Tuesday, March 31, 2015

The Things Autism Has Taught Me

Tate, age 13
Eight things autism has taught me

My thirteen-year-old son, Tate, has autism. I’ve said often over the last ten years that I hate autism but rarely have I said that autism has been a good teacher. I have learned much from it. I am a better parent and a better person because of autism.

1. Autism has taught me compassion and empathy on a level I never understood before. Watching my son wrestle with his anxiety and knowing he does not understand much of the world around him causes my heart to ache more deeply than I knew was possible.

2. Autism has taught me patience. I have never been a patient person but I almost never lose my patience with Tate.

The whole Smith family, December, 2014
3. Autism has taught me humility. After raising older children that excelled at almost anything they tried, I had become somewhat conceited. I have found it very humbling to sit in the office of school administrators and beg for the help my son needs. I have found it very humbling to have to explain my son’s behaviors to strangers. I see now that I was arrogant, and humbling is exactly what I needed. I am thankful I have been humbled.

4. Autism has taught me that “one size fits all” does not apply to parenting. Children with special needs sometimes need special parenting.

Tate, aged four at his early intervention preschool
5. Autism has taught me a lot about hard work. Autism has moved me to pursue every avenue of help for my son that I can. Autism has called me to be much more involved in my child’s education and has often meant I had to study and fight for the things he needs. 

6. Autism has taught me that hard work pays off. Early intervention was intensive and exhausting but the gains we saw were huge and well worth all the extensive time and effort we exerted. 

7. Autism has taught me not to let my guard down, because although MOST people are kind and can be trusted, not ALL people have pure motives. People with special needs can be easily victimized so a parent must be diligent and watchful.

8. Autism has taught me that people with special needs have a lot to offer. I used to be intimidated by people with special needs. I now know they are just people who might take a little longer to respond or need a little more help to get things done. But they are people and their lives have as much value as mine or anyone else’s. 

If you have someone in your life with a disability, search for the lessons you can learn. As you help that person to be the best they can be, you will likely find yourself becoming better and stronger as well.

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Thursday, March 19, 2015

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. 

Friday, March 6, 2015

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.