Tuesday, June 25, 2013
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.
Wednesday, June 19, 2013
(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.
Saturday, June 15, 2013
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.
Friday, June 14, 2013
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.”
Saturday, June 8, 2013
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.
Friday, June 7, 2013
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'.
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.
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.
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!!!!
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.
Department of Rehabilitative Services:
Updating the family calender, I am reminded of Will's IEP/transition meeting coming up in January. Seeing that, I have to go through his file of 'stuff' I have already started to apply for and/or need to update - to bring with me so I can find out what the next steps will be. He leaves school this next December - on to bigger and better things.
I find in the handouts from the transition seminar, information on our Office of Rehabilitative Services (ORS). The national website is under the Department of Education. The office offers career planning for students with disabilities, they help prepare eligible people to prepare for and obtain employment. Each person is assigned a Vocational Rehabilitation (VR) counselor who helps the individual and his/her family to make good choices in their planning.
The VR counselor offers assistance in a variety of ways: *providing career information
*assisting in choosing employment goals, services, and training
*develops an Individualized Plan for Employment (IPE)
*provides information on programs and services for transitioning
*helps with guidance and counseling
*vocational assessment & community job trials
You need to apply to ORS. Ask your child's teacher who from ORS is assigned to your school and a parent or guardian MUST attend the meeting if the child is under 18 years old. If the counselor determines that a vocational assessment is needed, arrangements may be made through school and done during school hours. The results will be shared with family, school personnel, an evaluation team and the counselor - all can help the student develop career goals.
ORS may even help pay for post-secondary training, certification, license, or college degree, books, supplies, specialized tools - you get the picture. It may even go as far as helping to pay for bus transportation and gas. Assistive technology can possibly be included or software if needed for a computer to complete assignments.
ORS offers a lot of help and direction for those getting ready to transition out into the work world. Make sure you contact your local office or school for any information you may need.
Three Cheers for Michael Garcia!!!
(Milo's picture from 'Today Moms' website)
I came across a story on "Today Moms" about a waiter in a restaurant in Texas who defended a 5 year old boy with Downs Syndrome. Milo was at the restaurant with his family, who are regulars, and was showing off his new words and telling Michael Garcia, the waiter, about his birthday. At another table nearby was another family who are also regulars. They asked to move away from Milo's family and a man sitting there said 'special needs children need to be special somewhere else'. To which Michael replied 'I am not going to be able to serve you Sir.' YES!! Good for you!!! More people should be like you Michael.
Michael was afraid he would lose his job but more people have been turning up at the restaurant to shake his hand. There have been lots of postings on the restaurant's Facebook page. The family has been going there for so long, Milo and Michael even have a special way of going to their table when the family arrives -- Michael always carried Milo.
As many other families, they have had their share of stares and parents pulling their children away from Milo when out, like on a playground. We too had something similar happen when Will was young. He was about 4 and we went to a family type of restaurant, sat down next to a party of 4-5. Will, who is autistic, is non-verbal and back then had no way to communicate except to make a noise (AH-AH or similar) when he wanted something. A woman at that table told us we should leave him at home and that she too had special needs children and they would never act that way when out. My mother got on her 'grandmother high horse' and told that woman if she didn't like the noise, feel free to move to another table on the other side of the restaurant - her grandson is fine and that's the only way he can express himself whether she liked it or not!! The wait staff kept on serving us and was attentive to Will. We're going back probably 16 years ago, so keep doing what they were doing was probably comparable to a member of the waitstaff standing up to a customer.
They stayed put but were not happy and the evil looks continued.
We can only hope that this ignorance will someday disappear. As Milo's mom puts it “Maybe next time they’ll think twice before they utter those words or say something derogatory about somebody else.”
I attended an iPad workshop that Will's teacher had told me about. It was given by a local company, Tech Access, that evaluates and gives special needs students communication devices to use while in school and to take home during this time as well. There were only a few of us there but this seems to be a useful tool for those specializing in Speech Therapy and are teacher assistants working with special needs students (one other person was a parent).
While the instructor went over all the basics of how to set it, use it, make folders, delete icons, etc., we did touch upon some apps that are good for special needs. Going through the App Store can take time - as he said - you really have to be specific or you get thousands of results. There are free apps and those with a small fee, as well as those that can cost upwards to $200.00 (US dollars). The program we use for Willie is called 'Assistive Chat' which I think was about $35.oo US dollars. Others at the workshop were using 'Proloquo2Go' which runs about $200.00 It depends on what your child can do -- "Assistive Chat" is more for someone who can type and knows words; Prologuo has pictures that you can use along with words. One way to help with this dilemma is to go to AppShopper. This is NOT connected to Apple. There you will find a lot of apps for iPads and iPhones as well as Macs, along with their price changes (if applicable), new apps, app updates. Check it out - great site!! One drawback, even on the 'iTunes store', is that the majority of apps are for younger children, not high school. Even though he does work like a younger student, the pictures and manner of presentation is too young for him. So if you have a pre-schooler or elementary aged child -- you are good to go!!
One good one for those who like to 'see' the results of an action -- 'Songify'. Speak or breath into your Android device and the app will turn the action into a song.
Also, he mentioned a website called 'Moms with Apps'. While this site will include all sorts of apps for all varieties of skills and needs, it also invites app developers to share their programs -- see "App Friday". I checked out 'App Resources for Special Needs', went to 'Mashable article on iPads and disabilities' and not only found apps for children but a couple of them for seniors: one memory practice one that was created by someone who's mom has Alzheimer's and two for medication reminders (though one was NOT available in the US store). You can check out a previous post regarding 'Tech Items for Seniors' that had ideas from 'Senior Savvy' regarding the same.
Of course YouTube has everything!!! The instructor was talking about different types of a stylus pen for people who cannot type and have a hard time holding onto a pen - type device. Of course you can buy one but you can also make your own. Check out a variety of YouTube videos to make one. TechAccess also has instructions.
Spend some time in the 'iTunes store' and the 'AppShopper'. Check with your child's teacher and speech therapist so see what will be good. Find a workshop in your area. Time well spent!
Will's New iPad for Communicating.
We picked up an iPad for Will this weekend and downloaded 'Assistive Chat' for him as his communication program. There were 3 choices for a voice output, so I played each for him and let him choose - one was male, one female and one 'mechanical' for lack of a better word: Ryan, Kenny and Heather. He chose Ryan.
There were choices for the voice output to 'speak' every letter, word or sentence when done - we chose the latter. As a person types, there are predictive words that come up, so you really do not need to spell the entire word - just tap the appropriate tab.
As per usual, Will has attempted NOT to use it - this is his usual M.O. When something is new, he puts off using it, especially when he feels there is no need. "Mom knows what I am talking about!", I am sure this goes through his head - which I do but a lot of people who don't know Will's version of sign, have no clue what he is saying and THIS is what he needs to be prepared for.
I think once he gets to school and can see the other ones that are being used, he'll get into it. He is also more apt to follow his teacher's constant request to use it, rather than ours.
Getting Excited About Communicating the 'i' Way.
Today we had our transition meeting regarding how things stand for Will - what we need to do, who we need to contact, etc., since he will be done with school in December of this year. It seems we are on-track, no additional school testing needs to be done, unless some social service agency needs it. Right now, we wait to hear from one agency; we are not sure if we need it since he has been given a case worker at another one similar in mission. Vocational assessment will probably be done in the summer.
Anyway - I spoke with his teacher and asked about an iPad for Will to use instead of his current communication device. (See older post - "Communication Devices"). She was all for it; he had experimented with another student's a short time ago and Kerry said it went well - he learned it quickly and handled the touch screen keyboard nicely. So we will be getting one soon.
(picture of Will's teacher's book)
Kerry also gave me a book to look at in the meantime. I figured we would be going with the app "Assistive Chat" but "Sentence & Question Builder" looked good too, maybe a nice sister app. The book she gave me is called "Apps for Autism" by Lois Jean Brady M.A.,CCC-SLP, , 2011 by Future Horizons. You buy the apps from the 'iTunes' store. The book has over 200 apps that help improve communication, behavior, social skills, etc.
The book covers A LOT of information. Lois discusses how technology is changing so fast. As she puts it: 'New mobile technologies for people with autism are creating new opportunities at an exponential rate. The message is that we can create tools that can make profound differences in the trajectory of people's lives and in education in general'. 'Thank you Apple! Finally, devices that support communication, scheduling, academics, social interactions, video modeling, and leisure time are wrapped up in hand-held, super, cool packages. Individuals who cannot use a mouse or keyboard can use the iPad, iPhone, and iPod touch because there is no disconnect between the screen and the keyboard/mouse.' As she also states, there is a big difference in price between the older communication devices (which can run $8 - 10,000 dollars and take months to come in after ordering) and the new Apple products that run more or less around $500 and have apps that you download and use right away. Yes - there may be a charge for some apps, some are FREE. Still, it's a whole lot LESS money. I would suggest you speak with your child's teacher and speech/language person to discuss good options.
I AM NOT PROMOTING ONE DEVICE OVER ANOTHER. JUST SHARING WHAT I AM READING AND OBSERVATIONS AND WHAT I AM THINKING!!!!!!
I just want to mention some of the categories in the book and some of the apps. The book gives current app prices (prices may change over time) and gives website addresses for each app so you can look it up. I checked out a few. One I could not find, nothing came up, but the others looked great.
There are 12 categories in the book, each with plenty of apps to choose from. I'll just list a few -- apps to get the word(s) out; sign language; articulation; concept development; hygiene & pre-vocational; graphic organizers & visual supports. Apps are: autism shapes, small talk letters, numbers, colors; idress for weather; uzu; body language; is that glutten free?.
I highly suggest you try to find the book ($29.95 US if you want to buy it). I think Kerry said you can find all the apps on the iTunes store if you have an account and they constantly add more. I can't wait to try Will's!!! Our work is set out for us this weekend. I would love to hear from anyone out there using these already - give me/us your feedback -- please!!!!!
Robots help kids with autism.
Robots Help Children with Autism:Now Dancing Robots to Teach Autistic KidsRobots'>http://www.msnbc.msn.com/id/41967936/ns/health-mental_health/t/robot-teaches-autistic-kids-interact/">Robots Teach Autistic Kids to InteractRobot'>http://www.huffingtonpost.com/2011/03/09/robot-helps-autistic-kids_n_833321.html">Robot Helps Autistic Kids
Transition and work
As I continue to do the paperwork and contact the appropriate agencies for help, I am also looking at agencies that help find work. There are several. There are companies that hire people with disabilities; my list is for those looking for something else.
I also think of an agency that interviews the person, their family and friends to see what he/she might be interested in doing on their own. I like that idea. This started me thinking, my husband would say 'look out' or 'I could smell that smoke', about possible types of jobs that could be considered a business that they could do, work from home or a family business. I understand they cannot make a lot of money due to SSI regulations so it would be part-time/on a small scale. These can also be done using a mentor. There are agencies that have folks who want to mentor a challenged child/adult or use a Best Buddies person.
Here are some possibilities - just ideas I toss around in my head especially after I leave a place or talk to someone who owns a business:
*bake cookies or cakes to sell to friends or family (this one came up during a seminar - someone's son was doing it and loved it);
*walk a dog/take care of a pet for neighbors or family;
*work with a local small business -- we go to a local car repair business, I think a small 'stand' could be set up selling coffee and snacks, on a Saturday for instance. After visiting mom at the nursing home and hospital, how about working with a local gift shop setting up a place on the weekends selling some items or take some items from the hospital gift shop around to some floors and help sell. The young businessman or woman keeps a percentage of what they sell. At nursing homes, they can sell on weekends or family nights;
*collect scrap metal, cans and/or bottles and sell them. They would be helping the environment as well;
*if they are artistic do some art work and place it in local businesses;
**this one I had started trying to work out a plan to do for Will and maybe a few others in his group (or for his work group in school) but due to family illnesses and my work gearing up I did not get far. I still think it is viable. The idea came from my mother actually -- she was commenting on how she has a hard time getting to the cemetery to put flowers on family graves. So what about a business where people can go for them? They advertise in churches, funeral homes; they charge a straight fee to order either fresh or artificial flowers or a flag; who goes can clean the stone a bit and maybe say a prayer. Take a picture to show their client what it looks like.