We have navigated through Early Intervention, Pre-schools, Speech and Language, 504's and IEPs. One thing I must say (after years of watching other parents trying to get educators, screeners, coordinators to listen to them regarding their children) is DO NOT lose your temper!! I have been in the area while parents have harassed and bullied those people trying to help. This will not get you anywhere. There is a line between being argumentative & being assertive. We are all protective of our children and want the best for them. We can also get carried away with our feelings. These people in the education system are doing the best they can, most times, and sometimes their hands are tied, being subject to higher authorities (and budgets).
I did do something early on to try to prove a point: when Willie was in Kindergarten, his Speech Therapist, Teacher and I knew he needed some form of communication device ( something I had never heard of back then only thinking that it would be nice if there were such a thing). BUT as you can guess, there was resistance from the 'powers that be'. So we took matters into our own hands. Willie wanted to write, to communicate. So one of our neighbors was able to get us an old laptop that had 'Word' and we had Willie typing stuff on it. We would send it back and forth to school and they had him use it to communicate and do work. It took about a year of teachers showing it to Special Ed people and reps from the communication device company but he finally ended up with a device and has had one ever since. No need to yell!!! Willie did the asking for himself.
The 504 Student Accommodation Plan.
Back in 5th grade, our oldest needed some additional help. He was in a local catholic school which we chose due to its smaller size classes starting at 1st grade. He did Ok until the 4th then started to slow down, going to summer school for help. After speaking with his 5th grade teacher, we decided to get him on a 504 plan. What this did was give him certain accommodations for schoolwork: 1-reduced or modified homework assignments; 2-extended time for test completion/other timed assignments; 3-additional resource assistance if needed; preferential seating; 5-additional assistance for math as needed. All this helped him to have a great year. This followed him to 6th. At this school, 6th was Middle School so he started changing rooms and teachers for classes.
The 1st quarter was Ok but then he started lagging behind. The 504 helped but I think he was not ready for the "middle school" environment. At the end of the year, he was failing a major subject and not doing well in one other. The principal called on the last day to fill me in. I want to say here that ALL school personnel were GREAT in working with us - they did a wonderful job keeping us up-to-date and included. But the way things were working there, even tho our son was going on to 7th, if he failed a major subject the first quarter, he would be put back in 6th. We could not let THAT happen. So I went to our public home school, spoke to the principal (who was wonderful and understanding) and decided he would go there and repeat 6th grade. The 504 followed him there too. He was put in a class with a young male teacher who had a female resource teacher there 95% of the time (they worked well together - she acted like a student sometimes sitting with the kids and asking questions when there were puzzled faces in the group). Well, he had a great year: grades nothing below a B and received several awards at the end of the school year.
Off to Junior High and the 504 follows. He starts off strong and about the middle of the school year, our team meets (as our teams have met in the past years, at least once a year). The decision is made to cancel the 504 - he does not need it anymore. So we do that and he ends Junior High just fine. I can attest it works - talk to your children's teachers if you have any concerns about your child needing extra help. Sometimes it is even simpler - like for our youngest. He was having trouble reading in the 1st grade. They put him into a Title One reading program and by 2nd grade he was caught up. Work nice with the teachers!!! They do want to help.
The IEP (Individualized Education Plan.
We have been working with IEPs (Individual Education Plan) for years with Willie. It is a process that takes time and a variety of professionals and family members get involved. It might be a good idea to contact your local Special Education office if you think your child might need one for school - there should be a 'Parents Guide' to the regulations that you can read. This way you will be prepared for the process.
It does get easier as time progresses and everyone gets to know each other and winds up on the same page, most of the time. The plan follows the student from one school to the next. Parents always have input into what the IEP should cover and there is always the opportunity to adjust the goals set forth. It covers academic as well as personal hygiene goals (if needed).
As your child gets older, it can accommodate work program goals. Your child should be involved in a work program in high school both in school and in the community. Some junior high/middle schools have in-school "businesses". Will's school had one: the students ran a snack-selling store from their room, where teachers bought snacks and drinks. The students had to handle the sale, interact with their customers, handle money. They would also go out to a local warehouse store and buy their supplies. When back to school, they had to inventory their items, price them and stock their store. They also made copies for teachers - copy, collate, staple, etc. Now in high school Will can also help collect attendance sheets, work with maintenance with the recycle items and other small jobs around school. Every semester the students work in a local business one morning a week, interacting with staff, learning to follow directions and accomplishing their tasks. All this goes toward reaching goals set with the IEP and getting them prepared for when they leave school, hopefully for a job in the community.
