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.

 

 

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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.

Respecting the Stim, Post #3: How Water Stim Led to Swim

With the exception of when Beth was a newborn and she screamed bloody murder at bath time, which resulted in sponge baths for 4 months, Beth has always loved water. Between ages 3-4, Beth’s “obsession” and stim (1) with water seemed to get in the way of nearly all play activities and outings. But over the past 1.5 years, I stopped thinking of water as Beth’s “obsession” and now I think of it as her love and, in the case of swimming, even a gift. In this post I share with you the ups and downs of Beth’s water story. And, as with all the posts in this series, fighting the stim was a fruitless effort, and true progress occurred when we learned to live with her water stim and go with the flow.

Early Love of Water

Beth’s love of water started with swimming classes at 9 months old. She clearly loved the water more than the other babies. “She is so happy in the water! ” the teachers and other parents would say. Pretty soon her love of water expanded into other areas, but at that time water was not a dominant interest or obviously stim-like. It was just fun.

Infant Swim Class

Swim Class

IMG_5041

Exploring Fountains (Longwood Gardens)

IMG_5038

Enjoying the Rain (Longwood Gardens)

First Water Stims & Preoccupations

Although I did not realize it at the time, Beth’s first water stim started at about 2.5 years old with a water table cup (“Blue Cup” as she called it). She would fill Blue Cup with water and run a stream of water over her fingers over and over.  When Beth went to the first preschool, before we received the autism diagnosis and when she was flipping out all the time while there, I brought in Blue Cup and told the teacher it might help her calm down. Let’s just say Beth spent a lot of time running water over her fingers with her Blue Cup at the sink in the preschool room while the other kids were napping on the floor.

Water Table

Water Table with Blue Cup

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Beth and her Blue Cup (Running the Stream of Water on Her Fingers)

We let Beth be Beth back then, so we gave Beth time to play with her Blue Cup at home and went to various locations with water because she seemed so happy in and around water.

The Shore

The New Jersey Shore

Lake Nockamixon

Lake Nockamixon

Then the intensive therapy sessions started from age 3-4. The therapists recommended reducing time with Blue Cup, minimizing stimming, and teaching Beth that she could do other things with water. For example, to keep Beth from walking in the creek at every visit (which was sometimes a problem when the creek was very dirty or when it was cold), we tried replacing getting in the water with throwing heavy rocks into the water.  The idea was the “heavy work” of throwing the rocks and the visual of watching the rocks going in might be a sensory activity that would replace her desire to go in the water. She was mildly amused by throwing rocks for a awhile, but just like all other “replacement” attempts, she went back to craving direct contact with the water. As for attempts to make water functional (watering plants, getting herself a drink, turning on the hose to play with it, etc.), that took another 1-2 years to develop, and seemed to only occur after her need for contact with water calmed somewhat and her joint attention and motor planning improved.

Throwing a Big Rock Into a Her Favorite Water Hole

Rock Throwing at a Favorite Water Hole

After the failed attempts to get Beth to do other things with water, we let Beth get in water and play with it as much as possible again. I even got a therapist to go in the pool with Beth and do some language work. But soon we discovered that we had a bigger problem than Beth wanting to be in the water all the time.

Water Play Sabotaged By Oral Issues

The mouthing issues had ramped up from ages 3-4. As a result, Beth started to swipe water from dirty streams and drink from garden fountains, so we had to limit those activities. My new hope when we quit intensive therapy at around age 4 was that we could swim a lot and it would reduce her desire to drink undrinkable water wherever we went, and then we could do more activities near streams and with fountains again. Also, I hoped to do Floortime sessions in the swimming pool and work on language and interaction. But when we started swimming often, I realized she sneakily drank so much pool water that she became ill with osmotic diarrhea due to the salts in the pool. As soon as the water hit her mouth she would let it flow or drain in because it was sensory heaven to her. There were serious health risks, and all attempts to stop her or replace the behavior failed and often led to tantrums. So, at that point, all water play and outings where she had access to undrinkable water had to be limited. It was very sad that the sensory thing she craved and needed most was being sabotaged by another part of her autism.

