Autism parents have a lot in common

My son Tate is fifteen. Tate has autism. He was about two and a half years old when he was diagnosed. Parenting a child with autism is challenging at times, but also very rewarding. We have had a lot of interesting experiences over the years and gotten to know a lot of others who are also a part of the autism community. So many of our stories and experiences are similar. I recently decided to illustrate some of the most common and repeated scenarios I have heard about from others in the autism community and/or experienced myself. They are in no particular order.

If you can relate let me know. I will be adding to these so tell me what kinds of things happen to you the most: annoying things, rewarding things, kindnesses shown, and the ways you’ve had to educate others. I would love to hear from you. Contact me on my Facebook Page called Quirks and Chaos. The comments are temporarily turned off here.

We are all in this together!  -Lisa

You might also like this post: You may be an autism parent if...

The Faces of Friendship

There you are in the grocery store, the face of kindness. My son is walking beside me as I push the cart and you walk quickly to catch up to us. You are shopping with your mom too. You call my son Tate by name and greet him enthusiastically. Tate mumbles a response, barely looking your direction and wanders on ahead. You tell me that you go to school with him and when I thank you for speaking to him so nicely and I try to make an excuse for his lack of interest in you, you say, “Oh I know. That’s just how he is.” You call, “See you at school Monday Tate!” and as you walk away, my heart sings knowing there are peers like you who genuinely like my son for who he is, autism and all.

There you are in the school auditorium, the face of consideration. My son and I are attending his sister’s school play. We find our seats in the school’s auditorium. You come, dragging your mom by the hand, and sit beside Tate. You speak to him and introduce him to your mom. I ask Tate to introduce me to his friend. He says he does not know your name. I cringe inside but smile, hoping you understand. I tell you that Tate has trouble matching faces and names. You tell me you already know that, assure me it’s okay, and you politely introduce yourself and your mother to me. You try your best to engage Tate in conversation and you make a little progress, while your mom and I listen and make a little small talk over the tops of your heads. I am very impressed and thankful my son is learning social skills from peers like you.

I am at the Junior High school, sitting in seventh grade Science class. I've been invited by your teacher to hear Tate give his presentation on the solar system. You are there, so many of you! You are the faces of encouragement. Tate stands in front of you proudly, a big smile on his face. It never occurs to him that you might not be impressed with his modified school work or the presentation his Paraprofessional helped him to put together. Your presentations were much more detailed and they were done independently but you show Tate the same courtesy you showed the peer that presented before him and the one who comes after. My heart melts knowing you respect my son and make him feel like a part of your class regardless of his abilities. I so appreciate you!

There you are in a department store, the face of compassion. I’m out shopping and feel eyes on me. I look over to see you smile and you ask, “Are you Tate’s mom?” I say that I am and you ask me where he is. I tell you he is home. You tell me you eat lunch with Tate sometimes. I tell you how much it means to Tate’s family to know the kids at school are so kind to him. You smile and tell me it is fun to eat lunch with Tate. You add that you have learned more from being Tate’s friend than he has learned from you. I ponder this, as I know Tate is not what most kids would consider “fun” or is he able to do the classwork that the rest of you can do. He is hard to converse with, sometimes seems rude, he does not understand social cues, and he performs below grade level in every subject. But you know that. You know how he struggles to understand friendship yet how much he needs friends. You know how he struggles to process language, especially when it is spoken quickly. You are willing to be the kind of friend a kid with autism needs, a friend who has to give more than they receive, a friend who has to slow down and give Tate time to process before he can respond. And you are okay with that. My heart swells with gratitude.

This evening I need to find the face of understanding. We have come to a music program. Tate is to sing with his classmates. I hoped you would be here at the entrance to the school and I see you walking in right ahead of us. I stop you and ask you if you know where Tate should go to find his group. You tell me you know exactly where to go and you say, “Come on Tate. Follow me.” I call to you as you disappear into the crowd, “Thank you!” I feel blessed and relieved to be a part of this community where I can find these willing faces all around us.

I see you at a school picnic, the faces of acceptance. Tate’s class voted and chose to go fishing at a lake as their end-of-the-year-event. We considered skipping it because Tate is not interested in fishing at all. He does not like to get dirty and I figure he will most likely spend the evening asking us how much longer we have to stay. We decided he should go and as our family pulls up to the lake, several of you approach our van, calling Tate’s name and asking him to hurry and join you. He says, “My friends are here.” He follows you to the gathering and we bring up the rear. My heart smiles at the knowledge that my son has friends. He has friends and he is accepted, autism and all.

