Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Government/Legal Matters Related to Special Needs, IEP (Indivdualized Education Plan)

Blog #195~ Being a Firestarter

Blog #195~ Being a Firestarter

What is the difference between those bold enough to pursue their dreams and others who never get comfortable enough to ignite their lives? The doers are “Firestarters” and, because of them, the world is a much different, and often, better place.


Are you looking for a way to ignite your life and dreams?  Firestarters-How Innovators, Instigators and Initiators Can Inspire You To Ignite Your Own Life,  is a new book released last week; that will help you to do so. As I wrote in last week’s Blog #194, Firestarters are innovators, instigators and initiators that get things accomplished.  Recently I had the opportunity to interview one of the co-authors of this new and powerful book, Paul Eder along with a featured Firestarter, David Egan who is an advocate for special needs.  This week, I am sharing more on these interviews about being FIRESTARTERS!


David Egan is the first person with an intellectual disability to be awarded a Joseph P. Kennedy JR. Public Policy Fellowship, he made history by working on Capitol Hill with the Ways and Means Social Security Subcommittee.  David Egan, born with Down syndrome, is a trailblazer for others who have intellectual disabilities.

David Egan-Advocate Photo

He believes in promoting the idea of people with disabilities having special talents.  David states that people with intellectual disabilities should be included in as many sectors of our society as possible, and being featured as a leader in this book makes made him proud.  The most important part of his advocacy is to demonstrate that people like himself are Valued, Able, and Ready to work.

David Egan Work Photo         David Egan swimming

“We are citizens that matter and we belong in our community.” -David Egan


“People with intellectual disabilities do not want pity; we want respect, inclusion, and the opportunity to reach our full potential like any other citizen.” -David Egan

Paul Eder is the co-author of Firestarters along with Raoul Davis JR. and Kathy Palokoff.  From early on, Paul Eder wanted the book to be inclusive.  He has a 6-year old son, Brady who has Down syndrome and believes his potential is limitless.  Paul says that a Firestarter is partially defined by the impact you have on others. His son, Brady has certainly impacted his life.  Paul hopes his son’s achievements go beyond and push the boundaries like David Egan.

I asked Paul how he plans to use the concept of Firestarters to help navigate his son through school and working with IEP team members? 

Paul said that, “The IEP (Individualized Education Plan),  generally taps into a number of the concepts we discuss in the Firestarters book, but the section on Accelerants is very relevant. Accelerants include: Mission-focused behavior, Cooperation, Constructive competition, sweat equity (working hard), and support seeking.”

Paul goes on to further state this about IEP’s:

“An IEP certainly focuses on the mission surrounding your child’s educational path. From a cooperation perspective, the IEP defies all the supporting partnerships that are necessary to propel his success.  All of the IEP goals are measurable, which gives it a competitive flair. We want the goals to be challenging but not impossible, and we want to be able to compare his progress against some standard of success (e.g., grade-level expectations). My son has a daily behavior log where his social and academic behaviors are tracked. From this sheet, we are able to tell whether he is putting in his full effort and devoting the sweat equity needed to learn. Support-seeking is an obvious one.”

“The IEP team is a support structure in itself.  As parents, we can’t be afraid to ask the questions needed of the team and push for the supports required to ensure his success.” -Paul Eder

I asked Paul how can someone support the Firestarters in their lives, especially those with potential but who may have special needs?

In the book we define 4 types of supporters based on the research we conducted:

1.Nurturers listen and help you follow through with your ideas.
2.Motivators get you moving. They are people like Tony Robbins who exude an energy that make you want to be a better person.
3.Illuminators are the teachers in your life who help you grow socially and intellectually.
4.Protectors are the people who defend you when others won’t.

A FIRESTARTER, seeks support to fan their flame, and finds ways to limit the influence of Extinguishers.

As we begin 2018, what do you want to accomplish?  Find the people who can support you and don’t allow the extinguishers to have power over your life.  We’ve all met FIRESTARTERS, and seen what they’ve accomplished.  They create, disrupt and start things.  The book FIRESTARTERS  interviewed successful entrepreneurs, CEO’s, organizational leaders, advocates and forward thinkers from a variety of professions to find out what makes them tick.  There are step by step guides to teach you how to join the ranks in whatever you want to accomplish.

For more information about FIRESTARTERS click here:

Thank you to Paul Eder and David Egan for sharing your inspiring stories of being FIRESTARTERS, who make the world a better place!  That’s what is in my noggin this week.

