Beginning Math Adventures on the Spectrum

I remember a little over 2 years ago when I started homeschooling Beth, I couldn’t wait to jump in and start working on math. She liked numbers. She even liked counting. I loved math. I even had experience in my college days, where I worked as a math tutor for adults who had learning disabilities. How hard could it be?

Boy was I in for a surprise. Teaching Beth math was harder than teaching Beth to read (see my previous post on reading here: http://wp.me/p2OomI-1jf) due to motor planning and visual scanning challenges and a puzzling prosody issue that sabotaged counting.

Rather than rehash the millions of things that failed, I am going to focus on what I finally figured out after endless hours of trial and error. This is not all-inclusive or it would be a very long post, but shown below are some of the methods and materials I used to help Beth achieve early math goals.

Counting and Number Recognition

I used a pocket chart for beginning counting because the numbers are bigger and easier to point to and are organized neatly in rows and the information is presented near eye level and vertically, which reduces the motor planning and visual scanning demand. After hours and hours of lightly touching her hand so that she would move over to the next number and coordinate counting with pointing and endlessly prompting her to find the beginning of the next row, this is where we are:

I would say the above is an exceptionally good clip. She usually makes the occasional coordination error moving from one number to the next or moving down to the next row, but for the most part she’s got it. So that means she knows her numbers 1-40, right?

Wrong. A few months ago I isolated the numbers using flashcards and realized she had a huge problem. She could not recognize numbers past 10 reliably. She tended to look at part of the number (e.g., would say “2” if she saw “12”) or had trouble visual scanning and reading a number from left to right (e.g., would say “21” if she saw “12”). In addition, we had some expressive language problems (or rigid stuck thinking problems?) with the teens, because she so wanted 11 and 12 to be “one-teen” and “two-teen.” Finally we had the problem if I worked on teens only or 20-29 only, for example, she would get stuck on what we just worked on and make a lot of expressive language errors. It was a mess. So while it looked as if she knew how to read numbers 1-40, she actually memorized the pattern on the pocket chart and was probably just looking at the last digit while she was reading off the numbers.

To address these issues, we used tactile cards (like sand paper cards, but softer texture http://www.amazon.com/Carson-Dellosa-Education-Textured-Touch/dp/B00D5T3EFQ/ref=sr_1_5?ie=UTF8&qid=1412284331&sr=8-5&keywords=1+to+30+tactile+cards) and I had her trace the numbers and say the names out loud. Also we practiced with flash cards or by reading random numbers from the pocket chart, and I had her drag her finger from left to right, much as we do with reading, to help her visually scan the numbers from left to right. For Beth, it is best to work on many numbers at once (at the very least 1-30) to prevent stuck expressive language and to review often (we do at least a weekly review). We have made a lot of progress, but as you can see from this video she still gets tripped up sometimes:

 

Counting to a Specified Number

The kid just would not stop counting! I would say, “count to 4″ and she would blow by 4 and continue on. I tried everything…holding stop signs, hand signals to stop, putting my finger on her lips, having her say “stop” or “shhhhh” after she reached the last number. Nothing worked…for YEARS. Then one day about a month ago I was so frustrated I started jumping up and down like a mad woman and being obnoxious about the way I counted. And…she stopped on the right number. It was miraculous. But why?

It turns out my kid has a prosody problem…she says all her numbers with the same tone and emphasis usually. Now try doing that yourself right now (no really reader, do this)…count to any number and try to keep your voice exactly the same even on the number you are supposed to stop at. It is hard to stop, isn’t it?  I think it is simply Beth cannot do naturally what most of us can do…inflect her voice on the number where she is supposed to stop counting. Here is a good example where I am holding up cards with numbers on it:

Now we are moving towards counting with counters and stopping. For years I thought she just wanted to fill out ten frames due to some sort of compulsion, but now we are making progress if we work on emphasizing the last number. Here is a video with a magnetic ten frame set  (http://www.amazon.com/Learning-Resources-Giant-Magnetic-Ten-Frame/dp/B00AQURHDW/ref=sr_1_1?ie=UTF8&qid=1412289533&sr=8-1&keywords=magnetic+ten+frame) and although you cannot see it in the video, there were 10 counters on the table and she stopped counting on her own:

 

