Posted in Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #180~Special Needs Moms,Let Go of the Guilt

Blog #180~Special Needs Moms, Let Go of the Guilt

No Guilt

Am I doing enough for my child?  Should I switch to a gluten-free diet?  Does my child need more ABA (Applied Behavioral Analysis) therapy?  Maybe I should be diffusing essential oils?  These and many other questions swirl constantly, in the mind of a parent having a special needs child.  I should know after 23 years of raising my son, Nick.  He has a dual diagnosis of Down syndrome and autism.  Over the years, I’ve allowed doubt to creep in.  You see other moms talking about intense ABA therapy, up to 20 hours a week.  You hear testimonials of how a gluten-free diet helped to increase speech and decrease problematic behaviors.  Then, there are the success stories and pictures plastered over social media groups.  Compelling accounts of children excelling in Special Olympics, summer camps, recreational programs and the latest programs sure to launch your child new heights.  There is a tremendous amount of pressure to do it all.  So, you begin to question yourself as a parent.  Am I doing everything I can to help my child with special needs?  This is when the guilt begins to seep in.  That’s, when you need to let go of the guilt.

Parenting is a balance act.  The responsibilities of running a household, taking care of children and their activities along with your own personal job and welfare, can be enormous.  At several points over the last 23 years, I’ve hit walls where the pressure is just too much.

At those junctures, it’s important to stop, take a breath, and re-evaluate what works for your child with special needs, and the entire family……

*RE-EVALUATE- Which treatments, therapies, and recreational programs are useful? Where are you seeing growth and enjoyment for your child?  Weigh the benefits against the disadvantages of each program, treatment, and therapies that you are considering.

*PRIORITIZE- What activities are essential for my child and any siblings?  Which of these activities are needs/must haves (like swimming lessons), and which are wants (like a recreational soccer program)?

*STRIP BACK- After you’ve re-evaluated and prioritized, create a new schedule that suits your family.  Listen to the cues of your child, (and yourself).  Is it stressful, time-consuming, expensive or sapping your energy?  Has it become a huge inconvenience and unfair to the rest of your family?

Right now is a perfect time, before school starts, to take a deep look at all the therapies and activities your child and siblings are involved in.  Are these programs enhancing their growth?  How much time are you spending in the car, commuting all over town for these therapies and other programs? Sometimes, it’s just TOO MUCH for you child and other family members.  Consider scaling back, and opt to incorporate learning activities at home. Ask your child’s therapists for suggestions on how to do this.  With their help, create learning (TEACCH) activities that can be done at home.  It really helped me to achieve better balance, when I scaled back, and incorporated a few of the TEACCH activities along with natural occurring jobs around the house, instead of driving all over town each day to therapies.  🙂

TEACCH (Treatment and Education of Autistic and Communication is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.  

Here are some TEACCH bins we do in our home with Nick…..

Task Strip with a highly preferred reward to work towards. Nick picks out a reward  from his PECs (Picture Exchange Communication book) or AAC (Augmentative and Alternative Communication Device).  He usually chooses a Sprite….

Task Two Strip

Nick get’s handed the #1 and matches to the bin and completes the activity.  Once this is done he puts the #1 on the green task strip.  This is repeated for all four bins. The activities range from sorting, matching, assembly, folding, and fine motor.  Bins can be customized to fit the needs of an individual child.  These are just a few of many Nick does.  Be sure to mix in some that have a high success rate, with more challenging activities suitable for your child:

bins 1 and 2   Bins 3 and 4

Naturally occurring activities can also be added around the house throughout the day.  Examples include unloading the dishwasher, garbage/recycling, laundry, putting groceries away, cleaning counters, vacuuming, and gardening.

Nick watering plants

All these activities help to build new skill sets, confidence and independence.  The TEACCH activities are also implemented by respite caregivers, which we’ve hired with the help of state waiver funding.  These caregivers work on goals both in the home and out in the community. Respite workers can also help take your child to afterschool activities such as therapy, Special Olympics/ sports or swim lessons and social groups. Having respite care or hiring a babysitter, allows a parent to get a break and take time to get out and enjoy their own life.