The Start of the Water Mouthing Issues

The Start of the Water Mouthing Issues

Going With the Flow

We halted swimming for an entire year in hopes that her pool drinking would decrease with time.  We made do the best we could with a garden hose and sprinkler at home.

Sprinkler Play

Sprinkler Play

At this point, outings were a problem, because she would tantrum for water sources she could not access (duck ponds, pools, etc.) and she would try to drink from dirty water sources at every opportunity. I did my best to choose activities that centered around Beth’s water interest. It made sense in my head that the aquarium should be the ideal place for Beth, because she loved water so much, but she seemed miserable. Then Beth finally got enough language to say “Go in the water!” on an aquarium outing and it hit me. It was like the “Water, water every where” in the Rime of the Ancient Mariner Poem. Putting Beth around tons of water that she cannot get into is like surrounding a man dying of thirst with water he cannot drink. It is torture for her. Especially since we had stopped swimming and she was probably thinking about how much she missed swimming every time she saw a pool or tank of water! It seems obvious in retrospect, but I until that point I didn’t realize how much Beth needed to have contact with water. Over time, surviving trips to places with inaccessible water (tanks, ponds, etc.) was possible with a lot of edible rewards and short repeated visits.

Beth at the Aquarium

Beth Wants to “Go in the Water”(Even Shark-Infested Water)

At this point I started to expand my thinking and observe Beth very carefully. One day while blocking Beth from drinking from a dirty water source, she leaned her head down and did the head dunk thing. And I said, “Yes!  Dunk your head!” At least we could use the head dunk move for places with garden fountains and it was much safer than drinking the dirty water. Over time I have figured out ways to use water sources during an outing as a break and reward (letting her play in misters, head dunk in drinking fountains, head dunk in garden fountains, playing with hoses at friend’s houses, playing in the rain, etc).  Now I carry 2 extra outfits and an extra pair of shoes so that she can get wet if an opportunity presents itself. Sure we get some stares, but I know this is only temporary. Blue Cup mentioned above was a thing of the past this summer, so one day we will visit a place without Beth dunking her head. For now we just need to go with the flow.

Head in Fountain

Morris Arboretum Fountain Head Dunk

Morris Arboretum

Morris Arboretum Stream Head Dunk

Elmwood Zoo Mister

Playing in the Mist at Elmwood Zoo

Back in the Water

At the beginning of this summer (2013), it had been almost a year since we stopped letting Beth swim due to excessive drinking of pool water. We decided to give swimming a try again. It was much better, but we still found ourselves telling her over and over “spit it out” and worrying about her pool water intake. About this time we discovered that if we gave Beth juice half way through swimming and kept her well-hydrated she drank a minimal amount of pool water.  Drinking pool water was still a worry, but much less so.

In July we went on 3-week vacation to my husband’s parent’s house near Traverse City, Michigan.  Their house is right on Lake Michigan, so we thought it would be perfect for Beth.  Although the water was a bit chilly, we thought she would like to walk around in it and dunk her head.  But the first 4 days there were very, very difficult. Beth regressed and bit both me and my husband, had sleep problems more nights in a row than usual, and was very difficult to reason with. She liked walking in the waters of Lake Michigan okay, but something was bothering her. Thankfully, the relatives “up north” had other water-related activities for us to try.

The 4 person jet ski and power boat were winners. She loved going fast.  We sandwiched Beth between two adults to keep her safe on the jet ski. In the boat I had to hold onto her life jacket to keep her from falling overboard, because she loved to lean over the edge and touch the water splashing off the side of the boat.

Beth, Ready to Jet Ski

Beth, Ready to Jet Ski

Beth Enjoying Motor Boating on Torch Lake, Michigan

Beth Enjoying Motor Boating on Torch Lake, Michigan

Feeling the Water

Feeling the Water While Boating

Jet skiing and boating were fun, but the true turning point came when a relative gave us guest passes to a resort so we could use the swimming pool. After swimming regularly again, Beth was pretty much back to herself. I believe Beth’s initial upset was because of the “water, water everywhere” concept again. Looking at all the water in Lake Michigan, but not being able to swim in it because it was too cold, was torture for her!

