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

DS-ASD~Mom,Take Care of Yourself

DS-ASD~ Mom, Take Care of Yourself

It’s May and the school year is almost done. This month is busy, and parents get pulled in many directions. Being a mom of a special needs child for 25 years, I know first hand the guilt associated with not doing or being enough for my family. My son Nick is 25 and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years, I’ve learned how to cope with the stress and guilt, which can be debilitating. You are no good to your family if you don’t take care of yourself.

Mom quote first step

My advice to moms out there is this- Cut yourself some slack and take care of yourself.  Life is not perfect, none of us are; just let go of that notion. 

Here is a blog I wrote a couple of years ago with 3 tips on how to take care of yourself:

https://nickspecialneeds.com/2017/05/08/blog-174-momtake-care-of-yourself/

mom quote body, mind soul

You can’t pour from and empty cup, so remember to keep yours filled. Your family needs you at your best and you will have more to offer them. Make it a priority to carve out some time each day to take care of yourself.

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, IEP (Indivdualized Education Plan)

DS-ASD~IEP’s and Advocating for Your Child

Do you have an IEP coming up for your child? Are you currently having concerns about your child’s IEP? Click on the following link to learn how to advocate for your child and collaborate with the school IEP team more effectively:

https://nickspecialneeds.com/tag/parent-input-in-iep/

Parents are an equal and vital part of the IEP process and team. Remember you know your child the best. That’s what is in my noggin this week.

~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, Parenting Special Needs

Blog #230~Special Needs Moms, Advice from the Front Lines

Blog #230~Special Needs Moms, Advice from the Front Lines

autism war girl

I feel like I should be doing more.

My child isn’t reaching his IEP goals.

Will my child ever get toilet trained?

I’m not spending enough time with my other kids.

I can’t keep up, I’m exhausted.

Parenting a child with special needs brings on additional challenges and stress. As a mom of a special needs child for 25 years, I’ve had negative feelings of uncertainty, resentment, frustration, sadness, inadequacy and loneliness. Such feelings lead to the worst of all; guilt. We are only human, and it’s understandable to have those emotions as a mom.

mombie

My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism.  I  tried my best not to compare his growth and milestones to other children.   Nick had very low muscle tone, which is a trait associated with Down syndrome:

*He didn’t sit independently until well after age one.

*Nick didn’t walk or chew hard textured foods until he was 3 1/2 years old.

*Worst yet, he wasn’t independently toilet trained until age 13.

There were many times where those feelings of inadequacy and uncertainty creeped in over the years.  I questioned myself often, about what more I could do for my son. You try your best, but feel like you are coming up short.  I’ve been there many times, I get it! Take a breath and forgive yourself. There is no such thing as a perfect mom.

Nick, age 2 and his brother Hank age 4…….

AIOtmp (19)

So here is my advice from the frontlines.  First of all, remember that YOU ARE NOT ALONE. When you feel like you are alone, seek out a support system.  There are many  Down syndrome support groups across the country, online and on Facebook that are specific to the diagnosis of your child. Find that group of parents, going down a similar path as you are; they are the ones who “GET IT”.

sign support

When you feel lost, inadequate and overwhelmed, ask for help. Find the experts, and ask other parents, They will give you information and strategies to better equip  yourself to deal with the unique challenges of raising a child with special needs.

help button

Another struggle and dialogue that plays inside our heads as moms is, “But I don’t have time for me.”  Taking some “me time”, when the laundry is piled up, dishes to be washed and a myriad of other chores on the list, leads to feelings of guilt. But, it’s important to pull away, and re-charge your battery. Take time to do something you enjoy. Go have a cup of coffee or take a walk with a girlfriend, exercise, garden, go to Target and walk every aisle; do that thing  that will help restore you.

Pour Cup

Take care of yourself, Mom! When you feel overwhelmed find a support system, ask for help, and remember  it’s okay to disengage and recharge yourself. There is no such thing as being the perfect mother, so take it easy on yourself.  That’s my advice for special needs moms, on the front lines and what’s in my noggin this week.

Happy Mother’s Day 🙂

~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,How to Manage Throwing and Dropping Behaviors

DS-ASD, How to Manage Throwing and Dropping Behaviors

Over the weekend I read several posts on Facebook dual diagnosis of Down syndrome and autism (DS-ASD) groups.  Many parents were seeking help and guidance.  Their big question was- How to manage throwing and dropping behaviors?  My son Nick is 25 years old.  He has  a dual diagnosis of DS-ASD, and his fair share of these two behaviors.  Short of waving a magic wand, these undesirable behaviors can be curtailed with behavior management.

magic wand (2)

The first step is to determine what function the target behavior is serving.  When you can decipher what purpose the behavior has for a child, and when these occur, you and the IEP team can come up with a plan for behavior management. A behavior support plan (BSP) can outline strategies and replacement behaviors that are more suitable and desired both at school and home.

