely combined OT, (which is covered by our insurance), with social skills, and we recently began doing joint sessions with another boy of a similar age and diagnosis.
So the second time we met with this boy, he and Edward were playing contentedly in the waiting room, bandying some kid’s meal car back and forth while the therapist and I discussed the plan for the hour. All of a sudden out of the busy din of waiting room conversation rang a clear, rather piercing question:
“So, do you have Asperger’s like me?”
The little boy glanced sideways at Edward as he asked, almost, but not quite, making eye contact.
Edward looked at him, looked at the car, and continued playing in apparent oblivion.
To his own credit, the boy could not be deterred, and he fired the question again, this time more loudly to the packed waiting room:
“So, Edward, I said, do you have Asperger’s like me?”
Edward met his gaze, and in mildly exasperated tone of voice fired back, “I do not know what you keep talking about, but I do not have that!”
The therapist and I exchanged a troubled glanced with the boy’s father, and the boys were quickly ushered into the OT room.
Later, our therapist told me that she felt it was time to share Edward’s diagnosis with him because it appeared he was ready to understand it to a certain extent and because more and more of his peers knew about their own diagnoses and would be asking him questions about his.
This is not the first time I have heard this particular advice. I have also heard a plethora of advice against sharing a diagnosis with a child this age.
A bit later in the van, I asked Edward what his friend kept talking about. His response? “Yeah, I don’t know what he was talking about. He kept going on and on about ‘ass boogers‘ and I most certainly don’t have those. That sounds kinda gross…”
(insert grin here)
I went on to accurately pronounce the term and describe some of the characteristics of Asperger’s–how it was similar to ADHD, with which he is quite familiar–and how people who fall into that “camp” sometimes have challenges with social skills and making friends, paying attention and sometimes handwriting and a few other things. We also discussed many of the amazing advantages of having a brain structured like his, and how God had created him so uniquely for a specific purpose.
“Oh, well, yes, then I do have that. I absolutely have that Mom. That’s me…”
You could have knocked me over with a hummingbird feather.
Something I had agonized over and fretted over, something that had kept me up countless nights debating and praying over, was as easy as telling a child he needed to use a special pencil grip or might hit a baseball further if he used a lighter weight bat.
Over the past few weeks, we have had occasion to discuss Asperger’s in much greater detail. He now knows that several of his friends bear a similar diagnosis, and that has made him feel like he is most certainly not alone.
Based on a few comments he has made, I believe he is even recognizing how his difficulty reading facial expressions and body language often confuses him about what a friend is trying to do or say, and now he knows that Asperger’s has something to do with that. All of a sudden the social skills classes make more sense to him.
What was before so confusing, now has a name. That name gives meaning to his own feelings and experiences–both those that are challenges and those that are gifts.
I’m sure that in the days and years to come, this conversation will develop further complexities and nuances that are peacefully lost and absent today.
Yet today, I will revel in the simplicity of an eight-year-old who hears this diagnosis and does not cringe, does not question and does not fear.
That’s what I embrace today.
One of the most frustrating aspects of parenting a child on the high-functioning end of the autism spectrum (whatever that means these days) is the incredible disparity in behavior. Since we recently moved to a new town, we have had so many situations where Edward attends an event, behaves in a rather typical way, and things go rather smoothly.
Other times his behavior is so outside-the-box that both parents and children are looking at all of us oddly. Sometimes I have to give an explanation to the parents.
It’s this roulette wheel of behavior and expectations that absolutely exhausts me. Despite my best efforts at maintaining a great sensory diet prior to the event, making sure he is well-rested and well-fed, often times my best-laid plans just fall into an abyss of tantrums, incessant questions or just abject hyperactivity.
We’ve had great experiences, however, at our neighborhood pool during the past several weeks. The combination of the water and activity coupled with frequent snack breaks makes for a relatively calm outing. I have even allowed him to run off with his brother to the other end of the pool for short periods to play hide-and-go seek with the other children their age. And he has stayed with his brother! This is a big milestone for us, because before, he would run away the first chance he felt any taste of freedom.
