Therapy Thoughts

My child, Matthew, was four months old
when he was diagnosed with Agenesis of
the Corpus Callosum. He immediately began
both early intervention therapies in our
home and I also took him to private
therapy at a child development and rehab
clinic. We did this therapy routine for
several years.


I felt that Matthew received a very good
amount of therapy services but even so it
feels like you are not ever doing enough
therapy for your child when they are
developmentally delayed and struggling to
meet their milestones in so many areas.

When I took Matthew to physical therapy
once a week at the private clinic I did
something that I wasn't sure why I did
and I am still not sure why to this day.

Because we were not always in an isolated
room during therapy sessions we often saw the
other kids in the hallways working on walking
and other things and I would catch myself
watching those kids sometimes and find one
or two that were somewhere close to where
Matthew was (who were also working on learning
what Matthew was learning) at the time.



I got it in my head somehow that Matthew
would walk when those other kids who were
also in therapy learned to walk. That was
a huge mistake and a big disappointment not
to mention unfair to my own child. I
watched many kids learn things that Matthew
was working on and watched many kids pass
up Matthew and make progress while Matthew
was still working on learning to walk.

I am not sure why we do those things to
ourselves but I know I'm not the only one
who compares my child to another child...either
a child who is typically developing or a child
who has the same diagnosis of ACC as my own
child or even another child who is somewhere
around my child's age who is also delayed.

It is definitely not an easy task to help
your child learn and to allow them to learn
according to their very own timeline and then
to be patient and trust that it will happen
when it is meant to happen and to know that
you are doing everything possible to help your
child.



Another thing that can be difficult is to finally
have that peace and know that you ARE doing
everything possible to help your child through
various therapies and then you read something
that another parent wrote in a support group
or talk with another parent who tells you what
they did for their child and how they made
such great progress and 'caught up' to their
age level or close to their age level and are
developmentally very close to where they should
be. The parent goes on to say that they know
it was the therapy that made all the difference
and is the reason behind why their child was able
to catch up.

That can be hard to hear because, as parents,
we know that we are also doing all we can to
help our child through therapy services and
yet our child maybe isn't progressing as quickly
as some children do. It is easy to second-guess
yourself. It can cause you to feel like you're
failing to provide enough therapy or the right
therapies for your child if you allow it. But
it simply is not true.



I don't understand why one child who has ACC
makes leaps and bounds through all their therapies
and another child who has ACC goes months and
months with very little progress and struggles
to learn and accomplish one new skill.

Honestly, even to this day, when I read the
words of a parent who gives credit to the
therapies that their child participated in
as the reason behind why they were able to
overcome the huge developmental delays and
move forward towards hardly knowing today
that they were so behind at one time, I catch
myself feeling the sting of wondering if I
did enough to help Matthew through therapy
services when he was younger.



Each one of our kids who has Agenesis of the
Corpus Callosum or a corpus callosum disorder
will accomplish and do exactly what it is they
are meant to do in their life. Life is such
a precious gift. Take each day one step at a
time and celebrate what YOUR child can do and
each wonderful, new thing that they learn to do.

Reflections

Mirror Mirror on the Wall...
Who's the cutest of them all?

Babies love mirrors.



Mirrors allow babies the ability to see
their world in a whole new, unique way
from a different perspective.



Mirror play and exploration allows a baby
the ability to learn and make sense of their
world through the use of additional input.

Mirrors give a baby and child the ability
to take in information in a self-absorbing
way that is as mesmerizing as is educational.



My own child, Matthew, who has complete Agenesis
of the Corpus Callosum, loved mirrors and still
does. In fact, he was fascinated with mirrors.
He would spend a great deal of time in front of
a mirror watching himself open his mouth, and
move his mouth.

Many speech therapists use mirrors in speech
therapy sessions.



Mirrors were also used often by my child's Speech
and Physical Therapists during therapy sessions
when he was younger.



As Matthew got a little bigger I began to notice
how often his attention would be captured by
his own reflection in a mirror or in another
reflective surface such as the black panel on
the front of our dishwasher.

At first, I thought maybe it was a little too
much and I wondered why he would spend so much
time looking into mirrors.

Then I began to see and realize that, for Matthew,
a mirror and other reflective surfaces became his
window into making sense of his own self.

At that time (during this reflective exploration-
play) he used his upper body and his arms good
but he didn’t move his legs as much.

He would sit in front of the reflective diswasher
panel with his legs outstretched (while I was busy
in the kitchen) and he would move his legs in front
of that black reflective panel over and over while
watching himself. It was fascinating to me to
watch him exploring and learning. Matthew was
well past the typical baby/toddler time while this
exploration was going on.

