Posted in Autism, Autism Safety and Wandering, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #163~Safety & Your Special Needs Child

autism-elope

Blog #163~Safety and Your Special Needs Child

I’ve written a few posts about elopement in past blogs. The terror of losing a child is unlike anything else.  My son Nick has Down syndrome and autism, and I know first hand how that feels.  It is essential to put safety measures in place to prevent wandering/elopement.  This week’s blog is about safety and prevention measures from a police officer’s perspective.

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Recently at the National Association for Down Syndrome (NADS) retreat, a presentation was given by a NADS member, who is a police officer.  Some of the key points made were on safety and  wandering/elopement prevention.  Seatbelts alone don’t always work for older kids with special needs.  There are many seat belt locks available as well as bigger car seats for children over 65 pounds, which have  5 point restraint.

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There were several suggestions given to promote safety, and prevent elopement.  Putting stop icons on all doors, using door/window alarms,  and changing the locks or moving them higher.  It might also be necessary, (especially if your child is non-verbal), to invest in a tracking device/bracelet and an identification bracelet.  Some police departments have tracking devices available.  For more detailed information on this, type in “Blog #142” in the search engine on the top, right side.  Blog #142, gives specifics on elopement and autism.

caretrak bracelet

Nick wears a medic alert bracelet that stays securely on.  Information on the back includes his name, medic alert number, Down syndrome, autism and non-verbal.

medic-alert

Check with your local police department about getting in the data base to provide more detailed information about your child with special needs.  Here in Illinois, the Premise Alert was mandated, in 2009. The Illinois Premise Alert Program (Public Act 96-0788) provides for Public Safety Agencies in the State of Illinois to allow people with special needs to provide information to Police, Fire and EMS personnel to be kept in a database.

In addition to the  Illinois Premise Alert Program, a new program aims to take 9-1-1 a step further. Smart911 is a program that supplies 9-1-1 operators with detailed personal information, including names of family members, photos, allergies, pets and more.

smart911

Smart911 is available in participating dispatch centers across the United States.Smart911 enhances the information that a 911 call can provide and helps first responders help you faster during an emergency.  Citizens create an online profile through a secure website at www.Smart911.com. This profile contains information that might be important in an emergency. If you place a 911 call anywhere within the county, your profile is displayed to the 911 dispatcher at the Emergency Communications Center, and the information is relayed to first responders.  Smart 911 is a national service that is available free to everyone. The service can be especially valuable to households with young children, seniors, or anyone with a physical or mental disability.

It is essential to take precautions to promote the utmost safety and security for you child with special needs.  Especially if they are non-verbal and have no concept of how to keep themselves out of harms way.  That’s what is in my noggin this week.

~Teresa

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

Cyber Monday Update

cyber-monday

Cyber Monday Update

Hope you all had a wonderful Thanksgiving holiday.  Nick was very excited to see his brother, Hank and his grandparents.  As I was setting the dining room table the night before, he went to his PECS (Picture Exchange Communication System) book, and handed me this icon with his grandparents on it. Nick is 22 years old and has Down syndrome and autism.

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We enjoyed a nice Thanksgiving dinner and plenty of leftover mashed potatoes for big guy!  Nick was happy to see his Thomas the Tank engine ornament, while decorating the Christmas tree.

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Nick tried to make off with his brother’s new vacuum cleaner for himself.  He must have thought Christmas came early for him, instead of Hank. He managed to drag the box all the way into the living room.   He loves to vacuum and does a nice job at it.  This has been one of his community jobs for several years since high school.

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It was a nice visit with family.  The leftovers are finished, the Christmas trees are up, now onto Cyber Monday.  I might have to add another Shark vacuum to the cart.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Happy Thanksgiving

thankful

Happy Thanksgiving

It’s a busy week, so I’m keeping this brief.  Take time to count your blessings and enjoy the special time with loved ones, as you gather together.

I am grateful that Nick is happy, healthy, loving and yes, even mischievous, on this chilly Monday morning.  He kicked off the day in rare form.  In the 5 seconds it took to grab my purse, he rushed over and tossed my freshly brewed coffee all over the kitchen floor. Oh Nick, you do keep me on my toes, and for that I am thankful too.  Hey, it’s Nick’s world…. the rest of us are just trying to keep up.

