Sunday, September 29, 2013
Not too many things get me really upset or annoyed to the point where I will publically say something but... I am sure that you have all heard about some ruthless people abusing the wonderful accommodation that Disney allows families of special needs children. It is totally despicable to hear that those with means and others with no scruples or regard for families who need extra help have found a way to trudge and barge their way into a situation they do not belong in. They are lazy with no conscious and no concern for anyone else but themselves. For them, money is their power and means more than morals. The example that they set for their children is beyond reproach and how they can look themselves in the mirror or sleep is beyond me!! I hope that one of those families is reading this right now and can email me if they have a problem with what I am saying and my disgust for them. When our kids were young, we took them to Disney World several times. At the time Disney did not offer anything like that -- we did ask. So we stood in line like everyone else and WAITED and WAITED and WAITED the best we could. At times, one of us would Disability Scoop, my understanding is that Disney's new rule is a version of Fastpass: Instead of giving visitors with disabilities and their family members a card that allows them to go directly onto rides, the guests will be given a scheduled time period to return to get faster access to the attraction. In essence, guests with disabilities and their families will get to use a new version of the Fastpass tickets offered for certain rides to all guests. It is called the Disabled Assistance System and will start October 9. The change is explained in more depth here Picture from Disney website.
Wednesday, September 18, 2013
This is from an online newsletter from my chiropractor, Dr. Gibson. Our family has been going to him (starting with his predecessor) for a long time. We started taking the kids when they were small, my in-laws go, my mom went. I saw this article and thought it might be something to share. JAMA Pediatrics showing this link. Charles Bankhead of Medway says "The odds of autism increased significantly in children whose mothers gave birth with induced or augmented labor, a study of more than 600,000 births showed." The study was done over an 8 year period and looked at 625,000 babies. They were then matched with their school records and autism diagnosis. Time Magazine's online Family & Health section, August 13, 2013 states "For children who were born after induced labor, the risk of autism was 13% higher compared with that of children born to mothers who were not induced; speeding up labor was associated with a 16% higher risk of autism, while both induction and augmentation were linked to a 23% greater risk of autism in children." In the study results, the authors report "Compared with children born to mothers who received neither labor induction nor augmentation, children born to mothers who were induced and augmented, induced only, or augmented only experienced increased odds of autism after controlling for potential confounders related to socioeconomic status, maternal health, pregnancy-related events and conditions, and birth year." They concluded, "Our work suggests that induction/augmentation during childbirth is associated with increased odds of autism diagnosis in childhood." This is something you may want to check for yourself. Medpage Today Time Magazine online Easton Chiropratic Picture from Easton Pond Chiropractic site.
Monday, September 16, 2013
After writing the story about Milo and Michael, it reminded me of the time I decided to try to have Will meet Ming Tsai. Will loves watching cooking shows - 'Lidia's Italian Kitchen', 'Nick Stellino', 'Simply Ming'. Will was watching one show and getting the biggest charge out of Ming and his mom, who sometimes appears on the show. So since they are somewhat close, I decided to try and see about going up there. His restaurant is 'The Blue Ginger'. I emailed the restaurant and was surprised to hear back within 48 hours from his assistant. She said it would be great to have Will come up. So we started going back and forth a few times and finally came up with a date. You would have thought Will was the celebrity that night. When we got there, they called him by name and took us to our table. A couple of the hostesses came over and talked to us for awhile. Ming was there but was busy with other people but after about 10 minutes, came over to us. At first Will didn't seem to care or didn't recognize him, we're not sure. Ming saw one of his cookbooks nearby, got it and put it up near his own face -- Will's eyes lit up and a big smile!!! We talked more and I told Ming Will likes to collect cookbooks so Ming autographed that one and gave it to him.
According to disability scoop, when Riley, 8, was out with his family eating and was getting a little rowdy, mom knew people were getting a little annoyed. Apparently Riley, who is non-verbal, has been acting up on public outings lately. It so happened that the waitress then came over to tell the family that another family had paid their dinner bill and left them at note: “God only gives special children to special people,” read the message. As mom put it, “To have someone do that small act towards us shows that some people absolutely understand what we are going through and how hard it is to face the public sometimes. Little did he know what struggles we had been facing lately and this was surely needed at that moment.”
