The Good News

Today I decided to share several 'good news' stories. Monday, the story will not be so good. So enjoy today!!

This first video comes from my blogger friend, Esbee, at Life In Forsyth. Like her, I am used to seeing one interpreter in church, but nothing like this - a CHOIR of signers!



The next story comes from my own home town. As I mentioned in this past Monday's blog, the circus was in town. One morning, prior to the first show of the day, the circus folks invited children with visual impairments for a 'touch tour'. Read the story and watch the video linked below, and you will see what the tour meant for the children!

A Big Top With A Big Heart

And finally, have you heard of the Grottoes? Here is an excerpt from their website:

The Grottoes of North America Humanitarian Foundation is a 501 (c) (3) nonprofit organization to help bring "Special Smiles" to children with special needs by providing much-needed dental care for them. The program helps cover the costs of dental treatment, including hospital and anesthesia costs when needed, for children with Cerebral Palsy, Muscular Dystrophy (and related neuromuscular disorders), Organ Transplant recipients or those with Mental Retardation.

Even if your child has dental insurance, the program can act as a second insurance, often picking up co-pays or other expenses not covered by your primary insurance.

Check out the contact page, select your state from the drop down box and you can see if there is a representative in your area. But even if there isn’t, this organization can assist, and their website will tell you how.

I hope you have a great weekend and find more 'good news' along the way.

Thankful Thursday

My Thankful Thursday post is late going up today. Why? I’m having a tough time concentrating on ‘thankful’ instead of ‘frustrated’.

I’m frustrated with my job – way too much to do in way too little time, and unfortunately the way too much to do keeps growing. I need a balance in my life and finding that balance in light of the ever growing workload is difficult.

I’m frustrated with our foster care system where decisions impacting the future of a small child are made by people who have never been parents and who have little to no clue about advocacy, medical issues, or support systems that have been present in society for more years than I have been alive (and that’s a lot of years!).

I’m frustrated with a school system that really doesn’t care no matter what flowery words they use in their mission statement. I’m frustrated that the same battles happen every single year.

But, I’m trying to convince myself that on a day like today, one filled to the brim of my soul with frustration, is exactly the kind of day where I need to list things for which I am thankful. So, for what it’s worth, here goes. Today I am thankful…

• For French fries loaded with salt and pepper


• For the warm, snuggly, cocoon-like feeling I experience each morning before having to drag myself out of bed


• For Miss Amy and all her wonderful ideas on how to put fun into Ashley’s life


• For children who smile at me as they walk past holding their parent’s hand


• For the gentle feel of Ashley’s hands on my cheeks as she moves my face to be inches away from hers


• For drivers who are polite and not impatient


• That Jessica will be coming home for a visit this Saturday


• That my son, Chip, smiled and asked me if I had a nice nap when I fell asleep on the couch last night watching TV


• For the blooms just starting to erupt on the Camellia bush by my front door


• That my children and I are well and happy almost all the time

Special Exposure Wednesday

This is spirit week at Ashley's school, and yesterday was 'Pairs Day'. The always creative and full of fun Ms. Amy made Flintstone's costume for herself and Ashley. Ashley was Fred and Amy was Wilma! The only sad part about all this??? Some of the middle school students had no idea who Fred and Wilma Flintsone were...




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

Due Process - Part 2

I started my story of due process last week, and this week I will continue. It's surprising to me how relating the story is getting me on edge again. The issue is resolved, but I'm finding the reliving of the process rather difficult...

Filing For Due Process

Deciding to file due process against my school district was not an easy decision to make. I knew that an attorney was likely to cost me a second mortgage on my house. I had heard about the bully school attorney, and how he had reduced other mothers to tears in front of the hearing officer. I read the statistics about how school districts prevail in due process 98% of the time. And I knew that trying to fight another, really big, battle along with being a single parent to four children (and three of those with disabilities), a full-time computer engineer and maintaining my various commitments to boards and advisory councils was going to be tough. But I didn’t realize just how tough.

I contacted my state’s protection and advocacy organization – called the Virginia Office for Protection and Advocacy (VOPA). They reviewed the issues and decided to take the case at no charge. And while I knew the school district attorney was a bully, I have never met a stronger, more committed, more intelligent attorney that my VOPA attorney.

