Autism – Page 21 – Down Syndrome with a Slice of Autism

Blog #94~Advice for Special Needs Moms

Posted on May 5, 2014May 6, 2019 by Teresa Unnerstall

Blog #94~Advice for Special Needs Moms

I’ve been raising a child with special needs for 20 years. My son, Nick has Down syndrome and was later diagnosed with autism. Being a parent is rewarding but also challenging and stressful. Having a child with special needs amplifies things even more. I’ve felt ashamed, exhausted, and frustrated piling on mounds of guilt along the way. With Mother’s Day coming up I’ve been thinking about a few things. What advice would I give to that 33 year old mom back in 1994?

Advice for Special Needs Moms- 5 Things I’ve learned

1. Let go of being the helpless victim. Take back control and commit yourself to action. Ask for help and accept help from family, friends, teachers, therapists, support groups and special needs agencies.

2. Adopt a new attitude when you feel bogged down. How about this mantra? “Today I will do just one thing to move me forward to where I want to be.”

3. Learn from others but set your own course. It’s easy to be overwhelmed when you see other moms trying gluten free, casein free, organic dietary programs, experimenting with essential oils, driving all over town to ABA behavior/OT/PT/Speech therapy programs and recreational activities. Forgive yourself, let go of those feelings of inadequacy.

4. Which leads right into GUILT! Society’s expectations don’t have to be yours. Don’t let anyone pack your bags for a guilt trip.

5. Take time to breathe, pray, meditate, exercise and feed your soul. A rested mind, body and spirit will help you navigate those rough, rocky roads.

Do I follow this advice every day? Hardly, this morning I procrastinated waiting until Nick ran out of his meds before making a doctor appointment. I also threw out a package of moldy hot dog buns buried in the pantry. The floor hasn’t been mopped in two weeks and I sat around like a slug watching this movie for the umpteenth time with Nick yesterday….

Do I feel guilty about it? Not near as much as I use to. The mounds of guilt have been reduced to a few, small piles I step in from time to time.

So, to all the special needs moms out there I wish you a Happy Mother’s Day. Slow down and do something you enjoy. Go have a glass of wine with your girlfriends. Take a day or at least an afternoon to do nothing but fun things you enjoy. Please carry that with you each day as you make your way down that rocky road. That’s what is in my noggin this week.

~Teresa 🙂

Autism, Behavior/ ABA, Down syndrome, Uncategorized

Blog #93~Down Syndrome & Autism and Getting Help

Posted on April 28, 2014April 28, 2014 by Teresa Unnerstall

Blog #93~Down Syndrome & Autism and Getting Help

Last Saturday was the National Down Syndrome Association (NADS) Retreat. NADS serves families in the Chicago area. This retreat is specifically for families that have a child with Down syndrome and autism. There is a children’s program that includes play time and swimming where respite workers are provided by NADS. Nick loves going to the retreat.

Nick enjoying pool time at the NADS Retreat a few years back……

The children’s program also has music therapy. Here’s Nick jamming last Saturday…….. 🙂

The parent agenda this year was to tackle some of areas that we’ve all been struggling with. Dr. Louis Weiss, Ph. D. lead a guided discussion of the top five topics chosen by the families attending the retreat. The five areas of discussion included:

Getting respite care and funding for it.
Teaching
Behaviors
Parental and family stress
Dealing with systems.

One family posed the question about their child and regression of behaviors. Dr. Weiss made a comment which resonated with me. He said that regression can happen during periods of transition. Regression is a way to prepare oneself to move forward. If a person doesn’t feel safe they will pull back first before they can launch themselves forward.

I had as Oprah says an “Ah-ha moment”. Last fall, my son Nick (19 years old) out of nowhere began to wet his pants repeatedly at school. I figured it was stress because he was starting the new transition program. But after hearing this comment it all made sense now. He was trying to deal with a new setting and a crowded bus. Nick didn’t feel secure and his behavior reflected just that.

