Sensory Processing Disorder

I want to bring this topic to the attention of other parents, that may see these symptoms in their child, and not know what is going on. Another thread about someone who obviously has OCD, but was basically chastised by people, got me thinking about this.

First a little history. I have 3 children, 16, 12, and 9, all boys. The first and last were hard births, the middle son was normal. One would assume that all things were to go well with him, but that is not the case.

All 3 have ADHD to some extent, but the middle son has been a challenge to say the least. I was never a believer in ADHD until I had kids. I thought it was due to bad parenting, drug or alcohol use during pregnancy, etc. I was wrong.

We have struggled with the middle son for years, with no improvement no matter what we tried. Diets, therapists, doctors, etc.

He is an extremely smart child. He has good grades in everything, except his English class right now. Some of the things he says, show not only smarts, but verge on brilliance. He looks at things a bit different, but in a good way. At the same time, I have been like "how can you be so smart, yet do all these strange things, and act this way? " No form of punishment ever seemed to work. He does not care about being in time out. Tell him that you will take away toys, and give them or throw them away, he will willingly help. Take TV and games away, no problem (except he tries to sneak them).

Over the years we have had an Occupational Therapist, and a Family Therapist, both say they give up on him. They just could not help. Frustrating for sure.

We have known for a long time he has had issues with strength. Core strength is low, handwriting is awful because his hands cramps up. Trouble running because his feet and legs hurt, etc..

His Dr. just recently referred us to a Physical Therapist. We went to him, and after looking at him he told us that it was out of his field, but his wife was working with people who had something called Sensory Processing Disorder. We had never heard of it. He set us up with an appointment with her. In turn, she had us go see a group that specializes in it.

They spent 2 hours doing tests of all sorts with him. Not blood work and stuff, but tests like balance, moving in certain positions, holding positions, eye hand coordination, etc. They came to the conclusion he does indeed have Sensory Processing Disorder. One finding that was a shocker was they tried to get him dizzy. Put him on a swing, and spun him. Normal reaction is that the eyes will dart back and forth after spinning. His eyes remained still, no matter how many times they tried, even though he said he felt dizzy. They said this showed a lack of communication from his sight sense to his brain. What??

Having never heard of it before, my wife and I looked it up. The symptoms we read were like someone had watched him, and wrote things down specifically about what they had seen. The fit could not have been better.

What is Sensory Processing Disorder? Basically, it is where the brain is either not receiving, or not interpreting signals from the senses properly. These can included sight, sound, touch, balance, weakness or unawareness of where the extremities are and more. It can exhibit as overly sensitive, or under sensitive. In our sons case, he is under sensitive to a lot of stimuli.

Some of the things that fit perfectly with our son:

Difficulties following directions
Challenges distinguishing between similar sounds
Problems finding an image in a cluttered background
Uses too much or too little force
Poor balance
Poor sense of movement speed
Poor posture control or strength
Poor equilibrium and balance
Difficulty isolating head-eye movements
Poor tracking of visual stimuli
Avoidance of upper extremity weight bearing
Discomfort climbing or fear of heights
Tires easily
Challenges establishing dominant hand (right or left handedness)
Trouble performing activities of daily living
Accident-prone and clumsiness
Poor fine motor coordination
Have odd posture
Clumsiness
Delayed fine motor control, such as handwriting challenges
Delayed gross motor development
Impairments in sleep, eating, and elimination patterns
Poor coordination
May fall often
High tolerance to pain
Fearful of crowds
Avoidance of standing in large groups

We have seen all of these things over the years. It is just amazing how well this diagnosis fits with him.

The specialist says they can help him, and I am cautiously optimistic.

I hope that this may help someone out there that sees these things, and say "what is going on with my child?"

a reply to: MrRCflying

Poor kid, I hope you find a remedy, but at least you can put a name to the face now.

I can relate to a certain point,after many years of therapy i was recently diagnosed with Autistic Spectrum Disorder, or as I call it 'the artist formally known as Aspergers.' I can sympathize with your child, I share a few traits with him. The key is to be patient.

a reply to: MrRCflying
I´ll leave this here:

Another thread about someone who obviously has OCD, but was basically chastised by people, got me thinking about this.

I suffer from a relative mild form of OCD, too and I find it really presumtious and awkward that so many people are quick to call someone out haveing an OCD, because he had a slow day at the counter, based on a description of a stranger on the internet.

Wish you and your children the best.

a reply to: MrRCflying

I have sympathy for you as a parent and have a similar situation. I have a little better results by either circumstance or choice.

