Posted in Down syndrome, Down Syndrome Awareness, Parenting Special Needs

Blog #202~ Down syndrome, A New Beginning

Blog #202~ Down syndrome, A New Beginning

So this just happened, I flew back to Texas over the weekend to be with my niece, who is also my God-daughter.  Courtney recently gave birth to twin boys.  Shortly after their birth last December, she called me with the news that one of the babies might have Down syndrome. The first thing I felt was excitement inside, knowing that God has many blessings coming her way.  I told Courtney that everything was going to be okay, and that I’d be there for her every step of the way.  I know this to be a fact, because I have been blessed for the past 24 years with my son, Nick.

My niece didn’t know that one of her twins would have Down syndrome until after she gave birth.  Just as I did, the initial shock can take your breath away and a myriad of emotions come at you in waves.  However, like me she has rolled up her sleeves and embraced this diagnosis fully.  I couldn’t be more proud of her.

The twins Gannon and Greyson 🙂

Gannon and Greyson

Courtney jumped right in becoming an advocate for her son, Gannon.  Last month, she gave a presentation to her older son’s elementary school class on World Down Syndrome Day……

Gannon WDSD

For World Down Syndrome Day, Courtney had special shirts made for her immediate and extended family, as well as friends…….

Courtney and family

Here’s my son, Nick wearing his shirt to support #gannonsjourney and World Down Syndrome Day….

Nick Down right perfect

There is a lot of love felt in their home, along with a load of testosterone, with four boys under one roof.  Her two little dogs and cat lay on the couches close by, seemingly like protectors providing comfort as we sat and visited.

Gannon and me

It was a great weekend holding, feeding and loving on the twins, along with a few games of Battleship, Candyland, Toilet Trouble and snap chat photos with the older boys.  In between all of this, we had a chance to talk about our experiences together.  During the course of these conversations, I flashed back 24 years ago when I gave birth to Nick.  I told Courtney and her husband Patrick, how the pediatrician pointed out the initial markers that might indicate my son could have Down syndrome.  My doctor gently showed me the brushfield spots in my babies eyes, the larger gap space between the first two toes, and the feeling of low muscle tone in his body.  Courtney gasped when I mentioned my pediatricians name, she thought I was joking.  It turns out that they have the same pediatrician as I did!  Not only that, her husband (who also lived in this same area outside Houston) had Dr. K as his pediatrician growing up.  Courtney started to cry as we found the similarities in our lives being so serendipitous.  They were happy tears.

Who would ever predict that this little niece and God-daughter of mine would follow such a similar path?  At the moment this photo was taken, 28 years ago I was just a doting aunt to her…..

Courtney and me

Here we are 29 years later…..

Courtney Gannon and me

In December, after the twins were born, her pediatrician pointed out similar markers of Gannon possibly having Down syndrome.  I told Courtney over the phone, that she had this.  She was already ahead of the game, with her experience having Nick as her cousin.

Courtney and Nick, 1994…..

courtney and nick

Courtney and Nick, 2010………

photo (116)

I handed my niece this journal, on Saturday.  It felt as though I was passing the baton over, as she starts her own journey…..

Journal

The journey will be filled with highs and lows as she navigates her son having Down syndrome.  As the pen moves across each page, her eyes may be filled with tears during the struggles as he grows.  But there will also be many smiles when he triumphs the milestones of crawling, sitting up, walking, feeding and so much more.  Each benchmark will take longer to reach and require much more work.   But that is what makes these victories even sweeter.  My niece is just beginning this new path, and I both smile and take a deep breath inside, knowing what lies ahead.  My son has changed my life forever and filled me with God’s grace.  Like his cousin Nick, Gannon will touch many lives and teach lessons of gratitude in the process.

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

~Teresa

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #226~DS-ASD and Being on Holiday High Alert

Blog #226~DS-ASD and Being on Holiday High Alert

The Christmas tree has been taken down, and all the decorations are packed away.  Now I can let out a sigh of relief.  The three celebrations both before, during and after Christmas with our families, were action packed.  We stand on guard, watching for signs of stress that might trigger a meltdown or other undesirable behaviors.  Our son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  The sensory overload of noise, crowds, overstimulation, and changes in routine all make for a dangerous cocktail living in the world of autism.

