Slow and Steady Burn

Aside

Stu and I watched a documentary on Johnny Carson a few months ago where they called his long career an artful “slow and steady burn”. His timing was spot on. He was cool. And since everything I encounter now relates back to parenting it got me thinking, “how can I be cool like Johnny Carson?”. Hmmm, some of you may be questioning my relevance right now. The answer is, that ship has sailed, and I was not aboard. But maybe, if I concentrate, I can be a little coolER. Specifically I was reflecting on this in regards to raising a child with special needs and trying to balance therapy and play. I mean, how can I meld those two worlds together seemlessly and push Norah without overwhelming her? I think the answer is the slow and steady burn. But since I’m not cool by nature I’m going to have to concentrate to get us there. I have to remind myself that little moments are so important. That nothing benefits her more than loving her and spending time with her. That I can’t be stuck on one activity that I want her to do. Nor can I be stuck on a timeframe that she has no say in. Be cool, Jamie, be cool.

We got home last week from our trip to Louisville, KY to visit Dr. Mervis and her research team in the Neurodevelopmental Sciences Lab at the University of Louisville. They conduct research to further understanding of cognitive, language, and social development in the context of intellectual disability and in typical development. They focus their work particularly on children with Williams syndrome, 7q11.23 duplication syndrome, and Down syndrome.

Norah’s participation in the study included several play sessions in little rooms with two way mirrors and hidden cameras. She also had a session in the “Baby Thinker” which we didn’t get to watch but they explained that Norah sat on someone’s lap and they displayed various pictures in front of her, again, while videoing. Stu and I filled out questionaries and had an interview with Dr. Mervis about Norah’s communication and behavior. And I had a psychological interview as well.

But as philanthropic as we are ;0)  we didn’t travel 16 hours just to participate, we were there for feedback and advice on Norah’s language development. Dr. Mervis has been conducting research on Williams Syndrome for over 18 years. Williams Syndrome is rare, it makes sense that  it’s equally rare to find doctors and therapists who are experts on it. Even if it’s understandable, though, it’s immensely frustrating to parents of WS kids (and adults) who just want to give our children every opportunity to reach their full potential.

So, in our exit interview with Dr. Mervis we got some golden advice on ways to encourage Norah’s cognitive and language development. I’m going to share it here for our family and friends who all so generously want to have a hand in raising Norah and who always want to know how they can help her succeed. And I hope other WS families might be able to benefit from the advice as well.

Build Receptive Language

  • Label things in Norah’s environment. Repeat. Repeat. Repeat.

Be sure that she is looking at the object when you name it either by catching her looking at something, placing it in front of her or tapping it to draw her attention.

Did I mention, REPEAT?

  • Have Norah choose between two items.

The choice should be obvious (you know which one she wants).

Hold the items beside your face so that Norah is encouraged to see your mouth as you name the choices, “Would you like the BLOCK, or the BALL?”

Reiterate the name once she’s chosen, “You’d like the BALL.”

Pay attention that you alternate the hand you place the desired object in.

  • Wait for it…..

Norah processes slowly. If you wait for a response long enough it will probably come. It feels awkward at first but I think once we are more familiar with Norah’s pace it will feel much more natural.

  • Make a personal picture book.

Take pictures of favorite and familiar people, toys, pets, etc and place them in an album.

One picture on each page (actually each set of pages, when you open each page she should only see one item, not two)

“Read” this book with Norah naming each picture

  • Simplify stories when reading to Norah

Make up your own short, simple but consistent stories when reading a book.

  • Less More hands signing "more"

“More” is an abstract concept and not a good starter sign for Norah.

THANK YOU! Encouraging Norah to sign “more” has been a primary part of Norah’s speech therapy to date. And it has caused her so much frustration we had to eliminate it from meal time. Even so, it got to the point where Norah would turn her head away if she saw us making the sign. I cannot explain the relief Stu and I felt letting this go.  And it’s apparent after just a few days that Norah is also relieved we put the kibosh on this aspect of her therapy; she’s already more communicative. Hey, what’s the sign for “kibosh”?

  • Fun, not frustrating

I know how important this is and yet I lose touch some days if I feel like we aren’t getting there fast enough. I needed a reminder. Play based learning! This one will keep us creative and in tune with Norah.

Encouraging Communication

  • Fun, not frustrating

REMINDER! This point applies everywhere!

  • Repeat her babbling EXACTLY

Until Norah is able to repeat sounds accurately back to us 90% of the time we should repeat her babbling sound for sound.

Once she can imitate more accurately we can switch it up by responding to her babble with different sounds. But the sounds should still be familiar and easy for her to imitate.

  • Have Norah choose between two items.

Details are above but this activity belongs in this category as well.

  • Sabatoge! (Got the awesome name from Norah’s Speech Therapist)

Set up situations where Norah will need your help. For example, place favorite treats in a clear plastic container with a screw cap (or other lid too difficult for her to remove). Turn off a favorite noise toy that she’ll need your help turning on.

