March 2013 – Down Syndrome with a Slice of Autism

Blog #47~Easter thru the Years

Posted on March 25, 2013April 2, 2015 by Teresa Unnerstall

Blog #47~ Easter thru the Years

I love holiday traditions. Growing up each holiday was filled with many rituals that I carried over with my own family. At Easter, Mom would pull out all the coffee mugs and prepare each by dropping in a tablet out of the Paas egg dye kit.

Our tiny, shaking hands would carefully balance the egg on the wire ring and dip it into the rainbow of colors filled in each mug. I always made one like the Sprite “limon” commercials.

Of course my older brother, Tom would always take one egg and be sure to dip it in every single mug. The end result was a gross, olive hued mess that he was quite proud of.

The next morning we would put on our Easter outfits. After church we would pause for a quick photograph before we started the egg hunt in our backyard. Mom’s handy work as a seamstress is unmatched. Of course, no outfit would be complete without the white, patent leather shoes. Just don’t wear them after Labor day. 🙂

Me and sis in matching dresses my mom sewed. That’s Bo, our Border Collie in the background…

The Easter bunny would leave a basket for each of us filled with plastic, green grass. Mom hated that fake grass. It would get all over the house and she probably cursed it for months afterwards. The baskets would brim with jelly beans, tiny bright colored chocolate eggs and the hallowed Russell Stover filled eggs….

Nummy…..

After raiding the baskets, we would change into shorts and spend all afternoon hiding and re-hiding the eggs.

Years later with my own boys in Houston, I carried on the traditions of dying eggs and Easter egg hunts. Here is the first Easter for Nick who is two months old. I had to hold him up in a coccon because he was so floppy. You can really see the low muscle tone (a trait of having Down syndrome) in his scrawny legs. His brother, Hank (21 months old) looks thrilled to be wearing that stuffy bow tie and suspenders.

Nick just over a year old with Easter Bunny, he’s growing…..

Hank with Paw Paw Tommy and Grandma Babs, all prepped for egg coloring….. Yes I still made the “limon” egg and Hank took over making the gross egg like my brother use to do.

Hank (5) and Nick (3)….

After Texas, we moved to California and still had our holiday rituals….

Easter Morning in California, Nick is getting bigger!

This Easter egg hunt was the following year. We had it out amongst the dunes at Hilton Head Island, SC. with the cousins……

This is the first time that Nick hunted and found and egg on his own. Way to go Nick! 🙂

Since we moved up to the Chicagoland area the egg hunts look a lot different. The egg hunts are usually indoors because the temps are below 40 degrees. Hank and Nick are searching at their grandparent’s house before mass….

Hank scores some eggs! Now where is the shiny, golden egg with the $5 bill in it?

Miss Mellie looks purr-fectly wonderful!

I hope you enjoyed a look back at our Easter traditions and memories with the boys. That’s what is in my noggin this week.

Have a blessed Easter!

~ Teresa

Autism, Down syndrome, Education and Special Needs

Blog #46~A Day in the Life of Nick

Posted on March 18, 2013March 18, 2013 by Teresa Unnerstall

Blog #46~A Day in the Life of Nick

This morning I am prepping for Nick’s IEP meeting to be held at 11:51 a.m. I review all of the progress reports that I requested ahead of time. It is essential to get those reports early so you know what is going on. Plus it saves time during the meeting. I have more tips in Blog #24~Top Ten Things I have Learned While Navigating Nick through School, (located in the October archives). I want to give you a glimpse into the day in the life of Nick’s world at school. What does someone like Nick who has Down syndrome and autism (lacking reading and writing skills) work on in school?

His day starts early, the skies are still dark when the bus rolls up at 6:30 a.m. Most mornings Nick is dragging but when I mention it’s a community day he tends to perk up a little quicker. The first two periods of Nick’s day are called “Life Skills.” The class looks at the calendar, works on dates, upcoming events and the weather. Nick enjoys telling others about the weather and is consistent in picking out the correct icon and working the weather page on his iPod Touch Chat program. After calendar, the students practice yoga. They are following the “Get Ready to Learn Yoga Program.”

