Author: Luisa Perkins
•6:14 PM
Tess-Tess, the Tester, our own Tesseract, my little Tesla Girl. Here she is in a photo I took last fall; it captured a rare moment of stillness for our sweet cyclone--raincoat, Tinkerbell tutu, and all.

Tess is as smart as a whip and has near-perfect musical pitch. She is incredibly kind, with a gift for empathy that belies her tender years. She is the happiest child I've ever seen, almost always with a 500-watt smile on her face. She will swing and jump and spin until the cows come home. I don't know whether 'whirling dervish' is a politically correct way to describe her, but it certainly seems accurate. Capricious? Volatile? Precious? Maddening? After almost six years, it seems like I am finally understanding Tess.

Tess is the fourth of our five children. When we found out I was pregnant with her, we realized we could no longer make life in Manhattan work. We lived in a 900-square-foot, two-bedroom apartment; the five of us did okay, but we knew another baby would bring us to critical mass. For one thing, we wouldn't all fit in a taxi anymore. We found our lovely house in the Hudson Highlands and began preparations to move.

During my pregnancy with Tess, I had amazing help in the form of several angelic humans, but there was still a lot of work to do. Was it the stress of moving? The packing, sorting, and lifting? Or just a timetable other than my own? Whatever the cause, and despite midwife-mandated bedrest (with three little kids? really?), I went into labor with Tess five weeks early.

We hoped that at 35 weeks, her lungs would be past the critical point. However, Tess ended up having to stay in the NICU at St. Luke's-Roosevelt for 10 long days. I couldn't hold her for the first week of her life; even my touch through the incubator gloves seemed to distress her. After what seemed like forever, she was disconnected from her breathing tube and all of her IVs, and she came home to a relieved and grateful family.

Tess was a great nurser, and I wore her in my sling almost constantly. She quickly gained weight and thrived, but she was much more difficult to soothe than our other three kids had been. Through trial and error, I discovered the best way to calm her: a) firmly wrap her up in a receiving blanket, burrito-style; b) hold her tightly and vertically against my chest, with one hand cradling her neck and head; and c) bounce hard, sitting on the corner of our bed, for as long as my thighs could stand it.

When she was about 18 months old, we realized she was having some vision problems, and Tess embarked on a long course of patch therapy and glasses. When she was 3 1/2, surgery on the muscles of her eyes was necessary; she came through it like a trouper.

It wasn't until last year that I finally admitted to myself that perhaps Tess's dramatic mood swings--from wild joy to prostrate frustration--were a little off the normal scale. I confided my fears to just the right person; my dear friend's son had just been diagnosed with Sensory Processing Disorder, and this friend suggested I look into it.

I bought and read a book called The Out-of-Sync Child, instantly recognizing Tess in its pages. There are several subcategories of SPD; Tess is hyposensitive. This subcategory is also called 'sensory-seeking.' She has three challenges: her vestibular and proprioceptive senses both need extra stimulation (thus the constant spinning, swinging, hugging, etc.), and she has a hard time self-regulating when it comes time to make a transition (going to school, leaving school; starting an activity, stopping an activity; any change is hard). Tess is on the mild end of the SPD spectrum (her OT diagnosis at school was at the low end of the normal range), but SPD can also occur concurrently with ADD/ADHD or autism.

What a relief it was for me to have a framework for our experience. And how great it is that Tess's condition is entirely treatable. We are very blessed to live a half-mile away from a skilled and intuitive dance therapist named Suzi Tortora. Suzi wrote a book outlining her highly successful method called Dancing Dialogue. Her work with Tess and the things she has taught us to do at home have helped us tremendously.

I'm not a big fan of bringing more 'stuff' into the house, but tools are an exception. We've found a few things that help Tess be more aware of her body in space: we already have a tire swing and are looking into getting a trampoline. Rocking horses are also a safe outlet for kids who crave motion. Chewy tubes and weighted vests like the ones at Pocket Full of Therapy help calm sensory seekers as well. (A chewy tube is worth its weight in gold; our pen and pencil supply is now safe from constant munching and mangling.) Suzi also recently recommended that we get Tess something called a Body Sock; it looks like so much fun that I'm sure the other kids will beg to borrow it.

Toys and tools aside, Tess is not too big for me to roll into a blanket and hold on my lap like a big, smiling burrito; this helps us both take a moment and calm down. Tess's future is bright; her fondest dream is to become a pediatric ophthalmologist, so that she can work next door to her beloved Dr. Steele. She certainly has both the brain and the energy to become anything she wants to be.

Which reminds me: we saw Dr. Steele last week and determined that Tess needs another round of surgery on her eyes; this will take place on April 19th, and your prayers on her behalf are very welcome.
This entry was posted on 6:14 PM and is filed under , . You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

8 comments:

On 10/4/07 , Amanda1 said...

My prayers and well wished to you, the family, and of course, Tess!

Wow, can I relate to your experiences with her. My son has never done well with transition, I still HAVE to rock him to sleep at 3 years old, and he is always in motion... he "flaps" his hands a lot. Thank you for giving me a path to look into... Its been maddening at times to not know how to sooth him.

 
On 10/4/07 , bubandpie said...

I've always insisted that Bub doesn't have any sensory issues - but he does have difficulty with transitions (always has), and he seems to have certain difficulties locating his body in space. I wonder if I need to look into this more.

 
On 11/4/07 , Radioactive Jam said...

"Sweet cyclone" - what a vivid description. Hope the upcoming surgery brings a speedy recovery and complete success.

Also - slightly offtopic - I like your judicious use of wordplay in post titles. So far I've only caught this one and the Pride-Shawl post, but I suspect there are others. Nice touches, those.
:-)

 
On 11/4/07 , Mommy-Like Days said...

I know the focus of this post is the diagnosis of Tess, but I am equally fascinated by the idea of living in a 900 sq ft apartment in Manhattan with 3 kids! I love it. You had to move b/c of the taxi issue!

 
On 13/4/07 , Shannon said...

Tess is usually the first smile I get every morning. I put Kenney on the bus and he forgets all about me as marches up those big steps, but Tess has a sunny smile and an enthusiastic wave for me- a great way to start every weekday morning!

 
On 14/4/07 , rjlight said...

This is so interesting--it is great that you can help others with the post. At first I thought you were describing my 5 yr old daughter--so many simularities. I think I will check into this more.
thanks!Quite impressive how you could live in your 900 sq. ft apart. in Manhatten. There were 4 of us in our apartment in Madrid -- a bit smaller but I went crazy!:)

 
On 16/4/07 , Christie said...

First of all, I love the Tinkerbell tutu! What a beautiful daughter...and it certainly sounds like she has a beautiful spirit, as well. I'll offer up my prayers for that surgery...for Tess, and for you. I know that watching your child go through something like is tough...my mom used to hide in the hallway the many times I needed stitches or the like. Now that I've got my boys, I can understand why my dad was the one on hand-holding duty. Anyway, I do hope that all goes well and those eyes get 100% better.

 
On 17/4/07 , Shannon said...

Prayers and happy thoughts to you and Tess for Thursday.

You mentioned your midife- were you with Midwifery Services in the city, by chance? Did you deliver in the birth center at St. Luke's Roosevelt?