Will's Senior Project.
Yes, even our special needs group had to do a Senior Project. They were expected to put in the 15 hours of mentor work, have pictures (slides, videos, etc) taken of their meetings, do a physical item for presentation and write up some form of report. They can do a Power Point Presentation or some type of report on a backboard.
Will learned how to make pizza from scratch. We have a friend who is the Head Chef at a local Italian restaurant and he graciously agreed to mentor Willie. The two selected 3 recipes together (Willie had to type them into his communication device so it could go back and forth to school and kept until final writing time), went shopping together at a grocery store, then worked in his mentor's kitchen making the dough, mixing the sauce, covering the pizza, baking the pizza and of course eating the pizza.
Will also had to type in his device what they were doing on these days. I was able to take pictures of the 2 of them working together.
At school, Willie's teacher takes all the photos, writings, and notes from any reading Will had to do (his mentor gave him a book on the history of pizza), sits with Will and they spend time putting a Power Point Presentation together. What they will also do is have him type his Power Point Presentation in his communication device so he can use that on presentation day to 'verbalize' his report (of course they will practice that as much as possible). He needs to do his presentation on his own, as much as possible, to the judges (they are volunteers from the community who do not know him). We will also try to make one of the pizzas again for presentation day so they judges can taste it (his mentor will do it if Will cannot get with him). It should be an interesting time for Will, as for all the others, as they make their projects known to adults. The judges can ask questions and the students can have some help in answering if they can't do it on their own.
I have been a senior project judge for the last 3 years and love it. I have not done any of the special needs students tho. As much as the 'regular students' anguish over them - I do feel bad for some who have a major physical reaction to presenting in front of people - I think our students just do it. I have not heard of anyone reacting in a physical manner (getting sick) over it; I do not think that they are hard-wired like that. It is just something else they have to do.
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.
*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 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.
Vocational Assessment/Transition - Pt 1:
Presenters from the local Transition Centers helped explain one big piece for our kids in terms of moving on to their next placement/job/career: 'vocational assessment'. The information is included in the IEP and helps form goals. (The following information is taken from a hand-out given during this session.) This is part of transition which they describe as a coordinated set of activities that is designed within an outcome oriented process which promotes movement from school to post school activities. During the transition assessment data is collected on the student's strengths, preferences, and interests relating to their post school goals. This is 'person-centered planning' where through structured exercises focused on the person's strengths and preferences, a snapshot of the person and possibilities for the future are created. (Stillington, Neubert, Begun, Lombard and Leconte, 2007)
So why do transition assessment? IDEA 2004, which ensures services to children with disabilities, requires that student's post-secondary goals be based on age-appropriate assessments related to training, education, employment, and independent living skills. As said before, the assessment identifies a level of career development; identifies the student's needs, preferences, interests and abilities in relation to their post-secondary goals and their self-determination skills to reach their goals. It helps determine an appropriate focus of study and potential placement. Also it identifies accommodations, supports, services and inter-agency links needed.
Students should be able to answer these questions through this process: 'where am I now?', 'where do I want to go?', 'what do I need to get there?', 'how will I be supported to achieve my goals?'. The post-school activities that they are looking at include post-secondary education, vocational education, integrated and supported employment, continuing and adult education, adult services, independent living, and community participation. So as you look at all these components, the assessment will help bring to light life roles and the necessary supports for vocation or career development. One thing to keep in mind though is "assessment is predictive not diagnostic".
A quote I found by John Ruskin, poet: 'the true nature of education is not only to make the young learned, but to make them love learning, not only to make them industrious but to make them love industry, not only to make them virtuous, but to make them love virtue, not only to make them just but to make them hunger and thirst after justice'.
There is more to this including the 3 levels and different types of assessments so keep posted!!
Transition - Pt 2:
Today I went to Probate Court for my first yearly guardianship accountability for Will. We had paperwork given to us from our attorney asking for Will's financial assets, medical condition, and educational information. After the attorney reviewed it, the office was able to set a date for our 'appearance'. So I met our attorney at court, we waited to be called up to see the judge and it was all over in a matter of 5-7 minutes. He just looked over everything (there was not much to begin with anyway), our attorney mentioned a few items, the judge said everything was in order and then we left. Not painful at all!! We have to do this every year so we have to make sure we keep good records of any financial changes including additions or withdrawals to his account (keeping receipts).