A Stim Turns to Swim

One day during the vacation in Michigan,  I was playing with Beth in the resort pool and noticed she loved when I went under water.  I would fall into the water over and over expressively and she smiled widely. Then, she just did it…went under the water all on her own. Pretty soon she was going under water over and over and couldn’t get enough of it. Smashing herself into the water was a sensory activity that was stim-like, with a major upside that she did not swallow water when she was underneath! We had an issue with the water burning her eyes, but she was so motivated to go underwater she let me put a swim mask on her (note it is a swim mask without the nose block: http://www.amazon.com/Seal-Kids-Mask-Transparent-White/dp/B00B11MTM4/ref=sr_1_14?ie=UTF8&qid=1379333696&sr=8-14&keywords=swim+mask). Here is a video of Beth during these first days of underwater exploration, with Grandpa doing the “torpedo kid” push.

Over time she has taught herself to swim underwater and can come up for air in between strokes.  I am looking around at other kids who are 5 and she is often the only child her age able to swim underwater. People say, “look at her go,” “wow, she can really swim,” and to their kids, “honey, do that, swim like that little girl.” And I just smile and think, if only they knew how we got here.

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(1) For a definition of stim and other post in this series, see: http://wp.me/p2OomI-PY and http://wp.me/p2OomI-QC

Respecting the Stim Series, Post #2: Spin Thing

Note: For a definition of stim and background for this series, see http://wp.me/p2OomI-PY.

This is a Pop-Onz toy. It is designed to encourage very young children to build. There are two circular areas of the toy’s table where kids can place blocks and watch them spin around. The toy is notable because it is VERY hard to “pop” the building units onto the table, which makes it a terrible first building toy. This design flaw is probably why these toys aren’t made anymore and they can only be found on eBay and in thrift stores. The Pop-Onz toy is also notable to me personally, because it signifies the history of my daughter Beth’s spin stim.

pop-onz

The Beginning of Spin Stim

Beth was about two and a half when she started at her first preschool. Within weeks of starting preschool, Beth’s teacher called my husband and I to a meeting and said she was “very worried” about Beth.  The teacher recommended a developmental evaluation by a medical doctor for diagnosis and a school system evaluation for therapy support. We knew Beth was stressed, but we thought she would eventually adapt. Beth did not adapt as anticipated and we pulled Beth from the school and started intensive therapy at home for autism. Looking back, I realize Beth tried to adapt in her own way.  For example, at the school playground she rocked on a rocking toy and threw wood chips to soothe herself (now I know these are common sensory/stim activities for children with autism, but I was clueless at the time).  And every morning at drop off as I turned to leave Beth at preschool, she ran to a Pop-Onz toy sitting in the corner of her preschool room and pressed the button to absorb herself in the spinning characters.  She was desperately trying to soothe herself.

Fighting the Spin Stim

Since Beth loved the Pop-Onz toy at her preschool, I bought the same toy for home. But Beth seem overly preoccupied with the spinning characters on the Pop-Onz toy. If I would try to talk to her while she was using the toy or interrupt the spinning to show her how to build on it, she would either ignore me, walk away, or get frustrated. I asked therapists what I should do about the preoccupation with spin and how we could use it in play, but no one had an answer. The prevailing view was we had to get rid of spin toys like the Pop-Onz so that we could work with Beth to help her play in a traditional way.  The Pop-Onz toy went into the attic along with other stim toys that were “too obsessive” and we spent years trying to coax Beth to play with us the traditional way. The end result of elimination of stim toys (electronic toys with spinning, music, and sounds) was no real progress with play milestones and no improvement in hand use during play. One day I gave in and ended up right back where I started, trying to use stims like spin (and sound…a topic for the next post) to help Beth develop.

Using Spin Stim as a Motivator

Since I was having no luck building with Beth using traditional means despite trying a variety of toys and approaches, I resurrected the Pop-Onz toy. First we build (sometimes I block the button while we build), then Beth presses the button to have the spin as a reward. Recently I noticed she really likes some of the structures we build because she smiles and flaps a lot when they spin, so she is learning that building different things can be interesting. When Beth was younger, she would have been frustrated because she lacked the hand strength and coordination needed to pop the blocks on the nubs, so I doubt we would have been able to use this toy for building back then. But I believe I would have been able to help Beth develop with easier building sets with spin, which underscores the importance of having appropriate toys that are in line with skill level before attempting to guide the child and expand their play and hand use.

