Laying Low During Autism Awareness Month

If you have been following my Facebook page (https://www.facebook.com/pages/Fumbling-Thru-Autism/102482513246303) you may have noticed I have been unusually silent this year for Autism Awareness Month. That is because my mind is a muddled mess.

I was more on the anti-autism awareness side last year, because I was upset with Autism Speaks due to their negative messages about autism. Autism Speaks started Autism Awareness Month and it is a big money-maker for their organization (It’s Autism Awareness Month! Click this button to donate! Would you like to give a dollar to Autism research with your purchase?, etc., etc.). For me personally, I am still not happy with the negative images that Autism Speaks has put out there in the name of research. I have seen enough of the shock videos and scary stats with no qualifying statements. But there are people who think that focusing on the “scary side” of autism is worth it in the end if it generates research dollars or they say, “Hey, my kid is very aggressive and has meltdowns all the time, I want people to know that!” And here is where I feel conflicted. I have taken time to really put myself in their shoes. What if I had a nonverbal child and we had not yet figured out a way to help him/her communicate and my child was not progressing at all and frustrated to the point of frequent meltdown and aggression? Would I want more research funding poured into a broad range of treatment methods? Would I feel differently about Autism Speaks? I have to admit that I might.

Where things also get sticky with my feelings about Autism Speaks is their support of Applied Behavior Analysis (ABA). I have followed a lot of “respect diversity” autism blogs in the last year and most of them are totally against ABA and one of the reasons they hate Autism Speaks is the organization is a heavy supporter of ABA. ABA seemed to fail my child, but recently I tried some of the methods again and they were helpful (see this post: http://wp.me/p2OomI-1dU). I still feel that there are too many poorly run ABA programs. I would love to see more research into the benefits of having an ABA program that can be run in a way that incorporates play, other methods of teaching, music, child interests, helpful technology, and addresses underlying co-morbid issues such as processing lags and motor planning issues*. If I put myself in the shoes of parents who did not have a good experience with ABA, and my child failed in ABA and then thrived with another therapy or learned to express themselves with a device /letterboard, I would be mad as hell that Autism Speaks was pushing ABA so heavily and not putting a lot of funding into alternative methods to ABA. On the flip side, if my daughter would have progressed rapidly with ABA back when she was 3, I would be singing its praises and saying it was the best thing invented. But I have the benefit (if you want to call it that) of having a child who made little progress with ABA due to processing and motor planning issues age 3-4, but now (at almost age 6) is able to benefit because her processing and motor planning have improved. Which means I can see both sides.

So, do I like everything that Autism Speaks does or says? No. But I can see the other side and I understand their point of view. I will just stay out of the fray and spread awareness my own way by writing blog posts and sharing my child’s uniqueness within our community.

Easter Bunny and Beth

Easter Bunny and Beth (Yes, my child who has autism likes people dressed in costumes. I have no idea why this surprises people so much. In many ways, she is just like any other kid.)

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*For a good book on how this problem can completely frustrate a child receiving ABA due to pointing difficulty, read Ido in Autismland, http://www.amazon.com/Ido-Autismland-Climbing-Autisms-Silent/dp/0988324709/ref=sr_1_1?ie=UTF8&qid=1396611360&sr=8-1&keywords=ido+in+autismland).

What’s Going On?

My friends have been asking “What’s going on” so often I feel like Marvin Gaye has been following me around serenading me.

It is no wonder. First I was homeschooling Kindergarten with a Waldorf approach, then this winter I proclaimed we are getting ready for evaluations for Kindergarten at our local public school. So I am writing a long overdue “update post” to get everyone up to speed.

What Happened to Waldorf?

We started out doing mostly Waldof-style (Oak Meadow, see http://wp.me/p2OomI-Ue) and quickly learned it was not the best curriculum for Beth. I made a valiant effort at engaging her in the fairy tales (minimized language, highlighted the exciting parts, etc.), which are a huge part of the curriculum, but Beth wanted nothing to do with them. I still learned a great deal, because the fairy tales had rather small illustrations, which led me down a path to understanding the visual scanning and attention issues that impact Beth’s ability to attend to books. I came to the conclusion that while there are some worthwhile concepts in the Oak Meadow curriculum, Beth did best with more traditional techniques (like flashcards, Oh the horror!) and workbooks with minimal clutter. Also, Oak Meadow seemed below Beth in some ways and above in others. At some point I just started skimming the books for ideas and then supplementing with standard Pre-K and K workbooks and special education materials (file folder games, pocket charts, etc.), and going at Beth’s pace.