One thing that I have learned navigating Nick’s world with a dual diagnosis of DS-ASD is that you can’t let your guard down, EVER!  So was the case over the holidays, which for the most part, went smoothly.  Christmas eve while in route to mass, Nick rattled off a stream of swear words that could rival any salty, crusty sailor.  While the rest of the congregation was praying for good health and world peace, I prayed that Nick wouldn’t drop a G-D bomb in those moments of silence and genuflection.  Thank God, he settled down and was quiet during the service.

nick 2018 christmas

After Christmas we headed down to Texas to celebrate with my family. Our flight down to Houston was smooth.  We even take him into  the of the United Club these days. Yes, there were crowds, but Nick knows the drill and loves going places, so he is motivated to be compliant.

Nick cruising through his favorite part of Chicago O’Hare Airport….

nick at o'hare

Once we reached the condos, the first thing we all noticed was every single floor of the three-story building had a fire alarm next to each stairwell.  It was a land mind of red buttons, just begging for Nick to pull them.  All hands were on deck for the next few days. We all worked together securing blockers, reminding Nick, with the compliance command, “Hands to self, big guys keep on walking”.  He was definitely staring them all down as we passed each one during our stay.

On the second day of our visit, we arranged to take family photos at a local winery.  Nick has never been a fan of these type of photo ops. Sitting patiently for photos irritates him.  Afterwards, we did a wine tasting and the kids ate some appetizers.  There was no structure to the afternoon, just a family enjoying each other’s company.  Nick grew restless, and while no one was paying attention to him.  So, he spiked a wine glass, shattering it all over the concrete floor.  As the staff member swept up the mess, Nick tossed his brother’s marinara sauce in the same direction.  The red sauce splattered all over the staff worker’s jeans as he swept up the shards of glass.  I apologized profusely and explained that Nick had Down syndrome and autism.  It’s at this juncture, that I knew that we had to get him out fast, before things escalated into a full meltdown.  There is no reasoning with Nick at this point, so a few of us did a cut and run, to get him back to the condo.

Later that evening, the whole family gathered into one condo so the grandkids could open their Christmas gifts.  While I was sorting out and distributing the gifts, a familiar sound blasted from outside.  I jumped up and made a beeline out the door to look for Nick.  I made my way downstairs in a panic, alerting the other patrons that it was a false alarm.  I didn’t know where Nick had run to, and it terrified me.  But thankfully, he was waiting at the bottom of the stairs with his eyes glazed at the blazing alarms and lights blinking.  I have no idea if my son pushed more than one alarm.  I yelled up to Al to call the front desk and let them know it was a false alarm.  Meanwhile, I grabbed Nick’s hand and walked a good 200 feet away, so he wouldn’t get the reinforcement he craved.  My hands shook as I asked Siri on my iPhone, for the number to the Conroe Fire Department, located nearest the resort.  But then, a calm focus came over me, as I explained to the firefighter about my son and his penchant for pulling alarms.  The gentleman was very understanding and kind over the phone.  Fortunately, I caught them in time, so they did not dispatch a firetruck, whew!

That was #54 on fire alarm pulls for Nick since 3rd grade…….

firelite-pull-station

Bottom line, this is a reminder that our immediate family can never let our guard down, EVER.  It’s easy to get lulled into the fun and festivities, and get caught up in the moment.  But that’s the moment, that Nick can wreak havoc, in just a split second.  We can’t expect extended family members to understand Nick’s impulses in the way we do.  My husband, Al and older son Hank have a system of checks and balances in place when taking care of Nick.  One of us always has at least one eye on him at all times, especially in new environments.  We are the primary caregivers, and ultimately are responsible for Nick.  Sometimes we screw up in life, and we did that day.  But, you just have to learn from it and move on.