Anyway, while I was waiting, I was able to start reading 'Here's to Your Students Future! A Parent's Guide to Transition Planning' 2009. Probably for us, the next thing to start considering is work. According to the book, "people with disabilities have several options for working: a job in the community, supported employment (a job in the community with supports), and segregated options (such as workshops)". The first choice is pretty self-explanatory. Supported employment means that a job would have support either from an employment training specialist, job coach or vocational instructor. Most times they say this support is phased out over time with support now coming from co-workers, supervisors, accommodations or other changes in routine. Segregated/sheltered options are those where only people with disabilities work usually doing some type of piecework.
I am still not sure where Willie fits into all of this. Although he is great on the computer - searching the web (he was the first in our home to video stream years ago when it first started), setting up DVD's on the computer (and DVD player), printing off any site, when he sits there he always views the same thing, over and over. We have tried to get him to copy lists (thinking he could do some type of data entry) but all of a sudden he 'forgets' where the keys are. When he types on his own, he zips through what he wants to type, self-corrects, and hardly looks at the keys. He could probably do some type of maintenance work, since some of his chores include vacuuming, loading and unloading the dishwasher, emptying the wastebaskets and helping to sort the dirty clothes, though he is not happy about doing any of those (pretty typical for any guy). So now I have to go and visit several vocational agencies in the area and get an idea of what programs they offer and where he might fit in.
Vocational assessments start in school around the age of 14 but nothing has emerged strong for Willie. I was at a workshop awhile back and heard about >PAL: AN ADVOCACY ORGANIZATION FOR FAMILIES AND PEOPLE WITH DISABILITIES. PAL IS COMMITTED TO SUPPORTING FAMILIES, INDIVIDUALS WITH DISABILITIES AND THEIR NETWORK OF FRIENDS IN THEIR EFFORT TO ACHIEVE THEIR OWN PERSONAL DREAMS AND TO ASSUME A SOCIAL ROLE OF RESPECT AND DIGNITY AS VALUED MEMBERS OF THEIR COMMUNITIES.
I have to go back over notes to make sure but IF (big IF) I am not mistaken this group sits with the family and young man or woman and discusses strengths to help decide what road to follow. If this is the same, they were able to help a few young people do jobs that best fit their personalities and likes, even starting a small business out of their house. I will have more to follow.
If you are going to work with me,
you have to listen to me.
And you just can't listen with
Because it will go to your head
You have to listen with your
If you listen slow, with your whole
self, some of what I say will enter
by Christine Meyer
Transition - Pt 3:
As I doing more preparation, and looking at all the papers and booklets I have accumulated regarding transition, I came across a magazine, called Autism Advocate, given to me by a neighbor. It is dated March 2007. The reading, though some of the statistics are probably not the same, is still pertinent today.
There was one particular article called "Moving Into the World of Employment" written by Cathy Pratt, the Director of the Indiana Resource Center for Autism & ASA Board Chair. It basically talks about what employers/service providers really need to know when working with autistic adults. There are 10 points that she makes and expands upon which gives employers insight into how to best work with autistic employees and make the experience a win-win situation, a situation that best lets the employees shine and can help the company environment shine. The following is a short-order version of the article.
* Have a through understanding of ASD (autism spectrum disorder), the spectrum & diagnosis is a must. Service providers need to understand the complex nature of ASD and know that there are no generalized services that universally apply. ASD is a neurological disorder, not emotional or a mental illness.
* People with ASD require a creative and careful assessment process. Many ASD people have unique skills not obvious during the transition process. Personal skills are shown through careful observation, interviews with those who know the person, and a longitudinal assessment process.
* Think outside the box. Services and vocational programs are usually offered in terms of what is available, instead of what the person needs or is interested in doing. Also it should not be assumed that the person with ASD who has communication and socialization issues, has the same type of challenges in other areas. Assume the opposite, most other areas are better developed.
* Be aware of sensory processing challenges. Dealing with sight and sound can be different than that of their co-workers. Accommodations should be made so coping skills can develop. There should be opportunities to leave a stressful environment from time-to-time, without consequence.
* Build on strength. Address a person's strengths and interests rather than focusing on what the person cannot do.
* Prepare, Prepare, Prepare. Make sure the person understands what will happen -- during the assessment, at the work-site, and during work-training. Best sometimes to use visual supports.
* Communication should not be all talk: fewer words used often. Some ASD people use many words but in actuality, have a limited receptive language. Best to use more written and concrete communication and directions, like developing schedules and visual sequences of tasks and information about the 'rules' of work. Also sarcasm, innuendos, and double meanings are lost so directions can be confusing or meaningless if these are used.
