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

There is no ham in hamburgers

I have been a mom for 27 years. I was 25 years old when I became a mom for the first time. As almost every mom will tell you there is no describing the overwhelming love a mother feels for her child. You really cannot know that feeling until you become a parent. As a young mom of a typically developing child, and then two, and then three, and then four.... I got to do a lot of amazing things with my kids. I enjoyed my time with them very much. When my sixth child was born I was not quite so young anymore. I had children at home, aged 13, 11, 8, 6, and 3. I'd had enough experience to know what I was doing. I had taught a lot of kids to walk, talk, use a spoon, brush their teeth, dress themselves and all the other things moms teach their kids to do. I really knew what I was doing. Except this time I did not. This time my baby did not learn the things I tried to teach him. This time was different. And around age two and a half the things he had been able to learn he seemed to forget. And that's when I knew. That is when I knew that something was really not right. And I first heard the word "autism." Autism has robbed my son Tate of a lot of things but autism has not robbed us of everything. Autism has never been able to limit our love. Autism has not taken our sense of humor. And in spite of autism, we have a really good life. Tate, not autism, is celebrated every day. Tate makes my heart smile. He does that in a lot of ways. Sometimes even the obsessions, struggles and misunderstandings are an endearing part of our lives. Tate is different than his siblings but different is not always bad or wrong. Different is just different. 

I have tried to illustrate some of the ways Tate thinks differently. 

Tate, being a very literal thinker is often struggling to understand figurative language. Words with more than one meaning are also often misunderstood. Here are just a few of the things I've had to try and reconcile for Tate recently. 

If Tate believes someone is upset with him he becomes anxious. It is not often I lose my patience with Tate. I know it will take him longer to get past a conflict than it will me and usually if I have to correct him I do it with a smile on my face so he understands he is not "in trouble." Sometimes though I slip. The following illustrates the results if I lose my cool.

...

Nine months of each year for the past three, Tate insists on wearing a hoodie. He has several, his favorite have a Kansas University Jayhawk on them. He becomes upset if he is asked to take the hoodies off but sometimes I must insist. His hoodies are as important to Tate as a blanket or pacifier can become to a baby. A hoodie seem to be his comfort item. 

Tate, like many people his age would rather not help with chores. Sometimes he can be coaxed into helping out but most of the time he is ready with an excuse. The exception is laundry. A few months ago he discovered he likes to do laundry and he takes his job very seriously. 

Tate's little sister drives him crazy but he is also very protective of her. He can yell at her himself but he sure does not want anyone else saying a cross word to her. Sydney was born in Russia and we adopted her before her first birthday. Tate tells me often that her Russian heritage should exempt her from behaving. It makes perfect sense to him.

If you liked this post, you might also like Tate's Texts.

I dash dreams now to avoid heartache later.

Most of the time I don’t think about the things Sydney cannot do. Most of the time I am just thankful for the things she can do. As a matter of fact, I do not think Sydney regularly thinks about the things she cannot do either, but is also content about the things she is good at. But sometimes….. Sometimes it becomes quite evident that she is unable to do things her peers easily master and she sees it. She sees it and it hurts her. When it happens there is often nothing I can do or say to make it less painful.  

There was a time when Sydney was in preschool, struggling to learn colors and simple skills her peers had long since mastered. Back then I wondered if she would ever read or be able to do simple math. She has come so very far. I try to be grateful for what she is achieving and not disappointed about what she is not. It’s a fine line I walk though because I do not want to stop challenging Sydney and become complacent. I have to remember she would NOT have learned to read or do simple math had I stopped trying to teach her. And so I try to challenge her without making the goals loftier than she can achieve.

Last year Sydney was in the fourth grade. Fourth graders in our district spend a lot of their music class learning to play the recorder. I am sure using the recorder is beneficial for lots of reasons. The students learned how to read music. They were taught about rhythm and how to count measures. It was a lot of fun for them. The first song they tackled was Hot Cross Buns. And they went on to learn many more. And then there was a concert. They played some of the songs they knew that night. When I say “they” and “them” above I mean all the fourth graders…. EXCEPT Sydney. Sydney had finally mastered the first song Hot Cross Buns in time for the concert but that was all. She just held her recorder and pretended to play the rest of them while her classmates whistled away. And she knew. She knew she was the only one on the stage holding a recorder who could not play the songs. No matter how hard she had tried and how much she wanted it she was unable to memorize the fingerings or the order of the notes. Part of the time, even throughout the song she did know, she was not able to keep the holes completely covered well with her fingers so the recorder made shrill squeaking noises instead of the tones it should. During the time leading up to the concert Sydney would often tell me her classmates asked her why she could not yet play the easy song. They did not understand why the things that came easy to them did not come easy to Sydney. I think it is all about the thing called executive function I've mentioned before. Playing music on an instrument takes planning and reading ahead and remembering what comes next. Those things do not come easy to Sydney. How can I explain that to her classmates? How can I ask them to stop asking Sydney, "Why can't you do this? Everyone else in the class can do it." 

The whole experience with the recorder was pretty humbling for us and I was so glad it was over. But I knew it was not REALLY over. Because the recorder is used to prepare the students for band. In the fifth grade, the kids decide if they want to be in the band and what instrument they will play. This summer I touched on the subject several times. I casually mentioned to Sydney that SOME fifth graders would be in band and some would not. I told her she would be one of the ones who were not in the band. I did not make it sound like she would be missing out on anything great, just doing something different. She did not argue. Then school started. The music teacher began talking about instruments and introducing the students to them and allowing them to touch them. And the excited fifth graders all began chattering about band and instruments and Sydney came home telling me of their excitement. I reminded her she would not be taking band class. I gently reminded her how hard it was for her to learn just one song on the recorder. She remembered. But oh how she wants to try again. This time with a much harder instrument. We’ve had several conversations about it together each time her conceding seeming to understand she will be doing something “different” than band. On the way home from school today she once again got into the car chattering about how great it would be to be in the band. She announced. “I know just what trumpet I want to play in the band! It is the flute!” Of course I smiled at her gaffe but was saddened by her unrealistic expectation. Her sisters immediately jumped in with things like, “Band isn’t that fun!” and “Singing in the choir at school is more fun than band.”

Even if I pacified Sydney by allowing her to join the band and I bought her a flute or a trumpet or even a drum, it would only be a short-lived happiness. As the other kids picked up the notes and fingerings and learned what the band teacher wanted from them, she would fall behind. The other kids would notice. Sydney would notice. So, gently telling her that band is not for her may be painful now it is much easier on everyone involved than setting her up for failure. That is what I have to keep telling myself. I dash dreams now to avoid heartache later. 

Note: Sydney's disability is Fetal Alcohol Syndrome. For more about that click here: The F in FAS does not stand for Fun