The Clock Is Ticking

It’s the end of the first week back at school, and for the three of my children still in the public school system, almost everything has gone very well. But, the one thing that hasn’t gone well is very very not well.

In my town, high school starts at 8:45 am. The past two years, Ronnie and Ashley went to the same high school and were picked up by the same accessible bus. The bus driver knew my family well, and understood that as a single parent, getting to work on time was important. He changed his route schedule just a bit to pick Ronnie and Ashley up first. That allowed me to get to work on time. Not so this year….

The problems started the Friday before school was scheduled to start. As I always do, I called transportation to verify that I still had the correct bus numbers and schedules. Ronnie moved to a new high school this year, so I was dealing with two bus numbers and schedules.

When I called, the transportation office gave me the bus number and pickup time for Ashley – bus number 1980 and pickup at 8:16 am. That was going to be a problem by preventing me arriving at work by 8:30 am. But, I figured I would let the transportation issues settle in the first week, and then I would make my request for an earlier pickup.

Next, I asked for Ronnie’s bus information. “Ronnie who?”, they said. Even though his IEP denotes special transportation with pickup and drop off at home, there was no record of that need. I tried to reason – I called the school teacher and principal – I got angry – and then I drew a line in the sand. Ronnie would not be at school the first day unless someone picked him up.

Perhaps as retribution for that line in the sand, on Monday (Labor Day) I got a call saying bus 300 would pick him up at 8:20 am. Again, that’s a problem for me getting to work on time, but again, I decided to let things ride for the first week.

Here’s how the first week went:

Tuesday – Ashley picked up at 8:30am, 14 minutes late. Ronnie picked up at 8:55 am, 35 minutes late and 10 minutes past the start of school. Once he arrived at the school, I estimate he was about 30 minutes late for school.

Wednesday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:50 am, 30 minutes late, and again, late for school.

Thursday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:45 am, 30 minutes late and again, late for school.

I’ve called and emailed and whined and begged and been professional all the while. The only response I get from transportation is that they are discussing to see if there are any other options.

Well, school district, here’s an option – you are not providing services as outlined in Ronnie’s IEP since he is late getting to school each day. I feel a state Department of Education complaint brewing, and compensatory time building.

Yet Another Disrespectful Movie

I really hadn’t planned on going to see the new movie with Ryan Reynolds and Jason Bateman titled, “The Change-Up.” To me it looks like just another silly switching bodies type of movie and after Freaky Friday, I think I have had my fill of that. But there is another even bigger reason I won’t see it.



Just like the movie Tropic Thunder, The Change-Up attempts to get laughs at the expense of people with disabilities. In one exchange early in the movie, Reynolds’ character asks Bateman’s character about his young twins. “Why can’t they talk yet? Are they retarded or something?” he says. Reynolds follows up with, “the one on the left looks a little Downsy.”



The Special Olympics organization is calling for an apology from Universal Pictures. The ARC is calling for an apology, and the disability community is up in arms and expressing their distaste on blogs and social networking sites.



It is long past time for this disrespect to stop. Even if we all boycott the movie, it probably won’t be noticed because it is generally a stinker of a movie. But, if you have a way to express your outrage – if you are offended – if you want movie executives to stop trying to get laughs at the expense of those we love, I urge you to let your opinion be heard.

Disappointed

I checked Facebook Sunday night just before going to bed and was surprised to see a status update for one of our local news stations. It said something to the effect of “join us tonight at 11pm to hear about what Virginia should do to the developmentally disabled in the state.”



Whoa!!! That got my attention, and I was determined to stay awake until 11pm to hear what was said. Unfortunately, tiredness took over and I didn’t make the broadcast.



So, when I got up very early Monday morning, I checked Facebook again, and sure enough there was another update from that news station that said “We ran a story tonight on what Virginia should do to the developmentally disabled. State officials are collecting public comments on this issue through August 15th. Comments can be submitted by e-mail to…”



The more I thought about how that was worded, and the more I worried about the content, the angrier I got. So the first thing I did after getting ready for work and getting the kids moving was to check the actual website for the news station to find out what Virginia was going to “do” to the developmentally disabled.



Apparently, other people had issues with the words and by the time I got to the station and back to Facebook, the wording had been changed. All reference to “do to the developmentally disabled’ had been changed to “care for the developmentally disabled.” The content of the story referenced a survey being conducted by one of the state agencies that support people with disabilities.