It’s so easy to get bombarded with advice on treatments, diets, therapies and recreational programs related to special needs.  As a parent, you need to decide what is useful and stop feeling guilty about doing everything single therapy and program to help your child.  Do your research, weigh the pro’s and cons, and decide what works best for your child and family. Consider incorporating TEACCH activities at home, instead of running and around, and spending more time in multiple therapy clinics.  Don’t allow those guilty thoughts to rob your peace, or make you doubt your parenting skills.

relax boardwalk

That’s what is in my noggin this week.

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

Posted in Behavior/ ABA, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan)

Blog #179~Down syndrome and Autism-Unlocking Your Child’s Potential

Blog #179~Down syndrome and Autism-Unlocking Your Child’s Potential

When your child has a dual diagnosis of Down syndrome and autism, the game changes.  Speech may be limited or even non-verbal, which may lead to behavior problems.  Sensory issues can be extreme and interfere with social interactions and learning.  My son, Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  His speech is limited, and he is a sensory seeker.  Over the years, with the help of some amazing teachers, therapists, and autism behaviorist specialists, he has developed skills which have allowed him to contribute both working in his adult day program, and here at home.

So how do you find the key to unlock your child’s potential?

padlock-unlocked_318-40940The key lies in identifying your child’s strengths, and working to build upon them.  First of all, just because my son’s speech is limited doesn’t mean he can’t communicate.  One of Nick’s assets is his receptive language, which is the ability to understand information.  Many of his goals in his IEP (Individualized Education Plan), were planned around using this strength when he was in school.  Nick was able to develop skills to become more independent in self-help, and other jobs both at home and school.  These skills were enhanced by using educational materials and supports that were written into his IEP.  Such materials included a PECS book (Picture Exchange Communication System) with training for staff, parents and child, Augmentative Alternative Communication (AAC) devices,  task strips, social stories, a picture schedule, video modeling, and a reward system.  All of these supports helped Nick to navigate his routine and built upon his functional and independent livings skills.

APE swimming 006 (4)

Besides his receptive language, Nick’s other strengths are his desire to please and take the initiative.  He is a taskmaster!  When Nick was younger, his teachers pointed out how good he was at matching.  A lot of his goals were structured around this.  Nick has always had a keen eye, and notices where everything goes around the house.  Anytime the batteries died on one of his musical toys, he would go to the kitchen drawer, pull out the screwdriver and hand it to me with the toy.  As he grew older, I recall him nudging his older brother over to help unload the dishwasher.  He knew which cabinet every single plate, cup, pot, pan and utensil were stored.  Shortly thereafter, I let him take over the chore (with no complaints from his older brother, Hank). 🙂

Nick still takes great pride in unloading the dishwasher today!

Nick dishwasher two

Here are some other ways the taskmaster takes initiative:

Nick getting out ingredients and utensils for his salad….

Nick dinner prep

As soon as he saw the pan of water on the stove, he went to the pantry and pulled out the ingredients to make pasta…..

Nick past cooking

Using his strength of taking the initiative, we have built upon this to create other jobs both at home and in the community.  When he was in school, his teachers recognized his sensory seeking needs and channeled them by doing “heavy work”.  An occupational therapist can assist with ideas to implement a sensory diet into your child’s routine. Nick likes to throw and swipe things (and still does).  It has helped to find activities with heavy work or that mimic this sensory need.

Here are a few of the jobs that does:

*Recycling (replacement behavior for throwing)

*Can crushing (sensory and motor activity and replacement behavior for throwing)

*Carry laundry basket and load washing machine (heavy work/ organizing)

*Put away groceries (organizing activity)

*Empty Dishwasher (organizing and sensory activity)

*Cleaning/ wiping down countertops and windows (organizing activity)

*Vacuuming (heavy work which is calming)

Nick working at a residence facility in high school….

