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A Walk in His Shoes

May 9, 2013 By Leave a Comment

Tennis shows and soccer ballJesse threw a fit this morning. Why? Because we asked him to put his clothes on. “I want to stay in my jammies!” he screamed. “I don’t want my clothes!!” The clothes were scratchy and cold; his pj’s were soft and room temperature. Later, at the breakfast table, he yelled at me when my dabbing with a napkin proved inadequate to remove the syrup from his jammies. “Get it off!” he howled. “It’s still sticky!” A light touch is like a thousand tiny feathers to Jesse; a warm room is an oven. He has been known to strip completely naked in the wee hours, only to greet our saucer eyes and gaping mouths the next morning with the explanation, “because I was hot!” He prefers dark rooms to light, spicy to bland, movement to stillness. As a child with ASD, Jesse’s world looks, feels, sounds, and smells differently from that of the neurotypical, and he therefore exhibits strong preferences for the things he likes or alternatively cannot tolerate. His brother, Noah for example still cannot eat a meal if there is a candle in eye range, because something about the consistency of the wax that sets him to vomiting.

In recognizing the differences between the sensory processing of ASD and non-ASD individuals, YouTube video footage proved illustrative recently. To the extent it could, it demonstrated what it’s like to walk in the shoes of someone who has a sensory processing disorder. And it gave me a near-instant injection of patience with Jesse. After a lunch consisting of a veggie wrap with hummus (the child can eat hummus by the spoonful, I believe somewhere he was tricked into believing it was peanut butter) I went to put my son in his pj’s (clean, of course – with no sticky residue). I did it slowly and quietly, rubbing his back as I did, bringing the stimulus in his world down to a manageable level. I buried him in his “stuffies” (his stuffed animals) as he requested, and lay with him until he got sleepy. And then I put his tiny shoes back under the bed – the ones that I found could also fit my grown-up feet.

- Sarah

Contact: Sarah@chosenfamilies.org

 

Image courtesy of Stuart Miles/FreeDigitalPhotos.net

Filed Under: Asperger, Parenting, Sensory Processing Disorder, Uncategorized Tagged With: , ,

Lessons from a Scarecrow

May 5, 2013 By 3 Comments

Meet one of my scarecrows. His name is Eddie.*

Eddie the Scarecrow

Eddie the Scarecrow

Eddie is a motion-sensitive sprinkler. When something moves in the garden, like birds or critters, Eddie spouts off. He varies the patterns and duration of his spray each time, to keep his air of mystery—and to keep the birds and critters guessing.

Eddie has a sensitivity knob. His motion detecting can go from a 1 (least sensitive) to a 10 (the wind blows, and he spurts). A sensitivity setting of about a 7½ is sufficient for our tiny garden. So far, Eddie’s doing a great job. I haven’t seen any squirrel-dug holes in the raised beds recently.

Eddie’s sensitivity doesn’t encompass the entire back yard, tiny as it is, so he has a partner. Franco* keeps an eye out from the opposite corner of the yard. Franco is a motion-sensitive sprinkler just like Eddie, with a sensitivity knob and the same job to do: protect the garden from unwelcome intruders.

You’d think both Eddie and Franco’s sensitivity knobs should be set at the same number, right? (Here’s where the scarecrows have been schooling me.) Eddie guards the part of the yard closest to the house, away from the trees behind our fence. Franco guards the part of the yard near the back fence, where the trees’ leaves and branches frequently fall. There’s also a wind chime that hangs almost directly over Franco’s head. Franco’s corner of the yard experiences more movement than Eddie’s does, so Franco’s sensitivity knob needs to be set to a slightly different level than Eddie’s sensitivity knob. By trial and error, we’ve found the best setting for both scarecrow sprinklers, and the garden is well guarded.

The scarecrows Eddie and Franco remind me of my husband and me as we parent our daughter. Michael’s sensitivity knob sits at a different setting than mine does. There are times when I jump to alarm at every little nonverbal cue I think Cami might be giving and I end up hovering (yes, I am a recovering helicopter mom). Just the same, there are times when Michael misses the subtext in Cami’s body language and her feelings end up hurt or misunderstood. Each of us have different approaches and bring different filters to our family life together. We don’t always get it right. Through trial and error, though, we’re getting it right many more times than we’re messing it up. Cami needs both of us, even when our sensitivity knobs are at different settings. Together, we make a good team.

