12 Things I'd Like My Son's Teachers to Know About Autism

This is the kind of list I would have handed my son's teacher in elementary school. It is pretty general. Stay tuned for a part two that is more Tate specific. 

Autism is a huge spectrum. If you have taught children with autism  before you may have a good general idea of what autism looks like. My son will still be different than the others. If you have questions about how autism affects him, ask me. Nothing will impress me more about you than your willingness to learn about my son's needs.

A routine and transition warnings are helpful for a child with autism. While we know that flexibility is an important life skill and one we need to work on, my son does not handle surprises or big changes in his routine well. Things like a substitute teacher, a fire drill, or a field trip are all going to cause anxiety for my son. A warning and clear instructions will help. A visual schedule would be a helpful tool for my son. Before transitioning to a new activity (especially when going from a preferred activity to a non preferred  activity) a five-minute warning, a two-minute warning, and patience will be needed. 

A child with autism needs extra time to process language. Use simple language and short sentences. Give no more than two-step instructions. Give my son at least three full seconds after you make a statement or ask a question to respond. If you choose to repeat, do not rephrase, as then he will have to start processing over again. Trying to hurry my son will only slow him down further.

Receptive language and expressive language are two different things. My son may understand much more than you think he does. He may not be able to put into words all the things he wants to say. On the other hand he may be able to quote long complicated phrases or passages without understanding any of the meaning of the words. It is difficult to know exactly what my child really knows and what he still needs to learn sometimes.

Children with autism are literal. Figurative language and abstract ideas are a mystery to a child with autism. So, when you say things like, “Pick up the pace” and your other students know you want them to walk faster, my son will be looking for something called “pace” that he should be lifting from the floor. These things happen all day long.

A child with autism can get stuck on one subject. My son obsesses about things that do not matter to you or I. He might want to talk about Disney movie characters or Muppets for a long period of time and there will be little you can do to distract him. He gets stuck in a continuous loop. Occasionally these topics of interest can be incorporated into his learning but mostly they distract him from learning.

A child with autism may need help with social interactions. My son will probably appear disinterested in his peers and he may actually be disinterested but he will never learn social skills unless we keep trying. You have him in a perfect setting for teaching social skills. It is an environment I cannot recreate at home. It would be so helpful if you would use every opportunity available there to teach and reteach social skills.

Sensory issues are a distraction for many children with autism. Sounds that are barely noticeable to you may distract my child and keep him from learning. Textures may cause my son to recoil in disgust. Smells may cause him to gag. Please be considerate of this. Over stimulation can sometimes overwhelm him and cause a meltdown. A meltdown looks similar to a temper tantrum but it is not the same at all.

Children with autism use stereotypic behaviors or repetitive behaviors when they are excited, bored, or stressed. My son will need redirection throughout the day. The behaviors will cause him to appear odd to his peers. Please consider giving the class an age appropriate definition of autism to help his peers understand.

Positive Reinforcement will be helpful but punishments will not. Punishments or threats of punishment will probably result in anxiety and impede progress. He will work toward a reward but will shut down if he fears a punishment.

People with autism tell the truth as they see it. My son may let you know you need to lose weight, you need a shave, or your breath smells bad. Do not take it personally. A sense of humor is a must when working with children with autism.

Kids with autism are not scary or unlovable. They are just different. Sometimes different is intimidating but educating yourself about autism and about my son will help. I’m can help with that! I will willingly answer any questions you have.

BONUS TIP: NOTHING IS MORE IMPORTANT IN MY SON'S EDUCATION THAN COMMUNICATION BETWEEN HOME AND SCHOOL. 

You might also like: 15 Truths of Parenting Special Kids 

The F in FAS Does Not Stand For Fun

Recently I asked my readers what they wanted to hear about. A handful asked me to write about Fetal Alcohol Syndrome, what it is, and how it affects Sydney and our family.

One drink is too many.

When a woman is pregnant, any alcohol consumption has the potential to hurt her developing baby. Depending on the week, and even the day, of development and the amount of alcohol that the mother consumes, the baby may be harmed in numerous ways and to various degrees. There is a potential for brain damage, as well as physical deformities. I’ve been told the area of the brain most affected by alcohol is the frontal lobe. The frontal lobe controls impulsivity, judgment, language, the ability to plan ahead, and problem solving, among other things.

