Paraprofessionals: Angels Among Us

I was asked to write a post about the qualities of a good paraprofessional (para). I could hardly do that without saying a few things about the super paras Tate has known.

When you have a young child with an IEP in public school, the paraprofessional is often the person with the most influence in his life for the school day. Yet, those valuable people are paid the least, frequently taken for granted, and given almost no voice sometimes. It is an upside down world we live in. If there was a Paraprofessional Hall of fame, some of the folks I am about to tell you about would have a plaque there.

Tate and Sydney with Shelly

When Tate began school, we stepped into an ideal situation in some ways. A Kansas University student who had been working with Tate in a preschool setting needed to spend a semester in a public school setting to fulfill her graduation requirements. She applied for the job as Tate’s para and was hired. Shelly was not a traditional student. She had kids and she knew first hand what it was like to have a son with autism. Her son was older than Tate and nonverbal. Because of Shelly, the transition from Tate’s private early intervention program to public school went very well. Shelly already knew Tate’s strengths and weaknesses. She was energetic, excited, and fun. Kids were drawn to her like moths to a light. Social skills teaching opportunities abounded. If playing with Tate meant they got to be with Shelly, the kids were always willing.

In my opinion, Shelly knew far more about autism than anyone else in the school building that year but no matter how many times I asked, I was not allowed to bring her into our IEP meetings or ask for her input. The reasons are not really valid ones in my mind. There was: Paras do not have the education teachers do. And: It would violate your child’s privacy. Then: We need the para with your child during the meeting. And of course: We are not required by law to allow it. I don’t know how many times I heard about how highly qualified my son’s para was but when it was time for the IEP meeting the para was not qualified “enough” to have a voice.

Tate's wonderful Miss Grace,
2nd grade

The next Para who made a real impact for us was Miss Grace. I smile just typing her name. She made learning fun. She often went far beyond her paid duties to help make a real difference in Tate’s life. In first and second grade, Tate cried often in the morning because he did not want to go to school. A reminder that Miss Grace would be waiting for him could sometimes turn him around. Miss Grace is beautiful and Tate was enamored. She could cajole Tate into touching finger paints or clay, and doing a lot of activities he disliked. Miss Grace really got to know Tate and she genuinely liked him. She is very outgoing, taught him a lot about teasing, and she was with Tate as a coach through many of those playground interactions with his peers that his IEP called for. Grace is likely responsible for much of the social progress Tate made in the primary grades. To this day when we run into her in the community, she can engage Tate in twenty minutes of active conversation without breaking a sweat. I am his mother and I can rarely do that. Miss Grace has a gift and I will forever be grateful she shared it with us.

Tate was without para support for a while in third grade and substitutes were coming and going. One day I happened to be at the school when a new sub showed up. His name was Richie. I did not know it at the time but Mr. Richie was to become my hero. In the paragraph above, I said that I smiled when I typed Miss Grace’s name. My vision actually blurred with tears when I typed Richie’s name. Mr. Richie was everything we needed and has made a life-long impact on us. I can imagine we will still be referring to Mr. Richie when Tate is old and gray.

Mr. Richie and Tate, 3rd grade

There was a bit of an ironic beginning though. Richie is black, and Tate in his younger years had been quite racist, much to our embarrassment. Tate was not taught this by example I can assure you! Like many other irrational fears that come with autism, Tate was uneasy around “brown skinned people” in his own words. The first day Mr. Richie showed up, I walked over to the teacher to warn her Tate would likely be rude and even fearful. But thankfully, I don’t think Tate ever noticed Richie’s skin color. If he did I never heard about it from anyone. And if Tate had been rude, Richie probably quietly laughed about it, understanding that autism often causes misperceptions. Richie just “got it” from the very beginning.

