Showing posts with label OT. Show all posts
Showing posts with label OT. Show all posts

Sunday, June 10, 2012

Wholeness and Completion Issues


If your child or a student that you teach, seems defiant or like they "just won't listen," then you need to read this blog post.

When my daughter, (who has Asperger's Syndrome), was a toddler I had concerns that she was deaf at times because of the way she would ignore me when her name was called.

Me: "Mary."

Me: "Mary."

Me: "MARY."

Me: "MARYYY."

Me: "MARRRRRRYYYYYYYYY!"

Mary: "What." {Expressionless, without even looking up}



So I did what any concerned parent would do, I talked to her pediatrician who scheduled a hearing test at CCMC (CT Children's Medical Center). Her hearing was perfect.



Completion Issues and Routines



I have learned very much from my daughter. Even after years of being an educator, it amazes me the information that I have yet to learn.

As soon as Mary was able to walk, (which in her case wasn't until 2 and half or a little later), I noticed that she would shut every door that was open. It drove me crazy because I was worried that she would smash her little fingers. I was unaware that what she saw was something "incomplete." In her eyes, that door HAD to be shut. This was perhaps the first completion issue that Mary presented.



Mary has the ability to envision entire scenarios before they happen. Also, until she plays out the entire scenario, she has the innate ability to focus so intently that she can tune everything else out. This is sometimes not just an envisioned scenario but can also be an action that she is accustomed to doing. In either case, you cannot interrupt! Saying or screaming her name will not stop her, and if you physically try to stop her from completing the action or scenario then a major melt down will occur. This is normal for children with sensory issues and autistics. It is commonly referred to as a "completion issue." To many people with autism, things have a distinct shape. A ball is a circle (to a child) or a sphere (to an adult). When this shape is altered it creates a certain amount of anxiety and/or discomfort because the image that they are used to is dissimilar. Any change, be it change of plans or a change in imagery is unsettling to a child with autism. Just like a change in scientific materials will undoubtedly bring about a different concluding result in an experiment, so will a change in plans or imagery bring about a different emotional response in an autistic person.



Routines are extremely important to a person with Asperger's Syndrome. For Mary, part of her weekday routine is walking down the sidewalk to her bus stop. Day after day, I would try to stop her before the end of the sidewalk to keep her away from the road as a safety precaution. Her defiance continued to grow. Instead of walking out with me, she would bolt out the front door in hopes of completing her path to the school bus before I could prevent her from finishing. However, I was unaware that what she was doing wasn't defiance. It was her "completion issue."

To Mary, she had a path and a routine that must be completed before her bus got there. If she didn't complete her path then who knew what would happen next. Autistics need a routine for comfort, safety and security. With all of their sensory issues, they often feel like they don't have much control over their daily lives, which is quite aggravating.

So try to become creatures of habit. I'm not saying set a schedule every day and stick to it, because life changes. However, you can give your kid a great sense of security by creating some routines throughout the day. Trust me; it relieves a lot of anxiety and behavioral outbursts. I will admit that when someone told me to make a picture schedule for Mary at home, I didn't want to even consider it. I admit that schedules are imperative to achieve peace and tranquility, but I also encourage "wiggle room." For instance, have "open play time" (kids can play anything alone or with someone) or "out-of-the-house time," (which can be going to the grocery store or going to the park). At first, I thought I had to plan every second of everyday, which to me is just not practical. Life changes and I want my daughter to know that.



So what I have done, that works for us is to have a "wake up routine," and a "bedtime routine."

Our WAKE-UP ROUTINE

For my family, the kids wake me up at 5:30 almost every day.  I tell the girls to go use the bathroom and get dressed. While they get dressed, I change the baby's diaper and get him dressed for the day. When I am done changing the baby, I go into the girls' room and check to make sure that their clothes match and that the clothes they chose are appropriate for the weather. Then I tell them to brush their teeth. Once teeth are brushed and clothes are approved they are let downstairs. (I have gated the top of my stairs.)

When we get downstairs, Mary has a cup of warm chocolate milk and watches one kid-approved show from our Netflix Instant Queue. Meanwhile, I set up the coffee maker and feed the baby. After the baby is fed, mommy has her coffee and watches the news while the girls eat breakfast. Then we have what Mary has come to call "open play time." The girls can play what they want. Around, ten in the morning I pull out the crafts and do something crafty with them. It can be something as simple as folding a piece of construction paper and letting them use my stamps to make a card for someone; playing with play dough or floam; or something more constructive and planned like the cookie monster foam crafts that we made this morning. At eleven my cell phone alarm goes off to remind us to clean up our craft and make room for lunch. I make lunch. We eat. Get shoes on and begin the battle to brush hair. So we can make it outside by 12:20 to stand at the edge of the road to wait for the bus.

