The “Right” Fidgets

This has been a big summer for us. It is the summer we finally found fidgets that work for Beth. They were not the standard variety though. I want my money back for all the sensory balls, toys, weighted this or that, and junk I have bought over the years (if you are reading this post and think, I wonder if she tried…the answer is yes). Finally, we found two things that actually work:

1. Bead Necklaces to Reduce Flapping on Outings

Why do I care about flapping on outings? Because she flaps and looks at her hands and does not tune into her surroundings when we are out. She can’t safely cross a street or learn about her surroundings and communicate with others when she flaps and looks at her hands so often. Why does she flap?  As far as I can tell it is many reasons…happiness, anxiety (often due to noise), frustration, and boredom seem to be common triggers. Flapping in cooler weather was not an issue because coats seem to calm the flap (see http://wp.me/p2OomI-1gf). But when the coats came off in spring and summer, nothing I tried to give her or distract her with would calm the flap.

Then, while visiting Beth’s grandparents, Beth put this seed pod necklace on:

Bead pod necklace

Seed pod necklace (search for “seed pod necklace” on etsy or ebay)

I noticed she played with in instead of flapping as much. All I had to do was remind her to put it on before we left the car (she takes the necklace off and flaps and rocks out to music in the car for fun) and it was like magic. Flapping on outings was greatly reduced overall and she was able to tune into her surroundings. But soon Beth started to put the necklace in her mouth, bite on it, and rub it across her teeth. Since I was worried about Beth damaging her teeth, I went on a hunt for an alternative.

I tried some silicone necklaces that are worn by moms and used as a nursing focus tool and/or teething option for their babies (food grade silicone, for example…http://www.amazon.com/Sassy-Baby-Beads%C2%AE-Silicone-Teething/dp/B00JT0DCJS/ref=sr_1_5?ie=UTF8&qid=1441192857&sr=8-5&keywords=nursing+necklaces+sassy). She did not like the single pendant version (which is similar to autism chewelry) and the beaded necklace was too big and heavy.

Nursing Mother Silicone Bead Necklace

Nursing Mother / Teething Silicone Bead Necklace

It seemed Beth preferred smaller lightweight beads. I found 9mm food grade silicone beads (on etsy, ebay, amazon, just type in “9 mm silicone beads”) and sometimes added something bigger at the bottom of the necklace. I used these sets to make her necklaces: http://www.amazon.com/dp/B00U6XXW60/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=31MEQ0C8W2TBH&coliid=I1C4Z3NY21VMVQ and http://www.amazon.com/gp/product/B00OXIBKP4/ref=s9_dcbhz_bw_d54_g201_i2_ps). These work very well for her, and they are stylish too! Note the necklace is most effective when it is long enough so that Beth doesn’t have to raise her hands up much to use it. I like the safety pop away clasps that came with the kit I bought -I just tied a simple knot on each half of the clasp and popped it together (here is a close up of the clasp, separate string and clasp link: http://www.amazon.com/dp/B00ZQ66DKY/ref=wl_it_dp_o_pC_S_ttl?_encoding=UTF8&colid=31MEQ0C8W2TBH&coliid=I2CP4OHA679GI3). The clasp does not come apart easily, so even when she pulls on it it doesn’t break. I noticed the beads tend to tangle in Beth’s hair in the back, so I left beads off the upper portion of the necklace.

IMG_6353[1] IMG_6404[1] IMG_6455[1] IMG_6548[1]

2. Window Gel Clings for Desk Work

Beth LOVES gel clings like these: http://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=window+gel+clings . She loves getting new ones, their stickiness, their oily smell (ewww), and, unfortunately, she loves to rip them apart. Because she rips them, I got stuck on the idea that we should limit them and use them only as a reward for work. But she got very frustrated during work when I told her she would have wait for the gel clings, so eventually I gave in and let her keep the gel clings with her at the table. And just like that, the key to getting her to sit at the table for long periods of time was found. Sure we have gel clings all over the place and I am forever on the hunt for gel cling deals (CVS, Target, Jo-Ann Fabrics, ebay, craft stores are the best places to find good deals, especially at end of season). But who cares. It helps her sit happily and work for long periods of times without stress (when she is writing, I have her hold a gel cling in her left hand and it is surprisingly not distracting). Here is our “first day of first grade” pic, with gel clings all over the place.

