This and That

I'm still battling the flu, and I am sure you don't want an entire post detailing the coughing, sneezing, body aches and fever. But here are a few random things that have popped up during my recovery. I'm sure I will cover some of them in more detail when I'm back to my well self.

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Finally, finally I have gotten a cat scan scheduled for Ashley's hip, leg and foot. Yea, the one that has been swollen since last October!!! I still don't know what the insurance company's problem was, but I have decided to take it for what it is and find the money to pay for it later. Oh, and the weather forecast for next Wednesday, the day of the scan, is calling for a snowstorm. Go figure.


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I have a surprise announcement about Ashley and an award she will be receiving! I haven't gotten the official notification yet, but I did receive a phone call letting me know she had won. Although I am about to burst with wanting to tell you about it, I need to wait for the official notification..


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All Ronnie's excuses about not being able to do some of his chores are no longer going to work. After receiving his standing wheelchair, I haven't found anything he isn't able to do. Take that, teenage laziness!


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How can it be that Chip is graduating from college (!) in just a few short months. Didn't I just attend his high school graduation?? Oh, and anyone with a job in the Information Systems field, please keep him in mind!


Enough for now - my comfy counch and blanket are calling my name. Hopefully I will be back to a regular posting schedule soon. Hope all of you have avoided the flu this year....

Sportable

I've got the flu and my brain is not working well enough to write an intelligent or meaningful post. So instead, I am going to share this documentary produced by undergraduate broadcast journalism students in the School of Mass Communications at Virginia Commonwealth University. It's all about Sportable, the organization that has made such a difference in Ronnie's life:



ATM: The way my kids take care of me when I am sick...

"They were wrong"

Saying this video is brilliant just doesn't do it justice. It's more, much more, than that.



ATM: Watching Chip lie down next to our dog, Cooper, while they both fell asleep...

Bloodletting

This past Monday was a school holiday and a day off from work for me. And as I usually do on days off, I scheduled as many doctor and other medical appointments as I could. One of the scheduled events involved going to Solstas Labs to get blood drawn for Ashley's upcoming visit with her neurologist.

In our city we have one megalab company with many locations around town. However, even though I have tried several of the locations, we have never had a positive experience. Surprisingly (at least to me), megalab was uncomfortable trying to draw blood from a child with significant special needs, including difficult-to-find veins. Then I found a smaller company that did an excellent job.

In 2007, desperate to have a more positive lab experience for Ashley, we tried the only other company in our city. Then called Carilion Labs, the experience was wonderful. I chronicled all the wonderful things in this post. If was a few years after that when Carilion became Solstas, and unfortunately, our good experiences have not continued.

Ashley has to have blood drawn every three months. Not including this past Monday, the experiences were difficult at best. One of the times, we even had to come back three times just trying to get 4 test tubes of blood. Each of those difficult times, the staff person was the same. So when I walked in Monday morning and saw her again, I was not happy.

The staff person is of Asian descent. I mean nothing by that, but am only trying to paint a picture for you of our experience. When we first walked in, I asked why all the handicapped parking places had been blocked off. The staff person (lab tech?) said, "I don't know, but there are other close parking places." She was correct, but none of those spaces were available. She just responded with, "Oh."

She then took my insurance cards and lab ordering instructions, and after 6 tries at copying the documents, finally succeeded. But this time, Ashley was starting to quietly cry.

The lab tech (staff person?) told us to come on back, and asked, "Why is she crying already? I haven't done anything yet?" I explained that Ashley knew what was about to happen and that was why she was crying. The tech then told me to get Ashley to sit in their special chair. Of course, it would have been nice if she had spoken to Ashley, even if I had to sign what she was saying, but she didn't. I told her that moving Ashley to the chair was not a good idea, and that previously her blood draws were always done with her sitting in her own wheelchair. The tech sighed heavily, and said, "Well, then this may not work."

At that point, she reached out to grab Ashley's arm and put the blue tourniquet on it, and of course, that's when things really started to go downhill.

