Posted in Autism, Down syndrome, Fun Side of Nick

Blog #75~ 5 Reasons I am Thankful for Nick

Blog #75~ 5 Reasons I am Thankful for Nick
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The road I have travelled with Nick was not in the plan.  It’s the thin, grey line on the map that is bumpy and full of twists and turns.  Nick has Down syndrome and autism.  The pace was bogged down as he struggled to hit developmental milestones. Other times it has been lightning fast, (like when you are racing to beat him to an exposed fire alarm). After 19 years and 30 fire alarm pulls, I am very thankful for Nick and here is why:

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1. I appreciate the small successes much more now. I don’t take anything for granted that a child has to learn like sitting, eating, crawling, walking, talking and especially toilet training. Each victory has been sweeter when Nick hit the marks.

2. I am more grounded because of Nick. He has taught our family to stay humble. While other moms were bragging about their child getting A’s in honors classes, being the star athlete and what colleges they were looking at, I smiled politely.  In my mind I was thinking, “At least Nick didn’t pee in his pants at school this week.”

3. I’ve become some what of an expert on Down syndrome and autism. Through trial and error along with wonderful teachers, therapists and mentors I have learned what works best for Nick. I am now able to pay it forward in my writing, speaking engagements and helping other parents out.

4. Life is never boring with Nick. He cracks me up with his mischievous ways.  He generates  laughter and tons of  “Likes” on my Facebook page: Down syndrome With A Slice Of Autism”.

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Here’s Nick’s signature elbow bump, (his version of a high five) with his Dad and Aunt Laura  🙂

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He’s got that look on his face like, I’m going to grab your wine)  🙂

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What a jokester, hardy har har Nick……

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5. Nick gives unconditional love so freely. Each morning he wakes up, lets out a fart and smiles. All through the day he showers me with kisses, elbow bumps and hugs.

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I am truly thankful to have travelled down this road with Nick.  It has been a blessing to be his mom.  That’s what is in my noggin this week. Have a wonderful Thanksgiving!
~Teresa

snoopy thanksgiving

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #74~ Teaching to 21

Blog #73~ Teaching to 21
Last week, I was a guest lecturer at Northern Illinois University. The graduate level class topic was “Functional Communication and Social Skills” as it relates to autism. I presented a parent’s perspective.

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One of the greatest gifts we can give our kids is teaching personal independence. It’s never too early to start working on these skills. One concept brought to my attention by Nick’s support teacher from elementary school is called, “Teaching to 21.” What skills will an individual with special needs require to lead a successful life after school is finished? Here is a list of skills that should be addressed both in school and at home for students with special needs:

 Assessment of Functional Living Skills (AFLS)

Source: http://autismbeacon.com/topics/article/functional_skills_for_people_on_the_autism_spectrum

“Functional skills” are those skills that if learners cannot do for themselves, someone will have to do for them. Functional skills are immediately useful and important. They increase self-help and independence and are present in every setting and throughout every stage of life:

Basic skills:
Self-management
Basic Communication
Dressing
Toileting
Grooming
Bathing
Health, safety, first aid
Night time routines

Home Skills Module:
Meals at home
Dishes
Clothing
Laundry
Housekeeping
Chores
Household mechanics
Leisure
Kitchen
Cooking

Community Participation:
Basic mobility
Community knowledge
Shopping
Meals in public
Money handling
Phone
Time
Social awareness
Manners

School Skills:
School waiting and transitions
Classroom routines
Meals at school
Classroom people, places and objects
Classroom mechanics
Outside school
Functional academics
Classroom leisure and independence

The IEP team should address these skills in goal planning and daily schedules of the student. In addition, supports should be put in place that will assist the student in reaching these goals. Here are some of the supports that Nick has used in school. Since Nick has a dual diagnosis of Down syndrome and autism, these tangible provisions give him clarity and focus in doing his tasks.

*Visual supports such as task strips, social stories, picture schedules and video modeling:
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*First-then visual or app to remind student what they are working for:
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*Timed Timer clock or app and Picture Scheduler app:

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*Physical prompting-teacher may do hand over hand to teach a school and fade back to just pointing to direct student.

*Guiding student with visual cues (putting stickers on washcloths to teach folding sequence, sprinkle hole punch paper dots on floor to teach vacuuming, using counting templates, etc…)

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For students with autism, if they can see it…. they can understand it. In Blog #5~Ready, Set, Action (located in April 2012 Archives) I wrote about how successful video modeling was in teaching Nick skills around the house. He responds to and is motivated by seeing the footage in a video format. It also landed him a community job at a local elder residence care facility.

