The Sensory Issue Update

Last week, Moonpie had a mystery "fever" virus, which led to sleepless nights trying to keep her core temperature down, thanks to the anhidrosis that goes along with lamellar ichthyosis.  Her pediatrician had me come in on Tuesday after her fourth consecutive day of fevers over 102 F, and gave me a stern lecture on using the cooling vest to reduce her fever (from 105 to -- gasp! 101).

Whatever.

Anyway, Moonpie is now flaking and peely and totally fine.  I, however, now have bronchitis, and am at least vertical today, a huge improvement over yesterday.  I talked my mom into driving up here to help out (I can't breathe, mom. I can't get off the couch.  She is sitting on my head, mom.  Help. Please....) so Moonpie is thrilled and at the park with her Nanny, and I can cough my spare organs out in peace.

I've been wanting to do a post about Moonpie's sensory issues for a while, and just haven't gotten the time.  It's been two and a half years since she left the orphanage, and I'm still surprised by its lingering effect on her.   When we got home, she had a severe oral aversion, the result of never being allowed to explore the world through her mouth like a normal infant.  She is just now going through an oral fixation stage, meaning that I have to watch my three-year-old like you would an eight month old.  She picks up and puts small objects in her mouth, running her tongue and slobbering over inedible objects of all shapes and size. 

Which means I can't take a shower any more, because I can't trust her not to choke while she's out of my sight.

I fixed her a basket of baby toys that she can put in her mouth, and placed it next to her pile of pillows on the floor by the T.V.  She has shown some interest in them, but they are not nearly as fun as the teeny tiny Barbie shoes or the, dear God, what is that? A ROCK?  Where did she get a rock from?  Spit that out right now, Moonpie!  Are you trying to die?

We still deal with an aversion to loud noises as well.  I stash a pair of earmuffs for Moonpie in my purse, and she uses them whenever a loud noise scares her.  She can now tolerate the vacuum, hair dryer, blender, and the innocuous background beeps and buzzes at the grocery store, but the LOUD POTTY at the book store is still too much for her.   D took her bowling a couple of weeks ago, and her picture was in the paper wearing her bright blue earmuffs, pushing a hot pink bowling ball down the lane. 

I think it's adorable.  She's so brave now! How far she's come!

Most people thought she was just three and dressed herself.

Her diet is still largely limited to things that are orange, red, or brown.  Carrots, which are orange, are acceptable only as a conduit for ranch dressing, which is white but tastes good so it gets a pass.  Socks are shunned, as are long sleeves, but that may have more to do with her being a three-year-old than being post-institutional.

She self-soothes by twirling knots in her hair, a problem that led to a huge tangle just before Christmas that I had to cut out of her hair.  She now has bangs, which not only look really cute on her but reduces the amount of hair she can tangle.  Win-win, don't you think?

Night terrors are still a fixture in our house, as are regular nightmares.   She talks in her sleep, so during her nightmares she calls for me and begs for help, which breaks my heart.  Her biggest fear is being alone, and no reassurances on my part will ever be enough to convince her we aren't going to suddenly go away.  The normal preschool talks about "stranger danger," fires, earthquakes, and the ilk have all triggered a deep, primal fear in her. 

International adoption is so easy.  You just go and get a baby!  You are saving an orphan! You are doing such a good thing!  Here, let me pat you on the back.... 

Comments

[Alli]

Greetings from your fellow Delphin baby home comrads. You might also add to your comment on IA "All the child needs is a love and a good home." If only it were that simple. I look at my sweet, sweet babies and ache knowing that someday the full impact of their beginning in life will hit them square in the face and no amount of love will change the facts. I don't think people really understand that. Our job will be to help them feel whole and good about themselves despite these circumstances and to know that they aren't defined by their adoption. It's just a part of their beautiful story.

[Spacemom]

May I make a potty suggestion? My kids were terrified of auto flush toilets because you know they are loud, but you don't know WHEN they will go. I kept a peice of duct tape in my wallet and placed it over the sensor on auto flush toilets. Once the kids were done, I had them leave the stall and THEN I moved the "magic tape" and then it flushed. Eventually, they got over the fear. (and I figure it will take Moonpie longer, but eventually)

And I hope you don't lose too much a of lung coughing today!

[Sheila]

You have my sympathy on the awful cold, and on Moonpie's challenges. Sounds like you are doing a great job helping her cope, in many areas.

It also sounds like some of this is not uncommon for 3 year olds, though perhaps Moonpie feels these things more intensely.
Our triplets were preemies, and one of them was very sensitive to loud noises and bright light. Another has a more highly strung and anxious personality. She mouthed a lot of toys and small objects til the age of 4, and still at age 8 can occasionally be found chewing a rubber band, or eating the Play-doh (yuck!) We've seen hair-pulling and other odd self-soothing habits come and go too. Happily, as the child grows up and learns more language and emotional skills, it becomes easier for them to cope, and to find more acceptable coping mechanisms. I expect Moonpie will continue to improve, with your patient support and love.

All three of my kids were afraid of loud public toilet flushes when toilet training at age 3, and that dislike continued until age 6 or so. Automatic toilets are always a hassle - excellent idea with the duct tape.

I am truly sorry about the night terrors and nightmares, which are so difficult to help with. Hang in there, and I pray that this too will be a phase that improves over time.

[Annika]

I have cousins who were adopted from the Philippines, and I often wonder what sort of emotional trauma my aunt shoved a rug over. One of the boys was five at the time of adoption. Five! And this aunt and uncle are not the type to acknowledge anything that isn't "nice."

[thalia]

Thank you for this, it's a real education in the lingering effects of institutional care. Sounds like she is doing really well overall, with lots of help.

Sorry about the horrible illnesses, I hope all of you are better soon.

[Jen]

All very familiar. Mimi at five still will not flush a toilet or let me blow dry her hair, and is only just able to deal with the vacuum cleaner and lawn mower. And yet she cannot bear to have anything covering her ears -- I wish we could do earmuffs, that's brilliant! Instead we find ourselves avoiding potentially noisy places, and it's kind of a drag. She screams when I comb her hair. She still sucks her thumb to the point of blisters. She cannot be alone in a room.

Yup, adoption is easy! Love is enough!

Also, we can't wash her pillowcase. Because it has to "smell right," or she can't sleep. Thank goodness she has started mostly sleeping in her own bed, because seriously, that thing reeks.

[Erin O']

Our guys were only in an institution for 5 months, but they still go back and forth with oral fixations. It's most noticeable to me when they're feeling especially vulnerable due to a change or challenge in their now pretty stable lives. Our almost 5 year old would devour his own fist if we let him. Our 3 year old would devour my finger given half a chance.