Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Nick~Spring Update

Nick~Spring Update

dandelion two

At last, spring has arrived in Chicago.  Here’s what Nick has been up to this spring at his adult day program.  My son is 23 years old and has Down syndrome and autism.  Each day he engages in a variety of activities at this program.

Nick continues to have both in-house and community vocational jobs.  These include stocking shelves at a local food pantry, stuffing church bulletins and cleaning at GiGi’s playhouse.  He recently got a paid job in-house, crushing and recycling cans.

nick-vacumme-gigis

Other community activities in Nick’s day program include visits to the library, shopping, and local parks.  In house, the adult day program has many enrichment activities such as art, work bins, cooking, fitness, and gardening.  They have taken the carrot and broccoli pods which were started indoors this winter, and planted them outside.  His group also bought and spread mulch on the outdoor beds.

In cooking, they’ve made shepherds pie, fruit pizza, hot dogs & sloppy joes with fries, and biscuits with gravy.  They have so much fun playing bingo and having holiday theme parties.  For St. Patrick’s Day they made shamrock shakes, and for Cinco de Mayo they made burrito bowls.  Recently, the moms were invited to his room for a Mother’s Day tea.  Nick was very excited to have me visit.

Mother's Day Tea

Outside of Nick’s adult day program, he keeps busy with his respite workers.  He enjoys going to local parks,  the library, movie theatre and restaurants.  He’s a regular at Culvers and CiCi’s Pizza each week.  We are very fortunate to have such dedicated caregivers with Lara, Jodi and Kelsey, who he loves very much.

I’ve painted a pretty and serene picture of Nick’s world this spring.  But it’s not all dainty flowers and colorful rainbows.  There are quite a few dandelions scattered in the mix.

dandelions

He continues to challenge us all with undesirable behaviors, like button pushing, throwing objects, blowing snot rockets and wiping them all over the place along with a lot of tapping and stimming.

Nick got a hold of a gargantuan tapper to stim on last week 🙂

Nick gargantuan tapper

There have been some milk thistles popping into the picture as well.  Last week he managed to add to his tally of fire alarm pulls, getting one at his day program.  So the alarm count stands today at 44 pulls.  OUCH!

milk thistle

The mix of cold weather and rain has led to some serious cabin fever this spring.  Here’s to warmer weather and getting my “one man wrecking crew” outdoors.  I’m grateful that Nick has a wonderful day program to go to, along with awesome respite workers that he loves.  He has a fulfilling life, and I get some peaceful time to myself.   Cheers to an abundance of flowers this spring, with fewer thorns.

That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

Posted in Adult Day Programs for Special Needs, Dual Diagnosis Down syndrome and autism

Blog #161~Adult Day Program Update

Nick relaxing

Blog #161~Adult Day Program Update

Nick turned 22 years old in February and aged out of public school.  He now attends an adult developmental training day program.  The program has many enriching and structured activities.  The structure is essential for my son who has both Down syndrome and autism.  Here is an update on what big guy has been doing in this program.

Each week his group goes on several community trips.  This fall, they have gone to various parks, shopping, the library and pumpkin farm.  The group plans their grocery lists of items needed for cooking and goes shopping on Wednesdays.  Thursdays are cooking days along with gardening.  Each day includes instructional learning and recreational activities. Once a month, the association celebrates birthdays and holidays, with parties and luncheons.  On Fridays, he participates in volunteer jobs in the community.  These jobs include cleaning and stuffing church bulletins, organizing at a local food pantry, and recently working at GiGi’s Playhouse.

What is GiGi’s Playhouse?

GiGi’s Playhouse is a one-of-a-kind achievement center for individuals with Down syndrome, their families, and the community. GiGi’s Playhouse offers more than 25 therapeutic and educational programs that advance literacy, math skills, motor skills and more; all of which are free of charge. All programs are based on best practices for Down syndrome learning styles, and customized to ensure individual success. GiGi’s Playhouse actually serves infants through adults. GiGi’s Playhouse is headquartered in Hoffman Estates, IL; with 15 locations throughout the United States and Mexico, with more opening soon.

Nick participated in GiGi’s Playhouse activities when he was younger.  It’s nice to see that he has come full circle, by doing volunteer work here, as a young adult.  Check out the photos of Nick in action…….

Nick working at GiGi’s Playhouse, Fox Valley location…

nick-vacumme-gigis

nick-cleaning-gigis

nick-cleaning-two-gigis

Taking a snack break after working hard…..

nick-snack-gigis

Nick takes great pride in helping out in his community jobs, around the venue of his adult day program, and at home, as well.  He looks forward to going to his adult day program, that provides a safe environment, along with a warm and caring staff.  As Nick’s mom, that gives me great comfort knowing that he is contributing to society and happy in his young adult life.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @#nickdsautism

Twitter @tjunnerstall

 

 

 

Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #6 The Nick Connection

Once upon a time, Nick only had Down syndrome.  I am unable to say with any certainty when the light switch flipped.  The symptoms of autism didn’t appear after any round of immunizations or before the age of 3.  In fact there were many symptoms that Nick didn’t have.

