A 'Go To' Seat for Special Needs Children.

From the 'Special Needs Jungle' site, I received notice that the charity, Cerebra, is standing behind a seat making it easier for families to go out with their children who require more care, who have some disabilities.

The 'Firefly Go To Seat' is a support seat created in association with James Leckey Design and Cerebra. According to the site, it offers postural support and stability; it is washable and versatile and can be fitted to any dining room chair, supermarket seat or bike. Another great thing is called the 'Magnificent 7': each Go T0 Seat will give 7% of the sale to Cerebra. To see a video, click here.

Ornaments Made as Gift to the City of Providence.

Will came home with an ornament that was made in class for a project that I had no idea they were doing. I am not sure of all the designs but this is what he came home with, one he made to keep.

There was a note explaning the project - these ornaments were made for the Christmas trees on display during Waterfire. His class made about 200 to help.

As the rest of the note reads: 'as a gift to the City of Providence & its residents, Waterfire will host a 2 night Christmas lighting & the First Annual Festival of Trees this December. Not just a gift to the people of Providence, this lighting will benefit the Providence Rescue Mission & their pledge to support the homeless & needy of Providence. To decorate the many trees in Waterplace Park, Waterfire asked local schools, students, classrooms and after school

programs to create ornaments to be put on the Christmas trees at Waterfire. Ornaments can be made in any style to reflect a holiday, tradition, school/group pride, or other festive theme. After the lighting, the trees and ornaments will be donated to local families in need of a Christmas tree.' I thought this was such a nice idea and wish I had known about it earlier. Thank you to our teachers who decided to follow through with this and send quite a lot to make other people's Christmas a little brighter.

A Young Girl Sharing with Her Parents Who are Deaf.

I usually post about adults taking care of special needs children. This post that was on LifeNews.com shows a hearing 5 year old sharing the Christmas songs from her school pageant with her deaf parents. Claire Koch has had American

Sign Language in her life from the beginning, being a KODA - a kid of deaf adults. So she decided to surprise her parents by signing all the songs. She really gets into it; while all the other students are doing their moves, Claire was signing along with great facial expressions -- you can tell she really got into it. Take a look at the video. I'm sure you'll agree she is having a great time entertaining her parents.

A Moving Video from Pro Infirmis - Disabled Mannequins.

I found a wonderful video made by the Swiss charity, Pro Infirmis, a charity for this disabled. "Because Who Is Perfect? Get Closer" documents how mannequins were modeled specifically to several people's physical disability and handicap. It shows the process of how it was done and the great reactions of these people seeing their

'bodies' for the first time. The Daily Mail from the UK ran a story on how these mannequins were put on display in a Zurich store window to “raise awareness of people with disabilities, specifically in the image-obsessed worlds of fashion and retail.” Time magazines article states that this was done in honor of International Day of Persons with Disabilities on December 3rd.

The models are radio host and film critic Alex Oberholzer, Miss Handicap 2010 Jasmine Rechsteiner, athlete Urs Kolly, actor Erwin Aljukić and blogger Nadja Schmid. It is interesting to see the process of all the measuring and cutting and shaping to get the exact duplicate figure of the person. You also get the see the reactions of those passing by when one of the mannequins in placed in the window of a store. Check out the video here.

Cheerleading Is Now Special for These Girls.

Apostrophe Magazine online had a post regarding a special cheerleading team in Georgia. There was a pep rally the night before the boys football game and the girls from the Sharon Springs Cheerleading Association were on the field. New to the group was a team called the 'Phenominal Falcons' made up of special needs cheerleaders.

"We started a special needs squad for the girls with some disabilities and challenges that may not have had the opportunity to be cheerleaders," said Maureen Headrick, who organized the squad this past summer. Honestly, at the beginning of the season, we weren't really sure how many cheers they were even going to know." The girls learned quickly and cheered for the teams every Saturday. Some of the girls hope to cheer in high school. They seem to love the team, not only because they have overcome some issues, but they like hanging out with the other girls. In fact one girl, who needs extra help at school, has taken to helping other girls on the team. As Kate Geiger's mom says, "Kate's a very social little girl," Beth said, "very bubbly and very determined. But one thing that it has helped her is becoming more confident with her peers. And she's actually looking at it as an opportunity to help some of other girls on the squad. And she doesn't have the opportunity at school, she's usually the one being helped. So it's been great for her. She'll go over and, if somebody's having trouble, she'll pat 'em on the back or cheer 'em up. She's had a really good time with that." As the organizer of the team says, which sums it up nicely: "It really has brought home the message to me that it's not about winning or losing, it's about the effort that you give," said organizer Maureen Headrick. "The strength they show, the courage they show, to get out here and cheer in front of these crowds like this, it's so incredible.... They have the abilities. We just need to give them the opportunities." To see the video, click here.

Financial Planning for a Special Needs Child.

I am not a legal professional and laws may vary from state to state. Please speak with a professional in your area for the rules and regulations that would apply. The following is just general information that I have come across which may or may not apply to your family situation.

