Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Speech and Occupational Therapy

Blog #69~Down Syndrome, Autism and Speech

Blog #69~Down Syndrome, Autism and Speech

I am often asked about Nick’s ability to produce words given the fact that he has Down syndrome and autism.  He does have a vocabulary including a few expletives that he picked up from us somewhere along the way. I find it interesting how he can say those words pitch perfectly.  This week I have a very special guest blogger.  Brian Sabella is Nick’s speech therapist and shares his perspective on working with Nick at Suburban Pediatric Therapies:  

Speech-Language Therapy and Nick

By Brian Sabella, CCC-SLP

I have been providing clinic-based speech-language therapy for Nick for over four years now. I feel fortunate for the experience for a couple reasons. First and foremost, he absolutely cracks me up—every week. There’s something about his brand of adolescent, slapstick humor that just resonates with me as a fellow male. Additionally, Nick’s family and support system are a pleasure to work with. They hold very high expectations of his communication abilities and understand communication takes other forms besides the spoken word. Nick uses a multifaceted system that includes spoken words, printed pictures, and electronic devices to communicate throughout his day. And as a speech therapist, I love it. For Nick, progress in “speech” means being able to communicate more effectively; it isn’t just about talking!

For those curious about the speech Nick does work on, here is a sample of some words we have practiced and continue to practice: help, Sprite, plate, shower, taco, pasta. With many of these words, Nick is not expected to articulate them exactly as you or I would, but rather, to produce them in a way that a listener would be more likely to understand. The idea is that Nick will probably be handing his conversational partner a picture of a taco anyway, so the spoken word is meant to enhance the communicative exchange. With this specific word, Nick will often produce aco, omitting the t. During our drill practice, I will call attention to my mouth and ask Nick to say it like I do, annunciating that missing t  sound and providing a visual cue (such as pointing near the area of my mouth where the sound is produced). After a correct production is established, Nick is encouraged to say it again a total of five times. Performing a high number of repetitions is always the best way to learn a new movement pattern, whether that movement is a golf swing, a pencil stroke, or a spoken word. Admittedly, speech drill is not one of Nick’s favorite things to do, so his good efforts are always rewarded with a bit of praise or even a small morsel of food.  You know, just to stay on his good side.

Most of my time spent with Nick in therapy hasn’t actually been focused on improving his speech. Some of it has. But I’m actually more concerned with improving Nick’s ability to communicate through other means. The reason for this is because, like many other individuals on the autism spectrum, Nick shows a strong preference for pictures.  He also presents with apraxia of speech, which further complicates matters. This is why at home and at school, Nick’s uses a picture exchange system that helps him communicate during everyday activities.

Teresa carries around with her a set of pictures of Nick’s favorite fast food restaurants.  When they are out running errands and it’s time for lunch, she shows Nick the pictures and he points to the logo of the restaurant he’s in the mood for. If he requests Taco Bell (which he usually does) he can then flip to a page that shows pictures of their menu items and he can indicate which ones he wants to order. Much of our time in speech therapy has been spent working on expanding his comprehension and use of these pictures.

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Then there’s the Bored Board. As readers of this blog, you know that when Nick is bored, he finds ways of wreaking havoc in extremely creative ways. Picking up on these signs of boredom before Nick decides to dump fajita seasoning on the cat or spill an entire bottle of cooking oil on the floor will allow his parents to redirect these behaviors to something less destructive. The Board Bored shows Nick pictures of more appropriate objects and activities to request: DVDs, computer games, an iPod, a whoopee cushion, Flarp noise putty, a (fake) bloody Halloween hand, a sound effects toy that makes burping and glass-breaking sounds, etc.  Nick and I have spent hours working on requesting with the Bored Board so that he can more effectively use it in a time of need.

