A Very Special Olympics Ceremony Helped By The WWE.

As our local Special Olympics Summer Games have come and gone, with much fanfare by families and supporters, our special needs athletes now take a break until the fall. It was a beautiful day so the Olympic Village was active, busy with athletes dancing, singing, getting their vision, hearing and teeth checked. Sports massages were available to all; a stop our entire family makes each year - in fact Will almost fell asleep during his. There was pizza, hot dogs and hamburgers to eat, with an announcer constantly reminding athletes and guests to 'not forget to drink water' since it was a hot day. Our opening ceremonies were great as usual with the Parade of Athletes, military personnel honoring the flag, the very special motorcycle groups (usually over 1000 bikers) ushering in the torch runners - this part the kids love the best. The Connecticut Special Olympics Summer Games had a treat -- WWE stars Mark Henry and Big Show arrived for the Opening Ceremonies. Since the WWE is headquartered in Connecticut, they have partnered with Special Olympics to bring more attention to the group and the benefits of supporting them. No matter where the Special Olympics are, it is a great group to support - if you cannot make a monetary donation, consider becoming a coach or a volunteer the day of the Summer Games -- it does the heart good!! I have been told by many a person who has helped that they have gotten back so much more than they have given to the athletes.

(picture from WWE community)

'The Ideal School' - An Inclusion School.

(picture from The Ideal School website) I saw a piece on the 'Today Show' about a school in Manhattan called 'The Ideal School'. It is an independent/private school servicing Kindergarten to Grade 8. It professes team-teaching, small class sizes, low student-to-teacher ratios. One of its main proponents is that it is an inclusion school. Under its 'Zenith Program': The IDEAL School welcomes children with a wide range of abilities, and those students who need some additional support are part of our Zenith Program. The Zenith Program includes one-to-one or group sessions of speech and language therapy, occupational therapy, counseling, and/or academic support. As part of our team-teaching model, each student has a learning specialist in the classroom to make curricular adaptations. Therapists, co-teachers, specialists, and the Director of Learning Support all work together as a team to ensure that goals, curriculum, instruction, and support services are individualized to meet each child’s needs and carried over throughout the day. In keeping with our mission, students enrolled in the Zenith Program are fully included in the school program throughout the entire day. There is no pullout from whole class instruction. Services are provided during our unique Elective Program. All students leave the classroom during electives to attend various enrichment classes (such as drama or chess) or to receive individual or group support. As a result, students needing extra support are not singled out, stigmatized, or forced to miss important academic instruction. When appropriate, students can also participate in specialized electives, such as Play Group or Study and Organizational Skills. One-third of the students at IDEAL participate in the Zenith Program. The program accommodates a wide range of needs and learning differences and includes children with learning disabilities, attention issues, Down syndrome, developmental delays, and on the autistic spectrum. The video from the 'Today Show' tells of how everyone seems to believe and support the fact that all students can learn together, in the same room, at the same time, even though some are special needs and have different ways of learning and need different types of help. So a subject is presented and each student learns about it in his/her own way, with help from a teacher, using whatever tools work for that student. They also support the fact that everyone learns from everyone else - not only the lesson but patience, compassion, self-confidence, acceptance.

Keeping Kids Safe Project.

At the last minute, I found out that the Keeping Kids Safe Project was fingerprinting children of all ages this Saturday. The Keeping Kids Safe Project is part of the National Safety Program that tours the country providing FBI Quality Digital Fingerprints to families. Of course, no one hopes they will have to use this information. The person takes a photo and prints using an inkless capture device. This is recorded on to a form that is given to the parent/guardian to take home where you fill out all the personal information regarding the child. The procedure is painless and only take about 5 minutes and there is no cost. There are other upcoming events on the Safe Kids Worldwide site, just type in your state in the 'search' box. I spoke with another mom who was in front of me who was happy to do this considering one of her children is also non-verbal and there were many other families doing the same. Although this was not specifically for special needs children, it was a great opportunity to take advantage of for the whole family. Take the time to bring the kids in and get it done.

Biomusic - A Program Being Tested in Canada.

