Prayers Desperately Needed

One of my favorite bloggers, Attila the Mom, needs your prayers desperately. Attila's oldest son, 20-something Big Kid, is teetering on the edge of life and death due to complications from H1N1. Big Kid was healthy - no underlying health conditions. Everyone thought he just had a cold, but in less than 24 hours, the unimaginable happened.

Please take a few moments to read her posts about this, and then please, please keep Big Kid in your prayers.

There are many reasons why I am so desperate to get the H1N1 vaccine for my children, but no reason more compelling than Attila's story..

Hold on, Attila, and know that you and Big Kid are in my thoughts and prayers constantly.

Today I am thankful that Big Kid is fighting hard. Damn you, H1N1

Am I Missing Something?

Although I have pretty much given up on my school district providing an education for Ashley, some of the school staff are trying, and I do appreciate that. At the beginning of this current school year (Ashley's first year in high school), two folks from our state's deafblind project visited the school and did a training for the school staff. I'm really hoping that helped because usually teachers and other staff just don't get the whole deafblind thing.

For example, Ashley's 2nd grade teacher came to an IEP meeting and in all seriousness said, "Ashley is a visual and auditory learner."

Still, I give this year's staff credit for trying harder than staff in the past.

However, one of the things that someone, perhaps the speech therapist, is working on with Ashley is getting her to sign jokes. I'm not sure of the reason why - perhaps to fit in with her peers more or maybe to work on some more signs - I'm just not really sure. But, at the end of the school day, the jokes come home written out on a piece of paper, and attached to the joke paper is a page with pictures of the signs that were used.

This week's joke was, "knock knock - who's there? - train - train who - train makes the flowers grow".

I get it - train - the rain - but let's think about this from Ashley's perspective.

She can't hear - she's deaf. The whole point of the joke is hearing the sound of the word train. So sure, she can sign all the words - but it makes no sense to her.

I wonder if the school staff understands why she is not laughing.

Today I am thankful that tomorrow is Friday :)

Special Exposure Wednesday

It's that time of year again - falling leaves, cooler temps, and trips to the Pumpkin Patch. Look closely and you might see Mickey Mouse!





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

Is Bribery Wrong If It Works?

From the first day Ashley started school almost 12 years ago, she has loved riding the bus. She almost skips out to the bus each morning, and is reluctant to get off each afternoon.

And that reluctance is currently a problem.

The bus ride from high school to home is very short. Ashley is used to longer bus rides, and is somewhat miffed at the short ride. So her strategy is to not get up out of her seat and get off the bus. Maybe she’s hoping no one will notice.

Understandably, the bus drivers get a little impatient with her. They have a schedule to keep, and I know the parents of the other children on the bus will worry if the bus is late. So, since asking Ashley nicely to get off the bus and then using the ‘mom voice’ to demand she get off the bus wasn’t working, I had to come up with another strategy. Enter the ‘Bus Bribe Box’.



I had the idea that perhaps Ashley could be lured (bribed) to stand up and get off the bus if an interesting object, an object I thought she would really like, was dangled in front of her. It has worked like a charm!

So each afternoon, Miss Amy (Ashley’s intervener) selects an object from the “Bus Bribe Box" and heads to meet Ashley’s bus. Whether it is the object itself or just that it is something ‘new’, it doesn’t matter. It is working and working well!

There is a time and a place for bribery!

Today I am thankful for Ashley's new wheelchair. Thank you adoption agency for subsidizing her new 'ride'!

Paranoid Momma

I had to take Ashley to the doctor yesterday. I didn’t know if she had the flu or something else, but she definitely needed to be seen. In fact, I probably should have taken her a day or two sooner, but I have an all-consuming fear of doctor’s offices and sick people this year.



I’m sure it’s the H1N1 virus and all the media attention it is garnering. And now the President has declared a state of emergency over the flu. How can a mother not obsess?

