Milestones Magazine - Summer 2019

celebratepotential51

Helping individuals with disabilities and their families achieve and celebrate events and milestones in their lives.

eyond disabilities

Summer Issue 2019

Articles

Sink or Swim

Run Down of Swim

Lesson Businesses

My First Job

Even with a Disability

Working and Earning

Money is Better

Than Not Working

Just to Collect

Government Benefits

The Family Vacation

Traveling with a

Special Needs Child

Can be Challenging


CONTENTS

Inside

Parent of Young Children

Milestones and Beyond - page 3

Fly on the Wall Counseling

The Language Barrier - page 5

Guiding a Child Through the Language Barrier

Preschool / School Age

Won’t You Be My Friend? - page 7

Social Skills Classes and Cues

Meltdown in Aisle 5 - page 9

ShopXplore Activity Sets

Please Come to My Party! - page 12

Party Planning Advice

The Family Vacation - page 14

Traveling with a Special Needs Child

Can be Challenging

Teen / Adult

Mom, Can I Use the Car Tonight? - page 17

Marianjoy Driver Rehabilitation Program

My First Job - page 20

Even with a Disability Working and Earning

Money is Better Than Not Working Just to

Collect Government Benefits

It’s My Money! - page 23

The ABLE Act

All Ages

Go to Sleep! - page 25

Everyone Needs a Goodnight’s Sleep

Sink or Swim - page 27

Run Down of Swim Lesson Businesses

1


Milestones and Beyond

Just about all parents have a time or two where they are

concerned whether their child is reaching a developmental

milestone within the normal range. My child is not walking or

talking as early as his cousin; my child is nearly 4 years old and not

even close to being fully toilet trained. Is that normal? Conditions

such as Downs Syndrome or Cerebral Palsy; and the development

delays that result are pretty evident. Other delays are harder to

detect and diagnose; particularly with very young children. Many

doctors recommend a wait and see approach, but this could

delay critical early intervention. So, what’s a parent to do?

Milestones Magazine has the pleasure of introducing Jillian

Newkirk, of Fly on the Wall Counseling, who has created a free

online developmental assessment for parents. While this tool is

not meant to diagnose conditions such as Autism, Anxiety,

Depression, and Attention Deficit Disorder, it can help parents

decide if something might be off with their child that needs

further attention. So, without further ado, I bring you Jillian.

“My name is Jillian Newkirk, I am a Licensed Clinical Professional

with a passion to provide convenient, quality online counseling

and coaching services to busy parents and children. I founded

Fly on the Wall Counseling to equip parents to confidently

manage their children’s challenging behaviors and emotions.

My clinical experience has led me to be an expert in working

with children with behavior and mood disorders and their

families. I also work with parents whose children have not

received any diagnosis, but need additional support and want

to feel confident in their parenting. My sessions are conducted

via HIPAA compliant video conferencing, so that, I am able to

provide a convenient service to busy parents, easily and

provide less intimidating services to children who struggle

with in-person therapy/counseling. I have been able to see

significant changes and growth in my clients by implementing

customized therapeutic and psychoeducational strategies and

interventions that uniquely fit their family’s presenting concerns,

needs, values, and goals.

3


Googling for help is simply not enough, and

traditional mental healthcare services often

have too many barriers to make continuous

services accessible. Beyond that, it can take years

to see progress in child therapy. I have found that

working with the parents leads to more effective

and efficient, lasting change that parents desire.

There is a large gap between Google and

traditional mental health, and I am looking to

bridge that gap to provide the support and care

parents deserve and desire. That is one reason

why I created my free assessment tool: Red Flag

Behavior Assessment Tool (Click to access now!).

I know that many parents are wondering if their

child’s behavior is normal or something that

needs to be addressed. Many are wondering if

their child has a mental/behavioral/emotion

“My clinical experience

has led me to be an expert

health disorder, but don’t want to spend 100s or

1000s of dollars to find out… especially if their

child does not meet criteria for a diagnosis!

Google searches make you think your child has

in working with children

with behavior and

mood disorders and

every diagnosis under the sun and only leaves

you with more questions and concerns. This free

assessment tool fills in the gap. Hundreds families

have already benefited from this tool, receiving

individualized results. No two children are alike, so

their families.”

I make sure to personally analyze each assessment

and provide uniquely tailored responses to every

person that fills one out. You deserve clarity! Also

feel free to visit my website to learn more about

what I do, my clients’ successes, and my heart!”

www.FlyOnTheWallCounseling.com

M

4


THE LANGUAGE BARRIER

PARENTS TOP 3

For the

DEVELOPMENTAL MILESTONES

in the FIRST YEARS of their CHILDREN’s lives

are talking, walking, and toileting independently.

Parents often worry whether their child is “late” developmentally

and may compare their child to a relative’s or friend’s child who seemed

to walk or talk practically from birth (at least according to his or her parents).

Although much of this concern may turn out to be unfounded for individual children;

reassurance from doctors and others that a child “will talk/walk when they are ready”

isn’t always good enough either. Parents usually have a good sense of when

there could be a real problem.

When my younger son was a toddler, “early intervention” wasn’t available.

He made his frustration with his communication difficulties known by shrieking;

often and loudly. One day, his older brother read to him a 79 cent Golden

Book we had just bought “My First Book of Animal Sounds”.

5


I still don’t know exactly how it worked, but it did. My son got the

connection between the words and the animal sounds; and the language

barrier was broken! Soon to follow were requests for pizza and other foods,

various toys, and so on.

