My official refusal of standardize testing or…

Standardize testing can SUCK IT!

A lot has happened since my last post way back in December, but today I’m just going to focus on a small victory for our family. The TCAP was this week. For those who don’t know, TCAP stands for “must take this test instead of being taught actually school work for an entire week and no, you won’t be learning for the rest of the school year despite there being a month left before the end of the year”… No, I don’t actually know what the letters stand for and that’s part of the problem. They administer these tests without knowing what is on them, without any proof that our students are better for them and without releasing a grade for them until it’s already too late to do anything about it. Those who took the TCAP this week will not receive their grades until sometime this summer, and won’t be told what they missed, just what the final score was.

I’m not a fan.

I can vividly remember the anxiety these test days produced in me as a child and I was only expected to take them during my 4th, 8th and 10th grades of schooling. Today’s children, in most states here in the U.S., are expected to take these tests every year from 3rd-8th grade, followed by End of Year Exams from 9th-12th grades. Some schools and districts have even begun to administer these tests as early as kindergarten in an attempt to get ahead of the curve and get as much test preparation in as possible before the kid is even old enough to read.

I’m not a fan.

This year would have been the first year Sissy was expected to sit for the TCAP here in Tennessee, but my husband and I decided at the beginning of the school year that she would not be sitting for this exam under any circumstances. I tried to not sign her up for a testing site. Didn’t work. I tried just not taking her to the testing site the first two days. I was met with multiple emails and phone calls. Then I wrote a letter…

I’m much more articulate in writing. After some editing from my husband (I tend to follow rabbit trails when I’m agitated), I replied back to the school psychologist, a woman who has NEVER met or spoken with or about my daughter, with the following email.

***NOTE: I did change names to maintain privacy. I’m not nearly this snarky normally… Well, yes I am, but that’s beside the point. When she sends me canned emails addressed to “Dear Learning Coach”, I really did want to reply with “Dear School Psychologist”, but my husband was against it. ***

“Dear School Psychologist,

I understand you are the contact person regarding testing arrangements for the TCAP this week. I understand your concern about my child, Sissy, being absent during the scheduled testing time. I assure you, she is just fine. I write this letter to inform you that she will continue to be absent for the duration of the week and will not be participating in any make-up tests scheduled on her behalf. My husband and I are fully aware of the state mandate on local school systems to administer the test, but in absence of a mandate upon my child to actually take said test, we are hereby exercising our right to refuse the TCAP on behalf of our daughter.

Based on the pillars of the 14th Amendment, and the Supreme Court rulings of Meyer v Nebraska (1923), and Pierce v Society of Sisters (1925), I exercise my Constitutional right as a citizen of the United States of America to take complete possession of my children, and to guide their education in a manner in which I see fit. As a taxpayer, I am entitled to the provision of public education for my children as outlined in the State of Tennessee Constitution. By proxy, my children also hold certain rights; among those, that they may not be denied the right to enter the school on testing days simply based on testing refusal, that they may not be discriminated against by denying them meaningful instruction or by placing them in isolation for hours on those testing days, and they may not be punished in any way for not participating in the standardized tests.

We do not believe standardized tests are an adequate measure of the true skills of students or teachers. They also do not measure skills that are needed to be “successful” in our current society (e.g., strong oral communication skills; ability to collaborate/cooperate with others; higher-level, hands-on problem solving skills; self-motivation; tenacity; long-term planning/goal-setting; independence; etc.). Further, as a child with both autism and ADHD, we do not feel the TCAP will be of any benefit to Sissy’s mental and emotion stability. It is a complete disruption to her therapy schedule, as well as the therapy schedule of her younger brother, who receives a district issued Individualized Education Plan (IEP) through the _____ School District. We believe our children’s private and public issued therapy comes before any government sanctioned event, which was a determining factor in us choosing Tennessee Virtual Academy for this school year. The therapy they receive is invaluable to their future success as individuals much more so than any bubble test could possibly measure.

