Down syndrome and autism – Page 12 – Down Syndrome with a Slice of Autism

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, 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, 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 #84~ Resource Links Related to Down syndrome and Autism

Posted on February 17, 2014September 9, 2019 by Teresa Unnerstall

Blog #84~ Resource Links Related to Down syndrome and Autism

Today is President’s Day, so there is no school. My ability to focus and write is hindered by interruptions from Nick who is making loud mooing noises, pushing the fan button on the microwave, dropping things behind the TV and watching “The Other Guys” while tapping a can of tennis balls against his mouth. Yes, that’s a slice of Down syndrome and autism here this morning………

So this week I’ve included my favorite resource links related to Down syndrome and autism:

Down syndrome links:

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

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

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).

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.

www.noahsdad.com This site is invaluable for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused. It is one of my favorite websites.

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 Links:

www.facebook.com/autismdiscussionpage This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This is one of my favorite links related to autism.

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

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

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

www.brianraymondking.com Brian King teaches his proven methods to individuals and their parents across the country in a private one-on-one format using the latest technology. He writes a variety of articles, is an author, speaker and trainer for schools, parents and support groups.

www.bridges4kids.org Great resources for special needs families. One of my favorite go to sites.

www.myautismteam.com Parents share daily trials, triumphs, questions and recommendations

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

www.teeach.com Information on TEEACH materials

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

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

www.specialedadvocacy.org Advocacy site for parents and teachers

Down syndrome and autism links:

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

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

www.theupsideofdowns.org Provides support, advocacy and information specific to Down syndrome and autism.

In addition, let me add that there are several Facebook groups directly related to Down syndrome and autism. These groups are a safe place to share information, ask questions, and share the crazy things that our kids with a dual diagnosis do. No one in these FB groups would bat an eye if you posted a picture like this……… (In fact they would hit the like button and add in their own pictures in)…….

There is help out there right at your finger tips. Let me know if you have any more to add in. Thank you for reading and sharing my blog. Now, it’s time to gather up the contents of my purse that Nick decided to dump all over the living room floor. That’s what is in my noggin this week! 🙂

~Teresa

Fun Side of Nick, Speech and Occupational Therapy

Blog #82~Hats off to Nick

Posted on January 27, 2014January 31, 2014 by Teresa Unnerstall

Blog #82~Hats off to Nick

I’m sitting in the kitchen looking out the window. The sun is gleaming across the snow covered yard but it’s deceiving as the thermometer reads -1 degree. Nick is home as the school district declared yet another snow day. So we are hunkered down as this polar arctic blast paralyzes the city and a large portion of the country.

I’m a Texas girl, when the temps dropped down to 50 degrees I use to whine. The whole state shuts down when hit with snow and ice……..

However all that has changed since living in Chicago. My threshold has altered significantly. The other day I headed out to teach a spin class, it was 29 degrees. I felt like I didn’t need a coat. One thing I have to say about Nick is that no matter what the thermometer says he is always barefoot around the house.

Even in the dead of winter he has never liked wearing hats and gloves. A 6 year old Nick taking on the backyard hill……..

Many of my friends who have children with a dual diagnosis of Down syndrome and autism can relate. We can tell you at least one story about our youngsters stripping down buck naked for no apparent reason. That’s how our kids roll. Boy am I glad those naked days are over with Nick, especially this winter. As long as I can remember, it has been nearly impossible to keep hats, gloves and shoes on Nick in the winter. My friend, Susie use to share stories about Nick when the bus pulled up to get her son. As soon as the door opened, out came a flying shoe. Hardy har har….. Susie would have to pluck it out of the snow and hand it back to the bus aid. Well played Nick, well played. 🙂

Nick and hats, they just don’t go together. He barely keeps one on from the walk out the front door to the bus. He won’t wear his jacket hood either. His occupational therapist has been working with him to put them on independently along with tolerating it for longer periods of time. He’s getting a little better with it. When I picked him up the other day, he sat patiently wearing both a hat and gloves. I asked the OT, how she got him to put them on. She said, “I told Nick, its cold outside, put these on”. Funny how they listen to the therapists and become compliant. So I’ve been leaving a variety of hats sitting out in case he wants to try one on. Over the past month or so, he is actually giving them a go.

This morning he put on his Dad’s gloves……

I wish he would wear hats more. He looks so cute in them. This one lasted well over 15 minutes. Bravo Nick!

