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.