Why We Skipped Neuropsych Testing for my Dysgraphic Son and How You Can Too

Should I get a neuropsych evaluation for my child?

My son has dysgraphia. I know this because I had a friend, who is a former special ed teacher, do a screening on him.

He attends a charter school in the North County San Diego area and with this information he is receiving an hour of one on one help with a reading specialist specifically to address his spelling, reading, and writing.

We also are working on accommodations for him going forward so he can be successful in school and testing. Together, with the school, we will be constructing a 504 that will continue with him throughout his lifetime. We will, as a team, help him learn to advocate for himself so that he can have success in school and beyond.

How did I get his situation addressed without testing?

As a public school teacher I sat in on countless Student Study Teams and IEP meetings. I had students with 504s and pull out and push in services. Not once did I ever had a parent who had done outside testing. The school district is required to do the testing, when testing is needed.

However, I am at a hybrid charter school that relies heavily on parents as co-educators. It is a beautiful combination of homeschooling and in-school classes and my kids have thrived in this environment.

But, I wasn’t sure how to navigate the SST (Student Study Team) process. We had already spent $2,000 plus to get his IQ scores a couple of years ago. Neuropsych testing is at least that much. Private testing is not cheap and I really felt like we needed that evaluation to be taken seriously by the school.

So I began talking about it to everyone I thought might be able to give me answers. Should I have him tested? Should I not? I even spoke to a neuropsych who was more than willing to help me out and evaluate my boy, but at a cost. Finally, a friend of mine, who is a clinical psychologist, talked to me about my situation.

She asked me why I would spend the time and money on having my son evaluated when we already knew the outcome!

I am my son’s biggest advocate

I realized I am not a victim. I have a voice. My son is my responsibility and my school truly wants to partner with me in order for my boy to succeed.

I started with my child’s teacher. She knew him best. She recognized that there is a big discrepancy between what he can do and how he tests. She saw first hand the difference between how he speaks and what he can get down on paper.

She set up the initial SST.

I had never sat on that side of the table. I was the mom, desperately wanting what is best for my child. So, along with the school psychologist, the principal, his teacher and me, we worked out a plan for my son without me having to spend time and money on testing.

There is a plan in place for him and I am so excited and hopeful about his future.

What you can do

Since the beginning of my teaching career, more than twenty years ago, I have been saying the same thing to parents when facing an SST, updating an IEP, or working through a 504:

The squeaky wheel gets the grease!

What this means is, don’t stop advocating for your child.

  • Be polite, but persistent! (Loosing your temper will only hurt the process.)
  • Come into the meeting with your objectives clear in your mind and share them with the group.
  • Research different accommodations that will work for your child.
  • Come to the meetings with evidence of the discrepancies. (Samples of work are important.
  • Finally, when all else fails, there are professional advocates available. They can help you get what you need.

How We Discovered My Son Has Dysgraphia

Having gifted kids is an interesting journey. I have two and they are vastly different in their abilities and struggles.

My oldest has always shown signs of high intelligence. She talked early, wrote early, and read early. Her brother, who is only 22 months younger did not make all the same early milestones as his sister, but he made different ones. He was great at Legos, had an early sense of humor, and understood social situations and friend making.

Assumed Lazy

However, as he developed academically I thought that he also showed signs of laziness. His printing was erratic, which I attributed to him being a boy. He also had trouble spelling words, but I thought this was developmental and quite possibly lack of motivation. After all, he had a walking dictionary in his sister and she was always more than happy to help him spell any word he needed help on.

Other than his handwriting and spelling, my son seemed to be doing well academically. We homeschool though a hybrid charter school and as a former teacher I realized that his ability to comprehend stories and make inferences was off the charts. I also knew that he was great at math. However, I didn’t think he was gifted like his sister.

Missed Signs

Eventually his reading started to suffer. I realized he was having trouble reading multi-syllabic words. He could start the word off, but he got lost somewhere around the third syllable. Eventually I had him screened by our charter school’s reading specialist. She confirmed that his reading was well above level, but that he just needed a little work on spelling and decoding longer words.