The therapy was useless. Child was a toe Walker and it was useless. That didnt go away but hiking up and down mountains definately helped even if you move at a foot per minute with little kids.

Also as far as disorders I am not sure we are addressing some real issues in society and education in particular.

For one the more we try and fit a square peg in a round hole the more we bury the real issue. The hole is square and there aren't any round ones.

People have had these problems and things like synthesia since probably we cells capable of mutation.

We as parents thought about what a person who's brain was wired like this could do, not really how to fix the brain to be different. Dance and interpreting the emotions of sound was a birth trait that went with the brain wiring.

For us it was the arts and sensory heavy learning. Waldorf, Montessori, magnet schools etc can help..

Of course like everything there are levels and degrees.

My advice as a parent dealing with this and having some success is find some ways you don't have to fight it but can help hone a brain predisposed to be better at certain things due to the wiring, jobs if they aren't overwhelmed by their processing so I do understand if it's so acute nothing seems to be working. That wasn't our case. Definately some emotional control issues for a while but teaching how to slow those down was also part of it, with breathing.

It's been over 20 years ago that my daughter was diagnosed as having Auditory Processing Disorder. She always spoke a little different but was otherwise did well socially and fine in school.

However, as she entered middle school she began falling behind and not doing well and losing friends. She was very agitated and I thought it was the result my very difficult divorce from her father.

She saw therapists and did go for testing after being wrongly diagnosed as ADHD, as were her billiant brother and father.
I knew that wasn't right because she did not act like them.

One very thoughtful psychologist recommended having her auditory tested because he said he had a hunch about her responses. Sure enough. After exhaustive testing at the University of Minnesota Hospital, she was found severely APD. The testers were surprised at her coping skills but as middle school taught more audibly she was lost. I balled for hours.

The schools were worthless. I spent years trying to get them to understand her problem. Had therapists meet with them and strategize. The schools were very disappointing and never followed the plans as set up by professionals. I did finally sue a school system, went to arbitration and won but that also got her nowhere.

She went into a tailspin. Her father refused to accept the testing, became verbally very abusive, destroyed their relationship to this day.

Sadly, eventually at 11th grade she left all school systems and did get her GED but struggles in every aspect of her life even though she is quite intelligent and a good person.

Today, still no answers or cures. Sadly, there are many money making schemes professing cures but there are none.

This sounds like something weed might help. Just saying.

Have you tried it or looked into it at all?

a reply to: notsure1

My adult daughter is using CBD in Florida and it does help alot with her anxiety thereby helping her cope with the CAPD consequences. I would recommend using it if possible although it truly is a trial and error situation.

originally posted by: Thecakeisalie
a reply to: MrRCflying

Poor kid, I hope you find a remedy, but at least you can put a name to the face now.

I can relate to a certain point,after many years of therapy i was recently diagnosed with Autistic Spectrum Disorder, or as I call it 'the artist formally known as Aspergers.' I can sympathize with your child, I share a few traits with him. The key is to be patient.

Thank you. It has been hard to remain patient, but now with a clearer understanding, it should help.

originally posted by: luthier
a reply to: MrRCflying

I have sympathy for you as a parent and have a similar situation. I have a little better results by either circumstance or choice.

The therapy was useless. Child was a toe Walker and it was useless. That didnt go away but hiking up and down mountains definately helped even if you move at a foot per minute with little kids.

Also as far as disorders I am not sure we are addressing some real issues in society and education in particular.

For one the more we try and fit a square peg in a round hole the more we bury the real issue. The hole is square and there aren't any round ones.

People have had these problems and things like synthesia since probably we cells capable of mutation.

We as parents thought about what a person who's brain was wired like this could do, not really how to fix the brain to be different. Dance and interpreting the emotions of sound was a birth trait that went with the brain wiring.

For us it was the arts and sensory heavy learning. Waldorf, Montessori, magnet schools etc can help..

Of course like everything there are levels and degrees.

My advice as a parent dealing with this and having some success is find some ways you don't have to fight it but can help hone a brain predisposed to be better at certain things due to the wiring, jobs if they aren't overwhelmed by their processing so I do understand if it's so acute nothing seems to be working. That wasn't our case. Definately some emotional control issues for a while but teaching how to slow those down was also part of it, with breathing.

Thank you for sharing your story. Working with him is the key, and that is what the specialists are helping us and him with. I still see a long road ahead.

originally posted by: notsure1
This sounds like something weed might help. Just saying.

Have you tried it or looked into it at all?

