Life Under the Microscope

When you start out on this path of discovery, be prepared to have your life put under the preverbal microscope. Everyone and I mean everyone will be looking down the eyepiece lens adjusting that “fine tuner knob” to judge every single aspect of your life. How do you live, where do you live, what is your diet like, what do you watch and when? How much physical activity is in place? You’ll be asked about socialization patterns for the adults and children. It will be all of your life, every moment of every day, being accounted for the: “ON AVERAGE…?”.

For me, it has been a dishearting, frustrating, and exhausting three years of paperwork. A few times in total annoyance I would just huff and mutter loudly “I DON’T KNOW!” To which some well-meaning front office staff member would respond “It’s O.K., any questions you have just ask the doctor.”

I had to know my health history all the way back to the great-grandparents, my husband’s medical history, my Ninja’s medical history…even the bits before he was born. I had to remember how many weeks along I was when he was born, his birth weight, length, and what time he was born.

How did they expect me to even remember that?

I have three! THREE! boys. I’m lucky if I get their name and birthday correct. I felt like I was in front of a firing squad and one wrong answer would send me to my grave!!  To top it all off, I had to contend with what one specialist thought was important vs. what another did not. The paperwork Q&A was never-ending. Don’t even get me started on the nurse/doctor conversations. It was like being a broken record. I still don’t know why the doctor will walk in and ask the same questions I just had spent a half hour answering on my medical forms. Did they think I lied?

At one point in our process, I seriously started to have second thoughts and doubt! It was the dreaded reality that maybe I was overreacting? Maybe he was just being a boy. Maybe my Ninja doesn’t fit into that perfect little box the school likes to call “normal.” Let’s be honest, our public school system is set up for well-behaved, rule following, overachieving girls. I am not saying that boys can’t be all those things. I’m well acquainted with several bright, well-behaved, little guys. But overall, if you look at it objectively, for whom is the classroom structure modeling more? In my humble opinion, girls.

I remember I was sitting in the Neurologists waiting room filling out what felt like my hundredth medical form and I absolutely dreaded the possibility that I could be chasing my own shadow. At that point in our journey, no one had been able to pinpoint the underlining cause of the symptoms the Physiologist had noted. Each specialist said that “things were a bit off,” but they couldn’t say what or why.

It was the longest year for me. Every new specialist appointment was months out for new patients, and each doctor would end our twenty-minute exam with, “we recommend that you follow up with…”

So, we would follow up with one specialist after another, chasing the “perfect” explanation of what is the cause and how to treat it. We rounded out with a total of seven different physicians and specialists. Our Ninja was examined by his Primary Care Physician, a Physiologist, an Opthomologist, a Neurologist, and a Pediatric Behavioral Specialist. He also was evaluated by an Occupational Therapist (OT), and Physical Therapist (PT).

It was a lot of paperwork, followed by a lot of questions. No words can describe the feelings I had when family, friends, and the school staff wanted answers that I didn’t have, which only added to my self-doubt. Nobody could give me definitive answers. Once we had the OT and PT evaluations, we had direction and a “this is what we can work on” but no firm diagnosis.

My point—because I do have one—is that after three and a half years, we still don’t know how what or why. My Ninja has been described as an enigma. So, for now, we have two “working” diagnoses. One so he can receive the OT and PT he needs. The other so he can qualify for an IEP at school—which required evaluations by two separate Speech Therapist, and another Phycologist.

Our journey started out bleak, the light at the end of the tunnel was not even visible. Now it is a tiny pinprick, but halleluiah! It’s a light! Don’t doubt. Don’t give up. Do whatever you need to do for your Ninja! Even if that involves closet crying and screaming into a pillow—I’ve done both—but don’t you ever let the doubt win! Why? Becuase like my Ninja, your’s is just a brilliant, empathetic, brave, hardworking, loving child, who just wants belong and needs your help to overcome their individual challenges. It’s worth all the paperwork, and it’s priceless when you see that glimmer of light in their eyes!

photo credit: Bruce Guenter

Can you see that: A Closer Look at Vision Processing (part 2)

Vision has a very complex sensory job to do. It helps our brain to remember, identify, and judge where our physical body is within our surroundings. If our visual processing is flawed or taken away entirely life will become challenging very quickly.

If you missed the first half, I recommend you read part one and then come back. Because Vision Processing Disorder (VPD) is an involved topic I broke it down into two parts and today am finishing the review of the remaining four issues:

What are visual processing issues?