This is followed up with reading skills working on IEP goals of community safety words and pictures, computer programs and group news sharing session of current events. On Thursdays there is a cooking unit. Nick loves it and has tried several new foods this year including chili mac, waffles, pancakes, chocolate chip cookies and spaghetti tacos. Now I am hungry! 🙂

Here’s an example of a recipe they use at school for monkey bread…….

Third period is called “Home Maintenance.” During this time Nick prepares a simple snack. He makes a choice using either his picture icons or iPod Touch Chat. He likes Cheezits, pretzels, popcorn, salami and cheese. Here he is able to practice fine motor skills like cutting and opening packages with the occupational therapist. He also works on hygiene skills, (brushing teeth, putting on deodorant and body spray, etc…). For practical information and visual supports about hygiene and dressing be sure to read Blog #22~Grooming 101 (located in the September archives).

Nick takes adapted physical education in fourth period. Units include soccer, swimming, basketball, volleyball, badminton, kickball, adventure education and walking. He really enjoys the interaction with peer buddies in class. Period five is lunch time. 🙂

In the afternoon for periods six through eight, Nick has “Vocational and Community” skill building. Nick is working at job training sites three days a week. These include Tabor Hills (retirement home) and Re-Store (Habitat for Humanity) where is responsible for vacuuming.

His third job is at Adopt (animal shelter) where he removes leaflets from stacks of newspapers for cages. On the other days he has school jobs which include shredding, work bins, rental laundry. Wednesdays I have no problem getting Nick out of bed. It’s community day. 🙂 He enjoys it and is so happy being out and about. The activities include dining out both at fast food and sit down restaurants, mall walking and shopping at Wal-Mart for groceries to use in the cooking unit. Here he works on his goal to pay with a debit card.

Nick trying on sunglasses at the store…… He’s looking pretty fly!

He can manage a grocery cart (with reminders to not purposefully run into items or people)

Ramming speed ahead! You should see Nick barreling through Costco 🙂

That is the day in the life of Nick in high school. His days are filled and structured during the week from 6:30 a.m. until 2:30 p.m. He loves going to school and enjoys the staff (and giving them a run for their money.) That’s what is in my noggin this week.

~Teresa

Augmentative and Alternative Communication (AAC), Speech and Occupational Therapy

Blog #45~Can We Talk?

Posted on March 11, 2013February 23, 2015 by Teresa Unnerstall

Blog#45~Can We Talk?

How does someone like Nick who has Down syndrome and autism communicate his needs and wants? Let me start at the beginning. When Nick was in the infant program he was taught sign language. He would sign “more, all done, yes, no and other basic words.” Using sign language gave him a voice when the low tone of having Down syndrome slowed up his speech.

When he was around 4 years old I began to snap photographs and put them on one of those blue school pocket charts. These pictures included things he enjoyed like juice, Goldfish, Thomas the Train and Barney videos. These worked great and he understood all of them.

In first grade I requested an assessment to see if he would do better with an augmentative and alternative communication device. According to About.com, Augmentative communication is an alternative way to help students and adults with language disorders use expressive language or receptive language. Augmentative communication can be accomplished through assistive technology devices such as computers or hand held devices. Low technology such as picture communication systems can also be used as augmentative communication.

The evaluator came out to the home to try some of the voice output devices with Nick. He just stimmed on the devices, hitting the buttons rapid fire like a DJ scratching a rap record.

The evaluator concluded that it would serve Nick better to use a low tech picture system to help him communicate. She gave me a handful of laminated pictures (goldfish, chicken tenders, pasta, milk, juice and Coke.) They were like rare, gold coins that I treasured. (There was nothing like Google Images back when he was 6 years old.) You either had to snap photographs, cut out pictures out of magazines or beg for icons from the speech therapist. Note that around this time, Nick was also diagnosed with Verbal Apraxia of Speech which further complicated his ablility to articulate. For years, Nick used pictures and sign language to communicate his needs.

