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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: , ,

The Right Size

April 28, 2013 By Leave a Comment

Max Lucado remember you are specialAs far back as I can remember, I’ve thought of myself as overweight. Indeed, for many years, I have been overweight. Last summer, I embarked on a journey to reach the weight which God designed my body to carry. I’m well on my way in losing the extra poundage. (Thank You, Jesus!)  In this current season of my life, as I discover what my true body type is, and what styles best suit my physical frame, I’ve discovered another curious thing:

For much of my life, I’ve been content to wear clothes that are too big for me.

Today, for the first time in literally years, I put on an extra-large-sized t-shirt. And it was just a little too big! I have to tell you: the shirts in my closet in recent years have run as large as a 4X. And honestly, I’m not sure I was ever that large.

I just thought I was. Other people in my life affirmed that assessment of myself that I’d made. Overweight people wear plus sizes; I’m overweight; therefore, I must wear a 4X. Those big shirts hid my actual shape and, I dare say, made me look heavier than I actually was. But I wore them because I believed they were what I should wear.

As my body shape changes, wearing the right-sized clothes takes getting used to. I have to make a mental adjustment to my pants snugly fitting me and my shirts showing off my waistline. I don’t have adequate words to describe to you the freedom I’m finding as I give away the too-big shirts and purchase the fits-me-like-a-t clothes that are populating my closet now. I feel beautiful for maybe the first time in my life.

In the same way, finding the right fit for my daughter, and discovering the right size for our family, has transformed the way we do life. I shared with you awhile back the clothing hoops we jump through in order to accommodate Cami’s sensory struggles. Yet the fit I’m talking about here is in her environments, in her activities, in her friendships, in her transitions. Sometimes, it takes a major shift to find where Cami fits and what works for her. Sometimes, it’s as simple as a little tweak here and there in the status quo. Every time, it takes paying attention and being brave enough to say, “This isn’t working. Let’s try something different.”

My friend Betsy used to describe it as being a student of my child. She used to tell me that Cami’s learning glitches­—the dyspraxia, the dyslexia, and sensory processing disorders (vestibular, visual, and auditory)—were gifts from God because they made me slow down and pay attention to my girl. She was right. When we pulled her out of public school kindergarten all those years ago, we took time—time for Cami to heal from the traumas at school, and time for us to figure out who we were and what worked best for our family. We took time to discover the right fit for all of us.

We stopped looking at Cami as a problem to correct and instead embraced her as a puzzle to solve, an intricate, sometimes frustrating but always fascinating treasure to unlock. God forced Michael and I to take Cami out of the box the benchmarks and growth charts and child development books tried to keep her in. He helped us turn our girl loose in an open field and say, “Go be who you are. Let’s see what happens!” What we’ve discovered is this amazing human being who loves God with all her heart, loves other people in a truly selfless way, and loves to learn. We’re also discovering how to look at each other the same way we look at Cami.

We’ve stepped out of the trap of “supposed to be.” We’ve stopped comparing our family and our rhythm of life to other families around us. We’re finding the right fit for us. It isn’t easy. Sometimes, it’s downright chaotic. But every millimeter of the journey is worth it because we’re following Jesus, and I have to tell you: our family is brimming with life. Our hearts are settled and at peace with Him and with each other. We genuinely like each other!

As parents and caregivers, we must be careful—and intentional—to allow our loved ones to be who God created them to be. He made them fearfully and wonderfully, seeing them as His masterpieces, His beautiful, glorious works of art. He made us all that way, infusing us with His image. We are all different. It sounds like a cliché, but it’s true. Each one of us has a unique fingerprint, a unique DNA sequence, even a unique ear shape! God takes such great care to craft us each unique from anyone else. So why do we spend so much time and effort trying to look like everyone else? be like everyone else? do life like everyone else?

Be brave enough this week to ask Jesus to show you the right size and fit for your family. Just ask Him. And when you ask Him, be ready for the most amazing discoveries you could ever imagine.

