ABLE Accounts for Americans with Disabilities

 

Passing this on from Autism Speaks.  Please urge congress to finally act!

Congress has returned to Washington and now is to the time for them to finish the job with ABLE! Urge your Members of Congress to pass the bill this month!

ABLE would allow tax-free savings accounts for Americans with disabilities. ABLE accounts would give you a place to deposit savings for disability-related expenses without worrying about losing Social Security and Medicaid benefits. Under current law, those entitlements are jeopardized if savings exceed $2,000.

Three-quarters of the U.S. Senate and House of Representatives have signed on as co-sponsors. Let your Members of Congress know your 1 in 68 with autism can't wait for ABLE!

 

 

Here is How YOU Can Help:


1) CALL YOUR MEMBERS OF CONGRESS!
You can contact them through our Autism Champions site by:
Clicking HERE, or
Calling: 855-991-8887 (Tollfree)
You will be connected directly to your Senators' and House Member's office!

2) SEND AN EMAIL!
We have messages prepared and addressed for you to send into Congress. You will be matched up with your state's two Senators and your U.S. House district. Take action HERE. It only takes a minute!

3) SPREAD THE WORD
Post this on Facebook urging your family & friends to join you in demanding action on ABLE. Be sure to include the link:

"I just emailed my Members of Congress to vote for the ABLE Act this November. ABLE would allow tax-free savings accounts for people with disabilities so that they can meet their ongoing expenses. Please follow the link below to email YOUR Members of Congress to vote YES, then share this on your page! Thanks!" 

Link to: http://bit.ly/ABLEYes

 

We've waited eight years for Congress to pass ABLE! Call and email them to let them know you want ABLE done this November!
 
Shelley Hendrix
National Director, Grassroots Development
Autism Speaks

   

 Autism Votes is an initiative of Autism Speaks. 
 

Small Spaces

So in our world where food is bigger, houses are bigger, parties are bigger, ....maybe small isn't so bad either.  As you know I have 4 boys. They share bedrooms, but lately they have been driving each other crazy (I'm sure it's only my kids who do that!). So we got creative and tried to bring new life to some unused spaces in our house, staying in line with the whole "eco homes/small homes" movement.  Not that I had "big spaces" to offer them anyway! Here's what we did: One moved in to a walk in closet that has a window.  It's a little reminiscent of Harry Potter's "cupboard under the stairs", but he LOVES it! That room already had some shelves on the wall which we left.  I added a basket for dirty clothes and he set up a locker stacker for a small table.  I re-purposed a stack of plastic drawers outside the "room" for clothes. For another we converted an unused foyer by adding some shelves to form a 1/2 wall (The shelves were previously located in the closet, but took up too much space to stay there).  Then we hung beads from the ceiling for privacy and added a small rug. For the last space, we pitched a tent! We moved in some bookshelves and a stacking set of drawers from the playroom. The tent was Mike's idea. We've pitched a tent inside before, but only for an "indoor camp out."  It's a great way to portion off a larger space without putting up walls. We moved mattresses, but not bed frames into each space.  I insisted on books (of course!).  The boys had to declutter and could only bring a few prized possessions with them, not enough space for more, oh well! - nice way to get things cleaned out! I bought 2 small rugs from overstock.com to add an element of coziness to the tent and the foyer areas.  (The closet already had a carpet.) Voila! 3 new bedrooms.  I actually have an empty "regular" bedroom now.  Maybe I'll reimagine that space next! I don't know how long it will last, this was supposed to be a summer project, but so far the kids love it, so why not?  It's fun to think about things like "bedrooms" in different ways.  Give it a try, it's good to mix things up every once in awhile!

Summer! Practice Ideas for at home Speech Therapy

Okay so summer is here and maybe you are taking a break from speech-therapy for awhile or maybe you are still coming to speech regularly.  Either way, don't mean stop practicing!

Here are some of my go to strategies and practice ideas for summer.

1. Read out loud. (I know I say this all the time.  It's one of the single best things you can do regardless of speech issues). Don't pick a super challenging text though, the focus is on getting the sounds, not on decoding the text.  Scan the page first with your child and find words that have your child's target sounds, then read the text.  If your child is too young to read, you read and have him or her repeat you. I call the "echo reading."  If it's too hard to get the sounds "right" in this context, pick out a few words on the page that contain the target sounds and practice just those words 3-5 times/word.

