Archive for 'Autism Spectrum/Sensory Processing'
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!
If you are new to this blog, or if you are confused because I have never spelled this out in black and white, my son, Edward, who is eight, does fall on the autism spectrum, specifically with a diagnosis of Asperger’s.
(Like many of you dealing with a new diagnosis, I write this with mixed feelings of both relief and trepidation. This is a label that I am just now beginning to absorb. After so many “possibles” and “closely resembles” from a host of doctors, the need for services at his new school necessitated this label, and I am OK with that.)
As with any child, Edward’s behavior vacillates wildly, so there are situations where he is completely like his peers and there are other situations where his differences stand out more. Soccer is an area where he gels fairly well, so I struggled with telling his coaches about his diagnosis.
I am new to this town and I don’t know what to expect. Will they still let him play on a “typical” team? Would they treat him differently? Do I want him to be treated differently because he has made it perfectly clear that he does not want to be treated differently.
After much agonizing and reading various professional and parental opinions about how to handle just this type of situation, I decided to simply share that he has issues with focus, attention and self control, and might need more patience than some of the other players.
So I’m standing there yesterday at the first practice, my heart sort of racing, waiting to see how he will or will not fit in with this new group, and I see a mother rush over to her sobbing player. Initially, I think nothing of it–they are seven and eight-year-olds–they still sob from time to time, neurotypical or not.
(Deep inside, I am somewhat glad another child is getting upset because that will make it less of a spectacle if Edward gets upset. I know that might be a strange way to think, but I’m just being honest.)
The little boy keeps crying, although it’s clear that he’s not hurt, and some of the other mothers (whom I have just met) begin to murmur among themselves about the reasons he might be so distressed. Then the coach’s wife steps forward and gently explains that this little boy is autistic. He is actually a twin, and his brother is on the team, but is not autistic. Everyone nods in understanding and returns to their conversations about crock pot recipes.
My initial feeling is one of odd relief, and I say a silent prayer of thanksgiving. God knew what he was doing putting my child on this particular team.
This was a hard post to write in many ways, but as I sit here at 3 am, I am slowly, but surely, beginning to feel a bit more free.
I am tired of skirting the issue like it is something to be feared or ignored or talked around.
So many of you have given me the courage to press on with this by writing about your own children.
I am ready to talk.
Isn’t it fascinating when you see your child leaping forward developmentally with apparent abandon? That is when I know God is working mightily.
The past two weeks have been such for Edward.
Last week we went swimming with two slightly older friends–one who is a fairly skilled diver and swimmer. Edward watched this friend absentmindedly, attempted dives halfheartedly, and later annoyed the friends by splashing them and simultaneously blathering “blah blah blah” in an cloying voice.
I was so thrilled when this most patient child finally told Edward that what he was doing was “dumb” and held up a kick board to shield himself. Edward actually garnered enough self control to stop his mind-numbing action immediately. This is big for him.
A few days later, Edward shocked me beyond belief by laying out a decent dive into the deep end of our neighborhood pool. Apparently, when I thought he was in “La La Land,” he had been watching his friend. His swim coach was equally surprised when he claimed he knew how to dive and then dove off the diving board to prove it.
At swimming lessons the next day we saw a dear friend from kindergarten days. He was with another boy and the two were lounging by the pool watching the lessons, dangling their legs into the cool water.
Edward sauntered up to the pool, took keen aim, and laid out a perfect dive in front of the two boys.
The new boy turned to Edward’s friend and admired, “Wow, that dude’s good! Who is he?”
The friend replied, “That’s Edward. He’s my friend!”
I blinked back tears behind my sunglasses.
Edward is a dude who’s been “good” at multiplication, reading and memorizing. He’s a dude who I’ll wager knows more about the Tudors than most adults. Yet I think this was the first time Edward had ever been genuinely admired by a peer for something athletic.
Then the child who has been terrified to stand on his head and flip over at gymnastics, a child fearful of somersaults and a child who would never consider a backward handspring, began doing back flips under the water in rapid succession.
The next day at gymnastics he garnered more shock and awe by doing an assisted back handspring.
Something is going on in that brain of his, and I am beyond awe.
Still, isn’t that the way God works? He wants to bless us so much more abundantly than we can ever imagine, and so often He comes through so mightily just when life has begun to look rather bleak.
“If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!” Matthew 7:11.