Yesterday, however, I learned an important lesson about how Edward sees the world. He had been playing with Joseph and two other boys we met through baseball. The older boy wears glasses, so about half the time he wears them at the pool and the other half he takes them off. All four boys were playing hide-and-go-seek peacefully, giving me a chance to help Sue with her own swimming endeavors.
When we got in the car, however, Edward started talking about there being two boys named “Joshua.” Joseph said something like, “Well, I don’t know who you are talking about. We only played with Joshua Smith. There weren’t any other boys around.” And Edward said, “Well, there was the Joshua with the glasses who is eleven and pretty tall, and then the Joshua without glasses who is also eleven and pretty tall. We played with both boys, right?”
At that moment I realized that Edward could not read the boy’s face well enough to tell that he was the same person, glasses on or off. I suddenly felt this great rush of empathy for him, and how confusing the world must be for him at times. I started to feel so bad for the frustration I feel toward him when he doesn’t recognize a friend’s parent or a teacher he’s seen many, many times.
It was a good learning experience for Joseph, too. I believe it is incredibly difficult for Joseph to have any concept regarding what the world looks like from Edward’s perspective. Because he doesn’t understand these differences, he has little patience. This event, however, gave Joseph a little taste of how Edward sees the world.
It’s a taste we all need more of…
I tend to be fearful of jumping into the fray when controversies such as the one with Smockity arise. Part of it has to do with my unhealthy desire to please everyone and not make anyone uncomfortable, and the other part has to do with concern that I will write something so ridiculous it will drive everyone away.
So a few months after nearly everyone in the autism blogosphere has weighed in on this painful, and at times divisive, situation, I still find myself still wanting to enter the dialogue. Perhaps it will seem like I am stirring the ashes of a finally dwindling conflagration, but every month ought to be autism awareness month, so I will press on.
I have some complex thoughts about Smockity because I can totally see myself naively writing something like she did without being aware of the harm it would eventually cause. Yet I also felt angry toward Smockity because she hurt my feelings by making fun of a small child’s behavior–a child whose behavior sounds eerily like my own child’s. I do appreciate her apology as well as the flurry of unplanned autism awareness that her gaffe unwittingly caused.
As the mother of a child on the autism spectrum whose behavior can be the subject of much wailing and gnashing, at times I feel earnestly jealous of people who never know what it is like to have others roll their eyes when their physically typical darling throws down in the grocery aisle or accidentally whaps someone in the face during some excited flapping.
Yet let me dig a bit deeper and prove to be even more vulnerable. I also felt bitterness toward Smockity because she has eight children, creates delectable crock pot dishes, homeschools successfully, makes homemade country gravy and sews, and because she does all these things and still has time to video herself making homemade Pop Up books with her children.
All of this must mean she is a much more organized, talented, hardworking Christian blogger and mother than I will ever hope to be.
She must be successful. Why, she’s the Proverbs 31 woman!
Here’s where it gets even further complicated between Smockity and me. A few years ago a writer-friend was doing profiles on various types of mothers and asked to write about me. The article would be complete with glossy photographs in a magazine fairly well known in my town. At first I was horrified, but later I thought it might be fun and I would be able to share a portrait of a former public and private school family choosing to homeschool.
My friend described me as a “homeschool mom with a thriving online business and popular blog.”
When I first looked through the flawless pages featuring our family jumping gleefully on a trampoline, Sue with her bow perfectly in place and me with sunglasses perched jauntily atop my head, I felt good.
I looked and sounded like I had my stuff together.
(Ever heard of pride?)
And then I immediately felt sick. I’m not any of those things, and that magazine piece was not an authentic portrait of any kind of motherhood.
