Wednesday, April 30, 2014

Hunger in Suburbia

When I attended Ashley's ESY meeting last week, I learned something interesting.

No, it wasn't that ESY services will look pretty much the same for all students - the I in IEP apparently still doesn't mean anything after the 17 years Ashley has been receiving school services.  No, it's not that ESY services will be shorter this year - I've come to expect that.

What I learned was that 43% of the students in Ashley's school are on the free breakfast and free lunch program.  43%!  That's approaching half the student body.  One of the school staff also shared the fact that many of those 43% have families that often go hungry - even some with two parents who both have a job.  And with summer approaching, the number of children without adequate food will increase dramatically.

How could I not have known that?  And now that I do know, what can I do?

The area which assigns students to Ashley's school is a middle class suburb.  Residents have middle class white collar jobs or middle class blue collar jobs - or so I thought. Most of the houses in the area are older (1960's), brick homes, most with well-kept yards or apartment buildings, most of which rent for $900+ a month.  The area is very diverse racially, ethnically and culturally.  And crime, though there is some, is not violent or frequent. All these things seems to have lulled me into not even thinking that people could be going hungry, especially children.

However, eve with
that profile, children and their families are going hungry.  What can we do?

I know there are food banks and churches that offer meals and food.  But I think this problem needs a more focused and targeted solution.  I believe our neighborhoods and schools should be full of people helping each other.  And that's why I ask "What can we do?"

Seriously, what can we do??

Friday, April 25, 2014

The Other Side of The Door

You may have noticed that I haven’t been posting much recently.  Last week, I used the excuse that it was Spring Break, but this week, I have no such excuse.

I’m not sure exactly why I’m not posting.  Writer’s block?  Nothing important to say?  Too much other stuff going on in my life?  I’ve pondered that question for a couple of weeks now, and I do think I have an answer.

I seem to be facing a new door into my future life.  My children are not young anymore, and as such, I don’t have many school horror stories to share.  Their health has been relatively stable, so there’s not much on that front either.  There will always be stories about disability or accessibility nightmares we face, but I wonder if you may be tired of me sharing those.

What I do know is that the future on the other side of the door is going to look very different from our current life.  I will be facing the challenge of appropriate adult services for my children, and they will be facing something so vastly different than they have ever experienced.  People and friends are likely to be different.  Expectations will be different.  Locations and activities will be different.  And, the thing which frightens me the most – I will need to shore up plans for my children’s care in the event I am unable to continue to provide that.

I’ve overwhelmed with the newness and the unknown.  I’m exhausted from a work schedule which seems to grow more hectic each week.  I’m battling my own health issues as my lupus and rheumatoid arthritis are growing worse and my medication is helping less.

I don’t know that I need a break, but I do know that I need to ‘lighten the load’ a bit.  I need time to bring the future into focus, time to decide how to approach the challenges, time to even understand what most of the challenges will be.

I’m not going to stop blogging altogether, but I am going to slow down a bit.  Maybe when my life feels more together, I can get back to my 5-day-a-week schedule, but for now, I am going to write when I feel moved to do so.  That may be once a week or once every two weeks or maybe even three days in a row.  Hopefully my writing, whatever its schedule may be, will do as it has in the past – help me to center myself, support my children, take comfort in the wisdom of my readers, and assist me with finding the best route through this next phase in my life and my children’s lives.

I have been and always will be so very grateful to you, my dear readers.  I hope you won’t give up on me.  I hope we can stay virtual friends into the future.  I need you, and I hope in some very small way, you need me also.

Here’s to the future – a time of excitement and embracing the differences!

Thursday, April 24, 2014

Monday, April 21, 2014

The Bravest Thing Ever

During Spring Break, we visited one of our favorite places - the Virginia Safari Park.  Located near Natural Bridge, Virginia, The Virginia Safari Park is a magical place where animals such as zebras, deer, antelope, camels and bison come right up to your car for a snack! 

In addition to the drive-thru portion of the park is a small walk-thru area where super turtles, monkees, lazy kangaroos, giraffes, peacocks and budgies greet the public. 

Since Ashley is severely visually impaired, she doesn't always get to see the animals, but the budgie house is a different story!  Fashioned like a gigantic bird house. hundreds of budgies fly around.  They will land on shoulders, fingers and even hats.

As you might imagine, the hubbub in the budgie house could go one of two ways - she could be frightened and over-stimulated, scaring the other visitors as well as the birds - or the way life unfolded during our visit!  For a blind child, this is quite possibly the bravest thing I have ever seen!

Monday, April 14, 2014

Spring Breaking

It's Spring Break for the kids.  It's also time for flower planting, zoo visiting, ice cream eating, napping, and all those other wonderful things we can do when we don't have school and work!

I hope you all have a wonderful Easter, and I will see you on the other side!

Wednesday, April 9, 2014

Special Exposure Wednesday

No, it wasn't a tornado or's my old, rotting shed during its teardown process...otherwise known as "the source for dead rodents to the delight of my two dogs"!