Looking forward to a bountiful harvest,

Candi

*Michael named the scarecrow sprinklers. Just sayin’.

Contact: cassandra@chosenfamilies.org

Filed Under: Parenting, Sensory Processing Disorder Tagged With: ,

Reminiscing (A Photo-Psalm)

April 21, 2013 By Leave a Comment

We’re headed south on another unplanned family trip, this time for a funeral. In addition to packing for ourselves and the dog, and gathering the homeschool supplies and the specific-to-my-eating-plan food, I also attended the Accessibility Summit at McLean Bible Church this weekend. My brain and heart are still spinning from the useful information, the new connections, and the sheer delight of meeting some of my fellow Chosen Families bloggers face to face.

Whewy.

It’s too much for one blog post. It’s too much for one weekend! With no hope of focusing my attention directly enough to give you a readable anything today, I thought I’d share some snapshots of precious moments in my life with my girl in the hopes that you will giggle like I do when I look at them and remember. All through the Old Testament, God told His people to remember what He had done for them, the many ways He loved and cared for them. Just think of this post as my photo-psalm of praise to God, my Rock and my Shelter. He has done so far above and beyond what I ever dreamed possible for me and my child.

From this small scary beginning at 2 days old

At the beginning,
when she couldn’t breathe on her own
and I couldn’t hold her,
You were there.

In every minute of the screaming, You were there.

In every minute of the screaming,
You were there. 

Waiting for playgroup to start, 6 months old

When we hosted playgroup at our house for the first time,
and we didn’t know what to expect,
You were there. 

Playing with Buddy Dog, 2 years old

When she squinched up her eyes and growled at the dog
because she wanted his toy, 

when she let him wear her necklace,

when she let him wear her necklace,

when she played in the bathtub when it wasn't bathtime,

when she played in the bathtub during not-bathtime,
unsupervised with necklaces galore around her neck,

when she buried herself in her toybox and shut the lid,

when she buried herself in her toybox and shut the lid, 

when she climbed into the sink, unlocked the medicine cabinet, and drank the cherry cold medicine, You were there, Lord. You kept her safe.

when she climbed into the sink, unlocked the medicine cabinet,
and drank the cherry cold medicine,
You were there.
Lord, You kept her safe.

When I chose her outfit,

When I chose her outfit,

and when she dressed herself, Your arms were always around us.

and when she dressed herself,
Your arms were always around us.

When she recuperated from ear tube surgery

When she recuperated from ear-tube surgery

and when she prepped for eye surgery, You held us close to You and close to each other.

and when she prepped for eye surgery,
You held us close to You and close to each other.

Through the rough seasons

Through the rough seasons

and relaxing times,

and the relaxing times,

You love us well, God.

You love us well, God.
Thank You for giving us each other to love.

What a good God we serve.
Happy Church Day!

Candi

 

Filed Under: Praise, Sensory Processing Disorder Tagged With: , ,

Neutral Moments and Common Ground

April 14, 2013 By Leave a Comment

Parenting a child with auditory processing disorder sometimes feels like bowling in the dark: it’s difficult to get your bearings. You head in what you think is the correct direction, trust the gutters to keep the ball in your lane, and hope that you walk in a straight line. Without being able to see those little arrows on the floor, you don’t have the perspective to orient yourself at all. It’s hard to enjoy the game when you can’t improve your aim.

Many days have found me at the end of my frustration because I just don’t get my child, and it feels like she doesn’t get me either. I speak; she stares back at me, and I can tell from her blank expression that she hasn’t understood one word I’ve uttered. And I don’t know how to say it any plainer.

When those moments happen, I’ve learned to just back up and try again later. Sometimes our frustration escalates beyond what can be salvaged in the moment. Because I don’t want to lose her heart in the struggle to communicate, I wait for a different moment, and in the in-between, I find a neutral moment to sit quietly with her and debrief our breakdown in communication. Sometimes I forget that her brain can only hold on to two directions in a row, and I give her a list of five tasks. Sometimes she forgets that when I ask her to do something, if she doesn’t do it right away, she’ll forget to do it later because her brain gets full of other things. Those times of debriefing are valuable in learning how we both work best.