While Nick can give us all a run for our money at times, he also has a way of showing his pure heart.  On this trip he got to meet his new cousins Greyson and Gannon who are twins.  The twins are a year old, and Gannon has Down syndrome.  Nick was drawn to Gannon and the bond was clearly evident.  Nick was very gentle around him.  As my niece, Courtney was packing up the boys to leave, Nick bent down and gently loved on Gannon.  My family looked on and in the silence, Nick brought us all to tears. 🙂

 

My Niece, Courtney is the mom of four boys and wasted no time in becoming a great advocate for Down syndrome.  This is a blog I wrote last March about Courtney’s journey, @ https://nickspecialneeds.com/?s=Down+Syndrome+A+New+Beginning

Christmas holidays while fun, can be stressful for all of us.  Having a child with special needs creates more challenges with more noise, crowds, overstimulation, and changes in routine causing sensory overload.  This holiday was a reminder for our immediate family to stay vigilant, and remain on watch at all times.  The responsibilities of being a caregiver for a child with a dual diagnosis of DS-ASD is staggering and should never be taken lightly.  Now, I’m going to exhale, learn from my mistakes and keep pushing forward.  As 2019 begins, my mindset will attempt to shift from holiday stress to a calm, warm, and cozy winter peace.  I wish you all the same for the new year.

snowman in hot chocolate

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

~Teresa

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan), Parenting Special Needs

Blog #204~ Lessons Learned from the Last Lecture

Blog #204~Lessons Learned from the Last Lecture

Randy Pausch was a professor at Carnegie Mellon and author of the national bestselling book, The Last Lecture.  He encouraged his students to attempt hard things and not worry about failing.  He would give out “The First Penguin Award” to the team who took the biggest gamble trying new ideas and technology, but failed to achieve their goals.  “This award celebrated out-of-the-box thinking and using imagination in a daring way.”  The title of this award came from the way that penguins jump into the water that might contain predators.  Somebody has to be the gustsy, first penguin, and take a bold leap into the unknown.

fail spectacularly

The takeaway is this, it’s important to attempt hard things and  you can expect to hit brick walls.  That is when you gain experience.

“Experience is what you get when you didn’t get what you wanted.”

This quote struck me as I was reading The Last Lecture over the weekend.  My son Nick, was born and diagnosed with Down syndrome.  Years later, he recieved a secondary diagnsosis of autism.  I didn’t get the “normal child” that I expected.  My path raising Nick has been very different then I had planned.  But along the way, over the past twenty-four years I’ve gained a great amount of experience in navigating my son’s journey.

Randy Pausch, a computer science professor gave his last lecture after receiving a diagnosis of terminal cancer, leaving behind a wife and three young children.  His book, The Last Lecture, co-written with Jeffrey Zaslow is a summation of everything Randy believed with some valuable lessons in “overcoming obstacles, enabling others, and seizing every moment.

There are so many lessons offered by Pausch in The Last Lecture.  I want to share a few that resonated with me, as a parent of a child with special needs.  When my son, Nick was born twenty-four years ago, I made some choices on how I was going to manage life.  I was dealt a set of cards, that I didn’t expect.  But soon realized, that I would have to play the hand differently.  This meant getting support to help my son reach developmental milestones and creating a home environment that supported his growth.  I also learned to reach out to parents, therapists and teachers with experience to help me understand how to help my son become the best he could be.

Randy Pausch cards dealt with

Another valuable lesson is in the approach to life when facing adversity.  Randy says, “Make a decision, are you going to be a Tigger or an Eeyore?”  A.A. Milne’s beloved Winnie-the Pooh characters are in two different camps.  I’d choose fun-loving Tigger over grumpy Eeyore every time.  Optimism can take you much further in life!

Randy-Pausch-Pooh-Quote

Here are a few more nuggets of wisdom from Randy Pausch, and how they relate to being a parent of a child, with special needs.  I found these lessons to ring true, especially navigating a dual diagnosis of Down syndrome and autism:

“All you have is what you bring with you.”

I understand all too well the need to be prepared for whatever situation the day may bring with my son.  What do I need to bring and what should I anticipate?  This could be anything from an extra set of clothes, spare iPod, PECS book, AAC device, snacks, Kleenex, stim toys and more.  Identify possible trouble spots/ triggers for meltdowns/messess and come up with ways to avoid these incidences.  Also, have a contingency plan in case as Randy says, “All hell breaks loose”.”

“All you have to do is ask.”