Autism is defined by the Mayo Clinic as, One of a group of serious developmental problems called autism spectrum disorders (ASD) that appear in early childhood — usually before age 3. Though symptoms and severity vary, all autism disorders affect a child’s ability to communicate and interact with others. Children with autism generally have problems in three crucial areas of development — social interaction, language and behavior. But because autism symptoms vary greatly, two children with the same diagnosis may act quite differently and have strikingly different skills. In most cases, though, severe autism is marked by a complete inability to communicate or interact with other people. Some children show signs of autism in early infancy. Other children may develop normally for the first few months or years of life but then suddenly become withdrawn, become aggressive or lose language skills they’ve already acquired.”

Nick has always found a way to connect with people.  Years ago, when he was around 2 years old, a woman approached me in the local Kroger supermarket.  She went out of her way to tell me how good Nick’s eye contact was and how engaging his personality was.  Countless doctors, therapists and teachers have made the same recognition over the years since then. He thrives around people and having fun with them.

Being silly pouring water on Grandma Babs

Fun with his Dad and brother, Hank

As I mentioned earlier, there was no flip of the switch.   A few things stood out around the age of 4. At the time, we lived in northern California. He started rocking more back and forth and became increasingly intolerant of having his hair cut.  Then there was the trip to Half Moon Bay where he began to pinch his cheeks hard as we walked across the coarse grain sandy beach. I suspected these behaviors were sensory related.  To make sure all the bases were covered I took him in to be evaluated for autism at age 5.  The Mayo clinic states that, “Though each child with autism is likely to have a unique pattern of behavior, these are some common autism symptoms:  

Social skills

  • Fails to respond to his or her name
  • Has poor eye contact
  • Appears not to hear you at times
  • Resists cuddling and holding
  • Appears unaware of others’ feelings
  • Seems to prefer playing alone — retreats into his or her “own world”

Language

  • Starts talking later than age 2, and has other developmental delays by 30 months
  • Loses previously acquired ability to say words or sentences
  • Doesn’t make eye contact when making requests
  • Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
  • Can’t start a conversation or keep one going
  • May repeat words or phrases verbatim, but doesn’t understand how to use them

Behavior

  • Performs repetitive movements, such as rocking, spinning or hand-flapping
  • Develops specific routines or rituals
  • Becomes disturbed at the slightest change in routines or rituals
  • Moves constantly
  • May be fascinated by parts of an object, such as the spinning wheels of a toy car
  • May be unusually sensitive to light, sound and touch and yet oblivious to pain

Of the symptoms listed above, Nick displayed none in the social skills category.  The physician noted that his slow speech development was probably due to having Down syndrome and Verbal Apraxia (a neurologically based condition that is characterized by difficulties planning and producing the complex set of oral movements necessary for intelligible speech. For more information on Apraxia click on my favorites section, a new book, Speaking of Apraxia- A Parent’s Guide to Apraxia of Speech by Leslie Lindsay has just been published.  Regarding behavior, Nick did exhibit a few of the symptoms but never was fascinated with spinning any objects or sensitive to light or pain.  So cut to the chase, after the screening the conclusion was he did not have autism.

Fast forward 6 years later, his speech hadn’t improved and the behaviors were growing more severe.  Nick’s speech was limited.  Imagine someone putting duct tape across your mouth and trying to navigate the world.  With no voice he would get frustrated and turn to throwing such things as a chair across the room or breaking a glass across the floor.  Worse yet, he would have meltdowns that drew blood and bruises when he would pinch, kick and bite. At Gi Gi’s Playhouse group time (a local Down syndrome support group,) I began to notice that he was playing more by himself and primarily with any musical toy he could get his hands on dancing side to side.

This was more than just Down syndrome.  Next stop Little Friends Center for Autism.  The second screening was much more comprehensive and included a team of therapists who individually assessed him.  Voila, diagnosis confirmed.  I can say first hand that the evaluation methods had improved tenfold.  I suspect that is one of the reasons why the incidences of autism cases have risen so significantly over the past five years.

So back to the Nick connection, because he has always been highly social it was hard to see that somewhere in the midst autism had crept in.  The tapping, rocking, hand flapping, humming and the sounds of musical toys had become white noise to us like the dryer running in the background. We had become immune to them all. To us he was the guy who won over the hearts of everyone he touched.  He was the fun guy who can click with everyone. When he was much younger he had a belly flash club.  He wouldn’t see his Aunt Laura or my friend Sally for months and yet when he would reunite he greeted them by lifting his shirt up and flashing his belly.

Nick getting ready to belly flash!

He likes to give a high five, rub elbows, noses and he loves to get raspberries. Oh and let me not forget the burps, fake sneezes and what we like to call “force farting” to get your attention. For that I am grateful, well maybe not the force farting (Al’s term given for when Nick pushes out one to get a rise out of us) 😉 but I am glad he is so engaging.  And I have to say those who know Nick can attest to the fact that he can replicate exact sneezes after you do yours. Even Aunt Ali’s tiny, high pitched achoo!

Elbows… with his teacher, Rob

Noses…

The fact that he can make those connections warms my heart as his mother.  That’s what is in my noggin this week, until next Monday….May you find those special ways to connect with those around you!

~Teresa