End of Year Financial Reporting.

I am not a legal or financial accredited person. I can only speak from personal situations. Please contact a local professional who specializes in these matters to help answer questions.

Well it is the start of a new year and the old year has to be accounted for. As guardians for Willie, we are responsible for his finances. I brought out all his paperwork which ranged from receipts to bank statements to pay stubs. The past few years I had been pretty well organized but quickly found out that this year, I am not so lucky. While I have been, literally, stuffing all this paper into an envelope (so everything is in one place - good!) I have not been balancing it all out, copying off his monthly statements. He had primarily a savings account; then I decided to open a checking account since with a ATM/debit/charge card attached to it, it would be easier to keep track of things. So when his SSI money started being deposited into the checking account, I closed the savings account with all intentions of making copies of his statements BEFORE the bank stopped putting them online. You can guess what happened -- I did not do that so now I am missing some transactions and have to go to the bank and have them help me out. Lucky them!!

So I write this with hopes of reaching someone reading this -- be more organized. Every month balance out the account, while it is good to have all receipts in one location, at least have them organized by month, have receipts written out for any money taken out for things like sitters (not respite), trips to the barber shop. I use a receipt book like you would use for rent receipts. Will likes to buy snacks at his day program so I send in money and they send a receipt.

Now to lay it all out, match it all up. Soon I will receive forms through the mail for Probate Court so I need all the information ready to go showing how his money was received and spent. Last year, mid-year, I received forms from Social Security

asking me to account for his spending so I need this information again because they will do the same. You can probably assume that one of my New Years resolutions is to be more organized, at least with Will's things, so I will try. My plans are to put all papers and receipts in an accordion folder, divided by month to make life easier.

While all this is good for guardianship for a special needs adult child, the same principles can hold for taking care of an elderly parent. They may need to get better organized as well, for YOUR sake, if you need to step in and take over or find a bill that needs to be paid while they may be just in the hospital or rehab for a period of time. As time goes on, you may need to step in as guardian or get Power of Attorney to handle matters. Start the talk with your parents, get information from a local professional. Be prepared!

Other resources you may want to check out for additional views: Friendship Circle, Families.com, Disabled World, Special Needs Alliance, Special Needs.com.

Special needs or special talents to be discovered.

I have not been able to write much lately due to family issues but found I had to share stories I have been coming across. We hear and see stories about special needs children and young adults and challenges they face daily. Yes, it is true; they have a lot to overcome. Yet there surfaces stories about those who do overcome. They are happy in what they do and become very adept at their talents. Here are their stories.

From LifeNews: "Kyle Maynard is a motivational speaker, author, entrepreneur and athlete. Despite being born with arms that end at the elbows and legs near the knees, Kyle’s wrestled for one of the best teams in the Southeast, set records in weightlifting, fought in mixed martial arts, and most recently became the first man to crawl on his own to the summit of Mt. Kilimanjaro, the highest mountain in Africa." Born with a condition known as congenital amputation, his parents set out to have him live a life a normal life. Kyle lives on his own, can type and eat without aids, drive with little adaptations. He was 'GNCs World's Strongest Teen', was ESPY Award Winner (Best Athlete with a Disability), was inducted in the National Wrestling Hall of Fame; is a certified instructor of CrossFit - working with wounded soldiers adapting their fitness regime to their needs. Best of luck!

Here is Ben Jackson, born with cerebral palsy but has decided he would rather wrestle. He is working on competing on the international level. Keep up the good work!

Zachery Mackenzie was born with hypo plastic left heart syndrome which means that the left side of the heart is critically underdeveloped. Doctors told his mom that should he be born live, he probably would not live a few days. Now he turns 19 and just graduated high school. Surgery and prayers got the family through the hard times when he was growing up. Where you headed now?

Congratulations to Natalia, Natty, Goleniowska for winning a spot in the back-to-school ad for a store in the United Kingdom, Salinsbury. What's really the big deal? Natty has Downs Syndrome. As the Downs Syndrome Association states - Downs Syndrome children are a part of everyday life and therefore should be included in advertising and that Natty was a delight to work with. Way to go!

Chris Koch is a dedicated farmer at Apricot Lane Farms in California doing just about anything that other workers are doing, including driving a tractor. Please watch his amazing video. I hope to learn from his undying tenacity.

A mom's ingenuity!

(pictures from Daily Mail/Mail Online) From the mind of a mom whose son has cerebral palsy - a walking harness, an 'Upsee'. Debby Elnatan's idea was put into production by a company in Northern Ireland, Leckey. This support harness, as you can see by the picture, has the child attached to an adult and so he/she can 'walk' with them. Today was the global launching of the 'Firefly Upsee'.

The harness attaches to the adult's waist and the child's legs move in step with them to get training to walk. Hands stay free. From Claire Canale, Firefly's clinical research manager and occupational therapist: "Short-term, the Upsee improves special needs family participation and quality of life, while research suggests it has the potential to help with physical and emotional development in the longer term. It has been humbling to see the progress and happiness the Upsee is creating; watching children to do simple things for the first time such as kicking a ball or playing with a sibling is wonderful for everyone involved, but especially the families.' You can check out the Firefly website here. This company and Leckey offer items for disabled and special needs children. Leckey covers mobility, bathing & toileting, sleeping, early intervention, etc.

Theater Performances Geared to Autistic Audiences.

(picture from TDF website)
I was talking to a friend the other day who has been working with a special needs child in a local school. She has grown close to the family over the years and was telling me that she, mom, and the child are heading to New York City to see a performance of 'Wicked' next month, peformed specifically for an autistic audience. I had never heard of this so I did a little research. There is a group called 'TDF - Theater Development Fund' which, as the site for 'Americans for the Arts' states: "The Theatre Development Fund puts on special screenings of Broadway shows four times a year, working with everyone on set to ensure the show is true to the original but with modifications that make the audience more comfortable. Tickets for these evening performances are only available to families with autistic children or adults, not the general public. They have 30 extra helpers in the audience on hand, they hand out multi-colored stress relievers to help relax the audience before and during the show, and have designated rooms right outside the theatre for audience members to go if they need to get up and play with blocks or clay, or just be in a completely quiet room for awhile. Audio levels are reduced by about 20%, and strobe lights are completely eliminated from the show."

A 'Soap Box Story' that I wrote earlier on, told a story about a local child with disabilities and her mom attending a theater performance; they were asked to leave because the people around her did not appreciate the way she showed her 'happiness' by clapping and squealing. I know the times we took Will to the theater or even a movie, meant making 8 - 10 treks to the bathroom because he did not care to be there. As he got older, all he did was fall asleep. These specific shows are, as 'The Guardian' says: ".... a "relaxed performance", which means the theatre turns a blind eye to – indeed actively encourages – potentially disruptive behaviour. It allows children to move around and provides a less frightening environment. Actors, front of house, back-stage crew and box-office staff are prepared for what to expect during the performance, and "visual stories" – simplified information about the play and the theatre – are emailed to parents beforehand."

I did find through a simple search for 'theater for autistic audience', a variety of shows in different locations. So it is nice to see companies out there sensitive to families and showing an interest in their participation. "The aim is to cater for the full spectrum of autistic behaviour, from profound disability to anxiety," says Kirsty Hoyle, project manager of the relaxed performances project run by the Society of London Theatre and The Prince's Foundation for Children & the Arts. This means anything from children groaning and rocking in their wheelchairs to reacting to the action on stage in an endearingly pantomimic way – "Watch out!" During one show, a child repeatedly shouted "Mango!"

Sleep Safe Beds for Special Needs Children.

(picture from You Tube) I found a great video on this bed and it was very informative. Mom describes the bed wonderfully and why it works for her son and why it makes her feel comfortable. If anyone has a situation where you feel your special needs or disabled child is not completey safe in their current type bed, you may want to take a peek at this. It is a "Sleep Safe Bed" and they offer a several styles and sizes. As they say, the cost of the bed may be too much for some, they do offer information on how to try and see if your medical insurance my help cover the cost. According to the website, the company gives a bed away each quarter!!! You can register here. Click here for insurance help.

As the website states:
The SleepSafe® Beds are not only visually appealing, they also address safety issues in ways no other more traditional institutional equipment can match: • The clear 3/16″ windows incorporated in the safety rails provide visibility and affords the opportunity to observe the environment in situations where the need to see and be seen are important. • Entrapment issues are addressed with the patented SleepSafe® Bed design. The space between the side rails, head and foot boards and the mattress is nearly nonexistent – even with mattress compression. • In addition to addressing the problem of entrapment found in traditional hospital equipment, our beds’ aesthetics and durable construction promote an inviting atmosphere for the benefit of not only the resident, where self-esteem may be an issue, but also for family members and caregivers who appreciate a more normalized setting.

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.

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.

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”.

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.

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.

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 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 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'.

A Story of Love and Perseverance.

I read a great story that made me want to cry and almost made me ashamed of myself when I say I cannot do something. It was called 'Winning the Race' and it was in the latest issue from Sams Club, July/August 2013 Healthy Living. I found the Team Hoyt website which you should take a look at for a variety of reasons. For me it was a kick in the butt, just do what I need to do and not complain; it is inspirational; it is love. When Rick was born in 1962, his umbilical cord was wrapped around his neck, doctors said he would be a quadriplegic with cerebral palsy. While the times then said to put him in an institution, his parents decided to raise him as they would any other child. There were struggles to get him into school but a group of engineers at Tufts University helped to build him a communication device after someone there made a joke and Rick started laughing. This interactive device allowed Rick to tap out letters - his first 'words' were 'Go Bruins'.

When Rick was 15 he told his dad, Dick, that he wanted to take part in a 5 mile run for a lacrosse player that was paralyzed from a accident. Dick then pushed his son's wheelchair through the race and finished next to last. As the story goes, at the end Rick typed out "Dad, when I am running, it feels like I'm not handicapped". Their next 10K race saw a change in the wheelchair - a lighter one with other modifications. They finished ahead of half of the 300 runners. According to Dick, Rick 'just loved to be in the middle of the runners - always had a big smile on his face with his hands up in the air'. While many applauded the team, others (those who had disabled family members) criticized them stating that Dad was looking for glory for himself. Yet, they kept going -- on to the Boston Marathon. There now is a bronze statue of them, they are the face of the Boston Marathon.

Team Hoyt has completed more than 1,000 distance races and triathlons, including 6 Ironman competitions. In 1992, they ran & biked across America in 45 days covering 3,735 miles. In 1989, The Hoyt Foundation was started to help America's disabled youth integrate into society and compete in endurance events; it has 20 chapters around the world. Oh, by the way -- Rick graduated from Boston University in 1993; it may have taken him 9 years to earn his degree in special education but he did it. As Dick said, "Our message became 'Yes You Can!' That has always been our motto with Rick. There isn't anything you can't do as long as you make up your mind to do it." (pictures from Team Hoyt website)