Playground perspective

I keep thinking back to last summer and how different things are now.  Even going to the playground is a totally different experience.  Last year I had to trail her at least within reaching distance to keep her from stealing toys, squashing sand castles and getting into all sorts of trouble.   Now she still wants to go to the playground in the stroller, and she uses is as a kind of home base.  Once she’s out of the stroller, she wants to do her own thing, she does not want me to follow her.  I get to sit on a bench!   She actually pushes me onto the bench to sit.  I’ll admit that I can’t help myself and I usually stand, poised and ready to pounce if necessary.

There is a table with two benches under the slides at our usual playground.  On several different occasions I’ve caught her sitting on one of the benches across from another child (usually a boy) and they are smiling at each other.  And they are really looking at each other, not the boy smiling at R and she’s smiling at the table or something.  One time the boy’s Mom came along and asked him if he had found a girlfriend.  Funny how that one comment helps blur all the nasty ones.

R. has been wanting to bring her stuffed Elmo and other Sesame Street friends with her everywhere.  I insist only two can come with us, and she runs around the playground with whichever two made the cut that day.    I think it looks kind of weird actually, but it makes her happy and she is actually playing with them.  The odd thing is that it doesn’t seem like the other kids think it is weird, it almost seems to make them respond better.  I hope I’m not in for a battle when she goes back to school.

I got E. to take R. to the playground on his own last weekend.  He’s been reluctant to do so for quite a while.  I’ve been talking up what a different experience it is, and I honestly demanded he take her for at least 20 minutes so I could run the vacuum.   They were there over an hour and they both returned in marvelous moods.

Looking for answers

I’ve been looking for a book that goes into detail about child development.   When R. had EI, the therapists spent a long time trying to get her to match pictures in a laminated version of the book Brown Bear Brown Bear.   She was never interested.   They tried several different books.  Finally they changed to a 3D matching program using toys and she was interested and did well, moving quickly on to sorting.  I asked why this was easier and they told me that 3D matching is an ability developed before 2D matching.  I won’t get into my frustration over the wasted time.  I would however like to find some resource that explains why one ability comes before another and how it is supposed to typically develop.

In February, when she had her assessment with the school department she could not (or in some cases would not) stack 6 blocks, do an insert puzzle, arrange rings in order on a post, or string beads.  Now she can do all of these tasks, and enjoys doing some of them on her own, not just for a reinforcer.   I wonder why are certain tasks part of an assessment, and what does mastery of each of them mean in terms of development?  It seems to me that after she learned to match and play with some toys appropriately her receptive language improved.  Is that a coincidence, or are they related?

I recently read the book How Children Learn by John Holt.  It is an older book and not specifically about children with special needs.  It did not actually answer my questions, but I do feel like I learned from reading it.  I’m going to use this blog to store my notes about some of the reading I’m doing.

The main point that the author illustrates throughout the book is that children learn best when they are inspired and having fun, not when actually being taught something in a structured way.   Mr. Holt writes How much people learn at any moment depends on how they feel at that moment about the task and their ability to do the task.

He does mention children with autism in one section and it is worth quoting.  ...much has been said and written about autistic children, children who seem to have withdrawn into a private world of their own, who don’t have or want any contact with the outside world at all.  Arguments rage about how best to treat them.  The conventional wisdom still seems to be that for severely autistic children not much can be done; they can perhaps be trained to take physical care of themselves and meet minimal social requirements, but not much else.  But there have been some astonishing “cures.”  Barry Kaufman in his book Son Rise, describes one that he and his wife effected with their apparently hopeless autistic little boy.  The point I want to make here is that they began their cure, and first began to establish some faint communication with their terribly withdrawn child, by making a point, for hours at a time if need be, of imitating everything that he did.  This was the door or path by which they led him or persuaded him to come back into the everyday world.

No one can ever know exactly why this cure worked.  But it feels right to me.  If I felt that the world was so unpredictable and threatening and myself so powerless that I could not risk myself in that world, but had to make a tiny, safe private world of my own, that outside world might begin to seem less unpredictable and threatening and myself more powerful if I could make things happen in it.

