Things We Are Doing with Caroline

Early Intervention and Therapy

Caroline began her early intervention around 7 weeks of age.  At 6 months she began 30 minutes each of speech therapy, occupational therapy and physical therapy per week.  I remember thinking “what in the world does a 6 month old do in speech therapy and occupational therapy?”

In Caroline’s case she has issues with the muscles of her mouth and tongue.  This problem is very common with Down Syndrome.  Originally speech therapy centered around oral motor exercises that she did at therapy and that we then followed up on at home.  These days we work on facial exercises, sign language, speech and cognitive functions.

In the early days it was often hard for me to distinguish between her occupational therapies and the physical therapies.  To my untrained eye I would describe the early occupational therapies as fine motor skills and the physical as gross motor skills.  As she aged, the differences became more apparent.  The OT would work on things like feeding skills while the PT would work on crawling, then walking.

These days Caroline has 2 hours of each type of therapy.  They are broken down into one hour sessions of each type for three days of the week.  It may sound like a lot of effort, but it’s like any other routine, once you get in the habit of doing it, it doesn’t seem like that much.  We take her to therapy less often than my best friend takes her son to football practices and games. 

I can’t stress enough how important we think the early intervention and therapies have been for Caroline.  Most of the experts who see Caroline feel the same way too.

School

Caroline started special ed through our public school system shortly after her third birthday.  My initial fears about where she would attend school were so misplaced.  She has the best teachers and they foster such an incredible atmosphere.  She even rides the bus to school every day.

Special Clinics and Doctors

The Medical University of South Carolina in Charleston has established a special clinic for Down Syndrome that utilizes the expertise of a number of individuals.

Since individuals with Down Syndrome often have issues with hearing and sight, we also see several specialists in this area.  We see a pediatric ophthalmologist at the Storm Eye Institute at MUSC.  His name is Dr. Richard Saunders.  We love him.

Also high on our list is Dr. Ted Meyer and Kimberly Snyder both of MUSC.  Dr.  Meyer is an Ear, Nose and Throat specialist that focuses on ears.  Prior to Caroline, I had no idea that you could be more specialized than “ENT.”  Caroline, like many children with Down Syndrome, has very small ear canals.  This small size affects her hearing.  That is where Kimberly Snyder comes in, she is an audiologist.  As Caroline has grown, so have her ear canals and her hearing has improved.

Knowing where your child stands for both eye sight and hearing is so important.  That information told us what we were up against with Caroline.  We were able to get remedies that allowed these two issues not to effect her development dramatically.

Hope Haven is a clinic in Jacksonville, FL that has been a God send.  While the clinic at MUSC is new, Hope Haven is not.  The director has a son with Down Syndrome.  All they do every day is work with individuals with Down Syndrome.  When Caroline was 16 months old she was still struggling to walk.  Five minutes into a session with one of their physical therapists, they had her taking her first independent steps while using “Hip Helpers.”  (see links page for more info.) 

We have been going to the clinic every 6 months.  They assess her on all therapy levels – OT, PT and ST.  We also meet with an educational consultant.  Several weeks after our visit we receive a detailed report which we share with our therapists and use as our personal marching orders.  The information has been invaluable.  

“Helmet Head”

Who knew this phrase would come to mean more to me than just a bad hair day?  Caroline, because of the muscle weakness associated with Down Syndrome, tended to sleep in one position every night.  As a result she developed a significant flattening of the skull on one side.  We met with a specialist and she was fitted for a helmet that reshaped her head.  It looked bulky, but it never really bothered her. 

If you suspect your infant has this problem, you might need to be a little pushy about it.  I had some people tell me to just position her head differently when I put her down and that would solve the problem.  When I finally pushed enough and was referred to an expert, he told me I was lucky I came in when I did as it was definitely a problem and we were just barely still within the growth window of time allowed to fix it.

“Small Stature”

Children with Down Syndrome are small.  Caroline is smaller than most children with Down Syndrome.  She is off the chart (even the one corrected for Down Syndrome) small.  We are seeing a pediatric endocrinologist (Dr. Bowlby) and a pediatric gastroenterologist (Dr. Pillai) at MUSC to determine if there might be a problem. 

“Hap Caps”

This entry will probably the most controversial for some people reading our web page.  Hap Caps are a supplement designed specifically for people with Down Syndrome.  I remember asking one of Caroline’s doctors early on what he thought of the idea.  He said that there are lots of non-traditional things in medicine that were currently being tried with some results.  I asked him if he thought they might harm her in any way.  He looked at the bottle and said “no.”

We feel that if it doesn’t hurt her, and there are those that claim that it has really helped someone they care about, why not try it?  Is Caroline’s success so far attributable solely to “Hap Caps?”  I doubt it.  Could it be a part of it, maybe.