Posted in Autism, Down syndrome

Christmas Break

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Thank you for reading and sharing Nick’s world this year.  Have a Merry Christmas and we wish you a Happy New Year!   Enjoy your holiday with  family and friends. 

I am taking a two week break from the blog, but there’s plenty of good stuff in the archives to dig thru and enjoy in the meantime.  You can also check out the Facebook page for more photos, links and video clips of big guy. We look forward to sharing more fire alarm updates, stories, and information about Nick, Down syndrome and autism. 

Cheers,

~Teresa

Posted in Uncategorized

Re-Blog~ #78 Christmas Past

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Re-Blog~ #78 Christmas Past

With the busy holiday season upon us, I opted to re-blog “Christmas Past”.  Here is a little photo album of Christmas past with my boys @https://nickspecialneeds.wordpress.com/2013/12/16/blog-78christmas-cheer/

Wishing you all the best and take time to make memories with your family. They do grow up fast.  That’s what is in my noggin this week.

~Teresa

 

Posted in Autism, Down syndrome

Blog #111~ Constant Child

 

Blog #111~ Constant Child

Last Saturday morning, Nick watched the same DVD over and over.  It was a continuous loop of Thomas the Tank Engine’s, “A Big Day for Thomas”.

Thomas the Train

Twenty years later I didn’t see myself listening to the dialog, and able to recite every line.  At this rate, there will be no break between Nick watching Thomas and my grandchildren following suit.  I can see it now, Hank Jr. saying, Hey Uncle Nick want to watch Thomas the Tank Engine with me?”  I also didn’t imagine stumbling over plush toys that my son dropped from the second floor.

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I didn’t picture myself scrubbing red marker stains off his clothes at age twenty.

Note to school staff:  Markers + Nick = Skin, and Clothes…….

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This got me thinking, having Nick is like caring for a constant child.  Nick is twenty years old and he has Down syndrome and autism.  He can’t stay at home by himself and requires continuous supervision.  Don’t get me wrong, he has made strides doing much more independently (like unloading the dishwasher, putting away groceries, recycling, vacuuming, etc.).  And he does watch age-appropriate movies and listens to grown-up music on his iPod.

Nick tabor hills

But at the end of the day, I’m still wiping snot off the flat screen TV and microwave.  Out in public, he can never be more than arm’s length for fear he may take off running, or to pull a fire alarm.

30 Fire Alarm pulls since 3rd grade. Is there a bumper sticker for that?

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I’m not writing this to get sympathy.  I’m simply putting a lens on what the world looks like having a young adult with Down syndrome and autism.  It’s not the end of the world.  But it is a very different world, then I expected.  The stimming, banging, tapping, yelling, dumping, phone intercom and microwave button pushing is constant and mind-numbing at times.  And you never know what he’s going to drop off the top of the staircase.  All I can do is continue working with him to foster independence.  I’ll keep redirecting his inappropriate attention seeking behaviors and have him clean up his messes.

I’ll take Stuart Little and Dora the Explorer over shaving cream any day……

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I will remind myself that the laughter, silliness, sweet kisses and unconditional love of this constant child helps to offset the rest.

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That’s what is in my noggin this week.  Now back to operation red marker removal. 🙂

~Teresa

 

Posted in Autism, Down syndrome

Blog #110~Autism Holiday Survival Tips

Blog #110~Autism Holiday Survival Tips

The Christmas holidays can be a land mine for individuals who have autism.  The changes in schedules, crowds, noises and the lights can result in way too much external stimuli to process. My son, Nick is 20 years old and has Down syndrome and autism.  As I flip the calendar to December, I can feel my anxiety level begin to arise. We all handle holiday stress in different ways. The movie, Christmas Vacation conveys this so well.

“I don’t know what to say.  It’s Christmas and we’re all in misery”

Christmas vacation cig pic

Here are 10 tips for surviving the holidays with your child who has autism:

  1. Start early, get as much done ahead of time with holiday preparations.
  2. Don’t rush, allow enough time to get from point A to point B. Give more notice when it is time to transition. This will help to avoid meltdowns.
  3. Be flexible and relax your expectations over the holidays.
  4. Pare down where you can, whether it’s decorations, presents, or parties. It’s okay to say no or bow out early.
  5. When possible try to stick to routines. Sometimes it’s easier to hire a babysitter or respite worker to stay at home with your child while you go to holiday parties.
  6. Make social stories using visuals or written words (depending on your child’s level of comprehension). This will act as a script for your child to follow.  If they can see what’s expected, they will understand the plan and won’t be as anxious.

