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

Blog #232~Online Links for Special Needs Parents

Blog #232~Online Links for Special Needs Parents

Support hands

This week, I’ve provided a list of online links, to support special needs parents. These links are for parents of individuals with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities:

Down syndrome support links:

Down syndrome awareness ribbon

http://www.ndss.org The National Down Syndrome Society is the national advocate for the value, acceptance and inclusion of people with Down syndrome.

http://www.ndsccenter.org The country’s oldest national organization for people with Down syndrome, their families and the professionals who work with them.

http://www.nads.org NADS is the National Association for Down syndrome and a solid support group in the Chicago area. There is also more links for dual diagnosis of Down syndrome and autism here (including a complete list with signs and symptoms for parents wondering if their child has more than just Down syndrome).

http://www.gigiplayhouse.org Down syndrome Awareness Centers all over the Midwest and expanding to New York, NY and Mexico. These centers provide play, fitness and social groups.

http://www.noahsdad.com Support and inspiration for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused. Noah’s Dad has also launched Hope Story to raise awareness and provide additional support.

https://hopestory.org Hope Story – Down Syndrome Diagnosis Support and Resources exists to give support, encouragement and hope to parents whose child have received a Down syndrome diagnosis; to provide free resources to the medical community to help them deliver a Down syndrome diagnosis, and to find ways for parents of children born with Down syndrome to use their unique story to bring hope to others.

http://www.futureofdowns.com Run by parents of children with Down’s syndrome. Covers a wide range of topics regarding babies and children with Down’s syndrome, pregnant and in need of advice on screening and tests or have just received a positive diagnosis following an amnio or CVS.

Autism support links:

autism ribbon

http://www.facebook.com/autismdiscussionpage This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This site provides solid information and strategies related to autism.

http://www.autismspeaks.org Autism Speaks provides information and advocacy and good general information and links.

http://www.autism-society.org The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.

http://www.tacanow.org Talk About Curing Autism and has a ton of links and articles along with coffee groups.

http://www.myautismteam.com Online support group for parents to share daily trials, triumphs, questions and recommendations.

http://www.mayer-johnson.com Boardmaker software for assistive technology/AAC devices.

http://www.teeach.com Information on TEEACH materials

More links for special needs parents:

https://thearc.org The Arc: For People With Intellectual and Developmental- Information and referral services, individual advocacy to address education, employment, health care and other concerns, self-advocacy initiatives, residential support, family support, employment programs, leisure and recreational programs.

https://www.parentingspecialneeds.org Parenting Special Needs Magazine share information and inspiration for parents of children with special needs.

https://www.woodbinehouse.com/ Publisher of the Special-Needs Collection…books for parents, children, teachers, and other professionals.

http://www.pottytrainingsolutions.com Gathers the most common problems and their solutions to help take the stress out of this major milestone.

http://www.easterseals.com Easter Seals offers programs, training and equipment for families.

wwww.bridges4kids.org Great, practical resources for special needs families.

http://www.specialedadvocacy.org Advocacy site for parents and teachers

Down syndrome and autism links:

DS-ASD Ribbon

https://http://www.nickspecialneeds.com My site provides solid information on topics specific to a dual diagnosis of Down syndrome and autism (DS-ASD), including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

http://www.ds-asd-connection.org Offers good information related to a dual diagnosis of Down syndrome and autism.

http://www.theupsideofdowns.org Provides support, advocacy and information specific to a dual diagnosis of Down syndrome and autism.

Facebook groups for DS-ASD There are several Facebook groups directly related to Down syndrome and autism. These groups are a safe place to share information, ask questions, and help each other. Visit my Facebook page- Down Syndrome With a Slice of Autism. You can also type in Down syndrome and autism into the search box to access additional groups.

Online support groups and links provide information, assistance, resources and encouragement, for parents who have a child with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities. As a parent, remember you don’t have to navigate the special needs path alone, help is out there!

That’s what is in my noggin this week! 🙂
~Teresa

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Instagram @nickdsautism

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

Blog #231~Special Needs Tips for Making Accommodations in the Classroom

Blog #231 Special Needs Tips for Making Accommodations in the Classroom

Last week, I focused on 5 back to school tips for special needs parents. For today’s post I want to put a lens on what accommodations look like and their importance in the classroom setting for a student with special needs.

Accommodations are changes that remove barriers and provide a student with equal access to learning. As a parent, it is essential to make sure that agreed upon accommodations and supports are written into your child’s IEP, and in place before the first day of school.