Speaking of stress, there is a great deal of it for families raising a child with Down syndrome and autism. Let me put a lens on what we talked about. Imagine having to wash the sheets every day after your 14 year old wets or soils them. Or how about this? The constant worrying that your 12 year old may take a dump in the neighborhood pool and shut it down. Picture a 15 year old getting off the bus and plopping down in the middle of the street. He won’t budge for a solid hour. You have to stand there and direct traffic around him because no one stops to help out, and you forgot your cell phone.

Here is the takeaway that I got from this session. Dr. Weiss suggested that we need to figure out what causes us to suffer. Then look at re-framing the story, in essence figure out a way to fix it. Maybe it’s hiring a sitter to come in and wash those dirty sheets. Perhaps counseling could help with the stress. In addition, just getting a new set of eyes on the problem may help. This can be done by contacting an advocate or behavior support specialist.

We spent the afternoon building a resource list, networking, sharing our struggles and offering advice to support each other. By the end of the day, parents walked away loaded with more power in their arsenals. I am grateful to have the support of NADS and the retreat. It’s good to share struggles, successes and get help. Plus, no one in our group bats an eye if a kid is tapping shoe insoles against their mouth, stimming on a karate belt or plopped right in the middle of the corridor. These guys remind me that I’m not alone on this road navigating Down syndrome and autism. That’s what is in my noggin this week.

~Teresa

🙂 One last thing, Did you notice I changed the title of my blog to Down Syndrome With A Slice of Autism? (Though some days I think it’s the other way around) 🙂

I also have a new Facebook page with this title. You will find some new things here including weekly videos of Nick being silly. If you are on Facebook, please take a look at this page: Down Syndrome With A Slice Of Autism and I’d appreciate it if you would like the page!

Autism, Down syndrome, Feeding, Personal Hygiene, Toileting, Uncategorized

Blog #92~One Yellow Hash Mark at a Time

Posted on April 21, 2014March 7, 2016 by Teresa Unnerstall

Blog #92~One Yellow Hash Mark at a Time

I just finished this book written by Chad Hymas:

Chad had everything, a beautiful wife, two sons and a thriving business. One evening he made a rushed decision to ignore safety in favor of getting home quickly. Chad was anxious to see his baby boy take his first steps. On that day in 2001, at the age of 27, his life changed in forever when a 2,000-pound bale of hay shattered his neck leaving him a quadriplegic.

What follows is the story of how he fought back to gain his independence and ultimately setting a Guinness World Record by wheeling his chair from Salt Lake City to Vegas (513 miles) in 2003.

This was no easy task for Chad. There was some good news. His spinal cord wasn’t severed. He was able to regain important functions and have wrist movement as well as function in his biceps. In the book, he talks about starting out with his “personal Guinness records”. They were the very basic things that most of us take for granted like putting his own shirt on, brushing his teeth, shaving, and even getting his drivers license. Chad overcame unsurmountable obstacles and continues to inspire others with his message on all 7 continents and 38 countries. He did it by letting go of his old ideas of who he thought he would be and reinvent himself.

The quest to set that Guinness World Record was daunting. The first few days went well. But the desert heat beat down on him, leaving his hands blistered and bloodied. He hits a wall, not able to fathom going another six days. His dad tells him to think of it as one day, not six days. He says “Just do one more day”. With his Father’s encouragement he broke down the goal into smaller increments. One day at a time became one mile at time. He was 90 miles away from his goal. But the mile markers seem too far apart. His Dad steps in, “Son, don’t give up. Break down the goal even more. Instead of mile markers, count the yellow stripes in the middle of the road. They come faster. See if that helps.” After eleven days Chad Hymas crossed that finish line setting a new Guinness World Record!

As I read his powerful message, I thought of all the “personal Guinness records” that my son Nick has mastered. Nick is 20 years old. He has Down syndrome and would later be diagnosed with autism. Low muscle tone is a trait of Down syndrome. It affects not only gross motor skills but also chewing and swallowing food.

A very low tone Nick flopping over on his brother, Hank……

My son would not eat textured foods nor would he walk until he was nearly 4 years old. All the tasks to get him there were broken down, just as Chad Hymas did. It took Nick a long time to become independent with dressing, brushing his teeth and shaving. But he has hit all of those benchmark and then some.