In addition, Sissy lacks both the fine motor muscle endurance and the keyboarding skills to adequately complete either a written exam or a computer simulated test. This will not only prevent her from completing the test in a timely manner, but would reflect poorly on her final grade and on the assessment her school and teachers receive as a result. She would be made to feel “ignorant” because her disability limits the amount of time her hands can function in that capacity. Sissy gets stressed and agitated when she knows she is being timed. This has been witnessed on numerous occasions by her speech and occupational therapists. Sissy also suffers from physiological stress reactions. When she becomes agitated, stressed, or even excited, she throws up. This is a scenario neither of us wants to contend with, I’m sure. The testing site is also our home church here in “our town”. I will not have the state turn her beloved place of worship, fellowship, and fun into a place of anxiety and stress.

We also do not feel her grade on a standardized test is a fair assessment of the teachers she has worked with this school year. Her teachers pay, license, or merit should not depend on MY ability to convey the concepts of each subject to Sissy in a manner such that she would learn and thrive. As an online public school, I am the main source of Sissy’s learning, not a tax payer funded school or teacher. The manner in which the materials are relayed and the amount of information Sissy has retained this year is a direct reflection on my ability to know how to convey such information to Sissy, not on a teacher she speaks with for a few minutes several times a week. It is unjust for our state legislature to tie teacher pay, license and merit to my abilities to understand and communicate with my own child.

In your email to me this week regarding Sissy’s absence from the TCAP administration test site, you made the statement:
“This is a state-mandated assessment, and it is part of your student’s final grade. Students who do not attend the TCAP may be withdrawn from Tennessee Virtual Academy.”

Again, I understand that the TCAP is under mandatory administration, meaning you have to provide the test; we do not have to take it. I understand that should you feel the need to do so, state law allows you to punish Sissy by 15-25% of her final grade as a result of MY choice in her educational path, regardless of the sentiments of the Supreme Court on the matter of parental involvement. I also understand that you could easily change the status of our family to “failure to comply”, which could result in our immediate withdrawal from Tennessee Virtual Academy. If this is the path you choose, I want you to understand this will not force our hand and we will not submit to veiled threats against our child’s education. The state law in Tennessee does not require independent homeschool students to submit to standardize testing during the third grade year. State law only requires homeschool students, who are not schooled under a church-related school program, to participate in district-wide standardize testing during grades 5, 7 and 9. Regardless of where Sissy is registered as a student, either with TNVA or as an independent homeschool student, she will NOT be taking the TCAP this year.

I only wish to be an active participant in my daughter’s education and in doing so, I exercise my right to have a say in regards to the measurement of her academic achievement and “success”.

Thank you for your time. Should you feel the need to discuss this any further, I can be reached primarily by e-mail at “here” or possibly by cell phone, schedule permitting, at “here”.

Mrs. Rainshadow Noba”

I never got a response.

September 11, 2013

I know it’s late, but that’s how I roll…

September 11, 2001:

I sat in my therapists office as he railed on about worry and fear, telling me: “don’t worry about yesterday, its in the past and you can’t change it. Don’t worry about tomorrow, it isn’t here. Focus on today only.”

I’ve often joked about how my life could have been so different if I had actually taken his advice and focused on “today only”. My young, impressionable mind could have become royally obsessed with the Towers, the airplanes, the people.

Instead, I still fear the past, I still worry about the future and I can’t relax today. Instead, it took me years to process what I’d see and heard that day. The conflicting actions of the people in my life who were supposed to help me through it. Viewing that much hate and that much love and still so much indifference all in a span of a few hours left me with a lot of confusion.

Even further down the years, I’m married to a soldier. He’s fought in the wars that started that day, as has his older brother and so many other men and women. Not all of them come home. When you look at the death counts (a phrase that shouldn’t even exist), do you just count those in the Towers, the ones in the airplanes and the ones in the Pentagon? Or do you remember that so many more have died as a result of that day? Each soldier, contractor, or civilian who has died in the wars of Iraq and Afghanistan has died because of what happened September 11, 2001.

Let’s remember this, when we look at other war-torn nations and think we can help. Decades ago, we thought we could help. Today, we mark the anniversary of the day that help bit us in the ass.