Number Ordering

We tried number ordering exercises with the pocket chart, but even that was too much visual scanning and motor planning for Beth. My friend introduced me to these Lakeshore Learning puzzles for sequencing numbers and letters (http://www.lakeshorelearning.com/product/productDet.jsp?productItemID=1%2C689%2C949%2C371%2C917%2C742&ASSORTMENT%3C%3East_id=1408474395181113&bmUID=1412289161487 , http://www.lakeshorelearning.com/product/productDet.jsp?productItemID=1%2C689%2C949%2C371%2C928%2C517&ASSORTMENT%3C%3East_id=1408474395181113&bmUID=1412290502035,  http://www.lakeshorelearning.com/product/productDet.jsp?productItemID=1%2C689%2C949%2C371%2C920%2C724&ASSORTMENT%3C%3East_id=1408474395181113&bmUID=1412289197133 , http://www.lakeshorelearning.com/product/productDet.jsp?productItemID=1%2C689%2C949%2C371%2C920%2C723&ASSORTMENT%3C%3East_id=1408474395181113&bmUID=1412289211002). I was skeptical Beth would be able to do it, but because the motor plan is so easy (all work is 2D, just slide the pieces into place), it was a success. It was nice to know that she can order numbers after all with the right accommodation. In case you are wondering if she is just making the picture…no she isn’t. She doesn’t even look at the picture until the end so it is more like a reward. Referring to a picture while putting pieces of a puzzle together is still very hard for her, even after doing puzzles with her for endless hours.

 

Patterning

I am not familiar with the research supporting the need for it, but completing patterns is a common goal on IEPs. I guess it is some indicator of logic ability. Beth failed the patterning portion of the IQ testing for K, because the tester wanted Beth to pattern on a blank piece of paper (she needs at least boxes drawn in for placement), Beth wasn’t interested in the materials, and expressive language issues got in the way.

I have found that she absolutely must have boxes on paper or containers for placement and using very familiar favorite items that she has heard receptively in videos many times is helpful. It is crucial for her to say the items out load and to point to keep her focus and to keep track of where she is. It also helps Beth focus if she is guided to build the initial pattern. It is still hard for her, but it is possible with these accommodations. With more effort, I have been able to get her to pattern non-preferred things like colors and shapes, but getting that expressive language out is a lot harder for her. This Lakeshore Learning Patterning Tray works great (http://www.lakeshorelearning.com/product/productDet.jsp?productItemID=1%2C689%2C949%2C371%2C897%2C952&ASSORTMENT%3C%3East_id=1408474395181113&bmUID=1412287383169) for patterning manipulatives. I put her patterning tray on her slant board, which helps ease the visual scanning demand and helps with visual attention. In the videos below I used party confetti with her favorite Sesame Street characters and Halloween erasers from the dollar stores (she has a favorite Halloween video with ghost, bat, witch, pumpkin, etc so those words are easy for her). The erasers are great because they are thick and easier to pick up.  These videos show us working through AB patterning, ABC patterning, and missing items within a pattern:

 

Worksheets (Finally!)

This past summer we moved away from manipulatives and tried the first chapter of Go Math. Go Math is an example of curriculum that has a very nice layout for kids like Beth…not a lot on a page, clear boundaries between sections, and ten frame boxes for counting.  Accommodations would still need to be made if this program was used due to Beth’s language and motor planning/visual scanning challenges. For example, the word problems are too hard for her due to language issues, she would need magnetic counters because she uses a slant board and the counters were sliding everywhere, she would need to circle things rather than fill in or draw squares, she would need to use plain counter blocks instead of snap together blocks, sometimes I have to block off certain sections of the worksheets to help her focus, and I often use a sweeping motion over choices to help her visually scan. Counting with her finger by pointing and then picking up the pencil to write in numbers was a motor planning nightmare. So I prompted her to not put down the pencil and circle items to count them instead. When she writes numbers I try to give her a pass on writing…if it is legible at all I accept it because she tends to get frustrated with handwriting corrections. Here is a clip of a Go Math page:

 

 

 

 

 

 

 

 

Reading Adventures on the Spectrum

It was a rocky road to reading, but last night Beth was all smiles while reading sight word books with me. I wanted to pinch myself. She is reading and she likes it! Wooooohoooooo! How did we get here?  Glad you asked. Here is my video blog on our reading adventures (and misadventures):

What Made Beth Stumble While Reading

-Not having appropriate set-up while reading (needs book upright, appropriate seating or lying down while I hold the book up for her, see this post for details http://wp.me/p2OomI-14s)

-Fancy font (like “a” and “g” instead of plain font that looks like a hand written letters)

-Small font

-Words too close together

-Using just her eyes to guide her reading (she needs her finger to help guide her eyes)

-Multiple lines of text

-Long sessions (visual scanning is hard work and short sessions are a must)

-Working on the same books over and over (leads to guessing and stuck expressive language)

Products That Worked for Beth

-Sight word readers that addressed all the above stumbling blocks.  The best books for her were the Lakeshore Learning non-fiction readers because they had engaging pictures and little pictures for the harder words, which reduces frustration (Lakeshore sight word books, level 1, non-fiction , Lakeshore sight word books, level 2, non-fiction ).  These other sets are also good: Scholastic sight word readers and Harcourt Trophies K readers .