IMG_6138[1]

I guess the upshot is this. Observe your child and she/he will lead you to the best fidget. Also, tread carefully when trying to use a sensory item as a “reward.”  With the gel clings it actually backfired and made her less focused. It wasn’t a reward, it was a sensory tool she needed to use WHILE she worked.

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The Advice I Wish I Received

“What we have here is a spectrum disorder.” That is how the news was delivered to me as my highly anxious almost 3 year old was itching to get the hell out of the evaluation center. The next bit of insight was, “I think whether you do behavioral therapy or Floortime doesn’t matter, but you just need to do something intensive with a lot of hours. It is a good sign she has language. She will need to have therapy in a very calm and quiet environment.” That bit of advice was followed by, “Remember, you know her best.”

With that, we were out the door and I was looking dazed and confused, because of course at the time I did not feel like I knew my kid at all and had no idea what to do with her. Their advice was minimal and so superficial it was basically worthless. But then again, we were at a center where they were behind schedule. Many more kids to diagnose were sitting in the waiting room. At least they were sitting, mine was screaming her head off, so much my mother had to push her in her stroller in the hall to try to calm her down.

Did they know she was different from most they diagnose from the start? Were they hinting at that in their “advice” … that piece about the “calm and quiet environment” haunts me to this day. Yes, she has more anxiety and sensory issues than many kids I have met on the spectrum. Did I just miss the hint? Then I tell myself, there was no way I could have known that her anxiety and sensory issues at the time would predict she would be a slow progressor. And there was no way to know that her personality makes really pushing and forcing her to do things a total backfire….that meeting her where she is and slowly expanding her was the answer.

What advice do I wish the evaluators would have given me?  What could have made a difference? Well, this, for a start:

1. Your child is on the spectrum, which is very wide. Some kids progress fast and others progress more slowly. There is no way to really tell what your child will do, so it is important to meet her where she is and help her make small steps forward. Try to remain in the present, because freaking out over an unknown outcome is not going to help her.

2. Co-morid issues are possible. Make sure all underlying medical issues are understood and consider how they can factor into behavior. (Note: In our case, dyspraxia and oculomotor apraxia ended up playing a huge role in her development.)

3. Because of her anxiety and sensory issues, pushing her too hard can backfire. You must learn to read her and understand her way of thinking and talking, and you will become her interpreter to help others understand her. Continue to listen to your instincts and use careful observation to hone in on her subtle cues. Floortime is helpful, because it teaches you to meet her where she is and slowly expand her to get her ready for interacting with other people. Most Floortime therapy is private and not covered by insurance, unless it is integrated into occupational therapy, speech therapy, and behavioral therapy. Be aware that many therapists say they are proficient in Floortime techniques, but they are not.

4. There will be many therapists involved in your child’s care, so insist on team meetings to keep everyone on the same page. On your child’s early intervention (3 and under) and school-based (preschool to school years) teams, she will have an occupational therapist (to help with fine motor skills, activities of daily living, and sensory issues), physical therapist (gross motor skills), speech therapist (articulation and general speech work), and behavioral therapists (help with coping and a variety skills which often overlap with the other team member’s goals). It is very easy for confusion and inconsistency to happen with so many team members, so insist on frequent communication between team members.

