Posted in Autism, Behavior/ ABA, Down syndrome

Blog #94~Advice for Special Needs Moms

Blog #94~Advice for Special Needs Moms

I’ve been raising a child with special needs for 20 years. My son, Nick has Down syndrome and was later diagnosed with autism. Being a parent is rewarding but also challenging and stressful. Having a child with special needs amplifies things even more. I’ve felt ashamed, exhausted, and frustrated piling on mounds of guilt along the way.  With Mother’s Day coming up I’ve been thinking about a few things. What advice would I give to that 33 year old mom back in 1994?

Joleene Pic

Advice for Special Needs Moms- 5 Things I’ve learned

1.  Let go of being the helpless victim. Take back control and commit  yourself to action. Ask for help and accept help from family, friends, teachers, therapists, support groups and special needs agencies.

2.  Adopt a new attitude when you feel bogged down.  How about this mantra? “Today I will do just one thing to move me forward to where I want to be.”

3.  Learn from others but set your own course. It’s easy to be overwhelmed when you see other moms trying gluten free, casein free, organic dietary programs, experimenting with essential oils, driving all over town to ABA behavior/OT/PT/Speech therapy programs and recreational activities. Forgive yourself, let go of those feelings of inadequacy.

4.  Which leads right into GUILT!  Society’s expectations don’t have to be yours. Don’t let anyone pack your bags for a guilt trip.

pintrest cartoon

5.  Take time to breathe, pray, meditate, exercise and feed your soul. A rested mind, body and spirit will help you navigate those rough, rocky roads.

zen

Do I follow this advice every day? Hardly, this morning I procrastinated  waiting until Nick ran out of his meds before making  a doctor appointment. I also threw out a package of moldy hot dog buns buried in the pantry. The floor hasn’t been mopped in two weeks and I sat around like a slug watching this movie for the umpteenth time with Nick yesterday….

The other guys

Do I feel guilty about it? Not near as much as I use to. The mounds of guilt have been reduced to a few, small piles I step in from time to time.

So, to all the special needs moms out there I wish you a Happy Mother’s Day. Slow down and do something you enjoy.  Go have a glass of wine with your girlfriends. Take a day or at least an afternoon to do nothing but fun things you enjoy. Please carry that with you each day as you make your way down that rocky road. That’s what is in my noggin this week.

~Teresa 🙂

Nick Sox game

Posted in Autism, Behavior/ ABA, Down syndrome, Uncategorized

Blog #93~Down Syndrome & Autism and Getting Help

Blog #93~Down Syndrome & Autism and Getting Help

Last Saturday was the National Down Syndrome Association (NADS) Retreat. NADS serves families in the Chicago area.  This retreat is specifically for families that have a child with Down syndrome and autism. There is a children’s program that includes play time and swimming where respite workers are provided by NADS. Nick loves going to the retreat.

Nick enjoying pool time at the NADS Retreat a few years back……

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The children’s program also has music therapy.  Here’s Nick jamming last Saturday……..  🙂

nads retreat music therapy

The parent agenda this year was to tackle some of  areas that we’ve all been struggling with.  Dr. Louis Weiss, Ph. D. lead a guided discussion of the top five topics chosen by the families attending the retreat. The five areas of discussion included:

  1. Getting respite care and funding for it.
  2. Teaching
  3. Behaviors
  4. Parental and family stress
  5. Dealing with systems.

One family posed the question about their child and regression of behaviors. Dr. Weiss made a comment which resonated with me. He said that regression can happen during periods of transition. Regression is a way to prepare oneself to move forward. If a person doesn’t feel safe they will pull back first before they can launch themselves forward.

I had as Oprah says an “Ah-ha moment”.  Last fall, my son Nick (19 years old) out of nowhere began to wet his pants repeatedly at school. I figured it was stress because he was starting the new transition program. But after hearing this comment it all made sense now. He was trying to deal with a new setting and a crowded bus. Nick didn’t feel secure and his behavior reflected just that.

Speaking of stress, there is a great deal of it for families raising a child with Down syndrome and autism. Let me put a lens on what we talked about. Imagine having to wash the sheets every day after your 14 year old wets or soils them.  Or how about this?  The constant worrying that your 12 year old may take a dump in the neighborhood pool and shut it down. Picture a 15 year old getting off the bus and plopping down in the middle of the street.  He won’t  budge for a solid hour.  You have to stand there and direct traffic around him because no one stops to help out, and you forgot your cell phone.

Here is the takeaway that I got from this session. Dr. Weiss suggested that we need to figure out what causes us to suffer. Then look at re-framing the story, in essence figure out a way to fix it. Maybe it’s hiring a sitter to come in and wash those dirty sheets. Perhaps counseling could help with the stress.  In addition, just getting  a new set of eyes on the problem may help.  This can be done by contacting an advocate or behavior support specialist.

