How Do You Do It (with a smile)? Entry 2

Today's guest post is from Lydia who writes Autistic Speaks. She is a brave and articulate young woman who writes honestly about her experience. I gain huge perspective on my son's reality by reading Lydia's blog. Very often, she puts words to the sensory issues for which he seems to only have behavior. Her explanations catch me in my tracks just before I run out of compassion.

Ironically, the tiger on her banner looks just like another one in the Brookfield Zoo. I have a snapshot (somewhere, pre-digital) of Reid at age 3 busting a gut in front of the glass enclosing "Shere Kahn." How do you explain that sense of humor, Lydia?


I have never raised a child with special needs; I have never even
raised a child. I have, however, spent every day of the past 21 years
affected by autism- not in a sibling, a friend, or even a parent- but in
myself. It must take an unending supply of understanding, patience, and
hope to live with and to love a child with special needs. If it weren't for
being understanding, patient, and hopeful, and if those who love me weren't
the same, then autism would get the better of me.

First, I have come to understand what autism means and how it
affects me. I now know that autism is a neurological condition. Thus,
perceptive differences occur at the most basic biological level; autism is
not psychological nor is it something that I have chosen. I have to accept
that the way I learn about the world around me is different. I can not
control whether or not I have autism, however, I can control the smaller
pieces of the puzzle, such as whether I allow my frustration to build or try
to find my words and say, "I feel frustrated."

Second, I am learning to be patient with my differences. When I go on vacation, my packing list includes sensory toys, a chewy tube, cat pictures, ear plugs, and wrist
weights; all things that most young adults do not even consider in their
daily lives. I want to be "normal," like most 21 year olds; whatever that
entails, because I must admit, I do not know. Whatever it is, I would take
it. But I am trying to learn to be patient and accept myself, autism, ear
plugs, and all.

Finally, I will never give up hope for the future. I don't
expect the future to be, in any way, "autism free," but I hope that I will
continue to learn about autism as my family, friends, and medical
professionals do. I hope that, over time, life becomes easier both for
those with autism and for those who are in any way affected by it. I hope
that, no matter what turns my life takes, autism will never hold my back
from being happy.

The next time you see a family member struggling with a small child,
please put yourself in that parent's place. Others frequently remind me to
be understanding, patient, and hopeful with myself and my own behavior when
it is trying. So, the next time you see a teenager or young adult with
autism acting out while in public, please try to realize how much effort
that person is exerting to hold it together. Try to understand how hard it
is in that moment; try to be patient with the current challenging behavior;
and always be hopeful that the future holds something brighter.

- Lydia

Attitude Adjustment

"Erasing Autism," is the title of the article in Newsweek. The illustration jars my spirit. It would be wrong to cut Reid out of our family portrait. The ultimate exclusion. Equally wrong to eliminate him from the church body or society at large. Kudos to Ari Ne'eman for having the courage to stand up in Washington and defend neurodiversity.

Since they were born, I have felt my utmost purpose as a mother is to assure both my kids that their lives are on purpose and their position in our family is secure. Adoption has heightened that goal in my mind as much as (or more than) autism.

This article comes on the heels of NPR, Time and GQ reviews of Karl Taro Greenfield's book, Boy Alone: A Brother's Memoir, about his brother Noah who is now, in fact, a man alone with aging parents and a brother who will not necessarily be his keeper. While I admire Greenfield's honesty and empathize with his circumstance, I am saddened by the bitterness, resentment and cruelty in his voice. As a mom, I hope to model and instill values that will dictate a different prerogative in my daughter's life as a sibling.

This double assault to my sensibility is a stark contrast to where my mind dwells. It reminds me of a huge victory my daughter scored over the Enemy last summer when she proclaimed God's sovereignty in designing our family.

