Spread The Word - TODAY

It is time to “Spread the Word to End the Word” and today. March 31, 2009 Special Olympics is calling for a national day of awareness for America to stop and think about their use of the R-word. That R-word is not “recession,” but something more hurtful and painful – “retard.”

Check out their website for more information, and then pledge your support at www.r-word.org.

Need more encouragement...

What The Heck Is Going On?

I have run across two news articles in the last week that concern me greatly. The first article tells how fewer than 10 percent of Blind Americans can read Braille. The second article, a student’s personal story, appeared in the Columbia University Spectator. The student labels himself as one of a very few Deaf students at the university who sign.

What is going on here? I fight every single day to have Ashley educated in both Braille and sign, and yet adults are rejecting both those things. I don’t get it…

Love, Mama

My beautiful Ashley is now 14 years old! I didn't give birth to you, but I feel as if we always were meant to be together. I cannot imagine my life without you in it.

Happy birthday my special love!

The Gimp Project

The Gimp Project examines movement of dancers with disabilities.

Dancers with disabilities take the stage in a performance art piece entitled the Gimp Project at the Abrons Arts Center in New York. Staged by the Heidi Latsky Dance Company, the show offers a different look at disability, as the performers find beauty in imperfection and demonstrate inventive ways of working around mobility issues. (Video by Lisa Rose / The Star-Ledger)

March 26th - Purple Day

Ashley has Epilepsy. She has 2-3 seizures on a good day and 4-6 on a bad day. Currently, her seizures are not horrible, but they still are a major disruption to her life. People who don't know her well, and that includes a majority of the people in her school, are frightened or dismayed by her seizures. The same was true for Cassidy Megan, a young girl from Canada. But on March 26th of last year, Cassidy began to change the world and educate people about Epilepsy.

Motivated by her own struggles with epilepsy, Cassidy Megan founded Purple Day in 2008 to increase awareness about her disorder. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone.

Cassidy’s efforts began in her hometown in Nova Scotia, where she taught classmates and peers not to fear seizures, and explained to them that for the most part, people with epilepsy lead normal, healthy lives.

With the help of her mom, Cassidy began contacting politicians, celebrities, non-profits and corporations, asking them to spread the word about Purple Day and epilepsy. The response was outstanding. People from around the world joined the campaign, helping make Purple Day 2008 a great success.

But Purple Day didn't stop in 2008. The cause if growing with the help of politicians, David Letterman, and Epilepsy organizations around the world.

So find something purple to wear today, visit the Purple Day website for more information, and help spread the word - people with Epilepsy are people first.

Special Exposure Wednesday

When you can't hear, you have to look really, really close to learn how to say 'SNOW'!



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

Someone To Watch Over Me - Follow Up Part Two

Today I am continuing my followup to my post about guardianship issues for my 18 year old daughter, Jessica. My original post is here, and Part One of the follow up appears in yesterday's post.

Question 3 - What if I had concerns regarding Jessica's care in her group home? Would I be able to intervene with a guardianship? What if I knew her caregivers were trying to cover up something? Legally could I do anything to help Jessica?

Whether you are the guardian or not, anyone can file a report of suspected abuse or neglect. Your rights as a guardian are no different in that respect from anyone else. I don't see that guardianship helps in this situation at all. A person does not decide NOT to abuse someone because she has a guardian.

Question 4 - What are my other options? Would my child have to be legally competent to sign a medical directive? Could she also revoke it should the mood strike her?

For one thing, an advance directive is not an issue for a child because everyone under the age of 18 is considered to lack capacity. I think the competency level to agree to and sign one is fairly low. I have met with individuals who are basically non-verbal, but I had no doubt that they understood the concept and I had no problem drafting an advance directive for them.

As for revoking an advance directive, yes, the person can revoke it. That's one of the beauties of the concept because it is easy to write, easy to use and easy to change. You can do all those things without the involvement of attorney or courts.

This is an argument that is used quite often against advance directives, but I have rarely seen it play out in real life. The only time I've heard of it causing a problem is with a person with long term mental illness whose capacity yo-yos.

Question 5 - I've protected my child ever since I adopted her. Sometimes it seems like she needs the protection still, if not more.

I live in the real world and I want everyone to have the same opportunities and the same experiences as I do. I understand that some people need extra care and attention. I am not against guardianship in some cases, but if we can protect the person while still maintaining the civil rights, then why not?

