Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #66~Taking the Leap to a Support Group

Blog #66~Taking the Leap to a Support Group

I can’t make it there.  I have two boys that are 19 months apart under the age of two.”

“I have it under control.”

“We are okay.  There is no need to reach out to the local Down syndrome support group.”

“I have no energy to get out in the evening to make it to a meeting.”

Those are some of the excuses I have used.  It’s hard to take the leap to a support group.  Over the years friends and teachers have offered names and phone numbers of other parents whose children had Down syndrome.  I found it difficult to make those cold calls as well.  It’s not easy to open up and be vulnerable around people you don’t know.  Every parent handles the diagnosis of a child’s disability in their own way.

Eventually I did reach out to the local Down syndrome support group.  What I found was a community of individuals who had been on their own roller coaster of emotions.  They had dealt with uncertainty and doubt.  They had experienced anger, fear, worry, sorrow and guilt.  These parents offered encouragement and reassurance.  In addition, support groups can provide a forum for sharing feelings and concerns as well as providing information, advocacy and resources available.  See more information at: http://www.ndss.org/Resources/New-Expectant-Parents/Finding-Support/#sthash.dTRJb4bF.dpuf.

When we moved out to the east bay area outside San Francisco we didn’t know anyone.  The Down Syndrome Connection: http://www.dsconnection.org  provided resources, after school classes, social events and an invaluable kinship.

5 Year old Nick with his buddy playing in the Challenger Baseball League….

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Nick at the Down Syndrome Connection Picnic 🙂

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Before we relocated to the Chicago area twelve years ago, the local support group called National Down Syndrome Association, NADS: http:// www.nads.org,  provided a list of parents that lived in the area which we were planning to look for a home.  These parents were so open to answer my questions about school districts and gave me emotional support even before the moving truck had pulled up to our house.  NADS continues to provide services and has been instrumental in making a difference with Nick having the second diagnosis of autism.  Within NADS, there is also a sub-group called “Down syndrome and More,” which holds retreats for families dealing with a second diagnosis.

Nick at the NADS Retreat….. 🙂

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Music Therapy at the NADS Retreat…..

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These days there are multitudes of online support groups and Facebook pages to reach out to.  There are several Facebook groups specific to Down syndrome and autism.  Be sure and check out my resource page for more.  As a parent I have gone through phases where I thought I had things under control.  When Nick’s body was raging with hormones during puberty he had massive meltdowns.  After talking to a few parents whose children had Down syndrome also had autism, I realized the need to get help.  I also quit being ashamed that I was a bad parent that couldn’t control my child.  By reaching out to the support groups for assistance, I found out that I was not alone.  It has made all the difference.

Help is out there, sometimes you just have to take a breath and make the leap.  That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome

Blog #65~Tour De Nick

Blog #65~ Tour De Nick

Here’s how the scene sets up……Enter Nick into the Fox Valley Park District Recreation Center with bike helmet in hand walking appropriately down the corridor. He gives the queen wave (his signature hello to patrons passing by). Great start, yes! 🙂 We got there early, and waited in the viewing area.  Without warning, Nick suddenly hurled his helmet at the receptionist.  I threw my hand up trying to deflect it, but missed.  His helmet narrowly skims the side of her face.  This is shaping up to be a long week…. I Can Shine- Lose the Training Wheels Bike Camp… Hmmm, what the hell was I thinking?

I was thinking that after the success of his scuba experience that maybe I should try to expand his horizons.  Check the May 2013 archives to read about this in Blog #53~Scuba Diving, Really?   Click here and check it out:  https://nickspecialneeds.wordpress.com/2013/05/06/blog-53scuba-diving

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Had I been limiting my son’s potential due to his dual diagnosis of Down syndrome and autism?  It was time to try something new and bike camp seemed like a good plan to move him forward.

At the parent meeting the staff went explained of how the week would go. Approximately 80% of the individuals who participate in our iCan Bike programs ride a two-wheel bicycle independently by the end of our five-day programs. The remaining 20% of these individuals make tremendous progress towards this goal and leave our programs accompanied by parents and/or siblings trained as ‘spotters’ to pick up where we leave off!  The bikes used are lower so that the child’s feet can easily touch the ground upon stopping.  Roller wheels are put on the back to better aid in balance.  As the week progresses the wheels are changed out to wean the rider off and get them on two wheels.  For more information visit, http://icanshine.org.

Armed with a task strip of images we proceeded…..

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Day 1:

Nick entered the venue along with 7 other kids who have special needs.  Some were hesitant to get on the bike right away.  The volunteers managed to get the helmet on him, then Nick proceeded to do a stop, drop and plop on the ground.  After some coaxing he finally got up and sat  on his designated bike with roller wheels on the back.  Getting started pedaling was tough and he is unable to balance.  He couldn’t steer at all.  The bike began to shift back and forth across the tennis court like a metal ball bouncing off the bumpers inside a pin ball machine in slow motion.   I cringed… A turtle could have beaten him easily down the court.  He stopped often and I could see him pinching his cheeks (a sign that he is frustrated.) Through the glass I could tell he was cursing too.  I took off to buy him a Sprite to use as a reward each time he made a lap around the courts.  75 minutes each day for 5 days, I wasn’t sure this was going to work out.

