Milestones Magazine - Summer 2019

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

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


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eyond disabilities<br />

<strong>Summer</strong> Issue <strong>2019</strong><br />

Articles<br />

Sink or Swim<br />

Run Down of Swim<br />

Lesson Businesses<br />

My First Job<br />

Even with a Disability<br />

Working and Earning<br />

Money is Better<br />

Than Not Working<br />

Just to Collect<br />

Government Benefits<br />

The Family Vacation<br />

Traveling with a<br />

Special Needs Child<br />

Can be Challenging


Inside<br />

Parent of Young Children<br />

<strong>Milestones</strong> and Beyond - page 3<br />

Fly on the Wall Counseling<br />

The Language Barrier - page 5<br />

Guiding a Child Through the Language Barrier<br />

Preschool / School Age<br />

Won’t You Be My Friend? - page 7<br />

Social Skills Classes and Cues<br />

Meltdown in Aisle 5 - page 9<br />

ShopXplore Activity Sets<br />

Please Come to My Party! - page 12<br />

Party Planning Advice<br />

The Family Vacation - page 14<br />

Traveling with a Special Needs Child<br />

Can be Challenging<br />

Teen / Adult<br />

Mom, Can I Use the Car Tonight? - page 17<br />

Marianjoy Driver Rehabilitation Program<br />

My First Job - page 20<br />

Even with a Disability Working and Earning<br />

Money is Better Than Not Working Just to<br />

Collect Government Benefits<br />

It’s My Money! - page 23<br />

The ABLE Act<br />

All Ages<br />

Go to Sleep! - page 25<br />

Everyone Needs a Goodnight’s Sleep<br />

Sink or Swim - page 27<br />

Run Down of Swim Lesson Businesses<br />


<strong>Milestones</strong> and Beyond<br />

Just about all parents have a time or two where they are<br />

concerned whether their child is reaching a developmental<br />

milestone within the normal range. My child is not walking or<br />

talking as early as his cousin; my child is nearly 4 years old and not<br />

even close to being fully toilet trained. Is that normal? Conditions<br />

such as Downs Syndrome or Cerebral Palsy; and the development<br />

delays that result are pretty evident. Other delays are harder to<br />

detect and diagnose; particularly with very young children. Many<br />

doctors recommend a wait and see approach, but this could<br />

delay critical early intervention. So, what’s a parent to do?<br />

<strong>Milestones</strong> <strong>Magazine</strong> has the pleasure of introducing Jillian<br />

Newkirk, of Fly on the Wall Counseling, who has created a free<br />

online developmental assessment for parents. While this tool is<br />

not meant to diagnose conditions such as Autism, Anxiety,<br />

Depression, and Attention Deficit Disorder, it can help parents<br />

decide if something might be off with their child that needs<br />

further attention. So, without further ado, I bring you Jillian.<br />

“My name is Jillian Newkirk, I am a Licensed Clinical Professional<br />

with a passion to provide convenient, quality online counseling<br />

and coaching services to busy parents and children. I founded<br />

Fly on the Wall Counseling to equip parents to confidently<br />

manage their children’s challenging behaviors and emotions.<br />

My clinical experience has led me to be an expert in working<br />

with children with behavior and mood disorders and their<br />

families. I also work with parents whose children have not<br />

received any diagnosis, but need additional support and want<br />

to feel confident in their parenting. My sessions are conducted<br />

via HIPAA compliant video conferencing, so that, I am able to<br />

provide a convenient service to busy parents, easily and<br />

provide less intimidating services to children who struggle<br />

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

significant changes and growth in my clients by implementing<br />

customized therapeutic and psychoeducational strategies and<br />

interventions that uniquely fit their family’s presenting concerns,<br />

needs, values, and goals.<br />


Googling for help is simply not enough, and<br />

traditional mental healthcare services often<br />

have too many barriers to make continuous<br />

services accessible. Beyond that, it can take years<br />

to see progress in child therapy. I have found that<br />

working with the parents leads to more effective<br />

and efficient, lasting change that parents desire.<br />

There is a large gap between Google and<br />

traditional mental health, and I am looking to<br />

bridge that gap to provide the support and care<br />

parents deserve and desire. That is one reason<br />

why I created my free assessment tool: Red Flag<br />

Behavior Assessment Tool (Click to access now!).<br />

I know that many parents are wondering if their<br />

child’s behavior is normal or something that<br />

needs to be addressed. Many are wondering if<br />

their child has a mental/behavioral/emotion<br />

“My clinical experience<br />

has led me to be an expert<br />

health disorder, but don’t want to spend 100s or<br />

1000s of dollars to find out… especially if their<br />

child does not meet criteria for a diagnosis!<br />

Google searches make you think your child has<br />

in working with children<br />

with behavior and<br />

mood disorders and<br />

every diagnosis under the sun and only leaves<br />

you with more questions and concerns. This free<br />

assessment tool fills in the gap. Hundreds families<br />

have already benefited from this tool, receiving<br />

individualized results. No two children are alike, so<br />

their families.”<br />

I make sure to personally analyze each assessment<br />

and provide uniquely tailored responses to every<br />

person that fills one out. You deserve clarity! Also<br />

feel free to visit my website to learn more about<br />

what I do, my clients’ successes, and my heart!”<br />

www.FlyOnTheWallCounseling.com<br />

M<br />




For the<br />


in the FIRST YEARS of their CHILDREN’s lives<br />

are talking, walking, and toileting independently.<br />

Parents often worry whether their child is “late” developmentally<br />

and may compare their child to a relative’s or friend’s child who seemed<br />

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

Although much of this concern may turn out to be unfounded for individual children;<br />

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

isn’t always good enough either. Parents usually have a good sense of when<br />

there could be a real problem.<br />

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

He made his frustration with his communication difficulties known by shrieking;<br />

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

Book we had just bought “My First Book of Animal Sounds”.<br />


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

connection between the words and the animal sounds; and the language<br />

barrier was broken! Soon to follow were requests for pizza and other foods,<br />

various toys, and so on.<br />

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

professionals are sometimes needed to lend a hand in the process. There are<br />

a variety of therapies and techniques available, according to the reason(s)<br />

for the developmental lag. One type of therapy, called ABA (Applied<br />

Behavioral Analysis) can be used with children with sensory or cognitive<br />

challenges such as Autism. I am pleased to introduce my friend Stacie Green,<br />

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

towards and through the language barrier. So, without further ado (please<br />

forgive the cliché) I introduce Stacie, who will write about her experiences<br />

with her young client.<br />

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

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

We were at the very beginning stages of using PECS (picture exchange<br />

communication system) to help him communicate his wants and his needs<br />

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

problem behaviors to try and get his point across to us.<br />

After we introduced PECS to him, and were consistently using this<br />

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

needed. Soon after PECS was introduced to him however, he started to say<br />

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

words, as well as other words and everyone else did as well to assist in<br />

expanding his vocabulary. I used every opportunity I could to teach him<br />

words for certain things. Especially the ones in his environment, and the<br />

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

the most important for us to work on with him.<br />

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

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

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

very rewarding experience/job as well.”<br />

Contributor Stacie Green can be reached at Positive Behavioral Connections,<br />