* Carefully consider the environment & predictability of the job. The worst is the workshop-type
*Social expectations require instruction. Prepare the person for the rules of the job, teach expectation, rehearse how to greet people, ask for help, engage in small tasks, and accept or give complements.
* Systems must work together (delays can be deadly). Local agencies must work with schools to identify students early, work with the school team to get to know the student. Then they must identify adult services and potential employments.
As Cathy sums it up: "As your son or daughter moves from the public school system, which has clear legislative entitlements, to the adult world of eligibility, it is important to have a vision for your child. Examine the possibilities."
In order to access the entire article, you may need to register as a member of the Autism Society. It is FREE and offers a lot of valuable information.
You can find the whole article here.
Future Work Possibilities:
Special Education Experiences.
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.
I was introduced to another site, PRBuzz, and came across a post regarding parents in Mississippi looking to raise money for their son, Zachery, who is autistic. The money is for a communication device that they want him to have and say that it is too expensive for the school system. The article tells of their attempt to raise money using Indiegogo.
I am trying to get a hold of ANYONE at PRbuzz -- the family has 2 options besides this fundraiser. #1 - the family MUST continue to 'nudge' the school system. The family should NOT concern themselves as to how much this will cost the schools -- the schools should be providing ALL necessary supplies to further Zachery's education and life skills plan. It MUST be in his IEP (Individualized Education Plan) to have one!!! If you take a look at our story with Willie, you'll see how the school system finally purchased one for him. #2 -- there is another less expensive device for Zachery to try. Check into the iPad2. It is less expensive and there is an app, 'Assisstive Chat' based on the app 'Proloquo2go'. A few of Will's classmates are using this and I will be talking to his teachers to see if they feel it would be a good one to use instead of the one he has.
This is a 'Light Writer' we received through a local company called 'TechAccess'. It has worked great but is heavy. Willie was able to put his Senior Project Presentation on it and it verbalized his PowerPoint. You can actually use it to write a book.
The iPad 2 seems to be a good replacement device. Even TechAccess is iPad2 workshops. So this seems to be the next step. We were concerned about his dropping it or damaging it - we spoke to someone at BEST BUY (not that we are recommending one place over another, we just happened to be there). The Apple sales person showed us a case designed for the military that will take just about any kind of abuse you can think of.
So if anyone can get this information to the appropriate people, please do so. Maybe it can help the family.
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 Kids
Robots Teach Autistic Kids to Interact
Robot Helps Autistic Kids
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4 Signs of Caregiving Stress Overload
ElderCarelink email posts 4 signs that should not be overlooked by you, the caregiver, or a close family member or friend. They report that even though the immediate caregiver may not be helping in direct care, the mind is never far from the needs of the older person, thinking about meals, falling, medications. Take the opinion of a family member or friend if they are telling you that you are stressed. Four signs: you skip your own physicals; you isolate yourself from others; you eat and/or drink too much for good health; you are short tempered with the elder, your spouse or your children. If any or all of these sound familiar, take a break no matter how short in order to recharge. For more information on caregiver stress see ElderCarelink
You can check out my ranting and stream of consciousness writing about looking at adult service providers with Will.
A Caregiver's Poem
I was looking through a 'Caregiver's Blog: Senior Care Support' and came across a poem that was shared by a writer, Dana, from the blog. The poem was written by Becky Netherland and Dana's grandmother shared it with her. I thought it was great and there is not much to say about it - just read!!! Enjoy!!
(picture from Caregivers Blog)
I’ve traveled paths you’ve yet to walk
Learned lessons old and new
And now this wisdom of my life
I’m blessed to share with you
Let kindness spread like sunshine
Embrace those who are sad
Respect their dignity, give them joy
And leave them feeling glad
Forgive those who might hurt you
And though you have your pride
Listen closely to their viewpoint
Try to see the other side
Walk softly when you’re angry
Try not to take offense
Invoke your sense of humor
Laughter’s power is immense!
Express what you are feeling
Your beliefs you should uphold
Don’t shy away from what is right
Be courageous and be bold
Keep hope right in your pocket
It will guide you day by day
Take it out when it is needed
When it’s near, you’ll find a way
Remember friends and family
Of which you are a precious part
Love deeply and love truly
Give freely from your heart
The world is far from perfect
There’s conflict and there’s strife
But you still can make a difference
By how you live your life
And so I’m very blessed to know
The wonders you will do
Because you are my granddaughter
And I believe in you.
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