Aphasia: Samantha

a.     How does it feel to be the parent of your child?

      Having a child with aphasia is one of the most heartbreaking and frustrating things you could possibly imagine.  My 10-year-old son, Easton, was born a beautiful and healthy boy.  Life couldn’t be more perfect.  That is, until one rainy day in October when Easton was in the third grade.  We were driving home to visit family up north, when out of nowhere the car in front of us slammed on their breaks on the freeway.  My husband slammed on his breaks, but the slippery road was not able to stop us in time.  Our car collided full force into the car before us, causing my son’s head to crash into the side window.  While I am thankful that he is still with us, the injuries to his head have caused aphasia, drastically changing his, and our, way of life.

     Since the day of the accident, Easton’s life has been completely altered.  My son, who had excelled in school prior to that October, lost the ability to understand words and use language.  As a parent, there is nothing more devastating than to see your child go through this.  I couldn’t even have a conversation with my little boy anymore.  The doctors told us that when he hit his head, there was great damage done to the left hemisphere of his brain, which controls understanding of word meaning, formulation of spoken and written language, and word usage. 

     Also heartbreaking, is that there is no cure for aphasia.  All we can do is constantly work with him on saying and understanding words by using flashcards or games and with consistent repetition.  It is very tiring and so much more work than the easy conversations we would have before.  It’s almost like having a baby again but even more difficult.  No matter how hard it is, I would do absolutely anything for my son.  He also sees a speech therapist, who really works on his speech with him.

b. How is your child developmentally the same or different from other children at the various ages?

     While Easton was above average before the day of the accident, he now has a great deal of trouble with any form of communication.  He is by no means at the ability of his peers in his 5^th grade classroom.  Easton has fluent aphasia, which can also be called receptive aphasia or Wernicke’s aphasia.  This means that his specific case has the most difficulty with auditory comprehension, as well as word finding, confrontation naming, and reading and writing skills.  Fortunately, his speech is fluent, but he can only get to the point in a conversation, missing many specifics.  We are happy that he is still able to be in the general education classroom, as we believe that interaction with his peers is best to aid in the progress of his communication skills.  Almost all of the children knew him before the accident and are more than understanding of the implications of the disorder, and are extremely helpful.  Easton has anosognosia, which means that he is unaware of his communication errors.  We sometimes debate if this is a good thing or bad thing.  Overall, Easton is probably kindergarten level or lower compared to the rest of his 5^th grade class.  While this is devastating, we celebrate each day’s progress.

c. What professionals/agencies do you deal with?  What services are available to you and your child?

     Immediately after the accident, when figuring out what had happened, we spoke to a variety of doctors, primarily neurologists and physical therapists.  After this life became normal to us, we hired the person that Easton visits on frequent basis.  This is his speech-language pathologist, Kerry.  Kerry helps Easton with all areas of communication, as well as helps him deal with his disorder.  She sees him a few times a week and is vital in his academic and social progression.  Now that he is back in school we often speak with the special education specialists, at the school and district level. 

 d.  How did you find out about the above services?

     After Easton’s accident, we did a lot of research on his condition.  Things we could do, people we could talk to, everything.  The website aphasia.org offers a variety of specialists for this impairment in regards to neurologists, occupational therapists, physical therapists, physiatrists, psychologists, social workers, and speech-language pathologists.  This was extremely helpful to us.  Our doctor also gave us good insight as to who would best suit him and our family.

e. What financial burden, if any, are you experiencing?

     Having a speech-language pathologist has become very expensive, as necessary as it is.  Easton sees Kerry twice a week, and sometimes more if he needs it.  SLP’s vary in price but average at about $100 an hour if done through a private business, and often more through a hospital.  Our insurance covers some of this, but not nearly enough.  Some families have to end their work with their SLP when third party reimbursements run out.  The aphasia website gave us more details as to what we can do, if for some reason we can no longer afford it.  One idea of this is to possibly volunteer for a clinical trial or research project.  We have also kept in contact with the families of other children who are going through this same issue. 

f.  What other information do you want to share?

     What makes aphasia so difficult, is knowing your child’s prior behavior and then seeing them struggle to make sentences.  This condition can happen to anyone one at anytime for a variety of reasons, changing their lives forever.  We are so lucky to have an amazing speech-language pathologist as well as an incredible teacher who truly works with Easton and wants to see him succeed.  They find ways to make him learn.  For example, visuals with short sentences and facts help him so much more than an informative paper would.  Any child can succeed and grow with the right amount of love and support!


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