We spent the afternoon building a resource list, networking, sharing our struggles and offering advice to support each other. By the end of the day, parents walked away loaded with more power in their arsenals. I am grateful to have the support of NADS and the retreat. It’s good to share struggles, successes and get help.  Plus, no one in our group bats an eye if a kid is tapping shoe insoles against their mouth, stimming on a karate belt or plopped right in the middle of the corridor.  These guys remind me that I’m not alone on this road navigating Down syndrome and autism. That’s what is in my noggin this week.

~Teresa

🙂 One last thing, Did you notice I changed the title of my blog to Down Syndrome With A Slice of Autism? (Though some days I think it’s the other way around) 🙂

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I also have a new Facebook page with this title. You will find some new things here including weekly videos of Nick being silly. If you are on Facebook,  please take a look at this page: Down Syndrome With A Slice Of Autism and I’d appreciate it if you would like the page!like button

 

 

 

 

 

 

Posted in Autism, Behavior/ ABA, Down syndrome, Fun Side of Nick

Blog #90~Autism Awareness Nick Style

Blog #90~Autism Awareness Nick Style

It’s April which is “Autism Awareness Month”. Believe me I am quite aware of autism. Nick never lets me forget, nor anyone else who is around him. Last week was spring break. My twenty year old son who has Down syndrome and autism was lighting up more than just blue. Here are the highlights…

Day one of spring break:

Nick is pushing every button he can find, microwave and bathroom fans, turning up the TV volume to 99 and finding the one button on the iPod home which blasts Hispanic radio music. It’s going to be a long week. The music is heavily laden with the sounds of trumpets, trombones and accordions. By the way, the radio station is WLEY-FM (107.9 FM La Ley) features a regional Mexican music format focusing on Ranchera.

la ley

Day two of spring break:

It started out with Nick popping up at 6:30am. He came in and pressed the iPod home button to 107.9FM next to my bed as he giggled and let out a big fart. He followed this up with an early screening of “Grown Ups” (volume level 99) and blasting the water faucets. Thankfully Lara, his respite worker took him to see the new Muppets movie and out to lunch. That afternoon, he crawled into bed with his DVD player wearing his blue sunglasses. The “Grown Ups” movie may get deep sixed before this week is over.

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Day three of spring break:

I got a 5:15am wakeup call from Nick, (mind you on any school day I have to throw a stick of dynamite in his bed to wake him up). I put him back to bed and managed to sleep in until 7:30am. Morning coffee time was drowned in you guessed it another showing of the movie, “Grown Ups”. All day long nothing but yelling, tennis ball can tapping, and microwave/ phone intercom button pushing. In between those antics, Nick would run upstairs to push the iPod to 107.9. Viva Nick! The noise can be mind numbing, not to mention the snot rockets he blows and wipes across the flat screen TV. Today is “World Autism Awareness Day”. Believe me I am well aware of it.

Day four of spring break:

It’s cold and rainy, but at least he slept in until 7:30am. Nick watched movies with his respite worker while I went in to teach stability ball and step classes. He was even sillier today, must be the cabin fever. I’ll let the pictures speak for themselves.

Silly guy 🙂 …..

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His favorite dumping spot, behind the flat screen TV.  Good news, I found my shoes….

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Poor Stuart Little…..

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Day five of spring break:

It’s my day off from teaching and thankfully Nick slept in until 9:00am so I was able to enjoy my first cup of coffee in peace.  He was pretty good today, with the exception of a few button pushes, blasting 107.9 and flicking the bathroom light on and off while I showered. It was cold and blustery so we bundled up and headed out to Taco Bell.

Nick loaded up with stims……

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He was so excited when we got there. Just one problem, the ice machine wasn’t working. Nick stood there pushing the ice button to no avail for several minutes. He wouldn’t budge. One thing about autism, any change in routine is a possible trigger to set him off.

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I finally got the attention of a worker who was able to fill up our cups with ice behind the counter. Meltdown, deflected….. whew!

Day six of spring break:

Hallelujah, Nick slept in until 10:00am! Thankfully he chose to watch a different movie…….

The other guys

I took him out to eat at Burger King. We usually go out later around 1:30pm to avoid the lunch crowds and curious stares. I couldn’t believe it, when we walked up to the drink station guess what? They were out of Sprite…. are you F’ing kidding me?

Nooooooooooooooo…….