Nick vacumming_Tabor Hills (3)

Nick doing volunteer work at GiGi’s playhouse with in his current adult day program…

nick-cleaning-gigis

There is so much your child can learn when you identify their strengths and unique talents.  When you find what motivates your child, you can build and expand upon it.  Work with your child’s IEP team, therapists and autism specialist, to identify those areas.  Then together as a team, create a plan with specific and measurable goals, that will enable your child to grow and be successful.  Unlock your child’s potential, and watch them soar!  That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Uncategorized

Blog #155~More Than Just Down Syndrome,DS-ASD

Blog #155~More Than Just Down Syndrome, DS-ASD

My son, Nick has Down syndrome. There came a point when I felt like we didn’t fit in with the Down syndrome support groups. We stopped going to the local support group holiday parties, play groups and other fundraising events. My son, Nick lacked speech and displayed unusual and repetitive behaviors.  These stimming behaviors included tapping, shaking and throwing objects.  Vocal stimming and yelling was another behavior that he exhibited.  His speech delays resulted in frustration on his part, which led to behavior problems and violent meltdowns.  It became apparent that this was more than just Down syndrome, when he hit puberty.

photo-26

We approached the elementary school IEP team about these outbursts, where he would throw things, trash the classroom along with pinching and scratching staff.  It didn’t seem like any of us, could get a handle these problems both at school and in our home.  The school was reluctant about getting an autism evaluation done, as they stated; “We have a primary diagnosis of Down syndrome we can work from”.  Rather than push the matter with the school, we chose to have an independent evaluation done and paid for it (with some help from our private insurance), out-of-pocket.

It was money well spent. Nick got the diagnosis of Down syndrome and autism (DS-ASD).  If you suspect that your child’s behaviors are more than just Down syndrome, I would strongly suggest getting a medical evaluation done by a clinician.

The diagnosis of autism, was like getting the magic key, that unlocked the door to more services for our son...….

magic key

Here are the additional services we received with the secondary diagnosis of autism for our son Nick who also has Down syndrome.  Obtaining these services took some time, and didn’t happen all at once.  But the effort to get them, has been well worth it. These services were provided in part, by the school district and outside agencies:

*Behavior intervention by the school district,  BCBA certified autism specialist resulting in a Functional Behavior Assessment (FBA).  This lead to the development of a behavior plan, specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns.

*Speech support and training on how to implement a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.

ipad touch chat.JPG         photo (123)

*Toilet Training and workshops for home support  This included coaching on how to develop and implement a timed toileting schedule and visual supports to promote independent living skills inside the home.

*Additional State Funding (In-Home Family Support Child Based Waiver)  This funds respite care, behavior support and safety/ health equipment to support the child at home.

*Federal Funding (Supplemental Security Income-SSI)  A federal  income supplement program funded by general tax revenues (not Social Security taxes): It is designed to help aged, blind, and disabled people, who have little or no income; and: It provides cash to meet basic needs for food, clothing, and shelter.

The formal, dual diagnosis of Down syndrome and autism (DS/ASD), helped school staff, therapists, medical professionals, family and friends get a better understanding of Nick’s behaviors.  By getting access to these additional supports, we’ve been able to change the strategies needed to help Nick navigate his world.  His communication improved, allowing him to feel understood, respected and less frustrated.  As a family, we felt better assisted with the autism training and having funding for respite staff that takes some of the burden off us.

If you suspect your child with Down syndrome may have autism, read this link by the National Down Syndrome Society for the signs and symptoms: @https://www.ndss.org/resources/dual-diagnosis-syndrome-autism/

Additional resources for navigating a dual diagnosis of Down syndrome and autism:

*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals and Supporting Positive Behavior in Children and Teens with Down Syndrome books:

down-syndrome-and-autism-intersect

Book Supporting Positive Behavior DS

*The Kennedy Krieger Institute- https://www.kennedykrieger.org

*Down Syndrome Association (UK)- http://www.downs-syndrome.org.uk/for-families-and-careres/dual-diagnosis/

*National Association for Down Syndrome (NADS)http://www.nads.org/resources/down-syndrome-and-autism/

*Facebook Support Groups:

-Down Syndrome With A Slice Of Autism

-Autism Discussion Page (Bill Nason)

-Down Syndrome and Autism (there are several of these groups, all very supportive and openly honest)

The challenges of having a child with Down syndrome and autism are unique.  So many parents say that they no longer fit in with the Down syndrome support groups and can’t relate to the autism groups either; they feel isolated.  You as the parent, know your child best.  If you suspect that your child has more than just Down syndrome, take action to get a clinical, medical evaluation and find the additional support to help your child.

That’s what is in my noggin this week 🙂

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism 

 Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome

Blog #118~If You Can’t Fix It, Duct It!

Blog #118~ If You Can’t Fix It, Duct It!

duct tape

I reported two weeks ago, that Nick’s talker (AAC device) has survived being dropped from the second floor of the Naperville Library and onto the railroad tracks off Montgomery Road.  The case is sturdy but has taken a beating.  Nick is 21 years old and has Down syndrome and autism.  He’s a crafty one.  It’s all we can do to keep up with his antics.  The school team has come up with two things to secure his talker better.

ipad touch chat

First, the team has devised a bumper around the iAdapter case with foam and duct tape to absorb the impact. I’m thinking that we need to patent this prototype.

IMG_5231

In addition, Nick has it tethered securely to his body with two straps (one over the shoulder and the other around his waist).

IMG_5116 

Nick is using his talker to make requests for iPad, Sprite, food items. When he burps he pushes the buttons, “excuse me” or “that’s gross”.  The other night I was busy doing laundry and getting dinner ready.  He was getting impatient and growing tired.  He proceeded to push “stop”- “I’m tired”- “I want to eat”.  When he finished dinner, he pushed the buttons “finished” and “bedtime”.  I’ve also noticed that he is using more verbal language since getting talker 2 months ago!

At home I figured out a way to tether it to a shelf with Velcro straps in the kitchen so it’s accessible.  So, between the straps and duct tape, we are staying one step ahead of big guy (at least for now). Hey it’s Nick’s world, the rest of us are just trying to keep up.  That’s what is in my noggin this week!

~Teresa

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome

Blog #114~SETT in Motion

Blog #114~SETT in Motion

Last week, I wrote about the process of a SETT meeting.  Recently, we did a SETT meeting at Nick’s school to re-evaluate the device he uses to communicate with. This is called an Augmentative and Alternative Communication (AAC) Device. Nick is 21 years old and has Down syndrome and autism.  The SETT meeting allows for team members to provide their unique perspectives of Nick.  The members included:

*Support teacher/Case Manager

*Speech and Occupational therapists

*Teaching assistant

*Parent

*Private speech therapist

*School District AT Specialist/Facilitator

These team members did a brain storming session about Nick, including his abilities, needs and concerns.  Here is a re-cap of the meeting notes and will put a lens on what Nick is like:

Student: Nick U.

*Comedian

photo (40)

*Likes to get reactions from people

*Wants to communicate

*Uses many modalities to communicate

*Has been talking more

*Holidays were stressful

*Old behaviors have resurfaced, but starting to

decrease again

*Thrives on routine

*Good at following directions

*Good worker

*Knows how to follow sequence of steps at jobs

Nick packaging door knobs_Habitat_4 (2)

*Wants to please

*Teases

*Visual schedule helps decrease his anxiety

*Gets frustrated when told “no”, if he’s not doing

something right, or if his AAC device is not

working

*Gets frustrated if he has difficulty manipulating

items

*Frustrated if he feels he isn’t being heard

*Changes in routine can be difficult

*Needs to understand why things are happening

*Goals at school include: requesting a break,

paying routine, cooking, grooming, commenting,

protesting

*Working on commenting about food and videos

with private SLP

*Loves cooking

IMG_8180

*Fake coughs on people and replicates sneezes to

get a reaction

*Trying to shape his sense of humor into more

appropriate behaviors

*Swipes things off the desk

*Prefers adult interactions

*Has some preferred peers

*Babies crying is a trigger for a meltdown – he

picks up on the emotion

*He’s a flirt – elbow bump

*Strong receptive language

*Likes to dance

020

*Great at sorting

*Does chores at home – dishwasher

*Has an older brother

022

* Loves community trips

*Taco Bell and movies with the respite worker

*Gets right out of bed on community days

*Very aware of his environments, especially fire

alarms

*Always scanning and scoping out the

environment

*Impulsive

*Likes loud buzzing noises (ex: lift buses,

microwave)

*Seeks sensory input – auditory input, likes to

watch things get poured

*Uses items to tap on his chin

*Loves music – big motivator

*Knows vocabulary on his talker when he’s

motivated

touch chat pic

*Used AAC device to order his meal, Sprite

This should give you a sense of Nick’s attributes.  Exploring a student’s abilities, needs and concerns is the first step in getting things in motion when looking at a communication device.