As a part of the autism community I often hear of prejudice, intolerance, hate and bullying. We’ve seen very few of those things in my son’s life. Perhaps it is because we have been open about his autism diagnosis since kindergarten. Perhaps it is because we made sure his classmates were educated about autism. Perhaps it is because of the lunch buddy program and the other social coaching programs his peers have participated in with him. Perhaps it is because we live in a small town and a close-knit community. Perhaps we just got lucky and my son has a class of exceptionally caring peers whose parents have taught them about friendship, kindness, consideration, encouragement, respect, compassion, understanding and acceptance. Perhaps it is a combination of all of these things. 

If you liked this post, you might like to read Building Tate's Friendships.

Building Tate's Friendships

People are so amazed that my son with autism has friends and I get that. I marvel at it myself. The very description of autism is about as far from the word “friend” as a person can get. Words like: aloof, detached, and indifferent, are descriptive of autism, right? So how can a kid with autism have a friend or be a friend?

Below are the components that were used to create the friendships Tate has. This may not work for everyone with autism but these are the things we did.

Kiindergarten

Inclusion: Tate was in the classroom with typically developing peers for most of his day in grade school. His peers became very familiar with his behaviors and his needs. In Junior High Tate spends a lot more of his day in an individualized education setting because he works at a much lower grade level than his peers. However, the relationships developed in grade school are still being nurtured often in various settings.

Education: This one is HUGE. We never hid Tate’s diagnosis from his peers or their parents. When Tate did things that seemed odd the kids could ask questions and they were given age appropriate information. I asked Tate’s teachers to read books about children with autism with their class. When people are given correct information and educated they are not left to come up with their own version of the truth. Tate was never thought of as “weird” because his classmates and their parents were educated about autism.

Social Skills Coaching: Tate had full support at school. An adult was constantly giving Tate instruction in social skills. On occasion, members of Tate’s IEP team would suggest Tate did not need support on the playground but instead needed free time (which would have been used by Tate to pace alone and stim). I insisted the playground was a crucial time for him to receive coaching. This playground coaching played a large part in developing friendships. Tate was pushed to play with peers and peers were encouraged to include him in games and to give him support themselves. The Paraprofessional was able to stand back and watch as the other children engaged Tate in play sometimes.

Lunch Buddies and Other Social Skills Programs: We had organized social skills programs for Tate. The speech teacher came into Tate’s classroom twice a week in the early grades and organized board games and other activities for Tate and a few peers to engage in together. She coached the peers on how best to interact with Tate while she was coaching Tate on how to behave appropriately. We started a lunch buddy program in second grade and it was invaluable. Today, social skills are still a part of Tate’s daily education.

An Advocate: Many of the programs and supports Tate needed to develop friendships would not have been put in place had we not hired an advocate. She occasionally observed Tate at school, made recommendations, and always came to our IEP meetings. Our advocate was more knowledgeable about autism and the law than many of our IEP team members. She could often provide data to support her reasoning and she requested and received things for Tate that I had never thought to ask for. An advocate is very expensive but ours was worth every penny. Note: If you cannot afford an advocate my advice would be to get a Wright’s Law Book and study.

Tate and his buddy Jordan
Sixth grade

Willing Peers: Without kind, willing peers Tate could not have friends. We had willing peers with compassionate parents who allowed their children to be pulled from other activities occasionally to be peer models for Tate.

Tate and his Paraprofessional Richie
Fifth grade

Teachers Who Were Vested: We have had some rock star teachers involved over the years. Not every teacher was willing to work hard or believed in what we were doing but most did. The speech teachers have usually been the ones to drive the lunch buddy program for us but others have helped too. Tate’s Paraprofessionals had to shoulder the majority of the responsibility much of the time as they are the ones who spend the most time with Tate. They reinforced all the social skills lessons into all aspects of Tate’s day. Without all these hard-working adults we would not have gotten far.

Parents Willing To Work: No one’s involvement is more important than the parent. We badgered administrators and teachers for programs we thought really mattered and we were not afraid to ask for things they had never done before. We paid for an advocate. We provided books about autism and social skills to teachers. I dropped donuts off at the school occasionally for the students participating in the lunch buddy program. I volunteered at the school and tried to keep an eye on Tate and his progress from the sidelines. I had to invest time in getting to know other parents. Other parents were not going to be willing to allow their children to have play dates with mine if they barely knew me. I had to “borrow” their kids after school occasionally and go to the park or get ice cream. And during those times I was the social skills coach. Early on Tate was not thrilled when I arranged play dates but I did it anyway.