Let’s remember those who lost their lives because our government focused too much on today and not enough about our future. Let’s remember those people who lost their lives because a small group of anti-Americans decided a plane would make a great weapon of mass destruction. Let’s remember the soldiers who have lost their lives taking the fight to another country, so our children can grow up without seeing bodies in the streets or living in fear of being murdered in their sleep as a message to the town.

Let’s remember.


My high school reunion was this past weekend.

I didn’t go.

I spent Saturday morning at a farmer’s market with my family. Spent the afternoon grilling fresh cut steaks and baking fresh veggie with my husband. Saturday night was full of Doctor Who episodes and snuggling with my husband.

I had planned to submit a photo or two for the slideshow since I wouldn’t be in attendance, but, unsurprisingly, I never heard back from the slideshow coordinator. I’m used to that and given the attitudes of those on the Reunion Facebook page, I haven’t missed much and most haven’t matured much in the past ten years.

In honor of my ten year high school reunion, I’m going to share the post I originally wrote on the topic, last summer. The irony of having my reunion “pass me by” is that I was in Florida for a week just this month, just nowhere near my “hometown”…


You knew me when?

30 Days with Autism, Day 13


April 13th: Autism has taught me that just because emotions are harder to articulate doesn’t mean they aren’t felt.

When you can say anything, nothing you say feels important. When you can’t say anything, everything you say is important. Before K could ask for a glass of milk, she could recite Dr. Seuss’ “Green Eggs and Ham” from memory. She could turn a page, look you straight in the face and tell you, word for word, the part of the story that played out on that page. Echolalia (seriously, don’t ask how to pronounce this, everyone seems to do it differently and I’m beginning to wonder if any of us are right.), anyway, echolalia is a form of communication. According to, it’s a noun meaning:

1. In Psychiatry . the uncontrollable and immediate repetition of words spoken by another person.

2. the imitation by a baby of the vocal sounds produced by others, occurring as a natural phase of childhood development.

Now, I have to tell you, in my experience echolalia is not something that has to be immediate in response. It can be immediate, such as when you ask a toddler if they want some milk, and they reply “Want some milk”. Or when you ask a child if they want “milk or juice”, they answer “juice”, but when you ask “Do you want juice or milk?” they change their answer to “milk”. That’s an immediate echolalic response based on the last option in the series. This is not always the case for children who, like K, use echolalia as a primary form of communication. It took a lot of frustration on my part to understand that she was only using what she had available to her. There were times in my most frustrated moments where I would say things like “I don’t want to talk to ‘Olivia’, I want to talk to K.” or “Do I have to talk to Kai-Lan, today? Can’t I talk to you.” I didn’t realize then that she was using the only thing she had, scripted phrases.

Is that filed under “WTF” or “LOL”?

The easiest way to describe it is this:
Picture a Rolodex.
In it, most people keep contact information for family, friends, business partners, co-workers, the dry cleaners, random people, or places they may need the phone number of. For people like K, they put phrases in their Rolodex. They may be phrases from books that have been read to them or TV shows they have watched, even lyrics from a favorite song. While we group our phone numbers by relationship to us, or alphabetically, K has put her phrases in order of social situation. These are phrases you use with family, these with friends, and these when conveying emotions. When a question is asked or some response is expected, K can flip through her Rolodex, find a phrase that best matches the context of the situation and apply it. After a while she is able to substitute certain words for others and make her meaning more clear. For example, in the Nick Jr. show, “Ni Hao, Kai-Lan”, Kai-Lan is a young Chinese girl who lives with her grandfather, whom she calls “Yeye”. When something happens in the show to make Kai-Lan excited or happy, she says “(insert item, place, or person here) makes my heart feel super happy!” K attended mid-week Bible studies. In the AWANA program, at that time, she was a “Cubbie”. After study one week, we were leaving the church and I asked if she had fun at Cubbies. She replied with a long thought and they blurted out, “Being at Cubbies makes my heart feel super happy!” That meant, “Yes mother, I had a wonderful time this evening at Cubbies with all of my friends.”

