Category: Recreation/Leisure and Special Needs

Posted in Autism, Down syndrome, Fun Side of Nick, Recreation/Leisure and Special Needs

Blog #96~ Best Buddies Program

Posted on by Teresa Unnerstall

Blog #96~ Best Buddies Program

Spring is in the air!  I scrolled the Facebook wall over the weekend admiring all the beautiful gals dolled up in their prom dresses and the young men looking so handsome in tuxedos.  It’s a rite of passage for high school students, but one that my son Nick never had a chance to experience.  Nick has Down syndrome and autism and the prom just wasn’t in the cards for him.  But enter this awesome program called *Best Buddies. 

Students like Nick who have intellectual and developmental disabilities are often isolated and left out of traditional school activities.  That’s where the Best Buddies program comes in.

“The Best Buddies program fosters one-to-one friendships between students with and without intellectual and developmental disabilities (IDD).  Best Buddies helps to create an inclusive school climate breaking thru social barriers at an important time in a young person’s life.  This non-profit organization is dedicated to establishing a global volunteer movement that creates one-to-one friendships, integrated employment and leadership for people with IDD.  Founded in 1989 by Anthony K. Shriver, Best Buddies has grown internationally from one school chapter to 1,700 middle schools, high schools and college chapters worldwide. Best Buddies has eight formal programs impacting 800,000 individuals both with and without intellectual and developmental disabilities worldwide.”

Best-Buddies-logo

How did Best Buddies impact Nick’s high school experience?  Because of Best Buddies, Nick was able to enjoy a wide variety of extra-curricular activities. Each month the group participated in meetings, community volunteering, parties, and social events such as bowling, going to the movies, out to eat and to local parks.  In addition, the group hosted two dances a year.

Nick volunteering at a Knights of Columbus  fundraiser……

Knights of Columbus

Nick heading to the Best Buddies Spring Dance……

best buddies dance

Nick looked forward to these events and being paired up with his peer partners.  I am very grateful for these students who volunteered their time to the Best Buddies program. Nick had a special connection with each of his peer partners. This program truly enriched his high school experience.  That’s what is in my noggin this week.

~Teresa 🙂

For more information on Best Buddies: http://www.bestbuddies.org

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #85~ 10 Great Special Needs Resources

Posted on by Teresa Unnerstall

Blog #85~ 10 Great Special Needs Resources

Last week I targeted some links specific topics related to Down syndrome and autism.  I have a few more that relate to a variety of areas related to the special needs population.  You can click right on these links and check them out:

www.wrightslaw.com  Comprehensive information Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

www.woodbinehouse.com  Publishes book for parents, children, teachers and professionals related to special needs.

www.specialreads.com Special Reads for Special Needs Publishing was founded by Natalie Hale in 2000 to answer a need for effective, entertaining reading materials for learners with Down syndrome, Autism, and other developmental delays.

www.hopefulparents.org  Grassroot support for parents of kids with all types of special needs.

www.supportforspecialneeds.com  A community that offers a chance to exchange wisdom and ideas among one of the most powerful group of people we know.

www.leslie4kids.wordpress.com   Comprehensive information on Childhood Apraxia and Speech, parenting and child development.

www.specialsparkle.com   Beautiful jewelry designed and made by a 21 year old young lady who has Down syndrome.

www.downsdesings.com Downs Designs provides a stylish clothing line with proper fitting for unique body types associated with having Down syndrome which is easy to get on and off.

www.hammertravel.org  Offers a variety of travel opportunities for individuals with developmental disabilities

www.nickspecialneeds.wordpress.com   This site which provides information on a variety of special needs topics.  Much of the information specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

Hope you find these additional resources for special needs helpful. That’s what is in my noggin this week. More about Nick’s world next Monday, stay tuned…….