Ashley and I both had the seasonal flu last year. She and I both had the seasonal flu shots – like we do every single year – but we still contracted the virus. We both also took Tamiflu, and while it may have lessened the symptoms and duration of the flu, we were still both in bed for a week – not just sitting around feeling miserable – in bed.

I was administering round-the-clock nebulizer treatments to Ashley. She had stopped eating so we had to go back to pushing fluids through her G-tube, and I had to sleep in her room each night just to make sure I heard her still breathing. It was a miserable time and I absolutely do not want to go there again.

This year, however, protection against H1N1 is little more out of my control. Sure, I can insist everyone wash their hands and use hand sanitizer frequently. I can tell them to cough and sneeze into their elbow, and suggest they stay away from obviously sick people. But I can’t get us the H1N1 vaccination. There just isn’t enough to go around.

Why is that? Government agencies have been talking about pandemic flu for a long time. My agency, in fact, has had a pandemic flu plan in place for two years. We knew last Spring that H1N1 was here and would be getting worse. Why didn’t we do something to ensure enough vaccine? I haven’t heard any good answers to that question yet. Have you?

Oh, and for the record, Ashley did not have the flu yesterday. Her test came back negative. She does, however, have a sinus infection, and as far as I know, there are no vaccines for that yet!

Today I am thankful that I was able to borrow another computer. Ashley, you see, doesn't have the H1N1 virus, but apparently my computer does!

Visiting the Cemetery in October

I’m so excited that Ashley is going to the cemetery today for her class’s CBI (Community Based Instruction) trip. I know that sounds strange, but stick with me for a moment and I promise it will make more sense.

I’ve always had a problem with the types of CBI trips set up by Ashley’s special education teachers. The trips were usually of two types – bowling or a trip to the mall. Both those trips could have been structured in such a way that they could be educational, but usually they were not. Especially around the holidays – teachers loved the mall trips so they could get their Christmas shopping done.

However, today’s CBI was to Hollywood Cemetery, a beautiful, very historic place overlooking the James River in Richmond. Hollywood Cemetery is like a living history book. Well, I guess ‘living’ is not quite the right word, but hopefully you get my point.

In 1700, the first person was buried in Hollywood Cemetery. Presidents James Monroe and John Tyler are buried there as are a host of people who played primary roles in the shaping of Virginia and the Southern States. There is a monument to soldiers who died in the Civil War and who are buried nearby. Edgar Allen Poe’s teacher, family dynasties such as the Valentines (patrons of art and music) and the Haxalls (the world’s leading flour millers), philanthropist James Thomas, and university presidents Robert Ryland and George Modlin are all buried in Hollywood Cemetery. Scholars, iron makers, Antebellum editors, Governors and Confederate officers round out some of the historical people buried there.

When Ashley’s IEP team and I were finalizing her IEP for this school year, I remember a statement from one of the school staff when I proposed some history goals for Ashley – “We’re not doing history this year. This is a science year.” I’m not reminding anyone of that statement, but today’s CBI sure seems like a history lesson to me!

Today I am thankful that things don't always turn out as badly as you think they will.

Tell Me Your Secrets

I need to know your secrets – you parents who always have beautiful pictures of your children on your blogs. So many of you have cute pictures of your children looking into the camera, smiling, their hair just so, their clothes clean. How do you do it??

I must have thousands of pictures of Ashley taken over the last 12 years. The only really, really good ones are the ones taken by professionals. But you all post so many candid shots, shots which it appears you have taken in your home, in your yard, on vacation, etc.

And don’t even get me started on school pictures. I buy them every year because I would feel like a bad mother if I didn’t. But almost all of those pictures are ugly – really ugly. Now, Ashley is beautiful but somehow the school photographers turn her image into something not so beautiful.

I’m very grateful for the pictures my brother (a professional photographer) has taken over the years. I’m very grateful for the pictures taken by a friend of Amy’s (also a professional photographer). Two examples are shown below. And I’m very grateful for the pictures that Amy and my son, Chip, take of Ashley. Many of them have turned out well.



