Be Your Child’s Voice–And Be Heard

http://ireport.cnn.com/docs/DOC-769273

Dear Parents,

Today I learned of a remarkable ten-year old boy with autism who is speaking out about it and making a great effort to help people know about autism and the problems around it.  He is Sam.  Please go to http://ireport.cnn.com/docs/DOC-769273 and see a sample of what Sam does that will indeed make a difference in how people in his area view autism.

Then think to yourself, if this is a ten-year old child who is able to have this kind of impact, what kind of impact might I have as an adult?  If I were part of a group of people who create awareness around our children?

This is a reality:  each of us can do what Sam does.  It is a matter of making the time and the appointments to visit organizations and important people who can influence what happens in our lives and our children’s lives.  We should all be Sam for our children and their disabilities.  Imagine what a different world this would be if so many of us were out there doing as Sam does, giving information and asking the tough questions–what are we doing for these children and their families, and why aren’t we doing more?  As Autism appears to be becoming equal in incidence to learning disabilities, we certainly cannot afford to close our eyes to any avenue or option that helps our children become more independent and more functional.

We are the parents and we may be the only voice our child has.  Sam is not silent.  We should not be silent either.

Here’s how to speak out.

Talk to school classes.  Don’t be afraid of kids.  They’re kids–and they’re eager to learn.  Difference intrigues them.  Present your what your child has in common with them and the differences in his needs in a reasonable way and they will be less likely to bully or pick on your child and more likely to make him their friend. Their teachers will be educated at the same time.  Go to MOM – Not Otherwise Specified and see how one mom has presented her son’s differences to his class.

Talk to community leaders.  Our elected officials often determine how and where and what community services will be.  It’s important to let them know what community services are truly needed.  If you think a place for children in wheelchairs to play in a park is important and needed by enough families, speak up.  If you think schools need more funding for special education, speak up.  If you know there is a need for an organization that provides special services in your community, speak up and tell your leaders who needs the services and who might provide them–and that you only need the place and funding.

Talk to legislators.  Legislators on budget committees control where the money goes.  Get your legislators to propose legislation and projects/programs and meet the needs of families with needs like your own.  Get to know legislators in important cabinet positions and who control money–let them get to know your children through letters, e-mail messages and photos, introductions at the legislators’ town hall meetings and political events.  Make your face and voice familiar to them so they know there is a need for someone THEY know.

Increase the wallop of the above.  Never go alone–make sure you’re always introducing someone new to these people so they know you’re not just a voice in the wilderness but a voice with a group or mass of people who also need what you’re requesting.  NUMBERS COUNT.

Make your presence and activities known on the Internet.  Everyone knows somebody who is internet savvy who can help us do the social media thing that makes what we do so much more powerful through Twitter, Facebook, MySpace, etc.  Please don’t think you can’t do this.  I’m a rookie and a techno-boob, and I am going to be learning right beside you.  Believe me, if I can do this, a 5-year old can do this.  USE the people you know who have this talent.  Someone you know will be immensely pleased to help you and won’t feel it’s an imposition at all.  Find that person and feed him/her all the information needed to make it work.

Shy?  Think you can’t speak publicly or to strangers?  Write.  Get on blogs, get into chats where you’re anonymous but your information sharing is powerful.  Do a telephone radio interview for a talk show where you’d basically just answer questions that YOU’ve written in advance for the show host to ask you.  The key to confidence during these events is this:  People are out there who NEED what you have to share and they won’t get it if you won’t share.  Your voice will improve some family’s life and some child’s entire future.  How can you remain silent when you can be so powerful?

Your child is not the only one who has his disability, nor his symptoms, nor the possibility of a better future if we speak up.  Let that be a fire within you, that you help your child and your family and hundreds more by giving voice to what so many people need to hear.

Then use this blog to tell us what you’re doing so others will be inspired to do the same!

Free College Texts, Instruction

Hello,Parents!