However, while parents play a crucial role in a child’s learning to talk;

professionals are sometimes needed to lend a hand in the process. There are

a variety of therapies and techniques available, according to the reason(s)

for the developmental lag. One type of therapy, called ABA (Applied

Behavioral Analysis) can be used with children with sensory or cognitive

challenges such as Autism. I am pleased to introduce my friend Stacie Green,

who works as an ABA therapist and is currently guiding a 3-year old client

towards and through the language barrier. So, without further ado (please

forgive the cliché) I introduce Stacie, who will write about her experiences

with her young client.

“It has been almost a year now since I started working with my 3-year

old client. When I first began working with him, he said no words at all.

We were at the very beginning stages of using PECS (picture exchange

communication system) to help him communicate his wants and his needs

to us, and his family. He could make sounds, and he would engage in many

problem behaviors to try and get his point across to us.

After we introduced PECS to him, and were consistently using this

method, he learned the basics of how to use it to tell us what he wanted/

needed. Soon after PECS was introduced to him however, he started to say

a couple words. I was thrilled to see this. I went with it and worked on those

words, as well as other words and everyone else did as well to assist in

expanding his vocabulary. I used every opportunity I could to teach him

words for certain things. Especially the ones in his environment, and the

ones that would mean the most to him right now. Those we all felt, were

the most important for us to work on with him.

As of right now, my client has a vocabulary of about 10-15 words, and he

has begun to put 2 words together such as “more please”, “more juice” etc.

It has been amazing to see this happen, and to be a part of it. It has been a

very rewarding experience/job as well.”

Contributor Stacie Green can be reached at Positive Behavioral Connections,

630-842-5689. She is an ABA Therapist, RBT-18-48188 M

6


Won’t

you

be my

Friend?

The title of this article paraphrases

Fred Roger’s tag line (his ended

with neighbor), which I think is

appropriate in regard to a man

who understood every child has

worth, wants to belong, and wants

friends. A child’s making their first

true friend is (or can be) one of the

milestones in that child’s life.

Making and keeping friends is

challenging, and children who

have difficulty with social skills

(whether or not they have an

identified disability) have an

especially hard time with this.

7


There are a variety of things that

public and private schools do to

help students and parents meet

this challenge. Social stories and

social skills classes are common

methods used with children

and families.

Little Friends offers 6-week

sessions, with each session

lasting 45-60 minutes, for different

age group including preschool,

elementary school, middle school,

and teen/young adult. Activities

and techniques are age

appropriate, focusing on social

Social skills classes/programs

are typically offered in public

schools to special education

behavior, taking turns, and (with

teens/young adults), interacting in

community settings.

students as part of their

Individualized Education Program

Little Friends is located at

(IEP). Private and/or non-profit

140 N. Wright St in Naperville IL

organizations offer classes as well.

60540, 630-305-4196. They

One such organization, located in

can be visited online at

the Chicago area, is Little Friends

www.littlefriendsinc.org and

Center for Autism.

emailed at info@lilfriends.com. M

8


MELTDOWN

INAisle5

While it’s unlikely that a “Meltdown in Aisle 5”

announcement has ever actually been made on a grocery

store’s loudspeaker, it very likely has occurred (maybe not in

this particular aisle, but somewhere in the store) for families

with young children, particularly those who have sensory

issues. Just being able to get through an errand to the grocery

store without incident is a milestone for many families who

have children with challenges.

To address this, I am pleased to introduce Tarryl Zdansky,

a mother of two special needs young adults, who found out,

during her experience working in retail settings, that many

people (not just “special needs”) had less than optimal

shopping experiences. She set out to do something about it,

taking her ShopXplore idea to her manager in the hopes of

offering shopping lists to the customers. The manager agreed

that the shopping lists would be beneficial to the customers

for educational purposes as well as for sensory issues.

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Some of the comments received were from people asking for schedules

for other activities and others wanted their schedule made before

entering the store. That is when Tarryl’s Teaching Tools began. Tarryl

wanted to make a bag that would keep task cards organized in one place

and personalize the bag handles with a name. With the ShopXplore

Activity Sets designed by her business Tarryl’s Teaching Tools, Tarryl

offers personalized schedules and convenient bag with colorful photo/

word cards to help children and adults focus on their community, home,

and school activities.

I now turn this article over to Tarryl to further describe the ShopXplore

Activity sets and tell you how they help children and adults get through

a shopping trip with purpose, focus, and most importantly, a sense

of calm.

“Have you ever walked into a

grocery store and the noise was

just so loud that you feel as

though you cannot think or that

the lights are so bright that you

felt like you need sunglasses? All

of the overwhelming amounts of

product can be mind boggling,

needless to say, to anyone and if the store is crowded, well you just want

to run out of those big doors and try again on another day. Our senses of

vision and smell can get overstimulated by all of the colors clustered

together in a store as well as the many odors of produce, meats, seafood,

and bakery, and prepared foods. Making your way through the store

may be effortless for some, but for others the task can be a daunting one.

A shopping list consisting of each item you will need to shop for

is an ideal method to keep your focus targeted on finding those

particular items in the store. If the focus is on each particular step of

your shopping trip (enter to exit), it may help the shopper (and assistant)

get through the store in a timely manner while also preventing an

outburst. Each person is unique in their own way and we wanted to help

a variety of abilities within all ages. Using a combination of colorful

photos and words, the ShopXplore Activity Sets make up a three-tier

system to help a wide range of learners. The ShopXplore Activity sets

were designed by Tarryl’s Teaching Tools to help individuals achieve

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their goals within the community, home, and school by listing each task

within an activity. We like to refer to them as schedules for your life.