But for now, I’ll just be satisfied for him to keep a hat on outside in the subzero elements. Hat’s off to Nick for trying to keep them on longer. That’s what is in my noggin this week. Stay warm my friends and let’s hope the groundhog doesn’t see his shadow! 🙂

~Teresa

Autism, Down syndrome

Blog #81~Dreams for the New Year

Posted on January 20, 2014January 5, 2015 by Teresa Unnerstall

Blog #81~Dreams for the New Year

This year I decided on just one resolution. I am going to require more of my self. Oh wait one more……Keep the bird feeders filled up! As I wrote in Blog #79~Reboot 2014, I have a need to start fresh. It’s time to move past the “stuff called life” that got in the way in 2013.

I have to stop making excuses like “I’m too busy to work on my goals and dreams”. So, in all areas of my life I am requiring more of myself. This includes at home, work, writing, personal ambitions and what I expect from Nick (my 19 year old son who has Down syndrome and autism). A good friend of mine gave me a plaque for Christmas which I keep near my laptop. It says this:

“Believe you can, and you’re halfway there.” ~Theodore Roosevelt

I’ve cracked my knuckles; gotten things organized around the house, and feel ready to take on 2014. How about you? What are your dreams for this year? What is going to keep you on track? For me visual cues help, much like the icons that Nick uses to navigate his day……..

My new plaque is a nice reminder to stay on track. All around the house I’ve sprinkled trinkets around for inspiration…….

I know exactly what my sister Laura, is thinking right now. There she goes again, deep thoughts by T!

Nick with his Aunt Laura and Uncle Scott…..

Yes I have a reputation in my family of getting a bit reflective. 🙂

Back to Nick’s world, just what can I do to require more from him? I was thumbing through some files in my organization frenzy recently. I stumbled on a one called “Basic Functional Life Skills Curriculum. I scrolled the list and noted that there many benchmarks he hasn’t met. He still needs help to become more independent in the areas of grooming, dressing, chores, leisure, etc…..

Yes, he’s rocking my high heels while unloading the dishwasher……

I have to remind myself to slow down. I need to let Nick try more of these things on his own with less guidance from me. Take some advice from the guru:

Having a child with Down syndrome and autism means a reliance on a caregiver at all times. I have come to accept this fact, but I am never giving up.

I’m going to require more from myself to help Nick become the best he can be! How about you, what are your dreams for 2014? That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome, Tech Stuff/Apps and Video Based Instruction

Blog #80~Getting Organized Along With My Autistic Child

Posted on January 13, 2014January 13, 2014 by Teresa Unnerstall

Blog #80~ Getting Organized Along With My Autistic Child

Is it odd that I like to have all the labels turned straight in the food pantry and the towels stacked perfectly in the bathroom closet? My hangers might just be color-coded (white=shirts, gray=pants, teal=capri length pants). I wasn’t always so compulsive.

I’ve touched on my theory about this in previous blog posts. Simply this, I need to feel in control in my home and creating order helps keep me grounded. Having a child with Down syndrome and autism under your roof is not exactly a “Zen” environment. Nick’s world can be chaotic. Just go back to the April 2012 archives and read Blog #3~Getting your Goat for a little taste of crazy. 🙂

This is just one of many things Nick has dumped on the floor…..

So over the weekend, I got on a roll. Operation Re-boot 2014 inspired me to get organized. First stop= Clean out the paper pile and mail that accumulated over the holidays and made my “to do list” for the week. Next, Put away the Christmas gifts and stuff from the Florida trip that I stashed in the dining room…….

I opened the medicine cabinet to put the cold meds back (that had been sitting in the dining room for over a week). Suddenly, an avalanche of allergy boxes spilled out and bonked me on the head. Guess what the next stop was?

Wow, it’s been a long time since the medicine cabinet was cleaned out! Nice expiration date…. 11/06 on the Tylenol bottle…..What the?

Voila, purged, organized and labeled!

Next stop= The island of misfit socks. Maybe some will reunite with their mate…..

Last stop= Clean out the fridge

After a long day in full steam OCD mode, I felt lighter and more in control of my living space. The chi energy was once again flowing freely~~~~~~~~ aaahhhh!

Getting organized helps us to better plan daily activities and use our time more effectively. It’s not easy for some people with Autism Spectrum Disorder (ASD). The nervous system is not always in sync which makes things difficult to process sensory information. This can lead to feelings of disorganization, agitation and being overwhelmed. According to the National Autistic Society, “Challenges are found in processing information, predicting consequences of an action, understanding the concept of time and executive function (focus on details instead of the whole picture).”

Most of us use certain strategies to help organize our day. I use an old school calendar that is color-coded in the kitchen. At a glance events are highlighted and easier to spot. Teaching fitness classes=green, appointments=pink, birthdays=orange, vacations=purple, etc… Color coding and other strategies can also be equally as effective for people with an autism spectrum disorder (ASD). Here are some practical ways to teach and implement organization:

Visual supports

Social Stories give a blueprint for what is expected for behavior, what is on schedule and changes in routines.