After school, she has a snack and has "open play." At 4:30 my cell phone alarm goes off again to remind me to start making dinner if I haven't started yet. So if the girls are playing outside they know that they have to come inside, while mommy cooks. We eat dinner between 5:30 and 6. Then, bath time, a Backyardigans episode, brush teeth, use potty, read one story, tuck in the girls, lights out then say prayers, and then I sing a certain order of lullabies until they are both asleep.



I highly recommend timers. There is no arguing with the timer. It is concrete. It has helped in so many ways. We even use the microwave timer if one of the girls wants a turn with what the other sibling has. If you don't have a timer on your, stove, your microwave or your cell phone - buy one. You'll thank me later. I have become used to my cell phone since it is always on me if I'm at home, at work, at the park, etc. It is my built in timer.





Whole and Half





Most, if not all autistics, have aversions to food. In other words, they are extremely picky eaters usually because of their sensory issues. However, you can help alleviate some of the food tantrums by understanding this next issue.



One of the worldwide habits that parents do for their young children is cut their food. Why? To avoid choking. It is just a natural occurrence at any dinner table to see a parent cutting a kid's dinner up for them.

However, cutting up food to some kids with autism creates a problem. For instance, cutting a strawberry in half can be disturbing because the fruit is incomplete. So now the child is not only struggling with the temperature of the strawberry (was it refrigerated or room temperature) and the texture (all those tiny little seeds), but now they have to deal with the food not being whole. This of course leads back to completion issues. They have an image of what a strawberry should look like and you have altered that image. This provokes anxiety and frustration.

In no way, am I suggesting that you stop cutting your child's food. However, if they are old enough and have a full set of teeth, you might want to consider it.



In conclusion, there is light at the end of the tunnel. This completion issue has many benefits. For instance, Mary knows that she cannot step into the street until the bus door is open. Once I learned about completion issues, I was amazed to learn that Mary could run full speed up the sidewalk but she would stop dead in her tracks when she got to the edge of the road. Why? Because the path was complete and she couldn't move until the next task, which is waiting for the bus driver to open her door. My neighbor asked my one day, "Aren't you scared that she'll run into the road?" I confidently smiled and said, "I know she won't." She said, "How can you be so certain?" I said, "Because that would break the routine. She has programmed herself to know that she takes 6 steps out the front door, twelve to the left and fifteen straight and she can't move until the bus door is open." Mary has never once, stepped into the road until that bus door is open. Oh, and in case I haven’t mentioned it - every autistic person is differently affected. I am just trying to shed some light on the issues that I have seen and lived first hand so that other parents and educators might be able to understand why an outburst or meltdown occurred and possibly prevent one next time.


Monday, May 28, 2012

How did I know my daughter was autistic?


To be completely honest, I thought I was well educated on special education.  I mean after all, I have worked with several different students with a wide range of learning disabilities, physical disabilities, etc.  However, reality didn’t set in until I had my own child.  Let's face it, there is a huge difference between reading something in a book and living it.  My first child was a beautiful, healthy, bright eyed little girl.  As an educator, I had such high hopes.  I hung black and white pictures next to her changing table and read to her every day.  Then one day, my experience in education told me something was wrong with my beautiful baby.  Since her birth I struggled to get her to eat. She was very thin and the insurance company even sent someone to weigh her weekly.  All she did was sleep and then as she got older, it was impossible to get her to sleep.

Eventually, I learned that my daughter is autistic.  To be more specific my oldest daughter, Mary, has Asperger’s syndrome. To me it seemed like a very long time to get her properly diagnosed and treated. 

Today, when I tell people that I have a daughter on the autism spectrum they always ask 2 things:

1.“When did you know?” (Or what symptoms did you notice first?)

I always say, to be honest I knew almost immediately. I was sure by the time she was six months and had no doubt by the time she was one, that something was wrong.  At first I thought she had S.P.D. (Sensory Processing Disorder).  All autistics have sensory processing issues but NOT all people with sensory issues are autistic.

And

2. “How did you know?”

 In my daughter’s situation, it was her sensory sensitivities that were very apparent from the beginning.  Sensory sensitivity or sensory processing disorder (S.P.D.) is a neurological disorder that has trouble taking in, processing and responding to sensory information from not just the five senses (sight, smell, taste, touch, hearing) but with the proprioceptive and vestibular senses, too.  I had never heard of the latter two so let me explain.  Proprioceptive dysfunction is when your body doesn’t know where it is in space so your body has trouble positioning your limbs in relation to each other, which makes people with a dysfunctional proprioceptive sense appear clumsy. The vestibular sense is the sensation of body rotation, movement and gravitation that are controlled by the inner ear, which becomes apparent when you have a child that enjoys spinning for 20 minutes and can still walk a straight line.