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I asked Nick if he wanted Coke or Minute Maid Lemonade. He screamed and pinched his cheeks hard. We made it to the table but he wouldn’t eat.  He kept clutching and pulling at his cheeks.  Finally, he started to eat his fries but wouldn’t touch his drink. “Nick, want to drink your Coke?”   He let out a big yell. Another couple whipped their heads around staring at us. I smiled and said, “That’s autism, isn’t it nice?” After eating all his fries and chicken tenders he finally took a sip of his drink and let out a burp and a smile. Whew, meltdown avoided. This calls for some ice cream…..

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The sun came out and the temps were warming up close to 50 degrees, so we took a walk in the park.  It was a nice, peaceful ending to a long week.

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It’s not all noise, pranks and chaos with Nick. He does sugar coat things with his smile, hugs, kisses, snuggles and elbow bumps. I’ve come to appreciate his creativity and sense of humor that keeps me on my toes. Hope you enjoyed my installments of autism awareness, Nick style. That’s what is in my noggin this week.

~Teresa

 

 

 

 

 

 

Posted in Autism, Behavior/ ABA, Down syndrome, Fun Side of Nick

Blog #86~Down syndrome and Autism…Boy to Man

Blog #86~ Down syndrome and Autism… Boy to Man

I find it mind blowing that my son turned 20 years old.  What a strange dichotomy.  In many ways he is much like a child.  Nick still watches Thomas the Tank Engine DVD’s and plays with kiddy toys.  He needs prompts with grooming, dressing and navigating throughout the day.

nick and stuart little

He is small in stature, and at first glance you might mistake him for a middle school aged student.  But if you take a closer look, there are signs that he is indeed a young man.  His voice is deep and you can see the visible razor stubble on his chin.  That, and the fact that he likes to sneak a gulp of his Dad’s beer on occasion.  🙂

Bottoms up Nick……

nick drinking beer

At Nick’s conference last week, a poignant question was raised.  What are his barriers for increased independence?  For Nick it is his impulsiveness.  It’s that need to push buttons, in particular those big red buttons. He can never be left alone.

For those of you keeping score at home, the current count is 30 pulls since 3rd grade…….

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In the Down syndrome and autism support groups we all scratch our heads at the antics that our kids come up with.  The reoccurring theme is that impulsiveness.  It’s uncanny, the things they come up with to mess with us.  So often, our stories are similar.  Maybe it’s throwing a shoe out the bus window, coming in like a seagull and swiping something off your plate, opening up the car door while you are driving 50 miles an hour, stripping down buck naked, throwing an iPhone down the toilet, turning the TV volume up to 99, blowing a snot rocket and wiping on the flat screen  or pushing the microwave and phone intercom button repeatedly.

Or dumping an armful of hangers into the washing machine…

hangers in washing machine

Hardy har har Nick, good one!  There are a lot more pictures in Blog #3~Getting Your Goat, located in the April 2012 archives.

Within the framework of the “barrier question” above, it becomes increasingly obvious that these behaviors need to be controlled and contained.  Best case scenario, maybe Nick needs to express his funny side in a more appropriate fashion that is less invasive.  There is no way he could survive in a group home pulling such pranks.

We have two more years in the post-secondary transition program.  On the day of his 22nd birthday the little yellow bus will stop coming to the door.  So, the IEP goals for Nick need to be focused on global independence both in the community and at home.  It’s a bit daunting but then again, so was toilet training him. Somehow we survived that.  I look forward to the IEP next week and seeing how his program can be shaped to foster a more mature adult version of Nick.  That’s what is in my noggin this week!

~Teresa

Posted in Autism, Behavior/ ABA

Blog #77~Autism and Meltdowns

Blog#77~Autism and Meltdowns

I would rather write about anything else than what an autism meltdown looks like (even poop accidents).

poop icon

It’s a difficult subject, personal in nature and exposes a lot of vulnerability.  I am just one of so many dealing with these raging outbursts. My son Nick is 19 years old and has Down syndrome and autism.  So, for all of the warrior moms out there in the battlefield…. This one is for you!

When Nick was in the throes of puberty, his meltdowns were horrific.  He would destroy everything in his path.  His arms slung hard hitting, kicking, biting and drawing blood with his pinching.  These intense battles became so bad and frequent that I had to take action.  I was no longer able to control my own son.  Here is what I did……

Three things we did to get things under control:

1.  Nick was put on medication, Risperdal to help calm him down and be less agitated.

2.  I called an emergency IEP meeting and insisted that the school district’s autism specialist be brought in to help out. We tracked his behavior both at school and home to figure out what might be triggering his anger.  Then we came up with a behavior plan.  You see, every behavior communicates something.  In Nick’s case, he wasn’t being heard.

