Tuesday, July 27, 2010

ACC - Meeting Milestones

Reach for Hope...then hold on to it always.

When your child has Agenesis of the Corpus
Callosum one of the most difficult things to
deal with is coming to terms with the unknowns of
ACC and learning how to deal with the uncertainty of
when your baby/child will meet his/her milestones.

When my child, Matthew, was a baby I had to stop
reading all of my 'what to expect' baby books for a
typically developing baby and put them away --
out of my sight.

I found it too difficult to read those baby books
for typically developing babies because my child,
who has Agenesis of the Corpus Callosum, was not
measuring up to those 'typical baby timelines'
for milestones.

Reading those books just caused me more grief.

In fact, back in 1998 this is what I wrote:

"Good-bye to baby books and their developmental
milestones timetables...
Hello sweet, precious child who will teach me more
than any book ever could!"

The other day I read a note on one of the ACC support
groups that I belong to. It was from a Mom who
I know that has a 6 year old child with ACC (plus other
medical conditions) in reply to another mom who has
an 11 month old baby with ACC.

The mom of the 11 month old baby with Agenesis of the
Corpus Callosum expressed a familiar feeling that I am
quite sure many other moms--myself included--will be
able to relate to:

"I'm getting a little down lately as it really seems
like its coming along so slowly and I'd just like to
see a BIG milestone!...It's so hard not to know what
his prognosis is."

I asked Sabra, the Mom of the 6 year old child, if
she would be willing to allow me to post her reply here
for others to read. She wrote back to me:

"Of course you can use my post, if I can help at least
one other parent then it is worth it. You can also feel
free to post my email address, if they want to contact
me for other questions or concerns."

This is her reply to the mom of the 11 month old baby
who has ACC:

"I have a beautiful, precious, and unique 6 yr old
daughter with partial ACC, hydrocephalus, etc. We
found out about Emily’s ACC at 5 months via MRI for
her hydro. I was told absolutely nothing in regards
to her ACC just that she needed to see a neurosurgeon
in the next 2 weeks.

Emily’s first 2 years were the hardest, just as one
doctor told me they would, with all the doctor’s appts
and therapy but it would get better once she turned 3.
At the time I didn’t believe him because we were seeing
doctors and therapist 4-5 days a week and I didn’t see
any end to it. But he was right, once she turned 3, she
started seeing her doctors every 3-6 months and now she
sees most of them once a year except her eye doctor she
sees every 6 months.

Emily taught us to appreciate the baby steps she took in
her development. Emily also started EI (Early Intervention)
at 9 months until she aged out at age 3.

Here is a little timeline of when Emily reached

Sitting up= 1 yr

Crawling= 15 months

Walking= right before she turned 18 months

Talking=she said 3 words at 2 ½ years and then all
of a sudden at age 3, she started talking in 3-4
word sentences

Undressing self= 3 ½

Dressing self except shoes and socks=4

Putting shoes on byself(Mary Jane and slip on)=4 ¾

Able to put socks on by self= 5 ½

Self feeding= 18 months

Using utensils= 3 ½

Imagination play= 4 ½

Interactive play versus side by side play= 4

Writing her name= 5

Beginning reading=5 ½ but is slowly progressing,
math is her strength.

I have learned that any milestone she reaches or
does is a huge deal for us even if it is considered
normal development with other families. We have
learned by experience and talking with other parents,
our kids have to work much harder to do anything or
learn anything. I also discovered when Emily was in
EI if she was working on one skill, the others were
ignored or on the sideline, her brain is able to only
work on one skill at a time. So while we were working
on her feeding, her speech was nonexistent-but she was
still taking everything in and filed away to be used
when the time was right. Emily was blessed with having
her older siblings who loved to help her learn new
skills. Emily has taught them empathy, compassion,
understanding everyone is unique, big support for each
other, appreciation of achieving something that was
hard, and unconditional love.

You will be amazed at what your child is going to do.
You are going to look back in a few years and realize
how much he did accomplish. Have you taken him to get
his eyes checked? A good pediatric ophthalmologist or
neuro-ophthalmologist would be good. Emily’s vision in
itself is fine but she has no stereopsis vision-she
cannot see in 3D, and binocular vision disorder. She
also has Strabismus which she had 3 surgeries to correct.

It was recommended by parents on another group to get
her vision checked since it is midline and anything
midline can be affected.

When Emily finished Kindergarten (KG) this year, she
was given the Most improved student award, I was so
proud of her and how far she came this year in KG.
She also received a Math award, being able to count
to 100, and a Reading Award for recognizing the letters
in the alphabet and the sounds, and had the gold star
on it for being able to read all of her Word Wall words.
So if I have to pinpoint the first Big milestone, it
would have to be her KG year. Even her special ed
teacher, her OT, and regular ed teachers all said she
was not the same child at the beginning of the year.
They were even amazed at how far she came. To be honest,
when we had our first IEP meeting before KG, I asked
them if I would be able to hold her back if she was not
ready to move on to 1st grade. I was prepared to have
her repeat because at the beginning of the year, she
was really way behind. She seems to prove me wrong
every time. She was promoted to 1st grade with minimal
assistance, she will have resource for language arts
block only and may only need it the first 9 weeks and
the rest of the time she is in a general ed classroom.
She is still socially and developmentally behind about
a year to a year and a half but when I look at where she
was and how hard she had to work to get there, I think
she is perfect. It was recommended when I first joined
the ACC group, was to throw out the developmental
timeline, Emily had her own and would do them on her
own time. We just use it to get services she needs.

The hardest part for me was to not compare Emily to
other children her age or younger who were doing things
she couldn’t or with her own siblings.

If you have any more questions or want to email me,
please feel free to do so at weimerse@cox.net

Before you know it, in a few years this will be you
posting to a new mom your experience with raising a
precious and wonderful child with ACC. You will sound
confident and will be able to give the new parent help.

I hope I have helped you with sharing my journey with
raising a child with ACC. I have to say it is never a
dull moment and when you least expect it, it will happen.
It is also recommended to play music all the time-good
for brain development."

Sabra, mom of Emily 6 who has partial agenesis of the
corpus callosum, colpocephaly, arnold-chiari 1 malformation,
sensory integration disorder, strabismus and hydrocephalus
w/VP shunt, and mom to four other children.

Thank you so much, Sabra, for your willingness to
reach out to others and offer help, hope and support.

Look for signs of hope...they are there and
do exist...be sure not to overlook the small
signs of hope while you wait for the big


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