DSAGT Volunteer Nominated for
National Philanthropy Day
Yesterday the Association of Fundraising Professionals of Northwest Ohio (AFP NWO) celebrated their 33rd Annual National Philanthropy Day. The event is way to show gratitude to individuals who have significantly contributed to the welfare of the communities all across Northwest Ohio and Southeast Michigan. Each year, the Down Syndrome Association of Greater Toledo selects a volunteer who has made a significant impact on the organization.
This year, DSAGT nominated volunteer, Amanda Fintel. Amanda has been working with the organization over the past few years on multiple projects. She has organized the Diggin’ for Down syndrome fundraiser with Perrysburg High School Volleyball for the past three years, she currently serves on our Program Committee and she also served as an instructor for our Smart Start Kindergarten Prep Program this past summer.
Amanda is an Intervention specialist at Perrysburg Schools and is also currently the Assistant Varsity Volleyball Coach for the Perrysburg High School girls’ volleyball team. When she’s not busy teaching, coaching or volunteering, she enjoys spending time with her family, especially her brother Chad, who has Down syndrome.
You can learn more about AFP NWO by visiting their facebook page or their website: community.afpglobal.org/afpnwo. And, if you're interested in volunteering with DSAGT, you can email us at email@example.com for more information.
Amanda, we are so grateful for all that you do for us here at DSAGT!
Finding the Fire behind the Diagnosis
by Jess Casper
With a prenatal diagnosis I thought I would be totally prepared for what was to come. Little did I know that no matter how much research I did, nothing was going to prepare me for becoming a mom to a little girl with Down syndrome. Gabriella Marie was born at 37 weeks via an emergency C-section after 17 hours of natural labor because her heart could no longer withstand the pressure of labor. 16 months later, multiple hospitalizations, 5 surgeries (1 upcoming), and 5 weekly therapies, Gabriella has taught me more about myself than I could have ever imagined.
Before Gabriella was born I was just a typical working mom. Taking her 3 older kids to school/daycare and going to work, going back to pick them up and having typical evenings at home as a family. I was in a job that wasn’t bringing joy to my life but was flexible with my schedule so it was easy to keep with the same routine. It wasn’t until Gabriella was here that I truly found what made me happy and what lit my soul on fire.
I found DSAGT at just the perfect time in my journey. Gabriella was about 2 months old and was newly home from the NICU. I signed up for our first Buddy Walk where I started to meet other moms with kids that had Down syndrome. From the Buddy Walk, I just always kept my eyes out for opportunities where we could participate. We attended the First Steps group where we met more friends and got to learn more about how our kids grow and develop. This group was a big changing point for me. I loved the feeling of being together with the other moms. I fell in love with the joy and compassion the kids and parents had for the small things in life. I loved watching how the kids learned, processed what was going on, and interacted with one another and I knew I wanted to do more.
With so much encouragement from Hanna and Krista I started a moms’ night out group that meets via Zoom (thanks COVID) twice monthly, and I think I can speak for all of the moms when I say this group has been so amazing and such a wonderful support. All moms are welcome to join as we talk about whatever is on our hearts for the week. Sometimes it is our kid’s behavior, their development, schooling, or sometimes we just talk about how much we really need a good night’s sleep! It is our safe space to just be us and have moms that know how difficult being a special needs mom can be.
Without DSAGT I would have never found this group of moms, that I now call my best friends and I would have never found the support for this fire inside of me that helps me advocate for Gabriella every single day.
Companions on the Journey
by Maggie Viertlbeck
Annie's birth story would not be complete without sharing our friend's story too (with their blessing, I assure you)......
Matt and I met Catherine and Branko 5 years ago when the four of us served on the Core Team for our parish youth group, Lifeteen. During this time, Catherine and I had sons within 3 months of each other, (our Max, #4, and their second son, Niko), and their oldest son, Ben, had developed an adoring crush on our Emma. He even wanted to build her a castle! We've arranged the wedding for 2030. Haha
Flash forward to 2013. Catherine was one of the first people I told about my pregnancy. First and foremost because she is one of the most faith-filled and faithful people I know. When you ask her to pray for you, you can guarantee that she will pray for you. Period Anyway, before I even had the slightest indication that this pregnancy would present so many challenges, I told Catherine and asked for her prayers.
A few weeks later, in the school parking lot during dismissal, I could tell she was not herself. I asked her a few times what was wrong, and she ended up telling me that she had taken a pregnancy test that morning and it was positive. Positive wasn't always a "positive" for Catherine. Instead it left her anxious and uneasy. She had already suffered a miscarriage between Ben and Niko, and 2 more since Niko, and in her mind another "negative" was likely to follow.