Fetal Alcohol Syndrome (FAS) is the only birth defect that is one hundred percent avoidable and completely controlled by a biological mother’s choices. FAS is not curable and the child does not outgrow the damage done. It is a lifelong disability. A child can be diagnosed by facial features and/or behaviors but many doctors will not give a diagnosis without a written statement from the birth mother saying she did consume alcohol during pregnancy. Some, however, will and because so many children with FAS are adopted and so many birthmothers are unavailable or unwilling to help, the doctors who will give a diagnosis without a birthmother’s statement are so appreciated by adoptive parents like myself.

Sydney has physical features that point to FAS. The doctors at Children’s Mercy Hospital (CMH) said Sydney’s eyes, ears, head size, and a few other abnormalities all pointed to FAS. Her extremely high pain threshold, hyperactivity, and other behaviors were indicators as well. Until we began medication for hyperactivity around age seven, Sydney was difficult to keep safe. The medication has been life changing. Sydney still has FAS but taking medication to help with the hyperactivity and her attention span has helped her to be able to learn. She is reading at grade level now! Math is the most difficult subject for Sydney at school. Math falls under problem solving, which is controlled by that frontal lobe.

Many people have asked me how Sydney’s FAS affects us the most. The hardest part for our family has been the impulse control issue. But that may be like saying the hardest part of being blind is not being able to see. Impulse control affects everything. Without impulse control a person does not think before they speak or act. As a matter of fact, if a thought comes into their head, even one that is obviously a very bad one, they may act on it. If someone says, “Don’t touch that stove” then the person with no impulse control is probably going to reach right out and touch that stove. The “don’t” in that instruction does not register but the “touch” and “stove” sure do. Without impulse control a child cannot sit still or focus on anything. Their mind is constantly wandering from one thing to the next. They cannot learn how to solve problems, and sequencing is a mystery to them. They cannot control their behaviors or learn cause and effect, and punishments will not help. It is beyond their control. They absolutely cannot help any of it.

Attention Deficit Hyperactivity Disorder (ADHD) and anxiety disorders like Obsessive Compulsive Disorder (OCD) are often comorbid with FAS. Some children with FAS also have Reactive Attachment Disorder (RAD). Because so many of these disorders have similar symptoms it is hard to know where one begins and the other ends. So many children with FAS are adopted and there are often adoption issues or past abuse or neglect too. Sydney has been diagnosed with FAS, ADHD, and an anxiety disorder.

We are actually very lucky in a lot of ways though. I have become acquainted with other parents in Facebook groups who have children with FAS and I am hearing about horrible behaviors and issues that we have not had to deal with. Things at our house could be so much worse. I hear about kids that hit, kick, spit, curse, lie, steal, threaten, and abuse. We’ve got almost none of that going on. People assume much of it is about environment and Sydney is doing so well because of parenting, but I do not think that is it. Really good parents are dealing with a lot of the kids who struggle so much more in life than Sydney does. FAS is a spectrum disorder and some kids are handicapped in ways others have not been, depending on the amount of alcohol consumed and the time of the consumption. Also, alcohol exposure in the womb affects some babies more than others. I read of a set of fraternal twins who were affected differently by their mother’s drinking. Although both were obviously exposed equally, one twin was much more handicapped in life than the other.

One of the first things I read after Sydney’s diagnosis was that children with FAS do much better in homes with reasonable expectations. I had to learn to parent Sydney much differently than I have parented my other children. In the beginning, before I understood Sydney had a disability, I made demands of her that were unrealistic. Once I understood that she was doing the best that she could do, our lives became so much better. Sydney’s doctor has told me that a good rule of thumb for kids with FAS is to divide their age in half and treat them correspondingly. Of course, they are not all the same and some of these children are functioning at a level that is equal to their peers in many aspects. On the medication for the ADHD symptoms Sydney almost appears as mature as her typically developing peers at times.

I have noticed a few of the parents I have met online seem to be setting expectations for their children that are unrealistic and punishing their children for the lack of impulse control. Holding a child with FAS to the same standard you hold his peer to is unfair and even cruel. No one would consider punishing a deaf person for the inability to hear and a child with FAS should not be punished for the brain damage they cannot help. A child without impulse control may steal and lie on a regular basis. They do not steal because they have a need and they do not lie because they even have a motive to do so. They do it because their frontal lobe is damaged and they are just acting on an impulse. They have no plan. They have no real agenda. They have no ability to think about the consequences of their actions.

