Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #227~Ditch the New Year’s Resolutions, Here’s a Better Idea

Blog #227~Ditch the New Year’s Resolutions, Here’s a Better Idea

How many times have you made a new year’s resolution and failed to reach it?

new-year-resolutions-825x549

New Year’s resolutions can be daunting and difficult to keep.  This year, I am changing  my tune.  I’ve adopted a new principle personally and for my son, Nick who is 24 years old, and has a dual diagnosis of Down syndrome and autism.  As a fitness professional for 35 years, my job is to motivate, challenge and inspire my clients.  Being fit and healthy isn’t just about eating right and exercising.  To feel your best, you must take care of the mind, body and spirit collectively.  As a parent of a child with special needs, there are more demands, that can wear on you both physically and emotionally.  It is essential to take care of your physical and mental needs to reduce stress and avoid burning yourself out.

mind body spirit

I was listening to a Sirius XM radio interview with Teddi Mellencamp (yes the daughter of John Mellencamp), who is an accountability coach. She gave a better alternative, instead of making new year’s resolutions.  Teddi suggested that you pick 3 things each day that will take care of you personally, and hold yourself accountable.  Write them down, and try it for just 5 days.  These should be centered around helping you to feel better, both physically and emotionally.  By doing this, you begin to create good habits, that leads to confidence, and ultimately changing your lifestyle.

So, I tried it by writing down 2 things each day (3 seemed too much with my busy schedule).  Here are a few things I did:

*Cleaner eating- Replace Sun Chips with almonds and make a chicken wrap with only avocado and lettuce.

*Relax, stretch and be mindful of breathing to relax and calm the body,

*Bump up home workout weights from 10 to 12 pounds.

*Be mindful of the gratitude you receive throughout the day

*Eat an extra piece of fruit.

*Turn off the TV and listen to music I enjoy.

*Be compassionate, smile at a stranger and do random acts of kindness.

*Drink one less cup of coffee and replace with more water.

*Go upstairs, every time I needed something, instead of waiting until things have accumulated.  (This increased my steps significantly).

*Apply one of the principles of Feng Shui.  De-clutter home and clean 8+ years of dust off the high cabinets to increase the flow of chi energy.

*Pray more throughout the day.

*Shop on the outer edges of the grocery store as much as possible. (This is where the nutrient dense, clean and less processed foods are located).

*Respond, and don’t react with anger.

*Meditate for 10 minutes.

I have to say, there is a feeling of personal accomplishment when you hold yourself accountable, and do just 2 things a day to promote personal health both physically and emotionally.

relax

As a fitness professional, here’s what I suggest on how to start a new fitness program.  Don’t set yourself up for failure. Replace the resolution of going to go to the gym 5 days a week with a more reasonable goal. Change the mindset to, doing some physical activity 3-5 days a week.  If you can’t make it to the gym, or you are too tired, then get out and walk or do some calisthenics for just 10 minutes.  Add an extra minute to each workout.  It will all add up, and you will build confidence and feel less guilty.  Break it down to smaller pieces and you will set yourself up for success! 🙂

This got me thinking that maybe I should apply this principle with my son, Nick who has Down syndrome and autism.  Being a parent, we often feel like we are not doing enough to help our child learn and develop skills.  Blame it on housework, our jobs, time schedules/demands, and just plain exhaustion which leads to feelings of guilt.  So, I am going to just focus on one thing that will help my son be more independent each day.

I started yesterday, by encouraging Nick to use his AAC (Augmentative and Alternative Communication) device.  Nick successfully used it to request breakfast and lunch, along with a few other highly preferred rewards he enjoys.

Today, I will continue to focus on Nick using his AAC device by requesting foods and after dinner getting him to ask to take a shower.  These are little steps, but they can add up and enable my son to realize the power of using his voice, via his talker.  I have to constantly remind myself to be disciplined with not only myself, but with my son.  Ultimately, our goal as parents is to guide our children to be as independent as possible and in the process, help them gain more confidence as individuals.

Saying goodbye to New Year’s resolutions, that are often impossible to keep for 365 days, feels liberating.  Shifting the mindset to smaller goals is more realistic.  Little changes add up to building healthy habits.  It will help you feel better physically and emotionally each day.  Plus, it’s attainable and a more reasonable approach to making positive changes.  Breaking things down into smaller pieces is a better way to have success, and build confidence gradually and consistently.  It also allows you to let go of the feelings of guilt that you aren’t doing enough for yourself and your family. I would love to hear your ideas 2-3 things you might add to improve your mind, body and spirit each day!