Sunday, September 15, 2013
I was reading the Sunday paper and found a small write-up on an event at one of our beaches -- a surfing camp held by Surfers Healing.Surfers Healing was founded by Israel & Danielle Paskowitz for their son Isiah, who was diagnosed with autism at age 3. Israel was a competitive surfer and owns Paskowitz Surf Camp. The post says the ocean was the one place that Izzy seemed to find respite. The organization teaches autistic children to surf.
Friday, September 13, 2013
The past few weeks, I have been calling local adult service providers to see which ones may be taking new clients in the next few months. As it stands, our state government is revamping the work system with these agencies. Some are allowing people to visit and others are not. So Will & I started our visits and saw 4 places. One agency let us come in to talk and get a tour but thought they were not taking names for a few months (Will does not leave school till December anyway). The other 3 were open to new clients. Note -- when you start this process, take your son or daughter with you. It is good to see their reactions, watch them to see if they are interested in anything, if they take note of any activity they see. Let the staff & current clients there interact with them. Ask your questions (see previous post regarding questions for service providers). Your questions should be answered and nothing should be rushed. You should even have time to sit and talk to the person in charge of intake. If the person is real good, they will even provide you with information you have not even thought of yet. They may know about other programs in other agencies and how they are the same or different - if not ask!! Make sure people ask about your young adult and what he or she has strengths in or weaknesses, what do YOU want your child to get out of the program. Ask if he or she can spend a trial day there. If at all possible, have your letter from the state which shows the level of service components that your son or daughter will be getting - based on the SIS eval that was done. Back to the visits -- we had 3 great ones, learning lots about each from some very nice people. Though Will was more interested in getting home, I did find him peeking at a few things in each place - wandering away to look. Anyway, when we got home, I typed out the 3 places we saw on his iPad. Our visits took place on different days, so when I read the names to him I mentioned something different about each place (NOTHING to do with activities or person we spoke to). One - the place we went to with your brother; two - the place that had 2 buildings; three - the place we went to today. I asked him if he liked any of these places -- yes. Point to one you like - he did; do you like another - yes. Point - he pointed to a second one. Then I did it again the next day, writing the names in different order. Same result. In actuality, these were the places I liked as well and thought would be a good fit. I had not mentioned anything to Will about these either. I also spoke with his teacher to see if she had any thoughts on these and she was in agreement with me about why I chose the 2 I did. Why? I liked the social activities at one because they had similar ones to school and a wonderful 'chill out' room when people get overwhelmed or frustrated (I want a room like this in my house). The other agency had a work program also similar to school that will be expanded on into the community - so I thought it would be a good transition for him. His teacher is the one who told me you can split services between 2 places!! So now we TRY to get into one for social activities and one for work. BUT ARE WE DONE?? NO!! GUESS - MORE PAPERWORK!!! So now the next phase... I will keep you posted.
Monday, September 9, 2013
I received a notification from the Google+ community of 'Special Needs Clothing' (which shows some nice things) showing a pair of shorts with an elastic band top. Of course, Will has been wearing this type of shorts and pants FOREVER since it is the easiest thing for him to put on and get off (his finger dexterity is not good for buttons and zippers). In fact, this type of pant almost caused a fury in his old junior high school years ago -- apparently there were incidents of kids being 'pants'. So the school was outlawing elasticized pants and shorts. My letter to the principal wanted to notify him that for Will, or anyone in our group who can't handle anything else but this type of clothing, it would be more of an incident to have an aide spotted in the bathroom with hands on the child's zipper; though knowing the staff, it would be innocent as they would be helping the child with their clothing using the toilet. BUT how would it look??!! Anyway our group was left out of this ruling. OPPS!! Sorry for wandering off my initial conversation!! The best shoes that Will has worn have been a couple of stylesLock Laces'. They are elastic, bungee laces, no tie. Previous post called 'Helpful Shoe Laces' gave reasons why it might be a help for those with medical issues.
Sunday, September 8, 2013
I was watching the Today Show, when I thought I might head out the door to run an errand. I left the TV on while I got my keys and wallet -- so glad I did!!. I was able to watch a video and listen to this story (through a few tears I must admit). Jordan Somer, a young lady from Nebraska, started this pageant when she was 13 years old for young ladies in the area who have disabilities. "It isn’t about who has the best voice or the prettiest dress. here.
Wednesday, September 4, 2013
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
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.
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.”
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.
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: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.