Tuesday, August 31, 2010

Reclaiming Our Space

Since Ronnie came home from the hospital, we have had CNAs (Certified Nursing Assistants) helping with his care. When he first came home, that care was all consuming – bathing, toileting, dressing, wound care, etc – and it was so nice to have an extra pair of hands to help me with that. I am very thankful that Ronnie’s social worker and her agency realized that I needed the help and were very quick to provide it. But now I’m glad those services are drawing to a close.

Ronnie can take care of almost all his needs now. His surgery wounds are healed. He doesn’t need help with lifting or transferring. He can take a shower all by himself. He dresses himself. In short, he is back to pre-surgery form. So, the CNAs are no longer needed, and for that I am glad.

I’m sure like for many people in the world of personal assistance, the pay isn’t good for the CNA. That means that usually the ‘cream of the crop’ folks are not drawn to that career choice. We had two CNAs that seemed interested in doing a good job, but we had several more who were not good at all. Even the ones that were passably good were often late, needed to leave early, or had some other drama in their lives that ended up having an impact on Ronnie and our family.

And I was just really uncomfortable with a string of strangers in my house.

I don’t know how the families do it that need full-time nursing care for their children. Even around the clock care. How do they adjust to having people around while they sleep and otherwise go about their daily routine? And that daily routine is exactly what was disrupted for me.

I need my routine. My children need their routine. And no matter how good the CNA or nurse might be, routines have to change to accommodate them.

We only have one more day – today – with a CNA, and I am so looking forward to having my life back.

Does any of this make sense?

Monday, August 30, 2010

A Baseball Wish

I think I may have mentioned before that Ronnie has been approved for a wish by the Make A Wish Foundation. We talked and met with Make a Wish prior to his surgery, but everything was put on hold until after the surgery and until the doctor said it would be ok to grant the wish. Well, that has happened!

Now we just need to work out the details and make plans. Ronnie's wish is to meet Adam Dunn, the first baseman for the Washington Nationals baseball team. The Nationals is his favorite team, and he gets so excited every time he sees Adam Dunn on TV. When we took our weekend trip to Baltimore earlier this summer and saw the Baltimore Orioles play the Nationals, we came home with dozens of pictures - almost all of them of Adam Dunn!

I really hope that the Nationals will make Ronnie feel welcome, and that Mr. Dunn especially will understand what a positive experience this will be for Ronnie. I'm pretty confident this will all happen, but even more so after viewing this video that Lucy from Life In Forsyth:

Local Youth Hit The Field With Washington Nationals.

Friday, August 27, 2010

Two Down, One To Go

When Ronnie had surgery a month ago, he came home with three different catheters coming from his body. Two were designed to keep his bladder from filling because he had just had a bladder augmentation procedure. The other was from a Malone procedure, a re-routing of a part of his bowel to make life simpler for him.

The first catheter to go was one from his bladder. But the second one had to stay in another 2 weeks. I'll spare you the details of why he and I both HATED that last bladder catheter because I don't want to cause you to lose your breakfast, lunch or dinner.

Today, though, we celebrated! The second catheter from his bladder was removed!! After an imaging study to make sure there were no leaks in his bladder, the doctor yanked the catheter out - Ronnie yelped - and then smiled!

Even though we now have to collect data on the volumes removed from his bladder, it is WONDERFUL to not have that second catheter. He can now actually start wearing his own pants and not have to continue to borrow the large size from his brother.

In another month, the very small catheter still in place because of the Malone procedure should be removed and replaced with a Chait Trapdoor - something very similar to a G-tube Mickey button.

My goal was to have Ronnie all recovered in time for school, and I think we just may make that!!

Way to go Brave Boy!!

Thursday, August 26, 2010

Which Color This Time?

We’ve got just a week and a half until school starts for everyone – well, everyone but Chip. He goes back to college as a sophomore tomorrow!

Most of the back-to-school shopping is complete – new pants for Ronnie, new shoes for Jessica, Chip and Corey, lots of wipes, tissues, Clorox wipes, hand sanitizer, Ziploc bags, etc. etc. that are on all the school lists. But wait! Ashley hasn’t gotten her annual pair of back-to-school Converse high-tops! How could I forget that??