ShopXplore Activity Sets consist of a bag with loop fastener tape on

both sides of the bag for easy access and a center pocket. The bag

handle has hook and loop fastener tape so that the bag can connect to a

grocery cart or any convenient location. Laminated task cards with hook

fastener tape are able to connect to the front and back of the bag. Each

activity category will have photos only (for the beginning stages of

getting familiar with the item), photos with words (for those ready to

match the word with the item), and word only (for those learning to

read). Once the user finds an item on their shopping list, they will put

the laminated card into the center pocket, then move on to the next item

until all are completed. You did it!!!”

Tarryl Zdansky is a Mom with 2 special needs children creating

vocational experiences for individuals with special needs. Her business

can be found online at https://tarrylsteachingtools.com

and she can be messaged through the website. M

11


Please

COME

to my

PARTY!

For many people, particularly children, birthdays represent an important

milestone that comes around every year, rain or shine. Parents and

children often celebrate that annual milestone with a party, whether

at home or at a public setting of some kind.

For any child, a birthday party can turn out to be a disaster or at least

a disappointment when:

1. The place picked for the party turns out to be too noisy, too dirty, etc.

2. Few, if any, families respond positively to the invitation.

3. Few, if any, of families who did say yes actually show up.

For children with sensory, physical, cognitive, or other challenges, birthday

parties that don’t turn out as hoped for, can be even a more commonplace

occurrence than for their “neuro-typical” peers. As a resource to help

parents overcome this challenge, I am pleased to introduce Susan Noble,

operator of Blessed Events-The Gift of Giving; to provide some practical

advice and assistance in party planning for children with challenges.

“When doing my research on planning birthday parties for children with

special needs I found these tips to be the most successful. All children

want to be included and should be and that is no exception for children

with special needs.

When planning a birthday party for a child with special needs always

discuss with the parents what the child may require, what their do’s

and don’ts are.

Is the home or place of venue accessible for a special-needs child?

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Is it wheelchair accessible?

What will your activities consist of? Will they fit the needs of all your guests?

Make sure you explain to the children what is going to happen so that they

are not caught by surprise.

Children with or without special needs can sometimes be overwhelmed

when everyone sings Happy Birthday by having an activity in another part

of the room it can and will be a good distraction helping to lower the stress.

Sensory activities are a must for special needs children and you will find

even those children without special needs will enjoy them and want to join

in on all the fun.

Most important is knowing the dietary needs of each child attending. I

always ask the parents: are there any allergies, are there any children who

need gluten free, do any of the children have a peanut allergy? You must

know what they can and cannot have.

I can be reached at contact4info@blessedeventsparties.com. We service

the Chicagoland area and also provides DIY Birthday Blessings in a box for

those out of area. 50% of our party proceeds goes to benefit the Epilepsy

Warriors Foundation. www.epilepsywarriors.org Blessed Events-The Gift of

Giving was started as a way to help raise funding for the foundation for our

Warrior Ambassador families but also to help with foundation expenses.

Everyday is a reason to celebrate.” M

13


the Family Vacation

Travel, whether it’s for a vacation or to attend a family event out-of-town, can

be stressful at times in the best of circumstances. And when you add in the

sensory or physical challenges or behaviors of a child with disabilities, it can

be downright daunting. Fortunately, there is help from travel specialists who

understand the challenges you’re facing because they face them as well.

One of these travel specialists is Sarah Marshall of TravelAble, LLC, who will

introduce herself and give a couple of practical tips that will help keep your

travel plans from being nothing more than a fantasy! Welcome, Sarah!

Thanks Susie! Yes, I am a travel specialist and I do plan trips for families with

special needs. My goal is to empower every family to live adventurously. And

what does that mean? Temple Grandin once said that “the mos important

thing people did for [her] was to introduce [her] to new things.” I believe that

when we push our children out of their comfort zones and cultivate a sense

of exploration and adventure, great things can happen. My expertise comes

from the fact that my beautiful son, Aidan, has had a long journey and that

journey has taken place all over the world. We’ve found the more we

challenge him to live outside our self-imposed routine, the less severe

his behaviors are.

However, our living adventurously hasn’t always been sunshine and roses.

There have been meltdowns in museums; getting sick all over 5-star

restaurants; days spent in the hotel when I wanted to be outside. But

none of these memories have kept me from trying again. They have never

stopped me from continuing to book that trip. Mostly because while these

memories may be “negative,” they didn’t define the vacation. They didn’t

make me forget the smile on his face when he saw something awesome,

or when he made it to the top of the mountain.

There are 3 tips I always give those anxious about traveling with special

needs children that have helped our family to travel successfully.

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1. Manage Your Expectations: When we first book that adventure, we are often

swayed by the images we see in the brochure – glossy, sunshine-filled, where

the family lays on the beach on matching towels, the parents drinking slushy

wine drinks out of coconuts. But our reality is very different. If we set our

expectations based on the dream, when it doesn’t happen that way, we may

get disappointed, angry, and resentful, and often we claim the vacation was

a failure. We expect the vacation to go as we imagined, when in fact, if we

expect things will happen, we can plan for the eventuality and save ourselves

the disappointment.