630-842-5689. She is an ABA Therapist, RBT-18-48188 M<br />


Won’t<br />

you<br />

be my<br />

Friend?<br />

The title of this article paraphrases<br />

Fred Roger’s tag line (his ended<br />

with neighbor), which I think is<br />

appropriate in regard to a man<br />

who understood every child has<br />

worth, wants to belong, and wants<br />

friends. A child’s making their first<br />

true friend is (or can be) one of the<br />

milestones in that child’s life.<br />

Making and keeping friends is<br />

challenging, and children who<br />

have difficulty with social skills<br />

(whether or not they have an<br />

identified disability) have an<br />

especially hard time with this.<br />


There are a variety of things that<br />

public and private schools do to<br />

help students and parents meet<br />

this challenge. Social stories and<br />

social skills classes are common<br />

methods used with children<br />

and families.<br />

Little Friends offers 6-week<br />

sessions, with each session<br />

lasting 45-60 minutes, for different<br />

age group including preschool,<br />

elementary school, middle school,<br />

and teen/young adult. Activities<br />

and techniques are age<br />

appropriate, focusing on social<br />

Social skills classes/programs<br />

are typically offered in public<br />

schools to special education<br />

behavior, taking turns, and (with<br />

teens/young adults), interacting in<br />

community settings.<br />

students as part of their<br />

Individualized Education Program<br />

Little Friends is located at<br />

(IEP). Private and/or non-profit<br />

140 N. Wright St in Naperville IL<br />

organizations offer classes as well.<br />

60540, 630-305-4196. They<br />

One such organization, located in<br />

can be visited online at<br />

the Chicago area, is Little Friends<br />

www.littlefriendsinc.org and<br />

Center for Autism.<br />

emailed at info@lilfriends.com. M<br />



INAisle5<br />

While it’s unlikely that a “Meltdown in Aisle 5”<br />

announcement has ever actually been made on a grocery<br />

store’s loudspeaker, it very likely has occurred (maybe not in<br />

this particular aisle, but somewhere in the store) for families<br />

with young children, particularly those who have sensory<br />

issues. Just being able to get through an errand to the grocery<br />

store without incident is a milestone for many families who<br />

have children with challenges.<br />

To address this, I am pleased to introduce Tarryl Zdansky,<br />

a mother of two special needs young adults, who found out,<br />

during her experience working in retail settings, that many<br />

people (not just “special needs”) had less than optimal<br />

shopping experiences. She set out to do something about it,<br />

taking her ShopXplore idea to her manager in the hopes of<br />

offering shopping lists to the customers. The manager agreed<br />

that the shopping lists would be beneficial to the customers<br />

for educational purposes as well as for sensory issues.<br />


Some of the comments received were from people asking for schedules<br />

for other activities and others wanted their schedule made before<br />

entering the store. That is when Tarryl’s Teaching Tools began. Tarryl<br />

wanted to make a bag that would keep task cards organized in one place<br />

and personalize the bag handles with a name. With the ShopXplore<br />

Activity Sets designed by her business Tarryl’s Teaching Tools, Tarryl<br />

offers personalized schedules and convenient bag with colorful photo/<br />

word cards to help children and adults focus on their community, home,<br />

and school activities.<br />

I now turn this article over to Tarryl to further describe the ShopXplore<br />

Activity sets and tell you how they help children and adults get through<br />

a shopping trip with purpose, focus, and most importantly, a sense<br />

of calm.<br />

“Have you ever walked into a<br />

grocery store and the noise was<br />

just so loud that you feel as<br />

though you cannot think or that<br />

the lights are so bright that you<br />

felt like you need sunglasses? All<br />

of the overwhelming amounts of<br />

product can be mind boggling,<br />

needless to say, to anyone and if the store is crowded, well you just want<br />

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

vision and smell can get overstimulated by all of the colors clustered<br />

together in a store as well as the many odors of produce, meats, seafood,<br />

and bakery, and prepared foods. Making your way through the store<br />

may be effortless for some, but for others the task can be a daunting one.<br />

A shopping list consisting of each item you will need to shop for<br />

is an ideal method to keep your focus targeted on finding those<br />

particular items in the store. If the focus is on each particular step of<br />

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

get through the store in a timely manner while also preventing an<br />

outburst. Each person is unique in their own way and we wanted to help<br />

a variety of abilities within all ages. Using a combination of colorful<br />

photos and words, the ShopXplore Activity Sets make up a three-tier<br />

system to help a wide range of learners. The ShopXplore Activity sets<br />

were designed by Tarryl’s Teaching Tools to help individuals achieve<br />


their goals within the community, home, and school by listing each task<br />

within an activity. We like to refer to them as schedules for your life.<br />

ShopXplore Activity Sets consist of a bag with loop fastener tape on<br />

both sides of the bag for easy access and a center pocket. The bag<br />

handle has hook and loop fastener tape so that the bag can connect to a<br />

grocery cart or any convenient location. Laminated task cards with hook<br />

fastener tape are able to connect to the front and back of the bag. Each<br />

activity category will have photos only (for the beginning stages of<br />

getting familiar with the item), photos with words (for those ready to<br />

match the word with the item), and word only (for those learning to<br />

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

the laminated card into the center pocket, then move on to the next item<br />

until all are completed. You did it!!!”<br />

Tarryl Zdansky is a Mom with 2 special needs children creating<br />

vocational experiences for individuals with special needs. Her business<br />

can be found online at https://tarrylsteachingtools.com<br />

and she can be messaged through the website. M<br />


Please<br />

COME<br />

to my<br />

PARTY!<br />

For many people, particularly children, birthdays represent an important<br />

milestone that comes around every year, rain or shine. Parents and<br />

children often celebrate that annual milestone with a party, whether<br />

at home or at a public setting of some kind.<br />

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

a disappointment when:<br />

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

2. Few, if any, families respond positively to the invitation.<br />

3. Few, if any, of families who did say yes actually show up.<br />

For children with sensory, physical, cognitive, or other challenges, birthday<br />

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

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

parents overcome this challenge, I am pleased to introduce Susan Noble,<br />

operator of Blessed Events-The Gift of Giving; to provide some practical<br />

advice and assistance in party planning for children with challenges.<br />

“When doing my research on planning birthday parties for children with<br />

special needs I found these tips to be the most successful. All children<br />

want to be included and should be and that is no exception for children<br />

with special needs.<br />

When planning a birthday party for a child with special needs always<br />

discuss with the parents what the child may require, what their do’s<br />

and don’ts are.<br />

Is the home or place of venue accessible for a special-needs child?<br />


Is it wheelchair accessible?<br />

What will your activities consist of? Will they fit the needs of all your guests?<br />

Make sure you explain to the children what is going to happen so that they<br />

are not caught by surprise.<br />

Children with or without special needs can sometimes be overwhelmed<br />

when everyone sings Happy Birthday by having an activity in another part<br />

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

Sensory activities are a must for special needs children and you will find<br />

even those children without special needs will enjoy them and want to join<br />

in on all the fun.<br />

Most important is knowing the dietary needs of each child attending. I<br />

always ask the parents: are there any allergies, are there any children who<br />

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

know what they can and cannot have.<br />

I can be reached at contact4info@blessedeventsparties.com. We service<br />

the Chicagoland area and also provides DIY Birthday Blessings in a box for<br />

those out of area. 50% of our party proceeds goes to benefit the Epilepsy<br />

Warriors Foundation. www.epilepsywarriors.org Blessed Events-The Gift of<br />

Giving was started as a way to help raise funding for the foundation for our<br />