3.  The autism specialist determined that the staff, Nick and I needed to be properly trained to use the picture exchange system (PECS). The pictures gave Nick a voice that autism had robbed him of.  Finally, he felt in control.  The incidences of the teenage sized temper tantrum quickly diminished.

PECS Communication Book:

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Fast forward to the present….. Nick has been unsettled.  He is expressing it by shoving us away.  It’s like he is saying, “Hey, I am 19 years old and coming into adult age.  Back the F#&K off!”  Nick had two serious meltdowns in the past week.  Each seemed to come out of nowhere.  But there is always something brewing inside. You just have to back track and figure out what might have been the trigger(s) to set him off.

Portrait of an Autism Meltdown: The Scenario, Triggers and Outcome

(Also known as the ABC’s: Antecedent-Behavior-Consequence) Here’s a sample form used to work on a Behavior Support Plan………

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Timeline of Nick’s Meltdown

A=Antecedents:

*Routine is off the past couple of weeks Nick’s Dad had shoulder surgery=added stress around the house.

*Nick has a runny nose and woke up way too early.

*Dinner at Nick’s Aunt & Uncle’s recently purchased home-new environment

*Al pulls into his brother’s driveway and has to back up a few times.  Nick hates it when you pull in and then have back up.  He thinks you aren’t going to stay so he panics, bangs on the window, pinches his cheeks and yells loudly.

*Nick’s bored and no one is paying attention to him.  He looks to stir things up. He sits down on the couch with his iPod, but doesn’t last there long.  He finds my purse and empties the contents it down the stairs. Then, he bonks poor Cali on the head with the can of tennis balls he is stimming on.

Poor Cali, retreats to the kitchen…….

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*Aunt Ali makes Nick’s favorite pasta dish, and has bought his favorite dessert. 🙂

little debbie cakes

*Oh no, I realize that once the Little Debbies are introduced Nick’s going to make a bee line to the shower. That’s his routine.

beelinne pic

*Sure enough, he strips down in the bathroom upstairs. The water doesn’t get as hot as Nick likes…. NOT GOOD, this is going to make him mad.

B=Behavior:

*He shivers and is pissed as I help him towel off.   I hand him his street clothes to put back on.  (I should have brought his pajamas.)  He flung them across the bathroom, then he proceeded to grab the tissue box, toothpaste, magazines, hand towel and hurl them as well. THIS IS IT…….

Point of no return

*I managed to contain him between the toilet and bathtub and shield myself as he lunges at me pinching, bruising and scratching my arms.  I use a towel much like a bullfighter does against a raging bull.  Only I am the one who becomes bloodied, not the bull.

bullfighter pic

*Nick is nearly my size.  There is no possible way to do *CPI Holds (see link below) on him anymore.  It’s more about getting him in a safe place and deflecting his blows.

calm down autistic child

It took 30+ minutes for Nick to de-compress from this meltdown, (most are 10-15 max these days).  I felt raw, defeated and exposed.  Nick started to work through his emotions.  He cursed, hit and pinched himself as if he was replaying the meltdown. My heart breaks a thousand times in these moments.

Consequence:

Eventually Nick showed remorse and said, “sorry”.   That’s when you know he has de-escalated.  He put on his clothes, said our apologies and drove home in silence.

THAT is a portrait of an autism meltdown!

The next morning, I brewed a K-cup and began to dissect what had happened to cause the meltdown.  Nick thrives best in a predictable environment and visual picture schedule that he can follow.

So, I go back to the ABC Functional Behavior form:

A=Antecedent (what happened before)? All the things listed above were building up inside him.

B=Behavior (Nick’s tired, confused, mad at the cold water and no pj’s, he lashes out.)

C=Consequence (After the meltdown, Nick de-escalates and apologizes and we go home.)

I’m still trying to figure out Nick’s world.  In retrospect, I should have increased his med dose before the dinner and made a visual schedule with pictures of their new home.  On the schedule put the following icons on:

“New house”

“Dinner”

“Dessert”

“All Done”

“Car”

“Home”

Or at the very least, just brought his pajamas.  So, I will re-boot and learn from this mistake just as I’ve done before.  Autism and meltdowns can be scary and brutal.  But they can also be prevented if you look ahead to the environment, and plan ahead for anything that might set your child off.

That’s what is in my noggin this week.

~Teresa

*CPI= “Crisis Prevention Institute offers trainings in “Nonviolent Crisis Intervention.”  The program is safe, nonharmful behavior management system designed to help humans service professionals provide the best possible care, welfare, safety and security of disruptive, assaultive and out-of control individuals even during their most violent moments”  For more Information: http://www.crisisprevention.com.