Jonathan, the VOPA attorney, filed the necessary paperwork to initiate due process and told me to be strong. A hearing officer was assigned, and the attorneys and the hearing officer began to talk. Mediation was suggested as a first step. I had very little hope that mediation would result in anything meaningful because I felt like all the steps leading to due process had been mediation. But, I went through the motions.

The mediation meeting was held the school district central offices (home team advantage, perhaps they were thinking). The director of special education, a very disingenuous woman with whom I had spoken too many times to count, was there along with two other ‘specialists’. The meeting was facilitated by the mediator, an older woman supposedly trained to keep blood from flowing between the parties.

I talked – they talked – we got nowhere. Since attorneys cannot attend a mediation meeting, every so often I would excuse myself and go to another room to discuss with my attorney the progress (?) we were making. I tried to play nicely – I tried to find a common ground – I really did. But the school district representatives refused to budge and kept checking their watches as if they had more important things to do. After three hours, the mediator declared the game over.

The next three or four weeks leading up to the actual hearing were spent collecting and organizing documentation, consulting with the ‘expert’ we hired for our evaluation, and practicing the actual cross examination. My attorney knew the school district attorney was going to go after me with a vengeance, so he went after me with a vengeance first, toughening me up for the hearing. I also spent some time googling the hearing officer’s name. That may sound like a strange thing to do, but there was a method to my madness.

I wanted to know what type of person the hearing officer was. I wanted to know if he had definite views on certain subjects – subjects I should either avoid or mention. I wanted to know how many due process cases he had presided over and how he had decided. I wanted to get inside his head to see if I could then get him inside mine at the hearing.

I found out one interesting fact with my googling. Mr. Hearing Officer was a regular contributor to the adoption agency that had placed Ashley in my home. Knowing that, I bet that it would be a good thing to share with Mr. Hearing Officer that I had adopted both Ashley and my oldest daughter through that agency. Would it help at all? I had no idea, but I figured it wouldn’t hurt.

The week before the hearing, I don’t think I got more than a couple of hours sleep each night. I kept practicing over and over in my mind how I would respond to the school district attorney, and how I would maintain self-control and not let him get to me. I’m not a drinking woman, but that week I rethought that stance….

I didn’t realize this story was going to be so long. I thought I could tell it in three installments, but that doesn’t seem to be working. This has gone too long already, so part three will be next week….

The Greatest Show On Earth

Elephants and tigers and horses and dogs – clowns and sky fliers and rockets shooting people – bright lights and shiny clothes and music so loud you could feel it…Yep, we went to the circus Saturday morning and it was a wonderful sensory experience for Ashley!

I had never taken Ashley to the circus before because I wasn’t sure she would enjoy it, but circuses have really changed since I was a child. It was almost more of a stage show than anything else. I was wrong to thing Ashley would be overwhelmed. I don’t think she ever stopped smiling the entire two hours.

When I decided to try the circus this year, I contacted the Coliseum (our city’s venues for shows such as this) and asked about accessibility. My call was returned by a special lady named Joanne who went out of her way to make things work for Ashley and her wheelchair.

We had three great seats only about 6 feet from the ring. The seats were on a raised platform, so there was no problem with people sitting in front of Ashley and blocking her view. We were the only people on the platform which meant Ashley did not have to deal with her anxiety that comes with crowds of people.

Before the show, children were invited down to the ring to meet the performers. I couldn’t get Ash’s wheelchair down to the ring, but that didn’t stop the performers from coming to her. Every last one of them was pleasant and eager to meet Ashley and have their picture taken with her.

Once the show started, the next two hours passed by in a flash of lights, music, smoke, and pure entertainment! I just have to say it again – the circus of today is nothing like the circus of my childhood! We will go again and again – anytime Ringling Brothers comes to town!!

This and That - Good and Bad

Chip’s Dream

Chip, my birth son and my oldest child, got an acceptance letter in the mail yesterday from his first choice college. To say he is excited is an understatement. And, I hated to dampen that spirit, but unless RIT (Rochester Institute of Technology) comes through with a significant financial aid package, he won’t be able to go. Each year at RIT costs $37,000!!