I probably forgot because she already has 10 pair of Converse!! But that doesn’t really matter, does it, my sweet girl? I understand completely, said the woman who has 4 pairs of black flats.

Mark your calendar, dear Ashley – it’s shoe shopping time this weekend!

Wednesday, August 25, 2010

Special Exposure Wednesday

Ronnie had a doctor's appointment last week, and as is often the case, the office forgot to engage an interpreter for him. We had to resort to using the DeafTalk machine. Similar to a video phone, an interpreter is contacted from a remote location. The interpreter can hear everyone in the room and can see the person at whom the camera is pointed - the Deaf person. The Deaf person can see the interpreter on the computer screen. Sounds pretty good, doesn't it.

Well, for many reasons, Ronnie does not like DeafTalk at all. But, yet another interesting turn of events happened at the doctor's office. Ronnie was on a standard size exam table. The DeafTalk machine was positioned in front of him. Only problem - the interpreter could only see Ronnie's knees.

So, here is the solution arrived at by the hospital staff - set the DeafTalk machine on a small stool and have Chip hold it during the entire appointment. And they wonder why Ronnie prefers an in-person interpreter....

Here's a closer look at how the DeafTalk is precariously balanced on the stool...

Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, August 24, 2010

A Modicum of Sense

Well, at least the Academy of Arts and Sciences haven't completely lost their minds. I was appalled when I first heard that the TV show, Family Guy, got an Emmy nod for their song, 'Down Syndrome Girl.'

Haven't heard it? Well, here is a sampling of the lyrics:

And though her pretty face may seem a special person's wettest dream. [...]

You must impress that ultra-boomin', all consumin', poorly-groomin', Down Syndrome girl. [...]

You want to take that little whore and spin her on the dancing floor. [...]

My boy between the two of us we'll get her on the shorty bus and then you're gonna take it on a whirl.

Now go impress that super-thrilling, wish-fulfilling, YooHoo-spilling, ultra-swinging, boner-bringing, gayly-singing, dingalinging, stupefying, fortifying, as of Monday shoe lace-tying, stimulating, titillating, kitty-cat impersonating, mega-rocking, pillow talking, just a little crooked walking, poorly-pouting, poopie-sprouting, for some reason always shouting, fascinating, captivating, happiness and joy-creating, Down Syndrome girl.

According to Newsbusters.com, "The Feb. 14 Family Guy episode, which the song appeared in, sparked outrage after its premiere - most notably from former Alaska Gov. Sarah Palin who has a son with Down syndrome.

At one point in the episode, the character with Down syndrome said that her mom was "the former governor of Alaska," a clear reference to Palin and her son, Trig.

Palin quickly criticized the show for the distasteful jab at her son. "[W]hy make it tougher on the special needs community? When is enough enough? When are we going to be willing to say some things just aren't really funny?" she said on Feb. 16."

Mrs. Palin and I almost never agree on anything, but on this item we most certainly do. The song was not funny - it was offensive. And even though, as New York magazine noted, the Outstanding Original Music and Lyrics award, the category in which this song was nominated, has been "gaining a reputation as Emmy's quiet nod to First Amendment rights", this time things went too far.

Thank goodness the song did not win the Emmy.

Monday, August 23, 2010

Really, Jennifer

Dear Ms. Aniston,

I really liked the character you played on Friends. And, although I haven't seen many of your movies, you know, the ones where you play pretty much the same Rachel character, I did feel bad for you when things didn't work out with Brad and John and Vince.

Your newest movie looks interesting, especially the concept of women having babies even without being married or in a relationship. In fact, I wouldn't be at all surprised to hear that you have decided to find a sperm donor and become a parent yourself.

However, if you do become a parent, I really, really hope for the sake of your child, that he/she is born without disabilities because I really don't think after your comment on the Regis and Kelly Show that you would be a good parent to such a child.

