Posts Filed Under Special Needs

When my son was young, he was very sick, not only because of his congenital heart disease, allergies, and kidney disorder, but with near-constant, chronic, bacterial infections. A bacterial infection is nothing to mess around with, but when you have a heart condition, you need to be extra careful. We faced what seemed like a never-ending battle against these bugs in order to keep his ticker, well, ticking.

He had strep many times. One case was so severe, and antibiotic resistant, that it nearly killed him. Have you ever heard of a mastoid infection? I hadn’t, until my son got one. It’s a bacterial infection in the bone behind the ear, which is not to be confused with adenitis, which made him look like he had swallowed a golf ball. Oh, and there was that UTI that he got before he was even one week old.

More than anything, though, my boy suffered from sinus infections. From October to May, his little head was crammed with crud and mucus so thick that he could barely breathe. We filled prescription after prescription of antibiotics to keep the bacteria from traveling to his heart. He spent, roughly, two out of his first nine years on Penicillin.

During this same time, when we were pumping him full of medicine, we tried natural remedies too. We even had the air quality tested in our house to see if there was mold hiding somewhere. I knew that all of the antibiotics were keeping him alive, but I also knew that they were killing the good bacteria right along with the bad, and I worried that someday they simply wouldn’t work anymore.

Then, on television one day I saw someone talking about neti pots. Something told me that this was what would help him. I had a talk with his pediatrician and she thought it was worth a try, though she suggested a sinus flush instead of a neti pot, something that would force the water up instead of just letting gravity have its way with his nasal passage.

I bought purified water and a sinus rinse kit, positioned my kid over the kitchen sink, and promptly made him vomit. We tried again the next day, and the next, and the day after that, until my son became a nasal irrigation pro! Now he can even tell me which side needs to “go first” in order to clear his sinuses quicker.

I would love to say that he hasn’t had to take any antibiotics since we started this all-natural solution, but I can say that he’s gone from needing medication about three months out of the year, to about two weeks. He rarely has sinus infections anymore, when he used to live with them perpetually.

He’s had three sets of tubes to help with ear infections, he had his tonsils removed to cut down on strep, and I’m happy to say that sinus infections are, mostly, a thing of the past. I’m glad I made him stick with it and keep trying. I’m pretty sure that’s exactly what we parents are supposed to do.

This post is part of BlogHer’s My ‘I’m a Mom’ Moment editorial series, made possible by Seventh Generation.

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The Road Less Travelled

posted by Momo Fali on May 13, 2013

Today started with my 14 year old daughter making herself a peanut butter sandwich to take to school for lunch. As she reached into the cabinet to get a container, she asked her little brother to grab her a bottle of water.

Do you remember in The Sixth Sense when Haley Joel Osmet’s mom walks out of the kitchen, then returns a moment later to find all of the cabinets and drawers open? That’s what it sounded like this morning when my daughter turned back to her sandwich and found a water bottle stuck firmly into the middle of the bread.

My son just turned 11, and he is smart, so you’d think he would know better, but let’s keep in mind that this is the child who has secretly been taking pictures of people’s double-chins with my phone. I go to make a phone call and instead find 64 photos of fat necks; my own included. You don’t even want to see the search history on our iPad.

Sometimes his behavior is downright bizarre, so that’s why it was such a relief when my husband and I sat in a classroom at, what we hope will be, our son’s new school. Though I will admit, before the class started we were concerned the day would be filled with  nothing but chaos.

There was the student with personal space issues (BEEN THERE) and the other one who ran around the room only to stop and pet my husband’s jacket (BEEN THERE, TOO), one child was sleeping, and one child was rolling around in his teacher’s chair. My husband and I looked at each other with that same what are we going to do now look that we’ve given each other many times before.

But, then the class started. Though the behaviors didn’t come to a complete halt, these kids were learning and they were learning stuff that my husband and I were clueless about. No offense to Canadian geography, or anything. I couldn’t believe the difficulty of the work and I couldn’t believe how smart these kids were.

The teacher, who knew exactly what to do to get through to each individual child, had them focused, challenging themselves, taking a quiz without audible groaning, and speaking clearly as they read aloud. It was amazing to watch and I was flat-out honored for the opportunity. I wish everyone could do it. Ignorance is bliss, after all, but knowledge is power.

At one point a student raised her hand and started a sentence to her teacher by saying, “No offense, but maybe you should have…” Yeah, that whole “no-offense” thing? BEEN THERE, TOO. My son used to start most of his sentences with, “I’m sorry to say this, but…”

That’s when my husband and I looked at each other and silently thought, these are our people. And that’s a place where we’ve never really been before.

I can’t wait to see where we go next.photo (4)

Hitting the Road

posted by Momo Fali on May 2, 2013

I once read that kids with PDD-NOS “…don’t understand why things are wrong, that they are wrong, what affect they may have on others, or how their actions can make others feel.” I copied these words down for myself, but I didn’t note the author, so I can’t give credit where credit is due. My husband will probably tell you that I do that a lot. Not the stealing quotes part, but the not giving credit thing. In my defense, washing the dishes once per week does not a kitchen-helper make. I digress.

My 10 year old son has PDD-NOS. This stands for Pervasive Developmental Disorder, Not Otherwise Specified, which can also be called sub-threshold autism, or autism spectrum disorder, or GOOD HEAVENS WHAT IS GOING ON WITH OUR CHILD RIGHT NOW? We’ve called it all of those things at one time or another.

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The fact is, no matter what you call it, it’s a disability. My son’s brain does not function like a typical child’s brain. He does not understand social cues, he has a hard time understanding figurative language, he exhibits repetitive behaviors, and he exhibits repetitive behaviors. See what I did there? He can also become easily frustrated. Though, I could say the same about my 14 year old daughter. *crosses arms* *rolls eyes*

For the past seven years we have been trying to mainstream this very non-mainstream child. We felt that our small school, with a focus on Christian values was just the right place for him to get not only an education, but also the love and support of our church family. But, I don’t think we can try to force this square peg into a round hole any longer.

We can not snap our fingers and have him suddenly be free of his issues. We can neither employ the same techniques used with other kids, nor expect the same results. He is a unique individual and he needs a unique plan and the comfort of being in a place where he, and his intentions, are not misunderstood.

It is not an easy decision to remove your child from the school where he’s spent almost half his life. It’s hard to turn away from the families and teachers who have supported us, but I want him to be in a place where he doesn’t stand out or get called out. For once, I want him to be the typical kid.

So, if you need me, I’ll be doing some research and lots of paperwork. I think we have a move to make.

So Much Good

posted by Momo Fali on April 25, 2013

There is the friend who sent me relaxation in the form of a spa gift card.

There is the parent who offered to get a group of people together to take my son on the field trip he wasn’t allowed to attend, and who also wanted to throw in a Reds game. Sharks, beer, and peanuts? Count me in!

There are my in-laws who provided me much-needed respite. I even took a bubble bath.

There are dozens of people who emailed, texted, hugged and listened. There are so many friends praying and hoping for us right now. Thank you.

I haven’t felt this good about humanity since the infamous meat-wagon, freezer incident of 2009.

Momo's meat wagon

And, maybe that’s what this is all about. Maybe every now and then we need to be reminded that there is more good than bad; that for every awful thing you read or experience, there are hundreds of good deeds going unnoticed or unmentioned.

If I’m going to share the bad, then you’ll have to bear with me as I share the good, too. That spa gift card, though? I’m keeping that all to myself.