I think Chip deserves this so much. He has shared his Mom with three adopted siblings with significant disabilities since he was five years old. He has always been supportive, caring, and understanding. He has seen his wants and needs often pushed aside to meet the needs and wants of his siblings. He has had his whole life turned upside down by the decisions I have made for our family, and more than anything, I wish I could make his dream a reality.

No More Bird Music

Back in March of 2007, I wrote about how excited I was when Ashley signed that she could hear the ‘bird music’ (birds singing). Given her hearing impairment, I was both surprised and thrilled.



This past Monday Ashley had another hearing evaluation. Previously, her right ear was evaluated as having a profound loss, and her left with a moderate loss. Monday’s results showed what I already knew – her little bit of hearing was deteriorating. The new evaluation continues to show a profound loss in the right ear, but the left ear now measures as severe to profound.

While we waited for the school bus yesterday morning, the birds were singing very, very loudly. I asked her if she could hear the ‘bird music’. She signed ‘no’….

Thankful Thursday

Today I am thankful...

• that the cortisone shot my orthopedist gave me in my elbow 4 weeks ago is still working


• that my oldest son and I finally finished his FAFSA application for his college choices


• that even though there were four accidents on the freeway on my way to work this morning, I still wasn't late


• that I have learned to accept the fact that no matter how concientious I am, an auditor will always be able to find something that doesn't pass muster


• for the snow shower we had yesterday morning. We have yet to have any significant snow this year, and I really miss it.


• that I am not alone in my anger over the way my school district conducts its special education business


• that Ashley's audiology appointment went well this past Monday. The tiny bit of hearing she had in just one ear has deteriorated, but she doesn't seem to care. She signed to the audiologist that 'deaf ok'.


• that Tatiana del Tora got eliminated on American Idol last night - what a basket case that young lady was!


• that even though I missed our snow this year, Spring is just around the corner - I need some sun and warmth


• that tomorrow is Friday and on Saturday we will be visiting elephants at the circus!

Special Exposure Wednesday

Even though Ashley is blind, she produces some amazing art work. And, like any other child, she loves to have that artwork displayed. So, we put up a cord that runs the length of her room and hang her artwork with clothes pins. She loves it, and is quick to point it out for everyone to see!



Make sure to stop by 5 Minutes for Special Needs and see the other great Special Exposure Wednesday shots!

Due Process - Part One

Amazing Grace left a comment on one of my posts last week saying she would like to hear about the due process case I filed against my school district. I learned a lot during the case, and I believe what I learned may help other parents facing similar problems with their school districts. So, I am going to do a series of posts. The first will address what things led up to my filing suit. In the second post I will talk about the actual due process hearing, and in the third, I’ll share what life post-due process has been like.

The posts may be long so I will spread them over three weeks, with the first one being today.

THE PATH TO DUE PROCESS

Ashley started school when she was just 2 ½ years old. I adopted when she was 2 years old and immediately began early intervention services specifically to address her diagnosis of deafblindness. The early intervention staff suggested after 6 months that Ashley was probably ready for school and a more challenging environment. I agreed, and our first IEP meeting was held.

Ashley spent her school years leading up to kindergarten in a preschool class designed specifically for children with hearing impairments. Sign language was used by teachers and students alike, and I believe that was the reason Ashley’s love of sign language blossomed.

Just as Ashley was going into kindergarten, my school district made the decision to take a fully oral approach to hearing impairments. Sign language classes were disbanded and children without cochlear implants were moved to general special education classes. Unfortunately in the general classes, sign language was a rare commodity, and I had to start supplementing Ashley’s school day with home schooling each evening and on the weekends.

About the same time the sign language classes were disbanded, my school district also decided to cut back on ESY (Extended School Year) services. Where once Ashley had gone to school year round – summer and all breaks included – every new IEP brought arguments and reduced services. I saw those reduced services take their toll on Ashley’s progress and my home school efforts had to be increased. That increase was difficult given the fact that I am a single parent and I have to work full time. It was also tough on Ashley to have to concentrate so many hours each day on school work, but it was the only way I could ensure her progress.

