Category Archives: Special Needs

Living with CAPD

Central Auditory Processing Disorder (CAPD) is a neurological issue affecting an individual’s ability to process sound. Normal auditory screenings, designed to measure the pitches or frequencies a person hears and the volume or intensity a person hears, will not indicate CAPD; in fact, people can have normal hearing but still have CAPD. An experienced clinical audiologist executes a specially designed battery of four tests to rule out hearing loss and identify neurologic sound identification patterns that indicate CAPD. Usually, these tests cannot be run until the person is older than seven due to the level of interaction required for diagnosis.

Some sample indicators of CAPD that a parent may notice include:

  • Prefers conversations or entertainment systems to be louder than most peers
  • Requires frequent repetition of new words to understand them
  • Confuses similar sounding words
  • Interprets speech quite literally
  • Late development of speech

CAPD is a disorder recognized by ADA, so there are protections under the law. Currently, kids with CAPD can receive accurate diagnosis with some treatment. However, there are individuals with CAPD who would not be diagnosed because they were educated before CAPD was identified as a disorder.

Enough of that!

I could go on and on about all the therapies and issues. I could blast all the older generations that painted people with CAPD as lazy, stupid, illiterate. But that’s not my goal.

I want to encourage you to see the fun you can have with CAPD. Yes, you will miss conversations, and sometimes you will be in trouble over socially inappropriate responses. But there are times when you can sit back and enjoy the humor. I would not be surprised if malapropisms arise from people with CAPD trying to learn to process sound and communicate with the world.

I and one of my daughters are both diagnosed with CAPD. She got an early diagnosis, and I was 40+. In the text below, I will list the original or intended text in black, the text we heard or said in blue, and comments in italics; I will also try to stagger for ease of grouping thoughts.

 

Bringing in the sheaves! Bringing in the sheaves!
Bringing in the cheese, bringing in the cheese…
This is mine. I never understood why you would want to bring cheese to church, and the glares of little old ladies didn’t clarify it for me.

 

“It was nothing like that, penis breath!” — Steven Spielberg, ET
It was nothing like that, peanut breath!
This is mine. My father was much happier with my interpretation as I was not yet a teen and he didn’t have any explaining to do.

 

“The leader of the band is tired, and his eyes are growing old.” — Dan Fogelberg, Leader of the Band 
The leader of the band has died, and his eyes are growing cold.
This is mine. My version is accurate to life not art, but somewhat more depressing.

 

“Karma karma karma karma, karma chameleon / You come and go, you come and go / Loving would be easy if your colors were like my dream / red gold and green, red gold and green ” — Culture Club,  Karma Chameleon
Karma, karma, karma, karma chameleon /  *inaudible syllables, inaudible syllables, inaudible syllables* / With golden dreams, with golden dreams
This is mine. For the shower, it was fine. However, in junior high music class, it was so embarrassing.

 

Make me Venison to eat, mommy! 
Make me Vaseline to eat, mommy!
It was the middle of December. My daughter kept asking to eat Vaseline. I did a ton of querying and followup to determine that her request was for the meat my mother had made us.

 

May I have cinnamon on my applesauce please?
May I have synonym on my applesauce please?
This again was my daughter’s. While synonyms are the spice of good communication, they don’t help dessert taste better.

 

A New Attitude

Author’s Note: About four years ago, I had a Facebook connection who wanted to collect essays about the lessons parents of special needs kids had learned through parenting their kids. I agreed to participate. However, I’ve not heard anything more about the status of this piece. To date, I have not signed any releases relinquishing copyrights, nor have I seen any copies of the published collection. I am making the assumption that therefore nothing has happened with the essay. However, just in case, I am going to include some of my comments in response to what I had written oh so long ago it seems; this should make it a different enough piece I hope.

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A long time ago, if anyone had told me that I would not be focused on my career (let me qualify: I do care about my career, but I am not the 80s image of the career woman) and that I would pour myself into three kids with “special needs,” (my youngest has Aspergers, and my twins have a host of neurological impairments resulting in multiple learning disabilities), I would have laughed. (Special needs is a broad category that encompasses the obvious disabilities like Downs syndrome and cerebral palsy as well as your more hidden issues like autism spectrum and ADHD and intellectual development disorders.)