Tate (in purple) and his buddy Ethan (in blue)

Patience: It did not happen over night. Tate was in class with some of these kids for four years before he could tell them apart or remember their names. It took ages for Tate to develop reciprocal relationships with these kids and it took a lot of hard work. Tate had to be taught really basic social skills and those had to be reinforced for years. His peers had to be educated about autism and the adults in Tate’s life had to utilize every opportunity they could find to work on social skills. At the beginning a lot of Tate’s relationships were very one-sided. The peers were nice to him but he was not interested in them. We did not give up. I can honestly say that Tate has friends his own age now. He is able to actively participate in friendship. I did not know if we would ever get here but we have.

Tate's Lunch Buddy Program Described

Since my last post, Thank You to The Class of 2020, I have had numerous requests from people asking me to describe the lunch buddy program. The following describes Tate's lunch buddy program. Part of the beauty of a lunch buddy program is that it can be "tailored to fit" and changed as needed. 

I first heard of lunch buddies when I was at an autism conference before Tate ever began school. As soon as I heard the program described I was “sold” on the idea. I began asking for a program for Tate when he started first grade. After we discussed the lunch buddy program at a meeting and considered it for first grade, it was agreed that we would wait and begin it in second grade. There were several reasons involved. We already had several social skills “programs” in place that first year of all-day public school and they were very time-consuming for the staff. The speech teacher had launched a social skills group for Tate, pulling peers from his class two or three times a week to play games and encourage Tate to interact with his peers. We had an adult coach with Tate at recess prompting him to play with peers so he would not wander aimlessly, isolated or lost in repetitive behaviors. Tate was struggling to learn the names of his classmates so photographs of all his classmates were obtained and he practiced naming them and matching children to their names as part of his day. The school staff was working hard on so many things that the lunch buddy program was put off.

When Tate began second grade, at my insistence the lunch buddies program was added. The purpose of the lunch buddy program was for Tate to learn social skills that he could then generalize into other settings. Our hope was to teach Tate skills by coaching him and eventually fading the prompts. Let me be clear: a lunch buddy program by itself is not going to teach your child all the social skills they need to learn. It is one of many things we have done to help Tate learn social skills. The skills he has learned from the lunch buddy program have been reinforced over and over throughout his day since we began the program. Mastering skills was not something accomplished in one year. Tate has had a lunch buddy program for five years and it has taken a very long time to see a lot of results.

Buddies

The lunch buddy program has been successful, in that Tate can sit amongst friends in a lunch setting and be fairly comfortable. Tate has learned skills and the coach has been faded much of the time. Tate still has autism but he is able to handle himself and respond appropriately in so many situations now due to all this coaching. As it turns out I often hear from the parents of the typically developing children who have participated that their children have learned so much from Tate. They are thankful that their children have learned about autism and have become very comfortable around my child with special needs. Among the things these children have learned are compassion, understanding, patience and perseverance. They also have a pretty good idea about what autism is and could probably generalize what they have learned to interact with other people with special needs.

I am a firm believer that the children who participated should be told about my child’s disability. I do not believe the lunch buddy program would have been successful for us without the full-disclosure that I insisted upon. Explaining WHY Tate is different than they are and WHY Tate NEEDS so much more instruction than they do was key. Children who are educated about autism are far less likely to bully a child with autism in my opinion. I do not have statistics on this. I did what made sense to me. I insisted from first grade on that Tate’s classmates be told that Tate has autism and then given an age appropriate definition of autism. I wrote a personalized definition with illustrations in a picture book format for the kids. It started out very simply in first grade and got a little more detailed with each passing year. See the book in my post: What is Autism. When Tate was in first grade I wrote a note to parents that went home in the first graders’ backpacks, explaining autism and letting them know their child had a classmate with autism. I wanted to take the mystery out of the reasons that Tate was followed around by a Para-Professional throughout his day. I wanted parents to be ready with an answer if--and when--their child came home and asked questions about Tate.