Warrior Ambassador families but also to help with foundation expenses.<br />

Everyday is a reason to celebrate.” M<br />


the Family Vacation<br />

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

be stressful at times in the best of circumstances. And when you add in the<br />

sensory or physical challenges or behaviors of a child with disabilities, it can<br />

be downright daunting. Fortunately, there is help from travel specialists who<br />

understand the challenges you’re facing because they face them as well.<br />

One of these travel specialists is Sarah Marshall of TravelAble, LLC, who will<br />

introduce herself and give a couple of practical tips that will help keep your<br />

travel plans from being nothing more than a fantasy! Welcome, Sarah!<br />

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

special needs. My goal is to empower every family to live adventurously. And<br />

what does that mean? Temple Grandin once said that “the mos important<br />

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

when we push our children out of their comfort zones and cultivate a sense<br />

of exploration and adventure, great things can happen. My expertise comes<br />

from the fact that my beautiful son, Aidan, has had a long journey and that<br />

journey has taken place all over the world. We’ve found the more we<br />

challenge him to live outside our self-imposed routine, the less severe<br />

his behaviors are.<br />

However, our living adventurously hasn’t always been sunshine and roses.<br />

There have been meltdowns in museums; getting sick all over 5-star<br />

restaurants; days spent in the hotel when I wanted to be outside. But<br />

none of these memories have kept me from trying again. They have never<br />

stopped me from continuing to book that trip. Mostly because while these<br />

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

make me forget the smile on his face when he saw something awesome,<br />

or when he made it to the top of the mountain.<br />

There are 3 tips I always give those anxious about traveling with special<br />

needs children that have helped our family to travel successfully.<br />


1. Manage Your Expectations: When we first book that adventure, we are often<br />

swayed by the images we see in the brochure – glossy, sunshine-filled, where<br />

the family lays on the beach on matching towels, the parents drinking slushy<br />

wine drinks out of coconuts. But our reality is very different. If we set our<br />

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

get disappointed, angry, and resentful, and often we claim the vacation was<br />

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

expect things will happen, we can plan for the eventuality and save ourselves<br />

the disappointment.<br />

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

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

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

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

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

multiple fine art museums! Rather than assuming we could just walk into the<br />

museums and he would be magically transformed into a child that loved fine art<br />

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

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

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

public parks. We would go to the park and one of the adults would stay behind<br />

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

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

and would remain content. All of our goals were met.<br />

In Rome, we passed the time before our museum tickets by riding family tandem<br />

bikes around Villa Borghese. When it came time for our museum entrance, Aidan<br />

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

And he walked around the art pleasantly and without fuss. This exceeded our<br />

expectations and made for a nice family outing. But by managing our expectations,<br />

we had the ability to be prepared for any eventuality.<br />

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

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

airport, utilize TSA Cares to help get your family through security. TSA Cares is<br />

a helpline that provides travelers with disabilities, medical conditions and other<br />

special circumstances additional assistance during the security screening<br />

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

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


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

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

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

you don’t ask, you’ll never know!<br />

The most important thing when asking is to be polite and grateful. When Aidan and<br />

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

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

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

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

have gotten the same result. It doesn’t hurt to be nice!<br />

3. Prepare, Prepare, Prepare: The last tip I always give is to prepare and prepare<br />

and prepare again. With Aidan, we traveled with a Nutribullet blender in our<br />

suitcase to be able to prepare pureed foods he would eat wherever we went.<br />

We carried plastic bowls and Gerber spoons to ensure his food was served<br />

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

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

Planes now allow tablets to be on during taxi and takeoff, meaning your child<br />

can have a tablet from the moment they get on the plane until they get off. If<br />

they are calmed by tablets, pre-load movies, shows, or games they can play<br />

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

is not then!!<br />

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

needs families. I contact hotels to make arrangements, I find restaurants that can<br />

accommodate dietary restrictions, I create itineraries that build in down time just<br />

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

prepare and prepare again, you are ready for anything that could happen and if<br />

something happens that you haven’t prepared for, it doesn’t seem that bad<br />

because you’ve prepared for everything else.<br />

Having an adventurous spirit is something that defines special needs parents.<br />

We are committed to helping our children succeed, thinking outside the box, and<br />

fighting hard for what we need. When you actually live adventurously, and step<br />

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

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

Sarah Marshall lives in the Naperville IL area. She can be contacted by<br />

email: info@travelablevacations.com. M<br />


Mom, Can I Use the Car Tonight?<br />

One of the milestones for most teens is getting their driver’s license.<br />

This rite of passage, while an unrealistic goal at best for some individuals<br />

