20 April 2016

New diagnosis (but this time not for Bennett)

A few days after Bennett came home from the hospital in February, I gathered up all my strength and took Oliver overnight for a 3-day psychoeducational assessment in Dallas.  (Psychoeducational assessments are psychological tests, like a QI test, for example, used to analyze the mental processes underlying a child's education performance.)

My mother suggested I give myself and our family a break and reschedule the assessment for another time.  Surely a traumatic two-week hospital stay would be enough to warrant cancelling the appointment, she said.

But I explained to her that as much as I needed rest and truly didn't want to go, I knew I needed to move forward for Oliver's sake.  Rescheduling the appointment would only delay getting Oliver the help he might need.  I had been willing to move heaven and earth for Bennett over the last two weeks.  What I did for one child, I wanted to do for the other.

Not only did my mother end up supporting my decision, but she even offered to help me fill in the gap by staying in Waco to care for Bennett and Avonlea while Brian worked and I went with Oliver.

Although CF has been our family's biggest battle, Brian and I have watched our oldest child suffer quietly for a long time.  I was ready for some answers.

Play therapy for separation anxiety and severe sleeping issues began at age 3 for Oliver.  We tried medication at age 6.  By 1st grade, Oliver began loathing school and showing academic concerns. In 2nd grade, we changed from a traditional school model to a Montessori school model to see if that helped his enjoyment of learning at school.  But his struggle in school, his separation anxiety and his inability to sleep in his own room all continued.

We needed answers.  We decided to have Oliver undergo psychoeducational testing so we could get a better handle on what might be going on.  We were blown away by the results.

Oliver has been identified as having dyslexia (likely dysgraphia too) and as being gifted.  We were able to see on paper what we already knew in our gut: Oliver is very bright but he also really struggles.

Reading is challenging, writing is challenging, spelling is challenging, focusing is challenging, and organizing is challenging for Oliver.  You'd never know because he is able to use his great strengths to hide his great weaknesses.   Oliver's input of data is effortless but his output is fractured.

Oliver has a fantastic ability to verbally understand above his level.  But, if asked to demonstrate what he knows, he can't always do that in a traditional way.  This is what it's like to have a learning disability - to have a part of the brain that works so efficiently and then have another part that struggles so much.  When not supported, it can be a frustrating existence.

Oliver's issues have been ongoing for years.  I have shared some about it here, here and here.  I have thought long and hard about sharing our newest understandings about Oliver publicly.  But the reality is he is already decided to be public about it (if you don't believe me, ask his dental hygienist and his hairdresser).  And, I'm OK with that.

I think there is something important about being open about these struggles.  Shame grows in the dark corners.  There is nothing to be ashamed about with regard to having CF, dyslexia, learning challenges, anxiety, depression...the list could go on.  These are very human things.

But what I have found fascinating about receiving Oliver's new diagnosis is how similar it is to receiving Bennett's diagnosis.

With Bennett's diagnosis, I went through shock and then came to acceptance.  I spent many months late at night ferociously educating myself on his condition.  I immediately began to implement therapies and identifying experts in the field.  I joined communities of people dealing with CF so I could connect quickly to allies who understood what I was going through and could guide me through the next step of the journey.  I began to learn new vocabulary and ask thoughtful questions.  I hit roadblocks and had to learn to overcome them.  I grieved.

Oliver's diagnosis has been no different.

The first year of Bennett's diagnosis was the hardest for me.  CF has a large learning curve.  It took me a full year to understand his diagnosis and become confident in my ability to coordinate his care.

I am hopeful it won't take me so long to come to a similar place with Oliver's learning disability diagnoses.  But I am thankful that I can look back on our journey with Bennett and remind myself things will naturally improve as our family acclimates to this new diagnosis.

Like CF, dyslexia looks different in every child. Like CF, dyslexia is often unseen and unknown. Like CF, many people know about it but don't know what it's like to live with it.

We have already placed Oliver with a skilled dyslexia specialist who is working with him one-on-one.  We have a great psychologist and a fantastic psychiatrist working with us and him to find ways to support him with issues of anxiety.  I have identified some really great moms who have children with Oliver's diagnosis than have been hugely helpful.  And Oliver's school and sweet teachers are working very hard to support him in the classroom.

Things will continue to only improve as Oliver becomes a stronger advocate for himself and can tell us all better what he needs.  I'm just in the thick of it right now - at the beginning of it all and it's hard.

Parenting is hard.  Having two children with special needs is hard.

I don't always know what is best.  I don't always have the answers I want.  I don't always know how to balance being a mom, being an advocate and being a support to my child's growing independence.  I don't always know what is normal, not-normal, acceptable, not-acceptable, good or best.  And living in that space of figuring it out is like being blind in the dark crawling on my knees feeling my way around.

But Brian and I embrace the gift that children with special needs provide.  Having special needs regularly reminds us to be appreciative when things are easy, to be kind to others even when things are different for them and to see God's creation as being beautiful and wonderful in all ways.

Life is a beautiful mess and having children who struggle - one who struggles to stay healthy and another who struggles to process the world in the same way most of us do - reminds me of these things daily.

It's probably most difficult for me when the variety of systems in which we live and work daily don't always account for and even support these differences.  But while I'd much prefer not to see Bennett or Oliver struggle, I recognize there is a gift embedded in each challenge.

I often tell the boys: "you do hard things well."  And they do.  Our family does hard things well.  But, just to be totally transparent, we do hard cries well too. :)


  1. Love these words:
    "I think there is something important about being open about these struggles. Shame grows in the dark corners. There is nothing to be ashamed about with regard to having CF, dyslexia, learning challenges, anxiety, depression...the list could go on. These are very human things."
    I think that is one of the things I love the most about you...not afraid to share the beautiful mess! At the same time, I am so sorry to read these words knowing this is one more struggle and burden for you to bear. I'm praying and I'm available. Love you friend!

  2. Hi Breck,

    I have been following your blog for a long time -ever since I began tutoring two brothers with CF, both with dyslexia! They are amazing kids. Their mom has gone through a lot dealing with CF and dyslexia. It is a long, confusing road! The most important thing is that Oliver knows that dyslexia also comes with many, many gifts that "regular" people don't have - creativity, visual-spatial skills (for some), artistic talent, out-of-the-box thinking and so much more! You could call it his superpower :)

    I work at a school for kids with learning differences - not disabilities! I'm sure your dyslexia tutor is great, but one thing you might want to check is if she has experience with the LiPS program, by Lindamood-Bell. This program teaches the mouth positions for making different sounds. For many kids, it has to come even BEFORE the most basic 2 or 3 letter word reading. I know a boy that was in 4th grade still reading at a kindergarten level. After a few months of LiPS, it's like language suddenly makes sense to him. He is starting to read! He is a lot older than Oliver, too, so Oliver has more time to catch up. That is great!

    I really, really REALLY suggested joining the Well Trained Mind forum, under the Learning Challenges board. The moms there are SO experienced with everything under the sun. You will get so much support there!

    Best wishes!

  3. I'm so glad you have a diagnosis and a path to helping him out! You are amazing mom


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