~Teresa 🙂

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #84~ Resource Links Related to Down syndrome and Autism

Posted on by Teresa Unnerstall

Blog #84~ Resource Links Related to Down syndrome and Autism

Today is President’s Day, so there is no school.  My ability to focus and write is hindered by interruptions from Nick who is making loud mooing noises, pushing the fan button on the microwave, dropping things behind the TV and watching “The Other Guys” while tapping a can of tennis balls against his mouth.  Yes, that’s a slice of  Down syndrome and autism here this morning………

Nick tennis balls

So this week I’ve included my favorite resource links related to Down syndrome and autism:

Down syndrome links:

DSAwarenessMagnet

www.ndss.org  The National Down Syndrome Society is the national advocate for the value, acceptance and inclusion of people with Down syndrome.

www.ndsccenter.org  The country’s oldest national organization for people with Down syndrome, their families and the professionals who work with them.

www.nads.org   NADS is the National Association for Down syndrome and a solid support group in the Chicago area.  There is also more links for dual diagnosis of Down syndrome and autism here (including a complete list with signs and symptoms for parents wondering if their child has more than just Down syndrome). 

www.gigiplayhouse.org   Down syndrome Awareness Centers all over the Midwest and expanding to New York, NY and Mexico. These centers provide play, fitness and social groups.

www.noahsdad.com   This site is invaluable for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused.  It is one of my favorite websites.

www.futureofdowns.com   Run by parents of children with Down’s syndrome.  Covers a wide range of topics regarding babies and children with Down’s syndrome, pregnant and in need of advice on screening and tests or have just received a positive diagnosis following an amnio or CVS.

Autism Links:

autism ribbon

www.facebook.com/autismdiscussionpage  This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This is one of my favorite links related to autism.

www.autismspeaks.org  Autism Speaks provides information and advocacy and good general information and links.

www.autism-society.org  The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.

www.tacanow.org  Talk About Curing Autism and has a ton of links and articles along with coffee groups.

www.brianraymondking.com  Brian King teaches his proven methods to individuals and their parents across the country in a private one-on-one format using the latest technology. He  writes a variety of articles, is an author, speaker and trainer  for schools, parents and support groups.

www.bridges4kids.org  Great resources for special needs families. One of my favorite go to sites.

www.myautismteam.com Parents share daily trials, triumphs, questions and recommendations

www.mayer-johnson.com  Boardmaker software for assistive technology/AAC devices

www.teeach.com  Information on TEEACH materials

www.pottytrainingsolutions.com Gathers the most common problems and their solutions to help take the stress out of this major milestone.

www.easterseals.com Easter Seals offers programs, training and equipment for families.

www.specialedadvocacy.org  Advocacy site for parents and teachers

Down syndrome and autism links:

down syndrome and autism intersect

www.nickspecialneeds.com My site which provides information on topics specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

www.ds-asd-connection.org  Offers good information related to a dual diagnosis of Down syndrome and autism.

www.theupsideofdowns.org  Provides support, advocacy and information specific to Down syndrome and autism.

In addition, let me add that there are several Facebook groups directly related to Down syndrome and autism.  These groups are a safe place to share information, ask questions, and share the crazy things that our kids with a dual diagnosis do.  No one in these FB groups would  bat an eye if you posted a picture like this……… (In fact they would hit the like button and add in their own pictures in)…….

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There is help out there right at your finger tips.  Let me know if you have any more to add in.  Thank you for reading and sharing my blog. Now, it’s time to gather up the contents of my purse that Nick decided to dump all over the living room floor.  That’s what is in my noggin this week! 🙂

~Teresa

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #66~Taking the Leap to a Support Group

Posted on by Teresa Unnerstall

Blog #66~Taking the Leap to a Support Group

“I can’t make it there.  I have two boys that are 19 months apart under the age of two.”

“I have it under control.”

“We are okay.  There is no need to reach out to the local Down syndrome support group.”

“I have no energy to get out in the evening to make it to a meeting.”

Those are some of the excuses I have used.  It’s hard to take the leap to a support group.  Over the years friends and teachers have offered names and phone numbers of other parents whose children had Down syndrome.  I found it difficult to make those cold calls as well.  It’s not easy to open up and be vulnerable around people you don’t know.  Every parent handles the diagnosis of a child’s disability in their own way.

Eventually I did reach out to the local Down syndrome support group.  What I found was a community of individuals who had been on their own roller coaster of emotions.  They had dealt with uncertainty and doubt.  They had experienced anger, fear, worry, sorrow and guilt.  These parents offered encouragement and reassurance.  In addition, support groups can provide a forum for sharing feelings and concerns as well as providing information, advocacy and resources available.  See more information at: http://www.ndss.org/Resources/New-Expectant-Parents/Finding-Support/#sthash.dTRJb4bF.dpuf.

When we moved out to the east bay area outside San Francisco we didn’t know anyone.  The Down Syndrome Connection: http://www.dsconnection.org  provided resources, after school classes, social events and an invaluable kinship.

5 Year old Nick with his buddy playing in the Challenger Baseball League….

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Nick at the Down Syndrome Connection Picnic 🙂

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Before we relocated to the Chicago area twelve years ago, the local support group called National Down Syndrome Association, NADS: http:// www.nads.org,  provided a list of parents that lived in the area which we were planning to look for a home.  These parents were so open to answer my questions about school districts and gave me emotional support even before the moving truck had pulled up to our house.  NADS continues to provide services and has been instrumental in making a difference with Nick having the second diagnosis of autism.  Within NADS, there is also a sub-group called “Down syndrome and More,” which holds retreats for families dealing with a second diagnosis.

Nick at the NADS Retreat….. 🙂

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Music Therapy at the NADS Retreat…..

Nick beatnick

These days there are multitudes of online support groups and Facebook pages to reach out to.  There are several Facebook groups specific to Down syndrome and autism.  Be sure and check out my resource page for more.  As a parent I have gone through phases where I thought I had things under control.  When Nick’s body was raging with hormones during puberty he had massive meltdowns.  After talking to a few parents whose children had Down syndrome also had autism, I realized the need to get help.  I also quit being ashamed that I was a bad parent that couldn’t control my child.  By reaching out to the support groups for assistance, I found out that I was not alone.  It has made all the difference.

Help is out there, sometimes you just have to take a breath and make the leap.  That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #54~Mom Helpline

Posted on by Teresa Unnerstall

Blog #54~Mom Helpline

What did I want for Mother’s Day?  ……………………. Just the sound of crickets.…..

I applaud the moms who enjoy breakfast in bed served by their kids.  I am not there anymore.  Really all I want is a little peace.  For me, it is having the luxury to take some time to do simple errands. Not rushing at a mad pace. It’s a gift just knowing that someone is watching Nick so I don’t have to bust my ass to get home.   And so I did.  I took my time after teaching two spin classes. I drove out of work slowly taking a chill pace towards Oswego.  I  stopped off at Ulta, Kohls, Target.  Oh how I love you three amigos!  Ladies, you are with me here, right? 🙂

So I got my wish, to breathe, stretch my arms out and enjoy doing what I like.  I also received a nice handmade gift from Nick.

pinecone birdfeeder

It lasted less than a day hanging on the shepherds hook.  A menacing squirrel plucked it off and darted across the yard holding it in his mouth.  Al got my favorites,  Yankee Candles and a new fountain for the deck.  That’s how I get my Zen on.

zen

While Nick showers me with little kisses, his older brother is more understated. Hank quietly posted a message on Facebook, “Happy Mother’s Day, Madre!  You’re the best.”

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Later he emerged out of the shower clean shaven and said, “This is your mother’s day gift.”  He knows exactly how to win his Madre’s heart.

While I was out driving yesterday and I pondered on what to write about for this week.  How is being a mom of a child with special needs different?  The images of my all my fellow warrior moms came to mind.  The path we were given is worn with sleeplessness that extends for years.  The basic milestones like eating solid foods, walking, talking, and potty training take longer to reach.  Some of these may never be met. The ones that do get met are sweet and savory.  Warrior moms become experts on their child’s diagnosis and IEP’s (Individualized Education Plans.)  They learn a whole new vocabulary of words from doctors, educators, speech, occupational and physical therapists.  They juggle schedules to all of these therapies and carve out time to attend conferences and seminars to learn more about how to improve the quality of life for their child. They become advocates for their child and help others who follow behind them.  Those with children who have behavior problems have to shift gears during a mid laundry fold and clean up a splatter or cut a meltdown off at the pass.

This is just one of many things Nick has dumped out.  For the full list check out Blog #3~Getting Your Goat, located in the April 2012 Archives!

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Sometimes the meltdowns just happen and the warrior mom has to maintain patience while their child is hitting, biting, pinching, kicking and destroying everything in their path.  It’s not all doom and gloom.  Having a son like Nick who has Down syndrome and autism can also bring sweetness, innocence and unconditional love.  That is what keeps me fueled as I take a breath and get ready for another day.

