Forget Picasso! A Budding Michelangel-ina!

Lauren (our amazing DI) and Daddy had a surpisingly easy time with Josephine and finger painting today.

Because of her hypersensitivity issues, Josephine typically gags at the sight of anything she dislikes or doesn’t know.  It could be food, dolls, crayons or paint.

Taking a chance, Lauren broke out the finger paint and Josephine dove right in!  No hesitation at all.  But both Lauren and Daddy noticed Josephine drooling quite a bit and it seemed to get a bit worse as time went on.

Lauren found out from Kim (the OT goddess) that the drooling is a sensory defense and would soon be followed by gagging or vomiting.  Fortunately for Lauren and Daddy, the gag came soon after the drooling.

But what is so impressive is that Josephine not only dove right in; she tolerated the paint for more than a couple of minutes.

And made Mama the best rainbow ever!

The Gang’s All Here

Yummy red velvet cake with cream cheese icing, tea, chatting.  Just what you’d expect during a family training meeting with all our therapists, right?!

Seriously, we have the most phenomenal therapists EVER!

Each therapist discussed their strategy and goals for Josephine.  There was a lot of back and forth talk about incorporating all therapies during each session (i.e. mixing a bit of PT during speech and mixing a bit of DI with OT, etc..).

Everyone was on the same page and had one goal in mind:  giving Josephine the best opportunity to grow to her full potential!

When pressed for specifics, the therapists offered a range for Josephine’s developmental age.

PT:  5-6 months     OT: 7-13 months     DI:  8-13 months     ST:  8-12 months

Much clearer now, right?

The main point made extremely clear to Sheldon and I is “STOP WORRYING ABOUT DEVELOPMENTAL AGE”.  Focus on Josephine’s progress and celebrate those moments as they come.  Nothing more.

That I can do!

And Now For Something New…

We seem to have discovered another “possible” symptom or characteristic for Josephine and “her” disorder (I use quotes because each kid with Tet 8p is their own patient, until we can get a sense of what is what for all the kids).

The OT and PT are thinking Josephine has a sensory defensiveness issue (, as well as a hyposensitivity to movement.  These are both considered to be Sensory Processing Disorders.

Is this a result of Tetrasomy 8p?  Could be or it could be it’s just Josephine.  What we do know is while some typical kids have can have these issues, kids with special needs tend to have this more often.

Why is this presenting now?  My thought is Josephine is getting older and becoming more familiar with touch, sound, taste and smell.  She is “waking up” to the world a bit more.

Josephine has been having “gag reflex” moments in the past, but I always thought it was due to saliva or eating something that got caught in the throat.  Now I look back and realize she may have been having sensory issues for some time now.

How did we figure this out?

We were at Stepping Stones for group therapy and the OT, Alexis, suggested putting Josephine in a tub with uncooked pasta (penne, rotini, elbows…yum!).  I did so without any explanation to her and she freaked.  We took Josephine out and while the Alexis was holding her, Josephine started to gag.  Immediately, Alexis identified that the pasta was the reason for the gag reflex.  Not a clue until now!

So, to make sure I felt comfortable with this new information, I mentioned it to Kim, our Early Intervention OT.  Kim agreed.  In past therapy sessions, Josephine has been unhappy with messy play such as with pudding and finger paints.  She can’t stand holding a crayon and won’t touch a marker.

In fact, after discovering this potential issue, I observed more of the same reaction during lunch one day last week.  I gave Josephine pieces of mixed fruit, which is a little slimy from the juice.  She didn’t want it, so I added some Cheerios as an “incentive”.  Instead of eating both, Josephine looked at the tray and started to gag again.  Then she tried to separate the two foods and got very frustrated at the sight of the food.  I took the food away and she was fine.

I mentioned these occurrences to Lana, our Early Intervention PT, and she was surprised to hear this.  She wanted to test it herself.  So, she put some bath foam on a table and showed it to Josephine.  No reaction.  She put one finger in the foam.  Little reaction.  Two fingers.  More of a reaction.  The whole hand = GAG REFLEX.  Lana was convinced.

What happens now?  Will Josephine have this for the rest of her life?  Who knows.

Kim gave us a brush and explained that we now need to do a brushing protocol.  Brush Josephine’s hands, feet, legs, arms and back every 2 hours and follow it up with joint compressions.  This will help desensitize her body a bit.  Follow this link for more information on brushing:

Maybe she will always be sensitive to these things.  But we now know if there is a random meltdown, we can better understand the source and how to correct it to make Josephine more comfortable immediately and in the future.