Bethany's Story
We
were so excited to be starting a family. My husband and I had been
married for three years, just bought a house, and were financially
secure. This was the “perfect” time. Of course I knew it might take a
little longer because I had PCOS, but it took two years, two
miscarriages, and a ton of medications and doctor’s appointments before
we finally became pregnant with our children.
Our
first appointment was at 6 weeks and we were overjoyed when they found
two sacks! We went back the next week and heard two heartbeats but the
complications had already began. The second baby (baby B as they call
it with twins) seemed to be a few days behind baby A. As the pregnancy
progressed, the gap between the twins widened. Baby B was missing an
artery in her umbilical cord. While most infants have three, she only
had two but the doctors assured me that she would still obtain the
needed nutrients. In the end, our B baby (which we named Bethany) was
about 10 days behind her brother. The doctors were perplexed. At first
they thought there might be something wrong. We “passed” the initial
screenings for disorders, and we decided not to go further with any
genetic testing. It didn’t matter. We were happy to have our two
miracles no matter how it turned out. As you can imagine though, I was a
nervous wreck though most of the pregnancy! She was eventually
diagnosed with IUGR (Intrauterine Growth Restriction). The twins were
delivered via emergency C-section at 37 weeks when it was discovered
that she had not grown since my 35 week appointment.
While
the birth was not ideal, both children appeared healthy. They couldn’t
find anything “wrong” with either of them. Bethany weighed 4lbs 15oz.
She was a little peanut – the cutest little peanut I had ever seen.
The first few months were pure joy. Bethany was always at the 10th percentile
for weight, but was holding her own. She had reached her developmental
milestones at appropriate ages (holding her head up, rolling over, etc) until about 8 months when I really started to question if there
was something “off” about our little girl. She wasn’t able to sit up
without support yet. She had a hard time regulating herself. When she
got upset, she couldn’t calm down. I had to teach her how to
self-soothe. As she got older, we noticed she was sitting in a W
position.
 |
| W leg position |
Then as we saw other children her age begin to say words, we
noticed she wasn’t. A few months before her second birthday, we decided
to get her tested. The testing confirmed our suspicions – Bethany’s
language was significantly delayed, and so were some of her motor
skills. She began the Early Intervention services of speech, OT, and then
later, PT. The words came, very slowly. I waited and waited
for her to be able to tell me she loved me. It came just before her 3rd birthday.
I knew she was smart. It was in there, but it couldn’t come out! On
top of that she was clumsy. She looked like a wrecking ball at times.
Through the hard work of our therapists, and through our own diligence
we finally got a diagnosis… Dyspraxia.
Dyspraxia
is a developmental disorder that affects motor movements. The signals
going from the brain to the muscles don’t work quite right. They need
to be trained, with a lot of repetition, to learn the appropriate
patterns. In Bethany’s case, this accounted for her language delay,
poor articulation, and “clumsiness.”
At
three years old, Bethany attends a special education preschool where
she gets speech 4 times a week, OT twice a week, and PT once a week. She
STILL cannot sit up without sitting in a W (which is making her pelvis
tilt and could affect her posture/alignment), or sitting with something
behind her. She can’t cross her legs in front of her to sit like the
others can because of her low tone (lack of core muscles) and the
tightness in her inner thighs. She often cries through PT because the
stretches she needs to do hurt. Since she only gets it once a week, we
have to do exercises at home and constantly nag her about the way she is
sitting. I feel bad always having to be “on” her and focusing on what
she can’t do. She is such a sweet girl, but she’s also sensitive. We
want her to do well, but we don’t want her to realize her limitations or
to feel bad because she has to be directed so much.
Bethany
has always been such a caring and nurturing person. Early on, we
learned that she has a love for animals and we are blessed to live in an
area obsessed with horses. When I saw her on her first pony ride it
came to me - hippotherapy! My goal was to find something that Bethany
could excel in and feel good about and here was the perfect opportunity
to do just that. There is a local hippotherapy program for persons with
developmental disabilities. It’s run by a PT who knows how to get the
most out of each session. Some might ask why is riding a horse
considered therapy? Riding a horse will work all of Bethany’s areas of
weaknesses. Bethany will have to stretch before getting on the horse,
one of her least favorite things to do. Though this can be painful, the
motivation of what is to come will help her to do her best. Once on the
horse, she cannot W sit, her pelvis can not tilt and her feet and legs
must be in a forward position. Three things we constantly work on
with her. Horseback riding also requires a great deal of balance, which
is obtained through using the core muscles, her weakest area. That
will, in turn, help her progress in the other areas.
Hippotherapy
is still considered “experimental” by insurance companies and is not
covered. The therapy is expensive and we will have to pay for it out of
pocket. But, seeing Bethany improve in her fine and gross motor skills
and her self esteem is worth the cost. We plan to pay for it through
scholarship grants, if we are deemed eligible, volunteering at the
stable and financial support from our families. However, that will still
not be enough. Please browse my facebook page, Bethany's Hippotherapy, and consider
placing a bid on an item. We will be posting 1-2 items a week for the next few weeks. We will be auctioning off
necklaces, a bracelet, a plaque, and magnets. All are horse themed and hand
made by me (Bethany will help with the plaque) and would make great Christmas gifts! All proceeds will go
towards Bethany’s therapy. Thank you so much for reading Bethany’s story
and for your support in helping her reach her greatest potential!
