Tuesday, June 24, 2014

The Proprioceptive System

Proprioception is the process by which the body can vary muscle contraction in immediate response to incoming information regarding external forces, by utilizing stretch receptors in the muscles to keep track of the joint position in the body.
__ seeks out jumping, bumping, and crashing activities
__ stomps feet when walking
__ kicks his/her feet on floor or chair while sitting at desk/table
__ bites or sucks on fingers and/or frequently cracks his/her knuckles
__ loves to be tightly wrapped in many or weighted blankets, especially at bedtime
__ prefers clothes (and belts, hoods, shoelaces) to be as tight as possible
__ loves/seeks out “squishing” activities
__ enjoys bear hugs
__ excessive banging on/with toys and objects
__ misjudges how much to flex and extend muscles during tasks/activities (i.e., putting arms into sleeves or climbing)
__ difficulty regulating pressure when writing/drawing; may be too light to see or so hard the tip of writing utensil breaks
__ written work is messy and he/she often rips the paper when erasing
__ always seems to be breaking objects and toys
__ misjudges the weight of an object, such as a glass of juice, picking it up with too much force sending it flying or spilling, or with too little force and complaining about objects being too heavy
__ may not understand the idea of “heavy” or “light”; would not be able to hold two objects and tell you which weighs more
__ seems to do everything with too much force; i.e., walking, slamming doors, pressing things too hard, slamming objects down
__ plays with animals with too much force, often hurting them

Really, Do You Know?

People say to me, when I'm telling my life struggles and amazements, “Oh yes, I know.” And what I want to say is “Really? Do you really know?”

Do you know expectations, like those that come home from the hospital with that beautiful babe of what her future holds? Do you know what it is to have those expectations crossed off one by one or all at once, only to have them replaced by new ones? Oh yes, you know expectations, but do you know hope?

Do you know achievements, with all their hard work and determination, big or small or somewhere in between? Do you know what it is to spend hours on each and every baby step? Oh yes, you know achievement, but do you know triumph?

Do you know teachers and aides who give their all every day for the time they are with your child as well as hours after in planning and preparation? Do you know what it is to put 6 hours of effort into 40 minutes of success? Oh yes, you know teachers, but do you know heroes?

Do you know patience, and the endurance of cleaning up spilled milk every day for years and not crying over it, or wonder if she’s doing it on purpose. Do you know what it is after years of getting milk all over your hands to go nine whole days without a single drop of milk getting spilled. Oh yes, you know patience but do you know joy.

Do you know judgement, good or bad, in the looks of others as you help your child navigate her day? Do you know what it is to rise above the scorn and scowls and do what needs to be done when your child is having a “moment”? Oh yes, you know judgement, but do you know strength?

Do you know Christmas, and all its miracles and everything it stands for, or perhaps another holiday held sacred to you? Do you know what it is to almost lose everything, even Christmas, in the blink of an eye, but to have it returned to you? Oh yes, you know Christmas, but do you know gratitude?

Do you know love, and the warm fuzzy feeling that comes with snuggling with your child when she’s getting ready for bed? Do you know what it is to read all the reports, and watch your child “blow it” at another chance at a relationship and significantly impact your relationships as well, and to love her anyway? Oh yes, you know love, but do you know unconditional love?

Do you know words, and the power of communication and emotion they create, especially those four amazing ones that tug at your heart. “I love you Mommy.” Do you know what it is to wait for years to hear any words and even longer to hear those magic words. Oh yes, you know words, but do you know miracles?

October 18, 2010 by Lily Belland
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Monday, June 23, 2014

Too much of a good thing

 We went to the beach for what was supposed to be relaxing and great sensory input. Doc loved it the last two times we went. Now that school is out there are more people sharing the beach. Doc was fine for the first ten mins, then she started stimming. A little voice in my head said "Repetitive movement = too much change" Thank you, Danny from Asperger Experts! I asked her if she wanted to go sit for a bit, she agreed that was a good idea. She began to fuss and then "shut-down", I could tell there was a meltdown about to happen. I asked her what was bothering her, she didn't respond. So I gave her a few minutes. "Maybe she tired?" Horsey said. I didn't think so. After some time Doc answered my question very quietly. "Everyone here is really big and I'm tiny." She said. "There are tiny kids her too, see!" Horsey said as she was pointing to little kids running with sand pails. "No, I don't want friends, I want them to leave! The extra amount of people was the problem.  Then she started asking to leave and go home. So to be fair to the other kids I told everyone we had 10 mins and then we had to leave. Doc sat on my lap for that 10 mins "people watching". Three, Two, One times up! I said as I started packing up and headed to the car. By now everything was bothering Doc. Door didn't open fast enough, kids were in her way, straps in her seat were twisted and her towel wasn't folded right. Just then that little voice in my head said "Needing to control is also part of too much change." I took a deep breath and calmly buckled her in. She calmed down on the way home.
You never know what to expect on any given day. All you can do is know the signs, remove them or find a "safe place", and reassure them their ok.
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Tuesday, June 17, 2014

