My Child Has Autism, Now What?

My friend and colleague, Dr. Susan Larson Kidd, published her first book recently!  My Child Has Autism, Now What?  Ten Steps to Get You Started.  At the clinic, where I work, we were all happy for her and so we hosted a book signing event at a local art museum.  I had the opportunity to introduce Dr. Kidd and this meant thinking about her, her work, and our relationship.  I will say a few words on these three topics here--because all of these things are important to me.  

Let me tell you about Dr. Susan Larson Kidd.  First, don't you think she has a great last name?  I know that the kids she works with love calling her Doctor Kidd.  She is an Educational and Behavioral Consultant who works in private practice and lectures around the nation.  She is good at practically everything that I find difficult.  Like singing.  That is something that I admire that she is good at and I am not.  In addition, she organizes and plans and documents and remembers the details like what various parts of the brain are called and the names of various intervention strategies and who the important researchers are and what they have contributed to the field of autism. So, when she writes a guide book for parents of newly diagnosed children, you can be sure that it will be practical, organized, well-researched and useful. It is a shame you can't hear her sing in this book, though.

We do have some things in common, Dr. Kidd and I.  We both find great pleasure in spending time with children who have autism. We share a passion for educating parents.  We both believe in the capacity of parents to learn and grow well into the fascinating journey that they begin the moment they start to parent a child with autism.  We sincerely believe that with good information and the acquisition of some new parenting skills, it is realistic and possible for parents of children with autism to create happy family lives.  The book Dr. Kidd has written reflects one of our shared goals in life which is to guide children with autism and their families toward happy lives.

 I will take this opportunity to reflect on my friendship with Dr. Susan Larson Kidd as well and give you an insider scoop, because we have a meet every week at least once if we possibly can kind of friendship. Every way that she and I are different and each way that we are the same contributes to the richness of our friendship.  We cover more territory in life through our friendship because of our differences and yet it always feels like we are moving in the same direction.  Professionally, in the same way that parents of children with autism must seek out support, in order to parent their best, those of us who work in this field also need support.  We need to be able to talk about our successes, which might seem insignificant to someone unfamiliar with autism.  We need to be able to talk about our dreams for children and get a second opinion on whether these dreams are too small, too grandiose or reasonably ambitious. We need someone safe with whom we can share failures and insecurities. We need someone to remind us of things we used to know but have forgotten.  We need someone to motivate us to keep seeking out new knowledge even though learning about autism can feel like trying to drink out of a fire hose.   Susan is all these things for me and more.  I hope you will buy and read her book and share a little in the joy of knowing Dr. Susan Larson Kidd.

Lexi, who is pictured in the book, is signing books too.

All Blue, Only Blue, No Other Color Will Do

We have a new Smart Board at the clinic, and I am starting to use it in therapy.  Basically, it is like having a very large touch screen computer monitor.  I have been using it with some children as though it were a large white paper and we have been coloring and drawing on it. There are many cool ways one can draw and create art on a Smart Board but trying to create a structure that allows a child with autism to draw in a socially interactive way can be a challenge.  This post is about one of the autism challenges that I have encountered as I started using a Smart Board.

For some children, the activity of coloring is like a cognitive pothole where the child becomes stuck in a single colored neurological loop.  The child becomes consumed with the desire to use one and only one color.  If I was not trying to hold a conversation with the child, I am sure I could be cool with the one color thing--at least for a while.  I am not cool with it, though, because there is very little one can or wants to say while trying to cover a large white surface with a single color.

Three children that I saw this week insisted on the color with one and only one color thing and wanted to fill the entire white surface of the Smart Board with one color.  I used a shapes program on the Smart Board and filled much of the board with circles. The child was then able to pick a color and fill these circles with that color by tapping on the circle.  Two of the three children would only choose blue.  The third would start with one color and then she stuck with that color, period, end of discussion.  I know the drill with her because we have done some coloring on paper and she does the same thing. When I tried to talk these children into using other colors, I got ignored--which served me right because talking is almost never useful in this kind of situation.  If I pushed the issue by taking a turn and coloring with a different color on the board, the child got upset and tried frantically to repair the damage that I had done.  If I pushed too long, the child lost interest in the Smart Board activity suddenly, completely and absolutely.  So.... what to do?

First, I know that some of you have some good strategies and now, as I think about it, a lot more strategies are coming to mind. Feel free to comment below with what you would have done or have done in a similar situation. I missed several of the likely to succeed strategies.

Child 1.  I gave up on talking and took a turn, thus ruining her art by adding a second color.  She moved away from the Smart Board and requested that we go to a different room to play. I took her to a different room when she said We gotta get outta here, Tahirih!