MAC 1105: College Algebra
Marcus McWaters
These videos are being used as instructional aides by Professor Ignacio Bello, of the University of South Florida Mathematics Department, College of Arts & Sciences, to help students in the College Algebra (MAC 1105) classes.
Introduction
Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5

The above information comes from http://scholarcommons.usf.edu/oa_textbooks/, a website that is a step forward in how one university considers its students and their financial status (poor folks). University of South Florida (USF) participates in the Bepress Digital Commons, an online repository of research papers, (dissertations, theses), books, and other publications by the students and faculty at universities around the nation (http://digitalcommons.bepress.com/online-books/). A quick browsing session through the theses and dissertations of masters and doctoral students at Florida International University shows us a wide variety of topics are covered, some in depth, some a bit cursory, but all interesting and informative (as educational publications are expected to be).

USF has a collection that is much the same, but it has this textbook page which allows students to access texts free of charge. Because the site is open to the public, you and I, and your child or student who has trouble with algebra, can go to a page such as this and find help–text or as in this case, instructional videos. If it helps college students, it can help high school students–remember that math is math is math no matter how old the student is. This page has a collection of videos that cover the main concepts of college algebra. The presentations are clear, simple, free of distractions, and the replay function can be used as often as a student requires.

Go visit, dig around. “Go to college” as you devour college-level materials. Believe it or not, it can actually be fun.

Here’s what this means for your child. Because this kind of instructional help is one-on-one, it is direct, non-distracting, and gives us ways to help a child discover how he learns and how to work with teaching styles that don’t match his learning style. Because the information in these videos is very simple and clear, and because it is endlessly repeatable, your child can experiment with notetaking, with learning strategies, with how he receives the information and “gets” it at last. Your child, while he may have trouble at school, can be very proud of the fact that he can extract information and learn from these websites. It is proof that he is NOT stupid, that he CAN learn, and yes, he IS smart! That alone will help inspire his efforts at his everyday learning. Of course, if you do dig around in here and discover help for several parts and pieces of his studies, his grades will go up. And that would be GREAT!

Isn’t This Supposed To Be HEAVEN?

Today we’re going to use humor to vent our frustrations.  I wrote this a few years ago and it has been posted on some special education and advocacy websites.  Now I’m putting it here to share with you.  Enjoy!

Isn’t This Supposed To Be HEAVEN?

by Michele Williams

Copyright 2011, All Rights Reserved

A special education administrator died and went to heaven to see about
getting in. St. Peter said, “Well, your mom and dad are here saying you
should qualify, but I don’t know. You see, we have to conduct our own
evaluations. It will take 6 – 9 months, or maybe two years. We’ll let you
know. Would you sign this consent for evaluation right here, please.” So the
man took a seat on a cloud and waited none too patiently.

A year later, St. Peter comes back to the man and says, “Sorry, but that
Consent form wasn’t the right one. Would you sign here please.” A year
later, the man is called in for a conference to talk about the evaluation. A
psychologist angel said, “Well, we noticed that you were extremely impatient
while waiting, drummed your fingers a lot, seemed not to pay much attention
to instructions, and you let us have you sign the wrong form at the get-go.
We suspect you probably have attention deficit disorder. We don’t do
behavior modification here, but we do have a detention room where our
offenders do time before being sent to Hell if they can’t figure “it” out.
We noticed you had trouble learning how to sit on our clouds, so we suspect
you probably need some physical and occupational therapy. You’ve been rude
and deceitful with parents of disabled children on earth, but with extensive
counseling, you can probably overcome that. You’ve been playing crony games
with public funding and key positions, and with personality readjustment
therapy, you can probably overcome that. You’ll have to work hard, try
harder than you’ve ever tried before. If you can make sufficient adjustments
with our accommodations, you might be awarded a diploma entitling you to
entry into heaven. It could take as long as 12 years, but we are
optimistic.”

The personality readjustment angel worked diligently with the man and began
to see progress. Still, when the man was frustrated, he acted out and was
not exactly heavenly-appropriate in some of his antics and verbal
expressions. The personality readjustment angel said to his parents, “I’m
sorry, but if he doesn’t make more progress soon, he won’t make it. ”

“He needs more counseling, some training sessions, perhaps some
role-playing, social skills training,” his parents said.