Arguably, Allie has withstood the most potentially damaging impact of Reid's autism. The demands of his behavior and intervention could certainly be breeding grounds for resentment, perceived neglect, and anger. She would have every earthly "right" to object and could have the most to gain by erasing Reid from the proverbial family album. Oddly, ironically, fortunately, wisely, she does not desire that. Like Ari Ne'eman, the Aspie in the Newsweek article, she is close enough to the reality to be an informed expert witness. She also has absorbed enough of God's truth from the Bible that it is the plumb line for her attitude toward her brother.

Last summer, we found a winning solution to the recurrent and age-old question of how to vacation with extended family. My generous, peace-loving mother rented us our very own place a mile or so away from her vacation home. In her words, "it was the best visit we'd had in 14 years." Not being under the same roof turned out to be a key to enjoying a week together. There was no comparison between her model home "Moor the Merrier" and our "Duck Inn" on the Isle of Nantucket. To each his own. Truth be told, we preferred the sunken sandy threshold and indestructible nature of the Duck to her pristine white slipcovers and fine bone china collector appointments. Can you say, damage control?

We enjoyed lots of different pairings of cousins and aunts without the tension of sharing bathrooms and sleep patterns. My mom claimed one night to herself with Allie--an intentional effort to compensate. Woohoo! Fancy schmancy time alone with grandma to shop in Nantucket town and sleep at the big house under 500 thread count cotton sheets. Score! Reid stayed behind with us in the beater, low-rent, rental shack we'd pragmatically chosen. There was a wistfulness to their departure, recalling what might have been, reckoning what is "normal" and even wishing life were different. We all felt it.

That night, as Allie scampered off excitedly for their girls night out, she remembered she had not said goodbye to Reid. She asked my mom if she could go back in to do so.

My faithful mother has experienced her own loss in regard to Reid's autism and our family's reality. When Allie rejoined her in the car she couldn't help but notice, "Oh, Allie, you really love Reid don't you." Allie said, "Oh, yes I do. He has come so far. I used to wish Reid didn't have autism but now I am glad he does because I have learned so much. I am much more patient than I would be otherwise and life would have been so boring. I wouldn't be who I am if it weren't for Reid." Further discussion about the fruits of the Holy Spirit ensued. Without any hesitation, my meek, sage, spirit-filled Allie, had edified the moment and "taken her thoughts captive and made them obedient to Christ." 2 Corinthians 5:3-5

We learn from children. I learn from Allie. According to the Bible, the Kingdom of God belongs to such as them. Allie's perspective even on adult issues, is an example to us. If the ultimate spiritual rebellion is to think we can make decisions that belong to God alone, then the converse is what I'll strive for instead. The ultimate spiritual obedience is to accept from the hand of God all that He allows in our lives.


Each of you should look not only to your own interests, but also to the interests of others. Your attitude should be the same as that of Christ Jesus Philippians 2:4-6


For the word of God is living and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart. Hebrews 4:11-13



"For who has known the mind of the Lord that he may instruct him?" But we have the mind of Christ. 1 Corinthians 2:15-16

We Did It!

What a day! What an hour! What a group! Six mothers in the San Diego area, acquainted through their children's autism, congregated at the beach. Inspired by Autism File magazine's example and challenge, we each grabbed a friend in order to stage a photo shoot in our city.

Along with hundreds of moms around the world, we were psyched to celebrate and document our camaraderie, triumph over adversity, strength in numbers, love that moves mountains, and our kids abilities and accomplishments.

Have you ever met a new friend who was not a stranger? Among the six of us, many were meeting for the first (or second) time. No matter. Our invisible tattoos matched! All of us had made similar choices, seen beauty in the same light, endured related pangs, been patient for healing, and bear the same badge with pride. Without much explicit sharing or rolling up of any sleeves, we knew each other's life stories--in large part. Amazingly, as the photos illustrate, we left the beach having formed a sisterhood. Women are amazing creatures. And adversity is an amazing bonding agent. Autism is like Krazy Glue.


Look with me through the 3-D super sonic, invisible, tattoo-seeing, infrared glasses to appreciate that one of these women has been widowed for more than a decade, one lives in chronic pain, two have two boys on the spectrum, one has a son in a group home, three have homeschooled, one currently homeschools, one has a daughter on the spectrum, one is in the military, and one adopted twins (ok that one's easy). What I love about the video is the joy that shines through it all like the sun through our San Diego marine layer in the morning along the coast. It's as if the friction of life has caused the glow of each soul to burn brighter.

