YES!! Sensory Processing Disorder... there is hope

And there is something more to tell....

Our meeting today was reassuring and comfortable.  After reviewing the mountain of paperwork we completed we were invited into a gym/play area.  The owner of the facility (an occupational therapist) met with us.  As we sat and answered a bunch of questions, she allowed Espen to explore on his own.  He did what he would normally - go every where at the speed of light.  Touching and moving things.  Interacting and talking to people all over in other sessions.  Then she took him in a little room and they colored and cut and she tested his fine motor ability.  Then she talked with us. 

Espen has a sensory perception(or integration) disorder.  Think of it as a giant issue if you will.  All of the senses (touch, movement, sight, sound, taste, body awareness, pull of gravity) are not interpreted or processed by the brain.  The result then in Espen's case is being over responsive to input (high pain threshold, unusually high activity level, extreme difficulty with fine motor tasks such as coloring and eating, self-regulation issues like not able to calm down very easily and social problems).  So while there is always speculation that he is "normal" and that I am overacting or that I need to spank more or punish more -it is not the case.  For him spanking is a joke because it doesn't hurt.  And his extreme activity level is a response to stimuli. 

If normal is a bell shape, Espen scored 2 steps outside of the bell on being overly responsive to stimulation.  His senses are getting worked overtime and he has not yet determined a way to cope with it all.  We have recently seen lots of acting out, angry outbursts, crying tantrums.  He has complained that school is to loud and he wants to escape.  I can not take him to the grocery store or mall or any store because the lights, sounds and smells drive him crazy.  He has a very difficult time playing with any other children because he has a real hard time recognizing his strength or where his body is flying and he hurts them.  It is a sad thing to know when he is in the playground with others, if they cry it is because of Espen.  It is hard to explain to a happy friendly little boy why some parents have not wanted him to play with their children.  His fine motor ability is fairly low.  He can cut and color but not with any great ability or agility.  And the tasks are so taxing on him that he gets very mad and acts out very quickly. 

She explained it in a good way for us.... if you are driving in a snowstorm with the radio on and the kids start talking or screaming what do you do first?  Turn down the radio?  We naturally start to limit the stressors.  Espen is getting all the stressors and stimuli all the time and can't process it or turn any of it off.  Walking and feeling the air and seeing the sights is not enough for him.  He walks, then runs faster & faster so he can feel all the wind and then throws himself to the ground so that he smashes into it because THAT feels AWESOME to him.  More is better when you don't get the connections in your brain.   So wow... that is good to know... where do we go?

We have scheduled therapy sessions.  Three a week for now.  It will drop down to 2 a week at the first of the year and then space out as he starts to understand and as we start to be able to help him.  It is occupational therapy.  He thinks it is a giant play place.  The therapist will have activities that challenge his ability to respond in an organized way.  And teach him the awareness of appropriate responses.  It is a neat system.  We have "homework"  and a sensory practice at home too.  We have to get a routine developed that includes time every couple hours for activities that help readjust his brain so that he can function in "normal" parameters.  It might take a few weeks for us to figure it out and start to really learn what helps & what doesn't.

For him it will be play.  Hopefully for us it will mean a child who can sit for a couple minutes quietly.  Who we can play puzzle, games and color with.  Who won't do risky things like climb on the deck railing or the top of the slide at the playground.  Maybe we can teach him about stranger danger and not running in the street.  Maybe he can play with little people and not hurt them.  Maybe I can go to the bathroom without worrying about what he can get into or out of while I do it. 

Even if you think it is a bunch of bull, we need to try.  I can't go on the way we are.  I feel like I scream at him all the time and that we are on a road to destruction and failure at school.  I feel like if we don't do something, even as vigilant as I am, he is going to be hurt, burned or poisoned.  It is only a matter of time. And I want it to be better. 

Thankfully our insurance covers 50 visits a year.  That is why we are getting so many in before the end of the year.  We start the 50 again in January.  We have a co-pay of $25 a session.  So while $75 a week is maybe not much, it will be a stretch sometimes.

The good news is that we have been doing some things really great!  In his case, gross motor development and exertion are a very calming thing.  And the water.  The stimuli of the world is not heard under water.  If you have ever seen him in the pool or bath you recognize he can be under for an extraordinary time!  It is quiet there!  So we will continue with swim lessons.  And I think skating lessons we will continue as long as I can earn that bit of scratch at Deitze.  Because we recognize the importance already of those activities. 

So I tried to think of all your questions.  I am sure I forgot some.  Ask away.  It was finally nice to not be judged as a bad parent.  It was finally great that someone heard our concerns and made us feel heard.  It was nice that they accepted Espen and his behavior as his normal and want to not take that away but help him fit into the greater world.  These people didn't want to medicate my baby but want to help make him feel connected to himself! 

That is where we are at now... and we start on Monday... three sessions next week.  We are going to work with the teacher at preschool and see what happens from now until December 20.  Then we will make the decision about preschool  It will be a busy week of learning and trying.  And our regular schedule.  And I am already exhausted! 

