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

DS-ASD~Evaluating Your Child’s Progress Mid School Year

DS-ASD~Evaluating Your Child’s Progress Mid School Year

progress report

Spring is right around the corner. This is a good time to check in and see how your child is progressing with IEP goals and behavior. A child with a dual diagnosis of Down syndrome and autism (DS-ASD), may have additional deficits in speech and challenging behaviors.

Mid-year is a critical time to re-evaluate the teaching methods and current goals set in place, to help your child succeed. Here are five things parents can do now, to take action before the school year ends: https://nickspecialneeds.com/2018/03/12/blog-199take-action-before-the-school-year-ends/

Keep the lines of communication open with school staff, review IEP goals and progress and collaborate with the IEP team to ensure supports are in place so your child will have a strong finish to the school year.  Checking on your child’s progress will help you and the school staff be on the same page at the next IEP meeting.

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

~Teresa

Follow Nick:

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Twitter @tjunnerstall

Posted in Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #217~DS-ASD: Why the Autism Label Matters?

Blog #217~ DS-ASD: Why the Autism Label Matters?

Over the years I’ve read countless stories of parents struggling to get an autism evaluation and diagnosis for their child who has Down syndrome.  IEP (Individual Education Plan) teams often tell parents that, there is no need to get an autism label, because they already have a primary diagnosis of Down syndrome that they can work with.  A doctor may dismiss the idea because the child makes good eye contact, and is highly social.  This is my story as well with my son, Nick who is 24 years old and has a dual diagnosis of DS-ASD.  So, why does the autism label matter?

The book “When Down Syndrome and Autism Intersect, A Guide to DS-ASD Parents and Professionals” by Margaret Froehlke, and Robin Zaborek, states that:

“It’s only in  the past 10 to 20 years that we’ve learned that up to 18 percent of persons with Down syndrome will also have autism or ASD (autism spectrum disorder).  This is information that most healthcare professionals are not aware of and underscores the importance of this reference guide.”

Down syndrome and autism intersect2

Getting the secondary diagnosis of autism for an individual with Down syndrome will open up new doors for services to address the unique needs associated with DS-ASD.  For a parent, it validates what they have suspected for quite some time, and allows them to move forward to get services and support for their child.  Honestly, I was sad at first to receive the news of an autism diagnosis.  But eventually, I realized that this label explained the speech deficits, complex sensory, stimming and violent behaviors that Nick was exhibiting.  I rolled up my sleeves and sought help from the school IEP team and support groups to figure out how to help my son.  The secondary formal diagnosis of autism, enabled us to access the services from the district’s Autism Consultant.  This was the key to opening up new doors that helped in the areas of behavior and communication.

Behavior and communication go hand in hand.  As a child matures and approaches puberty, the behaviors can escalate to meltdowns that endanger themselves, family and school staff and peer students.  It is essential to determine the function of these behaviors and get a positive behavior support plan in place.  Evaluating the mode of communication is the second piece of the puzzle that must be addressed.  If a child is frustrated due to lack of speech or being non-verbal, they will often act out through their behaviors.  Individuals with DS-ASD may act out because they are trying to make sense of their world.  That is why a positive behavior support plan and mode of communication can enable a child to make their needs known, so they can get these wishes met.

autism-scrabble-letters-by-Jesper-Sehested

A BCBA Autism Consultant typically observes the child and takes data on behaviors by doing a Functional Behavior Analysis (FBA).  This detective work will uncover what is causing the behavior and lead to developing a behavior plan to support the child.

Frustrated icon   Detective-clipart-animation-free-images-2

Once the target behaviors have been identified, the Autism Consultant and IEP team members, along with the parents, can collaborate to find strategies to support the child.

For example if a child hits or pinches himself (Self-injurious behavior known as SIBS), or hurting others.  The Autism Consultant would determine possible causes and the setting in which it took place, and what the function of the behavior could be (avoidance, escape, boredom, etc..).  Possible antecedents might include:

*Diverted staff attention

*Unstructured/wait time

*Loud or crowded environment

*A change in activity to a non-preferred activity.

*Disrupted routine

*An object or activity is taken away

Supports can be put into place so that the child better understands what is expected.  A visual schedule, social stories, and communication mode (Picture Exchange Communication System knowns as PECS, or a higher tech, talker device) can be determined and put into place to allow the child to express their feelings, wants and needs.  The use of sensory diets and breaks, using noise cancelling headphones help the individual cope in stressful, crowded and loud environments, or regulation when the child is over or understimulated.

Providing behavior and communication support and strategies interventions for individuals with a dual diagnosis of DS-ASD will make a positive impact both at school and in the home setting.  In addition, the secondary diagnosis of autism opens up doors to more services and funding from state for respite care and behavior support at home. Having outside help with respite care, relieves the burden of stress on the family, and enables parents to continue to enjoy personal interests and taking a break outside the home.

Getting a proper and formal assessment and evaluation for a dual diagnosis of Down syndrome and autism is a game changer.  Individuals with DS-ASD experience the world differently than just having Down syndrome or autism alone.  Intervention and support strategies can be targeted to the individual to specifically address behavior, communication and sensory needs for the child.  Finally, the second label of autism, will open up doors to support groups and additional funding for waivers that provide in home support and respite care for weary families like mine.

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

~Teresa

Follow Nick on Social Media:

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Instagram #nickdsautism

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Posted in Autism, Autism Spectrum Disorder (ASD), Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #215~DS-ASD Independent Work Activity Ideas

Blog #215 DS-ASD Independent Work Activity Ideas

Task bins and binders are a great way to teach academic, vocational and independent living skills.  The sky is the limit when creating activities to develop fine motor skills, letter, number and object recognition, sorting, assembly and sequencing.  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  I’ve created many TEEACH (Treatment and Education of Autistic and Communication Handicapped Children) inspired activities for my son.  The TEEACH method is a structured learning environment that is visual based to help cue a student to working independently.

When introducing task bins and binders, begin with one or two at a time.  Create a visual schedule that you can build upon that includes something to work for (a highly preferred reward).

First-Then Visual:

first then work

Once your child or student is successful with the First-Then schedule, begin to increase the time on task and introduce new task bins and binder activities.

Expanded Work Schedule:

working for chart

So, what type of work activities should you include for your child or student?  My first suggestion is to look at their strengths and build around those.  My son, Nick is good at sorting and sequencing.  Over the years in his IEP’s (Individual Education Plan), we have built goals and jobs around this strength.  Secondly, pick activities that the child or student can do with success and minimal prompts.  This will help them stay motivated and be less frustrated.  Finally, once skills are mastered independently, begin to add in new tasks one at a time.  The new tasks should always be paired with the mastered skills, to encourage confidence and minimize frustration.  Note that point prompting and hand-over-hand may be necessary to assist them in the new task.

Examples of Fine Motor Skill Development Activities:

Wooden Beads on a String making a Colorful Toy Necklace                                  Fine motor stringing Nick

fine motor animals             fine motor clips

Puzzles and Matching games can foster academic and speech development:

 

Be sure to include puzzles and activities that your child or student enjoys, whether it’s Thomas the Tank Engine or Disney’s movie Frozen; this will peak their interest in working. 🙂

These binder activities were made by a speech therapist, grouping like sounds together to work on articulation in addition to matching:

matching

Color matching binder activity:

matching pies

Teaching matching and pairing them with holidays and season changes binder activities: 

 

matching fall          matching weather

Teaching emotions matching binder activity:

(Does the child or student respond and understand better to actual photos or icons?  Build the activities around what works best for them)

emotions2             emotion icons

Assembling and sequencing activities can build skill development for future vocational work:

assembly shapes      assembly school supplies    assembly nuts and bolts     Nick packaging door knobs_Habitat_4 (2)

Silverware sorting and rolling could lead to a job in a resturaunt:

silverware sorting     silverware rolling

Currently, my son Nick is working for 30-45 minutes on task bins and binders.  Here’s how I’ve set it up at home:

Task Two Strip     bins 1 and 2     Bins 3 and 4     nick folding washcloths

Depending on how he is feeling, I gauge what to put in each work bin.  On this particular day, he was not moving as swiftly through the tasks; so I only put one in each bin.  However, there are other times when he flies through the work, so I’ll put in a several in each bin.  Bottom line, listen to your child or student, and look for cues if they seem tired or frustrated and ease off on the demands you are placing on them.