Eventually the wheels started coming off the bus, but I was not putting the puzzle pieces together. Another one of my son’s teachers told me that he has such great ideas and that she stopped having him write down his stories and just had him use voice to text technology. His handwriting was still atrocious even after practice and his spelling was in no way improving.

We paid for an outside writing class for my son. I was not paying attention to how much I was helping him complete his writing assignments each week, until…my husband took me to Australia for three weeks. During that time my kids were staying with some friends of ours. They made sure the kids got some of their work done, but my son was pretty much on his own for his writing assignments. He didn’t have me to perfectly spell the words, place the commas and periods, and make sure each sentence was truly complete.

Diagnosis Discovered

When I returned from my trip, his writing teacher asked me if I had ever considered that my son had “stealth” dyslexia. I had heard of dyslexia, but what was the stealth part. Apparently kids with high intelligence can mask their learning disabilities by compensating. My son was in fourth grade and I had no idea he had a learning disability.

We ended up having him privately tested and found out that he actually has dysgraphia. It is a specialized learning disability that directly affects writing and spelling. Here are a few symptoms, and once I read them it all seemed to fit perfectly.

  • bad handwriting
  • poor spelling
  • hard time getting words on paper
  • hand fatigue when printing

Resources

Here is a great resource if you think your child may also have dysgraphia:

Since then, my son and I have been on a journey together that included mourning the loss of normal, accepting that he has a disability, and now working on ways to help him learn and compensate.

Our journey isn’t over, in fact, the adventure continues everyday!

A mom is faithful one hundred percent.

I married one of the Lema boys.

According to the stories from my husband and his parents, their boys were known for their smarts and their abilities on the soccer field.

Jose, my brother-in-law, took math classes beyond his grade-level and ruined bell curves in many of the classes he took. Chris went on to graduate from UC Berkeley and has been wildly successful in start-ups and now in public speaking.

These boys had access to Advanced Placement classes and Jose was even able to take some classes at UC Irvine as a high schooler. Even my nephews are smart and the oldest is finishing college early because of all the work he was able to accomplish while in high school.

But, that’s not me.

I grew up in normal classrooms and was never considered the head of the pack. I graduated high school in a rural farming town in which none of the students went straight to a UC. I went to a small, Christian private college that wasn’t accredited until just after I graduated.

I never took an AP class. I didn’t even apply to a UC college. And I certainly was never included in a “gifted and talented” program.

I always say my kids’ apples didn’t fall far from their daddy’s tree. Both of them resemble him and both take after him academically, and if you’ve ever heard Emily give a speech, she sounds just like him!

These kids are mine too.

Have you ever read the book Horton Hatches the Egg by Dr. Seuss? If you haven’t, or can’t remember the story, let me remind you.

Horton, an elephant, meets a flighty bird who has just laid an egg. She is sitting on this egg waiting for it to hatch, but she is bored and really wants to have a break. She convinces Horton the take over the incubation process while she takes a short rest.

That great big elephant climbs up on that nest and settles in for what he believes will be a short time. What he doesn’t know at the time is that the bird isn’t coming back.

Horton sits and sits, and never gives up. He is loyal to the little egg and despite adverse weather, teasing, and hunters, he refuses to move. He is even transplanted, tree, nest and all and ends up in a traveling circus of sorts. But Horton perseveres. Over and over he states, “I meant what I said and I said what I meant. An elephant’s faithful one hundred percent.”

In the end, the bird happens upon Horton, sitting on the egg in the midsts of a circus tent. She decides she wants her egg back and Horton isn’t so sure that’s a great idea. After all, she had abandoned this little egg. Right at that moment the egg cracks open and everyone is surprised to see that an elephant-bird emerges from the shell. This creature is more than half elephant because of the influence of Horton.

Horton is a proud parent!

horton

I am the Horton character in my kids’ lives.

I may not look like them and they may get their intelligence from my husband’s family. I say “may” because Chris regularly says they get more than half of it from me too. Regardless, in the end, they are mine too.