Soon I was looking for other ways to use the spin stim.  Here are some examples of the ways I used spin stim to encourage Beth to use her hands during activities:

I thought it would be cool to try building a translucent marble run (1) on the light table with Beth. Unfortunately the translucent marble run set was too difficult for Beth in terms of building, but she liked dropping the marbles into the big funnels and watching them spin. So much so that she would get very flap happy and then do it over and over. At that point, I just surrendered. There was no way to get around the stim, so I decided to work with it. I thought of Floortime and how I could expand this activity in small ways to help her development. We worked on taking turns, but she quickly bored with that expansion. Then I showed her several times how to drop the marbles in the small funnels in the upper portion of the toy. This may not seem like a big deal, but for her to do something other than drop them in the big funnels to watch them spin was huge.  She was looking up (something she resists), so that was good for her head and neck muscles. She was dropping the marbles into a small funnel and at first she lacked the precision to get them into the funnels and missed a lot. Soon she figured out pinching was the best way to take the marbles from their holder and get them into the small funnels. Pincer grasp, hand-eye coordination practice, looking up during an activity, all while having a good time…score! For the next phase I need to get a marble run set which is easy to put together and has a final structure with a motivating spin as the reward. If you have a suggestion for this type of toy, please leave a comment on this post or my Facebook page.

My friend introduced me to gear building toys, which work great for spin stimmers like Beth.  Here are some examples of Beth and I building with gear sets (2, 3).

A giant gum ball machine in a local ice cream shop was a huge spin stim hit.  Beth learned to put in the quarter and work a handle that was very difficult to turn in order to dispense the gumball down a giant twisty slide in the bottom of the gumball machine.  Normally she would have given up on a handle that difficult to turn, but seeing that gumball spin around and around coming down the slide was very motivating to her.  She could care less about eating the gumball, so she won’t dispense gumballs in machines without the twisty slide.

Inserting Quarter in Gumball Machine

Inserting a Quarter in the Giant Gumball Machine

Turning the (Very Tough) Handle on the Gumball Machine

Turning the (Very Tough) Handle on the Giant Gumball Machine

The Gumball Machine Slide Stim Spin Reward

The Giant Gumball Machine Slide Stim Spin Reward (Well Worth the Quarter Per Gumball)

Spin Stim for Relaxation

In addition to being a good motivator for play and hand use work, spin stim is very important tool for relaxation.  For example, Beth does best in restaurants that have fans running because she can gaze at them to relax.  Also, spin toys have another purpose other than play…they help Beth relax before bowel movements.  The tough part about using stim toys for relaxation is when and how to make them available so that Beth is not using them all day long. Recently I have put the Pop-Onz, gears, and marble run up on bookshelves and I only bring them down if she asks for them or if I think she needs to relax before a bowel movement (or if I want to initiate a building session).

Final Thoughts….

I feel we would have been better off if we had included spin stim as a motivator for play and hand use development from the start of therapy (as long as the building sets were easy and at Beth’s skill level). I do feel the stims have a purpose, and my child’s brain is wired to enjoy the spin. I feel my role is to understand the purpose of my child’s stims, be creative about how to use them help my child develop, and create a balanced approach that includes a time for all activities, including those with stim.

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1. http://www.amazon.com/Marbulous-Translucent-Marble-pieces-plus-marbles/dp/B000XA80XG/ref=sr_1_1?ie=UTF8&qid=1373570748&sr=8-1&keywords=marble+run+clear

2. http://www.amazon.com/Tomy-T6526-TOMY-Gearation-Building/dp/B00000ISEH/ref=sr_1_10?s=toys-and-games&ie=UTF8&qid=1373570788&sr=1-10&keywords=gears

3. http://www.amazon.com/Quercetti-Georello-Kaleido-Gears-pieces/dp/B00000J048/ref=sr_1_2?s=toys-and-games&ie=UTF8&qid=1373570766&sr=1-2&keywords=gears

Respecting the Stim Series, Post #1: A Sticky Situation

Definition of Stim (Urban Dictionary, by Cyndi, H. Apr 17, 2006): 

Stim, stims or stimming is short for “self stimulation.” Almost everyone does it (tapping feet, cracking knuckles, twiddling thumbs), but in autistic people these behaviors are more pronounced and may seem downright strange. Autistic people often engage in stimming when they are stressed, to self regulate and sometimes to express emotion.