That’s what is in my noggin this week.

Happy Thanksgiving!

~Teresa 🙂

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #162~ Horseback Riding Therapy

Blog #162~ Horseback Riding Therapy

nick-horseback-therapy

Horseback riding therapy, also known as Equine Assisted Therapy, involves interactions with horses for individuals with and without special needs, including those with physical, cognitive and emotional issues.  Hippotherapy is another term used by physical, speech, and occupational therapists to reach their patients on a personal level.

horseback-therapy

There are many benefits such as motor, emotional and sensory sensations that come with riding a horse. Horseback riding gently and rhythmically moves the rider’s body in a manner similar to a human gait, to improve  in flexibility, balance and muscle strength.

At age one, my son Nick was unable to sit up by himself due his low muscle tone, which is a trait of having Down syndrome.

Nick at age one…..

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We had to prop him up in the high chair, so he wouldn’t slide down or slump to either side.  Nick was receiving physical, occupational and speech therapy in his early intervention program.  Shortly after his first birthday, we enrolled him in a horseback riding therapy program.

Person’s having Down syndrome please note:

“Prior to considering hippotherapy as a treatment strategy for your child, it is important that they have current cervical x-rays to ensure the atlantoaxial joint (or C1-C2) is not at risk for dislocation.  Some people with Down Syndrome also may have a condition known as Atlantoaxial Instability — a misalignment of the top two vertebrae of the neck. This condition makes these individuals more prone to injury if they participate in activities that overextend or flex the neck. Parents are urged to have their child examined by a physician to determine whether or not their child should be restricted from sports and activities that place stress on the neck injury.”

In less than nine months, of incorporating the horseback riding therapy, we noticed a vast improvement in Nick’s posture both in strength and endurance.  At first he couldn’t tolerate a helmet as it weighed him down, (as you can see in the first picture of this post).  But soon, he not only wore a helmet, but was able to keep his head upright, along with and sitting up better.

Nick with his brother, Hank, taken nine months after starting horseback riding therapy…

nick-sitting-with-hank

We decided on horseback riding therapy, initially to help our son gain trunk strength.  However, we soon realized there were many additional benefits that came along with it.  Not only did Nick ride on top of the horse, he also learned how to care for the horse by feeding, patting and brushing them.  This helped to create an emotional bond and opened up new sensory experiences that he couldn’t get in a clinical setting.  Riding a horse helped to wake up the sensory preceptors, making for a fun and motivating experience for him.

Horseback riding therapy was a wonderful experience for our son with special needs. The horses were gentle friends that helped Nick get stronger, build relationships through unspoken communication, and taught him about responsibility.  That’s what is in my noggin this week!

~Teresa

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Posted in Adult Day Programs for Special Needs, Dual Diagnosis Down syndrome and autism

Blog #161~Adult Day Program Update

Nick relaxing

Blog #161~Adult Day Program Update

Nick turned 22 years old in February and aged out of public school.  He now attends an adult developmental training day program.  The program has many enriching and structured activities.  The structure is essential for my son who has both Down syndrome and autism.  Here is an update on what big guy has been doing in this program.

Each week his group goes on several community trips.  This fall, they have gone to various parks, shopping, the library and pumpkin farm.  The group plans their grocery lists of items needed for cooking and goes shopping on Wednesdays.  Thursdays are cooking days along with gardening.  Each day includes instructional learning and recreational activities. Once a month, the association celebrates birthdays and holidays, with parties and luncheons.  On Fridays, he participates in volunteer jobs in the community.  These jobs include cleaning and stuffing church bulletins, organizing at a local food pantry, and recently working at GiGi’s Playhouse.

What is GiGi’s Playhouse?

GiGi’s Playhouse is a one-of-a-kind achievement center for individuals with Down syndrome, their families, and the community. GiGi’s Playhouse offers more than 25 therapeutic and educational programs that advance literacy, math skills, motor skills and more; all of which are free of charge. All programs are based on best practices for Down syndrome learning styles, and customized to ensure individual success. GiGi’s Playhouse actually serves infants through adults. GiGi’s Playhouse is headquartered in Hoffman Estates, IL; with 15 locations throughout the United States and Mexico, with more opening soon.

Nick participated in GiGi’s Playhouse activities when he was younger.  It’s nice to see that he has come full circle, by doing volunteer work here, as a young adult.  Check out the photos of Nick in action…….

Nick working at GiGi’s Playhouse, Fox Valley location…

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nick-cleaning-gigis

nick-cleaning-two-gigis

Taking a snack break after working hard…..

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Nick takes great pride in helping out in his community jobs, around the venue of his adult day program, and at home, as well.  He looks forward to going to his adult day program, that provides a safe environment, along with a warm and caring staff.  As Nick’s mom, that gives me great comfort knowing that he is contributing to society and happy in his young adult life.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

Halloween Fun

Halloween Fun

This week, I’m sharing some of the fun costumes my son, Nick has worn over the years for Halloween.  Nick is 22, and has Down syndrome and autism.  It’s not always easy for a person with special needs to tolerate costumes, much less masks, face paint, or makeup. The sensory issues can get in the way of going, “all out” for Halloween.  Here is some that I’ve come up with over the year for him:

Referee Nick

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I put a spell on you!

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Spongebob Squarepants

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M&M Nick with his brother Hank

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What a cute slice of pizza he is….

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Army man Nick, and his brother Hank

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Toot Toot, this one was made for Nick!

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Pump, pump it up Nick!

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Yee Haw! My cute, little cowboys….

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Yo, what up Nick?

Nick gangsta

It’s possible to find, (or come up with), your own costumes for a child with special needs. We’ve had a lot of fun doing this over the years.  Nick and I wish you a safe, and Happy Halloween.  That’s what is in my noggin this week.

~Teresa

Follow Nick:

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Instagram @nickdsautism

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Posted in Down syndrome

Blog #160~Princess Diana’s Goddaughter

Blog #160~ Princess Diana’s Goddaughter

October is Down Syndrome Awareness Month.  I’ve been highlighting stories of inspiration and information about Down syndrome.  I ran across an article in People Magazine the other day about Princess Diana’s goddaughter.  Her close friend, Rosa Monckton gave birth to a daughter with Down syndrome back in 1995.  Princess Diana was the person who provided the ultimate support.

Princess Diana and Rosa’s daughter Domenica

diana-and-domenica

It was Diana who helped Rosa and her family, navigate their new path of having a baby with Down syndrome.  Diana introduced her to doctors, and came with her to all the appointments.  Diana told Rosa, You just have to believe in her, love her, and I be there with you every step of the way”. 

In the People magazine interview, Rosa shared this about Diana, “She  already had that vision of what  Domencia could be, which I simply couldn’t see”.  Fast forward to present, the vision is reality.  Domenica is thriving at age 21, who attended Chickenshed, a performing arts theatre in London. Diana had recommended would be a good fit, years ago to her.  In addition, Rosa set up “Team Domenica”, a charity that provides continuing education for young adults with learning disabilities to help them find jobs.

Rosa Monckton and daughter Domenica

rosa-and-domenica

This fall, “Team Domenica” opened a seaside café in Brighton, England where Domenica and other peers with special needs, are working. The jobs provide a variety of skill sets, so that every person can reach their full potential.  Domenica is trying everything by working various jobs at the café.  Rosa is certain that Princess Diana would be very proud of what she has achieved.

It didn’t surprise me that even after Princess Diana passed away in 1997 , she continue to inspire her friend, and so many others. I’m certain that Diana is up in heaven smiling down on all of us.  That’s what is in my noggin this week. Thank you People Magazine for publishing this article, (October 24, 2016 issue), and helping to support Down syndrome awareness!

~Teresa

Follow Nick on Facebook & Pinterest @Down Syndrome With A Slice Of Autism

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Down Syndrome With A Slice Of Autism got a facelift!

Nick’s world just got a facelift!  Take a peek at our fresh, new look and domain address @www.nickspecialneeds.com.

 Thank you so much  for reading and sharing Nick’s world.

~Teresa 🙂

 

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #159~Down Syndrome Sibling Stories

Blog #159~Down Syndrome Sibling Stories

October is Down Syndrome Awareness Month.  Beauty Exposed, is a brand new book just published, featuring candid stories of life with siblings who have Down syndrome.

beauty-exposed

Chloe Goulding is the 17 year old author that put this book together in hopes of sharing honest stories to encourage families to be encouraged and to expose the true beauty.  She wanted to tell the stories about her own siblings, Charity and Neko, who both have Down syndrome.  In Chloe’s words, “Rather than seeing their disabilities, I see their possibilities and wish that everyone could see what I see.  The beauty is there, waiting to be exposed.”

I first approached Chloe a couple of years ago, when she was seeking stories by other siblings for her book.  My son, Nick is 22 years old and has Down syndrome and autism.  In Beauty Exposed, there are stories from school age, high school/college and adult siblings.  My older son, Hank’s story is included in this book.

Hank and Nick…..

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The stories are candid and personal, sometimes making you laugh and others bring tears to your eyes.  The lessons these siblings learned are woven throughout the book.  Chloe learned to see the possibilities, enjoy the small things, not to give up (as people with Down syndrome have to work 10x harder to walk, ride a bike or talk).

In Beauty Exposed, you get a glimpse into what it’s really like to be a sibling of an individual with Down syndrome.  It can be challenging and yes, sometimes embarrassing. I couldn’t help but laugh at some of the similar stories that reminding me of my son, Nick.  He’s not the only one that is sneaky, clever and charming.  One sister wrote about her brother getting into her room and breaking multitudes of perfume bottles, time and again.  “The little cutie can do damage like a tornado.”  Another brother writes, “He makes our family laugh all the time.  He’s got some great dance moves, and he can sing aloud.  He’s also the king of funny faces, and KNOWS how to charm an audience. 

One of my favorite stories was about Frankie. His brother writes about his own birthday, as it is time to blow out his candles.  “And before I can take a breath, half of my birthday candles are blown out.  For the 14th year in a row.  But it’s okay, because his smile is better than any wish I could ever make.” 

While many stories are familiar with my own son, each contributor brings their own unique perspective.  They have struggled and defended their siblings with Down syndrome.  Yet, at the same time have they’ve experience empathy and learned what love is in a deeper sense.  These stories show that without their sibling with Down syndrome, they would be a very different person.

Reading these stories, I got a sense of just that.  Each sibling learned valuable lessons much earlier in life having been touched by Down syndrome.  Just some of the lessons included that of acceptance, not taking things for granted, perseverance, forgiveness, compassion, patience and most of all, love.  One story written by an Archbishop speaks to this, “Giving and receiving are intertwined.  We never do one exclusively.  In the case of my brother, it is not a cliché to say I have received much more than I have given.”  That is the common thread in Beauty Exposed, and having the extraordinary opportunity to know someone with Down syndrome.

Thank you Chloe Goulding, for exposing the beauty that is Down syndrome. For more visit http://www.BeautyExposedtheBook.com.  The book is available for purchase on Amazon, I’m going to give it 5 stars!  I hope that we can all continue to advocate for those individuals having Down syndrome not only in October, but all year-long.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Columbus Day

columbus-day

We are taking a break this week!   There are many topics of Nick’s world, in the archives to explore:

Safety/Wandering

Behavior/ABA

Down syndrome

Dual Diagnosis Down syndrome and autism

Education/IEP’s

Feeding/Hygiene

Government funding and legal issues

Health Issues and Down Syndrome

Special Needs Resources

Special Needs Parenting

Therapies (OT, Speech, and PT)

Recreation/Leisure

Tech/AAC (communication devices)

The Fun Side of Nick

Thank you for reading and sharing Nick’s World!  You can find us on Facebook and Pinterest @Down Syndrome With a Slice of Autism, on Instagram @ #nickdsautism, and Twitter @tjunnerstall.  See you next Monday for a fresh new blog!  That’s what is in my noggin this week.

~Teresa