Task strip for a trip to the mall…..

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Task strip for airline travel……

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7. Provide pictures of family members and friends that you don’t see that often prior to visiting them. If your child doesn’t like to hug then try a special handshake, high five or Nick’s favorite….

Elbow Bump 🙂

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8. Give your child opportunities to help out. Allow them to make choices between two things. This gives them more control during the holidays, (when we all feel a bit out of control at times).

Nick helps out with the luggage, which gives him heavy sensory work….

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9. Find a quiet place for your child to unwind. Most of us know how to do this on our own (bubble bath, crack open a bottle of wine, exercise, etc.). But a child with autism can get overstimulated and not know how to decompress. They may need you to help them to settle down and relax.

10. Get rest when you can and take time to pause and reflect on the blessings of the season.

Christmas vacation reflection

I hope these survival tips will help your family and child with autism.  As you flip over the calendar to December today, take a deep breath.  Your child will be feeding off your cues, so……

Keep Calm Christmas

That’s what is in my noggin this week.

~Teresa 🙂

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Nick and his brother Hank in 1999

Posted in Autism, Down syndrome, Fun Side of Nick

Re-Blog~ 5 Reasons I am Thankful for Nick

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This week, a re-blog of #75 that I wrote last November:  5 Reasons I Am Thankful For Nick (who is 20 years old and has Down syndrome and autism). Click right here @https://nickspecialneeds.wordpress.com/2013/11/25/blog-755-reaso…nkful-for-nick/

Thank you for reading and sharing Nick’s world.  Wishing you all a blessed Thanksgiving. 🙂

~Teresa

Posted in Autism, Down syndrome

Blog #108~ Seinfeld Thinks He Has Autism

Blog #108~ Seinfeld Thinks He Has Autism

So Jerry Seinfeld thinks he might be on the autism spectrum. This story aired last week:

In his sit-down with Brian Williams, Seinfeld said, “I think in a very drawn-out scale, I think I’m on the spectrum.” The comedian added, “You’re never paying attention to the right things. Basic social engagement is really a struggle. I’m very literal. When people talk to me and they use expressions, sometimes I don’t know what they’re saying,” Seinfeld said. “I don’t see it as dysfunctional, I just think of it as an alternate mindset.”

Jerry Seinfeld

Since this interview aired there has been an outpouring of criticism from the autism community.  Many parents who are in the trenches battling autism are up in arms, and with good reason.  They are dealing with their child having debilitating seizures, sleep deprivation, health issues and violent meltdowns. They face the reality that their child will never talk, drive, date, get a job, live on their own or get married. It diminishes what families go through and they find it insulting to their children’s diagnosis.  Countless families are fighting to get services and funding for to take care of their child.  Amongst all this, they are cleaning up poop smear accidents.

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Here is a statement from Wendy Fournier, President of the National Autism Association:

What frightens me with these kinds of statements and stories is that I don’t want people to think that autism isn’t a serious diagnosis, or that it’s not a struggle for individuals and their families. What many people don’t understand is that on that lower-functioning end of the spectrum, we have individuals who are suffering and whose lives are at risk.” “Autism is not a designer diagnosis,” Fournier added.

Let me throw in my two cents here. My son, Nick is 20 years old and has a dual diagnosis of Down syndrome and autism.  His speech is very limited; he will never drive a car, date or get married and live on his own.  He requires supervision 24/7.  Oh and yes, I’ve cleaned up my fair share of $h*t storm accidents.

The only thing that Nick and Jerry Seinfeld have in common is that they are both incredibly funny guys.

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I am a huge Seinfeld fan, and I’m not going to boycott his shows because he made these comments without a formal diagnosis. He has the right to how he feels and share his journey of self-discovery.  But, I disagree with Seinfeld saying, “I don’t see it as dysfunctional, I just think of it as an alternate mindset.” He is suggesting that it’s just a different way of thinking, rather than a disorder.  Well, autism is a disorder!

I fear that society and government policymakers will disregard the seriousness of autism spectrum disorder (ASD).  The media is so quick to shine a light on the positive stories of autism, especially when a celebrity is involved.  That’s great, I’m all for any media attention to raise awareness. I hope Jerry continues to use his celebrity status to help advocate for more funding and services towards autism.  But society needs to see the other side of the spectrum and what families deal with on the front lines of the combat zone.  Maybe next week, I’ll write about one of those bloody battles I’ve had with Nick.  That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome, Fun Side of Nick, Recreation/Leisure and Special Needs

Blog #107~Dolphins and My Son with Special Needs

 

Blog #107~Dolphins and My Son with Special Needs

There is something about dolphins and Nick. The first time I noticed his fascination was on a field trip to the Shedd Aquarium when he was 6 years old. As the dolphins sprung out of the water he got so excited! The look on his face was sheer delight. I’d never seen him so joyful and mesmerized all at once.