The reality is that guardianship is always an option but maybe shouldn't be our first option. If you choose an alternative now, and decide later that your daughter needs guardianship, what have you lost? If you choose guardianship now, there is very little chance you can go back and change that decision because you would have to go back to court and prove that your daughter has regained capacity - very hard to prove when the individual has life-long cognitive disabilities.

I'm glad a lot of people have trouble with the idea of guardianship because it is a last resort and should be considered only in those situations where an alternative is not feasible, especially for a young person just starting their adult life. Even in a situation where it is needed, we should still pause because we are taking away that person's civil rights. When a guardian is appointed, the person loses the right to vote - to choose where they live and work - to get married or divorced - to have a driver's license - to make medical decisions including such personal decisions as sterilization, abortion, major surgery and do-not-resusitate orders - to enter contracts to rent, buy or lease property, and to write a will or advance directive.

Even if all those rights do not apply (even if none of these rights apply) to the individual, just the sheer loss of basic civil rights that these examples portray should give us pause when we consider petitioning for guardianship.

I hope you all have found this information as valuable as I have. And again, if you are considering any legal action involving your adult child with a disability, I urge you to contact an attorney or you state's protection and advocacy organization.

Someone To Watch Over Me - Follow Up Part One

Several weeks ago, I wrote a post about my daughter, Jessica, and questions about guardianship for her. As I mentioned in that post, both the school staff and the staff at our community service board were pushing me to go to court and ask for guardianship.

I was very confused about the whole process, and just the concept of declaring my daughter incompetent left me with a bad feeling. But, my brother had been through the guardianship process, and the school and community service board folks were so adamant that I felt I needed to investigate. That was what led me to a wonderful attorney who helped make everything clearer for me.

Jessica and I met with the attorney, and together we agreed as to the path we would take. I believe we are both comfortable with our choices, and I am anxious to get the process underway. Because I heard from other parents after writing my last post, my attorney has given me permission to share some of her comments with my readers.

It’s a lot of information, so I will break it up into two posts – one today and one tomorrow. I hope it will help other parents, but keep in mind that laws may vary from state to state, or country to country, and anyone with questions about guardianship should contact their own attorney.

Question 1 – Deciding to ask for guardianship means going to court and declaring that your loved one does not have the capacity to make decisions. Is the law black and white on that? Can a person have capacity for some things and not others?

The law is not black and white. Capacity is not an all-or-nothing concept, nor is it an on-off switch that can never be changed. Rather, capacity is fluid – it changes over time and circumstance. For some people it may change from day to day or may cycle as a disability waxes and wanes. When someone tells me that someone lacks capacity, my first question is, “Capacity for what?” because the level of capacity is different for different levels of decisions. For example, the level of capacity needed to make a decision about where I want to work or live is different than the level of capacity needed to make a decision about how to treat a brain tumor. Similarly, the level of capacity needed to sign an advance directive is lower than that needed to make the medical decision the agent may be called on to make.

Question 2 – If my child is of legal age and there is no guardianship in place, and if there was a car accident and my child was seriously injured, would the hospitals and doctors be able to provide information to me without my child’s consent? What would happen if my child were in a coma or was involved in some other way that left them unable to communicate?

Whether a person has a disability or not, there are laws that protect all of us in this situation. In Virginia, we have the Health Care Decisions Act that specifies who can make health care decisions for people when they are incapacitated for one reason or another. Why would a person in a coma be treated any differently if she had an intellectual disability before the coma? Everyone in a coma is just as unable to express their wishes and consent. We also have implied consent which covers situations where there is danger of death or permanent harm if treatment is not given immediately. If I am taken to the ER after a car accident and I am unconscious and in critical condition, the doctors can provide treatment without consent.

Furthermore, we all need to consider what would happen if we are ever in a situation where we cannot make or communicate our own decisions. We all, cognitively impaired or not, need to designate a surrogate decision maker now before that situation occurs.

Stay tuned for part 2 tomorrow!

Special Olympics Bowler?

Dear President Obama,

I am a single mother of four children, three of whom have significant disabilities. In addition to working a full time job and several part time jobs to provide a home and a life for my children, I also devote a huge amount of time and energy to advocating for their rights.

I want people to know my children for the special people they are. I want their unique talents, their sunny smiles, and their unconditional acceptance of others to be recognized and not ridiculed. It is a never ending battle with school systems, medical systems, recreational organizations, retail organizations and church groups to have my children accepted and not ignored or made fun of.