Where do we find those neutral moments? In the common ground we share. When it seems like I can’t reach my daughter, and she isn’t coming to me, I take us both to a new location, a safe location where we haven’t been struggling to understand one another. One common ground we share is our love for outdoors and all thing nature. We’ve been blessed to have wooded paths near our home since Cami was a baby. From the time she was itty bitty, we’ve walked together. Not power walks where we walk as fast as possible, but more like meanderings where we wander slowly enough to not miss anything.

Meanderings are wonderful neutral moments for my girl and me. As she’s grown older, the specifics we discuss during our meandering moments have changed, but the subject is still the same: I love you. I want to better understand you, and I want you to better understand me. Where did our communication break down, and how do we adjust our methods so that we hear each other better next time? Sometimes our walks together are filled with words, and sometimes we just practice listening—to the wind, the birds, the trees, the frogs. Consequently, we’ve grown more capable of hearing ourselves, and each other.

We’ve improved our aim.

12Therefore strengthen your tired hands and weakened knees, 13and make straight paths for your feet, so that what is lame may not be dislocated, but healed instead. (Hebrews 12, HCSB)

Grateful for level paths and boundary lines that fall in pleasant places,

Candi

 

 

Filed Under: Communication, Sensory Processing Disorder Tagged With: ,

To Visit or Not To Visit

March 24, 2013 By Leave a Comment

I begin writing this post sitting in a hotel in North Alabama, where Cami’s great-grandparents live. We drove here from Northwest Florida, where Cami’s Grammy and PawPaw live. We flew there from Northern Virginia, where we live.

Stick a fork in all three of us because we. are. done.

This six-day, two-state adventure is specifically for visiting family, some from Michael’s side, some from my side, all from Cami’s side. If we want Cami to spend any time with extended family, we have to travel to see them. Traveling, especially using multiple modes of transportation, agitates sensory processing issues like nothing else I know of. Traveling pushes more sensory buttons than a trip to WalMart. That’s saying something.

For instance, airplane seats are not very wide. Even very skinny people brush elbows with the passengers sitting next to them. Which is fine, unless you’re my daughter and you’re tired and still trying to adjust to Daylight Savings Time plus switching time zones for a week. Then, you don’t want strangers bumping any part of you, politely or not. You just want to hide and be left alone.

Waiting at the airport gate for a maintenance crew to fix the airplane you’re supposed to ride in for your connecting flight can be disconcerting. If you’re my daughter, it can also be b-o-r-i-n-g. You can’t find something fun to do as a distraction because you can’t wander far from the gate; when it’s time to board the plane, you have to be there. You can’t take your backpack off because it takes too much time to put it on again. You have to wear your backpack on your back, not your shoulder, and even that won’t prevent the bag from banging against seats and people because airplane aisles are not very wide.

If you’re my daughter, when you finally arrive at your first destination and your grandparents are waiting for you, you have to hug them. And really, you want to hug them because you love them, and you’re excited to see them. But you have to remind yourself that grandparent hugs are worth the momentary sensory discomfort because you’re just so tired of the sights, sounds, and smells from your already-long day, you really don’t want anyone touching you at all.

And it’s only lunch time of Day One.

If you’re my daughter, Day Two of visiting family means riding six hours in the cramped backseat of a rental car. The economy car sits low to the ground, so you feel every bump like there’s nothing between your rear and the road. After banging your shoulder on the door every time you climb out of the car, it doesn’t take long for you to miss your mini-van’s roomy back seat at home.

Traveling sometimes means sleeping in hotels. Hotels sometimes have scratchy blankets. If you’re my daughter, you have a daddy who requests—and receives—an actual comforter for the sleeper-sofa because he suggests the housekeeping service take it out of an empty room. The poofy comforter is better than the scratchy blanket because it’s softer, adding weight on your body and soothing you so you can sleep.

Traveling means sleeping in an unfamiliar bed, not on your own pillow, not being surrounded by your books and collections. Traveling (this time) means your dog isn’t with you; you’re not in your own house, not in your own space, and out of your routine. Is traveling with sensory processing issues worth it? We could just stay home. So why travel?