Here’s an example of how to manage expectations. We planned a week-long road

trip in Italy, hitting all the major cities in a very short amount of time. Since it was

a rather expensive trip, and it was our first time, we decided we wanted to fit in as

much sightseeing as possible. For me, that meant going to all the museums. And

what *better* (note the sarcasm) place to take a fidgety autistic child than to

multiple fine art museums! Rather than assuming we could just walk into the

museums and he would be magically transformed into a child that loved fine art

and wanted to chat about it, we reframed our expectations. We knew he wouldn’t

do well and that he did better when he had time to play on a playground or just

walk around, so we decided to only go to the museums that were within or next to

public parks. We would go to the park and one of the adults would stay behind

while the other went to the museum, and then we would swap. Was it ideal? No,

but we both got to see the museum, and Aidan could stay in the park and play

and would remain content. All of our goals were met.

In Rome, we passed the time before our museum tickets by riding family tandem

bikes around Villa Borghese. When it came time for our museum entrance, Aidan

was so engaged with us as a family that he asked to come to the museum too.

And he walked around the art pleasantly and without fuss. This exceeded our

expectations and made for a nice family outing. But by managing our expectations,

we had the ability to be prepared for any eventuality.

2. Ask for Help: It never hurts to ask for help. Sometimes, I feel awkward asking

strangers for assistance, but when I do, it always turns out well. First, in the

airport, utilize TSA Cares to help get your family through security. TSA Cares is

a helpline that provides travelers with disabilities, medical conditions and other

special circumstances additional assistance during the security screening

process. You can call them at (855) 787-2227 to get everything set up. On the

plane, if you need extra time boarding, it never hurts to ask the gate agents if

15


you can be included in the pre-boarding, no matter how old your child is.

Mention that it will help your child to have a more successful flight if you can

have a little extra time before everyone gets on. If they say no, that’s okay, but if

you don’t ask, you’ll never know!

The most important thing when asking is to be polite and grateful. When Aidan and

I had to bail on a food tour because he got sick, I was very polite and thankful to

the host for helping us get a taxi back to the hotel. She went ahead and put in a

refund for us even without my asking, and because I was very polite. If I had let my

emotions go to my head, and I was angry at the situation, likely I wouldn’t

have gotten the same result. It doesn’t hurt to be nice!

3. Prepare, Prepare, Prepare: The last tip I always give is to prepare and prepare

and prepare again. With Aidan, we traveled with a Nutribullet blender in our

suitcase to be able to prepare pureed foods he would eat wherever we went.

We carried plastic bowls and Gerber spoons to ensure his food was served

familiarly. One way we’ve always prepared Aidan for a new place is through

social stories, either self-created, or buying a book and reading it repeatedly.

Planes now allow tablets to be on during taxi and takeoff, meaning your child

can have a tablet from the moment they get on the plane until they get off. If

they are calmed by tablets, pre-load movies, shows, or games they can play

without Wi-Fi on the plane and let them have it! The time to limit electronics

is not then!!

This last tip is something I can definitely help with as a travel planner for special

needs families. I contact hotels to make arrangements, I find restaurants that can

accommodate dietary restrictions, I create itineraries that build in down time just

in case. I can create social stories, and help decide on destinations. When you

prepare and prepare again, you are ready for anything that could happen and if

something happens that you haven’t prepared for, it doesn’t seem that bad

because you’ve prepared for everything else.

Having an adventurous spirit is something that defines special needs parents.

We are committed to helping our children succeed, thinking outside the box, and

fighting hard for what we need. When you actually live adventurously, and step

outside your comfort zone as a family, you will reap many rewards, and I am here

to tell you it is possible and there is a lot of support out there if you need it!

Sarah Marshall lives in the Naperville IL area. She can be contacted by

email: info@travelablevacations.com. M

16


Mom, Can I Use the Car Tonight?

One of the milestones for most teens is getting their driver’s license.

This rite of passage, while an unrealistic goal at best for some individuals

with special needs, is a possibility, even a likelihood, for others; with

the right help to compensate for their physical, cognitive, or fine motor

skill deficits.

For many of us, driving is a symbol of independence. That skill can lead

to education and employment opportunities, more easily get to medical

appointments, and connect with family and friends. Being an independent

driver is something that nearly everyone desires. As parents, we want our

children to be as independent as possible. Being an independent driver

is also a huge responsibility. When we enter the roadway, we have a

responsibility for both the safety of ourselves and other roadway users.

When our child asks us, “Can I drive?” there clearly is much to consider.

When there is uncertainty, consulting your child’s care team as well as

the experts at the Marianjoy Driver Rehabilitation program is key.

The Marianjoy Driver Rehabilitation program starts with an evaluation.

It has two parts: a clinical evaluation (in an office setting, assessing the

skill components of the driving task) and behind the wheel evaluation

(in an actual Driver’s Ed car, assessing the driving task). The duration of

17


the evaluation is typically 2 ½ hours. During the clinical

evaluation, we use evidence-based assessments to

the teaching of Driver’s Education. Outlined below

are only some examples.

look at vision, visual perception, cognition, and

motor skills. We also have a discussion with the new

driver and the parent about the new driver’s functional

skills. How much help does she need getting ready for

school/work? Is she allowed to be home alone for

several hours? Any safety concerns? Any prior

experience driving a car? Riding a bike?