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What can you do to help a mom with a child who has special needs?  It means a great deal when I get a message, text or card.  Knowing that someone is thinking about you can really make a person’s day.  Offer to babysit or help a mom find respite care. “The Care.Com Team” provides a list of caregivers who have experience working with special needs children. Watch for signs that a family is becoming to isolated.  Sometimes being in the trenches, we might not realize how bad things have gotten. During the height of Nick’s puberty period, my in-laws (Jim and Theresa) saw that we were in over our heads. They found some resources and parents to help us find a new path for dealing with the difficult problems we were having.  Reaching out and finding support is essential.   This can be through a local group like NADS (National Association for Down Syndrome).  There are many groups online and through Facebook that I have found to be helpful such as “MyAutismTeam,” “Circle of Moms,” and “Mom2Mom” which has a hotline 1-877-914-Mom2.  There are many more listed under my resource page.

Today there is no school so I wasn’t sure how well I would be able to concentrate to do this piece. Nick was up earlier playing his iPod loudly and pushing buttons as I tried to sleep with one eye open. Over an hour later he crawled in bed next to me.  Surprisingly, he is taking a page out of his brother’s book, still sleeping in now. 🙂

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It’s 11:00am and all I hear is the dull hum of the refrigerator and the sound of my fingers tapping on the keyboard.  No iPod or Thomas the Tank Engine blaring, no water faucets running full blast, no phone intercom or microwave buttons being pushed.  Just crickets…………

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Cheers to all you moms out there and may your Mother’s Day wishes come true. That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #53~Scuba Diving, Really?

Posted on by Teresa Unnerstall

Blog #53~Scuba Diving, Really?

About a month ago I clicked the inbox to purge emails.  I spotted one from Nick’s Adapted Physical Education (APE) teacher. Subject:  Scuba diving…What the? I laughed picturing Nick strapped down with all that equipment on his back and around his face.  I can’t even get him to leave a hat on for more than thirty seconds.  I started to hit delete but something made me pause.  I skimmed the information and hit reply.  “I am not sure this is something that Nick could tolerate.  What do you think?”

His APE teacher, Meredith Jordan wrote back.  “I think we should give it a try! He really enjoys swimming and has no problem putting his head under water. He has also done an awesome job responding to directions given to him during class. It can’t hurt to try!”

Good point, what did we have to lose?  After all, he does love to swim….See Blog #17~Life’s a Beach @https://wordpress.com/post/nickspecialneeds.com/459 for more about Nick’s swimming experiences.

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I read through the information, watched an ABC news piece and checked out the website (www.diveheart.org.)

Scuba diving is the only activity in the world that has zero gravity. And the enjoyment of that zero gravity gives people with various physical disabilities a special freedom.  Jim Elliot started the organization called Diveheart and has been working with divers with disabilities since 1997.  Elliot states that, “There’s a very, very short learning curve in scuba diving with for people with disabilities and without disabilities.”  “Diveheart is a nonprofit whose mission is to build confidence and independence in children, adults and veterans with disabilities through the activity of scuba diving,” said Elliot. “We serve all disabilities. Kids with autism and Down syndrome, the vets coming back with traumatic brain injuries, amputations it doesn’t matter. The only thing that keeps you from diving is pressure related illnesses, open wounds and people with seizures can’t go deep.”

diveheart logo

Fast forward to last week….  I opened up my laptop and found this in my inbox from Mrs. Jordan.  I was stunned!

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Here’s what Mrs. Jordan wrote about Nick’s scuba experience…..”It’s pretty cool; I was getting emotional watching him. He did such an awesome job and I was so impressed with how relaxed he was during the entire process. He followed their instructions without any hesitation. I would definitely recommend trying this again possibly with the same organization. The Diveheart instructors used verbal instructions for Nick. They did show him how to open his mouth wide to get the breathing piece all the way in. They thoroughly explained to him everything they were doing. They did not use visual pictures at all. I had a peer partner in the water with him assisting the instructor. The instructor did have to hold the breathing piece in his mouth for a while until Nick realized he had to hold it. Once he got the hang of it he did not want to come up! He was SO relaxed the entire time. They had pretend fish/water toys in the water and Nick LOVED diving for them! Needless to say, he did not want to get out of the water. He was in for about an hour!”

Look at my frogman go :)….

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Diving for toys…..

