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 Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #176~ Special Needs Summer Recreation Programs

Blog #176~Special Needs Summer Recreation Programs

The heat is on!  Are you looking into programs for your child with special needs this summer?  There are many types of programs available including camps, athletic and leisure programs.  A great place to start is to contact your local park district to see if they offer any special recreation programs.  For programs in here in Illinois click on this link: http:// www.specialrecreation.org

Here are some links for special needs summer programs:

Special Olympics- http:// www.specialolympics.org

Buddy Up Tennis- http:// www.buddyuptennis.com

Top Soccer- http://www.topsoccer.us

I Can Ride Bike Camps- https://www.icanshine.org

Easter Seals- http://www.easterseals.com

Gi Gi’s Playhouse- https://www.gigisplayhouse.org

American Camp Association- https://acacamps.org

Very Well has a list of Inclusive Sports Programs- https://www.verywell.com/special-needs-sports-programs-3106922

Friendship Circle List of Camps- http://www.friendshipcircle.org/blog/2013/02/13/25-summer-camps-for-individuals-with-special-needs/

Diveheart Scuba program- http://diveheart.org

Diveheart 2013 336

My son Nick (pictured above), is 23 years old and has Down syndrome and autism.  He has participated in many of these programs over the years.  These include Special Olympics, Challenger Baseball League, Top Soccer, swim lessons, Diveheart and I Can Shine Bike Camp.  During the summer months he also attended ESY (Extended Summer Year) summer school.  These programs helped him to learn new skills, have a structured routine, and develop friendships.

Nick at ESY Summer School…..

 

I Can Shine Bike Camp….

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Many of these programs are available for children with special needs throughout the U.S.  My son Nick had great experiences in participating in these programs.  If you know of a program you would like to share, please contact me.  I’m always updating my resource list on this website and sharing them with other support groups.  Here’s to a great summer 🙂

That’s what is in my noggin this week!

~Teresa 🙂

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Posted in Autism, Doctors and Dentists, Down syndrome

Blog #175~ Dentist Visits for Special Needs

Blog #175~Dentist Visits for Special Needs

teeth emoji

Taking a child with special needs to the dentist can be challenging.  It ranks right up there with hair cuts and blood draws at the medical lab.  My son Nick is 23 years old, and has Down syndrome and autism.  His speech deficits and sensory issues makes it difficult to get a proper dental examination and cleaning.  Now that Nick is an adult, we changed from a pediatric dentist to one that specializes in working with adults with special needs.  The experience for my son went very well, and here’s why it was successful.

Here are 5 tips to help with dentist visits for special needs:

*1- Find a dentist who specializes in working with persons having special needs.  Get referrals from other families and therapists.

*2- Request to schedule the appointment during the quiet time at the office.

*3- Create a social story either with a written checklist or pictures for your child to follow.  For a child with autism, if they can see it, then they can understand it.  This guide will be like a map to follow, and can help to lessen anxiety.

I printed a social story from Google Images and added a highly preferred reward of Taco Bell at the end of the visit:

dentist social story

At home we have a tooth brushing sequence laminated for Nick to follow.  You can print this PDF out for your child to use:  teeth

*4- The dentist should take the time to go at your child’s pace, based on their sensitivity and level of anxiousness.  His new dentist allotted plenty of time to ease into the exam, and for Nick to get comfortable with him.  Nick didn’t want to sit in the chair right away, even with my point prompts to the social story.  First, they put one of his favorite cartoons on the flat screen TV.  Then, the dentist put his gloved hands out for Nick to touch and get use to the feel and texture.  After a few minutes along with a several high-five and elbow bumps, Nick sat down in the chair.  He continued to narrow the gap of proximity, so that Nick was could get use to him being close.

On the first visit, the dentist was able to do brief examination and brush Nick’s teeth counting to 23 (his age) twice.  He took several breaks, giving lots of praise and elbow bumps.  We scheduled another visit three weeks later to try to build Nick’s tolerance level and continue to develop their relationship.  On the second visit, he was more at ease, sitting down in the chair right away.  The dentist completed a deeper examination, as Nick was able to tolerate even more this time.  He was able to clean, floss and even brush fluoride on Nick’s teeth!