There is a wide range of adaptive equipment available

for drivers with physical disabilities. We may be

introducing adaptive equipment to compensate for

decreased strength or range of motion. For example,

a person with left sided weakness may have difficulty

using her left hand to steer or reach the turn signal

lever. This person may benefit from a right sided

Then, we assess that student’s abilities behind the

wheel (BTW). Most of our students do not have any

prior experience driving a car. We understand that!

We take them driving on the Marianjoy campus, 60+

acres of private property with limited traffic. We are

assessing if there is improvement over time with

instruction. We are looking for potential.

spinner knob and a turn signal crossover, so she can

use her right hand for these actions. Adaptive driving

equipment can range from simple or “low tech” options

as above to very complex or “high tech” (electronic

systems, driving with joysticks). The driver rehab

specialists would guide the student and family through

the entire process of becoming licensed with adaptive

equipment (including modification of a personal

Based on the performance on the clinical and BTW

evaluations, the therapist will make recommendations.

Examples of recommendations may be: pursue driving

through a “typical” driving school, return for training

at a driver rehabilitation program such as Marianjoy’s,

or do not pursue driving right now. If the recommendation

is that the student does not pursue driving, the

vehicle that meets industry standards). Information on

this process can also be found at www.aded.net and

www.nmeda.org. Many newer vehicles are equipped

with additional technology to help drivers, such as

backup cameras and blind spot detection systems.

Drivers with and without physical disabilities may

benefit from such features.

therapist will work with the student and parent to

construct a home program. In other words, here are

activities that will help prepare the student to

potentially be a driver one day.

For drivers with intellectual disabilities or cognitive

involvement, it is important to adapt how driving is

instructed. During the evaluation, the driver rehab

specialist will inquire about and identify how the

At Marianjoy, all the staff are occupational therapists

(OTs), who have additional extensive training regarding

driving (all are Certified Driving Instructors and 4/6

are Certified Driver Rehabilitation Specialists). OTs are

skilled in task analysis. In other words, breaking down

the task into various skill components. This allows OTs

to better adapt the driving task for people with various

types of disabilities (physical, cognitive, and/or visual).

There are many ways to adapt both the vehicle and

student learns best. For example, students on the

Autism Spectrum may benefit more from instruction

with visual materials as compared to only using verbal

directions. Some students will have difficulty managing

multiple processes at the same time and benefit from

isolating one skill at a time. For example, starting out

with the student only being responsible for steering

and lane positioning. Some students with processing

differences also benefit from commentary driving.

18


determination to become a driver must come from

the student—not just the parent. The process of

working towards the student’s driving goal can be a

significant undertaking and relies on the collaboration

of the student, parent, and therapist. Here are some

questions to ask yourself when considering if

your child is ready.

1. Does he want to become a driver?

2. Can he verbalize a few realistic driving goals?

With this activity, the student is encouraged to speak

aloud what he is seeing (pertinent signs, potential

hazards) and verbalize what he plans to do. “I see the

pedestrian crossing sign ahead. I am going to slow

down. I’m looking. There are no pedestrians so I am

going to keep driving.” The driver rehab specialist

works with the driver to maximize his potential.

Some drivers have visual disabilities. If the driver meets

the state vision requirements for driving, she may be

a candidate to be a driver. The driver rehab specialist

works with the driver to teach compensatory strategies

and use of visual aids. Visual aids may include devices

such as additional mirrors, different tints, special visors,

etc. Some people are candidates to use Bioptic

telescope lenses. The person’s vision specialist can

determine if she is a candidate for such specialized

lenses. These lenses are like small magnifiers which

sit on top of the person’s normal glasses. They allow

3. Can he cross a busy street safely and independently?

4. Is he allowed to be home alone for a few hours?

5. Does he (and do you) have the time, at this point,

to commit to practicing regularly?

Here at the Marianjoy Driver Rehabilitation Program,

we are passionate about supporting people with

disabilities in meeting their driving goals. Please

contact us if you have any questions regarding the

program or if your child is ready to pursue driving.

Nicole Thonn, an Occupational Therapist and Certified

Driver Rehab Specialist at Marianjoy Rehabilitation

Hospital, works to help individuals with special needs

move towards this major step towards independence.

She sees people who have various physical, cognitive,

and visual disabilities, evaluates their driving potential;

and for individuals she believes can become safe

drivers, she will develop a plan that should lead to

that person attaining a driver’s license.

the person to identify potential hazards sooner,

read roadway signs, or even identify the color of

the traffic light sooner. The driver rehab specialist

works with the person with visual disabilities to

introduce adaptive equipment and teach

compensatory strategies.

Nicole Thonn, Occupational Therapist,

Certified Driver Rehab Specialist

Driver Rehabilitation, Marianjoy Rehabilitation Hospital

26W171 Roosevelt Road

Wheaton, Illinois 60187

630.909.6084 office

Additionally, here are further points to consider.

Setting realistic goals is vital for the success of the

630.909.6081 fax

nicole.thonn@nm.org

driver. For some drivers, the goal may be to drive to a

few familiar places. Being able to drive independently

Special note: This article is intended for informational

to even a few places can change someone’s life.

Motivation is also necessary for success. The

purposes only.

M

19


MY FIRST JOB

My older son’s first job was at a seasonal pop-up toy store at a local mall.

The store was called “All Wound Up” (which we privately and not so

jokingly referred to as “All Screwed Up”). His second job was a

summer position as help desk at a computer lab at a local college.

His next gigs were at fast food joints. He eventually ended up going

for a Master’s Degree, and landed a career-track civilian job at the

National Security Agency (NSA) in the Baltimore /

Washington D.C. area.