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

Posted in Behavior/ ABA, Feeding, Personal Hygiene, Toileting, Recreation/Leisure and Special Needs

Blog #22~ Grooming 101

Blog #22~ Grooming 101

A few weeks ago in Blog #18~A Cut Above, I wrote about the joys ha ha… of giving Nick haircuts along with a few other grooming issues.  I thought this week I would expand with some information on overall grooming and fostering independence in hygiene and dressing routines. While it seems like something we all just do without thinking, it’s not as simple as that.

Well, maybe it is for a cat. Miss Mellie makes it look so easy and peaceful……

So where to start, tooth brushing, bathing, washing face and hands, dressing?  Several years ago, a wise autism specialist once offered this piece of advice.  “Pick one thing on the day you pay your bills each month and that is what you will work on with your child until the next monthly bill cycle.”  This helps you as a parent to focus on one goal without being overwhelmed.  The second *pearl of wisdom I have learned is to make sure you have a block of time where things are relaxed to teach these skills. Mornings are out for us since the bus gets here at 6:30 a.m.  Uh, no are you kidding me, 6:00 a.m. is not going to be a teaching moment.

Let’s start with brushing teeth.  I like use flip up caps on toothpaste as it is easier for Nick to open up on his own.   By the way, why does the toothpaste fall off a toothbrush so easily but it sticks to the sink like glue?  We use a lot of visuals to help Nick navigate his world.  Autism 101, if he can see it, he will understand it.  Here is the step by step sequence we use for brushing teeth.

I found these sequence boards in a software program called   “Functional Living Skills and Behavioral Rules.”  There are tons of visual prompts in this program!

This software program has step sheets for everything from showering to feminine hygiene steps.  In addition, it offers daily living schedules, community skills, and behavioral rules.  Another great resource is a book by Mary Wrobel called “Taking Care of Myself.”  This is a must-have for a parent with a special needs child. For showering the steps are posted on the outside of the shower door facing in for Nick….

I wrote the steps on the back. To prompt I slide my fingers to each the picture while Nick is showering….

Here are a few other visual ideas for shower and shaving …..

Over the years I have also used a lot of modeling of these tasks along with the visuals.  During Nick’s shower, I often pretend like I am washing too. Why, because Nick can get lost in “receptive words”.   Too much verbal cues get him caught up in the shuffle.  Wiki.answers.com explains it as this: “Receptive language”  is the comprehension of language – listening and understanding what is communicated. Another way to view it is as the receiving aspect of language. (Sometimes, reading is included when referring to receptive language, but some people use the term for spoken communication only.) It involves being attentive to what is said, the ability to comprehend the message, the speed of processing the message and concentrating on the message. Receptive language includes understanding figurative language, as well as literal language. Receptive language includes being able to follow a series of commands.”  So for Nick, it helps to use fewer words and focus on the visuals and modeling the desired behavior. For example rather than say, “Nick you need to get the shampoo and wash your hair.” I would either point to the shampoo bottle and mimic the action or simply say “Nick, wash hair.”  It is succinct and he gets it.

Time for me to get clean and slicked up!

The goal is to work to diminish the cues whether they are verbal, modeling or visuals. This idea is known as “Least Restrictive Prompting.”  Teaching a behavior starts with putting your hand over the child’s hand to show them how to do it.  Then literally you begin to fade back.  From there your hand is over the child’s wrist, then elbow, upper mid-arm, shoulder and finally letting go and being within close proximity.  The end result is to help him foster independence in all of these tasks.  To date, Nick is able to get his grooming bin out of the closet and follow a routine with success.  He also has hygiene built into his curriculum at school.

Here is Nick’s grooming bin. He also uses body spray but that is kept under the sink that has a childproof lock since he likes to take it and spray all over the place including right into your eyeballs (see more of these shenanigans in blog #10~ Nano Second.)

Last week in Blog #21, I mentioned the word “buck naked.” Nick has absolutely no problem undressing.  However getting dressed can be tricky.  He often puts his pants and shirts on backward still to this day.  By laying the clothes out a certain way, Nick is more easily able to get this done correctly. Note the shirt is laid out backwards so he can grab it from behind and pull it over his head.  The pants are laid out over his feet straight up so he can put one leg in at a time….