5. The bulk of early therapy will be performed by behavioral therapists and their aids (verbal work and academic readiness), because applied behavior analysis (ABA) has the most data in the literature and therefore is funded by school districts and insurance companies. Behavioral therapists can help with strategies to control anxiety (for example, use first we do this, then that language to manage expectations) and use developmental maps to form goals. You must decide what types of behavioral therapists you want…those who do more natural therapy (look up pivotal response, Denver Model) or those who do more rote drilling. In current literature, the field is tending towards more natural, play based and relationship based therapies integrated with the behavioral therapies (look up Floortime and RDI for relationship based therapies). In reality, behavioral therapists who are proficient in relationship based therapies and natural ABA are hard to find. Ask tough questions and don’t back down.

6. When something isn’t working, move on. Don’t be afraid to fire people. You are the parent and you make the decisions.

 

 

What We Have Here is a Charlie Foxtrot

I have been sitting here staring at my computer screen, trying to think of what to say about our public school experience and why we are returning to homeschooling. Do I go off on how, as in my child’s early and intermediate intervention experiences, we once again had the problem of various team members thinking in silos when managing my daughter’s case? Maybe I should be kinder and say, she does have many co-morbid conditions and it is complex, so she is a challenging case and it is just easier for her to learn at home from one person who knows her whole history? But every time I sit down at the computer, one word pops into my head and will not leave, so I just looked up the exact definition for creative inspiration:

Clusterfuck (urban dictionary definition): Military term for an operation in which multiple things have gone wrong. Related to “SNAFU” (Situation Normal, All Fucked Up”) and “FUBAR” (Fucked Up Beyond All Repair).

In radio communication or polite conversation (i.e. with a very senior officer with whom you have no prior experience) the term “clusterfuck” will often be replaced by the NATO phonetic acronym “Charlie Foxtrot.”
Example: By the time the artillery came in the enemy was already on top of us. It was a total clusterfuck.
Okay, to be polite, I will say we had a Charlie Foxtrot. I tried my best to help guide them, but there was no leadership for my daughter’s case – no one person at the school that could understand all my kid’s challenges, problem solve to work around her issues, and simultaneously figure out her strengths. Thinking and working in silos led to an unsolvable mess, or at least a mess that could not be solved for a very long time (and not without expensive advocates and/or lawyers, with uncertain outcomes and a lot of unnecessary stress). Meanwhile my daughter’s development kept sliding downward and the clock was ticking.
In short, these are the negatives of the experience:
  1. I learned that our team thought they knew how to engage autism, but they are totally untrained for the “difficult to engage” child. I know they are not qualified because we have hired high-priced consultants and therapists who are masters at Floortime (no dear person at our first IEP meeting who thought she was a Floortime expert, it is not working on the floor, it is a method for engaging a child that requires you put your adult agenda aside [sort of, because you still have to have a firm grasp of development and keep goals in the back of your mind to gently expand the child] and it does require formal training). Orienting my child and helping her tune into her surroundings and other children was missing when I observed. There seemed to be the underlying assumption that she was very difficult to engage and there was nothing to be done about it. During 4 hours of observation during education week, I saw many missed “communication bids” from staff that could have led to an engagement. My offers to make custom visuals of favorite stories and send in motivating materials were brushed aside.
  2. My kid was getting less socialization in school than out of school. When I observed Beth at school she seemed disconnected. She was not being helped to tune into others and engage and “social group” is once a week. Need I say more? She got more out of going on play dates, to play centers, and going on community outings when we homeschooled.
  3. I now get why the “presume competence” crowd is totally pissed off. It is because the assumption in our school is that the goal is to catch up to peers in totality, and when you have a child with extreme uneven development in motor planning, fine motor, expressive language, play, physical capabilities and academics, he/she is basically written off as incapable. For example, staff simply cannot wrap their head around a child who can do academics, but only if given the right motor planning and expressive language supports. I am aware that my child cannot motor plan for shit, but we are working on it and she is making slow progress. So I begged the school in the beginning, please don’t let her die of boredom working on the same concepts over and over…fix the motor plan and expressive language used for academics so she can progress and work on different motor plans in occupational therapy and language issues in speech therapy. It seems simple, but I couldn’t get anyone to consistently fix the motor plans and language constructs due to the number of people involved.
  4. If you have a child with co-morbid issues like dyspraxia, visuomotor problems, low tone, and anxiety, it is hard for staff to remember how to support him/her. I would look up after trying to explain my child for the 50th time and see the familiar stare of deer in headlights. So the need for accommodations like elevating work, right table height, simplified layout, using her finger to guide her reading, working on the lower part of an easel, special prompting to help her move her body, etc. was lost on most staff.  Also, My child could not sit at school, but she can sit at home, so how can she reach her academic potential? Part of it was the totally unsupported seating at school, which was only resolved when I brought in our own chair from home because the mammoth system moved so slow. But also I think she was overstimulated and stressed. So while Beth was not totally flipping out in school now (yeah! progress from the old days!) she was still anxious. Which brings me to my next point.
  5. The final nail in the coffin was the behavioral report. I love that these reports like to “note” possible sources of “behavior” from parents, suggest OT assessments, admit history of anxiety, but in the end, our children are treated not as human beings with feelings, but children to be controlled by static “if child does this, then do that” formulas that a behaviorist can hand over to staff. I cannot live with that. I agree that Beth’s stimming can get in the way of learning and engagement is a problem, but I want to work with Beth to help her help herself. I want staff to own up to their end of the engagement problem and be trained to better engage her. I want staff to try to understand what she is thinking and why she is doing what she is doing when she is stimming. Otherwise, stopping “stimming behaviors” in a blind fashion will lead to worse behaviors and a child who feels powerless and misunderstood. When “behaviors” occur, I want all staff trained to see my child as a whole, and combine child psychology, behavioral strategies, OT techniques, and sensory strategies to help her. But that is just not the way the system works and I am not sure if it is a training issue as much as it is a mindset.

