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.

Walk Away

I have a fourteen-year-old son with autism and I am very active in the online autism community. The question has been asked of me more than once lately: If you meet a small child who is showing signs of autism, should you tell the parents of the child that you suspect he might have autism? There are a couple of things to consider for sure. How well do you know these people? And how sure are you that your input will be welcome? Unless the parents are folks you know very well and they have asked for your input, you might want to consider biting your tongue and walking away. And honestly, even if you know the parents extremely well you should consider just walking away with lips tightly sealed. Does my answer surprise you?

It is not the answer I would have given ten years ago when I first entered the autism community. Back then I wanted to share my newfound knowledge with as many people as possible. It is the answer I give now though because of the experiences I have had. I have lived and learned. Yes, I am aware that early intervention is the key. Yes, I am aware that many people do not even know what the signs of autism are. Yes, I am aware that a young parent of a first child might have nothing to compare their child’s development to and need some guidance. But I am also aware of a few other things. The shock and disbelief you will probably encounter from a parent when you suggest something may be “wrong” with their child will build a wall between you and them that cannot be knocked down easily. That wall could keep them from coming to you later for advice when they are ready to seek help. Offering unsolicited advice or even a suggestion about seeking a diagnosis might do irreparable damage to the relationship you once had.

If you find yourself wanting to offer unsolicited advice to parents you do not know very well think about this: You probably do not have enough information to make any credible suggestions. Perhaps they already have a diagnosis or a similar diagnosis. Perhaps they do not want one. Perhaps it is none of your business. I did not think about these things when my son was newly diagnosed and I found myself wanting to enlighten those around me. I found very quickly that most people want to keep their feet firmly planted in denial as long as possible. There is something to be said about the bliss of ignorance. I myself often long for the days before I knew what autism is. I was one of those parents who would not have appreciated someone else trying to tell me about autism before I was sure I needed to seek a diagnosis. For a while I forgot that about myself, or maybe I just did not consider how others might feel similarly.

Put yourself in the shoes of the other parent (or maybe you have actually been there already). Have you ever had anyone walk up to you and suggest they know something about your child that you yourself do not know? A parent can go from friendly to defensive, or even furious, in a heartbeat. Would you walk up to a parent at their kid’s ballgame and suggest their kid needs to spend some additional time practicing at the batting cages? It probably would not be met with a friendly attitude. Would you offer parenting advice to parents in the grocery store because their child is misbehaving? I would not recommend it. Would you ask the parent of a child who is limping or stuttering what kind of therapies and doctors they had been to about their child’s “disability?” I can imagine the parent would not appreciate it.

I would make a few exceptions to my rule for not interfering. If the child in question were a relative I would mostly likely offer the parents some literature to read and try to have a conversation with them about early intervention or the signs of autism. If they were not receptive then I would not push. Probably nothing good would come of it. Of course most of my relatives are very educated about autism already because they are a part of Tate's life. 

It is hard. It is hard to see the signs of autism in a child, know what needs to be done to help, that early intervention is the key and time is ticking, and know you have so much knowledge you could impart, and still walk away. It is harder for some of us than others. When you are introduced to autism, you begin to see it all around you: the awkward gait, the lack of eye contact, scripting, inappropriate play, repetitive behaviors and social delays. I have to remind myself often, although I know what autism looks like, I am just a mom of a child with autism. I am not a doctor. I am not qualified to diagnose autism. I also have not been invited to give my two cents. And I walk away.

Tate and Sydney, age 3 and 1

If you do find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, NEVER NEVER NEVER say to the parent, “I suspected that your child had autism.” This actually happened to me and has happened to others I have spoken with. There is the initial hurt of knowing others “knew” but did not tell you. For me, even after I came to realize I would not have been receptive had that friend come to me earlier than I was ready to hear the word “autism,” the hurt was still there. It was sort of “’I told you so’ only I didn’t tell you” and it was so humiliating and painful for me. If you find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, and you are tempted to say, “I knew something was wrong earlier than you did.” then think again. If you bit your tongue in the first place and never said anything then BITE YOUR TONGUE this time too.    

Note: I’m sure I will be hearing from people who tell me they disagree and they were very grateful for advice they received. How without the unsolicited advice of a neighbor, friend, relative, or stranger, they would never have gotten their child the help they needed. I realize I am not the authority on this subject and I realize there are people who do not become offended when someone offers them information about autism. However, I still believe that MOST people would rather not receive unsought contributions from others about their children’s well being. This is just my humble opinion. As hard as it is I try to bite my tongue and walk away.

Redirecting the Stim: I'd Do It Again

My fourteen-year-old son Tate has autism and my eleven-year-old adopted daughter has Fetal Alcohol Syndrome (FAS). I blog about them, the things we have done that have helped and the things that have not helped: the lessons we have learned, their siblings, classmates, teachers, IEPs, and many other things that have come with the experience of raising these special children. I do this for many reasons. I hope to help those who do not live with autism or FAS to understand a little bit better what these disabilities look like. I also try to help those who are coming after us so they can draw from some of our experiences, perhaps making their own lives just a little bit easier.

