Ashley Update

I have finally gotten a little more information from my school district about Ashley's "incident" last week. After being passed from the school's assistant principal to a woman in Human Resources and finally to the school principal, here is what I found out:

• The school nurse and the school security officer were the ones who witnessed what happened and the ones who made the initial report to the school principal.
• There are cameras on the school campus but because they are often in the shade, they often don't supply usable footage
• There are no cameras in the classrooms, and no plans to put any in
• There are cameras in common areas where students congregate
• A report was filed with Child Protective Services, but neither the school staff nor I have heard anything from CPS
• The principal believes that removing Ashley's one-on-one aide from the school campus was the appropriate action to take, but can't tell me anymore than that because it is a "personnel issue."
• When the school principal is given more information, he will share it with me if he can

Not a lot, and you may notice that conspiciously missing from the list is how the actual injury occurred.

Here are a few of my thoughts:

• I have a great deal of respect for the school nurse and for Ashley's teacher. Just hearing that the nurse was the reporter made me feel better. I understand that she has probably been told not to share any information with me, and I don't want to ask her to jeopardize her job by doing so. But I can relax just a bit because I believe beyond a shadow of a doubt that she and the teacher have Ashley's best interest at heart
• I have discussed everything with an attorney
• I will not wait much longer for a detailed explanation on how the injury happened

I thought Ashley has recovered both physically and emotionally from the injury, but now I am not so sure. Yesterday, I needed to take her for some blood work before our upcoming visit with her neurologist. She started crying the instant the tech touched her arm - and it was not the arm with the injury. When the tech and I tried to hold her arm, she completely freaked out. I tried to calm her but it didn't work. She was so distressed and worked up that at one point she bit me - hard. I know it was just a reaction but I also knew it was time to stop trying to get the blood.

So, was her reaction a result of what was done to her at school? I don't know, but I do know that blood draws have never been a problem before. She will usually hold her arm out, point to the vein, and then tell the tech "good job" when she is finished drawing the blood. Yesterday was a complete departure from that. And now I don't know what to do.

We've got to get bloodwork done to make sure her seizure meds are dosed appropriately and to make sure no liver damage is occurring, but I just can't put her through that again. Will time help? I don't know...

Don't Mess With The Best

My friend, Tammy Hodson, posted this on Facebook, and I just had to share it with you! Considering the things I have been experiencing trying to get information on how my daughter was hurt at school, this just couldn't be more timely. Perhaps I need to forward it to the folks at my school district that are refusing to provide me with information!

12 REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH SPECIAL NEEDS PARENTS:

1. Some of us have given up on social skills and don't care what we say or do.

2. We're not afraid to have a serious "meltdown" of our own.

3. We are tired and all the patience we have is for our kids.

4. We have A far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.

5. We can get you...in a hold/lockdown position in less than 3.5 secs.

6. We can shoot you a look that would make a linebacker tremble in his boots.

7. Chances are it's been a while since we've had a full night of sleep and that will give us a reason to plead insanity.

8. Our tolerance and patience is for our kids who didn't choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.

9. We're probably already on edge and it would be stupid to push us over.

10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?

11. We've had to fight from the moment of our child's birth, so by the time you piss us off we're seasoned battlers and could win a war.

12.We devote our lives to our children and don't need more stress and people who don't understand our life.

Special Exposure Wednesday

Then - puppy's first day home and all of 10 pounds....

And now - 10 months old and 80 pounds of furriness!

Impassioned Youth

Last Friday, I shared a video with you that was created by youth with disabilities in Virginia. Here are five more. Great job, guys!

A Week Later

It's been a week since Ashley was abused by a school staff person. A week during which the school district is refusing to tell me anything.

I know that the pediatrician filed a report with Child Protective Services, but every time I ask the school if they did, they won't answer me. I have asked verbally and in writing for an explanation on how the injury happened, and the only answer I get is that it is a personnel matter and they can't share anything with me.

Silly me, I thought it was a child abuse issue.