And these are the positives of the experience:

  1. I had an awesome home behaviorist and she had some good ideas. I will miss her. She encouraged me to weave intraverbal goals into play and throughout the day and that will be a big effort going forward.
  2. I learned we need to work harder on engagement and we need to work through some of the stim issues.
  3. Let’s just say my confidence in my homeschooling abilities is up. Way up.

Sequencing is a …

XXXXX. You fill in the blank (hint, it rhymes with witch).

Not that sequencing is a bad thing per se, it has just been a huge struggle for Beth. Sequencing with pictures is important, because it is a great tool for teaching basic story telling, which helps with conversation and reading comprehension, and it is also useful for teaching steps in a process (i.e. “how” things are done). Beth’s difficulties with visual attention, visual motor planning, gross motor planning, working memory, expressive language, inference from pictures, and impulsivity means we were stuck in basic 3-step sequencing for months with essentially no progress. We kept plugging away at it though and we finally have a process that works. Below I give my advice and examples of how we do 3-step sequencing based on some hard lessons learned. I hope this will be of help to others who are struggling with basic sequencing.

1. Ditch the store-bought sets and make sequences that are meaningful to the child. After I tried and failed with about 5 ready-made sequencing sets, I resorted to taking my own pictures of my child doing every-day tasks. The payoff was immediate. I suggest choosing sequences that the child is very, very familiar with and asking what he/she sees in the pictures before you use them for sequencing. If the child doesn’t understand what a picture is trying to represent (the inference), then re-take the picture to correct the inference, ditch the set, or save the set for later. Remember, in the beginning the goal is to work on the sequence in and of itself. Here is a list of common basic sequences and pictures of a few sets we use:

  • Favorite foods/drinks (e.g., peel banana, eat banana, throw away peel; open yogurt, get spoon, eat yogurt; open water, pour water, drink water)
  • Favorite activities (e.g., open bubbles, get wand, blow bubbles)
  • Going to familiar places (e.g., get in the car, Mommy or Daddy drives, we got to [familiar place])
  • Familiar processes (e.g., go into store, get shopping cart, pay; unlock door, open door, walk outside; open car door, get in the car seat, Mommy or Daddy drives)
  • Beginning, middle, end of favorite books or videos
  • Daily living tasks (e.g., put on pants, put on socks, put on shoes; put toothpaste on toothbrush, brush teeth, rinse; go potty, get toilet paper, flush; turn on water, get soap, wash hands; turn on water, take a bath, dry with towel)
Sequence 1: Open yogurt, get a spoon, eat yogurt; Sequence 2: Open bubbles, get wand, blow bubbles

