Al Roker, can you help with product development?

I would like to propose the development of a thermometer with voice output.

A thermometer/weather device that could be individually programmed to say what a person with a disability should wear under certain weather conditions. 

It could be secured to the outside door and activated when the door opens. For example, it might say (in different languages):

It's raining... raincoat and umbrella needed.
It's cold.......sweater, jacket, or sweatshirt needed.
It's hot........need sunscreen, lightweight clothes and a hat.

Now, you may be asking why is this product necessary?

Well, one very cold day in Florida (below freezing) 
Lauren boarded her bus dressed by 
her in-home support staff in a thin, short sleeve shirt (no jacket or sweater). 

On another occasion in brutally hot mid-August, Lauren was dressed by another staffer in a pair of leggings with winter boots. 

Please know that Lauren has sweatshirts, sweaters, jackets, pants, shorts and shirts in every color in the rainbow.  

Apparently some life skills, just can't be learned...


So I'm asking .....Al Roker can you help with this?

Dear Mr. Nielsen

Dear Mr. Nielsen,

My mother says that you gather information from viewer "diaries" and devices connected to televisions in selected homes. 

Please know that I am 28 years old, white, protestant and speak English.

If you collect information from my apartment, 
please know that I didn't turn to these channels or programs:

Disney channel in Spanish.

Bishop T.D. Jakes.

A church service conducted in Creole.

"Caso Cerrado" in Spanish.

Joel Olsteen.

"Pasión De Gavilanes" or "El Clon" in Spanish.

Nothing against these programs....just saying they were not my choices.

If you want to know how the programs were turned on, please call my mother.

With thanks,

Lauren


Keeping it real!

Donna

Gratitude

We don't say thank you enough for the wonderful people who work with Lauren. We are so grateful to you for: 

Showing up on time

Smiling and laughing 

Picking the perfect outfit for her to wear 

Making sure her hair elastics and earrings match her outfit

Keeping her clean

Giving her medications on time

Cutting her food

Helping her brush her teeth

Hugging her

Celebrating every accomplishment

Keeping her safe

Cleaning her glasses

Dancing with her

Helping her board her bus without tripping or falling

Making sure her seat belt
is on

Wiping her nose

Calling us when she is "off" or has a rash or blister on her feet 

And "being there" for Lauren when we can't be ...........

"Thank you" just doesn't seem like enough...

Namaste,

Donna and Tom

A girl has to eat!

Lauren LOVES to eat! 

So, we work tirelessly at keeping her active and eating healthy.

Lauren's refrigerator is filled with fresh fruit and vegetables.....no cakes, cookies, potato chips or soda. If unhealthy items are in her apartment, she will eat them....every last morsel!

In addition, Lauren is allergic to many foods.

A new staffer arrived with her "lunch" in tow (a whole rotisserie chicken, quart containers of coleslaw, potato and macaroni salad, two packages of chocolate cookies and two large bottles of orange soda).   

I called the agency to report our concerns.

The agency director said I had to "understand that the woman was entitled to eat while at work". I responded that we encourage all staff to eat "with" Lauren. The woman was welcome to eat fruit, yogurt, make a sandwich or salad.

The next day, Lauren's neighbors called to report that the woman was outside at her car eating from a large cooler in her trunk. 

They presumed Lauren was in her apartment alone.

Trust me, I know a girl has to eat.....but isn't "working" with Lauren supposed to be about Lauren? 

Aren't staff there to help Lauren live her best life...not create more problems?

Keeping it real,

Donna

You're Fired!

Some of Lauren's "support staff" have been far from what any parent would wish for.

It can be so easy for others to say to us, "Why didn't you fire her?"

But, the consequences of firing someone have to be carefully considered.

Often, there is little or no "back up" staff to cover. Parents are already called upon to cover holidays, illness and vacations. 

So, what can a family do? 

After months or years of getting the individual used to their new life, do you bring them home and start all over?

Or, cover the shifts until a new person is found (not easy) and oriented?

Parents who have finally been given a respite from decades of  24/7 care are now found back on duty (older and out of practice). Parents who have jobs, other responsibilities, and their own health issues.

I have often slept at Lauren's apartment. 

After giving her a shower, fixing her breakfast, and helping her board her bus, I head home or to work and begin calling the agency to check on the status of the case. 

I am not suggesting in any way shape or form to continue with a staff member who is abusive, irresponsible or unsafe. 

What I am saying is that parents have to carefully consider the consequences of "firing" someone.

When hiring or approving a new person to work with your loved one, trust your gut.....if something doesn't feel right....don't agree to the person. 

As hard as it can be in the beginning, it will be even harder later.

And...always, always..... have a bag packed!

Keeping it real,

Donna

Supported Living Coach Interview Questions

In Florida, "supported living is an opportunity for adults with developmental disabilities to choose where, how and with whom they live. People receive personalized supports needed to maintain their own private home." 

What are Some of the Responsibilities of a Supported Living Coach?

• Teaches new skills
• Assists with tasks and does things with or for the person
• Coordinates community resources and natural supports

"Activities include assistance with the procurement of housing, financial management and banking, cooking, cleaning, shopping, personal care, personal relationships and community connections to mention few.

Supported living coaches must also provide emergency response 24 hours a day/7 days a week." http://tinyurl.com/ogzdcux

Based on our experiences, if you can find a supported living coach to interview, we suggest asking the following questions:

Do you know the difference between an orange and a grapefruit?

If grocery items are "buy one get one free", who gets the free one?

Can the individual drive in your car? 

Do you know that the landlord doesn't send a monthly bill for the rent to be paid?

Do you work weekends?

When going grocery shopping, can you go with the individual without an entourage (behavior assistant, in-home support staff)?

Are you planning on getting arrested for drug possession at midnight with your 3-year-old alone in the car?

Are you planning on going away for a month and quitting the job when you return?

Please read between the lines to understand why we suggest asking these questions!

Keeping it real,

Donna

In how many languages can you say, "please no cold shower"?

Tom and I were just about to start dinner when we got a call that the hot water heater was leaking at Lauren's apartment.

Quickly, Tom jumped into the car and headed over. He cleaned up the water and called a plumber.

The plumber couldn't get there until the next day, so there would be no hot water for Lauren's shower in the morning.

I Googled how to say "no shower, no hot water" in Spanish and texted the overnight staffer with the message.

Then, I texted another staffer who speaks Spanish and asked her to call or text the overnight staffer to tell her "no shower, no hot water".

Tonight, I am praying and hoping that the message was understood.

This is one of the realities of communicating with many staff members in Florida.

Many speak Spanish or Creole and little English.

Keeping it real,

Donna

It's bad when paramedics know you in the grocery store!

I'm not getting all mushy here, but there really is always hope.

Lauren has had seizures since she was about a year old. 

We tried a wide range of medications with little success getting her seizures controlled.

We were "frequent fliers" with calls to 911. When grocery shopping, we often ran into paramedics who would call out "Hey Lauren!".

Lauren was in the emergency room more times than I can count, even hospitalized one time on a ventilator. There were many dark days.

One day Lauren's neurologist said, "Why don't we try this medication"? 

As desperate parents, we responded, "Let's try it".

It has been a miracle drug! 

Lauren has been seizure free for 3 years!

So, the lesson in this story...Never give up hope!


Keeping it real,

Donna 

Make new friends

"Make new friends but keep the old, one is silver and the other gold". Oh, how I loved this song at Girl Scout meetings and camps!

Many years later, I learned about the challenges of making and keeping friends when you are raising a significantly disabled child.

In most situations, you can't have good friends without being a good friend.

Being a friend comes with responsibilities that often exceed the capabilities of families like ours.

I grew farther and farther away from friends because I couldn't talk on the phone, visit them in the hospital, deliver a covered dish, attend reunions or watch their dog or cat.

