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, July 27, 2013

More Ranting - Is Summer Vacation Almost Over?

Well, here is Will with his favorite things to do when not in school or out with us -- computer to watch his videos or movies, access to Ebay or Amazon or iOffer or PBS to check on things that he wants for Christmas or birthday (also in December) and the printer (so he has a picture to show us what he wants) and a radio (which is probably hidden under his book so I can't see it since he knows he can only do one thing at a time). From the moment he gets up to the moment he goes to bed, the major questions have to do with food (are we eating hamburgers - his favorite, and when is vacation - going away vacation, a trip). It also has been a summer of looking into adult services for him so we make visits to places. Anyway - back to school starting soon -- YES!! I can tell when it is time for the regular school schedule to start. With Will -- he is always hoping I am leaving to go out (he stays when a brother is home - if not he comes with me). He is looking for me to go shopping or asking about a work appointment. Since he is non-verbal, I usually get followed around with him signing 'work' or looking for the shopping list, or just get in my face and wave 'bye'. He'll see the bag I take with me for my appointments and start waving 'bye'. In the past, he has taken it upon himself to get my pocketbook, take out the car keys, get my coat, open the front door and wave bye to me. I never realized either that I am that boring or a major pain in his side. As for my youngest son, he has gotten to the point where he doesn't argue about his summer reading, will GLADLY go and mow the lawn and has actually offered to stay with Will if I need him. My oldest is working so I don't have to worry about him; he'll start a community college in the fall. He's trying to see what he wants to do; he is also waiting for Americorps to get back to him -- it looks like he is in, just waiting for some final paperwork. As the time gets closer for classes to start, I do think they are ready. Will actually likes school (his summer program is still going for another week) and I get no issues when he has to start up again. He is an early riser so that part of it is no big deal. The young one though has been sleeping till 10 or so -- a rude awakening to have to get up at 5:45 soon to get to the bus!!! I keep telling him 'enjoy it now'. Mommy will enjoy getting the house back without running into their 'stuff' and looking at their backsides in front of the refridgerator, them staring at all the food there, stating that there is nothing good to eat.

Friday, July 12, 2013

Questions to Ask Service Providers.

I started a rant the other week about not knowing what questions to ask as Willie & I set out to visit adult service agencies for placement when he gets out of school. All I can say is - it really helps when you clean your room!! I decided to go through papers that I have been collecting from seminars and workshops and teachers; I knew I had a lot of duplicate sheets. Well, will wonders never cease!!! I found a handout from the RI Statewide Quality Consortium titled (guess)--- 'Ideas for Some Questions to Ask When Looking for a Service Provider'!!! Amazing!! There are different categories to review with questions specific to each. I will give a sample of each: 1 -Selecting a Service Provider: what information is available about your agency and in what format, what is the size of your agency - people served & number of employees, what kind of services do you offer; 2 - Provider Qualifications: what is your staff turnover rate, can I have a copy of your more recent licensing survey & agency review, how do you address safety issues; 3 - Services/Supports: describe a typical day for a person, do you offer individual supports vs shared supports for day programs, does my family member have to contribute to the cost of services; 3 - Family Support: what kinds of opportunities do you have for family members to get involved with your agency, can I come by & visit at any time, do you offer any training or educational opportunities for families; 4 - Agency Planning: are people with disabilities and families on your Board of Directors & how many, what are the primary goals of the agency, do you have an agency Mission & Values Statement; 5 - Medical/Health Care: who will assist my family member with daily routine health/medical needs and how are they trained, how do you handle situations when people refuse to take medication that is prescribed for them, how many nurses do you employ and how often does the nurse see someone in their home; 6 - Concerns/Other Issues: who can I call if I have a concern about the services my family member is receiving, what is your grievance process, how many grievances have been filed in the last year. Also this handout lists as another resource - Quality Mall. I had never heard of this before; I checked it out. It is based on the premise of 'person centered services supporting people with developmental disabilities'. The categories are set up as stores and the articles are set up as products. It contains a lot of information so I would suggest a look. If you want access to the 'Ideas for Some Questions', click here.

Tuesday, July 9, 2013

Apps for Children.

During a seminar for iPads, 'Moms with Apps' was mentioned as a great place to get information. It apparently was started by 4 moms developing family-friendly apps. The site describes its concern for privacy and how apps are handled. The site also gives advice on how to review an app and how to manage an iPad. 'Moms with Apps' also has 'App Friday' promoting highlighted educational apps which are either free or heavily discounted. I chose a few to see if they were available on the iTunes store - some were and some were not, these I found by Googling the name and they were offered through other resources. I found, through their 'Jellybean Tunes App Report' books and games. They offer a separate category for 'Apps for Special Needs', some with demos to view, designed to help with speech/articulation, fine motor skills, reinforcement of behavior, imaginative play, etc. There are apps for children who are verbal and non-verbal. We are using 'Assistive Chat' for Will, which we downloaded from iTunes - he types out words and/or sentences and it has a verbal output for him so we hear what he typed. There are others using 'Prologuo2Go', also available on iTunes, which offers pictures to match up to words to communicate. Since we are talking about the iPad for the disabled, the site shares 40 iPad apps for the learning disabled, with a page for reviews for autism apps. They offer 10 tips for downloading family friendly apps: 1 - have a goal; 2 - try some free apps; 3 - if it is free, know why it is free; 3 - know your options under settings > general > restrictions; 4 - decode the iTunes app description & preview the app before 'hand off'; 5 - don't be shy: if you have questions contact the developer; 6 - learn how to 'party' with App Friday; 7 - read the news on the App Report; 8 - befriend the bundle (of apps); 9 - watch the stars (on their Banner Program); 10 - leave a review in iTunes for others to see. While it seems that the majority of apps are for young children, you can go to the "Appy Mall" for more advanced programs that include high school and college. Moms for Apps also encourages those developers of apps to work with them, offering a forums for developers and groups. They even offer advice for the best way to work with schools on their 'Collaborating with Schools' page: make educational content the most interesting part of your app; include multiuser functionality; provide progress reports through apps; give away accessories; educate your schools about events such as App Friday; provide materials to help integrate apps in the classroom; attend technology meetings at school; connect with the school's PTO/PTA. Definitely check out the Moms with App site for updated information and reviews.