Randy tells a story about his Dad wanting to ride in the nose cone with the driver on the monorail at Disney World.  His Dad assumed they didn’t let regular people ride up there.  Randy told his Dad he had a trick and asked if his Dad wanted to see it.  He walked up the driver and asked, and the driver said yes.  You never know unless you ask, and this is true from my experiences working with doctors, therapists, teachers and other IEP members.  Ask for IEP drafts before the meeting, and to be included in your child’s goal planning.  Ask that the parent concerns (that you’ve written ahead of time), be put directly in the IEP at the beginning of the meeting.  These concerns will be a part of what drives the IEP.  Ask the doctor for whatever your child might need for their health like, prescriptions for therapy, nutritional supplements, evaluations for orthotics and to get all test results as soon as they come in.

“Start by sitting together”

This is essential when going to your child’s IEP (Individual Eduction Plan) meetings.  Randy’s approach to working with a group of people is simple.  Lay all the cards face up on the table and say to the group, “Ok, what can we collectively make of this hand?”  He offers a few tips for a successful group meeting like having optimal meeting conditions (make sure no one is hungry, cold or tired).  I’ll add in cramped rooms with  small chairs, as this has happened to me in past IEP meetings. Randy also adds, to let everyone talk, check your egos at the door and praise each other.  Finally phrase alternatives as questions, so instead of saying, “I think we should do A and not B” try saying,  “What if we did A and not B”.  This allows the team members to offer comments rather than defend their choice.  It opens up the discussion to get input from the whole IEP team.

The lessons that Randy Pausch shares in his book, are valuable.  Here are my takeaways as they relate being a parent of a child with special needs:

*Don’t be afraid to think outside the box and try something daring.

*If you hit a brick wall, learn from it and gain more experience.

*You can’t change the cards that were dealt, but you can change how you play the hand.

*Your approach in playing that hand can be with a positive or negative attitude, it’s your choice.

*All you have to do is ask.  They might say sure, why not.

*Start by sitting together, when it comes to IEP’s the team should come together to be solution oriented, not problem oriented in collaboration approach.

Thank you Randy Pausch for the valuable lessons you shared in The Last Lecture and for the reminder to take what you have learned so that you can help others who might be starting down the same path.

And as you navigate your path always remember this…..

Randy Pausch spending time

  That’s what is in my noggin this week.

~Teresa 

Follow Nick:

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs, Resources for Special Needs

Blog #147~A Father’s Perspective on Special Needs

Blog #147~A Father’s Perspective on Special Needs

Father’s Day is Sunday, June 19th!  As I did for Mother’s Day (Blog #144), this week features books written by fathers who have children with special needs.  My son Nick is 22 years old, he has Down syndrome and autism.  I am always searching for new information and gaining different perspectives.  If you are looking for a male/father perspective check out the book list below.  In addition, here are two dads that I recommend  following on Facebook.  Their websites are also included:

“Noah’s Dad” (Noah is 5 years old and has Down syndrome) http://www.noahsdad.com

“Autism Daddy” (Kyle aka “The King” is 12 years old and has severe autism and is nonverbal).  http://www.theautismdaddy.com. 

Books written by fathers who have children with special needs:

Austin, Paul: Beautiful Eyes: A Father Transformed (W.W. Norton, 2014).  A father reflects on his journey with his daughter with Down syndrome, beginning with her birth and ending with her life as a young adult living in a group home.

Daugerty, Paul: An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter (Harper Collins, 2015).  A father celebrates his daughter’s accomplishments, from childhood through college and impending marriage, and the joy she has brought to her family and those around her.

Book An Uncomplicated Life

Estreich, George:  The Shape of the Eye: Down Syndrome, Family and the Stories We Inherit (Southern Methodist University Press, 2011).  A poet reflects on the many influences of family after the birth of his daughter with Down syndrome.

Palmer, Greg: Adventures in the Mainstream: Coming of Age with Down Syndrome 2nd Edition (Bennett and Hastings Publishing, 2012).  Palmer’s memoir about his son’s transition from high school to the world of work, now updated with reflections on their family’s experiences since the original edition was first released.

Sagmiller, G.: Dakota’s Pride the Book: One Father’s Search for the Truth about Down Syndrome (The Gifted Learning Project, 2014). The book version of the documentary featuring questions and answers with professionals and parents of children with Down syndrome.

Taddei, S.R.: Room 47: Down Syndrome-A New Father’s Diary (Viera Press, 2012).  A father publishes reflections about his daughter with Down syndrome drawn from the journals he kept during her first year.

Thank you National Association for Down Syndrome (NADS) http://www.nads.org for the book list!