I’m really disappointed that the news station (WTVR) made such egregious statements even though they were corrected later. This is a station that advertises itself as the most honored station in Central Virginia. Perhaps they are, but these comments were dishonorable at best.

Just Go Another Way, Why Don't You?

Do you think I can't see the disgusted look on your face?

Or the impatient drumming of your fingers on the steering wheel?

Do you really think that gunning your motor is impressing anyone?

Or that the way you inch forward over and over again will make us all move faster?

If five minutes is going to make you really late for wherever you are headed, why don't you just turn around and go another way?

I know you live in my neighborhood because I see your car at the same time every morning. Haven't you figured out that the bus that picks up two of my children arrives at exactly the same time each morning?

It takes more than a few minutes for my children to get on the school bus. The aide must get off the bus, open the door to the wheelchair ramp, lower the ramp, help my son back his wheelchair onto the ramp, buckle the safetly strap around him, raise the ramp, shut the door and secure it.

Then the aide must make her way back onto the bus while I help my blind daughter find her way to the bus steps. The aide stands at the top, takes my daughter's backpack, then reaches out to help my daughter get on the bus.

Then after everyone is seated and secured, the bus can move.

And you, very impatient, rude person can speed up, just to get more frustrated when the bus has to stop again.

I'm really glad that you are not one of my co-workers, because if you act that way when two children with disabilities are boarding the bus for school, I can just imagine what an a** you are in the office.

Get The Story Straight

It's been a crazy few days for Ronnie. Ronnie has a friend (a girl) - I'll call her Friend Girl for this post - who is rather troubled. Friend Girl is in a foster situation although she is 18 years old. I know almost nothing about her except that she is Deaf, and she was placed in a therapeutic foster home in Virginia from Texas.

Friend Girl has attended a couple of the same events as Ronnie. She also came to Ronnie's birthday party. Ronnie and Friend Girl are in school together, and both are fluent signers.

The middle of last week, Ronnie got some desperate text messages from Friend Girl saying she hated her foster mom and had run away. She said she wanted me to be her mom, and Ronnie, bless his heart, said he would be happy to share me with her.

I urged Friend Girl (through texts) to go back home or to go to a friend's house. She kept wanting to come to our house, but I told her that wasn't possible.

Several days later, and after involvement by social workers and the police, Friend Girl ends up in the mental health crisis unit for our county. The worker there calls me and said Friend Girl wanted to come stay with us. I explained to the worker why that wasn't possible, and I suggested that she get some intensive help somewhere. The worker agreed, and left to try to convince Friend Girl to go to the hospital.

We heard nothing for a day, and then we got some phone calls via an interpreter for Friend Girl. She was indeed in the Mental Health Crisis Unit at St. Mary's Hospital, and she wanted Ronnie to visit her.

I was willing to take him, and asked the on duty nurse if that would be possible. She said no, visitors had to be at least 18 years old. Then a little while later, I get a phone call from the hospital saying that the doctor had given special permission for Ronnie to visit. So after dinner, we loaded up his wheelchair and headed to the hospital.

We were buzzed into the foyer of the unit (there is a lot of security on a psych ward), but were then told we could not visit. I argued my case, asking why first we were told we could and then we were told we couldn't. The nurse on duty at that time said nothing but "I'm sorry, you can't come in."

You know, I can understand not being allowed to visit, and I was surprised that we were told we could. But I'm really not happy that they played with the emotions of two children. Ronnie has been worried sick about Friend Girl, and to believe he would be able to see her and then denied that gift was a horrible blow to him.

As an adult who has had many, many dealings with hospitals, I really wasn't surprised at this ineptitude. But Ronnie has not had to deal with this before, and it broke my heart to see him disappointed.

Please keep both Ronnie and Friend Girl in your prayers.

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.

This Great (?) Commonwealth

This is turning into a banner year here in this glorious Commonwealth in which I live. First, the state's budget is in dire straits - there's no disputing that. But our legislators, in their infinite wisdom, have decided to balance that budget by cutting health care for the poor and disabled and reducing education funding.

It probably comes as no surprise that most of the legislators are good old boys whose children are grown and healthy.

Today, however, I discovered the icing on the cake.

State Delegate Bob Marshall of Manassas says disabled children are God’s punishment to women who have aborted their first pregnancy.

Now I understand. God has spoken and His apostles are just following His commands. Or so they think.

Jerks - big stupid jerks.

****UPDATE****

In this morning's Richmond Times Dispatch newspaper, Delegate Marshall claims we misunderstood him. Too little, too late, Bob...