I never imagined Nick would be able to do something like scuba diving…

Chad Hymas reminded me of something important. “Shift the focus on what I can do.” His friend and mentor, Art Berg was right, “You and I can do anything anyone else can, if you’re willing to do it differently.” As I continue to help Nick become more independent, I am going to keep Chad in mind and tackle each task one yellow hash mark at a time. That’s what is in my noggin this week.

~Teresa

For more information about Chad Hymas: http://www.chadhymas.com

Autism, Resources for Special Needs

Blog #91~Autism Statistics: 1 in 68 Children

Posted on April 14, 2014April 6, 2015 by Teresa Unnerstall

Blog #91~Autism Statistics: 1 in 68 Children

As most people know, April is Autism Awareness Month. Just a few weeks ago came the sobering news that 1 in 68 children in the US have autism (according to estimates from CDC’s March 2014 study).

Take a look at how the numbers have increased over the years…..

The new statistics represent a 30 percent increase from the 2012 estimates of 1 in 88 children with autism. Why are the numbers growing so rapidly? Some speculate that it’s because the diagnostic methods which have improved over the years. I find it hard to believe that this is the only reason that the numbers are increasing. According to TACA (Talk About Curing Autism (www.tacanow.org), “More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. In addition, autism costs the nation over $137 billion per year, a figure expected to significantly increase in the next decade.”

Autism has no single, known cause. There have been numerous studies linking autism to a wide variety of genetic and environmental factors. There have been several studies linking vaccines to autism and many parents who feel strongly that this was the case with their children.

Here’s the bottom line, there is a generation of children and their families who have been severely affected by autism. These children, like my son Nick are growing up and becoming adults.

Nick age 20……

Children and adults with autism are out in the community full force, with even more coming behind us. It’s time for a comprehensive national strategy. We need leadership to help us find answers for causes, treatment, solutions and resources for people who live with autism. We need compassion when we are out in the community struggling with our kids who make loud noises, flap their hands and have knock down drag out meltdowns. Changing the light bulb blue to promote autism awareness isn’t going to help make things better for the lives of those affected by autism.

It’s time to send a loud message to Washington that the needs of the autism community are growing rapidly and the resources are limited, (not to mention the family bathrooms). I worry that when my son ages out of the school system at age 22, he’ll be stuck on a waiting list because there aren’t enough facilities available for community work, leisure and a secure group home. I am not alone here; there are almost two million others in the country who go to bed each night with the same concerns. That’s what is in my noggin this week.

~Teresa

Autism, Behavior/ ABA, Down syndrome, Fun Side of Nick

Blog #90~Autism Awareness Nick Style

Posted on April 7, 2014April 7, 2014 by Teresa Unnerstall

Blog #90~Autism Awareness Nick Style

It’s April which is “Autism Awareness Month”. Believe me I am quite aware of autism. Nick never lets me forget, nor anyone else who is around him. Last week was spring break. My twenty year old son who has Down syndrome and autism was lighting up more than just blue. Here are the highlights…

Day one of spring break:

Nick is pushing every button he can find, microwave and bathroom fans, turning up the TV volume to 99 and finding the one button on the iPod home which blasts Hispanic radio music. It’s going to be a long week. The music is heavily laden with the sounds of trumpets, trombones and accordions. By the way, the radio station is WLEY-FM (107.9 FM La Ley) features a regional Mexican music format focusing on Ranchera.

Day two of spring break:

It started out with Nick popping up at 6:30am. He came in and pressed the iPod home button to 107.9FM next to my bed as he giggled and let out a big fart. He followed this up with an early screening of “Grown Ups” (volume level 99) and blasting the water faucets. Thankfully Lara, his respite worker took him to see the new Muppets movie and out to lunch. That afternoon, he crawled into bed with his DVD player wearing his blue sunglasses. The “Grown Ups” movie may get deep sixed before this week is over.

Day three of spring break:

I got a 5:15am wakeup call from Nick, (mind you on any school day I have to throw a stick of dynamite in his bed to wake him up). I put him back to bed and managed to sleep in until 7:30am. Morning coffee time was drowned in you guessed it another showing of the movie, “Grown Ups”. All day long nothing but yelling, tennis ball can tapping, and microwave/ phone intercom button pushing. In between those antics, Nick would run upstairs to push the iPod to 107.9. Viva Nick! The noise can be mind numbing, not to mention the snot rockets he blows and wipes across the flat screen TV. Today is “World Autism Awareness Day”. Believe me I am well aware of it.

