Friday, February 28, 2014

A Lockdown for Kitty

My son Nicholas is 12 years-old. Although he is in the sixth grade, he possesses the spirit of a child who is much younger. He delights in watching preschool television programs, admiring the colorful cartoon characters like Dora the Explorer and Diego the Animal Rescuer.

I believe the genius programmers working at Nickelodeon have actually achieved a kind of kid's television nirvana. They seem to have secretly extracted information from the depths of my young child's mind and created super kid heroes who spend their days traveling on adventure-filled expeditions rendering life-saving assistance to hurt animals and sad children. It is as if these television creators have turned our flat screen into a giant crystal ball. This magic square window grants them direct access to the malleable mind of my impressionable boy. Like a drug addict seeking crack cocaine, Nicholas is hooked....but good.

Nickelodeon's latest new kid's series entitled, Paw Patrol, features a hardy group of backpack carrying pups. These brave rescuers drive a variety of heavy equipment vehicles, sending my awestruck automobile and animal aficionado into a gasping and breathless type of kiddie coma.

It is not unusual to hear Nicholas singing along with this lively litter of puppy police.

"Paw Patrol, Paw Patrol, whenever you're in trou-ble. Paw Patrol, Paw Patrol, we'll be there on the dou-ble!"

I believe Nick's choice of rescue-related programming is contributing to the development of a kind spirit and an altruistic mind set. In fact, if you combine his obsession for action adventurers with the recent safety drill training he received at the elementary school, perhaps you would not be surprised to see this super sleuth junkie transformed into the New Rescue Hero of our House.

Let me explain.

As you may know, we recently acquired a kitty who has quickly grown into a full-sized cat. This rapid growth however, has been accompanied by some unusual behaviors. Our feisty feline seems to have developed a sadistic streak. He delights in playing a game of Hide and Pounce Warfare, a kind of Hunger Games for cats.

He has become an emotionless destroyer of dogs and humans. A kitty-sized serial killer hiding covertly behind bookshelves or furniture, stealthily waiting for a chance to viciously pounce on an unsuspecting family member or our poor panicky pooch. He has bitten and scratched unprotected arms, legs, ankles and the wagging tail of our horrified hound.

This aggressive behavior has disturbed the kind-hearted Nicholas.

But fear not dear friends, for our little hero is quick to take his cue from a rather long list of favorite cartoon caricatures. My Rescue Hero Wanna-be has designed a strategy to protect the entire household from the warmongering antics of our militant mouser.

This morning, I was in my bedroom preparing to take Nick to school, when I was startled by a loud sound.

SLAM......went the sound of Nick's bedroom door closing tightly.

Just Nick closing the door too hard, I thought to myself and carried on with what I was doing.

I jumped again when I heard a rather long succession of...




I hurried out of my bedroom door only to find the cat streaking down the stairs in a frenzied bolt of flying black fur. The cats quick exit, a desperate attempt to escape from my safety-savvy son, who was in the midst of quickly slamming all the bedroom doors. This dramatic action, a carefully planned preparedness training procedure designed by Nicholas to deter the malevolent marauder from further maliciousness.

"It's lockdown Mom," he barked with a calm, yet assertive tone.

"Why are we in lockdown?" I asked, trying very hard not to laugh as the new Self-appointed Safety Sheriff began his first ever trial-run.

He placed his hands on his hips and with teacher-like authority, he slowly explained to his clueless mother,

"We have to protect ourselves from Flash. We need to be ready. You know Mom, sometimes people and CATS can hurt us."

Paw Patrol Rookie Recruit

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Lisa Peters writes about family life at

Wednesday, February 26, 2014

Talking about the realities with our kids.

Me: "MRSA can be deadly, you know."
Son: "Yeah, I've had that too."
Simultaneously daughter: "WHAT?" and husband: "Don't tell her that."
Me: "It's the truth. It's not like we can hide those facts, plus we have to tell them the risks. We can't protect them forever."
Husband: "Geez."
I brought my daughter to the E.R. the Sunday before a holiday last year because A) We always end up in the E.R. on a Holiday weekend and B) She had a nasty looking spider bite. It was raised and red and hot and hard to the touch and in the back of my mind I sort of knew it was probably MRSA but spider sounded less scary and so I went with that.
It was, of course, MRSA. Also known as the scary, hard-spelling name "Methicillin-resistant Staphylococcus aureus" which is known to send fear into the hearts of many immunosuppressed people and their parents. It's horrible to fight off, and can mean days in the hospital for kids like ours. Our son ended up in the hospital for almost a week when he had it and we tried the E.R. twice to drain it.
I've been thinking a lot about this conversation because I started to wonder if I throw too much at the kids too soon. Do I give their brains too much to handle for their age? For their development? Does sharing the truth and so much information make it easier or harder on them?
The truth is, I haven't a clue. I can only do what I promised both kids a long time ago, that I would always be honest with them about their healthcare. One of the rules in our caregiver/caregivee relationship is that we're honest with each other. They have to trust that I will have their backs when they need it and I have to trust that they will be honest with me so I can make informed decisions with them about their healthcare. I started thinking about what I did when talking to the kids about the harsh realities of their condition/treatments.
Telling my kids they are more susceptible to get a deadly infection isn't at all what I'd pictured my life to be like before I had kids. There are days when I feel like I am just monitoring the Dos and Don'ts of living a life-like theirs...
  • Take your meds!
  • Get regular labs!
  • Have regular kidney (and liver) clinic visits!
  • Wear sunscreen!
  • Stay out of the sun if possible!
  • Wash your hands!
  • Don't touch that bird!
  • Don't feed the birds!
  • Don't touch that ______!
  • So and so is sick, so you can't see them today!
  • Listen to your body...
There are some days I can't believe the conversations I must have with my kids, but then I realize I can only do what I think is best and helps prepare them. It's hard to talk about death and the realities of a disease that is unpredictable.
Even though it's hard, honesty always wins.
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ulia Roberts co-founded Support for Special Needs in 2010 for families touched by special needs. Married to Julian and living in Atlanta, Georgia, they own a small business. They are raising two kids who survived kidney transplants at age eight and require liver transplants in the future as a result ofARPKD/CHF, they also both have vision disorders and learning disabilities.