Nick hard at work 🙂
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Nick takes great pride in his jobs both in the community, school and at home. We continue to work on the skills needed for him to be as independent in all areas of his life so he is ready to manage things when he is finished with school. It’s all about starting early and teaching to 21! That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

Posted in Autism, Fun Side of Nick

Update~ Under Construction Part II

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Update~ Under Construction Part II

We survived “Carpet-Palooza” last week.  It was a long day and I felt like a giant Swiffer dust rag when it all wrapped up shortly after 7pm.  Last June, in Blog #59~The Sleuth Detective, I wrote about things that just disappeared into a black hole around the house.  I do have some good news of some recovered items!

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Two Nick’s iPods were recovered from the deep recesses 🙂 Oh and a bunch of toys that our cat, Miss Mellie had batted around and got trapped behind the settee in the dining room.

Now you see why I felt like a giant Swiffer cloth 🙂

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Nick got home from school and saw the mayhem, his first reaction was to say, “Wow!”

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The foreman of the Lowes carpet crew took one look at Nick and said, “I remember, doing this house now.” (He had done the basement after the reconstruction from the flooding in April.) I wasn’t surprised, Nick can leave a lasting impression.

Nick squeezed his way into the kitchen and was delighted to see all the treasures that had been buried…….

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As I continued to clean up the silk plants that pretty much serve the function of being dust catchers, I caught Nick out of the corner of my eye.  He was throwing the cat toys at the carpet crew.  As my friend, Kendra put it, “Nothing says welcome to my crib like getting hit upside the head with a cat toy.”  As I mentioned, Nick can leave a lasting impression. Down syndrome and autism can be so much fun! 🙂  The Lowes carpet crew had a good laugh and appreciated his lively spirit.

The day rolled out nicely and the carpet looks wonderful!  Here’s Nick’s crib, it looks brand new……

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I am slowly peeling away through the boxes that I had to shove into the guest bathroom and out in the garage.  They are filled with the breakables, knick knacks and all the stuff that was on the closet floors. I’m taking it one box at a time and will be making my third trip to AMVETS with donations.  The silver lining; getting new carpeting does make you organize and clean out unwanted items.  Speaking of AMVETS, here’s to our brave veterans today!

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That’s what is in my noggin this week.  Stay tuned for next week’s topic about communication and social skills as it relates to autism! 🙂

~Teresa

Posted in Autism

Update~ Under Construction

Update~ Under Construction

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It all started with the heavy rains earlier this spring which lead to flooding in the basement.

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The basement is put back together and looking pristine with fresh paint and carpeting.  But guess what?  Now I want the rest of the house done.  Twelve years and two boys can really beat up a house. Nick’s autism and raging meltdowns have put a lot of dents in the walls.  Both of their rooms have seen better days.

The ugly side of autism….Nick use to hurl all kinds of stuff at his bedroom wall.  Here it is all patched up…….

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Next stop, fresh paint in the boys rooms followed by the new carpet installation in the rest of the house.  I think I just opened up a huge *can of worms!  🙂

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I have three days to get all of the knick knacks and breakables packed up and clean out the bottom of all the closets in preparation for the carpet installation. Oh, and there is the sitting room…..one corner stacked with clutter, ughhhh. This area could be featured on the show “Hoarders”.

In the words of Scarlett O’Hara, “I’ll think about that tomorrow.

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My sister in law, Ali saved the day bringing me boxes, wrap and wine!  Thanks dear Ali for all of this and helping me haul the heavy boxes of china, stemware and crystal that I packed up over the weekend out to the garage.  Home renovation is one sure fire way to get rid of clutter and organize.  🙂

Stay tuned for more about Nick’s world after this construction site gets completed!  That’s what is in my noggin today. 🙂

~Teresa

*Open up a can of worms idiom~

According to Wiki.answers and Wise geek: “To open a can of worms” usually means to bring a new set of distracting complications and difficulties to a discussion or a problem. As a “can of worms” is a wriggly mass of confusion, a topic may have many detailed and involved aspects, whether you realize them or not.

Metaphorically speaking, to open a can of worms means to inadvertently create numerous new problems while trying to solve one. Experts disagree on the origin of the phrase, but it is generally believed to be a Canadian or American metaphor coined sometime in the 1950s. Bait stores routinely sold cans of worms and other popular live baits to fishermen, who often discovered how easy it was to open them and how difficult it was to close them. Once the worms discovered an opportunity to escape, it became nearly impossible to keep them contained.