Tate with Mr. Richie, 4th grade

If I were limited to two words to describe Richie, they would be: “autism whisperer.” But fortunately I can say much more. Mr. Richie was with Tate for much of third grade, all of fourth, and all of fifth grade. Mr. Richie has a huge presence but I don’t know how he does it because he is one of the quietest guys I know. He taught Tate to do things no one else was having any luck at. Mr. Richie always seemed to know what Tate was thinking. He could talk Tate down from a meltdown as well as I could have myself. Maybe better. He was firm yet kind. Academically Tate did very well with Mr. Richie at his side too. Richie was good at getting Tate to try new activities and foods. Tate wanted to please Richie because he cared about what Richie thought. THAT is huge in our world. Tate does not show much affection or appear to have much interest in many people other than family; but he connected with Mr. Richie. Mr. Richie taught Tate many social skills. That lunch buddy program I am always blogging about had a waiting list because the kids loved eating with Mr. Richie probably much more than they liked helping with Tate! (Tate's Lunch Buddy Program Described)

Several times Tate got frustrated enough with Richie to say, “You are fired!” Once was when Tate had become obsessed with his watch. He used his watch as a visual stim and would stare at his watch to see the numbers change when he should have been doing his classwork. Richie occasionally had to take the watch away from Tate. No one but Richie could have taken that watch and still gotten Tate past the meltdown and refocused on the task at hand. Autism whisperer, I’m telling you.

Team Tate is amazing

The Junior High transition had the potential to be a real nightmare but in stepped an amazing new para named Miss A. She is young, full of enthusiasm, always has a smile, and is as much a friend to Tate as she is a teacher. I do not think sixth grade would have gone half as well as it did without Miss A. This year Tate has Miss A with him part of the day but he has also graduated to rotating through Paras as he goes from class to class. There are four total and I like all four of them! More importantly, Tate likes them all and they are really good with him. 

I understand that not everyone has the experiences that our family has had with wonderful, caring paraprofessionals. I’ve heard stories from teachers and other parents, of paras who hurt or neglected their child. One teacher told me of a para who slept through parts of their day in her classroom. I hope those are the exceptions and most people are having the kinds of experiences we have had.

And that brings me to the topic I was asked to write about: What makes a good paraprofessional? Of course many of the qualities of a good para are obvious. A para needs to be kind and compassionate, enjoy children, and have a good attitude-- even when the job is messy or hard. The para must be able to teach at the grade level of the child they are helping. If a para is helping in the high school in an algebra class but cannot do algebra then no one is going to benefit. A para should be physically fit enough to stick with the child they have been assigned to work with. Tate needed social skills coaching on the playground when he was in elementary school. Tate also required para support in PE at times. His para was sometimes called on to run up and down a soccer field or play kickball. Some kids with autism have elopement issues too. A para needs to be able to keep their young charge safe.

Then there are qualities that might not be so obvious. A sense of humor will sure come in handy. It is important not to take it personally when a child with autism says what they think. Many times Tate has reported to one of the adults in his world that their skin is a bit wrinkly or they are getting up there in years. Sometimes these kids are funny! Enjoy them! I love it when I get a note from one of my kids’ teachers sharing something fun they have said or done. I will add this disclaimer, before I get messages: Of course, there is a difference between laughing about something kids say or do, and laughing at them in a mean-spirited way.

A para should not be squeamish. A person hired to work with a handicapped child should not be afraid of sticky fingers, sneezes, drool, or puddles of any other bodily fluids. A para might be called upon to teach a child to: blow their nose, comb their hair, use a fork, button, zip, tie, wipe or wash, among many other things. A para might be asked to teach using: water, sand, dirt, clay, shaving cream, paint, or many other substances.