Child 2.  This child filled every circle with blue.  I took a turn and filled a circle with red.  He protested angrily and I decided to take an indirect approach to showing him all the color opportunities on a Smart Board.  I offered Child 2 a different activity which I set up across the room.   While Child 2 was busy putting together a letter puzzle on the other side of the room with his mom, I had mom call out letters across the room to me.  When she called out a letter, I wrote the letter on the Smart Board.  Child 2 likes letters and he started looking up to see me write the letter.  I changed colors often and called back what I was doing. Red B. I said while writing a B in red.  Blue T.  Purple X.  The child began to call out letters with prompting from mom.  I wrote the letter in different colors.  I hope we will be able to do a letter writing game on the Smart Board next time he comes so that we will not be stuck with blue, blue, nothing but blue every time he draws on the Smart Board.  Once we have the colored letter game down, we will try to play the colored circle game the same way--with lots of different colors.

Child 3.  We started by making circles and Child 3 helped me and then I suggested that we paint the circles.  he agreed but then "painted" them with blue, blue, and more blue adding circles and then painting them until the whole white board was covered in blue. I sometimes changed the color of a circle quickly but my co-artist quickly changed circles back to blue and after a few times he asked me politely to leave the circles alone.  The words were polite but the voice sounded a note of panic. I became aware that every time I changed the color of a circle, this child was learning that asking politely does not work and he was moving closer to having a melt down. I stopped changing the colors. I then talked about how "boring" all blue circles were and he told me he liked boring.  Never argue with a child who has autism. You can disagree but there is no point engaging in an argument. I know this rule and I didn't pursue this discussion because it was likely to become an argument.  We talked about it being my turn to choose a color and that it would be fair if I got to choose my own favorite color.  He told me that I could take a turn but my favorite color was blue. I soon realized that we were not making progress even though this little guy is very verbal and wants to be cooperative.

We left the Smart Board to go and spin tops on the other side of the room.  But before we started, I quickly put a bunch of square shapes up on the Smart Board.  My plan was to fill these with color. The first top we wound up for spinning was blue.  I suggested that my friend go across the room and paint one square on the Smart Board blue.  He did this, because he really does try to do things that I ask him to do--as long as I am not asking him to do something that is terribly wrong. He came back as I wound up the top and we watched the blue top spin.  The second top we wound up to spin was orange and purple.  I went over to the Smart Board and colored a square with orange and purple.  Then I went back to where my co-spinner was waiting and let the orange and purple top spin.  We watched the top spin across the floor. The third top that I pulled out was green.  I guess you better color the next square green  I said.  Why?  he asked.  Well, because this top is green.  I answered.  I don't think that Child 3 understood my logic exactly but with a furrowed brow, he did it anyway.  We continued this way until all the squares were colored and he did grasp the pattern of making squares on the board match the color of the top.  All the different colors look good to me.  I said, as we finished spinning all the tops.  Not boring.  My friend did not say a word on this topic.  All I can claim at this point is that this one time, Child 3 used a variety of colors even though he typically tries to use all blue, not just on the Smart Board but where ever possible.  He used different colors without signs of anxiety or sounds of protest.  Maybe that was progress.

But maybe he is at home right now reflecting on how much nicer those squares would have looked if he had done them all in blue.

Places to Go--A Visual Schedule for the Car

Visual Schedules are pretty close to magic when it comes to helping children understand what will happen and feel calmer through the varied activities of a day.  I think of a visual schedules as the first line strategy to use when we are discussing Positive Behavioral Supports (positive ways to help children behave appropriately).  I try to imagine how anxious I would be if I had no idea what was going to happen, hour-by-hour each day and it is not hard to see why a visual schedule is helpful.  Having a language disorder is not just being unable to understand what others say (which is one reason we use a visual schedule) and not being able to ask others about things that don't know (which is another reason we use a visual schedule)--a language disorder means you don't have the internal language inside your head that most of us use to talk ourselves though the day.  For example, if I am tired as I shop for things I need on a Saturday afternoon, I can converse with myself, saying something like

Well, I need gas, and then I have to get a few groceries because I don't have time later in the week.  We need fruit.  The fruit is all gone.  I wonder if they still have papayas--those were good.  Ron will want bananas. After I finish shopping, I will stop at Starbucks and get cup of coffee.  I want to try that new Cherry Mocha.

Kids with a significant communication disorder, (all kids with autism), can not pep talk themselves through a seemingly endless Saturday of shopping--nor through the many other sequential events of life. Making Visual Schedules for kids with autism is one of the most basic language support you can offer.

A Speech Pathologist named Linda Hodgdon is really The Guru of Visual Supports and I want to encourage the parents and teacher of every child with autism to sign up for her newsletters online. If you stop reading right now and go do that, I will be delighted.  But, I have offered a nice example of a visual support below and I hope some of you will find this visual support useful.

My colleague, Tamara Pogin and I try to have a Visual Support of the month all made up and ready to give out in our therapy room as a way to encourage families to try new Visual Supports.  The one we are giving out right now is a Visual Schedule for the car that we call Paces To Go.


Why use a visual schedule?

1. Because it will help your child pay attention as you communicate.
2. Because it will help your child understand verbal information.
3. Because it will help your child stay calm in situations that would otherwise be confusing and upsetting.

