Sensory Processing

Notes from~

The Basics of Sensory Processing and Sensory Diets

Jennifer Krull, OTR

April 25, 2011

Today I'm grateful for a wonderful mother who attended this conference with me when my husband couldn't.  Her first reaction to Aiden's likely diagnosis?  She shared many names of successful people who are autistic!  I love her!  I'm so grateful for her support, and the support of all my friends and family.  Thank you for all your love and encouragement.  It means the world to me.  Somedays are better than others.  I'm trying to stay positive, and not let this overwelm me.  I'm arming myself with knowledge so I can help my son!!!!  One lady at the conference said, "I know my son [age 7] more than I know myself.  I understand him and how he thinks."  I hope I can get to that place someday with Aiden.

Here is a summary of what I learned from the OTR that works with autistic children~

There are 7 sensory systems we all use each day.  People with "Sensory Intergration Disorder" may show dysfunction in several sensory areas or a few.  Sensory dysfunction often co-occurs with autism, ADHD, and Asperger's syndrome.

The 7 Sensory Systems with possible dysfunctions:

*Hearing: may speak very loud and/or think others are speaking too loud.

*Vision: may get too much visual input, so making choices is difficult.

*Smell: some are overally sensitive to smells--no matter how light the scent.

*Taste: strong tastes may awaken the senses and get their attention.  *Picky eaters*

*Touch: alerts to danger by recepters in the skin and/or helps identify objects in the environment (i.e. hard, soft, sharp, or dull).  People may put themselves in dangerous situations, have a sensitivity to textures, etc. 

*Vestibular system (inner ear recepters): provides information about where we are in space, if we are moving or if our environment is moving.  Some need more input to "know where their body is".

 

*Proprioception (receptors in the muscles and joints):  Provides information on where our body parts are and if they are moving.  People may get too close, use too much force or not enough force.  They are looking for more input to tell them about their environment.  Pushing, pulling, lifting, and carrying are beneficial to strengthen this sense.  POINTS FOR EXERCISE!  :)

Other signs of Sensory Processing Disorder:

bold indicates Aiden's behavior

*over or under responsive to touch, movement, sights, or sounds

*Easily distracted

*Difficulty in social or emotional situations

*Activity level is unusually high or unusually low  --both

*Physical clumsiness or apparent carelessness --the OT sees this in Aiden, but I do not.

*Impulsive, lacking in self control

*Difficulty making transitions from one situation to another  --at times, but don't all 3 year olds?!

*Inability to unwind or calm self

*Poor self concept  --not sure yet

*GI issues

*Sleep disturbances --recently, a little, yes

*Delays in speech, language, or motor skills

*Delays in academic achievement

*Struggles to complete self-care tasks

Other Notes:

In typical children, sensory input is managed unconsciously and without extra effort on their part through typical childhood activities.

When sensory input is not working accurately, negative outcomes that affect motor planning, attention, social interactions, and learning can occur.  Children may need to control their environment in order to support their own internal level of "alertness"--how they function during different activities. 

Sensory diets, much like our daily diets, are methods of providing meaningful sensory input throughout the day to improve outcomes.  Here are some ideas presented (each child will vary in what works and what is appropriate):

*do heavy work with the child--pushing, pulling, dragging, etc.  A kettlebell would work nicely! :)

*use an exercise ball with the child on his/her tummy rolling back and forth

*pull child on a blanket across the floor

*sandwich the child in couch cushions and apply pressure

*use a tunnel sock

*push against the wall

*burrito roll the child in a blanket

*use Model Magic, Playdo, etc. (molding clay)

*slide

*swing

*sled

*roll down hills

When the child is melting down TAKE AWAY SENSORY INPUT!!!!

At age 7, start giving ownership to the child.  For instance, if the child feels the need to hit, ask him or her to decide on an appropriate way to do this without harm to himself, others or property.  Help them decide on a healthy "outlit". 

Aiden loves to slide, swing, be chased/run, play with Playdo, go through his tent tunnel, and sled.  He loved being pulled on a blanket, and I plan to roll down a hill whenever I find one!!!!

     

Challenges

Challenges

We all have different challenges to face each day.  I've learned over the years that having a positive attitude-- no matter what--makes all the difference in how you cope with what life has to give you.  I have faith that despite Aiden's challenges, he has the power to do great things someday.  We all do.  

Aiden's daily challenges:

Communication 

One day we were at the library and a little girl, about Aiden's age, tried to talk to Aiden and get him to play.  Aiden didn't respond or even look at her.  The little girl went to her mother and said, "mom, why won't he talk to me?"  I told the little girl and her mother that Aiden was still learning to talk.  Even though this was months ago, I'll never forget that moment.

