Online parent chat: Ask the SLP

This week, we took a chance at something relatively new - our second-ever online discussion opportunity for parents. The topic? Communication! Thank you to all the parents who participated in the chat live, to those of you who sent questions in advance, and to PACTT's speech / language pathologist extraordinaire, Jenny Westervelt, for being our expert-of-the-day! The questions and responses from our chat are below.

Q1: The teacher says he uses his device all the time at school, but he won't use it at home. Help?

A1: Just like you might need to talk more when you’re at work versus when you’re at home, your child tends to have more demands for structured communication at school and a little less at home. He also probably has a special way of communicating with you. But that doesn’t mean he couldn’t use more practice with his device at home! Start by helping him carry around the device in your house. Even if he isn’t using it there right away, it will help him see that the device is meant to be used everywhere, and that it’s not just his “school words”. 

Next, try modeling it yourself!  It doesn’t put any demands on him to just watch you use the device, which can help ease him into the transition of hearing his “words” spoken everywhere. When you’re watching TV together, use his device to say things like “I like that character, he’s funny” (press the like and funny button as you say them!). Or “Turn it up”, “I don’t like this show”, “Should we get a snack?”  Seeing and hearing his device used in more settings than just at school will help your child learn that these are his “words” and can be used everywhere!

Q2: He has an iPad for communication, but all he wants to do is watch YouTube videos! What can we do?

A2: This can be so tricky! What child wouldn’t choose playing Angry Birds and watching YouTube over having a conversation?  

If a student is given an ipad for communication purposes, I will right away lock him into the communication app using “guided access mode” so that the only thing that ever turns on is that communication app. That way my student won’t even know what he’s missing since he never sees the other apps. Even though there are some great apps for students with autism, we want him to know that his ipad is for communicating, and that the classroom ipads, family ipads or laptops are for leisure. 

If he is using his ipad for both leisure and communication, he’s not going to love it when you first lock him into his speech app using guided access mode. Try it in short intervals at first, maybe with a timer so that he can see how long he’s expected to stay in his communication app. 

Q3: Sometimes it seems like my child just can’t quite get the word out - it’s on the tip of his tongue. How can I help?

A3: Let’s say your child is trying to tell you where he wants to go, but is having a hard time getting the words out. Give him some hints first before you start playing the guessing game! 

First, give him a “semantic cue” or two - some clues about what the word might be (e.g. “Maybe a restaurant, or a store, or somewhere outside...?”)  If that doesn’t work, give him the beginning of the sentence and then wait a few seconds, such as “I want to go to…..”  

Is he still having a hard time getting the word out? If you are already pretty sure where he wants to go, you can give him the first sound of the word, (e.g. “I want to go to Mc….”). More often than not, that will do the trick! And if not, now’s the time to play the guessing game.

Ok. But what about for our AAC users?

Great question! Now let's say that your child is trying to open a bag of chips, but needs help. Let's also say that he has been using his AAC device for a while, and has practiced saying "help", but doesn't always know when to say it, or it seems like the word is on "the tip of his tongue." Give him some hints as well!

"Help" is usually on the main screen of his AAC device, as it's one of the most important vocabulary words. Give him some general hints before more obvious ones.

First, give a sweeping gesture toward his device to remind him to use his "words." You could say, "Hmm ... it looks like you need something ..." If he needs more, use your finger to gesture around the area of the button that says "help." Usually, that will remind him which word he needs to say. If not, point directly at the button for "help" for a more obvious hint.  

Q4: How do I teach a new word on a device?

A4: Learning new words on a device is like learning a whole new language - it takes time, practice, and a lot of imitation. If you’re trying to teach your child how to say “don’t” on his device (one of my favorite words to teach), model it!  YOU press the “don’t” button when you say “don’t” in conversation. While you’re chatting with your child, verbally say things like “I DON’T like broccoli”, and press the “don’t” button at the same time as you say it out loud. You want to teach him that the words you’re saying out loud are the same as the words on his device. 

Teach the same word in lots of different contexts. Press “don’t” as you say, “I DON’T like it when you grab my shirt”, “DON’T  go! Come sit with me”, or “It looks like you DON’T want that”. In order to teach your child new vocabulary words, you need to get familiar with where the words are yourself! Take some time to play around by making sentences and opening the different vocabulary folders. I have backups of each student’s vocabulary pages, so don’t be afraid to explore!

For more information on AAC use, or specific questions about your child, email Jen.

Family Feast 2015

Thanks to all our friends and families who joined us for our annual Thanksgiving Feast!

Coffee Chat: Transition

This week, we took a change at something new - on online discussion opportunity for parents. The topic? Transition! Thank you to all the parents who participated in the chat live, to those of you who sent questions in advance, and to PACTT's transition specialist, Lauren Mucha, for being our expert-of-the-day! The questions and responses from both chats are below. 

