Month: November 2020

Conversations with Tessa-building conversation skills despite apraxia

Tessa mentioned me in one of her social media posts, referring to the strategies I used for building conversation skills when she couldn’t talk.  I was in luck in that I had a ton of experience in child development to get me started, but there was a lot of brainstorming to build conversation skills in a child who could not actually speak.

So, the apraxia was bad. Tessa could not say a word until she was almost 4 (and it was slow going to get intelligible speech for years after that).  If you have experience with kids, you know that little conversations start way before four.  Convo’s with a two-year-old are classic, but I did not get that.  Neither did I get convo’s at three.  I missed all those conversations that could have been, but there was nothing else to be done except work with what we had.

Tessa understood what was said to her very well. Tessa had some sign language and good use of gestures.  Tessa had a great curiosity about the world.  Tessa was creative and focused beyond her years even as a preschooler.  And she had a sense of humor.  But what would be the impact of missing five years of conversation practice while waiting for speech to get better?  I had to work with what we had to try to provide some practice and experience.  And since I knew her best, I was the best person to do it.

Tessa understood language well, so I did not limit what I said to her.  I always pressed the limits of her vocabulary even when she could not say it back. As a toddler, she easily learned her colors.   I named the types of bugs during her “bug phase,” identifying them instead of just referring to “bug” and “insect.”  I used the vocabulary even though I was often unsure of how much she was digesting, but it paid off when she could talk more.   When she was eight years old,  I asked her what she wanted to be for Halloween.  She replied, “I am not sure yet, but it is going to be subtle.”  I asked what she meant by that and she described having fairly ordinary costume, but when she smiled, she would have bloody fangs (good enough for “subtle”).  I am glad I pressed the limits on her vocabulary.  I gave her directions, used examples, and repeatedly used larger words.  I would not know how much she was digesting all the time, but I felt I could not hold back because every other adult followed my lead and treated her as someone intelligent.

I did not think to start Tessa with sign language.  Her daycare teacher did that when she was about 14 months old.  I was still hoping her speech would kick in, but her teacher taught her the sign for “more” and Tess learned to use it quickly.  So, we added more signs.  Signs for ‘mom,’ ‘Grammy,’ ‘eat,’ ‘water’, ‘drink,’ ‘park,’ and eventually the “potty” signs.   It was slow going at first.  Tessa’s fine motor control in her hands was not much better than her mouth.  Many signs had to be changed or altered to something she could do.  Finally, at three years and three months, the fine motor control in her hands got better.  Even Tessa noticed.  She jumped from about 20 signs to 200 and I was hard pressed to

I see a bug in the rug

keep up.  She hauled the sign language book around, so we could look up signs for things we did not know.  I had to make a list for me and a cheat sheet for other adults in her life (basically, noting if the sign was at the forehead, the chin, the mouth, the nose, the head, the chest and what it might mean).

Tessa was soon signing in sentences.  My favorite was when she got into the car, took offense at the radio station, and signed imperiously, “Different music now!”  The most useful sentence was when she signed a full sentence in an IEP meeting when the team was trying to argue that a signing classroom was not appropriate for her.  She got my attention and signed, “I see a bug in the rug.”  We had a short conversation about this.  Her with sign, me with words.  The team caved and she got it in the class.

Tessa loved adventure eating
Tessa with her first mussels

Tessa had a great curiosity about the world.  She loved fish, the ocean, human anatomy, bugs, and art and was simply interested in many more things.  There was a lot to “talk” about.  Books gave us images for her to point at and ask whatever questions she could.  A book about tide pools led us to a French restaurant because she wanted to eat mussels (even though the book did not mention actually EATING the mussels). Tessa’s mind took leaps like that and I went with all of them.   I held lots of one-sided conversations, guessing what she might want to know about, and trying to make sure she had some signs to participate as much as she could.

And that sense of humor.  Being silly or turning an idea on its side always intrigued Tessa.  It kept her responding or at least laughing.  It kept her asking for more, with signs, with sounds, or with gestures.

I can’t say these were “real” conversations.  It was hard to sustain a full conversation when one partner only had 400 signs, some gestures, and good will (it was much harder when she only had 20 signs).  But I tried to keep things going by carrying the heavier load.  I put a lot of thought into asking questions or making comments that Tessa could respond to with a sign or sentence of signs.

When she was a toddler, I sang nursery songs that should could fill in words.  At dinner, I would sing “And the dish ran away with the   . . . . (dramatic pause)” and Tessa would excitedly hold up her spoon.  She might sign “more” for more of that or hold up something else we had a song for.  She could do the back and forth with a lot of songs and bedtime stories.

We used books to support communication.  Books with lots of visual detail appealed to Tessa.  Where’s Waldo and similar “find it” books kept us both busy.  There were lots of funny things she could point out and I could comment on.  She had signs for “why,” and “where” to also kept things going.  We made up “name signs” for Waldo and other favorite characters in books.  For example, Waldo would be represented by the “W” sign tapping the top of her head (for Waldo’s hat).  Buzz Lightyear was the “B” sign flying upward out of her other hand.

Tessa’s signing sentences weren’t long.  “Where’s my big Buzz Lightyear action figure?” was only three signs – “where” “big “Buzz Lightyear.”  “I see a bug in the rug” was simple “see” “bug” and a point to the rug.  These communications were more about ideas than number of words.  Given that, descriptive words for all the colors and the emotions were important.  Plus places (playground, school, home), stuff to do (music, books, play) and all sorts of food.  “I want” and “I need” were in frequent use, but so were “please” and “thank you.” We modified signs that were hard for her hands to make.  We made up signs for people.  Her daycare provider, Ms. Karen, was referred to with the sign for K at the lips.  It looked like Tess was signing for a cigarette, so it confused a lot of people at first.  There was also a shock with the sign for “going pee pee” (Tess tells the story here).

Apraxia Story
Well, I tried.

But we muddled through with sign language.  We tried PECS (a picture system) and an augmentative communication device, but Tess preferred the immediacy of sign.  She and I could get some back and forth going pretty easily and naturally without having to stop and create a communication with pictures or technology.  (It might be different for different kids, so keep an open mind.)  The exchange of ideas was important.  These were little conversations that did lay the groundwork for bigger ones once speech started to kick in.

And finally, a shout-out to Grammy and Uncle Paul.  Tessa was a conundrum to most of my extended family (and there were a lot of them).  She was the youngest of 12 cousins (which could be overwhelming for Tessa).  There were four aunts and uncles with respective spouses, along with grandparents. And we are a verbal bunch.  Words were the main means of communication.  If you were not adept at words, no one really knew what to do with you.  So often no one knew what to do with Tessa.  But Grammy and Uncle Paul just got her.  Grammy was laid back about the communication issues.  She spoke to Tessa as someone who had ideas and a means to bring them to creation. She was good at figuring out what Tess was communicating even if she did not know all the signs.  Uncle Paul simply had inside jokes with her.  He was not intimidated by her lack of words and could bring her to thrilled giggles by giving her the side eye and mentioning the tickle bug in his pocket.

We are always thankful for those who get our kids who are not standard issue.