Nick dentist two

*5- The key to having success on these visits was allowing time for Nick to feel more relaxed and establishing trust.  The dentist worked slowly to desensitize, picking up on any verbal or non-verbal cues.  He adjusted his pace accordingly, to match what my son could handle.  His dentist understood the importance of building this trust and relationship, thus earning the right to provide more clinical care.

The tips of *1-finding the right dentist, *2-scheduling appointments during off times, *3-providing a social story, *4-breaking down the examination slowly and *5-establishing a trusting relationship, all helped greatly to lead to successful dentist visits.

If your child has sensitivities, you may also want to see if they can tour the office before the appointment.  If need be, ask if the lighting can be adjusted and whether they offer the use of a weighted vest (which provides deep pressure which can be calming).  In some cases, it may be necessary to sedate a child that is uncooperative or needs more advanced care.

At this time with my son, we will continue to build on the solid foundation we’ve begun with his new dentist without the use of sedation for as long as possible.  These baby steps helped to lessen Nick’s anxiety for dental visits in the future.  I appreciate the time, care and concern for my son’s best interests in providing such a positive experience.  That’s what is in my noggin this week. 🙂

~Teresa

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

Nick~Spring Update

Nick~Spring Update

dandelion two

At last, spring has arrived in Chicago.  Here’s what Nick has been up to this spring at his adult day program.  My son is 23 years old and has Down syndrome and autism.  Each day he engages in a variety of activities at this program.

Nick continues to have both in-house and community vocational jobs.  These include stocking shelves at a local food pantry, stuffing church bulletins and cleaning at GiGi’s playhouse.  He recently got a paid job in-house, crushing and recycling cans.

nick-vacumme-gigis

Other community activities in Nick’s day program include visits to the library, shopping, and local parks.  In house, the adult day program has many enrichment activities such as art, work bins, cooking, fitness, and gardening.  They have taken the carrot and broccoli pods which were started indoors this winter, and planted them outside.  His group also bought and spread mulch on the outdoor beds.

In cooking, they’ve made shepherds pie, fruit pizza, hot dogs & sloppy joes with fries, and biscuits with gravy.  They have so much fun playing bingo and having holiday theme parties.  For St. Patrick’s Day they made shamrock shakes, and for Cinco de Mayo they made burrito bowls.  Recently, the moms were invited to his room for a Mother’s Day tea.  Nick was very excited to have me visit.

Mother's Day Tea

Outside of Nick’s adult day program, he keeps busy with his respite workers.  He enjoys going to local parks,  the library, movie theatre and restaurants.  He’s a regular at Culvers and CiCi’s Pizza each week.  We are very fortunate to have such dedicated caregivers with Lara, Jodi and Kelsey, who he loves very much.

I’ve painted a pretty and serene picture of Nick’s world this spring.  But it’s not all dainty flowers and colorful rainbows.  There are quite a few dandelions scattered in the mix.

dandelions

He continues to challenge us all with undesirable behaviors, like button pushing, throwing objects, blowing snot rockets and wiping them all over the place along with a lot of tapping and stimming.

Nick got a hold of a gargantuan tapper to stim on last week 🙂

Nick gargantuan tapper

There have been some milk thistles popping into the picture as well.  Last week he managed to add to his tally of fire alarm pulls, getting one at his day program.  So the alarm count stands today at 44 pulls.  OUCH!

milk thistle

The mix of cold weather and rain has led to some serious cabin fever this spring.  Here’s to warmer weather and getting my “one man wrecking crew” outdoors.  I’m grateful that Nick has a wonderful day program to go to, along with awesome respite workers that he loves.  He has a fulfilling life, and I get some peaceful time to myself.   Cheers to an abundance of flowers this spring, with fewer thorns.

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

~Teresa

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

Blog #173~ IEP’s and Advocating for Your Child

Blog #173~ IEP’s and Advocating for Your Child

IEP-Picture

It’s the merry month of May, or IEP season for parents who have a child with special needs.  How do you advocate to get what your child is entitled to?  IEP stands for Individualized Education Plan. The IDEA law, ensures that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.”

This purpose should drive the needs of your child, because it is neccessary for them to be prepared for further education, employment, and independent living”.  In the case of my son, Nick having Down syndrome and autism, he is unable to work and live independently.  However through the years, his IEP goals, and supports have focused on his abilities to do everything possible to work towards this purpose and what is realistic for him upon completion of school at age 22.

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So back to my first question….. How do you get what your child is entitled to?