  • Long or Short-Term Visual Memory Issues: Children with either long-term or short-term memory issues can struggle to remember what they’ve seen. Reading and spelling will be challenging as well as using keyboards, calculators or even recalling what they have read.

What would you say is the one word that would cause you nightmares? Mine is, SPELLING! Why? Because studying spelling words each week is a living nightmare. The one thing that has helped most is a free app called “Spelling Bee.” He is far from perfect, but 8/20 is an incredible achievement! Also, one of the games he plays on the app has sliding letters across the screen from the left and right. After working with this app for a little over a year, my Ninja can successfully track and pick out the letters he needs to spell a word. HUGE deal!

  • Visual-Spatial Issues: Children with visual-spatial difficulty will struggle with judging where objects are in space, i.e., how far things are from them or each other, and where characters or objects are located in a descriptive narrative. Some children may also find telling time or reading maps difficult.

After our full evaluation came back, it was SHOCKING to see in black and white my child described as “floating in space.” Visual-Spatial Processing is a huge roadblock for our Ninja. It was also relieving to finally understand why he had to touch everything around him all the time, or why when we would be out for a walk, he would stop in the middle of the road and not at the corner as instructed.

Honest moment here: I truly thought he was just a boundary-pushing punk. Yes. I called my child a punk because that’s the best way I can describe his behavior before I understood. Obstinant and defiant. It turns out that he couldn’t judge where he was in his space. I felt about 1″ tall for a month, but now I have perspective, understanding, and knowledge, which has empowered me to advocate for my “seeking” child!

  • Visual Closure Issues: is when a child is unable to identify an object that is missing part or parts of it. i.e., a bike without wheels, or a drawing with missing details such as a bird without its beak.

When given an evaluation for Occupational Therapy (OT) my Ninja was asked to complete the look of a shape. He sat very studiously (well for him that is) which means he was bouncing here there and everywhere while attempting to complete the other side of a triangle with a square in its center. It was a mess. I am happy to report with a lot of hard work on his part and a fantastic occupational therapist that he can now complete the other half. Not neatly, but with better accuracy than on his first trial.

  • Letter and Symbol Reversal Issues: Children that switch and substitute letters or numbers when writing is age-appropriate until age 7. If they continue to struggle with correct letter formation, it will begin to affect reading, writing and math skills.

Children with VPD may not know that they see the world around them differently. In fact, many VPD issues get misdiagnosed as Dyslexia and ADHD. Because a child will exhibits classic ADHD or Dyslexia symptoms such as the struggle to maintain attention, reading, tracking and sustained focus.

To avoid being misdiagnosed, I would encourage you to research and understand VPD. I would also urge you to find a Developmental Othomologist to evaluate your child. (Check out www.covd.org to find one in your area) Be sure to express any concerns you have when making an appointment.

Should your child have Sensory Processing Disorders (SPD) it may present some challenges during your exam. However, with time, a patient and kind Othomolgist, they will be able to obtain the visual information they will need to make a proper diagnosis.

Never forget to advocate for your child’s healthcare needs. I took our Ninja to a well respected and noted Othomolgist in his community. After our first follow-up appointment to discuss results from testing (that he did not even perform), I didn’t agree with his assessment and course of suggested treatment. So, I took my Ninja to get a second opinion. I’m very thankful I listened to that “mom voice”! I found another well-respected Othomolgist, waited on her new patient list for a month, and had an entirely different experience. She was hands-on and worked with us at each appointment. We were able to put in place a treatment that has helped my Ninja.

Don’t be afraid of that shine plaquet on their walls. Speak up (respectfully), and ask questions. Doctors are human too and capable of error. Being a voice for your child never wrong!

photo credit: Dmitry Ratushny

Sensory Saturday: Visual Seekers

This Sensory Saturday is all about our  “Visual Seekers.”

Children who are Visual Seekers find opportunities to watch objects and lights spin, flash, move, jump, and flicker. My Ninja absolutely loves to watch all the lights at Christmas. It has become a family tradition to drive around neighborhoods at least once a week to view all the decorations.

