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.

Does she protest too much?

When we started on this autism journey tantrums were R’s main method of communication. Our ABA therapists with EI used to track data on crying, they considered crying for ten seconds or less to be a protest and crying longer was a tantrum. It was painful to read actual data about my child crying, but it was extremely educational. Living day to day it felt like she was having tantrums all the time and I was alternating between tiptoeing and tap-dancing to head off the next meltdown. Looking at the data I learned that the majority of her behaviors were actually protests. It’s funny how just thinking about a behavior in a slightly different way really changed my attitude.

Thinking about short lived crying as a protest helped me to react in a different way. Instead of inwardly worrying about how far this would escalate, I could acknowledge the behavior for what it was, a complaint. I started saying things like, “oooh and arrggh” and supplying words to describe what I thought she was protesting about.

Another thing I learned from reading the data was that I was unknowingly reinforcing her crying particularly the protests. Maybe its Mom radar but most of the time I know what she wants and it is hard not to just give it to her. Now I know that we have to get her to offer some form of communication other than crying to get what she wants. It’s a work in progress because we have to keep challenging her to get to the next level. It seems like only intuition and luck tells you when to push.

We introduced PECS at that point and it was a valuable tool to show her that she could communicate in a better way than crying. We started literally hand over hand, prompting her to give the icon for what she wanted. Now she independently gets an icon for an item she wants and brings it to one of us. Sometimes she will cry in protest over something that we don’t have an icon for. Now I’m able to try to prompt her for verbal communication. I model a word that she can say and repeat it, getting down on her level and looking her in the eyes. I make sure to pause for a few seconds, leaning forwards slightly with my mouth open and an expectant look on my face. Sometimes I get something close to the word, and almost always I’ll at least get an okay.

Now sometimes she will babble with the intonation of someone complaining. It sounds so funny. We’re also hearing words mixed in with the crying. The other morning she threw her breakfast on the floor and started crying. Then she said “So hungry! Don’t want that.” Needless to say I gave her a different breakfast option.

Wonderful, wonderful trampoline

We were lucky that our former speech therapist found a trampoline on her street. None of her other families needed it so she gave it to us. It really helped during her long days of in home therapy. She had an outlet for her energy and the jumping helps to regulate her senses. I never thought about all the different ways that a trampoline could be used until one became part of our household.

Of course she can jump on a trampoline. She can jump barefoot, wearing shoes and socks, or just socks or even fuzzy socks. She can land on her feet, crash onto her knees or bottom. She’s not ready for hopping or fancy footwork, but sometimes I’ll catch her leaving toys on the trampoline and jumping around them. Sometimes she likes it if we hold her hands while she jumps -she gets even stronger stimulation. I will put a fuzzy body pillow on the trampoline and she will crash onto it. She came up with the idea of piling up all her stuffed animals on it and then crashing and rolling.

The therapists always called this game popcorn. We will place small toys on the trampoline and bounce them from underneath. She loves this, especially when the pieces go high and fly off onto the floor. She will collect them all and set them up in the middle of the trampoline, even standing them up if it is possible. We have used rubber ducks, small plastic animals, little people, letters, legos, pegs – almost anything will work. I always say ready set or one, two and she will fill in go or three. She’s starting to say all three words when she wants me to do it again.

When we were first teaching R. to use PECS, we would put the trampoline up against the wall and leave the trampoline icon where she could reach it. She really wanted to play on it so this worked really well.

We also use the trampoline as a table/platform. She will set up her dishes and cups on the trampoline although lately she prefers the dining room table. She will bring toys and sit on the trampoline on her own to play. It is also a great place to bounce balls and test the bounce-ability of objects. We also roll balls, spin tops and send cars racing across it.

No more naps

R. has almost always wanted to go down for her nap. Shortly before she started preschool it seemed like about half the time she would play in bed and I thought it was the end of naps. When she started preschool she was just exhausted when she came home and really needed a nap. She has ABA therapy in the afternoon, so with the nap the sessions have been from 4:30 – 6:00. After a couple of months of school, she started skipping a nap or two a week. I was also finding that on the weekends if I planned something fun during nap time she did not care if she missed it. When they were making the ABA schedule for the summer they asked me if I wanted to switch to an earlier time. They thought that R. would do even better with an earlier time slot. One of the therapists told me that in her opinion the kids with earlier time slots do better than the ones with the later times. I agreed. It will be easier to have therapy from 2 – 3:30, then R. can relax in the afternoon and we can even have time to go out and do things.

Last week was a week of summer vacation before ESY starts. I just stopped putting her down for her nap. I don’t think she noticed for a couple of days, it’s common to skip naps on the weekends. It seemed like when we were home during her usual nap time she would request music on her CD player (with PECS card). Then she would get all her favorite stuffed toys from her bed and relax with them in her bean bag chair.

I was actually most worried about R. wanting her nap when she comes home from school. She has a routine of coming home, diaper change, drink and to bed. Today was the first day of summer school, but we our summer ABA sessions don’t start until tomorrow. The bus ride home is longer than it was and when they arrived she was sound asleep. She woke up, but of course she wanted to go to bed once she was inside. She kept tossing her favorite toys into the crib and reaching up for me to put her in bed. I told her no nap today and she started to cry. Of course I felt terrible, what kind of mother refuses to let her kid go to sleep? I happened to explain to DH what was going on and she stopped crying like she understood. She retrieved her toys from the bed and went on to have a nice afternoon. I think it will take a couple of days to get the idea and she’ll be adjusted to the new routine.

I think I had a more difficult time adjusting to the lack of nap, especially last week when she was off from school. I was spoiled by being able to get things done while she was at school or napping. The nap also broke up the day and gave it a specific structure. Some days seemed really long. I found myself calculating things like six and a half hours until bedtime.