Facebook group calling for Mr. Marshall's resignation

Virginians Against Bob Marshall's Ignorance

Petition Calling for Delegate Marshall's Resgination

Affliction Day

This article below appeared in the Mansfield News Mirror, a Texas newspaper. Before reading it, consider the definition of 'affliction':

af·flic·tion   /əˈflɪkʃən/
–noun
1.a state of pain, distress, or grief; misery

I swear, if my school district ever wants to have an 'affliction' day, my child will not be the one that is afflicted. (Notice the non-blindfolded student laughing at the student pretending to be blind in the picture to the right.)

********************************

Students Spend Challenging Day

The students at Mansfield High School have experienced learning on a whole new level. The past few days the students in Robyn Russell's Teen Leadership class have been preparing to have an affliction day. The students were blind, deaf or mute. They had to live one day the way a child or adult with disabilities would in an educational atmosphere.

The students were given tasks they had to complete with a partner who did not have a disability. One of the tasks was for each student to go down the hall and get a drink of water. Many of the blind students had their hands out to feel for walls and depended on their partner for guidance.

"I was very disoriented while walking through the halls," said senior Ryan Collins. "I have been walking these halls the last four years but as soon as the blindfold went on I had no idea where I was in the school."

Another activity was to color a picture of a tiger. First, the teacher asked the students to write their names on the paper. Most of them ended up being sideways or upside down. Next, they were given two markers and told to color a picture.

"I felt lost," said Shayla Blackwell, a sophomore. "I didn't even know what I was coloring let alone what color markers I had in my hands."

The students also had to complete a workout routine. The majority felt dizzy and embarrassed. All the students believed even in the short period of time they were disabled that one of their other senses became stronger.

Affliction day gave students a small insight into the life of a disabled individual. The tasks they completed were simple to those without disabilities, but they could tell that life would be much more difficult with a handicap. The students got to experience a few of the challenges having a disability creates, but there are many more such as discrimination in employment, higher insurance and for teenagers a social status that can be difficult to overcome.

Many of the students said walking in another person's shoes is the best way to experience their life.

Chief of What?

I’ve never been a Sarah Palin fan, but I’ve got to applaud her for calling out The Obama Administration’s Chief of Staff, Rahm Emanuel (pictured to the right), when he recently scolded participants in a strategy session, calling them, “F---ing retarded.”

Mrs. Palin wrote on her Facebook page, “Just as we’d be appalled if any public figure of Rahm’s stature ever used the “N-word” or other such inappropriate language, Rahm’s slur on all God’s children with cognitive and developmental disabilities – and the people who love them – is unacceptable, and it’s heartbreaking.”

That one posting incited a firestorm in the press. Here are a few of the articles, and I hoping that again attention will be called to stopping the use of this hurtful and vile word.

Apology NOT Accepted

Emanual Deserves a Liberal Scolding

In the Offensive Spotlight

Emanuel Offensive Comment

Private Apology is Not Enough

Balancing On The Backs of The Weakest

My home state, Virginia, has a rotten record of providing services to people with disabilities. Virginia is consistently ranked between 40th and 47th out of 50 (states) on services. So, I shouldn’t be surprised by the latest state budget recommendations. But I am. I didn’t think things could get a lot worse, but I was wrong.

I understand that state budgets have been hit hard during this economic downturn. I’m a state employee and I’ve seen the cutbacks, the extra jobs we all have to take on, and the layoffs. Virginia is required by its constitution to have a balanced budget, i.e. the state cannot act like the Federal government and just go deeper and deeper into debt. So as we approach this next budget cycle, the cuts which in the past have been deep, are going right to the bone. Unfortunately, the proposals will hit people with disabilities the hardest.

Here are some examples of the proposals:

• Eliminate 200 Mental Retardation waiver slots


• Reduce the number of hours allowed for respite care from 720 annually to 240 annually


• Postpone mandated increases in annual waiver slots


• Freeze enrollment in the 5 waivers


• Reduce provider rates for waiver services by 5%


• Reduce rates and prior authorization for intensive in-home services


• Limit annual visits for physical, occupational and speech therapies.