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Sometimes I have to remind myself not to set limits on Nick.  Mrs. Jordan was right, it can’t hurt to try. Thank you Mrs. Jordan and Diveheart! 🙂 I am very grateful for Nick to be given this opportunity.  I would never have thought to try something like this.  Lesson learned, sometimes you have to *Think outside the box.

thinking outside the box

That’s what is in my noggin this week.  🙂

~Teresa

*Thinking Outside the Box according to The Phrase Finder means to think creatively, unimpeded by orthodox or conventional constraints.  It originated in the USA in the late 1960s/early 1970s. It has become something of a cliché, especially in the business world, where ‘thinking outside the box’ has become so hackneyed as to be rather meaningless. The ‘box’, with its implication of rigidity and squareness, symbolizes constrained and unimaginative thinking.

Posted in Government/Legal Matters Related to Special Needs, Recreation/Leisure and Special Needs

Blog #41~Back to the Future

Posted on by Teresa Unnerstall

Blog #40~Back to the Future

Candles blown out, presents opened and heads resting on pillows.  Another birthday week celebrated.  It’s was a big one for Al the 5-0 and Nick now 19 years old.  Only a day apart separates them. On the night of his birthday, Nick had crashed in his room, but he woke up and crawled in the king bed next to me.  I hesitated but pulled the covers up and nestled my cheek next to his.  I should have walked him back to his bed, but I wanted him near me. I needed to feel his warmth and hear his breath against my cheek.

Flashback to 19 years ago, Nick was held in ICU under oxygen and monitored.   I didn’t get to hold him or nurse him that first night.  I barely knew him. Small, helpless, holding on, I had no idea if he would be okay.  I wouldn’t be able to put my arms around him that night and it crushed me.

And so on the evening of his 19th birthday, I took in his breath and felt his limbs stretched long like a mature adult. I gazed at his features, the almond shaped eyes and tiny nose.  Similar they were, as if I could close my eyes and transport myself back to 1994.  And for a moment I did, to the time when I was in fear for my son’s health and whether he would be okay as the two nuns entered my room to hold hands and pray.

Exhale, I am back to the future. Slapped into what I should face.  But I don’t want to.  It’s an ugly web that is snagged with red tape. The maze of bureaucracy is daunting. First it was filing to continue to be Nick’s guardian (yes when he turned 18 we had to file to become his legal guardian since he can’t take care of himself.) Second it was to apply for SSI benefits that he qualifies for. Third, when your child turns 19 then you must contact DHS to have them switched from child Medicare benefits to adult. I only found out about this snafu the night before his 19th birthday, yikes!  I still don’t think I have my mind wrapped around any of this.

And on top of this, Nick is graduating high school in May and moving into a transition program until age 22.  I can’t say that I am ready to face the future after that.  Where will he live? Will he be taken care? Is he going to be safe and happy?  I attended a transition fair last week on the eve of Al’s 50th birthday.  I filled up my goodie bag with flyers, free pens, pads, cinch bags and sage advice. I came home and hit the wall, overwhelmed and that is where I stopped; until tonight.

After dinner out with Nick’s grandparents we came home to celebrate the birthdays. It is cold.  The heater went out sometime over the weekend. We kept our coats on as we gathered around the kitchen island.

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As I lit the candles on the chocolate cake for Nick to blow out, I had a flashback. While we cupped our hands around the steamy cups of coffee I spoke.

“Isn’t this ironic, here we are with no heat in the house.  It is just like when Nick was born and the ice storm had knock out the power. We didn’t know what we were doing while Nick lied there in ICU or whether he was going to be okay.  And poor Hank was so scared of the fireplace; that’s all we had to heat the house.”

Al pointed out something I had forgotten. “Mom you had the oven and heaters blaring on the stove top to keep it warm, remember?”

Oh how we were lost, Nick in ICU…. No power, and a new diagnosis of our son having Down syndrome…There is more to the story….. But you are going to have to wait for the book 🙂

Back to the present, I sit by the fire writing and try to stay warm.  I pictured little Hankie just 19 months old and scared standing at the staricase immobilized, pointing to the fireplace saying, “hot.”

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Birthdays bring a time to pause and reflect back and also look to the future. I don’t have any answers on Nick’s transition plan. In a way like Hank, I have been immobilized. I am trying to push the webs out of my face, and walk through but I feel a push and pull. I need to look to the future for my son.  He is 19 and like his brother Hank who is 20 and a sophomore at NIU, there is a need to let him spread his wings. But Nick knows no fear or evil.  I can’t help but feel like I am the only one who can protect him. That’s what is in my noggin this week. For now I will continue to pray for strength to fight my way out of this tangle.

