Speaking of Group Homes

Almost every weekend, during outings with my family, I am asked if I run a group home. I guess it's understandable. My kids are almost all adults now - ages 21, 21,19, 17 and 16 - and other than Chip, my birth child, none of them look like me. In fact, none of them look like each other. Corey is Native American, Jessica is Latino, Ronnie is African American, and Ashley is of Italian heritage. Chip and I sport a blond, German look.

The first time I heard it, it bothered me, though I couldn't say why. Then I started thinking that if folks thought treating young soon-to-be adults with respect, love and caring was what group homes did, I shouldn't disavow them of that notion.

Of course, my years of experience with group homes is anything but what I just described. See Monday's post. But I want people to expect and believe that group homes can provide a positive, loving environment for people with disabilities. I want neighbors not to worry when a group home is planned for their neighborhood. I want families to feel peace when their loved one makes the decision to move into a group home. And most importantly, I want people with disabilities to be happy living in a group home, ensured of their safety, in a warm caring environment that is bright and sunny and clean. And I intend to make that happen.

I'm only a few years away from retirement from my career government job. When I do retire, I plan to transform my current, handicapped accessible home into a group home and prove that it can be done the way I described. I don't think it will be easy, but I think it will be worth the effort.

What do you think?

Dreading The Next - Revisited

I wrote a post last week titled "Dreading the Next." This past Saturday, an article and a video appeared in the New York Times titled "Autistic and Seeking a Place in an Adult World."



Though their disabilities are different, Justin, the subject of the NYT article, and Ashley face similar challenges in the future. And like Justin's parents, my struggles in helping to facilitate a good future for Ashley at times seem overwhelming.

This article does an excellent job of relating those challenges and struggles. It's a long article, very long, but worth every second of your time to read. There is also a video which shares a lot of Justin's story, but not as much as the article itself.

If you are the parent of a soon-to-be-adult with significant disabilities, I don't think you will regret taking some time to read Justin's story....

Autistic and Seeking a Place...

(article and picture courtesy of the New York Times)

Dreading The Next

I think I’ve lived in a state of denial the past couple of years when it comes to thinking about Ashley’s post-school life. She is 16 and we do have some time, just a little time, to figure things out, but I am at the point of worrying now.

Research shows that employment for people who are deafblind and multiply disabled is not good. That same research shows most of those people end up just living at home or in a *facility*, unable to find work.

I hope to be around for a while yet, but I do still worry, and worry seems like too mild a word for my emotions on this subject, about what will happen with Ashley when I am no longer around. I don’t believe she will ever be able to live independently, and even if she could acquire those skills, would she be able to find a job to support herself? And, with my experience with *facilities*, I don’t believe there would be anything worse that could happen to her.

The school system is not doing a very good job of preparing Ashley for life after school. Yes, we have functional goals in her IEP, but the school’s investment ends when Ashley leaves school, and sometimes even sooner. There is a one size fits all mentality in the school when working on job skills. “let’s all go wipe down the table in the cafeteria” for example. I have yet to see a real interest in discovering what Ashley prefers to do, what tasks interest her, and what tasks drive her crazy. If her preferences are not factored into the training, it seems to me to be a total waste of time.

In Virginia, we do have a rehab services agency that purports to serve people with disabilities who want to find a job, and training for a job. That agency won’t become involved until the last year of school for the student, and at present, have shut their doors to all because they say they are out of money. It’s too late to wait until the last year of school. And my experience with this particular agency is that they will work with the more mild disabilities, but send them someone with multiple, less common disabilities and they throw up their hands.

So, any of you in a similar situation as mine, what have you done or what are you planning to do for the post-school years for your child with multiple or less common disabilities? Is your child going to stay in school for as long as possible? Have you found private agencies that serve adults with disabilities to be more proactive than government-run agencies? And, at what age did you start working on a plan for your child?

Are you as worried as I am?

A Baseball Wish

I think I may have mentioned before that Ronnie has been approved for a wish by the Make A Wish Foundation. We talked and met with Make a Wish prior to his surgery, but everything was put on hold until after the surgery and until the doctor said it would be ok to grant the wish. Well, that has happened!