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Recently, our sessions have been focusing on having Nick formulate requests using “I want.”  We set up a board using an alternative-augmentative communication (AAC) iPad app called Proloquo2Go. It transforms the iPad, iPhone, or iPod Touch into a high-tech voice output device that helps a person communicate by typing or touching pictures. Nick’s screen displays a variety of preferred snacks and some phrases, including “I want.” Our goal was to have Nick indicate which snack he wanted by pressing “I want” then the snack item.  When he does this, the device speaks the sentence “I want popcorn;” I then reward him with some popcorn.  If Nick only touches the snack item without “I want” first, then I prompt him to press both.

Proloquo2Go

As you might imagine, producing these sentences was initially difficult for Nick.  But over time, he became very good at producing them.  This graph tracks his progress and shows that Nick went from almost always needing support to produce these “I want” requests to, after five sessions, almost always producing them independently.

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As you can see, speech therapy is not always about speech.  For Nick, speech therapy is about helping him communicate effectively, even if it means doing so with pictures or electronic devices. With an alternative system of communication in place, Nick’s life is a little easier.  And his pets are a little safer, too.

Brian Sabella and Nick working at Suburban Pediatric Therapies 🙂 ……

Brian and Nick

Special thanks to Brian Sabella, CCC-SLP for sharing his insights this week.  For more about Suburban Pediatric Therapies check out their website at http://www.sptherapies.com.  As you can see there is much more to communication then just speaking words.  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 Autism, Down syndrome, Feeding, Personal Hygiene, Toileting

Blog #67~Dear Abby, Down syndrome and Autism Style

Blog #67~ Dear Abby, Down syndrome and Autism Style…

Dear Abby

Advice Columnist, Dear Abby 🙂

It’s comforting to know that as a parent of a child who has Down syndrome and autism I can click the mouse and find support online. When Nick was born 19 years ago, a nurse handed me a couple of brochures on Down syndrome.  That was it!   This is the vision sustained me after hearing of Nick’s diagnosis of Down syndrome. Thank you, Chris Burke…..Actor, advocate, icon, my rock star!

Chris Burke

Ten years later we would meet Chris in person at the National Down Syndrome Congress convention.  (For more information: http:// www. ndsccenter.org)

My older son, Hank with Chris Burke at the NDSC  Convention……

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There are several groups that I belong to on Facebook. (Just type in “Down syndrome and autism” in the search engine.) These parents are going through many adversities trying to get through the day and night with their kids.  Most are sleep deprived because their children are up all night turning on lights stimming, banging things against the wall, and opening and slamming doors.  I dedicate this week’s blog to these brave warriors who get up weary, reaching for the Visine and Advil to take on another day.

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Down syndrome and autism support groups are a safe haven to share war stories, tips, get advice, commiserate and laugh.  No one flinches when a parent writes about a walk on the local nature trail, and stopping to go back to their dawdling child.  The 11 year old stood there having just pooped in the middle of the path. What can I say but, it happens.   Topics last week were varied.  One mom needed help on how to explain and guide her daughter about getting her period.  I added a comment about a great book that tackles puberty and body privacy issues called:  “Taking Care of Myself,” by Mary Wrobel.  There were dozens of helpful tips from other parents who had daughters that had dealt with this issue.  Another parent had just given birth to a baby who has Down syndrome.  I was moved by all the support given to this new mom. Here are just a few of the many offered to her:

  • “Go home and bond and love your baby”
  • “Congratulations you have been blessed.”
  • “Get regular checkups and a heart echogram to rule out heart defects.”
  • “Low muscle tone may make it difficult to nurse your child but don’t give up.”
  • “Focus on the baby, not the Down syndrome.”
  • “Go to www.noahsdad.com it has great information presented positively.”
  • “Check out www.futureofdowns.com it has a lot of good information.”

It’s good to know that the struggles of feeding, toileting, hygiene, sleeping, sensory, gross and fine motor issues are felt by so many parents.   For a long time I was alone.  I pulled away from the Down syndrome support groups because I didn’t fit in.  Nick didn’t progress like the kids who just had Down syndrome.  After Nick’s diagnosis of autism I reached out to the Chicago based group, National Down Syndrome Association: http://www.nads.org.  Within NADS, there is a group is called “More than just Down syndrome.”  I found a new home here.  We have a unique bond because these parents get it!