with special needs, is a possibility, even a likelihood, for others; with<br />

the right help to compensate for their physical, cognitive, or fine motor<br />

skill deficits.<br />

For many of us, driving is a symbol of independence. That skill can lead<br />

to education and employment opportunities, more easily get to medical<br />

appointments, and connect with family and friends. Being an independent<br />

driver is something that nearly everyone desires. As parents, we want our<br />

children to be as independent as possible. Being an independent driver<br />

is also a huge responsibility. When we enter the roadway, we have a<br />

responsibility for both the safety of ourselves and other roadway users.<br />

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

When there is uncertainty, consulting your child’s care team as well as<br />

the experts at the Marianjoy Driver Rehabilitation program is key.<br />

The Marianjoy Driver Rehabilitation program starts with an evaluation.<br />

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

skill components of the driving task) and behind the wheel evaluation<br />

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


the evaluation is typically 2 ½ hours. During the clinical<br />

evaluation, we use evidence-based assessments to<br />

the teaching of Driver’s Education. Outlined below<br />

are only some examples.<br />

look at vision, visual perception, cognition, and<br />

motor skills. We also have a discussion with the new<br />

driver and the parent about the new driver’s functional<br />

skills. How much help does she need getting ready for<br />

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

several hours? Any safety concerns? Any prior<br />

experience driving a car? Riding a bike?<br />

There is a wide range of adaptive equipment available<br />

for drivers with physical disabilities. We may be<br />

introducing adaptive equipment to compensate for<br />

decreased strength or range of motion. For example,<br />

a person with left sided weakness may have difficulty<br />

using her left hand to steer or reach the turn signal<br />

lever. This person may benefit from a right sided<br />

Then, we assess that student’s abilities behind the<br />

wheel (BTW). Most of our students do not have any<br />

prior experience driving a car. We understand that!<br />

We take them driving on the Marianjoy campus, 60+<br />

acres of private property with limited traffic. We are<br />

assessing if there is improvement over time with<br />

instruction. We are looking for potential.<br />

spinner knob and a turn signal crossover, so she can<br />

use her right hand for these actions. Adaptive driving<br />

equipment can range from simple or “low tech” options<br />

as above to very complex or “high tech” (electronic<br />

systems, driving with joysticks). The driver rehab<br />

specialists would guide the student and family through<br />

the entire process of becoming licensed with adaptive<br />

equipment (including modification of a personal<br />

Based on the performance on the clinical and BTW<br />

evaluations, the therapist will make recommendations.<br />

Examples of recommendations may be: pursue driving<br />

through a “typical” driving school, return for training<br />

at a driver rehabilitation program such as Marianjoy’s,<br />

or do not pursue driving right now. If the recommendation<br />

is that the student does not pursue driving, the<br />

vehicle that meets industry standards). Information on<br />

this process can also be found at www.aded.net and<br />

www.nmeda.org. Many newer vehicles are equipped<br />

with additional technology to help drivers, such as<br />

backup cameras and blind spot detection systems.<br />

Drivers with and without physical disabilities may<br />

benefit from such features.<br />

therapist will work with the student and parent to<br />

construct a home program. In other words, here are<br />

activities that will help prepare the student to<br />

potentially be a driver one day.<br />

For drivers with intellectual disabilities or cognitive<br />

involvement, it is important to adapt how driving is<br />

instructed. During the evaluation, the driver rehab<br />

specialist will inquire about and identify how the<br />

At Marianjoy, all the staff are occupational therapists<br />

(OTs), who have additional extensive training regarding<br />

driving (all are Certified Driving Instructors and 4/6<br />

are Certified Driver Rehabilitation Specialists). OTs are<br />

skilled in task analysis. In other words, breaking down<br />

the task into various skill components. This allows OTs<br />

to better adapt the driving task for people with various<br />

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

There are many ways to adapt both the vehicle and<br />

student learns best. For example, students on the<br />

Autism Spectrum may benefit more from instruction<br />

with visual materials as compared to only using verbal<br />

directions. Some students will have difficulty managing<br />

multiple processes at the same time and benefit from<br />

isolating one skill at a time. For example, starting out<br />

with the student only being responsible for steering<br />

and lane positioning. Some students with processing<br />

differences also benefit from commentary driving.<br />


determination to become a driver must come from<br />

the student—not just the parent. The process of<br />

working towards the student’s driving goal can be a<br />

significant undertaking and relies on the collaboration<br />

of the student, parent, and therapist. Here are some<br />

questions to ask yourself when considering if<br />

your child is ready.<br />

1. Does he want to become a driver?<br />

2. Can he verbalize a few realistic driving goals?<br />

With this activity, the student is encouraged to speak<br />

aloud what he is seeing (pertinent signs, potential<br />

hazards) and verbalize what he plans to do. “I see the<br />

pedestrian crossing sign ahead. I am going to slow<br />

down. I’m looking. There are no pedestrians so I am<br />

going to keep driving.” The driver rehab specialist<br />

works with the driver to maximize his potential.<br />

Some drivers have visual disabilities. If the driver meets<br />

the state vision requirements for driving, she may be<br />

a candidate to be a driver. The driver rehab specialist<br />

works with the driver to teach compensatory strategies<br />

and use of visual aids. Visual aids may include devices<br />

such as additional mirrors, different tints, special visors,<br />

etc. Some people are candidates to use Bioptic<br />

telescope lenses. The person’s vision specialist can<br />

determine if she is a candidate for such specialized<br />

lenses. These lenses are like small magnifiers which<br />

sit on top of the person’s normal glasses. They allow<br />

3. Can he cross a busy street safely and independently?<br />

4. Is he allowed to be home alone for a few hours?<br />

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

to commit to practicing regularly?<br />

Here at the Marianjoy Driver Rehabilitation Program,<br />

we are passionate about supporting people with<br />

disabilities in meeting their driving goals. Please<br />

contact us if you have any questions regarding the<br />

program or if your child is ready to pursue driving.<br />

Nicole Thonn, an Occupational Therapist and Certified<br />

Driver Rehab Specialist at Marianjoy Rehabilitation<br />

Hospital, works to help individuals with special needs<br />

move towards this major step towards independence.<br />

She sees people who have various physical, cognitive,<br />

and visual disabilities, evaluates their driving potential;<br />