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Day 2:

I pulled into the parking lot and Nick began to clap.  Whew that’s a good sign. 🙂 Nick accepted the helmet much better.  He was able to handle more laps around the tennis court going a bit faster and seemed to pinch his cheeks less. It was great to see him ride the tandem bike and stay in sync with the staff member behind him. Reward for the day, Taco Bell!  I am going to put 5 pounds on easily this week, ugghhh

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Day 3:

The staff announced that this is the most exciting day of the week.  “Today is launch day.”  🙂  “Many of the kids will be taking off on two wheels!”  Parents were encouraged to come in and cheer, take pictures and celebrate.  I got a lump in my throat seeing these kids take off with success. Pride was written across the smiles on their faces.  Nick was making improvements but still had trouble pushing the pedals.  He worked on the trainer with a goal to pedal ten times in a row.  The staff reported that he was able to balance better and was starting to steer and turn more on his own.  However, he would be a failure to launch.

Day 4:

This was move in day for his older brother, Hank who attends Northern Illinois University.

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Nick’s respite worker, Lara said he was up on two wheels with the spotters close at hand.  He had a good day and enjoyed lunch at McDonalds afterwards.

Day 5:

Nick started out on the trainer to work on pedaling technique.  He road the roller wheel bike, tandem bike and the 2 wheeler bike with a handle on the back.  I took a video of him on the 2 wheeler bike. He was so slow that the footage looked like a still frame picture.  Nick was the last remaining cyclist to head outside and the only one who didn’t launch on two wheels. The iCan Ride staff recommended we put him on a 24 inch cruiser bike with a handle attached to the back.  She felt he made progress balancing and turning and encouraged him to come back next year. The  Fox Valley Special Recreation Association coordinator  gathered the kids together for a group picture.  Each child was rewarded a special license to ride.

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I am glad that Nick had this experience.  My goals for the week:

  1. Give him something to do that was structured and physical.
  2. See if he could pedal so we could possibly look into getting a tandem bike.
  3. Wear him out so he wouldn’t drive me bonkers while he is out of school. 🙂

Nick made improvements and endured more each day, plus he didn’t have any meltdowns. Did he enjoy it as much as the scuba experience? No, but at least he tried something new and it was not an epic fail.  Will we do it again?  That depends on whether he pulls those bike camp icons out of his picture communication book and requests it.  You never know until you try…That’s what is in my noggin this week.

~Teresa

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 🙂

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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 at 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 (www.socialsecurity.gov).  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!  🙂

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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.

~Teresa

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

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 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 Autism, Fun Side of Nick

Blog #63~Furry Family Members

Blog #63~Furry Family Members

It is with great sadness that I begin this piece by telling you that our cat of 17 years has passed away.  She has been such a part of our family history and will be dearly missed.

I posted this picture on Facebook last Saturday and received so many thoughtful sentiments.  I often post pictures and updates about Miss Mellie.  It appears she had quite a following……..

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I loved her from afar.”

“She warmed the hearts of many of us on Facebook too.”

“Miss Mellie stories have been endearing and a bright spot in my week.”

“We take in theses wonderful animals, love them, take care of them and they become part of our family. Part of our daily routine, part of our home and part of our life. When they are gone it is like an emptiness that is hard to explain to someone who doesn’t have a pet. But those of us who do…we understand your pain and wish we could help you. miss seeing her face.”

“So sad, I will miss the Mellie stories.”

“Oh, I am so sorry. A furry loss is a tough one.”

Our son, Nick who has Down syndrome and autism had a lot of fun with Miss Mellie over the years.  If you are a regular follower of the blog you know about a lot of the pranks he has pulled on her.  Nick’s antics have given me enough material to write two blogs, Stuff on My Cat (Blog #33 located in the December 2012 archives) and Stuff on My Cat, Part II (located in the July 2013 archives.)  Here are the last two things he put on our sweet, gray tabby 🙂

Oh no, looks like Miss Mellie is getting some deep pressure with the therapy ball….

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Nick thought she might enjoy some music, rock on kitty……

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Harold makes a rough landing into the cat food.  Hardy har har, Nick 🙂

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On our cross country move from Livermore, California here to the Chicagoland area we stopped for the night in Reno. Six year old Nick decided to do a little “Magic Mike” action for Miss Mellie.  I don’t think she was too impressed……..

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A sweet moment between Nick and our cat. By the way, he hasn’t handed me the icon picture of her out of his PECS communication book yet.  But I know he will soon.  That moment will be a tearful one for me 😦

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She shared so much love with our family and friends. She adored being in Hank’s arms and seem to comfortably nestle there……

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Snuggled in with Al, she was a good lap cat…..

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She insisted on being on my lap, helping me to write 🙂

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I will miss so many things about our cat like how she follows the sun beams throughout the day and running into the kitchen whenever she heard the can opener, tuna!…….

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How she parked herself in front of the fireplace during the winter months waiting for  the hearth to be prepared for her……

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Most of all I will miss our lap time together, the sound of her purring, her warmth and the love that she gave all of us. Thank you KB (my cat loving friend), for framing this picture and giving it to me last Christmas.  I will cherish it always…….

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A younger and heavier Mellie that my sister, Laura gave me… Aaahh she’s so cute…..

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My friend Jimmie P. shared this quote on my Facebook wall…..

There has never been a cat who couldn’t calm me down by walking slowly past my chair.”
~Rod McCuan

That’s what is in my noggin this week.  Rest in peace, Miss Mellie.

~Teresa

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