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #70~When Down Syndrome and Autism Intersect

Blog #70~When Down Syndrome and Autism Intersect

 
I just finished reading the Woodbine House book, When Down Syndrome and Autism Intersect, A Guide to DS-ASD for Parents and Professionals. As always, Woodbine House delivers the goods. I only wish this book had been available fifteen years ago when I began to suspect that Nick had something more going on than just Down syndrome.

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I started to notice little things at first. Around the age of five Nick started to bang objects and exhibit other odd behaviors. After doing some internet research I stumbled upon a sensory processing disorder checklist. Nick met many of the criteria which led me to believe this was the reason for those behaviors. When we attended the local Down syndrome support group functions I also felt that he didn’t speak as well as his peers.

Nick is more interested in his hand flapping than Santa 🙂
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So, I went to have an evaluation done to see if he might have autism. The results of this indicated that Nick did not have autism as he was highly social and his language deficits were a result of having verbal apraxia of speech. For more information on verbal apraxia of speech I would suggest reading this Woodbine House book, Speaking of Apraxia A Parent’s Guide to Childhood Apraxia of Speech:

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Six years passed and as puberty was full on, Nick’s behavior and meltdowns became more violent and dangerous. The staff at his school struggled along as well. It was nagging at me. I brought up my concerns and the need for an evaluation for autism. The staff informed me that this was not necessary as there was already a primary evaluation of Down syndrome. We decided to have an independent evaluation done at Little Friends Center for Autism, http://www.littlefriendsinc.org. Getting the official diagnosis of autism confirmed my suspicions and gave me a sense of relief and validation. Most importantly, the formal diagnosis allowed for getting the services of the school district’s autism specialist. This specialist helped to identify what triggers set off meltdowns and was able to put a behavior plan in place along with a better picture communication system with proper training for the staff and myself.

Nick age 12, proudly stands on the podium winning the state gold medal in the softball throw at the Special Olympics…

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According to the Kennedy Krieger Institute, http:// www.kennedykrieger.org,  around 10-15 percent of children with Down syndrome also have autism.

For an autism diagnosis there are three areas of development that a person must show significant difficulties:

1. Social Functioning
2. Non-verbal or difficulties with communication
3. Restricted interests and activities

Some of the symptoms and behavior shown with children having Down syndrome and autism are:

 
*Significant lack of social response
*Difficulties with communication and reported loss of verbal and expressive language.
*Repetitive behaviors like hand flapping, spinning or rocking, fixation on inanimate objects (strings, fans, mirrors, water, etc..)
*Sensory issues including the intensified sensitivity or need for more sensory input
*Behavioral challenges including frequent tantrums and physical violence

 
The book, When Down Syndrome and Autism Intersect contains a great deal of information on health issues and gives practical information on tackling the complex world of raising a child with Down syndrome and autism. My best advice is this, if you suspect that a child with Down syndrome has something else going on then run; don’t walk to get a firm diagnosis. There are more services that become available to help with challenging behaviors, communication and learning for our kids. That’s what is in my noggin this week! 🙂
~Teresa

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Speech and Occupational Therapy

Blog #69~Down Syndrome, Autism and Speech

Blog #69~Down Syndrome, Autism and Speech

I am often asked about Nick’s ability to produce words given the fact that he has Down syndrome and autism.  He does have a vocabulary including a few expletives that he picked up from us somewhere along the way. I find it interesting how he can say those words pitch perfectly.  This week I have a very special guest blogger.  Brian Sabella is Nick’s speech therapist and shares his perspective on working with Nick at Suburban Pediatric Therapies:  

Speech-Language Therapy and Nick

By Brian Sabella, CCC-SLP

I have been providing clinic-based speech-language therapy for Nick for over four years now. I feel fortunate for the experience for a couple reasons. First and foremost, he absolutely cracks me up—every week. There’s something about his brand of adolescent, slapstick humor that just resonates with me as a fellow male. Additionally, Nick’s family and support system are a pleasure to work with. They hold very high expectations of his communication abilities and understand communication takes other forms besides the spoken word. Nick uses a multifaceted system that includes spoken words, printed pictures, and electronic devices to communicate throughout his day. And as a speech therapist, I love it. For Nick, progress in “speech” means being able to communicate more effectively; it isn’t just about talking!

For those curious about the speech Nick does work on, here is a sample of some words we have practiced and continue to practice: help, Sprite, plate, shower, taco, pasta. With many of these words, Nick is not expected to articulate them exactly as you or I would, but rather, to produce them in a way that a listener would be more likely to understand. The idea is that Nick will probably be handing his conversational partner a picture of a taco anyway, so the spoken word is meant to enhance the communicative exchange. With this specific word, Nick will often produce aco, omitting the t. During our drill practice, I will call attention to my mouth and ask Nick to say it like I do, annunciating that missing t  sound and providing a visual cue (such as pointing near the area of my mouth where the sound is produced). After a correct production is established, Nick is encouraged to say it again a total of five times. Performing a high number of repetitions is always the best way to learn a new movement pattern, whether that movement is a golf swing, a pencil stroke, or a spoken word. Admittedly, speech drill is not one of Nick’s favorite things to do, so his good efforts are always rewarded with a bit of praise or even a small morsel of food.  You know, just to stay on his good side.