and for individuals she believes can become safe<br />

drivers, she will develop a plan that should lead to<br />

that person attaining a driver’s license.<br />

the person to identify potential hazards sooner,<br />

read roadway signs, or even identify the color of<br />

the traffic light sooner. The driver rehab specialist<br />

works with the person with visual disabilities to<br />

introduce adaptive equipment and teach<br />

compensatory strategies.<br />

Nicole Thonn, Occupational Therapist,<br />

Certified Driver Rehab Specialist<br />

Driver Rehabilitation, Marianjoy Rehabilitation Hospital<br />

26W171 Roosevelt Road<br />

Wheaton, Illinois 60187<br />

630.909.6084 office<br />

Additionally, here are further points to consider.<br />

Setting realistic goals is vital for the success of the<br />

630.909.6081 fax<br />

nicole.thonn@nm.org<br />

driver. For some drivers, the goal may be to drive to a<br />

few familiar places. Being able to drive independently<br />

Special note: This article is intended for informational<br />

to even a few places can change someone’s life.<br />

Motivation is also necessary for success. The<br />

purposes only.<br />

M<br />



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

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

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

summer position as help desk at a computer lab at a local college.<br />

His next gigs were at fast food joints. He eventually ended up going<br />

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

National Security Agency (NSA) in the Baltimore /<br />

Washington D.C. area.<br />

My younger son’s trajectory was quite different. He has autism and<br />

some cognitive impairment. While in school, he had a handful of<br />

training opportunities, mostly involving recycling at his school and<br />

other district schools to which he was transported. The vocational<br />

coordinator’s assessment of his abilities was that he can succeed at a<br />

volunteer job with maximum support. His only real work experience is<br />

as “team member” at a greenhouse whose mission is to provide job<br />

training for people with disabilities. He has a weekly shift there and I am<br />

his volunteer job coach. Each family pays a monthly fee, of which roughly<br />

half comes back to the worker as minimum wage for about 10 hours of work<br />

per month.<br />

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

them an income, independence, and a starting taste of adult life. For many<br />

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

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

challenges, those difficulties are often compounded, resulting in an<br />

unemployment rate that can approach 80% (or higher).<br />

In addition, even when a suitable job is available, there are often reservations<br />

about taking it due to the effects, real or perceived, that the income can<br />

have on government benefit programs for which the individual qualifies;<br />

specifically: Medicaid and/or the Social Security program Supplemental<br />

Security Income (SSI).<br />

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

a financial planner who specializes in working with families and individuals<br />

with disabilities. Here is a recent blog post of hers on the subject.<br />

“In the novel “The Adventures of Tom Sawyer,” the protagonist tricks his<br />

friends into doing a large chore for him for free. The story does not recount<br />

whether the boys who did the work remained his friend when they<br />


ealized they had been duped. I’m thinking they<br />

must have been at least a little peeved.<br />

Who wants to work for free?<br />

I was at a transition planning committee meeting<br />

the other day. One of the presenters who works<br />

for Gigi’s Playhouse (check it out at<br />

https://gigisplayhouse.org) mentioned in<br />

passing that some people who attend Gigi’s<br />

employment readiness programs don’t want paid<br />

work for fear that it will disrupt their benefits. I<br />

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

who is not independently wealth would settle for primary employment that does not<br />

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

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

almost always better off working and earning money than not. Here’s an<br />

example using Supplemental Security Income (SSI), which is the first benefit for<br />

which a person with a disability usually qualifies. SSI is means-tested, which is a<br />

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

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

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

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

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

still has more money. Let’s do the numbers.<br />

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

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

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

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

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

Of the remaining $515, half or $257.5 does not count. The remaining $257.5 —<br />

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

Before: Total income = SSI = $750/month<br />

After:<br />

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

In addition to having over $300 of additional disposable income, Clara also has<br />

new experiences, a chance to learn new skills, co-workers and a way to use her<br />

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

way to earn Social Security credits towards retirement benefits and, in the kind of<br />

circular logic you might expect from a government program that evolved through<br />

over time through many different administrations, credits towards disability<br />

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

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

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


maximum of 4 credits/year. How many credits<br />

you need to get SSDI depends on your age. You<br />

can find a more detailed discussion here:<br />

https://www.ssa.gov/planners/credits.html.<br />

Let’s say that Clara, who is 21, goes on to earn 6<br />

credits by the time she is 24. She now qualifies<br />

for SSDI on her own work record. SSDI is based<br />

on her work history, which is short, so she only<br />

qualifies for $200/month to start with. Because<br />

her SSDI benefit is lower than her SSI benefit,<br />

she continues to get the SSI, although it is<br />

reduced dollar for dollar for the amount of SSDI<br />

after $20. Her work income continues to reduce<br />

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

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

income looks like this:<br />

Before: Total income = SSI = $750/month<br />

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

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

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

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

she gets to keep $20. The remaining $280 reduces her SSI benefit to $470.<br />

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

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

picture looks like this.<br />

Before: Total income = SSI = $750/month<br />

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

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

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

below that threshold (which is indexed almost yearly), she can continue to<br />

receive her full SSDI benefit and keep all of her work earnings. If she<br />

believes she has the capacity to earn more than that on an ongoing basis, she<br />