My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years he had many accommodations to support his learning and navigation in the school environment. Nick didn’t walk until age 3 1/2 years old due to low muscle tone (a trait of having Down syndrome). In pre-school, the IEP team made an accommodation to transport Nick from point A to B in the building, and in/out of the car line.  Accommodations can come in many forms to support intellectual and developmental disabilities.

visual support ring

Here are some examples of accommodations that can be used in the classroom:

*Communication Notebook and daily reports sent back and forth from school to home

*Classroom Schedule,  Individual Visual Schedules and Social Stories

Nick fist bump AID                   social story working desk

*Alternative Media Tools- Flash cards, board games, computer programs, learning apps/games, AAC (augmentative and alternative communication) and assistive technology devices, PECS (picture exchange communication), sign language, etc.

nick aac

*Sensory Tools help with self-regulation- Figits, stress balls, pencil toppers, tangle puzzles, weighted vests or lap pads, nubby sit cushions, stability balls, etc.

alternative seating

*Motor Breaks and Sensory/Quiet Corners– Build breaks into a student’s schedule. Some can be motor breaks or a sensory/quiet break depending on the need. Equip with items such as rocking or bean bag chairs, mini-trampolines, swings, weighted blankets, noise cancelling earphones, need a break icon etc.

*Visual aids, worksheets and paraprofessionals/aides to assist to accompany lesson objectives and test taking.

*Transition tools- Early hall passing before the bell rings, transition objects, visual schedules, visual timers, etc.

transition timer

*Choice boards to encourage decision making and independent learning skills.

*Work and Reward Charts:

working for chart   first then work

Building in accommodations and supports into your student’s IEP and classroom setting help enhance learning in a positive school environment. Often, individuals with autism and a dual diagnosis of DS-ASD, like my son, thrive with the use of visual prompts to navigate their days more smoothly. The right accommodations make it possible to have a successful learning environment that is less stressful.

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, Education and Special Needs

Back to School Tips for Special Needs Parents

Back to School Tips for Special Needs Parents

Back to school helpful tips

It’s the time of year when parents get busy preparing their kids for the new school year. There is added stress and things to consider when you have a child who has intellectual and developmental disabilities. You can help your child by planning ahead, getting organized and putting visual supports in place before school starts.

Here are 5 tips to ensure a smooth start to the new school year for your child with special needs: https://nickspecialneeds.com/tag/haircuts-and-special-needs-child/

Navigating the new school year, which may include changes in staff, venues and classmates can be challenging. But with careful preparation, parents can guide their child to have a successful start, with less anxiety and more confidence!

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

~Teresa 

Follow Nick:

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Instagram @nickdsautism

Twitter @tjunnerstall

 

Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

DS-ASD Behavior Management

DS-ASD Behavior Management

smile emoji thumbs up

Behavior problems are common for individuals with a dual diagnosis of Down syndrome and autism (DS-ASD). Speech deficits may cause a child to exhibit unwanted behaviors to express emotions of frustration and not being heard. I’ve experienced many behaviors with my son Nick, who is 25 years old and has a dual diagnosis of DS-ASD. While Nick continues to challenge me with undesirable behaviors, I have learned a lot about how to better manage them. This week, here are 5 steps you can take to discover the causes of a problem behavior and prevent it from occurring.

Click here to learn how you can better manage behaviors associated with individuals having a dual diagnosis of DS-ASD:

https://nickspecialneeds.com/2018/08/06/blog-212ds-asd-behavior-management/

Challenging behaviors like throwing, dropping and breaking items are tough to deal with, but once you determine what function this behavior serves, you can put a plan in place to curtail it. A good BCBA certified behavior specialist can guide you through the process by doing a Functional Behavior Analysis (FBA) and creating a positive Behavior Support Plan (BSP). Getting on top of these behaviors will create a calmer and less frustrating living environment for the whole family.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram https://www.instagram.com/nickdsautism/

Twitter @tjunnerstall

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

DS-ASD~ Summer Vacation Highlights

DS-ASD~ Summer Vacation Highlights

OBX flags 2019

We are back after a two week vacation from Virginia and the Outer Banks, NC. It was so relaxing to be off the grid and enjoy time with family. My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a family, we have always made a commitment to travel with our son. It can be challenging for a child with special needs to navigate airports, hotels and unfamiliar venues. But there are things you can put in place to make vacations go smoother…..