Now we just need to work out the details and make plans. Ronnie's wish is to meet Adam Dunn, the first baseman for the Washington Nationals baseball team. The Nationals is his favorite team, and he gets so excited every time he sees Adam Dunn on TV. When we took our weekend trip to Baltimore earlier this summer and saw the Baltimore Orioles play the Nationals, we came home with dozens of pictures - almost all of them of Adam Dunn!

I really hope that the Nationals will make Ronnie feel welcome, and that Mr. Dunn especially will understand what a positive experience this will be for Ronnie. I'm pretty confident this will all happen, but even more so after viewing this video that Lucy from Life In Forsyth:

Local Youth Hit The Field With Washington Nationals.

Wish Upon A Star

I contacted our local Make A Wish organization to see if Ronnie would qualify for a wish. He does, and the Make A Wish folks are starting to process all the paperwork. I'm so excited for Ronnie, but I'm also running into a wall. I can't seem to make him understand that wishes can be big!

I guess coming from a past life of not having much - living in a very disruptive home with his mother - and then in several foster homes - wishes don't come easily for him. He's probably wished for things in the past and those wishes never came true.

So now if I ask what he would wish for, he would probably say chicken nuggets.

I've shown him the website for Disney World. I've talked to him about other trips. We've reviewed the wishes that other children have made. But he just doesn't seem to grasp the idea. I have some ideas about things he would really like - being a superhero for a day, being a character in a comic book or a cartoon, having a go-kart track in the backyard - but he just looks at me like I am crazy.

I've shared these concerns with the Make A Wish staff, and they assure me that they have folks that will talk to Ronnie and help him figure out what his wish is. So I'm going to stop fretting about it, and just let them do their job.

But I wonder, have others of you faced a similar situation, and if so, what did you do to help your child dream and wish for something special?

Johnny Needs Us

I met with Social Services today about a young man I would like to have join our family. John (not his real name) is 15 years old, totally deaf and has spina bifida. He has a background that includes abuse and neglect, and he has not always had the sign language support that he needs.

Because we are a signing family, it seems to be a match made in heaven. Social Services believes our family would be a good placement. I believe it would be a good placement, and that we have a lot to offer John both now and for the future. But there are two large obstacles to making it a reality.

Obstacle one is that our bathroom is not set up to accommodate his wheelchair. Although we had a bathroom remodel done about a year and a half ago, and many accessibility features were put in place, those features were specifically designed to meet Ashley’s needs. Because the remodel was the result of a lawsuit against my state’s Medicaid office, we had to confine the changes to the specific features Ashley would need to practice and complete her ADLs (Activities of Daily Living). Wide doorways were not a part of that remodel.

So, the bathroom needs further tweaking, and some of the tweaking is pretty major construction. Social Services has tentatively agreed to fund those changes which is a good thing. If that tentative agreement becomes concrete, obstacle one will be removed.

The second, and even bigger, obstacle is that I need a wheelchair accessible vehicle, but I have a four door family sedan. When my older van was gasping its last breaths last summer, I held off as long as I could, hoping to find a child and know specifically what kind of vehicle I would need. But, when no child was identified at that time, I chose a vehicle based on cost and suiting the needs of my family at that time. So changing vehicles at this point in time is not an option for me.

Social Services has said they absolutely cannot provide a wheelchair van, and I understand that. But it’s a real shame that John may miss out on finding the perfect (OK , that’s my opinion) family. Social Services is going to explore finding a charitable organization that might be willing to donate a van, but I feel like that is a long shot.

Please keep John and our family in your thoughts and prayers, and let’s all hope for a positive outcome to this situation. I have a bedroom all ready for him, and my children and I have our hearts and arms open just waiting to welcome him home.

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.

Chill, Baby

If I hear one more time that the primary purpose of high school education for children with disabilities is to prepare them for work, I am going to scream. I wrote last week about Ashley not getting History or Science in high school because ‘she doesn’t have a history or science disability.” Her IEP draft was full of ‘vocational’ goals and objectives, and if the school district staff asked me yet again if I had ‘connected’ with vocational rehab agencies for Ashley, I might just have told them where they could stick their sheltered workshop job.