First, you do not reach out and just grab Ashley's arm, or anyone's arm for that matter. Second, I mentioned that this was going to be difficult, and that we needed a second person to assist. The tech said she could handle it, but everytime Ashley pulled away from her, the tech jumped and acted like Ashley was intentionally trying to hurt her. The tech then said, "You have to keep her still." I chuckled softly, and said it was difficult to hold her, hold her wheelchair, comfort her, and also try to sign instructions to her. I suggested again that she recruit some help.

Another tech was walking by and heard our discussion. She stepped in to assist, and really seemed to know what she was doing. She was firm but considerate with Ashley. When the first tech again said Ashley needed to be still, the second tech said, "Get over that, she's not going to be still. You just have to work more quickly."

With the solid comfort of the second tech, Ashley did begin to settle down, and finally the first tech was able to get the blood drawn.. You see, Ashley doesn't mind getting stuck and having blood drawn. What she minds is people coming at her and not telling her anything, people tugging on her and restraining her without some explanation.

When all was done, the first tech handled Ashley a bandaid and told her to put it on. Say what???!! I told her Ashley would not tolerate bandaids and that they just needed to apply pressure until the bleeding stopped. She pushed a wad of gauze at me and said, "Here, you do it."

Carilion Labs, I don't know why things changed? Were you bought out? Whatever the reason, things have not been good since Solstas took over. And Solstas, even though your website states you are "a caring, client-centered pathology team dedicated to patient care", Ashley and I don't see it that way.

Here's hoping Solstas is bought out by a company that is a lot more like Carilion.

ATM: The excitement in Ronnie's eyes when receiving his new standing wheelchair.

Special Exposure Wednesday

This gigantic origami structure hangs at the Lewis Ginter Botanical Gardens. It is about the size of a Volkswagen Beetle, and ever so beautiful!


ATM: The smile in my heart when Ashley teacher told me that Ashley kept asking for me today.

Why?

This past long weekend was spent nursing sick kids. Both Ronnie and Ashley had very bad colds that I was worried were taking a turn for the worse. There was a lot of Tylenol, decongestant, and chicken soup passed out. Not wanting to share their germs, my hands are pretty much raw now from so much hand washing, but it must have worked because so far, I haven't gotten sick (knock on wood!). We now have a fridge full of antibiotics, and Ronnie and Ashley seem to be getting better.

I did have to take Ashley for some blood work for an upcoming visit with her neurologist. It didn't go well, but I will save that for a later post. Today I just had to post a picture of the parking lot at the lab. It's not the best picture because I took it out my car window. But as you can see, ALL the handicapped parking places as well as the sidewalk access lane were blocked off. I have no idea why, and no one could tell me why. But it's things like this that just make my blood boil...




ATM: The way Ashley lays her head against my shoulder when she is not feeling well.

The Start of My Own Basketball Team

My school district does many things well. That has not always been the case, but with leadership changes over the past 5 years or so, things are better for my children and other students receiving special education services. And in particular, the school that Ronnie and Ashley attend is great.

Ashley has a tee shirt from the school that says, "Tucker High School - Unity in Diversity." And that concept is real at Tucker High School. It is the reason I chose this particular high school, now 50 years old and showing its age, over the shiny, new schools recently built in our district. Diversity and acceptance are universal themes at the school. And now I have the perfect example to show you want I mean.

During basketball season, several of the schools in our district field teams comprised of special ed students. The school teams come together every Thursday to play a game against each other. Ashley's teacher sent me a link yesterday of a video that the school had made of one of those games. The link is below, but before you click on it, here are a few notes.

The video has extra stuff on it. Once you open it, fast forward to the 3:04 position. That is the start of the piece about the basketball games. At around 3:26, you will see my daughter, Jessica. She plays for an opposing school, and is the one in the purple uniform with a number 2 on it. Then at the 3:40 mark, you will get a quick glimpse of my son, Ronnie. He is the one in the wheelchair. Again at the 4:20 position, you will see Ronnie. At 4:40, you will see my sweet Ashley making a basket. At 4:50, basketball star Ronnie makes a basket, and at 5:10, Jessica makes a basket!

J.R.Tucker is a very special school! Here's the link: School Matters video

ATM: Showing this video to my co-workers and watching them dab the tears from their eyes.