But then there are the ones I take, like this one....



Ashley is strangling the cat - the picture is blurry - and a random foot is at the top of the picture.

I really want to be able to create a lovely image of my lovely daughter. So tell me your secrets, please…

Today I am thankful for digital cameras. I can’t even imagine what it would cost to develop the hundreds of pictures I take just to get one or two passable ones.

Special Exposure Wednesday

Reason #87 why Ashley loves her big brother more than anything - he will help her on the computer!



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

Today I am thankful that my son helps me remember to give thanks every day.

Tell It To Me Straight

When one of your child’s doctors needs to share news – significant news – with you, how do you want him/her to do that? What if it is news that most people would consider bad news? What if the news will cause a shift in the universe of your life?

I’ve been pondering these questions myself after reading two articles recently about how doctors should deliver a diagnosis of Down Syndrome. One article from the Journal of American Academy of Pediatrics talks about how best to deliver a postnatal Down Syndrome diagnosis. The other, from the American Journal of Medical Genetics, talks about the same thing, but from the view of a prenatal diagnosis.

Both of the articles depended heavily on surveys of parents, and the number one thing that the parents said? Don’t say, “I’m sorry” or “Unfortunately, I have some bad news to share.”

I thought back to the times when Ashley’s doctors had to deliver significant news to me. First, when she had her second brain tumor removed, I didn’t get “I’m sorry”, but I did get the sad looks and slight head shakes which spoke volumes to me. This was the same doctor who went on to say I ought to place my child in an institution.

Then there was the news that Ashley would have to get a G-tube. The doctor delivering that news was perhaps the most compassionate, loving, intelligent person I have ever met. He was matter-of-fact with the news – he gave me the reasons why and why not – he told me what to expect – he told me how both my life and Ashley’s would change.

And finally, there was the news two summers ago that Ashley’s neurologist had discovered more brain tumors on an MRI he had ordered (at my insistence). He also didn’t say “I’m sorry” or “I’ve got bad news”. He told me the facts – told me to contact the neurosurgeon the next day – and asked me to stay in very close touch with him. The words were right, but the delivery was sad. The sadness and worry in his words sent me over the edge.

If I had to choose, I would take the approach of the second doctor – the one who told me about the G-tube.

I know everyone is different, but I am a person who must be given the facts, and then allowed time to process those facts. I need information on support groups and other parents who may have been through the same thing. I need to reach out when I feel like reaching out, and I need to know where to do that reaching.

But I never want to be told, “I’m sorry.”

How about you?

Today I am thankful that the first doctor I met when I adopted Ashley was Harry Gewanter. He became her advocate and one of my best friends!

In The News

Have you ever stood on a street corner waiting to cross the street and watched one of the new hybrid cars go by? I say ‘watched’ because the hybrids are so quiet that you really can’t hear them as they pass. Now imagine that you are blind. How would you know when it is safe to cross the street? Safety experts and many of the major automakers are working to supply a digitally enhanced ‘vroom’ to hybrids!

If you are a fluent signer and have regular conversations with people who are deaf, you’ve probably noticed that often only a small portion of a sign is all that is needed for your word to be understood. Researchers at Delft University of Technology noticed that same thing and used that knowledge to create ELo – the Electronic Learning Environment for children who are deaf or hard of hearing. The computer program can recognize sign language in real time and can therefore be used to teach children who are deaf or hard of hearing new signs more quickly.

Madonna, must you constantly use the word ‘retarded’? I know you are rich and famous and can do pretty much whatever you want, but I’m sick of your language. You have adopted a child from a developing country and I will give you the benefit of the doubt and assume that you have a bit of compassion and understanding somewhere deep inside. Would you please call that understanding to the forefront every time you feel the urge to use the “R” word? It really doesn’t make you sound cool – it makes you sound crude and insensitive. May I suggest you watch this video produced by ARC of Virginia titled, “Respect.”