When K gets too excited for an event, she gets sick. To illustrate this concept, let me tell you a little story. Close your eyes (but not for too long or you won’t be able to keep reading), now imagine you’re sitting at a table in a restaurant, say Olive Garden. You, your spouse, your children. You’re all sitting there enjoying your meals. Your oldest child is having a birthday today and after dinner you have a special surprise. You are going to take them to Toys R Us after dinner to pick out their own birthday present and then to a Chick-Fil-A for ice cream. It’s been planned for weeks. You’ve told your child there will be a surprise after dinner. So, you’re sitting at the table finishing your meal. The server brings you the check when the birthday kid claims to not be feeling well, very suddenly, and after no previous sign of any illness. After a few minutes, your child again tells you that they are feeling “sickish inside”. At which point you clarify, “sickish in your bottom or sickish in your mouth?” (I should clarify that when K gets constipated, she often feels the same as when she feels ill. “Sickish in her bottom” means she needs to go poop. “Sickish in her mouth” means she’s going to throw up.) Your child tells you “in the mouth”, at which point you get up from the table headed for the bathroom with your child. No sooner do you get out of your chair does your child stand and promptly throw up all over the table! Did I mention they serve chocolate milk at the Olive Garden? Your server, who was nearby at the time, rushes to the table, dumps the bread basket out and holds it under your child’s face while you rush to hold hair and clothes out of the way. Walking to the bathroom, your child seems fine again. In the bathroom, your child is cracking jokes and making silly faces in the mirror as you wipe vomit from their face, sleeves, shirt and pants. To see your child now, you would never guess they had just puked up three glasses of chocolate milk all over the table in a semi-crowded restaurant. Talking to your child, you discover the reason for the whole trip to the bathroom: butterflies. (When K gets excited, we call them butterflies, so she can identify the feeling in her stomach.) There were so many butterflies in your child’s stomach; they had no choice but to get sick. Your child is disappointed and upset that they will have to go home and change and won’t be able to have their surprise tonight.

If only real emotions were as simple as emoticons.

That’s the way it is sometimes. Just because your brain won’t let your mouth articulate what your heart is feeling, doesn’t mean you’re not feeling it. It doesn’t mean you feel it any less. It doesn’t necessarily mean that you feel it differently. It means you can’t always communicate it. When you are worried, scared or frightened, you might throw fits to have your mom come closer. You might get out of bed for several trips to the bathroom, you might request the cat sleep in your room or that you have three flashlights because one might burn out. When you are sad, you might not be able to handle people being near your stuff. You might get into more fights with your siblings because they usually make you happy. Just because you can’t look at someone and tell them, “you hurt my feelings”, doesn’t mean your feelings weren’t hurt. Everybody has feelings. Sadness, happiness, joy, hate, rage, anger, contentment, disappointment, fear, love, worry. Everybody feels them, not everybody can tell you about them.

30 Days with Autism, Day 12


April 12th: Autism has taught me caution when hyping an exciting event that may not happen.

Some people aren’t dependable. We’re adults (well most us), we understand that sometimes people are gonna flake out on something important to us. People are not gonna show up, they will come up with lame excuses they see as valid or won’t call at all. Some people can’t put themselves second to someone else. When push comes to shove, they just aren’t there to back you up. We all have these types of people in our lives. People who really infuriate us. People who don’t always deserve our forgiveness for missing certain events. Knowing that people can’t be depended on is easy for us. You invite them, they never come, never have a good reason, and so you stop inviting them altogether.