Confusion in Holland

   Schools out, warmer weather, more daylight, and outdoor activities. Yahoo! Fun! Not for us.. Our family's first week of summer is the hardest due to these seasonal changes. They present challenges to the carefully orchestrated daily routines.
Today is consisting of one hiding, another pacing & reliving he's school scheduled out loud hour by hour, two throwing fits, and one bored.

Here's are some things that may help ease into summer:

1.Talk about the change ahead of time.
2. Helping your child create summer structure of his own.
3. Keep their "safe" routine as normal as you can.
4. Vacations - include your child when planning.
5. Take some time for yourself too!

Will we survive the summer?
At some point, you will have to interrupt routines and change plans. If you can, the most important thing you can do is notify the child ahead of time. In the event you can’t, try to talk on a regular basis with your child about how surprises sometimes happen in life. Transitioning to summer can be hard, but with trial and error, with discussion and planning, with living one day at a time, you can begin to find that happy middle ground.
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Tuesday, June 10, 2014

Tornado in Holland..

Anyone who loves someone with ASD knows that routines, sameness, schedules, and rituals are extremely important to them. The slightest change in something we may think to be minor could cause major meltdowns that last for days.  For the them, these things are more than a need... they are a requirement! 
Routines, schedules, rituals and habits all provides comfort and predictability in a world that is, all too often, chaotic and unpredictable. We all resist change regardless of 
our mental status. It keeps chaos at bay, so we get the peace of mind that we need.  

"According to Dr. Laura Markham (Elkins, n.d.), routines offer additional advantages of reducing or eliminating power struggles, initiating cooperation, teaching/learning to manage one’s own activities, teaching/learning the concept of anticipation, help adherence to schedule, and help parents and other caregivers with “maintaining consistency in expectations.”

ASD individuals, all these benefits apply, but consequences going off the routine, having change in their lives is much more severe. 
As some of you may know we are having some construction done on our house to expand the living space. Doc is very much the routine queen, but I was hoping this would not affect her. She was a bit worried yesterday when they officially started.  Asking lots of questions like "What are they doing? Why?" as she looked out the door.  After the workers left I took her out to swing (it's part of her routine), then we went to check out what they did . "Why did they break our house?!" She asked "So it can get bigger! Won't it be nice to have more space?" I said.  She thought for a bit.. "I need to doctor it." She said, as she placed some dandelions in the dirt where the porch once was...closure.  I remember thinking that went well.
Today started off just like any other day, waited for the buses, dropped Hulk off at school, then coffee & a Boston Cream donut for Doc (also in her routine).  I had to take Mr. Magnificent to a doctor's appointment.  Doc would be going to spend time with Horsey.  That right there was enough to issue a severe thunderstorm watch in Holland!
After we drop Mr. Magnificent off at school, we went home. I knew she had a tough morning as I carried her into the house, asleep. She promptly woke up and requested "little kids shows" (Disney Jr), as she does everyday. I tried my best to keep the rest of her day "normal".  At 3:10pm it was time to wait for the buses, I buckled her in to her carseat and headed down. She always gets agitated whenever she's in a motionless car, so Holland issued tornado watch. Crying and promises that she'd stay seated filled the car. She wanted out! 

After Hulk got off the bus I unbuckled her to wait for Tink.  The atmosphere quickly changed to a tornado warning, she had no choice but to give in. One of biggest meltdowns I have ever experienced. All I could do is ride it out with her till it was over. The storm slowly passed at home. Exhausted and so over this day, she gladly welcomed bedtime, as did I.  We take each day as it comes here in Holland, hoping for brighter skies soon. 

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Elkins, M. (n.d.). Ready, set, routine: the importance of routines in children’s lives. Lower Shore Early Intervention Program. Retrieved from http://www.lowershoreccrc.org/routinesarticlemelkins.htm.

Monday, June 2, 2014

ASD, Take two!

"Parents who have a child with autism have about a 1 in 5 chance of having a second child with autism, a far greater risk than previously believed, new research shows." - New York Times

  My youngest daughter, "Doc"has always had very high levels of anxiety. Very cranky baby, crying unless she was nursing or sleeping. We assumed she was colic. She also experiences many sensory and repetitive behavior. In some ways she reminded me of Tink (her older sister), except Doc was very verbal.