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #70~When Down Syndrome and Autism Intersect

Blog #70~When Down Syndrome and Autism Intersect

 
I just finished reading the Woodbine House book, When Down Syndrome and Autism Intersect, A Guide to DS-ASD for Parents and Professionals. As always, Woodbine House delivers the goods. I only wish this book had been available fifteen years ago when I began to suspect that Nick had something more going on than just Down syndrome.

down syndrome and autism intersect

I started to notice little things at first. Around the age of five Nick started to bang objects and exhibit other odd behaviors. After doing some internet research I stumbled upon a sensory processing disorder checklist. Nick met many of the criteria which led me to believe this was the reason for those behaviors. When we attended the local Down syndrome support group functions I also felt that he didn’t speak as well as his peers.

Nick is more interested in his hand flapping than Santa 🙂
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So, I went to have an evaluation done to see if he might have autism. The results of this indicated that Nick did not have autism as he was highly social and his language deficits were a result of having verbal apraxia of speech. For more information on verbal apraxia of speech I would suggest reading this Woodbine House book, Speaking of Apraxia A Parent’s Guide to Childhood Apraxia of Speech:

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Six years passed and as puberty was full on, Nick’s behavior and meltdowns became more violent and dangerous. The staff at his school struggled along as well. It was nagging at me. I brought up my concerns and the need for an evaluation for autism. The staff informed me that this was not necessary as there was already a primary evaluation of Down syndrome. We decided to have an independent evaluation done at Little Friends Center for Autism, http://www.littlefriendsinc.org. Getting the official diagnosis of autism confirmed my suspicions and gave me a sense of relief and validation. Most importantly, the formal diagnosis allowed for getting the services of the school district’s autism specialist. This specialist helped to identify what triggers set off meltdowns and was able to put a behavior plan in place along with a better picture communication system with proper training for the staff and myself.

Nick age 12, proudly stands on the podium winning the state gold medal in the softball throw at the Special Olympics…

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According to the Kennedy Krieger Institute, http:// www.kennedykrieger.org,  around 10-15 percent of children with Down syndrome also have autism.

For an autism diagnosis there are three areas of development that a person must show significant difficulties:

1. Social Functioning
2. Non-verbal or difficulties with communication
3. Restricted interests and activities

Some of the symptoms and behavior shown with children having Down syndrome and autism are:

 
*Significant lack of social response
*Difficulties with communication and reported loss of verbal and expressive language.
*Repetitive behaviors like hand flapping, spinning or rocking, fixation on inanimate objects (strings, fans, mirrors, water, etc..)
*Sensory issues including the intensified sensitivity or need for more sensory input
*Behavioral challenges including frequent tantrums and physical violence

 
The book, When Down Syndrome and Autism Intersect contains a great deal of information on health issues and gives practical information on tackling the complex world of raising a child with Down syndrome and autism. My best advice is this, if you suspect that a child with Down syndrome has something else going on then run; don’t walk to get a firm diagnosis. There are more services that become available to help with challenging behaviors, communication and learning for our kids. That’s what is in my noggin this week! 🙂
~Teresa

Posted in Autism, Behavior/ ABA, Fun Side of Nick

Blog #68~Hardy Har Har 2

Blog #68~ Hardy Har Har 2

Sometimes I think Nick would rather tease than eat.  Well, unless it’s a big bowl of pasta, then all bets are off.  Having a dual diagnosis of Down syndrome and autism has made it difficult for him to verbalize speech.  It hasn’t stopped him from showing his funny side.  In Blog #39~Hardy Har Har, I explored Nick’s his sense of humor. Check this blog out @https://nickspecialneeds.wordpress.com/2013/01/28/blog-39hardy-har-har-nick/  This week I have some new gems to share.

Silly guy wearing the blue blanket on his head 🙂

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He knows he is going to get a laugh out of me here….

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Plunk, this is funny stuff….

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Ha, good one Nick. Way to drop the lime in the pasta water….

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Uh oh, another dribble from the second floor stairwell…In Blog #3~Getting Your Goat, you can see a lot more of these. Check it out @https://nickspecialneeds.wordpress.com/2012/04/17/blog-3-getting-your-goat/

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I try to stay one step ahead of him but it’s not easy.  His latest trick is to push the spout on the coffee maker and let it the hot, brown stream run over the counter and trickle down the white cabinet drawers leaving a puddle on the floor.  He also has taken to dropping toys, remotes, phones and an assortment of things behind the flat screen TV.  One thing that is helping is to catch him before he commits the act.  I show him this icon quickly before he initiates the problem behavior.  It seems to be helping him to regulate those impulses.

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In addition, I use the happy face icon to catch him being good as often as I can…..