All children want and strive for increased mastery and control of the world around them, and all are to some degree humiliated, threatened and frightened by finding out (as they do all the time) that they don’t have it.  Perhaps autistic children need this control more and are far more frightened by not having it, and so, unlike most children, are not able to struggle patiently until they are able to get it, but instead, again unlike most children, must retreat from the big world around them into a private inner world of their own.

I think that repetitive behaviors, restricted interests and rituals can be seen as a symptom of this need for control in individuals with autism.  I also think  Mr. Holt would have liked Floortime.

The chapter on talking was interesting,  I like what he writes about infants learning to speak:

I now feel strongly that much of the time infants are not trying to imitate sounds at all, but are actually trying to speak, that is to use sounds to convey wishes, feelings and meanings.

R. has been babbling for years now.  The quality of the babbling has been evolving. Now it has all the sounds and intonations of sentences, there are sometimes words I can understand mixed in with babbling.   She will look right at me and babble with an expression that seems to say that she is waiting for a response.   I’ve thought for a long time that her babbling actually meant something to her.    Mr. Holt also writes about children learning to write who write what looks like nonsense but actually consider themselves to be writing meaningful letters or stories or whatever.  He wrote that when each of these children finally realized that no one could understand their writing they stopped and were quite upset about it.  They all did eventually end up learning to read and write properly.  I wonder how this applies to learning to speak and to a child with autism.  I think that R. realizes that we don’t understand her when she babbles.  When I do understand what she is saying she gets this expression of pure bliss at being understood.  It makes me feel bad that I don’t understand more and I wonder if this discourages her from speaking more frequently.

Mr. Holt does attempt to answer this question in regards to typically developing children:

I suspect that early infant talkers… mean to send messages with their voices, as the big people around them obviously do, and they think that these messages are being received. Suddenly, perhaps around the age of one and a half or two, it dawns on them that most of their messages are not being received at all, and that they really can’t talk like other people, but must go through a lot of trouble to learn how.  This may be one of the things that makes two year olds so touchy -they have just discovered that among all the things they don’t know how to do, they don’t know how to talk.  They are bursting with things to say, needs and feelings, and awarenesses but have no way to say them.

We assume that since words are the shortest and simplest elements of language that we learn them first. But it is far more likely that we learn words last.  First we learn the large idea of communication by speech, that all those noises that come out of people’s mouths mean something and can make things happen.  Then from the tones of people’s voices and the contexts in which they speak we get a very general idea of what they are saying,

Reference: How Children Learn by John Holt.  (Merloyd Lawrence, Delta/Seymour Lawrence New York 1982)  Pgs 43, 50, 81, 93

First week of summer vacation

Summer school ended last week and R. has five weeks off from school.  She will have ABA therapy for three weeks.  I kind of envy Moms who plan out elaborate themes and activities for each week.  While I do have some things planned, mostly we are winging it.

I feel like we are making a little progress with going to the playground and other outings.  I’ve just been bringing her in the stroller and she usually wants to get out within ten minutes or so.  She runs back to the stroller, but it seems like she is spending longer and longer outside of the stroller.  Today she spent an hour and half at the playground and I think she was in the stroller for about fifteen minutes and not in a row.

Yesterday we went to the zoo with some Moms and kids from our local Moms club.   I was quite shocked when R wanted to get out of the stroller and she ran to watch the bears with the other (typical) kids.   It seems like she is really noticing the animals now.  Which kind of gives me a clue about what is going on with her.  It seems like something has clicked in her mind and she is noticing and understanding more.  At home she is actually interested in what I’m doing – she wants to play in the sink when I’m doing dishes, join me in the bathroom.   Even when we are at the playground or when she’s at gymnastics she is actually turning to look for me.   Maybe this new awareness is giving her anxiety in some situations.

Inspired by Professor Mother

Autism Blogs Directory suggested that people write about blogs we like.   One of my favorite blogs is the Professor Mother Blog.   I’ll admit I’m partial to finding blogs written by parents of girls with autism.   Her writing and her stories about her family are just captivating.   I’m inspired by how she challenges her children and treats them with honor and respect.  I’m also inspired by her honesty and her ability to look at the bigger picture.    I thank her for reminding me to remember the value of the trip when it seems like the road goes on forever.