During your run for the Presidency, I posted on my blog your recorded comments about your support for people with disabilities. I was impressed and I shared those impressions with everyone I could. I voted for you and urged others to do likewise.

But, your comments last night on the Jay Leno show likening your lack of bowling prowess to the Special Olympics left me less than pleased. I trust you didn't mean for your comments to sound disparaging, but for the viewers who may already have been in that group of people who take pleasure in disparaging people with disabilities, your comments verified their feelings.

I would love for you and your family to meet my children. My birth son, Chip, is 18 years old, heading to college this year, and has been a huge advocate for his siblings with disabilities. Ashley, my 14 year old daughter whom I adopted at age 2, is deafblind, has seizure disorder and currently has three brain tumors. But she is also wild and crazy, a typical teenager who can get in trouble at school for cursing at her teacher in sign language (fortunately the teacher didn't know what she was signing), and has a smile that can light a room. Jessica, my 18 year old daughter who was adopted at age 9, is diagnosed with mental retardation and reactive attachment disorder. She is learning to control her aggressive tendencies, and loves nothing more than playing basketball for the Special Olympics. She loves Hannah Montana and the Jonas Brothers and dreams of the day she may marry and have children. And then there's Corey. Corey joined my family 4 years ago when he was 12 years old. He was living on the streets of Baltimore with his drug-addicted, prostitute mother. He is diagnosed with Asperger's Syndrome and developmental delay. He is in JROTC at his high school and dreams of joining the Marine Corps when he graduates. He wants to serve our country in whatever way he can.

These are just four of the people whose dreams of acceptance were harmed by your comments. Will you consider meeting them and showing them that you do support people of all abilities, and that their dreams are just as important as anyone else's?

Thank you, Mr. Obama, and I look forward to hearing from you soon.

Another Role Model - Followup

On March 8th, I wrote about a young woman named Rebecca Alexander. Ms. Alexander is diagnosed with Ushers Syndrome and is slowly going both deaf and blind. She refuses to let her disability define her, and she serves as a role model for young women everywhere - disabled or not.

Today, Ms. Alexander was interviewed on the Today Show. Check out this link for a glimpse into this lovely young woman's life:

With Courage She Faces Being Blind and Deaf

Be My Brother

I ran across the Tropfest web site the other day, and boy was I glad I did. Billing itself as the "World's Largest Short Film Festival", here's what they say on their website:

"Today, Tropfest is known as the largest short film festival in the world. It is widely regarded for its support of new filmmaking talent through its festivals, filmmaker initiatives and distribution program.

Tropfest gives audiences exposure to premium short films, and delivers a unique, free outdoor entertainment experience that is second to none.

Tropfest offers filmmakers a world-class platform for launching their careers through its reach, prizes and various initiatives designed to help alumni make connections within the industry. Dozens of our filmmakers have gone on to have successful local and international careers following their Tropfest debuts.

Tropfest counts some of the film industry’s most distinguished professionals as supporters including George Miller, Naomi Watts, Salma Hayek, Russell Crowe, Nicole Kidman, Sam Neill, Baz Luhrmann, Ewan McGregor, Darren Aronofsky, Will Smith and many others. "

So what does all this have to do with disability? Just take a look at this short film titled, "Be My Brother." It is a story about a young man so charming and charistmatic that he challenges the prejudices of a stranger at a bus stop.

Thankful Thursday

Today I am thankful...

• for the beautiful day yesterday. The kids and I had a 1/2 day off and we made the most of the lovely weather.


• that my local handyman did a toiletectomy for me yesterday. Ahh, the joy of having my bathroom back....


• for Dana, the attorney who met with my daughter, Jessica and me this week to help us sort out my guardianship questions


• for pistachio ice cream


• that I have two strong sons to help with yardwork


• for the special picture that a dear friend shared with me this week


• that so far I am able to make my mortgage payment. It breaks my heart to think of families losing their homes


• for double coupon day at my local grocery store


• that Ashley let me paint her toenails pink


• for my Dyson vacuum cleaner. With four kids, a dog, and two cats, the Dyson Animal is a must have

Special Exposure Wednesday

Ashley is an artist, and now everybody that visited one of our local malls knows it! A piece of Ashley's work was prominently displayed at a show featuring art from all our county schools, and although I know I am prejudiced, her Octopus was a standout!! I've said it before, but I will say it again - not bad for a blind kid!



Make sure to visit 5 Minutes For Special Needs to see all the other Special Exposure Wednesday shots!

