Sept 19, 2003
Hi Friends and Family,
We just wanted to update everyone on our family. We have all had a great
summer, especially Morgan who could have a good time at a funeral. Caren spent
most of her summer working in Ethan's therapies or and driving to and from. Rob
did a few hikes and has been mountain biking. Ethan worked hard in therapies.
He is progressing but he has a long way to go.
Almost every day Morgan got picked up by Gigi, Larry or Lisa for "dates" or
better called "lavish spoiling." We have been so blessed to have family nearby
to help with her so that Ethan can continue therapy. She and Rob recently went
on a campout with Papa Bob, Nana and Paige. They got to ride on a boat and even
caught a fish, which Caren reminds Rob is his first catch in nine years! Morgan
started pre-kindergarten this month and is doing well. We were a little
concerned when we heard that a fellow classmate had proposed to her after only
three days of school. But Morgan assured the boy she was to young to marry.
Later that week she confessed that he had kissed her in class but she told him
it was against class rules. She also helps in Ethan's therapy sessions and is a
great asset to him. She is patient and kind to Ethan, we call her a "walking
therapy." Recently, she told Caren that Ethan's tutors had taught her what to
do and that she could take over his sessions and the tutors were no longer
needed! Needless to say she is a bright light to our family and always keeps us
entertained!
Caren stays incredibly busy taking Ethan around to his various therapies,
helping with the sessions and all the other typical wife chores. She got a
chance to get away for a few days on her birthday weekend with Lisa and Joanie.
They spent a few days in Napa at a spa and visited the nearby shopping outlets.
Rob lays around and watches tv. :) He got a chance to backpack up Mt. Whitney
in July and has done a few small hikes around Tahoe. He also typically rides
mountain bikes on Wednesday evenings with a group of guys from work. We've
worked out a system of free nights where we both take a free night per week.
Caren usually shops at thrift stores and hits a movie with Lisa. Rob spends his
night mountain biking and at REI. We also occasionally take a Saturday night
off together for a date which usually ends up at Wal-Mart. Yea, Caren says Rob
is a cheap date too. :)
Ethan had a good summer swimming in the small pool in the back yard, taking long
walks around the neighborhood and in therapy. He is progressing well and we see
improvements all the time; however, his progress seems slower than it should
be. We set a goal at the beginning of summer for him to say a few words and he
didn't meet that goal which was disappointing. In fact his speech has barely
improved and he still can not say a word. His vocalizations have improved a
little in that he can make some sounds he wasn't able to prior to treatment. He
has a couple of word-like sounds and makes a great deal of effort to watch our
mouths and imitate what we are doing. For instance we will make an "O" sound and
shape our mouths into an "O," he also shapes his mouth into an "O" but is not
able to vocalize any sound. The speech therapists think he may have Apraxia
which is a condition where the brain and mouth are not properly communicating.
The brain sends a signal to the mouth, but the mouth is unable to respond with
a vocalization.
Currently he is in about 25 hours a week of ABA therapy, 2 hours of speech
therapy, 1 hour of prompt study at the M.I.N.D. Institute, and one hour of
neurological music therapy. Music therapy is showing a lot of potential for
benefiting him, it teaches how to create language through an alternate cognitive
pathway. Because there are still so few known programs or treatments that
definatly give results a lot of parents are trying many "alternative" and
biomedical approaches. We are seriously considering a couple of programs that
seem to be getting results though no formal studies prove it yet. One of the
options we are considering is brain map which looks at where brain activity is
occurring. The doctor looks for abnormal activity such as seizures and lack of
activity or no activity in certain sectors of the brain such as the speech
center. He then uses animal stem cells and Human Growth Hormone to prompt
re-growth and activity in those areas. This program is not certified in the US
so it's offered in Mexico or Japan. Uh oh! Believe us, you look at things
differently when your child has a disability and there is only a small window of
opportunity in which to help him. The second consideration is chelating (key-lating)
Ethan's blood. This is where Ethan's blood is filtered to take out any heavy
metals such as Mercury. We've had a preliminary test and he does have too much
Mercury in his body. This is based on the theory that mercury poisoning can
mimic many autistic like symptoms. Caren can explain it better because of all
her reading, but she is also just smarter. But remember, I are a callege
graduate too! hehe.... The theory on this is that Autistic people have too
much of some metals and chemicals like mercury.
Our current prayer requests are:
1) Pray for speech and that God will repair the communication between the brain
and the mouth.
2) Pray that God will give the doctors wisdom in what is best for our son.
3) Please also pray that God will help us in our fight to gain appropriate
services for Ethan from the Rocklin school district. Currently they are denying
all our requests and want to put him in an autistic preschool that is pretty
much just babysitting. Most likely we will have to involve an attorney.
Anyway, I know you like updates on how our little man is doing. We call him
"Biggie" or "Big E." Morgan likes to call him "Diapie Boy" now that she is past
that stage. Thank you to all of you who are praying for our family, your
prayers are more valuable to us than you can know.
With Love,
Rob and Caren