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  🙂

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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……

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

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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……

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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 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.

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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 🙂