(picture from Holland Bloorview website) I found this on the website for The Holland Bloorview Kids Rehabilitation Hospital website, a site I visit occasionally since I had the great pleasure of sharing a story with someone who works there, Louise Kinross - we traded stories of our sons. Although I have been trying to find additional information on this subject on the web and at certain medical websites I like to gather information from, this is the only site I have found that deals with biomusic and people. There are other programs out there that focus on something similar with animals. REGARDLESS -- I ABSOLUTELY LOVE THIS IDEA!!!!!!! They are testing technology so parents and/or caregivers can 'hear' children who cannot communicate, children with profound multiple disabilities or PMD. Just think of the possibilities of being able to 'tune in' to someone's moods, fears, anxiety, etc, someone who can't describe the situation him/herself or show it. At least get close to understanding that person's emotions. That’s what Dr. Patricia McKeever and a team of researchers set out to learn with biomusic in a small study conducted by the Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital. Biomusic is a novel technology that translates real-time autonomic nervous system signals including heart and breathing rates and skin temperature, into musical sounds. The team’s research, funded by a Norman Saunders Complex Continuing Care Grant from Sick Kids Foundation, sought to determine whether biomusic could change caregivers’ perceptions of their interactions with children with PMD. Special equipment collected body signals from each child using non-invasive electrodes on the hands, and a customized computer program transformed those signals into biomusic. After interviewing the parents and caregivers, it was found that their interactions were enhanced by the sounds from the biomusic. Lead author, Stephanie Bains-Moraes states "Since the biomusic technology enables us to ‘tune in’ to the physiological reactions of non-communicative individuals, we hope it may eventually be used to improve the interactions with and the quality of life of some of the most vulnerable members of society.”

A 'Soap Box' Story - What Do You Think??

A recent story on our local TV news program, NBC Channel 10, is one that gets me upset. A mom took her 2 daughters to a live presentation of 'Beauty and the Beast'. One daughter, aged 5, has a chromosome abnormality. She is non-verbal and expresses herself by clapping and squealing, especially when she is happy. Apparently during the performance, she got excited and the venue asked mom to leave where they were sitting because the daughter was 'disruptive'. The theater asked them to watch the show on a monitor in the lobby ( I have also heard that the family was asked to change seats - sit somewhere else ). According to the theater events manager, "So unfortunate and we're very sorry, but it is our policy is to make sure everybody is comfortable in the theater," Menders said. "I'm sorry she felt anyone was being rude, but we try hard to be respectful and courteous of everybody that comes into PPAC." We have all been to kids shows and they are anything but quiet. How does a little girl's clapping and squealing differ from kids who are yelling and trying to dance in their seats? Or constantly popping up from their seats? It is obvious to anyone with decent eyesight that this young lady is special needs. Can't we make some kind of emotional accommodation for her? Willie does the same thing when excited, including the flapping of hands. I have had my share of stares, comments, under-the-breath mumbling about his horrible behavior. But I have also had a good share of those people who understand and tell me 'don't worry about it'. So - I am putting this out there. What do you think?? Should they have left alone? Should the family be approached like they were? Was it right that they were asked to leave or change their seats? I would love to see your comments. You can see the video here.

New Rule That Schools Must Provide Sports for Disabled Students.

(picture from ABC News website) I found on the 'ABC News' website that the Education Department decided that schools need to provide the opportunity for disabled students to play school sports. They can join teams/leagues, if needed special accommodations can be made as long as it does not fundamentally alter the sport or give the student an advantage. If this cannot be done, then a 'parallel program' comparable to a tradition program has to be created. "Sports can provide invaluable lessons in discipline, selflessness, passion and courage, and this guidance will help schools ensure that students with disabilities have an equal opportunity to benefit from the life lessons they can learn on the playing field or on the court," Education Secretary Arne Duncan said in a statement announcing the new guidance Friday. So basically it means that schools cannot exclude disabled students IF they can keep up with their counterparts. This is not to change those sports or even guarantee a spot on the team for a disabled student. There may be some minor changes allowed, such as a visual cue for a deaf runner. The way the Education Department looks at it is that this new directive tells schools that it is a student's right to have access to intramural, interscholastic, and intercollegiate sports. Some states, Minnesota and Maryland, already have similar programs. One of our local high schools has a sports team that includes disabled students and according to one of the non-disabled students who plays - 'it is a lot of fun and the kids are really good'. I came across a few links for other sports for disabled that maybe people haven't thought of (please take the time to review each - I did SOME clicking around to take a quick look): Outdoor Sports and Leisure ; Adapted Sports for People with Disabilities; Sports and Recreational Activities for Children with Physical Disabilities. Call around to your local sports clubs. Sometimes these kids are looking for an outlet to feel 'normal' and 'the same as everyone else'.