Due Process - The Conclusion

Today brings my due process story to a close. If you like, you can catch up by reading Part One here, Part Two here, Part Three here, and Part Four here.

Our due process hearing was over and I felt as if a weight had been lifted from my shoulders. I wasn’t assured yet what the outcome would be, but I knew that for the immediate future, I couldn’t do anything else to affect that outcome. I was able to take a breath.

My attorney had told me that most due process decisions took about three weeks. He told me that the hearing officer would have to research the law, apply it to our particular situation, and then arrive at a decision. But three days after the hearing ended, I received a phone call from my attorney. He asked me to come by his office, but would say no more.

Immediately after work that day, I rushed to his office. I thought I saw a glimmer in his eye, but I was afraid to hope too much. I didn’t have to wait long for the news – the hearing officer had decided in our favor ON EVERY SINGLE POINT! He ruled that Ashley should receive extended school year services all summer long, during Christmas break, and during Spring break! I was ecstatic!

My attorney, our witnesses and I went out to celebrate that night, but my attorney cautioned us all that the school district would more than likely appeal the decision. He reminded me that this was the first time the school district attorney had lost, and that he expected retribution with a vengeance. And he was correct. The school district appealed the decision to Federal court within the week.

It was back to practicing and making ready for the Federal court trial, but at the last minute, the school district decided to withdraw providing we would agree to some settlement terms. I listened and I agreed. Part of the settlement agreement was that I would not disclose the contents of the agreement, but you can rest assured that if I had not been offered what I thought was appropriate for Ashley, I would not have settled.

It was a win – a big win – and most importantly, a huge step in the direction of an appropriate education for Ashley and for others who followed behind her. However, I still had lingering questions – would the school staff that had been involved, and especially the teacher who had been exposed during the hearing, treat Ashley differently? It was a situation that I continue to have to monitor even years later, but overall, things have gone well. Anyone considering due process must realize and must accept that relationships with the school district will be forever changed, regardless of the outcome of the due process hearing. It’s not unmanageable, not even negative, but different.

So what did I learn along the way, and what things might help other families facing a similar situation? Here is a list:

From the day your child enters school, and if your child is receiving special education services, or may receive them later, document EVERYTHING. Do NOT rely on phone conversations. Put everything in writing (email is fine). Prepare as if you will go to due process and hope that you never have to.

Do not rely on school evaluations. Those evaluations may be fine, but for a completely objective evaluation, find your own experts. And make sure they are experts. Expert testimony wins due process. The lack of expert testimony will lose 98% of the time.

Never ever go into due process without legal representation. Part of winning is knowing how to play the game. Unfortunately, you cannot rely on being ‘right’ to win. You have to be ‘right’ but you also have to know how to play.

And finally, never doubt that you know your child best. You know what works and what doesn’t work. You have the big picture – the rest of your child’s life – in your heart and mind. The teacher has one school year, and the school district has 12-15 years. Fight when you KNOW you have to fight – mediate if you can – thank the school staff when they do something right and good – but never give in to pressure when you know your child’s education is at risk.

Thanks to all the readers who have stuck with me through this long story. I hope it was worth your time, and I hope you found something useful for your child. And, I will be happy to talk to any of you at any time you may have questions or concerns.

Spread The Word

It is time to “Spread the Word to End the Word” and on March 31, 2009 Special Olympics is calling for a national day of awareness for America to stop and think about their use of the R-word. That R-word is not “recession,” but something more hurtful and painful – “retard.”

Check out their website for more information, and then pledge your support at www.r-word.org.




Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope... and crossing each other from a million different centers of energy and daring those ripples build a current that can sweep down the mightiest walls of oppression and resistance. ~Robert F. Kennedy

Support That Works

Dave Hingsburger wrote a very moving post yesterday on his blog, Chewing the Fat, about a young man who felt completely and utterly alone although he had been provided supports throughout his life – supports for inclusion, for a planned and programmed life, and for community integration. But what touched me even more than Dave’s post was a comment left by one of Dave’s co-workers. Manuela said:

"Far too often the people that provide support think their job is to be a friend. Our funding in Ontario even encourages that belief. We provide funds to families encouraging them to hire respite or contract workers - to take their child out to the movies, to sports, to the community, to be a friend. We reward people for being great friends instead of helping one to find friends. The latter is a much more difficult job that many of us will not take on, that many that hire us don't want us to do. It’s no wonder we end up with so many lonely people surrounded by so many paid supports."

