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Botox and a busy body

‎"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family." 
Author Unknown, found on Cerebral Palsy Family


Nick's cerebral palsy, specifically his left-sided hemiplegia, has made it's annual summer appearance in the form of a rolled foot. The foot is a combination of factors: he isn't wearing his orthotic as much because he's in and out of the pool, he isn't on his ADHD meds because it's summer, he is nonstop from sun up to sun down and he's learning new vocabulary and concepts. Nick's brain always compensates when he's developing new skills and those new skills require more mental direction, so the foot starts to roll.


The past few summers we did serial casting to encourage the ankle to straighten. Last summer, he ended up with a cracked metatarsal bone. He doesn't care if his foot isn't flat, there is fun to be had in the backyard and he will propel himself at top speed toward it.


This summer we are trying botox injections to relax the spastic muscles in hopes of avoiding the serial casting and broken bones. Nick's physician specializes in pediatric rehabilitation spasticity management and we feel he's in good hands, but I did read the risks list and found fear creeping into the decision.


The handout from the doctor includes a statement from the Federal Drug Administration (FDA) stating a possible link between botulinum toxin injections and 4 deaths in children who had received botox. Those that died were males (CHECK), at least 2 had seizures (CHECK), at least 2 were immobile, at least 2 had gastronomy tubes, at least 2 had cerebral palsy (CHECK), one had spina bifida, aspiration pneumonia was the final diagnosis in all the children.


According to the doctor's handout and my own research, botulinum toxin can spread to parts of the body that were not injected. This can cause unintended muscle relaxation and, unfortunately, death in isolated cases. When used correctly, Botox can block the ability of nerves to release chemical messengers that signal muscle tissue to contract. By blocking these messengers, muscles relax and can be stretched at home and by a physical therapist to stimulate normal growth and increases in range of motion.


Working my way through the "does your child have" list brought slight alarm.

1. Seizures (his are myoclonic in nature and are currently controlled)
2. Problems with swallowing 
1. Drools a lot (BIG CHECK if he's concentrating. We've all learned the rule of telling Nick NOT to put his head on your shoulder if you'd like your shirt to stay dry)
2. Can't chew (Does "won't chew" fall into this category?!?!?)
3. Coughs with eating or drinking (Absolutely when the TV is on and he forgets he has food in his mouth and goes to speak, there's quite the coughing and gagging)
4. Needs a gastronomy tube (I do hope those with children who have g-tubes forgive me, but there are days when I'd beg for a g-tube. Getting Nick to eat is not for the weak and it is so painful to put him on a scale and realize he's gained only 6 lbs in the 5.5 years he's been a part of our family.)
3. Problems with moving around (Are you asking ME or HIM? He certainly doesn't think so!)
4. History of aspiration pneumonia (SEMI CHECK)

The SEMI CHECK is because I'm not sure if the pneumonia was viral or from aspiration. At the time, he was a chipmunk champion - he'd hold pockets of food in his cheek for H-O-U-R-S. When told to swallow, he'd scream (What? Nick scream? Never!) like a dying penguin and choke on what had been forced down the windpipe by the blast of screaming air. Nick became extremely ill and the doctor wanted to admit him to the hospital. My husband was in California, I was single parenting 5 children, so I pleaded with the doctor to let me treat him at home with daily visits to her office. A few days later, Hurricane Ike demanded we evacuate before destroying half of our home we'd occupied for 2 months. 


Cue the choir with something dramatic like Amazing Grace.


After discussing Nick's risks, the doctor concluded his are low. She will use a relatively low dose and a restricted number of injection sites. I never would have guessed Botox would be a part of my life, especially in this way, but if it can help my busy body avoid further trauma and give him a little stability, we're game.

planning with a pencil and a little Buffett

What's the saying about having children and best laid plans?  I'm sure it says something about increasing your plan diversions for every child you have. Or maybe it says having a special needs child guarantees altering your plans.


There WAS a period in my life where events and activities were written in pen. Now, it's straight pencil.


Take today for example. Plans were changed early and lunch arrived quietly. The quiet turned into screams of pain as Nick stumbled and fell into Michael's sea chest. You know how a single moment precipitates from the perfect ingredients - the right angle, the needed forward motion, the exact sharp corner, the child with cerebral palsy? Well, it was mixed at the necessary temperature with a little creative dress-up (which probably hindered his ability to walk) and a long, hard-to-pass-by-without-looking mirror. 


The result? A speedy visit to the pediatrician for stitches. After we changed him into real clothes.... 


I heard the scream, knew there would be blood involved. Nick has this discrete "I see red" pitch to his scream. I hastened my sandwich-making skill for the other kids and grabbed the phone. Yes, the pediatrician is on my "favorites" contact list. We're practically BFF's with the amount of calls I make for emergencies, well checks, general questions, referrals and med refills. 