Most of my time spent with Nick in therapy hasn’t actually been focused on improving his speech. Some of it has. But I’m actually more concerned with improving Nick’s ability to communicate through other means. The reason for this is because, like many other individuals on the autism spectrum, Nick shows a strong preference for pictures.  He also presents with apraxia of speech, which further complicates matters. This is why at home and at school, Nick’s uses a picture exchange system that helps him communicate during everyday activities.

Teresa carries around with her a set of pictures of Nick’s favorite fast food restaurants.  When they are out running errands and it’s time for lunch, she shows Nick the pictures and he points to the logo of the restaurant he’s in the mood for. If he requests Taco Bell (which he usually does) he can then flip to a page that shows pictures of their menu items and he can indicate which ones he wants to order. Much of our time in speech therapy has been spent working on expanding his comprehension and use of these pictures.

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Then there’s the Bored Board. As readers of this blog, you know that when Nick is bored, he finds ways of wreaking havoc in extremely creative ways. Picking up on these signs of boredom before Nick decides to dump fajita seasoning on the cat or spill an entire bottle of cooking oil on the floor will allow his parents to redirect these behaviors to something less destructive. The Board Bored shows Nick pictures of more appropriate objects and activities to request: DVDs, computer games, an iPod, a whoopee cushion, Flarp noise putty, a (fake) bloody Halloween hand, a sound effects toy that makes burping and glass-breaking sounds, etc.  Nick and I have spent hours working on requesting with the Bored Board so that he can more effectively use it in a time of need.

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Recently, our sessions have been focusing on having Nick formulate requests using “I want.”  We set up a board using an alternative-augmentative communication (AAC) iPad app called Proloquo2Go. It transforms the iPad, iPhone, or iPod Touch into a high-tech voice output device that helps a person communicate by typing or touching pictures. Nick’s screen displays a variety of preferred snacks and some phrases, including “I want.” Our goal was to have Nick indicate which snack he wanted by pressing “I want” then the snack item.  When he does this, the device speaks the sentence “I want popcorn;” I then reward him with some popcorn.  If Nick only touches the snack item without “I want” first, then I prompt him to press both.

Proloquo2Go

As you might imagine, producing these sentences was initially difficult for Nick.  But over time, he became very good at producing them.  This graph tracks his progress and shows that Nick went from almost always needing support to produce these “I want” requests to, after five sessions, almost always producing them independently.

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As you can see, speech therapy is not always about speech.  For Nick, speech therapy is about helping him communicate effectively, even if it means doing so with pictures or electronic devices. With an alternative system of communication in place, Nick’s life is a little easier.  And his pets are a little safer, too.

Brian Sabella and Nick working at Suburban Pediatric Therapies 🙂 ……

Brian and Nick

Special thanks to Brian Sabella, CCC-SLP for sharing his insights this week.  For more about Suburban Pediatric Therapies check out their website at http://www.sptherapies.com.  As you can see there is much more to communication then just speaking words.  That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

Posted in Autism, Behavior/ ABA, Fun Side of Nick

Blog #68~Hardy Har Har 2

Blog #68~ Hardy Har Har 2

Sometimes I think Nick would rather tease than eat.  Well, unless it’s a big bowl of pasta, then all bets are off.  Having a dual diagnosis of Down syndrome and autism has made it difficult for him to verbalize speech.  It hasn’t stopped him from showing his funny side.  In Blog #39~Hardy Har Har, I explored Nick’s his sense of humor. Check this blog out @https://nickspecialneeds.wordpress.com/2013/01/28/blog-39hardy-har-har-nick/  This week I have some new gems to share.

Silly guy wearing the blue blanket on his head 🙂

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He knows he is going to get a laugh out of me here….

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Plunk, this is funny stuff….

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Ha, good one Nick. Way to drop the lime in the pasta water….

