She was adopted at 5 weeks of age and it was a peculiar thing that she did
hate
to be lying back. I usually fed her her bottle sitting fairly upright with
her head tilted
back. She just never wanted to be down on her back. If you rocked her to
sleep
and then put her down she could lie on her back and her arms would be over her
head in such a relaxed way. (Her tone goes away in her sleep).
As she was 4 to 5 months old and she began to experience more stress
(teething,
constipation, hunger) from being awake alot, she became very high tone. Evan
has VERY high anterior flexion when under stress. From her collar bone to her
pelvis, all those trunk muscles would flex VERY tight. Especially if she was
on her
back or stomach while awake. It would be much better if she were upright and
it
improved dramatically when she was moving.
I later found out that the
improvement
she experienced while moving is called vestibular stimulation. I decided to
use that
movement to help me to stretch out and break up that abnnormal anterior
flexion
pattern in her trunk.
If I tried to lift her arms and stretch her out then
it looked as if
her chest would literally rip out of her body because it was so tight. It
became necessary
to have her moving WHILE I stretched her in order that she could relax some
and
tolerate the stretching.
I would sit on our porch swing, push with my feet,
swing
high, hold her with one hand and stretch her with the other. I did a
specific number
of arm stretches and trunk rotations each day and kept count with each swing
stroke.
We did about 20,000 stretches in 3 months time. (we wore the metal hooks that
hold the swing in place paper thin, Evan's dad saw the hooks about to break
one day and replaced them.)
The pattern began to break up and
let her go.
This same reflex pattern also caused her eyes to pull toward the
ground
in a similar manner. We would have her lie on her stomach facing us as we
were
reclined in a recliner.
We would say "I'm going to blink my eyes" and she
would fight
off the tightness long enough to look at my eyes for a few seconds, I might
change
and say "I'm going to pop my mouth" and she would lift her head and eyes for
a
few seconds to see me do that.
Another might be "I'm going to stick out my
tongue".
The more times that I could get her to lift her head and eyes to get
volitional control
over the obligatory reflex, the more she improved.
It has been a BIG job but
she
has made some major improvements from the severity that she experienced in
the
early days.
It becomes hard to spend as much time as is necessary with the
intensive intervention so we tried to think of things that would motivate
Evan and give
us a break too. We put a TV and VCR in the floor and made a video of us very
close
up to our face either singing or doing the "I'm going to....." therapy.
Then we would
have her lie on her stomach (even though she was so tight and even though she
hated
it)and watch us on the video tape (she was still trying to work but we were
able to have a little break).
What had to happen was; she was going to HAVE
to start tighting and contracting the muscles on her back and the ones at the
collar bone were going to HAVE to let go. By putting her in positions that
forced her to do it, she did get tighter back muscles and looser front
muscles. (That old abnormal reflex pattern still affects her 4 years later
but has improved by a good 80%).
A big key (and this takes lots of creativity) is to find the things that will
MOTIVATE him
to lift his head while lying prone (on his stomach).
When Evan HATED being
on
the ball at the PT's, I would use a bright black and red ladybug puppet and
hold it up
very high. I would say "He wants a kiss" and then I would make kissing
noises.
She would get her mind on the puppet for a few seconds and lift her head for
the kiss.
In times past we've used food (like licking something) to motivate her to get
her lifting
her head.
I always kept in mind that everytime I could motivate her (even for 15
seconds at
a time) to lift that head, then she had contracted her back muscles and the
front
ones had let go. We told her time and again "hold your head up".
Another
thing
she was told at least a million times was "look at my eyes" because hers were
pulling down to the ground. After hearing it that much, her first word was
"EYE"
when she was about eight months old.
After about a year of these high intensity interventions Evan started to make
some
very good improvements.
I remember that I could feel a fairly normal kid inside this little concrete
statue of a
body. It felt as if I were having to chisel her out of a block of stone in
order to get to
her.
During those early days when it was so hard to stretch her, her neurologist
gave her
valium to help her be more loose in order that I could begin to get that
anterior flexion
pattern to break up through stretching.
I did not want to use the Valium for a long period of time because I did not
want to
compromise her ability to think and learn and work with me. As we began to
feel her
chest muscles becoming a little less tight, we did stop using the Valium.
But we
kept stretching.
One other thing that I felt was very important for me to do for Evan when she
was
at a young enough age to be carried on my hip; was to carry her as much as my
body could manage to do it, because when she felt the movement (vestibular
stimulation) of my walking, her tightness would let her go and she would
actually
use her back with much more ease to balance.
It was my belief that the more
she
actually got to practice using her trunk in a normal fashion, the more it
would improve.
I emphatically believed that being positioned in a chair or kid kart would
not give her
that improvement. Carrying her on my hip was my version of Equestrian therapy
(horseback riding).
I hope that you can find a way to help him. It is a HARD job but I believe
it can be
done. There are several components to getting it done. Visualizing what
needs done,
then knowing why you are doing it that way, motivating the child to work with
you
and work til you drop.
An average healthy person has to practice a motor skill approximately 90
times to
commit it to automatic memory. An impaired person will have to practice it
2,000
times to learn that same skill.
Most of the time a motivated healthy person
will
facilitate themselves through the 90 practice opportunities. More often than
not
the impaired person is UNABLE to facilitate themselves even ONE time.
Then
the
caregiver becomes that person that facilitates those 2000 times for each
desired
skill to be attained.
I say this not to be a discouragement but so that you
may know
when you may have worked on a skill 1100 times and are seeing no progress,
you are only a little over halfway there. It is easy to think that it may
not happen
if we've worked this hard and still it looks this bad. But as I say it is a
BIG job.
Then if you've worked that hard and it doesn't happen, you will know that you
have
done all you could.
We have some amazing kids on this site that have proven many people wrong.
I often tell Dolly's story of being called "jello legs" as a little girl and
at age 6
she NOW walks. These kids have been a real
encouragement
for me. Hope we can be that for others someday.
Sincerely,
Joan