I do not claim to know everything and I often remind people that I am just a mom. I am not a doctor, an educator, or a therapist, and I am not formally trained to help anyone. I just know what autism looks like in my son and what FAS has done to my little girl. I have years of experience to share. The ideas and methods we used are not something I believe must be followed to achieve success. I know sometimes there is more than one solution to each problem we encounter and I know the individuality of a child and their family should be considered. There. This paragraph is my disclaimer. So please no messages about how I’m doing it all wrong or that I'm judging you for doing it differently...

Tate, around the time of his diagnosis

There are some things I would do exactly the same if I were doing things over again. All the early intervention we did with Tate and the Applied Behavior Analysis (ABA) was absolutely invaluable. All the money we borrowed was worth it. I have been told by a few other bloggers that ABA did nothing for their child with autism but for us it was life changing. The advocate we take with us to Tate’s IEP meetings is something else I would point to as absolutely necessary. Tate has had services I would have never obtained without her help. So far no one has steam coming out their ears, right? But wait for it. Some of you will not like what I have to say about stereotypic behavior.

I have often heard, “Every behavior has a purpose.” ABA therapy revolves around this and I do not disagree. ABA also says that the stereotypic behavior serves a purpose of some kind but that behavior can be replaced with one that will serve the same purpose. In other words, "If you eliminate one stim then it will be replaced with another." I found this to be true. Tate still stims but his stims are subtle and they do not keep himself or those around him from learning or engaging in activities or with other people. It took a lot of hard work to eliminate some of Tate’s former stereotypic behaviors but I am not sorry we did it. In my opinion the hand flapping was not in Tate’s best interest.

Anytime I write about this I get objections from a few parents who do not understand why I stopped Tate from hand flapping when he was a preschooler. I hear: “It’s not hurting anyone.” And then there is: “I would never ask my child to stop doing something that was calming/comforting/pleasurable/satisfying to him/her.” Really? Are those statements even valid? What if your child were pulling his sibling’s hair? It is a behavior that he finds satisfying, right? Of course you would stop him from doing that because it hurts another person. Would you do your best to stop your child from smearing his feces? You would? Okay. You would want to stop him from doing something that was unhealthy. How about head banging? If he were banging his head on the floor over and over then would you stop him from doing that? You’d block him. You’d put a helmet on him. Is it because it is harmful to him? So there are SOME things you would try to redirect but not others. Hand flapping. Hand flapping is acceptable to you because it is not hurting your child. It is not filthy. It is not hurting a sibling. Perhaps your child can learn while he is hand flapping. Mine could not. When Tate hand flapped it did hurt him. It consumed him. It kept him from learning. Our goal was to make every minute of his day a learning experience. He could hand flap, fan the pages of a book, wave his cloth diaper in front of his face, stare at his reflection, or run “without purpose” for thirty minutes to an hour at a time. The more Tate stimmed, the more he wanted to stim. The stereotypic behavior itself was reinforcing. It was a habit. The more Tate engaged in stereotypic behaviors the less opportunities he had to engage with his peers. His peers saw the hand flapping and some of the behaviors as odd and they approached Tate less because of it. The stereotypic behaviors were sabotaging so much of Tate’s social and academic education. As difficult as it was to get four and five year olds to look past the stereotypic behaviors, I imagined it would be infinitely harder to get peers in Junior High to be understanding of it. Perhaps Tate would have just "outgrown" the behaviors like hand flapping. Some children do. But some do not. I was not willing to risk it and have to look back and wish I had tried to eliminate them. We replaced the more obvious stims with much less obvious ones that still serve the purpose he needed them for. 

Sydney, age one

Sydney came to us with stims too and I worked hard to eliminate those. Being neglected for the first ten and a half months of her life she spent much of her day rocking. The rocking had a purpose. Children who are neglected find ways to stimulate, and occupy themselves, and comfort themselves. After we got Sydney home and I knew she was provided with all the things she needed to thrive I worked constantly at gently stopping her when she rocked. It did not take very many weeks to stop the rocking. I am so thankful I did what I did as I have seen another adopted child older than Sydney who still rocks. The advice that child’s parents got was to allow the rocking because it fulfilled a need. I feel the need could have been fulfilled in other ways. I could be wrong. I'm not an expert. But in my experience with my children: the longer a behavior goes on the harder it will be to stop.