 Voila, it works! 🙂

Here is another idea.  Put a smiley face on with painters tape on the tag area and cue this to be in the back.

Bottom line is this…. As Nick’s mom, the biggest gift I can give my son besides love is to teach him to become independent in all of these tasks.  He will gain confidence, pride and hopefully a spot in a group home someday.  Not every day goes smoothly.   Sometimes we just have to get out the door, and if Nick is moving slowly I don’t force him to do it on his own. Pushing Nick too hard can lead to frustration on both our parts so I pick my battles.  Easy as a cat taking a bath, no but it can be done.  That’s what is in my noggin this week.  I hope the Grooming 101 tutorial was helpful and maybe enlightening.  Make it a good one and until next Monday and here’s to looking slick and sharp.  After all, as the ZZ Top says….”Every girl’s crazy about a sharp dressed man….”

~Teresa

*Pearl of wisdom according to wiki.answers.com says that “The biggest connection I can see between a pearl and wisdom is they both take a long time to develop. Also, both a pearl and wisdom seem like small objects but are both very valuable, and they develop from grit

Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Feeding, Personal Hygiene, Toileting, Speech and Occupational Therapy

Blog #18~ A Cut Above The Rest

Blog #18~ A Cut Above The Rest

Haircuts are no fun with Nick, period.

I can still remember the first time they started to bother him.  It was right before we moved to California in 1998.  He was around four years old. I took him in on a Sunday morning hoping the churchgoers would be worshipping and the salon would be empty.  We walked in and there was only one lady who sat relaxed in her chair and getting a perm.  I sat him on my lap and as soon as the scissors came out, he began squirming and yelling.  Next thing you know he set off the car remote I had put in my pocket.  I couldn’t get out of the salon quick enough. I slapped a twenty down on the counter and got the hell out of there.  That was one of the last professional haircuts he ever got.

Nick’s first haircut in 1996, this one went well……

Nick the early years. His hair was so soft and silky…..

It got to the point where we decided to get some clippers and just give him a home haircut.  Nick’s new look became the buzz cut.

The older he got, the stronger Nick became. Nick has Down syndrome and autism.  His behaviors became more challenging as he got older. He started putting up a big fight.  In fact, if you ever wondered why his tooth is chipped it was from him flailing his body and hitting his face on the floor during a haircut.  Al and I began to dread them as much as Nick did.  Bribes, oh I mean rewards such as a Sprite and a shower didn’t seem to help either.  He began to pitch even bigger fits and we had no choice but to pin him down.  The worst haircut was sitting on the floor of the bathroom with my legs around him and my arms holding his in a basket hold. We were covered with sweat and his fallen hair felt like needles jabbing at our skin. Nick flailed and then peed all over the floor.  We sat there in a puddle of warm urine and fallen hair sticking to us.  Worst yet, we were only half done.  Picture this,  a buzz cut front in the front and mullet in the back.

As I mentioned earlier the bigger the fight, the more traumatized he became (and the longer it took him to de-escalate).  We would finish these sessions and he would be shaking, red-faced with tears streaming down his cheeks.  It broke my heart. 😦

As Nick got into his teen years, I worried that we were going to have to go to extreme measures.  Then, there was another area of hair removal to be addressed. He was starting to grow facial hair, nooooooooooo!

Now it was already impossible to give him haircuts and clipping his toenails was no walk in the park either.  It’s much easier after being in the hot tub or a long shower so that the nails are a little bit supple.  How could we possibly get a razor to his face.  Luckily I had a good team of teachers and aides in high school who offered both visual supports and tips to tackle this next hurdle.

I have to give a lot of credit to Rob Trefil, Nick’s aide in high school.  He was able to get Nick to tolerate an electric razor and actually get in there at his chin and mustache area.  We found the roller top razor worked much better than the rotary one.  Introduce shaving a little bit at a time.  Then, increase the time with each session and lots of praise.  Having a male to model this helps a lot.

Mr. T rocks…..

Big guy shaving……

Last weekend, we geared up for another haircut session.  I was worried because we had waited too long and his mop was out of control.  It was going to be like cutting the lawn two weeks too late.