We learned many years ago one of the important aspects to surviving life with a medically challenged kid - have a great support team of professionals. When we found the home we're in, a selling point was the close proximity to the pediatrician who does casting and stitching in-house. We knew it would be vital.


Nick's medical team knows him well. Fortunately, not so much for mishaps and accidents, but more for maintenance. I don't have to list out the lengthy history, explain anything (like his extreme low weight, why he's not responding to the questions, etc). I would even say he's a well-liked little patient there.


The decision was made to stitch his forehead gash closed and we all crossed our fingers he wouldn't require sedation. He didn't. The 5 of us that held him down and did the lidocaine injections just have a little less hearing...


I used a time tested music therapy strategy and broke out the big guns - Jimmy Buffett. Nick immediately calmed. No way he was going to let his screams drown out his Buffett. When Margaritaville came on, he sang the chorus:

Wasted away again in Margaritaville,
Searchin' for my lost shaker of salt.
Some people claim that there's a woman to blame

It was hard NOT to laugh. Poor guy. He sang his way through a few more songs before he was allowed to be free and we were back home in less than an hour.

I'm curious to see what tomorrow brings.

struggles with unattended children

The sign in the fast food play place reads: Children must be with an adult in the playland at all times. If children are left unattended the police will be called.

But what happens if the children weren't left in the playland unattended? What if they arrived unattended?

Matt and Jess were with me yesterday while we waited for Nick, who was enduring his weekly 3 hours of private PT, OT and speech. As I was waiting to order my coffee, three young girls, maybe 9 to 11 years of age, came in from a side entrance. Immediately I could tell they were street-smart, aware of their surroundings and they had obviously just woken up.

One had no shoes. Their clothes were dirty and either too small or too large. Hair was knotty, unbrushed probably for days. I smiled. They accepted my smile, but the response was split-second, cautious and only courteous.

I noticed they paid for their order with a gift card, not a credit card or cash. The middle child, who had gorgeous blue eyes, was in charge. She knew how much money was left on the card and informed the other two what they would be eating. I also noticed they were savvy enough to ask for plastic cups for water to avoid paying for a drink.

After they ate their breakfast, they played a game of hide-and-go-seek in the playland. I gave a few laughs and attention, but not overtly. I wanted to ask, "Where is your parent? Your guardian? Your babysitter?" But I knew the answer.

Jess came over to get her drink and we shared a giggle at Matt's antics from high above us in a bubble. The middle child stared at Jess, shook her head and then sneered. It was very clear to her I wasn't Jessi's biological mother and I wonder if she was jealous. Maybe she didn't care for Jessi's dress. I'm not sure.

When Matt approached their group, they didn't give a second glance at his CI's as so often happens when we're in public. Whatever. In their world some random kid with things attached to his head doesn't register. I imagine that's because their eyes have seen much. Much more horrible and devastating than my eyes.

They began to quarrel with one another. The middle child dominated with the "I'm not playing your game anymore" strategy of forever not being "it". She needed to win at something and was clearly proficient in rewriting the rules, especially the rules of her life. To hear their jabs at one another was painful.

If it had been my children, I would have offered pen and paper and suggested the game rules be written down to avoid arguments. Sadly, I couldn't muster the courage to share this idea with the girls. It was as if they were wild, mysterious creatures I didn't want to spook. Can you see it though? A stranger offering a "Better Homes and Gardens" approach to their predicament? "Really, lady?"

I did offer my observations on how comedic and crafty I thought the youngest was in tagging her sister (or friend, not sure). A slight smile, quickly replaced with a stoic expression, was my reward. I say MY reward because THEY weren't looking for one. They were just trying to be children.

With all of the media coverage of she-who-will-not-be-named, I've seen many in our society become outraged with what I perceive as energy lacking in real purpose or endurance. So, I challenged myself with my own reaction to make a difference in the world. As I pondered how to complete such a challenge in these girls' lives, I realized my own children in front of me. My children, adopted from foster care, who could have been these 3 girls with no adult supervision, no shoes.

Instead, they are happy, carefree children who think their world has been turned upside down when I turn off the TV or make them leave the YMCA before the hour is up. Their early lives were filled with trauma and abuse and the need for strong survival skills. Thankfully, they have no memory of those years.

As I struggle with how I can help these unattended children in a fast food playland, I realize it's time to leave. Calling Matt over and asking him to put his shoes on spins my struggling wheel to a different wedge. It's no longer pointing to "help strange children, " but has stopped on "help your own children."

As we exit the building, the girls are filling their pockets and hands with creamers.

What would you do if unattended children arrived in your life?

what are we handing down?

It's surreal how a soft-spoken "Mom, can you come here?" from your teenager at the front door can elicit the evolutionary fight or flight response.