Finally, when Ashley was in 4th grade, the school district wanted to suspend all summer and winter and spring break services. I knew I couldn’t make up all that lost time for Ashley, and began talking to an attorney.

The first thing the attorney had me do was to ask the school for an independent evaluation of Ashley. The evaluations done by the school district had been slanted towards the outcome they wanted, i.e. extra services were not needed. It took months – almost half a school year – for the school district to agree, but they finally did. They located a person who had experience in deafblindness and contracted with him to do an evaluation.

Although the evaluator’s skills in the area of deafblindness seemed a little dated to me, he did a pretty good evaluation. His recommendation to the school district – increase sign language skills and provide year-round schooling. The school district then spent the next two months arguing with the evaluator that they had found and hired.

In the meantime, my attorney and I decided we would get our own evaluation. We brought in the most experienced, most published, most well respected expert in deafblindness in the U.S. It cost an outrageous amount, but we felt it was the only way to ensure a fair, good evaluation, and our key to obtaining the services we believed Ashley needed.

Again, the school district scoffed at the expert’s evaluation and recommendations. They dug in their heels, and pronounced that there would be no summer, winter break or spring break services. My only option at that point was to file due process.

Coming in the next week’s installment – THE DUE PROCESS HEARING

Proving

Ashley had an apointment with her audiologist today for a hearing test. It's always seemed a little strange to me that a deaf child had to have a hearing test, but apparently my school district needs to see in black and white numbers and symbols to believe she really can't hear.

The appointment went well. It had been two and a half years since Ashley's last hearing test, but she went right into the booth without hesitation, and never complained when the audiologist put the two little probes into her ears. She then cooperated for about 20 minutes while the test took place.

I knew things weren't good when I could hear the tones (I was in the booth with Ashley) while not having the probes in my ears, yet Ashley couldn't. So it was no surprise when I saw the final audiogram and it revealed that there had been a progressive loss since the last test.

Ashley now has the official numbers to prove she has a profound hearing loss in her right ear and a severe loss in her left. I hope my school district is happy.

While going through the test with Ashley today, I was thinking about last night's Amazing Race show on TV. This season's show has a mother and son team, and the son is deaf. And like Ashley, the son felt he needed to prove something.

The young man and his mother were the first to reach the destination point, which, although I have not watched the show in the past, I could figure out was a good thing. The young man was so excited! When the host asked (in sign language - good job, host!) why winning meant so much to him, the young man said he needed to prove that Deaf were capable people.

So when you are deaf, sometimes you have to prove you really are deaf, and sometimes you have to prove that you are still capable. I just have one question - Why do you have to prove anything to anybody? Needless to say, this whole subject has struck a nerve with me...

Listen To The Voices

What an incredible project! Last summer, the Allegheny County, Pennsylvania Department of Human Services Disability Connection undertook a project called Voices of Our Region.

From their Voices website…

"Voices of Our Region is an oral documentary capturing the life, love and passion of area residents living with disabilities. Audio interviews with 57 individuals with disabilities of all types across generations and culture comprise Voices of Our Region. The six-hour oral history encourages listeners to learn about both the struggles and triumphs individuals with disabilities have experienced in seeking self-determination and non-discrimination by providing candid, non-scripted stories of the progress made in pursuit of personal goals".

Can you imagine how wondrous it would be if such a project could be undertaken in each of our communities???

Thankful Thursday on Wednesday

Today I am thankful for the Virginia Board for People with Disabilities and their new campaign...

Today, in my state (Virginia), people are making a difference for Virginians with disabilities. Today, is the official launch of the ABLE TO CHOOSE public awareness campaign.

“The ABLE TO CHOOSE campaign invites Virginians to join in making all aspects of community life inclusive and welcoming to people with disabilities,” said Heidi Lawyer, Executive Director of the Virginia Board for People with Disabilities (VBPD).

“The Commonwealth has a promising opportunity to reform its historical focus on large state institutions and fully transition to a true community-based system of support for its citizens with disabilities, said 83% of Virginians in a recent poll funded in part by VBPD as part of the planning for ABLE TO CHOOSE.”

