Author Archives: mamafog

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.

Last day of school

Artwork from school

School ended on Friday. It seems like R. just started and was in a good groove with our schedule. There’s a week off and then she has four weeks of ESY. Her regular teacher is taking the summer off and so are most of the aids. I’m a bit worried about breaking in new staff, but at least the kids will be the same.

The teacher invited the parents to an end of the year circle time. I think our presence distracted the kids quite a bit. When we arrived R.’s back was to us, so she did not notice us for quite a while. It was so funny and sweet when she did notice us, she smiled broadly and had this look of wonder, like what are you doing here?

It was quite amazing to watch her sit still in her chair for the entire circle time. She jumped up a couple of times but was easily redirected to sit down again. Circle time usually lasts for twenty minutes, but things must have been slow because of the distraction of the visitors so it actually lasted for thirty minutes. Part of me feels like standing on the roof and yelling “My daughter sat independently for half an hour!” But I’ll settle for watching the video that my husband made.

She did participate a bit, filling in “go” for every ready, set. She sang along to one of her new favorite songs We all go traveling by. She also put the vehicle icon on the board as directed by the teacher. I learned the hand and feet motions that they do for the songs.

R. loves watching the video of circle time she sings along and is so focused. I think I’ll have to have “circle time” every day over vacation.

The evolution of fake snoring

Some relatives were visiting over Christmas last year and they have kids near R.’s age.  I can’t even remember the context, but the older boy pretended to sleep, complete with fake snoring a couple of times.   After they were gone R. started doing it!  She would lie down on the floor and snore and kind of grin.   She did it once in a while, but it wasn’t predictable and I couldn’t get her to do it by playing with her dolls or stuffed animals.

One day I told her I was very tired and faked a dramatic stretch and yawn, and abruptly “fell asleep”, snoring loudly with my head on her shoulder.  Of course she pushed me away and I sat up dramatically saying Ooooh you woke me up.  After just a couple of times she started pulling my head down to do it again.    This became a regular game to play.  Shortly after we started playing the game, we were shopping in Target.  R. is happily sitting in the cart and she starts making snoring sounds.  I’ll admit, I kind of ignored her, wanting to finish shopping.  She persisted in snoring and started pulling my head down.  So there I was taking a “nap” while walking through the store.

Lately I’ve been seeing her incorporating the snoring into different but similar games.  She acts out the game with her stuffed animals.  She puts her dolls to “sleep” on a blanket and invites me to come and sleep, really she wants me to snore.  But we can play the snoring game and then I can wake up each of the dolls and she’ll put them back to sleep.  She will snore when she lies down on the floor, and sometimes it means she is genuinely tired and other times she wants me to “wake her up” .

Hello Preschool

Just when I felt like I was finally used to the chaos of therapists in and out all day it was time for the transition to preschool.   I was determined to be more educated about the process and what our options were.    I attended a training workshop at a local organization for families of special needs children. It was very informative.   I also managed to meet some parents who had already gone through the process and being able to talk to them was invaluable.

R. only had one day without services, and that was because we had scheduled a doctor’s appointment.  She stopped ABA and ST on a Friday and started school on Tuesday.   We brought her to the classroom the afternoon before she started.  We went after class was finished and the teacher let her explore.  When I dropped her off the next morning she ran inside the classroom as happy as could be.   We’ve had no problems with drop off, it is amazing how happy she is to go to school.

She started taking the bus about three weeks after she started.   We got the letter with the bus information a couple of days after the bus started showing up.  So one morning as we are going out to the car there’s the bus.   R. had a huge fit, she couldn’t understand why she wasn’t getting in the car with Daddy.  I had to carry her screaming and kicking on to the bus.  I planned to ride with her the first day, so I did and she cried almost the entire way.   I talked to the teacher and she gave me a print out of a bus and a school.  I also found a Fisher Price toy bus.    The next morning we moved the car so it was out of sight.  I started talking about taking the bus to school as soon as she woke up, I showed her the bus PEC, acted out getting on the bus with her little people and played “The Wheels on the Bus.”    It worked.  She willingly went on the bus and we haven’t had a problem in the morning since.  Now all I have to say is “The bus is here.  Time for school” and she stops what ever she is doing and comes running to leave.  Once outside she runs for the bus with a grin.

I’m very pleased with how the teacher and aides work with R.  I told them that her normal mode of operation is to have a tantrum on the floor when you try to get her to do something that she doesn’t want to do.  After just a couple of days one of the aids told me that he had great success with saying R. up 1, 2, 3.

They also had trouble getting R. to transition to different activities. No surprise there.    The teacher discussed with me how R. likes to clutch items and suggested that she use an actual object for R. to hold onto to transition from activity to activity.    The teacher also plays the same song for the start of circle time and now R. will automatically go to the circle time area when she hears the song.

We do still have therapists coming into our home.  The school’s ABA program is at home for an hour and a half each day.  It took a few weeks to get into the new routine, but it is going well now.

Good-bye Early intervention

R. received ABA and speech therapy for nine months.  It seems strange to type that because it really feels like it has been much longer. She had therapy for 5-6 hours a day.  There were six people on her ABA team, four therapists, a program supervisor and a program director.  Plus she had a speech therapist.   I felt overwhelmed at first, it seemed like all of R’s waking hours were spent with therapists.   I certainly appreciate the services that we received and the energy and attention of the therapists.   I have to admit that emotionally, it often felt like the therapists were a constant reminder of all of my daughter’s deficits.   Here they were, demonstrating them in vivid detail, all day long.  That feeling never completely went away.  But as we saw progress it became easier.

In just a few weeks R’s eye contact improved, and she became more aware of people.  She would greet the therapists at the door and she had special little games she played with each one.    All the therapists were great.  They took the time to get to know R., they picked out toys they thought she would like and really seemed to enjoy being with her.  “We had fun”  they would tell me, and they seemed to really mean it.

When R. turned three in February all early intervention stopped.  It seemed like such a shame to have to stop working with the people who had helped her make such progress.

Here are some examples:

Then:  R. main method of communicating was crying.  She would occasionally say go appropriately, or make mmmm mmmm sounds when she wanted something. She would never ask for help, not with a toy or anything.

Now:  She can use PECS to communicate her wants, she hand leads, and she is really starting to talk!

Then:  R. would sit on my lap occasionally, and want to be held when she was scared or super tired, but there was no affection.  She had never kissed us or hugged us.  She tolerated her father,  but really only showed any interest in him if he sang to her.

Now:  She has developed real Daddy love.  She’s happy to see him, has little games she plays with him and she will hug and cuddle with him when she’s in the mood.  She will give kisses, but mostly to her father and stuffed animals.   I do get affection, hugs and lap time are more frequent.  She seems to actually enjoy my company, sitting with me, looking in my eyes and being happy.

Then:  The only ways to really play with R. were to play a game of chase and tickle, or to build towers and have her knock them down.  Even those games were hard to get her to be engaged.

Now: I could list quite a few “games” she’ll play with me. She will even initiate that she wants to play, by hand leading and sometimes bringing me the PECS icon or toy.

Where we started

My pregnancy was normal and uneventful. R was born full term at 38 weeks. She was healthy and developed normally until about 13 months. At that time she became quiet, losing the couple of words she spoke and she stopped babbling. She started to walk at 17 months and then started babbling again.

As her second birthday approached it became obvious to me that she was not developing at the same rate as her peers. She had virtually no useful language, she did not point or hand lead. It seemed like she was in her own world. She spent a lot of time running loops, jumping, crashing and rolling on the floor.

She had evaluations with a psychologist and a pediatrician from the regional center and also from a private pediatrician. She was diagnosed with autism shortly after her second birthday. It took several months but she eventually received 25 hours of ABA and 2 of speech therapy per week in home.

It seemed like there were an endless series of assessments leading up to the start of therapy. R always seemed to be at her worst during these evaluations. It felt like each professional showed her an assortment of incredibly boring toys. She did not have the appropriate responses, so the professional would then present us a laundry list of deficits. I would ask if their therapy would fix this, and they would tell me that there were no guarantees.

It took a couple of months before she really started to respond. We saw improvement in eye contact and engagement within a couple of weeks and it keeps getting better.