Time and circumstances change you. The first roller coaster was preemie twins. I learned to trust God more and more. This was the first act of forgiveness. My original ob-gyn refused an early ultra-sound, so we didn’t know I was carrying twins or that they had twin-to-twin transfusion or that they would spend the first two months in a NICU. I had to forgive him, not because I wanted to, but because I didn’t want the anger to cloud my judgment where my twins were concerned.

Over time for the twins, there were all the specialists who kept telling me the twins would catch up eventually. Therapies were added and subtracted on a yearly basis, all with the comments that they were progressing. They did hit a brick wall intellectually, emotionally, and physically. When the psychologist who saw them at 12 asked me what I was expecting and why I seemed disheartened by the results, I wanted to scream.

“You and your kind lied to me. You all lied to me. You gave me false hope. You kept telling me they were progressing. The only thing that is crueler than not knowing is false hope. I like to look things in the face, know them for what they are, and deal with what is. You stole that from me.”

Instead, I took a deep breath. I forgave them all—the pediatrician, the developmental pediatrician, the school professionals, the original ob-gyn (after all, if he were on the ball, we could have done something)—again, I did not want my judgment clouded as I faced the possibility they would not live alone and would need a sheltered environment, which may not exist because they are just shy of most criteria for that kind of help. (Actually, they are doing well. They do learn, just at a slower rate and with different techniques. We are looking at a host of post-secondary options. The future is much brighter on this facet of the truth diamond.)

Sandwiched in there was the birth of my daughter with Aspergers. (Yes, in the US, this diagnosis no longer exists, but we won’t go on that soapbox.) Like my twins, she was slow with her development, but just a hair faster than her sisters. We got her all the therapies, which again were added and subtracted with the same comments. An educational psychologist working with her sisters’ developmental pediatrician asked me if I thought she had autism. I told him firmly no. Actually, I was thinking: Hell, no. She wants to be with people. She talks. She doesn’t run from people. She’s fine.

That moment haunted me for a few years, as my siblings tried to tell me autism knowledge had changed and she could be autistic. After some parents of autistic children picked my child out of all the children, I surrendered and had her evaluated.

She has Aspergers. The trichotillomania (hair twisting and breaking…and in her case eating) (This is now conquered through appropriate therapies!  YAY! 😀 ), the constant talk on particular subjects to the exclusion of all else, the incessant humming—all were stims or expressions of emotional turmoil that she did not have words for or could not recognize.

Also sandwiched in there was a divorce early on for various kinds of abuse. (God is good all the time; He is moving in my ex’s life, and my ex is wrestling to become a better person than he would have been had we stayed together. Did I just write that?!?) The struggle to admit everyone who told me not to marry combined with the shame and guilt of knowing what I had put my kids through drove me to my knees, figuratively and literally. My pride and heart were broken. I had to do a lot of soul searching and therapy to figure out where I was broken and get fixed. At first, it was for my kids, but as I started to feel human again, it changed and was for me.

The hardest one…to forgive me. I have not been able to do this. I struggle with seeing all my bad decisions (like leaving chemistry as a career, marrying their dad, thinking I knew better than professionals) having consequences on my children and family. It’s like a wound that gets opened daily. It never heals. Yet, if I am to be healthy in mind, body, soul, and heart, it MUST be done. How to do it?

For me, the first step was letting go of my dreams and my vision for my children. They would never go to college. (Well, that may be changing.) They would never have a good job, a big house, and a large salary. (Yes, I bought the American nightmare for a while.) And that is focusing on the negatives.

The second step was to look with the proverbial rose-colored glasses, to see so much more clearly the matters of the heart that affect eternity (Actually, it’s more looking with mercy glasses or my Father’s eyes.). My children, for all their issues, have a love for God and His people that is unshakeable. Despite a nasty custody battle, they are accepting my encouragement to respect their father and his family, and they are praying for true conversion and peace in his and his family’s hearts. (And God is answering them.)

Their faith can move mountains. My oldest daughter prayed my mother’s migraine away one day a few years ago. The only type of headache my mother has had since then has been sinus, amazing because my mother’s migraines were legendary. As kids, if the door was locked to her room and the house was dark, we knew to entertain ourselves quietly and stay away until she felt better. My youngest asked St. Joseph’s intercession with his foster son Jesus for a step dad; less than two years later, I am happily married to a good, decent Christian man (not to say we don’t have our moments).

