Visiting at recess

We visited R. at school during recess.  She was sitting with some other students and an aide playing with a dollhouse when we arrived.

She was very happy to see us and made sure we remained close by the entire time.   She sat on a tricycle and moved around with her feet.   E. tried to get her to pedal but she wasn’t interested.

The teacher set up an activity with shaving creme and paint brushes, she played at that for a short time with some other kids from the general ed preschool class.

Then the teacher set up a water table.   I actually got R. to wear the smock with no effort at all on my part.  I just told her she had to wear it to play with the water and pulled it over her head.

It was a very hot day and the teacher handed out spray bottles of water and asked the kids to spray her.   R. had a good time spraying herself, and it was fun to watch her giggle about it.

After a little more tricycle riding and a couple of trips down the slide she went back to the dollhouse and played with a couple of dolls and some furniture.   Girls from the general ed preschool joined her and the teacher tried to engage them, but everyone was too into their own thing.   R. stayed and played next to them for a few minutes and then moved to the other side of the dollhouse.  It looked like she was kind of watching the other girls through the windows while she played on her own.  I never saw a doll house on a playground before, but it sure seems like a good idea.

When it was time to line up to go in for lunch R. grabbed my hand and wanted me to go with her.   She frowned, but did not cry when we left.  We waited until they were walking back inside rather than walking away from her while she was still on the playground.

We got to meet the new students and they all seem so young.  It feels like so long ago that R. was that little, but really it wasn’t.

Observing motor group and recess

We went to R.’s school today to observe motor group and recess.  She was excited that we drove her and went into her classroom.

The motor group happens once a week and it is run by an OT and a PT.  It is only half an hour but they do many things.  They started by sitting in a circle and passing a ball back and forth.  They did yoga poses, R. was mostly resistant.  Which did not surprise me, but I have seen her doing some of those poses at home.  Then the kids sat on scooter boards and had to cross the room and match a colored bean bag to a colored mat.  R. can actually do this now, she was aversive to the scooter board at the beginning of the school year.   Next was an obstacle course which included jumping on a trampoline, rolling down a wedge mat, climbing an A frame ladder (something else she would not do at the beginning of the year), walking a low balance beam and throwing bean bags into a hoop.

As if that wasn’t enough, they did fine motor tasks at a table.  Each of the kids seemed to be working on different things.  R. had to use tongs to pick up tiny discs that the OT was holding in different positions, and then she had to put the discs into a cup that the OT kept moving.   She did this really well.  I definitely got the impression R. likes the fine motor portion of motor group best.

Then we went with them to recess.  I watched her line up with her back against the wall with the other kids when instructed. She held on to the teacher’s rope thing with her classmates to walk to the school playground.   She was super excited to have us with her, she was jumping up and down and smiling, and she dragged me all over the playground, showing me around I guess.

There’s a typical preschool at the school, and a steady stream of classes came in and out.  All the teachers seemed to know each other and all the kids, which was nice.
She was a little overwhelmed when there were lots of rowdy kids running around her, but she was also really interested in them – running away and coming back for another look.  She wanted to join a group of typical kids and one of her classmates playing ball in a circle with their teacher.  So I sat with her and helped her play.  She stayed with it for almost ten minutes.   She really wanted to play at the water table, but the rule is that the kids have to wear a smock and she will not wear one.  She did not cry, it was obvious she is familiar with the rules.

The teacher said she is going to work on creating and teaching R. and other students specific play scripts to use with the typical kids.   I think that sounds like a good idea.  I hate to generalize like this, but it really seemed like most of the typical kids would do anything the teachers suggest if it is fun and gave them some attention.

A letter to NT Parents

I wrote this about a year ago.  I didn’t post it here before because I thought it sounded more crabby than I intended.   For autism awareness month I dusted it off, and posted it to the Mom list that inspired it.

Dear Parents

My four year old daughter has autism.  Maybe you know us.  Even if you never meet us, considering the number of people with autism is currently 1 in 110, you will meet people with autism in your lifetime.

A while ago someone on a Mom list was concerned their child had autism.   I was kind of shocked by some of the responses.  Autism is all the rage now. Really?  Do you think it is trendy and fun to have a child who does not speak?   Is it cool to know my child may never live independently?   Do you think all the children who are being diagnosed are undeserving of the services to help them?

Someone else said  Your child doesn’t have autism – he’s great! I get that you probably do think a child with autism is quite awful.   But I feel the need to tell you that I think my child is great.  Better than great actually, but I’ll spare you my gushing.

