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 Adult Day Programs for Special Needs, Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Autism Awareness Month: Final Thoughts

Autism Awareness Month: Final Thoughts

autism awareness 2016

April is Autism Awareness Month, and I’ve written all month how awareness is not enough. Individuals with autism and their families need understanding, acceptance and inclusion in society. Individuals on the autism spectrum (ASD) need various levels of support to become as independent as possible. This type of support can’t be provided without funding.

Here’s a sobering fact- “In the documentary, Autism: Coming of age it is reported that in the next 10 to 15 years, an estimated 800,000 children with autism will age out of the school system and transition into adulthood. Then, they will look to ill-prepared state and federal governments for the support services and resources to meet their many needs — a situation autism experts refer to as the “coming tsunami.

tsunami

Slapping an autism awareness ribbon on a car, isn’t enough anymore. Individuals with autism need various levels of support, and a person centered planning (PCP) to prepare for adult life.

person centered planning

“Wikipedia defines person-centered planning (PCP) as a set of approaches designed to assist an individual to plan their life and supports. It is most often used for life planning with people with learning and developmental disabilities, though recently it has been advocated as a method of planning personalized support with many other sections of society who find themselves disempowered by traditional methods of service delivery, including children, people with physical disabilities, people with mental health issues and older people. PCP is accepted as evidence based practice in many countries throughout the world.”

Person Centered Planning (PCP) is individualized. It can help identify opportunities for employment, community participation/enrichment activities and living arrangements for adult life.  PCP can be done with the school IEP team, to prepare the student for a bright future based on their strengths and needs.

Autism is not going anywhere, the wave is coming in hard. There is a staggering amount of families on waiting lists for state funding who are aging out of the school system. My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). He required a high level of support. Currently, Nick attends an adult developmental training program that is covered by funds through a state waiver. All across the country thousands of families are on long waiting lists, to seek such funds to support their child with autism and other intellectual and developmental disabilities. The conversation to advocate for individuals with autism must continue well past April before that tsunami wave hits the shore!

That’s what is in my noggin this week.

~Teresa

Follow Nick on Social Media:
Facebook and Pinterest @Down Syndrome With A Slice Of Autism Check 4/27 Facebook post to watch the documentary, Autism: Coming of Age
Instagram @nickdsautism
Twitter @tjunnerstall

 

 

 

 

 

 

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

100 Facts About Autism

100 Facts About Autism

autism did you know

April is Autism Awareness Month, but it’s much more than promoting awareness. Individuals with autism, their caregivers, and advocates want to encourage better understanding, inclusion and acceptance of autism spectrum disorder (ASD).

Here is a quick and easy read of 100 facts about autism, that you can finish in less than 10 minutes:

https://nickspecialneeds.com/2018/04/23/blog-203-100-facts-about-autism/

When we have a better understanding about autism, we can help to promote acceptance and inclusion for individuals with ASD. Much can be gained in our society when we begin to accept people for who they are, and understand and embrace their differences.

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son Nick (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, Autism Safety and Wandering, Dual Diagnosis Down syndrome and autism

Wandering and Autism: 7 Prevention Strategies

 Wandering and Autism: 7 Prevention Strategies

April is National Autism Awareness Month.  According to the National Autism Association, “Nearly half of children with autism engage in wandering behavior. Wandering occurs across all settings, under every type of adult supervision”.

Eloping picture and definition

There are safety precautions and prevention strategies families can put in place to secure a child that may run, bolt or wander.  I’ve had a few scares with my son over the years.  My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Nick has no concept of the danger, and he can be fast; so we are always on high alert both at home and in the community.

A few years back, I wrote a blog addressing elopement which includes 7 prevention strategies. Here is our story of a scary day when Nick went missing, and what we’ve put in place to avoid wandering since then.

Click to read 7 Prevention Strategies for Wandering and Autism: https://nickspecialneeds.com/2013/07/01/blog-60wandering-and-autism/

Wandering and autism

Wandering is a real risk for individuals with autism and other special needs. Putting a plan with prevention strategies in place at home, school and in the community can reduce the risk of your child to elope and provide security for you as a family.  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, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Autism Awareness Month,5 Ways You Can Help

Autism Awareness Month, 5 Ways You Can Help

autism awareness 2016

April is Autism Awareness Month, but it’s much more than promoting awareness.  Individuals with autism, their caregivers, and advocates want to encourage better understanding, inclusion and acceptance of autism spectrum disorder (ASD).

Here are 5 easy ways you can help promote awareness, understanding, inclusion and acceptance for individuals with autism:

https://nickspecialneeds.com/tag/autism-5-ways-you-can-help/

Each of us can do our part to help individuals with autism feel more welcomed in their communities. Much can be gained in our society, when we begin to accept people for who they are, and understand and embrace their differences.

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

~Teresa

Follow my son Nick (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, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

World Autism Day-April 2nd

World Autism Day- April 2nd

World-Autism-Awareness-Day_ss_323229098

On April 2nd, World Autism Awareness Day, we celebrate and recognize individuals on the autism spectrum, and promote fundraising and researching initiatives. In addition, this day is about promoting awareness and inclusivity for people with autism across the globe.

April is National Autism Awareness Month to promote autism awareness, understanding, acceptance and inclusion, drawing attention to the tens of thousands facing an autism diagnosis each year.

Click here to read more about World Autism Awareness Day and National Autism Awareness Month: 

https://nickspecialneeds.com/2018/04/02/world-autism-awareness-day/

World Autism Awareness Day and National Autism Awareness Month is a great time to advocate for understanding, acceptance and inclusion, it’s essential to advocate for children, and adults, with autism year-round.

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son Nick (DS-ASD):

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