Day four of spring break:

It’s cold and rainy, but at least he slept in until 7:30am. Nick watched movies with his respite worker while I went in to teach stability ball and step classes. He was even sillier today, must be the cabin fever. I’ll let the pictures speak for themselves.

Silly guy 🙂 …..

His favorite dumping spot, behind the flat screen TV. Good news, I found my shoes….

Poor Stuart Little…..

Day five of spring break:

It’s my day off from teaching and thankfully Nick slept in until 9:00am so I was able to enjoy my first cup of coffee in peace. He was pretty good today, with the exception of a few button pushes, blasting 107.9 and flicking the bathroom light on and off while I showered. It was cold and blustery so we bundled up and headed out to Taco Bell.

Nick loaded up with stims……

He was so excited when we got there. Just one problem, the ice machine wasn’t working. Nick stood there pushing the ice button to no avail for several minutes. He wouldn’t budge. One thing about autism, any change in routine is a possible trigger to set him off.

I finally got the attention of a worker who was able to fill up our cups with ice behind the counter. Meltdown, deflected….. whew!

Day six of spring break:

Hallelujah, Nick slept in until 10:00am! Thankfully he chose to watch a different movie…….

I took him out to eat at Burger King. We usually go out later around 1:30pm to avoid the lunch crowds and curious stares. I couldn’t believe it, when we walked up to the drink station guess what? They were out of Sprite…. are you F’ing kidding me?

Nooooooooooooooo…….

I asked Nick if he wanted Coke or Minute Maid Lemonade. He screamed and pinched his cheeks hard. We made it to the table but he wouldn’t eat. He kept clutching and pulling at his cheeks. Finally, he started to eat his fries but wouldn’t touch his drink. “Nick, want to drink your Coke?” He let out a big yell. Another couple whipped their heads around staring at us. I smiled and said, “That’s autism, isn’t it nice?” After eating all his fries and chicken tenders he finally took a sip of his drink and let out a burp and a smile. Whew, meltdown avoided. This calls for some ice cream…..

The sun came out and the temps were warming up close to 50 degrees, so we took a walk in the park. It was a nice, peaceful ending to a long week.

It’s not all noise, pranks and chaos with Nick. He does sugar coat things with his smile, hugs, kisses, snuggles and elbow bumps. I’ve come to appreciate his creativity and sense of humor that keeps me on my toes. Hope you enjoyed my installments of autism awareness, Nick style. That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome

Spring Break

Posted on March 31, 2014 by Teresa Unnerstall

It’s spring break for Nick so I am taking this week off from posting. Tune in next week for stories and information. Thank you for reading and sharing Nick’s world!

~Teresa 🙂

Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #88~ Parent Tips for Better IEP Meetings

Posted on March 17, 2014July 30, 2018 by Teresa Unnerstall

Blog #88~ Parent Tips for Better IEP Meetings

My 20-year-old son, Nick has Down syndrome and autism. While driving to his IEP meeting last Monday it occurred to me that he only had one more of these next year. With 15+ IEP meetings under my belt, I have learned a lot about how to become an effective advocate for my son. IEP stands for “Individualized Education Plan”. An IEP is done for a student who has special needs. These meetings are held each year to update the student’s current level of functioning, progress and goal planning for the following year. There was a time when I was terrified and intimidated by IEP meetings. Here are some things I’ve learned to make an IEP meeting be effective and run smoothly.

Nick’s senior portrait…… 🙂

Here are my top 10 parent tips for better IEP meetings:

1. Establish communication with all the teachers, therapists, and other key members of the IEP team via email. Send a communication notebook back and forth in your child’s backpack. Attend conferences, open house events and if you can, chaperone at field trips and volunteer in the classroom. All of these things will help to build a relationship with the staff and making you feel more comfortable.

