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.

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...


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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.