Pre-haircut Nick, it’s a bit scrappy? 

To my surprise, Nick did outstanding.  In fact, it was the easiest haircut we had ever given him. He didn’t cry or get too upset at all. Hallelujah 🙂

Post haircut Nick….. *A cut above the rest!

I think a couple of things have happened to tone down the level of anxiety and how he tolerates haircuts.  Puberty has passed along with the severe aggressive meltdowns.  I see a maturity about Nick now that he is a young adult.  As parents, we have learned more about behavior management, and use visuals to guide him through the process.  We also figured out that it’s easier to cut his hair first thing in the morning before being bombarded with sensory overload.  Finally, investing in a good pair of clippers makes the cuts go smoother. Nick even helps some with it.  I am so glad the days of holding him down in a basket hold and shearing him are gone.  That is what’s in my noggin, until next Monday may every day be a good hair day!

~Teresa 🙂

*A cut above the rest…. It is originated from the saying “you and I are cut from the same cloth” (being the fabric of life) and that the cloth, from which you were cut… was or superior quality.

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Tech Stuff/Apps and Video Based Instruction

Blog #5 Ready, Set, Action!

“Wash… wash…wash,” I hesitated going into the other room in fear of what Nick might be doing.  Would it be my fitness shoes in the sink under the faucets running full blast yet again?  To my surprise, I went into the laundry room to witness him taking the dirty clothes off floor and one by one plunking them into the washing machine and with each one saying the word wash!  It hasn’t just been the laundry either. For the past year, he has step up in other household chores.  Trying to get his brother, Hank to unload the dishwasher was like trying to pull teeth.  But Nick completely enjoys his role that he took over since his brother left for college last fall.  Everything has its place and his careful eye has taken note over the years.  He proudly puts every cup, plate, pot and pan along with the stemware carefully in the cupboards.

A few months ago I packed away the last of the Christmas ornaments and decorations and pulled out the vacuum to clean up all of the needles that had fallen on the carpet. I plugged the cord in and turned around to see Nick with his hand on the handle.  He was ready to take it on!  Much to my surprise, he not only navigated it but held the cord appropriately off to the side and did a nice job running the vacuum across the carpet.  I knew he was doing this for his school job at the elder care home but had no idea how well he was performing.

I have to give all of the credit to the staff at his high school.  Mrs. W brought in Northern Illinois University (NIU) to do a study that was done on six of her students last year.  The abstract was about maintaining vocational skills of individuals with autism and developmental disabilities through video modeling.  Research has shown that using video modeling helps to promote independent work-related behaviors and decrease the reliance on staff.  Video based supports often result in fostering independence and generalization of job related skills.  This means there is less reliance on job coaches and co-workers all for which are critical for sustaining competitive employment.  It is like a script in that breaks down the tasks that need to be performed.  These short videos are narrated in the background with short verbal prompts.  Nick watched them every day for two weeks and then each time before he was to perform a particular task. In the case of the NIU study the videos were for loading the dishwasher and washing machine.  What I noticed immediately is that Nick enjoyed watching them over and over again.  They are much more effective than any task strip that he has always used in the past. Here is an example of a task strip:

For me the proof is in the pudding*.  I noticed a significant increase in Nick initiative and accuracy in helping out around the house.  The videos did in fact increase his generalization to doing other chores besides these two.

While the jobs are pretty basic for most people, for Nick they mark a milestone.  His goals are no longer academic in nature for the most part they are all functional.  Functional goals are non-academic and generally understood to refer to skills used in the context of routine activities and daily living. Anything he can do independently gives him not only a better chance at getting a job upon graduation but also a placement into a group home someday.   Right now, he also has many other jobs at school including shredding, washing windows, loading the dishwasher, recycling and washing clothes for the PE department.  This week we have his annual IEP meeting to discuss his progress and goals for his senior year of high school.  As I look back it is amazing to see the progress he has made given his disabilities.  At this rate, I am going to be able to give him the reigns around the house while I sit back on the couch, prop my feet up and eat bon bons!  That is what’s in my noggin this week.

*Origin of Proof is in the Pudding

Proof in this case means “ultimate test.” To “prove” used to mean to test, a meaning which survives in a limited number of usages. This is one: it literally means you can show me a wonderful recipe, and tell me about your fine ingredients, but ultimately, the test is in the thing itself, the actual results.