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Uh oh, another dribble from the second floor stairwell…In Blog #3~Getting Your Goat, you can see a lot more of these. Check it out @https://nickspecialneeds.wordpress.com/2012/04/17/blog-3-getting-your-goat/

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I try to stay one step ahead of him but it’s not easy.  His latest trick is to push the spout on the coffee maker and let it the hot, brown stream run over the counter and trickle down the white cabinet drawers leaving a puddle on the floor.  He also has taken to dropping toys, remotes, phones and an assortment of things behind the flat screen TV.  One thing that is helping is to catch him before he commits the act.  I show him this icon quickly before he initiates the problem behavior.  It seems to be helping him to regulate those impulses.

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In addition, I use the happy face icon to catch him being good as often as I can…..

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Like when he is unloading the dishwasher (and wearing my high heels)  hardy, har har Nick…..

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Finding ways for Nick to get attention appropriately also helps keep his behavior in check.  I am always stocking up on fun things for him….

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My friend, Kelli found this cool light up ring.  Nick took a fancy to it….

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I looked over a few minutes later and saw that he had made it a toe ring…. 🙂

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And who doesn’t crack up over a bloody hand….

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Hope you enjoyed the light hearted fare this week.  I feel very blessed that Nick is so happy. Yes, his antics drive us bonkers and wear on our nerves.  But he brings a great light and humor to each day. Hey, its Nick’s world….the rest of us are just trying to keep up.  That’s what is in my noggin this week! 🙂

~Teresa

Posted in Autism, Down syndrome, Feeding, Personal Hygiene, Toileting

Blog #67~Dear Abby, Down syndrome and Autism Style

Blog #67~ Dear Abby, Down syndrome and Autism Style…

Dear Abby

Advice Columnist, Dear Abby 🙂

It’s comforting to know that as a parent of a child who has Down syndrome and autism I can click the mouse and find support online. When Nick was born 19 years ago, a nurse handed me a couple of brochures on Down syndrome.  That was it!   This is the vision sustained me after hearing of Nick’s diagnosis of Down syndrome. Thank you, Chris Burke…..Actor, advocate, icon, my rock star!

Chris Burke

Ten years later we would meet Chris in person at the National Down Syndrome Congress convention.  (For more information: http:// www. ndsccenter.org)

My older son, Hank with Chris Burke at the NDSC  Convention……

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There are several groups that I belong to on Facebook. (Just type in “Down syndrome and autism” in the search engine.) These parents are going through many adversities trying to get through the day and night with their kids.  Most are sleep deprived because their children are up all night turning on lights stimming, banging things against the wall, and opening and slamming doors.  I dedicate this week’s blog to these brave warriors who get up weary, reaching for the Visine and Advil to take on another day.

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Down syndrome and autism support groups are a safe haven to share war stories, tips, get advice, commiserate and laugh.  No one flinches when a parent writes about a walk on the local nature trail, and stopping to go back to their dawdling child.  The 11 year old stood there having just pooped in the middle of the path. What can I say but, it happens.   Topics last week were varied.  One mom needed help on how to explain and guide her daughter about getting her period.  I added a comment about a great book that tackles puberty and body privacy issues called:  “Taking Care of Myself,” by Mary Wrobel.  There were dozens of helpful tips from other parents who had daughters that had dealt with this issue.  Another parent had just given birth to a baby who has Down syndrome.  I was moved by all the support given to this new mom. Here are just a few of the many offered to her:

  • “Go home and bond and love your baby”
  • “Congratulations you have been blessed.”
  • “Get regular checkups and a heart echogram to rule out heart defects.”
  • “Low muscle tone may make it difficult to nurse your child but don’t give up.”
  • “Focus on the baby, not the Down syndrome.”
  • “Go to www.noahsdad.com it has great information presented positively.”
  • “Check out www.futureofdowns.com it has a lot of good information.”

It’s good to know that the struggles of feeding, toileting, hygiene, sleeping, sensory, gross and fine motor issues are felt by so many parents.   For a long time I was alone.  I pulled away from the Down syndrome support groups because I didn’t fit in.  Nick didn’t progress like the kids who just had Down syndrome.  After Nick’s diagnosis of autism I reached out to the Chicago based group, National Down Syndrome Association: http://www.nads.org.  Within NADS, there is a group is called “More than just Down syndrome.”  I found a new home here.  We have a unique bond because these parents get it!

We’ve have been through it all with Nick.  Our days are far from perfect. He still wakes up some nights but at least he isn’t banging the walls or turning on all the lights.  But some things have become easier as he has matured into an adult.  Just yesterday we gave him the best, most cooperative haircut ever!  Miracles do happen. 🙂

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As I wrote about in Blog #66, reaching out to a support group has helped me realize that I am not alone on this path. I’m not the only one who has bent down and had to clean up my child’s poop.  Bless these warrior parents for getting up and fighting the good fight!  That’s what is in my noggin this week!

~Teresa

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