Today I am thankful for Sundays - days spent with the family, snuggling with Ashley, and cooking comfort food.

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.

Driving Topless

Got your attention, didn't I?

Same thing happened to me when I saw the title of this news article:

Could Topless Driving Make You Deaf?



Today I am thankful for my new(ish) car. I'm not worrying so much now about breakdowns, but I do miss all the space of my old van.

Special Exposure Wednesday

Yes, we were in the mountains. Yes, there were apples galore, doughnuts, apple cider, apple pie, and freshly made hot meals. But, Ashley's lunch was not complete without her mac and cheese.



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

Harvesting

Saturday was cool and rainy but it was also the day we had scheduled to drive to Carter Mountain Orchard. The apples and pumpkins didn't care about the weather so we didn't either!

Carter Mountain is near Charlottesville, Virginia. It is a family tradition to drive up early in October and stock up on apples and hot apple doughnuts (my primary reason for wanting to go!). Although traffic was heavy in the Charlottesville area due to a University of Virginia football game that day, we arrived early at the orchard and beat most of the crowd.

We first made our way to the pumpkin patch, and Chip and Ashley did a fine job of surveying all the options before making the perfect selection. We then had to explore the colorful gourds and all the varieties of apples before purchasing our dozen warm apple doughnuts. We enjoyed them at a picnic table while listening to a live bluegrass band. The adults in the group even sampled some of the orchard's signature wines.

Finally, we loaded our purchases into the car and started the trip down the mountain. All in all, it was a wonderful start to yet another Autumn!




Today I am thankful for my down comforter. It was nice to snuggle under it last night.

Coming Home

Because of my school district's lackluster performance at including students with disabilities in extracurricular and general education activities, I had pretty much given up on Ashley ever participating in school dances, PTA performances, or school clubs. In fact, the first and last time I did request that Ashley participate was way back in 2004, and it was a total disaster. That story of Ashley's token acceptance into a holiday school performance was what inspired Jonathan Mooney, author of Short Bus Stories - A Journey Beyond Normal, to include Ashley's story in his book.

So here we are many years later, and maybe, just maybe things are different.

Last Friday was Homecoming at Ashley's high school. There was to be a parade before the football game, and Ashley, along with the Circle of Friends club, was invited to participate in the parade. I agreed that Ash could participate, but deep in the pit of my stomach was a worry that once again tokenism would reign over inclusion.

I was wrong.

Ashley was welcomed - her Circle of Friends regular education students included her just as everyone else - disabled or not - was included - and Ashley had a absolute blast!

She showed up in her wheelchair decorated with ribbons in the school colors. She wore clothes in the school colors, and her smile rivaled even the cheerleader's smiles.

She lined up with the other students. She 'listened' to the band practicing right beside her. She clapped and hooted, and she walked around the entire football field with her peers.

The world shifted that evening, and I hope it never goes back.



Today I am thankful for a day off from work - a day when the laundry is done and the house is clean - a true day off!

Black and Blue

Ashley bruises easily due to one of her seizure meds. But, when she comes home from school with large, very black and blue bruises, I do have to wonder what happened.

I’m quite familiar with the types of bruises that are accidents on Ashley’s part – running into things, for example. Those things are expected due to her blindness. But, the perfect shape of fingertip bruises on her upper arm, or the large bruise on her wrist are more than likely not due to accidents.

One of Ashley’s teacher and I have been discussing this for a while now. I'm very lucky this year that this particular teacher is a very caring and concerned person, a parent herself of a child with a disability. So, when she sees a bruise, a scratch, anything out of the ordinary, she calls me. We both feel that the bruises we are seeing are happening on the school bus.

And that must be why I received a phone call today from Central Office Transportation. I believe Ashley’s teacher contacted them. The bus staff doesn’t sign – they probably don’t recognize when Ashley is having a seizure –and they don’t appear to understand that transitions are difficult for a child with special needs. As a result, there is a lot of pulling and tugging to get Ashley off the bus.