Here is what you need:

• Laminated car outline with a strip of Velcro on which you can place one or more pictures.
• Laminated photo's, picture symbols, or even homemade drawings that represent different locations in the community. Put the other side of the velcro on these pictures.
• Put your car/schedule up in your car somewhere and keep all your pictures in an envelope in the glove compartment so you have them when you need them.
• Put some small, blank, Post-It notes in so you can draw a location if you go somewhere different and don't have a picture.

Here is a short video clip showing how to make and use this basic visual schedule:



With children who do not yet use many words or who have never used a visual schedule before, start with photographs rather than line drawings representing places and start with just one picture at a time.



For children who are using at least 100 words and can combine words, you may want to use this visual schedule to help your child learn how to plan with language and remember with language, and tell stories about real things that happened while out cruising around in the car.  There are many language skills that you can teach by using a visual support of this kind.  After you make this visual support, take it with you to visit your child's Speech Language Pathologist and ask him or her how you could use this tool to help your child achieve learning objectives that are written on the Individual Education Plan or Treatment Plan. 



Where to get pictures?
There are many ways to get pictures to use for Visual Supports.  We use a software program called Boardmaker.  We also use a digital camera and take many photos.  We copy photo's from Google Image, just doing an Image Search for any photo that we want.  This option is nice because many places your family goes will actually have photos online.  Schelra is another source that has some very nice picture symbols and for some situations, these would be excellent.

Follow Up to Whole Brain Teaching

I got such passionate responses (both negative and positive) from readers of this blog and especially  my colleagues here at the Scottish Rite Clinic that I think if might be interesting to continue the discussion. I thought I would link a video of the system being used in a Kindergarten class where there is a slightly more natural interaction style and it is easier to imagine how a real class would respond to this style.

My feeling, however, is that some teachers and students would love this system and some would hate it and not very many would be neutral about it. Another important issue, of course, is whether it would work with any particular child with ASD with appropriate modifications. Would it be better or worse than other teaching styles?

Power Teaching

Here is a video demonstration of a way of teaching which could be modified somewhat and work with children who have ASD.  I use the strategies of movement, emotion and Key Phrases already.  I think the speed might be hard on some kids with ASD but there is virtually no time for a child to lose attention.  I think I will give this idea a bit of a try.  Watch this video and let me know your thoughts on this.

Gobo, Disco, and Blue Light Specials But No Fiddles

Today, at our Stage Play Acting Classes, I forgot to bring Fiddles. Our young actors are used to having a selection of stretchy snakes, squishy balls, and little quiet toys to play with while being in the audience role. Turned out we did not need Fiddles anyway because we had a visiting Stage Lighting Designer, Kenneth Pogin who put on a light show for the kids that rivaled Forth of July Fireworks, and was more fun for some kids because he did not make loud sounds. The actors pretended to go to sleep to blue lighting, wake up to red lighting and danced to flashing lights. Gobo is not only fun to say, Gobo lights that look like anything from bubbles to prison bars were a huge hit with our actors. They Ooood and Awwwd to every new Gobo Light effect. Usually, however, we have Fiddles, a weighted lap blanket and the option of taking a walk available at all times. This sensory option keeps a lot of children sitting happily when they should be sitting. I really need to remember to bring those things for the next class since we don't get a Lights Guy next week.

One thing that was interesting at this class was that the kids were careful about the equipment. I think this was true for at least three reasons. The first reason is that we followed the routine as always. Even though there was some new stuff on stage, we followed the visual schedule and the actors knew where they were supposed to be. Secondly, we addressed their curiosity pretty quickly by demonstrating the lighting equipment during theater vocabulary section of the class (third activity) so the kids had a chance to see what the lights were for after a few minutes of seeing them. Thirdly, we tried to help them avoid tripping over the cables and over the lights by giving the actors a specific place to be away from the lights. For example, we did our acting scenes from center stage and avoided downstage where the lights were. We also had the kids come to the side, where there were no cables, and give a teacher a high five before going onstage in an effort to keep them from walking between the lights or tripping on the cables.

It was also interesting that none of the actors voiced concerns about the brightness of the lights. The squinted and blinked but did not say a word. We did let one child come in early and get a sample of the lights moving and flashing before class started so he would know it was coming and decide if he liked it or not. He gave it a big thumbs up. Most the kids experienced stage lights for the first time without preparation.

*Note about Fiddles and other sensory tools:

Here is a great (as in reasonably priced and cute) source for weighted clothes, lap toys, and even fiddles. Therapeutic Threads

Paper Doll Potty Training

Paper doll potty training is an idea for helping children use public bathrooms. Many children with autism refuse to use public bathrooms. Some will only use bathrooms at home, not at school or even at grandma's house. There can be a variety of reasons for this but one possibility is that it just seems to scary or strange to use a different bathrooms. You can use a paper doll image of your child to help him or her get used to the idea of going on a different toilet.



