Posted in Autism, Down syndrome, Education and Special Needs, Fun Side of Nick

Blog #126~Nick and the Varsity Football Team

Blog #126~Nick and the Varsity Football Team

Recently Nick and his respite worker Jodi were taking a walk around the Waubonsie Lake trail. Suddenly, Nick took off running towards the high school.  Jodi scanned past the trail to figure out what Nick was going after.  His face lights up.  Oh no, it’s the “KEY TREE!”

key tree

The football players hang their car keys here.

Nick is 21 years old and has Down syndrome and autism. Long before the 34 fire alarms he has pulled since third grade, he discovered car remotes.  He sought them out feverishly.  He’d even fish them out of babysitter’s purses, run to the front door, and set off their car alarms.

Back to the key tree…… Nick is cheetah fast when it comes to setting off alarms.  Jodi had no intention of letting Nick disrupt football practice so she sacrificed her own remote to distract him.  Hey, I’ve said it before.  Its Nick’s world, the rest of us are just trying to keep up. 🙂

When football practice was over, Jodi took Nick over to say hi to the team. Her son, Tyler plays center for the Waubonsie Valley High School football team.  Nick is about half his size standing 5’2 and weighing barely 110 pounds soaking wet.

Nick with Tyler….

Nick and Tyler

On Thursday nights after practice, the players get treated to a pasta dinner. Nick helps set up and pour drinks for all the players.  He elbow bumped each player as they came through to get their food.

Nick loves his pasta!

Nick meatballs

He also assisted in cleaning up afterwards…..

Nick and Dan

After dinner Nick helped the coaches pass out the senior’s white jerseys. He kissed each jersey before he tossed them at the players.  They would laugh and elbow bump him as each passed through the line.

Nick has a way of livening things up. The Warrior football players are always excited to see him at practices and dinner.  They have named Nick their “Warrior Dude”.  As a mom, it makes me so happy to know that Nick is getting out in the world, meeting new friends and bringing smiles (and chuckles) along the way.  That’s what is in my noggin this week.  Go Warriors!

Nick and Football team

~Teresa 🙂

Posted in Autism, Down syndrome

Columbus Day

Columbus Day

Columbus Day

Nick is home today for Columbus Day holiday. I’ve decided enjoy the day with him instead of trying write.  Be sure and check our Facebook page, “Down Syndrome With A Slice Of Autism” for daily posts including informative articles, musings, fun pics and videos of Big Guy, Nick!

Have a great week!

Teresa and Nick 🙂

Posted in Uncategorized

October is Down syndrome Awareness Month

October is Down syndrome Awareness Month

Down syndrome awareness month

It’s hard to believe that September is winding down.  October starts this week and I want to kick it off by promoting Down syndrome Awareness Month.  How much do you know about Down syndrome?  Click on this week’s link to learn more about it, including facts and links promoting Down syndrome:

https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-month/

The page will then show nothing found (something is wonky here this week).  Then type in:  “Blog #26 Down syndrome Awareness Month in the search box.  It should pop up. Sorry about the extra step.

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

~Teresa 🙂

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Education and Special Needs, Tech Stuff/Apps and Video Based Instruction

Blog #125~Success Stories with the AAC Talker Device

Blog #125~Success Stories with the AAC Talker Device

Nick has been using his new talker for about 5 months now. People with severe speech or language problems often use an AAC (Augmentative and Alternative Communication) to supplement existing speech or replace speech that is not functional. In addition, picture symbols called PECS (Picture Exchange System) and sign language are used to help individuals express themselves.

Nick’s PECS Book…..

IMG01 (13)

During the spring, the staff at Nick’s school along with his private speech therapists met to look at what type of device would work best for him to communicate. Nick is 21 years old and has Down syndrome and autism. A series of 3 meetings were held to address the student’s abilities, gather data and consider options for appropriate inclusive technology products. This process is called the SETT Framework. SETT is an acronym for Student, Environment, Tasks and Tools. To read more about this process go to the archives and read Blog #113~Ready, SETT, Go and Blog #116~A New Talker for Nick.

Since the SETT meetings, Nick has been using an iPad with and iAdapter case. The program installed is called, Touch Chat. The initial update I gave on this device is in the archives posted on 5/18/15.   We had a few goals in mind. One was to be able to request items like food, movies, music, going out into the community. Secondly we wanted Nick to use the talker to gain attention appropriately. Finally, we hoped that Nick would be able to express his feelings (happy, angry, and frustrated).

Nick has been requesting food items very well along with items of interest to him like tennis balls, sprite, music, people he wants to see, tired etc.. on a consistent basis. In addition, he has been using it to gain attention. When he burps or farts he pushes the “excuse me” or “that’s gross”. If you try and find a certain button on his talker, he will hit “excuse me” as if to say, back off this device is mine. Last week he pushed the button with a keyboard on it. He wanted me to know he had played the keyboard at school that day.