Next week, I will share the rest of the meeting notes which looks at his environment, tasks we want him to communicate, and what tools will be needed in a device that will be successful for Nick to use.  That’s what is in my noggin this week. 🙂 

~Teresa

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #113~Ready, SETT, Go!

Blog #113~Ready, SETT, Go!

Recently, we did a SETT meeting at Nick’s school to re-evaluate the device he uses to communicate with. This is called an Augmentative and Alternative Communication device (AAC). Nick is 21 years old and has Down syndrome and autism.

Nick with his private speech therapist…..

Brian and Nick

SETT is an acronym for Student, Environment, Task and Tools. The team gathers to ask key questions and get information that will help to pinpoint what technologies would best suit the student. Here are the areas the team looks at in a SETT meeting:

STUDENT

*What are the student’s current abilities?

*What are the student’s special needs?

*What are the functional areas of concern?

*What are the other students doing that this student needs to be able to do?

*What does the student need to be able to do that is difficult or impossible to accomplish independently at this time?

ENVIRONMENTS

*What activities take place in the environment?

*Where will the student participate—classroom, home, community, therapy?

*What is the physical arrangement?

*What activities do other students do that this student cannot currently participate in?

*What assistive technology does the student have access to or currently use?

TASKS

*What specific tasks occur in the environment?

*What activities are the student expected to do?

*What does success look like?

TOOLS

*Are the tools being considered on a continuum from no/low to high-tech?

*Are the tools student centered and task oriented and reflect the student’s current needs?

*Are tools being considered because of their features that are needed rather than brand names?

*What is the cognitive load required by the student to use the tool?

*What are the training requirements for the student, family and staff?

Ready set go

The SETT meeting allows for team members to provide their unique perspectives of Nick.  The members included:

*Support teacher/Case Manager

*Speech and Occupational therapists

*Teaching assistant

*Parent

*Private speech therapist

*School District AT Specialist/Facilitator

The brainstorming session is recorded on butcher paper. At the end of the meeting each team member puts a star on the three most important aspects of the communication device for Nick:

IMG_4318

The AT Specialist gathers up all the butcher paper and compiles the notes to share with the team. These notes enable the AT Specialist to hone in on what devices and speech programs would best suit Nick’s needs. The SETT meeting catches all the ideas of the team and guides them to make informed decisions regarding technologies for the student. Next week, I will share the compiled notes so you get a sense of Nick’s learning style, what motivates and what works best for him. That’s what is in my noggin this week. 🙂

~Teresa

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Speech and Occupational Therapy

Blog #69~Down Syndrome, Autism and Speech

Blog #69~Down Syndrome, Autism and Speech

I am often asked about Nick’s ability to produce words given the fact that he has Down syndrome and autism.  He does have a vocabulary including a few expletives that he picked up from us somewhere along the way. I find it interesting how he can say those words pitch perfectly.  This week I have a very special guest blogger.  Brian Sabella is Nick’s speech therapist and shares his perspective on working with Nick at Suburban Pediatric Therapies:  

Speech-Language Therapy and Nick

By Brian Sabella, CCC-SLP

I have been providing clinic-based speech-language therapy for Nick for over four years now. I feel fortunate for the experience for a couple reasons. First and foremost, he absolutely cracks me up—every week. There’s something about his brand of adolescent, slapstick humor that just resonates with me as a fellow male. Additionally, Nick’s family and support system are a pleasure to work with. They hold very high expectations of his communication abilities and understand communication takes other forms besides the spoken word. Nick uses a multifaceted system that includes spoken words, printed pictures, and electronic devices to communicate throughout his day. And as a speech therapist, I love it. For Nick, progress in “speech” means being able to communicate more effectively; it isn’t just about talking!