Now glory be to God! By His mighty power at work within us, He is able to accomplish infinitely more than we would ever dare to ask or hope. Ephesians 3:20, NLT

Flattening boxes of fear and expectations, dancing in fields of grace,

Candi

Contact: cassandra@chosenfamilies.org

Filed Under: Expectations, Journey 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: , ,

Microwave Cinnamon Toast (a photo essay)

February 3, 2013 By Leave a Comment

Did you know that when you microwave a piece of bread that is buttered and sprinkled with cinnamon sugar,

it sticks to the plate—the plate that cracked in the cooking—and

it won’t fall off. So it really is worth the time to use the toaster oven,

if you want to actually eat your cinnamon toast.

Learning useful lessons every day,

Candi

Filed Under: FUN, Homeschool Tagged With:

Sometimes I’m Slow

February 2, 2013 By Leave a Comment

Three years ago when my oldest son married and moved out of our home I was embarrassed to realize how little he could do for himself. He couldn’t cook … anything. He couldn’t wash his own clothes. And, we won’t even get into money management. I don’t blame him for those deficits—I hold myself responsible because those are things I should have taught him to do before he left the nest.

At that point I decided that all of our children should learn some basic self-sufficiency. So, they were going to begin getting up to an alarm clock, preparing their own school lunches, washing their own laundry, and we would increase the amount of their allowances to give them enough spending money to pay for their own snacks on the way home from school if they wanted them.

I should also tell you that I am not a morning person, so I don’t do well with getting up and preparing breakfast for the family before school. If there is going to be a family breakfast, it will be prepared by my husband who rises with the roosters (most mornings). But, most mornings it is more of a fend for yourself kind of thing. That is where this story really begins.

Stephen (our almost 16 year old son with AS) sets his alarm and gets up at 5:30 every school morning. The rest of the house is quiet. He does this so that he can take a leisurely shower (and steal all the hot water, even though he would never admit that.) After he showers and dresses he goes to the kitchen to prepare for breakfast. First he decides what to have for breakfast. I think he usually has frozen waffles. But, this morning we were out of frozen waffles and he had to use leftover homemade waffles. He begrudgingly prepared and ate them. But, as a result of the deviation from the routine it was 6:55 and he was just finishing his breakfast. Lunch had not been prepared and he had not yet brushed his teeth. (He can’t figure out what happens to all of the time—almost 1 ½ hours to shower, dress and eat!) He and his father usually leave for school between 7:00 and 7:15.

Normally, I would have stepped in to help save the day. But, after a discussion we had yesterday about how mom always helps him when he is short on time, I decided he had no reason to change his behavior. So, today when he commented that I could help him, I said, “no, I’m not going to.” To which he jokingly replied, “Why, because you don’t love me?” And I answered, “Because I DO love you!”

Sometimes I’m slow to learn, but I do eventually get it! It took 18 years with my first son. But, now, I think I get it.

~ Louise

Filed Under: Asperger, Parenting, Responsibility, Uncategorized Tagged With: , ,

“I did the best I could” – NOT

January 29, 2013 By Leave a Comment

As Christian special needs parents, we probably beat ourselves up more than most. We are painfully aware of our parenting failures, inappropriate reactions to our loved one’s behaviors, and yes, flat-out sin. But then there is the world around us, who oddly want to promote us to sainthood (right up there with Mother Teresa) and put us on a pedestal just because God decreed our journeys would include living with disability. Randy Newman, in “Applying the Gospel to Parenting,” has a profound word for us. Check it out.

http://www.randydavidnewman.com/2013/01/23/applying-the-gospel-to-parenting/

Peggy

Filed Under: Parenting, Uncategorized Tagged With:

Heartwork

January 28, 2013 By 1 Comment

As parents of special needs kids, it is easy to get bogged down with therapy and numerous additional appointments. Tending our child’s heart may be swept aside. Not that this is our intention. But there is only so much emotional and physical energy each day.