I often create a paper doll with a child's face on the doll in order to help the child think about doing new things. In this case, make a paper doll of your child and laminate it (or put clear contact paper on the doll). You don't have to be graphic but make this particular doll without clothing--just cut the doll shape out of a vanilla colored manila folder if your child is pale like me or a darker color if your child has darker skin. Glue on an appropriate sized picture of your child's face. Cut out pants and shirt and shoes and laminate these. Attach to the paper doll with velcro. Now you have a paper doll version of your child to use for paper doll demonstrations.

Take this doll with you whenever you and your child go to public places and include the doll in your activities as though he or she were a real person. Look at the doll when you talk. Pretend the doll talks back to you. Andydoll is hungry. Here Andydoll, here is a French Fry. At some point, using your most dramatic voice say something like Uh Oh! Andydoll has to go potty. We better take him. He really needs to go! We will be right back. Don't eat all the French Fries!

Now, when you take Andydoll to the bathroom, assuming your child will go with you, do everything with Andydoll that you would do if your child had to use the toilet. Take Andydolls pants off. Stand him up or sit him down--whatever you want your child to learn to do. When Andydoll is done, help him wash his hands and don't just praise Andydoll, talk about how much better he feels. Wow! Andydoll feels much better now. You could even reward Andydoll, but wait to do this until after you have modeled Andydoll going potty in a few different places. Your child needs time to think about this possibility more than he or she needs a bribe. If you do use a reward, make sure that you don't give the reward to Andytherealguy unless Andytherealguy also uses the public toilet. Andydoll will share the new helicopter with you when you go potty in a different place. Pretty soon, you will be brave and go potty in a different toilet. The new helicopter is just for being brave.


It only makes sense to model this way if your child recognizes pictures of him or herself. Use a language level appropriate to your child's ability to comprehend what you are saying.

Reset the Button

After trying several different ways to inspire some cooperation in a child who resisted playing the first few games I brought out, I finally hit upon a game that he loved. He and dad and I then played happily and productively for twenty minutes and the next game went well too. The child’s father, apparently having had a pretty hard day with his son earlier, commented that as a father he just had to hit the reset button more often.

It is relatively easy for me to hit the reset button that this dad was talking about, but I remember when it was not—back when I had only worked with a few children with autism. A parent is in a totally different situation than I am. For one thing, most the time the parent has only worked with one child who has autism--their own. There several reasons why it is easier for me to hit reset emotionally and try something new than it is for a parent. 1) I know a lot of games and strategies and figure that sooner or later something will work 2) I can almost always recall that I was ultimately successful with a child who was equally or more challenging than the one that I am with 3) I don’t take it personally when a child is uncooperative because children with autism all have difficulty with social interaction so I know it is about the autism 4) I only have each child for one hour and then the child leaves so I always see an end point no matter how hard a session gets. None of these things is true for the parent of a child with autism and parents feel the strain. None-the-less, to be successful parenting a child with ASD, a parent needs to know how to hit the reset button.

I mention the factors that make it easier for me, in part because parents can use these factors and others and make it easier on themselves when they need to hit the reset button. They can learn more games and strategies--giving themselves a bigger tool box and confidence. Parents can read about other kids with autism and know that others are equally challenging (or more challenging). They can increase their own patience by reading success stories. That is why I include so many stories on this blog so that parents see a success when it happens and anticipate success when it takes a long time. Parents can decide emphatically not to take their child's behavior personally and reset the button with that thought. Parents can set reasonable time limits for play and activities. Play for a half-an-hour or one hour and then stop and come back to it later after your reset button is naturally reset.

This idea of learning how to hit the reset button extends to children as well. I played with a little boy yesterday who was drumming with me. (Drumming game is demonstrated on this page.) I was following his lead and copying everything that he did. He enjoyed this so much that he sometimes fell over on the floor laughing and at one point, he took the drum sticks and starting hitting me with them! When I redirected him, he tried to follow my lead for a bit, drumming in the same way that I was, but suddenly, he jumped up and went to my window blinds and started rattling them, looking at me with a clear expectation that I would scold and stop him. He was overly excited but not angry or mischievous as he gazed at me expectantly. He did not know how to calm himself down so he went to rattle the blinds, which is a behavior I have seen many children do in order to communicate some need for adult intervention. In this case, he seemed to want me to reset his emotional state button. The excitement he felt was too extreme and did not feel good. I did not react to the blinds behavior since I didn't want it to become the way this little guy communicates with me but I distracted him and helped him move into a more calming activity. With my new and helpful phrase, I told myself we need to find some appropriate reset the button strategies for this little guy.

Back To School Support

Guest Post by Dr. Susan Larson Kidd

Although this is a very exciting time of year, it also causes anxiety levels to sky rocket. Kids on the spectrum especially have a difficult time going back to school after summer, going to a new school, going to school for the first time, or riding the school bus.
Here are some tips that we have found to be helpful to families for kids on the spectrum during back-to-school time:

Create a social story—use photos of the school, hallway, school bathroom, school playground, lunchroom, gym, classroom and teachers if possible. This will visually help the child to know what to expect in his/her school surroundings. For help with social stories, go to Carol Gray's website for ideas.

