eSpecially Ben

If you’ve been following the news, you may have heard about a recent court case in Texas that threatens a law that protects people like Ben from entering institutional facilities such as nursing homes instead of living at home or in a group home. Community integration and community-based services have been at the core of Ben's life – these program are the reason why he thrives now as a 23-year-old man. A  threat to these services is a threat to so many individuals with disabilities. SUMMARY Texas v. Kennedy changes how disability care rules are handled.  What the rules were: In 2024, the federal government made rules requiring states to help people with disabilities live in their own homes and local communities instead of forcing them into nursing homes or institutions. What the court decided:  Alaska, Florida and Texas sued to get rid of these rules. Many more states were involved in the beginning but withdrew due to advocacy pressure . The federal government agreed to...

 Although advocating can sometimes seem like a never-ending job, you are fighting for the rights of your child and there is a light at the end of the tunnel. If you are lucky, there are a few lanterns along the way held by people who will aid you in your journey. Ben's paperwork to apply for a toileting system has been held up since March. Unfortunately, I did not know it, and I was under the impression that the 3-6 month wait for approval was well underway. When I posed the question to the vendor about when we might expect the toilet, I was told that the paperwork needed was never completed by the therapy company. Once I got involved and sent emails out to light a fire under a few people, the paperwork was completed and sent in. Later, when I asked what the heck happened, it seems that there was a disagreement between the vendor and therapy company about who should fill out the paperwork. REALLY? Is that what this was about? AND YES I AM YELLING. Please take...

In 1992, when Nicholas Keenan was nine years old, he wrote a book about his brother, Owen, who is, “physically and intellectually disabled.” By using photos of the two brothers in typical situations, the book has a realism with which children can relate easily. A simple message is clear – this is my brother, this is what his day looks like, this is how I interact with him and I am glad he is a part of our family. This book could be used in a few ways: Home   Read it with your children to get a discussion going about special needs and disabilities – whether you have a child with a disability in your family or not. Starting a dialogue within your family is one way to handle uncomfortable situations and inappropriate language. It gives parents the opportunity to hear how their children feel about interacting with children with differences. Although the book does not address difficult feelings or topics, it alludes to Owen needing a lift to get in and...

Last fall, I spent a large number of my hours fighting the recommendation for the school board to close Ben's school. I spent countless hours talking on the phone, sending emails, attending meetings and even more time worrying and stressing about the situation. What exactly was I fighting? I did not want Ben's current school to close. I wanted him to stay where he was with the same teachers, same students and same environment. Why did I want these same things? I was happy with where he was and I knew the teachers, students and environment. We were comfortable there. I was really fighting the unknown. I made the assumption that the unknown would be bad. Two weeks ago, I wrote about Ben's new placement for the fall 2011 and how I was thrilled with the new school. I met with the principal for two hours recently. Her philosophy about inclusion blew me away. Her background is in working with special needs children and she lead an area of the Exceptional Children before...

On the way into the YMCA this morning, a woman commented to no one in particular, about my kids not wearing hats and coats. They were wearing sweatshirts and fleece jackets. At this point, she had not seen me because I was with Ben getting him out of the car, but I had heard her words. When Ben and I were a few feet behind her, she asked Logan where his coat and hat were. Logan responded, "My Mom did not give me any to wear."  Thanks Logan. The woman, possibly not knowing that I was behind her, said, "I will say a prayer for your mother." She repeated that mantra a few times. Once she realized that I was right behind her, she scolded me about the hats, gloves and coats. I did not say much back to her. Then she said, "And look at his hands (meaning Ben) , they are all balled up because he is freezing." Still relatively calm, I managed to say that he is a special needs child, his hands are often in that position and he rips off hats and gloves immediatel...

10 Special Needs Media Moments of 2010 is taken from the About.com website specifically for families with special needs. This is history in the making. When a topic becomes a focus in TV shows and the media, the masses become aware of issues that are important to a specific group of people. It is the most common way to educate, if not the best.