My latest email to Central Office (the place I was passed off to by the school principal) brought a response that said, "I am conducting a thorough investigation but because it is a personnel matter, I can't share anything with you."

I think it's time for a call to an attorney. What do you think?

(Ashley's arm is still bruised and a little swollen. Since it's been a week and it's still that way, you can imagine how bad the injury was....)

Choice

October is Disability History and Awareness Month in Virginia. Some young people who attended the 2012 Youth Summit and Youth Leadership forum are making public service announcements. Their first one is titled, "Choice."

Great job, guys, and I am really looking forward to the others!

The Amazing Raise

From 6am Wednesday until 6pm Thursday, you can help athletes like my son, Ronnie, by participating in the Amazing Raise, and pledging your support to Sportable.

Sportable is the organization behind Ronnie's wheelchair basketball team and lacrosse team. It is because of Sportable that Ronnie is able to play team sports in his wheelchair. Our school district, in fact most school districts, do not have organized sports programs for athletes with disabilities.

Sportable supports disabled athletes from ages 5 to 100+. Here is a quote from their website:

We don’t just provide adaptive sports and recreation opportunities in RVA –The reason Sportable exists is to transform the lives of people with physical and visual disabilities through sport! We know that is a bold claim and some might question whether we can really achieve that mission. Our response – come meet our athletes, hear their stories, watch them when they are in their “zone”. We can guarantee they would agree that in some way a transformation has occurred. This visionary approach to our mission allows us to keep pushing forward and aiming high—just as we ask of each of our athletes!

For a $50 donation, you can help ensure that this very important program continues, and that people like Ronnie can continue to participate in sports. Heck, the next star paralympian may already be in training at Sportable!

Please consider supporting Sportable during the Amazing Raise! Here is a link the more information and a contribution page:

Sportable Amazing Raise

My Worst Fear

It was on of those calls every parent fears. The school nurse calls to tell you that your child has been injured while at school.

Ashley's arm was injured, she said. Very swollen and bruised. The concern in the nurse's voice was evident, leaning even to the side of perhaps a choked up feeling. I could tell that the silences between her words told more than the actual words themselves.

Finally, the nurse indicated the injuries may have been caused by a school staff member. The nurse told me that pictures had been taken, and that I needed to make an appointment for Ashley to see her doctor. She also said that the school principal would be waiting to talk to me when I arrived to pick Ashley up.

With a doctor's appointment made, I rushed to school. Immediately I checked out Ashley's arm. It was swollen to almost twice its size. It was red and black and blue. Fortunately, Ashley did not seem to be too bothered by it because she had her iPad and was playing a game.

The school security officer stood close by. The nurse called for the principal. He arrived and the first thing out of his mouth was, "Are you going to send Ashley to school tomorrow?" After some back and forth conversation, I got out of him that Ashley's aide was suspected of the abuse and that statements were being taken from other staff. I mentioned that we were leaving for the doctor's office, and the principal said he would call me that evening.

The doctor was very upset. She did a full CPS (Child Protective Services) workup which meant a full physical and pictures. She wanted an x-ray, but by that time the facility was closed. An appointment was made for the next morning.

Ashley was starting to feel the pain once we arrived back home. She didn't want her arm touched during her shower, and about 3am, she woke up crying and saying her arm hurt. After some ibuprofen and some ice, she slowly drifted back to sleep.

The morning's x-ray revealed that no bones were broken. I took Ashley to school and tried to get some more information. It was at that point I realized the school staff was stonewalling me.

The principal told me that Human Resource was in charge of the matter and they were telling him what he could share with me. Not much.

So now what? Hopefully CPS will call me soon. But I want to know what happened and who caused the injury. I want to know this will not happen again - to Ashley or any other child.

I'm scared - I'm angry - and all I can do is sit and wait. I'm not doing that very well....

We Need More Hope!

I wish I had known about Hope Springs Farm when we recently traveled to Hershey, Pa. I would have visited. I would have talked to the owner about how the idea became reality. We need more places like this, lots more.



Take a few moments to tour their website, and also check out this media article about the farm. And then anyone that is willing to help me get a place like this started in Virginia, call me!!!

