The Toughest of Times

One of my biggest fears as a mother is not being able to provide for my children. Given the current economic environment, and the fact that my employer is laying people off at an alarming rate, this fear is ever present.

But, I still do have my job. I am still able to provide for my family. Little has changed other than the cost-saving measures I have put in place over the last year. They are small things – like buying generic or store brands at the grocery store – but I believe that it can make a difference.

Two things happened this past weekend however to make this disastrous economy rear up and slap me in the face.

First, a friend of mine that is in her 50’s and who had worked for IBM for over 20 years was laid off. Her husband is in real estate, and not being the most eager beaver, almost never sells anything. That is nothing new, but now that my friend has lost her job, the meager amount her husband brings in barely buys the groceries.

My friend has searched and searched for a job with no luck. She is currently a sales clerk at a clothing store and bringing home minimum wage. The family is living on an equity line of credit, unable to plan for college for their high school senior daughter, and as she said, probably two months away from losing everything.

The second slap in the face happened when we posted something on freecycle.org. We had been going through all our Christmas decorations, and decided that we had too many lights, cookie tins, stuffed Christmas animals and other general decorations. We decided to post these on freecyle.org and give them to the first person who responded. Within an hour, 55 people responding asking for the decorations. Each one had a story, and the stories were all very sad, e.g. “I’ve been laid off, can’t provide Christmas gifts for my children and the lights would make them so happy.”

Fifty five people in an hour – fifty five people who can’t provide Christmas – too many children to count who won’t know the joy of finding gifts from Santa – fifty five families who just want some lights to put a smile on the faces of those children. It made me want to go out and buy lights for everyone who responded (which of course I can’t do).

What I can do is to remember these events and do whatever I can to brighten the holidays for someone else. And I urge you to do the same thing.

It can be something small and simple – take some food to a foodbank, drop some change in the Salvation Army kettle, visit a neighbor who spends most of their time alone, call an old friend, help out at a homeless shelter, befriend a child in a group home. But I challenge you all to do something.

Even when times are bleak, I believe we can find ways to help others. I would love to hear your stories of helping….

Today I am thankful for all that I have and that I am able to share what I have with others.

Happy Thanksgiving

Happy Thanksgiving, everyone! Today I am thankful for many things, including all the friends I have made here in blogland.

I've never met most of you in person, but I feel like we are neighbors who get together each day for coffee and a chat.

This technology which allows us to make friends far and wide, friends that in the past we would never have crossed paths with, is so important to me. You are all a source of support and inspiration, and I can't imagine my life without you all.

Enjoy your families, your feasts, or anything else that makes this day special for you. And if any of you want to share a slice of pumpkin pie, come on by :)

Special Exposure Wednesday

It's time to start thinking about painting inside my house. It's been almost 10 years, and you no longer have to look closely to notice the need for freshening the paint. But how can I paint over this....??



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

Today I am thankful for my family home. It's not perfect, but it's pretty darn close!

Get It Right

I’ve written before, here and here, about the Kindle and how it is not accessible for people who are blind. So, I was really pleased to read that both Syracuse University and the University of Wisconsin-Madison have both rejected the Kindle as a replacement for textbooks. And their main reason for the rejection – the Kindle is not accessible for students who are blind.

The Kindle does have a text-to-speech feature, but I know from using my son’s Kindle that not everything can take advantage of that feature. The National Federation of the Blind, a group that is applauding the decision of Syracuse and the University of Madison-Wisconsin, said last week that while it appreciates the text-to-speech feature, the “menus of the devices are not accessible to the blind..making it impossible for a blind user to purchase books from Amazon’s Kindle store, select a book to read, activate the text-to-speech feature, and use the advanced reading functions on the Kindle DX.

And add to that the fact that many authors and publishers are intentionally disabling the text-to-speech feature on their electronic books.

It saddens me that we have such a remarkable piece of technology and some of the most basic merits of that technology are not being utilized or allowed.

Amazon, it’s time you took another look at this device and your policies regarding people with disabilities. It is a brave new world and you need to embrace that fact, not work against it.

Today I am thankful for all the technology that does enrich the lives of people with disabilities

Teacher - No. Bigot - Yes

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

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

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

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

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

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

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

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

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

Wow!!

There are three things that would make Ashley the happiest person in the world. First – a orange shirt with butterflies on it. Second, a Cheeto dispenser in her room, and third, anything that both vibrates and has lights.

I’m working on the first two, and Sungwoo Park is working on the third. All I want to know now is how to get one of their new SOUNZZZ MP3 players.



This new invention is fascinating on just about every level--it's an mp3 player for the deaf that translates musical notes into nuanced vibrations, and it could revolutionize how the deaf experience music--and even give those with hearing an entirely new way to consider music.