We’ve have been through it all with Nick.  Our days are far from perfect. He still wakes up some nights but at least he isn’t banging the walls or turning on all the lights.  But some things have become easier as he has matured into an adult.  Just yesterday we gave him the best, most cooperative haircut ever!  Miracles do happen. 🙂

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As I wrote about in Blog #66, reaching out to a support group has helped me realize that I am not alone on this path. I’m not the only one who has bent down and had to clean up my child’s poop.  Bless these warrior parents for getting up and fighting the good fight!  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

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…..

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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

Blog #65~Tour De Nick

Blog #65~ Tour De Nick

Here’s how the scene sets up……Enter Nick into the Fox Valley Park District Recreation Center with bike helmet in hand walking appropriately down the corridor. He gives the queen wave (his signature hello to patrons passing by). Great start, yes! 🙂 We got there early, and waited in the viewing area.  Without warning, Nick suddenly hurled his helmet at the receptionist.  I threw my hand up trying to deflect it, but missed.  His helmet narrowly skims the side of her face.  This is shaping up to be a long week…. I Can Shine- Lose the Training Wheels Bike Camp… Hmmm, what the hell was I thinking?

I was thinking that after the success of his scuba experience that maybe I should try to expand his horizons.  Check the May 2013 archives to read about this in Blog #53~Scuba Diving, Really?   Click here and check it out:  https://nickspecialneeds.wordpress.com/2013/05/06/blog-53scuba-diving

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Had I been limiting my son’s potential due to his dual diagnosis of Down syndrome and autism?  It was time to try something new and bike camp seemed like a good plan to move him forward.

At the parent meeting the staff went explained of how the week would go. Approximately 80% of the individuals who participate in our iCan Bike programs ride a two-wheel bicycle independently by the end of our five-day programs. The remaining 20% of these individuals make tremendous progress towards this goal and leave our programs accompanied by parents and/or siblings trained as ‘spotters’ to pick up where we leave off!  The bikes used are lower so that the child’s feet can easily touch the ground upon stopping.  Roller wheels are put on the back to better aid in balance.  As the week progresses the wheels are changed out to wean the rider off and get them on two wheels.  For more information visit, http://icanshine.org.

Armed with a task strip of images we proceeded…..

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Day 1:

Nick entered the venue along with 7 other kids who have special needs.  Some were hesitant to get on the bike right away.  The volunteers managed to get the helmet on him, then Nick proceeded to do a stop, drop and plop on the ground.  After some coaxing he finally got up and sat  on his designated bike with roller wheels on the back.  Getting started pedaling was tough and he is unable to balance.  He couldn’t steer at all.  The bike began to shift back and forth across the tennis court like a metal ball bouncing off the bumpers inside a pin ball machine in slow motion.   I cringed… A turtle could have beaten him easily down the court.  He stopped often and I could see him pinching his cheeks (a sign that he is frustrated.) Through the glass I could tell he was cursing too.  I took off to buy him a Sprite to use as a reward each time he made a lap around the courts.  75 minutes each day for 5 days, I wasn’t sure this was going to work out.

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Day 2:

I pulled into the parking lot and Nick began to clap.  Whew that’s a good sign. 🙂 Nick accepted the helmet much better.  He was able to handle more laps around the tennis court going a bit faster and seemed to pinch his cheeks less. It was great to see him ride the tandem bike and stay in sync with the staff member behind him. Reward for the day, Taco Bell!  I am going to put 5 pounds on easily this week, ugghhh

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Day 3:

The staff announced that this is the most exciting day of the week.  “Today is launch day.”  🙂  “Many of the kids will be taking off on two wheels!”  Parents were encouraged to come in and cheer, take pictures and celebrate.  I got a lump in my throat seeing these kids take off with success. Pride was written across the smiles on their faces.  Nick was making improvements but still had trouble pushing the pedals.  He worked on the trainer with a goal to pedal ten times in a row.  The staff reported that he was able to balance better and was starting to steer and turn more on his own.  However, he would be a failure to launch.

