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.

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'.

DRS

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
* ETC

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 AM NOT PROMOTING ONE DEVICE OVER ANOTHER. JUST SHARING WHAT I AM READING AND OBSERVATIONS AND WHAT I AM THINKING!!!!!!

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

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

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

Robots help kids with autism.

Robots Help Children with Autism:
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.