Just saying,

Ashley's Mom

Friday, August 20, 2010


Yesterday was the last day of ESY (extended school year) services for Ashley. For the last seven weeks, she has gone to school Monday through Thursday from 8am until noon, all in an attempt to keep her skills from regressing. The actual classroom services were largely a waste of time, but that is not what this blog post is about. This post is about school bus services.

Yes, I know, I have written many times in the past about the issues surrounding bus transportation in my school district. Well this post is not going to dwell totally on the negative. Bus services were, for the most part, excellent this summer. They did however start to fall apart this last week of school. And, I have a few suggestions so that doesn’t happen in the future.

The important and very positive thing about bus services this summer was that Ashley had the same bus, the same bus driver, and the same bus aide for six out of the seven weeks. That meant she could build a relationship with them, and she knew what to expect each day. She saw the same children on the bus each day, and the arrival and return times were very consistent. The driver and the aide took the time to talk to me and to get to know Ashley, and most mornings, that meant she skipped happily off to board the bus.

During this last week of school, the regular driver and aide were scheduled to attend training. That meant new staff – people who knew nothing about Ashley, people who were changing things up. And, as most parents of children with disabilities know, changing things up can be a minefield – and it was for Ashley.

So, rather than going on and on with my complaints, today I have decided to offer some suggestions!

First, I acknowledge that my school district really does want to provide acceptable transportation services. I also acknowledge that bus staff have lives too and must sometimes be out sick, out for training and other such stuff. What I would like my school district to acknowledge is that changes, even minor ones, can be very disruptive for many students with disabilities.

For example, some students like to sit in exactly the same bus seat each day. Making that student sit in a different seat could set a day of distress into motion.

Some students like to sit alone and some like to sit with a friend, often a particular friend. Deny either that accommodation, and you may get cursed, hit, bitten, etc.

Some students like music on the bus – some don’t, but all usually want things to stay the same – music or not. Play music when it hasn’t been played before, or all of a sudden stop playing the music – or God forbid, change the station, and you could have several meltdowns.

Each student on the bus has special needs, and some of those needs involve seizures or other such medical conditions. New bus staff needs to know that, or a seizure may be viewed as negative behavior. Some students may be deaf, and if the bus staff keeps talking to them and gets no response, patience will be tested. Some students may have a comfort item that goes everywhere with them. If there is no safety reason for denying that comfort item on the bus, the staff needs to know not to touch it.

These are just a few examples, things which I think could be resolved purely with communication. How hard would it be to have a diagram of the bus seats posted on each bus? Use an erasable marker to show which seat each student prefers to sit in.

Have a one page/one paragraph summary of each student’s likes and dislikes. I’m sure most parents would be happy to provide this. Keep that information in the bus, and require substitutes to read it before leaving the bus garage.

Just a few short minutes in the morning and afternoon for a substitute driver or aide to review information could make for happier students, happier parents, and an easier job for bus staff and teachers.

Do you have any other suggestions for improving school transportation and keeping everyone informed?

Thursday, August 19, 2010

A New Ride

Ronnie's recovery from his surgery almost 4 weeks ago is progressing nicely. Despite some setbacks with faulty catheters, he is almost completely back to his happy self.

Today we visited the spina bifida clinic at our Children's Hospital, and everyone was remarking about how great he looked. He loved all the attention, but even that paled in comparison to the moment his new wheelchair was pushed into the room!

The wheelchair Ronnie brought with him when he joined our family last March was in pretty sad shape. Parts of it were refurbished just before he moved in, but still it was too small for him, the brakes needed adjusting weekly, and worst of all (at least to Ronnie), it didn't 'go fast'.

But all that has now been solved! Thanks to a special physical therapist, a great wheelchair technician, and most especially, a wonderful social worker, Ronnie has a new ride!

It is a sports wheelchair - shiny black, the right size, a seat cushion that is very comfortable, the ability to spin on a dime, and most importantly FAST! It even has an embroidered person in a chair going super fast!

Next stop? Wheelchair basketball team!!

Tuesday, August 17, 2010

Special Exposure Wednesday

We were fortunate after I adopted Ronnie to find a wheelchair accessible van. It's a really big one with a wheelchair lift that comes out of the back of the van. Even if we park in a regular handicapped parking spot, the lift still comes down into the middle of the road, and that's how we have to unload Ronnie and his chair. But then last Saturday, I saw something very interesting.