Why Kindergarten Next Year?

A funny thing happened as we were homeschooling. Beth started showing typical signs of “school readiness” other than academics:

  • Let’s hear it for self-regulation! In the late summer and fall, Beth had a series of doctor’s appointments which sent her into a freak out at the beginning of each appointment, which was typical. Then something very new happened…she calmed herself down and coped. It took me a about 4 doctors visits to wrap my head around what was going on, but finally I was like, “Oh! THIS is self-regulation!”  Ever since then she has become more able to calm her self down. She is sleeping better, and putting herself back to sleep when she wakes up, and she is usually able to get enough words out to get her needs met before the freak-out ensues.
  • Interest in other children. Beth started smiling and following kids on the playground a little. Then she started bouncing on the trampolines next to kids at Sky Zone, as if she was trying to get their attention. And finally, she made it clear that I didn’t need to go with her on the trampolines or inflatable at jump places. She wanted to be on her own, and if a kid bumped her she didn’t freak out like she used to. I wouldn’t say she is totally ready to play with other kids or that she is always tuned into them, but she is generally more content around them now and showing interest.
  • Willingness to sit in a chair and on the floor. Beth isn’t thrilled about sitting in a chair to work, but she will do it if the reward is high enough (see token board article, http://wp.me/p2OomI-1dU) and we keep sessions short. The newest development is she will sit on the floor this way, which is a fine way the sit (criss cross is hard for kids with low tone):

sitting

  • Beth’s receptive language and ability to follow directions went way up, her motor planning and sensory integration took a huge upswing, and her expressive language started moving.

After noting these changes, I felt we should hold steady on K level academic work and do more language work. Her speech therapist led the way and we doubled up on speech therapy sessions with me doing more work at home with her. Also, I went back to the VB-Mapp and evaluated her and tried the ABA method again (now that I understood her visual scanning issues made flashcards a very good method for learning language after all, see http://wp.me/p2OomI-1dU). Now she can answer Yes/No to questions, request the potty, ask for or indicate she needs help, ask for food/drink, and much more.

With all the focus on language and all the positive changes in Beth, I decided it was time to call the school district and talk about placement. She has a lot of K skills, but probably not enough to make her ready for 1st grade. But that is fine with us, because lots of kids delay K for a year for a variety of reasons. The way I see it she will be going into the classroom with pretty good academic skills and can focus more energy on adjusting to the class and on social goals.

Evaluation #1 of Many

Today was the first evaluation, which was with a school psychologist who will compile her thoughts and recommendations from 4 other evaluators for placement (special ed, typical classroom with support, or combination). The psychologist came to Beth’s music therapy session at Ambler Music Academy. As soon as we pulled up to the building, Beth started freaking out saying, “potty, potty, potty!!!!” I drug her to the potty inside the building and she was crying inconsolably. The psychologist was running late so she missed this display of misery. As Beth was crying on the toilet I took some deep breaths and just thought to myself, if she is a mess so be it. It is what it is. The kid has been sick for over a week and is just pulling out of it. Somehow we talked through it and Beth didn’t really need to go potty, so I assumed she just wasn’t feeling well and was hoping we would drive home and go there.

After awhile, Beth calmed herself down and I asked her if she was ready to see her music therapist and she said yes. Then she went on to have a nice session where she showed natural imitation with her therapist, song fill-in skills, and her ability to show her happiness to be with her therapist through smiles and eye contact. She sat on the floor with her little legs tucked under her for longer than ever. I just focused on Beth and tried to forget the evaluation lady was there. Beth will place where she places and I have accepted that. I held onto gratefulness for all the skills she has gained: self-regulation, interest in others, sitting on chairs and the floor, integration, and expressive language.  She is dong the best she can and I am proud of her.

Autism Can Be Identified Earlier, Which Means?

A couple of days ago, I posted this article (http://www.healthcanal.com/genetics-birth-defects/48756-autism-signs-can-be-identified-earlier-than-formerly-thought-study-suggests.html) on my Facebook wall and it has been bugging me ever since. We can identify autism early and then what?  Throw a bunch of services at a 2-year-old child and hope something sticks?  It seems like prioritization is necessary, but no one wants to prioritize.