Since Nick can’t read or write and his verbal skills are limited, he needs support. What we learned is that someone like Nick who has autism tends to see things clearly with pictures. If he can see it, he can understand it. In fifth grade the school team was trained on how to use the PECS (Picture Exchange Communication System). There is a precise protocol to the system. Once the protocol was followed, Nick made great strides in using the pictures to communicate wants and needs. He finally had a voice! 🙂

The cost of buying the software used by most schools is steep as well. A Mayer-Johnson Boardmaker program can be $400-$800 dollars! However, if you are a parent you can purchase these programs for 1/2 price. 🙂 Also if your CD gets damaged (aka, Nick dropping it from the second floor) they will replace it for no charge. Check with your support teacher, as they should have access to this software and will make any laminated icons you might need for home use. In addition, check with your local library and agencies like Easter Seals to see if they have it available to check out.

Most of the time Nick puts the pictures and icons on a velcro strip and hands it to the caregiver. However sometimes he gets a little more creative. 🙂

“Hey Mom, I’ve laid out my plan for what I want to do now”……..

Poor Kitty, nap interrupted………..

The next re-evaluation came in middle school. The team decided to try Nick on a voice output device. He was given a set amount time to just play and stim on it. But then, he began to understand that the device was to be used to communicate. There are all sizes and the cost for these can be thousands of dollars. Nick’s was around $8,000 dollars. The Dynavox V was the Cadillac of AAC (Augmentative and Alternative Communication) devices that would grow with Nick. This was provided by the school district. We found out later that the Dynavox V had major drawback. It was that it was heavy and bulky.

Dynavox V or as we named it “The Brick”……

After a few years with the Dynavox, We looked into other devices that would be more portable and less obtrusive. We ditched the “Brick” and moved to an iPod touch loaded with a program called Touch Chat. Another popular program is called Proloquo2Go. I like Touch Chat because you can upload your own pictures as well as using theirs. Both programs are excellent. The iPod is protected and enhanced with sound using a case with speakers- (iMainGo Speaker case.)

In essence, it is an electronic version of his PECS communication book. He still needs a lot of practice using it properly without stimming on it. The jury is still out on whether this will take over as his primary means to communicate.

Touch chat screen….

Finding the means to help Nick’s communicate continues to be a work in progress. If he is on the phone with you he might say hi and your name if he recognizes your voice. But mostly he will smile and wave.

He continues to use some verbal speech, sign language, Pecs picture book and the iPod Touch Chat. It’s like walking down the stairs. Sometimes you need to hold onto the handrail and sometimes you don’t. All of these communication methods are his handrail that support and facilitate his speech.

I have learned that there is no perfect way to help with speech. All of these serve him and have their drawbacks. It’s always good to have the backup PECS book in case the batteries die or the device goes for an unexpected dip in the pool. I hope this gives you some insight into the evolution of Nick’s way of talking through the years. That’s what is in my noggin this week.

~Teresa 🙂

Government/Legal Matters Related to Special Needs

Blog #44~Who’s in Control?

Posted on March 4, 2013March 4, 2013 by Teresa Unnerstall

Blog #44~ Who’s in Control?

Last Thursday a longtime friend that I worked with at the Austin YMCA posted a question on Facebook. Jim P. has been on a spiritual journey and asked how everyone deals with control? Ironically, I could not have been in any less control than that moment. Not having control is scary. It means you have to leave things in the hands of others. It requires you to have faith that God will take care of you and the problem at hand. Nick has been receiving state funding through a child based waiver under the umbrella of Medicaid. The funds are used for respite care which allows me to still teach my classes and go out and have a life on occasion. The Department of Human Services (DHS) had sent out a renewal form that I filled out and sent certified mail weeks ago. Bases covered, I was on top of my game. Not so fast…..

I called DHS the day before the end of the month to check on the status of the renewal.

“The lady I talked to a few weeks ago said she would change my son from child to adult waiver in the system pending the renewal form being sent in.”

DHS operator replied, “No she can’t do that for you. A new form must be submitted.”

Oh crap, I am going to lose the home based waiver and have to get back in the queue*. This could take months. Last time it took 9 months to process, I am F’d!