And so I began to return the favor and pray for my friend (falling short, no doubt)
Time moved on, and her pregnancy progressed without major incident, although at one point we were both chatting about how our progesterone shots (and later suppositories) were going. Pregnant women have the best conversations! We would also share our cravings and try and guess who was having what. Her ideal menu consisted of what I liked to refer to as "meat with a side of meat," whereas the mere mention of burgers, steak or bacon turned my stomach. I prefered something more like pizza with a side of ice cream, with a pb&J in place of a salad and donuts for dessert. Whatever it was, we were having the opposite, I was sure! And right! We found out girl, and a few weeks later, Catherine and Branko learned they'd be welcoming their 3rd carnivore son, Vincent. We were due only 2 weeks apart. I kept telling Catherine I was sure these two were already friends in Heaven's waiting room.....
I won't reitterate what happened during the second half of my pregnancy with Annie, but I can't reitterate enough how kind, helpful, strong, loving and present our friends and family were. And there was Catherine, at the helm, always checking in on ME, even though she was still filled with her own worries and anxieties over her fragile pregnancy history.
On November 9, Annie's actual due date (she was born November 4), I was sitting with her in the NICU of the Toledo Hospital when I got a text from a mutual friend that Catherine was in labor at the same hospital. Yay! She was literally right down the hall from me! I couldn't wait to hear of Vincent's official arrival and go meet him! Catherine texted me much later that Vincent was indeed here...all 8 pounds, 2 ounces of him (it had to have been the meat!) I was getting ready to head home at the time, but I assured her I would visit them the next day.
That night, I texted her again, just to check in and see how Mama and baby were doing. She said Vincent was doing great...his vitals and blood sugars were all good (she had gestational diabetes), but he was scheduled for an echocardiogram the following day.
"Whaaaat?" I asked. "Why?"
"Vincent has Down Syndrome," she replied.
I've never had my knees go weak. Not when Matt proposed. Not when my sister called to tell me that Mom had died. Not even when they told me my own child likely had Down Syndrome. But my knees went weak and I nearly fell when I read that message. It still makes the hairs on my arm stand straight up with I think about it. They had no indication. Zero. What are the chances?
I went to 7 a.m. Mass the following day and sat with a Deacon of our parish, who happens to be a good friend of ours (and of Catherine and Branko). Although it probably wasn't my place, I couldn't help but share the news with Joe. I will forever love his response: "Wow! (equally as weak in the knees!) The Lord always gives us companions on our journey...He's just not usually this quick or this obvious!"
And he's so right. They are companions on a journey. A journey that not everyone else, try as they might, understands. A journey that neither of us signed up for, but one I'd never turn back from now that we've embarked. A journey that is sometimes scarey, often unknown, but always beautiful. It's a beautiful journey, and so much better with friends.
Annie and Vincent, you are going to change the world. You have already begun to change me......
Three Local Children Featured in National Down Syndrome Society Video
Three local children appeared in the bright lights of Broadway this past Sunday, September 21st, as part of the National Down Syndrome Society's annual Times Square Video presentation. The featured photographs highlight children, teens, and adults with Down syndrome, reminding the world in a very big way about the contributions and milestones of people with Down syndrome. These collective images promote the value, acceptance and inclusion of people with Down syndrome.
“This video is a terrific way to showcase some of the incredible individuals with Down syndrome living in our communities across the country,” says NDSS President & CEO Kandi Pickard. “It is something the community looks forward to every year.”
The photos of Royce Keys, Harper Szymanski and Blakely Price were all selected as three of 500 photographs that appeared in Sunday's video, streamed on NDSS social media from the heart of Times Square.
The Times Square Video presentation kicks off Down Syndrome Awareness Month in October. The video presentation will be followed by the New York City Buddy Walk, which will take place virtually due to COVID-19. Buddy Walk events will be held virtually in more than 150 cities across the country, as well as select international locations, this fall with over 325,000 people participating around the globe.
Locally, the Toledo Buddy Walk, presented by Little Caesars, will be taking place virtually on Sunday, October 18th. The event will be celebrated in a walk your way style with individual teams celebrating their loved one with Down syndrome in the style of their choice. Over 40 teams are expected to join the Buddy Walk celebrations this year.
All proceeds from the 2020 Toledo Buddy Walk directly benefit the programs and services of the Down Syndrome Association of Greater Toledo. The Association serves over 450 individuals with Down syndrome and their families across 17 counties in Northwest Ohio and Southern Michigan. If you would like to learn more about the Down Syndrome Association of Greater Toledo you can visit www.dsagt.org.