Nary a Thought

Ronnie did something this past weekend that really surprised me. I thought I had a pretty good handle on his skill set, especially as it applies to general educational skills like reading and writing, but on one subject I think I may not have a good handle - his understanding about exchanging money for goods and services, and his ability to understand the intricacies of spending/saving money.

Ronnie likes video games, perhaps a little too much sometimes. One of his Christmas presents was a gift card for online gaming. He also received from Chip a couple of video games that he could and does play online with his friends. But between Christmas and last weekend, he went online and bought a lot more games - $220 worth to be exact. Thing is, he doesn't have $220.

When the online gaming console is set up, a credit card must be registered with the account. Chip used his credit card with never a thought that Ronnie would buy more games. Chip and I were both wrong. He was a game buying fool!

I truly believed that Ronnie understood the whole setup, and that he would ask if he wanted more games, and especially that he understood that $40 a pop for a game was pretty excessive. But when we brought it to his attention, he didn't seem to understand. It was like he thought, "Wow, more games - I think I will try them." with never a thought about the money.

As we continued to try explaining to him why what he did was unacceptable, he got angry - not because he knew what he was doing and still did it intentionally, but because we were not happy. He gets angry when we are not happy with something he has done. So, I think he is still missing the point of spending the money. I think he really just doesn't understand.

So, now it's back to the drawing board to help him get his money skills up to par. I'll also be addressing this issue in his next IEP meeting. But in the meantime, he's lost his gaming privileges. Talk about a really unhappy camper.....

ATM: Valentine's Day Cherry Cake with my children.

Special Exposure Wednesday

Ashley said she wanted a big phone. I think this one is just a little too big...

ATM: Watching Ashley try to form her fingers into the sign for 'I love you' when she is sitting with her big brother, Chip.

Getting Healthy

Last week I wrote about the new Department of Education guidance that states students with disabilities should be provided sports opportunities through school. I'm not naive enough to think that is going to happen overnight, but so many of our children are not getting an adequate amount of physical exercise, children with disabilities in particular. I don't want to generalize about children with disabilities, so I will confine my discussions to Ashley and Jessica, two of my children who absolutely do not get enough exercise.

Let's start with Jessica. Due to some of the medications Jessica takes as well her her predisposition to being overweight and combined with the fact that in her group home little attention is paid to her diet, Jessica is overweight. More than just a little chubby, she is 22 years old and wears a ladies size 2X. Just over a year ago, she was wearing a size 1X. My concern is that she will continue to gain weight and face the medical issues associated with that.

(Just for the record - I am not bashing anyone who may be overweight. I'm right there myself. But in Jessica's case and Ashley's case, extra weight presents some medical challenges. Neither girl's worth is measured in pounds, but I want them both to be happy and healthy, and that means managing their weight from a medical standpoint.)

Ashley, because she is deafblind and has seizures, is not someone who exercises for the sake of exercise. At school she will walk around the track with her classmates, but I'm pretty sure she doesn't understand the value of that or of any planned exercise for that matter. And to complicate things, because she has a very limited list of foods she will eat (most of them carbs), she has a tendency to gain weight. I know very little about her family history, but like Jessica, I want her to be happy and healthy.

So I want to be proactive on the exercise front. I want to find something both girls might enjoy, or at least tolerate, and which provides for exercise. One idea I have is a treadmill. Regardless of the weather, Ashley and Jessica could walk indoors, under supervision. I think I will still need to do something to make walking appealing to them - perhaps mount an iPad somewhere on the treadmill. But, while I am saving up to buy a treadmill, I would like to find something else that might provide some exercise, and I would love to know if you have any ideas.

Jessica doesn't like pools, so swimming is not an option. Ashley will get in a pool but doesn't move around once in (probably related to her deafblindness and sensory issues). I prefer not to do our walking outside or at the mall given Ashley's seizures, and there are really no organized programs or sports that either girls would fit in or which would run more than a few weeks a year. The only other thing I thought about was a mini-trampoline.

What are your thoughts?

ATM: That time each night that Ashley snuggles down into her bed covers and gives me her sweetest smile of the day.

Bonnie and Myra

I heard something on NPR the other day, and am happy that a transcript of the show was also available. I think it would be well worth a few moments of your day to read this. Listening is better and a link is provided for that also.