I want one – NOW!!!

Today I am grateful for people who stretch their imaginations and make a real difference in the world.

There Is Hope!

Today, U.S. Senator Barbara A. Mikulski introduced in the Senate a bill to strike the terms "Mental Retardation" and "Mentally Retarded" from federal lawbooks. From the press release:

Under Rosa’s Law, those terms would be replaced with “intellectual disability” and “individual with an intellectual disability” in federal education, health and labor law. The bill does not expand or diminish services, rights or educational opportunities. It simply makes the federal law language consistent with that used by the Centers for Disease Control, the World Health Organization and the President of the United States, through his Committee on Individuals with Intellectual Disabilities.

Rosa’s Law replicates a law recently adopted in Maryland. Senator Mikulski first heard about the state law from Rosa’s mother during a roundtable discussion about special education held in Edgewater, Maryland. Due to requirements in the Individuals with Disabilities Education Act (IDEA), each student who receives special education services at public schools has an individualized education program (IEP) that describes the student’s disability and the special education and services that child will receive. Rosa has an intellectual disability – Downs Syndrome – and so was designated as a student with “mental retardation” in her IEP, giving way to people at the school referring to Rosa as retarded. Senator Mikulski promised Rosa’s mother that if the bill became law in Maryland, she would take it to the floor of the United States Senate.

“Rosa’s Law” honors a young girl whose brother said, “… what you call people is how you treat them.”

“This bill is driven by a passion for social justice and compassion for the human condition,” said Senator Mikulski, a senior member of the HELP Committee. “We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me to take a step further. The disability community deserves it. Rosa deserves it.” “Mental retardation” and “mentally retarded” are terms commonly used in federal laws, including the Individual With Disabilities Education Act, the Higher Education Act, the Elementary and Secondary Education Act, also known as No Child Left Behind, and the Rehabilitation Act of 1973.

“We know now that words have meaning, sometimes far beyond what we intend,” added Senator Enzi. “Therefore, we must be very careful about the way we describe the people we see every day, including those with disabilities, or those who are undergoing treatment for a variety of health issues. Unfortunately, the federal government has not dropped this term from our laws and it still appears in the regulations and statutes that come before our legislative bodies and our courts. I am pleased to have this opportunity to join my colleague from Maryland, Senator Mikulski, in introducing Rosa’s law. I would like to thank her for her leadership and her commitment on this issue. Simply put, this legislation will make an important change in the words we use to refer to those with intellectual disabilities. It is a much needed change in the law that is fully deserving of our support.”

When Rosa’s Law was being considered by the Maryland General Assembly, Rosa’s 13-year-old brother, Nick, successfully testified on her behalf for a substitution of mentally retarded with intellectual disability. He explained, “Some people say they are just words, and it’s not going to make a difference if we just change the words. Some say we shouldn’t worry about the words, just the way we treat people. But when you think about it, what you call people is how you treat them! If we change the words, maybe it’ll be the start of a new attitude towards people with intellectual disabilities. They deserve it.”

Well done, Senator, well done!!

Today I am thankful that advocacy efforts CAN make a difference

Special Exposure Wednesday

As I mentioned in yesterday's post, November is National Adoption Month. For today's Special Exposure Wednesday, I wanted to share pictures of some of the children that are waiting for a family and a home. Search your hearts and decide if you can make their dreams come true.

For more pictures and information on children from across the United States, visit www.adoptuskids.org.








Also make sure to visit 5 Minutes For Special Needs for more Special Exposure Wednesday shots!

Today I am thankful for the joy I see in all my children's eyes.

Worth Every Challenge

From a very young age, I always wanted to make a difference – to know that my time spent on this earth was worth something. As I have gotten older, those thoughts refined themselves into wanting to leave the world a better place once I am gone. And through the adoption of some very special children, I believe I am well on my way to achieving that goal.

November is National Adoption Month. Thousands and thousands of children are waiting for families to call their own. These children often have been through hell. They have seen and experienced things that no one, and especially a child, should see and experience. Parenting them will not always be an easy job. In fact, sometimes it will seem downright impossible. But it’s not.

When I first decided to adopt as a single parent, most of my friends and family told me I was crazy and shouldn’t even consider parenting another child, especially a child with significant special needs. In fact, many of my friends have felt that way when I decided to adopt two more times, and when I told them just this year, that I am ready once again to adopt.

Maybe I am crazy, but I am not wrong. Adopting and parenting children with special needs, both medical and emotional needs, has been one of the most rewarding aspects of my life.

I know beyond a shadow of a doubt that I have made the lives of three very special children better than they would have ever been. More importantly, my life has been enriched in a way that words just can’t express.

