Posted in Government/Legal Matters Related to Special Needs

Blog #44~Who’s in Control?

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,  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.

photo (116)

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.

photo (115)

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.



Posted in Autism, Speech and Occupational Therapy

Blog #30~ 7 Senses of the World

Blog #30~ 7 Senses of the World

This week I want to expand more beyond the one aspect of “stimming” which I wrote about last Monday.  I want to dive in deeper into the sensory processing machine.  Admittedly, this subject has always turned me on.  Over the weekend Nick and I attended the NADS (National Association for Down Syndrome) Retreat that targets a special group that deals with more than just Down syndrome.  The hot topic was Sensory Processing Disorder (SPD) was formally called Sensory Integration Disorder.  Katie Frank, MHS ORT/L who works at UIC Family Clinic in Chicago was our presenter who outlined a summary for us.  Thanks Katie for shedding more light to this topic.  Here is my perspective about this subject.

In a nutshell, SPD happens in the central nervous system.  Imagine the pathway from the brain to the 7 senses as a superhighway.  We actually do have 7 senses which include sight, hearing, smell, taste, touch and two others.  No one talks about the other two senses, but they are so important. They are movement-based senses and are known as Proprioception (feedback from the muscles and the joints) and Vestibular Processing (feedback from movement of the head which tells us whether we are right side up or down in orientation.)

When a person has SPD, the flow is disjointed and the brain is unable to do the job of organizing sensory messages. Imagine a superhighway… You know that wide solid blue line on the map that flows effortlessly at 70mph+.  That is how the messages should transmit from the brain to the body. But what if it looks like the tiny grey line on the crumbled map you are trying to unfold and read.  That crooked road that breaks off and leads you into a desolate farm land area trundling at 15 mph…… THAT is SPD!  A formal diagnosis cannot be given by an occupational therapist but they can do assessments and make recommendations to a doctor.  The diagnosis is given when the problems impact the ability for a person to function in daily life.

Now that I have the scientific stuff laid out, the rest will be some concrete examples of what having SPD can look like and what supports can be put in place to help a person who has these issues.  There are three types of sensory modulation problems:

Over-Responsive (formerly known as Hyper sensitive) a person may avoid touching, sights, sounds, smells and certain tastes as they register them too intensely.  If you have ever seen a child with autism walking in a noisy venue like the mall with headphones on or their hands over their ears they are most likely trying to block out the noise for this reason. Their threshold of handling stimuli is much lower. I picture the character of Cameron Diaz’s brother in the movie “Something about Mary.”  He sported headphones all the time and banged his head when confronted with too much stimuli.  For Nick it’s not sound but rather the sense of touch when it comes to haircuts and toenail trimming (see Blog #22~  Grooming 101 for specific information about this topic.)

Under-responsive (formerly known as Hypo sensitive) is where a person may take longer to feel input, aka a sensory disregarder.  They may be unaware of the feeling of messy face or hands and not recognize touch or the feel of an object being dropped.  This person may be more socially withdrawn and may need coaxing to get engaged into the world.

Sensory Seeking   a person goes out of their way to find more input in their world.  They crave stimulus.  This for the most part IS Nick’s world.  🙂 Often when he walks his feet will hit the ground loudly.  His “heavy walking” as we have termed it is seeking extra feedback.  If there is a puddle he will step hard into it to get the splash to seek input.  He chews on inedible objects in particular his sleeves.) Nick also likes to push buttons on the phone intercom, microwave and often turns up the volume on the TV to 96!  He delights in turning on the water faucets full blast.  So you see he is looking for more input in various ways. Check out Blog # 3~ “Getting your Goat” to get a complete picture and list of things that he has gotten his hands on and dumped out.

So knowing the types of Sensory Modulation is all fine and dandy. But what can be done to address these problems?  That is where the Sensory Diet comes in.  An occupational therapist can assist with putting supports in place to help with this.  In a typical day we all strive to stay at a certain level of function where the keel sails evenly through the water.  Not too hyped up or sluggishly dragging, right?

If a person is under-responsive it is necessary to include “alerting activities” which will give them a boost.  These might include bouncing, jumping, hanging from monkey bars.   In Nick’s day he may need to take a motor break and go jump on the trampoline or get on a swing to rev him back up.  Using a special nubby cushion can help keep a person alert while working at a desk.

Organizing activities  can also help a person who is having trouble attending to a task.  For some people it may be deep pressure or heavy work that helps.  Others may need something more oral motor related.  “Calming activities”  help decrease the sensory over-responsiveness and might include deep pressure, joint compressions, massage, gentle rocking, rhythmic movement, taking a bath, muted light, etc.  Bottom line, it depends on the individual. Some senses may/or may not be more sensitive than others.  The parent can do some detective work to see what is needed and how their child reacts then work with an occupational therapist who will tailor a sensory diet to fit their needs.

Here is a list of heavy work activities/proprioceptive activities that may help regulate a child’s arousal level, concentration, ability to sit still and attend to a task or fall asleep.

Gross Motor Activities:
Carrying objects such as groceries, animal backpacks, a fanny pack, stacking or moving chairs/books, and a full watering can/hose, basically ANYTHING with weight to it.

Thanks Kendra Convery, (Nick’s OT from California) for sending this picture of Nick in the balls. Isn’t he cute 🙂 A ball pit can awaken the senses and provide good input on their body position and balance (which addresses proprioception and the vestibular processing.)   