I understand that our children with disabilities may need a little more time to prepare for the workforce, but seven freakin’ years??? That seems a tad excessive to me. Heck, I can start listing the names of many non-disabled high school students who were not prepared for adulthood and the workforce when they left high school. And, are our children to have no other focus in their lives once they turn 14 years old? That’s pretty sad if that is what the school district believes.

Why shouldn’t our children with disabilities be entitled to the same work-life balance being promoted for those without disabilities? (Work-life balance can also be applied, imho, to education-life balance).

According to a survey conducted by the National Life Insurance Co., four out of ten employees state that their jobs are "very" or "extremely" stressful. Those in high stress jobs are three times more likely than others to suffer from stress-related medical conditions and are twice as likely to quit. The study states that women, in particular, report stress related to the conflict between work and family. Do you think our children with disabilities can also suffer from stress? Heck, their lives are often nothing but stress.

The number of stress-related disability claims by American employees has doubled according to the Employee Assistance Professionals Association in Arlington, Virginia. Seventy-five to ninety percent of physician visits are related to stress and, according to the American Institute of Stress, the cost to industry has been estimated at $200 billion-$300 billion a year. What do you think the costs will be if a person with a significant disability experiences stress and burnout?

Ashley loves art – and music – and plants – and shopping – and traveling – and reading – and math – and science. Restricting her enjoyment of those things during her remaining school career – approximately seven years – will not a happy future employee make. And don’t even get me started on the preconceived notions about the type of work our children with significant disabilities will be targeted to perform. Trust me, if you ask Ashley to stuff envelopes for eight hours a day, five days a week, envelopes won’t be the only things getting stuffed.

School districts need to lighten up. Let our children with disabilities enjoy their high school years as much as non-disabled students. Don’t start them down a path to stress and then wonder why it costs so much to provide care for them later in life.

Chill, baby….

What's In Your Crystal Ball?

I need your opinions on something.

Once a child with disabilities reaches middle school and beyond, schools place a bigger emphasis on vocational skills - preparing the children for jobs once school is over. IDEA 2004 definitely supports that:

In “Findings” of IDEA 2004 (Section 1400(c)), Congress found that “30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children,” educating them in the regular classroom so they can “meet developmental goals and, to the maximum extent possible, the challenging expectations that have been established for all children and be prepared to lead productive and independent adult lives, to the maximum extent possible.” (Section 1400(c)(5)(A))

But how does a school district and an IEP team determine what are appropriate vocational skills for a student? I would like to know your experiences, and if your child is too young for you to have addressed this issue yet, what are you expectations for the time when your child is old enough to discuss transition and vocational skills?

Here are some examples:

Do you feel it is appropriate for students with disabilities to have jobs in the school such as wiping tables and chairs in the cafeteria - or delivering mail and newspapers to the teachers - or cleaning up a classroom at the end of the school day? How about sorting utensils or putting toothbrush holders together? Or, learning how to use simple tools like a screwdriver and hammer? Would you like to see your child take care of plants in the school building or clean up/feed pets like hamsters or fish in the school?

Has your child had a great vocational training experience while in school? If you child is older and out of school, did the skills taught in the school contribute to their success as a young adult? Or, did you feel like your child was set afloat at the end of his/her school career with no skills to support productive employment?

What are your dreams for your child as they related to adulthood, employment and independent living? Do you feel your school team shares and understands your dreams?

And finally, are you frightened what the future holds for your child with a disability? I am, and that is why I need help with all these questions...

Shall We Dance?

Ashley is in the eighth grade this year – her last year in middle school. And as is the tradition at our middle schools, the eighth grade dance is coming up in just 3 weeks. I can’t begin to tell you how much I would like for Ashley to go to the dance, but there are some obstacles.

First, the dance is from 7pm till 8:30pm. Ashley, because her daily seizures wear her out, is usually asleep no later than 6:30pm each night. I would be willing to let her stay home from school and sleep all day though if she wanted.