The lunch buddy program has evolved a lot over the years. We learned what worked and what did not and tweaked it as we went. In grade school there were parent permission slips that had to be signed so the students could participate. Tate’s whole class wanted to be involved and got those permission slips back quickly. The kids LOVED teaching Tate. When we began, in second grade it started with one teacher or Para-Professional sitting with Tate amongst several of his peers. His peers were coached before lunch some on how to try to involve Tate in their conversations. Tate was very hard to engage back then. He would talk to adults but not children easily. The kids would ask him questions they had rehearsed with a teacher in a short meeting. A peer might ask Tate, “Do you have pets?” Tate would answer, “Yes”. The adult would maybe have to whisper to Tate and tell him what to say next. So Tate might be coached to say, “I have a dog and two cats.” The peer would respond appropriately and maybe ask the names of the pets. The adult coach would push Tate to answer questions and then reciprocate to the child who had done the asking. So Tate would be told to ask, “Do YOU have any pets?” It was amazing to see the difference in the typically developing children and Tate. The peers just knew how to respond and keep a conversation going, whereas Tate had to be told. The peers knew they should reciprocate with another question and keep the “ball bouncing” while Tate did not. Heavy prompts had to be used for Tate back then. After trying these very scripted types of things and Tate not making a whole lot of progress, it was determined that the lunchroom setting was pretty overwhelming for Tate. So, instead of the noisy lunchroom, they moved to a classroom or the library where it was quiet and Tate would be more comfortable. Tate never eats a school lunch and has taken the same lunch from home for seven long years (peanut butter sandwich-no jelly, chips and a couple of cookies.) The kids that wanted to participate in the lunch buddy program after that first year would bring a sack lunch and commit to being a lunch buddy for a week at a time. Usually there were two or three kids who would eat with Tate for a week. The kids’ questions and conversation starters were scripted with note cards beside them or even written on a placemat. The kids got so good at doing this that a lot of times the “cheat sheets” were not used. The students became therapist themselves and the teacher would often sit back amazed at how well the kids were doing. Conversation skills are not the only thing that is worked on during lunch. Posture and body language is also constantly targeted. Keeping Tate from stimming with his hands and fingers and just looking odd in general has been a huge part of the lunch buddy program.

These two boys are always good to Tate.

Because recess came right after lunch the program was carried over into the noon recess. The lunch buddies were asked to try to engage Tate in play at recess too. Tate often declined or tried to decline but his adult coach was right there encouraging him to participate in the peer activities.

For sixth grade Tate and his class moved to the junior high. The lunch buddy program continued. Tate and his lunch buddy group sat in the lunchroom that year, but at a table off to the side. It was still noisy and a bit overwhelming but doable. An adult was present every day but if the kids could keep the conversation going and Tate interacting the teacher was able to sit back and watch.

This year Tate is in seventh grade. Tate is sitting at the long tables with his peers three days a week with a teacher observing from a distance. If he becomes distressed or looks overwhelmed they go in and “rescue” the situation but the kids are always friendly and willing to help Tate too if they can. Two days a week the lunch buddies are back at the small table off to the side with a peer or two and a teacher. They are working on reciprocity and the coach is prompting Tate when necessary to ask APPROPRIATE questions and not just repeat the same question that was asked of him. (Read my blog post on reciprocity.) One day each week a Resource Room teacher is the adult at the table and one day a week the speech pathologist is the adult at the table.

Tate with two fantastic teachers, 6th grade

There are a lot of variables involved in a successful lunch buddy program. I have mentioned the education of the students so they understand the child’s disability as one of these variables. Another is very obvious. You must have students willing to participate. We were lucky. The kids LIKED being Tate’s teachers. It made them feel important. The staff involved often praised these kids and let them know what a difference they were making. When Tate was in grade school I occasionally took donuts to the kids who were participating in the program. Without the kids motivated to help there would have been no success. Another must, also an obvious one, is a staff that is excited about the program. If the staff had not jumped on board and made the lunch buddy program FUN and interesting then the peer models would NOT have been motivated to participate. Tate has been blessed with several rock-star teachers who love their jobs. Lastly, I had to be vested in the idea. I pushed and pushed and pushed some more for social skills teaching in every IEP meeting we had and followed up to make sure things were happening. Let me insert here. I have had good relationships with almost all of Tate’s teachers and Para-Professionals. Had we been using our energy to argue instead of using it to help Tate then the lunch buddy program would have probably failed.

One more disclaimer here: Tate still has autism. Tate’s social skills are still very poor compared to his peers. He still is not really keeping up his half of a friendship with these kids at all.  Tate has peers that are so good to him and so friendly but he does not have nearly as much interest in them as he should. He is sometimes even rude to them because of his poor social skills. We have seen VAST improvement though because of the lunch buddy program. I remember reading when Tate was newly diagnosed that it would take hundreds of repetitive trials to teach him the things that other children were just absorbing from their environment. Tate has had over nine hundred of these lunches with his peer models and adult coaches at this point. I am confident I can say that I would be living with a “different” Tate had he not had this program in place.

You might also like to read: A Friend is a Guy Who Likes You. 

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