We celebrated Easter today.  I don't know if Aiden understands the concept of a holiday.  We participated in an Easter egg hunt, but all Aiden did was run around.  I know I need to guide him, interact with him, and encourage him, but I find it very hard when he doesn't seem to understand or respond.  It makes me sad to see other kids get excited about simple things that aren't so simple for Aiden.

I've learned a lot from the speech therapists, but Aiden seems to want to speak on his own terms.  We've worked with Aiden for months on how to ask for things.  He continues to struggle with this.  He will only say "more please" when I say it first.  One day, without prompting, Aiden said, "more please mom" on his own.  I've never cried so hard.  Progress :)

Sensory Processing 

I never recognized some of Aiden's behavior as "different".  Sensory issues are new to me.  Aiden is our first child, so I didn't recognize things that weren't quite right until they were pointed out to me.  Aiden likes to put things in his mouth all the time.  He used to suck on his blanket so much that we had to take it away (it was disgusting).  When that was gone, it was something else.  Currently, he puts his hands in his mouth constantly.  He hits his head with his hand--not excessively, but enough to cause concern.  I thought he was just repeating things from "Sponge Bob" episodes!  He likes to be in enclosed spaces--the dog kennel, my hope chest, under the table, and in boxes.  A red flag went up for his teacher when Aiden didn't react to the fire drill at school.  It almost seems like Aiden needs more sensory input.  There are many classes available to learn more about this.  I plan to go to every one I possibly can.

I'm not sure if this is related to sensory concerns, but Aiden thrives on routine (as do many children with or without autism).  Aiden used to wake up screaming every morning.  The only thing that worked was a morning routine.  We would give him milk, put him in the rocking chair, and turn on a movie.  We learned to leave him alone for "his time".  It worked!  We did that every morning for about a year until just recently.  He finally gets out of bed pleasant and playful without a movie or milk :)

Diet concerns~

Aiden has a very limited diet.  He only likes really salty, spicy, and/or sweet foods.  Ok, who doesn't, and there are many, many children who are "picky eaters".  However, this was a concern for the Speech Therapist, and a red flag for the Waisman Center.  He won't eat fruits or vegetables at all (he puts them in his mouth and spits them out).  Thankfully, he will drink vegetable juice and fruit juice.  He loves spicy pumpkin seeds, baked beans, and peanut butter (with the sugar of course).  He won't eat meat of any kind except beef jerky (just what a Dietitian wants to feed her 3 year old).  He will only drink chocolate milk, and he eats yogurt.  The rest is all refined carbs--sweet cereal, salted crackers, tortilla chips.  I make a healthy dinner, and Aiden will eat the croutons off the salad, eat only salad dressing, or eat a little bit of bread.  He finally ate a PB&J for the first time this month!  Mixed food?!  What?!  Progress! :)  

Motor Skills

While Aiden can "run like the wind," jump, and walk a balance beam, he can't ride a bike, or swing on a swing.  I'm not sure what age is appropriate for such things, but apparently it is a concern.  He also has a hard time using utensils according to the Occupational Therapist.  My assessment of Aiden indicated little if any concerns in this area.  However, the OT's assessment was dramatically different.  Again, I don't know what is age appropriate for a 3 year old.  I'm grateful Aiden learned to walk at a young age.  Now if only he didn't run away all the time!!!!  I can't wait to see what Aiden can do with the help of his OT! 

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One day I noticed a woman talking to herself and pushing a doll in a stroller up and down the sidewalk.  I thought, "what lessons does she have to learn in life, if she doesn't comprehend how life works?"  A thought came to me.  Maybe it is us who need to learn our lessons through her.
   
The "pieces" are slowly coming together in my mind.  Aiden is developmentally delayed.  But, Aiden is still Aiden, and I love him for his energy and his sweet spirit.  He is in my life for a reason, and I wouldn't change anything about him :)

Coping

I asked my husband the other day, "how are you handling all this?"

For me, I cope by writing this blog, eating too many carbs, exercising (I hope that is making up for the carbs), keeping perspective, and prayer.  I wake up at crazy hours (it is nearly 2 AM) and think about Aiden.  My mind is constantly thinking about Aiden's milestones, and how different he is from my 16 month old.  The older Austin gets, the more clear the pieces of the puzzle come together regarding Aiden's regression at the same age.  Aiden sat up at 5 months, crawled at 7 months, cruised at 9 months, and walked at 12 months.  He waved bye-bye, pointed, said "ball, "ma", and "da" before the age of 1.  He seemed to make little progress after that.  From what I've read, some children show signs of autism in infancy, while others "regress" by the age of 2-3.  While Austin has quite a personality, I don't remember Aiden's coming out until he was 18 months old.  He was a very easy going child until then.  