If you’re my daughter, the trade-off for traveling with sensory integration challenges includes irreplaceable experiences:

  • Walking around WalMart telling jokes to your PawPaw, who’s one person in your world who loves corny jokes like you do because they make him laugh.
  • Playing Madlibs with Grammy while she works in the kitchen, and loving her belly-laugh when you read back the silly story with her answers filled in.
  • Visiting a little French pastry shop with your dad, and choosing treats to take back to your grandparents’ house for everyone else to try. (The cheesecake is the best, although the pistachio macaroon tastes better than everyone expects.)
  • Touring the grounds of your great-great grandmother’s dilapidated and abandoned house while your mom uses her memories to paint a picture for you of how it used to look, and collecting nature treasures from the grounds and crying when the pine cone crumbles later in the car. (The crumbling pine cone gives you a chance to vent your emotions, though, a reason to cry because you’re at the age when you still think you need an actual reason to cry.)
  • Listening to your great-grandparents tell stories about the Great Depression, remember having gospel singings at their house when they were young, and recount the locations where all their people are buried.
  • Eating sandwiches, homemade French fries, and barbecue potato chips for lunch with your great-grandparents at their dining-room table.
  • Taking a walk around the hotel with your Nana to look for leprechauns on St. Patrick’s Day, and not minding so much when you don’t find any because it’s a beautiful day to just be together.
  • Drawing a picture of a fairy and of a dragon, and hand-delivering the pictures to your aunt and uncle.
  • Touring the rows and rows of antique cookware and car and boat parts at your great-great uncle’s house in the country.
  • Finding fossils in your great-great uncle’s driveway gravel, and hearing the cow across the street moo so loudly, it makes you laugh out loud.
  • Riding back down the road to your great-great grandmother’s homestead to collect a replacement pine cone.
  • Sharing a meal with another aunt and uncle at a restaurant, and enjoying the slider burgers even though they are extra-peppery.

Why do we ask so much transition from our sensory-challenged child all in one week? If we had an endless supply of money and opportunity, we could visit family more often and in shorter spurts instead of packing it all into one busy trip. Michael and I do the best we can with the resources and time we have. So does Cami, who has learned many different strategies to adjust to the transitions involved in traveling. The most effective coping mechanism happens when we return home, when she stays in her room for the entire day, when the only people she talks to are her dad and me until she’s ready to be with people again.

It’s a tricky balance to strike sometimes, this traveling with sensory processing challenges. It takes courage and constant adjustment. The memories Cami has of who she is and where she comes from are worth every single struggle.

Counting as blessings the many family connections we have,

Candi

Filed Under: Sensory Processing Disorder Tagged With: , , ,

So Long Cesspool

February 25, 2013 By 1 Comment

Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.

Ephesians 4:29

Our family is returning back to the basics of sorts.

Unfortunately, my daughter almost six (with Sensory Processing Disorder) spent her earlier years getting yelled at A LOT before we found out she had a hidden disability. Traditional discipline did not work and actually exacerbated her behavior. We were frustrated, scared, and thought we had a defiant child who did not care about us at all. So our default became yelling, and lots of it, despite its ineffectiveness.

While in survival mode and barely hanging on in every way – emotionally, physically and spiritually – we had little ability to be proactive in teaching and modeling how followers of Jesus should interact with one another. We were too busy reacting to her misbehavior and our apparent lack of control (of her and ourselves) clueless of how to help correct and manage it. It was not pretty and downright destructive.

So now, after occupational therapy and a daily sensory diet (exercises and activities to help her body) we are no longer in crisis. Sure we have difficult seasons and our share of challenges, but we have not returned to that toxic cesspool of completely out of control parents and children.

As a family we are memorizing this verse and looking for teachable moments, in abundance as she and her three-year-old brother interact with one another, to intentionally speak words that encourage and give life to one another. We are learning to handle our anger and frustrations in healthy ways that do not hurt the people we love the most and better reflect our identity as God’s children. We are asking the Holy Spirit to help us live this out and to forgive one another when we fall short.

I trust the God of the impossible to help redeem the toxic episodes in our family’s history so we can bring Him glory as we live life with a hidden disability.

~Lynn

 

Filed Under: Communication, Emotions, Sensory Processing Disorder, Uncategorized Tagged With: ,

Worn

February 7, 2013 By 4 Comments

Those who sow in tears will reap with songs of joy. Psalm 126:5

January has left me feeling very worn.