9 months old

  At one years old I taught her to sign, using ASL.  She would sign "bird" in excitement when she saw one. "Cracker" was her all time favorite.  Some people thought she was deaf.  It was her way to communicate till each new word became vocal, so there is less frustration. When she start to walk, we noticed a limp, We called it her hitch in her giddy-up. One ortho visit later we found out her left leg was a little shorter. She still has some leg issues.
Update: Doc has been diagnosed with Hypermobility Syndrome. She has leg pain after a busy day and we're still working on finding out why.

ASL for "bird"
ASL for "grass"

  By eighteen months she had many words, her favorite was "giraffe". She was a picky eater, very oral seeking, hated her feet off the ground and anything that was animated (moved by itself). Certain noises and bright light bothered her also.

Sensory hiding spot 

  Doc got her nickname by age two. She developed a passion (almost an obsession) with doctors, all kinds. One day she came to me asked "Do you have a bleeder?" We soon figured out it was her way of asking if someone had a boo-boo. She used to walk around the house with kitchen tongs fixing imaginary splinters.  We attended a local playgroup. She would rather swing instead of play the kids. Anything repetitive she would enjoy (still does). I was concerned and wanted to get her help, I tried OT. They gave her an eval. Sensory Processing Disorder (SPD) was their answer, which seem to fit. I soon realized this OT was not helping her with her sensory needs. After moving to a better one, she was drop due to insurance not covering SPD.  November 2012 came, Doc decided she was done with diapers and was dry during the day. December she regressed and was back in diapers by mid January.

Doc. the bear

  Three years old brought a lot more challenges for Doc. She was aggressive and bossy. "You're not my best friend anymore!"- What she would say when she was mad at us. She was also lining-up objects and started repeating phrases from movies/tv shows. At first I thought this was neat that she was able to memorize them and use it in a conversation of her choice. This was around the the time Tink was diagnosed with Autism Spectrum Disorder (ASD2). I learned what Doc was doing was actually called Echolalia.  By this point I had a feeling Autism was paying another visit to our house. I called our local early intervention to set up an appointment. On the day of the preschool eval, Doc was calm and happy. Before the testing in the waiting room, Doc started lining chairs up. The examiner came and got us, not even noticing Doc's creation. The testing consisted of one-on one time with an adult in a quiet little room. Perfect environment for Doc, except we all know this is NOT how preschool really is. She performed perfectly and conformed very well. We got a letter in the mail stating at this time no IEP will be issued. My husband was in denial. He told me I was a research-aholic. No, I was mom with concerns, they are worse than the FBI! A few months went on and I continued to teach him about ASD. Then one day he texted messaged me from work. It's said "It IS ok to be different!" I knew right then that he was finally on board and we could work as a team to get Doc what she needed. November 2013 came and like clockwork, Doc was potty trained again. This time completely. December came and went, January, February (Doc turned 4) and March. A few accidents started happening. Then in April, around Easter she regressed for a second time and ended up back in diapers.

    Most of the time, this is the easiest way to travel. Sun was bothering her that day..

 At age four her routine became very rigid, I had to start using a visual chart on the iPad (something that we use with Tink). It worked!  Some days I would have to add something to our morning routine and that would cause a meltdown. She started not wanting to leave the house and only watching her "Little kids shows"- Disney Jr. A few of new stims were jumping and flapping her hands. She also started to flee in an overstimulated situation. 
It started off with her requesting to go to the bathroom, but then not needed to go. We started to call these sensory breaks. Then on day during a trip to BJ's she started to feel overwhelmed, got upset and bolted to the back of the store. I walked quickly, but calmly want after her (didn't want to cause a scene). When I found her she was scared, it was like she didn't recognise me either (most scariest moment). As I picked her up I calmly comforted her and told her she was ok, as she was kicking and screaming. I felt like I was kidnaping my own child. What a terrible feeling! The looks. Oh Man, the looks! Worst. Day. Ever!

  She is a very bright little girl with a lot of challenges. I love her to pieces. I just want life to be easier for her to maneuver in. We will be seeing a behavioral pediatrician soon. Time will tell...

Update:1/14/15 Doc was diagnosed with ASD1, which was once called Aspergers Syndrome. It's good to have some answers.
Update: 3/28/15 Doc was approved for a Behavioral Health Professional (BHP) at home. We are also looking in to more test due to her aggressive behaviors. She is doing the best she can.