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.

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.