My daughter is a person, she has likes and dislikes and she also has real challenges with communication.   Sometimes she is overwhelmed by sounds and sights around her.  I do my best to keep her away from stressful situations, but I do feel like it is important for her to be able to go out into the community.   If she screams or has a meltdown I will leave with her.  But every once in a while I really need to buy milk or something that can’t wait .   Yes I know she is loud.  Please have a little patience.

You may tell me that only babies have tantrums like my daughter, and if I would just discipline her she would behave.   I don’t expect you to understand that she has had years of behavior therapy.   But I hope that you can understand that part of having autism is immature development.   In many ways, she is like a baby or a toddler in terms of her ability to communicate.

Please don’t get in my daughter’s face while she is in the stroller and tell her she is too big and too old to be in a stroller.   Not that it matters, but she’s not seven like you think.   I’m sorry your world-view is so narrow that the sight of a large child in a stroller offends you.  But it is not my problem, please deal with it on your own time.

I’m going to take my daughter to the playground, and she is not going to act like your children.   When my daughter sees your son playing with a bouncy ball, she wants to play with the ball and with him, but she doesn’t know how to ask.  She will take the ball from him as her way of asking.  I’ll be right there with her, and I’ll tell her the ball is not hers, and I’ll make her throw or roll the ball back to your son.   I’ll admit it must look strange to you, that my child can’t do something so simple as say play with me, and that I have to be so involved with her.  In my fantasies (which occasionally come true) your son would play with my daughter.  Just pass the ball back and forth a few times.  It is a public playground after all.  It is your son’s choice, and if he doesn’t want to play with my daughter, that is fine.     But please don’t give us dirty looks, drag him and your other children away, and tell them they have to stay on the opposite side of the playground from us.   You are teaching your child that it is okay to be rude to people who are different and also that they should be ignored.

My daughter enjoys watching your daughter and her friends climbing on the equipment and hanging upside down.  She also likes it when your son brings his remote control helicopter to the playground to fly.  I know she looks a little strange, her body quivers with excitement and sometimes she’ll jump up and down clapping and and saying yay.   The kids don’t mind the attention, and I keep her safely out of harms way.   Please just let her watch.

I’m not looking for pity or sympathy.  But I do hope for a little patience and understanding.   You will meet people with autism, they will be your child’s classmates and your neighbors.  Autism is not contagious, in fact studies are showing that typically developing children actually benefit from exposure to children with special needs.   I’ve seen this first hand.  It’s never to early to teach tolerance, and that is a gift that will continue to give through a person’s life.

Here comes spring break

Spring Break has an extra day tacked on as a furlough day, so it started on Friday  The school department is trying to save money.   School actually ends for the year before Memorial Day, so it seems like we are getting into the last stretch before the dreaded summer.

I’m still waiting to hear about ESY.   I’m fairly certain it will not be at R’s regular school.   Which worries me a bit, but if they can finally finish the construction over the summer it will be worth it.

R.has been saying more spontaneously.   When I would normally prompt her with a word, I can wait and give her an expectant look and she is saying a word more often.  The word I prompt the most is come.  I make her say it every time she hand leads me.  She is starting to say something as she pulls my hand some of the time.  But with E. she’s doing it almost all the time.  A couple weeks ago she was saying what sounded like Da cuh then last week it sounded like Duddy come, and now it is really Daddy come.  She’s also saying Daddy no.

She is labeling things, which is new.  I mean just naming an object she sees, not saying the word because she wants it.  She has really only labeled numbers, labels and shapes before this.  Mostly she is labeling animals and food.

R. has also developed some separation anxiety or something like it.  She has to know where I am at all times.  I don’t think she cared too much before.  Especially when we go out, she is constantly looking for me.  E. will be pushing her in the shopping cart and she will be craning her neck trying to see where I am.   I remember during our assessment with the ABA provider for early intervention, the program director told me that R. should be referencing me (looking for me) constantly.    Of course she wasn’t.

Someone always leaves the gate open at the playground, and I usually spend most of my time trying to beat R. to the gate so I can close it.  A useful side effect of this constant looking for me, is that she is not running away at the playground.  She runs off and she comes back, especially if I don’t follow her.   She also used to run right for kids on the swings.  I think she really wants to know what it would feel like to be smacked by someone on swinging.   Lately she’s actually been just watching the kids on the swing, and I’ve seen her stop short so she doesn’t get run over by a kid on a scooter, or kids just running around.    It’s like I could actually sit down at the playground, if she would let me.

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.

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.