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

Blog #172~ Autism:5 Ways You Can Help

Blog #172~ Autism: 5 Ways You Can Help

The aim of Autism Awareness Month, is to educate the public about autism.  How do you react when you see or meet a person that has autism?  Autism is a complex mental condition and developmental disability, characterized by difficulties in the way a person communicates and interacts with other people.  People with autism are classed as having Autism Spectrum Disorder (ASD) and the terms autism and ASD are often used interchangeably. A wide spectrum disorder, people will autism have set of symptoms unique to themselves; no two people are the same.

autism awareness 2016

My son Nick is 23 years old and has a dual diagnosis of Down syndrome and autism (DS -ASD). During the month of April, I want to touch on autism awareness and acceptance.  Since the aim this month is to educate the public about autism, I would like to challenge you to open your mind and heart to individuals with autism, along with their families and caregivers.

photo (26)

Here are 5 easy things you can do to show acceptance and support for autism:

*Open your heart, give a smile to a family struggling out in public with a child or adult who has autism. Offer up good thoughts and prayers , for compassion, strength, patience and tolerance.

*Reach out, pay a compliment or offer help, to a family who might be dealing with a difficult situation with their child.  “You have a lovely family.” “You are a wonderful parent, I admire your patience.”  If you encounter a family going through a tough time, such as a meltdown, or if the child is shutting down, ask them “What can I do to help?”

*Be a friend, make a phone call to check in, set up a coffee or lunch date, or offer to help out with carpooling or running an errand.  Bring a bottle of wine or a Starbucks latte, over and chat.  Many parents may not get a chance to speak to other adults on a daily basis and often feel isolated.

*Teach your child about inclusivity.  Invite a classmate with autism, over for a play date or to your child’s birthday party.  Show that they are genuinely welcome, even if their child can only tolerate a short time.  Look into inclusion opportunities for your child at school like lunch buddy or peer partner programs and volunteering for Special Olympics.  These are all ways to teach your child to be kind and compassionate.

It’s great to see that Sesame Street just added a new muppet, Julia who has autism!

Julia Sesame Street

*Stand up and advocate, if you overhear someone saying something inconsiderate about autism or any other disability, speak up. Some people may not understand the unusual behaviors exhibited by individuals with autism. Some of these behaviors are sensory related. For example rocking and hand flapping is a coping mechanism that helps organize the brain.  Some individuals with autism become overwhelmed in stimulating environments. This may lead to a person shutting down or having a meltdown. Better understanding of such behaviors and their causes, leads to  You can help advocate by sharing information about autism on your social media.

Awareness and acceptance means allowing yourself and teaching others to be open, compassionate and kind.  Acceptance is not about tolerating others that are different from you.  It is about valuing our differences as human beings, and seeing the heart and strengths that lies in each of us.  That’s what is in my noggin during Autism Awareness Month.

~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

Blog #169~ I’m Very Aware of Autism and More

Blog #169~ I’m Very Aware of Autism and More

autism ribbon

April is “Autism Awareness Month” – a time to promote awareness, acceptance and attention to those people who are diagnosed as being on the autism spectrum.

Yes, I’m very aware of autism, and more.  So is anyone, who has been around my son.  Nick is 23 years old, and has dual diagnosis of Down syndrome and autism, (DS-ASD).  He does a good job spreading awareness wherever he goes. 🙂  Honestly, it’s hard for me to get on board with the “Light it Up Blue” campaign.  Why is that?  Because my son doesn’t fit in with any of the support groups for autism, due to his is lack of speech, cognitive and developmental delays.

“Autism or Autism Spectrum Disorder (ASD), is a serious neurodevelopmental disorder that impairs a child’s ability to communicate and interact with others. It also includes restricted repetitive behaviors, interests and activities. These issues cause significant impairment in social, occupational and other areas of functioning.”

autism awareness 2016

Since my son has a dual diagnosis of DS-ASD, I’m going to put my focus on this area.  According to The National Down Syndrome Society (NDSS) http://www.ndss.org:

“Children who have ASD may or may not exhibit all of these characteristics at any one time nor will they consistently demonstrate their abilities across similar circumstances. Some of the variable characteristics of ASD we have commonly observed in children with DS-ASD include:

  • Unusual response to sensations (especially sounds, lights, touch or pain)
  • Food refusal (preferred textures or tastes)
  • Unusual play with toys and other objects
  • Difficulty with changes in routine or familiar surroundings
  • Little or no meaningful communication
  • Disruptive behaviors (aggression, throwing tantrums, or extreme non-compliance)
  • Hyperactivity, short attention, and impulsivity
  • Self-injurious behavior (skin picking, head hitting or banging, eye-poking, or biting)
  • Sleep disturbances
  • History of developmental regression (esp. language and social skills)”