They have strength I don’t understand. At the end of my rope on a particularly bad day when I was sandwiched between an Aspergers-related meltdown and my older twin’s self-loathing and hatred session filled with tears, my younger twin (technically, middle child) asked me which of her sisters she could help. I sent her to my youngest daughter with instructions on deep breathing and constant, rhythmic back rubbing. My middle daughter made me want to weep. Emotionally under 10, she stepped to the plate when I needed someone most and gave me courage and energy to deal with the older twin.

These two steps began the journey of a lifetime. I am working on forgiving myself. I am so glad for some of my Protestant friends. They have taught me forgiveness is not a feeling. It is a choice. You must revisit it daily, and sometimes every second. I am a much different person because I let go of what I wanted and started looking at what really matters. Forgiveness—not just for others, but also for me—is part of that package. Yes, I have bad days where I don’t get the balancing act right. But I just go back to the first lesson in forgiveness, especially for me.

Through forgiveness, I have learned so much more. First and foremost, I’ve stopped assuming and using my assumptions to form judgments on other people’s behaviors and actions. I’ve started thinking outside the lines to learn that motives may be different than what are perceived. From dropping judgment, I learned both mercy and humility:

  • Mercy because we never know what another is truly thinking and because appearances can deceive
  • Humility because you never know if a person is having a rough life with circumstances far worse than your own

Finally, I learned to love another person for who they are, not what they can do for me. The work-a-day, career woman lifestyle left me hard and jaded inside. Having three kids who would probably never contribute more to society than a smile and a good attitude makes you see things differently. If you’ve been there and someone else hasn’t, the other person will never be able to fully understand the metamorphosis that goes on inside of you. I often take hope from the statement, made by a parent on one of the numerous Facebook support groups I participate in (sorry, don’t remember the person’s name), that my children may never cure cancer or the common cold or win the Noble Peace Prize, but someday, their smiles or spontaneous hugs just might stop that individual who would do those things from committing suicide (if I can buffer them from the bullies trying to create the same fate for my kids).

A final thought—are children part of the equation? Must you have children to learn these lessons? In my case, only having other humans relying on me for their protection and well being was what taught me these lessons. I truly believe without my children I would not have learned what I have learned and my emotional and spiritual life would be quite poor.

Parenting like forgiveness is a process—give it time.

Zippy Take Over, #2

Zippy not sleeping 111514Whoa! It’s been almost two weeks since I’ve been here. I’ve learned some new words watching my humans typing and watching the big rectangles. I am so looking forward to sharing some thoughts in some different areas.

Day and Night

These humans are so crazy. They have their activity all mixed up. They should lie in their beds in the sun during the day, getting warm and rested. Then, when it’s dark and cooler, they should move and do things. The one older female is especially mixed up; I can’t even get her to slow down and scratch me sometimes during the day. I’ve watched all the human food dishes and human food things flying all over because of this older female, and I don’t know how to tell her this, but she really smells better to me when she goes slower. I think the older man is closer to right with his activity levels and speed (besides, he got me good treats, so he has to be right).

Communicating

I’m frustrated. They have those funny paws they call hands and they’ve been doing all sorts of pointing and gesturing. I’ve been learning that if I do certain actions like sit or stay or get down in response to the gestures, and I do the same action with the same gesture, they all get crazy happy.

I don’t have those paws. I’m trying to find ways to communicate. I’ve learned that if I touch my nose to a certain door I can get them to take me outside (not that that’s been real useful with the cold and snow).

I did make my throat vibrate, and I watched the one young female human give me my seat on the end of my couch rather quickly; however, the older female human picked me up, put me on the other end of the couch, and gave the seat back to the younger human, and then the older human turned her back. I must have not communicated clearly, or maybe I missed something.

But my sad eyes don’t get me more of my food, and my sad eyes don’t get me human food either. I’m so confused. I also can’t seem to get the particular human I want when I want her; these humans don’t seem to read the speed and pattern of my tail wag very well. I wish I had a better way to tell them who and what I want.

Cats

I really thought I made it clear at the other place I lived that I didn’t like those four-legged furballs humans call cats. I have watched these cats just sauntering all over my yard, and they won’t leave. I don’t understand why those cats can’t get their own furever homes away from mine. At least I do have a clear wall between me and them.