The Magic Disc

The fitball disc

I bought a fitball disc for R. recently.  It is very similar to the sitting/balance discs in the therapy catalogs.  It is a little larger and one side has raised nubs and the other side is smooth.   I thought it would be useful for R. to put her feet on to give her extra sensory input.  I also hoped she might stand and balance on it or at least walk on it.

She did not know what to do with it at first and wasn’t real impressed when I sat or stood on it.   I stood it on one end and made it spin, and that became a favorite game. She would let me use the disc to give her pressure on her back or feet.   Then one day I found her happily running back and forth in her room landing on the disc in the middle each trip.  I noticed she had pulled the plug out and completely deflated it.  She wanted to use it flat and she fixed it herself.  I inflated it just a little bit and she has been finding all kinds of uses for it on her own.

She always seems to know exactly which side she wants to use.  She sits in her beanbag or in my lap with her feet on the disc.  She sits on it bottom down, lies down on her belly or back and even rests her face on it.  She puts pillows on top and then lies down or rolls around.  It gets most use as a stomping pad in an obstacle course.  She recently found her old baby changing pad and a wedge that goes under the crib for newborns and added them to the obstacle course.

Fear of open spaces?

We made it to the aquarium for the members hour and it was nice and quiet.  We practically had the place to ourselves.  Lately R. never wants to get out of her stroller when we go places.  She did eagerly get out and started running yelling ishy ishies.  I chased her and insisted she had to hold my hand.    After a couple of minutes her running changed from gleeful to nearly panicked.  She looped around the aquarium at a break neck speed and managed to make her way back to the stroller and said  I want to sit.   Of course we let her.   We walked around for a while and took her to the children’s play room and she was happy to get out of the stroller and play.

We met  friends at the playground.  R. walked very nicely from the car to the playground holding my hand.  When we got inside the playground she wanted to run so I let go.  She ran into the playground and then ran back and forth a couple of times, that same panicked run and look and then ran back to the gate.  She came to get me and pulled my hand towards the handle to open the gate.  I sent her father to get the stroller and a ball.  She then sat in her stroller for about twenty minutes, watching my friend’s daughter play on a merry go round.  She was quite happy, smiling and talking a little.   We got her interested in the ball by giving it to her and chasing after it when she would throw it.  After a while I would leave the ball on a play structure in sight and she would get out of the stroller and run after it and then run back to her stroller.  We played that game for about half an hour.

I think her fear must have something to do with wide open spaces.  I kind of hate to start bringing the stroller to the playground again.  It’s not the hairy eyeballs I get from the other parents.  It is more that I feel like we are making some progress on hand holding and walking in public.  But on the other hand I hate to take away something that makes her feel comfortable.  She will sit and calmly watch the other kids from her stroller and I think there is some value in that.  I also think it will be easier to find ways to coax her out of the stroller than to find non-stroller ways to calm her enough to stay.

We survived her first gymnastics class

Another autism Mom told me about a gymnastics/acrobat school that offers one on one classes to kids with special needs.  Her child really enjoys them, and she considered it like inexpensive OT.  The intake form that they had me fill out led me to believe that they had a good understanding of sensory processing issues.

R. was very good, like amazingly good.  She held my hand and walked from the car to the building – about half a block.  Then we had to go up two flights of stairs to register, and of course she had to wait while I filled out paperwork.  She whined a little and we told her that we would be going to play, and she actually waited.

Parents are not allowed on the “floor”, so we sat on the benches along the edges.   That was a novel experience, just watching.  I was certainly worried how R. would respond to someone she just met in a new and busy environment.

Each section of the room had different equipment – trampolines, balance beams, ladders, all kinds of mats.  Two separate classes were going on, while R. had her session.  I wondered if R. would become distracted or disruptive.  She actually loved watching the other kids doing tumbling and animal walks.

The instructor was very pleasant and engaging.   R. seemed to like her instantly.   She did not follow any specific commands to use equipment.  But she did respond to the instructor calling “R. come here.”    The instructor seemed to be able to easily follow R. around and inject herself into everything she was doing.    R. let herself be rolled around by the instructor and they played ball with two different size balls. And she also allowed the instructor to redirect her when she wandered into the other children’s class.    It was almost like watching chaos in motion.  The two classes rotated around the room and the instructor managed to keep R. in whatever areas were vacant.