2. Search for practice videos on my "practice at home" link.  There are many videos for all levels and several different target sounds. There are also videos that demonstrate different strategies including strategies detailed here.

3. Refer back to old emails from me for practice ideas.  I usually try to send ideas home on a regular basis.

4. Play some version of an "I spy" (I search, I'm thinking of...., I remember...) guessing game.  This is great for the car.  Focus on target sounds while you play and change the opening phrase to reflect the target your child is working on.  For example, if your child is working on TH, use "I'm thinking of something ...." when giving clues.

5. Board games and card games can always be adapted for speech purposes.  Practice the target sound 3-5 times before each turn.  Use phrases like: "spin the spinner", "roll the dice", "shake, shake, and drop," "ready to go", "your turn", "I should go", "I choose to go", "I think I'll go", "This is my card", I'll play a ______", etc.

6. Give descriptions.  Tell 3 things about your day or pick an object and tell 3 things about the object.  Use your target sounds. Try making tally marks for each target sound while you are talking or take a chip (snack cracker, coin, etc) from a pile for each target sound you say during the activity.

7. Put up signs around the house and/or make a special book mark (remember I want you to read out loud!) to remind you to practice.  Put signs in the rooms and places you frequent and also on objects you use often (maybe on a backpack or a book you are reading).  Consider places like the family room, bedroom, bathroom, fridge, and car. 

8. Search online for pictures that have your target sounds or brainstorm a list of words.  Maybe you just practice the words 3 - 5 times each.  Maybe you use the words in a sentence.  Or, if you are more advanced, try putting the words together to create a silly story. 

9. Pick a specific time each day to practice or a specific location.  For example, practice every time you are in the car, walking up and down stairs, or riding in an elevator.  Or maybe it's a dinner time, bath time, book time at the end of the day, or "adult swim" time at the pool.  If you choose a regular time or location practicing will become a habit.

10. Make videos of yourself and listen back to the video.  How did you sound? Did you hear any mistakes? If so practice the words that were challenging. Where can you improve? Do you need to slow down? 

If your child is slipping, give me a call or send an email.  We can always work in brush up sessions during the summer as needed! Good luck and PLEASE practice.  Remember a little bit every day makes a big difference.  

Have a great summer!!!

 

My Escape from Prison - Autism Awareness

Recently I wrote about Jonathan's pal Mike, a boy with Autism in Jonathan's class.  Mike doesn't use spoken words to talk, instead he uses a letter communication board when conversing with others. Many would say he is non-verbal because he doesn't talk "out loud" or use verbally spoken words, but Mike has a very real and special voice.  Back in March, I read Mike's personal memoir (a class assignment) at the 5th grade "Coffee House" and was so moved by Mike's voice that I asked him if I could post it to my blog.  This is a story that brought me chills.  This essay is a rare and beautiful glimpse inside the mind of 5th grade student, a student who brings us his profound voice through his writing.  Please share the link with everyone you know.  Mike's voice is one that is rarely heard in our society and one that really needs to be shared.  Mike said he was willing to share "something so personal so that it might give a voice to those who do not have one yet.”

 

My Escape from Prison

By

Michael Keller

 

“Touch the bowl,” Sara said.  I knew what a bowl was.  The other things on the table were a cup and a ball.  But my mind could not translate the knowing of that into making my hand touch the bowl.  We had been working on this drill for weeks.  I was bored out of my mind.  I did not know how I would ever break free from this torment. 

In February 2012, I met Miss Soma.  That meeting changed my life in a way that I could never have imagined.

The way I felt before I met Miss Soma must be described as a prison of my thoughts without a door. The way I behaved was very hard for those around me because I could not do so many things. I could think, but no one knew, so everyone thought I was dumb. That set me off sometimes which just had the effect of making people think that I was uncontrollable.  Sometimes I would even scream like I was being tortured because not being able to communicate seemed like the torture of being in a prison camp with no hope of ever getting released.

Since I was two, I had been taught using Applied Behavior Analysis.  This way of teaching was so hard for me because it consisted of me choosing pictures or objects that matched the question asked.  If I got it wrong, I had to keep doing it until I got it right.  The thing was, though, that I always knew the right answer, I just couldn’t always make my hand touch the picture or object that I knew was right.  It was so sad to me that I could not communicate that I knew the right answer.  I wanted to run away but there was no place to run for a person who could not communicate enough to even buy a bus ticket or have enough motor coordination to hold up my thumb to hitch hike.