I could very easily take out the young man in Dave’s story and replace him with my Ashley. Once again, Dave and Manuela have opened my eyes to what should have been visible in the first place. Thank you both…

And to all the parents of children with disabilities and to all the paid support staff, please take a moment to consider Dave’s and Manuela’s words, and ask yourself what you can do to prevent rather than foster profound loneliness.

Thankful Thursday

Today I am thankful...

• for antibiotics. I've had a sinus infection and after three days of the magic pills, I am feeling almost normal again


• for a dinner of homemade meatloaf and mashed potatoes


• that I appeared to be an average student at this week's advanced sign language class, not the clueless one that I have been looking like


• that my son, Chip, got his second college acceptance letter this week - to Virginia Commonwealth University


• that some of Ashley's artwork is being displayed at one of our local malls. I'll try to get some pictures and post them here...


• for all my Spring plants poking their heads up through the soil


• that Dancing With The Stars, and most especially Maks, is back on TV


• for the pile of books I got from the library last weekend. Getting new books to read always feels like Christmas to me


• that Ashley only got up three times last night


• for the people who don't laugh at me when I say I am considering adding another child to my family

Special Exposure Wednesday

It was two summers ago - we were spending a week at North Carolina's Hatteras Island - Ashley was feeding the 'beach chickens' - life was better than good...



Make sure to visit all the other Special Exposure Wednesday shots at 5 Minutes for Special Needs!

Due Process - Part Four

My Due Process story continues... You can catch up by reading Part One here, Part Two here and Part Three here.

Besides my testimony, our portion of the due process case involved our expert’s report and two more witnesses. I couldn’t afford to bring the expert witness back for the actual hearing, but the hearing officer agreed to accept the report as testimony as long as the school’s attorney agreed. Since it would have looked really petty if the school’s attorney had objected (in my opinion), he did agree.

My next two witnesses were Ashley’s pediatrician, Dr. Gewanter, and her occupational therapist, Kari. Dr. Gewanter, himself a parent to a child with a disability, was also a very strong disability rights advocate. He was the first doctor who met Ashley when I adopted her, and he had followed her for many years. He knew what she was capable of, and he had watched her regress – the whole point of our due process case.

The school’s attorney did his best to discredit Dr. Gewanter, but he only ended up making himself look foolish (the school’s attorney, that is). Then it was time for Kari. Kari had been Ashley’s OT for many years, helping Ashley learn to eat by mouth and master activities of daily living. In addition, Kari had a background in working with people with vision impairments, a fact which led the hearing officer to designate her an expert witness also. But the most important feature of her testimony was the way her abiding belief in Ashley’s abilities and her profound disappointment when Ashley began to regress came through in her words. She was the most powerful witness we had. I think the school’s attorney realized the effect she had on the hearing officer, and wisely he decided to forgo cross examination.

Our case closed and the school began its parade of witnesses – but strangely, it wasn’t a parade. The school’s attorney seemed so sure of his case that he only brought two witnesses to the stand. The first was Ashley’s school principal, a very nice man, but someone who didn’t really have anything substantive to offer. The second was Ashley’s teacher, a woman would could speak as if she were an expert on the subject of deafblindness, but who under cross examination by my attorney would be shown to be lying.

But still the school’s attorney felt he had the win in the bag. It probably goes back to that statistic I shared early on about how school districts do win almost every due process case. This attorney had won everything to date, and he believed he would win this one also. He was so wrong….

It was time for closing arguments, and my attorney did a stellar job. The school’s attorney closed with a very short statement, again revealing his arrogance in my opinion. The hearing officer called the proceedings to a close, and everyone started to pack up to leave. We all shook hands, smiled, and played nicely one last time. The school’s attorney was the first to leave.

As I started to walk out with my attorney, the hearing officer shook my hand, looked directly into my eyes, and wished me the best for Ashley. It seemed a little strange at that time, but in retrospect, I think he was sharing a message with me.

The waiting for a decision began. My attorney told me that it often took 3-4 weeks for a decision. Ours was back in three days…..

The conclusion to this story will be next week - I PROMISE!

Another Role Model

Back last September, I wrote about how difficult it is to find adult role models for a child like Ashley - people who are deafblind but who are also successful, happy members of society. I told you about Nancy Brown, a woman who is deafblind and who is very happy with her life and with herself just as she is.