The story provides a snapshot of life and society as I pray it will universally be one day - acceptance of difference, and an understanding that difference in no way impacts the value of love and family.

Enjoy...

A Life Defined Not By Disability But Love


ATM: The wonder in Ashley's eyes when we visited for the second time the Chihuly Exhibit at the Virginia Museum of Fine Arts.

My Friend

There are few things in the world better than having that one special friend that you can always go to. When you are happy and want to share your joy – when you are sad and need someone to cry with you – when you feel like the last bit of life has been sucked out of you and you need someone to help you refill.

Whether we talk every hour, every day, every week, or whenever we both have time to hold the phone in our hands for a few minutes, every moment is special. Every word shared like a warm blanket being wrapped around our shoulders.

Both our lives can spiral out of control at a moment’s notice, but we each know where to go for that hand to hold you fast.

There is never judgment, condescension, or dismissal. Just understanding, empathy, and comraderie.

You, my friend, know who you are. And I hope you know how grateful I am to have you in my life.

ATM: The smile on Ashley's face when I wake her and tell her that it is Friday!.

Effects of Adoption?

I'm really curious to hear your thoughts on this article:

What Can A Tiny Baby Know?

ATM: Every moment when I don't even think of my children as adopted, only as my children.

Special Exposure Wednesday

Last Sunday, the boys and I watched the Super Bowl, but Cooper watched the Puppy Bowl!!

ATM: The fact that Chip is now relaxing a little bit about his heavy workload at school and his internship....

Left Out

We had a party at our house this past weekend that included students, mentors and professionals in the field of disability. They were encouraged to bring their families, which some did, and everyone seemed to have a good time. Everyone, that is, but Ronnie.

Ronnie was the only Deaf person at the party. Chip and I were the only people besides Ronnie who knew sign language. (I was a little surprised at that actually.) I was busy with hostessing things - setting out food, provided drinks, chatting with guests - and Chip was, thankfully, watching Ashley for me. Sometime she does ok in large groups of people and other times she doesn't. This party was one of the "doesn't" times. So Ronnie was pretty much left to fend for himself. But that didn't work well.

He ended up staying in our guest bedroom that has some video games set up in it. He played games the whole time, and I would bring him food and drinks. At first I encouraged him to join the party, but then realized that it would be uncomfortable for him. He can read lips a little, but trying to do that in a party setting is extremely difficult.

So I've learned my lesson. At any similar events, and if Chip and I might be otherwise occupied during the event, I will need to find someone to provide signing support. I felt so bad after the party was over, and I apologized. Ronnie said he was more than fine just playing games, but I promised that next time would be different.

ATM: Watching our dog, Cooper, enjoy the Puppy Bowl on Super Bowl Sunday. Picture tomorrow....

It's Time

So a couple of weeks ago, the Department of Education released new guidance concerning school sports for students with disabilities. If you missed all the buzz, here is a link that explains things pretty well:

Sports are a civil right for the disabled

And here is one organization's viewpoint on the ruling as well as comments that they have heard from the community:

What everyone is getting wrong about special ed sports

The fact that my school district has no real sports opportunities for Ronnie (wheelchair user) has always bothered me greatly. I even floated the idea of forming a district-wide wheelchair sports team about a year ago, and the answer I got was not surprising. The school football team would let Ronnie be an honorary manager for the team. In other words, he could sit on the sidelines and hand water bottles to the players. As long time readers of this blog know, Ronnie is a wheelchair athlete. He is on a non-school related wheelchair basketball team, a team which took a trophy in a tournament last week. He also has played lacrosse and participated in track and field. He is an athlete, not a water bottle manager.

It's time my school district, as well as all other school districts, figured out how to field teams for wheelchair sports. How has your school district responded to the recent DOE ruling, and have they done well in the past for sports for athletes with disabilities.

ATM: Watching Chip take care of Ashley during a stressful time for her this past weekend. He's such a wonderful brother!

Monday's post will be up a little later than usual. It's Sunday evening and I have a Super Bowl to watch!

"The Motherhood"

Yes, this is an advertisement for a car, but I laugh at it everytime I see it. Hope you do also! Happy Friday!



ATM: Knowing that it is Friday - which means the weekend - which means at least one nap on the couch with Ashley...