Your Order Please?

Being the parent of a child with special needs prepares us for many 'real (paying)' jobs, if only we could convince an employer and if only some of those parents had time for a 'real (paying)' job.

We have so many skills that would easily transfer to the working world. We:

• have a ton of medical knowledge


• know how to negotiate and get our points across


• know how to sell an idea and make others think it was their idea


• know how to make something out of nothing or very little - crafts, meals, educational tools, etc.


• can survive on very little sleep. Hospital interns have nothing on us in that regard.


• know how to find resources from the most unlikely of places


• understand legal systems and how to work within a government bureaucracy


• are persistent and never give up


• are loyal and caring and strong


• show up for work regardless of the weather or our state of wellness


• etc. I'm sure you could add many more things to this list (and please do)

But my current favorite skill which I know I could easily turn into a real (paying) job is supply clerk.

I maintain a complicated inventory of supplies - catheters, G-tubes, syringes, depends, and medicine out the ying-yang - prescription and over the counter. I always know when it is time to reorder items, and of course they all have their own reorder schedule even though I try very hard to get things synced up. I dispense items as needed (which is constantly), and share/trade items as appropriate. I have a stockpile of wipes, tissues, laundry detergent, 4 types of shampoo, conditioner, body wash, soap, toilet tissue (we seem to use a ton of this), and all the special foods/drinks that my children need. I schedule reordering (trips to the store) each week so no one goes without, and my friends often ask to borrow something because they know I am such a good supply clerk!

I would estimate at least 45 minutes EACH DAY is spent opening delivery boxes, checking supplies, replenishing supplies, recycling and taking out trash.

What about you? How long do your supply clerk duties take every day? And if you have multiple children with special needs, did you see your workload grow exponentially with each added child? I did!

Is That Locust I Hear?

So, did you get to experience the great shake, rattle and roll this week? Just 35 miles from my home, a rare and unexpected earthquake struck. It was a 5.9 on the Richter Scale, and I realize that to folks on the West Coast that is no big deal. But to us here on the East Coast, it was like one of the biggest deals ever.

I was at work when the rumbling started. Never having experienced an earthquake, my co-workers and I were a little stunned at first, wondering just what was going on. And silly me, my first response was to reach up and keep my computer monitor from dancing off the edge of my desk. Then about 200 of the 400 workers in my building ran outside.

Who knew running outside was not the thing to do???

Who knew that standing on the top of an underground parking deck was not the thing to do??

Who knew that cell phone service would more than likely be disrupted?

I felt like I did on 9/11, all I wanted was to hear my children’s voices and know they were ok. But I couldn’t because no calls were going through. It is a horrible, horrible feeling to be in the middle of something major and not be able to know how my children are. I just wanted to go back into my office building so I could try calling on the land line, but the Capitol Police Officer stationed at the door refused to let us back in.

Finally, after about 45 minutes, we were told we could re-enter the building. I went straight to the phone, called home, and got the news that everyone, although a little frightened, was ok. Ashley even thought it was fun and spent the rest of the evening bouncing on her chair to simulate the shaking!

So, we’ve had the wildfire burning in the Great Dismal Swamp causing all of us respiratory problems. We’ve dealt with an earthquake, and we are battening the hatches for Hurricane Irene which is headed our way. I really expect to see locust next…..

This and That

I so despise sitting in a hospital surgical waiting room. Worry hangs in the air like smoke from a camp fire on a cold, windless Winter night. No one smiles, but there is a lot of finger drumming, foot tapping, leg shaking, and wary eye darting. Everyone waits for the call that will make their heart breath a deep sigh of relief.

Ashley wasn't having surgery last Friday, but she was under anesthesia for an MRI of her three brain tumors. Anesthesia and kids with significant special needs, including breathing issues, do not a good mix make.

While I watched the hospital pastor approach one of the most anxious families, I knew from experience that the news wasn't going to be good. I've been there, and I just wanted to scream at the priest and tell him to go away, all the while wanting him to just pray as hard as he ever had in his life.

Today, my call came and it was good news. Ashley was in recovery and I could come hold her while she woke. The cloud of worry over my head dissolved as if it had been rained upon...

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Ronnie absolutely refuses to practice walking with his braces and crutches. About a year ago, he said he wanted to learn to walk. Although he didn't like to slow down his life to go to physical therapy, he was cooperative when he got there. He worked very hard, and was able to take a few difficult steps.

But now he has decided he does not want to walk.

I think it is because the learning is difficult, and even the result, should he learn to walk, would be more difficult than just wheeling himself around in a chair.

So, should I force him to keep going to therapy, knowing all the while he won't practice? Or should we stop? It could be viewed that he has accepted himself as a wheelchair user and he is comfortable with that versus someone who has to work very hard just to be a walker like most of the world.

I'm going to speak to the therapist, but I am leaning towards supporting his acceptance as a wheelchair user.

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Ashley always has been a picky eater. Actually, picky is too mild a word. She was fed through a G-tube for many years, but then became a proud graduate of the Children's Hospital Feeding Program. What that meant is that she would tolerate soft foods in her mouth. Her diet was made up of mac and cheese, mashed potatoes, pudding, applesauce, chicken nuggets, and Le Suer baby peas (HAD to be Le Suer).

Through the years, I have tried introducing new foods, and ever so slowly she has added to her menu plan. She now will eat raw spinach, scrambled eggs, chicken salad, tuna salad, and cupcakes. But she still has a long way to go.