Frank & I have been going over what to do, planning for Will as he starts into adulthood and adult services. We have consulted with a local attorney since we heard of 'special needs trusts'. I found out about it from another mom during a workshop. She gave me the name of her attorney and we met. Trusts, as far as my understanding goes, do not affect SSI payments or any services the special needs child/adult is getting. Social Security Administration said the same when I asked - it is not counted in their assets, even if you have a large sum of money there. The thought was that a 'pooled trust' is best. From the website of "Plan of Massachusetts and RI" (which is the group she suggested had the best plan for us) comes the definition: There are two different types of pooled Special Needs Trusts based on who “owns” the money that funds the trust. If the money belongs to the trust beneficiary, it will go into the MARC Special Needs Pooled Trust. The MARC Special Needs Pooled Trust is funded with assets belonging to the disabled individual, often obtained through an inheritance, personal injury settlement, or personal savings. If the money belongs to someone other than the trust beneficiary, it will be put into the PLAN of Massachusetts and Rhode Island Third Party Special Needs Pooled Trust. The PLAN Third-Party Special Needs Pooled Trust is funded with assets belonging to families or other third parties to benefit a person with a disability. The third-party trust can be funded immediately or in the future through an estate or life insurance. A trust with a group of people as trustee was the best plan since that way, our other sons (especially if they are not in the area) do not have to worry about paying Willie's bills that are not covered by his services. The group overseeing this trust would also take care of any paperwork, tax filings, etc., of course for a fee. What has stopped us at the moment, is that while we can set this up and not fund it, once it is funded then the fees start. Taking a look as to who may be putting money into this in the future, we fear - in our situation - that the fees would eat up the money in a short period of time. So right now, we are holding off doing this. Another website, "M & L Special Needs Planning" out of the Washington, DC area, offers some areas of concern that you may want to investigate for yourself, talking to a local professional. At my meeting, we did not address # 3. 1 - A Comprehensive Special Needs Financial Life Plan 2 - Government Benefit Counseling 3 - Insurance Needs Analysis Planning This website also provides some interesting statistics: Reasons for Special Needs Financial Life Plans -- Nearly 54 Million Americans cope with special needs and the rising associated expenses, according to the National Organization on Disability. Nearly one-fifth of all Americans—more than 54 million men, women and children— have a physical, sensory or intellectual disability, according to the National Organization on Disability. More than 41 million Americans, or almost 15% of the population age 5 and older, have some type of disability; according to 2007 Census survey data. Some 6.2% of children ages 5 to 15, or 2.8 million kids, have disabilities, the Census Bureau found. The U.S. Census Bureau says about 20% of Americans between the ages of 16 and 64 suffer some form of physical, mental or emotional impairment. Many of them are outliving their parents thanks to improved care medical technology. Over 75 percent of special needs adults are without employment (Grassi, S.G. Special Planning is Needed for Families with a Special-Needs Child. Journal of Practical Estate Planning, 39-51) Households containing at least one family member with a mental disability are also marked by the highest poverty rate, 32 percent, within the U.S. (Erickson, W., & Lee, C. Disability Status Report: United States.) The need is there to plan, this is something we can all agree on, but what type of plan is best will be best determined by a discussion with a professional who is familiar with looking long term and who knows the laws. As the attorney I spoke to said, if we wanted to speak to someone else - no problem; just make sure that person knows the rules and regulations and most of all the language that is used to set the trust up. It is specialized, especially since you do not want it interfering with any income and/or services that are being provided to your son or daughter. If you do set a trust up, anyone wanting to give money to the trust does exactly that -- writes the check, leaves an inheritance or life insurance money TO THE TRUST, not to the person. Even birthday money has the trust's name on the check. This trust plan is a good idea - make sure it is a good idea for your family.

Services for Special Needs Children

(picture from 'Good Therapy.com) I was going through folders, looking to clean up papers, when I came across some fact sheets on different services that can be provided either in the home or community. One is 'home based therapeutic services, HBTS). These are medically, necessary, & intensive services that can be provided whether it is just more convenient or necessary to be in the home. Our state department of human services states that these services: 1 - maximizes the child's ability to live at home; 2 - the child can participate as a valued member of their family & community; 3 - improve the child's ability to function in the least restrictive level of care; 4 - improve the child's ability to transition to adulthood. Eligibility is based on: 1 - child being Medicaid eligible; 2 - child up to 21 years of age; 3 - living with their family, legal guardian, or foster care; 4 - child with a chronic & moderate to severe cognitive, physical, developmental and/or psychiatric conditions with a DSM-IV or ICD-9 diagnosis within the last 2 years; 5 - child who has not benefited from other intensive outpatient services; 6 - child who may be at risk for hospitalization or out of home placement without HBTS; 7 - child who is enrolled in a CEDARR Family Center and have a Family Care Plan. To continue on with this program, it is not only the child and agency who have to participate. The family as well has a role & responsibility: 1 - family must ensure that the care setting is safe; 2 - families work with the HBTS agency to develop the treatment plan. The family must be present & participate in a majority of the time set in the treatment plan; they also must be present when siblings in the home need to be supervised; must have a parent goal on the plan; keep track of child's behavior during non-HBTS time. It is the role & responsibility of the HBTS worker to: implement the Treatment Plan by providing one-to-one therapeutic services, reinforce the identified goals on the IEP or IFSP, keep progress notes on the Treatment Plan goals, provide information to families & clinical supervisor on goals, attend weekly supervision sessions with clinical supervisor, attend on-going training sessions held by HBTS agency. Please talk with your local social service agency, teacher, or doctor to see if these services can be of help. These rules & regulations may change by location, so make sure you have all facts to see if you qualify. Looking for a PASS?

Support for a special needs employee.

On the 'Today News' website there was a story about a young man, Chris Tuttle who is 28 and lives is upstate New York. He has Asperger's Syndrome.

Chris works at a store and came home one day telling his parents there was a customer who berated him for scanning items too slowly. This customer then went to the store manager complaining that Chris worked too slowly. “When she was mean to me, it made me really upset and sad, and tears were about to fall down my face,’’ Chris told TODAY.com. His sister Jamie Virkler decided to ask a few people to post some positive comments on Facebook for him, since he loves social media. She said she was only expecting a handful of people to respond. At press time there were over 100,000 likes and 15,000 comments coming as far away as Australia and South Africa besides his friends and store customers. The effect was so positive, Chris felt able to go to work the next day. He has received such an outpouring of support - people have waited in his line (even if others are clear) just to shake his hand or give him a hug. “It makes me feel blessed and loved and cared for,’’ Chris said. “They made me feel a lot better afterwards. It was overwhelming, and it was really supportive for all those people to be in my line, shaking my hand, hugging me and giving me nice cards.” “The community has come together and made him feel good about himself,’’ Jamie said. Even though the woman who yelled at Chris has not come forward. Jamie is hoping that people will think about life from the other person's eyes before getting angry at someone like Chris.

Help from a 'bag of tricks' for those long rides and waits.

'Tis the season for long lines - at the stores, restaurants, road trips, maybe even just a visit to the doctor. Even with children who have no special needs, we bring along a 'survival kit'. In the case of 'About.com' it is called a 'bag of tricks'. As we all know, children with special needs have less of an attention span, have a hard time transitioning, finding ways to amuse themselves, and may have trouble avoiding meltdowns with all the aforementioned going on.