The campaign’s launch will take place at the Virginia General Assembly. Lawmakers, in town for 2 months, were offered coffee at 8am this morning, but they had only one choice – black coffee, no cream, no sugar, and no lattes. This lack of choice was intended as a friendly reminder that everyday options for person with disabilities in Virginia are still limited. The campaign asks legislators and the general public to imagine how they’s feel if they visited a coffee shop or restaurant and were offered few choices. This unimaginable situation, involving something as simple as coffee, represents the reality for many people with disabilities who have limited choiced in more important matters such as where they live and the services that they receive.

Lunch will also be offered to legislators, consisting of a menu with only one choice – item #46 – to represent Virginia’s standing as 46th among all states for community-based services for people with disabilities.

Over the next year, this outreach effort will continue, with Virginians taking part in community events, press coverage, public service announcements, online activity, educational material distribution, and other activities to motivate the community to become more involved in guaranteeing civil rights and equal opportunity.

I’m very excited about this campaign and will share more information about it as the year progresses. In the meantime, please take a moment to view this video:

Special Exposure Wednesday

Mrs. Ortiz? Mrs. Ashley Ortiz? Justin and Ashley Ortiz?

Ashley received her first proposal yesterday at school. One of her classmates, a young man who has been in school with her for several years now and who has always 'taken care' of his girl, Ashley, yesterday took the name cards that they have and put Ashley's first name card with his last name card - Ashley Ortiz!!

I was just trying to figure out how to keep Ashley awake so she could go to the eighth grade dance with Justin, and here he is already proposing!



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

Ashley, Through The Years

I spent a couple of hours this past Sunday looking at all the video tape recordings I have of Ashley from the time I adopted her. Many of the recordings were done by hospital therapists, during her time in the feeding program at our local children’s hospital or during outpatient speech, occupational or physical therapy. Others were done at school, though most of those were from Ashley’s preschool or early elementary school years. My school district stopped wanting to videotape Ashley after I won due process when Ashley was in 4th grade when one of their tapes was used to reflect negatively on their level of service. And then a few more recordings were ones I did at home – most often to prove that Ashley had a specific skill.

While it was very touching to watch Ashley through the years – little Ashley with a huge smile on her face as she disembarked from the school bus to slightly older Ashley fighting with her feeding therapist over ‘lumpy’ food to elementary school Ashley proving she could sign sentences when the school district said she couldn’t – the tapes of Ashley in school made me angry.

I asked myself the same questions I asked during the filming. Why do I have to prove that Ashley knows her ABCs? Why do I have to videotape her identifying every state in the United States? Why did I have to prove that she knew beginning in first grade what a rhombus and a parallelogram were? I didn’t have good answers then and I don’t have good answers now although I still find myself having to prove Ashley possesses academic skills.

I’m converting the videos to digital format because I am using them in a class I am teaching at our local university. The class is part of the Severe Disabilities Consortium which is composed of courses for teachers who are pursuing certification to teach children with severe disabilities.

So maybe the real reason I have all these videos was not to fight my school district through the years, but rather to help new severe disabilities teachers have a more open and positive attitude when they return to their classrooms.

I really do hope Ashley’s story can have a positive impact of other teachers and other children.

Where?

While I was out running errands this past weekend, something struck me as strange. I didn't see any adults with disabilities. In fact, as I thought back over the many errands I have run in the past year, I realized that I almost never see an adult with disabilities in my community.

I see lots of children with disabilities, and even a few teenagers. They are usually with their parents, and never with a group of other children.

I have seen one group of adults with obvious cognitive disabilities having lunch at one of our local malls. The adults, 5 of them, were with caregivers - women who appeared to me to be group home staff. The adults didn't seem to care that they were in the community - they were just doing as their carers directed. None of the adults looked happy.

So where are the adults with disabilities? I live in a medium-sized city, a city which is the capital of our state. I am in many different stores and community locations, places like grocery stores, malls, Target, WalMart, the library, and many medical facilities. I don't know why I haven't noticed before, but this weekend it was like I woke up to the fact that there were no adults with disabilities in my community.