Monday, July 8, 2013

The Ticket to Work Program.

For people 18 to 64 who are disabled, there is a program through SSA called 'Ticket to Work'. It is a free and voluntary program that gives social security recipients, disabled adults and young adults, work choices to create better lives.. I found out about this through a phone call I took for Willie, since he is non-verbal. It sounded good but Will had told a case worker from ORS that he was not interested in working but I think if he starts to get an income, he might change his mind. For more information, click here... (picture from the SSA website)

Sunday, July 7, 2013

A Story of Love and Perseverance.

I read a great story that made me want to cry and almost made me ashamed of myself when I say I cannot do something. It was called 'Winning the Race' and it was in the latest issue from Sams Club, July/August 2013 Healthy Living. I found the Team Hoyt website which you should take a look at for a variety of reasons. For me it was a kick in the butt, just do what I need to do and not complain; it is inspirational; it is love. When Rick was born in 1962, his umbilical cord was wrapped around his neck, doctors said he would be a quadriplegic with cerebral palsy. While the times then said to put him in an institution, his parents decided to raise him as they would any other child. There were struggles to get him into school but a group of engineers at Tufts University helped to build him a communication device after someone there made a joke and Rick started laughing. This interactive device allowed Rick to tap out letters - his first 'words' were 'Go Bruins'.
When Rick was 15 he told his dad, Dick, that he wanted to take part in a 5 mile run for a lacrosse player that was paralyzed from a accident. Dick then pushed his son's wheelchair through the race and finished next to last. As the story goes, at the end Rick typed out "Dad, when I am running, it feels like I'm not handicapped". Their next 10K race saw a change in the wheelchair - a lighter one with other modifications. They finished ahead of half of the 300 runners. According to Dick, Rick 'just loved to be in the middle of the runners - always had a big smile on his face with his hands up in the air'. While many applauded the team, others (those who had disabled family members) criticized them stating that Dad was looking for glory for himself. Yet, they kept going -- on to the Boston Marathon. There now is a bronze statue of them, they are the face of the Boston Marathon.
Team Hoyt has completed more than 1,000 distance races and triathlons, including 6 Ironman competitions. In 1992, they ran & biked across America in 45 days covering 3,735 miles. In 1989, The Hoyt Foundation was started to help America's disabled youth integrate into society and compete in endurance events; it has 20 chapters around the world. Oh, by the way -- Rick graduated from Boston University in 1993; it may have taken him 9 years to earn his degree in special education but he did it. As Dick said, "Our message became 'Yes You Can!' That has always been our motto with Rick. There isn't anything you can't do as long as you make up your mind to do it." (pictures from Team Hoyt website)

Monday, July 1, 2013

Checking out Adult Services.

I guess this will be, at this point anyway, just a stream of consciousness writing since I have not found any detailed advice in writing. Will and I are starting to check out local adult service providers for young adults with disabilities. Since I received his letter from the state specifying what level he is with funding for services, I thought we could start. I wanted to do this awhile ago but was told by someone from a state agency it was best to wait for this funding letter, which came from his SIS evaluation. That way the agency could see what they would need to work with him. I called a local place that has been around for years and I know people who work there and families who have had children there, and made an appointment. Then I started to think -- what do I ask about, what do we talk about?? Do I bring school information, like his IEP?? I started to look online at state offices that deal with these providers and could not find anything to guide me. So Will and I just went there and flew by the seat of our pants. FYI - take your child with you to gage reactions. Do they see anything that interests them, do they react one way or another to other people there or events going on, do they seem to want to stay or leave? I had a chance to talk to a woman I have known for a long time, who is the liason for families. Her son is there as well. I learned several things from her -- look at 3, 4, maybe even 5 places, just because they will see you and talk to you doesn't mean you will get in. The state is changing programs and may with hold funding until new plans are in place, so the agency may only be looking to deal with current placements. You cannot 'reserve' a spot - if you like a facility, you can petition the state to get in. Then there is more paperwork like doing educational, community involvement, and vocational plans and it may take 45 days or longer for an answer since plans may have to go back and forth to the state, if they need clarification or they don't like it. It is a good thing to start early, like at age 20 because it can be time consuming BUT they may not want to deal with you until the young adult is closer to 21. This facility was nice, Will just was not interested. Plus they are not taking new people at this time - just servicing their ccurrent population. As I continue to contact places, I am still looking for a 'guide' if you will, of things to ask and consider. I just hope that if I cannot find one, the next interviewers will be as forthcoming as the last. If anyone knows of such a 'guide' please let me know. Maybe I can put one together as we go around to different places.


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.