School support teachers/case managers, speech, occupational and ABA therapists are great resources to ask for ideas and materials.  There are plenty ideas on Pinterest.  Many of the materials can be bought at dollar or Five Below stores as well as garage sales and resale shops.

Task bins and binders help children, students and adults like my son, Nick to develop academic, vocational and independent living skills.  Be consistent in the delivery with visuals, task and rewards, introducing the work in small increments.  Alternate the activities with easier or personal interests, (EX/ Disney’s Frozen or Thomas the Tank engine puzzles and matching).  New activities and skills may require hand-over-hand assistance and point prompting.  If the child or student becomes distracted, or bored remind them what they are working for by pointing to the reward (which has been pre-selected).  During the work session, listen to signs and cues of distress or frustration.  Offer encouragement (good job, you got it, yay, uh oh-try again) and back off on the amount of work and time spent before behavior escalates to anger.  Choose activities that promote academic, future employment (whether it’s paid or volunteer work), and functional living skills.

Task bins and binder activities done both at home and school,  will help your child or student become confident, more independent and productive in society.  That’s what is in my noggin this week. 🙂

~Teresa 

Follow Nick on Social Media and view videos of Big Guy in action:

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Instagram @nickdsautism

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

Blog #213~Back to School Tips for Special Needs Parents

Blog #213~Back to School Tips for Special Needs Parents

There are a few more areas to consider when sending a child with special needs back to school.  Children with intellectual and developmental disabilities may not be able to understand change and transitions related to school.  The student’s language skills may be limited and they might have difficulty expressing emotions.  This can all lead to anxiety which can result in behavior problems.  You can help your child by planning ahead, getting organized and putting visual supports in place for the new school year. Here are 5 tips to ensure a smooth start to the new school year for your child with special needs.

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5 Back to School Tips for Special Needs Parents:

1. Look over your child’s IEP (Individualized Education Plan) before school begins. The IEP outlines academic and functional goals, supports needed, accommodations and services. Reach out to your child’s case manager/IEP coordinator or Support Teacher, and ask specifically how these will be implemented, and how data will be tracked.  If there is a Behavior Support Plan (BSP), review it, and make sure that all staff members working with your child have as well.  Note anything that might need to be tweaked in both plans, and share with the school staff. Summer and holiday breaks can often lead to regression in behaviors that may need to be addressed.

2. Arrange a visit to the classroom before school begins.  Provide a profile/resume sheet about your child for the staff, containing any information that will help them understand their likes, dislikes, behavior and communication concerns.  Look for visual supports and a schedule posted in the classroom to enhance learning and understanding.  You can request that a social story (pictures or video); be made of the settings that your child will be in at school, (classroom, lunch room, gym, sensory area, etc.).  It also helps to include pictures of support staff and classroom peers (if possible), in the social story. If a child with autism can see it in picture and/or written form, they will better understand it.  Visual supports, social stories and schedules all act as blueprints to help your child navigate their day.  This will help them understand what is expected and occur, leading to reduced anxiety levels for your child.  The support teacher/ case manager can make these for you to read with your child before school starts.

Social Story for Back to School:

 

 

3. During the classroom meet and greet, arrange a mode of communication with your child’s teacher.  In the past I have used both email, texting and a communication notebook which goes back and forth.  My son, Nick has a dual diagnosis of Down syndrome and autism.  His verbal language skills are limited.  The communication notebook gives the child a voice that describes what their day has been like at school, and how they are doing at home.  This is especially helpful, if your child didn’t sleep well, and you can give the teacher a head’s up, to incorporate more breaks in the day if needed.  In addition to a communication notebook, the teacher can create a custom daily report to share with parents.  Depending on the skill level of your child, words or pictures can be used and looked at together at home after school each day:

Daily Report Charts:

4. Start Early! Get school supplies, clothes and shoes shopping done and haircut at least a week before the start of school.  Having a child with special needs often means a lot of angst over haircuts. For Nick the stress of getting a haircut use to affect him for several days afterwards.  Fortunately, now that my son is older the haircuts are much easier.  Maturity and a good set of clippers have made haircuts successful.  I’m super excited to share with you the new hair clippers that are a GAME CHANGER!  The Remington Short Cut Pro Self-Haircut Kit is cordless, smooth, quiet and quick as it takes more hair in a single pass.  It’s the most sensory friendly clippers we’ve ever used on our son.  5 Minutes and no tears!