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Like when he is unloading the dishwasher (and wearing my high heels)  hardy, har har Nick…..

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Finding ways for Nick to get attention appropriately also helps keep his behavior in check.  I am always stocking up on fun things for him….

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My friend, Kelli found this cool light up ring.  Nick took a fancy to it….

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I looked over a few minutes later and saw that he had made it a toe ring…. 🙂

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And who doesn’t crack up over a bloody hand….

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Hope you enjoyed the light hearted fare this week.  I feel very blessed that Nick is so happy. Yes, his antics drive us bonkers and wear on our nerves.  But he brings a great light and humor to each day. Hey, its Nick’s world….the rest of us are just trying to keep up.  That’s what is in my noggin this week! 🙂

~Teresa

Posted in Autism, Behavior/ ABA, Education and Special Needs, Feeding, Personal Hygiene, Toileting, Tech Stuff/Apps and Video Based Instruction

Blog #52~ Tech Time

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Blog #52~Tech Time

A few weeks ago at the National Association for Down Syndrome (NADS) Retreat the guest speaker did a presentation on using video based instruction and mobile technologies to support learners with Down syndrome and other developmental disabilities.  Toni Van Laarhoven, an associate professor in the Department of Special and Early Education at Northern Illinois University (NIU) gave us some great information on how to implement it.

Video modeling for can be used for teaching a variety of social, academic, and functional skills.  In the April 2012 archives, Blog #5~Ready, Set, Action, I wrote about how effective these have been in teaching Nick a variety of job skills.  He learned how to unload the dishwasher, load the washing machine and how to use the vacuum cleaner.

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Before video modeling we used social stories.  Basically this is like a script that you want the child to follow.  With Nick also having autism, it helps him to see it in picture form so he can better understand.  Nick has a thing for sneezing right in your face on purpose.  His teacher made this social story, here is part of it…….. aaaaachoooooo 🙂

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These visual supports were effective, but his interest level when reading social stories was nothing compared to when he started watching the video models.

Here are a few ideas  I came up with for video modeling:

Teach a job skill

Teach a fine motor skill (cutting food, buttoning a shirt, pour milk, handwriting)

Teach a gross motor skill (swimming strokes, riding a bike, yoga positions.)

Grooming routines (brushing teeth, washing face, dressing.)

Bedtime routine

Change in routine (picture day at school, new curriculum unit in P.E., new school)

Visit to doctor, dentist, blood draws, and haircuts

Trip to the zoo, baseball game, mall, movie theater

Appropriate leisure activities to do at home (watch a movie, computer/X-Box)

Teach social skills (playing games with peers, turn taking)

It’s best to choose one behavior or skill to work on at a time.  Have the child watch the movie before engaging in the activity on a consistent basis.  For a job skill, many students have a video on their hand held device (iPod) and can follow the prompts as they work.  Ultimately, using video models can foster greater independence.

Shooting the videos can be done using an adult or peer model going through the sequence.  Simple verbal prompts should be provided.  For example, for pouring milk you can script it like this.

  1. Go to cabinet and get a cup.
  2. Go to the refrigerator and get milk.
  3. Open cap and pour milk in cup.
  4. Put cap on milk.
  5. Put milk container back in the refrigerator.

Another way to use video modeling is to make a video resume.  Toni made one of her sister who has significant disabilities.  This video showed in detail her routine.  The narrator pointed out specific details, likes, dislikes that added clarity to how she navigates her day.  This would be extremely helpful for a new staff, teacher, and direct care provider.  A few years ago, Toni’s NIU students put together a video resume of Nick called Project MY VOICE.  Like Toni’s sister, his showed what he did at school, his likes (music, community outings, etc..) and pointed out things that might upset him (saying “no” to him, changes in schedule, etc…)  Nick was very proud to show the video at his IEP meeting that year. 🙂

There tons of programs and apps that are available for assisting persons with special needs.  Here are just a few that have been recommended to me:

*Follow a schedule with Picture Scheduler:

picture schedule app

*iPrompts- Visual support, schedules, picture prompting for autism and special education.

*Artiks Pics-Vocabulary flashcards, memory games

*www.autismspeaks.org/autism-apps

*First Then Visual Schedule:

first then app

*ABA (Applied Behavior Analysis) and educational apps:

fruit app

happy sad app pic

Alphabet Tracing:

alphabet tracing

Sensory Fun, Light Box App:

light box app

Silly Fun, Talking Tom 2 (Nick’s going to love this one. Tom just cut one here, stinky) 🙂

talking tom

The list goes on and on, you get the idea.  There’s an app for just about everything.