“Sorry,” the angel said. “There are far too many other angel candidates and
I’m overbooked as it is.”

The angel gave no clues as to what procedures heaven might have for
increasing the administrator’s personality readjustment services, and the
parents were sure that since this was heaven, they would have been told
everything they needed to know and all necessary help would be given. So
they rested on faith.

St. Peter assigned the administrator a physical therapist who worked with the

man to teach him to sit properly on clouds and a flight instruction angel
to teach him how to fly. The administrator got the hang of sitting on clouds
pretty well, but he had a ton of trouble learning to fly. “Look,” he kept
protesting, “This flying bit isn’t easy. I’ve got to learn to trust not
having ground beneath my feet. I’ve got to keep looking at the horizon
instead of furniture around me. I’ve got to keep from banging into other
angels. My flight instruction angel only shows up 80% of the time. I need
more help.”

“Sorry,” St. Peter said. “You’re not trying. If you speak up in your own
behalf, you’re showing a basic lack of faith and trust, and it has tinges of
disrespect for our authority. We can’t have that around here. We’ll have to
give you detention you if you keep complaining.”

The administrator shut up. But the next day, he took off from his cloud with
his flight instruction angel’s full approval and promptly plunged toward
Hell at full speed, flapping all the way.

“I have to say something,” he screamed. “I told you I needed more help, and
it would help if I had both wings!”

“Sorry,” his flight instruction angel shouted downward. “We don’t have the
funding for that.”

Summer and Summer School (or not)

Well, you’ve probably noticed that the last post was the last post for a while. Maybe you fell asleep waiting for the next one. Well, you’ve had time for a nice nap. Time to wake up–and the kids are out of school for the summer, so you can’t sleep in now, anyway! Summer. It just isn’t the same for many children with disabilities, especially those with learning disabilities who forget so much during summer that they spend months of the new school year re-learning rather than keeping pace with peers. What should summer be for those children?

As a parent of two children with disabilities, I had to decide the summer school issue for one of them, and until he was 16, he never had a summer at home. He didn’t know what a lazy summer week was like because he was always chasing the learning objectives and goals, even if we were on vacation trips. We just folded everything educational about trips (the only kind we ever did because it’s what we love) into what he was learning at school and off we went. At 16 he had a stomach ulcer due to the stress of learning and we felt he needed a break, so he got his first summer off. He refused to go to summer school again. He didn’t get the regular high school diploma, and he’ll have to get the GED if he wants to get more education, but he can do it if he chooses. He knows what he has to do to learn. That was a major point of all the extra time spent in school…just for him to know what it takes and how he has to do it so he can do it on demand.

Too many parents don’t want to fight with schools to get extended school year on the IEPs because budgets in school districts are so tight that the fight has gotten worse than it ever was. Summer school, if it isn’t all regular classes, might be an option. At the same time, ADA is clearer than ever on that point, and using it and Section 504 in addition to IDEA will make your struggle easier. If a child can’t learn in the fall because he didn’t retain enough over summer, he needs summer school or the extended school year based on implementation of his IEP, not based on whatever programming the district wants to provide for every student this year.

If your child has already shown signs of forgetting too much, it is not too late to call for an IEP meeting to place your child in an extended year program. It might not happen before this summer is over, but when the longer school breaks occur, such as at Christmas and between semesters, your child will be in school retaining and learning rather than forgetting, and for next summer, there will be no large gaps forming in his memory bank. Start that process now if you believe your child needs the extended school year on his IEP.

What can you do in the meantime? You’re using a computer to read this blog, and your child can use the computer to access summer learning (and retention-boosting) activities. The internet is full of games based on math and other learning opportunities, and you can find many of them by searching for “math games, social studies games, spelling games, etc. Electronic stores such as Best Buy, Tiger Direct carry educational software you can use to boost memory and retention during the summer.

Here are some links you may find useful to maintain learning levels during this summer.

Apples 4 the Teacher http://www.apples4theteacher.com
Covers all core content subjects, K-12

SoftSchools.com
http://www.softschools.com/
covers K-12, incudes geometry, French, Spanish

many subjects for k-12
http://www.mrnussbaum.com/
includes games that respond to student answers to create new learning opportunities
Social Studies
http://www.socialstudiesforkids.com/subjects/funandgames.htm
http://classroom.jc-schools.net/basic/socst.html

Gameaquarium.com
http://www.gamequarium.com/languagearts.htm K-6 with resources for teachers, parents

Language Arts
K-8, great resource
http://games.pppst.com/languagearts.html

Language arts, middle & high school with great links to resources
http://www.internet4classrooms.com/lang_mid.htm

Math
Vedic math, game-based, ancient math based on different methods more easily learned and remembered
http://www.mathmonkey.com

CoolMath4Kids.com
Pure games and learning
http://www.coolmath4kids.com/math_puzzles/index.html

Social Studies
Multiple disciplines
http://www.socialstudiesforkids.com/

You get the idea. You search for the topic and grade level you want and poof! the internet finds it and delivers it to your screen for your child’s entertainment and learning.

Now, be fair and give your child a turn!

The Busy-ness That Is Life

We have doctors’ visits, therapies, homework, jobs, cars that need washing, floors that need mopping, vacuuming, clothes that won’t iron themselves, shopping, cooking, and children who want more of our time than the daily chores of life will allow.  My children are grown and I still remember the look on their faces when the wanted my time and I couldn’t give it right then.  It’s hard to say no when they are young.  Later, it is they who will say no to us when we need their time, but that’s another story (or is it?)

How can we have more time with our children?  INCLUDE them in what we do.  Too many parents plop the kids in front of the TV and then fix dinner by themselves.  It’s American–so what’s wrong with it?  It excludes your child from all the learning and life skills that helping with dinner might provide and denies him/her the camaraderie of a family that works together, and ultimately, delays/denies development of teamwork skills.  It’s seemingly everywhere in the fabric of American life, and it shouldn’t be that way.

Children learn by imitation, and if we push them away from things we do that they could benefit from learning, we hurt them more in the long run than we do today.  We need to include them when they first ask to help–age 3, 4, 5–and recognize their efforts with praise.  We need to be patient with the mistakes they must make in order to learn, and we need to allow the time for their growth at our side.

We should not do their homework for them, but we must see that it is possible and that they have everything needed for them to do it.  If we do our household accounts, read the paper or books, journals, or magazines while they do homework, our stillness while they learn impresses upon them that we value their learning time and will do nothing to distract them from it.  By these two strategies, children learn that they are valued and capable, two things that help prevent future drug abuse, truancy, gang activity, and many irresponsible behaviors.

As parents, we must mentor our children into adulthood.  We foster that growth by keeping them at our side for everything possible so they learn to imitate our adult behaviors.  The time our children crave with us is there–we just need to recognize the ways our adult activities nurture our greatest imitators and bend ourselves a little to meet their needs.

This is especially crucial for children with learning difficulties.  They get slapped in the head and heart every day with things they can’t do or have great difficulty doing, and the grades on their papers are not nurturing their self-esteem or sense of competence.  The home, where you include them and help them develop homemaking and self-care capabilities, is a haven where they are respected for what they CAN do and for what they ARE learning.  As they become competent, they develop what psychiatrists call “islands of competence.”  These islands of competence are lifelines for children with disabilities.

Yes, we are short on time, and it feels like we don’t have time to wait for our child to learn to peel potatoes.  But we MUST, and we will soon find that if we give the time for them to learn, we can later give them the chore as their contribution to family life–and then we don’t have to peel potatoes at all, a 100% saving of our time for that chore.  If what your child gets out of it doesn’t stir you to be patient and give time for learning beside you, think what you’re going to get out of it, too.

Enough said.  Here, you peel this potato.