Dolphin show

A few years later, at SeaWorld in San Antonio, my sister witness Nick’s joy.  Laura literally cried seeing Nick’s face light up.  He is so drawn to the dolphins and beluga whales.  Nick has Down syndrome and autism.  His speech is limited.  But no words were needed.  The look on his face said it all.  I knew that I had to find a way for him to get up close with dolphins as they seemed to be able to connect to Nick.

A few years ago we took a vacation down in the Florida Keys.  This was a perfect opportunity to find a program where Nick could get in the water with the dolphins.  There are many dolphin encounters in that area but I decided on a more personal experience at Hawk’s Cay Resort“The Dolphin Connection” provided this with small groups of 4 or 5 participants. I spoke with the head trainer to discuss our son and his special needs. She assured me they were very experienced with handling such. I created a social story filled with icons to support Nick in understanding the schedule of events. It was a beautiful day with the warm sun cascading over the aqua waters of the Keys.

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The first part consisted of a brief classroom instruction to go over rules and education on dolphins. Nick along with his Dad, brother and cousins were so excited to squeeze into wet suits and get down to the docks.  The experience was very hands-on where each participant individually got to touch, feed, hug and even kiss these amazing mammals.  Nick was completely engrossed. As the trainer had the dolphin roll over Nick quickly bent down to give the dolphin a “raspberry” on its belly.  The trainer remarked, “Well, THAT’S a first”.  Leave it to Nick,  I have a feeling that trainer will never forget him!

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The final portion of the dolphin encounter included interaction using hand signals. This was a huge splash as they were able to gesture and the dolphin would clap, twirl around, move backwards, and jump high in the air.  As I stood behind the camera filming, I was deeply moved.  This day was such a beautiful gift and the photo tells the story that Nick indeed was connected and absorbed in this moment.

Nick and his Dad……

Nick Kiss

Nick still likes to watch the video footage from that day. Two of his favorite movies are Flipper and A Dolphin Tale. I have to think that this unique experience will forever be one of the best things we have done for our son and together as a family.

Nick’s brother, Hank and  his cousin Anna….

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When you have a child with special needs and limited speech it can be extremely challenging to know what they are thinking, feeling and what they truly love.  I had a hunch that this experience would be a slam dunk.  Indeed, it was and then some.  My heart is warm in knowing that we could give this to him.   That’s what is in my noggin this week. 🙂

~Teresa

 

Posted in Autism, Down syndrome, Fun Side of Nick

Re-Blog~ Halloween Costumes and a Special Needs Child

Re-Blog~Halloween Costumes and a Special Needs Child

This is a fun look back at some of the Halloween costumes the boys have worn over the years.  Last Friday, Nick (who has Down syndrome and Autism) went gangsta to the school Halloween dance.  Shockingly, he kept the hat and necklace on much longer than I anticipated.

Snoop Nick is in da house……

Nick gangsta

Click on the link below to view more costumes the boys have worn:

@https://nickspecialneeds.wordpress.com/2012/10/29/blog-28-hallow…over-the-years/

I’ve been doing more re-blogs because we’ve picked up a bunch of new readers since launching the Facebook Page, “Down syndrome with a Slice of Autism.”  Plus it’s fun to go back and revisit some of these stories after two years.  That’s what is in my noggin this week.

Happy Halloween!

~Teresa

 happy halloween

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #106~ Pets and Children with Special Needs

Blog #106~ Pets and Children with Special Needs

Having a pet in the home can be beneficial for a child with special needs. Pets can boost mental and physical health, alleviate stress, be soothing and reduce anxiety. For a child with special needs, a pet provides unconditional love and affection along with helping a child become more social. In addition, having a pet in the home can teach responsibility and empathy. Feeding and caring for a pet allows a child to shift the focus to a pet’s needs. 

I witnessed this first hand with Nick. My 20 year old son has Down syndrome and autism.  His speech is limited. He uses a  picture book to communicate his wants, needs and feelings. On several occasions he has handed me these two icons:

This is our cat Miss Mellie of 17 years that passed away…..

Mellie Sad Icons

For as long as I can remember, there has been a tabby cat in my life.

