Archive for 'Autism Spectrum/Sensory Processing'
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.
Sheesh.
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!
Right?
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.”
Hmmm.
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.
Right?
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.
I felt like a terribly bad mother last night as I dreaded this day. Not that it was some horrible blood-vial-drawing medical testing day, or IEP meeting day, or any of the other trying days we’ve all had as mothers.
It’s just that Edward had a 9 am soccer game, Joseph had a 9 am baseball game, Sue had a 12 pm soccer game and everyone had a school carnival extravaganza from 3 until 7. So much stimulation in one day is generally a setup for major tantrums, family disharmony and general filial chaos.
“Apparent Short-Lived Harmony”
“Mild disdain for sibling’s soccer game forcing you to sit in the cold at 9 am on a Saturday.”
I arrived with an overexcited Edward, armed with a passel of gf/cf treats to combat the cotton candy lust and sprinkle cookie bake sale yearnings. He bounced to his heart’s content, threw a whipped cream pie in the face of a beloved teacher, and met the school mascot.
(Is it just me or do you find this elementary school mascot a tad creepy?)
Still, the unexpected joy of the day came when Edward declared that he planned to play football with a gangly group of boys aged 7 – 16 that had gathered in the school playground.
Initially, my stomach flip flopped. I tried to steer him back to the giant bouncy slide. I cajoled him with dye-free jelly beans. I even agreed to let him drink a glass of lemonade that I am certain was laced with any sort of menacing yellow dye.
Nothing worked. He was bent on football and he raced on.
I was concerned that he would become upset and tantrum in front of all those children, but I was more worried that he would do precisely that in front of his brother who was a key player on one of the teams. Balancing their relationship has gotten trying of late as Edward’s personality has gotten a little large for the school and his brother is more of a child who likes to shrink into the background. Joseph loves his brother, but he is also ten, in a brand new school and trying to be a cool student-athlete.
Edward jumped in and was on fire–tackling 14-year-olds with abandon. He was quickly recruited by the middle school boys who loved his spunk. He played amazingly well, handling falls and tackles with aplomb and even calling a few plays.
And then at one point, the taller boys all tossed the ball to E, surrounded him with a wall of fourteenhood, and protected him through a rollicking touchdown. Everyone cheered and gave E high-fives.
And that child beamed. He shined. He was filled with such a joy it was contagious.
I sat there on the sidelines wondering how I ever could have feared for Edward’s future. Was this not God showing me a picture of His protection of my sweet child as he traveled this difficult life? How could I continue feeling so full of fear with God’s promises so clear?
Yes I will have to say, as they day closes, it was a good day.
Even the part where I had to “man” some bunjee jumpy bouncy thingy!
(I’m still hoarse from all the warnings!)
Last night, I had an occasion to take Edward to the grocery store without the other children.
Of course we were seeking ketchup–his favorite (and only accepted) condiment! (I would have to say he is it obsessed with ketchup since he dips scrambled eggs and raw carrots in it. In fact, I was lamenting this to MT this morning who always makes me feel better because her son has a ketchup penchant as well!)
We use the Publix organic ketchup because it doesn’t have high fructose corn syrup, and because it is the ONLY ketchup without HFCS that he will actually eat. And we have tried them all and we go through two bottles per week. Enough about ketchup!
So we are standing in line and of course Edward begins to peruse the magazines.
I brace myself for the inevitable questions. (Remember the child star?)
His first: “What’s a ‘bombshell’ ? Looks like it’s some kinda big woman!”
It is Kirstie Allie touting her new Big Life show.
He then directs his gaze to the checkout guy: “Do you know what a bombshell is?”
The fellow grins and laughs a little.
“Ahh, Mom, I see you are buying Advil PM! Is that because you can’t sleep? Can you not sleep because of all of Dad’s horrible snoring?
That is indeed why I am buying Advil PM…that and a four-year-old who won’t sleep in her own bed when she is sick and must listen to the Heffalump sound track in order to fall asleep every time she awakens from her feverish strep sleep. I also can’t sleep because every time you wake up, you turn on your history CD and I can hear it drone on and on about the Celts from my room…
The checkout guy glances at me and stifles a laugh. I swipe my card and pay for the goods. I’m packing up to go when I notice a Sierra Mist in E’s hand. I did tell him he could get it since he tried his best at social skills class. The guy rings it up.
“One dollar and eight cents!” Edward comments. “What’s the eight cents for?”
I begin my patented “tax talk” and he interrupts, “Oh yes tax, I know all about that. So what would tax be on like 200 million dollars?” He looks at the checkout guy who looks at me, smilingly dumbfounded.