I hung up the phone, confused and wondered why I had not been informed about this. I immediately contacted my friend Nancy Wilson that I’ve known through The National Association for Down syndrome (NADS.) She has a consulting business called A New Ray of Hope, www.anewrayofhope.com. She knows her stuff on health advocacy, education advocacy and is a resource specialist. Her son, Jeremy has a dual diagnosis of Down syndrome and autism and is close to Nick’s age. Nancy laid out the facts for me clearly and succinctly:

1. DHS is a big umbrella with many programs under it.

2. Medicaid/Medical Health Benefits is a program through HFS – Healthcare and Family Services.

3. Medicaid is a requirement for any DD (Developmental Disability) services.

4. SSI (Social Security Income) is NOT a requirement for DD services

5. Medicaid is redetermined when a child reaches the age of 19

6. The respite hours is Home Based Waiver funding under the DHS Umbrella, it is a Medicaid Waiver program through the DD Division (Division of Developmental Disabilities) for which you work with a PAS agency.

7. For HFS/Medicaid you go through your local HFS office. This is COMPLETELY separate from Home Based Waiver Services through DD and also COMPLETELY separate from SSI which is through the Social Security Office.

8. Medicaid is much easier to get if you have already been approved for SSI because SSI does a thorough redetermination of benefit eligibility for developmental disabilities

9. That said, you do not have to have SSI to get the Home Based Waiver

10. Who is telling you that he will be dropped? Pact? Little City? Medicaid?

I was caught in the tangled web of government bureaucracy. It was the end of the month, and the home based waiver was ending. I had to scramble. Nancy sent me the link to fill out the application for adult Medicaid. I made a big pot of coffee, rolled up my sleeves and got to work. My only hope was to hand deliver the application into the DHS office that day so it would be stamped before his child based waiver expired. I entered the crowded, dingy office. It was jammed with over a hundred down trodden people whose glazed faces exhibited despair sitting slumped in plastic chairs. I followed the Pakistani gentleman in his native dress and waited behind him in the line. The lady in front of him held a baby and had two small children clinging to her. She was in desperate need for food stamps but was turned away. My problem seemed trite in that moment.

I stepped up and the clerk informed me that I probably wouldn’t get the adult home based waiver anytime soon since Nick didn’t have SSI income. What, that’s not what Nancy told me, again the mixed messages, WTF? She took my paperwork and looked somewhat surprised that they were in good order and fully completed with all copies attached (Nick’s birth certificate, SSI card, insurance card, checking account information and his state ID card. No he doesn’t have a driver’s license imagine that.🙂 She stamped the date February 28, 2013 and put it on top of one of the many foot high stacks of applications. I said a quick prayer as she set it on top of the pile. Please God, let this go through quickly.

Adversity can test our limits but it also teaches us lessons. What did I learn? When you feel like you aren’t getting the answers you need reach out for help. Nancy has been a mentor and resource that has helped me navigate Nick’s path filled with its cobwebs of confusion. The red tape is daunting as your special needs child becomes an adult. Moving forward we will be enlisting a special needs lawyer. Secondly, when your child with special needs turns 18 years old run, don’t walk to fill out the SSI application. I stalled having heard horror stories of the process. While I have filed for SSI just over a month ago I have no answers yet. Last but not least, never assume! Back in college I worked at Super X Drugs. Rex, (or as I called him Super Rex) was my boss. He gave me this sage advice. “Never assume, it makes an ASS-out of U- and ME.”

That evening Nick wasn’t feeling in control. I had forgotten to run the dishwasher and he was unloading the dishes. As I took a dirty bowl out of the cabinet and put it back in the dishwasher he lunged at me pinching my hands hard until they bled. He was mad that I was undoing his work. Later in an act of defiance he emptied out my red nail polish from the second floor.

Clearly Nick just like the rest of us wants to feel like he is in control. The last day of February was one of the worst that I’ve had in a long time. Late in the evening, I sat on the couch by the fire with a glass of wine and managed to relax and feel a wave of comfort and peace. Sometimes what you need most is to find those who can support you along with a nice glass of wine. Oh and a whole lot of cotton balls and nail polish remover.

Poor cotton balls lie there red and beaten like fallen soilders having done battle. 🙂

That’s what is in my noggin this week. Until next Monday, cheers and let me know how you handle things when you are not in control.

~Teresa

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