Here are some great kid-friendly product ideas that you can purchase for your Visual Seeker:

Liquid Motion Bubbler | Sensory Ninja

Zig Zag Motion Bubbler | Sensory Ninja

  • Lava Lamp (personally recommend these for older children as they can become very hot)

Lava lamp | Sensory Ninja

Orbeez Mood Light | Sensory Ninja

  • Spirograph (I absolutely loved this as a kid! It’s a classic, and perfect for any artistic visual seekers)

Spirograph | Sensory Ninja

  • Glitter Bottle (also called a “time-out” bottle) This is fantastic for any DIY crafters. Project Pinterest has a great tutorial. You can also find different ideas for materials on Pinterest.

Glitter Bottle | Sensory Ninja

Visual stimulation is good for all children. The flashing lights on infant toys might be super obnoxious to a parent, but they are helping to develop their Vision Sensory Processing. In addition, a slower rhythmic flashing or moving is calming. It can regulate the visual input and help a child’s respiration and heart rate. The fish tank in your dentist’s office is strategically placed there to help calm any anxiety you might have. Sneaky, sneaky Dr. Dentist.

photo credit: Sean Brown

Did you see that: A Closer Look at Vision Processing (part 1)

Vision is a sensory that goes far beyond the concepts of how well one can see. The information from the world around us is utilized and processed by our brain, not eyes. We all knew that, right? Of course! It was a well-taught fact when we learned about the five senses in grammar school.

Logic would lead us to the next question: how does our brain use the information it is receiving every second, of every waking moment, of every single day? Well, we use vision in everyday life for things such as visual motor skills and visual planning, visual memory, fine motor skills and hand-eye coordination.

WOW! Our eyes and brain do this all on their own, without us having to do a thing (other than look at the world around us). Sounds like another thing we “just do”, like breathing. We don’t think about how we see; our body just does it.

What are visual processing issues?

Understood.org breaks it down beautifully for us. I’ve summarized it here…with tidbits from my Ninja’s experiences with Sensory Processing Disorder (SPD) and visual processing issues.

There are a total of eight possible visual processing issues. No one is limited to just one, in fact, my Ninja has a few. Because this is a huge chunk of valuable information I’ve decided to cover the first four now and the remainder in a follow-up post. They are as follows:

  • Visual Discrimination Issues: This means that a child will mix up letters or shapes, and the orientation of objects, i.e., “d” for “b”, left from right, and top from bottom. So a child might write a letter “d” in place of the letter “p”.

While Visual Discrimination appears to be dyslexia it is in fact not. Dyslexia is a language-based learning disability, that cannot be reversed. While Visual Discrimination can be greatly improved with vision therapy based exercises to help strengthen eye control and movement as well as visual processing.

  • Visual Figure-Ground Discrimination Issues: Kids with this specific issue will have difficulty finding shapes or items on a page of information or maybe a specific toy from a large pile, as well as being able to pull a shape or character from its background.  The “Where’s Waldo” books might cause more frustration than joy, and Waldo will probably remain lost.

Thankfully, this is not a big stumbling block for my Ninja. He will at times struggle, but that happens more often when he is tired. It’s also one of his sensory triggers that we have learned to avoid or work through.

  • Visual Sequencing Issues: Children with this type of issue will have a difficult time seeing the order of symbols, words or images. They may skip lines when reading or writing and struggle to copy information from one source to another. They may also reverse or misread letters, numbers, and words.
  • Visual-Motor Processing Issues: Children with this issue will struggle with writing, and their ability to coordinate the movement of other parts of their body. They may be clumsy and have difficulty copying text.

Before my Ninja received physical and occupational therapy he was very clumsy. As an infant, he crawled or walked right into walls and furniture. Sometimes, he would bump his head or hand on the object again before moving to the side to avoid his stationary roadblock. Can you even begin to imagine what a crowded room would do to him visually? It caused frequent toddler meltdowns.

Conclusion

Even though I’ve only covered four visual processing topics, we already get a clearer picture of how essential it is for our eyes and brain to work in tandem. The struggle for children with SPD and or any Visual Processing Disorder (VPD) is a compounded daily struggle.

I would like to encourage you,  the next time you notice a parent struggling with a child, not to jump to conclusions. Please, keep in mind they might be facing challenges such as SPD or VPD.  No matter how good a parent might be, children can express themselves in ways which present as “acting out”. It could be a coping mechanism; with parent and child doing the best they can.