Day 4:

This was move in day for his older brother, Hank who attends Northern Illinois University.

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Nick’s respite worker, Lara said he was up on two wheels with the spotters close at hand.  He had a good day and enjoyed lunch at McDonalds afterwards.

Day 5:

Nick started out on the trainer to work on pedaling technique.  He road the roller wheel bike, tandem bike and the 2 wheeler bike with a handle on the back.  I took a video of him on the 2 wheeler bike. He was so slow that the footage looked like a still frame picture.  Nick was the last remaining cyclist to head outside and the only one who didn’t launch on two wheels. The iCan Ride staff recommended we put him on a 24 inch cruiser bike with a handle attached to the back.  She felt he made progress balancing and turning and encouraged him to come back next year. The  Fox Valley Special Recreation Association coordinator  gathered the kids together for a group picture.  Each child was rewarded a special license to ride.

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I am glad that Nick had this experience.  My goals for the week:

  1. Give him something to do that was structured and physical.
  2. See if he could pedal so we could possibly look into getting a tandem bike.
  3. Wear him out so he wouldn’t drive me bonkers while he is out of school. 🙂

Nick made improvements and endured more each day, plus he didn’t have any meltdowns. Did he enjoy it as much as the scuba experience? No, but at least he tried something new and it was not an epic fail.  Will we do it again?  That depends on whether he pulls those bike camp icons out of his picture communication book and requests it.  You never know until you try…That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome, Government/Legal Matters Related to Special Needs

Blog #64~When Your Child With Special Needs Hits Adult Age

Blog #64~ When Your Child With Special Needs Hits Adult Age

What happens when a child with special needs hit the age of 18?  While other parents are busy visiting college campuses and searching for extra-long sheets for the dorm bed, a parent with a child with special needs is going down a different path.

Nick’s legs are long and hairy like a man, but he still enjoys sitting like a kid.  That along with watching Disney movies and Thomas the Tank Engine….. Welcome to Nick’s world 🙂

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Our son, Nick has Down syndrome and autism.  He is unable to take care of himself and live independently.  When he turned 18 years old we had to file with the court to become his legal guardian.  This process involves a trip to the courthouse to fill out paperwork, pays some fees, secure a court date and then appear in court before a judge with your child. We did not use an attorney but the advantage would be that you get in the queue faster.  Each year you are required to submit an annual report, (available from the county courthouse website), 30 days before the yearly court date.

The next step was to apply for SSI (Supplemental Security Income.)  Supplemental Security Income (or SSI) is a United States government program that provides stipends to low-income people who are either aged (65 or older), blind, or disabled. It is administered by the Social Security Administration and funded from the U.S. Treasury general funds, not the Social Security trust fund.  The application process can be done online (www.socialsecurity.gov).  Once this is processed, a phone interview is scheduled where the application is reviewed and verified.  Determination of how much the stipend will be is based on the applicant’s income, residency/ living arrangement, and resources.

The next item of business in our state was this;  when a child with special needs turns the age of 19 in the state of Illinois, it is required that you apply with the Department of Human Services (DHS) for the adult waiver which covers medical benefits and funding for respite care.  Nick had been receiving state funding through a child based waiver under the umbrella of Medicare.  The funds are used for medical benefits if needed and respite care which allows me to still teach my classes and go out and go out and have a life on occasion.  It is essential to do this before the end of the month of the child’s 19th birthday.  I found myself tangled up in some major *red tape not realizing this.  Be sure and scroll back to Blog #44~Who’s in Control? ( scroll down the right side to the March 2013 archives) for the full story about that debacle! Spoiler alert in case you missed Blog #44 the first time….. oh my!  🙂