'About.com' reminds us to make sure you remember your ABCDs when packing your bag: Amuse, Bribe, Comfort, Distract. Whatever number and type of item you do take, all of them must be at your immediate disposal to use. There are both concrete and interactive ways to fulfill your ABCDs. They are not fancy. Depending on your child, some of these may not work. Here are their ideas to try, to see if they hold any merit for you: • Toy cars • Deck of cards • Flash cards • Little notepad and pen • Dice • Fidget toys • Finger puppets • Keys • Coins • Photos • Hard candy • Pretzels • Small storybook • Puzzle book • Raisins • Animal crackers • Doll • Magnetic travel game • Crayons • Stickers Then there are the more 'interactive' ones: • 20 Questions • I Spy • Taking a walk • Getting a drink from a water fountain • Looking out window • Saying something silly • Tickling • Blowing a raspberry on his or her arm • Clapping games • Pushing hard against each other's hands • Rock-paper-scissors • Whispering secrets • Asking questions • Word games where each person adds an item, alphabetically, and the next person must remember the whole string of words • What color am I looking at? • Tell me three things you did today • Let child choose what to do next • Math facts • "Dots" game: connecting dots on a paper to make squares • A is for ..., B is for ... • Hide something in fist -- guess which hand? • Play with child's hair We adults get antsy with all the standing and waiting around so we can imagine how hard it is for our children. For those who can speak, these ideas may even open up a communication line with your child, learning about school and friends, hopes and dreams. Maybe even questions about what they think about, what do they think they would like to do after graduation, what kind of food would they like to learn about or grow. For those who are non-verbal, bring paper or their communication device and talk about what they like -- food, drinks, TV shows, music. Maybe download music on an iPad or iPod. Depending on where you are, you can get silly and dance!! Windowshop if you can get away. Also if you can, plan trips when you feel the wait lines will be the shortest. We are all in this together and if anyone watching is not happy with the behavior, OH WELL!!! Santa is watching for good behavior!!

The Touchdown of a Lifetime

There was a wonderful story on Life News about a middle school football team in Olivet, Michigan that secretly schemed to let a special needs player score a touchdown. Teammates of Keith Orr plotted to let him score during one of their games. The coach was not even in on it. Neither was Keith's parents. It took weeks of planning but finally during one game, the ball was

intentionally downed at the 1 yard line. Watching the video, apparently the people in the stands were not happy. But then came 'the Keith special'. Someone hiked the ball, it was given to Keith and his teammates surrounded him, protecting him so he could run it across the goal line! Needless to say, everyone went crazy. Please take the few minutes to watch the video - you can see even one of his teammates has changed his attitude and outlook toward Keith. He says: 'it was to make someone's day, someone's week, to make him happy'. Keith has learning disabilities, has problems with boundaries but is loveable, hugging everyone he knows. His teammates wanted to prove he was part of the team and meant a lot to them. As wide receiver, Justice Miller, said “He’s never been cool or popular. He went from being a nobody to making everyone’s day”.

Unique therapy animals to help.

(picture from MSN) Today on MSN there was a story about a variety of animals being used for therapy. 'Ok so?' you say. Yes, I have another post regarding this earlier on, under "Feel Good Stories" and "Dolphin Therapy". Your point?? Well, I came across a few other animals helping folks and thought I might share the information. Of course there is the loyal dog, coming in all shapes and sizes, man's best friend, ready to help at the call. How about a

miniature horse helping those who are blind or have cerebral palsy since they live longer than dogs? Elephants are being cared for by autistic children in Thailand improving social skills, daily activities, posture and balance. Capuchin monkeys help quadriplegics because of their dexterous hands and they live a long life. You can see from the top picture, parrots can work with people who are bipolar. In this case, the gentleman would try to calm himself when he felt an episode coming on by telling himself 'calm down'. The parrot learned to mimic him and also say 'calm down' which he found soothing. The soft tactle sensation of petting a duck can help those with dementia. Know people who feel lonely and isolated in a hospital? Have a llama visit them. Having a cat nearby if you suffer from temporal lobe seizures may help you identify one before it happens. Twinkie the pet therapy pig in Florida helps a boy with Down Syndrome.

Iguanas can help mood disorders. Social anxiety disorders can be helped by pigmy goats. Kids having difficulty reading seem to relax more when reading to rabbits. One woman has found her pet rat sitting on her shoulder can warn her when back spasms will start. We all know our pets love us unconditionally. They help in many ways - even sitting with us on the sofa at night after a long day makes us smile, allowing us to pet them slows our bodies and minds down. They can sometimes can act faster than medicine.

With Thanksgiving approaching, giving thanks with a spin.

(picture from About.com site) I saw on About.com a list of 10 reasons why we should be thankful for a child with special needs. We all have our days where we wonder why things happen the way they do, wonder if there are ways out there for situations to get better.

But kids are kids are kids, no matter what state of mind or physical condition, they still manage to bring a smile to our faces when they say or do something totally out of blue that makes no sense to us but makes them laugh and laugh and laugh. You look at them and anyone else around thinking - what is going through their head?? In a few minutes, you are laughing too maybe because you just thought of some bizarre way they interpreted a word, something they saw or heard. Terri Mauro from About.com gives us 10 reasons, some silly some emotional, why we should be thankful for our special needs children. 1. You never have to worry about worrying over nothing. Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about. 2. Developmental delays = more years of hugs, kisses, and little-kid sweetness. My 13-year-old still wants to sit in my lap, give me hugs, and tell me he loves me. What mom of a sullen teen doesn't secretly wish for the same? 3. Maybe someday, Ty Pennington will come build you a house. Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space. (Are they still on??) 4. Any little milestone is a cause to throw a party. Your child works hard for every step, sit-up and syllable, giving you lots to be excited about. 5. Every day is a learning experience. Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure. 6. You have the privilege of putting several doctors' children through college. After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride. 7. You meet a better class of parent in waiting rooms and support groups. Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive and sure of their priorities. 8. You have an iron-clad escape excuse for any occasion. You'd love to stay at that boring party, crowded event, endless church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it -- who's to know?) 9. Coming up with new strategies every day keeps your brain sharp. They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection. 10. Your blessings will always be fully counted. Other parents may take the gifts that their children bring for granted. Not you. Not ever.

An emotional rollarcoaster ride with this story. Conjoined twins reach their teenage years : amazing.

I watched this video from LifeNews.com and a whole host of feelings and thoughts raced through me. I wasn't sure how to react or feel or whether to even share this. I know I sat there dumbfounded, not knowing what to say or do after I watched it. Abby & Brittany are such an inspiration! After hearing from them, you can't even think they are disabled. Their parents and family are an inspiration! They have the girls doing anything and everything they want to live a normal life. Tell me you are not touched in some way by these girls. There are no words left to say except, 'watch it' here....

Gold Goes to Willie and Team & Congrats to the Special Olympians

The Annual Special Olympics Bowling Tournament took place today for several of our local teams. I would like to extend congratulations to Willie and his team for winning gold. Everyone had a great time - the olympians as well as the cheering crowd made up of family and friends. We cheer loud for the strikes and spares and extend our 'good try' for the gutterballs. The kids do a great job and so look forward to this, practicing hard for weeks. I would like to extend my thanks and gratitude for all the volunteer coaches and extra volunteer staff that helps our kids get the most out of the time spent bowling.

Most have been with these athletes for years. Now we look forward to spring -- track & field. Then the Summer Games!!! For those of you who may not be familiar with Special Olympics, its mission is to 'provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community'. It started back in 1950-1960 by Eunice Shriver who started a summer day camp in her backyard for children with intellectual disabilities, focusing on what they CAN DO, not what they cannot do. July 19-20, 1968: the First International Special Olympics Summer Games held in Chicago, Illinois. February 5-11, 1977 saw the First International Special Olympics Winter Games in Steamboat Springs, Colorado. The Law Enforcement Torch Run was started in 1981 and is the movements largest grassroots fundraiser. It is a great organization to have your children join or for any adult to offer their volunteer services and help coach. So many coaches agree and will tell anyone they talk to -- they get more out of it and more back than what they give the kids. To read more, click here...

A Checklist of Sorts on Halloween with an Autistic Child

I was looking around at different sites and came across "About.com Autism Spectrum Disorders".

There was an article on 'How to Enjoy Halloween with Your Autistic Childe' by Lisa Jo Rudy. Since we are so close to the day, I decided to just copy the list that is there, for all to see and read, no commenting. Hopefully this may help some families out there at this last minute. I guess - 'better late than never!! 1: Use videos and books to prepare your child for Halloween expectations. There are many Halloween options out there, so choose the ones that are most like your own real-life situation. 2: Together, decide what costume your child will choose. Take into account not only his or her preferences, but also sensory concerns. For example, a Spiderman costume may include a full mask - which can become overwhelming. Some children love face paint, but others can't take the sticky sensation. 3: Make a plan that you can stick to. Choose a time to leave the house, plan a path, and know what will happen when you come home (can he dump the candy on the floor? What may he or she eat? If the candy is not a good choice, what substitute treat will she get?). 4: Keep it simple. Knowing your child, what's reasonable to expect? If he can handle just one house, that's fine. Know that, even when you see other kids running up and down the street, it may not be the right choice for your child. 5: Create a social picture story. Use digital photos, images from the web, or other sources to show and tell exactly what your child will do. Include all the steps, not forgetting that he must knock at the door, say "Trick or Treat!" and "Thank You!". 6: Read the social story together, not once but as often as possible. From time to time, toss in a clinker: ask - "what if no one is home?" Help her understand that it's ok to skip a house, to take a piece of candy from a basket (if that's ok with you), and so forth. 7: Practice, practice, practice! Put on the costume many times before the Big Night, and work out any kinks. Role play the entire treat or treat scenario as often as you can. 8: Act out a number of scenarios so your child has a small repertoire of possible responses. For example, what should she say when someone says "You look beautiful (or scary or creepy)!" What if you don't like the treat that's offered? What if you meet kids you know? 9: Scope out the neighborhood ahead of time. Do you see any decorations that might upset your child? Flashing lights that might trigger sensory reactions? If so, consider skipping that house (or visiting ahead of time) to avoid melt-downs. 10: Consider recruiting peer support. If your child with autism has no siblings (or his siblings have other plans), consider recruiting another typical peer to go house-to-house with you. Explain to that child and his parents that he will be helping your child to understand Halloween a little better. You may be surprised at how helpful another child can be! 11: On the big night, remember to be flexible. If your well-prepared child suddenly rebels against his costume, consider letting him go in just a silly hat. Remember that Halloween is for fun - and it really doesn't matter what he wears or how many homes he visits. 12: Take pictures. Get excited. Have fun! Even if you're only going to one house, make it an event. When you're done, put together a memory book that can help you prepare for next year. This makes a lot of sense and I wish I had seen it earlier, to give us more time to prepare but some preparation is better than none. Happy Halloween!!

Getting Closer to 21, Getting Closer to Adult Services.

Well, I have been busy trying to keep a handle on Will's transition to adult services. In fact, as a surprise, Will's teacher has

asked me to speak at an after-school parent meeting on transition!!! This would be talking to those parents starting or are in the process of this. Hope I can rise to the occasion. Anyway -- just to update on what has transpired to bring us to this point (hopefully the information can help you): as I have mentioned before, Will turns 21 in December. Over the summer, we visited several agencies that we were interested in. (See other posts on this blog for 'transition') Our state is making changes in the work program for adult services, so many agencies have stopped taking names/referrals. But off we went anyway! After seeing 4, I spoke with his teacher to see if she had any feedback on these programs since other students have moved on to these local places. She told me about a couple that she knew about and told me something I did not know -- you can divide your time between 2 facilities if you want!! Just what I wanted to hear -- we like a couple of places for different programs they offer. One was good for employment and the other had great social/community involvement. So I was able to ask his Developmental Disabuilities Case Worker to put in a request/referrral for placement with the 2. In a couple of weeks, we find out one is not taking new names so the search started again. We did find another agency and we are trying to get in there, this one has a nice community involvement. With the other one for work - we had to have our pediatrician to fill out a medical questionaire and I filled out a social history form, which the case worker forwarded to them. One day, his case worker came by to visit with many more papers to sign including SSI and Medicare. Now we wait again while they review the paperwork, assign it to a case worker on site who reviews it, then we sit for an in-take meeting. We have to figure out which agency is the primary one, to write up his Service Plan first (using his Support Level evaluation from his SIS); then the secondary one does their part. Also, we have to make sure we have transportation: one place will probably provide their own since they are close. As for the other, he may have to take a special transport bus supplied by the state. As we wait, we need to keep options open, as these may stop taking referrals. I hope that since we have gotten this far, we may be good. Service providers need to have things in place 45 days before the adult turns 21 to go. I know I started early but I thought I would rather be early and have his name there than wait. Hopefully there will not be a long time from when he gets out of school to when he starts somewhere. A few people in these agencies have agreed with me, that it is good to start early because those young adults who get to stay home for long period of time after school ends for them, have a hard time adjusting to attending adult services -- they have gotten comfortable at home with their routine, sleeping late, having mom or dad around. I don't know if he can start at the beginning of January but if he can be somewhere by the end of January, that would be great. This is still not over -- I'll keep you posted!!!

Chiropractic Help for Autism.

(picture from newsletter from my chiropractor) I have mentioned in the past that our family has gone to a chiropractor for years. We took our boys when they were young. When Will came to live with us (at 2 1/2 years old), he had little strength on his right side - using his arm very little and walked favoring his left side. It was our understanding that he did not learn how to walk until about the age of 1 year. 2 out of 3 foster homes had him staying either in a highchair or in a playpen whenever the social worker saw him. Anyway - I took him one day asking Dr. Gibson if he could help, which of course he said 'yes'. If my memory serves (depends on the day and how much coffee I have consumed): after examining Will and running some type of test which measured the electrical impluses off his spine, he started doing various adjustments on his back and neck. We took him about once a week and after close to 2 months, there was a change. There was more strenght, he would use his right side more, walking was more balanced. To this day, we continue to go: all 5 of us, my mom use to go and my father-in-law, 92 years old, goes. Which brings me to the article in the newsletter I received. It was from the September issue of the Annals of Vertebral Subluxation Research (I tried to get on their site but could not - think you need to subscribe and what I could read -- well, I am not a medical person and I could only read so much). It was called "Chiropractic Helps Child with Autism, Acid Reflux, Headache, Seizures, and Vomiting" and it follows a 35 month old girl on the autism spectrum. As it states her symptoms included 'headaches, epilepsy, behavioral and developmental delay, acid reflux, sleep disturbances, and vomiting'. Her history: 'she was born prematurely at 28 weeks, weighing 2 pounds, 5 ounces. Also, she was in the NICU for six weeks and came home on oxygen with apnea sleep monitors. Her primary symptom was headaches which, according to the girl's father, caused her to rub her head often as if in pain. Seven months prior to the chiropractic visit, the girl had been diagnosed with autism with the associated problems of this condition. Two months before the chiropractic care, the girl had also suffered a seizure'. So the chiropractor started her treatments and according to the authors of the article, after 10 days there was a decrease in headaches, her posture improved, behavior mellowed, and she was eating better. 24 days into treatment, she was maintaining better eye contact and not vomiting as much. 240 days after the start, she was more verbal and most of her original symptoms were disappearing. Finally the authors state that the girl's mother said her daughter was, "...off all of her medications, she’s making improvements with her occupational therapists, speech therapists, even her pre-school teachers are noticing a big difference. I'm getting my little girl back – look, she’s making eye contact with me, and even starting to say a few words! She'll use her hands to do the motions to the Itsy Bitsy Spider song!" I can't state that going to a chiroprator will solve all your problems, but I have seen first hand how it helped Will physically. Maybe it has helped him to come out of his shell too but we have always kept him with us, in public, making sure he reaches out to others. I do think it is worth talking to one!!! Here is a link to our chiropractor's office with a variety of articles relating to autism and chiropractic care.

Buying Toys for those with a Disability.

Quite by accident, I found a post on Head Start, An Office of the Administration for Children & Families Early Childhood Learning

& Knowledge Center, addressing the purchase of appropriate toys for children with disabilities. While we all think before buying, sometimes those who are not that familiar on a day-to-day basis with our kids, might think they are purchasing a worthwhile item. Hate to remind people but YES the holidays are coming (Willie reminds us everyday about Christmas and his birthday - 4 days after Christmas and brings out his 'wishlist book' probably 3" thick with lots of pictures he prints off the computer. He already has half of them in his possesion but likes to copy them).

It may be a good idea to help them choose the appropriate gift. Here are the 'Top 10 Things to Consider': 1 - Multisensory appeal: Does the toy respond with lights, sounds, or movement? Are there contrasting colors? Does it have a scent? Is there texture? 2 - Method of activation: Will the toy provide a challenge without frustration? What is the force required to activate? What are the number and difficulty of steps needed to start? 3 - Where toy will be used: Can the toy be used in a variety of positions such as side-lying or on a wheelchair tray? Will the toy be easy to store? Is there space in the home? 4 - Opportunities for success: Can play be open-ended with no definite right or wrong way? Is it adaptable to your child's individual style, ability and pace? 5 - Current popularity: Is it a toy most any child would like? Does it tie-in with other activities like T.V., movies, books, clothing, etc? 6 - Self-expression: Does the toy allow for creativity, uniqueness, and choice-making? Will it give the child experience with a variety of media? 7 - Adjustability: Does it have adjustable height, sound volume, speed, level of difficulty? 8 - Child's individual characteristics: Does the toy provide activities that reflect both developmental and chronological ages? Does it reflect the child's interests and age? 9 - Safety and durability: Consider the child's size and strength in relation to the toy's durability. Are the toy and its parts sized appropriately? Does the toy have moisture resistance? Can it be washed and cleaned? 10 - Potential for interaction: Will the child be an active participant during use? Will the toy encourage social engagement with others? While these are guidelines, we can always hope that maybe a gift that may make him or her push themselves a little bit more -- communicate more, offer more social interaction, be of interest visually. It may take awhile but sometimes they do warm up to it after watching others play. See post here. "Ball" picture from Head Start site.

Home Care Help for Those with Autism.

(picture from Best Home Care site). Normally home health care is thought about in the sense of taking care of elderly parents or someone just home from the hospital. Best Home Care offers the idea of help from a Personal Care Assistant (PCA) for help with someone with autism. Autism demonstrates itself in a variety of ways - 'a lack of empathy, problems with eye contact and communication, a delayed ability to speak, echolalia, a strong desire for routine and an obsession with a particular subject. Autistic people may also engage in “stimming,” or self-stimulating, repetitive behaviors such as hand-flapping or rocking'. As with care for other folks, a PCA will help with daily living routines making sure they take their meds, eat, bath, etc. They also are trained in dealing with tantrums and other behavioral issues. While helping the individual autistic person with his or her needs, it may be possible for the PCA to help with meals, chores or taking the person out into the community. Two great points brought to light: 'Since autistic individuals often seek out predictability and routine, being able to stay in his or her home environment may be more beneficial than moving to a new setting, such as group home. In-home care also helps the autistic person’s family, by providing more stability and helping family members avoid excessive stress or burn-out.' See post here. See information on PCAs here.

Patience Pays Off -- Watch This Cute Story Unfold!

From a post on Life News:

Ok - convince me you are not smiling right now just looking at this picture!!! Yes it is a Labrador trying to befriend a Down Syndrome little boy. Himalaya, the lab, is caught on video trying to get up close and cuddly with 3 year old, Hernan. The budding friendship takes place in Buenos Aires. Hernan's mom, in the post, says her son does not open up to people much. But Himalaya has other ideas and does not take 'no' for an answer. The video takes about 3 - 4 minutes but it is worth watching Hernan finally giving in to Himalaya giving him a hug for a few seconds. Tell me there isn't something special about a special needs child - some adults can't see it but in some cases, animals have no problem sensing their 'specialness' and can get them to open up. View post and video here.

Special Needs and Disney

Not too many things get me really upset or annoyed to the point where I will publically say something but... I am sure that you have all heard about some ruthless people abusing the wonderful accommodation that Disney allows families of special needs children. It is totally despicable to hear that those with means and others with no scruples or regard for families who need extra help have found a way to trudge and barge their way into a situation they do not belong in. They are lazy with no conscious and no concern for anyone else but themselves. For them, money is their power and means more than morals. The example that they set for their children is beyond reproach and how they can look themselves in the mirror or sleep is beyond me!! I hope that one of those families is reading this right now and can email me if they have a problem with what I am saying and my disgust for them. When our kids were young, we took them to Disney World several times. At the time Disney did not offer anything like that -- we did ask. So we stood in line like everyone else and WAITED and WAITED and WAITED the best we could. At times, one of us would

leave the line with one of the kids to give them space move around or let loose some steam. FYI - our oldest was still on oxygen and Will being autistic, could not understand the standing around. I do have to say that the majority of families were very nice and understanding of our situation and would let us come and go as needed. When Disney announced this service for families, I thought it was great. The last time we were there, our kids were older so we took advantage of Fastpass, which was great. Why these families can't use this is beyond me. So there is some planning involved, maybe some inconvenience if you want to get on certain rides before others - get over yourselves. From Disability Scoop, my understanding is that Disney's new rule is a version of Fastpass: Instead of giving visitors with disabilities and their family members a card that allows them to go directly onto rides, the guests will be given a scheduled time period to return to get faster access to the attraction. In essence, guests with disabilities and their families will get to use a new version of the Fastpass tickets offered for certain rides to all guests. It is called the Disabled Assistance System and will start October 9. The change is explained in more depth here Picture from Disney website.

Induced Labor & Autism Linked.

This is from an online newsletter from my chiropractor, Dr. Gibson. Our family has been going to him (starting with his predecessor) for a long time. We started taking the kids when they were small, my in-laws go, my mom went. I saw this article and thought it might be something to share.

Medpage Today on August 12, 2013 published an article from the results of a study from JAMA Pediatrics showing this link. Charles Bankhead of Medway says "The odds of autism increased significantly in children whose mothers gave birth with induced or augmented labor, a study of more than 600,000 births showed." The study was done over an 8 year period and looked at 625,000 babies. They were then matched with their school records and autism diagnosis. Time Magazine's online Family & Health section, August 13, 2013 states "For children who were born after induced labor, the risk of autism was 13% higher compared with that of children born to mothers who were not induced; speeding up labor was associated with a 16% higher risk of autism, while both induction and augmentation were linked to a 23% greater risk of autism in children." In the study results, the authors report "Compared with children born to mothers who received neither labor induction nor augmentation, children born to mothers who were induced and augmented, induced only, or augmented only experienced increased odds of autism after controlling for potential confounders related to socioeconomic status, maternal health, pregnancy-related events and conditions, and birth year." They concluded, "Our work suggests that induction/augmentation during childbirth is associated with increased odds of autism diagnosis in childhood." This is something you may want to check for yourself. Medpage Today Time Magazine online Easton Chiropratic Picture from Easton Pond Chiropractic site.

Ming Tsai - A Great & Gracious Man

After writing the story about Milo and Michael, it reminded me of the time I decided to try to have Will meet Ming Tsai. Will loves watching cooking shows - 'Lidia's Italian Kitchen', 'Nick Stellino', 'Simply Ming'. Will was watching one show and getting the biggest charge out of Ming and his mom, who sometimes appears on the show. So since they are somewhat close, I decided to try and see about going up there. His restaurant is 'The Blue Ginger'. I emailed the restaurant and was surprised to hear back within 48 hours from his assistant. She said it would be great to have Will come up. So we started going back and forth a few times and finally came up with a date. You would have thought Will was the celebrity that night. When we got there, they called him by name and took us to our table. A couple of the hostesses came over and talked to us for awhile. Ming was there but was busy with other people but after about 10 minutes, came over to us. At first Will didn't seem to care or didn't recognize him, we're not sure. Ming saw one of his cookbooks nearby, got it and put it up near his own face -- Will's eyes lit up and a big smile!!! We talked more and I told Ming Will likes to collect cookbooks so Ming autographed that one and gave it to him.

We ate (great food by the way) and more people stopped at our table, including Ming's assistant. When it came time to get ready to leave, Will needed to use the restroom. He sometimes needs help with his personal hygiene, so I asked for a one room bathroom. The main hostess walked Will arm-in-arm, went by the kitchen so he could see inside (the personnel wear baseball caps with the restaurant's name on it and she gave him one), and we went to take care of business.

When done, we wandered to the front. I wanted to say 'bye' and 'thank you' to Ming but saw he was busy; so I told the hostess to relay my message to him. While getting ready to go, Ming came up to us and asked if we brought a camera (which I did but thought he was too busy). I said so to him and he said 'never too busy' and let me take a picture. If you are ever in the area of 'The Blue Ginger', please stop by for a great meal and maybe even to spend time with a great guy.

An Act of Kindness.

According to disability scoop, when Riley, 8, was out with his family eating and was getting a little rowdy, mom knew people were getting a little annoyed. Apparently Riley, who is non-verbal, has been acting up on public outings lately. It so happened that the waitress then came over to tell the family that another family had paid their dinner bill and left them at note: “God only gives special children to special people,” read the message. As mom put it, “To have someone do that small act towards us shows that some people absolutely understand what we are going through and how hard it is to face the public sometimes. Little did he know what struggles we had been facing lately and this was surely needed at that moment.”

Hit the Water with Surfers Healing

I was reading the Sunday paper and found a small write-up on an event at one of our beaches -- a surfing camp held by Surfers Healing.

(picture from Surfers Healing Wikipedia of founder Israel 'Izzy' Paskowitz) According to Wikipedia, Surfers Healing was founded by Israel & Danielle Paskowitz for their son Isiah, who was diagnosed with autism at age 3. Israel was a competitive surfer and owns Paskowitz Surf Camp. The post says the ocean was the one place that Izzy seemed to find respite. The organization teaches autistic children to surf.

(picture from Surfers Healing site in Wikipedia - surfing in RI) "Surfers Healing seeks to enrich the lives of people living with Autism by exposing them to the unique experience of surfing." The camps are FREE to autistic children and have been held in the following states: Hawaii, North Carolina, New Jersey, New York, Rhode Island; also in Puerto Rico. In August 2012, they expanded to Toronto Canada organized by Aloha Toronto, which is an annual weekend beach festival inspired by Surfers Healing. 2014 will find Surfers Healing taking their camps to Nova Scotia & British Colombia.

Transitioning: Visiting Adult Service Providers.

The past few weeks, I have been calling local adult service providers to see which ones may be taking new clients in the next few months. As it stands, our state government is revamping the work system with these agencies. Some are allowing people to visit and others are not. So Will & I started our visits and saw 4 places. One agency let us come in to talk and get a tour but thought they were not taking names for a few months (Will does not leave school till December anyway). The other 3 were open to new clients. Note -- when you start this process, take your son or daughter with you. It is good to see their reactions, watch them to see if they are interested in anything, if they take note of any activity they see. Let the staff & current clients there interact with them. Ask your questions (see previous post regarding questions for service providers). Your questions should be answered and nothing should be rushed. You should even have time to sit and talk to the person in charge of intake. If the person is real good, they will even provide you with information you have not even thought of yet. They may know about other programs in other agencies and how they are the same or different - if not ask!! Make sure people ask about your young adult and what he or she has strengths in or weaknesses, what do YOU want your child to get out of the program. Ask if he or she can spend a trial day there. If at all possible, have your letter from the state which shows the level of service components that your son or daughter will be getting - based on the SIS eval that was done. Back to the visits -- we had 3 great ones, learning lots about each from some very nice people. Though Will was more interested in getting home, I did find him peeking at a few things in each place - wandering away to look. Anyway, when we got home, I typed out the 3 places we saw on his iPad. Our visits took place on different days, so when I read the names to him I mentioned something different about each place (NOTHING to do with activities or person we spoke to). One - the place we went to with your brother; two - the place that had 2 buildings; three - the place we went to today. I asked him if he liked any of these places -- yes. Point to one you like - he did; do you like another - yes. Point - he pointed to a second one. Then I did it again the next day, writing the names in different order. Same result. In actuality, these were the places I liked as well and thought would be a good fit. I had not mentioned anything to Will about these either. I also spoke with his teacher to see if she had any thoughts on these and she was in agreement with me about why I chose the 2 I did. Why? I liked the social activities at one because they had similar ones to school and a wonderful 'chill out' room when people get overwhelmed or frustrated (I want a room like this in my house). The other agency had a work program also similar to school that will be expanded on into the community - so I thought it would be a good transition for him. His teacher is the one who told me you can split services between 2 places!! So now we TRY to get into one for social activities and one for work. BUT ARE WE DONE?? NO!! GUESS - MORE PAPERWORK!!! So now the next phase... I will keep you posted.

Walk in My Shoes

I received a notification from the Google+ community of 'Special Needs Clothing' (which shows some nice things) showing a pair of shorts with an elastic band top. Of course, Will has been wearing this type of shorts and pants FOREVER since it is the easiest thing for him to put on and get off (his finger dexterity is not good for buttons and zippers). In fact, this type of pant almost caused a fury in his old junior high school years ago -- apparently there were incidents of kids being 'pants'. So the school was outlawing elasticized pants and shorts. My letter to the principal wanted to notify him that for Will, or anyone in our group who can't handle anything else but this type of clothing, it would be more of an incident to have an aide spotted in the bathroom with hands on the child's zipper; though knowing the staff, it would be innocent as they would be helping the child with their clothing using the toilet. BUT how would it look??!! Anyway our group was left out of this ruling. OPPS!! Sorry for wandering off my initial conversation!! The best shoes that Will has worn have been a couple of styles

that I have purchased at Walmart (I am not advertising the store, just stating where I was able to purchase them). They carry 2 very similar styles -- one by Dr. Scholl's and

one by Starter. The Starter brand is lightweight, more of a canvas material while the Dr. Scholl's is leather. They both are velcro closures. The soles are about the same width. Under normal wear and tear, for Will, the Dr. Scholl's wears better -- it is a little better fit for him and so holds his foot better; the Starter will tend to soften and open up/loosen on his feet. There is not much of a price difference. Here are the shoes that Will normally wears (he is such a fashionista!! Sometimes he gets crazy and wears gray!!):

I feel shoes that just slip on for Will are not the best, since he tends to shuffle when he walks and I am afraid he will step out of the shoes. For those who might want more of a fashion statement, I had come across some very neat shoe laces for people with disabilities, including older folks who may have problems with arthritis.