Currently in Virginia, 5,115 individuals are waiting on the Mental Retardation Waiting List. Ashley has been waiting 5 years on the Developmental Disabilities list, and she is still in spot 329. The waiting lists will continue to grow and people who need services to become productive members of society will languish in sub-standard care. The providers, usually personal care aides, are already paid an extremely low rate. That is why families have a hard time finding and keeping good aides. And respite – let me tell you how I use my respite:

720 hours a year works out to about 13 hours a weekend, which is the way I have chosen to use mine. 2-3 hours each weekend is spent grocery shopping. Another hour is spent waiting at the pharmacy. Car maintenance consumes another 3 hours (the total for the year divided by the number of weekends). Home and yard maintenance takes another 2 hours. Then there are the errands for my other children – haircuts, school shopping tasks, clothes shopping, etc). Those will take another 2 hours. Then, because I am a state employee and our resources have been cut so drastically, I always have at least 50 hours of work to accomplish in a 40 hour work week. On the weekends, I use my respite time to do some of my work. – about another 2 hours. And, if there is anytime at all left, I treat myself to a few minutes at Starbucks.

I can make it work with 13 hours a weekend of respite. I absolutely cannot make it work if those hours are reduced to 5 for the weekend.

But here’s the icing on the cake. At the same time as this proposed dismantling of community-based supports, the current administration is continuing plans to rebuild a NEW, 75-bed, state-operated institution in Chesapeake, VA.

This all makes me sick to my stomach. Virginia's state motto is "Virginia is for Lovers." I would suggest we add "except for people with disabilities" to the end of that statement.

Snow Bound

I tried really hard not to complain this holiday season. I didn't say anything about the stores and all their aisle-way displays making it impossible for a wheelchair user to shop. I haven't written any blog posts about all the people who seem bothered when I ask them to move just a bit so I can get Ashley's wheelchair around them, or the people in their cars who seem impatient as I load her wheelchair into the car.

But now I have to say something. Yesterday, after being stuck in the house because of an historic East Coast snow storm, we finally dug out and decided to go to the mall. As you probably know, the malls always have their parking lots clear before any other business, and that was especially true this last weekend before Christmas.

So, our road had been scraped, my boys had cleared the driveway, and we headed out. This is what we found when we arrived at the shopping mall:



Apparently people with disabilities should stay home when it snows. And for the record, I saw NO regular parking spots that had been blocked by snow. 4000 clear parking spots, and 4 clear handicapped parking spots. It's really too bad because I had quite a lot of shopping to do....and quite a lot of money to spend.

Today I am thankful for those people who believe in community and inclusion.

Teacher - No. Bigot - Yes

I went to the movies with Amy Friday night. She and I and about 300 squealing teenage girls watched New Moon. The movie was good but what happened before the movie was more interesting.

We arrived at the theatre almost an hour and a half before the start of the movie. Already a line had formed, and about 50 people stood in line before us. Soon after we joined the line, an older woman and her teenage daughter stepped behind us. The daughter was a whiner extraordinare, and the mother was one of those people who felt compelled to talk to everyone, stranger or not.

It didn’t take long for us to learn that the mother was a special education teacher in an elementary school in our school district. Amy shared that she also taught special ed, but in middle school. The mother immediately said she didn’t know how Amy did it, that the young kids were hard enough.

The woman then shared that she taught in the preschool special education program. In our school district that means that children with all types of special needs would be in her classroom, and all would be under the age of 5, kindergarten age.

We heard how difficult her job was – how tired she was at the end of the day – how ‘handling’ the kids was really tough. Amy commented that she believed in inclusion and that all students should be afforded similar opportunities, not locked away in separate rooms. The woman looked shocked, and said that some of her students would ‘kill’ the ‘regular’ students if they were put together. Again, just for clarification, her students would be age 2.5 to 4 years old.

I said nothing. I had to choose that option because otherwise I would have made quite a scene.

Anyone who has read my blog for a while knows how I feel about labeling students, having low expectations for those students, and especially how I feel about some of the so-called teachers in my school district. I had to keep quiet because otherwise I would have begun a conversation that would have made everyone around us uncomfortable.

I kept my anger at bay, but sadness consumed me – sadness that children at such a young age are already having their futures determined by people who don’t understand, who don’t care, and who, in my opinion, don’t matter. Yet those people have our children in their clutches at least six hours a day, 5 days a week.

Today I am grateful that throughout her educational journey, Ashley has had two people who 'get it' - Amy and Mrs. Marsh

Social Services - Part 1

I had to do one of my least favorite things in the world this week – go to our county social services office. Since I am Corey’s legal guardian (he is Native American and his tribe will not agree to an adoption – although they don’t want him either), I have to check in with social services every six months. They like to know that Corey is doing well and that he is still in school (I have to produce his report card each time). Plus, he gets to keep his Medicaid if I make the appointments.

The waiting room at the social services office is usually not a happy place. Many of the folks there are asking for monetary benefits and if things don’t turn out as they expect, they can get really angry. And they don’t mind sharing that anger with everyone within earshot.

I also usually see some young teenage girls – often very young – who are pregnant. I assume they are also there searching for benefits, but it saddens me to see them there alone, and then to imagine what their life and the life of their child will be like.

But my visit this week took the cake. The room was packed. My social worker told me later it has been that way ever since the economy took a nosedive. Into the crowded room walks a late twenty something woman, talking on her cell phone and yelling at the young child trailing behind her. She spots two seats, grabs the child (no more than a year old) by his arm and yanks him into a seat. She takes the other seat, and never once slows her cell phone conversation.

The baby is active – seemingly a typical one year old. He wants to explore – he wants a drink – he wants to be held. He communicates all this by whining through his pacifier and tugging on his mother. She alternates between ignoring him and hitting him.

He has a doughnut hole in his hand that he doesn’t seem to want. He drops it on the floor. The mother swoops it up and stuffs it in his mouth. A one year old….

She yells at him to stop whining. She tells the person on the other end of her phone call that the baby is ‘gonna get a whippin’.

Just as I can’t take anymore, a social worker calls the woman back into the office. The woman again yanks the baby by his arm and drags him along. She isn’t with the social worker more than five minutes, and then I see them leaving – the mother with her phone call reestablished, and the baby trailing behind.

It’s then time for my appointment. I share my observations with the social worker. She shakes her head, and I am left to wonder if anything will be done. I doubt it.

Part 2 tomorrow….

Today I am thankful that I had several wonderful mentors when I first became a mother.

Didn't Anyone Teach You To Not Mess With The Lion Cub?

Here are the facts:

• Since the start of this school year, Ashley has shown up at school with bruises on her arms. She did not have the bruises when she left home.


• Last week, Ashley showed up with a deep scratch above her right eye. She did not have the scratch when she left home.


• Ashley’s teacher and I have discussed the bruises and the scratch via email many times.


• Last Friday, one of the school transportation supervisors called me to ask about the injuries. Please note that I said “called me”. I did not initiate the call.


• That supervisor said she would ‘pull the tape’ from the bus and call me back. When she called me back, she and I tried to figure out a way to get Ashley on another bus, but their and my scheduling just wouldn’t mesh. As an alternative, that supervisor told me she would bring the bus driver and aide in for additional training (which I believe happened earlier this week).


• I have told the bus driver and aide many times that Ashley is deaf and blind. They continue to talk to her and seem to get frustrated when she doesn’t respond or acknowledge.


• Yesterday, the bus driver called another supervisor to report that Ashley got on the bus with a scratch over her right eye, and two black eyes.


• The supervisor that the bus driver contacted then emailed nine other school district staff to relate what the bus driver had said.

Okay, let’s take a closer look at all this. The scratch happened last week but the bus driver reported it yesterday. Ashley did not have black eyes, she has dark circles under her eyes from not sleeping due to nightly seizures.

I wonder why all of a sudden (seemingly after the ‘additional training’) the bus driver felt compelled to do a bruise and scratch check on Ashley. I also wonder why the transportation supervisor he contacted felt compelled to email NINE other people, many of whom don’t know or don’t interact with Ashley. And, just for the record, I was NOT one of the nine.

Fortunately, the assistant principal at Ashley’s school felt it was important to keep me in the loop and did send me a copy of the supervisor’s email.

So, Mr. bus driver and Ms. Transportation supervisor, I’ve tried to play nicely this school year. I’ve tried not to overreact. I’ve been pleasant when all you do is grunt hello when Ashley gets on the bus. I didn’t get angry when you asked me “How well do you communicate with Ashley” twice so far, and then told me “Then tell her to get off the bus when she gets to school”. Unlike some parents, I also have Ashley ready in the morning, usually waiting at the end of the driveway, so your bus schedule won’t fall behind. I’ve explained numerous times how to communicate with Ashley, and shown you some of the key signs you would need. And I’ve told you “Have a good day” every single day when what I was thinking was not so nice. But now it ends.

Up yours and I hope your day sucks.

Today I am thankful for my computer's antivirus software. It saved me this morning...Now, I just wish we had an antivirus program for our bodies. Then we wouldn't have to worry about H1N1.