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 ūüôā

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, Parenting Special Needs

Blog #166~ Lessons Learned on a Ski Slope

vail

Blog #166~ Lessons Learned on a Ski Slope

After a 27 year hiatus, I recently went on a¬†ski trip to Vail, Colorado.¬† My older son, Hank had never skied before so we opted to take a lesson together.¬† Our instructor Brad, offered up many¬†useful¬†tips to help us navigate the slopes. Many of the things that Brad pointed out, can¬†apply to raising a¬†child with special needs. ¬†My younger son, Nick is 22, and has Down syndrome and autism.¬† The daily challenges can weigh a parent down both physically and mentally.¬† That’s were the lessons I learned on a ski slope come in.

Lessons Learned on a Ski Slope…….

*If you point your ski’s too far uphill you are going to roll down…..

Over the years I’ve set goals for my son, Nick.¬† Many of these were aimed too high.¬† As a result, my expectations were not realistic, and Nick fell further back than I anticipated.¬† For example, during his elementary years Nick had a handwriting goal.¬† I was determined that he would be able to write his name and pushed hard¬†for several year to keep it in his IEP.¬† This goal was my dream, but¬†not Nick’s reality.¬† A pen or marker in Nick’s hands equals scribbling all over his skin and clothes.¬† I learned that you have to adjust your child’s goals to what is reasonable and attainable for them, and not for yourself.

*Don’t Fred Flintstone your feet…..

When you ski it’s important to shift the weight on your feet and apply the pressure at different points in order to make the turns.¬† If you dig in and “Fred Flintstone” your¬†feet, the skiing becomes rigid and doesn’t glide naturally.¬† There has to be room for some¬†give and take, when working with a child with special needs. It’s¬†unfair to¬†put pressure¬†on¬†your child to do everything you¬†want,¬†in a given day.¬† Sometimes you have to let that foot up and allow them to have room to understand, process, and do things in their own time. Take your foot off the brakes, otherwise, things will break down for your child.

fred-flintstone-feet

*Learn how to stop correctly…….

The day before our ski lesson, my son Hank went out with his Dad, Al, to try out skiing.  He came home very tired, cranky and discouraged due to going to fast, falling, and struggling to get back up.  During the ski lesson, he learned how to maneuver his body, and the proper ways to stop.  Afterwards, Hank had much more confidence and felt success.  If you push your child with special needs to do too much, they become frustrated as Hank did. This can lead to a risk of sensory  overload and potential meltdowns.  Recognize those signs of distress, and stop the activity before your child reaches a boiling point.

Hank and I with our ski instructor, Brad…..

vail-with-brad

*Relax and take in the scenery….

On the ski lift, our instructor Brad, encouraged me to put my ski’s up on the foot rest and relax.¬† He could sense that I was nervous about leaving the comfort of¬†the bunny slope.¬† He reminded me to breathe, look around, and take in the beautiful¬†scenery.¬† I think the same can be true in life with a child who has special needs.¬† The seamless schedule of doctor and therapy appointments, along with the pressure of working with them at home can get to be too much.¬†¬† Nick had¬†very low muscle tone, which is a trait of having¬†Down syndrome.¬† I was constantly providing stimulating activities and exercises to get him stronger so he could roll over, crawl, sit up and walk.¬† Beyond gross motor skills, there was work to be done with feeding, speech and fine motor skills.¬†The guilt of not feeling like you are doing enough for your child can burden a parent even more.¬† At some point,¬†you have to just relax and not beat yourself¬†up.¬† Take a breath and enjoy the beauty of your child for who they are.

My son, Nick……

nick-senior-alarm-pic

Skiing like many other sports offer lessons for us to learn in our lives.¬† That day on the slopes,¬† I was reminded about the importance of being flexible in what I expect from my son with Down syndrome and autism.¬† On the eve of his 23rd birthday, I reflect back¬†on how far¬†Nick has come.¬† I going to take a moment and breathe.¬† Like the backdrop of the blue sky against the snow covered Rocky Mountains,¬† I¬†just want to¬†take that¬†in. ¬†ūüôā¬†

That’s what is in my noggin this week.

~Teresa

happy-birthday-boys

Wishing¬†both Nick and his Dad,¬†Al a very¬†Happy Birthday this week¬†……

al-and-nick-vail

Follow Nick on Instagram @nickdsautism, on Facebook and Pinterest @Down syndrome with a Slice of Autism and Twitter #tjunnerstall

 

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan), Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #152~Lessons From Olympian Simone Biles

Blog #152~Lessons From Olympian Simone Biles

After winning individual gold in the women‚Äôs gymnastics all-around on Thursday, Simone Bile‚Äôs, in an interview, made a declaration. ‚ÄúI‚Äôm not the next Usain Bolt or Michael Phelps,‚ÄĚ she said. ‚ÄúI‚Äôm the first Simone Biles.‚ÄĚ

Simone Biles

Before going to teach spinning class last week, I was rushing around the house getting ready.  Out of the corner of my eye, I caught a glimpse of the Good Morning America interview featuring gold medalist, Simone Biles at the Rio 2016 Summer Olympics.  It struck me that this pint-sized, power house had 4 training tips that packed a lot of punch. I grabbed my coffee, pen and pad to jot down a few bullet points.

