When Zack’s intesines allow us to, Jim and I try to tackle some of the other complicated issues he faces. Lately we have spent an incredible amount of time thinking about Zack and his learning challenges. I thought I would spend some time highlighting a few of his learning disabilities to help our friends and family understand some of the things he deals with every day in addition to his medical concerns.
Zachary showed signs of dyslexia from an early age. He was late learning to speak, had a lot of trouble learning to say his alphabet, could not recognize his letters or numbers, had trouble learning the sounds letters make (still struggles with this), and could not rhyme.
Zachary was not officially diagnosed with dyslexia until second grade when he had neuropsychological testing to help us figure out what learning disabilities we were dealing with as he was falling farther behind in school. This is very typical for kids with dyslexia as many children not diagnosed until third or fourth grade. This delay in diagnosis is significant because early intervention in a multisensory, sequential, structured literacy program used with fidelity is crucial.
“Early Intervention Is Critical: When intervention is delayed, it takes four times as long to intervene in fourth grade as it does in the late kindergarten because of brain development and because of the increase in content for students to learn as they grow older.”
National Institute of Child Health and Human Development
In addition to dyslexia, Zachary was also diagnosed with dysgraphia. Dysgraphia is a specific learning disability that affects all aspects of writing. Zack has issues with his fine motor coordination leading to illegible handwriting, inconsistent spacing, poor spelling, and difficulties in the entire writing process including composing sentences and paragraphs.
And because Zack does everything differently, he was also diagnosed with dyscalculia. Dyscalculia is a specific learning disability in math. Kids with dyscalulia struggle to learn math facts, have trouble identifying symbols and using them correctly, and a whole host of other things. Zack struggles with it all.
You may be wondering how on earth Zack tackles learning . That is a good question. Learning is incredibly taxing for Zack. He spends the majority of his day with special education services. He has been working extremely hard at reading. No, seriously…..it is extremely hard and we are really proud of his determination. After years of intervention, he is beginning to understand how to read and can even read almost at grade level.
While he is beginning to understand how to read, spelling is another thing altogether. Not being able to is spell is frustrating for him. Zack is fortunate that his school has provided him with assistive technology in the form of a computer with word prediction software. The technology is great, but Zack still struggles sounding out words. This makes using word prediction software difficult. Zack is learning to sound out words when he can see them on paper, but trying to spell something from memory has been agonizingly slow and this ability is needed to use the word prediction software effectively.
Zack is becoming quite adept at using his computer in other ways. So much so that he was able to fix a problem with the church check-in program a few weeks ago when all of the adults were having issues. He is also learning basic coding through a program called bitsbox that he works on with his dad. He needs lots of help with the numbers, but he understands the concept. I am getting sidetracked. Welcome to my brain.
Dysgraphia makes the physical act of writing incredibly hard. His fine motor skills are weak. He can write his name and other words by hand, but it is laborious and frustrating for him. In addition to stuggling with the physical act of writing, dysgraphia causes issues with language processing, visual-spatial issues, spelling issues (double whammy), grammar issues and problems organizing written language.
To help Zack with his dysgraphia, Zack has several accommodations. He is able to use his computer, but trying to get his thoughts from his head onto paper, even with typing, is daunting. One of his accommodations is a human scribe. This has helped Zack begin to form sentences and basic paragraphs, but he needs heavy adult support.
Dyscalculia is the third of the “D” learning disabilities that Zack faces. Needless to say, math is not Zachary’s favorite subject. Adding and subtracting numbers without a calculator is nearly impossible for him. I am sure you can guess how multiplication and division facts are going. At one time, he knew some of his multiplication tables, but not anymore.
Jim and I have not given up on working with Zack on his math facts. Zack learns best with lots and lots and lots of repetition. Not just with math, but in every area of learning. And so we work on these skills at home in hopes of helping solidifying them – one day.
In addition to all of these, Zack also has ADHD. Zack’s ADHD is not typical in that it does not respond to medication as it should. This causes Zack to have to work incredibly hard to focus in school. It takes more energy for Zack to do his school work than a typically developing child. He needs frequent breaks because his brain cannot focus for long periods of time. This makes his other learning disabilities even more challenging to address.
Add to these things Zack’s medical issues and his anxiety and his learning profile is extremely complicated. And frustrating. And exhausting – not just for Zack, but for everyone who helps him and for us.
Many days when Zack gets home from school he melts down. He tends to save most of his frustration for home, although lately some of his frustration is being seen at school. This makes me sad because outside of school Zack has a very kind and happy heart. The other day Zack came home upset about getting in trouble at school. I found him petting Cap in the dog kennel singing one of his favorite songs, Even If, by Mercy Me. He felt better after that. (I am so grateful for our furry service dog in training.) I tried to be inconspicuous and let him have his time alone, but it was such a precious moment that I took this video:
Interestingly, this song was written by Bart Millard, the lead singer of Mercy Me, about his son’s life long battle with diabetes. He says of the song,
“My son, Sam, is 15 years old, and he’s been a diabetic since he was 2. When you’re a parent of a child with any kind of chronic illness, these things don’t go away. You have a lot of good days, but some days you feel like you’re losing bad. I was in the midst of one of those bad days when ‘Even If’ was written.”
Although Zack was sad about school on this day, I find his love of this song appropriate. Heaven knows I have been known to sing it when Zack is not feeling well. Some of the lyrics:
They say it only takes a little faith/ To move a mountain/ Well good thing/ A little faith is all I have, right now/ But God, when You choose/ To leave mountains unmovable/ Oh give me the strength to be able to sing/ It is well with my soul. … I know You’re able and I know You can/ Save through the fire with Your mighty hand/ But even if You don’t/ My hope is You alone
Jim and I have spent a lot of time telling Zack about his beautiful brain and how it learns differently. We let him know that we realize he has to work much harder than his classmates, but that he IS capable of learning and that we are here to help him. We also talk a lot about how working through hard things makes you stronger.
In January there was a Dyslexia Advocacy Day in Annapolis, Maryland. The purpose of this particular Dyslexia Advocacy Day was to talk to legislators here in Maryland about the Ready to Read Act of 2019 and to gain their support for this legislation by telling our personal stories with dyslexia. Zack heard me talking about going and asked if he could come and speak. Sadly, he came down with a fever and, well, that was the end of that dream…for now.
Even though we were unable to attend, Zack had me write his story in his words to share with our State Delegates. I do not know if we will ever hear back from any of the delegates, but I love that he is learning to find his voice and speak about the things that are important to him. And that, I believe, will be a skill that will help him accomplish great things.
Hug your babies!