My younger son’s trajectory was quite different. He has autism and

some cognitive impairment. While in school, he had a handful of

training opportunities, mostly involving recycling at his school and

other district schools to which he was transported. The vocational

coordinator’s assessment of his abilities was that he can succeed at a

volunteer job with maximum support. His only real work experience is

as “team member” at a greenhouse whose mission is to provide job

training for people with disabilities. He has a weekly shift there and I am

his volunteer job coach. Each family pays a monthly fee, of which roughly

half comes back to the worker as minimum wage for about 10 hours of work

per month.

For many teens and college age adults, their first job is a milestone; providing

them an income, independence, and a starting taste of adult life. For many

people, there are sometimes obstacles to getting and/or keeping that job (or

subsequent jobs). However, as my son’s experiences show, for people with

challenges, those difficulties are often compounded, resulting in an

unemployment rate that can approach 80% (or higher).

In addition, even when a suitable job is available, there are often reservations

about taking it due to the effects, real or perceived, that the income can

have on government benefit programs for which the individual qualifies;

specifically: Medicaid and/or the Social Security program Supplemental

Security Income (SSI).

To speak (o.k., write) to this point, I am pleased to introduce Alexandra Baig,

a financial planner who specializes in working with families and individuals

with disabilities. Here is a recent blog post of hers on the subject.

“In the novel “The Adventures of Tom Sawyer,” the protagonist tricks his

friends into doing a large chore for him for free. The story does not recount

whether the boys who did the work remained his friend when they

20


ealized they had been duped. I’m thinking they

must have been at least a little peeved.

Who wants to work for free?

I was at a transition planning committee meeting

the other day. One of the presenters who works

for Gigi’s Playhouse (check it out at

https://gigisplayhouse.org) mentioned in

passing that some people who attend Gigi’s

employment readiness programs don’t want paid

work for fear that it will disrupt their benefits. I

always feel a bit sad when I hear that because 1) it’s not true and 2) who among us

who is not independently wealth would settle for primary employment that does not

pay? I should note here that Gigi’s is a strong proponent of paid work.

I’ve said this before, but it bears repeating. A lot. People with disabilities are

almost always better off working and earning money than not. Here’s an

example using Supplemental Security Income (SSI), which is the first benefit for

which a person with a disability usually qualifies. SSI is means-tested, which is a

more palatable way of saying it is welfare. You don’t have to contribute anything

in Social Security tax to get it. If you have a disability, you just have to be poor.

Which means you can’t have too much money in the bank and you cannot earn

too much. But there is nothing in the rules that says you cannot earn at all. And

since a worker only loses fifty cents of SSI for every dollar s/he earns, the worker

still has more money. Let’s do the numbers.

Clara receives SSI. Since she pays her parent’s room-and-board (that’s a different

topic), she receives the full amount of $750 a month. But she’s bored and she’d

like to have additional funds. Her parent’s help her to find a part time job at the

neighborhood café. She works 15 hours a week at $10/hour. Now she’s earning

$600 a month. The first $85 do not count when Social Security calculates her SSI.

Of the remaining $515, half or $257.5 does not count. The remaining $257.5 —

let’s round up to $258 — is deducted from her SSI benefit. So:

Before: Total income = SSI = $750/month

After:

Total income = SSI + wages = $492 + $600 = $1,092/month

In addition to having over $300 of additional disposable income, Clara also has

new experiences, a chance to learn new skills, co-workers and a way to use her

talents. Since she is paying Social Security tax from her paycheck, she also has a

way to earn Social Security credits towards retirement benefits and, in the kind of

circular logic you might expect from a government program that evolved through

over time through many different administrations, credits towards disability

benefits. Yes, you can start work with a disability and earn enough credits so

that you go on Social Security Disability Insurance (SSDI) from your own work.

You earn one credit for every $1,320 in gross work income (2018). You can earn a

21


maximum of 4 credits/year. How many credits

you need to get SSDI depends on your age. You

can find a more detailed discussion here:

https://www.ssa.gov/planners/credits.html.

Let’s say that Clara, who is 21, goes on to earn 6

credits by the time she is 24. She now qualifies

for SSDI on her own work record. SSDI is based

on her work history, which is short, so she only

qualifies for $200/month to start with. Because

her SSDI benefit is lower than her SSI benefit,

she continues to get the SSI, although it is

reduced dollar for dollar for the amount of SSDI

after $20. Her work income continues to reduce

her SSI by 50 cents for every dollar over $65. So, her SSI benefit is reduced

by $180 due to the SSDI and then by $268 due to working. So now, her

income looks like this:

Before: Total income = SSI = $750/month

After: Total income = SSI + SSDI + wages = $302 + 200 + 600 = $1,102

Now, let’s say that Clara continues to develop at her job. Now, she is

working 2 hours a week and earning $1,000/month. Her SSDI benefit,

which grows as she accumulates higher earning years, is now $300. Of this,

she gets to keep $20. The remaining $280 reduces her SSI benefit to $470.

She gets to keep the first $65 of her work earnings. Half of here remaining

income — $935/2 = $468 — counts against her remaining SSI. So now, the

picture looks like this.

