Every Father’s Day, I think of a story that starts with a meeting about 3 1/2 year old Jack*. Jack’s dad attended the initial meeting and knew everything there was to know about Jack. Jack had a diagnosis of autism and apraxia. His dad said Jack had three word approximations and there were only three sounds he could make, but that his intonation changed and he and his wife could tell what Jack needed…well, sometimes.

It was determined that it was appropriate to start using augmentative and alternative communication (AAC). His dad asked if a device would stop him from talking and I gave him the answer I always give when asked this question: All of the research and my personal experience show that using AAC will only help a child to become verbal. If he is able to develop verbal speech, he will. If he does not start talking, we’re giving him a way to communicate and develop language. Using AAC does not mean that you are giving up on verbal speech.

His dad (and mom) attended every training and Jack thrived. He quickly started putting words together on the device and he started saying words verbally. His mom started to write every new word he said in a book, and everyone else did the same. Jack started putting words together verbally and forming longer sentences on the device. It was magical, not only for his parents, but for everyone involved.

At Jack’s last monthly meeting for the school year, his dad told this story (as I remember it):

My dad would always take me to Boston for a Red Sox game right around Father’s Day (Boston is about a 5 hour drive). 

When I had a son, I always said that I would continue this tradition with my child. I wanted to take Jack last year, but I was worried because he couldn’t tell me what he needed and his mom is better at speaking “Jack” than I am, so I didn’t take him. This year, since he’s been able to say some words (he was using about 200 words verbally at that point) and use the device, I decided I would take him to a game, so we went last weekend.

I bought us matching shirts and hats and we talked about it before we left.  We told him it was going to be “guy time,” and Mommy was staying home. Jack was excited and so was I because this was something I had thought about from the very first time I held Jack in my arms.

We made it to the game and Jack’s eyes were huge with wonder as he looked at the stadium. He asked me for popcorn, cotton candy, water ice, a hot dog…and of course I reinforced everything. When he pointed to the foam finger and said, “Hand please,” I bought that too.

We got to our seats, and I looked at my son with every type of food that they sell at a baseball stadium and several souvenirs. I took it all in because, this was my moment. I sat down next to Jack and thought of my dad, and I wiped tears from my eyes through the top of the first inning.

When the visiting team finished batting and everyone clapped, Jack looked at me and said, “All done. Home.” I explained that the game just started and that we still had more time. Jack listened and ate more cotton candy, but after the Red Sox were finished batting, and everyone clapped again. Jack stood up as the players were running off of the field and said, “Daddy all done.” So we left after the first inning, but we did it without a melt down because he could tell me what he was thinking.

Everyone in that meeting simultaneously wiped away our own tears and laughed. As parents and professionals, these are the stories we are working towards each day. So when AAC works in a dream-come-true kind of way, it’s life-changing.

I think that strong dads give their children exactly what they need, when they need it. I’d venture to say that Jack’s dad would have been his baseball coach, a dance dad, or a chess opponent, if that’s what his son needed. His son needed him to learn technology to be able to help him communicate, so he did.

If there’s one thing I can say that I think is true of almost every parent of a child with special needs, it’s that they don’t take anything for granted. Dads of “typical” children most likely did not get teary-eyed when their child ran past them and wished them a Happy Father’s Day.  They attended a baseball game with their son without a thought as to whether or not their child would be able to communicate their needs and wants.  This weekend, we’ve heard from several families who have a child who is nonverbal, and the child has been able to say “Happy Father’s Day” for the first time this year.

For some dads, the words are the gift they’ve always wanted.

*Not his real name.

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To our students who are using AAC,

We know you are listening. We want to start by saying thank you for letting us in and letting us be part of your life. We know it is difficult for you to tell us things, and we appreciate that you make the effort. We’re sorry for any mistakes that we’ve made. Please forgive us for the times that we missed a sign or couldn’t understand something that you were trying to verbally say to us. We are learning too.

We hope that you have enjoyed our time eating snacks, reading books together, and having fun conversations as much as we have. We hope you have heard us talking about how smart you are, and how much potential you have. It is all true.

We’re not sure if we will be seeing you as much next year (we usually don’t find out until September), so as we wrap up another school year, here are some things we want you to remember and some advice we have for you:

First, we know you have heard people say horrible things about you right in front of you. They are the ignorant ones, and there are a lot of people working to educate them. In the meantime, ignore them, and whatever you do, don’t believe anything they say. Know who you are, and believe in yourself. If you have to, get angry and let that motivate you to learn how to tell them off. Learn how to say, ”Go away,” ”Stop talking about me,” or “I can hear you.”  Keep saying it until there is no question about your intent.