Having a child with special needs presents¬†many obstacles¬†in¬†life.¬† I‚Äôve had my share of them with my son Nick, for the past 22 years.¬† Nick has Down syndrome and autism.¬† The low muscle tone (a trait of having Down syndrome) delayed him from reaching gross motor milestones until much later than most babies.¬† He didn‚Äôt sit up until a year old, and he didn‚Äôt walk until he was 3 ¬Ĺ years old.¬† Nick had to work a lot harder to hit those targets with years of physical therapy.¬† We‚Äôve also spent 22 years going to speech and occupational therapy to help feeding, communication along with fine motor, sensory issues.

It has been quite a journey, which brings me back to those bullet points I scribbled down.  In the Good Morning America interview, Simone offered up some advice on her training regimen.  They are 4 simple lessons, and my take on they apply to raising a child with special needs:

  1. Enjoy the Ride

The journey isn’t always going to be easy.  It’s going to take a lot of hard work and shedding tears.  And that’s to be expected.  But, find a way to embrace the journey.  Have some fun as you go, and surround yourself with people who make you laugh.

  1. Never Give Up

There will be days, weeks and months where you see no progress.  Sometimes mistakes will be made.  That’s when you pick yourself up and trust that you can do it no matter what.

  1. Trust Your Squad

The fierce five huddled, cheered each other on, and believed in other.  When you have a child with special needs, you have to get a good squad together to help push them to succeed.  This includes the IEP team along with outside therapists.  Huddle in from time to time, and always keep the lines of communication open.  Make sure all the goals and dreams for your child are in sync.  Parents should have their own squad of friends and support groups you feel comfortable with.  Your squad understands the insurmountable pressure faced when raising a child with special needs.

Fab 5 Rio

4. Treat Yourself

After a competition, Simone (whether she wins or not) enjoys pepperoni pizza.  Parents of special needs kids spend a lot more time and energy helping their child reach goals.  It is beyond exhausting. Get a respite worker to watch your child.  Find the things that you enjoy and indulge.  Go out to lunch with girlfriends, get a manicure, go workout, take a trip to Target (alone), enjoy a nap, have a glass of wine.  Treat yourself, you deserve it.

That‚Äôs great advice from the¬†19-year-old¬†Olympian champion. ¬† Life will always have it ups and downs, twists and turns.¬† But if you can find a way to embrace the journey, you can hit the top of that podium and be the champion of your own life and your child’s.

Nick wins the gold for the softball throw at the State Special Olympics~2003

Nick Special Olympics

 

That’s what is in my noggin this week.

~Teresa

Follow Nick:

Facebook @Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

pintrest@Down Syndrome With A Slice Of Autism

twitter logo@tjunnerstall

 

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

Update~Nick’s World

Update~Nick’s World

I just got¬†back from a routine doctor’s appointment for Nick.¬† He completely enjoyed imitating the coughing and throat clearing sounds the gentlemen next to us¬†in the waiting room.¬† Since the morning has dwindled away, I am opting to give you and update on Nick’s world instead of pulling something out of my noggin to write.¬† Nick is 21 years old and has Down syndrome and autism.¬† Here’s a little slice of his world and what he’s been up to (besides imitating others hacking and sneezing)………

Nick attends a post-secondary transition program called STEPS.¬† His days are full of work jobs,¬† occupational and speech therapy, cooking,¬†community trips and other school-related activities.¬†¬†A big thank you¬†to Jodi, who took many of these pictures of Nick’s world.

Nick helps to make ice packs which he delivers to the schools in our district….

Nick delivery

Ding dong, ding dong, ding dong, guess who’s here?

Nick delivery 2

Community trip bowling…..

Nick bowling ramp

Sensory break time at school……

Nick relaxing.jpg

Dinner with his buddies at Ci Ci’s Pizza……

Nick Ci Ci's

Visit to WVHS Wrestling Team venue, he had to try on the headgear ūüôā

Nick Wrestling

Nick dancing in Miss R’s (respite worker) boots….

Nick Dancing

Nick the “winter ninja” relaxing at home…..

Nick Winter Ninja

As you can see, Nick¬†has a¬†very full life which he enjoys every day.¬† I have to thank his respite workers for¬†taking such good¬†care of him and getting him out into the community.¬† That’s a slice of Nick’s world and what’s in my noggin this week! ūüôā

~Teresa