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Managing a child over the age of 18 years old has become a part time job.  Every month, all the receipts on Nick’s expenses have to be entered on a spreadsheet to manage his checking account. If the account gets above a specified amount, SSI will be denied.  Each year the annual reports and accounting records have to be reviewed by the county judge and the Social Security Administration. The matters associated with becoming an adult special needs citizen is serious business.  Staying on top of things is essential.  Many school districts offer transition fairs and provide guest speakers who offer valuable information regarding how to navigate through the hoops of bureaucracy.    My advice is to take advantage and learn all you can before your child hits adult age. Oh, one last note~ All 18-year-old males must register for the draft, that’s right even those with special needs. The image of Nick wearing a camo uniform holding a M-16, priceless. 🙂 That’s what is in my noggin this week.

~Teresa

*Red Tape is a derogatory term for bureaucratic methods, derived from the fastening for departmental bundles of documents in Britain. 

red tape documents

 According to Wikipedia:

The origin of the term is somewhat obscure, but it is first noted in historical records in the 16th century when Henry VIII besieged Pope Clement VII with around eighty or so petitions for the annulment of his marriage to Catherine of Aragon. A photo of the petitions from Cardinal Wolsey and others, now stored in the Vatican archives, can be seen on page 160 of “Saints and Sinners, a history of The Popes”, by Eamon Duffy (published by Yale University Press in 1997). The documents can be viewed rolled and stacked in their original condition, each one sealed and bound with the obligatory red tape, as was the custom.

It appears likely that it was the Spanish administration of Charles V in the early 16th century, who started to use the red tape in an effort to modernize the administration that was running his vast empire. The red tape was used to bind the important administrative dossiers that had to be discussed by the Council of State, and separate them from the issues that were treated in an ordinary administrative way, which were bound by an ordinary rope.

All American Civil War veterans’ records were bound in red tape, and the difficulty in accessing them led to the modern American use of the term,[5] but there is evidence (as detailed above) that the term was in use in its modern sense sometime before this.”

Posted in Autism, Down syndrome, Education and Special Needs

Blog #57~ Community Jobs and Nick

Blog #57~ Community Jobs and Nick

How does someone who has special needs of both Down syndrome and autism find work in the community?  This week I am excited to have a guest blogger.  I asked Sara Stoodley, the Vocational Coordinator at Nick’s high school to write a few thoughts on Nick’s jobs.   In Blog #46~ A Day in the Life of Nick (located in the March 2013 archives) I wrote about a typical day at school along with his community jobs. He has some in school jobs such as working in the cafeteria, washing PE clothes and shredding.  Out in the community he worked at three different sites.  He worked at Tabor Hills (elderly residence home) doing maintenance, Re-Store- Habitat for Humanity (packaging and maintenance) and Adopt Pet Shelter (sorting newspapers for the animal cages.)  I think it is interesting to get different perspectives on Nick. 🙂 Here’s what Sara had to share:

Community Jobs and Nick

By Sara Stoodley, Vocational Coordinator MVHS

Nick working cookies

It’s hard to believe it’s been two year since I began working with Nick-what a wild ride! In my 10 years of working in this field, Nick is one of the most unique individuals I have ever worked with!  When I began at Metea last year, I began developing work training sites for ALL of our students, and I never imagined Nick not being a part of that. Through his time in community work block, he has increased his endurance, time on task, initiative, and his willingness to try new experiences. Given who Nick is, you must always be on your toes! Overall, Nick has had more good days than bad, and when they’re good they’re GOOD, but when they’re bad, they’re BAD.