If you go onto the CDC website (http://www.cdc.gov/ncbddd/autism/treatment.html), it states early intervention is important and references one article about preschool education (technically early intervention is before preschool) and another article with an educational committee’s recommendation. The committee recommendation document is over 300 pages long (http://www.nap.edu/catalog.php?record_id=10017) and the upshot is in this paragraph taken from the executive summary:

The committee recommends that educational services begin as soon as a child is suspected of having an autistic spectrum disorder. Those services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, and developmentally appropriate educational activity toward identified objectives. What constitutes these hours, however, will vary according to a child’s chronological age, developmental level, specific strengths and weaknesses, and family needs.

So, do a bunch of therapy, throw the kitchen sink at a kid as young as possible, but we don’t really know which kids will respond and how well they will respond and what therapy is appropriate? And then there is line in the report:

Personnel preparation remains one of the weakest elements of effective programming for children with autistic spectrum disorders and their families.

Great, so throw a bunch of therapy at kids as young as possible, but chances are a good portion of your team will not be appropriately trained. It is enough to make a new autism parent want to cry.

My daughter Beth, who is now almost 6, was about 2.75 when she was diagnosed, and she had some OT (Occupational Therapy) and psychological support from 2.75 to 3, then started intensive therapy (ABA[Applied Behavioral Analysis], speech therapy, OT, and PT [Physical Therapy]) at age 3. Things did not go well in her early intervention and preschool program, so it is really hard to imagine that starting intensive therapy at age 2 with the same program would have made a world of difference. I will admit that from 2-2.5 she was still rather calm and had fewer stims and preoccupations. Maybe that is why it is best to start early, because you can teach more in that period and there will be a strong foundation for further work.  Given that consideration and what I know now about my child’s challenges, I would say that the following services at home would have been most helpful to Beth from age 2-3: 1. Play therapy like Floortime or a parent-oriented behavioral approach like the Denver Model, 2. A focus on body movement and motor planning, with an OT very knowledgable in treatment for dyspraxia, and 3. Language work (receptive and verbal) with a speech therapist using a Floortime approach.  But that is looking back and that is just what I think is right for my kid and our family. I have no idea what I would suggest to another parent who has a newly diagnosed 2-year-old child with autism. 

It would be great to have recommendations from an Autism Therapy Prioritization Committee* specifically geared towards 2-3 year olds, where they describe particular profiles of kids at that age who have autism and what therapies would most likely help. It would also be helpful if a prioritization committee would bite the bullet and chose which ABA programs and which developmental charts are best for 2-3 year olds diagnosed with autism. In addition, it would help to know which play-based models and certifications are recommended, so that parents can ask about those certifications when they are choosing therapists (many speech, OT, and ABA therapist hold these additional certifications). I doubt we will see this type of advice any time soon. And in the meantime, parents with young children who have been diagnosed with autism have the overwhelming task of deciding what therapies to do and which therapists to hire (or fight for through the school system). My heart aches for these parents and I believe the experts have a responsibility to prioritize and further clarify early intervention recommendations.

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*My name for my imaginary committee

Never Say Never

I never thought I would be writing this. We are back to ABA (Applied Behavioral Analysis). Whoa. Wha? Me? The mom who said a hundred times “ABA just didn’t work for us”?  If you are anti-ABA try to read on. If you are pro-ABA stop pumping your fist already and read on ;-)

For those who are new to the method, I attached a definition of ABA that I found on the BACB (behaviorist certification) site below.* As I understand it from my experience, ABA therapy for young kids basically means setting goals, measuring progress, and rewarding for doing work toward the goal. The reward can be anything (e.g., edible, play, iPad, sensory break). Generally, negative behaviors are ignored. I have never had much of an issue with the overall concept of ABA, but the devil is in the details of the ABA plan and the talent and experience of the ABA therapists. Being a top-notch ABA therapist to young children who need to work on verbal, academic, play, social, and fine/gross motor skills is a tall order. There can be hundred of goals to work on and they are all detailed in developmental maps (http://www.marksundberg.com/vb-mapp.htm , http://www.partingtonbehavioranalysts.com/page/ablls-r-25.htmlhttp://www.amazon.com/Denver-Curriculum-Checklist-Children-Autism/dp/1606236334/ref=pd_bxgy_b_img_z), but it is hard to determine how to prioritize goals, when a child is ready for goals, when a child has truly mastered a concept (without holes in logic and without forgetting what they have mastered later), and how to teach something to a child who may have a very different perspective of the world than his/her teacher. Also, a good ABA therapist will be skilled in relationship therapies like Floortime (http://www.stanleygreenspan.com/) and RDI (https://www.rdiconnect.com/pages/home.aspx), and will use a child’s interests to meet goals. It is not an easy job by any stretch of the imagination, which is probably why there are people, like me, who have had bad experiences.