For parents of kids with autism, we sometimes find ourselves in unique situations. When people aren’t dependable, it can throw our kids into A tailspin of fits, tantrums, hypersensitivity and chaos. Our poor children do not understand why you said (so and so) was coming to visit and then didn’t. Our children do not understand that sometimes things come up preventing an event from occurring. They don’t understand that people can love without showing support. It’s harder for our kids when people let them down. It’s harder on us, the picker uppers of flailing children, to comfort them when an event doesn’t take placed as planned for days, weeks or even months before. It’s hard to be vague about things, so I’ll give you an example from several years ago:

I was pregnant with my son at the time, before we knew our daughter had autism. I was months before I was due, but I was so excited to have my mom coming to visit after the baby was born. At that point, I hadn’t seen her in more than three years, though we’d tried to get her to come visit us, it never worked out. I was telling K all about her “Mima” (pronounced ME-mah), and getting her excited to see Mima for the first time in so long. For weeks, I told K that her Mima was coming. Two weeks before I was due, the doctors began to get concerned that LJ was too big (K was over nine pounds), so they wanted to run some additional testing to see if he was healthy enough for an induction. I told my mom that on Monday I would have the test and they would tell me if when the baby would be born. LJ had other plans, as babies often due. My water broke early Friday morning before we had time to set my mom’s plans to come. I delivered him later that morning. I never got a call from my mom, no text messages, nothing. All weekend I sat in the hospital crying because my mom couldn’t even bother to congratulate me on the birth of my second child. She called me late Monday night and told me she wasn’t coming to visit. She couldn’t handle seeing her grandchildren and then leaving them. (Those really were her words.) She told me that while most grandparents run up and down the street cheering to all who will listen, she laid in bed mourning. (Again, her words.) So, in the end, she didn’t come. In fact, the first time she met my son was the summer of 2011 just before his second birthday. The point is, while I was heartbroken that my mother refused to come see me after so long, couldn’t make the effort to see her grandchildren and came up with some really lame excuses, I had to deal with the birth of a new baby and the three-year old big sister who didn’t understand why any of this was happening. Thankfully, there were few issues getting used to the new baby, but it taught me a valuable lesson: Unless, she’s in the driveway, don’t tell the kids Mima is coming to see them. There have been other times when we told K that someone was coming to see her and for one reason or another it didn’t happen. We have learned that if this is the case, to simply stop talking about it. If we don’t bring it up, she doesn’t know it’s not happening. She forgets it was even an option and moves on to other things.

Please understand, I love my mother very much. She did her very best as a mother with the very least of resources. I’m grateful for the things she has done in my life. She makes me a better person and a better mother every day. Loving someone doesn’t make them dependable, however, and sometimes even the people we love can’t be counted on all the time. This was just one of the examples of people who have let us down for visits or special occasions. It’s tough, but when it comes down to it, not talking about a trip we may take or a visitor we may have is much simpler than having to let K down if plans don’t work out. The fights, the fits and the tantrums just aren’t worth it to have her heart-broken.


(AUTHORS NOTE: As of this post, April 13, 2013, the only time my mother has seen my son was the one time in 2011 just before his second birthday. He’ll be four this summer and she has seen him once, despite living four hours away from us.)

30 Days with Autism, Day 11


April 11th: Autism has taught me that sometimes freedom of speech is a hard fought battle.

“I would like a glass of milk, please?”
“Can I play video games on the Xbox?”
“Mommy, I need help putting my shoes on.”

These are phrases kids use every day. All over the world, would be my guess. For kids like mine, speech is a hard fought battle every day. Each new thing said, or connection made, makes me so proud. Speech, or lack of it, was the first thing we noticed as K was getting older. It was the first thing we brought up to the doctors. When she was a year old and not pointing, or gesturing, to things she wanted, we knew something wasn’t right. When she was 18 months and still not raising her arms to be picked up, we knew something wasn’t right. I vividly remember one occasion when she was 2. She was sitting in the high chair screaming as my husband and I grabbed one thing after another off the pantry shelf in an attempt to figure out what she wanted. For nearly 30 minutes, this went on before we figured out what it was. “Use your words” became a phrase of necessity at our house, a phrase we still use to this day. To try and have a conversation with her was useless. You could ask questions, but you weren’t gonna get a discernible response. She was nearly 4 when her speech finally started to pick up and become semi-normal for age.