The transportation person was very professional and very concerned. In fact, many years ago, she used to be Ashley’s bus driver, and still has a fondness for my lovely daughter. She asked me – really asked me – what I felt was happening. She told me she would be pulling the video tapes from the bus to see if she could spot anything. She told me that if training was needed for the bus staff, she would make it happen.

That conversation was one of the most positive I have ever had with a school district employee.

So, even though I don’t have any answers yet about the source of the bruises, I believe I will have answers very soon. Kudos to both Ashley’s teacher and the transportation person. You are both the type of people who make me want to send Ashley to school each day.

Today I am thankful for the upcoming three day weekend. I'm hoping the rain will pass quickly tomorrow morning so we can go apple picking.

Will A Grassroots Movement Work?

The Virginia Alliance for Community today called on all candidates for statewide office and House of Delegates to adopt a “Community for All” platform that reforms Virginia’s system of supports for persons with intellectual and other developmental disabilities. The Alliance -- formed in 2008 by the Virginia Board for People with Disabilities, the Partnership for People with Disabilities, the Virginia Office for Protection and Advocacy, and The Arc of Virginia -- provides a unified voice in advocating for the civil rights and needed services for Virginians with intellectual and other developmental disabilities.



What’s the Problem?

--- Virginia continues to inappropriately segregate persons with intellectual and other disabilities in expensive state institutions (Training Centers).

--- Training Center costs continue to rise and have now reached an average of $194,000 a person a year at the state institutions.

--- Community care through the ID/MR waiver for persons living in congregate settings, primarily waiver group homes, costs $95,000 per person annually -- half the cost of institutional care for individuals with equivalent levels of need.

--- Virginia is one of only 10 states that have not closed any state operated institutions for persons with intellectual and other developmental disabilities. Eleven states have already closed all of their state-operated institutions.

--- Training Centers are old and in growing need of major repairs -- the “youngest” buildings at NVTC and SWVTC are already over 30 years old. Residential buildings at CVTC, SEVTC and SVTC are much older.

--- The potential costs to rebuild or renovate all five state Training Centers would well exceed $100 million dollars, which is unjustifiable, particularly in a period of limited state revenues.

--- Spending scarce state dollars to rebuild and operate state institutions means fewer dollars available in the future to address the state’s growing waiting lists for the ID and DD waivers -- well over 5,000 persons are already waiting.

--- There are now 17,000 individuals with ID or DD living at home with parents 60 years or older. These individuals will want and will need community supports as their caregivers die or can no longer provided needed care

--- Continued maintenance of large state Training Centers runs counter to the service design both desired by individuals with ID/DD and being pursued by the Commonwealth. Through its System Transformation Grant and Money Follows the Person initiative, Virginia is making great strides to develop an ID/DD service system that is person-centered and promotes community integration.

It is NOT reasonable to segregate people in institutions when experience and research prove that even people with significant disabilities and intensive needs can be supported in the community.

It is NOT reasonable to continue to invest scarce public dollars operating large, inefficient state institutions when there is a better way.

It is NOT reasonable to deny persons with disabilities the right to live among us in the community if needed supports are provided.

What’s the Solution?

--- Commit to transition Virginia’s segregated, institutional system by adopting “Community for All” policy.

--- Halt future plans to rebuild state Training Centers. Virginians with the most significant disabilities can -- and do -- live in their own community homes when appropriate supports are available to them. Capital outlays can be leveraged with community housing money to significantly expand available, limited state dollars.

--- Consider the fiscal reality. Is it the best use of limited resources to spend $194,000 to support an individual in a state operated institution when individuals with like needs are being supported in the community for half that cost?

--- Make a true long-term commitment to eliminating waiting lists for waivers and other supports by developing and adopting a reform plan that transitions Virginia from its inefficient institutions to innovative, person-centered supports in the community.