-Weekly Flashcard reviews. We used these: Sight word flash cards

Samples of Beth Reading:

 

 

 

 

What Will You Do While Kiddo’s in School?

 

1st Day of Kindergarten

1st Day of Kindergarten

Beth started Kindergarten in public school today (after I homeschooled her for 2 years and held her back a year). Now I have a staggering 3 hours to myself every week day morning. About everyone I know has asked me what I will be doing with “all that time.” Well, a lot of things have fallen by the wayside, so the options are endless. Maybe I could…

Use one of these…

 

…to clean this:

Sample of crap stuck to my floor

Sample of crap stuck to my floor. Stretch goal: clean the floor more than 1x a year.

Use one of these…

shovel

to shovel out this:

Sample of crap on the floor of my car

Sample of crap on the floor of my car.

or this:

This was once my pantry

This was once my pantry, and it would like to be a pantry again.

Use one of these…

The little used dresser

My neglected dresser

to store these:

Hey, maybe I will score a couch too if I put the laundry away.

Hey, maybe I will score a couch too if I put the laundry away.

Use one of these…

dust mask

to dust my house (since I am highly allergic to house dust….no, really I am):

Representative dust sample

Or I might get really crazy and use this…

gas mask

to tackle that pink smelly stuff in my shower:

Ewwww....

No words for this, but “Ewwwww….”

Did I make any headway on the above on this first day of school? Nope. Nada. Zip. Instead I did this…

Envelope stuffing for school with other moms who weren't ready to let go

Envelope stuffing at school with other moms who weren’t ready to let go.

and this…

IMG_1835

Go me. 3 mile walk in the park while fielding texts and phone calls from concerned family members and friends. Yes, I am fine…

Forget the housework. Sure I will do more than I have, but I am focusing on connecting with friends and working towards a healthier me. That trumps Cheerios on my car floor and pink moldy stuff in my shower any day.

Aiding Beth at Summer Camp

With kindergarten fast approaching in fall, I started to panic. Other than short 1-hour gym and music classes, Beth hasn’t been in a school-like setting in a long time (the last time was at age 3-4 in a preschool). My friends were posting about summer activities and camps on their Facebook feeds, which got me thinking about camps to get Beth ready for school. Three minutes down the street there is a summer camp and they boasted about outdoor time and their swimming program, which Beth would love. So on impulse I called.

Making the Call

The conversation went something like this:

Me: Hi. My name is Tammy. I have a daughter who is 6 and I think she would love your summer camp. But she has autism and would need support while she is there.

Owner: We have other kids with aids and therapists who come in for sessions. She is more than welcome, but we only have openings in the 3-4 year old group.

Me: Actually, that is about where she is socially, so maybe that is a good place for her. (I am thinking, there are openings left? Now I have to think of a way to convince her it is okay for me to come with Beth. I really should have thought through the details.)

Owner: (Silence)

Me: Um, you actually know us. We started out in your school when she was 2 and you helped identify her autism. Then we took her out of your school after a brief time there due to her anxieties and the need to do intensive therapy at home. Do you remember Beth?

Owner: Yes! How are you guys?

Me: Well, it has been a long road. She didn’t respond very well to the intensive therapy techniques, so we did private therapies and I ended up doing a lot of direct teaching myself.

Owner: Yeah, sometimes it takes a long time to find the right approaches.

Me: Because I work with her a lot myself, we have a unique situation and I am essentially Beth’s aid. I aid her at Little Gym and a Milestones in Music Class and it is going very well. Would you mind if I act as her aid? (Way to work in the precedent.)

Owner: Well….we have never done that before, having a parent act as and aid, but we can certainly give it a try. (What? Really? She actually said yes?)

Me: Okay, yeah, let’s just try it. She went to another preschool at 3-4 with an aid and was not disruptive with support, so I don’t think it will be an issue. But if for whatever reason it is not working out, just let me know and I we will leave with no hard feelings.

So that is how we got into camp with me as her aid.