Some might think I was mean or intolerant. Some might call what I did "tough love." Once a mom who was upset with me for a blog post I wrote implied she loved her child more than I loved mine because she embraced his stimming. She said, "I love my child enough to let him stim." I wish I had said, "I loved mine enough to help him to stop." but I am never good at witty comebacks. There is no doubt in my mind that we all love our children immensely regardless of our position on this subject and others. It does not mean you are a better parent if you let your child hand flap or rock. It does not mean I am a better parent if I stop mine from doing it. We all want what is best for our children. I drew the line before some others would I am sure. Some might draw it before head banging or hair pulling but I drew it before hand flapping and rocking. And I do not regret it. I cannot go back and do it another way to try and see which way worked best. I am glad I do not have to. It was hard work. It would have been much easier in the short term to let Tate spend his days tossing his cloth diaper around and hand flapping. It would have been so much easier in the short term to let Sydney sit in her playpen and rock. But would I have kids as high functioning as I have now? What do you think?

There are a few things I have changed my opinion about and wish I had done differently. I will have a post up about that soon. I had originally thought I would talk about those things in this post too but I am told a post more than 1000 words is too long. So stay tuned…

Tate's a Winner, at Pictionary and More

Tate recently decided he'd heard enough
from his sister and silenced her. 

A couple of weeks ago we were invited to the home of friends for dinner. They have a pond behind their home and we all planned to do some fishing after dinner. Some of us were looking very forward to the fishing. One of us was not. Tate does not like to fish. He was not excited to be going on this outing at all, but that is not unusual. As luck would have it though a storm rolled in just after we arrived and we were stuck inside for the evening, fishing out of the question. This was quite okay with Tate. He goes everywhere prepared, with his tablet and his iPod. So Tate settled into a corner on a cushioned chair for the evening, pulled up a YouTube video and put in his headphones, shutting us all out. There were seven adults, two small children, and five teens present. The little ones ran off to play and the rest of us decided to play a game. We settled on Pictionary on the Nintendo Wii. We split up into three teams and someone asked Tate if he wanted to play. I was sure he would say, “No.” I’d have bet on it. He said, “Yes.” I was shocked and a bit apprehensive. I thought the team that got Tate would have a definite handicap and they would have to be awfully patient. After all, without much “theory of mind” he would not be a lot of help guessing at what others were drawing. Drawing has never been a strength for TateTa either…. But, no one was worried about winning or losing. We were all just a bunch of friends having fun.

Can you guess what Tate drew here?
The answer is in a note at the bottom of the post.
See if you guessed correctly. 

Each time it was Tate’s turn to draw we asked him to pick from the “Junior” words while the rest of us played using the “Adult” words. One person from a different team always looked at the word Tate was to illustrate to make sure he knew what it was and then that person would excuse himself from guessing. As it turned out Tate needed very little help. Once he forgot he was not supposed to read the word out loud and had to choose again. A couple of times he gave verbal clues. I kept reminding him that no words were allowed but he got a little confused when everyone was yelling out answers and asking him, “Is it a ____?” So, wanting to please them, he would forget he was not supposed to talk and answer them in words. I thought the funniest part of the evening was when Tate was to illustrate the word, “coal.” In addition to drawing a blob that no one could identify, he said, “It’s what Santa Claus gives to kids who have been naughty.” Of course that was in violation of the rules but we all cracked up. No one really cared the rules had been violated. They understood. They understood that Tate was a kid who not too many years ago could not define words. He would have been unable to give a clue verbally at all. He could not have defined the word “coal” or much of any other word. And that night he was doing that and so much more.

When Tate was small we invested every dollar we could scrape together into therapies to teach him. We put all our eggs into one basket. We used ABA therapy and did as many hours of discrete trial as we could fit into a day. If you do not know what ABA or discrete trial is, click here.

At age three Tate did not understand that an item could actually have more than one name. For example, He called cows, “cows.” When we tried to teach him that cows are also called “animals” he had a lot of trouble reconciling that in his mind. When we finally convinced him a cow is an animal, he would no longer call it a cow. We worked on a discrete trial program for a long time called “categories.” Another program was to teach synonyms as he was having so much trouble with the idea. I tried to convince him that sticks and twigs were the same. Bugs and Insects were also the same. It was so hard for him to accept. When Tate had mastered those simple programs we moved onto much harder things. Word definition had never gone very well. It required a lot more language than Tate had mastered for a long time. Hearing Tate describe “coal” I was reminded of all the hard work and how well it has paid off.

Another highlight of the evening for me was watching Tate interact with those around him. He watched the rest of us laughing and bragging about our successes during the evening. He heard us all teasing each other, claiming the other teams must be cheating when they pulled ahead. He wanted in on the fun. Tate began to “trash talk” and was very good at it. He looked to a friend next to him who was playing on another team and said, “I wonder what it will feel like when I win?” We laughed twice as hard at that comment since it had come from Tate. As it turned out, Tate did not have to wonder long. His team did win. He’s a winner in more ways than one.

Note: In the picture above, Tate was drawing a king. We all knew as soon as we saw the crown. I was very impressed. Tate's sister snapped a photo of the television screen as she was also quite impressed at how well he was doing. 

If you enjoyed this post you might like to read another. Executive Function and Al Capone