~Teresa 🙂 





Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Government/Legal Matters Related to Special Needs

Blog #194~ Firestarters

Blog #194~ Firestarters

What is the difference between those bold enough to pursue their dreams and others who never get comfortable enough to ignite their lives? The doers are “Firestarters” and, because of them, the world is a much different, and often, better place.

Recently, one of the co-authors of a new and powerfully motivating book, Paul Eder reached out to me to do an exclusive interview about Firestarters- How Innovators, Instigators and Initiators Can Inspire You To Ignite Your Life.


There is a big difference between people who MAKE things happen and those who only THINK about making an impact.  So many people have dreams, yet few are willing to take action.  The authors of Firestarters set out to find the “secret sauce” providing pragmatic advice for readers to ignite the qualities from successful entrepreneurs, CEO’s, organizational leaders, advocates and forward thinkers from a variety of professions.  Co-Authors Raoul Davis JR., Kathy Palokoff and Paul Eder did extensive research interviewing and studying hundreds of people who have all been a catalyst for change.

In my interview with co-author Paul Eder, he states that a Firestarter is someone who makes an impact, someone who presses forward in the face of challenges that would cause others to run the other way.

There are 3 types of Firestarters in the book:

*Innovators create things.

*Instigators disrupt things.

*Initiators start things.

All three types are bonded together by the great impact they have on other people and the world by creating, disrupting and starting things.  So, how do you know if you’re an Innovator, Instigator, or an Initiator?  The book provides a quiz that you can take, but the short answer is to investigate both what motivates you and how you interact with others.

*Do you like to explore new ideas for the sake of exploring them? Do you come up with your own pet theories of how the world works? You may be an Innovator.

*Do others always call you out for debating too much? Do you strive to be different and do things in a way no one has done? You may an Instigator.

*Are you constantly moving? Do you have the energy of 10 thoroughbreds and need to sleep only 4 hours a night to be fully effective? You may be an Initiator.

Firestarters aren’t constrained to one type. Different situations may require you to act more like an Innovator. Others require you to be an Initiator and just get things done. Firestarters are amazing in that they are flexible to tap into all three types as needed – when most people would be more likely to stick to their default type, according to Paul.

From early on, Paul Eder wanted the book to be inclusive. He has a 6-year old son, Brady who has Down syndrome and believes his potential is limitless.  The Firestarters concept  applies to CEOs of mega corporations as well as PTA moms. There are interviews John Sculley, a former CEO of Apple and present his profile at a similar level of prominence of David Egan, who has Down syndrome and is a self-advocate who has single-handedly re-defined the perceived capabilities of people with intellectual disabilities.

David Egan is the first person with an intellectual disability to be awarded a Joseph P. Kennedy JR. Public Policy Fellowship, he made history by working on Capitol Hill with the Ways and Means Social Security Subcommittee.


In my interview with David Egan, he showed great passion about being an advocate with an ongoing commitment that never ends. His dream is to help people with intellectual disabilities.  All of his jobs and activities have been very important. However, being  selected as the first person with intellectual disabilities to serve as a JP Kennedy JR. Public Policy fellow was an honor and a breakthrough.  Previous fellows were doctors, professors, parents, educators or with physical disabilities but David made history and is proud to follow in the vision of Eunice Shriver, the founder of Special Olympics. She believed that we belong and we have the same rights as any other citizen.

Paul Eder feels his 6-year old son Brady, who has Down syndrome will follow the path forged by David Egan, in not allowing a label to define his future. A diagnosis is not a destiny.  Down syndrome isn’t a determinant of his son’s potential.  This is a powerful message on never setting limits!  This message has resonated with me for the past 23 years in raising my son, Nick- who has a dual diagnosis of Down syndrome and autism.

Next week, I will share more of my interviews with Paul and David with their great insights on being a Firestarter.  Here is a review of this book from Forbes magazine:  If you are looking for a way to set your goals in motion and take action for 2018, I highly suggest reading Firestarters!  

This book will be released tomorrow, January 9th, click here to learn more:


Is this the year you are going to MAKE things happen, or just think about it?  What things or people threaten to extinguish your fire?  Set your goals and be a Firestarter, that’s what is in my noggin this week.








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

Autism Awareness Month

Autism Awareness Month

autism awareness

This week I am posting a piece written last April about Autism Awareness Month.  Click here to view @…in-68-children/

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



Posted in Down syndrome, Government/Legal Matters Related to Special Needs, Uncategorized

World Down Syndrome Day


This Saturday, March 21st is World Down Syndrome Day!