Early & Periodic Screening, Diagnosis, & Treatment Benefits.

(picture from 'Family Voices') I came across this page in the booklet "Connecting the Dots.. A guide to finding services for people with disabilities in Rhode Island". This is from "Family Voices - Rhode Island's Family-to-Family Health Information Center". If you go on their website, it will give you a link to a national website and you can find resources in your state. Looking back, I do not remember any information being given to us for our first 2 boys that we adopted. Possibly it was due to the fact that they were in the adoption system and everything was all set up. This EPSDT program sounds like it should be something for people to take a look at, if they haven't already. Taken from the booklet page: "Title XIX of the Social Security Act provides for the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) of eligible Medical Assistance recipients under age 21 to ascertain physical and mental defects, and requires treatment to correct or ameliorate defects and medical conditions found. The Omnibus Budget Reconciliation Act of 1990 (OBRA '90) further mandates that under EPSDT, services will be provided for such other medically necessary health care, diagnostic services, treatment and other measures described in section 1905(a) of the Social Security Act to correct or ameliorate defects, physical and mental illnesses, and medical conditions discovered by the screening services, whether or not such services are normally covered under the Medical Assistance Scope of Services. Eligible individuals under age 21 receive Medical Assistance services consistent with EPSDT requirements." It also mentions a provision that the Medical Assistance Program has to pay for certain 'minor assistive devices' through EPSDT. I could not find anything that defines these devices on the local website or the national and I do NOT want to start guessing at what they might be. BUT -- the article did go on to describe what they are NOT. It does not include: devices or equipment permanently attached to a structure; ramps of any kind; lifts such as van lifts, chair lifts, or stair lifts; air conditioners; swimming pool or any type of whirlpool. Individuals must be under 21, not currently on a Medicaid waiver program that does provide for minor assistive devices, or the need for a device due to a documented medical need to be considered for this program. There are procedures to be followed as well: need a physician's letter, provider of services needs to submit forms, and Department of Human Services makes the decision. There is also skilled nursing, home health aides, and pediatric private duty nursing available. There is a process to go through first - assessment, problem identification (nursing diagnosis), planning, implementation (nursing intervention), and evaluation. I do not remember exactly if any of these services were provided directly since our oldest had a VNA nurse follow him to our house for about 3 years - she had already been with him for about 1 year. Our middle son just came with Early Intervention needs. So am I not sure how this all works but definitely should be checked out. See if your pediatrician is familiar with this, or your pre-school teacher/director.

Take Advantage of Pre-School & Kindergarten Screenings.

As the new year starts, I find myself with a little more time to do volunteer work since my job has slowed down. I received an email from a woman who runs our local Child Outreach Program . The program stems from the IDEA Act of 2004.

The following information is from my state - so check with your system to see about similar programs. For years while my sons were in elementary school, I did the usual volunteer programs -- book sales, bake sales, holiday shops, PTO/PTA meetings, helping the librarian, etc. I was also our school's Volunteer Coordinator through the 'VOWS' program (Volunteers of Warwick Schools) helping the teachers and principal with whatever was necessary. I did help the first grade teachers with some reading tests. As my youngest was registering for kindergarten, I was asked about signing him up for the screening, which I did. It was a great thing to do and I would suggest everyone check with their local school system to have it done. This gets me back to the beginning of the story. I liked it so much I signed up for the training and became certified to do the pre-school and kindergarten testing. The program is for ages 3,4,5. From the Rhode Island program -- Child Outreach Screening Programs educate families concerning typical child development; build community awareness of resources available in the areas of education, medical/family support services, child care; and identify young children in need of further assessment. Child Outreach Screening is provided statewide by local school districts in the following areas: vision, hearing, speech/language, social/emotional and general development. There is no cost to families for Child Outreach Screening. The goal of Child Outreach Screening is to provide screening for every 3, 4, and 5 year old Rhode Island child, each year prior to kindergarten. The screening takes about 10 - 15 minutes. It can be done in pre-schools during the time the child is there. We also hold clinics that families sign up for. Some children may have a hard time separating from their teacher or parent or whoever may bring them and we do our best to make them feel comfortable. The child can 'show' the person with them where they will be 'just in case mom/dad/teacher, etc needs them'. It is best if they are by themselves, they usually pay more attention to us if the adult is not with them. We tell the child that the adult has 'work' to do - papers need to be filled out while we play 'games'. We go along with the personality of the child. The majority of the children do very well and have fun - their great personalities come through and they can be very entertaining. The children are never pressured; we do understand if the child is having a bad day. We all do at times! If need be, another appointment can be scheduled and we try again. Results are sent to the parents usually within a few weeks and to their teacher, if they are in school. It is great information for the teacher, to see where the child's skills are in conjunction with the rest of the class so the teacher can be better prepared. It will point out areas that should be targeted. If there is a problem area, it is a great way to start a conversation with teachers, the school social worker for lists of community resources if needed, your pediatrician. It is not an IQ test. Catch an issue early and it has a better chance of being overcome. My youngest had to go to a Title 1 reading program starting in first grade. He was out by the second grade and has been reading very well since. Take advantage of the program if you can. Call your local school system and ask about it. A little extra help goes a long way.