Tuesday, February 18, 2014


I was out-of-town recently and my husband got to "be me" for four days. That included driving the carpool. He had not spent much time before with T., a boy in Wil's special program in high school. When I got back I asked, "How'd it go?"

"Well, I really enjoyed getting to know T. better," he said. "He's really intelligent."

"Yes, I know," I said. Frankly, I was a little annoyed with him for saying that. It pushed my "intellectualism" button, that only those with lower "intelligence" need special programs, that we, as a culture, value traditional intelligence above all else. On and on I could go, but you get the idea.

My husband continued,"I said to T., 'You're really smart, T., that's one of your strengths.'"

T. replied, "Thanks. You know, Wil has strengths, too."

"He sure does," my husband agreed, "what do you think some of them are?" he asked T.

"Well, friendship, for sure. He's really strong at relationships."

My husband was blown away that not only had T. identified that in Wil, but clearly valued it.

Wil has a million strengths, but if I had to pick one and throw away the rest, I'd keep "strong at relationships."

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

Tuesday, February 11, 2014


Warning, the images you are about to see may be disturbing.  Please be prepared.

Are you shocked?  No?  Well some people are.

When we went back to the hospital for the bajillionth time my daughter came home with a new piece of hardware.  An NG tube.  For those of you who don't know an NG tube basically goes through the nose and empties into your stomach.  Cary Lynn needed one.  She wasn't gaining weight and this helps her out.

I was prepared for the tube but what I wasn't prepared for was the reactions.  The sad looks from people, the comments, and the fear that comes with the tube.

I also was surprised about the discussions that took place from tube parents.  To take your child's picture with it in our out.  Show or no show.

I don't like to step on toes.  I also don't want to tell you how you should feel about the extras your child comes with.  Each person is unique and your feelings are important.  I just want to give you something to think about.

We each come into the world with nothing.  We each are given tools and gifts to get along the journey we call life.  Some people have the tools built into them.  Some don't.  Some need more help to make it along the journey.  Some need wheelchairs and feeding tubes.    Some need one or two items.  My daughter needs all of those.

I am proud of my daughter.  I am proud of her abilities.  That does not mean I am always thrilled with all her extras.  I grieved.  I mourned.  Then I looked into her eyes and said, "We can do this."  And we have.

So when she came home with the NG tube I dressed her up and took pictures.  I don't ever want her to be ashamed of what she is.  Ever.  Taking her tube out for pictures does not make the tube go away.  I do believe that taking the tube out sends a message that I am ashamed of what my child has.  And I'm not ashamed.  I am proud.  So very proud.

This is feeding tube awareness week.  There are all types of tubes and all types of people who need them.  I will not hide what my child needs for survival.

Like I said I'm not trying to step on toes.  Just giving you food for thought.  The way you take it is up to you.  But I won't hide my daughter's tools.  I will continue to take pictures and celebrate her life.   Her journey is unique and her tools are necessary to her journey.  I celebrate her journey and her life.

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Amy Fields is a wife, mother and advocate.  You can find her at her blog, Many Kinds of Families.

Wednesday, February 5, 2014

Never too old for nursery rhymes!

It's bath time for my 14 year old autistic son. The teen who has motor planning issues and low muscle tone. He needs assistance, although I am slowly encouraging him to become more independent.

The soaping and washing is a bit of a chore, as is the shampooing of his hair. It is all pretty standard stuff and rather boring!

But, wait.....

A while back we discovered a way of interacting with each other in a meaningful and fun manner. Hello to an old favorite nursery rhyme. Goodbye to drudgery and boredom. Hello laughter, engagement, joint attention and experience sharing.

Me: Singing loudly and merrily.
"The wheels on the bus go round and round"
I stop and wait for my son to respond

Him: Smiling, he makes the sign for "Dad"

Me: "The wheels on the bus go round and round, round and round. Dad on the bus goes......"
I stop and wait for my son to respond.

Him: Has a little think for 20 seconds. "Oh, no!" (he speaks!)