In my last blog entry you can access my top 7 vacation travel tips for families: https://nickspecialneeds.com/2019/06/17/ds-asd7-vacation-tips-for-special-needs-families/ 

Here are some of the highlights from our summer vacation in Virginia and the Outer Banks (OBX):

In Virginia, we enjoyed the wonderful hospitality of Nick’s Aunt Ali and Uncle Ron with beautiful views, kayaking on the James River, great food and relaxing in the peaceful country…..

 

Highlights from the Outer Banks, in Duck, OBX:

At OBX we enjoyed beach and pool time, great company, delicious meals and a nice birthday celebration dinner on the sound side of OBX. Nick did well tolerating the sandy beaches this year, and spent more time than ever with us as a family!  We put Nick in tennis shoes to make his way out on the hot sand, with a texture that tends to bother him from a sensory standpoint. He did well hanging out both under the umbrella and out at the water’s edge……….

Nick and Dad OBX beach 2019   Nick and Anna OBX 2019

Dinner on the sound side of OBX at Aqua Restaurant and Spa, including Nick with his Dad & Mom, Uncle Ron & Aunt Ali, Cousins Anna & Sam and Nick’s brother and girlfriend Hank & Kristin…..

Aqua Restaurant and Spa features excellent food, wine, spa treatments and sunsets. Thank you both- to my son Hank for treating me to a pedicure overlooking the sound, and to Ali for the relaxing (and much needed) Swedish massage. As a mother of a child with special needs, it’s crucial to take time for some TLC and pamper yourself. Moving forward, I’m going to make it a priority to do this more than once a year on my birthday. It is good for the soul! 🙂

Sunrise at Duck, OBX….

OBX sunrise 2019

We are very grateful and blessed to have the opportunity to spend vacation each summer with Ali and Ron hosting in Virginia and OBX. Anna, thank you for cooking and introducing us to some wonderful & tasty vegan dishes. The familiar venues help Nick feel secure in his surroundings. This predictability helps him to be less anxious on vacations and makes for a more relaxing experience for all of us.

That’s what is in my noggin this week.

~Teresa 🙂

To see more pictures of the trip and Nick click below to follow on social media:

Instagramhttps://www.instagram.com/nickdsautism/

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Posted in Autism, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

DS-ASD~7 Vacation Tips for Special Needs Families

DS-ASD~7 Vacation Tips for Special Needs Families

My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). We’ve had our share of family vacations traveling across the country and overseas.  It’s not always easy and breezy, but with some planning and preparation, your vacation can be less stressful and fun for everyone.

7 Vacation Tips for Special Needs Families:

1. Prepare social stories and visual schedules including the mode of travel, and what is expected from your child. Review the vacation destination venue online with your child. This will give them an idea of where they will be going, and what they will be doing. Print pictures of the vacation venue to create a daily activity schedule. Visuals will provide a blueprint for your child to understand what will be happening, this will lessen their anxiety.

2. When booking accommodations, look for a comfortable and quiet retreat for your family. This may mean a separate living area from the rest of your family or friends in some cases.

3. Bring medications, snacks, comfort items and highly preferred toys/sensory objects in your carry on bag. In addition, it’s wise to pack an extra set of clothes for your child.

4. Plan short, flexible and open-ended adventures on your vacation. Build in time for breaks as needed.

5. Work in at least a few activities that your child will love.

6. Eating familiar foods will help your child feel more at home in a strange place. Check restaurant menus online beforehand, especially in the case of any food allergies or dietary restrictions. Don’t underestimate the importance of this. Once on vacation, we forgot to buy Ranch dressing, this lead to my son having a meltdown.

7. Don’t beat yourself up if things don’t go as planned. As much as you can, try to watch for the triggers that may cause your child to have a meltdown. See what you can do to cut these off at the pass before things escalate.

Vacations while fun, can be challenging for a child with special needs. Prepare in advance with comfort items, visuals, and look for possible triggers that may cause anxiety and discomfort for your child. Build in as much predictability as possible. Keep a relaxed and flexible attitude when approaching daily activities. It’s okay to cut things short, if it gets to be too much. Being prepared, planning ahead and staying flexible will help families have a smooth and enjoyable vacation this summer.

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

~Teresa

Follow Nick:

Instagram @nickdsautism

Facebook and Pinterest @Down Syndrome With a  Slice of Autism

Twitter @tjunnerstall

 

 

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