Aiden became very challenging.  He learned to communicate with tantrums, throwing objects, hitting and screaming.  He runs away constantly.  We go outside to the car and he is ALWAYS half way down the block.  I take him to the mall, and he runs away.  He doesn't seem to understand danger.  I'm constantly afraid that he will run into the street someday and get seriously hurt.  That is very stressful as a parent; especially having a second child to look after.  I blamed it on the terrible 2's and 3's and his difficulty with speech.  There were many times when I didn't handle the situation well.  I'm slowly forgiving myself as a parent for my lack of patience with him.  At least now I have a little more understanding.  I'm trying to put myself in Aiden's shoes.  I am determined to treat Aiden like I treat Austin.  Even though I don't know what Aiden understands, I talk to him like he knows and understands what I'm saying.  It is difficult to balance my time and energy between the 2 of them!  Yet, I'm determined to make them each feel loved and special, and give them equal attention.  

What was Abe's answer?  "Aiden is still Aiden."  Nothing will change the love that we have for the little boy we have raised for 3 years.  I couldn't agree more.                     





Controversy

WARNING--controversal subject matter. 

Austin, my 16 month old, had a well check today.    I had to make the decision to continue with his vaccination schedule, delay it, or stop it all together.  I don't blame anything on Aiden's special needs, but I do want to make an informed decision on what is best for Austin.  I know what the research says, and I know what the concerns are.  I've struggled with this decision long before we knew Aiden was autistic.  I went into the appointment with the decision to wait on Austin's vaccinations for now.         

I love our Pediatrician.  We discussed my concerns for a second time.  I was unaware that vaccinations--except the flu shot for older children and adults--do not contain the preservative that contains mercury.  (Who the heck thought that was a good idea in the first place?!)  Aiden never received a shot that contained  mercury, and neither will Austin.  If I waited, Austin would get more than 5 shots next time--no thank you.  

My thoughts...I work in a field based on science.  The medical field is based on scientific facts, and so is the field of nutrition.  To deny this woman's 20+ years in the field, and her own research and knowledge, would be denying my own education.  I trusted her.  I had faith in her and in my own education.  There is a lot of "knowledge" out there.  Some puts significant fear and doubt in my heart.  

I believe answers come through preperation and prayer.  I've done the research, and I've prayed for help with the decision.  Austin received his shots today, and I'm at peace with that decision.       

On a positive note, the doctor was very encouraging about the WEAP Project--Wisconsin Early Austism Project, and wants Aiden to be a part of it.  Children do so well in the program that some even "graduate out".  I have renewed hopes that Aiden will progress well once he gets all the resources he needs. 

School

'A teacher affects eternity; no one can tell where the influence stops.' ~Henry Adams

I'm more and more grateful for the men and woman who dedicate their lives to teaching our youth.  I believe teaching is a calling.  I hope Aiden has many teachers along his journey that bring out the best in him.  I know I did.     

Aiden's journey in education started with the  Birth to Three Program.  He had 2 terrific speech therapists who worked very well with him.  He slowly made progress.  He also went to a class for children with speech delays 1 day a week.  I was present during each class.  Aiden did great with craft and snack time, but when it came to circle time--forget it.  That never improved over the whole year he was in the program. 

Aiden got his first IEP when he was 3.  His speech was assessed at a 12 month level.  I didn't think anything of this, because the lady met with him 3 times and he never said a word.  At that time he was saying some single words and 1 or 2 sentences.  He could count to 10, and say some of the alphabet. 

Aiden started the Talk N' Learn Program late January of this year after his 3rd birthday.  This time, I didn't need to be there for the class.  I did observe the first class to see if it was right for Aiden.  It didn't go well.  The other children stared at Aiden because he was a complete distraction.  Aiden ran around the room during circle time.  I decided to give Aiden some time in the program, but it never got better.  In fact, his teacher started pointing out things I never noticed at home.  Hitting his head, putting things in his mouth, laying on the floor, playing alone, difficulty holding a crayon, and hiding under the table.  Aiden is not like that at home.  He goes under the table when he is doing something "naughty".  He loves to color--I didn't care how he held his crayon.  Aiden does however, have an issue with putting things in his mouth constantly since he was 2 or so.  He sucks on everything--blankets, stuffed animals, toys, his hands, etc.  He is also a very picky eater, but that isn't anything new for 3 year olds!  Aiden only likes very sweet, salty, or spicy foods.  He won't eat combination foods like pizza.  Apparently, this is related to sensory processing issues.  Aiden's senses seem weak.  The fire alarm went off one day during class.  The teacher said Aiden was the only one who didn't react AT ALL.  I'll note here that Aiden's hearing was checked before he entered Birth to Three, and it was fine.  It was clear that Aiden needed more help than this class could provide.   