I’m searching right now for the next addition to my family. I want a child with significant medical needs – a child that probably is growing up in an institution rather than with a family. I know it will be tough, but I have an support system in place, the willingness to tackle any challenge, and more than enough love.

What about you? Would you consider opening your heart to a child that needs a family? I promise that if you do and it gets really tough, I will be here to help you….

Today I am thankful for the social workers who believed in me and who have helped to make my family what it is today.

Insensitive

As many of you know, I have a 19 year old daughter named Jessica. I adopted Jessica when she was 9 years old. She had spent most of her life in foster care, and along the way was both physically and sexually abused. In addition, she was diagnosed as an infant with brain cancer. She had a tumor removed and two years of chemo and radiation. The cancer and its treatment left her with a significant intellectual disability, and her time in foster care left her with a significant mental illness.

Jessica has, however, become a fine young woman. She does struggle daily to keep the mental illness under control, and she is striving to learn enough to be able to live semi-independently. She is still in school, and will stay there until she is age 22 and must leave. She is in a self-contained classroom and always has been.

So imagine my surprise when I received a phone call last week from a Navy recruiter. He asked if I was Jessica’s mother. I said yes. He then went into his recruiter spiel and I couldn’t get a word in because he was reading so fast from his script.

When he finally took a breath, I asked, “Have you met my daughter?” He said no, but that he was the recruiter assigned to her high school and was looking forward to meeting her. I asked, “Do you get any information about the students you are trying to recruit before contacting them, or do you just get a list of all student names from the school?” He said, “I get a list, and then I contact the students who are of age to recruit.”

I said, “Has it crossed your mind that some of the students you contact might not be qualified to enter the armed forces?” He said, “We work very closely with our recruits and are usually successful in helping them become the best they can be.”

I then described Jessica to him. This time I was the one not letting him get a word in. I told him of her background, of her challenges, of her sweet nature, of her desire to be, as he described, the best she can be. Finally I stopped, and then said, “Okay, now shall we discuss her recruitment?”

He was momentarily speechless, and then when he did talk, he stumbled all over his words. I decided to put him out of his misery, and suggested that perhaps in the future he might want to do a little more homework before contacting families.

I have always accepted Jessica’s challenges and love her for the person she is. But, I’ll bet there are some parents who are still saddened by dreams unfulfilled. Approaching such a parent with talk of Navy recruitment is just plain insensitive.

Today I am thankful for Jessica's tenancity.

Recovering

Ashley went back to school today for the first time in a week. She still has a bit of a cough, but other than that is back to her outrageous teenaged self.

I am slowly recovering also. I'm still on nebulizers every 4 hours - enough prednisone to bulk up any wrestler (Yes, I know it's not the same type of steroid :) - Tamiflu - antibiotics - and cough medicine. But, for the first time in a week, I am also starting to feel a little more human. I am even hungry tonight!

I promise to be back to my regular blogging schedule beginning Monday!

Today I am thankful for better living through chemistry!

Justice For All?

This was really hard for me to believe - Washington, D.C. - you know, the seat of our American government - the place where the Americans With Disabilities Act was passed - has NO wheelchair accessible taxi cabs.

But it's true. From the Washington Post on November 10th:

"Two taxi companies -- Yellow Cab and Royal Cab -- will put their first wheelchair-accessible vehicles into service in December, and the firms should have a total of 20 cabs that can handle wheelchairs in service by January.

The federally funded project, which the National Capital Region Transportation Planning Board initiated last year, also will receive matching funds from the D.C. Taxicab Commission. None of the District's current 6,500 taxis are equipped with a wheelchair ramp or lift. Most of the neighboring jurisdictions have accessible taxi service, including Arlington, Montgomery and Prince George's counties and Alexandria. "

Thanks for the heads up, Lucy!

Today I am thankful for the antivirus software on my computer which caught yet another nasty piece of malware today.

Special Exposure Wednesday

The evil H1N1 flu has hit our house...but at least Ashley was able to get some rest - even if it did require a thumb.



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

Today I am thankful that Ashley seems to be over the worst of the flu. One more day at home and then back to school.

Sick Ward

Sorry, but I will not be posting for a couple of days. Both Ashley and I have the swine flu, and it's all I can do to get up and sit at the computer - much less think of anything coherent to write.

Hopefully I will be back soon, but in the meantime, be sure to visit some of the special bloggers listed on the right side of this blog.

Today I am thankful for Tamiflu, Gatorade, Ibuprofen, cough drops and Puffs Plus tissues.

Social Services - Part 2

I left the social services office with a very heavy heart. I knew from my years as a police officer that a lot, a whole lot, of bad stuff happens to children. In fact, seeing so much of that was one of the reasons I decided police work could not be a career for me. But seeing it again at the social services office had no less of an impact than when I was an officer.