For some unknown reason, there is one place she will always try new foods.

The kids and I often go to a restaurant named Positive Vibe Cafe. The Cafe was born from a marvelous idea (read it here), and the food is spectacular. Earlier this summer, she tried key lime pie there. And this past Saturday, Chip convinced her to try fried calamari. After placing a ring of squid on each finger, she then proceeded to gobble them down (the squid, not her fingers). The waitress was so excited that she asked the chef to make a few more for her!!

I wonder if the owner would rent out a room for us to live in??

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I found the storm trooper helmet hidden behind the toilet. Ronnie had been in the bathtub, so I wasn't surprised. But I couldn't find the storm trooper anywhere. I asked Ronnie after he had finished his bath and was in his room, and he just shrugged. But it was a slightly guilty shrug, and I soon found out why.

The storm trooper has decided to go for a ride down our toilet.

For the record, storm trooper do much better in space than in the sewer system...

Galvanized

Here is the culprit to my water damage problem - a very disintegrating old galvanized pipe.



It wasn't the dishwasher connection as originally thought. Heck, that would have been easier to fix, so of course it wasn't going to be that.

So, after new floor joists, new studs, all new plumbing - no water access for three days - and a few kitchen cabinets taken apart - all should be well by Friday. And by Friday, I should be able to use my fancy new dishwasher.

Living in a 61 year old house certainly has its perks, doesn't it. Just for the record, Universe, I could use a break now.

Welcome To My World - The Evening

4:30 PM Arrive home from office

4:45 PM If it’s Tuesday, get Ronnie, his braces, his crutches and his chair in car to head to physical therapy. If it’s Thursday, get Ronnie, his orthotics, his chair and his basketball jersey in the car to head to wheelchair basketball practice. If it’s not Tuesday or Thursday, sit at table while Ashley eats dinner.

5:00 PM Change clothes, pick out next day’s outfit, while Ashley is getting her shower.

5:15 PM Prepare Ashley’s medications and get her nighttime ‘things’ ready.

5:30 PM Go through nighttime routine with Ashley, including hair drying, lotion applying and arguing over which pajamas to wear that night.

5:45 PM Tuck Ashley in to bed

5:47 PM Begin making dinner for the rest of the family. While dinner is cooking, make sure backpacks are ready for the next day and deal with any school forms and mail. Check phone message and return calls.

6:15 PM Eat dinner

6:45 PM Clean up dinner dishes, start dishwasher, start a load of laundry

7:00 PM Iron work clothes for the next day, plug in cell phones, pack computer bag

7:30 PM Make lunches for everyone for the next day

7:45 PM Check work email and handle anything that can’t wait. Spend a few minutes reading blogs and Facebook.


8:00 PM Move laundry to dryer, start another load of laundry, straighten house

8:15 PM Begin watching an 8:00 PM television show while relaxing on the couch (thank goodness for DVR’s which allow me to record and watch a show on delay).

8:30 PM Unload dishwasher, set out breakfast dishes for the next day, feed cat

9:00 PM Fold laundry from dryer, move next load from washer to dryer, tell boys goodnight, administer kisses and I love yous, turn out lights, turn on alarm system


9:15 PM Get myself ready for bed, check work email one more time, watch some mindless TV show or read

10:00 PM Turn out lights and go to sleep

12:30 AM Get up the first time to tell Ashley to get back in bed and stop pulling clothes out of her closet

3:00 AM Get up the second time to tell Ashley to get back in bed and stop slamming her door

4:30 AM See yesterday’s post...

Welcome To My World - The Morning

4:30 AM Wake up to the soft sound of music on my alarm clock. Make my bed.

4:35 AM Take a shower and wash my hair

4:50 AM Dry hair, put on makeup

5:15 AM Get dressed in office attire

5:20 AM Pack lunches for all the kids, feed the cat, feed the fish, start a load of laundry

5:30 AM Get backpacks ready and place near the door, set out youngest son’s braces

5:45 AM Prepare Ashley’s medicine, wake her up, pick up the room she has trashed overnight

6:00 AM Help Ashley get dressed, prepare her breakfast, feed her

6:15 AM Guide Ashley to the couch for a quick nap before the school bus arrives

6:20 AM Eat a bowl of cereal, move laundry from washer to dryer

6:30 AM Fold the laundry that was done the previous night, put it away, pack my computer bag

6:45 AM Wake up oldest son and steer him towards the shower

6:50 AM Pack my lunch, load computer, lunch and purse into car

7:00 AM Wake up other two sons, prepare their breakfast and have it waiting at the table for them

7:10 AM Sit down for 5 minutes and watch the Today Show

7:15 AM Wake Ashley from her nap, steer her towards the restroom

7:20 AM Help Ashley comb her hair, plop her in front of Sponge Bob for a few moments

7:25 AM Nag two youngest son’s to get their butts in gear

7:35 AM Make sure everyone can find hats, gloves, coats, signed school forms, etc.

7:40 AM Watch 5 minutes of Sponge Bob with Ashley

7:45 AM Lock up house and move everyone to the end of the driveway to meet the bus

7:52 AM Get everyone and all their ‘stuff’ on the bus, kiss, kiss, love you, bye

7:55 AM Get in car and drive downtown

8:30 AM Begin work at my (paying) job (note - I've already been up for four hours)