Visit the school a few times when it isn’t full of people. Take your child and walk the pathways he/she may use during the day. This is a good time to take the photos you need for your social story, and for your child to experience some of the sounds and smells of the environment a little bit at a time.

If the child is terrified of school, work at going to school little-by-little, step-by-step. For example: Get ready routine, walk to bus stop, ride the bus to school, get off the bus, find classroom, put belongings in cubby, enter classroom and greet teacher, etc. Make a visual checklist for the child and add one more small step each day. Also, ride the bus or ask an OT or teacher to do so to experience what your child will experience. It might be important to help your child cope with some of the sensory aspects of his or her bus ride if this is hard.

Even James Must Sleep

I recently promised a reader that I would write post about sleep strategies. There is a little irony in me writing this as I am a terrible sleeper myself, but one need not be good at something to teach about it, I guess. I have worked through this issue with many parents over the years so I will share what I can.

Overview

1. Sleep problems may require a medical solution rather than a communication solution (an alternative way of communicating with your child) or a behavioral solution (systematically training a new skill), so consult a doctor who is experienced with children who have autism if the following information is not enough. Don't jump straight to medication, though, without trying to teach your child how to sleep.


2. A communication solution often works because there is information about sleeping that your child does not have and can't learn in a typical way--that is by listening and watching. This information might include the following: that sleep is not dangerous, that parents are close by (including exactly where), that sleep is a routine that happens in a particular way every night, and that going to bed is not negotiable.

3. After this information has been successfully communicated, you need to make a commitment to teaching whatever bedtime routine you choose. Teaching the routine may take a few nights of dedicated and determined effort.

The Problem

Learning to sleep in a socially conventional manner requires a number of skills that are challenging for children on the autism spectrum. Sleep can be frightening or at least confusing for a child who can't ask and would not understand a verbal explanations for dreams, for the creaking sound that the furnace makes, the reason that baby brother cries and receives mom's attention at 2:00 pm, why grandpa gets up to use the bathroom every night but does not intend to stay up and so on. We typically tell and show a child how to sleep but your child may not understand what you say as these are complicated things to understand. Your child may not be persuaded by your logic. Compounding the social/communication challenge, there may be sensory or neurological differences that make sleeping even more scary or confusing. You may need to help your child find a way to cope with these differences.

Solutions

Rather common suggestions to counter some of the inherent scariness of sleep, include leaving a night light on, providing white noise to cover up other noises, putting a weighted blanket on your child so that he or she is able to feel his or her body more clearly and know where he or she is in space. For a child who sees toys and gets up to play, a goodnight blanket over the toys might help. For a child who stays up when he goes to the bathroom, a piece of blue painter's tape from the bed to the toilet can help clarify the route he or she is suppose to take in two directions. For a child who wants to visit with mom at night, a talking button that has a picture of mom's face on it and her voice recorded saying I love you. Go to sleep. For a child who loves Thomas the Train more than anything, a story that involves trains might do the trick--Even James the Train must sleep at night, and you must sleep like James!

The most common helpful strategy of all is to create a really good bedtime routine. Helping your child learn to calm and relax his or her own body and mind while getting ready for bed often requires a bedtime routine that has consistent sensory components. Create a bedtime routine that involves all the senses and occurs in the same order and time frame every night. Example:

1. Warm, fragrant herb tea with honey (stimulating the sensory systems of taste & smell. Also drinking something that is only consumed before bed is a clear beginning to a bedtime routine)
2. Brush Teeth (taste stimulation and also important after honey)
3. Kiss and hug family members and say goodnight (visual, auditory, proprioceptive stimulation)
4. Bedtime song, story, prayer or all three (auditory input and can be unique to bedtime if the song, story or prayer is only said at that time)
5. Back rub (tactile, proprioceptive stimulation and calming)
6. Goodnight to the parent or adult who tucks your child in (clear ending to the bedtime routine)

More Do's and Do Not's

Do Not: Lay beside your child after the last goodnight if you don't want to sleep with your child for the next several years. I must confess that I slept next to my kids for years. I didn't mind that much and looking back, it is a very sweet memory. But, I hear more frustrated moms tell me that they are upset because a child does not let me leave the bed and so I must mention that you can leave the bed if you want to and if you really want your child to learn to sleep without you beside him or her, you need to leave the bed at the same time in the routine each night. This seems to be more a mom trap than a dad trap as I have yet to meet a dad who is willing to stay after he decides the bedtime routine is over. If need be, let dad take over the bedtime routine for a while to get through this hurdle.