Me with Tiger back in the late 70’s……

Tiger and T

When Nick was first born, we took him to get screened for the early intervention program. One of the questions they asked was, “What other family members were there?” They were pleased to hear this included an older brother and a cat. Both of them would help Nick become alert and engaged in the world. His brother could shake toys to get him to look up. A cat with a bell on his collar would also get Nick’s attention. Each time he would look up it would strengthen his neck and trunk. This in turn, helped to fight the low muscle tone associated with having Down syndrome.

Nick, Hank and Woody our cat….. (You can see Nick’s low muscle tone as he is propped up against his brother)

Woody and the boys

Woody was my faithful friend since college and lived to be 17.  Several months later, we adopted Miss Mellie. You can read all about Nick and Miss Mellie’s relationship in the archives under the category, “The Fun Side of Nick”.

Nick thought she made a great task strip for his PECS icons…..

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Now,  we are in a new chapter having recently adopted a new kitten from the shelter.  For more information click@ https://nickspecialneeds.wordpress.com/2014/09/29/blog-105-furry…needs-families   She has been here for a few weeks and is settling in well.

We decided to name her Kibbie……

Kibbie

Kibbie is a 5 month old tabby.  At first she was jumpy when Nick made his loud noises. But like the rest of us, those stimming sounds and yells are becoming white noise to Kibbie as well. (Well for the most part) 🙂  I am working on getting Nick to dangle the wands and throw cat toys for her to fetch.  He is also serving her food dish each evening.  My heart swells when Nick plants kisses on her head.  I posted a video last Friday on the Facebook Page (Down Syndrome With A Slice Of Autism).  There is also a video of the kitten playing fetch posted the week before.

It looks like the two of them are getting along nicely……… (yes we like taking sleeping photos in my family)

Kibbie and Nick

According to Brain Balance Centers, (http://www.brainbalancecenters.com), “The right family-friendly pet may be just what your child needs to better cope with daily stressors and other overwhelming sources of stimulation. Owning a pet may help ease these daily anxieties and help to better facilitate socialization and understanding. It may also benefit a child who struggles with sensory, social or behavioral issues.”  I look forward to sharing the new adventures of Nick and Kibbie with you.  Stay tuned for this and most likely a third installment of “Stuff On My Cat”.  Thank you for reading and sharing Nick’s world (and humoring me when I write about cats).  That’s what is in my noggin this week. 🙂

 

~Teresa

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

Blog #104~ Parenting and Discipline

Blog #104~ Parenting and Discipline

I recently was in a conversation with two young mothers of school age children. Both were talking about how much they did for their kids.  One mom commented that her daughter was old enough to make her own bed.  Yet she would do it herself because her daughter did it so sloppily.  The other one talked about scrambling to get the lunches made and double checking to see if all the homework was in their backpacks.  I scratched my head and wondered about this. Why weren’t they using these opportunities to help foster independence in their children?  I think as a mom, sometimes it’s just easier to do it yourself instead of constant reminders and nagging.  But in the long run, this does nothing to teach your child responsibility. Which brings me to my point this week; parenting is not only disciplining your child but also staying disciplined yourself.

When you are raising a child with special needs, it is even more difficult to teach independent living skills. Things take longer to learn with deficits in speech, gross motor and fine motor skills.  The process of putting on shoes and socks can be a ten minute ordeal.  With the bus coming at 7:25 a.m. the morning may not be ideal to use as a teaching moment. But you can carve out chunks of time to practice independent living skills during down times.

My son, Nick is now 20 years old. He has Down syndrome and autism.  Once at a high school conference, his teachers and therapists pointed out how good he was at self-care (in fact the strongest student in the class). I attribute this to three things:

1. Providing those teaching moments to practice skills

2. Using visuals so he can be prompted

3. Staying disciplined in the routine rather than just doing it myself

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The most challenging thing I have ever done was getting my son with special needs toilet trained. It is also happens to be the greatest thing that I have accomplished in my life. It was certainly a marathon, not a sprint.  In fact it was the longest and hardest marathon imaginable.  And we stepped in a LOT of poop along the way.

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When I look back at that road, one thing stands out on how Nick finally got toilet trained. It was DISIPLINE! Yes, I worked with autism specialists, went to potty training workshops and used visuals.  But nothing worked until I disciplined myself to create a timed toileting schedule and stick with it.  This (combined with the fact that Nick finally was mature enough), led to the success of him getting out of Depends and into underwear.  And that was a glorious sight to see. 🙂

It was a long road but we made it to the other side, tada!

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The importance of staying disciplined as a parent will pay off in the long run. You can’t wipe your child’s bottom forever.  That’s what is in my noggin this week.

~Teresa