ABA did not work out for us when Beth had intensive ABA therapy from 3 to 4 years old. I saw basically no progress with an increase in negative behaviors (aggression, sleeping issues, increased stress). The therapists were able to get Beth to be in a typical preschool classroom (With an ABA-trained aid who fed her squirts of glycerin on her hand, which she licked off as a reward for just being there. Glycerin? Long story there.). In the end it was clear Beth only cared about the reward and was not really tuning into the classroom. Occasionally when music was involved she seemed to have fun. So, we took a very long break from ABA and did Floortime and standard teaching methods at home. I wanted to see if Beth could do things without the edible rewards and if her language could progress with more natural methods like Floortime. Soon we added a speech therapist, because it was clear I could not do it alone and not with just Floortime. Over a year’s time with the Floortime approach, speech therapy, and standard teaching methods, Beth was really initiating with her body (by getting into everything around the house) and verbally (rapid requesting for things she wanted). But slowly, ABA sneaked back into the picture. And when I tried it this time, it worked better than before and I finally understood why people support ABA. When it comes to autism and therapies, never say never is my motto now.

Rewards for Work

To say that Beth and I struggled trying to do schoolwork in our homeschool is an understatement. It was tough to get her to work for a couple of minutes without rewards. Often she would get very upset before we could complete the task. With no other option, and despite my loathing of edible rewards, ABA made a comeback with me introducing rewards for schoolwork. I worked very hard to find a range of rewards, and over time we have a nice set of both edible and non-edible rewards (examples include peppermints, mint floss, blowing bubbles, iPad time, batting a balloon around, and a break in her room where she usually jumps on the bed). Why the need for such high reinforcement for just 5-10 min of school or language work? In short, it is incredibly difficult for her to focus on the task (due to competing sensory interests), coordinate her body and language, and sit still. I always thought if we got the work level right or made the task extremely fun it would not take an additional reward, but I tried everything and I still had to use the “additional” rewards.

The additional rewards worked, but Beth reached the point of rapid requesting for items and we had a new problem. She would bug me constantly for the reward because she finally had the words. My friend used a token board with her son and it worked wonders, so I decided to make one to space out her rewards and teach her to wait. I believe it works great for Beth because it gives her a sense of time and how long she needs to wait in a visual representation.

Token Board (front). I tell Beth  moves 1 penny into a small box after doing some work and after 4 pennies are earned (moved into the small boxes) she gets the reward in the large  box.

Token Board (front). Beth moves 1 penny into a small box after doing some work and after 4 pennies are earned (i.e. moved into the small boxes) she gets the reward in the large box. Velcro is used for attachment of rewards and coins (Side note: I rotate pennies, nickles, quarters, and dimes so that Beth is learning the coin names too).

Token Board (back). Reward choices are on the back of the board and after Beth chooses her reward, I move it to big box in the front of the board.

Token Board (back). Reward choices are on the back of the board and after Beth chooses her reward, I move it to big box on the front of the board.

I try to focus on the positive and be happy we are able to use rewards effectively now. But I can’t help but wonder what would have happened had a variety of rewards and a token board been used in Beth’s previous ABA program. She was so hyper-focused on the glycerin reward and her verbal requesting was so sparse it seems like an obvious missed opportunity. But maybe Beth just needed time to mature before she accepted other rewards and a token board. We’ll never know.