Do Not: Let bedtime routine grow longer or vary once the steps are set, even for illnesses, vacations, weekends. It can be helpful to vary the person who puts your child to bed though (if this is an option) because this variation might happen from time to time and you want your child able to sleep when this happens. Also, very lovely and loving parents have been known to get crabby and need a break.

Do: Use visuals supports (pictures). Make a visual schedule (hand drawn or with photographs or with pictures pulled from online) and show your child the bedtime routine each night for a while, crossing off the steps as you do each part of the routine. If your child seems fearful at night, write a story and draw pictures or take a photographs so that you can show your child where you will be and where other family members will be while he or she sleeps. Explain anything else that you suspect is frightening to your child with pictures. Use simple and calming language in this story. E.g. You are safe in this house. Daddy locks the doors. Not: Bad guys can't get in because I lock the doors at night and I would punch anybody in the face if he did come in anyway.

Do: Think about how you can help your child become progressively more relaxed and calm over the course of the evening. Provide meals and baths and quiet calming bedtime play early enough that these will not spill over into the time set aside for a bedtime routine. While horseplay with dad or siblings is wonderful and to be encouraged, don't do this right before bedtime if it seems to get your child too wound up. For some children, bath time is quite energizing and should happen two hours before bedtime or in the morning. Turn off the T.V. and computer at a set time each night. Call this Family Time, or Quiet Time or something neutral and don't relate turning off these machines to bedtime. Some children do fall asleep watching a video and this is fine if this is part of your routine and works to calm your child. But children can become very upset about having to stop a preferred activity in order to go to bed and it is better not to make bedtime seem like a punishment by making it right after the computer is shut off.

Do: Schedule 1/2 hour for bedtime routines and make the routine begin and end at the same time each night. Even if you have a shorter bedtime routine, schedule this much time so that you won't expect to be done faster. Someone once said, Disappointment is the fruit of unrealistic expectations. If you expect to pull bedtime off in ten minutes and your child is not able to calm and prepare for sleep that quickly, you will become stressed and compound the difficulty with your frustration.
It Can Be Rocket Science

You might need help to get a good bedtime established but good sleep habits are a lifetime gift and worth the effort both for your sanity and your child's well-being. The behavioral part to teaching bedtime routines include not inadvertently rewarding your child for tantrums or other undesirable behavior. If you have two adults involved in problem solving a habitually difficult bedtime, one should watch carefully while the other carries out the bedtime routine. The watcher's job is to see if the other is actually rewarding undesirable behavior. Even really capable parents get blinded by the emotional dynamics and don't realize that, for example, that last hug a child begged for and got was the wrong move when the last goodnight had already been said. Parents are tired at night, as well, and cave for short term relief even though they know it is not the best thing to do. A little support can help a parent overcome bedtime difficulties. Sometimes, a parent will tell me all about bedtime-hell one week and have the solution mostly accomplished before we meet again and before I have given any suggestions at all. I just needed to get a little more strength of will is the most common explanation for this. No parent is really accountable to me but if they want to use me for a little borrowed courage and determination, I am happy to provide this. Certainly there is someone out there ready to help you if you look around. Don't hesitate to consult a professional if you need help or borrow the wisdom and courage from another parent of a child with ASD who has mastered the Bedtime Routine.

Please read Dr. Kidd's comment below for more great sleep strategies and information.

Link to Blog on Sleep Program for children with ASD
Link to a night light that might really be helpful for a child with ASD



Note: Photo is from flickr

Invading a Child's Home

I went to a gathering in a family home yesterday and the little boy who lived there was quite overwhelmed to have strangers in his home. He was even less happy when his mother turned the television off. I have no idea if this little fellow had autism, there were a lot of people there and this little boy was not interested in chatting with me. Still watching him and his mother trying to cope with his anxiety was instructive to me and this situation is certainly one that parents mention as difficult often at the clinic where I work. I am on vacation right now, so you'd think I could just let this go, mentally--but I guess my mind could not resist--I woke up dreaming about setting up a plan to help the unhappy little guy I met last night:

People are Invading My Home Plan
(Only don't call it that because the point is to re-frame and support your child)

First of all, like all difficult moments, it is better if one has a plan predetermined so I would suggest making a plan with your child before people come to visit your home. If caught unprepared, however, one more step will be needed (see below). In this case, the plan is for a verbal child who can read--the plan would need to include pictures (hand drawn, line drawings would be fine as the pictures are just to remind your child of the various steps.)

Sit down with your child and tell him or her that people will be coming to visit. If you know the time and your child is a clock watcher, add the time of arrival, as details like this make a plan work better. Most of us prefer to know the time that visitors will be arriving and leaving, so it makes sense that your child should want this information. Tell your child that you know it is hard for him or her when people visit so you are going to make a plan so that it will be easier. The exact items on your plan will need to be individualized for your child--if he or she can greet people when they come, put greeting people on the plan. If greeting people would be too hard, tell your child that he or she can wait in another room until everyone has arrived. In other words, don't take these steps literally, write steps that will represent a reasonable expectation for your child--and don't worry about what your guests will think about all this--they are visiting your home after all. Write your plan down in list form. Give it a title.