World Down Syndrome Day (WDSD) is a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder (  

Big Guy Nick 🙂


Help me spread the word on social media.  Click on my blog to find out more about WDSD @…n-syndrome-day/

Thank you for reading and sharing this information about World Down Syndrome Day.  That’s what is in my noggin this week.

~Teresa 🙂


Posted in Down syndrome, Government/Legal Matters Related to Special Needs

Blog #89~ World Down Syndrome Day

Blog #89~ World Down Syndrome Day

The United Nations official recognition of World Down Syndrome Day is March 21st. “Each year the voice of people with Down’s syndrome and those who live and work with them join together to focus attention on what it means to have Down syndrome and how those with the condition play a vital role in communities across the world.”  Click on the site below to view events to raise public awareness to create a single global voice

WDSD Socks

According to Wikipedia, “Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.”

trisomy 21

The Secretary-General of the United Nations Ban Ki-moon said on 21 March 2012, “On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”

keep calm

World Down syndrome gives this message on it’s website, “People with Down syndrome face many challenges as children and adults which may prevent them enjoying their basic human rights. Many people often fail to understand that people with Down syndrome are people first, who may require additional support, but should be recognised by society on an equal basis with others, without discrimination on the basis of disability.”

Big Guy, Nick 🙂


My son Nick, is a young adult who has Down syndrome.  He has so much to offer and has brought so much joy to the world.  He’s made me a better person in the process.  If you would like more specific information on Down syndrome click here @…wareness-month/

Please help me spread the word about World Down Syndrome this week on social media.  That’s what is in my noggin this week. 🙂


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

Blog #79~Reboot 2014

Blog #79~Reboot 2014

happy new year 2014

The New Year gives us a clean canvas to start over.  It’s an opportunity to paint a fresh picture.  The past year was full of many challenges and changes.  I am ready to re-boot and here’s why……

2013 started out good until Nick’s birthday in February.


The heater broke……. We had to bundle up for the celebration….. Here I am with Nick’s grandparents Jim and Theresa….. Brrrrrrrr  🙂

photo (115)

The first task was to tackle the annual report for “Continuance of Guardianship” of Nick.  It’s a two page form along with a yearly expense report.  As long as you submit this a month before the hearing, there is a good chance it will be approved.  Then, you won’t have to appear in court before the judge.  So far so good…..but not so fast…….


I got a notice from the State Department of Illinois stating that Nick’s benefits would end on his 19th birthday.  I would have to switch over from the child waiver (94 case) and apply for an adult waiver (93 case).   Somehow the PAS agency that I work with failed to inform me ahead of time.  The application process was daunting and the paperwork alone practically killed a whole rain forest.  Nick’s funding was lost for several months which meant we had to pay his respite workers out of pocket.  It took awhile and a lot fumbling through the red tape but eventually the adult waiver was approved.

See Blog #44 located in March 2013 archives for more about this debacle.

red tape documents

During the course of doing all this, I applied for SSI for Nick.  SSI (Supplemental Security Income) is available for persons who have a disability.  Nick has Down syndrome and autism and certainly qualified for this aid.  The application procedure was straight forward, done online and much easier than the process for state funding.  Again, it took a few months and a scheduled phone interview before Nick was able to receive funding.  What I have learned through this past year is that you have to stay on top of things when you are managing an adult with special needs. It’s definitely more time consuming to handle his affairs now then when he was younger.

Early spring brought on several upgrades to the house including  a new roof and siding.  Then in April, the Chicagoland area experienced major flooding. The sump pump couldn’t keep up and the water poured over submerging the basement.


It took several months to get everything back in order. The garage and  dining room became the “catch all” in the meantime. One word…….. “Mayhem!”


In May, Nick graduated from high school, what a milestone for big guy!


During the summer the dry wall was restored, walls freshly painted and new carpeting installed in the basement. I was thankful for my in-laws, Jim and Theresa who helped out with putting things back on the walls, shelves and in the bar area. They were instrumental many times  helping out in 2013.

Vacation was spent in the Outer Banks, NC, it was just what we all needed.  Upon our return, Miss Mellie our beloved cat of 17 years was in poor health.  We had to say goodbye to her.

Rest in peace Miss Mellie……

photo (115) (2)

In the fall, Hank returned to Northern Illinois University and moved into an apartment.

photo (122)

Nick started the post-secondary transition program called STEPS, which he will attend until he is 22.   During the fall, new carpet was installed in the rest of the house.  A fresh coat of paint was put on both the boy’s bedrooms. Twelve years and two boys, uh….. let’s just say they needed a complete overhaul!  Carpet installation is quite an ordeal. You have to pack everything up and clean out all the closets much like moving out of a house.