Tuesday, April 8, 2014


I wake up every morning with hands so swollen that they can hardly bend.  They ache, as do my elbows, shoulders, and knees.  Every so often, my hips and feet jump in to enjoy the pain too.  I have rheumatoid arthritis.

I was diagnosed about 10 years ago, and have been through a whole range of treatments – Ibuprofen, prednisone, methotrexate, and several biologics.  The biologics have traditionally been the best, but they usually only work for about two years.  And that’s why right now I am trying yet another, my 4th, biologic.

I began four weeks ago on Orencia.  Unlike the other biologics I have tried that are once a month shots, Orencia is a once a week shot.  Usually when I started on one of the other biologics, I would get relief pretty quickly, but so far on Orencia, I feel worse not better.  I’m not sure what that means, but am really looking forward to my next rheumatology visit in a couple of weeks.

It also seems that Orencia comes with its own unique set of side effects – flushing, back and shoulder pain, and a monster headache that I just can’t seem to shake.  I had no side effects on the other biologics, so I don’t know what makes Orencia so different.

I would love to know if any of you have tried these meds, or have RA (or a similar condition requiring the use of biologics).  What’s worked for you, and what hasn’t.  I’m not young, but I’m also not old enough to feel as bad as I am right now…

Monday, April 7, 2014

Competitor - Winner!

Ronnie competed in the Mid-Atlantic wheelchair games this weekend.  He even came in 1st in his age group in the 100, 200, 400 and 800 meter races!  Way to go, Ronnie!

Friday, April 4, 2014

My Day Begins...

It's 4am.

Time to get up. Get myself showered, hair dried, make up on.

Feed the dogs - one at a time - outside because they are such pigs

Prepare Ashley's morning meds.

It's 5:30 am

Time to wake up Princess Ashley after corraling the dogs back into the house (which recently has involved wiping their muddy feet with a towel).

Pick up the detritus from her night-time partying.

Help her tend to her personal needs. Administer medications, and help her get dressed in the first outfit of the morning.

Make her bed with her help (?).

It's 6am

Start a load of laundry

Rinse out all the medication syringes.

Assist Ashley with her morning yogurt.  Make her two pieces of toast, cut in triangles, crust removed.

Assist her with eating her toast.

Help her to the living room couch where she will take a morning nap while waiting on the school bus.

It's 6:30am

Put away the laundry done the night before.

Pick out three outfits for Ashley for the next day - two for home in the morning, one to go to school.

Vacuum the mud, leaves, etc. brought into the house the previous day by boys and dogs.

Write any notes needed for school.

Pack Ashley's lunch and backpack for school.

It's 6:45 am

Begin a supplemental tube feeding for Ashley, spill some on her clothes (now you understand why we need two outfits for the morning), clean it up and clean feeding supplies.

Make fruit/veggie smoothies for the boys.  Make breakfast for the boys.  Oh wait, make some breakfast for myself too.

It's 7am

Wake boys up.

Nag Ronnie for being so slow.

Take out trash and recycling.

Pack my bags for work, including shutting down my computer and loading everything in my car.

Figure out what I will wear to work the next day and set it out to be pressed in the evening.

Move laundry to dryer.

It's 7:30am

Wake the princess up from her morning nap, and help her tend to her personal needs.

Locate the objects of her desire to be used while waiting for the bus - some days it's blocks, some days it's starry wires, some days I never figure it out.

Set the living room couch and the rest of the room to a reasonable state of neatness (I hate coming home after work to a messy house!).

Continue to nag Ronnie to move a little faster.

It's 8am

Wait by the front door for the school bus which sometimes come at 8:10, sometimes 8:20, and sometimes 8:30.

Put my darlings on the school bus and head to work.

It's 8:45

Begin (?) my work day

Thursday, April 3, 2014

Spring Has Sprung

And this sums up exactly how I feel!!!

Wednesday, April 2, 2014

Special Exposure Wednesday

My peach tree is coming back to life....

Tuesday, April 1, 2014


I need some help from other parents who tube feed a blenderized diet to their child.

Ashley, though she takes most of her food by mouth, needs some supplemental tube feedings to make sure she is getting enough fluids, fruits and vegetables.  The problem is I don't know which fruits and vegetables to use to make sure she is getting as much nutritional value as possible and as much fiber as possible all the while holding the calories down.

I also don't know if it is better to use fresh fruits and veggies, cook them down, and then blenderize them versus using canned vegetables and fruits.  How much water should I add to the mixtures, and/or do I need to also push water before/after the feeding?  And, are there any fresh vegetables that can be added as-is, e.g. spinach.

I've found some information on sites like Facebook, but most of the information is for children who are exclusively tube fed.  Ashley only receives supplemental feedings.

We are going to meet with a nutritionist (ordered by the endocrinologist at a recent appointment), but the first appointment we could get was not until June.  I just don't want to wait until then.  So, I would love any information you could share.