For those curious about the speech Nick does work on, here is a sample of some words we have practiced and continue to practice: help, Sprite, plate, shower, taco, pasta. With many of these words, Nick is not expected to articulate them exactly as you or I would, but rather, to produce them in a way that a listener would be more likely to understand. The idea is that Nick will probably be handing his conversational partner a picture of a taco anyway, so the spoken word is meant to enhance the communicative exchange. With this specific word, Nick will often produce aco, omitting the t. During our drill practice, I will call attention to my mouth and ask Nick to say it like I do, annunciating that missing t  sound and providing a visual cue (such as pointing near the area of my mouth where the sound is produced). After a correct production is established, Nick is encouraged to say it again a total of five times. Performing a high number of repetitions is always the best way to learn a new movement pattern, whether that movement is a golf swing, a pencil stroke, or a spoken word. Admittedly, speech drill is not one of Nick’s favorite things to do, so his good efforts are always rewarded with a bit of praise or even a small morsel of food.  You know, just to stay on his good side.

Most of my time spent with Nick in therapy hasn’t actually been focused on improving his speech. Some of it has. But I’m actually more concerned with improving Nick’s ability to communicate through other means. The reason for this is because, like many other individuals on the autism spectrum, Nick shows a strong preference for pictures.  He also presents with apraxia of speech, which further complicates matters. This is why at home and at school, Nick’s uses a picture exchange system that helps him communicate during everyday activities.

Teresa carries around with her a set of pictures of Nick’s favorite fast food restaurants.  When they are out running errands and it’s time for lunch, she shows Nick the pictures and he points to the logo of the restaurant he’s in the mood for. If he requests Taco Bell (which he usually does) he can then flip to a page that shows pictures of their menu items and he can indicate which ones he wants to order. Much of our time in speech therapy has been spent working on expanding his comprehension and use of these pictures.

photo (123)

Then there’s the Bored Board. As readers of this blog, you know that when Nick is bored, he finds ways of wreaking havoc in extremely creative ways. Picking up on these signs of boredom before Nick decides to dump fajita seasoning on the cat or spill an entire bottle of cooking oil on the floor will allow his parents to redirect these behaviors to something less destructive. The Board Bored shows Nick pictures of more appropriate objects and activities to request: DVDs, computer games, an iPod, a whoopee cushion, Flarp noise putty, a (fake) bloody Halloween hand, a sound effects toy that makes burping and glass-breaking sounds, etc.  Nick and I have spent hours working on requesting with the Bored Board so that he can more effectively use it in a time of need.

0916091611

Recently, our sessions have been focusing on having Nick formulate requests using “I want.”  We set up a board using an alternative-augmentative communication (AAC) iPad app called Proloquo2Go. It transforms the iPad, iPhone, or iPod Touch into a high-tech voice output device that helps a person communicate by typing or touching pictures. Nick’s screen displays a variety of preferred snacks and some phrases, including “I want.” Our goal was to have Nick indicate which snack he wanted by pressing “I want” then the snack item.  When he does this, the device speaks the sentence “I want popcorn;” I then reward him with some popcorn.  If Nick only touches the snack item without “I want” first, then I prompt him to press both.

Proloquo2Go

As you might imagine, producing these sentences was initially difficult for Nick.  But over time, he became very good at producing them.  This graph tracks his progress and shows that Nick went from almost always needing support to produce these “I want” requests to, after five sessions, almost always producing them independently.

Graph

As you can see, speech therapy is not always about speech.  For Nick, speech therapy is about helping him communicate effectively, even if it means doing so with pictures or electronic devices. With an alternative system of communication in place, Nick’s life is a little easier.  And his pets are a little safer, too.

Brian Sabella and Nick working at Suburban Pediatric Therapies 🙂 ……

Brian and Nick

Special thanks to Brian Sabella, CCC-SLP for sharing his insights this week.  For more about Suburban Pediatric Therapies check out their website at http://www.sptherapies.com.  As you can see there is much more to communication then just speaking words.  That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

Posted in Augmentative and Alternative Communication (AAC), Speech and Occupational Therapy

Blog #45~Can We Talk?

 

Blog#45~Can We Talk?

How does someone like Nick who has Down syndrome and autism communicate his needs and wants?  Let me start at the beginning.  When Nick was in the infant program he was taught sign language.  He would sign “more, all done, yes, no and other basic words.”  Using sign language gave him a voice when the low tone of having Down syndrome slowed up his speech.

When he was around 4 years old I began to snap photographs and put them on one of those blue school pocket charts.  These pictures included things he enjoyed like juice, Goldfish, Thomas the Train and Barney videos. These worked great and he understood all of them.