Question: If you child does not get into an adult CILA by age 22, what options are available for day programming, when does the planning start?

Response: For someone graduating soon, you can look at only day program options in case a CILA placement isn't available right at graduation. As far as timing, you can be planning both at the same time. I'd recommend you discuss this with your PAS agent.

We have done a Plan A, Plan B type planning with students. Plan A would be what you ideally want to happen, for example living in a CILA and attending a day program. Plan B would be to come up with an alternative in case that doesn't work out, like living at home and attending a day program.

Question: Can you be put on a waiting list for a CILA? If so, when?

Response: Yes, some agencies have waiting lists. Someone can be funded for a CILA at age 18, but typically can stay in a children's home until the day before turning 22.

Follow-up: Does PACTT have a CILA waiting list?

Response: Yes. PACTT does have a waitlist for CILA placement. Our adult voc program has current openings, but would have a waitlist if it became full.

Parent Question: How long do you have access to a PAS agent?

Response: You will always have the PAS agent.

Follow-up Q1: At the same agency?

Response: The ISSA services, which include the yearly ISP and quarterly check in visits only happen while receiving services. Assessing needs and finding placements when someone is funded are done by the PAS agent, even when someone isn't receiving services. The PAS agency depends on where the person is living. So, for residents of PACTT childrens homes, for example, it's Suburban Access. If someone moves to a home in Chicago, the PAS agency would change to CAU (north side) or CSO (south side).

Follow-up Q2: How does the annual ISP get done if your child is living at home?

Response: The ISP would be at your home or at the day program, depending on what services the person is getting.

Follow-up Q3: How long does it take to get a new PAS agent? When should the planning start for that?

Response: As soon as you're thinking that might be an option, talk to your current PAS agent. They transfer cases between agencies fairly regularly, and should have an internal process for that

Question: Do I really have to register my 18-year-old son for selective service?

Response: Yes. It’s the law. Our students won't qualify for military service, for many reasons, but it can affect other govt benefits if you don't register.

Question: When I'm looking for an adult day program for my child, what questions should I ask?

Response: What does a typical day look like? What activities/classes/programs are available each day? Do participants go in the community? Do they have vocational training or work experiences? What are the hours? Are there flexible scheduling options? How many participants are in the program? How many participants are in each room/group? What is the ratio of staff to participants? What type of transportation is provided?

If you go to observe a program, see if you can picture your child there and if it seems like a good
match. Watch how staff interact with participants. Do the participants seem happy? If you think about it, they're similar questions to the ones you asked when you were looking for the right school ...

Question: Does my child NEED to attend his IEP?

Response: It’s a legal requirement for students to be invited to IEP meetings that involve transition planning, but they aren’t required to attend. It is their life that we are planning for though, so it’s important that we involve them in that process as much as possible. Attending the meeting is a great way to build self-determination skills for a lot of students. However, some students do have a hard time sitting through the entire meeting, seeing their parents during the school day, etc. We can work on other ways to include them without making them sit through a meeting. Some students create Powerpoint presentations that can be shared with the IEP team. Sometimes students may come to the meeting, and then listen to their headphones or draw while we talk ... 

Question: How do students get connected to adult services?

Response: The first step is to contact their local Pre-Admission Screening or PAS agency to complete the PUNS questionnaire. PUNS stands for Prioritization of Urgency of Need for Services. The PUNS questionnaire determines what services, including adult services, your child might need now or in the future.

Question: What options are available for daytime programming?

Response: There are day programs funded by DHS for adults with developmental disabilities. Developmental Training or DT is a type of day program with activities and skills training and sometimes volunteering. Sometimes there is a community component or sometimes DT programs are mostly activities in a center. PACTT's adult program is a supported employment program or SEP. They find jobs for the participants in the community and provided supports like job coaching to help participants do the job.

For more information on transition planning, or to talk specifically about your PACTT student, please contact PACTT Transition Specialist Lauren Mucha at LMucha@pactt.org, or 773-338-9102 x2109. 

Thanks again to everyone who was brave enough to join us on this inaugural chat! - Paula

Fairy Tale Trail adventures

Our elementary class had the opportunity to explore the Women's Club of Evanston's Fairy Tale Trail last week. We loved all the sensory toys and fun decorations - thank you, WCE!

