Posted in Augmentative and Alternative Communication (AAC), Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Uncategorized

Blog #155~More Than Just Down Syndrome

Blog #155~More Than Just Down Syndrome

There came a point when I felt like we didn’t fit in with the Down syndrome support groups. We stopped going to holiday parties, play groups and other fundraising events. My son, Nick lacked speech, displayed unusual and repetitive behaviors (like tapping and shaking objects along with making loud noises).  His speech delays resulted in frustration on his part, which led to behavior problems and violent meltdowns.  It became apparent that this was more than just Down syndrome, when he hit puberty.

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We approached the school team about these outbursts, where he would throw things, trash the classroom along with pinching and scratching staff.  It didn’t seem like any of us (both at school and home), could get a handle these problems.  The school was reluctant about getting an autism evaluation done, as they stated; “We have a primary diagnosis of Down syndrome we can work from”.  Rather than push the matter, we chose to have an independent evaluation done and paid for it (with some help from our private insurance), out of pocket.

It was money well spent. Nick got the diagnosis of Down syndrome and autism (DS-ASD).  If you suspect that your child’s behaviors are more than just Down syndrome, I would strongly suggest getting a medical evaluation done by a clinician.  The diagnosis of autism, was like getting the magic key, that unlocked the door to more services for our son. These services were provided in part, by the school district and outside agencies:

*Behavior intervention by the school district, autism specialist resulting in a Functional Behavior Analysis (FBA).  This lead to the development of a behavior plan, specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns.

*Speech support and training using a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.

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*Toilet Training and workshops for home support.

*Additional State Funding (In-Home Family Support Child Based Waiver) which funds respite care, behavior support and safety/ health equipment to support the child at home.

*Federal Funding (Supplemental Security Income-SSI)

The formal, dual diagnosis of Down syndrome and autism (DS/ASD), helped professionals, family and friends get a better understanding of Nick’s behaviors.  By getting access to these additional supports, we were able to change the strategies needed to help Nick navigate his world.  His communication improved, allowing him to feel appreciated, understood and less frustrated.  As a family, we felt better assisted with the autism training and having respite staff take some of the burden off us.

If you would like more information on dual diagnosis of Down syndrome and autism check out these resources:

*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals:

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*The Kennedy Krieger Institute- https://www.kennedykrieger.org

*Down Syndrome Association (UK)- http://www.downs-syndrome.org.uk/for-families-and-careres/dual-diagnosis/

*National Association for Down Syndrome (NADS)http://www.nads.org/resources/down-syndrome-and-autism/

In addition, there are many support groups on Facebook when you type in Down syndrome and autism in the search engine, (including my Facebook page- Down Syndrome With A Slice Of Autism)For behavior support, the Facebook page-Autism Discussion Page (Bill Nason).

The challenges of having a child with Down syndrome and autism are unique.  So many parents say that they no longer fit in with the Down syndrome support groups and can’t relate to the autism groups either; they feel isolated.  You as the parent, know your child best.  If you suspect that your child has more than just Down syndrome, take action to get a clinical, medical evaluation and find the additional support to help your child.

That’s what is in my noggin this week.

~Teresa

Follow Nick:

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Posted in Autism, Behavior/ ABA, Down syndrome

Blog #122~Parent Stress and Autism

Blog #122~ Parent Stress and Autism

Research has clearly shown that mothers of children with autism experience more stress, depression and poorer health than is typical of mothers in general. Autism Research Review (ARRI) reports this editorial, “Parental Stress in Autism Spectrum Disorders: In a survey of 219 parents of children with autism, Sharpley, et al. (1997), found that more than 80% reported sometimes being “stretched beyond their limits,” with mothers reporting higher stress levels than fathers.   The authors commented that the three most stressful factors are “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.”

I know of this stress too well. My son, Nick is 21 years old and has Down syndrome and autism. His impulsivity is at an all-time high. In the 5 minutes I stepped out to roll the garbage bins to the curb, he cleared out a desk drawer and threw the contents all over place. A few days before, he was up at 4am and proceeded to take two bottles of salad dressing and dump them all over the kitchen and laundry room floors.

At least he put the empty bottles in the recycle bin 🙂

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According to an article written in Disability Scoop (www.disabilityscoop.com):

“Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.

Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.

Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.

autism war girl

Now, I would never compare my level of stress to that of a combat soldier. But I do have to remain on point to keep up with Nick. I must jump out of my skin dozens of times a day when he pushes the ADT keypad, microwave, garbage disposal, and phone intercom buttons, runs upstairs to run the faucets full blast, or empties a full basket of folded laundry and the basket off the second floor.  Mix in sleep deprivation and dodging potential meltdowns situations, topped with a constant barrage of stimming sounds all of which send tension levels skyrocketing.

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The stress of parenting a child with autism is high for many reasons. Parents cope with grief, worries about the future, struggling to find resources and support for their child on top of handling the behavior and communication issues associated with having autism.

A child with autism may display unpredictable and disruptive behaviors have meltdowns that can be of danger to themselves and others and have trouble sleeping through the night. Deficits in speech and communication can contribute to behavior problems as well. In addition, parents may be dealing with seizure disorders related to autism.

A child’s autism diagnosis affects every member of the family in different ways. Parents must now place their primary focus on helping their child with autism. This may put pressure on their marriage, other children, work, finances, and personal relationships and responsibilities. Much of the focus shifts to finding resources and spending money towards treatment and interventions for their child. These needs can complicate family relationships, especially with siblings.

So what coping mechanisms help a parent dealing with anxiety and drained of energy?

*Get involved with support groups locally and online

*Obtain respite care and apply for funding for supportive services.

