My six year old son has always dealt with sensory issues. He was in occupational therapy for years because of problems eating foods with certain textures and for his mental battle with being touched. As far as touch goes, he’s now on the opposite end of the sensory spectrum and can’t seem to keep his hands off anyone showing bare skin.

But there is another issue that the therapists don’t know how to deal with. He gags. A lot.

Now I’m not talking about gagging when he doesn’t like how mashed potatoes feel in his mouth. We’ve moved past that. I’m talking about gagging when a bike helmet strap rests under his chin, or when he’s wearing a turtleneck, or when he’s in a wedding and is supposed to wear a bow-tie. One time he was a ring bearer and wouldn’t wear the tuxedo tie, jacket OR vest. We couldn’t even button up his shirt. He came down the aisle resembling Eric Estrada, minus the chest hair.

When he has a cold it’s even worse, as he proved the other day during his quarterly hearing test.

At the ENT’s office, the audiologist had put my son in a sound-proof room and placed large headphones on his ears. These were the same headphones he’s worn many times before…but, the other times he didn’t have a cold.

Never mind that it was Fat Tuesday and my kid arrived at the doctor’s office wearing FIVE beaded necklaces around his neck. He likes to keep me guessing about what will really bother him, so I didn’t see it coming when the pressure from the headphones made him start gagging.

I could see him through a window and I quickly ran into the room and took the headphones off, as he began pulling on the collars of his shirt and undershirt, trying hard to get them away from his neck. I started unbuttoning his oxford to remove it as I explained to the audiologist what was going on.

We then tried putting the headphones on and letting the wires run down his back, thinking it could’ve been those wires touching his chin or neck that bothered him. No go. He gagged again and pulled on his undershirt collar, so I took that off too.

We finally figured out that he was okay doing a test with ear buds instead of the big headphones, but I had to hold all the wires behind his head so they weren’ t touching him in any way.

And in the middle of the hearing test his other sensory issue…his love of bare skin…reared its ugly head.

There I was with my hands full of wires, staring down at my half-naked kid who couldn’t hear a word I said…as I helplessly watched him rub his own nipples.

Follow

Email

It has been a stressful week here at the Casa de Fali. My husband has been working 16 hour days, and both of us are playing a large part in the organization and execution of a charity event which stretches through this upcoming weekend. On top of that our kids are being shipped off, to two different locations on Friday and Saturday too. That alone takes a whole lot of planning. If they aren’t on my list, I’ll likely forget to pack one of them.

But the reason I am exceptionally on edge right now is because of a nightmare of epic proportions. A bad dream full of red-tape, labeled with words like “effective dates”, “claim forms”, and “benefits”. And let me tell you, they don’t put that little skull and crossbones on Rx bottles for nothing.

Now I am not one to complain too much about health insurance. I had two premature babies, and have a son who has had nine surgeries and lots of hospitalizations. My daughter’s bill from her stint in the NICU was $135,000. Not one to be outdone…my son’s combination of services has put him well over that figure.

We will never put into health insurance what we have taken out.

That may not give me any right to complain, but it also puts me in a position where I know a lot of the ins and outs of the industry. And it is one messed up industry.

February has put our family in a sort of insurance limbo, and we are not a group of people who can afford to be in that situation. We have been somewhere between COBRA benefits through my husband’s former employer and having an exception made to our effective date with his new one.

While all this has been up in the air we have continued to need prescriptions. My son desperately needs his reflux medication, he and I both take something for asthma, and my daughter came down with strep throat. In the past two weeks, we have paid our pharmacy nearly $700.00, fully expecting to be reimbursed.

We were, in the sense that yesterday nearly half of that was applied to the deductible on our new plan. But the reflux medicine my son desperately needs? The one that he has to have in order to not throw up every day? The one that costs $388.00 a month? It’s not covered at all.

Not only are we out that money, but now we get to go playing around with G.I. medications until we find something that works comparably well. The cocktail he’s on now took over a year, and a LOT of screaming (by both of us) to come up with…and now we throw that recipe right out the window and start over.

That is why our system is flawed. This kid is six years old and doesn’t deserve to be in pain, or vomit every day when there is something out there that will stop it from happening. His parents shouldn’t have to go bankrupt to provide it for him either.

So if you don’t know where to find me, just look for the mom banging her head against the wall. Though I won’t bang it hard enough that I’ll need to use my health insurance. You can be sure of that.

Follow

Email

The way I look at the world has changed. It’s not because I’m getting older and it’s, for sure, not because I’m getting any wiser. It’s because I am the parent of a child who doesn’t fit the mold.

My son is not typical. He is not autistic, he doesn’t have Downs, there is no disease, disorder, or diagnosis of any kind. On one hand, that’s something for which I am happy. On the other hand, it can sometimes be frustrating.

The geneticists were sure there would be some way to classify him, but after extensive testing they came up with nothing. He is an enigma.

His expressive speech is that of a three year old, yet his teacher says he’s gifted. He is still in need of therapy, but our county agency doesn’t want to pay for it anymore because his I.Q. is too high.

He has a hearing loss, but it’s not something a hearing aid can help. He loves music, but can not sing you a song. He can read a book, but can’t tell you what it was about after he closes the cover. Yet, he can take a computer test on that book the next day and get every question right. So far this school year, he has taken 103 such tests.

His defective heart is stable enough that he can ride roller coasters and play sports, but an anesthesiologist at an outpatient surgery center won’t touch him because he’s a “heart kid”. Something as simple as ear tubes requires a trip to the hospital. A tonsillectomy meant an overnight stay in the ICU.

He’ll be seven in May, and as of Sunday he weighed 37 pounds. He can ride a bike, but can barely reach the pedals.

His is different. He is special. And, you know what? It’s all in how you look at things. My kid’s clock may turn counter-clockwise, but he still knows what time it is.

Follow

Email

Yesterday afternoon, I took my sick son to an urgent care where he was seen by a kind and capable nurse practitioner. She quickly assessed him and wrote a prescription before sending us on our way. I kind of wanted to tell her this story. Kind of…

When our daughter was born ten weeks early via emergency c-section, my husband and I got a crash course in medical terminology. We learned all about NG-tubes, picc lines, desats, brady’s and many more words I hope you boys and girls never need to know.

We spent hours in the intensive care unit each day and picked up invaluable information from the neonatologists and our child’s primary care nurse. For 35 days straight, we sat at our daughter’s isolette reading her chart, working the monitors, and reapplying electrodes. By the end of that journey we felt like medical professionals ourselves.

Our son was born premature a few years later, but because of his heart condition he was immediately transferred to a children’s hospital where they had equipment to better care for him.

It was déjà vu with a twist. We were thrown into a familiar situation, in unfamiliar surroundings. Yet, we figured we were ahead of the game. At the very least, we knew the lingo and could communicate with the staff.

Or, so I thought.

Because I’m sure the nurse practitioner who met my husband upon our son’s admission was quite surprised when she introduced herself, only to have him say, “We’d like a real nurse, not one who’s just practicing.”

Follow

Email