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

DS-ASD~Fall Update 2019

DS-ASD~Fall Update 2019

Happy first day of fall 🙂! Here is an update on my son, Nick who is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). My son attends an adult developmental training day program which he enjoys very much. The program has a nice variety of learning and enrichment activities incorporated throughout the day. Outside this program, Nick enjoys spending time with his personal support respite workers in the community going out to eat, movies, parks and other activities.

Some of the highlights of Nick’s day program are community trips, including shopping, visits to parks and local amusements along with going out to eat. In house, the curriculum includes learning centers, communication, functional living skills, recreation, music, movies, gardening, crafts, cooking, Friday fun days and other themes round out this program each week.

Here are a few pictures of Nick at his adult developmental training program:

nick sweeping keeler      Nick nature walk keeler     Nick visor keeler      Nick learning centers keeler

On 9/11 the clients at his program made thank you cards for local first responders. Here’s Nick giving cards to a police officer:

Nick and APD

Nick’s verbal skills are limited, due to having the additional diagnosis of autism and verbal apraxia of speech along with Down syndrome. He uses an Augmentative and Alternative (AAC) device and picture exchange system (PECS) to communicate his needs. There are two ways that I know that he likes going to his day program. Over the weekend, he packed his lunch and put it in his backpack, which he set by the front door. He also took the school icon out of his PECS book and puts it on a Velcro task strip and handed it to me. It’s nice to see how much he wants to go to this program. The routine and structure helps individuals with Down syndrome, autism and other intellectual and developmental disabilities navigate their days successfully.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick and see more pictures of him in action, along with other stories:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

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

Blog #232~Online Links for Special Needs Parents

Blog #232~Online Links for Special Needs Parents

Support hands

This week, I’ve provided a list of online links, to support special needs parents. These links are for parents of individuals with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities:

Down syndrome support links:

Down syndrome awareness ribbon

http://www.ndss.org The National Down Syndrome Society is the national advocate for the value, acceptance and inclusion of people with Down syndrome.

http://www.ndsccenter.org The country’s oldest national organization for people with Down syndrome, their families and the professionals who work with them.

http://www.nads.org NADS is the National Association for Down syndrome and a solid support group in the Chicago area. There is also more links for dual diagnosis of Down syndrome and autism here (including a complete list with signs and symptoms for parents wondering if their child has more than just Down syndrome).

http://www.gigiplayhouse.org Down syndrome Awareness Centers all over the Midwest and expanding to New York, NY and Mexico. These centers provide play, fitness and social groups.

http://www.noahsdad.com Support and inspiration for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused. Noah’s Dad has also launched Hope Story to raise awareness and provide additional support.

https://hopestory.org Hope Story – Down Syndrome Diagnosis Support and Resources exists to give support, encouragement and hope to parents whose child have received a Down syndrome diagnosis; to provide free resources to the medical community to help them deliver a Down syndrome diagnosis, and to find ways for parents of children born with Down syndrome to use their unique story to bring hope to others.

http://www.futureofdowns.com Run by parents of children with Down’s syndrome. Covers a wide range of topics regarding babies and children with Down’s syndrome, pregnant and in need of advice on screening and tests or have just received a positive diagnosis following an amnio or CVS.

Autism support links:

autism ribbon

http://www.facebook.com/autismdiscussionpage This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This site provides solid information and strategies related to autism.

http://www.autismspeaks.org Autism Speaks provides information and advocacy and good general information and links.

http://www.autism-society.org The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.

http://www.tacanow.org Talk About Curing Autism and has a ton of links and articles along with coffee groups.

http://www.myautismteam.com Online support group for parents to share daily trials, triumphs, questions and recommendations.

http://www.mayer-johnson.com Boardmaker software for assistive technology/AAC devices.

http://www.teeach.com Information on TEEACH materials

More links for special needs parents:

https://thearc.org The Arc: For People With Intellectual and Developmental- Information and referral services, individual advocacy to address education, employment, health care and other concerns, self-advocacy initiatives, residential support, family support, employment programs, leisure and recreational programs.

https://www.parentingspecialneeds.org Parenting Special Needs Magazine share information and inspiration for parents of children with special needs.

https://www.woodbinehouse.com/ Publisher of the Special-Needs Collection…books for parents, children, teachers, and other professionals.

http://www.pottytrainingsolutions.com Gathers the most common problems and their solutions to help take the stress out of this major milestone.