I felt convicted to pray consistently for God to work in Jonathan’s heart. Not elaborate or laborious praying. Just simple dialogue. I began asking Him for ways to bring up His name naturally to Jonathan. To share one attribute of His character that I see reflected in his heart as well. Weeks went by. I felt peaceful about the way Jonathan began to ask questions and open up more freely with his own thoughts about God.

In the van after carpool one recent afternoon, Jonathan’s questions turned to heaven. What is it like? What if we get lost up there? How will we find God? I carefully explained that the wonderful thing about God is that He knows just where to look and find us. We don’t have to look for Him. He comes to us. Jonathan pondered that. I shared that God is building a special house, just for Jonathan. Sunlight paled for a moment compared to the bright smile that exploded on his face. Really? A home of my own? Do I have to share it? I smile, not missing the quiet thoughts tumbling around his mind. At six, he is the oldest of my four children. He often covers his ears with both hands and shouts we have too many children in our house. He expresses in those moments sentiments I dare not admit out loud, but think quite regularly myself.

Yes, Jonathan, a home all your own, and you only share it if you want.

So how do I get to heaven, he wants to know. I respond that when you die, if you love Jesus and have asked Him to live inside your heart, you go to heaven to be with Jesus forever. Oh. He immediately follows with, have I done that yet? Not yet. Can I do it now?

Absolutely! So he did. And my precious son is now my little brother in Christ.

My prayers continue as I ask God to grow my son’s love for Him and His truth. May all our children choose to walk in the truth and purity and righteousness of our Father. And may He grace us to do the same.

~ Rebekah

Filed Under: adoption, God's presence, Parenting, Prayer, Uncategorized Tagged With: , , ,

The Waiting Game

January 19, 2013 By Leave a Comment

I’m savoring the not-knowing.

 

The waiting. The anticipation. I can identify with every parent of a neurotypical child who is waiting for that college acceptance letter.

 

We’ve been on a different journey our whole lives with Dan (18, HFA, not Aspergers) – the road less traveled -  and we always will be, I guess. But this particular waiting time – well, I feel connected. I like it!

 

The military veteran part of me wants to take charge, do something, call the college: what’s the status of my son’s application? I’m his legal guardian, you can tell me! But I’m holding myself back, because I am relishing this common experience. But when the waiting is over, if we have a positive response from the one college he wants to go to, I’ll join the sisterhood of Empty-Nester Moms Who Have a Kid in College. And he won’t be in Special Ed anymore, he’ll just be a college freshman. Wow.

 

That letter can take it’s sweet time, while I bask in this moment and thank God for it.

 

~ Danz Mom, Peggy

Filed Under: Autism, college, Parenting, Uncategorized Tagged With: , ,

Of Anticipation and Anxiety

January 19, 2013 By Leave a Comment

I have realized something lately.  Anticipation and anxiety are two sides of the same coin.  I never quite realized that before.  I feel a little silly to say that but it is really a revelation of late.

We have journeyed with our son, who has hidden disabilities, for over a decade since diagnosis.  We have been through 14 IEPs, 4 Triennials, 3 Superintendents, 3 Special Education directors, several Administrators, several case managers, and countless
teachers.  Woo.  Makes me tired just thinking about it.

We are now at the college prep stage.  SATs done, Senior year, and applications sent. And we are waiting.

The college of his choice is supposed to notify him this week if he has been accepted. And nothing. Every day I go to the mail box for a letter and nothing.  It is painful.

I find myself swinging between quiet, peaceful trust in God’s faithfulness and anxiety-filled begging of Him to be merciful and make this a HAPPY moment instead of just another dreaded learning experience. We have had our share of those in this journey and I have so wished for this to be a happy moment for him.

And I find this new realization in the midst of it all… that anticipation and anxiety are two sides of the same coin.