I have more stories of Edward’s progress that I will share next week. In the meantime, I am going out of town for the long weekend and will be back Tuesday!
Thanks to Kia, again, for making Monday manageable again!
1 – Number of teeth Edward lost last week. “My incisors are gone! All I have are molars and canines! I can no longer say the word ‘the’ beautifully! I have no front teeth. The train traveled…hmmm.”
H texted me this up-to-the-minute conversation while I was having dinner with Ashley of Many Sparkling Gems. She looked at me so quizzically, as I’m sure you are too.
Translation: Edward has now lost all four front teeth and can no longer make the “th” or “tr” sounds just like Cindy from Brady Bunch, who employed a tongue twister book in her own cost-effective form of speech therapy. (Would that we all had it so easy!) Later Buddy Hinton, a bully who plagues Peter throughout this episode, aptly entitled “A Fistful of Reasons,” asks to borrow Cindy’s book after Peter knocks out his two front teeth. “The train traveled” was part of a tongue twister. The grand part of this tooth loss is that it brings Edward $5.00 closer to paying me back for the games he downloaded to my cell phone. (Sort of like reading The Wasteland with the notes?)
450 Number of times per day I tell my children not to ‘W” sit…that it will lead to knee and hip replacements in later years…
10 – Number of days my neighbors are gone to the beach and are therefore unable to address the pool water seepage I discussed last week.
6 – Number of days before the “Big Easter Egg Hunt” held at my house…in the mud and pool water seepage. Bring out yer rain boots!
3 – Number of times Edward asked the hostess at our local Mexican restaurant the definition of a composite number. “So, how many composite numbers do you think you could name?”
5 – Number of clay items other children completed during a 6-week pottery class.
1 1/2 – Number of items Edward completed during the same class because he chose to harness all his creative energy into the one “pig-mouse” pictured here. Understandable. (There is also a claim of a penguin, which is the white lump next to the “pig-mouse.” Since it has never been painted, I’m hopeful he’s created the amazingly rare “albino” penguin…)
Behold, the “Pig-Mouse!”
I can’t wait for it to grace my mantle!
Edward to woman in Publix sporting a Scooby Doo shirt: “I like your shirt.”
“Yes, I love Scooby Doo and so do my grandchildren,” the sweet woman countered, smiling at the curly-headed child sporting a soccer t-shirt, shorts and snow boots.
“Well, do you love Barak Obama?” he challenged.
“Well now you’re changing the topic, young man. Yes, I like Barak. I like him a lot!” she asserts, smiling and looking around the crowded store for support.
“So are you a Socialist?”
“Well…no…I mean…No…” she stammers, looking hopefully at H who is busy loading groceries onto the conveyer belt, conveniently ignoring where this conversation is going.
“Do you know the Iranians are building a nuclear weapon?” Edward quizzes. “There are two ways to attack them. One is to use radar. The other is to use bullets.”
“Well, what about talking? I would prefer talking,” the seemingly reasonable woman suggests.
“Are you crazy? Don’t you know Ahmadinejad? Don’t you know he loves evil? Just what do you think you can talk to him about?” Edward challenges.
(It seems Annette Bening hasn’t gotten very far…)
“My, you sure seem to know a lot,” the poor woman murmurs, squirming as she enters her pin number on the console.
To his credit, Edward finally senses the controversial nature of this conversation. He counters with something appropriate for a first grader to discuss with a grandmother-type at a deep South grocery store:
“So, have you seen Star Wars: The Clone Wars?”
During our foray into DC before the Holidays, we stayed at this rockin’ hotel called the Helix. Quite Duran Duran. And child-friendly with bunkbeds that had their own TV/Video Game combo. Add free wine from 5-7 pm for the parents and you have a winner!
I am capable of spending 7 hours in the Museum of Natural History if I can come home to this simplicity.
The place even had child-sized leopard robes, which, of course, Edward had to don and do a fancy dance on the round faux leather coffee table. Good times friends, good times!
It’s no shotgun shack.
And you may ask yourself, well, how did I get here? Let the days go by….
Same as it ever was.
Where have I been? When my dear friend, Kia, sent me the message: “Dood, where’d you go?” I started to wonder myself where the last two weeks have gone, and I’ll have to admit, the wondering stumped me in a frightening way.