“Never-mind you two. It’d be about $1.6 million,” Edward asserts.
More money than we’ll ever see…
And with that, we’re out the door!
We first wondered if Edward might have some food sensitivities after he ate a large piece of black forest cake at my inlaws and proceeded to bounce from carefully upholstered couch to silk-swathed chair like a ping-pong ball, his mouth bedecked with a cherry red ‘frostache.’
He was three.
Three-year-old boys being what they are, which is patently crazy, I didn’t think too much about it, but did decide to cut out all extraneous food dyes and flavorings. (It’s also pretty easy to limit what a three-year-old consumes.)
During Pre-K, Edward spent most of the time busily studying the world map or reading books about black holes in the corner, but he would emerge occasionally into the Pre-K world with a promise of some sugary treat like Nerds or Starburst. If offered a Tootsie Roll pop, he would slash a few marks on a “Letter A” coloring sheet or lacklusterly trace his name. His teacher started to notice, however, that a few minutes after he consumed the sweet, he would begin to fret and jump and generally become increasingly hyperactive.
We found some alternatives, armed the school with those, and went on our way. Of course that didn’t stop Edward from approaching perfect strangers at the grocery to warn them about food additives: “Did you know that product has Blue Lake #5 and Yellow Lake #3? They can make you hyper.”
Yes, they can.
A year later, we would embark upon the Gluten-Free/Casein-Free diet, but that is a whole other story for a different post.
What got me thinking about food sensitivities lately is how many people I meet don’t seem to realize that they exist, and that they can absolutely wreck a child’s behavior. Since we are trying another run at public school, I decided to volunteer to help teach the after-school clubs.
Initially Edward planned to sign up for archery, and I found that a troubling and frightening combination. Arrows, targets, Edward–it just seemed like a recipe for disaster and/or the wounding of others.
I was elated when a mother/physical therapist with a child on the spectrum decided to teach a Gross Motor Skills class. I figured after three years of sitting in on occupational therapy sessions, I qualified to be some sort of assistant, so I told her I would help.
She showed up the first day with a plethora of fabulous activities–scooter boards, bubbles, giant bouncy balls–you name it and she had a van filled with it.
Yet she also spilled out a bag stuffed with the most gloriously colorful candies and treats that I have seen outside of Wonka.
(Edward, poor, jaded soul that he is when it comes to food, looked at me wryly and, without too much grumbling, shuffled over to the table to partake dutifully in his gluten-free pretzels and apple juice.)
One little girl, however, immediately seized a fistful of blue Sour Patch Kids and began stuffing them in her mouth with gleeful abandon.
I was sort of shocked. I knew this child fairly well because she takes sensory breaks with Edward, and I knew her to be an exceedingly smart and relatively calm child. I mean she is a MODEL for Edward during the school day. But this child saw blue sugar and she could not stop.
She crammed “kid after kid” in her mouth until we feared she might choke. Three minutes later, her face turned bright red and she began running up and down the hall, screaming and shrilling. I had to run as fast as I could (which is not all that fast) to even hope to catch her, and when I did, she flailed and dodged me. She was inconsolable–screaming for more candy at one moment and writhing in the floor the next.
The aide who was helping us with the group was baffled because she worked with this charming little girl on a daily basis and had never seen her react this way. I went on to ask if it might be the food coloring in the candy, and after some interesting discussions on food sensitivities, we all agreed it must be.
So the next week, I bought a bag of vegetable dye gummy bears from Whole Foods and some pretzels for the snack. This sweet girl entered the class, locked eyes with me, and demanded, “Where’s the blue stuff? I need that blue candy! Please!” She whined and fussed for a minute, but contented herself with the gummy bears even though she sourly assured me they were not as tasty as the blue variety.
So later that week the mother/physical therapist teaching the club told me that she asked this little girl’s mother if she was sensitive or allergic to any foods. The mother said she ate everything and they had never noticed any problems with foods. The club teacher continued to tell the mother about the child’s reaction to the candy, and the mother was dumbfounded.
Another mother I met during a Sensory Connections parent support group was telling the group about her undiagnosed five-year-old whose Pre-K teacher was requesting she leave artificially colored and flavored foods out of his lunch to see if that helped with his behavior. This mother had never heard of food additives affecting behavior but after we went around the group and told our various stories, she decided to try eliminating them. We’ll hear at next month’s group how it went.
And then of course there is my dear friend whose son’s ADD was effectively cured by a regime of fish oil and eliminating red dye.
Would that it could always be that simple…
Anyway, if anyone else has a food sensitivity story they’d like to share, discuss it here, or write a blog post and I’ll be happy to link to it.
I’ll try to write something funny for tomorrow!