My Yard

I have this huge yard the humans walk me around. I love every inch of it. There are so many places to stop and smell things that I get so excited I have to pee. They have these funny artificial trees that are hard and not shaped right at all; those are the best to pee on because my human looks like he or she hears something when I do. There are these miniature trees with bright red puffs or maybe some white puffs; the humans don’t seem to like it so much when I pee there (although I have tricked a younger human female into letting me). My favorite place to poop is right where those cats make fun of me.

Family

I am so excited. I learned that I have another dog cousin. I didn’t think I had any dog family, but it looks like he got adopted like I did. He and I didn’t talk much, just sniffed each other; he doesn’t seem to understand that I can’t get his barking and snorting. ‘Gins was so much fun. He even shared his water dish with me, and his human gave me something white and tasty called cheese. I hope I get to visit him again soon.

 

Zippy Take Over, #1

Hi, hi, hello, hello! I’m new to the scene. I decided to borrow my human’s keyboard.

I just moved in last night. It’s so much better here.

I used to live in a big fenced in yard with a lot of other four-leggeds like me. We did a lot of outside games like “Chase and Catch” and “Nip the Tail.” We didn’t have very many two-leggeds that came to play. Well, maybe I didn’t.

I had a hard time. I never heard anything and my ears hurt all the time. They took me far away to see a special V-E-T; I went to sleep, and when I woke up, the pain was gone, but I still didn’t hear. It’s hard to watch all the other four-leggeds moving their mouths, knowing they can talk and I can’t. Sometimes, the other four-leggeds would forget I couldn’t hear and sneak up behind me; I got a little snappy then.

A moon or two ago, these four female two-leggeds came to visit. I was so excited, but then they went away. It was nice to play, but I didn’t know why they didn’t take me with them. I was also kind of mad because I had to share them with two other dogs. I was also scared because they moved their mouths like they were talking, and I couldn’t hear them either.

Another few moon changes, and they came back. They brought a male two-legged with them. They played with me. Again, I had to share, and again they didn’t take me with them. It was still so quiet and I couldn’t yell, “Take me! Take me!” because they wouldn’t understand.

The last time the four two-leggeds came back, they visited just with me and one other dog. When they visited me, they did different things with their hands. When I did a certain move with my butt to a certain sign, I got another sign and lots of attention (these two-leggeds have funny paws…they make two nails come together and the other three stick up when I do the right thing). They shake that funny thing with their hands when they try to make me look at them (I know better… they want to make me do stuff, so I just look away).

They left, and I didn’t hear anything. I was sad. Then yesterday my food bringer put me in her wheeled wagon. We went to this house. The four two-leggeds were there. The one put a stick in her hand and waved it over these papers, and then my food bringer left.

I was scared, but the two-leggeds were so full of energy. I got so much attention. Then two of the four put me in another wheeled wagon. We went to this big place like a kennel. Only it wasn’t a kennel; it was a magical place full of lots of toys (which I don’t really like) and food (bags and bags and bags…it could feed the whole pack of us) and other creatures.

Unfortunately, to get to the good part (the food), I had to get a bath. I came out all yucky smelling (I think I’d rather have mud). But then they got me beds and food and funny things with a bird head on them.

When we got back to the new house, I was so tired. I ate and slept. I wasn’t at all zippy like my new name. See, there’s me in my new bed…not so sure I like the spots because they remind me of cats. Eeewww.

Zippy at end of first day

I woke up, and it was dark and quiet, too quiet. I have my own room, and the door was closed. Why can’t my paws be more like the two-leggeds? So I got creative. I jumped, and I missed. I jumped again, and I missed again. Finally, magically, I was catapulted to other mysterious rooms that don’t smell like me yet. Some had good smells that made my drooling worse (ladies, please don’t look). Other rooms had lots of little stumps for me to crawl through. Others had piles of blankets and funny shaped covers to crawl through and burrow into (I think these belonged to the three younger two-leggeds.

I ran room by room. Each two-legged was lying on a mat in the air, and they were too quiet. If I’m up, shouldn’t they be? Barking isn’t very gentleman-like, so I tried to quietly whimper. Finally, I was with the two older two-leggeds. I got sneaky and quiet and tried to crawl up on their feet. It worked for about 20 slow tail shakes. Then the female one got up and put me back. *sigh* I had to start all over, which I did. Three or four times. The female didn’t seem happy.

