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

Blog #245~DS-ASD Update

Blog #245~DS-ASD Update

What does life look like now for Nick since the pandemic hit over 2 years ago? It’s very different, uncomplicated and often redundant. Sometimes it feels like the movie Ground Hog Day, with the same thing happening over and over. It’s not a sad life, it’s just a different life. My son is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). This week, I want to paint a picture of what life is like for Nick and our family these days and how we make his days meaningful so he knows his value and worth.

For 10 years I wrote diligently and posted a blog each Monday. Then the pandemic hit and Nick’s adult developmental day training program shut down. Well over 2 years later, he still sits idle on their waiting list hoping to get back in. Part of the reason my blogs have been sporadic is due to taking care of Nick at home, while I continue to work. This is no easy feat when you are trying to tune out the many sounds of autism. Since my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism, was published in May of 2020, many doors have opened up to presentations, workshops, webinars and podcasts. It has been very rewarding doing these projects and sharing strategies on how to navigate co-occurring Down syndrome and autism. Later this month I will be presenting in person at the National Down Syndrome Congress (NDSC) in New Orleans!

Order on Amazon at https://amzn.to/2W3Un6X

So, here’s a look at our new normal for the past two years. For most of us, this has been remote work, Zoom presentations and meetings which has been a great vehicle to reach a large audience across the country. Creating these presentations doesn’t feel like work, it’s exciting and creative. But, it can be difficult to concentrate when your son is constantly tapping, verbal stimming, pushing the microwave fan button, throwing things and running the water faucets. Nick also goes down some interesting YouTube rabbit holes. Lately he’s been diving down to find some real “gems”. This includes finding Thomas the Tank Engine the dark side, (picture Thomas with a black eye and goatee and guns blazing). Another gem has been fire alarm testing. Despite our efforts to clear the history on YouTube, he keeps finding those blaring alarms. It’s obviously fulfilling a sensory need he craves. Better on his iPad and not on a real fire alarm. 🙂

As I mentioned earlier, Nick’s day program has been a no go due to staffing shortages. It’s devasting to see that individuals with disabilities who are the most vulnerable, can’t get into day programs. Despite hefty signing bonuses being offered, many day programs continue to struggle with staffing. We have done our best to create some structure at home and provide him with personal support workers who assist him at home and with community activities outside the house. Structured teaching activities benefits include developing and maintaining educational and fine motor skills.

Structured Teaching Activities
Activities include matching, sorting office supplies and puzzles

Nick also has several jobs around the house which include unloading the dishwasher, recycling, vacuuming, and helping to prepare meals. These jobs along with the structured teaching activities are meaningful and bolster his confidence.

Nick unloading the dishwasher
Working at home

In addition to in home activities, Nick also enjoys going out into the community with his personal support workers. Having respite care is important for families, so each member gets a break and can go out and enjoy time on their own.

Fun at the Park
Lunch date with personal support worker

The new normal at home with Nick is working largely due to having wonderful personal support workers and offering meaningful activities. We have looked into other day programs, but most have waiting lists or lack the staffing to accommodate Nick’s needs. So, we just keep leaning into the new normal and doing the best we can to find balance in both our work and Nick’s needs. As a mom, it gives me comfort to hear him say “happy” and lean into life at home. Even if it does include those trips down the YouTube rabbit hole.

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

April is Autism Awareness Month

April is Autism Awareness Month

autism awareness 2016

April is “Autism Awareness Month“.  I am quite aware of autism every day of the year.  My son Nick, is 22.  He has Down syndrome and autism.  He requires constant supervision 24/7, 365 days of the year.  There is some funding through the state which helps pay for his adult day program and respite care.  In addition, he receives Supplemental Security Income monthly.  But this doesn’t come close to covering the costs. Autism is the fastest growing developmental disorder, yet most under funded.

Putting a ribbon on the car bumper is not going to do enough to help families living with autism.

autism ribbon

My hope is for more acceptance, compassion, research, funding and programs to support families living with autism.  And, we need more “family” bathrooms to be accessible in public facilities.  Nick can’t go into the men’s rest room by himself.  It would not be safe for him to go alone.  Not to mention that he would flush the toilet repeatedly, then run every single faucet full blast.

Autism statistics in 2000 were 1 in 150.  By 2010 it was 1 in 68.  Autism is not going anywhere.  In fact, people with autism are growing up and aging out of the school system like my son, Nick.  Families with autism need more support.  We can’t do it alone.  That’s what is in my noggin this week.

~Teresa

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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…..

IMG_3865

Task strip for airline travel……

IMG_3866

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 🙂

elbows

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….

photo (108)

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 🙂

Christmas 2

Nick and his brother Hank in 1999