Deep Pressure ideas:
Wearing a weighted vest, weighted hat, or weighted shorts, wearing wrist or ankle weights, using a weighted pad on lap or across the shoulders.  It could also be something like a long door draft or even a toy snake…….

Pushing or pulling objects and activities:
Toy/regular shopping cart, laundry basket, kid’s wagon, raise/lower flag at school, tug of war rope, toy/regular vacuum, wrestling, hippity hop ball.

Sandwich/ Squishing activities:
Make a child “sandwich” between floor pillows, cushions or bean bag chair, roll child up in mat or heavy blanket as a “hot dog” – bear hugs.

Siblings and pets make great deep pressure and wrestling pals…..

Nice stereo system….. and all those cases filled with my fitness cassettes 🙂

Oral Motor Activities:
Resistive sucking using items such as through thin curly straws/krazy straws sports bottle with long straw, lollipops, blowing bubbles, sour/citrus or salty flavors can alert the mouth.

We all have aversions certain senses. It might be something tactile like tags on clothing that personally drives me nuts.  Tactile issues can be addressed with the Wilbarger Protocol technique (most known as the brushing program.) Many parents of children with autism have reported that their children have responded positively to the Wilbarger Protocol technique.  This is a brushing program that should be administered by an occupational therapist.  Reports have shown a reduction in sensory defensiveness, as well as improved behavior and interaction. Many adults with autism have also reported reduction in sensory defensiveness, decreased anxiety, and increased comfort in the environment through the use of this technique.

We did this program with Nick for many years when he was little….

Certain textures may be unpleasant or down right unbearable.  Personally I can’t stand anything globby and lumpy like tapioca pudding, cottage cheese and flan….. blech!  My sister in law, Ali cringes at anything in the green slimy family like olives, artichokes, avocados, anchovies or hearts of palm. So what is it that you can barely tolerate?  Is it tactile, a certain smell or noises? Do you love loud music or does it overwhelm you? Do you sprint to the roller coaster rides or shy away from them?

The faces say it all…. Hank looks like he is facing the jaws of death up front while Nick is experiencing pure joy!  The rest of us are somewhere in between.  That’s Ali and my niece Anna in the back on the Splash Mountain ride….. 🙂

Is there a type of clothing that you are sensitive too? What calms you….. any certain genre of music, exercise, maybe the sound of a fountain? I would love to hear from you on this.  I plan to write another story closer to the holidays when we are all bombarded by stimulus overload.  I hope this week you gained some insight into how the senses are such a huge part of how we navigate the world.  That’s what is in my noggin this week.  Take a look around your world and let me know what you see that overwelms you or helps to keep you calm. You can e-mail them to me at:  Cheers and see you next Monday!


****** News flash********** OOOOPS he did it again.  #27 Fire alarm pull over the weekend in the hotel at the NADS Retreat. 

It was like a land mind in the corridor of that hotel, how could ne not resist…. and speaking of the ultimate sensory seeking…. yup that would be Nick’s….. The rest of us are just trying to keep up! 🙂

Posted in Down syndrome

Blog #26~ Down Syndrome Awareness Month!

Down syndrome awareness month

Blog #26~ October is Down Syndrome Awareness Month!

Each October everything turns pink for breast cancer awareness.  Even the NFL players and referees wear pink.  Everything is illuminated including the Tower of London, The White House, Eiffel Tower, Empire State Building and even Rio’s iconic Christ the Redeemer statue is glowing pink.

But did you know that October is also Down syndrome Awareness Month? How much do you know about Down syndrome? Here are a few facts about Down syndrome courtesy of The National Down Syndrome Society (NDSS):

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
  • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
  • There are more than 400,000 people living with Down syndrome in the United States.
  • Down syndrome occurs in people of all races and economic levels.
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  • A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
  • People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

My boys, Hank and Nick 🙂

Hank Nick 001 (2)

Since this is about awareness, it is important to educate people on the appropriate language that should be used.  People with Down syndrome should always be referred to as people first. Do not say- “a Down syndrome child.” Instead say, “a child with Down syndrome.”  Here are three more improper phrases to avoid are “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”  Finally it should be said “Down” and not “Down’s.”  Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.

Down syndrome keep calm

Here are some great links promoting Down syndrome:

* NDSS Buddy Walks take place all over the country raising over 11 million to support local and national programs.

*Times Square jumbotron kicks off with a special Down syndrome awareness video.  Their website is at

*The National Down Syndrome Congress (NDSC) sponsors their campaign called, “More Alike than Different.”  Check out their website at

*Here in the Chicagoland area, the National Association for Down Syndrome (NADS) provides bookmarks and posters that can be distributed in the community to schools, libraries, book stores and businesses.  This group is based in Chicago.  For more information go to

*GiGi’s Playhouse is another wonderful group that started in the suburbs of Chicago and has grown to expand around the country. GiGi’s Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community.  They have a wonderful calendar and notecards available for purchase. More information is at

*One of my favorite websites is  Noah is the cutest thing and his dad does a superior job of presenting his son in a positive light.

I hope this week provided some further insight and information about Down syndrome.  That’s what is in my noggin this week.  Most of us have been affected with or by breast cancer in some way.  I hope this month raises awareness and more funding for breast cancer and Down syndrome.  I would love to hear how a person with Down syndrome has touched your life.

My son, Nick rocks that extra chromosome! 🙂

best buddies dance

~Teresa 🙂