http://www.easterseals.com Easter Seals offers programs, training and equipment for families.

wwww.bridges4kids.org Great, practical resources for special needs families.

http://www.specialedadvocacy.org Advocacy site for parents and teachers

Down syndrome and autism links:

DS-ASD Ribbon

https://http://www.nickspecialneeds.com My site provides solid information on topics specific to a dual diagnosis of Down syndrome and autism (DS-ASD), including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

http://www.ds-asd-connection.org Offers good information related to a dual diagnosis of Down syndrome and autism.

http://www.theupsideofdowns.org Provides support, advocacy and information specific to a dual diagnosis of Down syndrome and autism.

Facebook groups for DS-ASD There are several Facebook groups directly related to Down syndrome and autism. These groups are a safe place to share information, ask questions, and help each other. Visit my Facebook page- Down Syndrome With a Slice of Autism. You can also type in Down syndrome and autism into the search box to access additional groups.

Online support groups and links provide information, assistance, resources and encouragement, for parents who have a child with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities. As a parent, remember you don’t have to navigate the special needs path alone, help is out there!

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

Follow us on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

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

Blog #231~Special Needs Tips for Making Accommodations in the Classroom

Blog #231 Special Needs Tips for Making Accommodations in the Classroom

Last week, I focused on 5 back to school tips for special needs parents. For today’s post I want to put a lens on what accommodations look like and their importance in the classroom setting for a student with special needs.

Accommodations are changes that remove barriers and provide a student with equal access to learning. As a parent, it is essential to make sure that agreed upon accommodations and supports are written into your child’s IEP, and in place before the first day of school.

My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years he had many accommodations to support his learning and navigation in the school environment. Nick didn’t walk until age 3 1/2 years old due to low muscle tone (a trait of having Down syndrome). In pre-school, the IEP team made an accommodation to transport Nick from point A to B in the building, and in/out of the car line.  Accommodations can come in many forms to support intellectual and developmental disabilities.

visual support ring

Here are some examples of accommodations that can be used in the classroom:

*Communication Notebook and daily reports sent back and forth from school to home

*Classroom Schedule,  Individual Visual Schedules and Social Stories

Nick fist bump AID                   social story working desk

*Alternative Media Tools- Flash cards, board games, computer programs, learning apps/games, AAC (augmentative and alternative communication) and assistive technology devices, PECS (picture exchange communication), sign language, etc.

nick aac

*Sensory Tools help with self-regulation- Figits, stress balls, pencil toppers, tangle puzzles, weighted vests or lap pads, nubby sit cushions, stability balls, etc.

alternative seating

*Motor Breaks and Sensory/Quiet Corners– Build breaks into a student’s schedule. Some can be motor breaks or a sensory/quiet break depending on the need. Equip with items such as rocking or bean bag chairs, mini-trampolines, swings, weighted blankets, noise cancelling earphones, need a break icon etc.

*Visual aids, worksheets and paraprofessionals/aides to assist to accompany lesson objectives and test taking.

*Transition tools- Early hall passing before the bell rings, transition objects, visual schedules, visual timers, etc.

transition timer

*Choice boards to encourage decision making and independent learning skills.

*Work and Reward Charts:

working for chart   first then work

Building in accommodations and supports into your student’s IEP and classroom setting help enhance learning in a positive school environment. Often, individuals with autism and a dual diagnosis of DS-ASD, like my son, thrive with the use of visual prompts to navigate their days more smoothly. The right accommodations make it possible to have a successful learning environment that is less stressful.

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

~Teresa 

Follow Nick:

Facebook and Pinterest @Down syndrome With a Slice of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

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

Back to School Tips for Special Needs Parents

Back to School Tips for Special Needs Parents

Back to school helpful tips

It’s the time of year when parents get busy preparing their kids for the new school year. There is added stress and things to consider when you have a child who has intellectual and developmental disabilities. You can help your child by planning ahead, getting organized and putting visual supports in place before school starts.

Here are 5 tips to ensure a smooth start to the new school year for your child with special needs: https://nickspecialneeds.com/tag/haircuts-and-special-needs-child/

Navigating the new school year, which may include changes in staff, venues and classmates can be challenging. But with careful preparation, parents can guide their child to have a successful start, with less anxiety and more confidence!