Before: Total income = SSI = $750/month

After: Total income = SSI + SSDI + wages = $2 + $300 + $1,000 = $1,302

One of the criteria for “having a disability” according to Social Security, is

the inability to earn more than $1,180/month (2018). As long as Clara earns

below that threshold (which is indexed almost yearly), she can continue to

receive her full SSDI benefit and keep all of her work earnings. If she

believes she has the capacity to earn more than that on an ongoing basis, she

may want to risk crossing the line and going off benefit, knowing that she

can go back on is, due to her disability, she finds herself unable to sustain

earning at that level. That, however, is a discussion for another day. Beyond

a doubt though, it is better to work for pay than not.”

Contributor Alexandra Conroy Baig, MBA, CFP® can be reached by phone

at 773-297-1556 and email at alexandra@companionsonyourjourney.com.

She maintains a website, www.companionsonyourjourney.com, providing

Special Needs Expertise for families and professionals. M

22


IT’S MY MONEY!

“earning

one’s own

INCOME

is the

basis for

FINANCIAL

independence

Along with the milestone of a person’s first job, earning one’s own income

is the basis of financial independence. That independence comes with

decision making, like figuring out how to spend, save, and invest. People

on benefits for disabilities have long been effectively denied the self-direction

and advocacy most people attain. But times they are a changing (finally)

with recent Congressional passage, of the A Better Life Experience or

ABLE act of 2014. ABLE allows people with disabilities and their families

to maintain a tax-free account offering self-directed checking and

longer-term investment options.

Oh, what a feeling! But how, exactly does the program work? I recently had

the pleasure of speaking with financial planner Nancy Roach-Wilder to gain

a high-level view of the account. As we have both read, the ABLE account,


modeled after the College Savings 529 account, is not an end-all be-all.

On the plus side, the main benefits of an ABLE are: It can provide for

supplemental needs without the expense of a separate Special Needs Trust.

ABLE accounts harbor assets from the second day they are opened, as

opposed to the look back provisions of other types of trusts. The allowed

savings are much higher (differing by state) than the $2000 limit set to

continue to qualify for SSI and Medicaid benefits. The ABLE account can

prevent unexpected incomes, like unplanned inheritances or legal

settlements, within limits, from interrupting eligibility for SSI and Medicaid.

The ABLE account has tax preferred features, when the money is spent

for qualified expenses relating to the person’s disability.

Allowed expenses broadly include education, housing, transportation,

employment training and support, assistive technology, personal support

services, health, prevention & wellness, financial management and

administrative services, legal fees, funeral and burial expenses and basic

living expenses.

23


Opening an ABLE account is easy, it can online or by calling a toll-free

number. The account has a fixed option (checking account) and investment

options (similar to 529 accounts). Each provider state selects professional

money management for their plan.

On the cautionary side, ABLE is not a complete panacea. Each family

presents a different set of needs and circumstances. There are limitations

in some situations. Those with sizeable legal settlements, for example,

intended for life-long care of a profoundly disabled person might be better

served with a pay-back special needs trust. For others, allowing the balance

to grow over $100,000 can result in taxation, and can count against

government asset limits. Meaning, Medicaid can put a hold on benefits

until the account is back under $100,000. Most ABLE accounts allow a

government lien, at the death of the beneficiary, to the extent of government

benefits received. So, one might consider the spending needs of the

participant before depositing large sums to the account.

Another significant caveat is that the initial owner and beneficiary must be

an adult, who was diagnosed disabled before their 26th birthday.

So, if you are considering an ABLE account, go to your states website and

review the available plan and its features. If you live in a state that does not

directly sponsor and ABLE, you can choose another state’s plan. A few states

have put the Medicaid payback on hold. For links to state programs and

detailed information, visit website www.ablenrc.org.

Thanks again to Nancy Roach-Wilder, CFP® and CHSNC for her overview

of the ABLE account. In her own words:

Ms. Roach-Wilder has over 30 years of experience as a financial advisor.

As a Certified Financial Planner CFP® and a Chartered Special Needs

Consultant (ChSNC) through the American College of Financial Planning

she offers public education and family guidance on issues that are

important to you. While being a special needs parent helps her identify

with client needs, the additional training she has taken sets her apart, when

it comes to implementation of strategies with the potential to enhance your

stability and harmony at home.

Nancy Roach-Wilder

CFP®, ChSNC

Certified Financial Planner

Note: Nancy Roach offers financial planning and investment advisory services

through Pruco Securities, LLC (Pruco), doing business as Prudential Financial

Planning Services (PFPS), pursuant to separate client agreement. Offering

insurance and securities products and services as a registered representative

of Pruco, and an agent of issuing insurance companies. 1-800-201-6690.

Prudential Advisors

Chartered Special

Needs Consultant

1901 Butterfield Road

Suite 250

Special Note: J.J. Hanley (who some of you may know from Hanley’s list)

is the director of IL ABLE. She can be reached through the Illinois

Treasurer’s Office as follows: Illinois State Treasurer Michael W. Frerichs,

James R. Thompson Center – 100 W. Randolph (15-600), Chicago IL 60601,

Downers Grove, IL 60515

T - 630-442-6806

F - 877-840 7826

312-814-2677 (office) 217-836-7238 (cell).

M

M - 224-305-2257

24


GO to SLEEP!

For virtually everyone on the planet, sleeping through

the night is a developmental milestone often reached by a

child’s first birthday. And reaching this milestone is not only

significant in and of itself, but a pre-requisite for many

others. After all, a good night’s sleep (or lack thereof) has

major effect on how a person functions the next day or even

every day. And that goes for everyone, but sleep is even

more important for children or adults who have conditions

such as epilepsy or autism.

common among individuals with autism. That is, until a

couple of years ago. The effects of this were on-again, offagain

for a while, not directly associated with sleep, and not

really alarming, until about a month ago. We started with

one medication, but side effects made us stop. Then the

problems advanced to the point where he had 3 episodes

within a single week where he went 48 hours without sleep.

