Our daughter
does not seem to have any mental delays and
is quite advanced. This ability has been a blessing
since we require her to follow directions as much as is possible with her
high muscle tone.
The
first directions that she was required to follow
was being told firmly to hold her head up. In
the beginning it was just for about 15 seconds.
Now after a gazillion verbal requirements and
follow throughs, she has pretty good head control.
I also carried her on my hip as much as I could physically bear it (she
weighed 25 pounds at
8 months of age). This forced her to use her
trunk to support herself somewhat.
The movement that she felt as we walked
also helped her brain to
diffuse some of the high muscle tone and use
more normalized muscle tone. (This is called
vestibular stimulation).
We also did major (20,000
stretches in 3 months) oppositional stretching while
holding her on our porch swing. She has made
tremendous improvements and has just as far to
go.
My thoughts in the beginning was to facilitate head
control first, then trunk control, then work the
muscles proximal (closest to the trunk) to distal
(furtherest from the trunk), this being the order of
development.
It meant segregating her movements,
in the beginning, such as NOT asking her to hold
her head up and use her arms at the same time.
It meant only asking her to hold her up.
As she
became more able at this then we integrated some
head control and arm use.
By explaining all this,
I say it to illustrate, that improvements come, but
it is for most of the families, an involved and
slower than we would like process.
In most average healthy kids you see them
trying to walk at a year of age and actually doing it within a three month
period (without a lot of facilitation, I might add). It is exactly the
opposite for us. It takes much facilitation and many times longer. I say
this, not to be discouraging, but to engender the needed determination! Boy
does it take determination (as well as tears).
Hang on, keep up the good work, and keep that
youngun' (as we say in the South) working. You
will get more.
Another thought that helped me, was if "sitting" isn't coming at this minute
and you've begun to feel a
little hopeless, pick another area and work on that. You may be surprised at
something coming in, that you weren't expecting.
Our daughter READ and
understood verbally spelled words at 19 months of age. She has a large empty
hole where a speech motor should be, but she tells us when she is hungry (and
that is often!), she says "mo-ure" when she wants more drink. She says "off"
when the lights go off. She says "van" when she sees the van. She says
"pizza", "pepsi", "pretty" and lots, lots, more.
We just had a funny little
conversation this past week. I asked her if she was sleepy at 9 P.M. and she
said "naahhh" (which is the usual answer) and I then thought I would take it
a step further and as her if she was sure and she said "I'm sure". Those two
words were an occasion for lots of laughter for us. I now ask her often,
questions that end with "Are you sure?" and she answers "I'm sure".
She is
four years old and reads signs to us when we are out running errands. I
stopped at a local Salvation Army to dig around and as she emerged from the
van (on my hip), she looked up and said softly "thrift store". That is what
the sign said above the door to the Salvation Army. I cracked up! This is
just to illustrate, that you may be surprised at the things your child
"shouldn't" be able to do, but DOES.
Motivate, stimulate, facilitate, segregate, integrate.
That is pretty much the story of our life.
One item that I would recommend and implore
for children that are movement delayed, is a
gait-trainer. I prefer them to standers. They can be used as a stander but
gives the appropriate
support to facilitate a child being able to take
independent steps. Knowing how pleased we have been with ours, I would "run
to the therapist and ask for one to be prescribed". Evan has one and
walks with it about 50 to 70 feet in a paved parking lot.
There is not a way to know what the next few
years hold, but hopefully you will be looking back
and seeing where you have come from.
Keep up the good WORK and it is the hardest work you will ever do.
Sincerely,
Joan