Not legal in NYS yet I don't believe. Something to consider though.

originally posted by: Justso
a reply to: notsure1

My adult daughter is using CBD in Florida and it does help alot with her anxiety thereby helping her cope with the CAPD consequences. I would recommend using it if possible although it truly is a trial and error situation.

All options are on the table. I would try it if it is prescribed. I don't think NYS has legalized medicinal use yet, but I could be wrong. I have not checked into it too much.

a reply to: Justso

Our son has a pretty hefty degree of CAPD.

It manifested along with his dysgraphia in kindergarten, but we didn't know what it was. It was suggested to us as something we check out via phone consultation with a group in Colorado. They referred to an audiologist in Ft. Collins Colorado - The Able Kids Foundation.

I did my research and came to the conclusion that if what they did worked, Able Kids was the place to go. Our son was only hearing about 60% of information accurately. Able Kids has a device developed in conjunction with the university that he wears in one ear. It allows his ears to sync up so his brain has an easier time processing auditory information. With it, his hearing accuracy goes up to about 85 to 90%, less accurate in louder situations but still better than what it was.

The first time he wore it. We realized he was holding actual conversations with us, and I cried. He used to always just monologue to cover that he couldn't hear.

And as you say, his voice is a little "off."

I don't know if they could help your daughter at all, but it might be worth a shot. It's not a cure, just an assistive device, but it does make a big difference.

a reply to: ketsuko

That is fantastic news. I hope your information can help Justso and others.

It has been suggested that my oldest son may have a very mild case of APD, but probably not enough to go through all the evaluation stuff. He can watch movies, or listen to conversations, but seems to get lost easy. He has to ask multiple questions to begin to make sense of it. Overall he is doing well with it however, and has now started in a STEM academy. The smaller class size and teaching style seem to be helping.

a reply to: MrRCflying

I knew there were occasionally physical side effects like this, but mostly when I ran across sensory processing disorder, I would get stories of kids who had sensory overload visually or hearing or taste or touch and would throw tantrums. People would get them misdiagnosed with autism, but it's not that, just an extreme sensory overload response.

This is a different facet of it.

originally posted by: ketsuko
a reply to: MrRCflying

I knew there were occasionally physical side effects like this, but mostly when I ran across sensory processing disorder, I would get stories of kids who had sensory overload visually or hearing or taste or touch and would throw tantrums. People would get them misdiagnosed with autism, but it's not that, just an extreme sensory overload response.

This is a different facet of it.

Completely different. Instead of sensory overload, it is underload I guess you would say.

He has never been one to throw tantrums, basically the opposite. Very mild mannered, kind, loving, etc.

He is however the messiest person I know. He eats like a slob, never uses utensils or napkins, even though we eat as a family and I remind him every night. Does not care if his face is a mess, cloths or shoes are on backwards, hair messed up, whatever. It just does not bother him.

Now I learn that is all due to the SPD. All the things I have gotten after him for, for so long, posture, writing, lake of utensil use, cleaning his room, all comes back to SPD. I thought he was just going to be a lazy slob.

His core is weak, not just do to no strength, but because the communication between muscles, joints and the brain is not there. At least that is how it was explained.

He physically can't carry a book bag, we had to get an exception for one on wheels. If he tries, he just hurts. He comes in last during the mile run/walk they have to do each year at school. When testing him they had him do certain positions. He could only hold them for less than 15 seconds, when the standard for his age was close to a minute. I did not realize how bad his balance was. He could barely stand on one foot for 3-4 seconds.

Pain is almost non existent for him. Twice he has had to have stitches. Once when he fell and cut his hand on metal. The other time he was playing with the pet rabbit (he was about 7 or 8 at the time). He is almost like in the cartoons when the big snow man grabs Bugs Bunny and says "I will love him, and pet him and call his name George" all while Bugs eyes are about popping out. That is kind of how he is with animals. The rabbit did not like it and kicked, and a claw caught him in the webbing between 2 fingers. Instead of screaming and crying, he was more worried about the rabbit. He went to my wife with his hand behind his back asking her not to be mad at the rabbit, she did not mean it. Finally he brought his hand out, he had to have 3 stitches. Neither time did he cry at all.

Yet with all these issues, he does not let it bother him. He has the attitude of "it is just the way I am", and nothing anyone says really affects him.

What we have been told is that as his core strength increases, a lot of these other things may fall into place. Eye hand coordination will get better, fine motor skills improve, etc.

It is all just so strange to me, yet everything they are saying fits him.

a reply to: ketsuko

Fabulous to hear. She is now an adult but still suffering too. I will share your info and hope others who read this can have hope.