Friday, June 26, 2009

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

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.


  1. OH Sandie, I just cried and cried through your entire post for today. I know exactly what you mean. When Brianna was born my aunt had a baby as well her baby had no brain issues but was extreamly preemie weighed less than a lb and had three surgeries... ok so both my kid and her kid got therapies same thereapies child stim and physical therapies. Her little girl (not that I am mad about it I am very happy for her) is running around talking eating like a typical child. While my daughter is still learing to crawl... yet the samke therapies made a world of difference for her but did little for Brianna? No I honestly belive therapy helps sure but it is the child that does what he/she does at the time they are ready not when a therapist says she should be doing something or when we want them to. Our kids will do exactly what you said what they are meant to do and will do it at the time they are ready. Thanks for this great post sandie.

    Araceli, mom to 21 month Brianna with complete ACC

  2. Araceli,
    Thank you for your comment and for
    saying so beautifully something that
    I failed to mention...that I am also
    happy for the child who makes leaps
    and bounds and progresses. I also
    don't have any bad feelings toward a parent who comments that the therapies are why their child made all the progress because I also know that my own child, Matthew, is where he is today because of the great therapy program he had. I'm sorry that the post caused you to cry. I can relate to your feelings and like we both said...our kids are all different, they learn what they learn when they learn it and all we can do is help them to the best of our abilities, pray and be patient. :)

  3. Thanks for your post Sandie! I bounce between feeling like we are doing everything possible for Brett and not enough while trying to balance with activities that don't involve therapy and doctors. It is tough not to compare him to his
    brothers since he is a triplet, but you are right - whatever Brett's achievements will be are what God has always intended for him. I appreciate the reminder and knowing
    we are not alone in all of this! Jody

  4. Jody,
    Thank you so much for your comment
    and the things you shared. It definitely is not easy to find that balance that is so necessary. I know God has a glorious plan for Brett's life just like he does for his brothers and for each and every child. :) Thank you again for your input.


  5. Hi Sandie,

    Wonderful post. Just a note from a therapist's point of's always hard when interventions work for one child but are completely ineffective for another. But that just provides motivation to look for something that does work, so that every child reaches his or her full potential. You are an amazing mom to Matthew, and he is so lucky to have such love and support in his life.

    Rachel :)

  6. Rachel,

    Thank you for your comment and for the very nice things you wrote. I appreciate how you share your point of view as a therapist. Thank you bunches and bunches for all you do to help Matthew through your music therapy. :)


  7. Hi Sandie,
    My daughter Madeline is 16 months with C-ACC and Hydrocephalus. Madeline is doing well with fine motor and social skills but she is still behind in gross motor and communication skills. Madeline has pt at home through Birth to 3 program twice a month and she is progressing at her rate but progressing well. I try not to compare and to love her the way she is. I do find my self comparing her to other children her age but I know that she will do things at her own pace.
    Hearing your story is how I feel with the pain of not knowing if I am doing enough. I work full time and have two other children 2 1/2 and 6 and have guilt of not knowing if I am doing enough. But the days that she does new things I feel at ease.
    I find that all children who have ACC are not the same and progress at different rates and speeds. I feel blessed to have her in my life. She brings a smile to my face everyday. I just pray for patience and hope to be able to give her the tools she will need to live life full and happy.
    Thanks again for your post.

  8. Hi Susan,

    Thank you for taking the time to comment and for sharing your own personal thoughts and feelings about therapies, developmental delays and dealing with the emotions that happen as a result of trying to juggle all of that and still maintain a balance in your life and family.

    I love that Madeline brings a smile to your face everyday. What a beautiful blessing from God.

    Madeline sounds so sweet and there will be many more days when you feel at ease because she WILL keep doing new things.


  9. My son is 7 and has complete ACC and hydrocephalus. He has met all milestones and is a miracle! He has more problems with socail immaturity, meltdowns, ect...He is very talented and is very athletic. We have had several issues with the school system working with us due to transition problems in the morning. This year is better than last year, but there are no predictors to the good mornings or bad. We just take it day by day and are thankful of how lucky he is.

  10. hi,
    my daughter is 11 years, and have a partiel ACC, i dont speck english very well but i anderstand
    she speak et learn at ordinary school, but now she habe a problem with social abalility, she dont have freinds, she dont respect a sociel rules, i search a method to help hem for social ability
    i am from morocco
    Fatima, mom to kawtar

  11. Hello Fatima in Morocco,

    Thank you for your comment about your 11 year old daughter who has partial ACC. I understand your English very well. I'm so sorry that your daughter is struggling with social rules and skills and that she doesn't have friends. Having friends (and at least one very good friend in school, and in everyday life) is so important. Please know that your daughter is not alone and that there are a lot of children with ACC who also have the same challenges as your daughter is having.

    Some kids who have ACC (in the USA) receive help in school by attending weekly sessions led by a school psychologist and/or a speech therapist to work on learning social skills. Some parents choose to take their child to a private psychologist to work with their child on social skills. Social Stories are another method that can sometimes be effective in helping a child with ACC learn how to interact in different types of social situations.

    I don't know if you have any support or if you are involved in an ACC support group.

    I would like to send you (by e-mail) some ACC and education as well as social skills information that includes some resources, but I don't have any way to contact you. If you would like to receive this information, please send me an e-mail and I will get it to you as soon as possible. Just so you know, we are going out of town and will return back home at the end of next week (May 25, 2013).

    My e-mail is:

    Sandie, Mom to 19 year old Matthew

    P.S. I am also including a link to an ACC Social Skills & Challenges document for your review:

    ACC Social Skills & Challenges


I am very interested in reading your comments and
look forward to hearing from you. Thank you.