Monday, April 28, 2014

Managing Morning Mahem

For a child diagnosed with ADHD, morning time is not exactly the best part of the day. It is when my son is at his energetic highest. It is almost as if his body is making up for its inability to release energy during sleep. When Weston awakens, his body becomes like a tempest of this repressed energy. He jumps, squirms, screams, smirks and pesters. He becomes like a lightening rod sucking in all forms of sensory input and blasting it out in an explosion of sight and sound.

After 14 years of adjusting to this boisterous morning routine, I have become very adept at minimizing the pain of it. Yes, I am a manager of time and efficiency. I have created a morning schedule that seeks to minimize sensory input, provide instant nourishment and feed/clothe a fast-moving boy all in about 20 minutes flat. The exact amount of time it takes for Weston's meds to become effective. At this point, Nicholas and I are strapped into the car and zooming off to the school in an effort to quickly deposit the feisty fire bolt at the bottom of the high school stairs. Mayhem managed.

Once in a great while however, the kind spirit that resides at Weston's core manages to subdue the impulsive beast called ADHD. Amidst the arms, legs, hooting and hollering, the true essence of Weston's soul will sometimes exert itself reminding me once again that my son is not his disability. In fact, at times he manages to shine brightly in spite of it.

Friday morning Weston arose from a sound sleep by bolting upwards from bed and bounding down the hallway steps, two at a time. He entered the kitchen amidst a cacophony of sound effects,

"Grrrrrrrr, woooooo, weeeeeee, waaaaaa!" the wild boy yells as he heads to the kitchen table.

Muffy, our beleaguered beagle makes for her crate in a streak of brown and white fur, but not before the terrorizing teen shuts the metal door of the canine condo, squelching the hustling hound's only escape route.

"Weston please stop teasing the dog," I say for the one millionth time.

"Alright," Weston whines disappointingly and shoves his entire breakfast (a peanut butter sandwich) into his mouth.

"Mmmrrrrrmmmmwwwww," he mumbles at Nicholas and pokes him in the arm.

"Moooooooooom!" Nick shouts promptly sounding the "I'm having trouble tolerating my brother" alarm.

I assemble clothing, medication, headphones and deodorant and place it directly beside the teen tyrant, shortening our morning schedule by another minute.

Weston puts on his headphones and begins singing.

"We're not going to take it, no, we're not gonna take it, we're not going to take it anymore!"

In an effort to de-escalate the noise, I ignore Weston's singing and make a mental note to myself to encourage the lyrical lad to create a morning play list that does not include songs by bands with names like Twisted Sister.

"Hurry up Mom, we gotta leave," Weston shouts and pokes his brother once again.

"I can't take it," Nicholas screams as I grab my coat and head the dueling duo toward the garage door.

We climb quickly into the vehicle and speed off toward the school while I ponder once again the true meaning of the words, high maintenance.

We soon arrive at the school in our usual place at the bottom of the stairs.

"Bye Mom, Bye Nick," Weston shouts happily and leaps up the steps barely touching the concrete.

In front of my vehicle is a crosswalk. One of the cranky high school teachers is beginning to cross. In her arms is a large pile of heavy books. She leans to one side in an effort to straighten her leaning load of literature. She was Weston's 8th grade English teacher and not exactly one of his favorites. I look over at Weston. He has entered the doorway and I wonder for a moment, just what he will do.

I must admit, after his riotous antics of this morning, I half expect the boisterous boy to bound off into the school completely unaware of this poor woman's struggle. But he does not. Instead he stops. The impulsive boy is easily able to apply his brakes. He waits for the grouchy teacher to cross the street and walk up the stairs. He holds the door open widely for the crotchety crow and smiles at her brightly. The stern face breaks into a glowing grin as the typically cross teacher thanks the charming Weston for his chivalry.

I am speechless. Nicholas is also warmed by Weston's unusual display of morning kindness.

"Aww Mom, that was nice of Weston." he says and for just a moment Nicholas and I can see the heart of gold that is buried beneath that intolerable whirlwind of energy.

 It is as if Weston provides us with these little bursts of light, shining glimpses of the reality that is his soul and reminds us that despite his impulsiveness, his negativity, bad moods and anxiousness, he is still a lovable, kind and worthy human being.

We see you dear Weston.

We love you.

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Lisa Peters writes about family life at

Friday, April 18, 2014

Good Friday

When I realized this would post on Good Friday, I thought about how to approach that. I recognize not everyone celebrates Easter, and the last thing I want to do is alienate anyone. Here's the thing, though, my son just got invited to help hide Easter eggs for a neighbor that's having a huge party. He helped her last year and had an absolute ball. Knew and loved everyone there. Ate it all up with a spoon and talked about it for months. Thought for sure he'd jump at the chance to do it all again. In fact, just today, when asked what his plans were for Easter, he said, "I'm helping with an Easter egg hunt."

But. That was when he assumed the hunt was in the afternoon. As in, after noon. He is booked solid from 7:45 to noon each and every Sunday. He rides his bike up to church, watches the choir set up and practice, greets all the 8:30 parishioners, attends church, goes to coffee and donuts, then back over for the whole shebang again.

So, when the neighbor called to see if he'd be free at 10:30 to help, I approached him. I already knew the answer, but thought there was a shred of hope he'd be willing to go to just one mass, and still do the Easter egg hunt.

"Ah, ah, ah, no, babe," he said in his Billy Crystal impersonating Sammy Davis, Jr. voice. "You know that Sundays are my reason for living!"

When I was a little girl, I distinctly remember asking my mom, "Why is it called Good Friday. I think it should be called Bad Friday." I don't remember her answer, other than it didn't satisfy me.

When I gave birth to a son nearly 18 years ago, there wasn't anything good about those first days, weeks, months and even years. It was torturous. A large part of me died in the process. It took years and years before I no longer thought of the diagnoses and future as "bad."

There has been transformation, now, "resurrection," if you will. From what I thought would be and isn't, from the ashes of the burned out plans and dreams, came the reality of the new reality.

It is good.

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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.

Saturday, April 12, 2014

Cheat Sheet

I have always promised to be honest while I blogged.  I would rather have the truth even if it is cold, hard and painful than a pretty well dressed lie.  Sometimes the way I see truth is different than others do.  But even if you disagree on it, it is still my truth.

The truth hurts at times.  This last week the truth came and smacked me over the head. Hard.  I still have some lumps left on my heart and cuts left in my soul.

It started out with a visit.  For a while I had been asking a local organization to come out and meet our family.  I had found the organization on line and loved the support that they offered.  I really wanted to be part of it and I know some families that are.  They rave about it.

It too some time but they came to my home.  They met me and Cary Lynn.  Then they wanted to ask questions.  Sure, no problem.  I glibly claimed I had answers.

The first question, "Would you put a trachea tube in your daughter?"  What???  Well, I have been asked many questions before, but have rarely been stumped like that one.  I had to think.  Well, I know many kids in my SN circles that have them and really I already had stuck a tube in the child for nutrients, what's one more?  "Sure."  I say slowly.

Do you wish in life that sometimes someone would just dangle a giant fish line from the sky with a piece of paper attached to it saying here are the answers to these questions.   This was one of those times.

The questions were hard.  The consisted of quality or quantity of life and would I resuscitate?  I was told there are no "right" answers, but I felt for sure that there must be.  There has to be an answer.  So I answered.  I'm not going to go into what I answered, but I felt that I was making the right choice and holding up my beliefs.

While it is hard to answer these questions it is still harder to pretend that they don't exist.  To not talk about them or even think about them.  The truth of the matter is that Cary Lynn has multiple special needs and is medically fragile.  It is a fact of life like the sky is above us and the ground is below us.  It also does not make this organization mean to talk about these things.  They are trying to help us by supporting our family with these choices.

It also does not mean that I am pushing Cary Lynn into her grave.  Believe me when I say no one loves her like I do and no one wants to keep her here forever and a day like me.  But sometimes you have to look at the truth and decide whether you are going to deal with it, ignore it and hope it goes away, or run from it.  I am many things, but I'm not a coward.  Nor am I going to pretend these things don't exist.  They do.

What it does mean is that each moment is a little more special.  I cherish time with my kids.  I enjoy the little moments and inch stones.  I laugh more and love a bit harder.  I hold tight to my little miracles.  Both of them.  I don't spend as much time sweating the small stuff (well at least I try not to).  We also don't spend every day dwelling on our mortality around here.  That is morbid.  And unhealthy.  Mostly I spend my days trying to figure out where the magical elf lives who steals the mate to my children's socks and why I can't ever find my keys and favorite coffee mug.  We live our lives like you live them.  We aren't saints or heroes, just regular people trying to navigate extraordinary circumstances.

In the end I'm glad I had the conversation.  I needed to have it.  It hurts, but it also heals.  I love my daughter.  She isn't worried about what tomorrow brings into her life.  She is a happy and joyful child.  No matter what she always has a smile.  She is strong, brave, and in my eyes pretty much perfect.  So we will celebrate each day and enjoy each moment.  I will leave the future to take care of itself and dwell in the present and in the moment with my little ones.

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Amy Fields is a mother, blogger, and has run into a bit of computer troubles so that is why this is a little late.  You can follow her at her blog, Many Kinds of Families

Tuesday, April 1, 2014

When You’re “Out of Commission”

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How can you take care of your child if something happens to you?  Family caregivers need to have a backup plan in case anything changes with primary caregiver of the child with special needs.   

When my child had her transplant, we knew we needed help just so we could sleep at night until she got her sutures out.  As she has autism, we were afraid she wouldn’t leave them alone and there was infection risk especially with a compromised immune system.  All I asked for was a home health aide for 8 hrs. until they were removed.  I had everything in writing in the hospital discharge plan but it was rejected once we got home.  So we realized we needed to get the agency to validate insurance coverage (not just that they accepted our insurance) and hours scheduled before going home.  In a previous blog, I mentioned we were eventually successful but lost a week of sleep until it was okayed. 

Fast forward several years and I needed surgery for the first time ever.  I applied for both private insurance and emergency respite.  Unfortunately, after the fact the private insurance sent a denial 3 weeks after my surgery and emergency respite was approved literally the last half hour of business the day before my procedure so would have been impossible to set up.  The only thing that saved us is 2 days before, my daughter started having problems and was admitted to the same hospital.  My husband was bouncing back and forth between 2 floors to make sure we were both ok.  But I was actually relieved because I knew my daughter was safe when I couldn’t take care of her.  You know something’s wrong when you’re glad your child is in the hospital.

So what can families do?
I realized that we had to appeal everything.  Just like when she had the transplant and we eventually got services.  I thought I had everything covered the next time with a doctor’s note from both her and my physician.  But the insurance company denied it as “custodial care.”  They seemed to think it was just care for her autism.  However, she has multiple conditions, medications, and other procedures we follow.  Hopefully there won’t be a next time but now I know what to do. 

Tips for Families
Ø  If possible, get a surgery date with enough lead time to set up help.

Ø  Get a doctor’s note from your child’s physician listing all the care needed, not just that they’ll need care. 

1.      Medications (this can only be done by a nurse)       

2.      Injections (subcutaneous/intramuscular)

3.      Rescue medications (e.g. seizures, adrenal insufficiency, or other life threatening conditions)

4.      Medical Procedures (tube feeding, catheterization, fistula care, etc.)

5.      Emergency procedures (e.g. CPR/1st aid trained personnel)

6.      Requirement for 24 hour care (e.g. condition requiring monitoring, child doesn’t sleep through the night, etc.)

7.      Monitoring (e.g. vital signs)
Ø  Get a doctor’s note from your physician with activity restrictions and expected duration.  You may wish to ask for an extra day or two as most people resuming daily activities do not do things like lifting, diapering, pushing a wheelchair, and bathing etc. for others.
One of the biggest worries family caregivers have is what will happen to their loved one if they can’t care for them.  There are ways to get backup plans in place and people who can help you do that (see resources below.
The Arc

Caregiver Action Network-resources

Family Voices/Family-to-Family Health Information Centers

Title V of the Maternal/Child Health Bureau

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