"What?" I demand. Translation: "Are you OK? Is the car OK? Is anyone bleeding? Is anyone dead?"


"Just come here, please."


As I follow him out the door, I find myself muttering under my breath, just loud enough for my friend to hear, "I can't take anything big. I can't take anything big."


Truth is, I could. I knew no matter what awaited me, I could take it. 


The moment had nothing really to do with the reality: a stalled car in the street that needed to be pushed up the driveway. Material items can be fixed or replaced. This moment was a prime teaching opportunity, a chance to show my children (3 of whom were involved with the car) that when faced with a predicament, you literally and figuratively keep walking and face it. 


I was giving my children what I had - the gift of effective coping skills. Quiet, reflective, calm cope.


I have other less desirable coping strategies, of course. My favorite (*insert sarcasm*) is one I've deemed Monster Mommy. It isn't attractive and no one cares for it, but it can propel my family into action faster than calm cope. It doesn't need to come out daily, just often enough that they don't forget I am capable of unleashing Monster Mommy. 


Ultimately, though, Monster Mommy only teaches chaos and uncontrolled feelings that are randomly spewed. There is nothing positive or constructive with it's use.


I need to teach my children effective ways to live their lives. Following Brené Brown's Imperfect Parenting Blog suggestion to identify things I'm handing down to my children, I offer the following current list:

• calm coping abilities
• less blame and more acceptance of facts
• ability to show care and compassion
• required basics for a strong marital foundation
• importance of knowing WHO you are
• unapologetic expression of self

It took several people to push the thankfully small car up to it's parking spot. Allen was able to have Michael talk him through solutions on the phone that evening and the teen was back in business the next morning. Allen had a few flares of frustrations, who wouldn't? But he practiced his calm, quiet, reflective coping skills and ended the day knowing he can take no matter what awaits him, as can I.

being watched while being late

I'm always late. Ask any friend who sits alone at our meeting place for an extra ten minutes. Ask any dentist office, any doctor's office, any rehab therapist's office..... any Girl Scout leader...

Sometimes I offer an explanation. Other times, I shrug my shoulders and plaster a clueless expression on my face. I'm not clueless, though, so my acting skills have needed practice. "Am I late? Huh. Isn't that something?"

I've learned that being late can quickly become habit for certain events. Like Jessi's Girl Scout meetings. I don't remember arriving on time ONCE. And I never offered a reason. This activity was for Jess and Jess alone. It wasn't for Allen and Emma's little sister. It wasn't for Matt and Nick's big sister. Just Jess, so I didn't even take the other kids with me for drop off and picking up. They didn't know our back story because I didn't want the connection. I wanted them to see Jess for just herself.

I think, however, what they saw was some mom who couldn't get her act together.


I joked with friends that I must look like some crackhead mom who barely pulled herself off the couch to run her kid to meetings and then had to put down the booze when it was time to pick up her kid. True story: I was even late to the end-of-the-year ceremony! I vaguely remembered RSVP'ing for the day and time.....


Here's the thing: I have 5 children who all have schedules. My dry erase board in the kitchen is color-coded to help me stay on top of it all. Allen and Emma are very good at following me around the house about 15 minutes before we're due to leave saying, "Mom! It's time to go! Mom! We need to leave!" Jessi doesn't do this reminding act yet, but soon will be. Up until now, she's relied solely on me telling her when she needed to get ready, but those are lessons on managing time, being organized and being aware of what's going on around you that have been missed with Jess. We are working on these important lessons this summer, but kids learn from what WE do.....

My reasons for lateness on any given day can vary, but Nick is somehow involved usually. The child is demanding from the time his heels strike the wood floor above my head. He clomps down the stairs and sidles up to his breakfast stool. With his location goal met, he begins Act II: eating as slowly as possible in the hopes mom will leave the room and he can escape. He's always busted. Always, but he tries every single day....

For the most part, the morning routine stays the same. Yet, every day he tries to see if there's a loophole, like some fine print clause you forgot to read on your TV warranty. "Maybe, just maybe," I'd like to believe he ponders, "today will be the day I am not watched like a hawk. Maybe today I can play the guitar for an hour BEFORE pooping on the potty and brushing my teeth. Maybe TODAY IS THE DAY!"

Insert evil laugh or hopeful child squeal, whichever suits your personality better.

So, maybe, in some way, he gets the optimistic attitude from ME. Each day I start with hopefully attainable goals. Simple goals, "Get out the door on time", not like "Solve world peace" or anything.

Maybe today I won't be met with stubbornness, resistance, tenacity and shiny things (oh, look at that laundry I can start....). Maybe today I can get out the door on time. Maybe today I will be the perfect role model for my kids. Maybe TODAY IS THE DAY!

Follow me as I begin my 365 day self portrait project on http://careyannephotography.com/365-self-portrait-project