During the meeting with Corey’s social worker, she told me that the health department, just two buildings away, might have H1N1 shots available. My children have appointments this coming Monday for their shots, but I have not been able to find one yet. So, I decided to give the health department a try.

As I approached the building, I noticed a father and his twenty-something daughter also heading into the building. The daughter had some obvious physical disabilities – I would guess cerebral palsy – but she was able to walk, albeit very slowly and carefully, next to her father. The almost vacant, innocent look in her eyes and the expression on her face led me to believe that she also had cognitive impairments.

They entered the building ahead of me, and once greeted by the receptionist (and I use the term greeted very loosely), the father said, “My daughter, Louella, needs a flu shot.” The receptionist said, “We are only giving flu shots to pregnant women. Is she pregnant?” Louella’s father said, “If I say yes, can she get the shot?” The receptionist said, “Like I said, we are only giving shots to pregnant women.” Louella’s father said, “Well then, she’s pregnant.”

Louella seemed to find this exchange quite funny, and when she looked at her father and grinned, the room seemed to light up like the sun bursting forth after a week of rain. Her father returned her gaze and the love in his eyes seemed to say, “Don’t worry Baby Girl – Daddy will take care of you.”

The nurse was called to administer the shot. Louella stood very still and strong while her father wrapped his arm around her waist. He thanked the nurse when she was done, and I swear, if he had a hat on, he would have tipped it.

Louella’s father offered her his arm. She linked hers in his and they left the building. I knew I wasn’t going to get a shot that day, so I left after them. As they were walking back to their car, Louella’s father said, “I love you, Lou.” She looked at him and I knew he understood that she was communicating similar feelings.

As they pulled away in their car, I noticed their license plate. It read, “ILOVELOU”.

Today I am thankful that when my heart is heavy, God chooses to lighten it with a very special message.

Social Services - Part 1

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

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

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

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

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

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

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

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

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

Part 2 tomorrow….

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

Special Exposure Wednesday

Our cats were thrilled as usual to see Halloween roll around again. Can't you tell from the looks on their faces? Say 'hello' to LobsterCat and ChickenCat!





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

Hope For The Future

The belief in the inner beauty of each and every human being is at the heart of L’Arche…and at the heart of being human… We do not discover who we are, we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.

-Jean Vanier, Becoming Human



I believe my biggest fear in life is what is going to happen after my death – happen to Ashley.

Ashley has made great strides in her short life. Doctors said she wouldn’t live – then said she wouldn’t walk – then said she would never communicate. From infancy, they recommended institutionalization. As my regular readers know, those doctors were very, very wrong. But, Ashley will need support throughout her life.

Just as Helen Keller needed assistance, so will Ashley. So, my challenge is figuring out how to ensure that assistance even after I am no longer able to provide it myself.

My experience with run-of-the-mill group homes is not good. Even under the best of situations, I don’t know of any group homes that are equipped or knowledgeable enough to support a person with deafblindness. My oldest son has tossed around the idea of establishing a group home, a group home done right, when he graduates from college. But that idea is mingled with a lot of other dreams he has, so I can’t count on that happening. And, I often feel that it is selfish of me to expect him to continue to care for his sister after I am gone. I know without a doubt that no one could care for her better, and I do pray that even if he chooses not to be her lifelong caregiver that he will at least stay very close to her.

I was offered a glimmer of hope last week when I read an article about L’Arche, a group that enables people with and without disabilities to share their lives in communities of faith and friendship. I’ve visited their website and like what I see there. I plan to explore this option a lot more, but I’m interested if any of you know of or have heard anything about L’Arche.

I know Ashley is just 14 years old, but the time to start planning for the future is now, not later, in my humble opinion.

Working Miracles with Sight and Hearing

As the parent of a deafblind child, I guess I should be angry that Abigail Breslin has been cast to play the role of Helen Keller in the Broadway show The Miracle Worker. At least that is what the group, Alliance for Inclusion in the Arts, is telling me. AIA wants a deafblind actress cast in the role, saying that a deaf or blind actress would be able to imbue the role of Helen with her experience.

But isn't that what actresses do? Ms. Breslin is an accomplished actress. I would expect that she would thoroughly research her role, and I believe would do a fine job of portraying Helen Keller. In fact, one of my favorite versions of The Miracle Worker has Hallie Kate Eisenberg as Helen. I liked that version even better than the one with Patty Duke, who as we know is not deaf or blind.

I'm amazed at how many news stories I have run across in the last week about the Alliance for Inclusion in the Arts and their vehement objections. I'm all for diversity in every aspect of life but really, aren't there more important things going on in the world right now?