After family sickness before and during Christmas, the return to school was anything but easy for my daughter with Sensory Processing Disorder, who missed four days of school leading up to the Christmas break with a fever.

It took a solid three weeks to readjust to all day Kindergarten and we still have some tears every morning as I drop her off. At least she is no longer crying at night as she goes to sleep, as she gets ready for school, and in the car on the way to school.

It has been emotionally draining to say the least. While nothing we tried totally worked to alleviate the separation anxiety, we found wearing her weighted vest did help to calm her when she was really upset about having to leave me.

Thankfully, her crying now stops within minutes from drop off and does not extend throughout the morning as it had been. Despite a tearful start to her day, most of her school days end up being pretty good. But I often return home from drop off with her little brother worn out from the battles to get her out the door and to school on time.

In the midst of the worse of this struggle I discovered the song “Worn” by Tenth Avenue North and it really ministered to me. I have wept on several occasions while listening to it as it gives words to how worn out I have felt in the day-to-day struggles of my daughter’s hidden disability and in the midst of my failures as a mother.

As I have cried out to God with these lyrics, I have felt His assurance that He is with me and will redeem our struggles for His glory.

Please take the 4 minutes to listen to this song accompanied with the lyrics and let the Lord minister to you as well.

Worn but anticipating songs of joy,

~Lynn

Worn Video with lyrics by Tenth Avenue North

 

Filed Under: Challenge, growth, Parenting, Sensory Processing Disorder Tagged With: , ,

Time

January 16, 2013 By Leave a Comment

[It is] God who arms me with strength, And makes my way perfect. Psalm 18:32 (NKJV)

I am about two weeks behind.

The fall was busy with moving into a new home in mid October, hurricane Sandy, sick children and a nor’easter just heading into the busy holiday season compounded with struggles from my daughter’s sensory processing disorder. Then already behind on Christmas shopping in mid December, I became sick (guessing it was the flu); and despite my best attempts, so did my whole family.

Thankfully none of us were horribly sick, but it did take a full two weeks to feel 100%. So Christmas Eve and Christmas day were spent just our sweet little family to keep the germs to ourselves.  It was very different, but we all made the most of it.

We started celebrating Christmas with extended family on New Year’s Day and again the following weekend. I thoroughly enjoyed each celebration and embraced the joy of the season. And just last week I began doing what I try to do every New Year: reflect on what God has done and ask Him for one word for the upcoming year. Beginning this process (I’m not yet certain on the word) has made me feel like I am finally ready for 2013!

As I have been journaling and reflecting on the past month or so, it occurred to me that what appeared to be behind according to the calendar, was actually on time for me and just what I needed.

While I cannot know for certain, I wonder whether I would have really celebrated and enjoyed Christmas as much if it had been celebrated the same as every year? This past year was NOT like every year for us (a future post or two) and it made sense that our celebration was not the same.

We are not the same people.

So even if our celebrations were on the appropriate days, it would have been different anyway. Trials and tribulations have a way of drawing you close to the Father that forever changes you if you let them.

Realization: I am not behind, but on time according to His schedule as I seek to abide in Him.

On time,

~Lynn

 

Filed Under: Christmas, Expectations, Holidays, Sensory Processing Disorder, Uncategorized Tagged With: , , ,

Hormones and Red Dye and Crowds! Oh My!

November 11, 2012 By 1 Comment

I’m writing this post on my husband’s computer. When I booted mine up to submit my weekly post, it freaked out. It started running its own repair program, which freaked me out. My husband is a computer tech guy in his real job, so I have no doubt he’ll be able to rescue my hard drive and rebuild my computer. Or maybe it will fix itself.

Still, I’m weeping as I type.

It’s been that kind of week. Cami is PMS-ing and I’m menopausal. That’s always a great combination, right? I’ve noticed as Cami’s brain gets flooded with her monthly hormones, there are about two days during the month when we don’t even try to homeschool. Those are watch-an-interesting-documentary or read-a-good-novel days. Those are the stay-in-our-pajamas school days.