I didn’t know what was wrong, but I knew that something was awry.  So I started to make a list, which was very helpful to medical professionals.  I recommend that everyone does the same with their child.  Click here to view a checklist of SPD related symptoms. http://spdsupport.org/resources/symptoms.shtml



Below is the list of some of the sensory related symptoms that I noticed and when my daughter Mary reached milestones.

Hyposensitivity Vestibular Dysfunction

  • Craves fast, spinning, and/or intense movement experiences
  • Loves being tossed in the air
  • Could spin for hours and never appear to be dizzy
  • Always spinning in a swivel chair/getting upside down positions
  • Loves to swing as high as possible and for long periods of time
  • Is a "thrill-seeker"; dangerous at times
  • Rocks body, shakes leg/s, or head while sitting
  • Likes sudden or quick movements



Proprioceptive Dysfunction

  • Seeks out jumping, bumping, and crashing activities
  • Kicks his/her feet in chair while sitting at table
  • Sucks on fingers
  • Loved to be swaddled but is satisfied to just be covered when sleeping
  • Prefers clothes (and belts, hoods, shoelaces) to be tight
  • Loves/seeks out "squishing" activities
  • Enjoys bear hugs
  • Excessive banging on/with toys and objects
  • Loves "roughhousing" and tackling/wrestling games
  • Frequently falls on floor intentionally
  • Loves pushing/pulling/dragging objects



Auditory Hyposensitivity –

  • Loves to make noise
  • Loves loud music
  • Needs directions repeated over and over



Hypersensitivity to Oral Input –

·         Extremely picky eater

·         Drinks must be a certain temp

·         Extremely picky about cups and feel of nipples



   As an infant Mary…

·         Never mouthed objects even when teething

·         Never put feet down to bounce on legs of a person; or in the “jolly jumper” or exersaucer

·         Never put pressure on her legs

·         Would raise legs into a seated position and hold them there when asked to stand up

·         Showed poor motor skills – (most of these were met with the dedication and hard work of the PTs and OTs)

·         rolled over (Nov. 10th 2007 – 4 months old),

·         disliked being on belly as an infant,

·         delayed in crawling (day before 1st bday),

·         pull to stand (Oct 2008-15months old),

·         cruising (Nov 2008-16 mo. old),

·         stand up by herself in middle of floor (March 2009 – 20 months), take her first steps (mid January 2009 -18 months old),

·         will take a few steps with assistance (Feb 2009)

·         will toddle on own (April 2009 – 21 months)

·         When she finally did roll over she wouldn’t roll back to her original position

·         She doesn’t kick one leg at a time – instead she thrusts her legs from her hips bilaterally (stimming) Click here for a definition of stimming - http://en.wikipedia.org/wiki/Stimming

·         Took awhile to adjust to the feel of water, grass and sand (for months she had to be sponge bathed) (wouldn’t venture off outside blanket for fear of touching the grass) (took several days to acclimate her to the sand box)



As a toddler Mary…

·         Is constantly seeking thrill

·         Loves to rock

·         Loves to be upside-down

·         Loves to bounce

·         Loves to spin

·         Loves to climb

·         Loves to swing as high and fast as possible

·         Becomes distressed about having nails clipped or things in her hair

·         Likes to wear hats/hoods

·         Must have a hat/hood on to keep her hair from flapping against her head when jumping or swinging

·         Hates the wind or anything that causes her hair to move

·         Has frequent temper tantrums that can last 45 minutes

·         Has many mood swings

·         Becomes violent at times with herself (for no apparent reason will start hitting herself on the head or head-butting things)

·         Needs to be wrestled down to have her diaper changed

·         Likes to wear sunglasses

·         Does not stay asleep – very easily awaken

·         Is nearly impossible to get to sleep

·         Is extremely affectionate with people – loves hugs...although they usually have to be requested or initiated by her

·         Likes to sit on different objects – will sit on books, boxes, cans, toys, etc.

·         Sucks two fingers upside-down to soothe self

·         Randomly throws herself onto the floor

·         Is extremely difficult to feed (she is a very picky)

·         In constant motion – when sitting or excited her legs and arms are constantly flailing

·         Bangs or hits her head –not just when frustrated

·         Purposefully sticks her fingers in the back of her throat to initiate her gag-reflex

·         Seems very lazy – if anything is too heavy or too much work she gives up

Today, Mary is doing great.  Most people don’t even realize that she has a behavioral disability.  If it wasn’t for the early intervention that I sought after, I wouldn’t be able to sit here today and type this.  Don’t get me wrong, there are days or places that she still cannot tolerate.  For instance, Stop & Shop has lighting that still sets her off today.  However, things have gotten a little easier and I am fortunate to have an autistic child with the ability of speech.  After she is calm, we can sit down and try to figure out what set her off. My husband and I have also learned to watch for cues that signal us that she has had too much and needs to be removed from an environment.  This kind of learning, you can't learn in a book.  Some things, must be lived.