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.