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
10
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
Child Care Environment for Children with
Special Needs.
vision impairment, and more!
Check out our website: milestonesmagazine.net
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