Two stories come to mind:

THE GOOD: In his last week at Tabor Hills, he had an amazing day!!!! Each week, his job is to vacuum an area within the facility. All year, at both sites in which he vacuums we have been working with him to independently get the vacuum, unravel the cord, plug it in, turn on the vacuum, and start working. Most times, Nick needs a prompt to complete each of the steps as he will lollygag, get distracted, sit on the floor, etc. However, on this day, he completed the whole process by himself!!! What a huge accomplishment for Nick! It was also very rewarding for the team of people that he works with to see that he does have it in him 🙂

Nick tabor hills

THE BAD: Two words-FIRE ALARM! Nick always has staff with him 1:1 while he works and everyone that works with him is aware of the thrill the sounds of a fire alarm have on him.  However, one day last year, he was a sneaky little fox at Tabor Hills, a supported living facility, and identified an alarm that he had not previously recognized and he got it!!! Can you imagine the panic that went through the staff that was with him, the residents, the facility staff, and the community? Staff immediately responded to alert the administrators that it was indeed Nick who pulled the fire alarm and that there was no immediate danger but in the moment, YOWZA! Great response by all and well Nick, he was pretty proud of himself  🙂

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The team is only as strong as its members. In my time working with Nick, it has always been a team. Given my role in the building, the opportunity for 1:1 time with students is limited so I rely on Nick’s team (Teachers, Support staff, Speech Pathologist, Social Worker, Occupational Therapist, etc) to assist me in finding the balance, learning his needs, and working to support the development of work skills while always striving for more for both him and our employers!

Nick has strengthened my belief that all students deserve and should be out working. He has increased my marketing repertoire as I have, at times, had to work to keep him at the job sites given who he is as an individual.  He has reminded me that there is never a dull moment and to always be on my toes as you never know what he is going to throw at you! What a pleasure and experience it has been, thank you Nick!

Nick doing packaging at Re-Store- Habitat for Humanity with Miss R…….

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A special thank you to Sara Stoodley for sharing her perspective of how Nick operates in his community jobs.  That’s what is in my noggin this week. 🙂

~Teresa

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

Blog #54~Mom Helpline

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.

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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.

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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?

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.”

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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.

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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 Autism, Down syndrome

Blog #48~Joy and Sorrow

Blog #48~Joy and Sorrow

Yesterday during the homily at mass the message began with the feeling of true sadness for those who witnessed Jesus dying on the cross.   Then just imagine days later what it must have felt like to see the rock pushed way from the tomb and find it empty.  But then Jesus reveals himself as having risen and bringing the great message of eternal life. What an array of emotions.  The depth in which we experience a range of feelings can be overwhelming. The homily message was this…..  Life is like that with the ebb and flow of joy and sorrow.

Rewind 19 years ago to the moment Nick was born.  “It’s a boy!  Does he have all his fingers and toes?”  He did and he was beautiful.  He was smaller than his brother and his hair was lighter. He was perfect. 🙂 We were elated!  Within ten minutes, they whisked him out of the room for further examination.  He was having breathing difficulties.  The room became silent.

Like a light switch the emotions flipped from joy to fear.  Time ticked away as I sat there deserted waiting to find out if my baby was okay.  Cold and alone under a bare sheet and thin blanket, I braced myself.  It seemed like forever until the doctors came back with Al.  Fear was replaced by sorrow.  I saw it all over their faces.  I could tell the news was not going to be good.  Two words:  Down syndrome.  These two words would change our lives forever.

I never saw Down syndrome as the end of the world. After a week in ICU, the breathing tube and monitors were unplugged and we were able to bring him home.   It was more like entering a different world.  Emily Pearl Kingsley wrote this poem about her experience.  She has a son who has Down syndrome.

“Welcome to Holland”
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this: When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland. – Emily Pearl Kingsley

Baby Nick sleeps contently after his christening.  See how baggy his white jumper looks with his low muscle tone………

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Our trip to Holland, while unexpected was filled with joy and sprinkled with sorrow.  There were twinges of jealousy on occasion wishing my child could do the normal things that most children naturally did. But what was much more devastating was the second diagnosis of autism.  The trip to Holland took a bad turn to what resembled Siberia. This change in flight plans changed the game entirely.  For me, this is when sorrow took over.  This new world felt isolated.  My son didn’t fit in with the Down syndrome support group anymore.  The autism groups all seem to have children who were higher functioning both academically and stronger verbal skills.  I felt lost and found myself pulling inward.