Autism mums can be a diverse lot. Some are angry, some are militant, some are bitter, some are divorced, some depressed. And yet, some glow. This group of women amazed me as, unbeknownst to even us, we sounded a common chord last Sunday: we don't want pity; we are so blessed; we want to stand up and be counted. As if after a good stair work-out (I've heard), we are pumped with endorphins saying, Feel the burn!



A friend loves at all times, and a (sister) is born for adversity. Proverbs 17:16-18


So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples. Matthew 28:7-9


They will enter Zion with singing; everlasting joy will crown their heads. Gladness and joy will overtake them, and sorrow and sighing will flee away. Isaiah 35:9-10

The Best Title in the World

For most of my childhood and early adult life, my primary aspiration was to be a mother. Still, after all the mellowing that age, reality and experience has accomplished, being a mom remains the title of which I am most proud. Maybe that is why this Autism File project appeals to me so much. As soon as I received it from Jeneil at Rhema's Hope, I got on the line, as it were, to organize a shoot here in San Diego. Oh Lord, "I want to be in that number!! When the saints go marching in..." was my theme song that day.

Maybe it's because of the campaign's edge. It's more Helen Reddy than Hallmark. It doesn't sugar-coat motherhood when autism is involved. As lovely and feminine as these women are, behind each one is a story of struggle, sorrow, hard work, loss, small victories and endless hope. The undefined yet undeniable details of their story make them all the more beautiful. To those of us in the same boat, the camaraderie is palpable. Proclaiming our reality focuses our force, strengthens our activism, magnifies our moxie, and generates gratitude for guts and grit.

The sermon this morning resonated with a related truth. Using the story of Ruth and Naomi as the springboard, our pastor pointed out that sorrow can form our deepest relationships. Both women are widowed, penniless, and destitute. Sharing this struggle bonded them more than any family parties or good times they'd ever had. How true. This would explain why I feel such kinship with each face and every far corner of the earth on this video. Women I've never had coffee with, never walked with, never partied with, but who I feel I know at a deep level.

Of course, the end of the story is that God blesses Ruth's faithfulness (to Him and her mother-in-law Naomi), with another husband, and a child who gives her place in the lineage of King David and Jesus of Nazareth. Not bad for a family that almost ended completely with 2 homeless beggar women!

I pray He will do the same for each of you "autism mothers" reading this. May God bless your faithfulness to Him and your family for generations to come.

Now, when are you taking a portrait in your 'hood?


Do a favor and win a friend forever; nothing can untie that bond. Proverbs 18:18-20 The Message


Don't burn out; keep yourselves fueled and aflame. Be alert servants of the Master, cheerfully expectant. Don't quit in hard times; pray all the harder. Romans 12:10-12 The Message


God reward you well for what you've done—and with a generous bonus besides from God, to whom you've come seeking protection under his wings. Ruth 2:10-12

Hide or See?

It's the morning after...World Autism Awareness Day. Yesterday, I was betwixt and beholden to post something, anything....but not knowing quite what?

I actually struggled all week with procrastination. My husband's absence on a two week surfari and several extra writing projects (Form 1023 for a 501 C3, brochure copy, and website for Banding Together) have combined to erect a sizable writer's blockade in my mind. My expressive language may be delayed but the receptive is graciously intact; I am still reading my RSS feed! Listening to this talk by Jess Wilson's at the Greater Hartford Autism Speaks Walk Kickoff released the floodgates for me:




So, I pray this morning after and all month (since April is Autism Awareness Month), that people will take that momentous first step and be more aware. As Jess says, "awareness is not the end goal but the first step." Like a parent witnessing a toddler take her first wobbly steps, I audibly gasped to open a post yesterday on the Living Proof Ministry blog. To my surprised delight, Beth Moore, the mega-Bible teacher, acknowledged World Autism Awareness Day by sharing the testimony of a mom and a call for prayers in the comment field for others experiencing autism. I love it when worlds collide like that and I hear about autism (my one planet) in an evangelical faith blog (my other zone) or in my husband's surfing environmentalism sphere. Truly, that cross pollination is evidence of growing awareness.

I spoke a couple weeks ago to the Mothers of Preschoolers (MOPS) group that meets at our church. The topic they gave me was "Raising a Special Needs Child." Knowing there'd only be a few in the audience who'd consider themselves in that category (in those tender years), I tried to generalize my points to make them more widely applicable. At the outset, I asked for a show of hands, "how many of you know a child with autism...be it neighbor, cousin, nephew, or classmate?" I was stunned when 80% of the hands went up. Had I known, I might have prepared differently and shared our story with an emphasis on "ways to help a child with autism." Next time:)

As Jess Wilson mentions, this is why we tell our stories, it is why we blog, and why we don't hide in our houses. Our transparency and willingness to be vulnerable in our own circles of influence, are how awareness happens. If the world is ever going to be a hospitable place for our kids to live independently, we need to educate. If awareness is the first step, then the ultimate goal is full inclusion.

I've been convicted lately within our church of ways that I have chosen to cop out and take the easier path of hiding, rather than doing the instruction that must precede inclusion. We practice our own avoidance strategies don't we? First for survival, and then out of habit. For example, my family has not been to an All Church Retreat in 11 years. Reid has not been included with his same age peers in Sunday school since 3rd grade. At that point it seemed easier to keep him with us in the sanctuary, under the shelter of our wings, so to speak. To side-step the unstructured, choatic coffee hour, we've taken the liberty of letting him watch a video in an empty upper room. Not too many people are "aware" of this arrangement; Reid is truly out of sight out of mind, for them.

Granted, it is emotionally draining to be exposed all the time. And educators have a high burn out rate. Lately though I am feeling that in our family, we've reached a tipping point where our "hiding" is doing a disservice to Reid and to others. In the name of self-preservation, I have robbed our friends and community of powerful, life-changing interactions that God may have intended for their personal growth.

Biblically speaking, my son (and everyone of us) is indispensable to the body of Christ. For a time-- in my exhaustion, isolation, and vulnerability to the Enemy--I bought the lie that it was selfish for me to ask for extra staff, a buddy, or modifications in order for Reid to participate in church events. I am beginning to see that without realizing it, I may have denied others the opportunity "to receive the gift of Reid" in the words of our senior high youth director. The truth is: it is actually prideful of me to take care of it myself.

It's the morning after...what have you learned?



The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. 1 Corinthians 12:21-23


God made my life complete when I placed all the pieces before him. When I got my act together, he gave me a fresh start. Now I'm alert to God's ways; I don't take God for granted. Every day I review the ways he works; I try not to miss a trick. I feel put back together, and I'm watching my step. God rewrote the text of my life when I opened the book of my heart to his eyes. 2 Samuel 22:20-22 and Psalm 18:19-21 The Message


So if I, your Lord and Teacher, have washed your feet, you also ought to wash one another's feet. For I have given you an example that you also should do just as I have done for you. " I assure you: A slave is not greater than his master, and a messenger is not greater than the one who sent him. If you know these things, you are blessed if you do them. John 13:15-17

Where There's a Will, There's a Way...to College

Joining the ranks of college graduates this past June was Erik Weber. With the vision, determination, and support of his mother, Sandy, Erik made a way for himself at Grossmont College in San Diego. In his own pace and with some accommodations, he did it! Worth celebrating ! And repeating! Read all about it here.

His success story strikes a familiar chord in three aspects I notice consistently: 1. his mother's never-say-never, find-a-way attitude; 2. Erik's acceptance of gradual and steady progress; and 3. their capitalizing on his special interests.

In a related post, Bev at Asperger Square 8 points to an article by a caring and perceptive college professor about his experience with a student named Fred. Quickly, Stephen Yoder comes to realize that Fred must have Aspergers. It is another great success story, albeit fragile. At the end of the piece he offers a list of lessons learned about Fred and another list about the teacher, including this:

If the incidence of autism is indeed rising, all college teachers might need to learn to make adjustments for these students, who undoubtedly will seek higher education.

How true! Who do you think learned more that semester, Fred or Mr. Yoder?

I have often said that Reid is a great teacher, meaning that he is such a demanding, complicated, (yet undeniably smart) kid that anyone in the position of teaching him learns more from him than they could in any degree program, continuing ed seminar, or years of experience. All rolled into one irresistible ball of fire, he can teach anyone willing to learn the importance of being honest, following through, doing what you say, maintaining instructional control, attention to detail, organizing classroom materials, planning ahead, being flexible, differential reinforcement, you name it.

One of our early, home-program therapists recognized how much Reid had taught her. Wanting to accelerate the learning curve of her new recruits, she donated session time to us so that Reid could develop and break-in her employees. "Iron sharpens iron"(as the Bible says in Proverbs 27:17) and she counted on Reid's mettle to sharpen the skills of her staff. We took her up on the offer!


The teacher searched to find just the right words, and what he wrote was upright and true. Ecclesiastes 12:9-11

I will instruct you and teach you in the way you should go; I will counsel you and watch over you. Psalm 32:7-9

See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland. Isaiah 43:18-20

photo credit: www.hs.wisd.org

Holland's Reprise

Welcome to Holland may be a familiar essay to you. (If so, skip ahead to the sequel which I bet you haven't seen.)

Welcome to Holland is often quoted and handed out to newly diagnosed families. It captures the emotional loss and dismay at that stage of the journey. It also stirs hopes for a new dream. Originally written by Emily Perl Kingsley about her experience with downs syndrome, it has significance to those of us experiencing other diagnoses as well.

Emily Perl Kingsley is the mother of a child with down syndrome. She has done much to improve the ways in which people with disabilities are portrayed in the media. She received many Emmy Awards working as a writer for Sesame Street and integrating mentally and physically disabled children and adults into their format. Her inspirational classic has been reprinted in many languages. Dear Abby runs this piece every October to commemorate National Down Syndrome Awareness Month.

When I shared it the MOPS (Mother of Preschoolers) group at our church last year I was reminded that it is even more universal than that. One of the older mentor "grandmoms" pointed out an application in her life that was not at all disability related. The fact is: managing expectations is a lifelong, human condition. Life takes many twists and turns that often diverge from what we have planned or envisioned. So, whatever your current circumstance, I hope you will pick up something new from this retelling of Welcome to Holland. You can read it below or watch this brilliant interpretive reading of it.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Now, for the sequel which to my knowledge was written by Lisa A. Eicholtz. It describes the relentlessly stubborn drive that we must have (or must develop) as parents of kids with autism. The conviction to never say never, always find a way, and think out-of-the-box until goals are met and skills are mastered one by one, as long as it takes.

When you wake up and find yourself in Holland, you realize it is a beautiful place. But, it's not the place you want to be. So you need to decide...do I stay here and enjoy the tulips and the farmlands? Or do I want to see the mountains and valleys and the beauty of Italy?


We have decided that in spite of winding up in Holland, we really don't want to stay. No offense to Holland, but after awhile, Holland is really no substitute for Italy. So, we get out new guidebooks and we discover that sometimes, you can get from Holland to Italy.

It looks like rough going and the terrain is not clear. And for some reason, there are no flights...we set off walking. We make some wrong turns and get lost--several times. But we persevere. Some day, with the right guides, and the right amount of effort, we will see Italy.

Who knows this better than Jesus, our Lord and Savior, who had Eden in mind as the destination resort for all creation? When sin derailed the agenda, He stepped in Himself to walk us across borders through the "horrible, filthy place" of Earth right into Eternity--which is way more beautiful than Italy.

You have taken account of my wanderings; Put my tears in Your bottle; Are they not in Your book? Psalm 56:8

"For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8-9

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:8-10