There are three things that you can do as a parent to advocate for your child.  These include providing parent input, examine & evaluating your child’s current IEP, and building goals based upon your child’s strengths.

Parent input should include what you want to see your child doing towards the purpose of “preparing them for further education, employment and independent living”. 

*What academic goals can you put in place now that will drive them to be more independent in the future?

*How will your child interact with other peers and staff in social situations?

*How will your child do with social skills when out in public?

*What methods of communication will be used for your child to express themselves?

nick aac

The second way you can best advocate for your child is to evaluate their current IEP.  Take a hard look at each section including your child’s level of functioning, academic achievements, goals, special education & related services and accommodations.  The focus should be on what your child CAN do with measurable goals.  What supports and modifications are needed to assist your child?  Does your child need a visual schedule?  Is there any equipment or sensory related items that are needed to help with learning and navigating the building?  Will their be a shared or 1:1 aide provided for your child if they need additional support?

If your child is not making any progress on a goal, then it needs to be looked at.  For instance a goal of tying shoes may need more support and visuals from the occupational therapists.  Then again, is the goal of tying shoes going to be important in another 5 years, or can you make another accommodation, move on and work on a different goal?

shoelaces

Once you have re-evaluated your child’s current IEP, schedule a meeting with the support teacher/ case manager to review your findings and decide on what goals would be best for your child moving forward.  I would also suggest sending an email to the classroom teacher, therapists, and social worker to get their input on re-vamping the goals.  This should all be done at least a month before the scheduled IEP meeting.

Be sure and request the proposed draft of the new IEP, including all reports from each team members, along with the goals proposed for your review BEFORE the actual meeting.  This will insure that you are an informed member of the team, and be a vital part of the decision making process.

goals

Goals should always build upon their strengths.  My son was never interested in writing  Any marker or pen given to him ended up with scribbles all over his clothing and skin.  Nick was just not motivated by any goal to write.  But what he was really good at matching.  Many of his academic goals were driven by using supports that involved matching.  So instead of writing Nick, the support teacher made a worksheet where he would cut out the letters N-I-C-K and glue them under a template.  This allowed Nick to work on name recognition and cutting skills.  This is a great example of modifying the curriculum to suit the level of student functioning.

Another example is money handling skills.  Nick’s goal in elementary school was to work on the “dollar over” method.  If an item was $1.49, he would count out two dollars (one dollar + one more dollar for change back).

dollar bills

Later in high school, the goal was changed to using an ATM card (which is what most people use in society today).

Taking on the role of advocate for your child insures that they your child will get what they are entitled under the IDEA law.  Preparing yourself with vital parent input, examining & evaluating their current IEP, and working with the teacher to build goals that promote learning and independence will result in a solid education plan for your child, and their future success.  In closing I will add this last point, that your child’s IEP should be constructed on your child’s unique needs, and NOT what the school district says they can offer and afford.   That’s what is in my noggin this week.

~Teresa

IEP2

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Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

Blog #171~Rocking the Socks, and Helping Twice

Blog #171~Rocking the Socks, and Helping Twice

wehelptwo

The first part of rocking the funky socks campaign was to promote awareness on World Down Syndrome Day (WDSD), held each year on 3/21. The second part was for every pack that we sold, We Help Two donated a pair of warm, thermal socks which we donated to a local homeless shelter in our community.

My son Nick is 23 years old and has Down syndrome and autism.  The sock campaign raised $500.00 which we donated to Chicago based, The National Association for Down Syndrome, (NADS) http://www.nads.org.

world-down-syndrome-day

Last week, we took a full box of 59 pair of thermal socks donated by We Help Two, over to the Hesed House in Aurora, IL.  We Help Two partners with schools, organizations, individuals and non-profits to make twice the difference.

Nick Hessed House 2

 “The Hesed House is the second largest shelter in the State of Illinois, and the largest shelter outside of the city of Chicago. With the help of professional staff, alliances with outside agencies and 6,000 volunteers from 70 area churches, almost one thousand individuals (including 188 children) are served each year through Hesed House’s shelter and three housing programs. Hesed House sees 16 newly homeless individuals each week – that’s one new homeless individual every 8 1/2 hours. Hesed House strives to get 16 or 17 individuals out of homelessness each week.” 

hesed house logo

The Hesed House is not just a homeless shelter.  Besides providing shelter and supportive living, they also have employment training and education, along with medical assistance, counseling for substance abuse and mental illness, and offer state legal services.