2. Designate one notebook for all meetings, conferences and trainings related to your child. Keep a folder for the current IEP and progress reports. Review these prior to the meeting.

3. After you review your child’s goals, make notes for the support teacher/case manager of what you’d like to see for the upcoming year using an “IEP planning form”. Click on the link at the end of this blog to obtain a form.

4. Request a copy of the IEP draft (including present level of academic functioning, and all proposed goals) to review BEFORE the meeting. Go through this with a fine tooth comb making notes in red ink of any questions you have or things you would like to see added.

5. Learn your child’s educational rights. Click on Wrightslaw link provided at the end of this blog below.

6. Don’t hesitate to ask questions and seek clarification.

7. If you feel unsure or overwhelmed bring an advocate from your local support group or a seasoned IEP parent to the meeting.

8. Keep in mind that according to the law; schools do not have to offer the best, they have to offer what is “most appropriate” for your child.

9. The child should be the center of focus at the IEP meeting. A parent’s dream for their child may not be what the reality is. Keep an open mind to this.

10. You know your child the best. You are a equal part of the team, speak up!

If you have serious doubts or concerns about the IEP, ask to take it home and review it further. You are NOT required to sign it if you disagree or have any uncertainties. You only need to sign that attended the meeting. Put any concerns that you have in writing and returned them to school with the unsigned IEP. You can request another IEP meeting.

IEP Planning Form for Parents:

http://www.greatschools.org/pdfs/2200_21-IEPplanning.pdf?date=3-11-02

Special Education Rights:

http://www.wrightslaw.com

IEP meetings don’t have to be a scary thing. Do your homework beforehand. If you are prepared and keep the lines of communication open, then they can run quite smoothly. That’s what is in my noggin this week! 🙂

~Teresa 🙂

Autism, Down syndrome, Education and Special Needs

Blog #87~Special Needs Parent Checklist for Visiting a New School

Posted on March 10, 2014March 10, 2014 by Teresa Unnerstall

Blog #87~Special Needs Parent Checklist for Visiting a New School

It’s almost spring…… that time of year when the scent of IEP’s are in the air. IEP stands for Individualized Education Plan.

The team as a whole looks at the student’s current level of functioning and together design goals and supports needed to provide appropriate education for the student. The placement of a child with special needs should always be in the least restrictive environment possible.

Nick has Down syndrome and autism. He uses a visual schedule to navigate through the school…….

Parents with a child who has special needs can arrange to visit schools and see what the classroom environment looks like. Here are some tips and helpful questions that should be asked on the tour. I would suggest designating one notebook to take to any meetings and trainings related to your child with special needs.

My trusty, battered notebook……. 🙂

Questions to ask on school visit:

*What are the location, size and physical layout of the classroom(s)?

*How many students are in the classroom? What is the ratio of students: adults?

*What instructional methods and materials will be used?

*How will the curriculum be modified for a student with special needs?

*What assistive technology is available?

*What behavior techniques and plans will be used?

*What does the school day look like? (Ask for a printed schedule and to sit in on classes.)

*What kinds of inclusion opportunities do children in special education classrooms have to interact with general education students?

Observation of class and school:

*Watch the dynamics of the classroom. How does the teacher interact with students? Does the teacher individualize instruction?

*What activities were children engaged? Would they be appropriate for your child?

*Do the classrooms and staff seem cheerful?

*Is student work displayed and is the classroom organized or would it be too distracting for your child?

*Are the curriculum, equipment, technology and educational supports up to date?

*How well are the facilities maintained? (Clean bathrooms, lighting, safe grounds, etc…)

*Is there a sensory room available in the classroom or school building?

Once a school and classroom placement decision is made be sure and get pictures or do a video of the new setting for your child. This social story should include the entry, locker, classrooms, lunch room, gym and any other relevant areas the child will be using in the school. Review the social story or video several times before the first day of classes.

Here’s Nick visiting the middle school back in 6th grade. He was skeptical about this new environment as indicated by not wanting to remove his coat and keeping it zipped up to the top……..

As a parent of a child with special needs, remember that you know your child best. You have the right to get in there and see what the classroom environment looks like in order to make an informed decision at your child’s IEP meeting. That’s what is in my noggin this week.