Secondly, while not all the 8th graders go with ‘dates’, I really don’t want Ashley to go alone. A lot of really wealthy families live within a few miles of my not at all wealthy neighborhood. Inclusion is not a familiar word to many of those families. Parent’s attitudes are passed to their children, and as a result, Ashley would probably be excluded at the dance. Unless…she went with a ‘date’. Justin is a classmate of Ashley’s and he has been very protective of Ashley during the last few school years. But how do I ask his mother if he can go to the dance with Ashley? Both Ashley and Justin would need adult support during the dance, but I also think they would greatly enjoy each other’s company.

And the final obstacle? I don’t think Ashley really cares about going to the dance. Yes, she would love a new dress, but she would be just as happy going out to dinner in that dress. Because most of the regular education students have ignored her all year, she doesn’t have friends she would look forward to seeing. And, because school itself has not been a positive experience this year, going back into the school building at night is not something that would thrill her.

So, do I ask Ashley to make one of my dreams a reality, or do I let her be her unique and special self, making her own decisions and living life her own way? As sad as missing the dance might make me, I believe I know the answer to that question.

Friday Videos

I'm taking the lazy way out today and not writing anything. Instead, I am sharing some of my favorite web videos. Enjoy...

First up, the following is a Thai Pantene commercial. The story of a deaf girl who learns to play the violin against all odds. And, of course she has beautiful hair :)



Secondly, in these tough economic times, a girl has to get her priorities straight :)


null - Watch more free videos

Please no one show this video to Ashley. If she sees it, she will never stop asking me where she can sign up for the next jump.



HOPE YOU ALL HAVE A GREAT WEEKEND!

I Want More Time With You...

I so look forward to spending my nights with you, but I hate having to leave each morning.

You wrap me in a warm cocoon, and support me in ways you will never know.

I want to spend more time with you – lots more time – but can’t because of the demands of my life, especially the need to care for my children. But you always understand that, don’t you?

I find myself thinking about you, fantasizing about you, especially in the late afternoon when my work day is drawing to a close but my time of being needed by my children is just beginning.

Along about 8pm each night, I start to constantly glance at the clock – mentally calculating the number of hours and minutes until I can be with you again. Those minutes and hours seem to drag by.

And on the weekends, I silently pray my children will sleep just a while longer – a few more minutes until I have to leave you again, ending my escape to that utopia to which you take me.

I’m very happy that I don’t have to share you with anyone. You’re always there just waiting for me and me alone.





Ahhh yes, my warm, snuggly bed – I will always need you and want you. I hope you know that!

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’….

De-GRYS of Love!

Some of my coworkers make fun of me when I tell them I have to watch Extreme Home Makeover each Sunday night because it always gives me the opportunity for a ‘good’ cry. They can’t understand why I want to end each week crying, but it’s the ‘good’ part of the crying that makes the difference.

Last night’s episode featured the Grys family, and no other Extreme Makeover show touched me the way this one did.

The Grys family has fostered 250 children over the years. And, not just any children. They specifically request the infants with the most severe disabilities. The children that are placed with them usually have just the slightest of chance of survival. But the family keeps coming back for more.

Currently the family included the mom and dad, two twenty-something birth children, two fifteen year old twin girls diagnosed with Fetal Alcohol Syndrome and an eight year old boy diagnosed with brittle bone disease and dwarfism.

Three things about this show impressed me more than any of the others. First, the dad was wearing a shirt that said, “Who are all these kids and why are they calling me Dad?” I’m sure that sense of humor helps sustain this family through even the most difficult of times.

Secondly, the dad also made the statement, “If someone tells me a kid will never be able to do something, I will spend the rest of my life proving them wrong.” I’m thinking this man is the triplet I never met. I have a twin, but his making that statement shows me my mother must have had triplets and just forgot one at the hospital.

And finally, at the end of the show, the builder for the family’s new home made the statement, “If you dream it and believe it, you can make it happen.” I love that person and I don't even know her.

God bless you, Grys family, and everyone at Extreme Makeover Home Edition who helped make this family's dreams come true.