Top sequence: open yogurt, get a spoon, eat yogurt; Bottom sequence: open bubbles, get wand, blow bubbles

Top Sequence: get in the car, Daddy drives, go to Subway; Bottom sequence: Put toothpaste on toothbrush, brush teeth, rinse

2. Address visual attention challenges. Beth gets easily distracted and has trouble with looking on a flat table-top surface for extended periods of time. Typical solutions for increasing visual attention include the use of slant boards and easels. We address some activities through a slant board, but I have found an easel is better for tougher tasks. As shown in the video below, for sequencing we use a magnetic white board table top easel, and I attach magnetic tape on the back of the laminated pictures (you can use clear contact paper or a laminator).
3. Address motor planning challenges. If motor planning is an issue, find a motor plan that works for sequencing and stick to it (and tell all therapists and teachers to use the same motor plan). You will see in the video below we went with boxes for placement and we place the pictures above or below the boxes on an easel.
4. For visual scanning or impulsivity problems, guide the child to slow down and look at all the pictures first.  I have learned a great deal from watching where Beth’s eye gaze is directed, and have noted her getting fixated on certain pictures, stopping mid-scan, not looking before she grabs a picture, etc. To be successful with this task, the child must examine all the pictures first. I usually use a verbal prompt (I say look at the pictures, or if she is really distracted I tell her to look at each picture) and often use a sweeping motion with my hand.  I am very careful to avoid guiding her to the answer with my hand (I stop randomly while sweeping/pointing and randomize placement of pictures).
5. Start with a sequence the child knows and model the task. I use A, B, C and 1, 2, 3 in the beginning of each session to remind Beth what we are doing (shown in video below). For completely new sequences I model the set several times before I expect her to sequence the cards independently.
6. Keep the guiding language consistent at first, then expand to more complex and varied language. I started with saying “What do you first?” (she places first ), “And then?” (she places second), “And then?” (she places third picture). But after a while I realized sequencing is a great opportunity for language expansion once Beth gets the process for a particular set of cards. Then I started varying the language and asking longer phrases. Here are some ideas:

  • “How do you [insert main sequence idea]?  First…then…, then…”
  • “What do you need to do when you want to [insert activity]?  First…then….then….”
  • “Let’s put these in order. First…, next…, last…”
  • “Let’s talk about the story (for books or video screen shots). In the beginning…, in the middle…, at the end…”

7. Reward appropriately and give breaks. You will see in the video we got lucky and only used scented stickers for this round of sequencing, but I keep the reward high for this demanding task. We have used mints, gum, gel clings on the light table, a promise to go outside, and many other things to keep Beth motivated. The video below is a particularly long session for her and in general I give her more frequent breaks. Some days she is just not into the task, so we tray again later or do the task another day.
8. Once 3-step sequencing with custom cards is mastered, consider moving to store-bought sets to expand learning and language. You can work on what the boy, girl, or group is doing in the pictures (work on he is..,  she is.., they are…), teach new processes, find gaps in knowledge, and get ideas for new activities you can do together. For example, if a set of sequence cards shows making lemonade and the child does not understand the sequence due to lack of experience with the process, make lemonade together.
9. Most importantly, observe carefully and think outside the box. Despite Beth’s expressive language delays, she chose to talk during the sequencing activity.  It definitely surprised me, but now I understand that using expressive language slowed her down and helped her with task focus and working memory.  I believe in following my child’s lead in general, but it is especially important during challenging teaching tasks.