Video based instruction, using mobile devices and prompting systems are effective tools in helping our kids navigate their world to become more independent. Put the power in their hands! That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Feeding, Personal Hygiene, Toileting

Blog #51~Pushing My Buttons

Blog #51~Pushing My Buttons

Pushing the microwave and phone intercom buttons, running water faucets full blast, dumping out coffee mugs…. You name it Nick does it. I try to ignore the behavior and not give him any attention which is what he desires.  This tactic isn’t really working.  Now what?  Enter Toni Van Laarhoven, Associate Professor at Northern Illinois University.  She spoke at the NADS Behavior Retreat a few weekends ago.  Before she did her presentation on using video modeling to teach behaviors she spent some time talking about the struggles that we as parents were going through. The NADS (National Down Syndrome Association) retreat families all have children with Down syndrome and autism.  I sat up in my chair, she had my full attention. I began jotting notes in my journal frantically as she spoke.  I am always looking for solutions, she had me at DRO.  

It’s been a long time since my days of taking psychology classes at The University of Texas.

Longhorn logo

I remember the basics but this technique I have never tried with Nick.  What is DRO?  It stands for Differential Reinforcement of Other Behavior, and it is the delivery of reinforcement. This reinforcement procedure is designed to reduce a given behavior by increasing alternative behavior while withholding reinforcement for the unwanted response.

 I did a little research and have to give credit to Toni Van Laarhoven and these two resources: 

Cooper, J.O., Heron, T.E., & Heward, W.L. (2007). Applied Behavior Analysis (Second Edition). Upper Saddle River, NJ: Pearson Education, Inc.

Sulzer-Azaroff, B. & Mayer G.R. (1991). Behavior Analysis for Lasting Change. Belmont, CA: Wadsworth/Thomson

Here is my take on this technique and how I might apply it to help with some of Nick’s behaviors.  DRO is a specific schedule of reinforcement that is used to decrease the rate of behaviors that are inappropriate.  It is time-dependent, so rather than responding to a behavior after the fact you reinforce the time that the child is NOT engaging in the inappropriate behavior. In essence, you catch them being good. 🙂

angel pic

Advantages of using DRO: 

* Decreases inappropriate behaviors rapidly

* Positive approach to change inappropriate behaviors

* Used to reduce a wide variety of behaviors

* Easy to implement

Guidelines for implementing a DRO Program: 

* Define the target behavior.

* Determine highly preferred items or activities to be used as reinforcement.

* Collect baseline data of current behavior, how often does this occur?

* Set initial DRO intervals just below the average period of time that the child  emits the inappropriate behavior. (5, 10, 15 minutes?)

* Explain rules to earn reinforcement.  Child will earn reinforcement if they do not engage in the target behavior during each interval.

*DRO may be more effective when combined reinforcing replacement behaviors.

*Use visual supports (tokens, picture of reward)

*At the end of the time period, provide the child with the reward if the target  behavior was not emitted.

* If the child engages in the target behavior, inform them that there will be no reward at that time.

* Start time period and continue sequence above.

*Implement daily and consistently.

* As the student makes progress, increase the time period.

Here is what I picture with Nick.  The target behavior will be pushing the phone intercom button.  I will do some data keeping on how often he does this.  In addition, I will see what is occurring in the environment that might trigger him doing this and make a note in the behavior journal.  Once a pattern is established I will set the interval schedule.  Next will be determining what motivates Nick.  Normally he is rewarded with a Sprite when he does his work bins well.  However I am going to use a different reward specific to this DRO project.  Nick enjoys watching Funny Cats on You Tube and the laptop is right by the phone.  Right now I am thinking this might work.  I like the idea of doing a visual token system for Nick.  Toni mentioned making a puzzle of the highly preferred item.  For each successful interval you put a piece in the puzzle.  Once the puzzle is filled in then Nick would get his reward  🙂

you tube cat pic

The DRO technique could be used in home and in the classroom as well.  One instance might be a child who interrupts the teacher during classroom instruction. The end result is to have the child learn to exercise more self control.  This may sound like a lot of work.  The data keeping and setting of the interval schedule can be tedious.  Flashback to the toilet training days….. this is when I use to put Nick on the throne every 30 minutes and do a dry pants check.  I also kept data on how often he took in food and drinks. Over time I saw a pattern of two things.  First,  was how long he could stay dry and clean.  Secondly I figured out what amount of time it took him to digest what he ate and drank thus needing to use the bathroom. This is how I habit trained him.  As he matured he was able to self-monitor toileting on his own. Put the time and effort on the front end (so to speak 😉 ) and there will be a payoff.  That’s what is in my noggin this week….. Stay tuned…..