If you want to read more... sensory processing.

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After an hour long meeting in the doctors office,  an exam room with a box with a few toys, and a behavioral health professional, we were asked to complete a pile of paperwork.  It was an ADD/ADHD screening tool.  I was also asked if I would mind the teacher at the school completing one.  Wanting to follow the system as it is in place, I took the tool and I had a meeting with the teacher. 

The meeting with the teacher was as I expected.  She is very kind.  Doesn't think it is possible to diagnose someone so young with such an issue.  But she advised me of her growing concerns for Espen.  He can not do fine motor tasks at school.  He doesn't color well or write at all.  He can not cut things.  He has a very small attention span. He doesn't look people in the eye.  He wiggles and kicks and moves and touches everyone.  She reported him as a clumsy, unbalanced, under-coordinated little boy.  This behavior is pretty distracting (as I can imagine!).  He has started hitting the others and has spent some time out.  She is trained not to judge children against each other but she reports he is behind the other children.  Yes she would complete the screening tool but in her opinion that is not the problem, there is something different. 

As you can imagine this meeting was hard for a mom to hear.  But I did.  As a mom we want to only hear the great and wonderful things about our children.  And some of what she told me did not jive with how I know my little boy.  Most especially the balance & coordination... none of us have seen that!  But I took that information and hoped the tools & the behavioral health professional would help us find some help. 

After a few days of trying to contact this professional I finally reached her (she left a message for me to call her back but no number.  I had to contact the office repeatedly in-between clients.).  Her "findings" suggest that Espen is border line ADD/ADHD and perhaps has PICA.  But she warned me it is hard to so quickly diagnose a 3 year old.  She could refer us to a psychiatrist who could medicate him.  Beyond that there was not much she could do.  I politely declined that route.  She said perhaps an occupational therapist would teach him some coping behaviors.  However she did not know any to refer me to.  She also reminded me to take care of myself so that I don't burn out.  Man that was a rich one!!

So I spent some time researching pediatric occupational therapists.  I found one near and I visited it.  I cried explaining to the receptionist my trials.  They can do a full assessment but I need a referral from the doctor.  I was on the phone before I walked out.  Within 10 minutes I had that referral and an appointment is now scheduled for November 29.  We had a giant pile of papers and notes t.  o make.  I am hopeful we will have some answers to our questions.  And if not.... we will have some other places to try.  I have also made an appointment with my medical doctor.  His office can do a full chemical panel on Espen.  On the chance that there is something internal out of chemical balance....  I will cover all the bases for my child.  I will fight the fight. 

And this week we will decide if we should withdraw him from preschool.  Maybe getting some kinks ironed out will make his school experience better.  Maybe trying it all at the same time will reinforce the lessons.  There is no manual.  It is all trial and error.  And it is exhausting.  But there is no giving up..... he is much to important. 


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The last few months have been a real struggle.  Espen started pre-school 2 mornings a week (because he REALLY wanted to go).  He also started swim lessons 2 times a week instead of just once (because he is good, never complains & it calms him).  We are interacting more with children roughly his age.  It has become apparent that there is something special about my beautiful little boy.

I have blogged my struggles in the past to be a good mom.  I've shared our good days and our bad days.  But this I have, until now, kept to myself.  I have expressed exhaustion, frustration, stress and anger about some of Espen's quirky behaviors.  Repeatedly, by professionals, friends and family I have been told not to worry.... HE IS A NORMAL LITTLE BOY.  I tried to go with that with a nagging voice in the back of my mind all the time.  It started as a whisper and now it is a scream.... my little guy is far from "normal".  But do not misunderstand... for him (and for us) the world we are in is NORMAL.... but it is not mainstream.  Our normal day is certainly not your normal day.  It is not easy.  And I have finally had the courage to ask for some help. 

I took Espen to a behavioral health professional last week.  The decision to even get there was hard.  There were even discussions in our own home as to the validity of my decision and the ramifications.  After everyone keeps telling you he is fine, normal, cute, funny... that his quirks and behaviors are perfectly OK... it is hard to accept the notion that your family needs help.  And then comes the horrible worry that he is 3 1/2 and you are talking about some decision that could follow him for the rest of his life and what if it is the wrong one.  So after lots of prayer and thought and research I called his pediatrician and asked for some help. 

From the moment Espen is awake (typically 6:50/7:00am) until the time he goes to bed (we shoot always for 7:45pm, but often he can keep himself awake in his room quietly until after 9:30pm) he is at the highest level of energy.  It has become a frantic pace of keep up.  Last week I was pulled aside by his teacher and spoken with about his constant movement, inability to sit for periods and annoying touching of the other kids.  I witnessed him push a smaller child into the pool and laugh.  Our home is a fortress.  Once inside there are locks on all the doors at the top, all the windows and on some internal doors.  Just to keep my child safely inside or out of harms way.  Our frantic pace has hindered fine motor development because he just can not sit still.  His pace often makes meals the most challenging time of the day.  Most concerning has been the near accidents when he has become suddenly to fast for me and has gotten into the street, parking lots, lost in stores. 