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

~Teresa 

Follow Nick:

Facebook and Pinterest- Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

DS-ASD~What To Do When It’s More Than Just Down Syndrome

DS-ASD~ What To Do When It’s More Than Just Down Syndrome

If you are a parent, teacher, caregiver of extended family member of an individual who has Down syndrome, you are aware of how challenging it is to hit those developmental milestones. There are even more speech deficits, sensory integration problems and challenging behaviors associated with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 25 years old and has DS-ASD. Years ago we suspected that his behaviors and speech delays were perhaps more than just Down syndrome. We got a clinical, medical evaluation to determine that he also had autism. Getting the secondary diagnosis enabled us to receive additional services and support.

DS-ASD Ribbon

Additional Services and Support for DS-ASD:

Speech and Augmentative Alternative Communication

Behavior Support Plan (BSP) and Applied Behavior Analysis (ABA)

Specialized Training for Toileting

Federal and State Funding for Respite Care and Equipment

Support Groups for DS-ASD families online and on Facebook

Besides the additional services and support, we got validation that our son’s challenging behaviors and speech deficits were more than just Down syndrome. This gave us a peace of mind as a family, that we were no longer alone on this new path.

To read more about additional services, support and links related to a dual diagnosis of Down syndrome and autism (DS-ASD) click here:

https://nickspecialneeds.com/2016/09/12/blog-155more-than-just-down-syndrome/

Getting the secondary diagnosis of autism opened up new avenues for our son to get help with communication and tackle the unique behaviors that hindered his progress both at home and school. This made a huge difference in all aspects of his life and ours. It’s a very different path than just Down syndrome, but with support your child and family can navigate it more smoothly.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

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

DS-ASD Behavior Management

DS-ASD Behavior Management

smile emoji thumbs up

Behavior problems are common for individuals with a dual diagnosis of Down syndrome and autism (DS-ASD). Speech deficits may cause a child to exhibit unwanted behaviors to express emotions of frustration and not being heard. I’ve experienced many behaviors with my son Nick, who is 25 years old and has a dual diagnosis of DS-ASD. While Nick continues to challenge me with undesirable behaviors, I have learned a lot about how to better manage them. This week, here are 5 steps you can take to discover the causes of a problem behavior and prevent it from occurring.

Click here to learn how you can better manage behaviors associated with individuals having a dual diagnosis of DS-ASD:

https://nickspecialneeds.com/2018/08/06/blog-212ds-asd-behavior-management/

Challenging behaviors like throwing, dropping and breaking items are tough to deal with, but once you determine what function this behavior serves, you can put a plan in place to curtail it. A good BCBA certified behavior specialist can guide you through the process by doing a Functional Behavior Analysis (FBA) and creating a positive Behavior Support Plan (BSP). Getting on top of these behaviors will create a calmer and less frustrating living environment for the whole family.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram https://www.instagram.com/nickdsautism/

Twitter @tjunnerstall

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

DS-ASD~ Summer Vacation Highlights

DS-ASD~ Summer Vacation Highlights

OBX flags 2019

We are back after a two week vacation from Virginia and the Outer Banks, NC. It was so relaxing to be off the grid and enjoy time with family. My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a family, we have always made a commitment to travel with our son. It can be challenging for a child with special needs to navigate airports, hotels and unfamiliar venues. But there are things you can put in place to make vacations go smoother…..

In my last blog entry you can access my top 7 vacation travel tips for families: https://nickspecialneeds.com/2019/06/17/ds-asd7-vacation-tips-for-special-needs-families/ 

Here are some of the highlights from our summer vacation in Virginia and the Outer Banks (OBX):

In Virginia, we enjoyed the wonderful hospitality of Nick’s Aunt Ali and Uncle Ron with beautiful views, kayaking on the James River, great food and relaxing in the peaceful country…..

 

Highlights from the Outer Banks, in Duck, OBX:

At OBX we enjoyed beach and pool time, great company, delicious meals and a nice birthday celebration dinner on the sound side of OBX. Nick did well tolerating the sandy beaches this year, and spent more time than ever with us as a family!  We put Nick in tennis shoes to make his way out on the hot sand, with a texture that tends to bother him from a sensory standpoint. He did well hanging out both under the umbrella and out at the water’s edge……….

Nick and Dad OBX beach 2019   Nick and Anna OBX 2019

Dinner on the sound side of OBX at Aqua Restaurant and Spa, including Nick with his Dad & Mom, Uncle Ron & Aunt Ali, Cousins Anna & Sam and Nick’s brother and girlfriend Hank & Kristin…..