Does that mean that we just give up and stop trying to teach our child with FAS? Of course not! We keep trying and sometimes after hundreds of repetitions, we see a new skill mastered or a new lesson learned. But unfortunately, sometimes, even the skills we think are mastered, disappear and we have to start over again because that is the nature of FAS. We take baby steps, set small goals, and celebrate minor victories. Also we do not set our child with FAS up for failure. If a child with FAS loves chocolate and you do not want her to eat more than one chocolate bar then do not leave a package of six chocolate bars on the kitchen counter! If a child with FAS has trouble staying in bed at night then put an alarm on her bedroom door. If a child with FAS hits her baby brother then do not leave them alone in a room together.

There was a time, for a long time, when I was resentful of Sydney’s birth mother. I blamed her and despised her for the life sentence she had given Sydney… and myself. Because truthfully, Sydney’s life long disability will be with me until the day I die as well. I do not really feel that resentment any longer. I only feel pity. I feel pity for a woman who was probably so addicted to alcohol that it controlled her. I feel pity for a woman who was probably in a horrible situation. She had two children already that she was unable to care for adequately and was about to give birth to another that she would be unable to keep. Perhaps she turned to alcohol to ease that pain. I think I probably let go of the anger and resentment toward Sydney’s birth mother about the same time I was finally able to let go of a lot of my unrealistic expectations for Sydney and truly bond with her as if I had given birth to her myself. If you have not already, now would be a good time to read the post I wrote recently called “Falling In Love With Sydney.”

Other posts you might like to read about our life with FAS: Sydney, Age Six and Teaching Sydney.

Find us on Facebook at Quirks and Chaos. Find us on the web at www.quirksandchaos.com

Tate's wisdom x 10

These are things that made me giggle this past year or so. I wrote them down and put them in a file.  I went through them today. What do you think? Funny or not?

1. Tate’s bank was full of change. I said, "Want me to take this down to the bank and get your money counted? They will give you dollar bills for the coins." He said, "No thank you. The coins are really high-strung. We don't want to scare 'em."

2. Tate saw a box marked FRAGILE and asked, "Hey, why do you have a box of Fragile?”

3. I was heading into a store with Tate and he said, “I don't see any robbers.” I asked, “What does a robber look like?” He said, “They’ll be wearing black uniforms."

4. My older son and I were discussing spy / detective type things. He said, "I know a good way to tell if someone is following you?" Tate piped up with, "You look behind you."

5. Tate got into the car after school and as usual I asked, “Did you learn anything today?” He said they had learned about Christopher Columbus. I asked, “What did you learn about him?” Tate responded, “He’s dead.”

6. My kids were trying to find a show they could agree on. My daughter said she’d like to watch The Bionic Woman. Tate said, “Anna Biotic Woman?” I said, “Antibiotic? This is bionic not biotic” and I explained what bionic meant.  Tate said, “A woman Superman? I don’t think so.”

7. I was sitting with Tate. He broke the silence with, "Hey, how 'bout we talk about Count Dracula?" I said, "Um okay, what can you tell me about Count Dracula?" Tate replied, "He's been dead since 1938.”

8. Tate’s teacher tried some word association with him. She asked what a fork and spoon had in common. He said, “They ran away together.” (I think it was actually THE DISH who ran away with the spoon!)

9. I got a perm and then picked my kids up from school. The oldest one said, "Did you change your hair?" I said, "yeah." Tate jerked his head around and asked, "What did you do with your old hair?"

10. Tate was studying Egypt in Social Studies. He told me that the Egyptians had build pyramids with their feet. It took me a while but after some back and forth discussion, I finally understood. My literal kid may have become confused when the teacher explained the height and width of the pyramids, in feet.

And a bonus: Our cat Tom was looking in the door. Tate does not like cats but they seem to adore him. Tate's brother Levi began to try to convince me to let the cat inside. Levi started with, "that cat deserves.... " then Tate cut him off with "....a ticket to the animal shelter."

Tate's little sister Sydney was being tormented at school by a boy who kept calling her “gross.” I told her to pretend the boy was invisible and not to interact with him at all. Tate was truly trying to help and piped up with, "I have an idea. Go to school tomorrow and pretend you are not gross."