The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. NDSS programming includes the National Advocacy & Policy Center, which seeks to create systemic change through engaged advocacy; the National Buddy Walk® Program, which honors and celebrates individuals with Down syndrome in local communities across the world, and other programs that provide support, informational resources and community engagement opportunities for individuals with Down syndrome and those who love and support for them. Visit www.ndss.org for more information about NDSS programs and resources.
Down Syndrome Association of Greater Toledo Hosts Annual Golf Outing
The Down Syndrome Association of Greater Toledo, a 501c3 non-profit charity dedicated to supporting individuals with Down syndrome and their families, is hosting its annual charity golf tournament on Sunday, August 16th at Bedford Hills Golf Club in Temperance, Michigan.
This is the first year that the tournament will be hosted under its new name, the Danny Celian Memorial Golf Tournament. “In early 2019, our friend Danny passed away and his loss has been deeply felt throughout our entire DSAGT community. We wanted to do something to keep his memory alive and now we’re able to do that every year through our golf tournament,” says Krista Huff, Administrative Director at the Down Syndrome Association of Greater Toledo. “Our golf outing is an opportunity to shine the spotlight on our amazing community of individuals with Down syndrome, like Danny, and additionally, raise funds to help support them and their families all across Northwest Ohio,” adds Program Director, Hanna Fotsch.
The Association welcomes any and all businesses and organizations to participate and sponsor the event. All proceeds raised will directly benefit the Down Syndrome Association of Greater Toledo and help support the Associations current programs and services such as New Parent Outreach, First Steps Baby Group, Smart Start Kindergarten Prep, The Learning Program for preschool and young school agers, family outings, life skills classes and dances for teens, and much more.
The format for the tournament is a 4-player Scramble. Prizes include Longest Drive and Closest to The Pin contests, in addition to prizes for the winning teams. Each golfer will also receive a shirt, golf outing gift bag and a lunch. The Association is working closely with Bedford Hills Golf Club to ensure that the event is in line with all guidance from state health officials and are making slight changes to ensure all golfers stay healthy and have a great day of golf. More information about the tournament, including online registration and sponsorships can be found on the Association's website at www.dsagt.org/golf.
About the Down Syndrome Association of Greater Toledo
DSAGT is a 501 C-3 non-profit organization established in 1983 that has evolved from a small support group in the basement of parent's homes, to a continuously growing organization, meeting the changing needs of individuals with Down syndrome and their families. DSAGT serves 17 counties in northwest Ohio and six in southern Michigan, serving over 450 families in that area.
The mission of the Down Syndrome Association of Greater Toledo is to empower all individuals with Down syndrome to achieve their goals and reach their fullest potential by providing support, education and advocacy not only for the individual, but also their families and communities. The Down Syndrome Association of Greater Toledo envisions a community where all individuals with Down syndrome are accepted, included and given limitless opportunities to pursue their dreams as respected members of society.
Board Member Spotlight-TJ Miller and Down for the Ride
When did you join the DSAGT board of directors?
-I first joined the board in 2015.
What do you enjoy most about being a part of DSAGT?
-I most enjoy knowing that I'm making a difference in the community and for individuals with Down Syndrome.
Why do you think it's important for families to be involved with DSAGT?
-It a nice way for families to meet others who are going through the same life curves as you. DSAGT also provides many opportunities for families to interact and get together as well as provides important resources for the families.
Tell us a little more about Down for the Ride.
-It started in 2015 kind of as a joke but turned into us wanting to build a community center for individuals with Down Syndrome. Over the last five years we've had thousands of riders and raised almost $100,000 with our end goal to build a community center to help teach individuals life skills and also feel safe in a place around their own peers and to meet new people.
What's your advice to anyone interested in joining the board of directors and DSAGT committees?
- Come in with an open mind, be willing to learn new things.
-I most enjoy spending time with my family and friends.
This year's Down for the Ride event will be taking place on July 25th with registration beginning at 9am and the Ride starting at 11:15am. The event will begin at Royal Bar located at 3012 Woodville Rd. in Northwood. Registration is $25 per motorcycle and $10 for any additional passengers. You can also register your carload for $35 if you do not have a bike. If you have any questions please feel free to reach out to TJ Miller at 567-322-7621. For more details and to register visit here.
Close your eyes, clear your mind, and concentrate on this phrase:
What are the words and images that come to mind? For some parents, toilet training was easy. For others, not so much. Potty training can be very difficult for some children and many parents become easily overwhelmed and frustrated.