NDSS_logo

My son Nick, certainly hits most of the bullet points listed above.  It’s a unique mix having a child with a dual diagnosis of DS-ASD.  For many years, I felt isolated from the local DS support group because my child had many of those characteristics.  Eventually, I was put in contact with a small group of parents that also had children with DS-ASD.  This was a group within The National Association for Down Syndrome (NADS), here is Chicago.  Finding this group, made all the difference.  These parents were in the same boat, sharing similar experiences, struggles, and yes funny stories, that I could relate to.  In addition to local support groups, there are many online groups for DS-ASD on Facebook.

photo (26)

During Autism Awareness Month, I would like to see the government and media focus   on more educational, behavioral supports and other treatment options.  What is going to happen to our kids when they age out of the school system?  There aren’t near enough employment opportunities, day programs or group homes for this rapidly growing population.  In addition, I’d like there to be an easier path to obtain funding through the government.

understanding

For the month of April, parents of a child with autism, or a dual diagnosis of DS-ASD, need understanding and support. Do you know a parent with a child who has autism?  Consider lending someone a hand, so they can run an errand.   We also need more compassion, and less judgment when we are out in public with our child.   And many of us, could use a good night’s sleep.

autism and sleep cartoon

You can also help by sharing information and stories, to raise awareness on social media. A better informed public will be more empathetic and supportive towards people with autism and a dual diagnosis of Down syndrome and autism.

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 Safety and Wandering, Down syndrome

Blog #142~Elopement and Autism

Blog #142~Elopement and Autism

Have you ever lost your child?  It’s the worst feeling ever.  April is Autism Awareness Month, it is essential to put supports in place to prevent your child from wandering off.

autism elopement

My son Nick is 22 years old and has Down syndrome and autism.  There have been a few times where he has taken off.  Since then, I have put supports in place and done some research on more precautions to take.  I found an excellent website called AWAARE which stands for Autism Wandering Awareness Alerts Response Educationwww.awaare.org.  This site has a comprehensive list of tips, materials and tools.  Take action now to protect your child…….

Secure your home

Install secure deadbolts, home security systems, install inexpensive battery operated alarms on door and window to alert when opened. Place hook and eye locks on all doors above your child’s reach.  Fence in the yard and put visuals like stop signs to doors.

photo (115)

Consider an ID Bracelet

Medic Alert, www.medicalert.org  is what Nick wears and it stays on him firm.  Another popular bracelet is called Project Lifesaver, http://www.projectlifesaver.org

photo (116)

Teach your child to swim

A large percentage of the headlines for wandering and autism end tragically because of drowning deaths.  Check your local YMCA or special recreation association for swim lessons.

autism missing pic

 

Alert your neighbors

Make a simple handout with your name, address, phone number, information about your child (autism, non-verbal etc….) and include a photograph of your child.   Ask them to call you immediately if they see your child outside of your home.

Alert First Responders

Provide the local police and fire stations with key information before an incident occurs.  See the AWAARE website given above for printable handouts.  There is also a free Big Red Safety Toolkit with free downloads on wandering and prevention.

Consider A Monitoring App

*iPhone Baby Monitor App

*Kids ID App

*KidStatz App

kids id phone app

Consider a GPS Locater Tracking Device:

Project Lifesaver (https://www.projectlivesaver.ort)

Lo Jack Safety Net (https://www.safetynetbylojack.com)

These locaters range from $125.00-$250.00; monthly monitoring fees vary:

*Angel Sense GPS Device (https://www.angelsense.com)

*Amber Alert GPS (https://www.amberalertgps.com)

*Trax Personal GPS Tracker (https://www.traxfamily.com)

Being prepared and proactive is vital for a child who is an eloper and may bolt at anytime.  It will also help you as a parent to feel more confident in the safety of your child.  That’s what is in my noggin this week!

~Teresa

Follow Nick:

Facebook

pintrest@Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

 

 

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

April is Autism Awareness Month

April is Autism Awareness Month

autism awareness 2016

April is “Autism Awareness Month“.  I am quite aware of autism every day of the year.  My son Nick, is 22.  He has Down syndrome and autism.  He requires constant supervision 24/7, 365 days of the year.  There is some funding through the state which helps pay for his adult day program and respite care.  In addition, he receives Supplemental Security Income monthly.  But this doesn’t come close to covering the costs. Autism is the fastest growing developmental disorder, yet most under funded.

Putting a ribbon on the car bumper is not going to do enough to help families living with autism.

autism ribbon

My hope is for more acceptance, compassion, research, funding and programs to support families living with autism.  And, we need more “family” bathrooms to be accessible in public facilities.  Nick can’t go into the men’s rest room by himself.  It would not be safe for him to go alone.  Not to mention that he would flush the toilet repeatedly, then run every single faucet full blast.