This is the parking lot at the WalMart near our house. Look closely at the handicapped parking places. One of them seems oriented perpendicular to the rest. That's because it is designed for vans just like ours!!

Thank you, WalMart, for considering the diverse needs of people with disabilities!

Be sure to check out the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!


Ashley has been on our state's debelopmental disabilities Medicaid waiver waiting list for 7 years. Each year, she receives a letter letting her know where she is on the list. This year, she is number 265. Seven years ago, she was in position 345.

I'll let this video explain our frustration and the frustration of hundreds of thousands of other families and individuals with disabilities.

Monday, August 16, 2010

Too Good To Be True

Just last week I wrote about Microsoft's new gaming system that would recognize sign language. Having two deaf children, I was extremely excited about that, and quite impressed that a company like Microsoft was keeping the needs of its customers with disabilities in mind. It sounded almost too good to be true - and apparently it was.

The mention of American Sign Language (ASL) support in Microsoft’s Kinect patent raised hopes that the motion-gaming add on might be useful for more than just interacting with virtual children or swordfighting without swords; unfortunately, Microsoft has confirmed Kinect won’t actually ship with ASL functionality. The reason? Microsoft downgraded Kinect’s video hardware capabilities.

While Kinect will ship with webcams capable of 320 x 240, Microsoft apparently planned the cameras to support over twice that resolution. That would have allowed the system to recognize not just limbs but individual fingers, hence the ASL support.

Unfortunately, in trying to cut costs, hit a $150 street price and still maintain a decent profit margin, Microsoft supposedly opted to use cheaper, less capable cameras, which can only recognize limbs. They also offloaded some of Kinect’s processing from the camera-bar itself to the Xbox 360 console itself. Microsoft hasn’t confirmed this is all true, but if so it suggests the first-gen hardware will never be able to support ASL.

You haev disappointed me, Microsoft, really disappointed me....

Friday, August 13, 2010

Just Wondering

We parents of children with disabilities spend a great deal of time advocating for our children. And, that advocacy often involves some sort of inclusion for our children with their non-disabled peers. We will say that we long for the vision of all children, regardless of ability level, playing together, learning together, just generally being one big happy group. But what about within the world of disabilities – do we advocate for that same level of inclusion? I’m not so sure…

I’ve noticed over the 13 or so years that I have had children receiving special education services in my school district that even within the disability world we tend to segregate.

Children with milder disabilities, even some with invisible disabilities, do not socialize or learn with children who have severe disabilities. Parents of children with Down Syndrome, for example, usually win the battle to have their children educated in the general education classroom. The children move freely among their non-disabled peers. But my children with significant or severe disabilities are kept in separate classrooms, often in separate areas of the school, using separate lunch tables, and with limited or no access to their non-disabled peers. That seems to be ok with those parents of the Down Syndrome children. But it usually is not ok with the parents of the children with severe disabilities.

And then there are those times and events that include children with emotional or behavioral issues. Parents of children with disabilities that don’t have those issues can often be seen drawing their children closer, away from the ‘wilder’ children. Or, parents of children with Deafness will often only facilitate socialization only with other Deaf children, relying on the whole Deaf Community argument for their rationale.

More and more, I hear about ‘Autism’ classrooms. Are we sure that isolating children with Autism will make their adults lives easier and happier? Are we afraid to have children who are blind, or have ADHD, or who have orthopedic issues interact with the child with Autism? I know that I have heard many, many times that “I don’t want my child around that child with Autism. He will learn even more negative behaviors.”

Umm….So is inclusion only good when it suits us – when we think our children with disabilities will learn positive things from others? Are we being a tad hypocritical?

What do you think?

Thursday, August 12, 2010

Kinect Me!

Just when I was about to put my foot down and tell the kids that we did NOT need yet another video game system in our house, Microsoft comes out with a new Xbox console with special features for the Deaf. How can I refuse now?