Why is that? Our school systems spend most of the educational time supposedly preparing our children with cognitive disabilities for as independent a life as possible. I know for a fact that our schools take the children to the mall and grocery store multiple times each school year. I am told it is to help prepare the children for adulthood.

So what's happening? Are our school systems failing in their preparation? Are our other support organizations not achieving their goals of making communities inclusive? Are parents not doing their part to prepare their children? Have the parents of the adults with cognitive disabilities passed away and the adults are now lost - unable to function in the community?

This situation saddens me and frightens me. Will society not include my children as adults? Am I doing enough - to ready my children and to ready my community?

I'm very worried.

Carol Saylor

Carol Saylor is an artist, and she is deafblind. My Ashley is also an artist, and I love hearing Mrs. Saylor describe what it is like to create beauty with her hands because it gives me some insight into what Ashley is experiencing.

Take a few minutes to watch the video below of Mrs. Saylor, and I am sure you will be touched just as I was. And to see some of her beautiful work, check out her website.

Thankful Thursday

Today I am thankful...

• that Ashley and I survived a bout of the flu. I haven't seen Ashley that sick in many years and it was extremely scary.


• for really good books - ones that I enjoy reading so much that I try to read slowly so they won't end. I'm reading one now titled "Scarpetta".


• for Dr. Wright at my children's pediatrician's office. Dr. Wright is wonderful with Ashley. She touches her gently to let her know she is in the room. She indicates to Ashley just what she is going to do by lightly touching the area she is going to be examining. And one of the things that impressed me the most was how she just sat and looked intently at Ashley. She said a doctor could get a pretty good reading on how sick a child was by just watching quietly for a few moments. Thank you, Dr. Wright


• for my inhaler. I have needed it a lot this past week.


• for pharmacies that deliver medicine to your home


• that on really cold mornings, Ashley will wear her warm hat without a fight


• for friends who don't mind if you complain a lot about your job


• for oatmeal with peaches on a cold winter morning


• for ottomans. There's nothing better than being finished with my nightly chores, sitting on the couch and putting my feet up on my ottoman


• for those unexpectedly warm days in the middle of winter. Tomorrow morning the temperature is predicted to be 19 degrees. By Saturday, it is forecast to be sixty five degrees.


• for friends that you know really mean it when they say call anytime if you need anything (thank you Lynnette and Amy).

Special Exposure Wednesday

I love to think back to the times when my now 18 year old, almost 6 foot tall son was tiny enough to snuggle against his Grampy's chest. I spent the first year of my first child's life living with my in-laws, wonderful people who helped me become the best parent I could be. I owe them so much...



Make sure to check out all the great Special Exposure Wednesday photos at 5 Minutes For Special Needs!

"I never want to not be disabled"

My kids and I love the snow, but unfortunately we don't see very much of it around my part of Virginia. Then again, maybe that's why we love it - because we don't have to deal with piles and piles of dirty snow for 6 months out of every year. We get the pretty, magical snow that comes and goes in a few days, hopefully long enough to get a day or so out of school or work.

But parts of my state do get lots of snow, and one of our favorites is Wintergreen Ski Resort. If ever we are needing a dose of snow, Wintergreen is only an hour away.

One of the things I like most about Wintergreen is the owner's committment to providing a ski experience for everyone - even, dare I say it, people with disabilities. In addition to sponsoring the Virginia Winter Special Olympics each year, Wintergreen also has an adaptive sports program. Here is a great article that recently appeared in a Winston Salem, NC newspaper about the program, and one of its participants. I *love* her final comments in the article!

Adaptive Sports at Wintergreen

Be a Good Boy and Bring Mrs. Smith a Fresh One

As the parent of three children with significant disabilities, I have experienced those moments when adult beverages call to me. I imagine that for teachers of children with significant disabilities, the challenges faced each school day, both with educating the children and dealing with often difficult administrative rules, can also present the siren call of alcohol's numbing effects.

But, is it necessary to heed that call during the work day when those children's eduation and lives are in that teacher's hands. I think not....

Teacher Drunk On School Grounds