~Teresa 🙂

Posted in Autism, Behavior/ ABA

Blog #50~Up, Down and Somewhere in Between

Blog #50~ Up, Down and Somewhere in Between

Life has its ups and downs like a roller coaster. The highs from a peak adrenaline rush don’t last forever. What goes up must come down. Then there are those periods of in between. Over the weekend we attended the National Down Syndrome Association (NADS) Behavior Retreat. This is unique group of kindred spirits all which have children with Down syndrome and autism. This support group always divulges uncanny stories that are frighteningly similar. Some are on a high, others are on a low and a few are somewhere in between.

The retreat opens with sharing of stories. The first was a success story of a boy the same age as Nick. He is navigating his schedule independently using his iPad and a scheduler app. The next mom had poured out tears last year. At that time her son plopped down outside in a busy parking lot. She physically couldn’t get him to move. We call that the “stop, drop and plop.” This year she said they were in a honeymoon period experiencing much success and growth with their son. Another parent was struggling with many things. Her son was now a one man wrecking crew. He’s on a dumping rampage like Nick.  The only pictures she had were up on the high shelves in her home.  He found a way to hurl objects way up on the shelves and successfully knock down the last remaining picture frames. Why? He likes to stare into the frame because it’s reflective. His sensory need was desperately craving shiny objects. Crafty little guy. 😉

Nick likes reflective objects too…..

photo (112)
The gal next to me was on a high. She had grasped the Holy Grail. Her child was finally potty trained. The group broke out clapping and cheering. This is no easy feat with our kids. Al and I spoke next. Right now we are somewhere in between. Nothing horrible is going on with Nick. Yes, he is still pushing the microwave and phone intercom buttons. The water faucets  run full blast from time to time. He’s still dumping and dropping things. On the flip side, his meltdowns have been minimal and he hasn’t pulled a fire alarm in a while.

Nick’s last alarm pull was at this retreat six months ago, that was #27….

firelite-pull-station
While these things are bad, I don’t see it as unmanageable right now. I know what rock bottom looks like. We hit it hard while he was going through puberty. This ride is wild and often met by hitting a breaking point. We came close. Over the years during these retreats, some families had to come to the realization that the support at home just wasn’t enough. You can see the pain in their eyes. You can tell by the body language as they sit with their arms crossed wound up tight as a ball of yarn. You can feel it as they speak of their hopelessness and guilt with tears flooding their down their faces.

At some point we as parents have to make the difficult decision to put our kids into a group home. Over the years many families expressed their relief of having done so and reported that their child not only adjusted but thrived. It’s a personal decision. I am guessing that when the time and situation is right, you will know it.

Listening to all the stories got me thinking that it’s like that Seinfeld episode with the coffee table book….

Seinfeld coffee table book
George who had no job and living with his parents adopts a new mantra, to do everything the exact opposite. Elaine is up, landing the job at Pendant Publishing but then things come crashing down. Damn those Jujyfruits. 😉

Seinfeld Jujyfruits
Meanwhile, Jerry loses a stand-up gig and five minutes later is asked to perform another one on the same night. This prompts Kramer to call him “*Even-Steven”. This causes Jerry to start noticing how everything always ends up turning out exactly the same for him as originally planned, never losing or gaining. By the end of the episode, Elaine claims that she has “become George,” but Jerry marvels at how things always even out for him: first, Elaine was up and George was down; now, George is up and Elaine is down, but Jerry’s life is exactly the same.

Seinfeld cast
Besides the successes and war stories, the retreat offered some great information. Toni Van Laarhoven, an Associate Professor from Northern Illinois University gave  a fantastic presentation. We learned about using video modeling to teach new skills and behaviors. I can testify this works. Check the April 2012 archives for my story on this in Blog#5~ Ready, Set, Action. Toni also provided some helpful information regarding behavior problems. Stay tuned for more on this in the next two weeks.

In life sometimes you are up, other times down, and sometimes in between. I am okay with being “Jerry” right now. I’ll take even-steven. I think TODAY, most of us would.
tax day
That’s what is in my noggin this week and don’t forget to ask for those tax day specials! AMC (free popcorn), Sonic, Arby’s, Cinnabon and many other businesses are offering some sweet deals today. 🙂

~Teresa
*even- steven: According to Dictionary.com it means exactly equal; also, with nothing due or owed on either side. For example, I’ve paid it all back, so now we’re even-steven. This rhyming phrase is used as an intensive for even. Random house.com states that the noun steuen/steven originally meant ‘a time or place’, but later took on the meaning of ‘a condition, situation, or circumstance’. So the phrases set steven and even-steven both meant ‘settled circumstances; settled accounts’.