I don’t have perfect children—all kids have bad moments. Either way, having perspective, and knowledge is a powerful set of glasses to help us all be a little more patient and kind to those around us.

photo credit: frank mckenna

Finding Joy in our Sensory Journey

The other morning I had brunch with a new friend whose child, like mine, has some Sensory Processing Disorders. We were chatting about the school our kids attended and I shared with her some of the struggles we had with my son’s second-grade teacher and the school’s principal. It was the time in our process of attempting to “diagnose” a cause for the behavioral struggles, and find ways to support him. He would get up and leave the classroom without permission, avoid bring home his work folder, and obstinately refuse to do certain class assignments. He would essentially just shut down.

These behaviors resulted in trips to see the principal and losing recess privileges. There were many pre-conclusions about what was wrong with my son. Most of those circled around behavior correction, compliance, and comparing him to a “normal student” with an expectation that he should be able to behave more like his peers.

It wasn’t pleasant and left a very bitter taste. I remember feeling that he was misunderstood, and I felt sad and alone in the fight for my child’s success. Unkind words were said by both teacher and administrator. I experienced a huge low.

As I relived some of those moments with my friend, I was shocked to realize how much my son and I have grown and overcome together the past couple years. While the sting of days past is still felt, I also have peace for them as well.

The struggle to understand, sleepless nights, frustrated tears, exhausting worry, anger and my resentment at unkindness, have shaped a hope I wouldn’t have imagined possible. Oh, believe me, I can for sure muster up some of those old friendly feelings, but I also feel so much accomplishment and freedom from it. Maybe I’ve learned to let go a bit, to shrug off the annoyed looks or words; we get them often from people who just don’t know or care to be patient. But for me, I have chosen to seek joy in our successes.

We have difficult days ahead, but more and more often they are 100% filled with fantastic bliss. That feeling is priceless, I hope you can build on that, and cherish it. When those bad days come-because they will most certainly come-take a moment to remember the victories you and your child have won. That’s what will make all the difference in how you face new challenges. 

photo credit: © Terri Moore 2017

What is Sensory Processing?

The human body is amazing! From the moment we are born it automatically kicks into a full functioning multifaceted working machine. It’s astounding how everything comes together and just works! Well for some of us anyway. 

Sensory Processing:

Sensory processing refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.

Now that we have a textbook definition of what sensory processing is let’s play a game. Question: How many senses make up our sensory processing?

Did you think 5?

I’m sorry but the answer is 7! 7! and if just one isn’t working correctly…well if you’re exploring what Sensory Processing Disorder (SPD) means, then you’ll start to have an idea of the impact.

Internal and external environment is processed through the following

  1. Vision (ocular)*
  2. Hearing (auditory)*
  3. Taste (gustatory)
  4. Smell (olfactory)
  5. Touch (tactile)*
  6. Movement (Vestibular)*
  7. Joint and Muscle Awareness (Proprioceptive)*

The stars next to each of the senses are areas in which my child struggles; some areas more than others, but they all interrelate.

SPD can affect people in only one area or-like my child-in multiple. While no child will experience SPD the same as another, they are put into two groups, and in some cases, they can overlap. There are the Sensory Seekers and Sensory Avoiders. For example, my child does not like loud, noisy environments-avoider, where on the other hand he seeks deep pressure-like hugs or tightly fitted clothing-seeker.

What causes SPD?

The STAR Institue for Sensory Processing Disorder and their collaborators have been studying this very question. And so far their research suggests that it is inherited. So all you parents out there asking “was it something I did?” the answer is no. It is a DNA thing. Other factors are complications with a pregnancy or birth, as well as some environmental factors. (for more information check out spdstar.org it’s fantastic!)

Bottom line

It is unfortunate that children-like my own, suffering from SPD, are often times misdiagnosed – and therefore often inappropriately medicated- for ADHD. SPD can look like Autism Spectrum Disorders or even ADHD. I was told by two teachers that my child could have ASD or ADHD (good thing they aren’t doctors.) Remember, YOU- the parent! not Grandma, or Auntie or even the teacher knows your child better. If you feel like your child could have any kind of sensory delay speak with your child’s doctor. Be prepared to hear that it is “normal.” My pediatrician is an expert when it comes to diagnosing ear infections, not so much when it came to SPD-he totally missed it. We actually avoided our doctor altogether and took our child to get full evaluations from a psychologist. Whatever you decide to do, know that you are the only one that can/will advocate for you child.

photo credit: Johannes Plenio