I struggled to homeschool (during the years that I did) and it was rare for me to complete a day’s lessons and still prepare a mildly nutritious dinner meal, much less something homemade. If selling a few books online every now and then is a “successful” business, then any college student who pawns off old textbooks on Amazon is an online whiz.
Yet women who read that article about me might easily see my apparent “success” and allow themselves to feel potentially inadequate. Sort of like I could let Smockity’s achievements make me feel today if I let the world’s twisted definition of success dictate my feelings.
After perusing Smockity’s blog, I have to say that I honestly like her. I don’t think she would tell any of us that she is anywhere close to the perfect Proverbs 31 woman, yet. She is called to live her life and I am called to live mine.
The blogs I return to day after day are written by unabashedly authentic and at times transparent women reaching out to other people while at the same time sharing their own joy, pain and wisdom.
I have struggled lately to find that balance in my own writing, and to find out why God has called me to write in the first place. I find it so painful and difficult to write when I am struggling mightily, as I have lately with my son’s behavior. Yet isn’t that the time I should be reaching out, sharing, being authentic?
I guess I am holding my own feet to the fire and admitting that I’ve become a blogging wimp.
Summer’s upon us.
And I’m running scared.
It’s not that I lament my children will be home with me twenty-four hours per day for the next several months. I did homeschool them for a few years, so I am used to having them around.
It’s just that “last-few-weeks-of-school” frenzy has me crazed, and has disrupted Edward to the point that I’m considering pulling him out of school. Yet since there are only two weeks left, that makes little since.
Plus I am supposed to got to New York during the last week of school so why would I blow that?
Why would I?
For the past four years I have gone to New York with my best high school and college friend to work a stationery trade show with her. It is desperately hard work, but amazingly fun, and many times I believe this trip has saved my sanity and potentially my marriage.
(Yes, I know I’m overly dramatic, but I’m serious about the sanity part.)
Ok, B just walked in here, saw the title of the post, and told me I should go to New York.
I am just seeing poor Edward melt down in the wake of disrupted schedules, class parties and field days. He simply cannot handle a schedule that switches Social Studies with Art and eliminates Math. Throw in a Third Grade talent show that he is not able to participate in because he is in Second Grade, and I don’t know what will happen!
Do I think that I am the only person who can help him traverse these schedule-trashed waters? Do I think that only I can make sure he is safe, well-fed and has enough books?
Can I go on this trip without crushing guilt?
Am I harboring unhealthy angst because he fell off the trampoline while I was in plain sight?
What is wrong with me?
It doesn’t take much time spent reading this blog to realize that my 8-year-old son, Edward, is a sensory seeker. Running, bouncing, spinning, crashing–these movements and sensations are all a therapeutically necessary part of his everyday life. These actions provide the proprioceptive input his body craves in order to maintain some sort of focus and order, and without them, he cannot sit still, concentrate or maintain his emotional composure for any length of time.
Edward takes sensory breaks during the school day during which he bounces on a mini (I shudder to utter the word) trampoline; his classroom is equipped with multiple bean bags and large pillows for crashing and smashing. He pops over to the OT room for some intense spinning in a mesh swing, and thrills to careening all over the OT room on roller boards.
Edward spends almost ever afternoon after school outside in the back yard swinging, playing “tackle” football with his brother and rolling around in the grass. We have devoted an entire storage closet in our new house to being a “crash room” outfitted with huge pillows, futons and mattresses. Only after these activities is he focused enough to endure his social skills class or attempt handwriting practice.
So after Edward’s untimely tumble off an un-netted trampoline, (at a friend’s house), and subsequent ambulance ride, we leave the ER with this sage advice from the attending doctor: “His recovery should be fairly easy. Just keep him calm and quiet for the next week or so…no running or jumping or rough-housing.”
My husband and I looked at each other and our shoulders kind of slumped.
The next day we wondered aloud why we hadn’t asked the doctor for a sedative…for all three of us.