On Veteran's Day, the boys had the day off so we went to the park. There were only a few other kids there with us. While running and climbing on the playground equipment, the other kids got into a name calling contest that involved only one word - "Retard." I do remember using that word as a kid - I flung it around with words like stupid, idiot, dummy. By the time I was in college, I had more sophisticated shorter words to use, so the "R word" left my vocabulary. At the park, I thought for a second about saying something to these kids. But what would I say? They saw me with Ben and I don't think they were connecting the use of their word with him. It was something they heard somewhere and were trying it out on each other. I chose not to say anything, but it did awake in me the need for more information about the debate going on about the words, Retard and Retarded . Although I am aware of the  R-Word campaign, I was unsure of its focus. Is it abou...

One of the first mornings I arrived at Ben's camp this summer, a man was out front of the recreation center on his cell phone. He was in a wheelchair, but managed to open the door for us. The next several mornings, he was outside when we arrived for drop-off. I later learned from him, that he waited each morning for us so he could help me. He also was there at pick-up time, but inside the building working with the teen camp located there. I learned that his name was Felix. It became routine for Felix to open the door for us and keep an eye on Logan and Sean. We became friends in the way you do when you see someone twice a day, everyday, for 7 weeks. We talked, shared pleasantries at first, and then got into more meaningful talks as the summer progressed. Felix is 31 years old and has Spina bifida. At the same time, the recreation director for the building was also around. At first appearance, she was gruff, unfriendly and had no interest in engaging in conversation with me. So...

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It appears that the school officials are determined to displace the current students in Ben's school for an alternative program. The PTA is fighting hard with petitions, letters, emails and calls. We are all attending a community forum tonight. Ben will be in attendance with me. These are the words I plan to read if called on to speak: Hi. My name is Ben. I am 7 years old. I am a 2nd grader at Oakhurst. I am in a SAC class, special academic curriculum. Please help  me save our school. I am learning there. I am surrounded by people who really care about me and have created an environment where I am welcomed and loved. My mom knows I am safe at Oakhurst. She also knows I enjoy it there. I smile when I get on the bus and I've been known to hug my teacher very tightly when I see her. Please save my school for me and for the other children like me at Oakhurst. Thanks.

Logan's school has been saved! Our neighborhood and school community came together quickly and showed the Board of Education how they felt about the Montessori school. A sigh of relief! For one moment because Ben's school must be saved too. Here's my letter to Board of Education: Dear School Board Member: It has come to our attention that changes within the school system are being discussed.  The information shared through websites and the media is disconcerting. This letter is intended to express our considerable concern to the Board of Education and put forth our request to maintain O--- Elementary's current status. We are parents of three boys, two of whom are of school age. Ben is a second grader at O--- Elementary. When it came to choose a school for Ben when he was four years old, O--- came highly recommended. We have not been disappointed. Ben is in a Special Academic Curriculum (SAC) class. Ben does not talk and uses a walker to get around. For Ben an...

Ever been asked the question:   Who would you save if you could save one person from a sinking ship?   Then the person gives you two impossible choices - your Mom or Dad, your brother or sister, your spouse or child (well that's not so impossible). Anyway you get the idea. In my September 30th post, Never A Dull Moment , I talked about how our school district is making proposals for changes in schools throughout our county. Both Ben and Logan's schools could be affected - moving Logan's school program to Ben's school; therefore, displacing Ben's program. Right now, all my energy and efforts are going toward saving Logan's school. My hope is that if it is saved, then the ripple down effect will save Ben's school. But there are no guarantees. Logan's PTA and our neighborhood is an organized community of parents, neighbors and businesses. The group will lead a coordinated fight with rallies, letters, emails and representation at community forums and p...

Earlier in the week I actually had time to finish my 2009 Christmas scrapbook pages, something that's been on the "to do list" for, well, 9 months. That fact should have been a clue that something was coming. And of course it did, when I woke from a nap (I had time for one of those too) my friend called to deliver the disturbing news. Our school district announced in a meeting this week that they may be closing schools throughout the county. This means displacing students, moving programs and basically a big headache for families and students, not to mention the staff who work at these schools. For us, Logan attends a public Montessori school within walking distance of our home. This is one of the schools slated to close. They plan to move this program to the school Ben attends, about 20 minutes from our home. And what does that do to Ben? Not sure, but probably displaced to another school in the county. So our neighborhood is on fire, getting a plan together to fig...