In first grade I requested an assessment to see if he would do better with an augmentative and alternative communication device. According to  About.com, Augmentative communication is an alternative way to help students and adults with language disorders use expressive language or receptive language. Augmentative communication can be accomplished through assistive technology devices such as computers or hand held devices. Low technology such as picture communication systems can also be used as augmentative communication.

The evaluator came out to the home to try some of the voice output devices with Nick.  He just stimmed on the devices,  hitting the buttons rapid fire like a DJ scratching a rap record.

Cat-DJ-Scratch-Set-1

The evaluator concluded that it would serve Nick better to use a low tech picture system to help him communicate.  She gave me a handful of laminated pictures (goldfish, chicken tenders, pasta, milk, juice and Coke.) They were like rare, gold coins that I treasured. (There was nothing like Google Images back when he was 6 years old.) You either had to snap photographs, cut out pictures out of magazines or beg for icons from the speech therapist. Note that around this time, Nick was also diagnosed with Verbal Apraxia of Speech which further complicated his ablility to articulate.  For years, Nick used pictures and sign language to communicate his needs.

Since Nick can’t read or write and his verbal skills are limited, he needs support.  What we learned is that someone like Nick who has autism tends to see things clearly with pictures.  If he can see it, he can understand it.  In fifth grade the school team was trained on how to use the PECS (Picture Exchange Communication System). There is a precise protocol to the system.  Once the protocol was followed, Nick made great strides in using the pictures to communicate wants and needs. He finally had a voice! 🙂

The cost of buying the software used by most schools is steep as well.  A Mayer-Johnson Boardmaker program can be $400-$800 dollars!  However, if you are a parent you can purchase these programs for 1/2 price. 🙂  Also if your CD gets damaged (aka, Nick dropping it from the second floor) they will replace it for no charge.  Check with your support teacher, as they should have access to this software and will make any laminated icons you might need for home use.  In addition, check with your local library and agencies like Easter Seals to see if they have it available to check out.

Most of the time Nick puts the pictures and icons on a velcro strip and hands it to the caregiver.  However sometimes he gets a little more creative. 🙂

“Hey Mom,  I’ve laid out my plan for what I want to do now”……..

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Poor Kitty, nap interrupted………..

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The next re-evaluation came in middle school.  The team decided to try Nick on a voice output device.  He was given a set amount time to just play and stim on it.  But then, he began to understand that the device was to be used to communicate.  There are all sizes and the cost for these can be thousands of dollars. Nick’s was around $8,000 dollars.  The Dynavox V was the Cadillac of AAC (Augmentative and Alternative Communication)  devices that would grow with Nick. This was provided by the school district. We found out later that the Dynavox V had major drawback.  It was that it was heavy and bulky.

Dynavox V or as we named it “The Brick”……

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After a few years with the Dynavox,  We looked into other devices that would be more portable and less obtrusive. We ditched the “Brick” and moved to an iPod touch loaded with a program called Touch Chat.  Another popular program is called Proloquo2Go.  I like Touch Chat because you can upload your own pictures as well as using theirs. Both programs are excellent. The iPod is protected and enhanced with sound using a case with speakers- (iMainGo Speaker case.)

imaingo case

In essence, it is an electronic version of his PECS communication book.  He still needs a lot of practice using it properly without stimming on it.  The jury is still out on whether this will take over as his primary means to communicate.

Touch chat screen….

touch chat pic

Finding the means to help Nick’s communicate continues to be a work in progress. If he is on the phone with you he might say hi and your name if he recognizes your voice.  But mostly he will smile and wave.

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He continues to use some verbal speech,  sign language, Pecs picture book and the iPod Touch Chat.  It’s like walking down the stairs.  Sometimes you need to hold onto the handrail and sometimes you don’t.   All of these communication methods are his handrail that support and facilitate his speech.

I have learned that there is no perfect way to help with speech.  All of these serve him and have their drawbacks.  It’s always good to have the backup PECS book in case the batteries die or the device goes for an unexpected dip in the pool. I hope this gives you some insight into the evolution of Nick’s way of talking through the years.  That’s what is in my noggin this week.

~Teresa 🙂