We have made it through the one-week mark, and I have to say I am beginning to relax just a bit. When he tripped over his sister’s huge box of crayons yesterday afternoon, my heart did stop for a moment, only to start beating again when he assured me, “That was my hip, Mom, not my head!”
Here we are the day before tax day and the midpoint of Autism Awareness month, and I find myself over here just feeling incredibly mad.
There have been some fascinating news items and blogosphere controversies surrounding autism this month. Some excellent dialogue has taken place and I believe much has been accomplished in the arena of Autism Awareness.
Yet today, I am just angry, pissed off and flat-out livid toward this exhausting developmental challenge called Autism.
I am sad that a mother in my child’s school promised a playdate within actual earshot of my child and then just never called back or returned my phone call. She doesn’t have to listen to the endless questions about why she never called and why that boy must not want to play with my child.
She doesn’t realize that this was the VERY FIRST playdate that he has been invited on since we moved to this town in August of 2009. This mother used to work in an autism clinic! I’m just mad and I sure don’t want to see her in the school halls anytime soon.
I am world weary of fighting with my insurance company to somehow coerce them to pay for at least a fraction of my son’s treatments. I am almost driven insane by the cost of summer camps that cater to children on the autism spectrum. As if we haven’t paid enough out of pocket throughout the year for supplements and non-covered treatments, now summer comes and we have miraculously find more cash.
Yes, I am sure there are some perfectly grand camps out there sponsored by Easter Seals and the like, but my child needs intense social skills work and let me just tell you that anything associated with social skills is ridiculously expensive.
I am so sick and tired of friends and relatives who hint, or actually come out and say, that my son’s autism was caused by something I did or didn’t do during pregnancy. Or that his difficulties stem from me not loving him enough during infancy. Or that perhaps he has a completely different disorder that they have vaguely heard about on the news but has absolutely nothing to do with his challenges! Google it people! Don’t throw disorder names around when you have absolutely NO IDEA what you are talking about!
I’m relatively pissed off at my child’s teacher who pulled me aside after Edward’s solo to tell me that she was extremely proud of how far he had come this year, but then looked deep into my eyes, grabbed my arm and reminded, “But you know he still has a long way to go.” No sh** woman! You think I don’t know that? But thanks for the reminder. Made my day.
I usually try to end my posts with an uplifting, hopeful comment or message. Today, however, I can’t see the light at the end of the tunnel or the pot at the end of the rainbow or the promise of my child garnering a great engineering or programming job at the end of an Asperger’s diagnosis.
Today, I’m just mad.
Genny over at My Cup 2 Yours wrote about her three favorite parenting books today, and I thought that would be an winning way to begin the first day of Non-Spring Break, as I like to call this day. I am dedicating this day to five loads of muddy laundry, picking up all the exploded water balloons throughout my back yard and treating the poison ivy that I apparently garnered during one of our hiking adventures.
In the meantime, here are a few books that I have loved since becoming a parent:
I am a big fan of The Five Love Languages of Children by Gary Chapman. I try to re-read it every few years so I can attempt to discern what love language each child responds to because I have found their languages change as they grow. My oldest child used to be “Quality Time,” but as he has creeped into tweenhood, “Words of Affirmation” have usurped his desire to spend so much time with me…unless I am taking him to a restaurant or the ball field of course. Edward’s love language is quite tough to discern these days. He is a major lover of gifts, and likes “Words of Affirmation” somewhat, but he is just such a complex child it is hard to say. Sue’s language is absolutely “Quality Time” spent playing with Barbies, building babies and playgrounds out of Legos, and making worm houses out of sticks.
I also find myself reading through Bringing Up Boys every few months, even if it is just to remind myself that the brain of a boy is bathed in dangerous chemicals, and that is why they feel compelled to build bombs, climb way too high in fragile crepe myrtle trees and nearly crash through plate glass windows. (The window thing happened yesterday.)