We’re going to continue with the classes, at least through the summer. It is just half an hour, once a week.   I’m not sure if R. will learn any real gymnastics.  That likely depends on how long we keep going.  I think it is a good experience for her to have one on one time with someone else in such a fun environment.  I also think that being able to watch the typical kids classes is valuable.

She doesn’t like the farmers market anymore

We’re lucky that R. likes to go out places. As long as she is in her stroller or in a shopping cart and we don’t dawdle too long she is usually content. We used to go to the farmer’s market often last summer and fall, we got out of the habit this winter. We went again a few weeks ago and as soon as we pulled into the parking lot R. started to cry. It was really just yelling, she had no tears. She even said “I want to go!” I really needed some vegetables for the week so we forged on. She used to like to go to the farmer’s market. There’s tasty samples and several bakeries. I bought her a soft pretzel that she usually loves. She ate it but continued to scream. I quickly bought my vegetables and we left. We tried again a couple weeks later and she was still unhappy.

This weekend I suggested we try a different farmer’s market. As soon as we pulled up and she saw the white tents (same as the other farmer’s market) she started to cry. I can live without going to the farmer’s market. I just would like to understand what it is that she doesn’t like. It it not overly crowded or loud. She is so happy in the grocery store that I don’t think it is the sight of vegetables.

What does she ask for?

We have a substitute for our regular ABA supervisor this summer. She asked me to make a list of the most common things that R. asks for by hand leading or using PECS.

I’ve been asking them to help us work on getting more verbal requests. After months of filling in ready set go and one, two three. she is now using these phrases like they mean more or do it. She loves it when I spin this fit ball disk on her trampoline. She’ll lead me over to it and say one, two three. They suggested that we only use those phrases as part of a game and prompt a specific word for each activity. They also said that we should be consistent in using the same words over again.

It is good advice and sounds simple enough. I find that I don’t always know if I’m emphasizing the correct words, or if I am being somehow confusing. Our previous ABA provider did not like to use the word more. They believed that teaching specific labels would lead to better language use in the long run. I can see how there might be some merit to that, but at this point words like more, open, and on would be very useful.

Most common PECS used (non food items)
Music (CD player)
Nesting Monkeys (Can say monkey, but rarely does)
Monkeys in a barrel
Bubbles (can say bubbles, but usually uses PECS)
Letter puzzle
Magnetic letters

Activities that she mands for often by hand leading and putting object in our hands or trying to put our hands on the object :
Join her to play with blocks
Spin disk on trampoline
Play ball (can say Ball)
Race cars (matchbox)
Dress Elmo, Ernie or Dolls (can say Elmo, dress, shoe)
Lay down on bed (occasionally says sit down!)
Lay down and snore (makes snoring sound)
Turn on fan, keyboard, TV
Play keyboard
Open – door, box or bag with toys (just starting to say open)
Write on magnadoodle
Play ring around the rosie (can say ring rosie, but usually indicates with hand leading)
Feed fish

The decline of civil disobedience

R. was never a hand-holder. When all the other almost toddlers were walking around holding onto someone’s hand she wanted no part of it. She did walk a little later than some of her peers, she was 17 months when she first took off on two legs. Very often when I would take her hand and try to lead her she would flop down on the ground flailing and usually screaming. Another autism mom I know calls this civil disobedience.

When we had early intervention I insisted that we get out each day. They did work on hand-holding in public, but when she turned three it was still a challenge. In preschool they do a lot of lining up and holding hands to walk to recess and they take a daily walk around the neighborhood. I had some anxiety over that, but the teacher informed me that R. usually did very well.

It seemed to me like after she started school she was a bit worse about wanting to walk anywhere with me, she wanted to be in her stroller or to be carried. I started making her walk only a foot or two from the car to her stroller and we worked up to walking across the parking lot to the shopping cart. She loves to ride in the cart so that is usually good motivation.

I’m still never sure that she is going to walk appropriately. I’m encouraged because this weekend she walked across a large parking lot, down a short sidewalk, into a store, down the escalator and waited patiently while we got a cart. She also walked from the car down a short street, into and through a restaurant allowing me to navigate her around waitstaff and customers and waited patiently to sit down. It seems like such a small thing, I know kids half her age can do this already. It still makes me happy and does make things easier.