What does Easter mean to you?

Meghann Easter Outfit

Everyone celebrates Easter for various reasons. Christians celebrate Easter Sunday as the day of Jesus Christ’s resurrection.  Department stores show us what it means to them by stocking the shelves with toys and candy for parents to purchase. Children go to bed with the excitement of waking up Easter morning to find decorated eggs and candy hidden by the bunny.

Can you relate?

Easter BIG bonnet

Easter has meant all of these this to me at one time or another. 

When I was raising my daughter I loved going shopping for an

Easter dress and bonnet. Of course, I used any excuse to buy

another adorable dress for Meghann.

The tradition of decorating eggs, and filling a basket was

always one that I enjoyed. I love to be creative and Easter

would provide me the perfect opportunity to put my talents to

work. I might have been a little over zealous because Meghann

wasn’t usually as excited as I was to get our hands sticky. For

anyone who knows Meghann you probably understand.

(Yes, Crystal you did FINALLY convince Meghann to lick her fingers!!)

Meghann was never able to walk independently. She began using a

wheelchair at a young age.

Since she was an only child and in a wheelchair it wasn’t a big deal

for my family to not have an easter egg hunt. Everyone in my family

 made sure she had a huge basket of goodies. In all honestly, all

Meghann really cared about was getting new puzzles. And she was

never disappointed by me or my family.

Mostly Meghann and I lived in a world where everything was

accessible until a holiday approached. Our home, van, school, and

 bus were all modified to Meghann’s life. When we had to venture

outside of those areas the challenges tripled. There were steps, small

doorways, cramped bathrooms, maneuvering and cousins who never

sat still. Easter was no exception when it came to  Meghann’s cousins

activities. They would run around, play outside, and leave her to spend it as a bystander sitting with

me. I helped her be a part of their world until she grew too big, and then we had to adjust to the

different worlds.

Easter chocolate all over Meg

When I see all of the  ideas for wheelchair users  on pinterest, facebook, and the internet  it makes me sad. I wish I had the power to grab Meghann and jump in a time machine. I would go back in time. Then I would insist on using the balloons tied to eggs instead of thrown on the ground where my little girl couldn’t reach.  Meghann could of participated with her cousins in the Easter egg hunt with a little modification.

Maybe in the big scheme of things that Easter egg hunt doesn’t really matter.  Meghann and I did everything that counted to us at the time. We shopped for her dress and hat. We attended church all dressed up where Meghann was showered with love and acceptance. Every year the Easter bunny left her plenty of candy and puzzles in a basket.  I think Meghann has done pretty well over the years, and I am sure she would agree. I have a feelling Meghann would be happy even if she didn’t get the new puzzle every year from the Easter bunny. Don’t you?

April 3rd Tuesday at 7 p.m.

Online Support Group Meeting for parents/caregivers of special needs

Children and Adults

Join other special needs parents, guardians and caregivers online every month as we come together
to share our concerns, experiences, knowledge and joys with one another.

Regardless how old your special needs  loved may be, there will be something for you in this support group.

If you are a seasoned parent/guardian/caregiver then consider paying it forward with your expertise. Wouldn't it be rewarding to pass on the power of knowledge to each other?

Join special needs parents, guardian and caregivers online every month

Where: Free safe online meeting place

When: The first Tuesday of every month Next meeting- April, 3

Time: 7 P.M. central

Why: To lend support to one another through sharing similar struggles, experiences and offering suggestions on solutions.

Topic:  What do you need as a special needs parent?

For more information contact:

Jill

jillianm1963@hotmail.com

815-866-3776

http://parentingcelebratingsmallsteps.blogspot.com/

https://zoom.us/ 

ID number for zoom- 815-866-3776

Phone in number- 646-558-8656

Next months meeting date- May 1, 2018

Below is the link to the audio of April 3rd support group meeting

https://zoom.us/recording/play/O4Nu_oouQ42lrkfKTjCZfEtNIwztF7hkY3iV8dxnH3yo_zlrHfT8vlFDlU9i555i

Meet Nicole

The March 6th online support group will welcome a guest speaker.  

Nicole Tingley is currently the Regional Director for Achievement Unlimited and Community

Living Options. A role which she has been in for the past 3.5 years.  Nicole is a graduate of
Western Illinois University with a Bachelor of Arts degree.

In the past, Nicole had always seen herself as a teacher. However, after completing several
observation hours, she quickly realized teaching between four walls on a daily basis wasn’t for her.  

Nicole started her career as a Qualified Intellectual Disabilities Professional (QIDP) for a 16 bed
Intermediate Care Facility for persons with Intellectual Disabilities (ICF/DD) in Galesburg, IL.
By running an ICF/DD group home, she was able to combine and utilize her leadership,
management and teaching skills.  

Nicole had found her calling.

https://www.facebook.com/#!/DDHomesNetwork

Visit our website at: http://www.ddhomes.net/index.htm

Copy and paste link below to listen to the online recording of this months meeting.

https://zoom.us/recording/play/koBLULNKbzqBNz0R6m7E_YFkJIkc2WcG_PXO8-ASCdX
-caDqpDzvCdkiw95d05wx

Nicole also has experience managing an 8 bed Community Integrated Living Arrangement
(CILA) program.

As the Regional Director, Nicole oversees the operations of 5 ICF/DD and 28 CILA homes
that all reside in Knox County.

On a personal level, Nicole has become well versed in sensory processing disorder after her
son, Kelton, was diagnosed at age 2.

Nicole has always and will continue to be a strong advocate for people with
intellectual disabilities.

Nicole lives in Galesburg with her husband, Tyler and her son, Kelton.

When: The first Tuesday of every month. Upcoming meeting- March 6,2018 at  7 p.m. central time

Where: Zoom  https://zoom.us/

1. One time registration

2. Sign in using the ID number  ( 815 866 3776) on laptop, Ipad, computer. Use video and audio or only audio.

3. Second option-  Call in free on your phone (646 558 8656)    

4.  Join in on the conversation or choose to just listen. Your choice.

   Topic: Nicole Tingley- Regional Director for Achievement Unlimited and Community

Living Options

Sign on and lend support to one another through sharing similar struggles, experiences and offering suggestions on solutions.

Feel free to contact me for more information:

Jill

815-866-3776

If you have any technical problems please text me. I will have support standing by the night

of the meeting.

Why?

In February the online support group meeting will be celebrating the one year anniversary.

I want to thank everyone for sharing each month. When you sign in and share your stories,
struggles, and experiences we make it easier for the parents of a newly diagnosed children.

I wanted the February support group meeting to be special, and I had to find the perfect guest speaker.

 I am excited to share with the group an extraordinary young lady who paved the way for intellectually and physically challenged individuals. Her name is Abbey Curran.

Abbey will join us Tuesday night Feb. 6th at 7 pm. on zoom.

Call in or sign up at zoom to be a part of the meeting and listen to Abbey share her journey.

Additional information is below about joining the meeting.

Abbey's story

 Abbey Curran was crowned Miss Iowa USA 2008. Born with Cerebral palsy, she became the first person dealing with a special challenge throughout her life to compete in the prestigious Miss USA competition.

Abbey grew up on a pig farm in the rural town of Kewanee Illinois.  She has never allowed her so-called disability to hold her back from her dreams for herself and for others. She lives by the motto, "If you can dream it, you can do it!"

Abbey entered her first beauty pageant when she was 16, despite being told she shouldn’t do so by everyone she knew. Taking part in the pageant gave her a new sense of confidence and was such an empowering experience that she determined to pass on the positive feelings she gained to other challenged girls. To do so, she established the Miss You Can Do It pageant for girls with disabilities who range in age from 5 to 25. Now in its 13^th year, the pageant has been incredibly successful in bringing Abbey’s basic message to its contestants and their families: that any journey, great or small, begins with two words: “I’ll try.”   

The Miss You Can Do It pageant remains a unique, annual event that imbues its young contestants with joy, confidence and pride. It’s so successful that, in 2013, HBO made a beautiful documentary about it (titled Miss You Can Do It) in which 

Abbey is prominently featured.                                      

                  

Abbey graduated from Saint Ambrose University with a bachelor’s degree in Communications. She spent the last year in nursing school. In recent years, she’s given motivational speeches at dozens of venues and events, from fundraising banquets for United Cerebral Palsy to colleges and schools throughout the country.

She has appeared on many TV shows, among them The Early Show, The Ellen Show, Katie with Katie Couric, Inside Edition, Access Hollywood, Extra, Fox and Friends, Fox News and CNN Headline News. She has also been featured in stories in also had an exclusive feature story in Peopleand Vogue.

In 2011, she was honored by the distinguished Susan G. Komen Foundation, which named her “Leader of the Future” and “Most Inspirational Woman in America.”  

In September 2015, HarperCollins published Abbey’s autobiography, The Courage to Compete.

Currently Abbey resides in Chicago where she is a medical sale rep.

                           Here is the link to Abbey's appearance on the Ellen show.

             https://www.youtube.com/watch?v=ohkySovPnZA

                                   Abbey discussing Miss You Can Do It. 

            https://www.youtube.com/watch?v=Unl4tz3RnYE

                                                      

Many of my friends know that I recently had foot surgery.  Before I scheduled surgery I decided to research the doctor who would be working on my foot. Yes, as my step-daughter has accused me of doing in the past to her, I creeped on my doctor.  I think I had good reason. Right?  He was planning on cutting my foot open!  It doesn't  take much today to find out about anyone thanks to google and facebook.

I am never surprised by how many special needs parents turn their situations into helping others. Read the short story below to find out how my podiatrist is giving back to the families of children who have complex medical issues in the area.  

Jeff, Suzanne, Marin, Garrett and Gabe

OSF Healthcare has partnered with Almost Home Kids to bring a transitional
home/respite home for medically complex children to Peoria.  There are only
2 in the state, Naperville and  in downtown Chicago with over 14,000 children
with complex medical issues in our state. This facility is sorely needed and will
be a great help to many and we can increase the footprint of the areas that will be
served. Our family is proud to be a spokes family. Our sons Garrett and Gabriel
have a still undiagnosed neurometabolic disorder.They are non verbal, wheelchair
dependent and feeding tube dependent, both with chronic respiratory issues
as well.

They are great blessings in our lives. Almost Home Kids has helped us in the past and we are so thankful and now look to give back. We are looking to raise 50,000 to help build out one of the patients rooms in honor of Garrett and Gabe. We know we can't do it alone.  Suzanne and I pledge 5,000 towards our goal.  Our wish is to have a plaque outside one of the rooms that reads Donated thru the generosity of family and friends of Garrett and Gabe Ruskusky! All tax deductible funds raised will go to the OSF Foundation for Almost Home Kids and anything we raise above 50,000 I will ask to be placed in the endowment fund that will help families without respite care coverage be able to utilize the help they need at Almost Home Kids.

We thank you for your support.

God Bless!

Check out the gofundme link to learn more about how you can help.

                     https://www.gofundme.com/almost-home-kids-and-the-ruskuskys

                                                         Online Support Group

When: The first Tuesday of every month. Upcoming meeting- February 6th  

  7 pm central, 8 pm eastern

Where: Zoom  https://zoom.us/

1. One time registration

2. Sign in using the ID number  ( 859 589 845) on laptop, Ipad, computer. Use video

and audio or only audio.

3. Second option-  Call in free on your phone (646 558 8656)    

4.  Join in on the conversation or choose to just listen. Your choice.

   Topic: Speaker-Abbey Curran

Sign on and lend support to one another through sharing similar struggles,

experiences and offering suggestions on solutions.

Feel free to contact me for more information:

Jill

jillianm1963@hotmail.com