Posts Tagged ‘play’

Treat the Child Not the Diagnosis

August 16, 2010

 

The first photos arrived. The baby didn’t look “quite right.”  But all newborns are “funny-looking,” I told myself.  Don’t be an alarmist.  Keep your mouth shut, Patty!

A long career diagnosing kids’ issues; this one was really hard.  I have known the parents and grandparents of this infant for many years.  Nope, just be quiet.

He’s now three months old; the family is coming for a visit.  Wow, I’ll have an opportunity to get a closer look. I take a deep breath and enter the house. He’s very cute in an unusual way.  A little agitated; maybe he just woke up.  His parents try to calm him; not an easy job.  Bouncing seems to help.  

Can I hold him?  Sure.  I look into his pale blue eyes.  They appear to be wiggling back and forth.  A nystagmus?  Maybe.  Not a good sign.  I try hard to get eye contact. I make goofy faces, crazy sounds, dangle my keys in front of his face.  No response.  I hand him back to his daddy. 

Back home, I wonder, “What’s going on here?”  Vision is something I know more than a little bit about.  Why are his eyes wiggling?  I should be able to engage a three-month- old easily.

Maybe Goggle can help.  I type in a few key words.  There it is, in a nano-second: a diagnosis of a rare congenital anomaly.  All the symptoms are present.

Do they know?  The father and both paternal grandparents are physicians.  Of course they must know suspect something.  Or do they?

Now I have an ethical dilemma. I recognize the need to move quickly, know the importance of early intervention. If therapies start NOW, this little guy has a chance to maximize his vision and other abilities. 

With whom do I share my concerns? Maybe a loving great aunt, who supports my work. Perfect! She relates my perhaps premature diagnosis to her brother, the other grandfather   Now the dilemma is his.  He calls the doctor grandfather. No, he has not heard of this particular pathology, but he will ask his friend the ophthalmologist.  

A call back.  No, the diagnosis is faulty, because the baby has no nystagmus. What was it I saw, then?  Maybe it was intermittent, occurring only when he was tired.

Sit tight.  Baby boy goes for his four-month check-up.  The pediatrician has some serious concerns. He sees a nystagmus, makes grave conjectures about its source: a brain tumor?

Off to a pediatric ophthalmologist.  In another nano-second, my Google diagnosis is confirmed.  Prognosis unknown.  What to do now?  Wait and see!  Return in three to six months.  WHAT?  Waste valuable time.  Not acceptable!

The calls and emails begin.  First the grandfathers. How many cases of this rare condition have I seen?  NONE!  How did I diagnose it then? 

Google!  Then the grandmothers.  How did I know? I saw a baby with symptoms that I didn’t like. Are there any experts nearby who can help? Yes, I know two special people in the same town where they live!

Treat the child, not the diagnosis!  For over 40 years, that has been my mantra.

First stop, a developmental optometrist. Both eyesight and vision can be elicited with lights and other novel instruments.  Visual stimulation jump-starts some movements. She offers a positive prognosis, and a home program of visual, motor, and other sensory stimulation. Within a short time, he is responding with laughter and relatedness.  Great signs!

Next stop, a reflex expert.  Another home program. Keep stimulating his reflexes passively. Give him lots of “tummy time.” Within  a few days he can almost turn over. 

More calls.  The parents relate their gratitude and grief.  Instead of “wait and see” they now have hope and an action plan. They’re “on the case.” Not the scenario they planned, but one they can handle. In addition to the private experts, they have connected with a multi-disciplinary early intervention center and their local school system.  Perfect!  I encourage lots of “tummy time” and movement.

Still many questions. How well does he see?  Would some lenses, prisms or highly controversial surgery help him? What about further testing? A genetic work-up? Nutrition?  He is still on only breast milk. Should it be supplemented?  Will he be okay cognitively?  These are all unknowns for now.    

Bottom line. The baby’s diagnosis is just a label. No matter what the name for his condition, I would have sent this young couple to the same two experts. No matter where they lived, I could refer them to top professionals.  All of us have the same goal:  treat possible causes, not symptoms.  Use a developmental, not pathological approach. Stay positive. Work with strengths to enhance weak areas. 

As they recover from the initial shock, they will most likely need some psychological support. They have a child with a diagnosis, a possibly devastating reality for high achievers. They don’t know as I do that this outcome is an opportunity for them and their family to learn and grow.  They are unaware of the miracles that can occur. I am grateful that they have the love, time, money and other resources to do everything possible. And to start at only four months.  What a luxury!

From Play to Work with Hattie Larlham

September 8, 2008

On a beautiful day last week I hopped into my car and drove to Mantua, Ohio, about two hours away, to visit Hattie Larlham, the new workplace of my friend, Ingrid Kanics, an occupational therapist.  I was not prepared for my emotional reaction to this astounding multi-dimensional operation serving more than 1000 children and adults with severe disabilities.

I had started my career in Boston at a facility very much like Hattie Larlham.  In fact, Kennedy Hospital was the first place I met an OT and learned about the power of movement.  Soon after I moved back to Pittsburgh, I was introduced to Ingrid, who was busy making play spaces accessible to all kinds of children.  Her two-story treehouse at Pittsburgh’s now defunct Center for Creative Play allowed kids in wheelchairs to get a birds-eye view.

Now she is in Ohio, honing her skills with the same population of medically fragile children I served in the early 1970’s  Just look at the picture of what she has designed! Ingrid’s skills have earned her several awards for incorporating sensory skills into children’s play areas in parks and museums. 

Hattie Larlham was a registered nurse who, in the sixties, became frustrated by the lack of programs for children with disabilities.  So she and her family started the Hattie Larlham Foundation and took children into their home and cared for them. Today, this amazing organization provides residential and community care through group homes, foster care, vocational training and other services.  Its 27 acre campus is growing and changing daily.  Ingrid showed me construction of new therapy rooms, a pool, multi-sensory room, apartments and eating areas that provide a home-like atmosphere of those with developmental disabilities.

Two of the most unusual programs are the sensory playground and the art room.  The programs are truly multi-sensory.  Even the most physically challenged residents can paint and draw by working with technology and a human partner.  The art that is produced is such high quality that it sells for respectable prices at local art and craft fairs.

After the campus tour, Ingrid drove me into Hudson, a charming historic town where Hattie’s Café  and Gift Shop occupy the town’s old pharmacy.  The Hudson location is one of three cafes run by Hattie Larlham.  Complete with old-fashioned soda fountain stools and lighting, it sells lunches, fair-traded items like coffee, and home-made products, both edible and artsy.

We ate a delicious salad prepared and served by a young adult with Down syndrome.  Other employees worked in the kitchen and were making gift baskets with a variety of themes, such as “Just Ducky Baby,”  “Best Teacher” and “Doggie Basket.” All purchases support education and training. Gift baskets are great ideas for holiday giving.  To view them and order, go to www.hattiescafe.org

Hattie Larlham was way ahead of her time.  Wouldn’t she be pleased at how her ideas have grown with the times and still maintain her homestyle feel? To learn more about Hattie Larlham, go to www.hattielarlham.org