I am happy that report that the place that once was a source of great pain to me (I wrote about that here: http://wp.me/p2OomI-1gp) is now a source of happiness. No longer will drive by the school/camp and feel like I am going to cry. But there were a few times in the beginning where I thought I made a terrible mistake.

The Struggle

Beth was quite stressed in the first couple of weeks of camp and it took me awhile to figure out how best to aid her. It didn’t help that we were in her old classroom, which was a source of stress by association for her. I know she remembered the class. She said at one point, “sit on the star!” through her whining. I was in shock. She used to be the star shape back when she was 2, but she was assigned a different shape for camp. The shape tells each kid where to sit, what towel to dry hands with, what cubby to sit on when waiting to go outside, what place mat to use, etc. She remembered her shape and her teacher telling her to sit on her shape 4 years later. I think I said to her, “You are sad now, but it will get better.” To myself I was I was wondering if Beth would make it through her anxiety to enjoy the camp.

Small Steps to Success

Fortunately, she pushed through the stress, and she enjoyed camp after a couple of weeks.  Her favorite parts of camp were play yard time (which was a huge field with swings, natural and man-made play equipment, and live animals behind the fence bordering the play yard), swimming, play-doh, and painting (not surprising-all sensory!). In the classroom she struggled with the free play period the most, because she didn’t understand what to do or where to be.  I eventually figured out she was most comfortable sitting in a chair at a table rather than the floor (I guess the chair grounded her, made her feel safe), and she needed to be kept busy and given lots of rewards to participate. As time went on she expanded her participation in the classroom in small, but significant ways. For example, she learned to do floor puzzles and food kits (the ones that go together like a puzzle) with the other kids, and she will happily play with those toys at home with me now.  I think it was invaluable for her and for me see how other kids play at the 3-4 year old level. I am not sure who learned more, me or Beth!

Pretend food was all the rage in the 3-4 year old classroom. She just stacked the fake food at first, but I guided her to put them together and pretend to eat them with the other kids.

The best part of camp was definitely swimming (it took awhile for me to convince them she could swim and did not need to stay on the shallow end)

For Beth, the best part of camp was definitely swimming

Cruicial Sensory Discoveries

While at camp, we experimented with a lot of fidgets, oral rewards, scented things, etc. The best discoveries were mint chewing gum, scented fidgets/stickers, and icy seltzer water breaks.  The scented bean bags and stickers (shown below) were popular not just with Beth. The whole class was after me for them! How many times did I hear, “Can I smell? Can I have one?” Gum paid a crucial role, allowing her play with play-doh instead of eat it and helping her sit through a 1-hour (!) magic show.

Thank God for gum. Now she can play with play-doh instead of eat it.

Thank God for gum. Now she can play with play-doh instead of eat it.

Small Victories with Socialization

I remember someone saying to me that a good aid will make friends with the other kids, because then the other kids will be drawn to the aid and the aid can steer the kids to interact with the special needs child. So I was silly, fun, listened to everything they said, and gave them my full attention when they talked to me. Then I looked for opportunities to have them interact in small ways with Beth. Each small, but important, interaction victory was key at first (I even bribed her just to stand next to the kids while watching a horse roll in the dirt, that is how small it was at first…just stand and look at something with the other kids and you get mints!).

Eventually I started getting creative (well, as creative as an engineer in a preschool camp can be). For example, Beth liked to climb up on a play structure to look at the trees. I started calling the structure “The Mountain” and told Beth to roar like a lion (something she likes to do). The other kids came along and I gave them some attention, then they asked what she was doing. I said she is playing “Lion on the Mountain” and they joined in.

Beth on "The Mountain" (she loved to go up there and look at the trees, so I encouraged other kids to play "Lion on the Mountain" with her)

Beth on “The Mountain”

A Big, Huge Victory with Socialization

In the latter half of camp, something unexpected happened. A little boy, I will call him Bobby but that is not his real name, started asking to play with Beth. It was hard to get a back and forth going, so I had them share her sensory toys, take a few simple turns, etc. At one point when Beth was struggling and I was trying to be firm with Beth, Bobby, the gentle soul he was, said, “I just want to help her!” Bobby gave her hugs, would swim over to Beth in the pool just to say “Hi” and would say, “I love you Beth” out of the blue. And for the first time ever with any school-like situation, Beth would, in her own way, talk about a kid at home. She would say, “Bobby!” while smiling and laughing. I would ask if she liked him and she would say yes. When I asked if she wanted to go to camp to see Bobby she would smile and say, “Yes!” excitedly. It was a breakthrough for her and it was so wonderful I was there to see the whole progression of how the friendship unfolded.