Before then, we often heard things like “we don’t understand what she’s saying” and “why doesn’t she talk good” from the kids in her Bible study. We were naive. The doctors told us “she’s just a late talker”, “all kids are different”, “her hearing is fine”. Believe me, I was grateful to hear it wasn’t an issue with her hearing, but why couldn’t she talk? My child who could name any flash card she was shown, but couldn’t form a sentence long enough to ask for a cup of juice. My child who could recite Dr. Seuss books from memory, but couldn’t ask for help in the bathroom. My child… Why couldn’t she talk?

I say “talk” because she understood everything just fine. She was incredibly intelligent, oh she was so bright, she still is. The child is a literal sponge, always so excited to learn something new. It was as if her brain was absorbing everything it could, but couldn’t make her mouth work properly. She understood when we asked her to do things; she could follow simple one step directions. She did her best to communicate with us, but just couldn’t. Even when she had a word down, sometimes they would change. For a long time, she could say the word “cup” just fine. Several months later, “cup” became “puck” and it remained “puck” for nearly two years. For a while, we worried she had apraxia. She knew what we were saying, she just couldn’t reciprocate. It’s the most frustrating thing in the world, having to rely solely on echolalia to understand your child when they finally do start talking.

In the past two years, her ability to communicate verbally has come a long way. After a year in speech therapy, she’s finally within normal range for her age. She no longer requires an IEP at all, but her teachers are continuing to work with her to help her improve her free association. She still relies heavily on her Rolodex on social cues, but you don’t really notice unless you spend a lot of time reading or watching TV with her. Most people don’t realize how precious speech is. Many people on any given day, say the most hateful things to friends, family, and perfect strangers. It’s a shame because there is a whole culture within our society of young children, adolescents and adults who would love the chance just to say “I love you”.

30 Days with Autism: Day 10


April 10th: Autism has taught me the importance of accepting yourself as you are.

There are times when I look at my daughter and how she’s dressed herself for the day and I wish I could be in her head during that particular thought process. I would just love to know exactly what she was thinking when she put that outfit on, and yet, I send her off to school just as she is most days, so long as she’s not in violation of the dress code. Her obsession with leggings and tutu-like skirts may make some people look at her funny, particularly when her color pallet is a bit off, but she’s being who she wants to be, not who I want her to be.

In letting Sissy be herself and define her own style, I have learned that it’s okay to wear what I want so long as I am true to myself and be comfortable. There are days when Sissy isn’t quite comfortable in the outfit she has chosen. Days when, at the age of seven, she worries about what others will think of her outfit. Those are special days in our house because mommy grabs a few things that are crazy and we have a “Crazy Outfit Day”. This means I might wear a bow tie or a dress with a t-shirt and brightly colored leggings. My outfits are always “Sissy Approved” and we make each other confident in what we are wearing.

I’ve always been honest with my daughter regarding her Autism diagnosis. I don’t feel like hiding it is the right way to go. I didn’t know why I was different growing up and it caused me great pains. Years spent hating myself could have been spent getting help and learning how to better adapt to the world. I don’t want these years to be wasted for my daughter. I want her to understand herself, to understand her strengths and challenges and for her to learn how to maneuver through life without the great struggles and heartaches that I have had to go through.

I don’t want her naivety to hurt her the way mine did me. I don’t want her to hate herself because people don’t understand her and she doesn’t understand herself. I want to be the best mom I can be for her. If that means she wears lime green leggings with a blue and purple plaid skirt and pink shirt, then I will let her wear it. She needs to be comfortable with who she is and I want her to define who she is, not someone else.

I want my daughter to have the confidence and self-esteem that I didn’t have growing up. I want to teach her that she is always beautiful so long as she is happy with herself. It doesn’t matter what anyone else thinks of her outfit, her frightful hair, her stimming or anything else. She is a unique individual worth celebrating and so am I. In teaching my daughter to love herself as she is, I am learning to love myself as I am. I never thought being a parent could teach you so much about yourself.

Crazy together and about each other.

Crazy together and about each other.

A crazy outfit to match Sissy's

A crazy outfit to match Sissy’s

Great big frilly skirt courtesy of a friend :)

Great big frilly skirt courtesy of a friend 🙂

Sissy in her "I look just like Junie B." outfit!