Flashcards & Developmental Maps

I can’t remember why, but about 4-5 months ago, Beth and I pulled out some simple I Spy books that she had when she was 2 (http://www.amazon.com/Spy-Little-Toys-Jean-Marzollo/dp/0545220963/ref=pd_sim_b_11?ie=UTF8&refRID=05MWP470F164HA9XWE4P). I remember she used to point at some items before autism really became evident at just before age 3, but she really couldn’t attend to the book or point to them at all when we tried it again recently. To make a long story short, after a visit to an ophthalmologist and a diagnosis of Oculomotor Apraxia (not the most severe kind, thank God), I became aware of how truly difficult visual scanning and discrimination is for Beth. The ophthalmologist told me she most likely will grow out of it, and to make things as easier on her as possible. He suggested a distraction free work space, picture books that were not too busy, and a book holder for reading (http://www.amazon.com/Portable-Reading-Document-Holder-adjustable/dp/B005IV6U0U/ref=sr_1_1?s=office-products&ie=UTF8&qid=1395155629&sr=1-1).  I also have Beth use a slant board for writing and doing activities, because scanning a flat surface is more challenging than on the slant board.

In addition to the visual issues,  I realized Beth had a terrible time initiating pointing. For awhile I had to nudge her elbow and rest her hand on the table in front of the I Spy book, and occasionally had to sweep my hand across the book to get her attention and help her to point. Over time she is doing much better with pointing to things in books. I remember we had great difficulty in the previous ABA program with pointing to flashcards. She used to pick up the cards or brush her hand across them instead of pointing. I suspected then that she was actually getting some of them wrong when she knew the answers. Now that we worked through her motor issues with pointing I can say that was definitely the case. No wonder she was frustrated.

The experience with the I Spy books got me thinking that maybe the ABA flashcards I thought she hated were not such a bad idea after all. I had asked the ABA therapists why flashcards were necessary for her sessions but I did not get a good answer. Now I know if you get the right flashcards, they can be very useful, especially for kids with visual scanning and discrimination problems (the flashcards should not be so big that it requires a lot of scanning, not so small that it is hard to discriminate the picture, and a white background is best….unfortunately we did not have the right flashcards in the previous ABA program). Put simply, flashcards are visually easier to scan to find the answer to a question. Also, flashcards give a visual grid of choices when you are working on language goals, which if the scanning issues have been addressed, reduces frustration.

So, I stopped thinking of flashcards as the enemy and went back to our old developmental map from her previous ABA Program, the VB-Mapp (http://www.amazon.com/VB-MAPP-Behavior-Milestones-Assessment-Placement/dp/0981835627/ref=sr_1_1?s=books&ie=UTF8&qid=1395157949&sr=1-1&keywords=vb+mapp). With the help of Beth’s speech therapist and the VB-Mapp to set goals, we did a lot of receptive work (pointing to answers) and expressive language work with flashcards and Beth has gained a lot of skills.

I definitely have a lot of issues with the VB-Mapp and I would suggest ignoring the first list entirely and going with the second more detailed list. For some reason some of the secondary tasks on the second list within the book don’t quite align with the main goals they are associated with, and yet the secondary goals are very important for children like Beth who need every step taught. My biggest beef with the VB-Mapp is a part that states that children should respond in a certain amount of time (it is called fluency). Or else, what?  The therapists gave her the answers, that is what (errorless learning is what the therapists called it). I think the theory goes that we should give answers to reduce frustration, and some therapists say that the children are just in a habit of not answering and they need to answer faster. This frustrated Beth to no end. I know she had something in her head that wanted to come out, but she just couldn’t get it out when she was 3. I argued with the therapists to give her more time (because she often did answer if given enough time) and we struck some sort of compromise. But her “amount of time to answer” and her ability to answer at all was very inconsistent back then. Now she can answer fast, and all I can say is that over time, her processing of language and ability to speak an answer has gotten faster without ABA.

When we stopped ABA the first time, we gave Beth a lot of choices, asked her what she wanted and what she saw, and worked on receptive directions tirelessly. We worked with a great speech therapist who is very good at Floortime. One day we noticed Beth’s receptive language was way up, later we noticed she was singing, then later more spoken words started coming out. Then we tried ABA again and it seems to work. So, maybe she just wasn’t ready to speak when we did ABA from 3-4 and now she is (?)  Which is the frustrating thing about ABA. You have the map, you have the method, but you have no idea how to prioritize or teach each individual kid. And you definitely have problems deciding when a kid is ready to attack a goal. Like I said. Being an ABA therapist is a tough job.

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Definition of Behavioral Analysis (taken from http://www.bacb.com/index.php?page=2): “Briefly, professionals in applied behavior analysis engage in the specific and comprehensive use of principles of learning, including operant and respondent conditioning, in order to address behavioral needs of widely varying individuals in diverse settings. Examples of these applications include: building the skills and achievements of children in school settings; enhancing the development, abilities, and choices of children and adults with different kinds of disabilities; and augmenting the performance and satisfaction of employees in organizations and businesses.”