 

The night before school starts, have your child help lay out the clothes, organize the school supplies and pick out lunch/snack choices.  This will help to set the tone for  a smooth start to the day and this helps especially at six o’clock in the morning. One thing that was NEVER EARLY; the school bus. Make sure you have carved out your schedule accordingly and have something for your child to do while you wait. On average, we’ve waited 30-45 minutes for the bus to get to our house the first few days of school.

5. Consider doing volunteer work at your child’s school. It is fun and you can see firsthand how your child is doing in the classroom.

Here are a few school volunteer ideas:
*Holiday Parties
*Art Awareness Presenter
*Chaperone Field Trips
*Field Days
*Picture Day
*Work book fairs
*Library aid
*Special Olympics Practices
*Assist Case Manager/ Support Teacher- Making copies, laminating, helping to create classroom supports.

Taking a few extra steps to get organized, familiarizing yourself with the IEP/ Behavior  support plan, visiting the classroom, and providing visuals for your child will lead to a smooth start to the new school year.  Getting involved as a classroom volunteer is rewarding and a great way to interact with student peers and school staff.  Careful planning, organization and providing visual supports will make things easier for your child starting back to school.  Do you have any back to school tips or tricks for your child with special needs? I’d love to hear them.

That’s what is in my noggin this week!
~Teresa 🙂

back to school bus

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan), Parenting Special Needs

Blog #204~ Lessons Learned from the Last Lecture

Blog #204~Lessons Learned from the Last Lecture

Randy Pausch was a professor at Carnegie Mellon and author of the national bestselling book, The Last Lecture.  He encouraged his students to attempt hard things and not worry about failing.  He would give out “The First Penguin Award” to the team who took the biggest gamble trying new ideas and technology, but failed to achieve their goals.  “This award celebrated out-of-the-box thinking and using imagination in a daring way.”  The title of this award came from the way that penguins jump into the water that might contain predators.  Somebody has to be the gustsy, first penguin, and take a bold leap into the unknown.

fail spectacularly

The takeaway is this, it’s important to attempt hard things and  you can expect to hit brick walls.  That is when you gain experience.

“Experience is what you get when you didn’t get what you wanted.”

This quote struck me as I was reading The Last Lecture over the weekend.  My son Nick, was born and diagnosed with Down syndrome.  Years later, he recieved a secondary diagnsosis of autism.  I didn’t get the “normal child” that I expected.  My path raising Nick has been very different then I had planned.  But along the way, over the past twenty-four years I’ve gained a great amount of experience in navigating my son’s journey.

Randy Pausch, a computer science professor gave his last lecture after receiving a diagnosis of terminal cancer, leaving behind a wife and three young children.  His book, The Last Lecture, co-written with Jeffrey Zaslow is a summation of everything Randy believed with some valuable lessons in “overcoming obstacles, enabling others, and seizing every moment.

There are so many lessons offered by Pausch in The Last Lecture.  I want to share a few that resonated with me, as a parent of a child with special needs.  When my son, Nick was born twenty-four years ago, I made some choices on how I was going to manage life.  I was dealt a set of cards, that I didn’t expect.  But soon realized, that I would have to play the hand differently.  This meant getting support to help my son reach developmental milestones and creating a home environment that supported his growth.  I also learned to reach out to parents, therapists and teachers with experience to help me understand how to help my son become the best he could be.