Common autistic stims are: rocking back and forth, headbanging (not the music kind), finger flicking/rippling, spinning, humming, repeating words or sounds and complex body contortions.

Living with Stim

Unless you live with autism and stims, it is impossible to wrap your head around the above definition. And even if you live with certain stims, you will not understand the stims of others.  There are common threads of course, but no two people are alike, so the motivation behind stims and the meaning of stims can have astounding variation.

My purpose in writing this series is to share what I have learned about my daughter Beth’s stims. I want to spread the word that stims are not scary, and, in fact, they can be quite informative.  If I had stopped my daughter’s stims, I believe it would have had negative implications (for example, increased stress and conversion to less obvious stims that were harder for me to interpret). To me stim is just a neurological difference, and it is my job to understand her stims and figure out what she is trying to say to me and how the stim is helping her. After I understand the purpose of a stim, it becomes a form of communication from my child to me, and I can sometimes use the stim for her developmental growth.

Over time, understanding and using the stims to help my child has become much easier. Many stims seemed all-consuming in the past and she seemed unreachable while stimming.  But now, at age 5, Beth hears me and responds to requests during stimming, which allows me to join with her in stim-related toys and activities.

So, with the above background in mind, I will start my series on “respecting the stim” with sticky stuff.

Stickers on the Fingers, Hands, & Lips

I tried to use stickers to teach Beth preschool and language concepts when we quit intensive therapy and began homeschooling a year ago. I bought highly motivating sticker books with her favorite characters and was excited to use her “sticker stim” as a teaching tool.  But the idea completely backfired. All Beth cared about at that time was repetitively sticking the stickers to her fingers, hands, and lips. I would try to guide her during the sticker book activity and she was so preoccupied with the stickers, it was as if she could not register a thing I said. I tried to limit the surface area and duration of the sticking, and told her to pinch the sticker instead and quickly directed her to “stick it on the paper” before she could stick the sticker elsewhere on her fingers, hands, and lips. I had marginal success with that approach, and usually Beth just ended up frustrated because I was interrupting her stim.  In my final attempt, I hoped that if we worked with sticker books a lot, the stim would decrease due to desensitization.  After working with the sticker books for hours a day for a few weeks, the sticker stim showed no decrease and I decided using stickers to teach was impossible.

One day a clerk at a store gave Beth a sticker, and I noticed how much Beth loved them and how calm she seemed while repetitively sticking the sticker on her fingers, hands, and lips (the latter always seems to take people aback [“OMG, not on your lips!”], but I just make a joke and brush by the comments now).  Soon I traveled with packs of stickers in my purse, and they were a useful tool to help Beth relax in stores and they kept her occupied while waiting in restaurants. For a long time, her sticker stim was a very helpful tool for Beth’s relaxation, but I was unable to teach her concepts using stickers (or anything else with a sticky property, like glue)*.

Beth Stimming with a Sticker

Beth Stimming with a Sticker

The Sticker Stim Sweet Spot

Recently I was cleaning out a drawer and found those old sticker books. Things have changed a lot with Beth’s stims since we had problems with the sticker books. Is it possible to use them now? Here is a video tape of our recent attempt with a sticker book:

There is still stim with the stickers, and I have to guide Beth to do the activity, but she is engaged and working with me. I like to think we are hitting the “sticker stim sweet spot” in that the stickers are relaxing and motivating, but they not all-consuming. A lot has changed in a year, so it is hard to say if it is the stim effect (or appeal?) itself that is decreasing, or if her ability to filter the environment, integrate senses, and pay attention have increased while the stim effect has stayed the same. Whatever it is, this will be a common theme in this series.  What was once a total preoccupation with a stim with no possibility of interaction is now an opportunity for interaction and learning for us.

I have no idea if this is a common developmental path for all stims for all kids who have autism, but it would be nice to see more research in this area.  If it turns out that stims nearly always calm down like Beth’s did, that information would be very helpful to parents who are desperately trying to reach their young children who are stimming a lot.  Maybe parents can take comfort in the knowledge that the stims will calm and that they can be an important tool for interaction and development in the not too distant future.