I realized, and it made sense to me, that this
reflective surface and mirror exploration time
is the input that is helping him learn. It was
and still is an important way for Matthew to receive
much needed input in order to make a connection
and learn something new.

In addition to mirror time, Matthew also benefits
from Mommy being his mirror. When he was very
small I would sit him on my lap facing me.
(Now that he is older and too big to sit on my lap
facing me I get down in front of him face-to-face).
I choose a word or a sound and very slowly say the
word or sound with long, exaggerated movements
of my mouth breaking down the word into tiny
fragments.

Matthew was fascinated with this interaction
between us just like with the mirror time. We
did this (and still do this interactive learning
play) often. He will watch my mouth intently as
it moves slowly. Sometimes he will just watch,
then sign "more" when I am done. He may even sign
"more" many many times but he needs that repetition
and craves it. Sometimes he will just watch,
sometimes he will attempt to slightly move his
mouth, sometimes he will move his mouth and make
a sound. I always encourage him to try to make
the sound or word when I am finished by saying
"Matthew do it" and then give him the opportunity
to try it. Even if he just makes an attempt to
mimic in some small way, I praise him and encourage
him to continue to try to make the sound.

And, over the years it has helped Matthew learn
in several ways.

Through the hours spent in front of a reflective
surface, he learned to become aware of his own
legs and discovered that he had the ability to
move his legs and control them in different ways.
He began using his legs better.

Through a year of watching himself in the car
window reflection (nearly every day when I would
pick him up from school) and watching mommy SAY
“bye bye”, then trying it for himself or just
watching and maybe attempting to move his mouth
he said his first word.

That year of input in front of the reflection of
himself and Mommy in the car window with repeated
“bye byes” was crucial input for Matthew and what
he required in order to make connections, process
it and then be able to say it…his first word at
almost 6 years old.

Today, Matthew still receives wonderful input
from seeing his own reflection in a mirror
or other reflective surfaces. I welcome it,
encourage it and love it because it's his
own discovery and it serves a purpose and
aids in his ability to learn.

The art of reflecting back may indeed bring to
light some hidden consistencies you see in your
own child that open the door to a method and
discovery for how to more effectively help your
own child in self discovery, new skills and be
helpful tools for educational purposes.

Your own child may not be fascinated with mirrors
or reflections but there are more than likely
other wonderful ways and methods that they need
to help them learn.

I believe that if you pay close attention, allow
yourself to be open to the many things that your
child is doing (that may even seem or appear to
be a little unusual or different to you or I) and
if you look deeply enough you may very well
discover a valuable tool that your own child has
discovered for himself or herself that is just
right for them and exactly what they need to help
them process and learn new skills.

You quite possibly might even discover a brand, new
exciting teaching tool or method that works for your
child as a result of taking one step back and just
observing very carefully.

Discover Ways to Make Therapy Fun

There are definitely times when therapy for your
baby or child that has Agenesis of the Corpus
Callosum is hard work and it will probably
require certain movements and repetitions to be
worked on and practiced with your baby or child
based on your child’s physical therapist’s,
occupational therapist’s or speech therapist’s
instructions and advice.

With that being said, therapy does not always have to be all hard work and no fun though.

Look for and be aware of ways that you can incorporate ‘therapy’ into play time without either one of you feeling like it’s therapy. In fact, you’re probably already doing wonderful things with your baby or child that are actually helping them and building their strength without even realizing it.

In my own experience with my child, Matthew, who
has Agenesis of the Corpus Callosum, it IS possible
to accomplish a lot of good if you are able to
combine an activity that your child enjoys and slip
in an element of ‘therapy’ without either of you
knowing because it’s so much fun and you’re both
enjoying the playful activity so much.

Here are a few examples of what I did with my own
child who has ACC:

When Matthew was very little I would take him to the mall. I discovered that he really liked to throw pennies and coins into a big fountain. I would help him to the low rock wall area that surrounded the fountain and then place a few coins on the slate rock surface. Because Matthew was motivated and wanted to get to the coin and then throw the coin in the fountain he would try and try to pick up the coin and this play was actually therapy as it encouraged Matthew to use his pincer grasp and additionally helped him to learn to toss, drop and throw that coin into the fountain. Of course, the quarters were the easiest for him to pick up. It was wonderful to watch him and fun. I was so excited about it that when I ran out of little coins I would gladly give him all my quarters and empty my purse of change just to watch him having fun. He loved it, I loved it and there was an element of therapy taking place without being forced on him.