Now is the time for disability reform in Virginia. It is no longer morally or fiscally responsible to invest in segregated settings for our citizens with disabilities. As friends, neighbors, self-advocates, and taxpayers, we ask all state level candidates -- gubernatorial and legislative -- to end this segregation and make community living for all Virginians with disabilities a priority in their campaigns as well as in their legislative initiatives.

Today I am thankful that I have the resources to provide a home for my children, a real home - not an institution.

Special Exposure Wednesday

I know, my sweet girl...I'm sad also that all the Krispy Kreme doughnuts are gone. But the good news is that I have a coupon for $2 off another dozen!!



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

Today I am very thankful that I live in a city where I can get Krispy Kreme Doughnuts!

Disability Doesn't Equate With Inability

That statement in the title of this post was made by Nancy Starnes, director of external affairs for the Washington-based National Organization on Disability upon hearing that a statue honoring Helen Keller would be placed in the U.S. Capitol's National Statuary Hall.

According to the Alabama Governor's office, a statue commemorating Keller's 1887 communication breakthrough (her "w-a-t-e-r" moment) will be the first statue in the Capitol of a person with a disability, as well as the first of a child.

Also according to the Governor of Alabama, the statue will show there are "no limits to what people can accomplish".

Hear, hear!

Check out the full story on CNN.

Today I am thankful for the adoption support group I will attend this evening.

A Study In Contrasts

Today I’m spotlighting two very different videos on the subject of Autism. The first is titled "I Am Autism.” It is a video by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann, debuted on September 22, 2009 at Autism Speaks' Second Annual World Focus on Autism .

The second is titled “New Day New Opportunity” and features Drew, a young adult with Autism. It was produced by the ARC of Indiana.

Tell me what your thoughts and then I'll tell you mine...

And Then What?

Two different people asked me last week whether I intend for Ashley to stay in school until she reaches her 23rd birthday (which is allowed under IDEIA), or if I will let her graduate with her class. Since Ashley started high school this year, perhaps I really should have an answer to that question, but I don’t.

Those of you with young children with special needs probably haven’t given much thought to the age at which your child will leave school. I know I didn’t. That time just always seemed so far away, something I didn’t need to think about. But with Ashley in high school this year, should I have an answer??

My first thought is yes, Ashley will stay until her 23rd birthday because the more education she gets, the better. But then I tell myself that for the most part she isn’t getting an education in our school district. Her real education comes from homeschooling after school and on the weekends. So if that is the case, what’s the point of her staying in school. It’s not like she is going to get a standard diploma if she hangs around. In my state, she will get a ‘certificate’ of completion, and she can get that with four years of high school or with 7 years of high school.

Of course, whenever she leaves school, there must be a plan for the next years. Where will she work? Where will she live? How will she connect with people? Who will be her ‘community’? There is so much planning and so many supports to be put in place for the post-high school years, that it seems very overhelming.

I honestly don’t know how to approach this whole issue. If any of you have older children, and have faced this issue, I would love to hear what your decisions were and how you helped your older child move to the next phase of their life.

Today I am thankful for our pediatrician’s office which has office hours for sick children seven days a week.

The Seizure Express

Ashley had an appointment with her neurologist yesterday. And unlike many of our specialist appointments, we didn’t have to wait long. In fact, we were the only people in the waiting room. Once in the exam room, Ashley was happy and quite thrilled that I kept giving her sparkly hand lotion. The doctor and I were able to talk, and plan for Ashley’s next six months. All in all, a good time was had by all – except for the fact that Ashley’s seizures are less controlled now than ever.

Early in life, Ashley had what were then termed grand mal seizures. Very, very scary, yet almost completely controlled by one medication. Then puberty approached and the world shifted in many ways, including many more seizures.

The new seizures were different – not grand mal but still just as scary. At the worst, she would have 10-12 a day, and often they would cause her to vomit or cry uncontrollably. But the neurologist rode in to the rescue, and several new meds later, Ash is down to 3-5 less severe seizures each day.

