Growing with Your Child's Diagnosis, by Heidi Indahl

When my son was a toddler and preschooler he had all the classic early signs of higher functioning autism (known then as Asperger’s Syndrome).  An extremely bright child, he could be brought to tears for hours when his plate and cup didn’t match or when his favorite pair of blue footie pjs was in the wash. 

Formally diagnosed at the age of five, we didn’t investigate further neuropsychological testing until he was several years older.  At that time, I was not at all surprised when they also diagnosed him with dysgraphia. An early reader, writing was always a struggle.  I was caught off guard, however, when they also diagnosed him with dyscalculia. To my eye, he seemed to be doing fine in that area of our homeschool, although maybe a little slower to take in those basic facts. I adjusted a few things they suggested, however, and as he grew I did see him struggle more in math.  “Oh,” I thought, “that’s what they saw.”  By the end of 7th grade, he was barely functioning at a 4th grade level in math.  Fractions and decimals were out of reach and he still didn’t know his basic facts (so I thought).  Even with a calculator, his work was slow and often illegible. I wondered what we would ever do to get this extremely bright kid through! Then came 8th grade.  The year I give my kids official grades in preparation for high school.   The year he had to long write comprehension questions and decline greek nouns for a grade.  My brilliant child who was failing all his subjects because he couldn’t put what he knew on paper.  

The year he had to stand up in front of the church and write his name on the list of candidates for confirmation.   I sat by painfully as he struggled for almost five minutes to write his first and last name in wobbly cursive. Other kids and parents shifted in their seats wondering just what was taking this kid so long. In that moment, I decided it was time to talk about dysgraphia with my son instead of just making decisions about what would be modified.  We needed to come up with solutions that included his input instead of just the blanket list I had been given earlier.  

Together we brainstormed ways to help writing go better.  What could he write (vocabulary words) and what would be better to dictate (comprehension questions)?   He learned how to adjust the keyboard on the iPad to Greek letters so that he could type his declensions (allowing me to actually grade what he knows).   He built folders into notes for his work that I can pull up on my phone to grade whenever I need to. And then I brought up the math. I was afraid to talk about it because he had resisted the subject as a whole for so long.  He was so far behind! We talked about the writing and how hard it is for him. I mentioned that some kids have a hard time manipulating numbers in their brains and get confused while trying to work the problems out.  Since he had so clearly been able to articulate the struggle with writing, I was sure that he would have some insight for me when it came to math.

Imagine my surprise when his insight was, “Oh no!  Nothing like that.  I just can’t write the numbers.  The math is fine, but writing the numbers is the problem.”  I asked him to clarify and I asked more questions.   I had been modifying his math for dysgraphia AND dyscalculia for so long I didn’t think writing could possibly still be underlying issue.  Lower problem counts, more writing space, not requiring him to show all his work once I knew he could do something. It’s just the writing, he insisted. I decided to trust him.  We started using exclusively digital math curriculum, and now not only is he doing fractions and decimals with no struggles, but he is flying through the Pre Algebra module (the class that they told me would bring out the dyscalculia strongest even if we had been able to modify that far).  He is even tutoring his 5th grade sister on her math work- the very work he couldn’t complete last year. He and his dad have this new game going seeing who can double from two the farthest. Currently they are somewhere in the 6 million range. And he’s doing it all in his head. Knowing this child, if I had not asked about the numbers separately from the writing, he never would have told me it was just the writing.   Still autistic, that’s not the sort of information he offers up. Looking back I wonder if their math assessments somehow relied on writing or if because our curriculum did, maybe he was behind from that and they drew the wrong conclusion.   I can’t really know. What I do know is that when we walk out of a doctor’s office with yet another diagnosis, we only have one piece of the picture.  Sometimes that piece of information can help us as we create an environment for our child to thrive. Other times that information leaves us with more questions than answers. That information, however useful or not, is never a substitute for an alert and observant parent.  It took me five years to question a diagnosis that was obviously incorrect. One does not outgrow dyscalculia, it seems clear to me he simply never had it.  What he does have is dysgraphia that is a fair amount more severe than I understood and we are going to need to get that documented and evaluated again soon because he will need some modifications on his ACT/SAT and even into college.  We all know the dual-edged sword of benefits and limits that go with a label, particularly when it comes to the various learning and attention disabilities.  For me, I never grew past that initial diagnosis. I accepted it even though it didn’t entirely line up with my experiences with the same child. I didn’t reach back when the modifications they suggested didn’t solve the problems we encountered.  I didn’t reach towards my son soon enough to encourage him to be proactive in living with his own challenges. Of course it is rare that we would discover a subject thought to be a weakness was in fact a great strength.   In fact I doubt it will happen again and I’m certainly about to dispute all of the diagnosis that each of my special needs children has!   That said, I have learned an important lesson about continuing to see the details of the child more clearly than the specifics of the diagnosis.

Heidi is a country living Catholic mama from Southeast Minnesota.  She and her husband homeschool and raise seven living children on 8 acres of grass and mud puddles (plus a house). You can read her blog at www.workandplaydaybyday.com.