What they taught me: Reflections of a PACTT intern

Jalena Sidler was an Occupational Therapy, Level 2, intern at PACTT during Fall 2015. Here she reflects on her experience:

“I left feeling exhausted from observing, and in awe of the people who work here”

On my initial thought of PACTT, or more specifically, of working with pre-teens and teens with autism, I wasn’t sure what to expect. Frankly, I felt a bit intimidated! You see, I have only ever been around one person (that I know of) on the spectrum. One cousin who’s only (using “only” loosely) ailment was not being able to hug other people (tactile defense) and who started having seizures at the age of 7. To me and my family, she was the face of autism. Once I found out that I was going to be interning at PACTT I started doing some research. I’ve always known that autism was a spectrum disorder but I didn’t realize that it was based off of severity and support levels. Researching and reading something off of the internet proved futile once it came to actually working with the students here at PACTT. What I learned from the students and staff at PACTT cannot be learned in a book or on the internet.

Day 1 went something like this: arrived to see a bunch of people walking in the neighborhood surrounding the school. Saw some interesting things while said people were walking – some flapping, some crawling, some jumping, etc. I thought “ok, so these are the students.” Next, I go inside and begin meeting everyone and I am assigned to sit with the elementary class to observe. I thought “wow, this is a side of autism I have never seen. These kids need a lot of help. These kids seem pretty severe. They can’t possibly be able to do much without help”. Full disclosure: I was scared! I saw some hitting, kicking, throwing, meltdowns, and tantrums. Why was no one talking? Why was he hitting her? Why is he making that noise? The questions went through my head. Then a student hands me the feelings card that read “How are you feeling?” He stood there waiting so patiently and I answered “excited” because obviously that was the closest to “scared” I can get to without hurting feelings or offending. I left feeling exhausted from observing and in awe of the people who worked here. They endured so much for these kids and truly seemed to care.

Day 1 of week 2 went something like this: arrived to see each individual student participating in their daily morning walk in the community surrounding their school. This community who I learned was very accepting of these teenagers. I see each student as an individual fulfilling their sensory needs after a long bus or car ride to school. I see each staff member fully engaged in the student they are walking with. I see a fully dedicated staff using this time for not only sensory needs, but for safety education, for companionship, for community integration. I was not scared and, in hindsight, embarrassed of myself for even being so during those first couple days of observing. I started to get to know the students and looked forward to cooking class with them. It was a chance to see what they were capable of doing for themselves.

“It was a chance to see what [the students] were capable of doing themselves”

In 10 short weeks, my views on autism changed dramatically. I watched students who I thought were incapable of doing instrumental daily activities prepare meals with only gestural support. I saw students complete art projects and interact at story time by matching words and THEN finding the same word on their devices. I saw structured tasks be completed in no time. Because of all of the things they can do, I learned to not look at someone and think “wow, this person needs a lot of help. This person seems pretty severe. They can’t possibly be able to do much without help”. I know that as an occupational therapy assistant, I will set limits for many of my future students, clients, or patients and I now understand that I can either set limits that I think they can meet or I can push them past limits that they thought they would never meet. I can take what I have learned from every wonderful person on staff at PACTT and truly dedicate myself to helping that one person be better, hold them to high standards and never think “wow, this person can’t possibly do this.” Out of all the things they can do, the one thing they do best is teach us that you cannot judge a book by its cover. That and patience…….a whole lotta patience.

To participate in an internship at PACTT, please complete our Volunteer Request form.

A chance to explore

Clubs time give students an hour each Monday afternoon to explore something new, something creative, or maybe just something that sounds like fun! Students and staff join mixed groups from across the building, and anyone - paraprofessional, teacher, or therapist - is welcome to throw his or her hat in the ring as a Club leader. This semester's clubs include Music, Art, Gardening, and Community Cleanup.

Community Cleanup Club prepares for their neighborhood trash pickup:

  

Art Club explores color mixing with paints:

   

Music Club tries out our new instruments - and gets a mini-concert from Jeremy:

     

An OT intern reflects on her semester at PACTT

Laura Robertson was an Occupational Therapy, Level 2, intern at PACTT during Spring and Summer 2015. Here she reflects on her experience:

For the past 3 months I have been interning with PACTT's OT department. I had the chance to present at the new employee orientation, co-lead cooking groups, go on outings with the students, take part in Field Day, participate in student IEP/EDCs and perform part of their 3-year evaluations. I’ve modified some of the equipment used to teach students buttoning and created an independent work station task for student to practice buttoning that can be adapted to student’s needs. While I was here I also got to participate in planning for a new sensory space that will be created at the school.

My last few weeks here I have been helping put together new recipes for classroom cooking. The goal is to teach the students basic recipes that they can do at home in a safe manner and expose the students to different combinations of smells, tastes and textures. If these recipes are a hit, they will become part of the regular school year rotation. 

As my time here at PACTT comes to an end I’ve been reflecting back on all I have learned and how wonderful the staff has been. They have been very welcoming to me and have been patient while I learn. I’ve learned a lot in this internship and will be able to apply what I learned to whatever setting I work in.

To participate in an internship at PACTT, please complete our Volunteer Request form.