It is Not About What She Doesn’t Want to Do.

It is about what she wants to do. The experts always say that “overwhelming sensory input” (over-stimulation) is the problem that leads to tantrums and meltdowns on outings. But for us, Beth’s extreme attraction to certain sensory input (which I think of now as part of her host of stims*) are the bigger problem, because her stims out-compete the activities that I want her to enjoy during an outing.

It is a simple idea, that what she enjoys is not what I enjoy and that her fascinations are beyond my comprehension, but it is hard to remember since I do not experience the world the same way that she does. The idea just kept slipping from my mind and it was replaced with me constantly saying to myself “Why won’t she just…” in frustration. But we are at a point now that outings are often peaceful and without “issues” thanks to mutual understanding and compromise. And maybe mostly because I finally accept and respect her wonder of car rides, motion, patterns, and sounds.

It’s the Car Ride Stupid

Here is Beth, on her way to an outing:

When I look at this video I wonder why it took me so long to accept that a big problem with community outings is they are competing with her beloved car ride, which is a combined auditory stim (hearing the music, often sames songs repeated) and visual stim (seeing the things outside the car fly by). Why the hell would she ever care about the outing when she could have so much more fun going back in the car?! Now that we understand each other, and we have some back and forth communication, this is how an outing often goes:

  • Beth doesn’t want to get out of the car. I have prepped her for the outing before we left the house and on the ride there. I say, “I know that you want to stay in the car. But first <insert restaurant, store, or activity>, then we will ride in the car again,” She gets out without much protest, partially because I validated her desire to stay in the car and she understands my validation, partially because she has learned that sometimes she has to do what she doesn’t want to do, and partially because she is changing her interests and is learning to enjoy certain aspects of outings. Also, maybe the draw of riding in the car and listening to music has gone down just enough from a sensory aspect that she is able to accept doing other things.
  • Beth sometimes seems anxious at first on the outing and intermittently during an outing. I ask her what she wants. Sometimes she says to go back in the car, but I repeat that we will first do the outing, then the car. I ask her if she wants something else. She usually asks for an edible (food, a drink, ice to munch on, peppermint, etc.).
  • I always keep in mind now how much she loves riding in the car and listening to music, and I try to stay a reasonable amount of time (for Beth, not for me) and end on a high note. When I sense she is done with the outing, I ask if she is ready to leave. I might do one last negotiation to have her do a couple more things on the outing before we leave.

It took us years to get to this point, but we are in a good place now with going places. And when we do a series of back to back stores in a strip mall without her screaming, or when we stay 2+ hours somewhere without Beth getting desperate to go back in the car, I am still shocked. I look around during the outing and think, people, look at this, isn’t it amazing? But what is more amazing is no one seems to notice us at all.

Stims on Outings

I had a lot of trouble getting Beth to answer questions on outings and she would have great difficulty looking at what I wanted her to see. Then one day I simply starting playing a “What do you see?” game with her and her answers were, “the lights,” “the flag,” “the trees.” That opened my eyes to what was important to Beth.  So far, I have learned that Beth is attracted to repeated patterns (e.g. lines of lights, ceiling tiles, windows with subdivisions), movement (e.g. trees and flags moving outside that she can see through windows, moving and blinking lights on vending machines and video games), and a variety of sounds. She is not really overwhelmed by sensory input, she is just really attracted to certain sensory input (stims) and it is simply out-competing what I want to share with her. The “tell me what you see” game is a great starting point for having her take note of her surroundings. It gives me an opening to validate what she sees and likes, then I can take a turn and add to her thoughts or share with her my observations. Give and take, not take and give.

Another stim hurdle on outings is that Beth does a lot of running while looking straight down at the floor. She seems to have no idea where she is when she does this, but she rarely runs into things or people (anymore). Lots of therapists have taken a shot at describing the running and looking down at the floor behavior with labels like proprioception problems, pacing, over-stimulation, impaired self-regulation, or motor planning issues. One day I realized that watching the floor or the ground move under her feet was probably a lot like looking at things going by when she is riding in a car. Now I tell her to just stop running around sometimes and then tell her to look around. Look at the people, look at the things, and “tell me what you see.” And she does. Again, looking at the floor moving by was out-competing everything in the environment. Have you ever noticed the variety of patterns on the ground and floor and how unique they all are, and how interesting they are when you are running?  I never did either, until Beth opened my eyes.