Aiden's reassessment was Friday, April 15th.  We met with Aiden's teacher, the Early Childhood teacher, an Occupational Therapist, and a Speech Therapist.  The teacher set a box of kleenex next to Abe.  I maintained my composure.  I knew what was coming.  Aiden has significant delays in many more areas than speech.  Of course, they couldn't say the word "autism," so I explained where we were at with the Waisman Center.  It was almost like they were relieved that I knew something else was going on.  Based on their assessments, Aiden qualifies for Early Childhood Education 4 days a week.  His first day is today.  He will recieve special help from the Occupational and Speech Therapist.  There are 4 children in Aiden's class.  One of the children is also autistic.  I'm grateful for a teacher that recognized Aiden needed more help than she could give him.  I hope that Aiden finally gets the help he needs.  I'll pray daily that his new teacher is more patient than I have been :)

Gratitude

It is my firm belief, that no matter what your circumstances, there is always something to be grateful for.

I'm grateful that:
* We recognized that Aiden's speech was delayed at 18 months old, and we got help right away.  He has been in speech therapy ever since, and made good progress.

*I gave up money to be home with my children as much as possible.  I've met some incredible mommys who have helped me grow as a mother and friend.  I've never missed a single childhood milestone, and the kids and I get to go on many adventures together.  I've found happiness through centering my life around my children--not my career.  I'm grateful for the friends Aiden and I made, and continue to make, along the way!

*Aiden has many strengths.  His motor skills are incredible.  He could walk a balance beam at 2 years old and continues to run a whole mile without stopping.  I believe in the power of physical activity, and I'm grateful we can run together! 

*While some children with autism don't want to be touched, Aiden is the opposite.  He thrives on sensory input.  He is a very loving, sweet child.  He will give hugs and kisses, and say, "it is ok" to his little brother.  I cherish those moments.  I'm grateful he lets me cuddle. :)

*We have Austin.  Although we have an extreme lack of girls in our extended family, I'm grateful Aiden has a little brother who helps him learn to interact, talk, and play each day. 

*We have a very supportive family who gives this mommy a break when she needs one, and loves Aiden nearly as much as I do! 

*I believe in the power of faith, and I'm grateful to know that God has a plan for Aiden and our family.

Life Changes

This blog was inspired by a dear friend, whose strength and faith through adversity encourages me to be a better mother each day.

There are some days that you will never forget.  I remember sitting here behind my computer; I was pregnant with my second child.  I had a strong impression at that moment---an overpowering feeling that something was very wrong with the baby.  I weeped.  Could I handle such a thing?   Later that day, my husband (unknowing) asked me, "how would you feel if we had a handicapped child?"  I weeped again.  Austin turned out to be a healthy, happy baby boy, and I thought nothing of that horrifying feeling again.  Until Monday April 11th, 2011. 

Aiden, my first-born, shows many signs of autistic behavior--"speech delay, sensory differences, difficulties in peer social interaction and imaginative play."  He is 3 years old.   We heard the word "autism" for the first time on Monday, but we knew going into the appointment this was likely the case.  The word rings in my head over and over, but I'm not quite sure how to handle it.  The only thing I keep thinking is "will Aiden live a 'normal' life?"  I held Aiden for a long time today.  This time only soft, gentle tears came.  I cried because of the unknown.  I don't know what to expect from Aiden, how to interact with him, or what his future holds.  I had no idea this extended far more than a delay in speech.  Do you "overcome" autism? 

Before I can research like crazy, I'm trying to let this sink in and become realty.  I'm not ready yet.  It makes me sad to see Austin (now 16 months old) talk, interact/understand, respond to his name, etc., when Aiden is just now beginning to communicate.  Aiden is finally speaking, but he only repeats the words that you say--a condition called "echolalia" in the medical world.  I wonder when I will finally get to have a conversation with my son. 

I think many parents want to find something to blame.  For me, it isn't like that.  God gave me Aiden.  He is here for a reason.  I love him more than my own life.  Maybe he can teach me a few things about patience, love, and understanding for ALL people regardless of their struggles in life.  Maybe this is how I'm going to learn those lessons best...