It is not just the frantic pace alone that concerns me.  My child eats everything.  I have called poison control several times.  My child does not feel pain like other children.  He asked to take a bath last week and he can turn on tub.  He had tub going & was naked in it.  When I checked the temperature it was so hot I was burned.  My son was IN THIS WATER his little body was pink and he was not bothered at all.  He puts his hand on the hot stove frequently.  He has put face right at the open oven.  He has a notion to jump off the deck onto the trampoline to see how high he will bounce.  He climbs on top of his swing set and jumps.  And where am I you may be wondering....

I am never far.  I am not on my phone.  I am not watching TV.  I am most typically right there when these things happen.  It is how I can so quickly respond.  It is how he has not gotten injured.  I am keeping up with him.  And I am disciplining him.  I use time out excessively.  I have spanked (does no good because his pain tolerance is giant).  I have taken things away.  I have yelled.  I have held.  I literally have tried everything to slow him down, get his attention and keep him safe.  I have removed all processed foods and artificial colors from his diet.  Sugar has nearly been removed from his diet as well.  It has made some difference but not enough. 

There are some that will say that his pace is determined by my pace & personality.  Yes while it is true that I am a fast paced, highly creative GO GO type person.  I have learned to slow it down.  This speed my son has is not just from mommy.  He certainly gets his thirst for adventure and his desire to see things from me but he has an internal mechanism that speeds him up.  This is not a case of bad parenting.  (Although the counselor certainly made me feel like I was up for most horrible mom of the year).  We are consistent.  We have rules.  We stick with them.  My son gets ONE chance to mess up and then there are swift and immediate consequences.  I have left stores, restaurants, playgrounds to the surprise and sometimes relief of other families.  It is never easy.  I cry a lot.  And I love my son. 

The voice just got louder and louder.  I had to ask for help.  So we met with a counselor for an hour.  I had homework to complete a long ADD/ADHD screening form.  I was asked to have his teacher do a small form.  There is not a chance in hell that I will let an hour appointment and some handful of paper determine that my child has ADD/ADHD.  He is 3.  I had my own paper for the doctor to look at.  I have read a lot of literature about ADD/ADHD and I don't think that is our issue.  I stumbled on something called Sensory Processing Disorder.... I have read, watched videos and researched.  I cried with delight that there was hope... and that there may be answers and ways to help my son slow down and be safe. 

Sensory Processing Disorder (SPD, previously referred to as "sensory integration dysfunction") is a condition in which a person has difficulty processing and acting upon the information they receive through their senses. This creates difficulty with many everyday tasks. 

 

Symptoms may include:

• Having trouble falling asleep or staying asleep and wandering the house at night
• Throwing tantrums or zoning out in noisy public places
• Have trouble sitting still, focusing, or transitioning from one task to another
• Exhibiting fearful or aggressive behaviors in certain situations
• Craves tight hugs, banging into things, having people sit on him or pile things on top of him
• Covering their ears or being bothered by sounds that don’t bother others
• Constantly putting objects in the mouth past the toddler years
• May lick, taste, or chew on inedible objects
• Avoids certain textures, may hate wearing clothes

This week I will call my doctor.  I will insist on a blood panel to determine if he is balanced chemically.  I will talk again to the behavioral health professional.  And I have the numbers of some occupational therapists to see if I can get a screening for my son. 

I will keep on.  There is no way we can continue to go like this.  I am a frustrated stressed out mess.  My son is super smart and cute and funny and amazing and vocal and brilliant and strong.  But he is exhibiting more dangerous behaviors.  I can not be on top of him all day and we have to learn together how to be safe and live inside some rules.   We can not live inside the bubble of safety that is our home.  We have to venture out into the world and understand how those loud big noisy places make him feel, how to teach him to sit in school without touching everyone, how to keep weird and random things out of his mouth. 

Don't feel sorry for us.  This is our normal.  While I may get to feel jealous that your children walk nicely by your side without running for an exit or can make it through the store without a frantic amount of anxiety or can eat a bowl of colorful cereal for breakfast and not jump off the couch onto the coffee table or not be tempted to put a worm on their tongues just to feel the sensation of it wiggling... you do not get to feel sorry for me.  I may be exhausted and frustrated and look like a ragged mess but I am blessed to have this amazing little boy. As hard as the decision was to reach out for help, I know it was the right one.  I can't wait until we reach public school and he is outcast, picked on, singled out, diagnosed to help him learn the boundaries of his body and to quiet his mind so that he may focus and be part of your normal!  But I do need your support in my quest for help and knowledge and understanding.  And when I express my exhaustion through clenched jaw and with tears in my voice, please just have some compassion for what you can only imagine is happening in our lives!