Second, let people know you are in there because you need people and relationships.  We all do.  Look in the direction of people as they enter the room. If they say something you agree with, make eye contact with them. Smile or laugh if they say something funny. Reach your hand out to them if they say something sad. Show them that you understand. You need one strong person who believes in you, but the more you have, the better. It’s not fair, but for the rest of your life you will have to “prove” to people that you are intelligent. You will have to fight harder for the same rights that everyone else takes for granted. Every time you meet someone, you will have to say something “witty” on your device in the first 30 seconds, so that they will see you as a person. Like we said, it’s not fair, and on behalf of humanity, we are sorry.

Third, listen to the people who believe in you and prove them right.  “Show off” for them. We have stayed awake at night trying to figure out how to help you access your device, and we worry when we know that you are not yourself. That day that you told me you were “afraid” on your device but couldn’t tell me why, I sat in my vehicle and cried because I would never know. It means so much to the therapists, teachers, and aides who care about you when you say that you like to talk to them or smile and reach for them in the hallway. You don’t owe us anything, but when you tell us things, it makes us want to do more so that we can know you better.

Fourth, tell your parents that you love them because fighting is exhausting, and they may need your words to get through the day. A lot of people will come in and out of your lives, but your parents will be there forever, loving you unconditionally. They have watched you sleep with tears running down their faces, wondering what else they can do. They have researched the Internet hours beyond exhaustion trying to find a treatment, an article, or a system that may help you. They have figured out how to speak your language, even without words.  So, however you can do it, let them know that you love them.

Finally, you are special and you have a purpose in this world, just like everyone else. Don’t be content to sit on the sidelines and watch. You can accomplish great things, but you have to work hard.  It may take you a little longer, but let yourself dream…and then make it come true.

Love,
Heidi and Renee

The post A Letter to Students Using AAC: Remember These Five Things appeared first on Speak For Yourself.

The Southern New Jersey Autism Speaks Walk Now for Autism was this weekend. It’s a great opportunity to see the children we work with outside of the classroom…in the fresh air, surrounded by bubbles and bouncy castles. We were involved and attended the walk before the creation of Speak for Yourself, and actually before the creation of the iDevices. The last couple of years, we have been part of the Resource Fair. One of the things that make this event unique is that we are able to bring our children with us.

We don’t usually write about our own children, but we’re going to today. Between us, we have six children. Renee has four and I have two, and our role as mothers influences our decisions as therapists. We think, “What would I want done for my own child?” and we do it for our clients.

Our role as speech-language pathologists (SLPs) influences our role as mothers, as well. We talk to our children constantly.  When they were very young, their lives were narrated, their receptive language was informally assessed on a regular basis, and they were exposed to AAC (Augmentative and Alternative Communication). My son used five signs when he was nine months old, and Renee’s four year old was exposed to “talkers” as soon as he could purposefully move his hand and isolate an index finger. I think this is common among SLPs in general. We know that sometimes children have problems talking, while some parents are blissfully unaware that a problem with communication is even a possibility. There have been times where I’ve told a mom at a playground or a school function what I do for a living, and she says, “You mean sometimes kids can’t talk?”  As speech-language pathologists, we know how truly important it is for a child to be able to communicate, and we don’t take it for granted. We use our knowledge for our own children and children in our personal lives, and we celebrate milestones in speech and language development that other parents may dismiss with a statement like “Isn’t that cute that he pointed at the dog and said ‘daw-die’!?” We know that verbal speech is not guaranteed.

It is not a profession that you “leave at the office,” so when I’m with my fifteen-month-old great niece at a family dinner, I respond to her vocalizations, expand on her single words, and support her turn taking skills by responding to her babbling.  Parents use these strategies naturally without knowing what they’re called, usually children develop verbal speech, and the parents never know that there was even a possibility that their child would not be able to talk.  Unless, of course, they don’t start to talk.  Children of SLPs could probably all get together and exchange stories about how their parents worked on their language skills because it’s true.  Children of SLPs who specialize in AAC could probably talk about recording their voices into devices and using various devices to test the functionality for a student. While Renee and I talk daily and typically more than once, our families don’t get together frequently. However, when our children are together, they have the bond of mothers who are SLPs specializing in AAC, but they also belong to a highly exclusive “my-mom-spent-two-years-of-our-lives-developing-an-app-and-fighting-a-federal-lawsuit” club.

The Autism Walk is their opportunity to see us talk to people and to meet some of the children we work every day to help. They can see us working directly with children who come to our table.  It is a day when our professional lives and personal lives overlap, which makes for some interesting and amusing moments.