Ouch

This is my hand. This is my hand with rheumatoid arthritis and carpal tunnel syndrome. This is my hand wearing a brace and following doctor's orders to rest it, including no keyboarding. So, I need to take a few days off from blogging, but hope to be back early next week!

Special Exposure Wednesday

What? You've never played the keyboard with your butt? Or your ear? Or upside down? Or backwards?

Spoiled?

Do you think your child with special needs is spoiled? If so, what is your definition of spoiled, and who is doing the spoiling?

Someone made the comment to me the other day that Ashley was probably spoiled rotten at school. I don’t know if that is true or not, but I do know that Ashley is quite strong-willed and likes getting her way. Couple that with the fact that she is stinking cute, and yes, she may get spoiled a bit at school.

But then I started thinking – do I spoil her? Well, I do buy cupcakes every week so she can have one for dessert with her dinner. I’ve always rationalized that because it is the only sweet that she will eat – no candy, cookies, ice cream, etc. – that it’s really not spoiling her that much.

And yes, she is very particular about her clothes, especially shoes, and yes, she does have 14 pairs of Converse high top sneakers, but again, they are the only shoes she will keep on. And that has been the case since she was two years old. So is that spoiling her?

She does get disciplined if discipline is necessary. She doesn’t always get her way at home, although because she has so few demands, it might seem like she does. So I don’t know if I spoil her or not.

I do remember something that my former mother-in-law told me one time. She said that you can’t spoil a child with too much love. Too many things? Yes. Too much love? No.

So, I don’t think I spoil Ashley, but I do know that I love her from here to beyond. If she is spoiled from too much love, I believe I can live with that!

It Just Gets Better

Remember that little water leak I told you about? Well, this should be the last day of the great dry out. The contractor came by last Friday to take a look. He hasn't given me a complete estimate yet, but he did say that once he gets started, it should take about 2 weeks to complete.

He also said that submitting the estimate to the insurance company and getting their approval could also take a week.

So, we've been out of commission for a week and half already. Then we add a week for the insurance company, and two weeks for the contractor, and for over a month Ashley will have to sleep with me. And that means little to no sleep for me.

It just keeps getting better....

The Case For Not Mutilating

One of the bloggers that I visit regularly is "Single Dad / Disabled Daughter." Although I disagree as often as I agree with what he writes, I like that his posts make me think differently. They challenge me to see an issue from more than one side, to consider points of view that at first seem abhorent to me. But the bottom line is - I have an immense amount of respect for him and the way he advocates for his son and daughter.

Single Dad recently had an article posted in Psychology Today magazine. In the article, he discusses the "Ashley Treatment", a subject I have written about several times.

It's well worth your time to check out the article, "The Case For Not Mutilating Your Child."

Tequila at School?

Have you heard the country music song titled, "Tequila Makes Her Clothes Fall Off?" It's about a woman who goes out partying and everything is fine unless she drinks tequila. If she drinks tequila, first she loses her shoes....then her earrings...then her jacket....and well, you get the idea.



I have to wonder if Ashley's high school is serving her tequila.

The first morning of school, I received am email from the teacher telling me that Ashley's shoes were rubbing her feet because she didn't have any socks on. I told the teacher that Ashley got on the bus with shoes AND socks that morning.

Then, when Ashley arrived home and I was helping her change out of her clothes, I noticed that she didn't have any underwear on.

The socks mystery has been solved - Ashley took her shoes and socks off on the bus, but the bus aide chose not to put her socks back on with her shoes. They handed me her socks this morning when they came to pick her up. I told the bus driver that she should not be allowed to take her shoes and socks off on the bus, and that she understands the word "NO" quite well. The drives scoffed and said, "yea she does but she still does what she wants." I told him that was unacceptable, and that I assumed there was an aide on the bus to help with such situations. He scoffed again. (I won't describe the aide in detail but will share this, it takes the aide 10 minutes to step off the bus, lower the ramp, tell Ronnie to get on the ramp, raise the ramp, and then secure the ramp door. 10 MINUTES!!!)