You can read more about how identify the function of behaviors and put a positive behavior support plan in place for dropping and throwing by clicking on the following link:

https://nickspecialneeds.wordpress.com/2012/04/17/blog-3-getting-your-goat/

This is one of the first blogs that I wrote back in 2012, that provides a blueprint on how we managed the throwing and dropping behaviors with my son, Nick. Blog #3~DS-ASD Getting your goat, still happens to be one of my favorites, to this day. 🙂

The current status of dropping and throwing behaviors with my son varies from day-to-day.  The function is still boredom and attention seeking and somewhat sensory related, when we as his parents, are busy around the house. Since 2012, Nick has more jobs around the house like recycling, unloading the dishwasher, vacuuming, and helping to roll the garbage and recycling bins to the  curb. Heavy work activities are part of a good sensory diet that are calming and organizing to the brain. I still have to remind myself not to let Nick get my goat.  But instead, I try my best to respond, and not react.  I highly recommend this great resource book, by David S. Stein, Psy. D., to learn more about behavior management:  

Book Supporting Positive Behavior DS

Behavior management can help decrease the incidences of negative behaviors such as throwing and dropping in children, teens and adults with a dual diagnosis of Down syndrome and autism (DS-ASD).  Collaborate with the IEP team and a certified BCBA therapist to do the detective work with a functional behavior assessment (FBA) that can lead to a positive behavior support plan (BSP).  Remember always try to respond and not react, when your child is trying to get your goat.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram #nickdsaustism

Twitter @tjunnerstall

 

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

World Down Syndrome Day: 3/21

World Down Syndrome Day: 3/21

On March 21st, World Down Syndrome Day (WDSD), we celebrate and raise awareness around the world of what Down syndrome is and the vital role people with Down syndrome play in our society.

World Down-Syndrome-Day

Trisomy 21, also known as Down syndrome occurs when there are 3 copies of chromosome 21. That is why WDSD is held on March 21st each year.  This day highlights the importance of promoting awareness, understanding, inclusion and acceptance for individuals with Down syndrome.

Read 3 easy ways you can help to promote WDSD:

https://nickspecialneeds.com/2018/03/19/blog-200world-down-syndrome-day/ 

Let’s celebrate the uniqueness of individuals with Down syndrome on 3/21 and everyday!  Don’t forget to rock your funky socks on Thursday. 🙂

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son 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

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:

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~Getting Additional Services and Support to Help Your Child

DS-ASD~Getting Additional Services and Support to Help Your Child

Are you a parent of a child with a dual diagnosis of Down syndrome and autism (DS-ASD)?  Or do you have a child that you suspect may have an additional diagnosis of autism along with Down syndrome?  My son, Nick is 25 years old and has a dual diagnosis of DS-ASD.  When we got the secondary diagnosis of autism, our son was able to receive additional support and services both in school and home.

This week, I want to share some of the additional services, support and resources that has helped us to navigate the dual diagnosis of DS-ASD with our son, Nick.

down syndrome and autism bracelet

Click on the following link to learn more: 

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

Navigating the path of a dual diagnosis of DS-ASD with your child has its challenges.  But there are many services, supports and resources that can enable parents and educators to help a child with DS-ASD.  Obtaining these services does take patience and tenacity, and it doesn’t happen overnight. (In fact, getting these services and supports took several years for us.)  But all of these tools will better equip you as a parent to take on the secondary diagnosis of autism, along with Down syndrome.

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

DS-ASD~Teaching Job and Functional Living Skills

DS-ASD~Teaching Job and Functional Living Skills

There are many jobs and functional living skills that can be taught to individuals who have a dual diagnosis of Down syndrome and autism (DS-ASD).  My son Nick is 25 years old and has several jobs both at home and in his adult developmental training day program.

Nick working at his day program….

Nick cleaning aid

Nick helping out at home…

Nick vacumme thanksgiving

One of the keys to unlocking your child’s potential, is to look at their interests and strengths.  Figure out what motivates them, and build jobs around those areas.  To read how to teach job and functional living skills click on the link below:

https://nickspecialneeds.com/2017/07/31/blog-179down-syndrome-and-autism-unlocking-your-childs-potential/

It’s never to early to start teaching job and functional living skills.  Start small and build around the interests and strengths of the individual.  Include lots of praise and rewards.  These skills will help to develop confidence and independence.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

nick-senior-alarm-pic

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, Fun Side of Nick

DS-ASD~Nick’s World Update

DS-ASD~Nick’s World Update

There are lots of cool things going on in Nick’s world right now.  My son, Nick just celebrated his 25th birthday last week.  He has a dual diagnosis of Down syndrome and autism (DS-ASD).