Here is a picture of my mom and my two children:

Here are three of Renee’s four children (her other son had a baseball tournament):

After the two minutes that it took to take these pictures, I handed my phone to my 13 year old son and said, “Can you get a quick picture of me and Renee?” It ended up being anything but quick, and my son took a total of 39 pictures, laughing the whole time. The next sequence of pictures had us laughing for a good part of the day. (Make sure your sound is on, and so that we give appropriate credit, the song is “Forever Young” by Bob Dylan.)

Autism Walk 2013

At these times, where it is an accomplishment to get a picture taken, we marvel at the miracle that it took to create Speak for Yourself.  Because we are SLPs who spend our days working with children who are nonverbal, we also know that it is a blessing to be interrupted by a child’s voice. We are grateful, in our personal and professional lives, when a child tells us something.  And personally, we are thankful for our children who help us test the app, carry boxes, babysit younger siblings, and get up early on a Saturday morning to attend an autism walk.  We love our roles as moms and SLPs, and our hope is always that being good at one will make us better at the other.

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If your child is nonverbal or has limited verbal ability, AAC should be considered and the child should have an AAC system. If he does not have any communication system, he will not have “good” behavior because that is all he can use to have his needs met.  For some children, behavior is their most reliable form of communication. If your child has no communication system, start the meeting with that issue and make communication the priority.

If your child is using an AAC system, ask about that system. When I say AAC system, I’m not talking about the same communication book that he has NOT been using for the past three years.  I’m talking about something that works for that child. Really works. If it is not working, and you’re being told year after year that “We’re working on signs and PECs,” ask detailed questions. These questions could be in regard to any AAC system, so you can substitute the name of the system or the device that your child is using.

A communication book that children would use to point (in this example) to the words they want to say.

~You’ve been working on signs and PECs for 3 years, how much language has my child acquired in that time?

~ How many signs does my child independently use each day?

~ How many PECs does my child use and is the communication book always with my child?

~ Are you using the actual PECs protocol (which requires a 2:1 ratio) or is it a less structured icon exchange or pointing system?

~ How often is language modeled for my child using PECs and signs?

~ Is the person teaching the signs fluent in sign language? Are they able to spontaneously teach a sign to my child when they see that he is interested or excited about something?

~ Who are his communication partners? Do other children use or understand sign?

~ Is this the same approach you would be following if this was your child?

Put it in perspective for yourself. For example, if a child is learning language at a rate of 5 words per year, by the time he graduates at age 21, he will have 85 words. An average 3 year old has a 1000 word vocabulary. How long are you willing to continue with something that is ineffective? I have heard teams say that they have spent an entire year trying to teach two preferred items using signs and PECs and the child “is not discriminating between the pictures.” Within 30 minutes, those children are able to independently request those same items on a device.  So what’s the difference? Voice output. Some children need voice output because it provides auditory feedback, and truly gives him his own voice. It is confusing for some children to have people speak for them because they know that it’s Mrs. Smith’s voice saying “I want pretzel,” so if a child is having difficulty with processing in addition to being nonverbal, they may think that Mrs. Smith wants a pretzel. As a side note, this is also important to consider if you are using something with voice output that requires recorded speech. Use a voice that is not familiar to the child, so he can identify it as his own. Some children benefit from signs and PECs, some children will not. If you wait for your child to be successful with a system that does not have voice output, you may be waiting for a very long time.  If your child is not benefiting, it is okay to be the person in the room who says, “The Emperor is naked! This is not working.  What else can we try? ” If the team has been trying the same approach for years and the child is not making progress, it is not the child’s fault and not because the child lacks the skill or desire to communicate. It is time to try a new approach.

If there is disagreement about whether the child is communicating effectively and making progress – even if you are the only one who disagrees – ask for data. Before you leave the meeting, put someone in charge of making sure your questions are answered within a week. Ask them to just pick a day and take data on your child’s communication.

If the team agrees that your child is not making progress, decide on a plan before you leave. Make someone accountable to try something different for your child. Choose someone who speaks positively about your child and believes that he has the ability to learn something new. If you look around that table, and you can’t find that person, you have two choices: Ask for someone new (an outside AAC consultant, a SLP in the school who is more experienced with AAC) or be that person who believes in the child.

Once everyone agrees that the child is capable of more and doesn’t really have an effective system to use, they’ll realize that they better go get some thread and a sewing machine because these meetings, from now on, are going to be an honest discussion about what is actually happening. This is the time to put the pieces together and give the child a system that will allow him to be successful, so that next year when you talk about his progress, you’ll be talking about the beautiful tapestry of language skills and the patterns that are in place to continue expanding.