Encourage Norah to “GIVE” you the container or toy so you can “HELP”

This doesn’t have to be sabatoge, if you catch her needing help in the right moment you can encourage her to communicate that to you by handing you the object or sliding it to you or just reaching for your hand.

Hand over hand, repetition and waiting may all be necessary in the beginning.

  • Build core strength

Norah’s weak core strength makes it difficult for her to make strong sounds or to gesture

Check with your child’s doctor and physical therapist for appropriate ways to do this.

For Norah we are placing her on an exercise ball, holding her hips securely with our hands and slowly rolling her forwards, backwards, side to side. I sometimes give her a little bounce too, because she loves to bounce. On a fun note, when I roll her forward she’ll give me a kiss. So sweet.

Also for Norah, riding on her push tricycle or sitting up in a grocery cart are good alternatives to riding in a stroller if she’s well rested. Her core has to be engaged and making small corrections.

Also for Norah, dancing with you. I’ve noticed when I hold her in front of me letting her sit on my crossed arms while I dance she has to correct with her core as well. Fun bonding time too that we both just love.

This program has been recommended to us by other WS parents before Dr. Mervis mentioned it. We’ve finally ordered our copy.

Cognitive Exercises

  • Matching. What’s different?

Start with identical objects. So, if you have two cars and a block be sure the cars are identical.

Once Norah does that well, the two “same” objects can be slightly different.

Once she can match those well we can have her match a picture of an object with the identical object.

  • Sorting

Once Norah has mastered the matching exercises above we can move on to sorting.

Behavior

Norah is a really good girl! We’ve seen a tantrum here and there but she listens well and generally complies. She is thrilled when you praise her. So my question to Dr. Mervis was basically how do we keep this up if Norah hits those terrible twos. How do you execute a reward system for a child before they can really understand stars and strikes?

  • Catch her when she’s good

Specifically this is working for us in regards to Norah being unwilling to play on her own while I make dinner in the evenings. She’d crawl to me in the kitchen fussing and I’d replace her in the living room, play with her for a minute to get her redirected and then try to return to dinner prep. But she’d be back at my pant leg within 5 minutes. Dr. Mervis suggested going to play with her for a few minutes when I notice her playing well on her own. It’s positive discipline/reward for babies! I can’t say we’re at the stage where my dinner prep is any less interrupted but timing those interruptions to be pleasant has us both less frustrated. In fact, the very first night I tried this, Norah only crawled to me fussing once.

  • Be consistent
  • Don’t hold grudges

Correct, redirect and move on.

Norah’s only just started speech therapy. So, while many (or perhaps all) of the points above are not news to families who have established therapy, the devil was in the detail for me. For example, we were already doing the choices activity but I was placing the items out of reach but in front of Norah instead of holding them beside my face. And I knew to repeat her babbling but would often switch it up or say an actual word back to her. Seeing the researchers interact intentionally yet naturally with Norah really helped me appreciate  her pace and the benefit of waiting for it. They were patient, moved slowly, and spoke softly using few words but lots of repetition. When doing the sabatoge activity they had her in a high chair which allowed them to repeat the activity several times without her losing focus and crawling away. I love how each area starts simply and then builds with her understanding.

And the “fun, not frustrating”? It really is a forehead slapper. That’s been our intention with Norah’s learning and development all along. It took us a few months but when Norah started physical therapy we figured out ways to work it into our every day lives that felt natural and that Norah enjoyed and she’s taken off with it. And yet, when we started “moring” and saw the frustration building, while we cut down, we didn’t stop to figure out a better way. But I have to stop. Think about what I really want for Norah to gain from speech therapy. Do I just want  her saying “mommy” as quickly as possible? I really, (I mean REALLY) want to hear her sweet voice calling me. But the real goal is that she’ll enjoy learning new things, understand them to the best of her ability and communicate with purpose.

Now, I have to take a minute to brag on Norah. She’s had a few new skills emerging that have taken off over the last week since we returned from Louisville. She is walking further distances with more confidence and no longer has to have a person in front of her to fall into. Norah is consistently placing things into containers. In fact, this morning she managed to put a piece of Kix cereal into a breast milk storage tube with a 1 inch opening. That’s right, EVERYTHING’S a toy in this house! She’s started “giving” a requested item more consistently. She even volunteered her paci to me this morning. She’s been cueing that she needs help by reaching her hand out to me. She’s saying “hi” a LOT and using it consistently to “call” me to reappear when I’m hiding from her. I’m actually a little worried I’ll get stuck playing this game all day. I’ve waited so long for her to vocalize in this intentional way that there’s no way I’m not going to answer. I’m at her mercy and she loves this game. Another emerging skill that seems to be “clicking” is her couch dismount. She’s had the concept for a while but execution has been spotty. I’ve seen her for three days in row lay down on her belly and push herself down with her hands until her toes touch the floor….without being reminded or taken through the steps.

Now, some of these advances might be lucky timing or a coincidence. But I don’t think they all are. We are all benefiting from our visit to Dr. Mervis. We’re reenergized, organized and educated. I feel less frantic about Norah’s language development, Dr. Mervis’ words replaying regularly in my head, “she will learn”. Norah IS learning! It’s such a joy to watch.