Stinky Caterpillar and the Magic Raincoat

Beth in her raincoat  smelling her stinky caterpillar

Beth in her raincoat smelling her stinky caterpillar

At the beginning of our autism journey I read this  piece and I vowed I would never tell Beth to stop hand flapping: http://juststimming.wordpress.com/2011/10/05/quiet-hands/.  I also read that flapping can mean a variety of things and can express happiness, relieve stress, can be a unconscious reflex, or can be an attempt to feel arms and hands that seem disconnected to one’s own body (read through comments here, it is very enlightening http://aspiringdad.wordpress.com/2008/01/30/understanding-hand-flapping-and-what-to-do-or-not-do-about-it/). I believed, and still do, that flapping is a form of communication.  I witnessed this myself when Beth was about 4-5 years old. Beth flapped down low at her waist when she was happy and faster up high by her head when she had pain or discomfort. But over the last year or so, her hands slowly creeped up near her eyes and now she flaps about the same rate and near her eyes for every situation, so it is hard for me to interpret the nuances of her flapping. Another thing that has changed over the years is the amount she flaps. I would say it is at its peak now.  And with a lot of flapping has come a lot of challenges, such as:

  • Flapping while looking down and walking, which prevents her from visually scanning her environment. It is exceptionally dangerous when this happens in parking lots.
  • It is hard for her talk, answer questions, or notice people and activities in her environment when she is flapping. This has definitely led to missed social and learning opportunities.
  • Sometimes it impacts academics. It turns out it is very hard to write while flapping!

Telling her to temporarily stop in the critical situations (parking lots) didn’t work, so I tried telling her what to do (look up, keep looking at the store we are walking to, etc.). The drive to flap was too strong, and she just couldn’t maintain an upward glance.

This spring the flapping jumped way up and I was confused as to why. Then we hit a cold patch in the weather and her coat went back on and I noticed the flapping went down again. The weather warmed a bit, the coat came off again, and the flapping jumped up. I couldn’t really keep a winter coat on her all spring and summer. But then the weather slightly cooled and I had her wear a new lightweight, polyester lined raincoat from Target. The flapping disappeared almost entirely (!).  Why?  Most people say weighted things calm children with autism, but that wasn’t the case here because the raincoat is extremely lightweight. We tried weighted items in the past, including a weighted vest and it never worked for Beth. I have done some experimentation with other light sweatshirts, but the raincoat works best. My guess is the long sleeves that touch her hands and the smooth inner lining somehow stops the flapping. She also loves wearing it and refuses to take it off even if it is warm, so I think it helps calm her. Or maybe she feels more connected to her arms and hands (?) I probably won’t know the answer to this miracle for a long time, but sometimes you don’t need to know why a sensory strategy works. It just does.

While going from our car to the in the parking lot to the mall one day, it was too warm for a coat and for some reason Beth took a toy from the car with her. Since something was in her hands, she was not flapping. Her head was up and scanning her environment and she had a big huge smile on her face while looking around. It was easier to talk to her, easier to direct her to where we were going, and she was much more connected to her environment. A year ago it may have been impossible for her to hold something and walk (she would just drop any item after a few seconds), but now this approach works!

I bought a variety of fidgets at the store and tried them on outings. By far her favorite is what I call the “stinky caterpillar” puffer toy (see it above in the picture, purchased at U.S. Toy). The thing stinks like soap and plastic, but she absolutely loves the smell (the smell itself seems to calm her, not just the touch). One day Beth asked for Stinky while she was writing because she couldn’t calm her hands and it worked. We started using Stinky for circle times on the floor in music class and Little Gym. Stinky goes wherever Beth goes and will definitely go to school with her in the fall. The combination of rain coat and Stinky helps Beth sit better and helps her tune into her surroundings.

I guess my advice from this experience is to focus intently your child’s sensory needs and make constant mental notes of cause/effect. Most times your child will lead you to the answer, and you can help by being a hyper in-tune observer, seizing opportunities, and expanding on observations.

 

 

 

 

 

 

 

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).

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.”