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.

Thursday, January 30, 2014

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

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

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

Saturday, January 11, 2014

Special Education Terms to be Familiar With.

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

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

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

Friday, January 10, 2014

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

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

Thursday, January 9, 2014

Young Adults with Disabilities Taking Charge of their Life.

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

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

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

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

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

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

Sunday, January 5, 2014

A life changing event for a Downs Syndrome young man.

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

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

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


Department of Rehabilitative Services:

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

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

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

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

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

Michael Garcia

Three Cheers for Michael Garcia!!!

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

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

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

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

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

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

iPad Communication

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

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

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

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

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

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

Will's New iPad for Communicating.

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

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

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

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

Getting Excited About Communicating the 'i' Way.

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

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

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

(Steve Jobs picture from iPad Wikipedia)

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


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

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

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

Robots help kids with autism.

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

Transition and work

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

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

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

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