~Teresa

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Baby nick 🙂

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

Blog #22~ Grooming 101

Posted on by Teresa Unnerstall

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 Down syndrome, Recreation/Leisure and Special Needs

Blog #17~ Life’s a Beach

Posted on by Teresa Unnerstall

Blog #17~ Life’s a Beach*

Drip, drip drip… Last Wednesday morning we were met with nothing but grey skies and the sea blending as one. It put a damper on the day in which we just wanted to bask in the sun and splash in the water. The rain tried to beat down our souls.  But all we had to do was crack open the patio door and hear the waves.  There is something about the ocean that energizes and grounds me all at once. Here is a favorite quote of mine…..

“Why do we love the sea? It is because it has some potent power to make us think things we like to think. -Robert Henri

What is it about being by the water that awakens a person?  For as long as I can remember, Nick has loved the water. Nick is 18 and has Down syndrome and autism.

Nick age 5 with his Dad, Al……

Too Cool, by the pool, Nick age 14 at the NADS Behavior Retreat….

Nick heading to swim class at MVHS….

The thought of getting Nick to actually learn to swim seemed impossible.   I enrolled him in lessons with the special recreation department where we met Mary who had been teaching for over 30 years.  She had a no nonsense approach and Nick knew she meant business.  About 5 years ago she got him to go underwater and dive for pool toys.  Seeing Nick swimming was amazing.  He looked like all the other kids in the pool. No longer was he the boy that sat in the shallow end stimming with a cup.

A few years later I started private lessons in her backyard pool out in Batavia.  Her task was to coordinate the arms and legs together. Mary put flippers on Nick and suddenly he could feel the kicking sensation that propelled him faster across the pool.

The following summer he was syncing up the movement without the flippers and heading into the deep end.  It was magical!  His technical skills are far from Michael Phelps, but he can do a mean doggie paddle.  Most importantly, he can make it across the pool without sinking.

No flippers or flotation devices….Go Nick!

This is our third year to go to the Outer Banks of North Carolina, (simply as OBX here.)  It is a crazy strip of land known as a sandbar that rose above sea level.  Just turn the knob to Bob, radio 93.3 and chill.

OBX Beach time 2011~Hank, Sam and Nick…..

The house we stayed at has a private pool and the beach access. Nick isn’t crazy about the texture of sand, but we continue to push him out of his comfort zone.  It is important to get him out in the world.  If we don’t then his world and ours will become too narrow.

Here is a bird’s eye view much in the movie “Rear Window” of our back yard here in the OBX….

A walk down the beaches of the Outer Banks is a greeting of many characters.  Floppy hat ladies in low slung chairs reading books. I wonder how many are reading Fifty Shades of Grey (or as my writer friend, Marcia F. calls it “Mommy Porn.”) A glance to the ocean you find the sporty types throwing Frisbees, footballs or out on the water kayaking, paddle boarding, body surfing and skim boarding.  Joggers dot the edges of the shoreline in varied stages of serious (with headphones and shoes) and casual barefoot walkers simply taking in the day.   Sandpipers scamper across the sand and ghost grabs burrow and pop up from time to time.  Gulls and pelicans glide across sky in seemingly perfect formation. Umbrellas act like rainbows adding pops of color across the coastline and the fisherman patiently wait for the catch of the day.

Al with Ron, my brother in law, his happy place….

The Outer Banks may be a narrow strip of beach but it offers up a large slice of chill time that brings families together and fills up the photo album with wonderful memories.  I love this beach quote!

 “Our memories of the ocean will linger on, long after our footprints in the sand are gone.” –Anonymous 

The sun did come back out.  I sat on the beach thinking about life.  It isn’t always smooth as when the full moon casted its glow over the quiet waters the night before.  The waves can get rough when navigating a child with special needs. Especially during vacations, when they are out of their element. But I am not going to let my world with Nick close in on me.  Like the ocean that has no boundaries I plan to keep pushing out to the horizon. That is what is in my noggin this week.  Until next Monday, may your life be a beach!

~Teresa

*There is no direct origin for this phrase “Life’s a Beach. But Word Reference.com says this about the quote, “Although the expression ‘life’s a beach’ may have originated as a pun for ‘life’s a bitch’, it’s also a statement on it’s own, that life is not a bitch at all, rather, life’s a beach. It signifies that the wearer views life as a pleasant beach – sun, surf, relaxation…