When your life is filled with happy, typical moments and you are waiting for something, you tend to do so with  ANTICIPATION.  This was my very typical growing up experience.  I rarely ever experienced anxiety or worse – dread.  I had no reason to anticipate it.  Life was generally good.

But having walked this journey with hidden disabilities and the painful daily experiences that often accompany, I am now acquainted with grief, and his all too familiar friend – ANXIETY.  This is new territory for me. I have learned new things about myself and God in the midst of this walk.

So today, I am waiting for the letter.  And reviewing Phil 4:6-7 repeatedly in my mind: “Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.”

God has been so faithful to us at every step along the way in this journey. He has not protected us from the grief along the way but He has walked with us in it.  He has given us grace through it.  I KNOW He will walk with us in this moment as well.  If our son is accepted, He will prepare His heart for transition.  And if he is not, He will provide grace and direction for next steps to take.

Two days after I wrote this, the letter came — a deferral of decision.  He is crushed. No amount of reassurance that this is not a rejection will work today.  So we will continue to walk it out and pray.  God’s good plan will be clear in time.

Waiting,

Shannon

Filed Under: Anxiety, college, Parenting Tagged With: , ,

Foolin’

January 10, 2013 By 1 Comment

As the New Year dawns on a cold morning, I am lying in bed, willing myself not to hear the yelling and scuffling down the hall. Matt is still sleeping, mouth agape. He told me once that he could fall asleep on a set of bleachers during a basketball game, having perfected the skill during high school and a run of sporting events he shared with his two brothers. He can also turn off his hearing at will. It must stem from the same neurological pathway in his brain – the one that lets him not hear kids outside his door though they’re hollering at each other in full voice.

I, on the other hand, have mother ears. The kind that let you hear your crying child at the end of the hall, through two closed doors, over the hum of a box fan, in the middle of the night. So over the growing din of that morning, I heard a little hiss of something over the carpet, attended by a tiny crackle of paper.

The kids were sending us notes again, I thought. And then I threw a pillow over my face and pretended it was still only four in the morning and I had 3 hours more to sleep.

When Matt and I finally uprooted ourselves from the bed approximately 20 minutes later, I found, as I had suspected there would be, a note at the bottom of our bedroom door.

“DEAR MOM AND DAD – I HAVE RAN [SIC] AWAY FROM HOME. SIGN [SIC] NOAH”

Aw c’mon, Lord! This ALREADY? I’m only seven hours into the New Year!

I bolted past Grace and Jesse in the hallway, screaming, “Where is your brother?? Where IS NOAH!?”

I yelled downstairs into the basement, pulling on a coat over my pajamas at the same time. “NOAH!”

That was when he jumped out from behind the couch screaming, “SURPRISE!”

Now, the time between my reading of his note to Noah revealing himself was probably a minute or less in length. But a minute of suspended heart rhythm, a minute of terror seizing the gut, a minute of “what do I do next?” is a minute too long. It was a minute that probably took six months off my life on the back end. So I’d like to apologize in advance to Delores Hornstein at the Shady Oaks retirement community, because as it turns out, I’m not going to make that shuffleboard tournament after all.

I’m panting now, doubled over in the kitchen. Noah trots over with a gap-toothed grin. He has no concept of why I am worried.

“NOAH! Why did you write that note? I don’t understand….”

“’Cuz I was foolin’ ya.”

Foolin’ me into thinking he’d left me forever. I’m remembering now when Grace was a tottering infant and Noah compulsively rubbed her head because (1) it was squishy, and (2) it made her scream, and he “liked it.”

That mind blindness of his is a real *****!

“Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.” (John 14:27)

Do not let your hearts be afraid when you think your son has disappeared, but instead, remind, remind, remind him of what other people could be feeling as a result of his actions. Instruct, instruct, instruct him on principles of safety and awareness. Even when he’s foolin’.

- Sarah

Filed Under: Anxiety, Asperger, Challenge, Parenting, Uncategorized Tagged With: , , ,
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