*Get your child/young adult into programs and social groups specifically tailored to autism.

*Carve out time to enjoy leisure activities like exercise, massage, meditation and self-relaxation techniques.

These can go a long way towards improving mental health and reduce the strain caused daily. While I try and do most of things, there are some days that push me close to the edge. Ask any parent raising a child with autism and they will tell you that some days you just can’t combat the stress.  That’s what is in my noggin (and heart) this week.

~Teresa

 

Posted in Autism, Behavior/ ABA, Down syndrome

Autism and Meltdowns

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Autism and Meltdowns

April is Autism Awareness Month.  This week I want to focus on autism and meltdowns.  Here is a not so pretty portrait of one of Nick’s meltdowns that I have deconstructed for you.  Nick at the time was 19 years old.  He has Down syndrome and autism.  This will give you an idea of the triggers and behaviors that can occur during a meltdown.  It will also show you what I learned to try and prevent this in the future.

Click here to read @ https://nickspecialneeds.wordpress.com/2013/12/09/blog-77autism-and-meltdowns/

That’s what is in my noggin this week.  Thank you for reading and sharing the reality of autism.

~Teresa

 

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #112~Regression of Behaviors

 

Blog #112 Regression of Behaviors

Christmas 2014 was anything but merry.  The swimsuits, flip flops, suntan lotion and pool toys sat in a pile on the chasse in my bedroom.  We never made it to the Florida Keys for our vacation.  A member of our extended family came down with pneumonia and then a snowball effect of more health problems that included a 12 day stay in the hospital.  Nick wasn’t sure what to make of things.  He is 20 years old and has Down syndrome and autism.  All he saw was his Dad or me taking off all day on hospital visits which were an hour away.  Nick picked up on the fact that something was very wrong.  He was sad and angry and missed being with the extended family.  We spent that two week break unsure of the outcome and shooting from the hip.  In 20 years of raising Nick, I have NEVER seen such a spike in regressive behaviors.

When daily routines are interrupted a child with autism can feel anxious and behaviors regress.  Strict routines, normalized school or work schedules without any unexpected occurrences enable a child with autism to progress best.  However, because the holidays are busy, stressful and filled with the hustle and bustle of foods, gifts, and family; a parent can expect to see behavioral changes.

Back to Nick and those behaviors that spiked, which included the following:

*Increased stimming with objects and louder vocal stimming

*Pushing microwave fan, phone intercom and now house alarm system much more

*Throwing objects and dumping things like a one man wrecking crew.

*Spitting and rubbing snot on flat screen TV, windows, on our clothing.

*Squirting liquid soap in his eyes, rubbing lotion all over himself

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*Multiple, violent meltdowns

*Peeing his pants several times

And to top it off, I left a bottle of Febreeze out by accident………Oh nooooooo!

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FYI, Febreeze and a flat screen TV don’t mix well.  So, we had to purchase a new one……..

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By the way if you Google search “Febreeze on a flat screen TV” there are several entries of other kids doing this.  Nice to know we’re not alone. 🙂

I reported all of this in the school/home communication book.  The school staff wrote back that Nick was definitely not himself. He was trying to pull fire alarms, pinching his cheeks hard as well as a staff member.  To make matters worse, just as Nick was back in his school routine we had two snow days.  On top of that, the kids were off two more for the end of semester and MLK Day.  Oh, and there was a full moon over the holiday break.

autism and full moon

The house is quiet now, and I can focus on writing again. Yesterday, I did a little research on regression of behaviors and holiday breaks.  As I reflect on Christmas 2014, a couple of things stand out.  First of all, Nick’s behavior was magnified because his parents emotional fatigue and lack of emotional availability.  For over two weeks we were back and forth at the hospital.  Nick picked up on the stress.  Secondly, as a family we should have communicated in private about medical updates.  I think back on one particular day.  As I briefed Al on the hospital visit, Nick came over crying and wanted a hug. I had to remind myself that he understands much more of what we are talking about.  He also picks up on the negative vibes of conversations. Finally, one tip I read in my research was so obvious.  But when you are in the thick of things it can be overlooked.  That is, don’t let your kids be aimless.  It’s essential to find ways for them to occupy your child.  When kids are on a school break, they have less structure in their day. Bottom line, they’re going to get into more trouble and conflict because they have the opportunity to do so.

While there was no kayaking, bike rides, beach and pool time or key lime pie over Christmas we did make it through.  Things are slowly on the mend. The cousin’s presents and white elephant gifts are tucked away for now.  The Hormel Cure 81 Ham sits in the refrigerator awaiting a belated Christmas celebration at a later date. The gift of Christmas 2014 is being reminded of how precious life is and how quickly it can be taken away.  In addition, I have a new perspective of how important it is to respect Nick’s needs when there is a school holiday break. That’s what is in my noggin this week.

~Teresa

 

Posted in Autism, Behavior/ ABA, Down syndrome, Speech and Occupational Therapy

Re-Blog~One of My Favorites

Re-Post~ One of My Favorite Blogs

No school today, it’s “Building Articulation Day” (whatever that is).  I was going to try and write but Nick is on a mission to drive me bonkers this morning.  So I decided to re-post one of my favorite blogs.  You will get a real sense of Nick’s world living with Down syndrome and autism.

Here’s a hint 🙂 ………. Splat!

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That wasn’t part of the recipe, Nick…….. Poor Woody

 

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Now that I have your curiosity, see what else Nick has done and what we do about it @https://nickspecialneeds.wordpress.com/2012/04/17/blog-3-getting-your-goat/

Hope you enjoyed 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, 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?

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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.

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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.

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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. poop icon

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.

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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).

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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…….

IMG01 (2)

*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.