In the larger span of our life with her, I thought Cami had finally reached emotional equilibrium. I felt good about our family and our coping skills. Until we went to the postponed-because-of-Hurricane-Sandy Fall Festival at our church this week.

I should have known better. I did know better. But she wanted to go, and this is the last year she’ll be able to participate, and her dad (who was supposed to take her on Halloween before the event was postponed) was trying to meet a deadline. So I took her.

We have over 500 students in our church, and I think they were all there in the church parking lot with both their parents and at least one sibling each. I knew it would be crowded. Cami and I had discussed our game plan, decided how long we’d stay, and agreed to leave when she got overwhelmed. Life is usually crowded, and we’ve worked hard through the years to be able to coexist with the emotional stimuli in the crowded places of our lives. I prepared Cami for the Fall Festival crowd.

I didn’t prepare myself.

Within five minutes of our arrival, I was done. Even outside, the noise from a whole lot of people in a not-very-big space was disorienting. I found myself growing more and more on edge with each passing second. I couldn’t think. Earlier in the week, my good friend said she’d be working at the cotton candy station. I said, “Cami, let’s see if Miss Melisa can make you some cotton candy without the red dye.” We found Melisa at the popcorn station, which was directly beside the cotton candy station.

“Mom, can I still have some cotton candy?”

“I guess so, Cami.” I’d already brought it up, right?

“But what about the red dye?”

When Cami’s cousin was diagnosed with a severe allergy to Red Dye #40 several years back, we paid close attention to Cami’s reaction after ingesting it. We observed that when she eats or drinks anything containing red food dye, she gets grumpy and edgy. She’s learned how to read food labels for herself, and we avoid all food dyes most of the time. We don’t go to Valentine’s Day parties (red candy). People have stopped inviting us to birthday parties (red dye in the icing). The first step in sorting Cami’s Halloween candy is to separate all the suspected red-dye candy from the okay-to-eat candy (mostly chocolate). We order special red-dye-free candy canes around Thanksgiving so they’ll arrive in time for Christmas.

But cotton candy always has red dye in it. And Cami loves cotton candy.

I said, “Well, Cami, let’s think this through. When we leave here, it will be shower time and then bedtime, so I think you’ll be okay.”

“So I won’t have too much time to feel grumpy.”

“It’s up to you, honey, but I think it will be okay if you want to eat some cotton candy.”

God tried to warn me. While Cami was waiting in line for the cotton candy, another young man asked about the ingredients in the cotton candy mix. One of the youth workers read aloud the label on the cotton candy mix carton. Sugar. More sugar. And Red Dye #40. I heard it. I just didn’t pay close enough attention to it.

Within 10 minutes of eating the cotton candy, Cami mentally checked out. Y’all, the cotton candy mist-ified her brain. We spent a lot of time standing around because she couldn’t decide what she wanted to do. We met up with some of her friends, and she couldn’t make even simple conversation. I grew extremely frustrated because she was waiting for me to lead her through the carnival games. Only I didn’t want to be there, so I was waiting to follow her wherever she wanted to go. Only she wasn’t going anywhere.

At one point, I said, “Cami, this is your thing. I’m not going to decide for you where to go. You go where you want to, and I’ll follow you.”

“But that’s a problem, Mom,” she said, “because I can’t decide what I want to do.”

So I started asking her questions:

“Do you want to play the games inside or outside?”
“Do you want to go in any of the bounce houses?”
“Do you want to play this game? Or that game? Or this game?”

“Do you want me to stop asking you questions?”

As she flapped her hands, she said earnestly, “I don’t know! I don’t know what I want to do! I can’t think!”

“Do you want to go home now?”

“No, but yes. It’s confusing because I don’t want to be here, but I don’t want to leave this place either.”

I pointed at the church building and asked, “Do you mean this place,” then I pointed at her feet and asked, “or this place?”

“I don’t know!” More flapping hands and now she was frustrated with me as well as with herself.

I took a deep breath and tried again. “Cami, do you just need for me to decide for you?”

“Yes. Please.” Neither one of us was crying yet, but we still needed to go to the grocery store on the way home. There was still ample opportunity for meltdown.

We left the church and made it through the grocery store with our emotional fortitude still relatively intact. We arrived home, she got in the shower, and I sat on the couch and cried.

What did I learn from this circumstance?