Autism statistics in 2000 were 1 in 150.  By 2010 it was 1 in 68.  Autism is not going anywhere.  In fact, people with autism are growing up and aging out of the school system like my son, Nick.  Families with autism need more support.  We can’t do it alone.  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

 

 

 

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Education and Special Needs, Tech Stuff/Apps and Video Based Instruction

Blog #125~Success Stories with the AAC Talker Device

Blog #125~Success Stories with the AAC Talker Device

Nick has been using his new talker for about 5 months now. People with severe speech or language problems often use an AAC (Augmentative and Alternative Communication) to supplement existing speech or replace speech that is not functional. In addition, picture symbols called PECS (Picture Exchange System) and sign language are used to help individuals express themselves.

Nick’s PECS Book…..

IMG01 (13)

During the spring, the staff at Nick’s school along with his private speech therapists met to look at what type of device would work best for him to communicate. Nick is 21 years old and has Down syndrome and autism. A series of 3 meetings were held to address the student’s abilities, gather data and consider options for appropriate inclusive technology products. This process is called the SETT Framework. SETT is an acronym for Student, Environment, Tasks and Tools. To read more about this process go to the archives and read Blog #113~Ready, SETT, Go and Blog #116~A New Talker for Nick.

Since the SETT meetings, Nick has been using an iPad with and iAdapter case. The program installed is called, Touch Chat. The initial update I gave on this device is in the archives posted on 5/18/15.   We had a few goals in mind. One was to be able to request items like food, movies, music, going out into the community. Secondly we wanted Nick to use the talker to gain attention appropriately. Finally, we hoped that Nick would be able to express his feelings (happy, angry, and frustrated).

Nick has been requesting food items very well along with items of interest to him like tennis balls, sprite, music, people he wants to see, tired etc.. on a consistent basis. In addition, he has been using it to gain attention. When he burps or farts he pushes the “excuse me” or “that’s gross”. If you try and find a certain button on his talker, he will hit “excuse me” as if to say, back off this device is mine. Last week he pushed the button with a keyboard on it. He wanted me to know he had played the keyboard at school that day.

Brian, his private speech therapists spends a lot of time working with Nick and his AAC device. The two go trolling around the speech clinic looking for ladies. Brian added a new button which Nick has been pushing, “You look pretty today, hubba-hubba!” That one has been a big hit 🙂

Nick’s talker, note the bumper pads the team installed.  Nick likes to send it airborne on occasion 🙂

IMG_5231

Last week, there was a major breakthrough with Nick using his talker. One trigger that often leads to a major meltdown for Nick is a crying baby or child. He will begin to pinch himself on his cheeks, followed by pinching anyone near him when this happens. This happened at an airport, leading to a severe meltdown the summer before last. While on a community trip at IHOP on Friday, a child began to cry at a table near them and Nick began to pinch himself. His teacher pointed to the talker instructing Nick to use it. Nick immediately took it and began to push the “stop” button. The first two times he hit the stop button the child stopped screaming. The look on Nick’s face was priceless. It might have been just a coincidence, but in that moment Nick realized using the talker really does work. His teacher cheered and praised him. He was so proud. It was as if he realized that he had power over the situation.

Yay Nick!!!

IMG_5116

It reminds me of many years ago, when the staff got trained to use PECS with Nick. His world of limited speech left him frustrated in those days during puberty. This resulted in many horrific meltdowns.  Using the PECS pictures gave him power; it gave him a voice (much like the talker is starting to do now). The key to the AAC device being successful will be getting everybody on board. Everyone that works with Nick needs to encourage him to use it (and praise him when he does). I look forward to sharing more of his successes with the talker and building on to this. I know he has much more to tell us all. That’s what is in my noggin this week.

~Teresa 🙂

 

Posted in Autism, Behavior/ ABA, Down syndrome

Autism and Meltdowns

meltdown

Autism and Meltdowns

April is Autism Awareness Month.  This week I want to focus on autism and meltdowns.  Here is a not so pretty portrait of one of Nick’s meltdowns that I have deconstructed for you.  Nick at the time was 19 years old.  He has Down syndrome and autism.  This will give you an idea of the triggers and behaviors that can occur during a meltdown.  It will also show you what I learned to try and prevent this in the future.

Click here to read @ https://nickspecialneeds.wordpress.com/2013/12/09/blog-77autism-and-meltdowns/

That’s what is in my noggin this week.  Thank you for reading and sharing the reality of autism.

~Teresa

 

Posted in Autism, Government/Legal Matters Related to Special Needs

Autism Awareness Month

Autism Awareness Month

autism awareness

This week I am posting a piece written last April about Autism Awareness Month.  Click here to view @https://nickspecialneeds.wordpress.com/2014/04/14/blog-91autism-…in-68-children/

Thank you for reading and sharing Nick’s world.  That’s what is in my noggin this week.

~Teresa