Well, I have found another role model - a young woman living an exciting life in New York City - a young woman who is deafblind, but who refuses to dwell on that. In her words, "If you were in my shoes, you’d do the same thing. If these were the cards you’d drawn, you’d play them. You would." According to the author of an article in New York Magazine about Rebecca Alexander, who is being interviewed while she prepares for a party, "She grabs a scarf and waves me out the door, past her cane. Her friend,Tony loudly yells good-bye. While she hails a cab on the corner, I tell her about a poll that says Americans are more afraid of blindness than of AIDS, cancer, and heart attacks. She looks dumbstruck. “Cancer? For real? I don’t get that. Really, it’s not that bad.”

I don't know Rebecca Alexander but she reminds so much of my Ashley. Here is a link to the New York Magazine article (Going Deaf and Blind in a City of Noise and Lights). It's long, but an extremely interesting read.

Someone To Watch Over Me

My daughter, Jessica, turned 18 years old this past December. Lots of people have been telling me that I need to go to court and have myself appointed her guardian. The school folks have told me that if Jessica decides she doesn't want to go to school anymore, she can make that decision for herself - unless of course I am appointed her guardian. The folks at our community service board tell me that Jessica would be able to make her own decisions regarding where she lives and what medical procedures she may want or not want - unless of course I am appointed her guardian. Friends and family tell me that I need to be appointed guardian for Jessica's sake. So, why do I feel so uncomfortable with the idea?

Jessica is significantly intellectually disabled. Her IQ is 52. She has aggressive outbursts and has injured both herself and others. She is living in a group home, and probably will be for the rest of her life. I'm hopeful she will be able to have a job, but our efforts to support that have so far not been successful.

So, it does seem like Jessica needs a guardian - someone to help her with decision making and to ensure she is not exploited or taken advantage of. Several weeks ago, I contacted the attorney that has helped me with both a due process case and a lawsuit againt Medicaid. I wasn't asking for his assistance with the guardianship because he works for our state's protection and advocacy organization and these kinds of cases are not ones they handle. Rather, I just wondered if he could recommend an attorney.

In his usual passionate,helpful manner however, he did ask one of the other attorneys in his office to contact me. I now have a meeting scheduled for the attorney, Jessica and me to discuss options. The most exciting thing about all this - the attorney told me that there are options other than guardianship. I have no idea what they are, but just the knowledge that there might be other options made me feel a little more comfortable.

Have any of you had to address issues like this? What did you ultimately do, and what were your feelings while going through the process? I'm having a tough time, and am not doing a good job explaining why. Maybe your comments will help me...

Thankful Thursday

Today I am thankful...

• that my kids are finally going back to school tomorrow. An unexpected snow storm has kept them out of school for the last three days. It's time, really time, for them to return.


• that my cat is not the ugliest cat in the world.


• for the great chicken soup Miss Amy made today and had waiting for our dinner tonight.


• for all the folks at my adoption support group meeting which was held yesterday.


• for Ashley's calm, patient attitude during her quarterly blood work which was done yesterday. She has really come a long way. It wasn't too terribly long ago that it took four people to hold her down during a blood draw.


• that The Bachelor is over. I was really enjoying it, until the end, that is. Jason, I just don't know about you now...


• that although the low temperature this morning was 10 degrees, on Saturday the forecast is calling for 78 degrees. My poor plants are so confused...


• for the morning emails I receive from my sweet friend, Lynnette. She helps keep me grounded when all around me seems crazy.


• for ice cream sundaes, especially during a snow storm


• that the auditor is finally finished with me at work. Now we just wait for the bad news.

Special Exposure Wednesday - When Beach Towels Take a Snow Day

We got more snow this week than we have had for the last 5 years combined! It's Wednesday and schools have been closed all week. On Monday, most everything was closed down while roads were cleared and the sun started melting the ice just a little. But, temps have remained in the 20's so not a lot of melting is happening. Here are a few pics from this very unusual event (well, at least unusual for those of us in the South). And don't forget to check out all the other Special Exposure Wednesday shots at 5 Minutes for Special Needs!

Oh, and just for the record, Ashley was not impressed with the snow...She's a beach babe at heart.

Due Process - Part Three

Today I am continuing my due process story. You can catch up by reading Part One here, and Part Two here.

I don’t think I slept at all the night before the due process hearing began. I kept practicing over and over in my head how I would respond to both my attorney and to the school attorney. By 3am, I was getting everything all mixed up in my head, and I began to cry just knowing I would mess everything up and have to disappoint Ashley.