A para may need to learn sign language, braille, or other skills just so they can work with one student. My kids’ paras have had to do some things they may have never considered when they applied for the job. Some skills might seem insignificant yet make a big difference for the child. One para has spent hours of hard work teaching my little girl to play one song on the recorder. The other students in her class were onto much harder pieces by the time my daughter mastered that first song: Hot Cross Buns. The para was probably hearing that awful whistle in her dreams at night due to all the time it took, but she was so patient. I had given up all hope of Sydney mastering that song but the para had not. I had even asked Sydney’s teacher if they could just “skip” the recorder but Sydney insisted she wanted to learn to play that recorder, just like her peers. Because of the tenacity and patience of one para, Sydney can proudly play that song. 

Students with special needs can have a lot of energy. Of course some are even hyperactive. On the other hand, students with special needs can be inactive and very slow moving. Either way a para will need to have a lot of energy. My daughter Sydney has ADHD and is hard to keep up with, while my son Tate moves at a snail’s pace. When Tate was in preschool, a teacher once told me she always had an energy drink before working one-on-one with Tate because she needed enough energy for both of them. The more fun and alive she was, the more engaged Tate would be. I’ve never forgotten that. She made a really good point. Paras need to be very engaging; no matter how hard their pupil is to engage.

Sometimes a para has to spend a lot of time taking data and doing paperwork. For many parents, the note they send home is very important and cannot be neglected. (Click here to read about that invaluable note home.) It is a parent’s link to school and helps them to know what their child is working on and how they can help. The data a para is sometimes called upon to collect may seem a waste of time but is very important in determining what kind of help the student will receive. Sometimes a para may not appreciate what is asked of them but they are required to do it anyway. A para must be able to “grin and bear it.”

Paras will be called upon to make personal sacrifices on occasion. A para might be asked to do something minor, like discontinue the use of perfumes so a child with sensory needs can be more comfortable. But bigger sacrifices are asked too. Some paras go home with bruises. There are students who exhibit self-injurious behavior and some who become violent. Paras have to be able to keep the student safe or even defend themselves without returning any aggression. And it all has to be done while staying calm.

Who are these people we ask so much of and pay so little? Who are these people who love our kids and see their potential? Who are these people who have to implement all those “great ideas” our kid’s teams think up while we are in those IEP meetings? Who are these people who keep coming back for more? They are “angels among us” and they are called paraprofessionals. They make a difference in our children's lives every day in little ways that we will never even realize. They make a big difference in our children's lives and whole family's lives in the end too. They help make our children who they become. There would never be enough money or words to reward these people the way they ought to be rewarded. 

Posts you might enjoy: An IEP Tutorial or 12 Things I'd Like My Son's Teacher to Know About Autism 

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

Sydney, Age Six

Once in a while something triggers an old memory that I had all but forgotten, something I would have blogged about back then if I had been blogging at the time. Tonight a comment from a Facebook friend triggered one of those memories. I will always associate this Facebook friend with this particular event.... It was the last day of first grade for Sydney, which coincided with the closing of our small community’s school. It had been quite a year for everyone involved in the education of Sydney as we all tried to manage her behaviors that come with having Fetal Alcohol Syndrome (FAS) and Attention Deficit Hyperactivity Disorder (ADHD). Sydney’s first grade teacher was extremely talented and had taught much of the year with Sydney wrapped around her legs, literally. Sydney’s teacher and I had asked many times for increased services for Sydney without the results we hoped for. Through no fault of her own Sydney was not able to behave herself. There was no keeping her in her seat. She spent most of her day wandering the room and pestering the other students. There was no amount of discipline and no incentive program that could help Sydney control her impulses at the age of six and she was not yet on a medication that made a real difference.