Sissy in her “I look just like Junie B.” outfit!

Sissy and Little Brother, best friends for life!

Sissy and Little Brother, best friends for life!

30 Days with Autism, Day 9



April 9th: Autism has taught me the importance of distraction techniques in crisis aversion.

Who knew that song could mean so much to a 4 year old? Or this one (which at the age of 5, she could sing perfectly in time to the karaoke instrumental):

And what mom wouldn’t want their child to have this as a life motto (which was written in response to a critic, Taylor Swift gave an interview saying “there’s constructive criticism, there’s professional criticism, and then there’s just being mean. And there’s a line that you cross when you just start to attack everything about a person.”):

Believe it or not, I’ve used this several times with much success:

“What’s that?” doesn’t work so well with autistic kids. They don’t understand the looking where someone is pointing thing. But sometimes, “Hey, that’s pretty”, works even better!

Music has become a great distraction. I’ve learned that K responds quite well to music and it helps to soothe her, particularly if it’s a song she knows the lyrics too (like mother, like daughter). It quiets her mind and gives her senses something else to focus on. It’s easier for her to regain control of herself and allows the negative stimuli to be forgotten.
Another great distraction we’ve discovered is PT. Physical Training, as it’s known in the Army, has become a great distraction for our kids. When K gets too much going on inside of her, she tends to become very active. She flails more often, becomes louder and more disruptive to the people around us. This nearly always happens when we are talking with a store employee or are trying to check out. My personal belief is that standing still for so long causes other stimuli to get through. Things she wouldn’t hear, see, smell, touch if we were moving around the store become stationary and she goes into overload. She enjoys being active and loves to be a “superhero” like daddy, so PT becomes fun. People laugh and smile as she does jumping jacks, push-ups, sit-ups, toe touches, you name it, in the middle of the store. Letting her be active in a controlled way often times helps to combat the coming hyperactivity and allows us to get out of the store with minimal negative interference from other people.

If my child is going to have a tantrum, I’m going to go into crisis management mode. I’m convinced life experience should count for degree credit in this area. Who needs hostage negotiators when you’ve got moms of children with autism? Our battle armor is half-done, smearing mascara and our sword is a great distraction. We will slay the fiercest “dragon”, in the middle of a crowded mall, surrounded by useless people who think “dragon” slaying is a spectators sport. (Hey there’s a thought, charge people to give rude comments and stare. At least then we could afford Occupational Therapy AND groceries, right?) It’s not easy when you know it’s coming. The signs are there, that little finger flick getting more prominent, scratching the head a little more often, hands are covering the ears for longer periods of time, whatever the signs for your child, you can see the signs long before the meltdown actually takes place and with proper distractions, you may be able to successfully navigate the next 30 minutes without a major fiasco.

What distractions do you use to avoid fits and keep things running smoothly?

30 days with Autism, Day 8



April 8th: Autism has taught me to say what I mean and mean what I say.

For the record, I’m 27 years old. My driver’s license says so. My birthday certificate says so. And everyone present at my birth would attest to the claim. I am in fact, 27 years old. If you ask K how old I am she will tell you, “24”. Only my next birthday, she’ll tell I am turning 26. Though she has the concept of birthdays down with an efficient accuracy, I made a joke several months ago about only being 24 year old. Thus, I became 24 in the eyes of my daughter. When you have a child with autism, you have to be cautious with what you say and how you mean it. Just this evening, K asked for some french fries  at dinner, to which I replied, “No, because you haven’t even touched your sandwich.” This simple statement brought on the physical response on her reaching her hand out and touching the top bun on her sandwich. Any other child, and that would seem like a snide, sarcastic, or rude thing to do, but for K, it seemed the logical action to follow the statement I had made about her not having touched her dinner. Of course, she had touched the sandwich. In fact, she had removed the cheese from the bun and set it on the plate next to the two half buns. She had eaten the half banana on her plate, and had picked several sesame seeds off of the lower half of the sesame seed bun her dad had bought for the hamburgers he grilled. She had been touching her food, she just wasn’t eating it. She did, eventually, get french fries, but only after removing the sesame seeds from the lower bun and eating only that. No cheese, no top bun. Half a banana and a mutilated hamburger bun. The point to this story is that what I said wasn’t what I meant, but with kids like K, what I say is exactly what I mean, even if it’s not. Autism has taught me that meaning is not always clear and communication has to include both a clear speaker and a patient listener.