“I want pretzel” would be spoken as each word is selected in the Speak for Yourself AAC app.

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We are Heidi LoStracco, MS, CCC-SLP and Renee Collender, MA, CCC-SLP- mothers, ASHA-certified speech-language pathologists who specialize in and have a passion for AAC, creators of the Speak for Yourself AAC application, and AAC consultants who still work daily with 3-21 year old students who are nonverbal or limited verbally using AAC.  Anything we write is solely our opinion based on our education, research in the field, and our own, everyday experiences. 

Our first post is something that was written in response to a question from the students at D Voiced about what drove us to create the Speak for Yourself App.  Here is our answer:

When people ask us what drove us to create Speak for Yourself, it’s difficult to pinpoint any single driving force. The short, true answer is that we created it because we wanted to make a clinically sound language system available and accessible to as many people as possible, regardless of disability (autism, cerebral palsy, genetic syndromes, apraxia). It started with the premise that everyone should have the right to communicate.  Communication allows people to build relationships and participate in life. Everyone has something to say.

We are speech-language pathologists and Augmentative and Alternative Communication (AAC) Consultants who have spent years working strictly with children (3-21 year olds) who use AAC.  Prior to creating Speak for Yourself, we completed AAC evaluations for students in New Jersey and then worked with the students and teams to support language development and device implementation strategies. We would also help parents complete insurance and funding paperwork and work with districts and device companies to secure a device for the student.  Of course, we’re in New Jersey where insurance typically covers durable medical equipment.  The rest of the world is not so fortunate. In many parts of the country and world, insurance coverage for communication devices is not an option. The process was time consuming, (at the minimum a few months…sometimes years), but when everything worked as planned, the students had a voice, and we breathed a sigh of relief and shared in the students’ success.  Then we were able to get to the real work…implementing AAC and teaching the child to use the device.

Unfortunately, everything doesn’t always work as planned. For some nonverbal students, we would work with the teams and support them through the trial and paperwork process, but something would go wrong. The insurance company would deny coverage stating that a device is not “medically necessary.”  The district would say that a device and accessories totaling around $9,000.00 was not in the budget. Parents would lose their job and insurance coverage. Whatever the reason, some of the students, no matter how successful they were, no matter how much their behaviors had decreased since they had access to a communication device, did not get their own device. Those are the students who drove us to create Speak for Yourself. We would go into those same classrooms to work with another student and a former student would come over to us. She would look in our bag. She would use the “new” student’s device to tell us something that she remembered from the time that she had a voice, and her face would light up. The classroom staff would direct her to her next activity, and her smile would fade as she walked away. Eventually, she stopped interacting with us. We would walk into the classroom and she sat quietly in her cubicle. Stuck in her own mind with the ability to communicate, but not the tool. Heartbreaking.

When the iPad was invented, we saw the market shifting. Slowly at first…a student here and there, but we saw the potential.  Districts who were not able to buy $9,000.00 devices budgeted for iPads in bulk. Districts and  parents were asking for our help to reprogram apps. We began to realize that it was the only chance some children were going to get to have a voice. We reprogrammed…extensively. We started talking about what we would do if we were designing our own app…and we haven’t stopped since!

Many of the features in Speak for Yourself came from watching what children did naturally when they used AAC. For example, when a button didn’t speak when it was touched, they would hit that same button again.  As it turns out, that is an innate behavior and it is true of anyone…if you push a button expecting something to happen and it doesn’t, you automatically push it again. That is the reason that the core vocabulary word on the main screen is in the same place on the secondary screen.  Also, we noticed that we could reliably get most students to access two buttons prior to having the word spoken.  When they were required to access 3 or more buttons, we would lose some of them.  When we designed Speak for Yourself, we organized it so that the user had access to 14,000 words, with no more than 2 touches to say a word.  There’s no complex page navigation and motor planning remains consistent throughout the user’s lifetime. Once they learn to say “drink,” that is how they will say it for as long as they use the app. This allows language to be cumulative in the same way that it is cumulative for verbal children who are learning language. You say “drink” now the same way you said it as a young child.

We designed the blueprint of Speak for Yourself as a PowerPoint presentation, and we looked at each other and knew that it would work and make a difference in someone’s world. Communication is a basic human right, and if someone has a pulse, they have the right to communicate their wants, needs, thoughts, ideas, and feelings.  We have seen that glimmer in a child’s eye, the relaxed smile, and the weight being lifted off of them the first time they are able to express themselves. We know, without a doubt, that your world changes when you can Speak for Yourself.

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