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

 

 

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