So tonight, while my husband has gone cougar hunting (for the real animals, people) with friends for the weekend, I am feeding my children popcorn and donuts, and allowing them to watch 102 Dalmations (mild violence) while I try to catch up. (Thank you KinniKinnick for your awesome GF/CF cinnamon sugar donuts!)
(Yes, I did say cougar hunting. Apparently cougars can be quite a menace, although H has never killed another living thing since, as a young boy, he shot a bird with a bow and arrow crafted out of a windshield wiper blade. I feel confident regarding the cougar population’s longevity.)
So I decided to run through my calendar and pictures for the past two weeks and see what all I actually did accomplish. Here’s the short list:
1. Help Edward prepare for City-Wide Home School Spelling Bee, which included words like “suet” and “concentric,” while simultaneously adjusting to a new developmental psychologist. “What are you drawing, Edward?” she asks as he draws circles encircled by circles, endlessly. “Oh, those are concentric circles…you know c-o-n-c-e-n-t-r-i-c…Sort of reminds me of the little poem, ‘A Thief in the Night, t-h-i-e-f!’ “Yes, well…I…” She looks at me, puzzled. “Why is he spelling everything?” she whispers, scribbling furiously on her notepad. (Glory be, she’s found yet another diagnosis!) “Oh, he’s just preparing for a big spelling bee,” I encouraged. He then regaled her with a long discussion of Cuba and communism followed by questions about positive and negative cognition. “There’s just so much dyssynchronous development going on here…such an amazing cognitive ability while the social…” “Yes! Dyssynchrony!” Edward chortles! “I can’t spell it but I know it means ‘uneven’!”
2. Teach children how to use a napkin properly.
Did I mention we have a new puppy?
3. Celebrate Joseph’s 9-year-old birthday with a trip to Olive Garden. (Remember, it’s a chain-obsessed town.)
Did you know new puppies don’t sleep well at night? And if they sleep in your child’s bed, they will relieve themselves at the corner of the bedspread?
4. Receive training in how to administer growth hormone shots to Edward. Give growth hormone shots to Edward. Every. Single. Night. Possibly. For. The. Next. Ten. Years.
Were you aware that new puppies get sick when fed too many raisins and popcorn? Not to mention the gas that particular combination creates in the newborn canine digestive system…
5. Attend Sue’s “Muffins with Mom” celebration at her preschool while darting out every three minutes to check on the other two boys who are found, red-faced and sweating, pummeling each other with pillows in the youth room while five calm, homeschooled girls watch Little House on the Prairie videos.
Have I mentioned that we have a new puppy and she’s learned how to bark. Really, really loudly?
6. Spend one day at a City-Wide Homeschool Spelling Bee followed by carpooling followed by borrowing every electronic hand-held game known to man in preparation for nine-year-old having two spots removed at a local dermatologist known for two-hour waits. Sit with 3, 7 and 9-year-old in a waiting room while a TV monitor drones endlessly about the latest psoriasis treatments…field endless psoriasis questions: “Do you have psoriasis? Did I ever had psoriasis? Do you think that lady has psoriasis? Look how gross the psoriasis looks on that TV screen! Are those things scabs? Will that Humira help? What does that girl have? Do you think she has eczema? Doesn’t she look like a babysitter we had once? I know I had eczema and so did Joseph! Did we take Humira?”
The questions are wearing me down: “Why can’t you play with that hand-held Star Wars thing? Isn’t that why we borrowed it? Why aren’t you playing it?”
“It’s out of batteries. I think it needs to be recharged. Did you borrow the charger? You know it comes with a charger.”
I rifle through the bag. “There’s no charger! Just watch the psoriasis show until they call our name!”
“Do you think I will ever get psoriasis? Why is the ‘p’ silent in psoriasis? Is it a Latin word? What’s your favorite Latin word? Do you have to know a lot of Latin to be a dermatologist?”
Did I mention we have a new puppy? (Yes, she is peeing.)
Gone cougar hunting. Check ya later!
Yes, almost 10 days late, I finally coerced H into drawing a name for the winner of this grand Sensory Processing periodical.
And the winner is:
Adonya has a wonderful web site, and has also recently written a book so please check out her blog!
Edward woke up during this drawing and is pictured here with his beloved Webkin, “Jet.”
I know. Who sleeps in a golf shirt? (We do…when it’s convenient.)
Thanks for playing!