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.

police-car

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.

5-point-harness

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

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

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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 🙂

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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

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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

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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 🙂

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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

 

Posted in Uncategorized

Blog #158~Down Syndrome Awareness Month

Blog #158~Down Syndrome Awareness Month

Down syndrome awareness month

October is Down Syndrome Awareness Month.   This month, I want to share some information and educate the public about Down syndrome.

Facts about Down syndrome

Courtesy of The National Down Syndrome Society (NDSS)

*Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
*There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
*There are more than 400,000 people living with Down syndrome in the United States.
*Down syndrome occurs in people of all races and economic levels.
*The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
*People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
*A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
*Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
*People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.
*All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
*Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

Down syndrome journey

Since this is about awareness, it is important to educate people on the appropriate language that should be used. People with Down syndrome should always be referred to as people first.

Do NOT say:

*”A Down syndrome baby or child.”

*”Down’s baby or child”

*”Down’s”

*”He has Downs”

Instead say: “A child with Down syndrome”.  Finally it should be said “Down” and NOT Down’s.” Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.  Global Down Syndrome.org mentions that,  “Originally, it was referred to as his syndrome – Down’s Syndrome.  In the UK, Europe and many other countries, the correct term still remains “Down’s Syndrome.” In the U.S., it was changed to Down syndrome (drop the possessive) as to emphasize that it was not Dr. Down who had the syndrome nor was it his”.

My son Nick is 22 years old, and has Down syndrome and autism.  I’ve heard all of these incorrect phrases over the years. Please help me educate the public on the proper way to refer to a person with Down syndrome.  Thank you for reading and spreading awareness about Down syndrome.  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, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #157~Making Inclusion Work

Blog #157~Making Inclusion Work

Is inclusion right for your child?  That was the question I addressed in last week’s post.  Inclusion simply stated, means that a student is supported in the general education classroom setting with given supports outlined in the IEP.  The IEP is an Individualized Education Plan, is a document for special education students.  This document identifies how the student will learn, what services the school will provide, and how their progress is measured.  My son Nick, was in an inclusion classroom during his elementary school years. He has Down syndrome and autism, and benefited greatly from the experience.  How do you make the inclusion setting work for your child with special needs?

The Individuals With Disabilities Education Act (IDEA), amended version 2004, does not actually list the word inclusion. The law actually requires that children with disabilities be educated in the “least restrictive environment appropriate” to meet their “unique needs.” The “least restrictive environment” typically means placement in the regular education classroom which typically means ‘Inclusion’ when ever possible. (Source taken from about.com)

The IEP team works with the parents to determine the least restrictive environment and builds the placement around this concept.  What will the child need to be successful in a regular education classroom?   The IEP team and parents should collaborate to identify supports needed.

Classroom Supports:

*Modified Curriculum:  (Regular education teacher and support/case manager) work together to adapt the current assignments for the child.  Make a plan to address what will be learned in the regular classroom, and how will the student will learn that similar information?

visual work board

*Staffing:  Does the child need a paraprofessional (classroom aide)?  What is the ratio? What additional training will be needed?

*Equipment:  Physical environment (modified desk, chair, adaptive equipment/school supplies, sensory supports)

*Assistive Technology:  Communication (Alternative Augmentative Communication “AAC” device, Picture Exchange Communication System “PECS”, Sign Language/Interpreter), or other devices using apps for to navigate schedules and assignments.

alphabet tracing  ipad-touch-chat

*Sensory Breaks: What space will be provided, is there a sensory area in the school?  How will the student request a break (need a break icon, button on AAC device)?  What equipment is needed, (noise cancelling head phones, figit toys, nubby cushion, music, weighted vest or blanket, bean bag chair, swing, trampoline)?

figit toys   nubby therapy cushion

In addition to identifying classroom supports, the team should address these questions at the IEP Meeting:

* What are the student’s strengths, and how do we build a plan around them?

*How does the student learn best?

*What behavior support is needed to help the student learn the best, and operate comfortably in the general education classroom?

Identifying supports needed and how to best accommodate the student will set a good foundation to success in the inclusion classroom setting.  The student will benefit by having access to the general curriculum and build social relationships in this community in the least restrictive, inclusion environment.  That’s what is in my noggin this week.

~Teresa

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Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #156~Is Inclusion For Your Child?

Blog #156~Is Inclusion For Your Child?

Are you raising or involved with educating a child with special needs within an inclusion setting?  Perhaps you are considering  an inclusion classroom for your child.  If so, then THIS is the book you need to read:

whos-the-slow-learner

Who’s The Slow Learner? A Chronicle of Inclusion & Exclusion, written by Sandra Assimotos McElwee (Outskirts Press) is a great book and and resource on inclusion.   Her son Sean McElwee was born with Down syndrome.  Sean is now 22 years old and is one of the star cast members of the Emmy Award Winning series, Born This Way on A&E.  

Her goal for writing this book was to educate and inspire, while chronicling her son’s education experiences.  In Sandra’s words, “This is not a ‘How-to’ book, but a ‘How we did it’ book.”

What is inclusion?

Inclusion is a term which expresses commitment to educate each child, to the maximum extent appropriate, in the school and classroom he or she would otherwise attend.  It involves brining the support services to the child (rather than moving the child to the services) and requires only that the child will benefit from being in the class (rather than having to keep up with the other students).  Proponents of inclusion generally favor newer forms of education service delivery.

Full Inclusion means that all students, regardless of handicapping condition of severity, will be in a regular classroom/program full time.  All services must be taken to the child in that setting.  

(From Sandra’s book this information was taken from the Wisconsin Educational Council’s Website)

Inclusion not only benefits the special education student, but also the regular education students in class.  It can be highly successful with the right supports, accommodations, modifications and supportive school staff.  From my own experience, I found this to be the case with my son Nick, who is also 22 years old and has Down syndrome and autism.

Sandra offers a wealth of information in this book.  Each chapter begins with all Sean’s IEP goals for that school year.  The book is loaded with great ideas on how to navigate the school system and how/when to reach out for outside help using consultants to advocate for your child.  This was the case when Sean transitioned into intermediate school, where they determined a need to put a behavior support plan in the IEP.  Sandra provides this full behavior support plan in the book as well, which is very beneficial.  Getting outside support for communication and behavior also helped greatly during the adolescent years with my son, Nick. Keeping in the loop with staff and volunteering in the school and classroom is another great way to keep up with how your child is doing in school.

There are so many valuable lessons that Sandra learned and shares about her son’s educational journey.  Many of which I can relate to having gone through this with my son, Nick.  You are not always going to have a school team or some of the members supporting inclusion for your child.  Sometimes it’s the school staff that are the slow learners.  In this book, you can see how Sandra had to advocate even harder during the intermediate and high school years. Unfortunately this was not always a success. But these actions set the foundation, to make it easier for other families to follow.

The book not only contains a wealth of education information, but many funny and inspiring stories on how Sean touched so many lives.  In one story, Sandra gets out of the shower and noticed the unmistakable odor of popcorn being microwaved.  She fully expected to smell a burnt popcorn next, so she hustled quickly downstairs.  To her surprise, Sean had just opened a perfectly cooked bag of popcorn.  She asked Sean what number he pushed?  Sean looked at her like she was crazy, and pointed to the control panel and said “popcorn”.  It turned out that the all the site words Sean had been learning in first grade were working. Sandra didn’t even know there was a popcorn button on the panel.  In this case she, was the slow learner.

Who’s The Slow Learner? is not just for parents, but a great resource for educators, future regular & special education teachers, school administrators and advocates.  This is the first book that chronicles a student with special education needs from pre-school to high school graduation.  It’s a very instructive book that shows a mother’s determination to advocate for the best available resources in not always a cooperative educational system.

I’m sure this book will benefit many considering inclusion for their child with special needs, and the education team that will be providing for them. That’s what is in my noggin this week.

~Teresa

Catch Sean and his family on the Emmy Winning Series, A&E’s Born This Way, Tuesday nights at 9pm (8pm Central)!

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