Harley - Deeply indebted and forever grateful.
Imagine everything that you know to be true in your life,
your job, your home, your location, and your priorities changing
in one moment. That’s what happened to my husband Jim
and I, when our daughter Harley was born
8 weeks prematurely with Down Syndrome. We left our home at
Larson Bay on Kodiak Island to give birth to a baby in a hospital
and we didn’t set foot in that home again for four years.
Harley spent five weeks in intensive care and through the
hospital, we were referred to Programs for Infants and Children,
an early intervention infant learning program.
We started services immediately. By services, I mean physical
therapy, occupational therapy and speech therapy. I cannot
stress enough the importance of early intervention - therapies
which teach the correct steps for developmental progress from
the beginning without having to retrain or break set habits.
For example, starting when Harley was 2 days old, an occupational
therapist worked with me on the correct way to nurse my daughter
in order to train her mouth to function normally. Kids with
Down Syndrome’s natural instinct to suck often never
kicks in. Early intervention directly contributed to her being
free of feeding problems and today her speech is off the charts
for a Down Syndrome child.
early intervention therapies teach the parents how to optimize
their time with their child. And boy did we need that! When
Harley was 6 months old, she developed a seizure disorder
called infantile spasms. These seizures will cause devastating
brain damage if not stopped almost immediately. Everything
we had been through up to this point was like a walk in the
park compared to what we were about to go through. The treatment
program we chose was very aggressive with lots of side effects,
but stops seizures in 7 out of 10 kids and thank God we were
one of the seven. Harley received a shot every day for 3 months
and, as a result, she had such tremendous swelling that she
had to tip her head back in order to breathe and lost all
muscle tone she had worked so hard to gain. She was in such
agony that she couldn’t bear to be touched and when
she lay down, she couldn’t breathe. PIC never missed
a beat. They changed her therapy and made her a neoprene body
wrap that enabled other people to hold her-- that was a gift
to her dad and I because we were living through a 24-hour
a day, 7 days a week ordeal.
Today Harley speaks in complete sentences, she can count
with help to 100, and she knows her alphabet, colors and shapes.
I have no doubt in my mind that this child is the way she
is today because of the services she received through early
intervention. Through early intervention, all of the “play”
that we learned to do (making a game out of exercising her
limbs or putting her on her feet) was really early intervention
to help her grow or help a muscle group get a memory. The
medical services and therapies that Harley needed are not
available in Larson Bay and if we had returned we would have
a completely different child. Deeply indebted and forever
- Mallory Hamilton