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*If I had it to all over again, I would have used more magnet and vinyl play sets when we first started and just avoided the sticky stim during teaching.  I am using these sets now and they are fantastic.  Note: For the Smethport and Imaginetics sets, the magnets are not super strong and you have to be very careful punching them out (and your child or client might try to tear them).

Create-A-Scene by Smethport (do a search for Create a Scene on Amazon for more sets):

http://www.amazon.com/Create-A-Scene-Magnetic-Playset-House-SME7107/dp/B002ZAZK30/ref=sr_1_1?ie=UTF8&qid=1370953827&sr=8-1&keywords=doll+house+magnet

http://www.amazon.com/Create-A-Scene-Magnetic-Farm/dp/B00005C12F/ref=sr_1_12?ie=UTF8&qid=1370953906&sr=8-12&keywords=farm+magnet

Imaginetics Sets (do a search for Imaginetics on Amazon for more sets):

http://www.amazon.com/Imaginetics-M86051-Forest-Friends-Set/dp/B004MN3EKY/ref=sr_1_1?ie=UTF8&qid=1370953951&sr=8-1&keywords=magnet+forest

Magnetic tins example:

http://www.amazon.com/Curious-George-Magnetic-Tin-Play/dp/B003WKTGD2/ref=sr_1_36?s=toys-and-games&ie=UTF8&qid=1370954412&sr=1-36&keywords=colorforms

Magnetic dolls example:

http://www.amazon.com/Melissa-Doug-Maggie-Magnetic-Dress-Up/dp/B000F9IV8Y/ref=sr_1_9?s=toys-and-games&ie=UTF8&qid=1370954079&sr=1-9&keywords=magnetic+dolls

Vinyl Sticker Sets/ Vinyl Wall Clings / Colorforms sets (just a few examples, more on Amazon):

http://www.amazon.com/Melissa-Doug-House-Reusable-Sticker/dp/B004PBLP5O/ref=sr_1_1?s=toys-and-games&ie=UTF8&qid=1370954166&sr=1-1&keywords=colorforms

http://www.amazon.com/Melissa-Doug-Vehicles-Reusable-Sticker/dp/B00B3U7SMO/ref=pd_bxgy_t_img_z

http://www.amazon.com/Pomegranate-Charley-Harpers-Sticky-Critters/dp/B00AL3IVSY/ref=sr_1_1?s=toys-and-games&ie=UTF8&qid=1370954278&sr=1-1&keywords=vinyl+sticky+critters

http://www.decoratetogo.com/rmk1384scs.html

http://www.amazon.com/Colorforms-Games-Fancy-Nancy-Party/dp/B001SOZE12/ref=sr_1_37?s=toys-and-games&ie=UTF8&qid=1370954469&sr=1-37&keywords=colorforms

http://www.amazon.com/University-Games-77953-Silly-Stick-Ons/dp/B00000IZW2/ref=sr_1_1?s=toys-and-games&ie=UTF8&qid=1370954495&sr=1-1&keywords=colorforms+silly+faces

Musings on Autism and Attention-Deficit/Hyperactivity Disorder (ADHD)

Beth was diagnosed with autism at nearly 3 years old. ADHD was not mentioned anywhere on her evaluation report.  Which made sense at the time, because her diagnosis was based on the DSM-IV manual, which did not allow for an additional diagnosis of ADHD if a diagnosis of autism was given. With the release of the DSM-V manual and a change to the ADHD criteria, a diagnosis of autism is no longer an exclusion for an additional ADHD diagnosis (http://www.dsm5.org/Documents/ADHD%20Fact%20Sheet.pdf).  To read more about this, see this great post by Autsim and Oughtisms – http://autismandoughtisms.wordpress.com/2012/10/29/change-in-the-relationship-between-adhd-and-autism-in-the-dsm-5/).

I recently had an “aha” moment. I think Beth has ADHD, and in many ways ADHD has a bigger impact than autism does when we homeschool. In this post I want to describe how I came to this ADHD realization through the example of Beth’s struggle with puzzles.