Another favorite is Praying the Scriptures for your Children: Discovering How to Pray God’s Will for Their Lives, by Jodie Berndt. This book is divided into five sections such as “Praying for Your Child’s Future” or “Praying for Your Child’s Relationships.” I have spent a lot of time in the chapters entitled “Praying for Self-Control, Diligence, and Self-Discipline” as well as “Praying for Health and Safety.” I have a cool testimony associated with that book that I need to share one day.
On the autism front, I have read so many books that they all run together but my latest favorite is The Complete Guide to Asperger’s Syndrome by Tony Attwood. This books is so well-organized and answers so many questions about the typical road to an Asperger’s diagnosis. In reading this, I realized that our road to diagnosis was, surprisingly enough, fairly typical and that has alleviated some of my own guilt regarding whether or not I should have taken Edward to get more developmental testing at an earlier age.
If you would like to write about your own can’t-live-without parenting books, just pop on over to Genny’s site and grab her button!
Since the diagnosis roulette wheel has finally slowed to a stop, I have gradually begun to feel a bit more comfortable with Edward’s Asperger’s diagnosis.
I even told my mother about it this week without crying or hyperventilating.
Still, it’s always a bit nerve-wracking to go into developmental assessment and psychological testing type situations even though I am now armed with a hefty binder of reports.
I find that Edward, too, has began to thrill to these types of meetings and assessments.
(Wait a minute, he always thrilled to them…)
We found out about a university-run social skills summer camp a few months ago and decided to apply. Of course Edward had his sites set on a “survival skills” camp, but since social skills are so closely tied to survival I didn’t feel like I was being too terribly deceptive in telling him he was “trying out” for a survival camp.
He did decide to wear some camouflage pants.
We arrived early where Edward asks the receptionist about thirty thousand questions about a small desk water feature. One question involved whether or not the plastic ball that spun about in the milky water was made from extruded plastic. The poor woman was just trying to type. Just trying to answer the phone.
Interestingly enough, although we were 45 minutes early, we were soon called back for our interview. We are greeted by two bright-eyed child psychologists who look like grad students.
Edward settles himself comfortably at the interview table and addresses the camp psychologist:
“So I see you are a convict…”
The poor youthful psychologist looks at me quizzically. I point to the stripes on his shirt and nod.
Next Edward is required to describe what is happening in a variety of photographs depicting various childhood social situations. A child who has clearly fallen and skinned his knee is described as “demoralized” and “gravely wounded.”
Naturally he devises a complicated system of checking off the questions as he completes them. This involves creating an icon for each item based on a team that his soccer team, the Slimers, have played and supposedly defeated. It’s terribly complicated and time-consuming but the psychologist handles this patiently and E completes the interview after soundly beating the fellow in three games of Connect Four.
At this point, a reward-treat is offered and Edward trots off to procure it with the psychologist while I meet with the other camp counselor who assures me that E is a wonderful fit for their camp and that he will probably enjoy the drama and acting the most. I assured her she was correct about that, and that I was potentially planning on selling plasma to pay for the insanely expensive camp.
A few minutes later the other youthful psychologist enters the room and looks around nervously. Then she whispers to me, “I left all the treats at the other office.”
She begins to scramble about bags of coffee creamer while Edward eyes her expectantly. “I’m sure you’ll find a suitable treat for me,” he assures her, and continues to grill the other psychologist about whether or not the camp will involve squeezing water out of animal dung.
All of a sudden I eye a bag of mint Life Savers. “Here, this will work perfectly! He never gets any ‘normal’ candy so he’ll be so excited about this,” I assure her. She looks skeptically at me and hands me several mints. “No, just one is enough. There is probably some sort of artificial color in there somewhere and we can’t have much of that…”
She presents the mint to Edward who beams like she’s handed him a gold bar: “Thank you, thank you, thank you, Dr. Kelly! This is just what I wanted. Just perfect!”
And with that we are off to collect the van in the free valet parking area.
You have to love a children’s medical facility that provides free valet parking.