I was three years old when I realized that I could not talk like my younger sister.  I was wanting to express my thoughts so desperately but no words would come out when I tried.  It felt like I was fighting with my mouth and it would not move.  It was as if I was in a boxing match where my brain kept getting knocked out and the heavyweight never flinched despite the onslaught of blows from my brain. 

I loved my sister, but I wished with all my heart that it had taken her longer to talk so that we could have continued to both be without words, because then I would not have stood out as much to other people.  As it was, I felt like an animal in the zoo that everyone gawked at thinking the animal didn’t have feelings. 

My mom saw Miss Soma on 60 Minutes and talked to a friend at her high school reunion that had taken his daughter to see her.  My mom also ran across Miss Soma’s name on the internet when she was researching about treatments for nonverbal children.  My mom believes that if she hears about something three times, she is meant to follow through with it.  So my mom decided to make an appointment for me to go to Austin to meet Miss Soma.  My mom wanted to see if there was a way for me to communicate. This was important to her because she really wanted so much to know my thoughts.  What she didn’t realize was that I also longed to tell her my thoughts.  But when she made the appointment, she didn’t tell anyone, because she was worried that Miss Soma’s method wouldn’t work for me. 

My mom and I flew to Austin on February 20, 2012.  I was very nervous to meet Miss Soma and I think my mom was too.  The flight felt longer than all the years of the therapy combined because I had hope for the first time in my life and I was deathly afraid it would be dashed. 

We spent the night in a Residence Inn and waited for the morning.  I did not sleep at all – I kept tossing and turning trying to imagine a world in which I could communicate.  It would be a world filled with conversation and understanding.  And I would be included in the beautiful world where friendships grow like flowers in a garden when the spring rains fall. 

The next morning was a bright and sunny Tuesday.  In the daylight, my dreams from the previous night seemed ridiculous -- like the dreams of a mad person. 

We drove over to Miss Soma’s office.  I was surprised that it was such a small inconspicuous brown brick building. The parking lot only held four cars.  We parked our rental car, got out and walked down the tiny sidewalk to the front door.  How could such a nondescript building hold any kind of miracle for me?  I almost wanted to run because I didn’t want to endure my mom’s tears of disappointment that would fill an ocean. 

We went in and I saw an old green couch and a small room with a video recorder.  My first thought was that this was a cruel joke in which the villain that tricked us would laugh hysterically at our being so naïve that this place would help me to talk.

The next moment, a small Indian woman wearing a sari and a denim shirt greeted us.  The shirt had “HALO” written on it.  “HALO” stands for “Helping Autism through Learning and Outreach”.  Miss Soma was this woman.  She took me and my mom into the small room.  She didn’t seem friendly, just very serious.  I would later learn that this was her life’s work to help children like me.

Then the most amazing thing happened in that small room. I told Miss Soma that my favorite color was fire orange. It was the first time that I had ever told anyone anything about me. I was really free of the prison and I was determined to get all my thoughts spoken from then on because I had nine years to make up.

Miss Soma used letter stencils that I had to touch to spell out words.  This was hard at first because I had to use my hands which I wasn’t used to using this way.  She started with stencils that were A to I on one board, J to R on the next board and S to Z on the third board.  I had to first tell her which stencil board I wanted and then push the pencil through the right letter.  It was such a laborious process, but I could see that this was my route to escape my prison of unspoken thoughts.  My mom was amazed that I knew the order of the alphabet and knew how to spell so well.

Then I progressed with Miss Soma to using a stencil with all the letters but still using the pencil.  Finally, I was ready to use the letter board and my finger pointing to the letters instead of a pencil.  I told my mom that I missed my family and I couldn’t wait to go see them again.  This was the best moment of the escape, like the joy of a prisoner emerging from Alcatraz.

Now it is easier to type with my letter board.  My family is so excited to know my thoughts and feelings.  But every new person that wants to talk to me with the letter board has to go through a process of me getting used to their rhythm.  I have to concentrate with all the strength of Hercules to learn a new rhythm.  For instance, it took my mom four months to talk to me after Miss Soma.  Now it usually takes only a couple of weeks to learn with a new person, except that is has taken much longer with Mrs. Mohammad.