Pictures (Picture Exchange System called PECS)

Note Nick’s room has pictures labeled on his dresser to help him find and put away his own clothes. Teaching organizational skills to persons with autism fosters independence…

Lists

Written or visual with pictures keep persons on task and also registers achievements.

Electronic Devices

Phone and iPod apps are available to make schedules, set alarms and timers and act as general reminders. See Blog #52~Tech Time located in the April 2013 archives for specific suggestions. Here’s one…….

Task boxes, envelopes and files

Store media devices, work bins and personal items in set places helps to teach responsibility. Nick’s area includes his PECS Communication book, media storage box and the “STOP Box“ (which I hand him when it is time to surrender an item and transition).

Nick’s work bins that he can retrieve and navigate independently….

Getting things organized helps all of us feel more in control and makes for a more efficient use of our time. Putting strategies in place to help persons having autism spectrum disorder can make a huge difference. Their world becomes easier to navigate, which in turn lessons anxiety. It’s all about staying in the Zen zone. That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome

Christmas Wishes

Posted on December 23, 2013 by Teresa Unnerstall

Thank you for reading and sharing Nick’s world this year. Have a Merry Christmas and we wish you a Happy New Year! Enjoy your holiday with family and friends.

I am taking a two week break from the blog, but there’s plenty of good stuff in the archives to dig thru and enjoy in the meantime. We look forward to sharing more fire alarm updates, stories, and information about Nick, Down syndrome and autism. See you next year (that never gets old does it?) 🙂

Cheers,

~Teresa

Autism, Down syndrome, Fun Side of Nick

Blog #78~Christmas Past

Posted on December 16, 2013December 15, 2014 by Teresa Unnerstall

Blog #78~Christmas Past

This week; a look at Christmas past with Nick and his older brother, Hank. Having a brother with Down syndrome and autism requires patience and understanding. It’s not always easy with Nick yelling, dropping things, stimming and giving us all a run for our money. I give Hank a lot of props for putting up with it all these years. Here are some of their special times together at Christmas.

Christmas in Texas, no pants required 🙂

Family gathering back at my parent’s home. I love Nick’s toothless grin!

Christmas at GMA Theresa and GPA Jim’s house in Chicago. Here’s Nick with his cousins Anna and Sam. Looks like Nick got a new musical toy 🙂

Christmas and Bears game time!

They’re getting bigger!

My high school boys…..

I hope that you enjoyed a look back at Christmas past. I treasure the many fond memories of my boys over the years. May your Christmas be filled with joy, love and peace.

~Teresa 🙂

Autism, Down syndrome, Fun Side of Nick

Blog #75~ 5 Reasons I am Thankful for Nick

Posted on November 25, 2013November 23, 2015 by Teresa Unnerstall

Blog #75~ 5 Reasons I am Thankful for Nick

The road I have travelled with Nick was not in the plan. It’s the thin, grey line on the map that is bumpy and full of twists and turns. Nick has Down syndrome and autism. The pace was bogged down as he struggled to hit developmental milestones. Other times it has been lightning fast, (like when you are racing to beat him to an exposed fire alarm). After 19 years and 30 fire alarm pulls, I am very thankful for Nick and here is why:

1. I appreciate the small successes much more now. I don’t take anything for granted that a child has to learn like sitting, eating, crawling, walking, talking and especially toilet training. Each victory has been sweeter when Nick hit the marks.

2. I am more grounded because of Nick. He has taught our family to stay humble. While other moms were bragging about their child getting A’s in honors classes, being the star athlete and what colleges they were looking at, I smiled politely. In my mind I was thinking, “At least Nick didn’t pee in his pants at school this week.”

3. I’ve become some what of an expert on Down syndrome and autism. Through trial and error along with wonderful teachers, therapists and mentors I have learned what works best for Nick. I am now able to pay it forward in my writing, speaking engagements and helping other parents out.

4. Life is never boring with Nick. He cracks me up with his mischievous ways. He generates laughter and tons of “Likes” on my Facebook page: Down syndrome With A Slice Of Autism”.

Here’s Nick’s signature elbow bump, (his version of a high five) with his Dad and Aunt Laura 🙂

He’s got that look on his face like, I’m going to grab your wine) 🙂

What a jokester, hardy har har Nick……

5. Nick gives unconditional love so freely. Each morning he wakes up, lets out a fart and smiles. All through the day he showers me with kisses, elbow bumps and hugs.

I am truly thankful to have travelled down this road with Nick. It has been a blessing to be his mom. That’s what is in my noggin this week. Have a wonderful Thanksgiving!
~Teresa

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