Based on Kinect, Microsoft's movement tracking technology, games can be played on the console without holding any sort of controller. The player's body directs the game play. It is similar to the Wii, but the Wii does still require holding one or two controllers to direct a game.

But one of the most substantial features is that, not only does the system recognize gameplay movement, it also detects American Sign Language. This will allow fluent users to input letters, words and even entire phrases to be interpreted as readable data.

At first I wasn't sure how this feature could be applied in a real life home situation. But this video, available on the Xbox website, makes it clear. Pay close attention at about the 45 second mark. You will see a boy come into the room and using his voice only, he will pause and start to play a movie. If that boy had been Deaf, he could have directed both the Pause and the Play in sign language.

I would love to see what other things could be done with sign language and this game console. It's not yet available, but I have read that it will be in stores for the 2010 holiday season. If anyone does get one, please let me know what you think.

Wednesday, August 11, 2010

Special Exposure Wednesday

Even though this has been one of the dryest summers on record for my little corner of the country, the herbs in my garden have really flourised. Probably because they are so closely related to weeds - and weeds are the only thing keeping my lawn somewhat green right now.

These are some pictures that my son, Chip took of my garlic chive plant. I love how the blooms look like little garlic cloves as they first start to burst forth. And just for a size reference, the little cloves are about the size of a pencil eraser, and the flower is about the same circumference as a tennis ball.

Beautiful job, Chip!

Tuesday, August 10, 2010

Not Quite Yet

Ronnie had his first follow-up doctor's appointment today with the urologist. We were all really hoping that he might agree to remove two of the three catheters that Ronnie came home from the hospital with. But sad to say, that was not to be today.

Ronnie's urologist is ultra-conservative. But, he's one of the best. So, if he thinks it is best to leave the catheters in a while, I believe it will be for the best.

So, for at least another week or two, Ronnie will have three catheters, and two collection bags attached to him at all times. It really makes transfering from his wheelchair to the couch, bed or bathroom facilities difficult, and those transfers always require assistance. The good news is that by the time school starts in early September, all the 'connections' will be history and Ronnie will once again be one of the gang. The doctor said Ronnie is looking great, and that he's really pleased with Ronnie's progress.

Today was also my first day back at work in two weeks. It felt really strange not to be donning exam gloves, and I may have slipped a few times and asked my co-workers if they needed their catheters flushed :)

Monday, August 9, 2010

Captioning on Demand

Finding closed captioned movies at the theatre is difficult in my area, to say the least. There is only one theatre that shows captioned movies, and the movies are never at the theater until weeks after the opening shows. For example, it took about 4 weeks before Eclipse was available with captioning, and then the show times were not such that we could go.

But Chip, my ever resourceful son, has found a solution - a solution that will allow Ronnie to go to any movie at any theatre and have captioning available.

Chip found an iPhone/iPad/iPod Touch application that will display captioning (or subtitles if one doesn't need the captioning as it is presented to the Deaf). He's checked dozens of movies, including first run ones, and captioning is available!

Here are some screen shots. First you enter the name of the movie you wish to see captions for and perform a search:

Any matches show up and you select the correct movie:

And here is an example of the captions. It's very similar to the technology used in rear-window captioning (which the theatre near us does not offer).

Ronnie can use it in a movie theatre or at home, as pictured here. Chip set his iPad up right next to Ronnie's TV.

How cool is this, and how brilliant is my geeky son??!!!

Thursday, August 5, 2010

Hospital - Day 9 and The Homecoming

Tuesday was Ronnie's 9th day in the hospital. The doctor told us his stay would likely be 10 days, but he sure seemed ready to go home to me. Especially when I saw him consume pancakes, eggs, bacon and cereal for breakfast!

We kept hearing rumors all day that MAYBE he could go home Tuesday afternoon or evening. Being the obsessive/compulsive person that I am, I had come to the hospital that morning with a list - a list of things I felt needed to be accomplished or put in place before we left the hospital. We got very lucky and had a nurse who was just as OCD as me, and she started ticking off the list early in the morning.

Finally the decision was made - we could go home! The meds were ordered - my training was completed - the orders for skilled nursing care were put in - and all the clothes, toys, cards, and ballons were packed up. We looked like a wagon train heading to the car with everything, but none of that mattered - we were headed home!!

