Over the past few weeks you have seen me post about
Run For Sophia, a fundraiser that my mom and I are doing to help raise money for the therapy costs of Sophia, my niece. Since today is
World Autism Awareness Day, I just wanted to share this piece with you from Sophia's mom (my wonderful sister Katy who works so hard to help her little girl each day). So here is a post from Katy, who blogs over at
living on phosphenes in case you want to read more about life at their house!
I’ve been meaning to write something about autism for a while now and what better
day to get to it than World Autism Awareness Day (April 2). My daughter, Sophia,
was diagnosed with autism right after her second birthday (which also happened
to be two months after my son was born). She didn’t babble, cried A LOT, stopped
making eye contact, had numerous sensory issues (a term we only later came to
know), intensely disliked changes and transitioning from activities, was awake for
hours every single night, was beginning to get frustrated/mad very easily, and a
number of other “tell tale” signs. (Newsweek has a great Autism Spectrum Quotient
survey to check out. Highly recommend:
http://aq.server8.org) We had known
something was different about Soph, but I had never considered autism. Thinking
back, I don’t know that I had ever met anyone with autism before my own daughter!
Even if I had, autism manifests itself in many different ways I’m not sure I would
have seen it even then.
At 22 months we began Early Intervention with her and after her diagnosis I found a
few more therapies I requested she have added. Speech (2x), Occupational Therapy,
Music Therapy, and Developmental Therapy every week helped develop her play
skills, cut down on her repetitive behaviors (hand flapping, lining up objects,
spinning) but did little to help with her speech. I was disappointed and looking for
help and answers. We began a predominantly gluten and dairy free diet (as well
as no artificial ingredients, weird preservatives, random food coloring, and so on).
I was flabbergasted (and still am) that this immediately cleared up her eczema
and gastric issues we had been battling since she was born. With these cleared up,
her sensory issues greatly decreased and she was able to focus more. After these
successes I felt a renewed sense of hope that not everything was set in stone. Upon
adding additional supplements through Kirkman Labs we saw even more progress
with sensory, attention, and for the first time ever (except for one three month
period when she was a baby) she began sleeping through the night! Then her third
birthday arrived.
Early Intervention ends at age three. At that point they encourage you to enroll your
child in preschool so we did. We had grand hopes of socialization and acquisition of
speech, etc. but upon her being placed in a self-contained class with other students
who had little to no speech and were equally as delayed socially, this dream was
soon dashed. Just at this low point I happened to be introduced to my pastor’s wife
who also has a child with autism. She recommended we start Applied Behavior
Analysis (ABA) with Soph. I had looked into this before but every place said I had to
find therapists and then pay for them to be trained and my insurance only covered
people with certain degrees and I was so confused I had put it on the back burner.
After she suggested I check out CARD (Center for Autism Related Disorders:
http://www.centerforautism.com) I did and was amazed. The people I spoke to were kind,
helpful, informed, and caring. Soph went in for a testing/observation and we filled
out an incredibly comprehensive survey and within a week they had assembled
a team of three highly qualified therapists and a leader to oversee it (which our
insurance was willing to cover some of) and Soph’s ABA commenced. After four
months (we just celebrated this anniversary March 19th) Soph has acquired some
words, has begun to use words to spontaneously request, waves hello and goodbye,
can take her coat on and off, listens and follows simple directions, has increased
eye contact, and many more skills. When we saw this dramatic result we requested
an aide from her team be allowed to assist her in school so she would see greater
gains here (something MANY MANY school districts allow and our insurance was
even willing to cover is as they saw it as something she needed) but our request was
denied. After a lot of thought and research (a great article in the New York Times
about how helpful ABA can be
http://www.nytimes.com/2013/01/17/health/some-with-autism-diagnosis-can-recover-study-finds.html)
we decided to withdraw her from preschool and concentrate on where we were
seeing huge strides being made…ABA. Soph’s hours have been upped from 27 to 40
(the recommended amount) and an additional therapist (who we just met yesterday
and already love) has been added to our amazing team. While this is a lot of work for
her, it’s also a lot of fun and the look of pride Soph gets on her face when she says a
new word or learns a new skill is priceless. Well…almost.
Insurance thankfully covers a large chunk of ABA (thank God laws have been passed
to make them cover more for children with autism) but we are still left with an
additional couple of hundred dollars we have to pay every month. On a fixed income
this isn’t the easiest thing to manage and why I’m SO thankful my mom and sister
have decided to do a race that benefits Autism Speaks as well as started a fund to
help cover Sophia’s rising therapy costs.
In three months Sophia will be four and two years will have passed since autism
first officially made its presence in our house. For the first time I can honestly say
I’m so happy and confident that we’re on the right track.