 

That last day of school there was to be an assembly to hand out awards, recognize students and staff, and say goodbye to our small community school. Emotions were running high and tears were flowing. Patrons were both sad and angry because our school was closing. A large crowd gathered in our small school’s gymnasium. Teachers were seated in chairs at the front of the crowded building, while approximately eighty students from grades one through five were seated on the floor. Parents and community members sat in rows of chairs or stood, and the speeches and awards began. Almost immediately Sydney began to wiggle and I began to sweat. What were they thinking sitting her in the midst of all those children without an adult? Sydney’s wiggles turned to bouncing and swaying back and forth. Next, she was putting her hands on the children close to her and trying to engage them in a regular game of tag as they swatted at her like a gnat that could not be dissuaded. I was sick to my stomach. I could not reach her or get her attention without creating a bigger scene than she was making. The teachers were also unable to get to her easily without moving a lot of students. Then, just when I thought I could not be more embarrassed, Sydney began crawling around, weaving in and out of the children, distracting them and causing them to have to shift and move as she crawled around them and over their laps. The seconds felt like minutes to me and I shifted in my seat unsure of what to do. I was wishing the floor would open up and swallow me. I recall hoping that everyone was remembering that I had six OTHER children that DID know how to sit still and they were not judging my parenting on the behavior of my youngest child. I desperately wished I could whisper to the person sitting next to me, “Remember, Sydney was neglected for the first year of her life and she has many excuses for her behavioral issues. The Smiths are really good people. Pass it on.”

I was hoping that Sydney would eventually crawl over to the edge of that crowd. Maybe an adult would be brave enough to grab her and put her in a headlock until I could get out of the crowded seating where I was confined and take possession of my little angel. But as luck would have it, Sydney wormed her way further and further from me, toward the front of the gym jostling children all along the way. And then she was UNDER the chairs the teachers were sitting in, slipping between the legs of one chair after another, right up front where every eye was focused. If anyone had missed Sydney’s performance amongst the children, they surely were not missing it now. I cannot remember now how many adults tried to coax Sydney out from under their chairs as she squirmed her way down the line. The librarian, Lisa Myers, who had a great relationship with Sydney and genuinely liked her for who she was, lured Sydney out from under the chairs and onto her lap. While I was trying to teleport a message to Lisa that went something like, “Get a vice grip on her or she’ll squirm right out of your arms and escape!” this gentle lady was holding six-year-old Sydney lovingly, cuddling her, whispering softly to her, rubbing her back, smiling down at her with genuine affection, and keeping her calm and quiet. When that assembly was over I couldn’t get to Lisa fast enough. I thanked her and I have thanked her again since that day. Lisa did not just rescue the children that Sydney was distracting that day. She did not just help the adults to refocus on the speaker instead of focusing on the chaos my little girl was causing. Lisa showed me an example that I will never forget. She picked up a child that many of the adults in the room (myself included) probably wanted to take out and paddle. And instead of frowning at her, sternly talking to her, or telling her how disappointed she was in her behavior, Lisa lavished Sydney with affection and smiles.

There are two morals to this story…

The first being: The adults in Sydney’s life have often expected more of her than she can give. That day we sat her in the middle of a crowd of children, without an adult to directly supervise, or medication, and expected her to behave like her peers. When Sydney was unable to behave as her peers, I became embarrassed and I was ready to punish her, or at the very least lecture her. Sydney was doing the best that Sydney could do that day. Lisa recognized that. I love the quote by Albert Einstein, “If you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

And the second: Lisa did not know how deeply her kindness toward Sydney would touch me. We can be sure we have influence on the people around us. Whether it is good influence or bad influence is for each of us to determine. When we leave our homes each day we do not know what kind of lesson we might teach someone. You never know who is watching and what impact your example will have on them. The ripples in the water sometimes go far. It takes only minutes to create a great long-lasting memory. It also only takes a minute to wreck someone's whole day or worse. 

So there you have it. The old memory was triggered yesterday when Lisa told me that my kids reflect my hard work on their behalf and that I am a great mom. What she did not know is this: Once in a while when I am ready to throw my hands up in the air, jump up and down, and holler at my little ADHD princess, I think of Lisa and how gentle she was with Sydney that day and instead of the jumping and hollering I am able to pick her up and hug her instead.

For more about Sydney, read Teaching Sydney (Or Trying To)

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