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, 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 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, 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 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, Parenting Special Needs

Blog #227~Ditch the New Year’s Resolutions:Here’s a Better Idea

Blog #227~Ditch the New Year’s Resolutions: Here’s a Better Idea

How many times have you made a new year’s resolution and failed to reach it?

new-year-resolutions-825x549

New Year’s resolutions can be daunting and difficult to keep.  This year, I am changing  my tune.  I’ve adopted a new principle personally and for my son, Nick who is 24 years old, and has a dual diagnosis of Down syndrome and autism (DS-ASD).  As a fitness professional for 35 years, my job is to motivate, challenge and inspire my clients.  Being fit and healthy isn’t just about eating right and exercising.  To feel your best, you must take care of the mind, body and spirit collectively.  As a parent of a child with special needs, there are more demands, that can wear on you both physically and emotionally.  It is essential to take care of your physical and mental needs to reduce stress and avoid burning yourself out. Bottom line, it’s about self-care so that you can be the best version of yourself and your family!

mind body spirit

I was listening to a Sirius XM radio interview with Teddi Mellencamp (yes the daughter of John Mellencamp). Teddi is an accountability coach. She gave a better alternative, instead of making new year’s resolutions.  Teddi suggested that you pick 3 things each day that will take care of you personally, and hold yourself accountable.  Write them down, and try it for just 5 days.  These should be centered around helping you to feel better, both physically and emotionally.  By doing this, you begin to create good habits, that leads to confidence, and ultimately changing your lifestyle.

So, I tried it by writing down 2 things each day (3 seemed too much with my busy schedule).  Here are a few things I did:

*Cleaner eating- Replace Sun Chips with almonds and make a chicken wrap with only avocado and lettuce.

*Relax, stretch and be mindful of breathing to relax and calm the body,

*Bump up home workout weights from 10 to 12 pounds.

*Be mindful of the gratitude you receive throughout the day

*Eat an extra piece of fruit.

*Turn off the TV and listen to music I enjoy.

*Be more kind and smile at the people you pass and encounter each day.

*Drink one less cup of coffee and replace with more water.

*Go upstairs, every time I needed something, instead of waiting until things have accumulated.  (This increased my steps significantly).

*Apply one of the principles of Feng Shui.  De-clutter home and clean 8+ years of dust off the high cabinets to increase the flow of chi energy.

*Pray more throughout the day.

*Shop on the outer edges of the grocery store as much as possible. (This is where the nutrient dense, clean and less processed foods are located).

*Respond, and don’t react when I get angry.

*Meditate for 10 minutes.

I have to say, there is a feeling of personal accomplishment when you hold yourself accountable, and do just 2 things a day to promote personal health both physically and emotionally.

relax

My quick and easy tips to get back into fitness:

As a fitness professional, here’s what I suggest on how to start a new fitness program.  Don’t set yourself up for failure. Replace the resolution of going to go to the gym 5 days a week with a more reasonable goal. Change the mindset to, doing some physical activity 3-5 days a week.  If you can’t make it to the gym, or you are too tired, then get out and walk or tone with weights or an exer-tube for just 10 minutes.  Add an extra minute to each workout.  It will all add up, and you will build confidence and feel less guilty.  Break it down to smaller pieces and you will set yourself up for success! 🙂

My plan to work a little more with my son Nick, who has DS-ASD:

This got me thinking that maybe I should apply this principle with my son, Nick who has Down syndrome and autism.  Being a parent, we often feel like we are not doing enough to help our child learn and develop skills.  Housework, our jobs, time schedules/demands, and just plain exhaustion gets in our way, which leads to feelings of guilt.  So, I am going to just focus on one thing that will help my son be more independent each day.

I started yesterday, by encouraging Nick to use his AAC (Augmentative and Alternative Communication) device.  Nick successfully used it to request breakfast and lunch, along with a few other highly preferred rewards he enjoys.

Today, I will continue to focus on Nick using his AAC device by requesting foods and after dinner getting him to ask to take a shower.  These are little steps, but they can add up and enable my son to realize the power of using his voice, via his talker.  I have to constantly remind myself to be disciplined with not only myself, but with my son.  Ultimately, our goal as parents is to guide our children to be as independent as possible and in the process, help them gain more confidence as individuals. There are many jobs around the home that can help your child gain more skills. Nick helps by unloading the dishwasher/groceries, vacuuming, recycling, rolling out garbage cans to the curb, and helps me carry and load the laundry. All of these jobs help to organize and regulate his sensory needs. Just try one thing at a time and give lots of praise for successes!

Nick vacumme thanksgiving

My final takeaways for self-care for the new year:

*Say goodbye to New Year’s resolutions, that are often impossible to keep for 365 days, feels liberating.

*Shift the mindset to smaller goals is more realistic.

*Little changes add up to building healthy habits.

*A little self-care will help you feel better physically and emotionally each day.  Plus, it’s attainable and a more reasonable approach to making positive changes.

*Break things down into smaller pieces builds success and confidence.

Take a few minutes each day for self-care and let go of the feelings of guilt that you aren’t doing enough. Try working in small steps to help your child become more independent and build their skillset around the house. I would love to hear your ideas 2-3 things you might add to improve your mind, body and spirit each day!

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

Instagram #nickdsautism

Twitter @tjunnerstall