Nick and I were pleased to pay it forward, with the donation of new thermal socks to Hesed House, courtesy of We Help Two.  For more information visit their website at http://www.wehelptwo.com.

Nick and Mom at Hessed House 2

A special thank you to Bethany from We Help Two, for reaching out to us for WDSD, to host a “Rock the Socks” campaign.  We Help Two is making a difference!   We were very happy to partner with them. Nick and I want to thank everyone who purchased and rocked the funky socks, and helped us make twice the difference.  That’s what is in my noggin this week! 🙂

~Teresa

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Posted in Down syndrome, Down Syndrome Awareness

We Rocked the Socks!

We Rocked the Socks!

rock your socks

Just three weeks ago, I started a campaign centered around World Down Syndrome Day to raise awareness and funds for The National Association for Down Syndrome (NADS), which is our local support group here in Chicago.  I was approached by We Help Two, which sells these funky socks online.  With each pack purchased, We Help Two donates 60% to NADS.  On top of this, We Help Two also donates a pair of thermal socks which Nick and I will be taking to our local homeless shelter.  My son Nick is 23 years old, he has Down syndrome and autism.

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We have exciting news to share.  After just three weeks in this campaign, we raised $513.00 for The National Association for Down Syndrome!  In addition, 57 people will receive warm socks at our local homeless shelter. 🙂 🙂 🙂

Look who’s rocking the socks……

Nick with his respite workers 🙂

nick jodi kelsey socks

Me rocking the socks……

Me funky socks

Nick’s Aunt and Uncle in Texas 🙂

scott and laura socks

Nick’s Dad with Hormel Food Service group…

Hormel funky socks

My fitness class buddies 🙂

studio one socks

Nick’s respite caregiver, Miss R rocking the socks….

Miss R socks

Nick’s brother and his girlfriend….

hank socks

There’s still a few days left if you would like to order your 3 pack of funky socks, for $15 plus S&H click here:

Order Funky Socks:  https://my.wehelptwo.com/campaign?reset=1&id=373

A special thanks to We Help Two for a WONDERFUL campaign. It was super easy to set online, and the socks are shipped and at your door in two days!  I highly recommend this company.  We Help Two partners with schools, organizations, individuals and non-profits to make twice the difference.  They are truly making a difference by raising funds for organizations, and giving back to the community, with thermal sock donations to local homeless shelters.  What an impact they make, by helping two ways!

wehelptwo

For more information about We Help Two follow on Facebook and click here https:// www.wehelptwo.com

I want to thank everyone for being a part of this campaign, rocking those socks and supporting Down syndrome awareness by purchasing socks and promoting World Down Syndrome Day on social media. Stay tuned for a future blog, when Nick and I take the thermal socks to our local homeless shelter.

That’s what is in my noggin this week!

~Teresa 🙂

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Posted in Down syndrome, Down Syndrome Awareness

World Down Syndrome Day

world-down-syndrome-day

World Down Syndrome Day (WDSD), observed on 21 March every year, is a global awareness day which has been officially observed by the United Nations since 2012.  On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome. Many of these events are recorded on the official World Down Syndrome Day website.  The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

DSAwarenessMagnet

WDSD 2017 Call to action is, #MyVoiceMyCommunity – Enabling people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community.  For more information visit: http://www.worlddownsyndromeday.org

My son Nick, is 23 years old and has Down syndrome and autism.  He participates fully in an adult day program, with enriching activities in the facility as well as the community, including volunteer jobs.

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We can all help to promote awareness on social media and spread a positive message for  people with Down syndrome.

Thank you to everyone who ordered funky socks from WeHelpTwo.  Our campaign helped to raise money for The National Association for Down Syndrome (NADS), http://www.nads.org, here in the Chicago area.  In addition, WeHelpTwo  is donating a pair of thermal socks for every pack we sold to our local homeless shelter.  The campaign ends at the end of this month.

warm-sock-photo

To order socks click here:  https://my.wehelptwo.com/campaign?=1&id=373

Nick and I can’t wait to see you all rock your funky socks, tomorrow.  Please post your pictures on our social media sites below!