So whether they get their “giftedness” from their dad’s family or not, what I know is a mom says what she means and means what she says. And as a result, these kids are influenced and changed as much by me as they’ve been by their father.

I write this post for you, but also, in reality, for me. As a way to tell my story – to myself. To remind me of the critical role I play in their lives.

Are you a Horton too?

The sensitivities of gifted children

Disneyland, the Happiest Place on Earth!

I was so excited to take my little girl to this amazing place.

We had been visiting Palm Springs with my in-laws and the whim hit my husband and I.  We left my infant son with them and Chris and I drove the two hour drive to Anaheim.

The next morning we got up and took our sweet three year old to the Land Where Dreams are Made. When we walked in we observed that lots of little girls were dressed for the day. Little Belles, Ariels and Snow Whites where everywhere.

A Cinderella Dress

It was October and we decided to spend the money and purchase Emily a Cinderella dress. Cinderella was the only princess she knew and she could where the costume at Disneyland and again for Halloween.

There are several stores that cater to parents in our same situation and they were more than happy to sell us a very expensive dress with the warning that “all sales were final.”

We could NOT return this purchase!

No problem! It was an absolutely beautiful dress. Emily would look incredible and it was well made.

I took my sweet little girl into the nearest bathroom where we were both excited to put on this lovely dress. I took her clothes off and began to place the dress on her.

All was good for the first nanosecond until Emily began screaming like she was being murdered.

Everyone in the bathroom assumed she was mortally wounded and I’m pretty sure Chris could hear her outside. So, like any good mother, I reasoned with her and tried again. Emily doubled up her efforts and was able to scream louder than before.

I knew I had to cut my losses.

I didn’t want to be kicked out of the Happiest Place on Earth for abusing my kid. So, I placed her back into her soft, comfy clothes and came walking out of the bathroom.

Chris looked at me questioningly. I explained the scenario. I also made sure everyone knew that this dress WOULD be worn this Halloween!

After sewing a complete cotton lining into that outfit, she did in fact wear that costume on Halloween.

(That is not the only thing I’ve had to line. Apparently every dance costume is made out of the same torturous material! Consequently, she only danced in two recitals before we gave up the art.)

Those darn socks!

That was not the first time Emily had struggled with clothing, however.  Other than the tiny, very slippery socks that are put on infants, Emily has not worn socks.

EMILY. HATES. SOCKS!  With a passion!

I can recall sitting on our stairs with her, trying to get out the door on a day that was in the low 40’s, cajoling her into socks. The first try was never the one that worked. The seam wasn’t right, it hurt her toes, it was slightly twisted, nope, the seam again!  Argh! I tried wearing them inside out, I tried different types of materials, nothing worked.

Just wait…there’s more…

But Emily isn’t the only one of my kids who suffers from sensitivities.  Christian hates loud sounds.  Even as a tiny baby he would cry unconsolably when the noise level got too high.

When he would watch a movie as a family and Christian got scared, he would not cover his eyes, he would plug his ears. Eventually when he got old enough to go to the movie theater, he would always bring his baby blanket so that he could cover his ears.

And we learned that we can never be late to a movie because once the previews had started, Christian would NOT walk into a dark movie theater that was so loud.

He also had his own Disneyland terror and that was when the fireworks were set off.  I have a memory of him being on our good friend Seth’s shoulders to watch the show and Christian spending the entire display with his head buried in Seth’s sweatshirt just waiting for the loud noises to be over.

It’s not just us

I have since read and learned that many gifted kids have sensory challenges.

Our kids clearly have auditory and kinesthetic issues. In a previous post I’ve talked about Emily’s strong sensitivity to strong emotions.

Some of these issues can be debilitating and it is so important for me to know my kids and their limitations.

I know how Christian struggles and that it affects him at school. He cannot concentrate when there is noise. His performance plummets and he will dissolve into a whining, crying mess.

Everyone in our family knows this struggle and on our best days we try and help him be successful by providing him with quiet or giving him headphones to use so he can concentrate.

For Emily, I look for clothes that are tag-less and are soft to the touch. Last year I even found socks that are toe-less. Yep, that’s right, toe-less socks!