I hope these resources provide insight and inspiration from a father’s perspective. Cheers to you, Dads!  That’s what is in my noggin this week!

~Teresa

Nick and his Dad at Hawk’s Cay Resort….

Nick Kiss

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Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #135~Final Week in School

Blog #135~Final Week in School

This is Nick’s last week to be in school.  His 22nd birthday is almost here.  Then, the little yellow bus stops coming to the door.  My son Nick, has Down syndrome and autism.  He is aging out of the school system and will enter the adult world.  For the past few months we have been working with his current school and the adult day program he will be attending.  Nick has been at the new program part time for the past few weeks and the transition is going well. All the pieces seem to be in place.

It’s been an amazing journey watching Nick grow and learn.  The times have been joyous and triumphant, while often frustrating and heartbreaking.  Today I want to pause and give credit to all of the teachers, case managers, aides, therapists, bus drivers and school district personnel and respite workers that have helped along the way.

Nick started at the Klein School District (in Texas) at just 8 weeks old.  This early intervention program had a wonderful staff and therapists.  They worked to strengthen his low muscle tone (a trait of having Down syndrome).  When Nick was nearly 3 years old and not walking yet I said to his physical therapist, “I don’t think Nick is ever going to walk”.  To which she replied, “I have never met a child with Down syndrome who hasn’t walked yet”.  And you know what she was right.  Nick did eventually walk at age 3 1/2! 🙂

After age 3, Nick attended the early childhood program at the Arbor School in Houston.  He made so many gains with the combined co-treatment therapies offered by Texas Children’s Hospital.  Not only did he start to walk, he learned how to chew solid food without choking.

We moved outside the San Francisco Bay area when Nick was 4 years old.  I can’t begin to thank the Down syndrome Connection support group along with his therapists, Kendra his Kacy at Learning on the Move.  I learned ways to incorporate a sensory diet for Nick, and how to become an advocate for my son.

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In 2001, we moved outside the Chicago area.  During his elementary years Nick was in a full inclusion classroom.  This worked because of the excellent help provided by his support teacher, along with dedicated teachers, aides and therapists.  It was during this time that Nick’s academic goals shifted to more functional goals in his IEP.  While this was heartbreaking, I remember gaining strength in what his support teacher said.  At the beginning of his IEP meeting in 4th grade Sylvia said,  “Nick has a lot of strengths and we need to focus on those”.

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Nick also began to get private speech and OT at Suburban Pediatric Therapies.  He has learned so much and developed a great relationship with all the staff at this clinic. 🙂

Nick loves to work with Brian…..

Brian and Nick

The middle school years were rough for Nick.  Having the diagnosis of autism along with Down syndrome was a mixed cocktail with a bad taste of frustration (due to lack of speech). This lead to meltdowns and destructive behaviors.  The shift led back to a self-contained classroom.  I don’t think we could have survived this time without the support of NADS (National Down Syndrome Association) and Little Friends Center for Autism.  I learned how to manage the autism component with their help.  Getting support is crucial in a crisis situation as this was.  I also give a lot of credit to his support teacher Jess (aka “The Nick Whisperer”).  She believed in his capabilities, understood him and made the last years of middle school a success.

High school was a self-contained setting.  It was during this time I saw Nick mature and handle his behaviors much better.  He took pride in his vocational jobs both in school and out in the community.  I appreciate all the staff that worked with him and helped him grow during that time.

Working at Re-Store Habitat for Humanity with Ms. R….

Nick packaging door knobs_Habitat for Humanity (6)

Working at Tabor Hills Residential Community…..

Nick vacumming_Tabor Hills (3)

Nick Senior Portrait….

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After Nick graduated from high school he attended a post-secondary transition program (STEPS) where he continued to hone his vocational skills, had work jobs and community trips.  He has enjoyed this program immensely!  A big thank you for the staff at STEPS for helping Nick navigate his jobs, teaching him new skills, working to make his AAC talker device be a success and assisting with the transition to the adult day program he will start full time next week.

Nick on a delivery run job…..

Nick delivery

This journey with Nick has been a wonderful and wild ride, 34 fire alarm pulls and all!   I am grateful to all who have worked with Nick and touched our lives.  Truly, you all have been angels lighting the path along Nick’s way.  That’s what is in my noggin this week. 🙂

~Teresa

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