Brian, his private speech therapists spends a lot of time working with Nick and his AAC device. The two go trolling around the speech clinic looking for ladies. Brian added a new button which Nick has been pushing, “You look pretty today, hubba-hubba!” That one has been a big hit 🙂

Nick’s talker, note the bumper pads the team installed.  Nick likes to send it airborne on occasion 🙂

IMG_5231

Last week, there was a major breakthrough with Nick using his talker. One trigger that often leads to a major meltdown for Nick is a crying baby or child. He will begin to pinch himself on his cheeks, followed by pinching anyone near him when this happens. This happened at an airport, leading to a severe meltdown the summer before last. While on a community trip at IHOP on Friday, a child began to cry at a table near them and Nick began to pinch himself. His teacher pointed to the talker instructing Nick to use it. Nick immediately took it and began to push the “stop” button. The first two times he hit the stop button the child stopped screaming. The look on Nick’s face was priceless. It might have been just a coincidence, but in that moment Nick realized using the talker really does work. His teacher cheered and praised him. He was so proud. It was as if he realized that he had power over the situation.

Yay Nick!!!

IMG_5116

It reminds me of many years ago, when the staff got trained to use PECS with Nick. His world of limited speech left him frustrated in those days during puberty. This resulted in many horrific meltdowns.  Using the PECS pictures gave him power; it gave him a voice (much like the talker is starting to do now). The key to the AAC device being successful will be getting everybody on board. Everyone that works with Nick needs to encourage him to use it (and praise him when he does). I look forward to sharing more of his successes with the talker and building on to this. I know he has much more to tell us all. That’s what is in my noggin this week.

~Teresa 🙂

 

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

Blog #124~Sports and Your Special Needs Child

Blog #124~Sports and Your Special Needs Child

Having a child with special needs and finding sports and leisure activities that suit their level isn’t always easy. My son Nick is 21 years old and has Down syndrome and autism. Nick has participated in Special Olympics, Top Soccer, and Challenger League Baseball programs.  Today I want to highlight the baseball program (The Challenger Division).

Special Olympics (http//www.specialolympics.org)

Nick stands on the top of the podium winning  the Illinois State Gold Medal in the softball throw….

Nick Special Olympics

Top Soccer (http//www.usyouthsoccer.org/programs/topsoccer)

Nick Top Soccer

Baseball-The Challenger Division http://www.littleleague.org/learn/about/divisions/challenger.htm

“The Challenger Division was established in 1989 as a separate division of Little League to enable boys and girls with physical and mental challenges, ages 4-18, or up to age 22 if still enrolled in high school, to enjoy the game of baseball along with the millions of other children who participate in this sport worldwide.  Today, more than 30,000 children participate in more than 900 Challenger Divisions worldwide.

Teams are set up according to abilities, rather than age, and can include as many as 15-20 players. Challenger games can be played as tee ball games, coach pitch, player pitch, or a combination of the three.

One of the benefits of having a Challenger Division is that it encourages the use of “buddies” for the Challenger players. The buddies assist the Challenger players on the field, but whenever possible, encourage the players to bat and make plays themselves. However, the buddy is always nearby to help when needed.”

Nick challenger league

Nick would hit off the tee and a volunteer buddy would help him around the bases. It was a great experience. Check out our Facebook page called “Down Syndrome With A Slice Of Autism” to view a wonderful video about The Challenge League. Or go to this link to see more @http://videos.littleleague.org/video/2015/09/09/What+the+Challenger+Game+means+to+Little-wzODBndzpy

I highly recommend looking into sports programs for your child with special needs. The Challenger League was a wonderful program to be involved in. Play ball, that’s what’s in my noggin.

~Teresa 🙂

 

Posted in Autism, Down syndrome, Fun Side of Nick

Happy Labor Day

Happy Labor Day

Happy Labor Day

I hope everyone is having a nice, relaxing Labor Day weekend.  I’m taking the day off and will press a new blog next week.  Until then, if you haven’t read “Stuff On My Cat, Part II”, kick your feet up and enjoy @https://nickspecialneeds.wordpress.com/2013/07/08/blog-62stuff-on-my-cat-part-ii/

~Teresa 🙂

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

Blog #123~UFC Rousey & Apraxia of Speech

Blog #123~UFC Rousey & Apraxia of Speech

Headline in ABC News last week, Ronda Rousey UFC champion fighter brings awareness to Apraxia of Speech! Take a look at the story featured on Good Morning America:

The lives of champion UFC fighter Ronda Rousey and speech pathologist and mom Laura Smith might seem worlds apart, but the two women share a unique connection.

Smith and her 5-year-old daughter, Ashlynn, met Rousey, 28, this spring at a book signing in Denver, Colorado, for Rousey’s autobiography, “My Fight/Your Fight.”