Some days, working and caring for Lauren didn't leave much time for sleep or anything else.

"Friendly" acquaintances were made at Special Olympics, dance class or adapted baseball  events.

As soon as the season or program was over...families moved on to solve or attempt to solve their own problems.

Most friends and colleagues raising "typical children" had no idea regarding our struggles. 

Over time, many parents of children with autism stop explaining the day to day struggles and slowly shy away from conversations with friends and colleagues that center around "my son is doing so well in school", "John just got into medical school", "Jennifer just got a new job" or "my daughter is getting married".

So how do parents of children with autism make new friends and keep the old?

Do we need a new song about friendship?


Keeping it real!

Donna

Food and Refrigeration

Tom is Italian, so of course Lauren LOVES pasta!
We always keep extra jars of sauce in her kitchen cabinet. 

Pasta with sauce usually works well for staffers who can't cook. Boiling water for the pasta and putting some sauce over it... is usually part of their skill set.

So, one day when I was putting groceries away in Lauren's kitchen cabinet, I saw a jar of half emptied pasta sauce....with mildew growing! YUCK!!!!

Please don't think Lauren did it....she is 4' 9" tall and couldn't reach the shelf it was on without a step ladder.

So, I ask.... at what point in life do we learn about food safety and refrigeration? 

Specifically, when a jar of pasta sauce is opened....and half is left, does it go into the refrigerator in most homes? Or, back in the cabinet?

Should this be an interview question for agencies hiring staff to care for people with autism or other disabilities?

Just saying....

Keeping it real,

Donna

The empty parking lot

Parents struggle at different times with letting go of their children. The first time with a babysitter, first ride on the school bus, driver’s license, first date and first apartment.  

Parents of children with disabilities have the same feelings, but often their concerns are far greater. They ask, “Who will give him his medications?” “Who will take her to the bathroom?”

            

Lauren’s first bus trip to Disney World was an enormous milestone. Before the "big day" Tom and I talked about our concerns. “How do parents let go?”

The day of the trip arrived and we were up at 5:30 a.m. to meet the bus. We drove to the drop off point to find the parking lot filled with cars and eager participants excitedly waiting for the bus. 

Parents were reminding their sons and daughters to “stay with the group”, “remember your money”, “put sun screen on”, and “drink plenty of water”. 

Staff listened patiently to parents who reported about their son or daughter’s medications and other health or behavioral issues. 

The air of excitement among the participants was palpable. Laughter and “high 5’s” were abundant. 

At last the bus arrived. 

Tom and I walked Lauren over to the bus. We gave her hugs and she quickly boarded the bus and took a seat. She didn’t look back for a minute! We stepped back and tried to find her face through the tinted bus windows. 

Within minutes, the bus pulled away.

Tom and I hugged each other and stood waving until the bus was out of sight. We turned around and  noticed that all of the other cars were gone. We were the only parents in the parking lot!

Later, we saw some of the parents shopping in Home Depot and sipping coffee at Starbucks. One parent waved to us and said, “don’t worry Lauren will be fine”.

At midnight, the bus arrived back from Disney. The participants and staff got off the bus looking tired and happy. All reports were positive, “We had so much fun”, “No problems”, “Great Day”.

How parents let go still remains a mystery to me. 

However, I have learned that parking lots empty quicker as children with disabilities get older. 

Parents and children do move on and a bus trip to Disney World can be a wonderful first step.

Thieves

Inquiring minds may want to know what has been stolen from Lauren's apartment.

I know it is hard to believe but her food stamp card was stolen! And, yes we know who did it (only 3 people knew the pin number) and we have a print out of purchases made and where.

Bottles of water often go missing....not a bottle or two, but 6 or 12 packs.

Clothes (especially shirts).

$$$$$$

Packages of chicken breasts have been found missing from the refrigerator.

But, the most frequent item is..........

Laundry detergent!!!

So, now you know!!!

Keeping it real,

Donna