Randy Pausch cards dealt with

Another valuable lesson is in the approach to life when facing adversity.  Randy says, “Make a decision, are you going to be a Tigger or an Eeyore?”  A.A. Milne’s beloved Winnie-the Pooh characters are in two different camps.  I’d choose fun-loving Tigger over grumpy Eeyore every time.  Optimism can take you much further in life!

Randy-Pausch-Pooh-Quote

Here are a few more nuggets of wisdom from Randy Pausch, and how they relate to being a parent of a child, with special needs.  I found these lessons to ring true, especially navigating a dual diagnosis of Down syndrome and autism:

“All you have is what you bring with you.”

I understand all too well the need to be prepared for whatever situation the day may bring with my son.  What do I need to bring and what should I anticipate?  This could be anything from an extra set of clothes, spare iPod, PECS book, AAC device, snacks, Kleenex, stim toys and more.  Identify possible trouble spots/ triggers for meltdowns/messess and come up with ways to avoid these incidences.  Also, have a contingency plan in case as Randy says, “All hell breaks loose”.”

“All you have to do is ask.”

Randy tells a story about his Dad wanting to ride in the nose cone with the driver on the monorail at Disney World.  His Dad assumed they didn’t let regular people ride up there.  Randy told his Dad he had a trick and asked if his Dad wanted to see it.  He walked up the driver and asked, and the driver said yes.  You never know unless you ask, and this is true from my experiences working with doctors, therapists, teachers and other IEP members.  Ask for IEP drafts before the meeting, and to be included in your child’s goal planning.  Ask that the parent concerns (that you’ve written ahead of time), be put directly in the IEP at the beginning of the meeting.  These concerns will be a part of what drives the IEP.  Ask the doctor for whatever your child might need for their health like, prescriptions for therapy, nutritional supplements, evaluations for orthotics and to get all test results as soon as they come in.

“Start by sitting together”

This is essential when going to your child’s IEP (Individual Eduction Plan) meetings.  Randy’s approach to working with a group of people is simple.  Lay all the cards face up on the table and say to the group, “Ok, what can we collectively make of this hand?”  He offers a few tips for a successful group meeting like having optimal meeting conditions (make sure no one is hungry, cold or tired).  I’ll add in cramped rooms with  small chairs, as this has happened to me in past IEP meetings. Randy also adds, to let everyone talk, check your egos at the door and praise each other.  Finally phrase alternatives as questions, so instead of saying, “I think we should do A and not B” try saying,  “What if we did A and not B”.  This allows the team members to offer comments rather than defend their choice.  It opens up the discussion to get input from the whole IEP team.

The lessons that Randy Pausch shares in his book, are valuable.  Here are my takeaways as they relate being a parent of a child with special needs:

*Don’t be afraid to think outside the box and try something daring.

*If you hit a brick wall, learn from it and gain more experience.

*You can’t change the cards that were dealt, but you can change how you play the hand.

*Your approach in playing that hand can be with a positive or negative attitude, it’s your choice.

*All you have to do is ask.  They might say sure, why not.

*Start by sitting together, when it comes to IEP’s the team should come together to be solution oriented, not problem oriented in collaboration approach.

Thank you Randy Pausch for the valuable lessons you shared in The Last Lecture and for the reminder to take what you have learned so that you can help others who might be starting down the same path.

And as you navigate your path always remember this…..

Randy Pausch spending time

  That’s what is in my noggin this week.

~Teresa 

Follow Nick:

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Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan), Parenting Special Needs

Special Needs Back to School Tips

Special Needs Back to School Tips

backtoschool1

Kleenex, glue sticks, crayons, and more, are all jotted down on the shopping list.  It’s that time of year to get ready to go back to school.  But what should you be doing as a parent of a child with special needs?  I’ve got 5 great tips to get you started on the right track!

5 Back to School Tips for Special Needs Parents:

Click here to view these 5 tips- https://nickspecialneeds.com/2016/08/22/blog-153special-needs-back-to-school-tips/

Make it a great school year, that’s what is in my noggin this week!