I got up very early, helped Ashley get ready for school, and then got myself ready. I had obsessed about what to wear (I know that surprises those of you that know me well), and finally decided on a pink blazer and khaki slacks. I once heard a news story about a prison that painted its walls pink because it reduced the number of violent acts committed by the prisoners. Would it help the school attorney be nicer to me if I wore pink? I hoped so, but by now you probably have a pretty good feeling about how nervous I was.

I arrived at the hearing location – one of our local government offices – and waiting in the parking lot for my attorney and his paralegal. Just seeing their calm, collected faces helped me feel a little better, but I also know that I was trembling when I shook their hands.

We all got settled in the hearing room as did the school attorney and the principal of Ashley’s school. All the other witnesses – both mine and the school’s – were kept in separate rooms, and once a person testified, they had to leave (except for me, of course).

The hearing officer walked in as did the court reporter. As the court reporter set up, the hearing officer introduced himself to us all, and told us what all the ‘rules’ would be. He was a very kindly looking older gentleman, and I prayed that his grandfatherly appearance would relate to a mother, single by choice, who was ready to do battle to obtain the services her child deserved. My mind drifted to thoughts of my own father and the knowledge that he never did understand my reasons for adopting Ashley. I prayed this man would be different.

My attorney started his questioning of me – details and details that I had to keep organized in my mind, and spit out with confidence. I know my voice was shaking, but I also know my gaze was strong. My attorney had told me to always direct my answers toward the hearing officer. He said my eyes would tell my story even better than my words.

We went over Ashley’s life from the time I decided to adopt to the present. I told of her multiple disabilities, low-incidence disabilities that were not easily understood by my school district. I talked about educating myself on Ashley’s disabilities before I even brought her home, and how that education was ongoing. I talked about serving on the advisory council for our state’s deafblind project, about serving on the steering committee that developed our state’s alternate assessment for children with severe disabilities, and about being asked to teach a class on deafblindness to teachers coming back to college for their certification in severe disabilities. My attorney was trying to show that I was more than a demanding and whiny mother – that I was a professional who knew more about her child than any one else, and that I had the credentials to prove it.

My attorney’s questioning lasted until the hearing officer suggested a lunch break. I couldn’t eat – I was such a nervous wreck. My attorney started up again after lunch and his questioning continued until 7pm that night when the hearing officer called a halt and said we would resume the next day.

The next day, the school’s attorney got his chance to cross examine me, and it was every bit as brutal as I expected. But, I think I held my own, and I never cried although I was very close to it. I kept telling myself to act like a professional and that the hearing officer would see me as a professional. During the school attorney’s questioning, my attorney often ‘objected’. I think sometimes he was just trying the throw off the rhythm of the school attorney!

Finally, it was over. I had said all I would be able to say, and now the other witnesses were called. I became the observer, and boy was it an eye-opener…

More next week…thanks for sticking with me through this very long story.

The Blizzard of 2009

Ok, well maybe not a blizzard by Northern standards, but for the South, this is indeed a blizzard! Just the other day I said I was ready for Spring, followed by the comment "If it's not going to snow and snow big, I just want warm weather." Appears Mother Nature was listening to me...

The Bad News

Last Friday, I shared good news with you....today, we delve into the bad news...

Those of you who are regular followers of this blog know that last September, during the first week of school, I filed a complaint with my state's Department of Education against my school district. Ashley ONLY communicates via ASL (sign language). She is deaf and blind. When school started, I was told the school district had been unable to hire an instructional assistant with sign language skills. And, Ashley’s teacher does not sign.

The complaint worked its way through the bureaucracy, and finally my school district was found in non-compliance, and had to devise a plan to deliver compensatory services to Ashley.

One of their ideas, and on the surface it seems to be a good idea, the school district administrators suggested involving Ashley in some extracurricular activities. They assured me she would be provided the appropriate supports for the activities.

The first of the scheduled compensatory activities was for Ashley to join the school cheerleaders at a student-teacher basketball game. Ashley, I was told, would be a cheerleader and would have the support of an interpreter. The school district was very pleased with their idea, and said they were making all the plans. Unfortunately, things didn’t go quite as I was told they would. The morning after the game, I composed and sent the following letter to the two administrators who had devised the plan. Identifying information has been changed to protect the innocent (or guilty, as the case may be…). I do not yet have a response.