When Life Changes Bite

This last month has been really, really hard. First, somebody tried to make a right turn from the left turn lane and took part of the front of my car with her. I hadn’t had any other car accidents in over 20 years, but about 3 weeks later, I totalled my car. It doesn’t take much to total a 10-year old car, and my back doesn’t take much to flare up nastily. It flared with the first accident and has remained nasty ever since. My car was not replaced before my mother totalled her car. Before that was over, my younger son and I reached a decision to place him in an ALF–assisted living facility. We had to move fast to find a car for me, find a car for my mother, and find a place for my son that was appropriate for a young man 26 years old. Geriatrics aren’t a good fit for youth in ALFs. But there seems to be only one in our area–and this is Miami, FL, not a small place.

Crush, rush, tension, pressure, worry, and overwhelming sadness that my son’s life had come to this point. Hit by a car in July when his walking had already deteriorated to where he should have been using a walker, he has not recovered his previous walking ability, and the constant head-shaking is worse than ever. Now his hands have begun to shake, too. Neurologists don’t know what his diagnosis might be nor what his prognosis might be. All I know is that it keeps getting worse, not better. And now the sweet young man who was once thought gifted in first grade is unable to read regular print, has difficulty with memory, can hardly walk or keep his balance, and has ulcer symptoms due to life’s stress. It’s impossible for me to care for him and do a job, and it has come to this.

Institutionalization has its place, but it is not a joyous decision. This decision came amid extreme pressures, but it would hardly have been easier without those factors. Sometimes we just have to do something we don’t like and live with it. My son can’t like being the one “placed” there…and that gives me perspective on how petty my feelings about it seem in contrast. It would be easy for both of us to be depressed, yet we don’t seem to be. We are both looking at how to find the good in it. He gets to make new friends, discover a new neighborhood, find new foods he likes to eat, and learn new games to play with residents. I still get to drive a lot, but it knocked 10 minutes of the trip each way–YAY! And the best part–he lived alone and couldn’t take care of himself before–and now he has company and help.

Nobody knows what their future brings, but we do know one thing. Happiness is a choice. We can choose to find the good in our lives and be prepared to look for it pretty hard, making sure we haven’t overlooked something somewhere. There’s no value in picking at a sore so it doesn’t heal, and there’s no value in feeling sorry for oneself. So we’re picking ourselves up, dusting ourselves off (ah-choo!) and looking for where the sunshine goes. Healthy minds help make healthy bodies, and help sick bodies get well or at least not get worse. It becomes our daily routine to find joy, find delight, find happiness. We never fail to find something.

That is the challenge to parents of children with disabilities. Life deals us a few kicks in the teeth, and boot on the butt, a whack in the head. We have to keep standing and keep things moving to care for our families. There are days (weeks, months, years!) when it may seem like we can’t do it, yet there always comes tomorrow and we are still here. Even if we gave up on ourselves, we are still here. If we are still here, we can try again. We have courage, strength, and determination if we start again (once or often, it’s all the same. Just start again. Never stay “down”!)  If others are watching us, we may be inspiration for them.  No matter what happens, we are still here.

It is one of the great secrets of life that even those who gave up are still here. It’s up to us to develop the internal fortitude and grit to say, “So it’s time to begin again. Or continue. Only don’t stay like this!”

To all you parents whose challenges are so fierce that you feel like giving up but find yourselves still in the battle every day, no matter what, you have my undying respect and best wishes. We’re always fighting for something–it’s never calmly boring, this living with disabilities. Even that is a blessing!

There. I’ve started it. Recovery from life’s bites and blows begins with a first step toward re-discovering one’s happiness. It’s your turn. Where is your happiness and what delights can you gather to make this day better than it was?

Special Skill–Could You Do This?

Go to http://www.stumbleupon.com/su/2MBBxU and watch how an autistic man uses his skill in art to show that he has a nearly perfect photographic memory.  It’s an amazing piece about a unique person’s ability to capture the world around him on paper.

Top this off with a few minutes of meditation about your own special skills/abilities.  If your smile is contagious (or your yawn), you can have a ripple effect upon your world.  Go ahead, try it!  And on that note, think how you and what you must deal with might be inspiring to others…because you just KNOW you inspire somebody nearly every day.  Think about how it happens and use that awareness to help you make your way.