We have learned that she can brush her hair in the shower with conditioner on her hair. That lessens the amount of physical pain she feels when her hair is brushed. And I also will ask her to leave the room when Christian is going to be disciplined because she can’t handle the extra emotion in the room.

As parents, we know that each of our kids have idiosyncrasies. Kids come in different shapes and sizes and have varying challenges and issues.

These sensitivities are the physical reminder that even gifted kids have issues. And I’m thankful that they constantly remind me to give grace to every child I interact with, gifted or not.

Routines help gifted kids

It was a Tuesday morning and my kids and I were trying to get out the door to our Latin and writing classes.

Tuesdays are particularly hectic because not only are we at these classes from 11:00 am to 4:00 pm, which requires us to bring lunches for all three of us, but we have to be at Kung Fu, in the neighboring city by 4:30 – 4:30 is when they have to be changed into a uniform, in sparring gear and ready to roll.

Read that again. It’s one sentence. Does that tell you enough about Tuesdays?

That morning we weren’t feeling it

In fact, we were snapping at each other and the kids were having a hard time finding parts of uniforms and homework assignments.

I was getting grumpier by the second and the kids were following suit. Eventually we were all blaming each other and feeling stressed out and the day had only just begun.

As we drove to class, I took the opportunity to reflect upon what had just happened.  We brainstormed ways to remedy the situation for the following weeks.

With a few prompts we all decided that creating a routine would help us.

I am happy to say that now we begin preparing for Tuesdays on Monday afternoon.

We have made a routine

The kids have two bags to pack, one for school and one for Kung Fu.

When they get home from school on Mondays, they are to empty their backpacks and repack them with the binders needed for Latin and writing.

They are to check that their homework is finished and that the pages are stapled appropriately.

Next they pack their Kung Fu bags.

This step is tricky and I have held a boundary of not packing this bag for them.

They know what they need and are to pack each important piece of the uniform.  (They have forgotten integral parts, like pants and t-shirts.  I have held a strong boundary and not “saved” them by running home and grabbing the forgotten items.)

Lunch packing has become a group effort.

We are in a much happier place when we do this part of the routine and we enjoy doing it together.

This routine is fairly new.

We are still working out the kinks, but each week the routine gets tighter and cleaner.  The kids see the benefit of the routine and know that they do not want to return to the out of control mornings that once were happening.

Routines have helped us from the beginning

If I think about it, routines have been important for us since the beginning.

Early in their development I set them on routines for sleep and for eating. I’d read a book called “On Becoming Baby-wise” and it made sense to me.

My kids took to the routines well. We fed the kids on waking up, played for a bit and then I taught them to self-soothe to sleep.

Later, we had a strong bedtime routine that included dinner, quiet play, bath, snuggles, books read together and then lullabies while we rocked before being put into bed awake, but drowsy.

The kids knew where the routine was leading and by the time they were placed into bed there was rarely any fuss.

Predictability helps gifted kids

The predictability of routines seemed to really benefit my kids.

I’ve been using them from the beginning and when things are starting to fall apart that is one of the things I look at first.  Do we need a new routine or does the routine we have need to be tightened up or changed?

In fact, we just had to adjust our bedtime routine to work for my growing children.  We always read together at night.  We love that time together.  Then I would send the kids up to brush their teeth and do whatever else needed to be done in the bathroom before they were tucked into bed and prayed for.

Just recently, however, the kids started fighting in the bathroom.  We had a meeting and decided that this routine wasn’t working anymore.

The routine has changed so that neither child is upstairs in the bathroom at the same time, and we are all happier for it.

Lots of kids and adults benefit from routines.  Kids with sensory issues, fast processing speeds and strong emotions seem to really require routines to help them interact and succeed in life.

You’re not alone

Today I got to have coffee with a new friend.

I was introduced to her because she has a child who is similar to mine.  Her little guy is only four and they are getting ready to embark on the daunting journey of finding an educational program that works for their particular child.

I was excited to have this conversation.