Wednesday was Ronnie's first full day at home. It wasn't the easiest day. He was still in some pain, and we all had to work out a new routine - a routine that included three catheters and two urine collection bags. Little things like taking a shower became quite a production.

A nurse stopped by for about 30 minutes to change his dressings, dressing which started to come off about an hour after the nurse left. Then one of the catheter connections came apart. Chip and I kept trying to get it back together, and could for a little while, but it's not a permanent fix. What it is, however, is a huge mess maker. I'm keeping my fingers crossed that today's nurse will be able to secure the connection.

This home care stuff is a whole lot harder than I thought it would be. Harder even then when both Ashley and Jessica had brain surgery. The lifting, the transferring, the toileting, the bathing, the hassles with the catheters - all that equals one very tired Momma. Especially considering that I am still the fulltime caregiver for Ashley this week also ( her regular aide is on vacation this week ).

Thankfully, the wonderful Diane, Ronnie's social worker, has arranged for some in-home nursing help, which hopefully will start this weekend. Some help with the bathing and toileting would be much, much appreciated!!!

Even as difficult as it is, I know that Ronnie's quality of life and health are going to get much better after all this is said and done. That alone is worth everything we are all going through.

Wednesday, August 4, 2010

Special Exposure Wednesday

Let's see just how many things are wrong with this picture.

This was taken in Ronnie's ICU room last week. Ronnie needed a new DVD player - one that could have closed captioning. So, hospital maintenance came to the rescue.

In came the new DVD player - in came a ROLLING, MESH office chair - and on that chair the maintenance man stood. His buddy was NOT even holding the chair steady for him.

At least they were in a hospital....

Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, August 3, 2010

Hospital - Day 8

Yea - yea - yea! The doctors said Ronnie might be able to come home on Wednesday!!

His NG tube has been removed, and he is MUCH happier. He has been allowed a clear liquid diet, but suprisingly, he hasn't wanted much to eat or drink. Does a person's system start to shut down after about 10 days and just not desire to eat or drink? He needs to pick up the pace a little so we actually can go home Wednesday.

He really is back to his old happy self now. He and Chip were teasing like typical brothers, and he was laughing a lot with the nurses. The doctors say everything is looking really good, and even though we will be going home with three tubes still in place, and I will have to learn how to flush and drain some attached bags, I don't care. I just want him home!

I took a couple of pictures today but they didn't turn out. I tried taking them with a new phone, and I apparently haven't figured out how to get a good picture yet. So today I am just going with my stack of happiness blocks!

Monday, August 2, 2010

Hospital - Days 5, 6 and 7

Recovery is progressing - probably not as quickly as Ronnie would want, but progressing nonetheless.

Friday found my brave boy down in the dumps because he was hungry, thirsty and wanted the tube out of his nose. The doctors again said 'No.' Friday found me a little happier because I finally won the interpreter battle. I was informed Friday morning that interpreters would now be provided from 8am until 9pm.

Saturday was hectic because Ronnie's roommate was going on, and the roommate's parent was not understanding at all what would need to be done at home for her son. I was really glad that Ronnie couldn't hear the language that was flying because roommate's mom didn't want him to leave the hospital. She said she couldn't afford the formula, change her son's NG tube, couldn't work the feeding pump, etc. etc. She was quite beligerent. All I wanted to do was the bring the boy home with me.

Saturday night, Ronnie and I watched and ICarly marathon. His belly laugh was starting to come back, and I really enjoyed the time we spent together. Just look at that smile! That's my Ronnie!!

Unfortunately on Sunday, I had no one to stay with Ashley, so I couldn't go to the hospital. Both Chip and Corey spent the day with Ronnie, and both said that they felt he was back to his normal happy self - even the full-on belly laughs!

Rumor has it that Ronnie's NG tube can be removed tomorrow and he can start on clear liquids. Since he hasn't had anything to eat or drink since a week ago Saturday, I know he will be thrilled.

I really, really hoping that he may be able to come home mid-week. Keep your fingers crossed for us!