Dear school administrators,

As you know, last night was the scheduled student/teacher basketball game at which Ashley was scheduled to join the cheerleaders and participate in the cheering. This activity was designed to satisfy some of the compensatory services discussed as a result of my complaint to the Department of Education. I wish to share my observations of how last night went, and I would then like to hear your opinions.

1. I dropped Ashley off at the front of the high school where the game was being held and left her with our friend, Miss Amy while I parked my vehicle. After parking, and as I approached the front of the school, I saw a woman I did not know come up to Ashley and say, “Hi squirrely girl.” That same woman then turned, approached me, stuck out her hand and said, “Hi, (and said her name).” I said , “It’s nice to meet you”, and she turned and walked away. (**That person was the recently hired instructional assistant assigned to my daughter. She is supposed to know sign language, but I think Ashley knows more.**)

I have some problems with these exchanges. First, in my community of friends and acquaintances the term “squirrely” is not used as a term of endearment and does not have a positive connotation. Secondly, Ms. (instructional assistant) never signed to Ashley or to me. Deaf etiquette demands that if a person is around someone who is deaf, and if that person signs,like I have been told Ms. Instructional assistant does, all conversations should be signed. Any other behavior is rude and exclusionary.

2. I met the interpreter also at the front of the school. Again, that person did not sign to me or to Ashley. We walked into the school and into the gym and located the student cheerleaders. Just as we arrived, the National Anthem was beginning. I helped Ashley understand that she needed to place her right hand over her heart, and I then expected the interpreter to sign the Anthem. She did not, but after a few moments, Amy did sign the Anthem to completion.

3. After the Anthem, I signed to Ashley that I was leaving and that she would be cheering. I moved to the other side of the gym. Ashley did not have a problem with that separation.

4. I continued to observe Ashley with the interpreter as the teacher athletes were announced, and the interpreter still signed nothing to Ashley. She sat on the bleacher and pulled Ashley to sit beside her.

5. After the teachers were announced, the student athlete names were called. At this time, all the cheerleaders except Ashley had moved to the center of the floor to form a line through which the students ran. Ashley remained sitting on the bleacher with the interpreter who was still signing nothing. At this point, I went back to Ashley and the interpreter and said that I believed Ashley was to be on the floor with the rest of the cheerleaders. The interpreter said, “Oh, I didn’t know that.” Still she was not signing.

6. I tried to locate the pom poms that the cheerleaders were using since no one had gotten any for Ashley. I finally found them, but by that time the cheerleaders had returned to the side of the gym floor.

7. I stood back to observe the interaction between the regular ed cheerleaders and the exceptional ed cheerleaders, and there was none.

8. At that point, I caught Amy’s eye across the gym and signed to her that things were not working and that we were going to leave. Amy came over, talked for a few moments with (one of the school administrators). Although Mr. (administrator) and two other adult staff from Ashley’s school were standing less than 5 feet away from Ashley, and I believe witnessed both the lack of interaction and the issues with the interpreter, none of them intervened and attempted to improve the situation. I did see Mr. administrator talking notes, so perhaps he will be able to provide his interpretation of the events to you.

9. After being in the gym for approximately 30 minutes with Ashley’s only communication coming from Amy on two short occasions and from me, Ashley was becoming frustrated and asked to leave. I tried convincing her to stay but she signed, “Why? I want to go home.”

10. Mr. administrator had to move from in front of the exit door for us. He said nothing as we left, but one of the other adult staff said, “Have a good evening.” The interpreter followed us out of the building, and I believe, left to go home also. She did not sign anything at that time to Ashley.


I believe you both know me well enough to understand that I am not at all pleased with the way things happened last night. As we discussed at our IEP meeting on this subject, the game and cheering activity appeared to provide a great opportunity to satisfy some compensatory services while also helping integrate Ashley into the community more, and provide unique opportunities for growth in communication.

I don’t believe my expectations for the evening were unreasonable. I wanted Ashley to be included with her regular ed peers in a fun activity. I wanted adequate communication provided so she could be a fully participating part of the activity, and I wanted her to receive the same respect that her peers received. Unfortunately, none of the expectations were met. I believe the environment was exclusionary and that improper supports were provided. To me, the entire activity felt like tokenism rather than inclusion.

I am not comfortable proceeding with plans for (the next event which we have discussed) until we work through these issues, and I can be assured the next event will be structured with the proper preparation and supports. In addition, I am requesting that Ms. Instructional assistant apologize to Ashley for the behavior I mentioned in item #1 above and that you both witness and verify that apology.

I am anxious to hear your comments,
Deborah