This last month has been my
craziest month so far. I have so much to share with you all so I might jump
from thing to thing so bare with me. In my last post I was explaining to you
all that Brendan was getting ready to start his Hab M program 40 hours a week of
therapy. Well that has started and omg our lives have gotten so crazy. Brendan
also receives an additional 6 hours of aba, speech, feeding and occupational
therapy. So he is getting 46 hours of therapy Monday thru Saturday. It is all
in our house, which has been great, but I have to say it has just been such a
life changing experience. Brendan starts therapy everyday at 7am and some days
he doesn't end until 7pm. He obviously gets small breaks during the day to take
his normal short nap and then to eat. Brian and I are trying to get used to
someone in our house all day long. All his therapy right now is requiring 2 of
us at all times. So I am with the therapist doing therapy right next to
them all the time. Brendan has been really great with all the change. About 3 weeks ago the
state decided to change the team agency we were with that was providing the
speech therapy and occupational therapy. His original team won't admit it but I
am pretty sure they were begging to get rid of me. I was there worst nightmare
because I was constantly questioning everything they were doing. They really
disliked that, but its ok because Brendan didn't like them either. My new team
so far has been great. They are definitely way more qualified and much more on
the same page with me. But this has been yet again another adjustment for
Brendan and me. It is hard starting new with therapist because you have to go
back to the beginning and share everything we have been through already. That
actually is really mentally exhausting. They all have started with evaluating
Brendan first and getting to know him. His speech therapist and occupational therapist brought to my
attention a disorder called "apraxia." I had no idea what they were
talking about. So of course I ask them to explain it to me. (Apraxia is a poorly
understood neurological condition. People who have it find it difficult or
impossible to make certain motor movements, even though their muscles are
normal.) My first thought was no I can't handle any other diagnoses. I
started to read and do some research on it and wow it was explaining
Brendan exactly. The therapist did a mouth & tongue assessment and
discovered that Brendan doesn't have full range or movement of his tongue.
He can't move it front to back very well, or curl it or even move it
side to side. If he gets food on the top of his lips or the bottom of his lips
he won't use his tongue. The lack of movement with his tongue is keeping him
from developing words. The 4 words he can say he doesn't have to move
his tongue. This was all starting to make sense. This is called Oral Apraxia.
He now will do almost like a very intense physical therapy with his tongue. We
need to make him aware of his tongue placement and hopefully he will get more
range. But the thing that is hard is that he HATES when you touch his mouth. So
this has been a small set back because he fights you when its time to focus on
his mouth. I am just hoping he starts to get used to it because he needs
to be able to develop language. The second thing they brought up to
me was called "Limb Apraxia". Limb apraxia comprises a wide spectrum of higher-order motor
disorders that result from acquired brain disease affecting the performance of
skilled, learned movements. I will explain the definition so you can
understand it. We have been working on waving, pointing, touch your head with
Brendan for the last 6 months. He looks at us when we do any of these to him
but he just will not do it when we do it or when we ask him. However when he is
just playing by himself, I will see him point, wave to himself etc. So we
know he is capable of physically doing them however for some reason when
we ask him to do it with us his brain and motor muscles just can not connect. This is
what limb apraxia is. This is going to take a lot of intense hours working with
him. He can recover from this it just may take a while. Finding all of this out
is scary but at the same time it as helped me understand him better.
One of Brendan's developmental doctors Dr Gentry, he is the
one we get aba therapy through. He is the doctor that I can call and ask advise
or anything I need help on and he goes out of his way to talk to me like a real
person. He had asked his employee Katie who is Brendan' s aba therapist if he
could come to my house with her and work with him during one of her sessions.
When I heard this I couldn't even believe it. What doctor makes a house call willingly?
He came over to Brendan's session with Katie and first observed him and then
actually got involved with therapy. He was giving me so much information in the
1.5 hour he spent here. He said he was so glad he got to see and work with
Brendan because if he didn't he may of advised Katie
to continue certain things in therapy that would have not
been effective. Out of all his doctors and therapist the one thing they
all say is Brendan makes them think outside the box. He is the little boy that
you just need to spend time with to understand him. Explaining him to therapist
and doctors just doesn't give them the real perspective of his condition.
Dr Gentry has made the decision to start a program called PECS with
Brendan. Picture Exchange
Communication System (PECS) is a
form of augmentative and
alternative communication produced by Pyramid Educational
Consultants, Inc.[1] While
the system is commonly used as a communication aid for children with autism spectrum
disorder (ASD), it has been used with a wide variety of
learners, from preschoolers to adults, who have various communicative,
cognitive, and physical impairments. Now that we know he has
"apraxia" and it may take Brendan a while before he will start
talking this picture system will allow him to communicate. I have taken a picture
of almost everything and anything you can think of that he eats, plays with,
goes to etc. We have just started to train him on how to use it. For example if
he wants a drink a water he can pull the picture of his water cup picture off of the
velco that is attached on the paper and bring it to me and I will know that he wants his
water. It sounds simple right? Well for Brendan learning and understanding is a
challenge so we will be working really hard with him so he can use the
PECS system. I have been doing lots of reading on PECS and learning
each step we will be taking with Brendan.
Brendan had his 3 month follow appointment with his
developmental doctor Dr PeBenito at the Melmed Center on February 13th. She was
going over all the most recent data she has been sent from all his therapist
and then she asked me a lot of questions. She observed Brendan during the
entire appointment and she was extremely thrilled with how social he
was being. That is one thing I know Brendan has come a long way on. He actually
is starting to be aware of his surroundings a little bit more.
She then started to talk to me about the 2 different kinds of apraxia I
had explained early in this post. She started to tell me that she has
never had a child this young have apraxia. She discussed with me that Brendan's
case thus far has been so unique and difficult that she has decided that we
need to have Dr. Melmed himself be his doctor. Dr. Melmed just doesn't take new
kids anymore like he used to and he is also on a 8 month wait list for an
appointment. However they are getting us in next month because
its extremely important for Dr Melmed to take over his care. So for now we continue
doing what we are doing.
The iPad has been Brendans addiction. He has learned so
much from the iPad. His therapist want us to have him use it as often as
he wants. He loves puzzles on the iPad and regular puzzles. He is so good
at solving problems! The last month Brendan has mastered clapping! He actually will clap all the time. He thinks clapping will get him
anything he wants. He will bring me his snack for me to open and instead of
trying to talk he just starts clapping. It is the cutest thing. Then I know I
shared this already on Facebook but Brendan finally learned to give
kisses. I am asking him for kisses ALL DAY! I just can't get enough of
them.
Sorry
for the crazy long post, hopefully I won't take another month to write
another post! 
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