may want to risk crossing the line and going off benefit, knowing that she<br />

can go back on is, due to her disability, she finds herself unable to sustain<br />

earning at that level. That, however, is a discussion for another day. Beyond<br />

a doubt though, it is better to work for pay than not.”<br />

Contributor Alexandra Conroy Baig, MBA, CFP® can be reached by phone<br />

at 773-297-1556 and email at alexandra@companionsonyourjourney.com.<br />

She maintains a website, www.companionsonyourjourney.com, providing<br />

Special Needs Expertise for families and professionals. M<br />


IT’S MY MONEY!<br />

“earning<br />

one’s own<br />

INCOME<br />

is the<br />

basis for<br />


independence<br />

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

is the basis of financial independence. That independence comes with<br />

decision making, like figuring out how to spend, save, and invest. People<br />

on benefits for disabilities have long been effectively denied the self-direction<br />

and advocacy most people attain. But times they are a changing (finally)<br />

with recent Congressional passage, of the A Better Life Experience or<br />

ABLE act of 2014. ABLE allows people with disabilities and their families<br />

to maintain a tax-free account offering self-directed checking and<br />

longer-term investment options.<br />

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

the pleasure of speaking with financial planner Nancy Roach-Wilder to gain<br />

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

”<br />

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

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

supplemental needs without the expense of a separate Special Needs Trust.<br />

ABLE accounts harbor assets from the second day they are opened, as<br />

opposed to the look back provisions of other types of trusts. The allowed<br />

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

continue to qualify for SSI and Medicaid benefits. The ABLE account can<br />

prevent unexpected incomes, like unplanned inheritances or legal<br />

settlements, within limits, from interrupting eligibility for SSI and Medicaid.<br />

The ABLE account has tax preferred features, when the money is spent<br />

for qualified expenses relating to the person’s disability.<br />

Allowed expenses broadly include education, housing, transportation,<br />

employment training and support, assistive technology, personal support<br />

services, health, prevention & wellness, financial management and<br />

administrative services, legal fees, funeral and burial expenses and basic<br />

living expenses.<br />


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

number. The account has a fixed option (checking account) and investment<br />

options (similar to 529 accounts). Each provider state selects professional<br />

money management for their plan.<br />

On the cautionary side, ABLE is not a complete panacea. Each family<br />

presents a different set of needs and circumstances. There are limitations<br />

in some situations. Those with sizeable legal settlements, for example,<br />

intended for life-long care of a profoundly disabled person might be better<br />

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

to grow over $100,000 can result in taxation, and can count against<br />

government asset limits. Meaning, Medicaid can put a hold on benefits<br />

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

government lien, at the death of the beneficiary, to the extent of government<br />

benefits received. So, one might consider the spending needs of the<br />

participant before depositing large sums to the account.<br />

Another significant caveat is that the initial owner and beneficiary must be<br />

an adult, who was diagnosed disabled before their 26th birthday.<br />

So, if you are considering an ABLE account, go to your states website and<br />

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

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

have put the Medicaid payback on hold. For links to state programs and<br />

detailed information, visit website www.ablenrc.org.<br />

Thanks again to Nancy Roach-Wilder, CFP® and CHSNC for her overview<br />

of the ABLE account. In her own words:<br />

Ms. Roach-Wilder has over 30 years of experience as a financial advisor.<br />

As a Certified Financial Planner CFP® and a Chartered Special Needs<br />

Consultant (ChSNC) through the American College of Financial Planning<br />

she offers public education and family guidance on issues that are<br />

important to you. While being a special needs parent helps her identify<br />

with client needs, the additional training she has taken sets her apart, when<br />

it comes to implementation of strategies with the potential to enhance your<br />

stability and harmony at home.<br />

Nancy Roach-Wilder<br />

CFP®, ChSNC<br />

Certified Financial Planner<br />

Note: Nancy Roach offers financial planning and investment advisory services<br />

through Pruco Securities, LLC (Pruco), doing business as Prudential Financial<br />

Planning Services (PFPS), pursuant to separate client agreement. Offering<br />

insurance and securities products and services as a registered representative<br />

of Pruco, and an agent of issuing insurance companies. 1-800-201-6690.<br />

Prudential Advisors<br />

Chartered Special<br />

Needs Consultant<br />

1901 Butterfield Road<br />

Suite 250<br />

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

is the director of IL ABLE. She can be reached through the Illinois<br />

Treasurer’s Office as follows: Illinois State Treasurer Michael W. Frerichs,<br />