Plan for Being Happy When People Come to Visit

1. We are going to have people over, so Mom is going to make treats. You can help and you can choose if mommy makes cake or cookies.
2. Mom is going to turn the TV off at 7:00, before people come over. People will come at about 7:30. You can help mom get ready by putting treats and juice out on the table and you can eat one treat before anyone comes to our house. We will save the rest for our guests, but you can eat one more when all the people are eating.
3. When people come to the door, Mom will say hello to each person. You can say hi to anyone who says hi to you. Some people might want to hug you or touch your shoulder or ruffle your hair. This is OK.
4. Mom will invite people to sit down. You can sit in the blue chair and mom will come sit next to you after everyone sits down. If someone else sits in the blue chair, mom will ask that person to move to a different chair.
5. We are going to put a quiet toy next to your blue chair. You can choose a quiet toy. Do you want your stretchy snakes, your Blues Clues book, or your notebook for drawing? Playing with this toy will help you if you get nervous around all the people. It is OK for you to go in your room if you don't want to be around people. You can come back out when you are ready to visit again.
   
6. You can talk to our visitors. If you want to talk to Aunt Amy, remember to ask her about her dog, Babe. Just say, How is Babe doing? She likes to talk about her dog. Grandpa likes to talk about when he was a boy. Ask him, Grandpa, what did you do when you were eight years old?
   
7. You can help mom give everybody treats. Tell people that you helped mom make the treats.
8. People will leave at about 9:00 pm. Some might leave later, but not too much later.
   
9. After everyone leaves, we will watch a movie. Mom will watch it with you and she will be so proud of you because you tried to be a good host.

If you have not made a plan before visitors come and your child gets upset when they come over, take time to make a plan. I would say something like, It is hard for you when people come over. It makes you upset when mom turns off the TV because the TV helps you stay calm when we have visitors. Come in the kitchen with me and mom will make a plan with you so you can feel OK with the TV off. Then, excuse yourself for a moment and go and write a list that tells your child what he or she can do that will help. Write when the TV will come back on.

Don't ask your child if he or she wants to do something that needs to be done, tell don't ask. When parents are worried that a child might get upset, parents tend to use the more polite form of giving a verbal direction. For example, a parent might say, Are you ready to go be with our visitors now? When the parent means, It is time to go be with our visitors now. Give choices, though, when you can. For example, you could say, We will go in to visit with our visitors, do you want to bring Fido (the dog) with us or leave him in the kitchen?

Write specific things on your plan like where to sit, what to say, what to do exactly and when because it is easier for your child if you mention specific things rather than general things like Be polite, be friendly, be good. Write what will happen after everyone leaves. Again, a plan can be made with line drawings for a child who does not yet read. A plan could be as simple as a picture form of:

1. Bake cookies
2. Turn TV off
3. Say Hi to people
4. Sit in blue chair
5. Read Blues Clues book
6. Say Goodbye
7. Watch Cars Movie
   

The point here is that many children need preparation when they have visitors. Explicit written directions are enough to help many children. For other children there will be more steps. The process of learning how to be hospitable is hard for many children and not just those with autism. We expect that children will just learn the necessary emotional, social, and practical skills of hospitality by watching us, but for some children this is like learning algebra by watching someone else solve an algebra problem. It is just too complex and the child needs more support in learning. Other things that can be helpful include role playing and real life practice sessions. In real life practice session, you invite a few friends specifically for the purpose of helping your child learn to be a Host or Hostess. A short and highly planned visit can help your child learn the parts of hospitality and short visits can make it easier for you to teach one or two specific skills at a time.

I believe that all children can learn to enjoy new social situations including friends and strangers coming to visit, family gatherings, religious gatherings, grocery stores trips and sit down restaurants. Parents need to know that no matter how challenging these situations are now, an explicit plan for learning to participate and enjoy new situations can be created.

The Magic of Duration Charts

A Duration Chart is a way to let your child see how long he or she will be doing something he or she does not like doing and showing your child the reward that will be offered at the end after doing this undesirable task. See the train chart below. The Duration Chart may also be used, as in the illustration to the left, to warn your child that he or she will not be allowed to keep doing a favorite activity forever. It lets your child know that you will decide when the activity will end. It is a strategy for wrestling back control in a gentle, non-upsetting way. The Duration Chart above would be used to help a child stop computer play when you request that he or she stop. Like all visual supports, you will need to show your child how this works several times before he or she will understand it.

This is how it works. The parent draws numbered squares in a row—three or five or however many the parent thinks makes sense and in the last square puts a picture or words that tell the child what will happen. This is a Duration Chart and each square does not symbolize a discrete turn or a set amount of time but rather the parent crosses out one numbered square at a time as fast or as slow as the parent feels is appropriate. Doing it this way is very useful!