Another thing I did with Matthew was to take him to an indoor play structure. You know the kind…the ones with all those padded climbing mats, bouncy stations, cushioned slides and tunnels to crawl or scoot through. I always tried to take him when it was not crowded though so he wouldn’t get trampled on by all the other active and often times bigger kids playing and I always stayed right with him. It was a great place to help him with large motor activities. I would position him on his tummy sometimes or on his hands and knees and have him move up a padded hill to get to the top (with my help and guidance) and I put my hand on his bottom so as not to let him slip back down after all that hard work to move up just a little tiny bit. I would put him inside the tunnels and encourage him to continue to move through the tunnel by whatever means he was able to do so. I would take him into the really bouncy trampoline-like house and help him to try to use his legs to move and bounce. All of it was fun and all of it was work too but it didn’t seem like work because it was so much fun.

So keep in mind (when you feel like you’re not doing enough therapy) that you’re probably really doing a lot more therapy-related activities than you realize or give yourself credit for and be on the look-out for finding those motivational, fun-filled ways that you and your baby, child or your grandchild can have fun doing.

There is a time for therapy and a time for experiencing special time with your baby in the most natural and beautiful mommy/baby way. Don’t feel guilty when you are having your special time with your baby. Allow them to be a baby and experience all that comes with being a baby and learning and by all means enjoy that time.

Time with your baby is very precious. Finding that balance between therapy time and time for play and enjoying your relationship with your baby isn’t always easy when you have a child with Agenesis of the Corpus Callosum but it IS possible to do if you trust your inner voice and do what you know is best for your own baby, yourself and your family.

Remember your baby or child may have Agenesis of the Corpus Callosum but they are still a baby and your baby deserves to experience all of the wonderful things that a baby needs in order to thrive, learn and grow into the very special and unique person that God created and designed them to be.

Your input is meaningful, helpful and valued by readers. I’m just one mom offering my own thoughts based on my personal experience with my own child who has ACC. Each one of you has unique and wonderful information of your own to offer so go ahead and click on “comments” and share your own thoughts, ideas, stories and maybe even something that you have found to make therapy more fun for your baby or child and you.

graphic courtesy of http://christart.com/

Cherish Your Mommy/Baby Time

If your baby has Agenesis of the Corpus Callosum and is getting physical therapy, occupational therapy or other therapy related services, it is all too easy to get swept away and caught up in all the doctor appointments and therapies that your baby or little one is doing. If you allow it, you can even spiral right into those guilties for feeling like or thinking that you're not doing enough therapy with your child.

I've been there with my own child, Matthew, when he was a baby and I got therapy burnout real quickly! Matthew was enrolled in Early Intervention and received therapies in our home AND I also took him to outside private physical therapy, some occupational and speech therapies as well.

I am all for and highly recommend therapy services for a baby or child with Agenesis of the Corpus Callosum to help them but I also believe that it is extremely important not to turn into Therapy Mommy or Daddy and to remember that you are first and foremost Mommy and Daddy and you should cherish and spend that very special time with your baby and never lose sight of it nor feel guilty for embracing it with all your heart.

A LOT of Repetition!!!

That is one common thing I hear from many other parents who have a child with Agenesis of the Corpus Callosum...they need A LOT of repetition to learn a new skill. That is true for my own child with ACC, Matthew.

When Matthew was still a baby I had taken him to see his Neurologist. I was told something back then by his Neurologist that I will not forget. He said that it is not understood why or how but that when a child is missing the corpus callosum (the major communication connection between the right and left hemispheres of the brain) other pathways can sometimes be made with the help of therapies. Matthew has been in physical therapy, occupational therapy and speech therapy since he was a small baby and I believe that those therapies and A LOT of repetition helped him create other pathways and learn so many skills.

Whatever you do, do NOT give up or lose hope that your child won't do something that you have been working on for a long time. I have been in that place several times with my own child...almost ready to give up and then that sweet little boy surprises me everytime and he learns the very thing that we worked and worked on for months and months and sometimes a year or more. One day (usually when you think it won't happen and are close to giving up) something clicks for them, all that work, practice and continual repetition to learn to sit up, to crawl, to take a step happens right before your eyes when you pick them up from school and watch your 7 year old boy let go of your hand for the first time and take steps all by himself!! Matthew walked at 7 years old and I stood watching in amazement at my little boy taking his very first steps.

Nope...don't ever give up. Don't ever lose hope, don't ever think that all that therapy and hard work for months or even years isn't doing any good because it IS and you will see all that hard work pay off and be amazed and thrilled at what you are seeing your child do...right before your very joyful, tear-filled eyes.