Eventually, I plucked myself up, got out of the funk and sought support.  Little Friends Center for Autism helped me educate myself and offered trainings to help my son navigate his world better.  The National Association for Down Syndrome (NADS) offered a retreat for families with a dual diagnosis.  This is where we found parents who “got it.”  We all shared similar stories.  Some which we dared not to tell anyone else before as it would be too shocking.  We laughed and cried as we commiserated.  We found a new home.

Right now the days are filled with more joy than sorrow.  But like all of us there are times where I feel overwhelmed and sad.  I try to remember what saved me. Stay plugged in and ask for help. Always keep the faith that there will be better days ahead.  That’s what is in my noggin this week.

~Teresa

This smile brings me great joy…….. 🙂

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Posted in Down syndrome, Fun Side of Nick

Blog #47~Easter thru the Years

Blog #47~ Easter thru the Years

I love holiday traditions.  Growing up each holiday was filled with many rituals that I carried over with my own family.  At Easter, Mom would pull out all the coffee mugs and prepare each by dropping in a tablet out of the Paas egg dye kit.

Paas Easter Dye

Our tiny, shaking hands would carefully balance the egg on the wire ring and dip it into the rainbow of colors filled in each mug. I always made one like the Sprite “limon” commercials.

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Of course my older brother, Tom would always take one egg and be sure to dip it in every single mug.  The end result was a gross, olive hued mess that he was quite proud of.

The next morning we would put on our Easter outfits.  After church we would pause for a quick photograph before we started the egg hunt in our backyard. Mom’s handy work as a seamstress is unmatched.  Of course, no outfit would be complete without the white, patent leather shoes. Just don’t wear them after Labor day. 🙂

Me and sis in matching dresses my mom sewed.  That’s Bo, our Border Collie in the background…

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The Easter bunny would leave a basket for each of us filled with plastic, green grass.  Mom hated that fake grass. It would get all over the house and she probably cursed it for months afterwards.  The baskets would brim with  jelly beans, tiny bright colored chocolate eggs and the hallowed Russell Stover filled eggs….

Nummy…..

Russell Stover egg

After raiding the baskets, we would change into shorts and spend all afternoon hiding and re-hiding the eggs.

Years later with my own boys in Houston, I carried on the traditions of dying eggs and Easter egg hunts. Here is the first Easter for Nick who is two months old.  I had to hold him up in a coccon because he was so floppy.  You can really see the low muscle tone (a trait of having Down syndrome) in his scrawny legs. His brother, Hank (21 months old) looks thrilled to be wearing that stuffy bow tie and suspenders.

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Nick just over a year old with Easter Bunny, he’s growing…..

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Hank with Paw Paw Tommy and Grandma Babs, all prepped for egg coloring….. Yes I still made the  “limon” egg and Hank took over making the gross egg like my brother use to do.

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Hank (5) and Nick (3)….

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After Texas, we moved to California and still had our holiday rituals….

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Easter Morning in California, Nick is getting bigger!

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This Easter egg hunt was the following year.  We had it out amongst the dunes at Hilton Head Island, SC. with the cousins……

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This is the first time that Nick hunted and found and egg on his own.  Way to go Nick! 🙂

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Since we moved up to the Chicagoland area the egg hunts look a lot different. The egg hunts are usually indoors because the temps are below 40 degrees.  Hank and Nick are searching at their grandparent’s house before mass….

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Hank scores some eggs! Now where is the shiny, golden egg with the $5 bill in it?

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Miss Mellie looks purr-fectly wonderful!

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I hope you enjoyed a look back at our Easter traditions and memories with the boys.  That’s what is in my noggin this week.

Have a blessed Easter!

~ Teresa 

Easter for Jesus