Me: "Dad on the bus goes "Oh, no. Oh no" (singing off key!)

Him: Peels of laughter.

We carry on in this manner. Me providing the opportunity for my son to participate in the nursery rhyme. Him gleefully choosing people, animals and objects to be on the bus; then choosing the noises and words that they are using.

Our rhyme is never the same.

The babies on the bus go wah wah wah
The dogs on the bus go woof woof woof
The driver on the bus says move along please
The horse on the bus goes neigh neigh neigh
The mum on the bus goes ssh ssh ssh
The car on the bus goes beep beep beep
Tom on the bus says go Nick, go Nick
........ and the list goes on...

We pause and wait. We reference each other's facial expression. We read the body language being used. We communicate. We talk. We laugh.

We have an amazing connection.

14 years of age and still interested in nursery rhymes.

Pah! Who cares? I don't.

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Di blogs about autism, teenagers and RDI over at The Bright Side of Life

Saturday, February 1, 2014

The little boy who died of a toothache: Why dental care is so important for children with special needs

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If you’re like me, your child has so many medical appointments it may be hard to keep up with routine or preventive care.  But family caregivers need to know how essential dental care is for their children.  Parents may think, oh it’s just teeth, and have so many more urgent things to do.  But oral health is just as important as other physical health. 

What family caregivers need to know about dental care

Oral health can affect physical health.  Once a problem sets in, it’s not “just teeth.”  There can be complications like infection etc.  Sadly, one young boy died from lack of access to dental care.  (see  12-year-old Deamonte Driver of Maryland had an abscess in his tooth which spread to his brain.  ABC news reported that after 6 weeks, two neural surgeries, and $250,000 in hospital bills later he was dead. “An $80 tooth extraction could have saved his life.” 

Think it can’t happen to your family?  The ABC report noted that “By the age of 11, approximately half of children have decay.  When a cavity goes untreated…, the decay eats into the center of the tooth, and eventually enters the nerves and blood vessels. From there, bacteria get into the blood stream and can travel virtually anywhere.”  That’s what happened to Deamonte.  It’s that simple. 

 Photo courtesy of PBS Frontline

Where families can find dental coverage for their children

Many family caregivers do not know that the Affordable Care Act Marketplace has dental benefits.  Qualified Health Plans may include dental coverage so it’s important for families to look for that when they enroll.  Also in the Marketplace are “stand-alone” dental plans.  Remember that many families will also qualify for help to pay for coverage and the Marketplace will automatically calculate that.  The deadline for open enrollment is 3/31/14.  Family caregivers need to check if dental benefits are included in their medical plan at  Families can also find information on available stand-alone dental plans at


If your child is also eligible for Medicaid (children with special needs can have both private and public plans), dental coverage is included.  The private plan would pay first; Medicaid pays what’s left over.  Even if your child ONLY has Medicaid, he or she can get dental care.  It is important to make sure that your dentist participates in either the private plan and/or Medicaid.

If your child is uninsured, Donated Dental Services may be able to provide free care.  To find the program in your state, see  In addition, many states are holding free events on February 7-8 nationwide.

Other things family caregivers can do

Our child has been in and out of the hospital over a dozen times, sometimes for months at a time, over the past 2 years.  We make sure that we catch up on medical appointments such as immunizations, vision, and oral care as soon as we get home.  We do everything we can to keep dental care going while she’s hospitalized.  We brought retainers to the hospital every time, because she now can’t have dental implants due to her kidney transplant.  Instead of having her wear them during the night as usual, we had her wear them during the day when we were there and can keep track of them.  We decided this after they were almost once accidently discarded on a meal tray!  The only time she didn’t wear her retainers, besides for medical procedures, was when she was in ICU on a ventilator for week.  The dentist couldn’t believe her teeth were still straight after everything she’d been through!

We also bring all of her dental hygiene items such as plaque remover, toothpaste, floss (those dinosaur shaped ones work great for kids), and mouthwash.  Due to her autism, our daughter needs help so we brush first thing in the morning, after meals, and before bedtime when we leave.  Once her bottom retainer wore out in the hospital, so the dentist kindly made a mold of her teeth in case we needed a replacement again while hospitalized, and made a second retainer just in case and only charged half price.    

Families need to be aware of serious symptoms related to dental disease.  Warning signs according to various articles on Deamonte’s death, include headache and face swelling, in addition to pain.  Some hospital ERs even have dental centers, but hopefully it won’t come to that.

Family caregivers need to get the best dental care for their children with special needs, along with other medical care.  There are now ACA plans available, and Medicaid always covered dental care but families may not know this.  By keeping your child’s teeth healthy, it will keep him or her healthier too!

Resources for Family Caregivers of Children with Special Needs:

Bright Futures in Practice: Oral Health—Pocket Guide – Georgetown University AUCD DC

Dental Tool Kit – Autism Speaks

Oral Health (Salud Bucal) - American Academy of Pediatrics information for families

Oral Health - Maternal/Child Health Knowledge Path –U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal/Child Health Bureau

Oral Health Tips - Vanderbilt Kennedy Center AUCD Tennessee

Remain Hopeful,

Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB