Our story

Our experiences and services used for our special needs young adult son. Also a sister blog to our caregiving & caring for elderly parents.

Saturday, August 30, 2014

A new term for me with Will.

Will came home from his adult day program with a note on his iPad about a 'not-so-good-day' that he had -- apparently he was frustrated a lot and they saw a few incidents of 'Self Injurious Behavior' or 'SIB'. Now knowing Will is not violent or has ever exhibited any issues of what I thought was SIB, like head banging or biting, I got worried. Yes sometimes he balls his hand into a fist and will hit his headphones or chin lightly, or will dance and jump around and slap his thigh, I never realized this was SIB. Granted it was not a behavior I liked or endorsed and we were trying to stop it. So I decided to take a look into it and read about it. I have not found anything yet that specifically targets adults, just children but I guess most of what they write can be used for adults with autism. An ezine article, 'Treating Autism Symptoms in Your Child', by Craig Kendall tells of several reasons why your child might do this. One is that they might be overwhelmed or overstimulated and need to focus on something internal or external and pain does that. Second is that the child might need more tactile feedback. Third, if the child hits ears, it may be a sign of an ear infection. Lastly Craig states that it may be related to a specific type of seizure so contact your physician. He also states that when a child is non-verbal, there is a frustration of not being able to communicate. So besides the obvious of finding a communication method, we should also work on teaching the child ways to lessen the frustration like through diet, relaxation techniques, exercise, or deep pressure. We try to get Will to type out what he feels though this is hard for him to do. Of course, you can keep a record of what is happening that triggers this SIB that will help to stop it before it happens. In Will's case, he does it when he is happy or sad, when he listens to his music or on the computer or just sitting quiet. Of course, seek medical help if you are not sure what to do or talk to your child's teachers or therapists. Another article by Gary Heffner, "Introduction to Self Injurious Behavior" from Autism Help, states: 'It would make sense that the seriousness of the self-injury should direct the choice of treatment. A child's whose life is in danger should receive the most aggressive treatment. The choice of treatment needs to be up to the parent, of course. In some countries or states, there may be laws that limit the type of treatment a child may receive, however. These laws may require treating self-injurious behavior with positive behavioral programs and outlaw the use of aversives, even when the self-injury is life-threatening. Read how one parent described this approach: "Currently, there are 100's of autistic people being tortured by ineffective, tedious and ridiculous "positive behavioral programs" - Worse, even when these autistic people have repeatedly failed to respond to these conventional methods, several state laws have prohibited the use of mild aversive therapy, which - ironically is one of the most safe, effective and humane therapies used to protect a compulsive self-injurious autistic person-who has otherwise NOT responded to a plethora of conventional interventions. It's a crime to allow a person to continue injuring themselves...and the worst is the on-going practice of behavioral psychologists taking data - yes data - counting the number of times the autistic person smashes their skull with their fists, or rips their hair out... it's called a "functional analysis" - and this practice should be illegal. I never want any family or child to suffer the unbelievable hell we experienced dealing with uncontrollable self-injurious behavior. Families should know what the alternatives are to help their child. Skin-stimulus therapy is very effective in that small population of self-injurious children, who have otherwise NOT responded to other therapies. Many people do not realize that it's extremely complex to treat a profoundly-autistic or profoundly-disabled person's self-injurious behaviors - as they have limited cognitive abilities; hence don't respond favorably to ignoring, re-direction or pharmaceutical interventions. The skin-shock works best for compulsive self-abuse, as it acts like a nudge on a record player that keeps playing. It's like it "startles' the otherwise very distant autistic child into reality. It actually teaches them self-control. Some of these types of autistic children are on a very primitive level - and it's hard for others to accept that they simply don't respond to conventional therapies." (An anonymous parent). Try the non-aversive procedures first, but for those children whose seriously self-injurious behavior has not responded to these procedures, it may pay to look at aversive strategies as well.'

Sunday, July 27, 2014

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.

Wednesday, April 9, 2014

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.

Wednesday, March 19, 2014

Almost the 2 week period after starting adult services.

Well, it has been an interesting 2 weeks. Willie has seemed to settle in relatively well with the facility. It took some time for him to get used to the new location -- new faces, new noises, new schedule. They let him get comfortable by letting him stay on the computer for a while each day (which he loved). Then they decided it was time for him to get to work. He gave them some grief, but after I suggested they put his schedule on his iPad, he would be fine (it might take a couple of days) but it would work. I had alredy set up a general schedule they just broke it down accordingly. He has seemed to settle in well with that. They also had an issue with him when it came time to leave. He would see others leaving and he was still waiting and would cry. We put a time in his schedule when he had to 'wait for a ride'. That seemed to pacify him.
The biggest problem we have had has been with transportation. He was approved for RIde and all along we have been pointing out their vans/small buses as his future transportation mode. Well, what I did not realize was that if there was no available van/bus, he would be going in a taxi!! I rode with him the first day (which was my plan all along) - in a taxi. He seemed Ok, said he wanted to go by himself. Then I tried him alone -- some days good, some days not so good. He was getting upset, crying, tried to open the taxi door at one point, while it was in motion. Got a call from the company -- now we have a safety issue so he has been temporarily suspended from the program. So the case manager and I are putting our heads together to find a solution - right now I drop him off and pick him up everyday. Don't get me wrong - I don't mind it but we are trying to give our young adults independence and teach them how to get around and how to deal with people outside the family. We will not always be here. But the trip is about 80 miles a day (round trip 2 times a day). Yes Will and I picked the facility!!! We tried a more local facility but they were not taking names at the time. This place is wonderful with a great reputation. The people are great and have been very patient and understanding. I can call at any time to talk to someone.
Anyway - one travel solution was for a family friend to take Will a couple times a week (we would pay for his/her time); the other is to meet up with the facility's own van they use to pick up more local clients, maybe at a halfway point. This way he can ride with his peers in a vehicle he is more familiar with. So now we wait to see which way to go. We are too far for their own van to come and get him. Then we can work Will into a RIde vehicle after he has settled in more, if we need to. Anyone out there with suggestions??

Saturday, March 8, 2014

Musical success for a boy without arms.

(picture from LifeNews)
Meet Jamir Wallace from New Jersey. Born without arms, he watched his sister play the piano and decided he needed to choose an instrument to learn. He picked the trumpet and has never stopped playing. His family and music teacher encouraged him and found someone who was able to make a special stand for his trumpet, which he plays with his feet. Jamir's classmates, teachers, and of course family all push his strengths and what he can do, especially playing in the Green Street Elementary School Band. The story might seem familiar - remember Tony Melendez, who plays the guitar with his feet. Just to add, Jamir is also learning to play the guitar and was able to spend his 8th birthday with Tony at a concert in East Brunswick, NJ. Jamir is being mentored by a local high school senior, Dan Servantes, who will be attending Berklee College of Music and says Jamir has a gift for music. The can-do attitude will get him far in life, as they don't look at themselves as being disabled, as we should not. To watch his video, click here.

Sunday, March 2, 2014

The Weekday Mixer is here! It is a brand new social media link-up for all to join! This mixer is all about networking and making connections. Also, you can gain exposure and increase your social media following! Link up your social media accounts and mix it up with some of the other linkers. I'm sure you'll make some great friends!

I hope my experience with this app will help others, either looking to make social stories or do what I needed to do.

I had been wanting to make some type of book that would make it easy for Will to 'participate' in responses and prayers at church instead of just making his sounds (which no one cares about anyway - they know him). At one point, I started to put together a book of signs and their meanings but it was hard to hold the book and do the sign (I was doing it with him and we needed all 4 of our hands). So I went on looking. His iPad has a 'notes' section - I tried that by typing in the responses since it would verbalize them. But when it came to long responses and prayers,    the areas being used would not open up so he could read along. So I turned to our local TechAccess office and Matt, a trusted advisor who has know Will since elementary school. We spent some time discussing what I wanted and he came up with 'Pictello'.
You can make up a story using your own words and pictures. I wrote the responses/prayers in the 'notes' and would take a picture of it (you can make so it fits in the picture area), and that I what I used so Will could read what the iPad verbalized. You can start your book with
pictures, decide if you want the story to unfold as a slide show or 'turn the page' yourself.
You can manage the speed, volumne, and the type of voice you want. I will say that it was fairly easy to learn to do; this 'tech stuff' is not something I pick up like a pro. "Pictello" is free and on the iTunes app store.
There are other storybook/storytelling apps also in the app store (some free, some not): My StoryStory CreatorLego Friends Story MakerbookPress - Best Book Creator to name a few. I would suggest reading the reviews and talking to someone who is familiar with these apps -- someone who works with apps, a Speech & Language Therapist, other parents. There are quite a few out there so I am sure one will fit the bill or come very close to what you are looking for. Good luck!!

Weekday Mixer
 Each week, the Weekday Mixer will start on Sunday nights at 8:00pm and go on until Friday night at 11:59pm. One linker will be chosen each week and featured in the following week's link-up! If chosen, you can provide a brief summary about yourself and your blog/website and all of your social media accounts will be listed. It's a great way to stand out among the crowd!

Now it's time to meet your host and guest hosts!

Interested in co-hosting the Weekday Mixer?
Fill out this form and Natasha will be in touch with more information.

Now, let's get started...

Please feel free to share our blog button on your sidebar.
Epic Mommy Adventures
<div align="center"><a href="http://epicmommyadventures.com" title="Epic Mommy Adventures" target="_blank"><img src="http://i1248.photobucket.com/albums/hh493/cruzanchica/WeekdayMixer2200px_zps2f25b12e.png" alt="Epic Mommy Adventures" style="border:none;" /></a></div>

Tuesday, February 25, 2014

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!"

Thursday, February 13, 2014

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.

Wednesday, February 5, 2014

Snoezelen: Promoting Deep Relaxation. Holland Bloorview's Program Looks Great.

"To sniff out" and "doze", Snoezelen, is a program at Holland Bloorview to help promote deep relaxation. In the current magazine, Bloom Winter 2014 and their website, the sensory room is described to help those children with special needs relax. As the site descibes it, 'Snoezelen rooms are artificially engineered spaces that use music, lighting, gentle vibrations, tactile sensations and aromatherapy. Users can relax and choose activities at their own pace. The room can be relaxing or stimulating depending on one’s sensory needs. It can encourage social skills and heighten sensory awareness.'
Their magazine also gives a 'recipe' for making your own sensory corner or room at home.

1 - choose a low traffic spot that is quiet with few visual distractions. You can use dividers if you don't have a readily available spot. It needs to be dark to maximize the effects of the lights.

2 - string Christmas lights around the room or corner, or you can use light projecting bubble lamps black fluorescent lights, bendable tubes.

3 - use colored light bulbs to create a unique effect. Use a flashlight pointed at a piece of crumpled cooking foil to break up light beams. You can place tissue paper over the flashlight to create different colors.

4 - the floor can be covered with exercise mats, comfortable and soft carpet, pillows, bean bags or mattresses. You can even make them vibrate. Also have a small table to hold sensory items.

5 - paint stars on the ceiling with fluorescent paint, or use a sheet across the ceiling.

6 - you can hang wind chimes or rain sticks or colorful mobiles.

7 - use aromatherapy fans or plug-ins. Try scented hand lotion or oils if want to do a massage. For taste: flavored drinks or foods.

8 - play relaxing music (dolphin, rainforest, classical). There are sound therapy machines that creates waterfall, rain or canoeing sounds.

9 - use a bubble tube or aquarium.

10 - use small 'cause & effect' toys like things that light up, vibrate, make noise, or have a tactile feel; also sensory items like koosh balls and balloons filled with rice.
Sounds like a great room for anyone to relax in.

Saturday, February 1, 2014

Grant money will allow local police to provide tracking devices for autistic children who wander.

I found a post on Disabilityscoop.com that states there will be grant money available to police to purchase tracking devices and give them to families who have individuals with developmental disabilities who wander. The plan is similar to one that offers devices to those with Alzheimer's. Sen Schumer of NY is introducing the legislation. Another one of their posts states that autistic children are 4 times more likely to wander than their 'typically developing siblings'. 'Researchers found that 49 percent of children with autism ran off at least once after age 4. About half of those who bolted were gone long enough to be considered “missing.” In the vast majority of cases, kids left their home or someone else’s and had a specific destination or activity in mind. But the reasons for wandering varied, with kids diagnosed with Asperger’s syndrome more likely to be feeling anxious while those with an autism label were often described as happy, playful or exhilarated when they bolted, researchers found.' Tracking devices can either be worn or sewn into clothing. When someone goes missing, the family can contact the monitoring company for help in locating the person. These are just a couple of style I found when doing a search for 'tracking devices for autistic children'.

Thursday, January 30, 2014

Update on our adult service programs: Slow but sure....

(Will hanging out doing what he loves)
Just some observations and thoughts; hope these might help people who will be starting soon with the transition process. Sometimes I can be a little dense in the head but stepping back I can see why it takes some time. It doesn't make the waiting any easier - like waiting for the other shoe to drop. If you can walk away with one piece of advice, I hope it would be - develop patience.

Looking back on the calender, I see our first meetings with the adult service providers we chose were in December, one in the middle of the month, one close to the end. Today, I went to pick up the 'purchase order' with Will's plans so I could sign them and took them to the second organization he'll be spending time with for their signatures. Then they go onto another place for respite services and then hopefully to the state for review and finalization. While I thought the process would go faster, I tend to forget about the holidays and the fact we were dealing with multiple locations. I orginally thought each place does their own plan and submits it to the state but nope --- there is one 'purchase order' that includes all agencies and plans. The second agency sends its plans to the first to be compiled. Respite comes next.
So originally, I was hoping that Will would start his program in the beginning of February. Since the state still has not received plans to review and it has one more stop, I would guess we might be looking at the end of February, which would be 2 months after leaving school. It would probably be less time if so many agencies weren't involved but I feel this plan is the way to go for him. It is a good thing that plans can be changed. I read through the plans before delivering them and they seemed concise and measurable, not vague and non-specific. Both these agencies have been writing plans for a long time so I feel confident that there should not be a problem. Just remember: patience is a virtue and have some faith in those you feel you trust.

Saturday, January 11, 2014

Special Education Terms to be Familiar With.

Carried over from 1 lifetime 2 care 4.
** LRE. Lease Restrictive Environment. Mainly this is "to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are nondisabled; and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily".
** Related services. This is "transportation and such developmental, corrective, and other supportive services as are required to assist a child with a disability to benefit from special education, and includes speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, early identification and assessment of disabilities in children, counseling services, including rehabilitation counseling, orientation and mobility services, and medical services for diagnostic or evaluation purposes. Related services also include school health services and school nurse services, social work services in schools, and parent counseling and training". There are restrictions so please read at NICHCY site.
** Special Education. Special education means "specially designed instruction, at no cost to the parents, to meet the unique needs of a child with a disability, including instruction conducted in the classroom, in the home, in hospitals and institutions, and in other settings; instruction in physical education, and if the services otherwise meet the requirements of paragraph of this section -- speech-language pathology services, or any other related service; if the service is considered special education rather than a related service under State standards; travel training; and vocational education.

** Supplementary Aids & Services. Here you are talking "aids, services, and other supports that are provided in regular education classes, other education-related settings, and in extracurricular and nonacademic settings, to enable children with disabilities to be educated with nondisabled children to the maximum extent appropriate".

** Transition Services. As they make their way to adult services a coordinated set of activities for a child with a disability that is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child’s movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation; is based on the individual child’s needs, taking into account the child’s strengths, preferences, and interests; and includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives; and if appropriate, acquisition of daily living skills and provision of a functional vocational evaluation. Transition services for children with disabilities may be special education, if provided as specially designed instruction, or a related service, if required to assist a child with a disability to benefit from special education.

Friday, January 10, 2014

A mom and doctor share 'relief' & 'lucky' that her baby maybe a Down Syndrome baby.

LifeNews.com has a story of what is probably an unexpected response to news regarding a pregancy. Glennon, the creator of a blog Momastery, was told by a doctor after an ultrasound that her baby may be born with Downs Syndrome.
The family's reaction? "My family – we smiled at each other. We breathed one collective, THANK YOU, JESUS breath. Our baby was not going to die. Our baby was going to have Down Syndrome. Down Syndrome. Of course, I thought. Of course." Glennon has had experiences with Downs Syndrome children, from school to church, and finds them to be joyful. So she & her husband 'interviewed' pediatricians to find one who was experienced with such children. They knew they had who they wanted when the doctor said ‘You know, I don’t have a single family who wouldn’t tell you that their child with Down Syndrome changed their family in the best possible ways. These children, they turn your life upside down in all the most important ways. And most of us don’t get life changing opportunities like that. There are challenges -yes- but those challenges will shrink compared to the enormity of the new life you’ll have. The new perspective you’ll have. You are a lucky couple.’The day came when Chase arrived on the spot and there was NO Down Syndrome!! Not sure why things happened the way they did, Glennon says she feels a sense of loss of not having the child she thought she would have. She goes on.. "I know that these kiddos have something important to teach the rest of us. We who are so busy getting important things done and they who seem to know for certain what really is important and what is not. I think they are Little Teachers, if we have eyes to see and time to wait. [...] I think they offer something to the world that the world needs more than anything else. Attention to detail. Senseless joy. Acceptance and love for all." AMEN to that!!!

Thursday, January 9, 2014

Young Adults with Disabilities Taking Charge of their Life.

Some great stories from Apostrophe Magazine online. Young people finding their way working, doing what they love, pushing through any medical or intellectual issues they have. An inspiration to us all. Take a look!! (pictures from Apostrophe Magazine)

Meet Katie Rolf, 28 years old, equestrian, sports enthusiast, and President & CEO of Katie's Kookies a gourmet dog biscuit business which she started with her grandmother. Oh - she's blind with a mild case of cerebral palsy. She was born premature and went through many medical problems yet found help and support. The folks she met at school influenced her greatly. Katie has grown and has many interests and skills that continue to blossom and infect everyone who meets her. As her mom says, “I think what’s cool about Katie is people can approach her and have a little apprehension about talking to her, but pretty soon, she’s just a part of themselves,” she said. “She’s a natural teacher. She’s had so much adversity, and she’s overcome everything.” Read her story here.

Need water at NASCAR? Try to find David Taylor Jr, otherwise known as 'RaceCar Waterboy, LLC', located in Statesville, NC. He started his business in 2007 seling ice cold water bottles at races,
street festivals, county fairs, and the like with money from a local rehabilitation center. He did not get handed the money, he had to attend a business workshop, make a business plan and prove himself. He gets help from a circle of professional friends. Dave is continuing to grow and has started doing public speaking sharing what he does with others. For more information on David, see here.

Apostrophe Magazine led me to the Missoulian and to a story about 'Opportunity Resources'. The company employs adults with disabilities who make and sell picnic tables, benches, pottery, and a variety of other arts & crafts. When not making the picnic tables and benches, the crew does local clean-up at construction sites and the landfill.

Greeting cards that "provide a positive message not only for people with disabilities and their families but also for anyone looking to create a better community where they live, work and play" is what Todd Eisenger sells. His business, Inspires 2 Aspire, was started in 2009 through a grant and a wish to offer support to those families who give birth to a special needs child. Todd’s mom, Debby, said through their own experience, they knew there was a need for congratulation cards, especially when a child is born with a disability. “Some families have actually received sympathy cards,” Debby said. “We knew that families facing an uncertain future are looking for encouragement and support.” The cards offer special sayings such as: “Sometimes the birth of a baby brings unexpected challenges. We want you to know there’s hope… there’s joy.” or “Success, the greatest weakness lies in giving up. The most certain ways to succeed is always to try just one more time.” One excerpt from the back of a card reads: “The greeting card you are holding exists because people like you helped me achieve my goals. I was motivated to work hard at whatever I did and to never give up. I learned to believe in myself and others.” Todd also participates in Special Olympics and promotes health & wellness.

There are more success stories at Apostrophe Magazine. Take some time to read what a great job these young men and women are doing, not only helping themselves succeed but showing others that anything can be accomplished if you want it.

Sunday, January 5, 2014

A life changing event for a Downs Syndrome young man.

(picture from Today.com) A 20 year olds dream, especially sweet to this young man. They said 'yes' to Rion Holcombe. Catch this video of him reading his acceptance letter to Clemson University in South Carolina. According to Rion 'this is crazy'. The program is called Clemson Life Program and is designed for students with intellectual disabilities. Rion, the freshman, will be living on campus as well although he only lives about 1 1/2 hours away - his folks thought it best for him to take full advantage of the experience. When asked if Rion will miss his family, his answer was no different than any other college student - 'maybe eventually!'. Good luck Rion!!! Watch the video here.

Hate to start the new year with a rant but ....

As I sit here trying to get my head around the transition to adult services, I get confused. One meeting was held for planning Will's program with one agency for employment and they are now in the process of putting it together to give to the state. We are using another agency for community time and are going tomorrow for that meeting. My original plan with this second place is not going to take form as I had hoped but will be extra time - after his work hours are done and 'fun' time on Saturdays. I found out respite is part of these hours and the hours have to be planned out, even though I do not know when I will need respite. Bus transportation to and from his work program has to be applied for (this I figured and planned on) and have already done - it is in the state's hands. I guess what I am getting at is, I am very confused as to how the hours from his state plan 'level' are spent and what agency gets to plan them. Since the work program is his first or primary agency (in our case, the one where he will spend the most time), they plan first. Now the community agency plans next. Silly me is thinking the first agency will send the plan to the state to be evaluated then the second one goes and it too will be evaluated. Well, think again. The 2 plans need to be together to make sure they fit the 'level', that hours are used properly, the plan fits Willie (which I understand) and they all get put together under 1 'purchase order' for his 'level' to be paid. I understand this in one sense but I wish it had been explained better; I would have pushed for meetings with the 2 agencies to be held closer together. Another thing is that I am finding that the community agency is no longer doing respite - I have to go to another place!! I hope I understood that even though the Will's plan has to be state approved, it can be changed along the way. After the plan is submitted it may take 45 days to come back - yea or nea. Maybe... Will's caseworker told me the state is way behind and have let people go who do this??!! Government's great idea. Want to hear another one?? I called our local Social Security Administration (SSA) office the other day with a question about Will's SSI payment. The phone message prompts you to enter the person's extension you want to talk to. I did not have one, since I am not sure who has his case. I finally reach someone who tells me Will's caseworker is on another line and takes a message for her to call me back. So I get the worker's name and ask for her extension. Get this -- the person I am talking to tells me they do not give out extension numbers!! Really?? I remind this person that the SSA phone message prompts the caller for one; she tells me she knows but no one gives out extension numbers. Government wisdom!! Let's hope tomorrow's meeting is not over my head making me more confused and not getting us any closer to starting his new life in adult services, which keeps getting pushed out. Oh yes, by the way, his caseworker still has not called me back!!! Surprised?? Nooooooooo.


Department of Rehabilitative Services:

Updating the family calender, I am reminded of Will's IEP/transition meeting coming up in January. Seeing that, I have to go through his file of 'stuff' I have already started to apply for and/or need to update - to bring with me so I can find out what the next steps will be. He leaves school this next December - on to bigger and better things.

I find in the handouts from the transition seminar, information on our Office of Rehabilitative Services (ORS). The national website is under the Department of Education. The office offers career planning for students with disabilities, they help prepare eligible people to prepare for and obtain employment. Each person is assigned a Vocational Rehabilitation (VR) counselor who helps the individual and his/her family to make good choices in their planning.

The VR counselor offers assistance in a variety of ways: *providing career information
*assisting in choosing employment goals, services, and training
*develops an Individualized Plan for Employment (IPE)
*provides information on programs and services for transitioning
*helps with guidance and counseling
*vocational assessment & community job trials
*on-the-job training

You need to apply to ORS. Ask your child's teacher who from ORS is assigned to your school and a parent or guardian MUST attend the meeting if the child is under 18 years old. If the counselor determines that a vocational assessment is needed, arrangements may be made through school and done during school hours. The results will be shared with family, school personnel, an evaluation team and the counselor - all can help the student develop career goals.
ORS may even help pay for post-secondary training, certification, license, or college degree, books, supplies, specialized tools - you get the picture. It may even go as far as helping to pay for bus transportation and gas. Assistive technology can possibly be included or software if needed for a computer to complete assignments.

ORS offers a lot of help and direction for those getting ready to transition out into the work world. Make sure you contact your local office or school for any information you may need.

Michael Garcia

Three Cheers for Michael Garcia!!!

(Milo's picture from 'Today Moms' website)

I came across a story on "Today Moms" about a waiter in a restaurant in Texas who defended a 5 year old boy with Downs Syndrome. Milo was at the restaurant with his family, who are regulars, and was showing off his new words and telling Michael Garcia, the waiter, about his birthday. At another table nearby was another family who are also regulars. They asked to move away from Milo's family and a man sitting there said 'special needs children need to be special somewhere else'. To which Michael replied 'I am not going to be able to serve you Sir.' YES!! Good for you!!! More people should be like you Michael.

Michael was afraid he would lose his job but more people have been turning up at the restaurant to shake his hand. There have been lots of postings on the restaurant's Facebook page. The family has been going there for so long, Milo and Michael even have a special way of going to their table when the family arrives -- Michael always carried Milo.

As many other families, they have had their share of stares and parents pulling their children away from Milo when out, like on a playground. We too had something similar happen when Will was young. He was about 4 and we went to a family type of restaurant, sat down next to a party of 4-5. Will, who is autistic, is non-verbal and back then had no way to communicate except to make a noise (AH-AH or similar) when he wanted something. A woman at that table told us we should leave him at home and that she too had special needs children and they would never act that way when out. My mother got on her 'grandmother high horse' and told that woman if she didn't like the noise, feel free to move to another table on the other side of the restaurant - her grandson is fine and that's the only way he can express himself whether she liked it or not!! The wait staff kept on serving us and was attentive to Will. We're going back probably 16 years ago, so keep doing what they were doing was probably comparable to a member of the waitstaff standing up to a customer.

They stayed put but were not happy and the evil looks continued.

We can only hope that this ignorance will someday disappear. As Milo's mom puts it “Maybe next time they’ll think twice before they utter those words or say something derogatory about somebody else.”

iPad Communication

I attended an iPad workshop that Will's teacher had told me about. It was given by a local company, Tech Access, that evaluates and gives special needs students communication devices to use while in school and to take home during this time as well. There were only a few of us there but this seems to be a useful tool for those specializing in Speech Therapy and are teacher assistants working with special needs students (one other person was a parent).

While the instructor went over all the basics of how to set it, use it, make folders, delete icons, etc., we did touch upon some apps that are good for special needs. Going through the App Store can take time - as he said - you really have to be specific or you get thousands of results. There are free apps and those with a small fee, as well as those that can cost upwards to $200.00 (US dollars). The program we use for Willie is called 'Assistive Chat' which I think was about $35.oo US dollars. Others at the workshop were using 'Proloquo2Go' which runs about $200.00 It depends on what your child can do -- "Assistive Chat" is more for someone who can type and knows words; Prologuo has pictures that you can use along with words. One way to help with this dilemma is to go to AppShopper. This is NOT connected to Apple. There you will find a lot of apps for iPads and iPhones as well as Macs, along with their price changes (if applicable), new apps, app updates. Check it out - great site!! One drawback, even on the 'iTunes store', is that the majority of apps are for younger children, not high school. Even though he does work like a younger student, the pictures and manner of presentation is too young for him. So if you have a pre-schooler or elementary aged child -- you are good to go!!

One good one for those who like to 'see' the results of an action -- 'Songify'. Speak or breath into your Android device and the app will turn the action into a song.

Also, he mentioned a website called 'Moms with Apps'. While this site will include all sorts of apps for all varieties of skills and needs, it also invites app developers to share their programs -- see "App Friday". I checked out 'App Resources for Special Needs', went to 'Mashable article on iPads and disabilities' and not only found apps for children but a couple of them for seniors: one memory practice one that was created by someone who's mom has Alzheimer's and two for medication reminders (though one was NOT available in the US store). You can check out a previous post regarding 'Tech Items for Seniors' that had ideas from 'Senior Savvy' regarding the same.

Of course YouTube has everything!!! The instructor was talking about different types of a stylus pen for people who cannot type and have a hard time holding onto a pen - type device. Of course you can buy one but you can also make your own. Check out a variety of YouTube videos to make one. TechAccess also has instructions.

Spend some time in the 'iTunes store' and the 'AppShopper'. Check with your child's teacher and speech therapist so see what will be good. Find a workshop in your area. Time well spent!

Will's New iPad for Communicating.

We picked up an iPad for Will this weekend and downloaded 'Assistive Chat' for him as his communication program. There were 3 choices for a voice output, so I played each for him and let him choose - one was male, one female and one 'mechanical' for lack of a better word: Ryan, Kenny and Heather. He chose Ryan.

There were choices for the voice output to 'speak' every letter, word or sentence when done - we chose the latter. As a person types, there are predictive words that come up, so you really do not need to spell the entire word - just tap the appropriate tab.

As per usual, Will has attempted NOT to use it - this is his usual M.O. When something is new, he puts off using it, especially when he feels there is no need. "Mom knows what I am talking about!", I am sure this goes through his head - which I do but a lot of people who don't know Will's version of sign, have no clue what he is saying and THIS is what he needs to be prepared for.

I think once he gets to school and can see the other ones that are being used, he'll get into it. He is also more apt to follow his teacher's constant request to use it, rather than ours.

Getting Excited About Communicating the 'i' Way.

Today we had our transition meeting regarding how things stand for Will - what we need to do, who we need to contact, etc., since he will be done with school in December of this year. It seems we are on-track, no additional school testing needs to be done, unless some social service agency needs it. Right now, we wait to hear from one agency; we are not sure if we need it since he has been given a case worker at another one similar in mission. Vocational assessment will probably be done in the summer.

Anyway - I spoke with his teacher and asked about an iPad for Will to use instead of his current communication device. (See older post - "Communication Devices"). She was all for it; he had experimented with another student's a short time ago and Kerry said it went well - he learned it quickly and handled the touch screen keyboard nicely. So we will be getting one soon.
(picture of Will's teacher's book)

Kerry also gave me a book to look at in the meantime. I figured we would be going with the app "Assistive Chat" but "Sentence & Question Builder" looked good too, maybe a nice sister app. The book she gave me is called "Apps for Autism" by Lois Jean Brady M.A.,CCC-SLP, , 2011 by Future Horizons. You buy the apps from the 'iTunes' store. The book has over 200 apps that help improve communication, behavior, social skills, etc.

(Steve Jobs picture from iPad Wikipedia)

The book covers A LOT of information. Lois discusses how technology is changing so fast. As she puts it: 'New mobile technologies for people with autism are creating new opportunities at an exponential rate. The message is that we can create tools that can make profound differences in the trajectory of people's lives and in education in general'. 'Thank you Apple! Finally, devices that support communication, scheduling, academics, social interactions, video modeling, and leisure time are wrapped up in hand-held, super, cool packages. Individuals who cannot use a mouse or keyboard can use the iPad, iPhone, and iPod touch because there is no disconnect between the screen and the keyboard/mouse.' As she also states, there is a big difference in price between the older communication devices (which can run $8 - 10,000 dollars and take months to come in after ordering) and the new Apple products that run more or less around $500 and have apps that you download and use right away. Yes - there may be a charge for some apps, some are FREE. Still, it's a whole lot LESS money. I would suggest you speak with your child's teacher and speech/language person to discuss good options.


I just want to mention some of the categories in the book and some of the apps. The book gives current app prices (prices may change over time) and gives website addresses for each app so you can look it up. I checked out a few. One I could not find, nothing came up, but the others looked great.

There are 12 categories in the book, each with plenty of apps to choose from. I'll just list a few -- apps to get the word(s) out; sign language; articulation; concept development; hygiene & pre-vocational; graphic organizers & visual supports. Apps are: autism shapes, small talk letters, numbers, colors; idress for weather; uzu; body language; is that glutten free?.

I highly suggest you try to find the book ($29.95 US if you want to buy it). I think Kerry said you can find all the apps on the iTunes store if you have an account and they constantly add more. I can't wait to try Will's!!! Our work is set out for us this weekend. I would love to hear from anyone out there using these already - give me/us your feedback -- please!!!!!

Robots help kids with autism.

Robots Help Children with Autism:
There is a school in England using robots to help reach their students with autism. The robots vary in style but researchers are finding that over time, the boys and girls are opening up. The researchers find that the children feel comfortable around these robots because they are predictable since autistic people have a hard time understanding facial expressions. These children also have a hard time with touching - some of the robots are covered in silicone patches to feel like skin. There is another version looking more like the traditional robot that moves and dances. Researchers are also hoping to increase communication and social skills.
In the case of the robots looking like children, some of the students are imitating its responses. A scientist controls the robot and will make it laugh, frown, blink, or wave its arms. Some children are starting to react to its movements by saying what it is doing - like 'happy' or 'sad' when they recognize a facial expression. As well as things are going, they are warning that parents should not rely on these robots totally since autistic people still have to deal with the real world. Also there needs to be more studies on how this will work over time.You can read the following stories from a variety of locations regarding this great idea.Now Dancing Robots to Teach Autistic KidsRobots'>http://www.msnbc.msn.com/id/41967936/ns/health-mental_health/t/robot-teaches-autistic-kids-interact/">Robots Teach Autistic Kids to InteractRobot'>http://www.huffingtonpost.com/2011/03/09/robot-helps-autistic-kids_n_833321.html">Robot Helps Autistic Kids

Transition and work

As I continue to do the paperwork and contact the appropriate agencies for help, I am also looking at agencies that help find work. There are several. There are companies that hire people with disabilities; my list is for those looking for something else.

I also think of an agency that interviews the person, their family and friends to see what he/she might be interested in doing on their own. I like that idea. This started me thinking, my husband would say 'look out' or 'I could smell that smoke', about possible types of jobs that could be considered a business that they could do, work from home or a family business. I understand they cannot make a lot of money due to SSI regulations so it would be part-time/on a small scale. These can also be done using a mentor. There are agencies that have folks who want to mentor a challenged child/adult or use a Best Buddies person.

Here are some possibilities - just ideas I toss around in my head especially after I leave a place or talk to someone who owns a business:

*bake cookies or cakes to sell to friends or family (this one came up during a seminar - someone's son was doing it and loved it);
*walk a dog/take care of a pet for neighbors or family;
*work with a local small business -- we go to a local car repair business, I think a small 'stand' could be set up selling coffee and snacks, on a Saturday for instance. After visiting mom at the nursing home and hospital, how about working with a local gift shop setting up a place on the weekends selling some items or take some items from the hospital gift shop around to some floors and help sell. The young businessman or woman keeps a percentage of what they sell. At nursing homes, they can sell on weekends or family nights;
*collect scrap metal, cans and/or bottles and sell them. They would be helping the environment as well;
*if they are artistic do some art work and place it in local businesses;
**this one I had started trying to work out a plan to do for Will and maybe a few others in his group (or for his work group in school) but due to family illnesses and my work gearing up I did not get far. I still think it is viable. The idea came from my mother actually -- she was commenting on how she has a hard time getting to the cemetery to put flowers on family graves. So what about a business where people can go for them? They advertise in churches, funeral homes; they charge a straight fee to order either fresh or artificial flowers or a flag; who goes can clean the stone a bit and maybe say a prayer. Take a picture to show their client what it looks like.