~Teresa 🙂

Autism, Behavior/ ABA, Down syndrome, Fun Side of Nick

Blog #86~Down syndrome and Autism…Boy to Man

Posted on March 3, 2014March 3, 2014 by Teresa Unnerstall

Blog #86~ Down syndrome and Autism… Boy to Man

I find it mind blowing that my son turned 20 years old. What a strange dichotomy. In many ways he is much like a child. Nick still watches Thomas the Tank Engine DVD’s and plays with kiddy toys. He needs prompts with grooming, dressing and navigating throughout the day.

He is small in stature, and at first glance you might mistake him for a middle school aged student. But if you take a closer look, there are signs that he is indeed a young man. His voice is deep and you can see the visible razor stubble on his chin. That, and the fact that he likes to sneak a gulp of his Dad’s beer on occasion. 🙂

Bottoms up Nick……

At Nick’s conference last week, a poignant question was raised. What are his barriers for increased independence? For Nick it is his impulsiveness. It’s that need to push buttons, in particular those big red buttons. He can never be left alone.

For those of you keeping score at home, the current count is 30 pulls since 3rd grade…….

In the Down syndrome and autism support groups we all scratch our heads at the antics that our kids come up with. The reoccurring theme is that impulsiveness. It’s uncanny, the things they come up with to mess with us. So often, our stories are similar. Maybe it’s throwing a shoe out the bus window, coming in like a seagull and swiping something off your plate, opening up the car door while you are driving 50 miles an hour, stripping down buck naked, throwing an iPhone down the toilet, turning the TV volume up to 99, blowing a snot rocket and wiping on the flat screen or pushing the microwave and phone intercom button repeatedly.

Or dumping an armful of hangers into the washing machine…

Hardy har har Nick, good one! There are a lot more pictures in Blog #3~Getting Your Goat, located in the April 2012 archives.

Within the framework of the “barrier question” above, it becomes increasingly obvious that these behaviors need to be controlled and contained. Best case scenario, maybe Nick needs to express his funny side in a more appropriate fashion that is less invasive. There is no way he could survive in a group home pulling such pranks.

We have two more years in the post-secondary transition program. On the day of his 22^nd birthday the little yellow bus will stop coming to the door. So, the IEP goals for Nick need to be focused on global independence both in the community and at home. It’s a bit daunting but then again, so was toilet training him. Somehow we survived that. I look forward to the IEP next week and seeing how his program can be shaped to foster a more mature adult version of Nick. That’s what is in my noggin this week!

~Teresa

Autism, Down syndrome, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #85~ 10 Great Special Needs Resources

Posted on February 24, 2014September 30, 2014 by Teresa Unnerstall

Blog #85~ 10 Great Special Needs Resources

Last week I targeted some links specific topics related to Down syndrome and autism. I have a few more that relate to a variety of areas related to the special needs population. You can click right on these links and check them out:

www.wrightslaw.com Comprehensive information Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

www.woodbinehouse.com Publishes book for parents, children, teachers and professionals related to special needs.

www.specialreads.com Special Reads for Special Needs Publishing was founded by Natalie Hale in 2000 to answer a need for effective, entertaining reading materials for learners with Down syndrome, Autism, and other developmental delays.

www.hopefulparents.org Grassroot support for parents of kids with all types of special needs.

www.supportforspecialneeds.com A community that offers a chance to exchange wisdom and ideas among one of the most powerful group of people we know.

www.leslie4kids.wordpress.com Comprehensive information on Childhood Apraxia and Speech, parenting and child development.

www.specialsparkle.com Beautiful jewelry designed and made by a 21 year old young lady who has Down syndrome.

www.downsdesings.com Downs Designs provides a stylish clothing line with proper fitting for unique body types associated with having Down syndrome which is easy to get on and off.

www.hammertravel.org Offers a variety of travel opportunities for individuals with developmental disabilities

www.nickspecialneeds.wordpress.com This site which provides information on a variety of special needs topics. Much of the information specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

Hope you find these additional resources for special needs helpful. That’s what is in my noggin this week. More about Nick’s world next Monday, stay tuned…….

~Teresa 🙂

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