Puzzling Problem

Beth Working on a Dora Puzzle (Reference Image of Completed Puzzle Taken and Saved on the iPad)

Beth Working on a Dora Puzzle (Reference Image of Completed Puzzle Taken and Saved on the iPad)

Remember my puzzle post (https://fumblingthruautism.wordpress.com/2013/01/21/from-the-ipad-to-the-real-world-puzzles/)? Converting iPad puzzles to real-world versions was a huge step, because Beth stopped hating puzzles and would do a puzzle with me without a complete meltdown.

The following is the good news about puzzles:

  • Beth’s filtering of sights and noises in the home environment is much better. For example, she no longer stares at the light seeping through the mini blinds or fixates on motors and sounds around the house (refrigerator, freezer, and heater motors in the house, planes flying over the house, lawn mowers outside, etc.).
  • I let Beth stand for a long time to do puzzles, until one day she decided on her own to sit. I put a weighted vest on her recently, and it seems to help her sit still. Now she can sit and do several puzzles.
  • Beth’s fine motor skills have improved, so her puzzle piece manipulation is very good.
  • Beth can follow my verbal instructions if she is having trouble (for example, if I say “turn the piece more” or “try another piece” she understands and takes the direction).
  • I verbally guide Beth based on color when she gets stuck, so puzzles with more color variation work best.
  • Taking a picture of a completed puzzle with the iPad and using the image for reference is becoming helpful to Beth.
  • If Beth knows the picture very well and really likes it, she does the puzzle more independently.

The frustrating news is she still can’t do puzzles independently. Even simple 6-piece puzzles. We have been doing a couple puzzles each day (with lots of oral rewards, praise, and also in a Floortime cooperative style), but progress is slow.

“I Can’t Do It”

Last week we were working on a puzzle and Beth said in a matter of fact way, “I can’t do it.”  Beth had used that statement one other time while doing fine motor work at an Occupational Therapy (OT) session a couple weeks ago.  I honestly thought I heard her wrong at the OT session, but this time it was crystal clear. First of all, that type of verbal statement is complex for her. It surprised me that she used the pronoun correctly, a contraction, and made a complete sentence. No one ever said anything like to her, so it is truly remarkable. But it is also heartbreaking. Her confidence is low and she is well aware that I want her to do a puzzle, but she is not able to do it. I told her I know it is hard, but I she can do it, and I can help her through it. But inside I knew we had to make a change in our approach yet again. We were missing a piece to the puzzle problem.

Just Slow Down

What happens if I let Beth do a puzzle without any guidance? Well, she grabs one piece in one hand, one in the other, starts shoving pieces in the puzzle board in a frantic way. She doesn’t check for corners or edges, she doesn’t try find the next piece to build off of a piece that is already in the puzzle, she won’t reference the picture, and on and on. The underlying problem is that she is working without thinking. It is not that she doesn’t understand how to do it, she can do quite well with some relatively minor guidance. She just can’t slow down. And this is a problem that I keep running into with her. Here are a few more examples:

  • I am teaching her to use Proloquo2Go on the iPad, a “talker” where she presses the buttons as a means of communication. Our biggest hurdle is that she impulsively presses the buttons without taking the time to examine the options, much as I described in this iPad app post long ago (https://fumblingthruautism.wordpress.com/2012/12/20/preschool-with-the-ipad-listen-think-poke/).
  • While cutting along a line, she rushes as fast as possible.  If I introduce a slight curve at the end of the line she blasts right by it and keeps cutting.
  • The girl can’t sit still. She just can’t. Is that autism?  Or is it ADHD?

Who Cares About Labels Anyway?

I know, we could argue about the traits of autism, the parts of the brain affected, executive function, and how that can explain the ADHD traits and blah, blah blah. I can see the logic in those arguments. So why should I care if she has ADHD or just autism?