Final Thoughts on Camp

We went to camp for 6 weeks, 3 days a week. I am really going to miss it, maybe even more than Beth! I slipped a note to a couple of the parents in hopes that we could do a play date (If you are one of those parents and are reading this…call the number on the back of my card!).

I am still nervous about K, because camp was sensory rich and in many ways all the sensory activities helped her cope. They won’t have swimming or outside time in her morning K class (sadly, they don’t go outside much anymore for K at her school). But I did the best I could to prepare Beth by putting her in a classroom and trying to find things Beth could use to cope at K (fidgets, oral aids, etc.). There is nothing left to do but transfer the knowledge and pray and hope.

See, Beth can smile in a classroom

Proof that Beth can smile in a classroom

 

 

 

 

 

 

 

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.

Yes, I Get Down Too.

On my blog, I try to focus on the positive as much as I can. I prefer to write about the good things or the solutions we have found. But the truth is I feel crappy lately. I am finding it hard to bounce back like usual. Let’s see, I wonder why I have been feeling this way. Maybe it has something to do with what has been going on the last few months…

  • 9 evaluations for Kindergarten.  It really, really sucked. Enough said.
  • All the statements about “self-stim” and “very low” this or that on the evaluations.  Yes, I knew it, but having it shoved in my face is not a picnic.
  • We pushed hard for inclusion, thought we had some inclusion put in place at the start of school, only to have the district back pedal on it.  I just signed the damn IEP anyway…fine, who knows, maybe a slow transition to typical K inclusion for parts of the day are best. We asked to meet 2 weeks after school starts to argue about it then, because it was clear the team just wanted to get on with their summer vacation. Anyway, Beth’s teacher has not been hired, and that probably matters more than the inclusion plan right now. Which brings me to the next stress point…
  • Talking to the professionals at the school did not make me feel better. I tried to explain my kid’s autism and her unique learning/visual scanning/motor planning issues to everyone during the eval process and when I toured the school. I got confused looks most of the time. The exception was the speech therapist, but I just learned she will not be at the school next year. Add to that, I have not met Beth’s teacher yet because she has not been hired. I will get to meet her the week before school starts. All I can do is pray that Beth’s mystery teacher is a champion collaborator who wants to hear all I have learned while teaching Beth the last 2 years.
  • Going to PT and OT therapy up to 3 times a week, only to have them discover what I have already discovered. It was clear in the evaluations everyone thought Beth needed more PT/OT, so we started up again with those therapies (30+ min drive each way, so 5-6 hours of time a week).  While I have learned a few nifty approaches, those aha moments are dying out and she is not progressing any faster than when I worked with her on my own. But I am sticking with OT/PT longer this time, on the off-chance it makes a difference and because Beth loves the gym part of it. Also, I learned through the school eval process it is good to have outside professionals involved to back me up and document things. Sad, but true.
  • Being an aid to my kid at camp and classes is great, but I hate to watch her struggle.  Being an aid to my kid has been a phenomenal experience and I don’t regret it. But it is still hard to stuff the feelings down sometimes when your kid is so obviously delayed and very different from other kids.  Stuffing those feelings is zapping my energy and while I think going to camp is probably one of the best things I have ever done for her, I can’t wait for it to be over. Only 8 more days over 3 weeks to go…yes I am counting down the days.
  • The public is getting to me. Beth often stands out now when we go places. As I wrote before (http://wp.me/p2OomI-1gf), warmer weather means she can’t wear her coat now and so there is more flapping. Plus Beth is really, really big for her age, so she looks older than 6 and people try to converse with her more now. Add to that a myriad of sensory seeking and processing difficulties outdoors and in new indoor environments and she looks much less connected when we are out verses at home. The public just doesn’t know what to do with all that, and they tend to say the wrong things, look away, disengage, feel uncomfortable, over analyze, etc. Again, I don’t blame them, and I do what I can to explain and facilitate their interactions with Beth, but it can get me down sometimes.

I am sure I am missing something above, but you get the picture. Last night I decided it was time to do something about my foul mood. After camp is done (mid-July) we are getting the heck out-of-town. I canceled most summer activities and we will head to places with water to re-group and decompress.  Beth and I both deserve some fun after that last few months we have had.

Beth Throwing Heavy Rocks in Her Stream

Beth’s New Hobby…Throwing Heavy Rocks in a Stream Near Our House

 

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.