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

Downers Grove, IL 60515<br />

T - 630-442-6806<br />

F - 877-840 7826<br />

312-814-2677 (office) 217-836-7238 (cell).<br />

M<br />

M - 224-305-2257<br />


GO to SLEEP!<br />

For virtually everyone on the planet, sleeping through<br />

the night is a developmental milestone often reached by a<br />

child’s first birthday. And reaching this milestone is not only<br />

significant in and of itself, but a pre-requisite for many<br />

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

major effect on how a person functions the next day or even<br />

every day. And that goes for everyone, but sleep is even<br />

more important for children or adults who have conditions<br />

such as epilepsy or autism.<br />

common among individuals with autism. That is, until a<br />

couple of years ago. The effects of this were on-again, offagain<br />

for a while, not directly associated with sleep, and not<br />

really alarming, until about a month ago. We started with<br />

one medication, but side effects made us stop. Then the<br />

problems advanced to the point where he had 3 episodes<br />

within a single week where he went 48 hours without sleep.<br />

We saw a doctor who has much experience with medications<br />

and patients with autism, and now have a medication that is<br />

working (hopefully will stay that way).<br />

We’ve personally experienced the fall-out from serious<br />

sleep problems. My now 24-year old son has autism, but<br />

rarely experienced sleep problems that are said to be<br />

That being said, medications are certainly not the only<br />

(or even necessarily the first) resort for sleep difficulties.<br />


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

introduce Amy Tufano-Moran, the mother of a child with Sensory Processing<br />

Disorder, who made a weighted blanket for her child and turned it into a business<br />

called Caim Comfort Company.<br />

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

development. Unfortunately, when a family has a child with special needs, quite<br />

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

pretty convinced our daughter rarely slept when she was younger. After she was<br />

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

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

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

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

my husband or I would get a nap, but our daughter would rarely sleep.<br />

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

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

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

Sensory Processing Disorder becoming a major disruptor in her life. At seven, she<br />

was diagnosed with anxiety, ADHD inattentive, and borderline depression. She<br />

would write on her papers that she hated life and wanted to kill herself.<br />

We did everything we could to help her. Neuro psychologist evaluation,<br />

psychologist, ADHD medications. On a whim, I asked my chiropractor if she<br />

could help. The chiropractor gave us some really interesting suggestions<br />

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

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

help with her during the day, not at night.<br />

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

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

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

made the blanket and we tried it.<br />

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

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

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

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

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

things helped a bit. But the weighted blanket had the most immediate and<br />

significant impact on her ability to tolerate the world around her.<br />

When we saw how much this blanket helped her, and helped me with my own<br />

sleep problems, I started making these blankets for family and friends who also<br />

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

you” but the feedback was so overwhelmingly positive that now I can say with<br />

confidence that “I KNOW this will help you”.<br />

For more information about my weighted blankets and the research that supports<br />

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

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

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

Blankets are handmade by their sewing team. M<br />


Of all the milestones a person can achieve in their<br />

life; learning to swim is perhaps one of the most<br />

important, for anyone with or without disabilities;<br />

as a person’s very life may depend on it.<br />

I steadfastly maintain that any one who is conscious<br />

most of the time, can’t breathe water, and doesn’t<br />

have health issues that preclude contact with<br />

swimming pools or other bodies of water, should<br />

attain the milestone of learning how to swim. It is a<br />

well-known fact that people who know how to swim<br />

are less likely to drown. And while I don’t have<br />

general statistics on the subject, I do know that for<br />

anyone who has had a loved one drown, that loss is<br />

100%. And that’s the only statistic that matters.<br />

Personally speaking, I “hooked up” with Fox Valley Special Recreation<br />

Association (FVSRA) for private swim lessons for my son when he was 17<br />

(7 years ago). He was always comfortable around water and participated in<br />

Special Olympics swimming during his high school years. My only regret is<br />

that I did not find FVSRA years earlier.<br />

I am including contact information for FVSRA, as that is a program we<br />

have used personally.<br />

Fox Valley Special Recreation Association (FVSRA), Vaughn Center, 2121<br />

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

registration, which for any session typically starts about 1 week before<br />

residents receive FVSRA brochures in the mail. Vaughn Center is one of<br />

the swim lesson locations.<br />

USA Swimming Foundation’s Make a Splash program (www.makeasplash.<br />

org) and Autism Speaks (www.autismspeaks.org) are good sources for<br />

information about swim lesson providers. Both organizations partner with<br />

swim lesson providers to advance the cause of water safety through<br />

swim lessons, particularly for especially vulnerable populations such<br />

as children with autism.<br />

M<br />


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10% Off Weighted Blanket<br />

Like more information?<br />

Call or email Beth Hart: 815-474-9308<br />

sewingfromthehart@gmail.com<br />

Every Day is a Reason to Celebrate!<br />

10% Off a Children’s Birthday Party<br />

for 6 by Blessed Events<br />

Email for Details<br />

contact4info@blessedeventsparties.com<br />

*Invoiced through PayPal<br />


Connections child care<br />

Child Care Connections links families to child care<br />

suited to children with challenges.<br />

Child Care Connections also provides informational<br />

articles (referencing North Carolina University<br />

Extension Service) about adapting child care<br />

Features a registry that both parents and providers<br />

can sign-up for when they are looking for, or offering,<br />

care for children with various challenges, such as<br />

developmental disability, autism, hearing impairment,<br />

programs to children with special needs. Once you<br />

sign-up you’ll receive the article Adapting the<br />

Child Care Environment for Children with<br />

Special Needs.<br />

vision impairment, and more!<br />

Check out our website: milestonesmagazine.net

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