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*A definition of stims: http://autism.wikia.com/wiki/Stimming

 

Breaking the Routine

This advice often shows up in autism blogs and in books on autism everywhere: routines and schedules are essential for children with autism!!!!! Many autism parents I know live and die by schedules. I have tried schedules with Beth a few times over the years, but my heart was never in it. The way I see it, inflexibility is a core feature of autism. How is my kid going to become more flexible if I lock her into set routines and schedules? Now, at almost age 6, she is a fairly flexible child who can run errands with me, go out to meals in restaurants, and make it through fairly noisy parties and outings. The more outings I do with Beth, the more I learn about what she likes, what sets her off, what helps her calm down, and how to strike the right balance between challenge and things she likes during an outing.

Although we do not have a strict schedule to our days, we have a general rhythm with the homeschooling lessons and some fixed outings (therapy, play dates, etc). So it was an extreme test of flexibility when we drove 19 hours from our home in the burbs north of Philly to Delray Beach Florida for a 3 week vacation with Beth’s grandparents. It was my husband’s idea to go someplace warm in the winter and his parents made it happen by finding the location, renting the house, following me down there on the drive, and helping me out in ways too numerous to list here. Hubby flew in for a great visit and  then helped me drive back home. Since Beth has a passion for watching scenery fly by while listening to music and she loves stopping at hotels with pools, driving that far by car with her wasn’t a big worry and it seemed like a better option than going by plane. My real worry was the uncertainty of Beth’s reaction to obliterating what little routine she had in her life. But Beth surprised us all with how well she did with the trip and I learned some invaluable lessons. The most important of which was that Beth is far more flexible than I ever imagined.

My main message in this post is this. If you have a child with autism and it is very difficult to go on community outings, take vacations, or break the routine in some other way, I urge you to try it and persevere. My advice is to start with very small goals, like picking up 1 item at the store, and work from there. It may take a long time to be able to survive a full shopping trip or have a good vacation(it took us years), but attempting to increase your child’s flexibility is time well spent. You never know unless you try and you may end up here some day…

Vacation Highlights

1. Song Request Success Leads to Language Improvement. Beth has always loved riding in the car and listening to music, but she would occasionally have outbursts. Why? Because she didn’t have enough language to tell me what song she wanted. Right before this trip she started to grab lines from songs and use them to request songs in the car. With the long length of the road trip, she had plenty of time to practice her song requests with the thumb drive full of songs I brought and she was able to say understandable snippets from hundreds of songs by the time the trip was over. She had ZERO outbursts on the way there and back because she could tell me what songs she wanted. As she practiced her song requests, we worked on saying the words clearly. Her clarity continues to improve and she bursts out in song at random times now.

Road Trippin' Beth

Road Trippin’ Beth

2. Bye-Bye to Old Comfort Items. We lost her beloved sippy cup on the way there and it wasn’t a big deal after all. We also got rid of glycerin based products (like a small amount of edible toothpaste on a toothbrush, which she liked to chew on for comfort). And finally, because she kept requesting baby oatmeal for comfort on the trip (I still fed it to her because she liked it and it had vitamins, so why not), we figured out that it had a laxative effect on her. A double hitter… bye to the old oatmeal comfort item and bye to tummy troubles.

Saying NO! to Old Comfort Items

Saying NO! to Old Comfort Items

3. Expanding on Beth’s Love of Water.

  • Swimming in the Ocean. The water near the shore of Delray Beach is shallow for a long distance out, which turned out to be perfect for Beth. She overcame her fear of the noisy, unpredictable waves and actually swam in the ocean. She was the only kid her age I saw out there without arm floats or a life jacket who was swimming in the ocean and managing the waves. Of course I was busy staying close by to keep her alive so I have no pictures of video of it.
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Beth and Me at the Ocean

  • Playing in Streams of Water. Sure, she did her typical head-dunking thing. But for the first time she enjoyed getting hit by a water gun and welcomed the unpredictable water fountains at Palm Beach Zoo.
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Daddy Manning a Water Gun, Beth Eyeing It Suspiciously (Sugar Sand Park, http://www.sugarsandpark.org/)

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Fountains at Palm Beach Zoo (http://www.palmbeachzoo.org/)