Together, we can create a loud voice for better understanding, and advocating for rights, inclusion, and well-being for people having Down syndrome.  That’s what’s in my noggin this week.

wdsd2016

~Teresa 🙂

Follow Nick:

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#nickdsautism on Instagram

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Posted in Autism, Autism Safety and Wandering, Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Resources for Special Needs

Blog #168~ New Disability Identification Card

Blog #168~ New Disability Identification Card

This morning, I attended an event presented by Illinois State Representative, Stephanie Kifowit at the Aurora Police Department.   Last year, she sponsored legislation to create a disability awareness card.  Many individuals in our community live with special needs.  Often, their conditions can sometimes make it difficult to communicate in stressful situations.  This new disability wallet card was unveiled to foster better communication for individuals who struggle during these times.

State Representative Stephanie Kifowit….

FullSizeRender

This initiative was the idea of School Board President Lori Price, who is a parent of a child with Autism Spectrum Disorder. Persons with autism spectrum disorder and other disabilities may shut down, get nervous, panic or display inappropriate behaviors during high stress situations.  The disability awareness card is a tool, to help individuals quickly identify themselves to first responders and other public figures.   An individual can quickly show this wallet card, which will help to prevent a situation from escalating.

Face it, we all get nervous when being pulled over by a police officer.  Imagine what it must feel like for a person medically diagnosed with an intellectual, developmental or mental disability. This wallet card is different from the state ID card, as it contains the following…..

On this card, these conditions may present a person who:

*Appears deaf or unable to understand

*Has difficulty speaking or communicating

*Engages in repetitive or self-stimulating behaviors such as rocking or hand flapping.  

*Becomes agitated due to physical contact or stressful situations

*Acts indifferent or unresponsive

These conditions are stated on the card along with this statement:

“Please do not interpret my behavior as refusal to cooperate.  To better communicate with me, it can be helpful to speak slowly and clearly, repeat questions and allow time for responses.”

“If those techniques are unsuccessful, I request that you contact the person noted below on my behalf as he/she will confirm my diagnosis and provide information you may need about my identity or condition.”

These cards are free to individuals who have been approved by the Secretary of State’s office for an Illinois Person with a Disability ID card.  

For an application click here @https://www.cyberdriveillinois.com

I applaud State Representative Stephanie Kifowit for taking Lori Price’s idea for this simple card, that will improve communication and help de-escalate high stress situations.  This will assist law enforcement and first responders in keeping our loved ones safe.  Readers , please let me know if an identification card like this has been implemented, where you live.  If not, perhaps it’s time to champion this effort!

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

~Teresa

Who’s getting funky on World Down Syndrome Day, 3/21?

Deadline for ordering your funky socks for World Down Syndrome Day is this Thursday.  Support our campaign to help The National Association for Down Syndrome and our local homeless shelter by ordering and rocking your socks on, 3/21!  Click here to order: https://my.wehelptwo.com/campaign?reset=1&id=373

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Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

World Down Syndrome Day~ Rock Your Socks

funky-socks

World Down Syndrome Day~ Rock Your Socks

Mark your calendars for 3/21/17, that’s World Down Syndrome Day!

“World Down Syndrome Day is observed on March 21. On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome.”

world-down-syndrome-day

One of the trademarks of World Down Syndrome Day, is rocking your socks!  This year I have a partnership with We Help Two, to advocate,  raise money and awareness for Down syndrome.  It’s easy and fun way to help out by ordering some cool, funky socks. We Help Two, sent me sample packages of these socks.  They are really bright, fun and well made.

You can purchase these socks at $15.oo per 3-pack, and it will be mailed to you, using 2-day shipping.  A large portion of the proceeds from this campaign, will go directly to the National Association for Syndrome, (NADS) http://www.nads.org.

nads-logo

AND ON TOP OF THAT for every pack of funky socks sold, We Help Two will give a pair of warm, thermal socks to donate to our local homeless shelter.

warm-sock-photo

Help Nick and I knock the socks off World Down Syndrome Day by raising awareness, along with buying and wearing some funky socks.  You’ll be supporting NADS and helping the homeless.  That’s a win win for everyone!

To ORDER your FUNKY SOCKS click here:  

https://my.wehelptwo.com/campaign?reset=1&id=373

Hurry and order yours today, so you can rock your socks on 3/21 WDSD!  Thank you in advance for helping us, and spreading the word that Down syndrome rocks. That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

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Instagram #nickdsautism

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