30 Days with Autism, Day 7


April 7th: Autism has taught me to celebrate the small steps and push on through the larger setbacks.

If you had told me that learning to play in the dirt could be so difficult, I never would have believed you. But it’s quite difficult for a child with tactile defensiveness. Tactile Defensiveness is an issue within the brain that keeps a person from being able to handle certain textures. For K, if her hands were perceived to be dirty, she had to wash them immediately; regardless of what we were doing at the time or even if the dirt was actually there or not. Several times before the age of two, she scraped up the backs of her wrists in an effort to keep her hands from becoming dirty when she fell on the driveway. She hated having crumbs on her hands, hated dirt with a passion, and once begged me, in the middle of Target, to wash her arm after discovering her first freckle. She was so convinced her arm was dirty, she became visibly upset and we had to leave the store. We tried

Note the awkward angle of her wrists. This was a common way for her to touch the floor until well after the age of three.

The first time she willingly played in the sand at the beach (or anywhere), she was 3 1/2 years old at the time.

desperately to work with her. For months, we would take her outside and try to get her to “get dirty”. After a long time, we got her to hold the dirt in her hands without having a fit. Shortly after that she developed a habit of “watering” the bushes with dirt. She would pick up a handful of dirt and immediately drop it into the bush next to her. Then she would do it again. This became a fun game for us and got her slowly more comfortable with being messy. A few weeks later it snowed. Eleven inches of snow in twenty-three hours. But that brought new problems. She wouldn’t touch the snow. We had worked for so long to get her to touch the dirt and now she won’t touch snow. It was heartbreaking to watch her playing outside, all bundled up, loving when she got hit with a snowball, but unable to hold one in her pink-gloved hands. Pushing through is all you can do when you hit a setback like that. After the snow melted and it got warm again, she was back to not touching the dirt. We had to start over from square one. After several years of us working with her and the Occupational Therapy she received at school last year, she’s doing much better and just last night she was “digging for treasure” with several other kids at our FRG BBQ. She had a blast. It was great to see her being a “normal” kid.

For kids like K, things can be much more difficult than they would normally be. Simple things like trying new foods can be hour’s long ordeals. Hair brushing has you in fear that the neighbors thinking you’re abusing your children. But sometimes, it’s the little victories that can mean the most. Sometimes, it’s the baby steps that are the bigger picture. For instance, eating peanut butter sandwiches, one would think it would a simple thing for any child to do. One would be wrong. When K first started to eat peanut butter sandwiches, things didn’t always go so well. She had a habit (in the beginning) of removing the bread and eating the peanut butter with her fingers first, then eating the bread one slice at a time. It was a small victory the day she stopped doing this, and was only after I got creative with how I cut the sandwich. Keeping it fun, I asked things like, “Do you want rectangles, triangles or squares?”, “Do you want 2, 4, 6, or 8?”. Did you know it is possible to cut a standard size sandwich into 8 triangles that still looks like triangles? It is. I do it often. It was only by cutting these sandwiches into such tiny pieces that she started eating them as sandwiches. It was nearly impossible to eat it in her preferred method of taking it apart and eating it piece by piece.  It was a small victory, but a great one. She still won’t put jelly on her peanut butter sandwiches, as it’s sticky and can’t be separated from the peanut butter, but just being able to take her out and have her eat a sandwich without destroying it, is a great gift. It’s hard to describe the feeling you get when your child does something for the first time, something other kids have been doing for months or even years. It’s indescribable, but I’m so glad I get to experience that with her.

Not that I don’t love this smile, but I’m glad she doesn’t still eat peanut butter with her finger tips. These days, we give her a spoon =)