The idea of helping someone along the path is something I really value. Throughout my tenure as a mother I’ve looked to others for advice and ideas on how to do this thing called parenthood. Especially with kids like mine.

I thought I knew what I was getting into

You see, when Emily was a baby I read lots of books.  I knew stages of development and milestones we could expect.  I understood that each child was unique, but most followed a structure of growth that was fairly predictable.

However, Emily didn’t exactly follow that path.

She made physical milestones along the way and was growing into a healthy baby, but there were other ways that I observed that she was different.

Emily loved books from a young age. She would sit on her nursery floor and “read” these books, page by page.

She was 10 months old.

Her favorites were books with other babies. We bought her books to help learn baby signs. It’s sign language for babies that can’t yet talk.

She took to baby signs like it was a life-line.  She meticulously looked at the books.  On each page she would look at the baby doing the sign and she would do one of two things.  She would either make the sign, because she knew it, or she would look at me and expect me to make the sign for her so she could learn it.

By the time we went to her sixteen month check up the doctor asked me how many words she knew. I will never forget the shock he had when I said that she had upwords of 150 vocabulary words under her belt.

There wasn’t a single idea that she thought that we couldn’t understand.  She was stringing together multiple signs in order to make complete sentences.

That was one of the first times I realized my girl was different.

My kids weren’t like other kids (and it was frightening)

She didn’t match the other kids.

Everyone is smart. Everyone had great and shining moments of brilliance. Emily just had them, when it came to words, writing, and logic, faster and more often every. single. day.

But there is a flip side to having kids who are gifted.

She was also impaired by extreme emotions.

Emily had another board book with baby faces in it.  You know the kind that teaches about emotions.  One baby was “happy,” another was “sleepy,” and still another was “mad.”  Emily loved that book.

But without fail, every time we turned to the page of the “sad” baby, Emily broke into uncontrollable sobs.  She couldn’t stop. Not just for a minute. For more than half an hour! It was as if the feelings from that baby infiltrated straight to my little girl’s soul.

Since then we have noticed that whenever she is in a room with strong emotion, no matter what it is, she is affected.  She cannot tell where her emotions stop and someone else’s begins.  She becomes whatever emotion is strongest.

She struggles with socks too!

Another adverse affect of Emily’s abilities is her aversion to certain “feels.”  Tags have always been an issue.  Socks cannot be worn due to the seam in the foot. This isn’t a simple dislike of clothing, this is a fight tooth and nail that can last more than an hour. For socks!

We’ve been on a journey

Throughout our time of having Emily we have been told how lucky we are to have a child with high abilities.  I totally agree.  We are blessed to have Emily. She is truly a gift, as all children are.

She is a blessing with a lot of issues.  Since her babyhood we have dealt with sensory issues, peer relationship issues, and issues with uncontrolled anxiety, fear and nightmares.

I do not know what it is like to have an easy child.  I do not know what it is like to have a child with disabilities.  I do know what it is like to have gifted children.

It isn’t the charmed existence that it may appear to be on the outside.

That’s why I’m writing this blog, along with my husband.  We are ten years into this journey.  We are far from done, but we are, perhaps, half way there.

There are others who have kids who are amazing and also completely frustrating in the same moment.

Parents who want to share that their three year old is writing complete sentences or reading chapter books, but feeling like it may come across as bragging.

The reality is that, without many people talking about it, parenting these kinds of kids is scary. It’s stressful. And there’s one feeling that you have more than any other:

You’re alone in this.

And that is a lie from the pit of hell.

Parents who are up until all hours of the night with a child who just never sleeps or parents who struggle with kids who won’t wear certain clothes. Or parents who deal with verbally gifted kids who debate for hours. Or the parents of empathetic kids crying all the time.

This blog is for you.

I want you to know, you are not alone.

My husband and I are on the journey with you. And we want to help in every way we can.

Let’s have coffee.

I love having coffee. But even more than that, I love the conversations I have while drinking my coffee. Like today’s. It was so great to be able to tell someone else, “that’s actually normal.” It’s not normal in the big sense of the word, but it’s normal for us.

Are you in that spot? Let me know. Maybe we can have coffee.