A Truly Remarkable Young Woman.

I read a story recently about Rebecca Beaton, a 40 year old woman with cerebral palsy, who is very independent and wants it that way. She grew up wanting NOT to be considered disabled - graduating from a local high school and the a community college. Rebecca goes out into the community teaching people about those with disabilities, going to grade and high schools as well as colleges. Going out with her aide, Rebecca finds most people will talk to her aide instead of her directly since they see her in a wheelchair, only able to move her head. She then surprises those folks by speaking to them. Currently, she is living out of her home, in a group home doing as much as she can for herself. Rebecca uses a head stick to write to people, and making and selling greeting cards - one card can take her an hour or two - using a computer keyboard. Why do all this? Rebecca says: "I love to make people happy." and "I want a good quality of life." Way to go, Rebecca!!!!

Helpful Shoe Laces.

I saw these in an email from Caring.com. It was an article about whether caregivers liked these elastic shoelaces, called Locklaces. I have not seen these in person but seem to be a great idea. We have all seen this type of closure before but now to put them on shoes, is a great idea, seemingly perfect for those who have issues with finger dexterity and strength,and balance problems if you have to bend over for a period of time. What caregivers liked about them??? 1. They maintain tightness. "I used to tie my shoes with the traditional method, even using the rabbit ears technique if the situation called for it. No longer! Lock Laces are extremely easy to use on any pair of shoes," says Abel. "It easily tightens and loosens at the simple push of a button. I even worked out for a few hours and they maintained the same tightness the whole time! I enjoy not having to tie my shoes again and again." 2. The pull-and-lock mechanism is easy. "The pull-and-lock mechanism provides ease of synching up and tightening shoes, as well as releasing the lace for easy of removal of shoes," says Fred. "The Lock Laces also help a person quickly put on shoes and remove them, saving time and effort." 3. They turn any shoe into a slip-on. "They sort of turn tie shoes into slip-ons," says Victoria. "Because the laces are elastic, they stretch as needed. I do not need to worry about falling/tripping, since the laces are secured to the top of the shoe and stay out of the way." "No more fumbling with trying to tie laces and keeping them tied," adds Carlene. What caregivers did not like about them??? 1. Illustrations on the package aren't clear enough or big enough. "I had a lot of trouble getting them put in my shoes properly. The instructions were not only confusing to me but I had trouble seeing them. The illustrations were tiny, as was the size of the font used to print the directions," says Carlene. "If I hadn't had my son and daughter-in-law here to help me, I probably would never have gotten them in my shoes." "Instructions were not very clear," adds Fred. "Would recommend a YouTube video or online link demonstrating how to initially lace, apply locks, and trim to size." 2. Some seniors may have problems setting them up. "Snapping the two plastic pieces took a little pressure, which some people may not have in their hands," says Betsy. The article suggests: You Should Try Lock Laces if . . . You (or your loved one) have manual dexterity problems. You (or your loved one) have issues with your joints and hands. You're looking for an easy alternative to constantly tying your shoes. You want an easy way to slip sneakers on and off.