I care because all this time I was thinking it was her autism that hindered her learning. I was thinking maybe she didn’t understand what I was trying to teach her or why she should care, or she misunderstood my words due to language delays, or she had fine motor barriers, or she had a sensory issue that interfered with her ability to concentrate and sit still. Yes, she had all those problems, but with homeschooling we have knocked out the sensory issues and now her fine motor, receptive language, and ability to follow directions has greatly improved. In our home, she can sit long enough to do a task now, the joint attention is manageable, and stimming is at a minimum. If I run down the list of ADHD traits, those are the characteristics that are our biggest hurdle. And if I think of the problem that way, my focus is different for homeschooling.  Rewards, praise, and guidance is centered on trying to slow things down due to her impulsive nature. Which is much different giving rewards, praise, and guidance just to get her to complete the task. So, I am going to try this new way of thinking, work on helping Beth manage her impulsive tendencies, and see where it leads us.

Butterflies

A few days ago, my husband, Beth, and I pulled up to our house after grocery shopping and I heard the familiar request from Beth in the back seat. “Drive, drive, drive!” she insisted. Hubby unloaded the groceries from the car and I took Beth for a little spin.

Driving in the car with her favorite music blasting is a sensory passion for Beth. She loves to watch objects move by, feel the sensation of driving, and hear the music as it surrounds her inside the car. I recently made Beth a new playlist, and her favorite track is a song called Butterfly by Alex & the Kaleidoscope Band (1), because it has deep, full acoustics. We were driving around the back roads in farmland near our house, listening to the Butterfly song over and over, when Beth exclaimed, “I want to see the butterflies!”

Huh? I had her repeat her statement, and again she exclaimed, “I want to see the butterflies!” She has never asked to see butterflies before. Beth showed mild interest in a couple butterflies outside our house last year, so I went to great lengths to expand on this interest. Last summer I took Beth to butterfly houses at nature centers and showed her butterflies emerging from cocoons in our own butterfly house (http://www.amazon.com/Insect-Lore-Live-Butterfly-Garden/dp/B00000ISC5/ref=sr_1_1?ie=UTF8&qid=1365436873&sr=8-1&keywords=butterfly+house). Last May I even took her to a butterfly field, shown in the video below, and I caught a few butterflies with a net and released them in the car so that Beth could see them up close (2).

Beth didn’t seem impressed with any of our butterfly adventures. But here we were a few days ago, driving by the field where I took her to see butterflies one time 10 months earlier, and she is insisting, “I want to see butterflies.” And all I could think was, damn, you never know what makes an impact.  That is the wonder and the frustration of autism.

This brings me to a core question that frustrates me on a daily basis. How much do I push Beth to do things that, on the surface, she doesn’t seem to appreciate, given that she can clearly expand her world with such “parent-led” activities?  As much as possible I try to use Floortime, which means I let Beth initiate activities, follow her leads and interests, and use internal motivation to gently guide her up the developmental ladder. It makes sense, because following her lead is the path to least resistance and it is the most respectful way to relate to her, given our completely different neurological make-ups and the communication gap. But sometimes I use more of an applied behavior analysis (ABA) approach, where I initiate the learning task and may even use external motivators to achieve a specific goal. And occasionally, ABA has led to self-initiation of the activity later so that I can do more of a Floortime approach with her to expand the activity even further. Clearly there is a balance in using child-led and parent-led approaches. Applying this idea of balance to the butterfly situation, I took Beth’s mild interest in butterflies and I used parent-led outings to expand her experience with butterflies. It took awhile for her to express her further interest to me (10 months!), but I am so happy she was able to tell me what she was thinking as we were driving by that field.

So, even though Beth would rather just drive in the car and not end up anywhere in particular most of the time, we will be going on nature hikes to expand her world again this spring and summer. Outings are tough for her, especially if the place is not familiar, if there is a lot of walking (she tires easily), or if there is water that she is not allowed to jump into. But, as you can see from these pictures from last year’s nature outings, which are set to Beth’s Butterfly song, I believe it is worth it in the end (3).  I will consider the nature outings an ongoing lesson in adaptation and communication for both of us.

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1. You can catch Alex and his band in the Philly/NJ/NJ/NY area.  His music and concert dates are here: http://www.kaleidoscopesongs.com/

2. The road next to the butterfly field had a small shoulder and was very busy, so it wasn’t safe for Beth to exit the car.  I released the butterflies back to the field once we were done observing them.

3. Locations in the photo collection: Evansburg State Park, Peace Valley Park, Morris Arboretum, Tyler Arboretum