Fresh paint and carpet, sweet! Nick approves……

IMG01 (2)

Within a week after the carpet was put in, Al was scheduled for shoulder surgery.  40+ years of hard core tennis had taken a toll and the USTA Sectionals in August really did it in.  The surgery was lengthy and the recovery was painful. The worst is behind him; his arm is out of the sling with 6 months of rehab before he can pick up a tennis racket.


2013 was challenging, painful and filled with many changes.  The house is restored and things are nearly put back together.  I am ready to re-boot and greet the 2014 with a clean slate.  Mostly, I am looking forward to settling down, seeing what the new year will bring, and get back to writing about Nick’s world without interruptions.  That’s what is in my noggin this week.  🙂


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

Blog #64~When Your Child With Special Needs Hits Adult Age

Blog #64~ When Your Child With Special Needs Hits Adult Age

What happens when a child with special needs hit the age of 18?  While other parents are busy visiting college campuses and searching for extra-long sheets for the dorm bed, a parent with a child with special needs is going down a different path.

Nick’s legs are long and hairy like a man, but he still enjoys sitting like a kid.  That along with watching Disney movies and Thomas the Tank Engine….. Welcome to Nick’s world 🙂


Our son, Nick has Down syndrome and autism.  He is unable to take care of himself and live independently.  When he turned 18 years old we had to file with the court to become his legal guardian.  This process involves a trip to the courthouse to fill out paperwork, pays some fees, secure a court date and then appear in court before a judge with your child. We did not use an attorney but the advantage would be that you get in the queue faster.  Each year you are required to submit an annual report, (available from the county courthouse website), 30 days before the yearly court date.

The next step was to apply for SSI (Supplemental Security Income.)  Supplemental Security Income (or SSI) is a United States government program that provides stipends to low-income people who are either aged (65 or older), blind, or disabled. It is administered by the Social Security Administration and funded from the U.S. Treasury general funds, not the Social Security trust fund.  The application process can be done online (  Once this is processed, a phone interview is scheduled where the application is reviewed and verified.  Determination of how much the stipend will be is based on the applicant’s income, residency/ living arrangement, and resources.

The next item of business in our state was this;  when a child with special needs turns the age of 19 in the state of Illinois, it is required that you apply with the Department of Human Services (DHS) for the adult waiver which covers medical benefits and funding for respite care.  Nick had been receiving state funding through a child based waiver under the umbrella of Medicare.  The funds are used for medical benefits if needed and respite care which allows me to still teach my classes and go out and go out and have a life on occasion.  It is essential to do this before the end of the month of the child’s 19th birthday.  I found myself tangled up in some major *red tape not realizing this.  Be sure and scroll back to Blog #44~Who’s in Control? ( scroll down the right side to the March 2013 archives) for the full story about that debacle! Spoiler alert in case you missed Blog #44 the first time….. oh my!  🙂

photo (116)

Managing a child over the age of 18 years old has become a part time job.  Every month, all the receipts on Nick’s expenses have to be entered on a spreadsheet to manage his checking account. If the account gets above a specified amount, SSI will be denied.  Each year the annual reports and accounting records have to be reviewed by the county judge and the Social Security Administration. The matters associated with becoming an adult special needs citizen is serious business.  Staying on top of things is essential.  Many school districts offer transition fairs and provide guest speakers who offer valuable information regarding how to navigate through the hoops of bureaucracy.    My advice is to take advantage and learn all you can before your child hits adult age. Oh, one last note~ All 18-year-old males must register for the draft, that’s right even those with special needs. The image of Nick wearing a camo uniform holding a M-16, priceless. 🙂 That’s what is in my noggin this week.


*Red Tape is a derogatory term for bureaucratic methods, derived from the fastening for departmental bundles of documents in Britain. 

red tape documents

 According to Wikipedia:

The origin of the term is somewhat obscure, but it is first noted in historical records in the 16th century when Henry VIII besieged Pope Clement VII with around eighty or so petitions for the annulment of his marriage to Catherine of Aragon. A photo of the petitions from Cardinal Wolsey and others, now stored in the Vatican archives, can be seen on page 160 of “Saints and Sinners, a history of The Popes”, by Eamon Duffy (published by Yale University Press in 1997). The documents can be viewed rolled and stacked in their original condition, each one sealed and bound with the obligatory red tape, as was the custom.