These are called 'Lock Laces'. They are elastic, bungee laces, no tie. Previous post called 'Helpful Shoe Laces' gave reasons why it might be a help for those with medical issues.

A Miss Amazing Pageant Where Everyone is a Winner.

I was watching the Today Show, when I thought I might head out the door to run an errand. I left the TV on while I got my keys and wallet -- so glad I did!!. I was able to watch a video and listen to this story (through a few tears I must admit). Jordan Somer, a young lady from Nebraska, started this pageant when she was 13 years old for young ladies in the area who have disabilities. "It isn’t about who has the best voice or the prettiest dress.

It is, however, still about the tiara. Every girl at the Miss Amazing pageant receives a crown because every girl to an extent in her own way is Miss Amazing, just by participating in the event and really pushing her limits,” said Jordan Somer, the founder of the Miss Amazing pageant, which is just for girls with physical and mental disabilities. The future Miss Amazing's have a variety of physical &/or mental disability issues - some severe, some non-verbal, some high-functioning. The contestants have an introduction ceremony, participate in evening wear, & a talent show. All designed to build confidence & self-esteem. One participant's mother said “To see how much happiness it brings her, to see her meeting all these new friends, just to see that smile on her face, it just melts my heart.” Another comment from contestant Abby Wiegand, “I like it because it puts myself out there and I'm not just this girl in the wheelchair. I'm me.” It is Jordan's hope that all these young ladies will go back to their everyday life with the memory of being totally accepted. The pageant has been going on for 7 years and according to the article, there are many others across the country. To read the article and watch the video, click here.

A Story You Won't Forget.

(picture from LifeNews website) Going through my Google+ community, I came across this incredible story. I believe that all parents tell their children 'it is what is inside a person that matters, looks aren't everything'. At least I hope all parents do... Being parents of special needs children, we do find ourselves explaining looks, sounds, mannerisms, the way our children speak, etc., to other people. I also have found, most people are fine with it, sometimes even explaining that a member of their own family has a certain diagnosis so they are use to the aforementioned. Those who are not fine with it...say a prayer. The story is one that illustrates the hope we all have about seeing beyond the outside. This is a dedicated family taking on a child in need, saving him from a miserable life - saving him from death from his own society. Meet Adam and his family, the Paulrajs.

A Video to Make You Think.

I was forwarded this video and hope you take the time to watch it. It is so inspiring. Many blessings to him and his parents who just raised him to be just like all the other kids. Ritchie Parker.

For All of Us Out There!!!

Each and everyone of us can say "been there, done that".

The Earbud / Headphone Dilema

This is Will.

This is Will with earbuds. This is what all earbuds look like after a short time being used by Will. This is a rope style that I found in a major retailer and was told it might be better than others since it is a tougher material.

This is a before and after version of the regular earbuds he uses. We go through at least a pair a month!!

We happen to be speaking to another family with an autistic child and they said they had the same problem. The major issue that comes up is the cord. They found headsets with removable cords.

These we found in a national electronic store and the sales person told us that they have heard of the same issue with special needs children. The cords get tangled and it messes up the inside wiring. This removable cord headphone set has only one 'cord' so the tangling problem is somewhat diminished and it can be replaced easily. The sales associate said it also fits the iPhone, iPod, iPad, and especially the transistor radio he loves so much. If your child is having the same problem, check out this headset with your local store. The sound is good, we found his on sale, the ear part collapses, and there is good padding on the ear and headband. I am not here to advertise brand names or retail companies but if you want the names of the items you see here, just email me.

A Video About a Day in the Life of a Special Needs Teacher.

Thank a Special Needs teacher when you see one. I was looking around for videos and came across this one which follows a high school Special Needs teacher in Maryland. Watching this reminds me of Will's teachers and what they do when it comes to academics and community outreach. Will's group goes out every semester to work one day a week in a local business as well as going on trips to the library, going shopping for supplies for their store in their classroom, field trips to interesting events, etc. Their store sells drinks and snacks, so they inventory their goods before shopping. They come back and price and stock the goods. The kids have to interact with the teachers that come in to buy - hand things to them, use the register and make change if needed. Recycling, delivering the newspapers to teachers, and help with copies is what they are responsible for as well. This You Tube video is great and should make all of us give those special ed teachers in our life, or someone you know, a great big pat on the back and 'thank you'.

Reading With the Kids -- Remembering When...

At a recent yard sale, I was talking to some folks who mentioned that it is hard for them to get their kids to read. Mine too -- you get summer reading out of them and, of course, whatever they have to read during the school year. But to do it on their own..... Good Luck!! We use to read every night when they were little, I'd have all 3 sitting around me, reading 3 or 4 books at a sitting. We would go to the library and they could each pick out a couple of books to read. Now they are older and read?? Yea right! My husband and I read as much as we can. Will, my autistic son, uses an iPad for communication. I downloaded 'Overdrive' and am reading in front of them trying to get them to read with electronics. 'That's nice' I hear. I am wandering off the path I want to go on. What I started telling folks (from the yard sale) is what I use to do with them when they were tired of the books. Keep the imagination going. Two boys being verbal and one not, what we did was make up our own stories. One of us would start (it was usually a spooky story - they still are boys). That person would take the story to a certain point and then point to another person and the story would continue. So what about Will you're probably thinking. He was our sound effects guy!! Someone would have a character look out a window, go down or up stairs, open a door -- whatever; "and then.....????". Will would make a sound and another person would take over building on that sound. They really had a good time and Will did have a repertoire of sounds to contribute!! Sometimes he would make a sound that didn't seem to fit so the next person could get creative, pretending it's a dream or listening to a radio. They really got into it. See if your kids might want to try it too!!

Just some photos to hopefully make you smile!!

NO EXPLANATIONS NEEDED! HAVE A GREAT WEEKEND!!