Notes to Self upon Attending the 2012 Fall Festival:

  1. Show up at a crowded event when you think the most-crowded hour isn’t.
  2. Keep in mind any emotional stressors you and your child may already be under (e.g., fatigue, hunger, hormones). Adjust your expectations accordingly.
  3. Keep communicating, even when you’re frustrated by your child’s “non-cooperation” and your child is frustrated with your questions.
  4. Save the cotton candy, full of Red Dye #40, until last.
  5. Or better yet, don’t eat any at all.

If you saw me at the Fall Festival, and if I was rude to you, or snubbed you, or frowned in your direction, please forgive me. It isn’t pretty when I flip into survival mode; you know the mode: where I try to manage everyone and everything, and above all, make sure Cami is safe and feels loved. This time, I mostly managed to save it for my couch in my home instead of spewing my helicopter-mom habit out into the crowded parking lot. Mostly.

At least there won’t be cotton candy for another year, right?

Have I told you lately how thankful I am for this blog community where you know what I’m talking about, even if my words are inelegantly expressed and oddly punctuated? I am so grateful.

Pressing on and looking up, and avoiding red dye everywhere,

Cassandra

Filed Under: Parenting, Sensory Processing Disorder Tagged With: , ,

One Year Living With Autism

October 17, 2012 By 5 Comments

After two years of growing concerns, Jude was diagnosed with Autism Spectrum Disorder last October. (You can read my bio if you you are unfamiliar with our family’s story.) This diagnosis gave my wife and me an immediate sense of relief. We kept saying to each other, “At least now we know what we are up against.” As the English proverb goes, “Better the devil you know than the devil you don’t know.” Now one year into this journey, I want to record where we’ve been and look ahead to where we are going.

Over the past year, we have experimented with so many treatments and therapies that I’ve lost count. While a great number of recommendations helped Jude only minimally if at all, others have made some improvements in Jude’s language, social skills, and behaviors. Our greatest successes have come with dietary changes and supplements. Some sensory-seeking behavior and repetitive behaviors (like dropping rocks directly in front of his face or shaking his head rapidly) have been reduced, if not ended all together. Socially, we get the chance to look straight into his bright eyes much more now than ever before, and he consistently seeks us out for interactive playtime, whereas before we often felt like inanimate props in his own impenetrable world. Although we still want to see him engage with other kids more, overall he is more present today than he was a year ago. The fog he was living in seems to have begun to lift.

For us, the first red flags raised were in the area of language. By two years old, he did not speak any intelligible words, and he understood no more than ten words consistently. Today, Jude understands a good portion of what we say, although exactly how much is hard to determine, and he has also started using some words in play. He is like a non-stop jukebox of Veggie Tales songs. However, he still does not utilize language to communicate his needs or desires.

As we look forward, there are a few areas that we would like to ask readers to pray for:

Sleep. As is typical of children on the spectrum, Jude sleeps very poorly. We have experimented in numerous ways but have not achieved consistent sleep. Needless to say, lack of sleep inhibits Jude’s progress in learning social and language skills, and furthermore, over three and a half years, poor sleep wears on nerves and relationships.

Diet/Biomedical. We have made significant progress in this area, but there remains much needed wisdom to customize his diet and supplements even further. Thankfully, we have an appointment this year with a pediatrician who specializes in Autism. We hope that with her help we can fine tune what we are already doing as well as move forward with some physician-directed changes and treatments as well.

Therapies. Good sleep and the right diet only prepare Jude’s mind and body for learning. Learning actually takes place in therapy. Over the past year a psychologist and a speech therapist taught us to do TEACCH and play-based speech therapies on our own, and just this week we started utilizing a grant to hire therapy helpers. We hope to significantly increase the amount of time Jude has someone “in his face” over the next few months, but we know that this transition will challenge and frustrate him in the short-term.

Long-term. In only two more years, Jude will start kindergarten, and while we are thankful for the great number of educational options available for him, we are equally intimidated by these choices. Also, ultimately, our family desires to serve God again on the international mission field. Please pray for us as we seek God’s guidance in these big choices and seek to balance faithfulness both as parents and as those who are called to gospel ministry.

Filed Under: Autism, Family, Relationships, Sensory Processing Disorder Tagged With: ,
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