As a behavior analyst, I’ve treated many children with potty training challenges. Although it seems bizarre, toilet training is one of my favorite focuses in behavior therapy. I absolutely love toilet training because the outcome is simple: either you do it appropriately (eliminate on the toilet) or you don’t (have an accident). Of course, there are many curves and obstacles that might occur during the toilet training road trip, but the end goal is the same for everyone – independent toileting. I’ve had the pleasure of training children from the age of 3 to the late age of 19, and it’s an amazing feeling to have parents say, “I never thought he could do this” at the end of therapy.
So, if you’re on the journey of toilet training and you’ve hit a few road closures or if you haven’t yet mapped out your voyage, hop in and buckle up!
The average child is ready to begin toilet training around 18-30 months of age. University of Michigan states that by 3 years old, 98% of children are toilet trained during the day. (Nighttime training is a completely different story and could have a blog dedicated entirely to it. For the purpose of this blog, we will focus on day training only.)
How do you know when your child is ready to begin training? Typically, when kiddos are ready to begin the process, they show an interest in the potty, can stay dry in their diaper for at least 1 hour at a time, have some form of communication skills, have predictable bowel movements, and demonstrate some form of physical signs during elimination (squatting, running away, and glazed-over eyes). Please keep in mind, though, not all children will demonstrate these readiness skills. Children with autism and Down syndrome, for example, may not demonstrate the readiness skills similar to their peers. This does not mean you should wait until they are “ready”. For some children, they will never demonstrate these signs, and you’ll be waiting forever. The first toilet training case I ever had was a 19 year old with autism. The caregivers continued waiting until he was ready to train, but he never seemed to be. Overnight, it seemed, he turned 19.
Toilet training can be a lengthy process, as you may know. Some children may achieve this skill immediately, and others might take several months. When starting a toilet training plan, I always recommend that families are able to commit to at least 3 months without major changes. If a new baby is coming, a change of homes is anticipated, or a big vacation is planned, wait until after these events have occurred.
Once you’re ready to start, you’ll want to first take data on your child’s current toileting behaviors. Do this BEFORE you remove the diapers/pull-ups. In order to do this, simply record whether he is wet or dry every half hour. This will give you a rough idea as to his typical toileting pattern. Most people show a pattern in their toileting behaviors, and this can help when scheduling toilet sits in the future. Once you’ve taken data for 3-10 days, you’re ready to begin.
· Underwear (lots of it!)
· Extra clothing
· A small insert for the toilet seat (if your child is smaller)
· A footstool to allow for a 90 degree angle at the knees when sitting
· Preferred beverages (not including milk)
· Preferred toys that can be used during toilet sits (books, iPad, etc.)
· Strong reinforcers (small favorite toys, snacks, or other tangible items that are not available during any other part of the day. This is very important – if the items are available freely throughout the day, the child has no incentive to participate in the process.)
· Schedule of toilet sits. Once you’ve taken data on your child’s typical toileting times, you can use this information to predict when she might eliminate. I typically start toilet sits every 30-60 minutes, with longer periods of time after successes.
1. About 15-20 minutes prior to the scheduled sit time, provide your child with about 6-8 ounces of a preferred beverage. This will increase the likelihood that your child will need to eliminate.
2. At the scheduled toilet time, communicate to your child that it’s time to use the bathroom. ***For children who are highly resistant to even entering the bathroom, you’ll need to start with a pairing procedure first. Essentially, you’ll want to engage your child in fun activities that occur just outside or around the bathroom, while gradually moving yourself into the bathroom. During this time, no directives are given regarding toileting. You’re simply making the bathroom a fun place to be!
3. When you enter the bathroom, prompt your child to pull his pants down and sit on the toilet. It’s often helpful if your child is wearing sweat pants or other easily-removable pants during the initial training sessions. Depending on your child’s developmental level, you can provide physical assistance during this step if needed.
4. While sitting on the toilet (and making sure knees are at a 90 degree angle with the stepstool), provide your child with books, iPad, or other small objects. Tell your child to “go potty”.
5. If he successfully eliminates, say “Great job going potty!” and provide him with a small treat (favorite toy, snack, or other item). While the germophobe in me hates this, it’s very important that the reinforcer is given to your child immediately after he eliminates and is still sitting on the toilet. This will help him understand that eliminating on the toilet is the appropriate response. For example, if Johnny urinates on the toilet, say “Great job going potty!” and give him a Skittle immediately.
6. If he does not successfully eliminate, say nothing and prompt him to pull up his pants.
7. Whether your child eliminated or not, it’s always a good idea to practice hand washing!
8. When accidents occur (they will!), change your child quietly, without making eye contact or saying anything. If able to do so, prompt your child to assist in the clean-up (wiping self, throwing away diaper).
9. After several days of success, begin to fade the reinforcers (Example: provide one Skittle after two eliminations, then one Skittle after three eliminations, and so on). You’ll want to make sure you’re not fading too quickly or the skill will not be maintained.
10. During the entire process, make sure to take data! Identifying times of accidents, times of successes, and other issues will help you to adapt your sitting times and procedure. This will create an individualized experience for your child, which is more likely to be successful.
And that’s it! Easy, right? Of course not. Remember, toilet training is a journey. It’s playing the game of Candy Land and constantly being sent back to Mr. Mint, Grandma Nutt, and Lord Licorice. Some players are lucky – they pick color cards each time (sometimes doubles!) and never have to move backward. Others aren’t so lucky and experience the two-steps-forward, one-step-back (or one-step-forward, two-steps-back) game of potty training.
At the end of the day, remember to keep pushing on! While there may be setbacks, independent toileting is a goal for all of us. Support one another and consult a professional when needed. We are always here to help!
The Down Syndrome Association of Greater Toledo (DSAGT) is excited to announce that they are one of 17 local community based organizations to receive an emergency response fund grant from the United Way of Greater Toledo (UWGT). Since the Emergency Response Fund’s establishment, hundreds of individual donors and nearly 40 corporate partners, businesses and community institutions have given to UWGT, totaling just over $700,000.
DSAGT is the recipient of a $4,500 grant that will be used to provide food assistance to 60 of their families who may be experiencing financial hardships due to the COVID-19 outbreak. “It’s important for us at DSAGT to continue meeting the ever changing needs of our Down syndrome community, especially during these difficult times and thanks to the United Way, we’re now able to assist our families financially in a way we didn’t think we could” says Administrative Director, Krista Huff.
In addition to the DSAGT Food Assistance Program, DSAGT’s Program Director Hanna Fotsch has been working to move as many DSAGT programs to a virtual format as possible to ensure families can stay connected and continue to receive DSAGT services. Current virtual programs range from parent social groups, to physical movement and music programs, to Kindergarten prep programs. “Although we are missing seeing our families face to face, we have a real opportunity with virtual programs to still support them in meaningful ways and in addition, we can reach our service area in a way we never could before” says Hanna.
If you would like to apply for a grocery gift card from the DSAGT Food Assistance Program, you can access the application here and return completed application to Hanna Fotsch, Program Director at firstname.lastname@example.org. If you need additional services or have questions you can call DSAGT at 567-742-4004 or email email@example.com.
We recently welcomed Ali Kingston to the DSAGT Board of Directors. We're so excited to welcome her to our community and wanted to share a little bit more about our newest board member.
Tell us a little more about your educational background and professional journey.
I attended the University of Memphis, in Memphis Tennessee, where I received my bachelors degree in 2016. After graduating, I moved to Washington, D.C. to attend The George Washington University Law School. I spent my law school career interning and working in the public interest sector and graduated with my J.D. in May of 2019. I am currently a staff attorney at Legal Aid of Western Ohio, Inc.
Why did you want to join the DSAGT board?
My high school had a peer mentor program, which allowed students to be a peer mentor to a life skills student during their senior year. This was an incredible program and I am grateful I was able to participate. My mother is a teacher and has taught special education students. This community has been part of my life for many years. When I moved to Toledo and there was a board opening and DSAGT was welcoming right from the beginning, it felt like a no brainer that this was the board for me.
Why do you think it's important for young professionals to be involved in the community?
The Maya Angelou quote, "People will forget what you said, people will forget what you did, but people will never forget how you made them feel," is extremely accurate for young professionals. We are going to have incredible careers but to make that actually meaningful, we have to give back to the community. I think it is important for young professionals to think about what they want from a board or volunteer experience and actively seek that in their community.
What do you enjoy most about being a part of DSAGT?
I wanted a board experience where I got to be active in the planning and fundraising of events while feeling part of the community as a whole. DSAGT gave me all of that. There are so many new and fun events being planned to engage young professionals and I am really excited to see my peers wanting to give back to this organization. DSAGT is a small organization so it is really rewarding to be able to see the impact of the work being done for our families.
What are your absolute favorite things in this world?
TRAVEL. I do not live in the same state as my family, and my friends live all over the country, so I love to travel to see them. I also love seeing new places and meeting new people, that is definitely the extrovert in me. My best friend and I periodically talk about packing up and traveling the world, maybe one day we will do it.
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