Working with Miss Soma freed me of the torment of knowing things but not being able to show them.  My life has become so amazingly rich.  I can now learn to talk to anyone. My experience shows that just because someone can't speak, it doesn't mean that they can't think like others.  It just takes extreme patience sometimes to reach your goals.

After I could talk, my mom asked me how long had I been able to talk.  I answered, “A long time.  I was just waiting for you to figure out a way how.”  God was heavenly smiling on my mom when I told her that.

The End.

About the Author (also written by the author)

Michael Keller is an 11 year old boy living in Gaithersburg, MD.  He attends Carderock Springs Elementary School.  This is the first year he has attended a typical school.  All his classes are now typical 5th grade classes except for math where he has been placed in a 6th grade class.  He holds no grudges that those around him did not know he had a sound mind.  He tells this  very personal story so that he might give a voice to those who do not have one.  His hope is that his story will open the minds of many to the hidden minds of those who cannot speak.  He asks all who read this to pass on the word.

If you cannot find the COMMENTS section below please click the blue "comments" link and this page will re-open with just this blog post.  Scroll to the bottom and you can post comments, "like" this post, and "share" it.  Thanks for reading!

 

Simple Things Matter - Autism Awareness

April is Autism Awareness month and really from coincidence, I've been doing a lot of thinking about Autism.....what's going on in the research? What am I seeing in my own practice? What are the some of the myths out there, even my own myths? So today, a myth re-thought.

My own personal contemplation started back around Valentine's Day.  My son Jonathan has a boy in class that he really likes talking with and even hanging out with.  His friend's name is Mike.  I didn't know Mike at the time, but it was few days before Feb 14 and Jonathan wanted to be sure Mike had a Valentine card during the class exchange. See Mike's not always in Jonathan's class, he's part of a Pilate Program at school and he's "included" in Jonathan's class at various points during the school day.  And yes, Mike has Autism.  Jonathan had run out of the store bought Valentines so he made Mike a hand made one, not really thinking too much about it, just wanting to be sure Mike had a Valentine.  It was a heart cut of of paper with a handwritten note.

A few days later I received an email with the subject "your lovely son"......

It was from Mike's mom and this is what she had to say:

I’m the mom of a 5th grade boy Michael who is in the facilitated communication “pilot program” at school.  I was quite worried that since Mike isn’t listed in the teacher’s homeroom, that he wouldn’t receive any Valentine’s Day cards.  But your son Jonathan gave him a handwritten Valentine’s Day card that said “Happy Valentine’s Day, Michael.  I hope you have had a good school year.  I love having you in my class.”

I must tell you that your son’s card made my son’s (and my) day.  Mike was over the moon happy with the words from your son.  Mike is so worried that he disturbs the students and he is a little intimidated.  Prior to this, he was at another school with all kids with autism and only 7 kids in his class.  This has been a big transition for him.  But since he received Jonathan’s card, he has said that “I really like school” and “I’m so glad to be going to [my new school]”.  I just wanted to make sure you knew what a lovely son you have and what a big difference his message has made for my son.

Reading this made me cry.  I'm a crier, yes.  Not because of what Mike's mom said about Jonathan, but because it was a smack in the face that simple things really MATTER.  I know I should know that, you should too! But it's moments like this that serve as a stark reminder.  It made me think about Valentine's and letters in general.  How nice would it be to receive messages of encouragement, compliment, thanks, etc from your friends, family, and classmates on Valentine's Day or any day?  That's the stuff that feeds the soul, that brings us up when we are down or even when we just need a little confidence boost. Do we really tell others how we feel, give compliments, just say something nice to someone....just because (even if they aren't nice to us)?? We live in a time of tweets, email, text, IM, but the hand written note is slowly disappearing.  Even for me it's hard.  I know my mom loves cards, but sending them somehow seems like a lot of trouble.   Maybe my challenge here and my challenge to those reading this in general, is to try and say something extra thoughtful at least once each day.  Something that takes a little extra effort.  Feeding and nourishing the soul matters, to everyone, even the child and the parent of the child with Autism. 