It appears likely that it was the Spanish administration of Charles V in the early 16th century, who started to use the red tape in an effort to modernize the administration that was running his vast empire. The red tape was used to bind the important administrative dossiers that had to be discussed by the Council of State, and separate them from the issues that were treated in an ordinary administrative way, which were bound by an ordinary rope.

All American Civil War veterans’ records were bound in red tape, and the difficulty in accessing them led to the modern American use of the term,[5] but there is evidence (as detailed above) that the term was in use in its modern sense sometime before this.”

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 Government/Legal Matters Related to Special Needs, Recreation/Leisure and Special Needs

Blog #41~Back to the Future

Blog #40~Back to the Future

Candles blown out, presents opened and heads resting on pillows.  Another birthday week celebrated.  It’s was a big one for Al the 5-0 and Nick now 19 years old.  Only a day apart separates them. On the night of his birthday, Nick had crashed in his room, but he woke up and crawled in the king bed next to me.  I hesitated but pulled the covers up and nestled my cheek next to his.  I should have walked him back to his bed, but I wanted him near me. I needed to feel his warmth and hear his breath against my cheek.

Flashback to 19 years ago, Nick was held in ICU under oxygen and monitored.   I didn’t get to hold him or nurse him that first night.  I barely knew him. Small, helpless, holding on, I had no idea if he would be okay.  I wouldn’t be able to put my arms around him that night and it crushed me.

And so on the evening of his 19th birthday, I took in his breath and felt his limbs stretched long like a mature adult. I gazed at his features, the almond shaped eyes and tiny nose.  Similar they were, as if I could close my eyes and transport myself back to 1994.  And for a moment I did, to the time when I was in fear for my son’s health and whether he would be okay as the two nuns entered my room to hold hands and pray.

Exhale, I am back to the future. Slapped into what I should face.  But I don’t want to.  It’s an ugly web that is snagged with red tape. The maze of bureaucracy is daunting. First it was filing to continue to be Nick’s guardian (yes when he turned 18 we had to file to become his legal guardian since he can’t take care of himself.) Second it was to apply for SSI benefits that he qualifies for. Third, when your child turns 19 then you must contact DHS to have them switched from child Medicare benefits to adult. I only found out about this snafu the night before his 19th birthday, yikes!  I still don’t think I have my mind wrapped around any of this.

And on top of this, Nick is graduating high school in May and moving into a transition program until age 22.  I can’t say that I am ready to face the future after that.  Where will he live? Will he be taken care? Is he going to be safe and happy?  I attended a transition fair last week on the eve of Al’s 50th birthday.  I filled up my goodie bag with flyers, free pens, pads, cinch bags and sage advice. I came home and hit the wall, overwhelmed and that is where I stopped; until tonight.

After dinner out with Nick’s grandparents we came home to celebrate the birthdays. It is cold.  The heater went out sometime over the weekend. We kept our coats on as we gathered around the kitchen island.

photo (115)

As I lit the candles on the chocolate cake for Nick to blow out, I had a flashback. While we cupped our hands around the steamy cups of coffee I spoke.

“Isn’t this ironic, here we are with no heat in the house.  It is just like when Nick was born and the ice storm had knock out the power. We didn’t know what we were doing while Nick lied there in ICU or whether he was going to be okay.  And poor Hank was so scared of the fireplace; that’s all we had to heat the house.”

Al pointed out something I had forgotten. “Mom you had the oven and heaters blaring on the stove top to keep it warm, remember?”

Oh how we were lost, Nick in ICU…. No power, and a new diagnosis of our son having Down syndrome…There is more to the story….. But you are going to have to wait for the book 🙂

Back to the present, I sit by the fire writing and try to stay warm.  I pictured little Hankie just 19 months old and scared standing at the staricase immobilized, pointing to the fireplace saying, “hot.”

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Birthdays bring a time to pause and reflect back and also look to the future. I don’t have any answers on Nick’s transition plan. In a way like Hank, I have been immobilized. I am trying to push the webs out of my face, and walk through but I feel a push and pull. I need to look to the future for my son.  He is 19 and like his brother Hank who is 20 and a sophomore at NIU, there is a need to let him spread his wings. But Nick knows no fear or evil.  I can’t help but feel like I am the only one who can protect him. That’s what is in my noggin this week. For now I will continue to pray for strength to fight my way out of this tangle.



Baby nick 🙂