~Teresa 🙂

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

Blog #150~A&E’s Born This Way, an Exclusive Interview

Blog #150~A&E’s Born This Way, an Exclusive Interview

A&E’s Emmy nominated series, Born This Way premieres its second season next Tuesday, 7/26/16 at 10pm/9pm (Central).  Born This Way features a cast of seven young adults with Down syndrome.  The show follows each cast member pursuing their real lives with passions, wants and needs the same as any other person their age. It will warm your heart, make you laugh and smile. They shine a wonderful light showing how awesome their lives are. And they’ve got serious swag…..

A&E’s Born This Way premieres, Tuesday July 26th at 10pm/ 9pm (Central)

Trump_Key_Art_Premiere_FIN.indd

Recently, I was approached by the marketing department to partnership with A&E to help bring awareness and promote this show.  My son, Nick is 22 years old and has Down syndrome as well as autism.  So, I was happy to jump at the chance to do so.  Today’s blog post is an exclusive interview with the mother of Sean, a featured cast member on the show.

Sean McElwee is 22 years old.  He’s a dashing young man, an excellent golfer and gifted athlete. Sean thrived in inclusion in primary school and survived exclusion in secondary school.  He attends community college and works at Home Depot. He is a self-professed ladies man, and has dance moves that own the floor.

Sean with his parents Rick and Sandra……

Sean family pic

Let’s get to the interview with Sean’s Mom, Sandra Assimotos McElwee ….

Sandra Assimotos McElwee is an advocate for unborn babies with Down syndrome and created one of the first websites for parents with a prenatal diagnosis. She’s the author of three books,Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion”. McElwee contributed to the books, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Our Lives“,  and “You Will Dream New Dreams, Inspiring Personal Stories by Parents of Children with Disabilities.” Married over twenty-two years to Sean’s father, Rick, they enjoy traveling and participating in Sean’s sports activities.  A medical sales professional, McElwee’s most important job is being Sean’s mother.

Interview with Sandra McElwee, Sean’s mom:

1.     What advice do you have for parents with younger children and newborns that have Down syndrome?

—Enjoy your baby, don’t get caught up in the ‘what could be’ although I know it’s hard to not think about a future wedding when you have a baby. The dreams you may have, the dreams that you had that may have been dashed by the diagnosis –they will become new dreams and in my case dreams I could never have imagined in my wildest imagination! 

2.  During the age that Sean was in the public school system, what was the most difficult part of the IEP process for you?  Where you happy with the end result of schooling and his IEP.

—I’ve written a book about this—‘Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion.’

Who's The Slow Learner

Sean was an inclusion pioneer, the first student included with a disability in his elementary school. His inclusion was such a success by the 4th grade the school became an inclusive school and there were no segregated classes and around 40 students with a variety of special needs fully included. The wheels fell off in secondary school. So no, I was not happy with the end result, but the first 7 years were text-book perfect.

The most difficult part of the IEP process was in high school when educators and administrators outright lied to me.  

3.  What advice would you give for new teachers and special education teachers who will be working with students that have Down syndrome?

–Please give your students opportunities. Allow them to express their interests and support them in pursuing their interests. Don’t assume just because someone can’t speak clearly that they don’t have something to say—listen to them. And do not expect a person with Down syndrome to have BETTER BEHAVIOR than the typical students.  

4.  What has been your biggest joy and accomplishment raising Sean?  What has been the toughest time and struggle?

–Seeing Sean grow into a confident, independent adult. The toughest struggles have been dealing with the prejudices of educators who limited his opportunities when he was in high school. 

5.  What would you like to share with the world about Sean, Down syndrome and being on Born This Way?

—I want the world to see that Sean and people with DS are more alike than different, they simply needs support and opportunities to show the world their capabilities. 

6.  As a mom of my son Nick, who is 22 years old and has Down syndrome; what are your biggest fears for your son now that he is an adult? 

—My biggest fears are that he will get his heart broken to the point of not wanting to try again…although he really has a lot of tenacity so like most fears, mine is probably unfounded.

I hope that Born This Way and this interview will enlighten and inspire parents, family, friends and educators who have been lucky enough to be touched by a child who has Down syndrome.  Be sure to set your DVR’s for A&E’s Born This Way.  Please share this blog and the additional social media links below.  That’s what is in my noggin this week!

~Teresa

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