Choosing the length of time for each interval of the duration, gives the parent a lot of room for using good judgment. Suppose your child never stays at the dinner table but instead, runs around the room and zooms in to take a bite of food from time to time. When the Duration Chart is first introduced, with the aim of helping your child to sit for dinnertime, you might want to cross off the numbers very quickly and then provide the reward pictured in the last square, and send him or her off to run around as usual. That is it for that night. Gradually, over many dinners, you will extend the time that you take to cross off the numbers. Your child will be waiting now for you to cross off the numbers before flying away. Gradually, your child will stay for longer and longer until he or she stays for the whole dinner. If, on a particular day, your child is not having an easy time sitting (perhaps there is a different person at the dinner table or a food that your child does not like to smell or just a hard day for no discernible reason) then you cross off those numbers faster again and don’t require that your child stay for the whole meal. The child can be the one to cross off the numbers but you choose when he or she does it. The duration of time that this chart represents is up to the parent, not the child (don’t give that away!) and the power of the method is in the parents sense of how long is the right amount of time for each interval on the chart-the reasonable amount of time from the child's perspective but from the child's perspective, clearly staying in control of the Chart.

Now, what is interesting is that for many children, the idea of a Duration Chart can be taught very quickly and the child begins to use this visual support to stay calm while doing activities that were always upsetting before. It is like magic.

More Tips: 1) Use Charts that you draw with paper and pen rather than computer generated charts like I have shown you here. It works just as well for most children and it is fast enough that you will do it. 2) Teach easier things before harder things. If you are trying to help your child learn to leave the computer calmly, but this is very hard, teach your child to leave other less desirable activities using the duration chart first. 3) If your child cannot do a task, the chart won't help. Consider whether the task needs to be taught in a more simple form, demonstrated, or taught when the child is older.

Below is an example of a crossed off Duration Chart.

Sing for Your Child

Today, Amy was less than enthusiastic about my ideas in our therapy session. Because nothing else seemed to capture her interest, I began to sing about a toy. I am being generous when I claim to have been singing. I stretched out the vowels and kind of piggybacked on some tune that I sort of remembered. "Amy wants the yellow car, yellow car, yellow car. Amy wants the yellow car. Here it is." I then handed Amy a yellow taxi--a refrigerator magnet which makes noise when you push a button. Amy took it and pushed the button and listened with interest to the sound of a car screeching, crashing into something and then a guy with a New Jersey accent saying "Where to?" The toy was too compelling because Amy pushed the button over and over. I wanted to move on. So I did some more singing.

Since I always have a parent right beside me in therapy, I hate singing because I am embarrassed by my lack of skill. But the problem is, singing works. Amy, the world class expert at ignoring what she is not interested in, chimed right in when I started to sing about the next magnet. "Amy wants the....." I paused. Amy looked over my magnet collection and sang "Duck". I gave her the quacking duck refrigerator magnet. Pretty soon, Amy was singing the whole song and asking for the magnets by name one after another. "Amy wants the radio, radio, radio. Amy wants the radio" Amy sang "Here it is!" I added-which is a dumb ending and I can see why Amy left that part off.

Singing is magic. Singing establishes Joint Attention when nothing else will. If you have not already done so, you have to try singing as an attention getting , vocabulary teaching, interaction sustaining, humiliating but worth it therapy strategy. It is even better if you can actually sing because then it is not humiliating. It is also good if you can quickly think of words that rhyme.

Tantrums in the Grocery Store

One of the families that I worked with had Tee Shirts made that said, "I HAVE AUTISM" for their son. They were just soooo tired of feeling embarrassed about their child's meltdowns in public places. But they were unwilling to stop taking him with them to the places they wanted to go as a family. With a beautiful, angelic little face, their son looked almost too perfect, like a model child. This beautiful face did not help parents much in a grocery store meltdown because, to the casual observer there was no obvious excuse for a five year old screaming and kicking and throwing grocery items out of the cart.

Another of my families moved to a new city and started attending a new church where on their second visit, a stern woman said "If you just let me take your daughter for the weekend, I could teach her not to do that." The dad, always quick witted, said, "Stay right here while I go home and pack a few of her things!" I think a sense of humor is, perhaps, a families best emotional defense.

I have a web site devoted to play but I know that parenting a child with ASD requires a variety of skills besides play--for example, learning to use visual supports of all kinds seems to be an essential parent skill. Many temper tantrums can be avoided when a good visual support is taught to the child. For example, the Almost Done/Stop cards, a visual support strategy suggested by Dr. Patrick J. Rydell is very useful. The parent shows the child a card in bright yellow that says Almost Done as a warning that an activity will soon end. After a bit, the parent places a card with a red Stop sign on it in front of the child and then ends the activity. Just this week, a dad came back to my clinic and said, "Wow! Those cards are amazing!"

I know that there are literally thousands of sites on the Internet with suggestions for the parents of tantrum prone youngsters but I have some favorites and I thought I would share one here:

http://www.angelfire.com/ky/touristinfo/tempertantrum.html