Aqua Restaurant and Spa features excellent food, wine, spa treatments and sunsets. Thank you both- to my son Hank for treating me to a pedicure overlooking the sound, and to Ali for the relaxing (and much needed) Swedish massage. As a mother of a child with special needs, it’s crucial to take time for some TLC and pamper yourself. Moving forward, I’m going to make it a priority to do this more than once a year on my birthday. It is good for the soul! 🙂

Sunrise at Duck, OBX….

OBX sunrise 2019

We are very grateful and blessed to have the opportunity to spend vacation each summer with Ali and Ron hosting in Virginia and OBX. Anna, thank you for cooking and introducing us to some wonderful & tasty vegan dishes. The familiar venues help Nick feel secure in his surroundings. This predictability helps him to be less anxious on vacations and makes for a more relaxing experience for all of us.

That’s what is in my noggin this week.

~Teresa 🙂

To see more pictures of the trip and Nick click below to follow on social media:

Instagramhttps://www.instagram.com/nickdsautism/

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

DS-ASD~7 Vacation Tips for Special Needs Families

DS-ASD~7 Vacation Tips for Special Needs Families

My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). We’ve had our share of family vacations traveling across the country and overseas.  It’s not always easy and breezy, but with some planning and preparation, your vacation can be less stressful and fun for everyone.

7 Vacation Tips for Special Needs Families:

1. Prepare social stories and visual schedules including the mode of travel, and what is expected from your child. Review the vacation destination venue online with your child. This will give them an idea of where they will be going, and what they will be doing. Print pictures of the vacation venue to create a daily activity schedule. Visuals will provide a blueprint for your child to understand what will be happening, this will lessen their anxiety.

2. When booking accommodations, look for a comfortable and quiet retreat for your family. This may mean a separate living area from the rest of your family or friends in some cases.

3. Bring medications, snacks, comfort items and highly preferred toys/sensory objects in your carry on bag. In addition, it’s wise to pack an extra set of clothes for your child.

4. Plan short, flexible and open-ended adventures on your vacation. Build in time for breaks as needed.

5. Work in at least a few activities that your child will love.

6. Eating familiar foods will help your child feel more at home in a strange place. Check restaurant menus online beforehand, especially in the case of any food allergies or dietary restrictions. Don’t underestimate the importance of this. Once on vacation, we forgot to buy Ranch dressing, this lead to my son having a meltdown.

7. Don’t beat yourself up if things don’t go as planned. As much as you can, try to watch for the triggers that may cause your child to have a meltdown. See what you can do to cut these off at the pass before things escalate.

Vacations while fun, can be challenging for a child with special needs. Prepare in advance with comfort items, visuals, and look for possible triggers that may cause anxiety and discomfort for your child. Build in as much predictability as possible. Keep a relaxed and flexible attitude when approaching daily activities. It’s okay to cut things short, if it gets to be too much. Being prepared, planning ahead and staying flexible will help families have a smooth and enjoyable vacation this summer.

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

~Teresa

Follow Nick:

Instagram @nickdsautism

Facebook and Pinterest @Down Syndrome With a  Slice of Autism

Twitter @tjunnerstall

 

 

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

Special Needs Books and Resources from a Father’s Perspective

Special Needs Books and Resources from a Father’s Perspective

Father’s Day is this Sunday. Here is a list of books and resources from a father’s perspective. Click here to view:

https://nickspecialneeds.com/?s=blog+%23147

Wishing all the Dads out there a very Happy Father’s Day!

~Teresa 🙂

Follow my son Nick, age 25 with a dual diagnosis of Down syndrome and autism (DS-ASD):

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs, Resources for Special Needs

Special Needs Summer Program Ideas

Special Needs Summer Program Ideas

This week, I’ve provided a list of some summer program ideas and links for children with special needs. My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years he has participated in a variety of programs.  Here is a blog I wrote a couple of years ago, highlighting some great programs for individuals with special needs:

Click here to view:
https://nickspecialneeds.com/2017/06/12/blog-176-special-needs-summer-recreation-programs/

Honesty, I was uncertain about attempting some of the programs, given Nick’s dual diagnosis of DS-ASD. It’s important to at least try new things and keep expanding your child’s horizons. As the saying goes, “you never know, until you try it”. That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall