Winter 2020

eyond disabilities
Winter Issue 2020
Hop to It!
Play for All
School @ Home
It’s My Business
M

contents
03 Hop to It!
07 School @ Home
08 I.E.P. & Section 504
Accommodations - two sides of
the same coin?
09 What’s for Breakfast Lunch
& Dinner?
11 Play for All
13 National Handwriting Day
15 It’s My Business
18 Right at Home
winter
2020
Publisher
Susie Redfern, is the parent of a special
needs child who recently “aged out”
of the public-school system.
She developed Milestones Magazine
to help individuals with disabilities
and their families achieve and celebrate
events and milestones in their lives.
info@milestonesmagazine.com
1
MilestonesMagazine.net

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1
Nancy Roach-Wilder, CFP ® , ChSNC
Financial Planner, Prudential Advisors
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hop to it!

A number of businesses have been created by parents of children with
challenges. Often, they are started to meet their own child’s needs, then
expanded to help families with similar issues. One such new business is
Hop Along Yogi. I am honored to introduce its founder, Laura, the parent
of a child with a hearing impairment, to tell her story.
“On September 18, 2018, we welcomed our second baby girl, “Ellie” into
the world. From day one, we were smitten. She was an angel -- 7lbs 12 oz,
the most beautiful blue eyes, tiny pink fingers. She slept soundly, and she
barely cried. She was perfect. And then, on her second day of life, we learned
that she failed her newborn hearing screen. The nurse informed us that
often the tests were inaccurate and that it was common for babies born via
cesarean to have a buildup of fluid in their ears. She was tested again before
we left the hospital. One ear passed, one failed, so we had to come back
in another week. My husband and I didn’t think much of it as we were
completely enamored and enjoying life with our two daughters.
A week later, we went back for another test. She failed. Again, we chalked it
up to fluid and poor testing circumstances. A month later, we returned for a
more detailed test, an auditory brainstem response or ABR. I’ll never forget
4

sitting in the audiologist’s office
and her giving us the diagnosis. Our
daughter had severe to profound
hearing loss. The severity and
magnitude of those words didn’t
quite register with me.
“Are you saying she’s deaf?” I had to ask
her. The audiologist responded, “You
could say that, yes.”
I was devastated. I felt as though life, as
I knew it, was over. What would raising
a child with additional needs look like?
Would she be okay? What would happen
to my career? What would people think
of her? Of me? Did I do something to
cause her hearing loss? How would my
older daughter cope with all of this?
I was spiraling, but I knew that somehow,
I had to bounce back and be strong
for Ellie and my family. I had to push
the negativity aside and get through
the fear and uncertainty. The following
principles helped me find my bearings
and get back on track. I’m sharing them
for anyone who’s in a difficult place and
needs a little help finding their way.
Helplessness Gives Way to Courage.
After Ellie’s diagnosis, every
insecurity I had about myself seemed
to fall away. I didn’t have time to
over-analyze my weaknesses
anymore. At once, I was completely
vulnerable, but as I became her
advocate, my strength, fortitude,
and resilience grew.
When the shelter-in-place order
began, I started teaching kids yoga
classes online because I wanted to
provide a way for parents and kids to
connect and stay active. Ellie also had a
positive response to yoga acting
out different animal sounds and
combining language with movement.
This inspired me to use it as a tool to
teach her and other kids with similar
diagnoses. What started out as a
fulfilling passion blossomed into my own
business, Hop Along Yogi Kids Yoga,
something I never dreamed
of or even considered doing, but
overcoming my fears associated
with Ellie’s diagnosis gave me the
confidence and courage to tackle
any challenge thrown my way. I kept
reminding myself that it’s not about
where I’ve been but where I’m
about to go.
Tiny Victories
Create Big Momentum.
When your child has a health issue,
you become hyper aware and hyper
consumed by their progress. Along the
journey, you value mini-milestones,
even more than the great, big milestones.
With Ellie, her first word was
so amazing but the initial babbles, the
learning-to-listen sounds (moo, shhh,
ahhahh) created an even greater sense
of pride because I knew we were on the
right path. We celebrated (and will
continue to celebrate) every tiny victory
because each mini-milestone is the
catalyst to an even greater achievement.
5

inging mindfulness,
strength and joy to all kids
Community is Everything.
It was overwhelming and isolating when I found out about
Ellie’s hearing loss. I shut down and shut people out. But
when I opened up to my tribe, they pulled me through the
outlet I needed to better balance the needs of my children
with my needs and share the benefits of yoga with more
people. Through this experience, I found more fulfillment
and pride than I ever anticipated making me feel whole again.
hard times. I surrounded myself with positive people, a team
of supporters — friends, therapists, Facebook groups who
understood what I was experiencing, and I shared my story
with them, and asked a lot of questions. The more I relied
on people, the closer I felt to them which got me through
the valleys.
Over the last two years, I’ve experienced my share of
detours, but through them I’ve met new people, formed
deeper personal connections, challenged myself in new
ways and spent more time with the people I love. Now, my
life doesn’t feel so much like a detour, it just feels like I
travelled off the beaten path and discovered something
Me-Time Makes Better We-Time.
truly wonderful.”
I found myself thrust into a life-changing situation, one that
I didn’t plan for and never saw coming. I was completely
consumed by Ellie’s diagnosis and believed that the more
I gave, the more I could ensure her success. But slowly the
stress of constant care took its toll on my personal health,
emotional state, and relationships. For me, starting Hop
Laura Kowalski is owner and founder of Hop Along Yogi
Kids Yoga. She teaches weekly, “live-online” classes,
utilizing a flexible pay model to make classes more
accessible to all. Visit www.hopalongyogi.com
for more information. M
Along Yogi enabled me to re-ground myself. It provided the
6

School
@ Home
The pandemic has upended virtually
every aspect of life; including work,
recreation, and school. For many of us,
everything (or at least most things) are
now done at, or from, home. And for our
children, that includes school, so many
be, of course). There are people,
organizations and resources that can
help them set up and operate their
home-school and join with other
home-schooling families. One such
person is Jean Kulczyk, M.Ed
parents are, for the time-being, in effect,
home-schooling.
Jean has expertise and resources to
help families who home-school children
However, parents whose children are
enrolled in their district’s public schools
and are doing remote learning because
that’s the only option their district
currently offers are not home-schooling
per se. Home-schooling families are
those who have made a voluntary choice
to home-school their children and f
ollow the guidelines from the state
related to home-schools (which are
with special needs, or are considering
home-schooling. She wrote a Q & A
article about home-schooling a child
who has special needs, which is featured
on a home-schooling website,
www.illinoishouse.org/special-needs.
Other pages on the website address laws
& regulations, historic cases, and how to
locate home-schooling support groups
and resources.
considered private schools).
Jean Kulczyk can be reached by phone
Home-schooling families are not just
left on their own (unless they want to
at 847-662- 5432 or by email at
advocate4kids@gmail.com. M
7

I.E.P. &
Section 504
Accommodations
two sides of the same coin?
I.E.P. (which stands for stands for
Individualized Education Program)
is likely the most used acronym for
parents of the school-aged special
needs population, as it is the
gatekeeper to special education
services in the public-school
system; nobody can enter without
one. However, it is not the only
avenue to accommodations for
children who need them. Section
504 also can come into play for
students who don’t qualify for
an IEP.
The following is excerpted from a
podcast by Catherine Whitcher:
www.catherinewhitcher.com/
blog/podcast504vsIEP
• With an IEP, the basis is IDEA law.
• An IEP has eligibility categories;
a 504 plan looks at additional
supports, accommodations and
modifications to meet a child’s
needs rather than eligibility
categories.
• An IEP stops at age 22; 504 plan
has no age limit and can follow
into college and the workplace.
• An IEP addresses a child’s
deficit with specific goals and
specialized instruction; a
504 plan addresses only
accommodations, modifications
and supports needed for equal
access in the workplace or
school setting.
• Both IEP and Section 504 need
a thorough annual review and
can be changed as often
For a 504 plan, you’re dealing
with the section 504 of the
rehabilitation act of 1973.
• Both IEP and Section 504 have
as needed.
M
accountability systems set up
and are enforceable.
www.catherinewhitcher.com/
blog/podcast504vsIEP
Catherine Whitcher offers a
Master IEP Coach program; please
visit www.masterIEPcoach.com
for more information.
8

What’s for
Breakfast, Lunch, & Dinner?
For most kids,
asking what’s for breakfast, lunch,
or dinner is just a casual question;
sometimes asked just to see if they
can turn up their nose at the answer.
Furthermore, the act of eating itself
is just as casual; the ability to eat
whatever you want is usually taken
for granted.
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It’s not that simple,
however, for people who have dental or medical conditions
that make it difficult, if not impossible, to chew, swallow,
or digest food like the rest of us. This presents various
complications for these individuals. At the top of the list is
malnourishment and its effects. Feeding tubes, for example,
can clog up and not easily deliver the sustenance a growing
child (or an adult) requires.
So, what’s a parent to do? Julie and Tony Bombacino found
themselves in this predicament. Like many parents, when they
weren’t satisfied with the solutions for their son, they came up
with their own, which they named Real Food Blends.
Real Food Blends,
as the name says, is blended with real foods, without corn
syrup, preservatives, fillers, or a need for refrigeration.
The company provides 6 meal varieties for children and
adults. Five of the 6 meal choices include a form of meat or
dairy (namely beef, turkey, chicken, fish, eggs), as well as a
vegetable and/or fruit (peaches, carrots, squash, apples,
zucchini, green beans), and a starch (potatoes, oats, brown
rice). One meal choice is vegetarian (quinona, kale, hemp).
The product is covered by many insurance plans, and is
available without a prescription.
Reference: Real Food Blends website, realfoodblends.com M
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Play
for All
Inclusive
11
playground projects

“Children Learn Through Play” is a long-expressed
truism. Children go through stages of play, from solo
(playing alone) to parallel (playing alongside other
children) to cooperative (playing with other children).
Through play, children gain physical and social skills,
among other benefits.
In order to play, kids need somewhere to play.
For most children, one of those places is a
playground. However, for children with challenges,
going (or being taken to) a typical neighborhood
or community playground can be, at best, a
disappointing experience. The equipment might be
out of their reach, the playground surface may not
easily accommodate a wheelchair or other mobility
equipment, and so on.
Various organizations, including public and private
schools, and park districts, have met that need with
“inclusive playgrounds”. Typically, these projects have
been funded with both public funds and donations. In
the Chicago area, inclusive playgrounds can be found
in many towns, including Aurora, Bartlett, Lisle,
Naperville, New Lenox, Oak Brook, Downers Grove,
Barrington, Wheaton and South Elgin.
Some inclusive playground projects have been
spearheaded by parents advocating for their children.
One such project came about through the efforts
of parent Peg Chaidez, in response to her son’s
experience getting stuck and left alone in his
wheelchair on his elementary school’s playground
when the bell rang.
Peg founded Dream Build Play Experience
(dbpexperience.com), and teamed up with Sharon
Duncan of Abide in Me (abideinme.org), an
organization dedicated to helping people with
disabilities live active and engaged lives. The first
playground funded was built at her son’s school in
Downers Grove.
References: Chicago Special Parent issuu.com/
chicagoparent/docs/chicagospecialparent_0819 and
issuu.com/chicagoparent/docs/special_parent_
summer_2015 M

National Handwriting Day
My friend Stacey Montgomery just sent me
an email letting me know Jan. 23 is National
Handwriting Day. She operates a business,
Stacey M design, that, among other products
and services, offers opportunities for children
to do journal writing, thank you notes, and other
activities to promote their social & emotional
wellbeing. She emphasizes the importance of
handwriting as “an effective and highly impactful
way to connect with others”.
Aa Bb Cc Dd Ee Ff Gg Hh
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1 2 3 4 5 6 7 8 9 10 11 12
For some children, however, handwriting
is not just an overlooked method of
communication in the age of computers,
cellphones, and email; but a difficult, if not
impossible, chore complicated by physical
or coordination challenges.
My older son, for example, had fine motor
skills deficits that made handwriting an
extraordinarily time-consuming task. And
legible handwriting? Pretty much impossible for
him. His first IEP mentioned “control deficit”.
The school district at the time sent nobody to his
first IEP meeting to explain what that meant. A
reading teacher friend of my mother later told
me that it probably meant my son had trouble
holding a pencil (rather than the temper tantrums
I had envisioned).
This program is used by therapists in a variety of
settings, such as public schools and private therapy
programs. Chicago area Timber Ridge Pediatric
Therapy, LLC, for example, lists Handwriting
Without Tears® as one of its services on
their website.
There are a variety of strategies and programs
to help children and adults (with or without
disabilities) develop and improve their handwriting
skills. Handwriting Without Tears®, for example,
For more information about Handwriting Without
Tears®, please visit ashleyjaynahwt.weebly.com
and/or lwtears.com/hwt
is widely used by schools, home-schooling
programs, and therapists. Handwriting Without
Tears® was developed by occupational therapist
Jan Olsen and takes into account developmental
needs for individuals of all ages when they are
learning how to write.
To reach Stacey Montgomery, you can visit her
website, staceymdesign.com. She maintains a blog;
several articles on the blog address challenges
related to the COVID-19 virus for children, teens,
and adults. M
Ii Jj Kk Ll Mm Nn Oo Pp
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it’s my BUSINESS
be creative
Adults with disabilities have many
challenges. At the top of the list, for
many of them, is finding or creating
meaningful, productive work. For some
people, the solution is to create a
micro-enterprise based on their
interests and skills. Income from this
business can supplement government
benefits for those individuals with
disabilities who qualify and are receiving
financial supports such as Supplemental
Security Income (SSI).
15

proposal for aGRANT
However, starting any business, including a micro-enterprise,
needs a business plan, start-up funds, and other
supports to become successful and profitable. That’s
illness that meets Social Security’s disability criteria under
SSI. The application can come from an individual or a team
of up to 4 members.
where organizations that can help support and finance
micro-enterprises come into play.
The next round of grants will not become available
until the Fall of 2021 and may be further delayed because
One such organization is Life’s Plan, located in the
Chicago area. Life’s Plan offers annual micro-grants to
of COVID-19 restrictions. Be sure and check our website
for updates in the fall of 2021: www.lifesplaninc.org.
qualified individuals to help them start a Micro-Enterprise.
I am pleased to introduce Consuelo Puente, a Life’s
Plan board member and Parent Advocate on the Grants
Committee, to tell us more about the micro-grant program.
To submit a proposal for a grant to start your own business
we have certain simple requirements. First of all, keep your
proposal brief, no more than 4 pages. We ask that you tell
us a little about yourself and who is going to support you
Hi I am Consuelo Puente.
in doing the business. We know that individuals with
disabilities may need the support from a family member or
I want to thank you for this opportunity to spread the word
about the micro-grants available from Life’s Plan.
paid staff of an agency and we take that into account in your
proposal. We ask that you give us an idea of what
your business is about and tell us how you
‘As a parent of two adult sons with
disabilities I faced the difficult question
of what kind of lives will my sons have?
What kind of work will be in their lives?
The answers do not come easily, I am
proud to be part of an organization
will use the money. A budget plan and a
timeline should be submitted as part of
your proposal. More details on the
requirements of the proposals will
be released next year before the
proposals are due.
that provides some families with some
great options. The micro-grants program
provides entrepreneurs with disabilities a
launching pad from which to get into the real
world of business and work. The grants can
be an award of up to $2000, depending on the
business plan submitted to Life’s Plan.
I find that the biggest problem
in submitting a proposal for our
micro-grants is coming up with an idea
for a business that an individual with a
disability can do. Of course, it is easy to say
“be creative” or “think outside of the box”.
Not so easy to put that advice into action. What
Only adult Illinois residents are able to apply and
must be considered to have a disability or mental
I find more helpful is to think closer to home.
My sons and I started a business based on our
think outside the box
16

micro-enterprises
life long habit of running errands together. We offered
to run errands for a local woman’s shelter and ended up
buying their toilet paper and other essentials from Sam’s
The opportunity to try and start a business of your own is in
your hands. We at Life’s Plan look forward to reading about
your business ideas.
Club. My sons loved the free samples at Sam’s Club and
were able to carry in the supplies to the shelter. Of course,
my sons had prepared from earliest experience to run
For questions on how to prepare a Grant application please
contact me, Consuelo Puente, at ctpuente@hotmail.com
errands so it was a business they were comfortable doing.
Questions on how to plan a Micro-business model or
The business idea can come from something you are
manage a successful Micro-business: contact Matthew
already doing or did in the past. Or the idea can come
from something you like to do. Keep in mind it’s your
business, so it has to be something you want to do more
than just once.
Koupal at mkoupal@aol.com
M

ight
at home
For some people with physical, intellectual, and/or sensory
issues, living as independently as possible is a challenge.
Whether they live in a congregate setting such as a group home
in their community or an apartment (with or without roommates),
a number of these people need support of one kind or
another. And with the current restrictions and precautions due to
COVID-19, in-person support can be problematic. To a degree,
technology has stepped in to fill some of the gaps.
The companies listed here are among those that provide
technology support, including SimplyHome, AbleLink Smart
Living Technologies, Sengistix, LLC, and Night Owl Support
Systems, LLC. Here are a few highlights about them.
18

SimplyHome:
“SimplyHome’s sensor-based systems can
adapt over time to support independent
living skills while alleviating concerns
about cooking safety, medication adherence,
and the risk of wandering or falls.
Caregivers are notified only when they are
needed, promoting the highest level of
independence possible for the individual.
SimplyHome works directly with selfadvocates,
families, caregivers, provider
organizations, and state and national
agencies with the mission to empower
independence through innovation.
To learn more www.simply-home.com”
Thanks to Emily Danciu-Grosso of Simply-
Home for that description. SimplyHome
can also be reached at its toll-free number,
877-684-3581.
Night Owl Support Systems, LLC:
This company provides portable safety
devices, including smoke and carbon
monoxide detectors, sensors to detect
flood/moisture, temperature, motion/
pressure, movement, fridge/freezer
opening, and door/window security.
Personal pagers are provided. Christopher
Patterson is the Owner/Founder of Night
Owl Support Systems, LLC.
Sengistix, LLC:
“Sengistix, LLC is a full-service remote
support technology company. SENS
(Secure Environmental Network Support)
and SENS Vision products provide a
hardware and software-based solution,
with 24×7 system monitoring, caregiver
monitoring backup, installation, training,
and customer support. Sengistix provides
a range of high-quality products and services
to meet the unique needs of
individuals of all abilities.”
AbleLink Smart Living Technologies:
This company provides technology
Thanks to John Kehr, Operations Director,
for that summary. Sengistix, LLC is
located at 1444 Northland Dr, Ste 150
Mendota Heights, MN 55120. Phone
support to help people accomplish various
life skills, including (but not limited to)
cooking, navigating public transportation,
and scheduling their day.
number is 651-695-5817.
19
I’d like to thank/acknowledge Susan Hudkins for providing website links to the companies who
provide technology support to help people become and remain more independent in their homes
despite physical, intellectual, and/or sensory challenges.
M

Check out our other Magazines!
Summer Issue 2020
beyond disabilities
Summer Issue 2019
Fall Issue 2019
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
20

Helping Individuals
with Disabilities
& their Families
Achieve & Celebrate
Events & Milestones
in their Lives
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
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.
developmental disability, autism, hearing impairment,
vision impairment, and more!
Check out our website: milestonesmagazine.net
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