I attended Ben's school's PTA meeting this week. I am on the board as the Special Needs Liaison. I came up with that title last year, and I am still not sure what exactly my role is. Last year, I spent most of my time learning how the group worked and seeing what the school needed. I know from experience that newcomers with ideas can easily be shot down if they do not know the customs of the group. I planned a fund raiser for the school, made posters advertising Box Top collection, wrote Ben's teacher's monthly newsletter and helped the physical education teacher with Water Day. I feel like I did my time. So this year, I felt more comfortable asserting myself by planning an event for the students with special needs. Monkey Joe's is a place where kids go to play video games and run, jump and bounce through obstacle courses. Or if you are Ben - you go there to eat pizza and drink a slushy. Every third Wednesday night, for one hour, is free for children with speci...

I attended the Be the Bridge Rally last Friday. Be the Bridge is a new organization made up of at least 55 city and county agencies that work with people with mental illness, developmental delays or substance abuse issues. The group's mission is to promote awareness and find creative ways for the public to help, especially in times of budget cuts that can have a devastating impact on this group of people. Not really knowing what to expect at this rally, I was pleasantly surprised by the turnout of people, the excitement of the crowd and the participation from adults with special needs. Everyone waved their hammers each time a speaker said the word, "bridge." Attendees made posters and signs to get people's attention The speakers were motivational, either telling of personal survival or promising support through political and community avenues. The County Commissioner tried a risky move and sang a few lines from a "A Bridge Over Troubled Water....

Here's something to attend if you live in the area,  or copy the idea for you own region of the world: “Be the Bridge” Rally Friday, May 21, 2010  1:00 – 3:00pm  Marshall Park, Charlotte , NC We are a group of service providers, advocates, consumers, family members and community partners who have come together to support individuals with mental illness, developmental disabilities and substance abuse in their own recovery. We believe that everyone has the right to a full, satisfying and meaningful life. Due to major budget cuts in both local and State funding, we believe that now, more than ever, we need to work together as partners in building "bridges" with each other and with natural and community supports and resources. We can no longer rely on Federal, State and/or local funding to carry all the weight of supporting and meeting the needs of those with mental health, developmental disabilities and substance abuse issues. As a great...

In 2006, three families started a neighborhood club. At that time, our main reason for forming was to setup a babysitting cooperative. I would watch their child one afternoon and then they would repay me the next day or week. The group has since grown to 25 families, a website, guidelines and all types of activities and annual traditions. Today, school was out so I put out an invitation for parents to come over with their kids to make turkeys using felt, feathers and glue. In the end, the house was full of seven boys and one girl – running around, creating turkeys and watching movies. Ben was in the mix of all this, although he absolutely refused to make a turkey or watch Peter Pan. He followed the crowd or spent time in his room watching “Bob”, depending on his mood. On three separate occasions, Ben pulled the little girl’s hair. In his defense, she has lovely hair and the first two times, it was within inches of his hands. The last time, she had learned her lesson and sat a dist...

Early in my career as Ben’s mom, there were some situations where I was adversarial in my responses and reactions to circumstances where I thought Ben’s needs were not being met. With guns loaded, ready to fire, I would take out anyone who I thought might not be giving Ben the best possible care. Instead of making the situation more positive, I may have alienated the people who could really help me. I realize now that almost everyone wants to provide the best they can for Ben or any other child that has a special need. Like with anything that is sensitive and very personal, misunderstandings happen easily and can add to an already emotionally charged issue. The parents have emotions about what they expect for their child and others have emotions about the unknown. Fear, uncertainty, worry are all floating just beneath the conversations you may have when you are asking for assistance for your child. Being an advocate means partnering with others, building relationships and being aw...