The reality is that persons with autism will almost certainly have pragmatic language difficulties.  They might not look you in the eye.  They might make weird noises or gestures. And they might experience and perceive the world differently.  But that has evolved into a myth out there that people with autism don't show or feel emotion. Emotion presents in different ways for different people, with and without Autism, but that does' mean it's not there.  I can't speak for anyone with Autism and many with Autism haven't found a voice yet to speak for themselves, but clearly Mike's voice is saying that these small actions do matter; his soul wants to be nourished too.  Small gestures are hugely important to him and his mom, just as they are to me and Jonathan. 

Race for Respect - March 30, 2014

This race is a great annual event.  If you have the time, please come out and enjoy and beautiful day, in every way, downtown.  I'm so sorry I won't be able to attend :(

Race for Respect, 5K and 1K Kids Dash! on Pennsylvania Ave in Washington, DC. 

First 1000 registrants will be entered to win a FREE mini-ipad.

Come join us and run or walk for Down syndrome Awareness.  There is a wheelchair start and strollers are also welcome at the 5K.  

The 5K begins at 9am,and wheelchair start at 8:55am and  Kids Dash at 9:45am, all on Sunday, March 30, 2014.

For more information on volunteer opportunities and buddy runners, please contactgena@dsnmc.org

Register HERE:  www.race4respect.com 

Facebook:  https://www.facebook.com/RaceforRespect 

Twitter: @RACE4RESPECT

Why speech therapy?

So why bother with private speech therapy? What's it do?  

Often times insurance won't reimburse for speech therapy even if it's clear your child needs it. In some cases, where there is an educational impact, your child may qualify for school based services. You should always check with your local school to find out what services may be available.  Educationally based speech therapy is governed on the mandates of the law and is not the same as private therapy.  However those differences are for another time. 

When your child has  speech-language based difficulties and insurance isn't offsetting the cost and/or your child doesn't qualify for county services, then you have a very conscious choice to make regarding private therapy.  Yes, private therapy is a  lot of money.  However, the reality is that communication skills matter, social-language skills matter, and clear speech matters.  Speech-language intervention facilitates the development of these skills.  Everyone has good things to say and great thoughts to share.  It's important that their message is clearly communicated.

I work with both young children and older youth.  For the young ones, improved communication skills builds self-confidence, decreases frustration (for both child and parent!), and improves a child's ability to understand her world and express herself.  Yes, that's very simplified.  It does much more than that too, but those are some of the most important components. When you have a young child, speech therapy is for the parent as much as for the child.  When parents know what to do and "how" to facilitate their child's development, it makes all the difference in the world.  My children didn't come with instruction booklets and I'm sure yours didn't either! When I feel that I don't have the skills necessary to help my child, that's when I turn to a professional. I find this concept to be a good gauge for parenting in general.  If you feel that you don't know "how" to help your child or you are feeling stressed about your child's development, consider calling a professional.  When searching for a therapist for your young child, be sure to choose one who specializes in pediatrics and who actively teaches parents what to do.   

For the older ones, the same bar is true - if you feel it's beyond your ability to help your child, seek help.  If your child is struggling with reading, learning, understanding, communicating, clarity of speech, social interactions or other speech or language based issues that you feel are outside of your realm of expertise, talk to a speech-language therapist. Calling in no way obligates you! Speech-therapists are able to answer your questions and tell you if an evaluation is warranted.  Personally, with the older ones I specialize in voice and clarity of speech.  The bottom line is that peers and adults tune out when they don't understand what's being said.   Beyond that, the unfortunate reality is that people judge you based on the way you sound.  It's not right or fair, but it happens.  Your voice is one of the first things people notice.  As children get older speech patterns become more engrained and can be more difficult to remediate.  Also older children with speech issues are often teased, and this is no fun for anyone.  Most importantly, back to my opening idea, they have great things to say.  We want that communication to be judged and listened to on the merits of what was said, not on the "way" it was said.  Speech therapy can help.  

Yes, sometimes a child may "outgrow" her speech difficulties, but often this is not the case, especially when a child is past age 7.  Personally, if I feel speech patterns are developmental and there's a chance that a child will "outgrow" the problem, I'll often suggest a home activities or a "wait and see" approach.  For example, four year olds often cannot say R.  However, if your 8 year old is having difficulty with that sound (or any sound), there is very little chance your child will "outgrow" it. It's a complex set of factors that will lead a speech-language therapist to recommend therapy.   Family history, history of prior speech-language, learning difficulties, and other risk factors will all influence a therapist's recommendations.