Smith told ABC News she was on a mission to meet Rousey in order to find out if the speech disorder she had as a child was the same condition that affected her daughter, Ashlynn, has.  

“I read probably everything she’s ever said about her speech impediment and the more I read I was like, ‘That was apraxia. This is apraxia,’” Smith recalled.

Childhood apraxia of speech is a motor speech disorder where the brain has problems coordinating with the body parts –- like lips, jaw and tongue -– needed for speech, according to the American Speech-Language Hearing Association.

“At first I was tested for deafness,” Rousey said of her own childhood struggle. “They thought maybe my pronunciation was off because I was hearing things differently.”  

“But it was really I had all these words perfectly arranged in my head, it’s just when they tried to come out of my mouth they sounded different,” she said. “It was kind of like there was a divide between my brain and my mouth.”  

Because apraxia was not a common diagnosis when Rousey was a child, no one suspected it was what was behind the fighter’s speech problems. That is, until Smith gave Rousey a brochure on apraxia at the book signing.  

“I threw the brochure and the bodyguards came in immediately to get it,” Smith said. “She [Rousey] picked it up and I was like, ‘If you did have it, would you say it in your interviews because it would mean so much for our kids.’”

Rousey says the information in the brochure struck her instantly.  

“I actually ended up reading through the whole thing that night and was like, ‘Oh my God, this is all exactly it. This is exactly what it was,’” Rousey said. “I didn’t know it was actually apraxia until that moment.”  

“She really taught me a lot about myself that day and I can’t thank her enough for it,” Rousey said of Smith.  

To thank Smith and her daughter, Rousey sent a special message, doing exactly what Smith asked her to do at the book signing, talking about apraxia.

“Hi Laura and Ashlynn,” Rousey said in the taped message. “I just wanted to say I’m so happy to hear everything that you’re doing to raise awareness of apraxia.”

“You definitely raised awareness in me and I just wish you all the best,” she said. “I know our paths will cross again someday at some point so I can’t wait to see you again.”

Ronda Rousey ABC news

So just what does apraxia look like?   The American Speech–Language–Hearing Association, describes childhood apraxia of speech (CAS) “is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The messages from the brain to the mouth are disrupted, and the person cannot move his or her lips or tongue to the right place to say sounds correctly, even though the muscles are not weak.”

This hits home for me. My son Nick who is 21 years old and has Down syndrome and autism was given the diagnosis of apraxia when he was 6 years old. While his language skills have improved with speech therapy, he still struggles with articulating words. When he tries to imitate some words he gets stuck.  Nick continues to go to speech therapy, uses sign language, a picture exchange communication system (PECS) and has an AAC device with an app called Touch Chat to further facilitate his communication.

For more information including symptoms, causes, testing and treatment click on the on these links:

http://www.webmd.com/brain/apraxia-symptoms-causes-tests-treatments?page=3

http://www.apraxia-kids.org/

http://www.speakingofapraxia.com/  The first ever parent guide to childhood apraxia of speech, written by Leslie Lindsay

SOA_mock (2)

The meeting of Smith and Rousey at the book signing resulted in raising awareness of apraxia. Rousey posted the brochure on her Facebook page, which has been liked by nearly 7 million as of last week.

ronda-rousey-book

Here’s to Rousey who has won many fights in her life both in and outside the ring.  She has no doubt given inspiration to kids and their parents around the world. I hope this information helps parents and children who are struggling with speech difficulties. That’s what’s in my noggin this week.

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #122~Parent Stress and Autism

Blog #122~ Parent Stress and Autism

Research has clearly shown that mothers of children with autism experience more stress, depression and poorer health than is typical of mothers in general. Autism Research Review (ARRI) reports this editorial, “Parental Stress in Autism Spectrum Disorders: In a survey of 219 parents of children with autism, Sharpley, et al. (1997), found that more than 80% reported sometimes being “stretched beyond their limits,” with mothers reporting higher stress levels than fathers.   The authors commented that the three most stressful factors are “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.”

I know of this stress too well. My son, Nick is 21 years old and has Down syndrome and autism. His impulsivity is at an all-time high. In the 5 minutes I stepped out to roll the garbage bins to the curb, he cleared out a desk drawer and threw the contents all over place. A few days before, he was up at 4am and proceeded to take two bottles of salad dressing and dump them all over the kitchen and laundry room floors.

At least he put the empty bottles in the recycle bin 🙂

dressing

According to an article written in Disability Scoop (www.disabilityscoop.com):

“Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.

Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.

Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.

autism war girl

Now, I would never compare my level of stress to that of a combat soldier. But I do have to remain on point to keep up with Nick. I must jump out of my skin dozens of times a day when he pushes the ADT keypad, microwave, garbage disposal, and phone intercom buttons, runs upstairs to run the faucets full blast, or empties a full basket of folded laundry and the basket off the second floor.  Mix in sleep deprivation and dodging potential meltdowns situations, topped with a constant barrage of stimming sounds all of which send tension levels skyrocketing.

autism and sleep cartoon

The stress of parenting a child with autism is high for many reasons. Parents cope with grief, worries about the future, struggling to find resources and support for their child on top of handling the behavior and communication issues associated with having autism.

A child with autism may display unpredictable and disruptive behaviors have meltdowns that can be of danger to themselves and others and have trouble sleeping through the night. Deficits in speech and communication can contribute to behavior problems as well. In addition, parents may be dealing with seizure disorders related to autism.

A child’s autism diagnosis affects every member of the family in different ways. Parents must now place their primary focus on helping their child with autism. This may put pressure on their marriage, other children, work, finances, and personal relationships and responsibilities. Much of the focus shifts to finding resources and spending money towards treatment and interventions for their child. These needs can complicate family relationships, especially with siblings.

So what coping mechanisms help a parent dealing with anxiety and drained of energy?

*Get involved with support groups locally and online

*Obtain respite care and apply for funding for supportive services.

*Get your child/young adult into programs and social groups specifically tailored to autism.

*Carve out time to enjoy leisure activities like exercise, massage, meditation and self-relaxation techniques.

These can go a long way towards improving mental health and reduce the strain caused daily. While I try and do most of things, there are some days that push me close to the edge. Ask any parent raising a child with autism and they will tell you that some days you just can’t combat the stress.  That’s what is in my noggin (and heart) this week.

~Teresa

 

Posted in Down syndrome, Fun Side of Nick

Vacation and Special Needs Child

Vacation and Special Needs Child

Last week, Nick put together this task strip.  I think he is ready to go on our annual vacation to the Outer Banks, NC (OBX)!

OBX Task Strip

We have been going to the Outer Banks for the past 5 years. Nick loves the water.  It’s not easy getting a child with special needs to swim independently.  Nick is now 21 and has Down syndrome and autism.  Here’s some information on how he learned how to swim and why we love the beach so much@https://nickspecialneeds.wordpress.com/2012/08/13/blog-17-lifes-a-beach/

I hope that you all find your happy place and get to relax this summer.  I know Nick is ready to go!  That’s what is in my noggin this week.

~Teresa 🙂

 

Posted in Autism, Down syndrome

Blog #120~Lessons Learned on a Zip Line

Blog #120~Lessons Learned on a Zip Line

Recently on a vacation to Punta Cana in the Dominican Republic, my siblings and I decided to book an excursion to go on a zip line.  It seemed like a good idea at the time. You know something to knock off the bucket list.  That is until the crew at Runners Adventures began to strap the equipment on me.  The instructor explained the zip line course, proper technique and hand signals to watch for.  There were 12 lines total, the first few were lower.  All I had to do was make it through the first set and I could bail out.  As we climbed the stairs to the first cable, the fear began paralyzing me.

The staff person clipped the metal hooks over the double cables and instructed me to sit back, tuck my knees in, and to rest my hand on the cable and keep it relaxed.  I let go of my clenched fist and glided to the other side (and without one single scream or swear word).  The second line was a fast one, 6 seconds to the other side (oh and be sure to smile because there was a photo op).  I came down that line like a bullet and finished feeling like a crazed, adrenaline junkie.

zip line

The stairs leading up to the rest of the lines got higher and the cables were longer and more risky.  My brother in law could see the look on my face, that of singular focus. He reminded me to take time to enjoy the scenery.  I kept my hand loose soaring with ease and taking in the beautiful views. By the way, I made it through all 12 lines. 🙂

Zip line view

Later at the beach, I glanced out at the brilliant, blue Caribbean ocean reflecting on the adventure……

beach

Sometimes, we need to push ourselves way out of the comfort zone.  Doing something so scary and unfamiliar forces you to face life’s uncertainties.  I have a lot of fears regarding my son, Nick.  He is 21 years old, and has Down syndrome and autism.  I worry about his future after he finishes the post-transition program next February.  I’m uncertain about him living in a group home someday.  Who is going to insure his safety? How will I know if he was possibly neglected or abused, since he has very limited speech?  Will he think that I have abandoned him? Will he be fulfilled and loved as much as he is here at home?

Nick enjoying the hot tub on our deck……

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I learned a few things on the zip line.  Even if you are uncertain, you have to trust that the staff has your back and just let go.  At some point, I need to loosen my grip and trust that others can take care of Nick in the future.  It’s okay to be uncertain; but those fears can hold you back, and you might miss a great ride.  In fact by relaxing my hand and letting go, I felt a spark ignite inside me. That’s what is in my noggin this week. 🙂

~Teresa