  • Bumper Boats. Surprisingly she wasn’t afraid of the bumping or the loud motor. She asked to go again when we finished !?
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Bumper Boat Bananza (Boomers!, http://www.boomersparks.com/site/boca/)

4. New Interests

  • Animal Awareness and Love of Birds. We went to a lot of animal parks (e.g., Palm Beach Zoo, Flamingo Gardens, and Lion Country Safari). In general her awareness of animals and ability to name creatures is at a high after this trip. But the real surprise was that she seemed most amused by the birds. Since Beth shows her amusement in subtle ways when we are on outings because she is working hard to process all the sights and sounds, I don’t think I would have noticed her pattern of subtle smiles and more attention to birds unless we took this trip.
Butterfly World (http://www.butterflyworld.com/)

Grandpa Feeding a Bird at Butterfly World (http://www.butterflyworld.com/)

Yes, She Even Loved Bird Costumes (Palm Beach Zoo, http://www.palmbeachzoo.org/)

Yes, She Even Loved This Bird (Palm Beach Zoo, http://www.palmbeachzoo.org/)

  •  Activities With Unpredictable Movements. It has been a long time coming, but kiddo is finally starting to embrace side to side movement and activities with unpredictable movement of her body. She showed that she is ready for these activities on the trip. Some examples include suspension bridges that move when others are on them (which made her giggle), climbing ropes, and the rolling movement of a camel ride (plus she just thought the camel’s face was darn silly).
Grandpa Rocking a Suspension Bridge and Beth Loving The Movement

Grandpa Rocking a Suspension Bridge and Beth Loving The Movement (http://www.butterflyworld.com/)

Crazy Climbing (Sugar Sand Park, http://www.sugarsandpark.org/)

Crazy Climbing (Sugar Sand Park, http://www.sugarsandpark.org/)

Cameling It (Lion Country Safari, http://www.lioncountrysafari.com/)

Cameling It (Lion Country Safari, http://www.lioncountrysafari.com/

  • She Learned How to Ride a Bike on Vacation! 

5. Lessons Learned

  • Sometimes Smaller Venues are Better. Beth did fine at the bigger zoos, but the small Nature Centers that seem to be everywhere in Florida were perfect for her. Each Nature Center usually has a prime focus or attraction, and they are small so they are not overwhelming. An added bonus is that Nature Centers are free (they only suggest a donation). Another great “donation only” small venue was a children’s science museum inside Sugar Sands Park. The larger Children’s Museums are still too much for Beth (we tried one in Miami and it was rough with the echo and noise), but the smaller venue children’s science museum was a score!
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Turtle Recovering From Injuries at Gumbo Limbo Nature Center (http://www.gumbolimbo.org/)

Shark Feeding at Sandoway House Nature Center (http://www.sandowayhouse.org/)

Shark Feeding at Sandoway House Nature Center (http://www.sandowayhouse.org/)

  • Not Ready for Go-Karts. These things scared the hell out of her. At first I thought it was the motor, but the motor wasn’t that loud and she tolerated the bumper boat motors just fine right after the go-kart attempt. When we got home she did not like sledding either, so my new theory is she doesn’t like riding fast low to the ground right now.
  • She Loves Horses, But Needs a Slow Approach. We tried both horse therapy (where people walk along side of her and she is in the saddle solo) and Horse Boy Method (where someone rides with her). Beth clearly loved the horses and always asked to go on them, but she scared easily when the horse started moving. In retrospect, I think the staff took things too quickly for Beth and she needs a much slower approach to horseback riding. I count this as an invaluable lesson learned and we plan on doing horse therapy at home in the future.
Horse Therapy (Johnson's Folly Horse Farm, http://johnsonsfolly.com/)

Horse Therapy (Johnson’s Folly Horse Farm, http://johnsonsfolly.com/)

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Horse Boy Method (Johnson’s Folly Horse Farm, http://johnsonsfolly.com/)

  • When We Couldn’t Get a Heated Pool at a Hotel (Which Seems to Be Common in the South), We Used Our Y Membership to Get in Free at Any YMCA on the Road. Also good advice…if you need a strip club on the road, stop in a military town. 

    Kiddo on a Quick Swim Stop on the Road Near Fort Bragg in North Carolina.

    Kiddo on a Quick Swim Stop on the Road (Near Fort Bragg in North Carolina)