Then about a month ago, a new type of seizure emerged. The previous ones were still there, but now right after waking and just before bed, Ashley will have clusters of myoclonic seizures – a series of brief, jerky movements.

According to epilepsy.com, myoclonic seizures occur in a variety of epilepsy conditions, including:

• Juvenile myoclonic epilepsy: The seizures usually involve the neck, shoulders, and upper arms. In many patients the seizures most often occur soon after waking up. They usually begin around puberty or sometimes in early adulthood in people with a normal range of intelligence. In most cases, these seizures can be well controlled with medication but it must be continued throughout life.

• Lennox-Gastaut syndrome: This is an uncommon syndrome that usually includes other types of seizures as well. It begins in early childhood. The myoclonic seizures usually involve the neck, shoulders, upper arms, and often the face. They may be quite strong and are difficult to control.

• Progressive myoclonic epilepsy: The rare syndromes in this category feature a combination of myoclonic seizures and tonic-clonic seizures. Treatment is usually not successful for very long, as the patient deteriorates over time.

Ashley’s neurologist believes hers are the juvenile myoclonic epilepsy type. What that translates to practically is that we must increase some of her seizure meds.

I had wanted to work on decreasing meds – perhaps even eliminating some. She is currently take 4 medications at a pretty high dose, and now we are going to increase one of those.

The good news is that the new seizures don’t seem to bother Ashley, and they don’t last long when they are happening. She is still my wild and crazy and very loving teenager, and when she smiles at me, seizures and medicine are the last thing on my mind!

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Today I am thankful that my state government has provided counselors throughout the day for anyone who knew Lou or who witnessed her accident or who just wants to talk. They didn’t have to do it, but doing so is a wonderful gesture, and I applaud them.

Thankful Thursday

Loucendia, a state employee like me and a participant on the same deafblind advisory council that I am on, awoke yesterday morning and prepared to report for work. Like me, she probably got herself ready, attended to her family – making lunches and breakfast – making sure everyone was good to go for the day – and then she made the drive to our downtown area. She parked in the newest of our state-owned parking decks, and began the walk to her office building, one building over from mine. The walk is one that hundreds of state employees make each day, but it is also one that requires crossing a very busy street in them middle of rush hour.

As Lou attempted to cross the street, a crossing marked by the flashing “WALK” sign as safe for a pedestrian, she was struck by a city transit bus and was killed.

The investigation is still continuing, and no answers have yet been given for this horrible tragedy. It weighs so very heavily on my mind and in my heart, and has made this Thankful Thursday post extremely significant for me.

Today, a day for which none of us have any promises, a day which could have started as inconsequential as Lou’s probably did yesterday, a day which could bring unheralded tragedy, is a day I am driven to give even stronger thanks than usual. And, as a direct result of the tragic end to Lou’s life, I have decided to take a different approach to giving thanks publicly on this blog.

I will not be posting Thankful Thursday after today. What I will be doing is making a statement at the end of every blog post that I write – a statement of thanks for whatever stirs in my heart at that moment. I have decided that giving thanks publicly should be a daily proclamation, and not confined to just one day a week.

Today, I am thankful…

• for the smile on Ashley’s face this morning when I woke her and she looked into my eyes


• that my adult son still comes into my bedroom each night and signs “I love you” before he goes to sleep


• that Jessica calls me every night, even if it just to tell me what she had for dinner


• that Corey is healthy and happy, and that his life is not the hell it was for the first 12 years of living


• for my brother and his beautiful daughter, Melody


• for my special friends – friends who are just a call or glance away – friends who understand me and still like me – friends like Lynnette, Amy, Jackie, Sharon, Mike and Don


• for people like Lou, people who choose to make a difference for children


• for the material blessings in my life – a home, three meals a day, healthcare, and a job that allows me to provide for my children


• and for the ability and rights that I enjoy, including writing this blog

Rest in peace, Lou.