We saw a doctor who has much experience with medications

and patients with autism, and now have a medication that is

working (hopefully will stay that way).

We’ve personally experienced the fall-out from serious

sleep problems. My now 24-year old son has autism, but

rarely experienced sleep problems that are said to be

That being said, medications are certainly not the only

(or even necessarily the first) resort for sleep difficulties.

25


Another option you may have heard of is weighted blankets. I’m pleased to

introduce Amy Tufano-Moran, the mother of a child with Sensory Processing

Disorder, who made a weighted blanket for her child and turned it into a business

called Caim Comfort Company.

“As Susie stated above, a good night’s sleep is essential to a person’s health and

development. Unfortunately, when a family has a child with special needs, quite

often, everyone is struggling to get the sleep they need. My husband and I are

pretty convinced our daughter rarely slept when she was younger. After she was

born, I was working full time as a teacher. I would try to creep out of the house

early to get work done, so that I could pick her up right away after school. It

didn’t matter how early I got up, as soon as she heard me, she was up too. On

weekends, we’d lay her in between us to try and get her to nap — often times,

my husband or I would get a nap, but our daughter would rarely sleep.

As much as it dismayed me, because my husband and I love our sleep, I figured

this kid just didn’t need that much. Not really a huge problem until she got to

second grade. This is where life unraveled for all of us. Multiple factors led to her

Sensory Processing Disorder becoming a major disruptor in her life. At seven, she

was diagnosed with anxiety, ADHD inattentive, and borderline depression. She

would write on her papers that she hated life and wanted to kill herself.

We did everything we could to help her. Neuro psychologist evaluation,

psychologist, ADHD medications. On a whim, I asked my chiropractor if she

could help. The chiropractor gave us some really interesting suggestions

including using a weighted blanket. I had heard of them but didn’t really know

much. I was immediately put off by the cost and also thought — I need more

help with her during the day, not at night.

But, as parents do, I was willing to try anything to make my daughter feel better.

To get around the cost of the blanket, I thought “I can sew — I’ll just make one

myself”. A side note, this didn’t save me money or frustration. Eventually, I

made the blanket and we tried it.

The next morning, for the first time in my daughter’s life, we had to wake her up!

My husband and I stared at her and each other for a minute. It couldn’t possibly

be that easy … is she dead?! Luckily, she was fine, and the good sleep continued.

We also found that as she got better sleep, she was able to tolerate the rest of her

day better. We have tried a lot of different things to help our daughter, and most

things helped a bit. But the weighted blanket had the most immediate and

significant impact on her ability to tolerate the world around her.

When we saw how much this blanket helped her, and helped me with my own

sleep problems, I started making these blankets for family and friends who also

had sleep challenges. At first, I would be a bit hesitant saying “I hope this helps

you” but the feedback was so overwhelmingly positive that now I can say with

confidence that “I KNOW this will help you”.

For more information about my weighted blankets and the research that supports

their use, please check out my web page www.caimcomfort.com. You can also

visit my Facebook page https://www.facebook.com/amysweightedblankets”

Caim Comfort Company is located in St. Charles IL, a far west suburb of Chicago.

Blankets are handmade by their sewing team. M

26


Of all the milestones a person can achieve in their

life; learning to swim is perhaps one of the most

important, for anyone with or without disabilities;

as a person’s very life may depend on it.

I steadfastly maintain that any one who is conscious

most of the time, can’t breathe water, and doesn’t

have health issues that preclude contact with

swimming pools or other bodies of water, should

attain the milestone of learning how to swim. It is a

well-known fact that people who know how to swim

are less likely to drown. And while I don’t have

general statistics on the subject, I do know that for

anyone who has had a loved one drown, that loss is

100%. And that’s the only statistic that matters.

Personally speaking, I “hooked up” with Fox Valley Special Recreation

Association (FVSRA) for private swim lessons for my son when he was 17

(7 years ago). He was always comfortable around water and participated in

Special Olympics swimming during his high school years. My only regret is

that I did not find FVSRA years earlier.

I am including contact information for FVSRA, as that is a program we

have used personally.

Fox Valley Special Recreation Association (FVSRA), Vaughn Center, 2121

West Indian Trail, Aurora IL 60506 630-907-1114. FVSRA now has online

registration, which for any session typically starts about 1 week before

residents receive FVSRA brochures in the mail. Vaughn Center is one of

the swim lesson locations.

USA Swimming Foundation’s Make a Splash program (www.makeasplash.

org) and Autism Speaks (www.autismspeaks.org) are good sources for

information about swim lesson providers. Both organizations partner with

swim lesson providers to advance the cause of water safety through

swim lessons, particularly for especially vulnerable populations such

as children with autism.

M

27


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Connections child care

Child Care Connections links families to child care

suited to children with challenges.

Child Care Connections also provides informational

articles (referencing North Carolina University

Extension Service) about adapting child care

Features a registry that both parents and providers

can sign-up for when they are looking for, or offering,

care for children with various challenges, such as

developmental disability, autism, hearing impairment,

programs to children with special needs. Once you

sign-up you’ll receive the article Adapting the

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vision impairment, and more!

Check out our website: milestonesmagazine.net

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