Nick and his Dad celebrating their birthdays….

 

A week earlier, Nick enjoyed dog sledding in Vail.  This was our second time to do this with Mountain Mushers, I highly recommend it.  I  wrote about our vacation last Monday.

If you missed last week’s blog about it, click here to read all about it: https://nickspecialneeds.com/?s=blog+%23229

Nick dog sled 2019

I am excited to share that, I’ve finished my memoir about the journey of raising Nick!  My editor just sent back revisions that will be keeping me busy.  So, for the next month or so, I will be highlighting some of my favorite, past blog posts.  I’ll plan on sharing both light-hearted and informative pieces.

This week, I am sharing Blog #100 which includes 20 tidbits about Nick.  Click here to read:

https://nickspecialneeds.com/2014/06/23/blog-10020-tidbits-about-nick/

That’s what is in my noggin this week.  Be sure and follow Nick on social media where you will find lots more pictures and videos of Nick’s world.  The links are listed below.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

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

Blog #229~DS-ASD Winter Update

Blog #229~DS-ASD Winter Update

Chicago winter 2019

This winter weather has been bitter and harsh, here in Chicago.  Fortunately, we missed the plummeting temperatures last week, while vacationing in Vail, Colorado.  My son, Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  Here’s an update on what Nick’s been up to this winter and the highlights of our trip to Vail.

The weather in Vail was mild, with temperatures in the 35-40 degree range and plenty of sunshine.  There is something to be said about sunlight and how it can elevate your mood.  The clear blue skies, warm sun, fresh air, and beautiful mountain views, can do wonders for the soul.

Vail sunset 2019

Nick enjoyed his time with our friends in Vail.  The village is always a fun place to visit.  Here’s Nick at lunch and with his Dad, Al :)…..

 

The highlight of the week, for Nick was dog sledding.  This is the second year we’ve done this with Mountain Mushers, who offer the best dog sledding rides in the Vail Valley.  Nick was happy to see his buddy, Cameron who was our dog sled musher last year.  He always gets such a kick seeing all the happy dogs, who bark with excitement as the sleds loaded up.

All bundled up in the sled and ready to go, and guess what, he actually kept his hat and gloves on this time.  Yay Nick! 🙂

 

The scenic trail was packed with alot more snow this year, making the ride faster. His favorite part is when the sled goes over the bumps and flies down the hills. Nick is a thrill seeker, who always signs “more” when a roller coaster ride is over.  He also loves the Disney movie Snow Dogs, so this was a perfect blend of his favorite things.  Towards the end of the ride, his Dad got to try his hand at mushing.  Check out the Facebook, Instagram and Twitter links below to see videos of them dog sledding in action all this week. 🙂 

Today it’s a balmy 50 degrees here in Chicago, and Nick has returned to his adult developmental training day program.  It’s hard to believe the turn around in temperatures……

Chicago temp difference

As I’ve mentioned in previous blog posts, Nick attends a day program that he truly enjoys.  The adult developmental training program curriculum includes functional and academic work activities, crafts, exercise, cooking, entertainment, and community outings.  The staff reports that Nick has so much potential and does awesome at the learning centers and work choices.  They have a lot of fun, especially over the holidays. Activities included a big Christmas lunch, wearing ugly sweaters, listening to a local high school choir and making wreaths, gingerbread houses and pillows.

Here’ s a no sew pillow that Nick made…..

nick pillow

If you look closely in the picture above, you might notice a stop icon on the dishwasher.  There are many of these stop signs on the start buttons around our house.  Individuals with a diagnosis of autism can benefit from the use of icons, to better guide their days.  Nick has a thing for pushing buttons and fire alarms.  His behavior support plan (BSP) addresses the fire alarm pulling.  Twice each day, the staff at his day program take him on a walk down the hallways.  They encourage and cue him to “keep walking” with “hands to self”.  Before these walks, the staff reads his social story that contains pictures of how to  navigate these hall walks.  Upon successful completion, Nick earns a reward.

Click on this link to learn more about the BSP and his social story: https://nickspecialneeds.com/tag/social-stories/

That wraps up Nick’s world and what he’s been up to this winter.  Navigating a dual diagnosis of  DS-ASD has it’s good and bad days.  Fortunately, the good days now outweigh the bad.  I think it’s both maturity on Nick’s part, along with the wisdom and understanding gained from being his parent.  Big guy has a milestone birthday coming up, I look forward to sharing more with you next Monday!  What is one thing that Nick has taught you over the past 24+ years?  I’d love to hear your feedback. 🙂

That’s what is in my noggin this week.

~Teresa 

Follow Nick on Social Media to see more pics and videos:

Nick head shot in vail

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism and more on dog sledding #mountainmushers

Twitter @tjunnerstall