I still have to work on getting used to all the rules. So many places smell so nice, but I get pulled out when I show up. I also have to learn what those two-leggeds mean with those things they do with their hands; they seem to take it well if I make a mistake, so maybe by next post I’ll be able to share this non-talking language.

I’m still a little scared that this isn’t my furever home because it’s nice. I get out on a lot of little walks every day, and my yard is so big even if I can’t run without a leash. I have these color shapes that they throw for me; I think I’m supposed to bring them back, but I’m different: I just like to look at them. I’m kind of nibbling my paws and getting itchy all over because I’m scared and excited all together. (I think the one human noticed. She picked up this funny, black bone, and I heard the word V-E-T.) But for now, I think I will relax; I could be a lot of other bad places.

“I don’t know, I don’t know where I’m a gonna go when the volcano blow”

I was recently blessed to go out with a Facebook friend and her son to lunch. Although we grew up in the same small town, Tina and I ran in different circles for many years. Then as our children were born and started growing (and getting diagnoses), we started rubbing elbows more and more. It was finally time to just spend some time talking (over food of course).

I remember the first time I saw Tina with her son Logan. A denominational church was doing a special service for parents with special needs children. My mom and I had taken all three of my angels. I watched Tina walk in, hand carrying Logan and a diaper bag and an oxygen tank. I must have done the whole “tired-mom-with-spasming-brain” stare, because she walked over and asked a few questions to determine that we had indeed gone to the same school.

As she spoke, she shared with me that Logan was born with a chromosomal abnormality (Trisomy 13). It’s rather nasty issue when you read about it. The doctors had never expected him to survive beyond a few days after birth. The thing that struck me most was her gratitude for Logan’s life and her devotion to her son.

We kept in touch through Facebook over the years. Still living, Logan continues to be Tina’s pride and joy. He’s also her biggest challenge.

Like most women in the band of parents of special angels, lunch isn’t just lunch for us. It’s a rare time to connect with people who, although they don’t walk in our shoes specifically, at a high-level understand all the issues we face, the complexities we are always trying to wrap our minds around, the fears we have about what happens when we’re gone, and the generally different perspectives we have on life about success and the important things and living.

I wish Tina’s life had the low-level of constant chaos mine has. I’m just worrying about affording special diets and preparing kids for life without me and finding ways to “encourage” mine to accept responsibility. Unfortunately, she’s living a life characterized by a whirlpool in a whirlwind about to be hit by a tsunami while a tropical volcano rumbles to explode.

  • While I have the responsibility of trying to teach my children to communicate in a socially appropriate manner, Tina has to try to interpret the non-verbal gestures of a child who makes few vocalizations.
  • While I try to help my kids figure out what jobs to do and what life might be like on their own, Tina has to worry about what kind of setting to place Logan in when she’s gone–group home versus nursing home versus something else no one is yet willing to discuss because Logan’s not yet 18.
  • While I’m trying to get my kids to eat some of the new recipes, Tina is trying to follow midnight feedings that could cause sudden health emergencies, keep Logan from eating things he shouldn’t, and keep Logan from pulling out a GI tube.
  • While I am getting stronger on my diet and doing some more physical activity, Tina is trying to just get her body chemistry to cooperate a little longer to provide another decade of care for Logan.

In the midst of this maelstrom, her insurance company for Logan decides he doesn’t really need overnight nursing supervision anymore. Tina is fully competent for running his overnight feeds. Like any good special angel’s mom, she appealed citing the frequency Logan has issues with his feed, requiring emergency care at a hospital over two hours away; she cited her own health issues requiring overnight medications that ensure she couldn’t operate a remote control, let alone a motor vehicle; she even got tons of therapists, doctors, and others working with her and Logan to write letters appealing the decision. The appeal was denied yet again.

As Tina’s sighing and describing lawyering up and all that entails, I have the following going on in my head (yeah, listening skills aren’t my strong suit):

  • Lyrics to Jimmy Buffet’s “Volcano” are playing in my head
  • I hear the words (including tone and cadence) of certain leaders in our nation promising us Obama’s health care plan wouldn’t change a thing, we could keep our insurance, and we’d all be happy
  • I have the pictures of the Holocaust concentration camps of the mentally ill and intellectually disabled going through my head like the old slideshows

In a way, I feel bad for Tina. I know that only prayer (God of Abraham, Isaac, and Jacob please) will change anything for her. Yet, I know she joins countless other parents fighting and scrapping and clawing with insurance companies, and the numbers seem to be increasing since the beginning of the year.

I wish I could wave a magick wand and make it all right for Tina and Logan and all the other parents suffering through similar things. The reality is there are no easy answers. We in the band of parents of special angels have to work, not only for our kids, but also to change a society woefully off course.

We have to fight the attitude that a person’s worth is measured by his or her portfolio instead of the joy he or she brings or the lessons he or she teaches us.

We have to stand guard in a society that wants to quickly dispose of a difficult situation without discussion and through courage and humor and intelligent, emotionless discourse demonstrate that the best lessons in life are the ones you have to work to understand, the ones that threaten to unravel the very fiber of who you are as a person, the ones that rock your world and leave you looking for stability.

We have to recognize that we are not islands…not a one of us can stand alone. We have to learn to band together and work together and speak for each other.  In the words of the esteemed Benjamin Franklin, “We must, indeed, all hang together, or most assuredly we shall all hang separately.

Please help me understand the (il)logic…

I’ve been trying tuna for about the last six or eight months. I had a favorite brand (won’t mention any names, but it’s brand is similar to an insect of the Genus Bombus), until right around the time my daughter was diagnosed with soy allergies.

Now, when I bought the brand, the labeling on the front of the can stated it was packed in water. Foolish me, I was too tired from reading 2-point font everywhere to actually look on the back in the ingredients list.

When I turn it over, it also has vegetable broth in it. Now, it does say water in the list, but it also has vegetable broth and the allergen lists soy.

So, we have cans to go to a local food pantry.

Now, I need someone to explain to me how vegetable broth and water can be simply labeled as water on the front of the can. Yes, I goofed; a trip to the supermarket can be exhausting when you can’t purchase anything with soy, corn, tomatoes, or artificial chemicals. But somehow, it is more logical to simply label it as tuna instead of misleading uneducated or tired consumers into purchasing something looking like it’s packed in water instead of something that’s packed in more than water.

Now, I did try to contact the maker of said products about the issue. They did admit they do use soy sometimes. And they helpfully tried to suggest another product. Obviously, they don’t live on a budget… the other product was far more expensive.

So now, I need to understand why it’s more expensive to pack tuna in water, only water, pure water, cool water, clear water. Somehow, from all my time in the kitchen, I’ve found it far more costly in time, effort, and energy, to heat water, clean vegetables, and boil vegetables.

So, while I wait for the explanation, I’ve switched to another brand… something about Mother Earth and a vow.

Hope this warning helps all of you be more on your toes! Also hope grocery shopping isn’t the olympic mathathon for you that it is for me.  🙂

 

Foot in Mouth Disease… No Remission So Far…

I just had one of those parenting experiences that makes me want to hide. I don’t know how to describe it, but I’m going to do the “analysis paralysis” thing so that people like me who don’t normally share might get to have their voices heard.

As I’ve said in my intro, all my kids are special needs. To make life more challenging, all the needs are hidden. What this means is there is nothing physical to indicate to the ordinary passerby who doesn’t know them that their brains are wired differently. So, when any of the girls opens her mouth to speak, it becomes a double whammy–people who don’t know her are shocked because it’s not “normal” AND they didn’t expect “not normal.”

I struggled with this early on in their lives. My still, small Voice and I had many interior conversations. Eventually, He won. He and I worked on areas like my pride and expectations  (His, mine, and society’s) and His calling for them and who I was to Him and how I was to express that.

Because of their brain issues and my character issues, one of His challenges to me has been consistent and authentic speech and action from the sanctuary to the boardroom to the school IEP room to the bedroom. In the moment, I am asking Him for His insight as to the source of the issue and dealing with the issue in the moment based on His instruction.

It’s resulted in some beautiful moments, especially when my connection with Him is close and I’m focused on Him and His plan.

Today was NOT one of those moments.

As part of her diagnoses list, my youngest child is on the autism spectrum. Her old diagnosis was Aspergers. With the release of the new diagnostic guidelines, I am not sure what her new diagnosis would be. This can be quite interesting at times. This means she is very functional in some areas, like reading and remembering information and following rules, and very non-function in others, like appropriate social interaction. This has been very embarrassing at times because she sounds intelligent and arrogant and mean and childish all at once; the thing is, she’s really kind and merciful, almost a gentle giant, but you have to know that or you get a shock to your system when she speaks.

The last two to four weeks have seen her have a tremendous physical growth spurt. It is to the point where all that fits her is her skirts. She prefers long skirts because, quite frankly, in her words, “My body doesn’t like it when I shave or use the funky, loud machine.” (Translate epilator for the rest of us.) To make her life easy, when we purchase clothes, I often get plain tops and patterned bottoms. This overcomes her sometimes unusual sense of what she can pair together as an outfit.

She does look very Mennonite in it. For those not familiar with the Mennonite faith, the easiest way for an outsider to describe it to another outsider is that Mennonite is Amish light. I don’t personally believe, but I also refuse to criticize. I don’t agree with the rigid expectations for women, but I respect tremendously the courage to stand out and look different and be different in a culture that almost demands conformity.

We are walking to the local Goodwill because jeans are something that clearly can be gently used and no one should care. She is walking beside me easily with her long legs, but not yet fluidly because she cannot adjust quickly to how rapidly her body is changing. I’m smiling inside because she does look a little Mennonite with the sneakers and long skirt and modest top; the only thing missing is the head covering.

We enter the store, and she is magically drawn to the skirts. I re-direct her, telling her, “Not today dear. Besides, those are a little too long for a child your age. You’ll look too…”

She responds, “Mennonite?”

I turn and see two very beautiful young Mennonite ladies, probably about five years older than my daughter.

I feel the need to turn and hide, run away, disappear. I’ve tried to never condemn a member of another Christian faith, so I’m not sure where she got that. I do use the Mennonite as an example of how to be modest when culture doesn’t support it, but as far as I know, I’ve not ever said anything negative. Always quick to recover as I learned embarrassment only kills my pride, I added, “Not that there’s anything wrong with that. It’s just not you.”

I feel the pressure leaving, but I can also feel them looking at each other. I start to rapidly redirect, but my child is mesmerized by the baby. I’m feeling a little scared because my daughter used to be only interested in fairies and she is now zeroing in on the baby intently with that hyper-focused stare that most who don’t deal with kids on the spectrum call “creepy stalker.”

“Is that your baby sister?” Again, I feel an impending need to disappear.

I just say, “Oh, honey, it’s probably her baby daughter.”

We finished our trip, and the Goodwill staff was not as bright and cheery as they usually are. The body language was stiff, cold, and callous. With my wounded pride, I’m mentally calculating all the things I should say.

The inner Voice just stopped me. I was taken back to how I was before having special needs kids. I used to look at meltdowns and call them tantrums. I used to mistake exhaustion for laziness in dealing with poor behaviors. I too used to play judge, jury, and executioner for stupid conversations being held in public. I would also turn to my friends, whispering like the roar of a jet engine, analyzing and criticizing and figuratively pounding my breast with self-righteousness.

So what is the point of this little exercise in self-humiliation?

It’s all about context and perception. Perception changes depending on how close you are to a situation, how much you know about the situation, how well you know the people in the situation, and whether anything in your experience banks is similar enough to help you look at the situation from more than one perspective.

It’s also about courtesy and respect. If I want people to stop staring and stop asking bizarre questions, I need to stop gawking and asking bizarre things. If I want tolerance, I need to show tolerance. If I don’t like the private conversations that are just a little too loud not to be overheard, I either need to live out loud or wait until I am in private to express the inappropriate AND I need to teach my kids how to do the same.

But I also need to be aware that tolerance and courtesy and respect are defined by the situation. What may be acceptable in one culture or group may not be acceptable in another. What I define as open, honest, forthright parenting may be viewed by another as giving too much information and too much social responsibility.

So in closing, I do apologize to that Mennonite family. I truly do respect how you live, even though I don’t like the roles that you permit for your women. I ask the workers to forgive me for not painting the background of why my child is the way she is but I figured you were close to closing time and would rather have dinner than a neuropsychology lesson.

As much as I didn’t like having all the eyes on me when I was a child growing up, it was a good thing. I learned that motive is not perceived by the human eye but by the Heart of the still, small Voice. If I want others to feel comfortable asking about and getting to know the still, small Voice, I need to consider how my words and my actions make others feel. While I cannot water down truth, I can try to sweeten my expression of it so that when mistakes are made the sincerity and love will communicate far more than the error.