The underwear mystery is not solved.

Guess that was some good tequila....

Special Exposure Wednesday

It just gets better and better. First I thought it was just a little water leak. Now I'm told that walls and ceilings have to come down. And today? Today the room had to be sealed because there may be lead paint....

I'm not handling all this well.

Hmmmm.....

Well, it is the morning of the first day of school and I haven't heard from a bus driver. Will Ashley and Ronnie get picked up this morning? Will the bus be a wheelchair bus? Will the school transportation folks be glad to hear from me?

Time will tell.....

UPDATE - Mid-morning

I began my calls to the school transportation office about 7am. Although the phone was answered three times, three times I was mysteriously disconnected. Finally on the fourth call, I was told a bus number and pickup time.

And lo and behold, the bus did actually show up and it was only 6 minutes late. I think that is a new first day of school record.

The bus driver was somewhat familiar to me, and he seemed to recognize Ashley. The aide - OMG - I wonder what retirement home they recruited him from. He had to lower the wheelchair ramp, make sure Ronnie was positioned correctly, raise the ramp, and then close the ramp door. The only took 10 minutes!

I was late for work and probably will be the rest of this school year.

Now, I wonder how the afternoon bus drop off will go....????

The 1500th, The Disaster

Today's post marks my 1500th post! Who knew I had so much to say?

I had hoped to make today a celebration - to highlight some of my favorite posts - to celebrate the friends I had met over the years of blogging - to commit to continue so that my children have a record of my thoughts.

But no - disaster had to strike, and I can't compose my mind enough to do all those things.

Last Tuesday, Ronnie comes and tells me that water is dripping in his closet. At first, I think he must be mistaken - there is no plumbing in the attic (I have a one story house). But after a few minutes, I realized that the part of my air conditioner that is in the attic has a drain pipe to take condensation outside the house. Except it wasn't going outside the house....

The air conditioner unit was pretty new. I just had it installed late last Spring. I immediately called the HVAC comnpany and they agreed to send someone over the next morning. I turned off the air conditioner to stop its sweat and start ours.

Once the repairman arrived and lumbered up to the attic, he pronounced that the drain pipe had been 'broken'. Heck, he even showed me the broken piece. Thing is, I'm not sure I believe him. No one had been in the attic since the unit was installed. I'm thinking, though I can't prove a thing, that the pipe was never connected, and the 'break' was just done to cover that up. Either it's that or I have some mighty strong critters having parties in my attic.

It is, however, a moot point since I can't prove a thing.

After the pipe was hooked up, I called my insurance company. I was still thinking we were just dealing with some wet carpet and maybe some repainting in Ronnie's closet. Well, armed with his trusty moisture gage, the water mitigation person my insurance company sent over told me that not only was Ronnie's closet very wet, but his adjoining walls and ceiling were also wet. Then he asked what was on the other side of Ronnie's wall. I told him it was Ashley's room. He checked that and it too is wet - almost half the room. Again, not completely understanding the impact of his words, I'm nodding and saying "OK". But then he hit me with something that turned that "OK" into "OMG".

He told me that both walls, both closets and both ceilings would have to be demolished and redone. And the sooner they could start, the better. He wanted everything out of both bedrooms by the next morning so they could bring in fans and a dehumidifier first, demolishing tools after that.

With a dazed look on my face, I told him that there was no way I could move both kids and all their belongings and medical equipment in one night. I would be lucky to get Ronnie moved. He left saying, "Just do the best you can do."

I got Ronnie moved by the next morning. The fans and humidifier came and have been running for three days now. Saturday, I moved Ashley into my room, and spread all her stuff all around the house. The only thing left in both bedrooms in the bed, and I have no where to put those if I am to leave a path wide enough for a wheelchair.

Now we wait for the demolition and for things to get put back together. In the meantime, my house looks like a hoarder's house, I'm getting no sleep because Ashley is in my room, and oh yea, school starts tomorrow and I have no idea where clothes, backpacks and lunch boxes are.

So - Happy 1500th post. May the next milestone be more of a celebration!