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 email@example.com. If you need additional services or have questions you can call DSAGT at 567-742-4004 or email firstname.lastname@example.org.
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.
DSAGT Families and Friends,
The health and safety of our community remains our top priority. In lieu of the recent advisories issued by the state of Ohio, we have made the difficult decision to cancel all programs and events until further notice. This includes our Spring Party scheduled for Saturday, April 4. DSAGT staff and the Board of Directors will continue to monitor the situation. The DSAGT office will remain open and we will continue to provide resources and support via phone, email, social media and our website. If you have any questions or concerns, please email email@example.com.
Thank you for your understanding and be well,
The DSAGT staff and board of directors is aware of and monitoring the presence of COVID19 in the state of Ohio. We are paying close attention to the updates provided by the Toledo-Lucas County Health Department and the Ohio Department of Health. The health and safety of our constituents is our top priority.
In response to the recent advisories issued, we have decided to cancel our 2020 World Down Syndrome Day celebration scheduled for March 21st at Al-Mar lanes. At this time all other programing will continue as scheduled and we will be sure to issue updates as we decide whether or not to cancel additional programs in the coming weeks. In the meantime, you can follow these tips to help prevent the spread of the virus: social distancing, alternatives to shaking hands, vigilant handwashing (for at least 20 seconds), and staying home if ill.
Thank you and be well,
Can you believe we’re already half way through January?! At DSAGT we’ve been busy planning and preparing to make 2020 our best year yet!
These past few weeks we’ve been meeting with each one of our 17+ county boards to introduce ourselves and share more about DSAGT’s programs and services. It’s our first step to ensure that we are reaching as many families as we can and working to find ways to best serve them. We hope that through these meetings we can collaborate with our county boards to make DSAGT programs and services more accessible to our families all across Northwest Ohio.
We’ve also been busy this month with some new and returning DSAGT programs. This past week we had our first session of our Cooking Matter’s class. This is DSAGT’s second year partnering with the Promedica EBID Institute to bring this program to individuals over the age of 13 with Down syndrome. For six weeks, participants will be learning about basic nutrition, cooking skills as well as kitchen safety.
We’re also excited to announce DSAGT’s newest program “Down with the Beat” Music and Movement!” DSAGT is partnering with BeInstrumental to provide a music and movement class for little ones with Down syndrome between the ages 1-4. We will be hosting a preliminary workshop acting as the pilot for the program. Parents will be introduced to the various benefits of music for their child's development while their children engage in motor play and then everyone will gather for some music and some fun! For more information and to RSVP please visit our calendar.
Lastly, we’re excited to bring you our 2019 Annual Report. Last year was a big year for DSAGT. We saw the hiring of our second full-time employee, went through a major change in leadership, collaborated with Promedica to bring a Down syndrome clinic to Toledo and so much more! You can read more in our report here: DSAGT Annual Report.pdf.
We’re so excited to have you on this journey with us and look forward to making 2020 a wonderful year. Make sure you’re signed up for our monthly newsletter to stay up-to-date on all DSAGT events and programs and if you haven’t already, pop on over and follow us on Facebook and Instagram.
The Down Syndrome Association of Greater Toledo is fortunate to have supportive, strategic board members that help us attain our organizational goals in order to serve individuals with Down syndrome and their families living throughout Northwest Ohio and Southern Michigan! One of those board members is Krista Huff, who joined our board at the end of 2017. Recently, Renee Canfield, DSAGT Executive Director, interviewed Krista. Hear in her own words why she is involved by reading below. Thank you for all you do, Krista...we are lucky to have you!
I attended the University of Toledo where I received my Bachelors of Business Administration in Accounting in 2015. I then started working at Gilmore Jasion Mahler, Ltd. that following September in the Audit department. I’m currently a Senior Audit Associate working mainly in the not-for-profit industry and I’m studying for my CPA license.
I had been following a few families on social media who had children with Down syndrome, including the Avis family from California. After reading Heather Avis’ book, “The Lucky Few”, I knew I wanted to become a part of this amazing and inspiring community. A few months later, I saw that the board had openings and couldn’t help the feeling that this was meant to be.
I think there are so many reasons young professionals should get involved. For starters, you can really learn a lot about how an organization runs by being on a board, plus you can build some really great connections through the organization. Secondly, board diversification is a really hot topic right now and that includes adding young professionals from all different backgrounds, so these organizations are looking for them. Lastly, for me, when work gets hard or stressful, working with DSAGT brings me back to life and has really turned into a passion for me and I think it’s important for everyone to have something like that in their life.
When I’m not working or studying for the exam, I’m probably at a Toledo Walleye hockey game with my boyfriend or catching up on my weekly tv shows. I pretty much love all things media: movies, shows, music! I also love to travel and visit new places; I really hope to visit all 50 states and see more of Europe.
As a Toledo native and a sibling of somebody with Down syndrome, I am always excited to connect with families in the DSAGT community. Lately, my focus has been on raising awareness of sibling dynamics. My 18-year-old sister, Sara, has Down syndrome, and I believe she has had a significant influence on who I am today. In my adult years, I have examined my relationship with Sara from a broader perspective by talking to other siblings like me. Although everyone’s story is different, most people I have spoken with agree that having a sibling with Down syndrome is a life-changing experience.
For my senior thesis at the University of Michigan, I interviewed 19 non-disabled adults who have siblings with Down syndrome and analyzed their responses. I also coordinated a siblings workshop this spring where non-disabled siblings, or “sibs,” could mingle, play games, and share thoughts about their brothers and sisters with Down syndrome. In each setting, I noticed patterns that I thought parents and other members of our community may be interested in hearing.
For many of the people I interviewed, having a sibling with Down syndrome was not all sunshine and roses. For example, they mentioned feeling embarrassed, because sometimes kids with Down syndrome do odd things in front of other people. A few siblings said they felt uncertain and wondered, “What’s he gonna do this time?” whenever they went out. Many also said their parents gave their siblings with Down syndrome extra attention, which sometimes made non-disabled siblings feel less valued.
Some interviewees felt that as sibs, they had to follow certain unspoken rules. For instance, many seemed to believe that it is wrong to feel frustrated with their sibling with Down syndrome, and if they do feel frustrated, they shouldn’t complain. One participant explained it this way: “You can’t really be mad, but you’re mad.”
Despite these difficulties, there were a lot of positive qualities to these sibling relationships, too. No two people with Down syndrome are the same, but people who know them do tend to describe them as really fun and loving. Interviewees told me stories about everything from funny Skype conversations to one brother’s Gordon Ramsey impressions. Many participants kept these warm relationships with their siblings into adulthood. Some people felt their siblings needed them, so they felt guilty when they had to move away or spend less time with their siblings. One interviewee said, “Other siblings don’t need you as much, but she definitely does.”
Overall, everyone in my sample said their siblings with Down syndrome had affected who they are. Several said their sibling made them a “better person.” Many people also felt that handling a sibling with Down syndrome made them more accepting of differences, and made them grow up faster. Some participants measured people’s character based on whether they got along with their siblings with Down syndrome. One woman even said her sister was a “monitoring stick for boyfriends” — potential suitors had to receive the sister’s approval to stay in the picture! Finally, having a sibling with Down syndrome drew many people to disability-related volunteer work, careers in special education, and helping professions such as nursing and counseling. (This pattern holds for me personally as well — because of Sara, I am starting law school at the University of Michigan this fall to pursue special education law.)
The sibling workshop in May was a wonderful opportunity to see the above attitudes in action. The kids at the workshop talked about many activities they enjoy with their siblings, including playing video games, wrestling, and singing and dancing. Just like the adults I interviewed, sibs expressed a variety of feelings towards their siblings, such as happy, frustrated, and proud. Common complaints included annoyance when the sibling with Down syndrome got into the other kids’ belongings, and embarrassment over socially inappropriate behaviors. Several attendees said that they worried about their sibling’s safety — that a baby brother might fall down the stairs, or that a teenage sister might venture out on her own and get lost.
One activity I found particularly interesting was when I read out pretend questions from siblings of children with Down syndrome. The workshop attendees had plenty of wisdom to share with these hypothetical peers, showing that even in childhood they have gained important insights about their siblings. As a group, we discussed the unique pressures sibs face. In this vein, the older participants pointed out that sibs do not have to be perfect to make up for their brothers’ and sisters’ limitations. They also asserted that kids without disabilities are just as important as their siblings with Down syndrome, even if they sometimes get less attention.
In fact, the advice offered during our workshop parallels the lessons that my adult interviewees said they learned. The most common advice they gave was to treat a sibling with Down syndrome “like you would treat any sibling” — love them, play with them, and so on. Next, they pointed out that non-disabled siblings shouldn’t forget about their own wellbeing. They said sibs should be open with their parents when they’re frustrated, and that it’s good to “talk to someone about it,” meaning connecting with sibling organizations, a counselor, or another trusted adult. Additionally, they said it’s normal to “wish or wonder what it would be like to have a normal sibling. […] Don’t feel like you have to hide that feeling.” Finally, participants said that having a sibling with Down syndrome teaches you “more than you ever imagined,” especially patience and putting your life in perspective.
My hope in sharing my thesis and helping sibs connect is to give families a context for their own experiences. There is no wrong way to feel about having a sibling with Down syndrome — it’s perfectly normal to feel happiness, confusion, worry, anger, love, and more, sometimes all at the same time. Many parents wonder how a new baby with Down syndrome will affect their other children. I won’t sugarcoat it — there will be challenges, and it is very important to keep open lines of communication and make sure that siblings without disabilities feel appreciated. But above all, I want to reassure parents that the other kids in the family are going to be just fine.
I will sign off with the words of one of the young women I interviewed: “It seems bad at first, intimidating and scary. But once you get to know them, and see their personality, it’s like, how could you live without them?”
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